Just thought that I would give you an update on Mary Jo's kidney stones. She had a lithotripsy procedure on Tuesday the 24th to fragment the kidney stones. A stent was placed in her urethra to help pass the fragments of the kidney stones. She was supposed to capture the frangments. But, she never really saw any since the procedure. Today, when she went to the urologist we found out why.
The doctor is baffled. The lithotripsy had no effect on the two orbs that the doctor thought were kidney stones in the utethra. They have moved some, but no change in size.
He is thinking that they are not actually in the urethra, but something on a blood vessel next to the urethra. The only way to know for sure is to run a scope up there. We will be going back to the OR to do that on Monday. So, she still has the stent until then.
In hindsight, I thought that it was odd that she would have two kidney stones in the urethra. She had no pain or discomfort before she went to the doctor after whatever or wherever they are became larger when the post-transplant scan was compared to the one done before the transplant by the hematology people here and at Vanderbilt.
Hopefully, they will get to the bottom of it on Monday. Whatever it is, it's not cancerous because the PET scan would have picked that up.
Monday, September 30, 2013
Sunday, September 29, 2013
Stem Cell Transplants: A Primer
An excellent article from Dr. Sharman's CLL & Lymphoma Blog detailing the basics of stem cell transplants
Very few of the things we do to treat patients with lymphoma or CLL are more foreign than “transplant.” When I bring it up as a treatment option, I often get more of a bland reaction than anything else. When it comes to transplant, I suspect the reason is that most patients don’t even know what they don’t know.
It is easy to be scared of the “boogey man” because we all grow up terrified of the mythical character – but transplant? Few patients have had firsthand experience to understand what it means until they start down that path on their own. Furthermore, there is more misinformation and even fraud out there about “stem cells” than just about any other treatment available. Even the entire medical community was duped by fraudulent science for a number of years. Like many aspects of cancer care, an informed patient with good judgment will always be better off.
There are two main types of transplant – autologous (aka. auto – from yourself) and allogeneic (aka. allo – from someone else).
Auto transplant is really the easiest to understand. The best way to conceptualize an auto transplant is just “high dose chemotherapy.” In an auto transplant, the patient donates his own stem cells (normally by a process called apheresis which is a lot like dialysis). The cells get stored in the freezer for later use. The patient then goes into the hospital for a very high dose of chemotherapy that is enough to wipe out the bone marrow completely. The doc thaws out the stem cells from the freezer, and infuses them into the patient (via the arm) a day or two later.
The stem cells magically find their way back to the bone marrow where they set up shop and begin producing new cells. About three weeks later those stem cells “engraft” and the blood counts start coming back. It has the effect of exposing the cancer to a very high dose of chemotherapy while protecting the bone marrow by keeping it out of the fight.
During the period of time following the chemotherapy and before engraftment, the patient is pretty fragile medically. Red blood cell and platelet transfusions are almost always necessary. Since transfusing white blood cells doesn’t work that well and could even be dangerous the patient is at risk for infections.
Fevers are the norm as gut bacteria take advantage of the absence of an immune system. Infections that would often be quite unusual including fungal infections of the sinuses and lungs can become very dangerous. Just about every patient will be on some powerful antibiotics to get them through those several weeks whether they are treating an infection or trying to prevent one. The patient is often in the hospital for a considerable part of the time while their immune system is compromised. A number of transplant centers are able to get the patient out of the hospital for some of the time but getting readmitted is quite common.
Much of the acute risk abates after the first 30 days, but for a nearly a year, there may be some dysfunction of the immune system. Shingles infections and a weird pneumonia known as PCP (or whatever they have changed its name to this year) can happen during this longer period so preventative antibiotics are fairly common and work pretty well. Overall, I would say that patients feel like a survivor who has regained their footing somewhere between 30-60 days but the lingering, vague, sense of wellbeing takes quite a bit longer. I’ve heard patients say they didn’t feel back to “normal” for anywhere between 6-12 months.
Age makes a huge difference for patients going through this. We always make a point of saying, “chronology does not equal physiology” but as individuals get older the process becomes much harder. The balance between risk and benefits shifts for the worse somewhere between ages 65-75. Many 65 year olds could get through this though they will definitely feel quite a bit older when they are done with it. Other 65 year olds who have acquired lung, heart, or kidney disease along the way may not be eligible. At the other end, few 75 year olds would be able to get through this. Many transplant centers will have an age cutoff of around 70 years and may make exceptions for the 72 year old who still does recreational distance running. Europe tends to be more conservative and age restrictions are more firmly set and may be as young as 60-65 in some cases.
Auto transplant is often employed for patients with Diffuse Large B Cell Lymphoma whose disease has reoccurred after initial therapy. It is also commonly used in T cell NHL (sometimes in first remission, sometimes after relapse depending on the type and other variables). It is less frequently used in Follicular Lymphoma (or other indolent NHL’s) for a variety of reasons and rarely (if ever) used in CLL. Multiple Myeloma is one other blood cancer where it is quite common but I have not written extensively on this blog about that disease.
Allo transplants are an entirely different animal and need considerably more explanation. The fundamental difference in an allo transplant is that the bulk of the anti-cancer activity comes from the transplanted immune system identifying the cancer and eliminating it. The hope is that the immune system doesn’t also eliminate the patient at the same time. Unfortunately it can be hard to control the outcome once the wheels are set in motion.
In allo transplant, there are two main questions. The first is whether the process will be myeloablative (ie. use powerful chemotherapy to wipe out the bone marrow first) or non-myeloablative (just weaken the immune system enough to slip somebody else’s immune system in). The second question is how well matched the donor is. A donor can be a “matched related donor” (MRD), a “matched unrelated donor” (MUD), or a “mismatched unrelated donor.” There are other significant questions (ie. tumor purging, T-cell depletion, half-match donors (ie. haplo) but I want to finish this post before my plane lands in three hours.
In a myeloablative transplant you pretty much start out with an auto transplant in terms of chemotherapy. The most obvious difference though is that the stem cells don’t come from the patient – instead they come from somebody else. In a non-myeloablative transplant you utilize drugs that profoundly weaken the immune system (without getting rid of it completely) enough so that it doesn’t quickly “reject” a bunch of new stem cells as though they were an invading hoard of bacteria. Interestingly, the drugs utilized may include campath and fludarabine (two drugs often used to treat CLL in the first place).
The type of donor also makes an enormous difference. I need to go into a little depth about how the immune system works. HLA genes are central to how an individual’s immune system interacts with the body and any infections. When an infection gets into the body, the virus or bacteria gets swallowed by certain cells and chopped up into lots of tiny bits. These bits then get loaded onto proteins on the surface of the cell encoded by HLA genes sort of like an ice cube in a cup. This is a process known as “antigen presentation.” How the little pieces of chopped up virus or bacteria (the ice) sit inthe HLA proteins (the cup) plays an enormous role in whether the immune system decides there is a problem or not. The better your cup matches somebody else’s cup, the more likely the ice is going to fit the same way (this analogy would work a lot better if it was a really small cup or a really big ice cube so that it was a pretty snug fit)
The major HLA genes are on chromosome 6 and you have two different sets (one from mom and one from dad). On each chromosome, there are three main sites (HLA-A, HLA-B, and HLA-DR) and each site could have quite a few possible variations (59, 118, 124 respectively). So there are six different sites that need to match up perfectly and each site could have a multitude of different variations. Therefore there is a very small chance that two genetically unrelated individuals would be a perfect match. Since half of your HLA genes come from mom and half from dad and in each case they are inherited in unison (ie you get one chromosome with three automatic matches), you have a one in four chance of matching a biologic sibling.
By definition, you could NOT be a match with either a parent or a child (half match at best unless they were cloned). I did have a memorable patient from an area where individuals were occasionally known to get married to a relative. He told me, “Son, my family tree don’t branch.” You should know that donor searches sometimes turn up family surprises (albeit rarely).
Beyond the “major” HLA genes, there are a bunch of “minor” genes that are so numerous and so variable, that it is simply best if you have a sibling donor that is a match. That will almost always be the best fit. If you didn’t win the sibling lottery with the 1/4 chance of a match, then they look through the donor registries. I’ve never understood why this can take so long – but it does. North American Caucasians have a pretty darn good chance of finding several matches. Once you start throwing in ethnic minorities into the gene pool though, the chance of finding a match gets lower (not impossible). Often they may find multiple donors that match and then they can utilize additional techniques to figure out who is a “better match.” Sometimes banked umbilical cord blood can serve as the donor tissue in certain centers.
Once a match is found, and the “conditioning regimen” is given to the patient (whether that is myeloablative chemotherapy, or non-myeloablative therapy), the new stem cells are injected. These can take a while to engraft just like in auto transplants above.
Once the cells are engrafted, a new challenge arises. Since these immune system is from another person, it will start to attack the body it was put into in a process called “graft versus host disease” (aka. GVHD). The physician therefore needs to “lower” the new immune system by giving drugs like methotrexate and cyclosporine. These are not necessarily easy drugs to manage.
You might therefore ask, “if I am getting a new immune system to attack my cancer, why are you choosing to handicap it?” GVHD can be a lot worse than the cancer at times. GVHD is divided into early versus late depending on which side of 100 days it falls. Acute GVHD can manifest with dangerous rash, diarrhea, and liver dysfunction. Chronic GVHD can have just about any sort of problem you can imagine, but often includes skin and gastrointestinal side effects. Acute GVHD can be life threatening if not managed correctly. Simultaneously with a lowered immune system, infections can be an enormous problem.
The danger often subsides with time and the immune suppression can be lowered. This enables the transplanted immune system to go after the cancer. Since that can take a while though, it makes most sense for patients to have their disease under optimal control before going into transplant. If you have a lot of CLL running around, chances are it will progress before the immune system can go after it. Furthermore, the immune system may think the cancer is supposed to be there, then you are stuck with both the cancer and the GVHD…..aargh.
If everything goes well, the transplant center may let you return to your home community after about 100 days. Yes – you may need to temporarily live near the hospital for several months. Transplant programs often have arrangements to make this possible.
If all goes well, you may indeed be cured of your disease. For something like relapsed DLBCL or CLL, that can be a life you would not possible have any other way. It makes it quite a high stakes gamble. There is both high risk and potentially high reward.
Many have heard about the new “engineered T-cells.” I am on my way back from the IWCLL meeting (international workshop on CLL) where we heard an update on this technology. Looks like 1 out of four patients may be genuinely cured by this. Another 1 out of 4 get a partial response. For half of those it is brief and the other half it continues to improve over time. 2 out of 4 patients may not benefit from the procedure.
These are impressive statistics for a procedure that functions like an “allo transplant” but by definition does not have the risk of GVHD. Numbers are still VERY small. Something like 30 patients have been treated at Penn TOTAL. I think in the long run, this will be done before allo transplants – but it is still early enough that it remains difficult to predict.
Hopefully that is a good orientation. It is by no means complete but I think I’ve officially got a writers cramp.
Very few of the things we do to treat patients with lymphoma or CLL are more foreign than “transplant.” When I bring it up as a treatment option, I often get more of a bland reaction than anything else. When it comes to transplant, I suspect the reason is that most patients don’t even know what they don’t know.
It is easy to be scared of the “boogey man” because we all grow up terrified of the mythical character – but transplant? Few patients have had firsthand experience to understand what it means until they start down that path on their own. Furthermore, there is more misinformation and even fraud out there about “stem cells” than just about any other treatment available. Even the entire medical community was duped by fraudulent science for a number of years. Like many aspects of cancer care, an informed patient with good judgment will always be better off.
There are two main types of transplant – autologous (aka. auto – from yourself) and allogeneic (aka. allo – from someone else).
Auto transplant is really the easiest to understand. The best way to conceptualize an auto transplant is just “high dose chemotherapy.” In an auto transplant, the patient donates his own stem cells (normally by a process called apheresis which is a lot like dialysis). The cells get stored in the freezer for later use. The patient then goes into the hospital for a very high dose of chemotherapy that is enough to wipe out the bone marrow completely. The doc thaws out the stem cells from the freezer, and infuses them into the patient (via the arm) a day or two later.
The stem cells magically find their way back to the bone marrow where they set up shop and begin producing new cells. About three weeks later those stem cells “engraft” and the blood counts start coming back. It has the effect of exposing the cancer to a very high dose of chemotherapy while protecting the bone marrow by keeping it out of the fight.
During the period of time following the chemotherapy and before engraftment, the patient is pretty fragile medically. Red blood cell and platelet transfusions are almost always necessary. Since transfusing white blood cells doesn’t work that well and could even be dangerous the patient is at risk for infections.
Fevers are the norm as gut bacteria take advantage of the absence of an immune system. Infections that would often be quite unusual including fungal infections of the sinuses and lungs can become very dangerous. Just about every patient will be on some powerful antibiotics to get them through those several weeks whether they are treating an infection or trying to prevent one. The patient is often in the hospital for a considerable part of the time while their immune system is compromised. A number of transplant centers are able to get the patient out of the hospital for some of the time but getting readmitted is quite common.
Much of the acute risk abates after the first 30 days, but for a nearly a year, there may be some dysfunction of the immune system. Shingles infections and a weird pneumonia known as PCP (or whatever they have changed its name to this year) can happen during this longer period so preventative antibiotics are fairly common and work pretty well. Overall, I would say that patients feel like a survivor who has regained their footing somewhere between 30-60 days but the lingering, vague, sense of wellbeing takes quite a bit longer. I’ve heard patients say they didn’t feel back to “normal” for anywhere between 6-12 months.
Age makes a huge difference for patients going through this. We always make a point of saying, “chronology does not equal physiology” but as individuals get older the process becomes much harder. The balance between risk and benefits shifts for the worse somewhere between ages 65-75. Many 65 year olds could get through this though they will definitely feel quite a bit older when they are done with it. Other 65 year olds who have acquired lung, heart, or kidney disease along the way may not be eligible. At the other end, few 75 year olds would be able to get through this. Many transplant centers will have an age cutoff of around 70 years and may make exceptions for the 72 year old who still does recreational distance running. Europe tends to be more conservative and age restrictions are more firmly set and may be as young as 60-65 in some cases.
Auto transplant is often employed for patients with Diffuse Large B Cell Lymphoma whose disease has reoccurred after initial therapy. It is also commonly used in T cell NHL (sometimes in first remission, sometimes after relapse depending on the type and other variables). It is less frequently used in Follicular Lymphoma (or other indolent NHL’s) for a variety of reasons and rarely (if ever) used in CLL. Multiple Myeloma is one other blood cancer where it is quite common but I have not written extensively on this blog about that disease.
Allo transplants are an entirely different animal and need considerably more explanation. The fundamental difference in an allo transplant is that the bulk of the anti-cancer activity comes from the transplanted immune system identifying the cancer and eliminating it. The hope is that the immune system doesn’t also eliminate the patient at the same time. Unfortunately it can be hard to control the outcome once the wheels are set in motion.
In allo transplant, there are two main questions. The first is whether the process will be myeloablative (ie. use powerful chemotherapy to wipe out the bone marrow first) or non-myeloablative (just weaken the immune system enough to slip somebody else’s immune system in). The second question is how well matched the donor is. A donor can be a “matched related donor” (MRD), a “matched unrelated donor” (MUD), or a “mismatched unrelated donor.” There are other significant questions (ie. tumor purging, T-cell depletion, half-match donors (ie. haplo) but I want to finish this post before my plane lands in three hours.
In a myeloablative transplant you pretty much start out with an auto transplant in terms of chemotherapy. The most obvious difference though is that the stem cells don’t come from the patient – instead they come from somebody else. In a non-myeloablative transplant you utilize drugs that profoundly weaken the immune system (without getting rid of it completely) enough so that it doesn’t quickly “reject” a bunch of new stem cells as though they were an invading hoard of bacteria. Interestingly, the drugs utilized may include campath and fludarabine (two drugs often used to treat CLL in the first place).
The type of donor also makes an enormous difference. I need to go into a little depth about how the immune system works. HLA genes are central to how an individual’s immune system interacts with the body and any infections. When an infection gets into the body, the virus or bacteria gets swallowed by certain cells and chopped up into lots of tiny bits. These bits then get loaded onto proteins on the surface of the cell encoded by HLA genes sort of like an ice cube in a cup. This is a process known as “antigen presentation.” How the little pieces of chopped up virus or bacteria (the ice) sit inthe HLA proteins (the cup) plays an enormous role in whether the immune system decides there is a problem or not. The better your cup matches somebody else’s cup, the more likely the ice is going to fit the same way (this analogy would work a lot better if it was a really small cup or a really big ice cube so that it was a pretty snug fit)
The major HLA genes are on chromosome 6 and you have two different sets (one from mom and one from dad). On each chromosome, there are three main sites (HLA-A, HLA-B, and HLA-DR) and each site could have quite a few possible variations (59, 118, 124 respectively). So there are six different sites that need to match up perfectly and each site could have a multitude of different variations. Therefore there is a very small chance that two genetically unrelated individuals would be a perfect match. Since half of your HLA genes come from mom and half from dad and in each case they are inherited in unison (ie you get one chromosome with three automatic matches), you have a one in four chance of matching a biologic sibling.
By definition, you could NOT be a match with either a parent or a child (half match at best unless they were cloned). I did have a memorable patient from an area where individuals were occasionally known to get married to a relative. He told me, “Son, my family tree don’t branch.” You should know that donor searches sometimes turn up family surprises (albeit rarely).
Beyond the “major” HLA genes, there are a bunch of “minor” genes that are so numerous and so variable, that it is simply best if you have a sibling donor that is a match. That will almost always be the best fit. If you didn’t win the sibling lottery with the 1/4 chance of a match, then they look through the donor registries. I’ve never understood why this can take so long – but it does. North American Caucasians have a pretty darn good chance of finding several matches. Once you start throwing in ethnic minorities into the gene pool though, the chance of finding a match gets lower (not impossible). Often they may find multiple donors that match and then they can utilize additional techniques to figure out who is a “better match.” Sometimes banked umbilical cord blood can serve as the donor tissue in certain centers.
Once a match is found, and the “conditioning regimen” is given to the patient (whether that is myeloablative chemotherapy, or non-myeloablative therapy), the new stem cells are injected. These can take a while to engraft just like in auto transplants above.
Once the cells are engrafted, a new challenge arises. Since these immune system is from another person, it will start to attack the body it was put into in a process called “graft versus host disease” (aka. GVHD). The physician therefore needs to “lower” the new immune system by giving drugs like methotrexate and cyclosporine. These are not necessarily easy drugs to manage.
You might therefore ask, “if I am getting a new immune system to attack my cancer, why are you choosing to handicap it?” GVHD can be a lot worse than the cancer at times. GVHD is divided into early versus late depending on which side of 100 days it falls. Acute GVHD can manifest with dangerous rash, diarrhea, and liver dysfunction. Chronic GVHD can have just about any sort of problem you can imagine, but often includes skin and gastrointestinal side effects. Acute GVHD can be life threatening if not managed correctly. Simultaneously with a lowered immune system, infections can be an enormous problem.
The danger often subsides with time and the immune suppression can be lowered. This enables the transplanted immune system to go after the cancer. Since that can take a while though, it makes most sense for patients to have their disease under optimal control before going into transplant. If you have a lot of CLL running around, chances are it will progress before the immune system can go after it. Furthermore, the immune system may think the cancer is supposed to be there, then you are stuck with both the cancer and the GVHD…..aargh.
If everything goes well, the transplant center may let you return to your home community after about 100 days. Yes – you may need to temporarily live near the hospital for several months. Transplant programs often have arrangements to make this possible.
If all goes well, you may indeed be cured of your disease. For something like relapsed DLBCL or CLL, that can be a life you would not possible have any other way. It makes it quite a high stakes gamble. There is both high risk and potentially high reward.
Many have heard about the new “engineered T-cells.” I am on my way back from the IWCLL meeting (international workshop on CLL) where we heard an update on this technology. Looks like 1 out of four patients may be genuinely cured by this. Another 1 out of 4 get a partial response. For half of those it is brief and the other half it continues to improve over time. 2 out of 4 patients may not benefit from the procedure.
These are impressive statistics for a procedure that functions like an “allo transplant” but by definition does not have the risk of GVHD. Numbers are still VERY small. Something like 30 patients have been treated at Penn TOTAL. I think in the long run, this will be done before allo transplants – but it is still early enough that it remains difficult to predict.
Hopefully that is a good orientation. It is by no means complete but I think I’ve officially got a writers cramp.
Thursday, September 26, 2013
How my dance with CLL began
It was supposed to be a routine annual physical, and that is how it started. Lungs ... check. Heart ... check. Prostate ... check. Everything was A-OK.
At the close of the physical, I pointed out a swollen place on my neck. I thought it was a fatty tumor.
"I'm going to send you to an endocrinologist," my doctor said. "He will probably do a biopsy."
About that time, the nurse brought in the results from my complete blood count. My white blood count was high, way high. "No. I'm going to send you to an oncologist," my doctor said, correcting herself.
Scary words indeed. Something I never thought I'd hear nor wanted to hear in December 2006.
"What do you think it is?" I asked. My doctor suggested it was chronic lymphocytic leukemia (CLL).
She felt really bad for giving me the news. I hugged her and told her it was OK. She was right.
Six days later, I saw an oncologist who confirmed my chronic lymphocytic leukemia diagnosis, but ran further tests to verify it. Thus began my dance with cancer.
Read entire article here...
Wednesday, September 25, 2013
New CLL Drugs: Interview with Dr. Jeff Sharman
From Dr. Sharman's CLL & Lymphoma Blog
Andrew Schorr interviews Dr. Jeff Sharman in Germany at a IWCLL meeting. This interview provides an overview of where the new CLL drugs may best fit into an individuals treatment plan. Hopefully it is a good summary for you and puts things into a more focused perspective.
Be The Light!
You are the light of the world—
like a city on a hilltop that cannot be hidden.
No one lights a lamp and then puts it under a basket.
Instead, a lamp is placed on a stand,
where it gives light to everyone in the house.
In the same way, let your good deeds shine out for all to see,
so that everyone will praise your heavenly Father.
– Matthew 5:14
With God, I am always victorius!
From on high he reached down and seized me;
he drew me forth from the mighty waters.
He snatched me from my powerful foe,
from my enemies whose strength I could not match.
They assailed me in the day of my misfortune,
but the Lord was my support.
He brought me forth into freedom,
he saved me because he loved me.
Glory to the Father, and to the Son, and to the Holy Spirit:
– as it was in the beginning, is now, and will be for ever. Amen.
Tuesday, September 24, 2013
Obituary for Karin Diamond
Obituary from eyes peeled always blog
Karin (Dubreuil) Diamond, 31 of Tariffville, CT, passed away in the comfort of her home on September 21, 2013, surrounded by her husband, family, and friends after a courageous four-and-a-half year fight with Hodgkin Lymphoma. Karin inspired others through her love of life, her respect for everyone, and her gift of words. She was passionate about people, wellness, learning, and living with intention. Karin enjoyed being active and connecting with her many friends from all around the world. Karin was beautiful, gentle, compassionate, smart, outgoing, and she radiated love.
She took great pride in crafting her writing that she posted on her websiteEyesPeeledAlways.com. Her work was featured in The Huffington Post, The Hartford Courant, Hartford Magazine, Cure Magazine, and other publications. Karin was a graduate of Torrington High School (2000) and the University of New Hampshire (2004), then worked in the Greater Hartford area in editing, marketing, writing, public relations, and communications.
Karin is survived by her husband Craig Diamond and her Sammy-dog of Tariffville, CT; her parents Paul and Laura Dubreuil of Torrington, CT; her sister Kristen Dubreuil of Denver, CO; her brother Michael Dubreuil and wife Rachel Pianta of Westbrook, CT; her brother and sister-in-law Eric and Rachel Diamond, nephew and niece Jake and Anna of Norfolk, MA; Uncle Kevin Brothwell; Uncle Mark Brothwell and his wife Roberta; and countless others who loved her.
A Celebration of Life gathering will be held on Saturday, October 5th, 2013 from 2:00 - 5:00 PM at SummerWind Performing Arts Center, 40 Griffin Road North, Windsor, CT. In lieu of flowers, donations can be made in Karin’s memory to First Descents, which provides outdoor adventures for young adult cancer survivors, or Memorial Sloan Kettering Cancer Center’s Visible Ink writing program.
Funeral Home Book of Memories
Clinical Study R-CHOP 14-day versus 21-day cycles
Rituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisolone in patients with newly diagnosed diffuse large B-cell non-Hodgkin lymphoma: a phase 3 comparison of dose intensification with 14-day versus 21-day cycles
Background
Dose intensification with a combinationRituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisolone in patients with newly diagnosed diffuse large B-cell non-Hodgkin lymphoma: a phase 3 comparison of dose intensification with 14-day versus 21-day cycles of cyclophosphamide, doxorubicin, vincristine, and prednisolone (CHOP) every 2 weeks improves outcomes in patients older than 60 years with diffuse large B-cell lymphoma compared with CHOP every 3 weeks. We investigated whether this survival benefit from dose intensification persists in the presence of rituximab (R-CHOP) in all age groups.
Methods
Patients (aged ≥18 years) with previously untreated bulky stage IA to stage IV diffuse large B-cell lymphoma in 119 centres in the UK were randomly assigned centrally in a one-to-one ratio, using minimisation, to receive six cycles of R-CHOP every 14 days plus two cycles of rituximab (R-CHOP-14) or eight cycles of R-CHOP every 21 days (R-CHOP-21). R-CHOP-21 was intravenous cyclophosphamide 750 mg/m2, doxorubicin 50 mg/m2, vincristine 1·4 mg/m2 (maximum dose 2 mg), and rituximab 375 mg/m2 on day 1, and oral prednisolone 40 mg/m2 on days 1—5, administered every 21 days for a total of eight cycles. R-CHOP-14 was intravenous cyclophosphamide 750 mg/m2, doxorubicin 50 mg/m2, vincristine 2 mg, rituximab 375 mg/m2 on day 1, and oral prednisolone 100 mg on days 1—5, administered every 14 days for six cycles, followed by two further infusions of rituximab 375 mg/m2 on day 1 every 14 days. The trial was not masked. The primary outcome was overall survival (OS). This study is registered, number ISCRTN 16017947.
Findings
1080 patients were assigned to R-CHOP-21 (n=540) and R-CHOP-14 (n=540). With a median follow-up of 46 months (IQR 35—57), 2-year OS was 82·7% (79·5—85·9) in the R-CHOP-14 group and 80·8% (77·5—84·2) in the R-CHOP-21 (standard) group (hazard ratio 0·90, 95% CI 0·70—1·15; p=0·3763). No significant improvement was noted in 2-year progression-free survival (R-CHOP-14 75·4%, 71·8—79·1, and R-CHOP-21 74·8%, 71·0—78·4; 0·94, 0·76—1·17; p=0·5907). High international prognostic index, poor-prognosis molecular characteristics, and cell of origin were not predictive for benefit from either schedule. Grade 3 or 4 neutropenia was higher in the R-CHOP-21 group (318 [60%] of 534 vs 167 [31%] of 534), with no prophylactic use of recombinant human granulocyte-colony stimulating factor mandated in this group, whereas grade 3 or 4 thrombocytopenia was higher with R-CHOP-14 (50 [9%] vs 28 [5%]); other frequent grade 3 or 4 adverse events were febrile neutropenia (58 [11%] vs 28 [5%]) and infection (125 [23%] vs 96 [18%]). Frequencies of non-haematological adverse events were similar in the R-CHOP-21 and R-CHOP-14 groups.
Interpretation
R-CHOP-14 is not superior to R-CHOP-21 chemotherapy for previously untreated diffuse large B-cell lymphoma; therefore, R-CHOP-21 remains the standard first-line treatment in patients with this haematological malignancy. No molecular or clinical subgroup benefited from dose intensification in this study.
Funding
Chugai Pharmaceutical, Cancer Research UK, National Institute for Health Research Biomedical Research Centres scheme at both University College London and the Royal Marsden NHS Foundation Trust, and Institute of Cancer Research.
Background
Dose intensification with a combinationRituximab plus cyclophosphamide, doxorubicin, vincristine, and prednisolone in patients with newly diagnosed diffuse large B-cell non-Hodgkin lymphoma: a phase 3 comparison of dose intensification with 14-day versus 21-day cycles of cyclophosphamide, doxorubicin, vincristine, and prednisolone (CHOP) every 2 weeks improves outcomes in patients older than 60 years with diffuse large B-cell lymphoma compared with CHOP every 3 weeks. We investigated whether this survival benefit from dose intensification persists in the presence of rituximab (R-CHOP) in all age groups.
Methods
Patients (aged ≥18 years) with previously untreated bulky stage IA to stage IV diffuse large B-cell lymphoma in 119 centres in the UK were randomly assigned centrally in a one-to-one ratio, using minimisation, to receive six cycles of R-CHOP every 14 days plus two cycles of rituximab (R-CHOP-14) or eight cycles of R-CHOP every 21 days (R-CHOP-21). R-CHOP-21 was intravenous cyclophosphamide 750 mg/m2, doxorubicin 50 mg/m2, vincristine 1·4 mg/m2 (maximum dose 2 mg), and rituximab 375 mg/m2 on day 1, and oral prednisolone 40 mg/m2 on days 1—5, administered every 21 days for a total of eight cycles. R-CHOP-14 was intravenous cyclophosphamide 750 mg/m2, doxorubicin 50 mg/m2, vincristine 2 mg, rituximab 375 mg/m2 on day 1, and oral prednisolone 100 mg on days 1—5, administered every 14 days for six cycles, followed by two further infusions of rituximab 375 mg/m2 on day 1 every 14 days. The trial was not masked. The primary outcome was overall survival (OS). This study is registered, number ISCRTN 16017947.
Findings
1080 patients were assigned to R-CHOP-21 (n=540) and R-CHOP-14 (n=540). With a median follow-up of 46 months (IQR 35—57), 2-year OS was 82·7% (79·5—85·9) in the R-CHOP-14 group and 80·8% (77·5—84·2) in the R-CHOP-21 (standard) group (hazard ratio 0·90, 95% CI 0·70—1·15; p=0·3763). No significant improvement was noted in 2-year progression-free survival (R-CHOP-14 75·4%, 71·8—79·1, and R-CHOP-21 74·8%, 71·0—78·4; 0·94, 0·76—1·17; p=0·5907). High international prognostic index, poor-prognosis molecular characteristics, and cell of origin were not predictive for benefit from either schedule. Grade 3 or 4 neutropenia was higher in the R-CHOP-21 group (318 [60%] of 534 vs 167 [31%] of 534), with no prophylactic use of recombinant human granulocyte-colony stimulating factor mandated in this group, whereas grade 3 or 4 thrombocytopenia was higher with R-CHOP-14 (50 [9%] vs 28 [5%]); other frequent grade 3 or 4 adverse events were febrile neutropenia (58 [11%] vs 28 [5%]) and infection (125 [23%] vs 96 [18%]). Frequencies of non-haematological adverse events were similar in the R-CHOP-21 and R-CHOP-14 groups.
Interpretation
R-CHOP-14 is not superior to R-CHOP-21 chemotherapy for previously untreated diffuse large B-cell lymphoma; therefore, R-CHOP-21 remains the standard first-line treatment in patients with this haematological malignancy. No molecular or clinical subgroup benefited from dose intensification in this study.
Funding
Chugai Pharmaceutical, Cancer Research UK, National Institute for Health Research Biomedical Research Centres scheme at both University College London and the Royal Marsden NHS Foundation Trust, and Institute of Cancer Research.
Sunday, September 22, 2013
Robin Roberts' Journey: My First Birthday
Robin Roberts' Journey: My First Birthday, Bone Marrow Transplant, cancer survivor.
Michael Strahan learned when I was first diagnosed with MDS that many in the transplant community consider the anniversary of their bone marrow transplant to be their new birthday. Well, I'm ecstatic to share with you all that I turn one year old today! It's been exactly one year to the day since my blessed big sister, Sally-Ann, gave me the life-saving gift of a bone marrow transplant.
Unlike my first first birthday -- which of course I don't remember -- this time around I know I will never forget all the people who have reached out to me over the past year. Your words of encouragement, smiling faces, and prayers have carried me through the toughest times. I know that I would not have made it to this milestone without you.
My Momma always said, "Everybody's got something." We all have battles we face or demons we struggle with or challenges to overcome. I feel so blessed to have been able to share my journey and my battle with all of you. It's humbling to hear that it has inspired many of you to tackle whatever adversity you face in your own lives. When fear knocks, let faith answer the door.
That is my birthday wish... that you all find the strength within yourselves to push forward and have people in your lives who will be there to love you through it. That is what I will wish for when I close my eyes and blow out my birthday candles. Or rather, candle.
Light Love Power Presence...and blessings to all. XO
Michael Strahan learned when I was first diagnosed with MDS that many in the transplant community consider the anniversary of their bone marrow transplant to be their new birthday. Well, I'm ecstatic to share with you all that I turn one year old today! It's been exactly one year to the day since my blessed big sister, Sally-Ann, gave me the life-saving gift of a bone marrow transplant.
Unlike my first first birthday -- which of course I don't remember -- this time around I know I will never forget all the people who have reached out to me over the past year. Your words of encouragement, smiling faces, and prayers have carried me through the toughest times. I know that I would not have made it to this milestone without you.
My Momma always said, "Everybody's got something." We all have battles we face or demons we struggle with or challenges to overcome. I feel so blessed to have been able to share my journey and my battle with all of you. It's humbling to hear that it has inspired many of you to tackle whatever adversity you face in your own lives. When fear knocks, let faith answer the door.
That is my birthday wish... that you all find the strength within yourselves to push forward and have people in your lives who will be there to love you through it. That is what I will wish for when I close my eyes and blow out my birthday candles. Or rather, candle.
Light Love Power Presence...and blessings to all. XO
Saturday, September 21, 2013
From eyes peeled | always blog: RIP Karin Diamond
Goodbye for Now 6/29/82 - 9/21/13
By my side along with friends and family, Karin passed out of this world today, peacefully and calmly.
It's been a most difficult week. The cancer metastasized to her liver and toxins quickly built up. But not before many many more wonderful moments together. Karin maintained her poise, warmth, and beauty throughout her entire life, and her written words are a legacy that will keep her memory alive and well. Her writing has helped us all in different ways and will continue to benefit all who take the time to read, listen, and think.
Karin was able to maintain such an incredible outlook because of the people around her, especially those in her blog community who shared so much of their own lives with her. From the bottom of my heart, than you for your support and love that you've shown to both of us.
The energy that she has left behind for all of us is palpable. We must promise never to lose sight of the valuable lessons we learned from her. Embrace one another, share, learn, stretch yourself, embrace your passion, listen, love, and keep your eyes peeled.
I will love you forever, Karin Diamond. Goodbye for now.
-Craig
Memorial Service details will follow.
Friday, September 20, 2013
Ofatumumab Granted Breakthrough Therapy Designation for Untreated CLL
Recently, on September 13 the FDA granted a Breakthrough Therapy Designation to ofatumumab (Arzerra) in combination with chlorambucil for previously untreated patients with chronic lymphocytic leukemia (CLL) who are inappropriate for fludarabine-based therapy. This designation is awarded to drugs whose preliminary clinical evidence suggests an improvement over existing therapies on one or more clinically significant endpoints, speeding the bench to beside process. The designation was granted after preliminary results from a phase 3 clinical trial involving over 400 patients was announced in May.
Ofatumumab is a monoclonal antibody that targets an epitope on the CD20 molecule that encompasses parts of the small and large extra-cellular loops. The CD20 molecule is found on over 90% of B-cell lymphomas and assorted lymphoid tumors with a B-cell origin. Ofatumumab effectively kills cancer cells by directing the body’s immune system against normal and cancerous B-cells, and attaching to the CD20 molecule located on the surface of cancerous B-cells.
In addition to the aforementioned purposes, ofatumumab is being investigated for treatment in follicular lymphoma, diffuse large B-cell lymphoma, and Waldenstrom’s Macroglobulinemia.
Currently, there are ongoing ofatumumab trials at the Weill Cornell Lymphoma Program open to patients with CLL. Additional listings of clinical trials for CLL & SLL patients can be found here.
Please stay updated with our clinical trials listings for forthcoming trials involving ofatumumab and the Cornell Lymphoma Program website for further clinical research updates.
Tuesday, September 17, 2013
Will bone marrow biopsies be a thing of the past some day?...maybe
Here is a look at using PET/CT for detecting bone marrow involvement. They find that PET/CT always finds it but biopsy frequently misses it. This is hardly surprising since the biopsy can only take a sample from where the stick the needle in (the hip unusually). That is not much good if your bone marrow lymphoma is in a different bone. Maybe one day we will do away with BMB's altogether.
PET-CT staging of DLBCL accurately identifies and provides new insight into the clinical significance of bone marrow involvement.
Khan AB, Barrington SF, Mikhaeel NG, Hunt AA, Cameron L, Morris T, Carr R.
Source:
Department of Haematology, Guy's and St Thomas' Foundation Trust, London, United Kingdom.
Abstract:
We investigated whether positron emission tomography combined with computed tomography (PET-CT) identifies clinically important bone marrow involvement by diffuse large B-cell lymphoma (DLBCL) with sufficient accuracy to replace routine staging bone marrow biopsy. All patients from a single centre diagnosed as DLBCL since 2005 had data extracted from staging PET-CT, marrow biopsy, and treatment records. Of 130 patients, 35 (27%) were judged to have marrow involvement; 33 were identified by PET-CT compared with 14 by marrow histology. PET identified all clinically important marrow lymphoma, while biopsy did not upstage any patient. Sensitivity and specificity were 94% and 100% for PET-CT and 40% and 100% for marrow biopsy. As a secondary aim, we compared the prognosis of marrow involvement, as detected by PET-CT or biopsy. Cases with marrow deposits identified by PET-CT but not biopsy had progression-free survival (PFS) and overall survival similar to stage IV disease without involved marrow. Positive biopsy conferred significantly inferior PFS (P = .003); these cases frequently had other markers of poor-risk disease. These data confirm that in experienced hands PET-CT has a high level of accuracy for identifying marrow disease in DLBCL, and provide new insight into the nature and clinical significance of marrow involvement.
h/t Greg Dafoe
PET-CT staging of DLBCL accurately identifies and provides new insight into the clinical significance of bone marrow involvement.
Khan AB, Barrington SF, Mikhaeel NG, Hunt AA, Cameron L, Morris T, Carr R.
Source:
Department of Haematology, Guy's and St Thomas' Foundation Trust, London, United Kingdom.
Abstract:
We investigated whether positron emission tomography combined with computed tomography (PET-CT) identifies clinically important bone marrow involvement by diffuse large B-cell lymphoma (DLBCL) with sufficient accuracy to replace routine staging bone marrow biopsy. All patients from a single centre diagnosed as DLBCL since 2005 had data extracted from staging PET-CT, marrow biopsy, and treatment records. Of 130 patients, 35 (27%) were judged to have marrow involvement; 33 were identified by PET-CT compared with 14 by marrow histology. PET identified all clinically important marrow lymphoma, while biopsy did not upstage any patient. Sensitivity and specificity were 94% and 100% for PET-CT and 40% and 100% for marrow biopsy. As a secondary aim, we compared the prognosis of marrow involvement, as detected by PET-CT or biopsy. Cases with marrow deposits identified by PET-CT but not biopsy had progression-free survival (PFS) and overall survival similar to stage IV disease without involved marrow. Positive biopsy conferred significantly inferior PFS (P = .003); these cases frequently had other markers of poor-risk disease. These data confirm that in experienced hands PET-CT has a high level of accuracy for identifying marrow disease in DLBCL, and provide new insight into the nature and clinical significance of marrow involvement.
h/t Greg Dafoe
Thursday, September 12, 2013
Florida Coach Gives One-handed Hoops Player an Offer
One-handed basketball player Zach Hodskins joins "SportsCenter" to talk about defying the odds and getting offered a roster spot by Florida coach Billy Donovan.
Go Gators!
Go Gators!
Wednesday, September 11, 2013
Update #49 - Cancer free, now let's get rid of the stones
When Dr. Nishitha Reddy, Mary Jo's doctor at Vanderbilt, reviewed her PET Scan when we were there last month. She mentioned that Mary Jo's kidney stones had moved and had grown larger and that she needed to get an appointment with a urologist. Mary Jo had her appointment with Dr. Meiers at Baptist Health here in Louisville today.
Mary Jo has three stones that need to be fragmented. She has an appointment to have a shock wave lithotripsy procedure as an outpatient on Tuesday, September 24th. Please continue to keep Mary Jo in your prayers.
Also keep Mary Jo's nephew, Billy, in your prayers. He went to Vanderbilt today for his second round of R-EPOCH chemo.
For your listening pleasure!
Mary Jo has three stones that need to be fragmented. She has an appointment to have a shock wave lithotripsy procedure as an outpatient on Tuesday, September 24th. Please continue to keep Mary Jo in your prayers.
Also keep Mary Jo's nephew, Billy, in your prayers. He went to Vanderbilt today for his second round of R-EPOCH chemo.
For your listening pleasure!
Kat in London wins well deserved Beacon of Hope Award
Here's a post from Kat over at the The C Word blog. I have followed Kat's blog since Mary Jo's Mantle Cell Lymphoma reared it's ugly head back in October of last year. Kat's journey from months of mis-diagnosis to successful stem cell transplant has been truly amazing. Kat's story has been an inspiration to all lymphoma patients and caregivers who have been blessed by her courage, perseverance and 'never give up attitude' shared around the world through her blog. Congratulations Kat!
September 10, 2013
September 10, 2013
I’m sat here at Heathrow Terminal 3 waiting for my flight which leaves in about 6 hours. Ade is on his way from work so I’m sipping a coffee very slowly ‘borrowing’ electricity as my phone is almost dead – mainly due to the fact that I somehow turned the torch app on before throwing it in my bag when my dad came to pick me up to bring me here. You’re probably wondering why I got here so early? Well, I’m a lovely considerate daughter and I know after 3pm the M25 is hell and didn’t want dad to get caught up in it. You see I take after my dad and I know from previous experience (of my own) that crawling at 25mph through the roadworks stretch of one of the circles of hell for 2 hours is enough to induce soul destroying madness.
Anyhow, the subject of this blog – inspiration! What is it? I’ve googled the definition and several adjectives and synonyms come up, mostly harking on about creativity, improving dull aspirations, creating self-belief etc etc. I was actually amazed at how most of the definitions sounded as if they came out of some hocus pocus self-help book. The point is, I believe that ‘inspiration’ is a word that banded around far too often, I hear it in every day life, every one seems to be inspired by someone. It’s become a trivial word and sometimes I wonder if the true context of it has been lost over the years.
To me, inspiration is my parents. Ever since I was a kid, they have worked extremely hard to provide for me and my brother Mark. They sacrificed a lot so we can all have the life we do now because let’s face it, it was quite grizzly in 1980s London when you’re drowning in poverty. Having grown up watching them struggle and doing the best they can has inspired me to do just that. I have always worked hard, I had little jobs as I was growing up, I helped around the house to earn pocket money, I learnt that to get anywhere in life I have to work hard and fight. I’m strong because of my parents, they are a true image of inspiration.
You’re probably wondering why I’m writing about inspiration. I’m writing about it as I received a letter a couple of weeks ago that truly got me thinking hard about what being an ‘inspiration’ truly is. The letter was from an amazing charity called The Lymphoma Association. Click on the following image and have a read.
When I received this letter, I read it in total shock, in fact I had to read it a good few times before it sunk in that not only have I won an award, but I’ve won a Beacons of Hope award for making a remarkable contribution. The award ceremony is happening this Thursday and as I can’t make it, I emailed the Lymphoma Association straight away to make them aware of this. In the email I also expressed my surprise at having being nominated and short listed, never mind having won an award. A lady from the charity replied and said that not only had I been nominated, the charity had received multiple nominations for me. This floored me even more than the actual letter itself. The charity sent me one of the nominations and it basically said that I’m an inspiration and that writing this blog has helped educate people about my condition and that my courage to be so open and honest even about ‘taboo’ issues should be commended.
When I received this letter, I read it in total shock, in fact I had to read it a good few times before it sunk in that not only have I won an award, but I’ve won a Beacons of Hope award for making a remarkable contribution. The award ceremony is happening this Thursday and as I can’t make it, I emailed the Lymphoma Association straight away to make them aware of this. In the email I also expressed my surprise at having being nominated and short listed, never mind having won an award. A lady from the charity replied and said that not only had I been nominated, the charity had received multiple nominations for me. This floored me even more than the actual letter itself. The charity sent me one of the nominations and it basically said that I’m an inspiration and that writing this blog has helped educate people about my condition and that my courage to be so open and honest even about ‘taboo’ issues should be commended.
A few days after receiving this letter, I was still baffled as to how I won this award. I started this blog to keep loved ones informed of my progress and as a sounding board where I can rant. I also decided from the start that there was absolutely no point in blogging if I wasn’t going to be completely open and honest, hence lots of information about issues that come up in cancer that no one talks about. What I’m trying to say is, I never set out to inspire people, I blog for the reasons I mentioned above. As time went on, I did realise more and more people were following me (I read all your comments), including many cancer patients seeking more information about the rare type of lymphoma I had, so I decided that no matter what, I owe it to them to carry on. When I was first diagnosed with double hit lymphoma, I turned to the Internet for more information but as it’s a rare cancer, I didn’t find much of substance and that made me feel quite bleak. I don’t want others to feel that way. It’s been over a year since I started writing and I can honestly say that not once have I ever considered myself as being an inspiration and I still don’t feel like one. Throughout my ordeal, I did what I had to do to stay sane (ish), but most of all, to stay alive.
I’ll leave you with that thought! But lastly I want to say thank you to all those who wrote to the Lymphoma Association to nominate me. I am extremely touched and happy that I have made a difference, whether it’s to those who are currently going through what I had to go through, or to those who have learnt about this horrible disease by reading my blog. If I can make a difference to even one person, then I’m very happy.
Tuesday, September 10, 2013
Sunday, September 8, 2013
Post transplant update from Kat in UK
Here's an update from Kat over at The C Word blog whom I have requested prayers for in the past. Kat had her allo stem cell transplant back on May 23rd. Kat has went through pretty much a living hell since she was first diagnosed back in September, 2012. It is so good to hear that she is doing well. Her thoughts on her new post-cancer life provoked alot of thoughts and prayers for Mary Jo, Kat and all those getting on with life after successful transplants.
Broken, beat and scarred..
September 1, 2013
“What don’t kill you makes you more strong..” So the song goes.. And hell, I hope there’s some truth in that because over the last year, cancer has at times broken me, beaten me up and left me scarred. In fact I still have physical scars up my arms, my ovaries have pretty much shriveled up, packed up and said “Goodnight Vienna” and the immune system I was born with has died. But apart from that, I’m feeling quite triumphant, and despite feeling like a geriatric having done several rounds with Wladimir Klitschkp most of the time, I’m feeling quite strong.
So, where am I now? I’m in complete remission – obviously you know that from reading my previous blog entry, and although myself, my husband, my family and friends have been jubilantly celebrating this news, it hasn’t escaped me that this isn’t the end and that I’m not out of the woods – but it’s a bloody good start. To be completely out of the woods, I need my scan in November to be clear, the one after that to be clear and every other scan in the next five years to be clear. Then we can say that I’ve been cured. So although this is a great start, you’ll still occasionally find me lurking around this blog and in my own world on tenterhooks hoping for the best. Over the next 12 months, I’ll still have to be careful as my immunity will remain as fragile as a baby, I need to wait another year before I can have all my immunisations again – yep, I have to have all the ones I had as a child all over again! (Does this mean I have to battle with my conscious whether I should have the MMR immunisations? Because in theory, I am a fully developed adult and if the MMR jabs do cause problems with development in children, it shouldn’t affect me?!? Hmmm moral quagmire!)
Anyhow, it’s not the end but compared to a year ago, things are positively brighter. In fact I was diagnosed with cancer exactly a year ago and my outlook back then couldn’t have been bleaker. Moving forward, I know I will have to battle with fluctuating energy levels, focus and concentration, I will at times have to battle with my head and cope with meltdowns and I will have to be prudent with my surroundings and keep away from contagious people – but this is a very small price to pay compared to what I had to go through to get to this point.
A year ago, I didn’t think I would see 2013 and now I have breaks in Hong Kong, Scotland, Northern Ireland and Copenhagen planned between now and November. Perhaps the biggest milestone is November when I’ll be rejoining the gym and going back to work – I can’t wait to establish some of the old routine and sense of “normality” though this time, I’ll be walking into it with a whole new perspective and immune system!
I have my routine appointment at the hospital tomorrow and an hour on the nebuliser (to protect my lungs and respiratory system), so I guess it’s bed time for me. I’ll try and blog later this week for another update before I go on my first post-cancer holiday!
Broken, beat and scarred..
September 1, 2013
“What don’t kill you makes you more strong..” So the song goes.. And hell, I hope there’s some truth in that because over the last year, cancer has at times broken me, beaten me up and left me scarred. In fact I still have physical scars up my arms, my ovaries have pretty much shriveled up, packed up and said “Goodnight Vienna” and the immune system I was born with has died. But apart from that, I’m feeling quite triumphant, and despite feeling like a geriatric having done several rounds with Wladimir Klitschkp most of the time, I’m feeling quite strong.
So, where am I now? I’m in complete remission – obviously you know that from reading my previous blog entry, and although myself, my husband, my family and friends have been jubilantly celebrating this news, it hasn’t escaped me that this isn’t the end and that I’m not out of the woods – but it’s a bloody good start. To be completely out of the woods, I need my scan in November to be clear, the one after that to be clear and every other scan in the next five years to be clear. Then we can say that I’ve been cured. So although this is a great start, you’ll still occasionally find me lurking around this blog and in my own world on tenterhooks hoping for the best. Over the next 12 months, I’ll still have to be careful as my immunity will remain as fragile as a baby, I need to wait another year before I can have all my immunisations again – yep, I have to have all the ones I had as a child all over again! (Does this mean I have to battle with my conscious whether I should have the MMR immunisations? Because in theory, I am a fully developed adult and if the MMR jabs do cause problems with development in children, it shouldn’t affect me?!? Hmmm moral quagmire!)
Anyhow, it’s not the end but compared to a year ago, things are positively brighter. In fact I was diagnosed with cancer exactly a year ago and my outlook back then couldn’t have been bleaker. Moving forward, I know I will have to battle with fluctuating energy levels, focus and concentration, I will at times have to battle with my head and cope with meltdowns and I will have to be prudent with my surroundings and keep away from contagious people – but this is a very small price to pay compared to what I had to go through to get to this point.
A year ago, I didn’t think I would see 2013 and now I have breaks in Hong Kong, Scotland, Northern Ireland and Copenhagen planned between now and November. Perhaps the biggest milestone is November when I’ll be rejoining the gym and going back to work – I can’t wait to establish some of the old routine and sense of “normality” though this time, I’ll be walking into it with a whole new perspective and immune system!
I have my routine appointment at the hospital tomorrow and an hour on the nebuliser (to protect my lungs and respiratory system), so I guess it’s bed time for me. I’ll try and blog later this week for another update before I go on my first post-cancer holiday!
Video: Josh Groban sings "Brave"
I thought that I would share this video a friend sent me today. Enjoy and BE BRAVE!
Trust the Lord!
Be brave and strong
and trust the Lord.
Psalm 27:14(CEV)
Trust the Lord!
Be brave and strong
and trust the Lord.
Psalm 27:14(CEV)
Nun runs out of gas funny
There was a nun who worked as a nurse at a local hospital.
She was driving the hospital van when it ran out of gas about a mile from a gas station, so she decided to walk to the gas station to get some gas, but the station didn't have a gas can for her to transport the gas back to the van.
She walked back to the van, trying to figure out what to do when she realized that she had some bed pans in the van that she could use. So, she got a bed pan and walked back to the gas station, filled it up and walked back to the van.
As she was pouring the gas into the tank, two men in a truck drove by. One said to the other, "Man, if that works, I'm turning Catholic!"
She was driving the hospital van when it ran out of gas about a mile from a gas station, so she decided to walk to the gas station to get some gas, but the station didn't have a gas can for her to transport the gas back to the van.
She walked back to the van, trying to figure out what to do when she realized that she had some bed pans in the van that she could use. So, she got a bed pan and walked back to the gas station, filled it up and walked back to the van.
As she was pouring the gas into the tank, two men in a truck drove by. One said to the other, "Man, if that works, I'm turning Catholic!"
Saturday, September 7, 2013
Friday, September 6, 2013
When it rains it pours: More bad news for our family
I have posted a few articles about Billy, Mary Jo's nephew, and his battle with Chronic Lymphcytic Leukemia and now Richter's Syndrome. We found out today that Billy's mom, Linda, has been diagnosed with Peritoneal cancer. This is a rare cancer that develops in the peritoneum, a thin, delicate sheet that lines the inside wall of the abdomen and covers the uterus and extends over the bladder and rectum. The peritoneum is made of epithelial cells. By producing a lubricating fluid, the peritoneum helps the organs to move smoothly inside the abdomen. Linda will have surgery next week at the University of Kentucky Medical Center in Lexington to determine the extent of the cancer, and a treatment plan.
Billy will be going back to Vanderbilt next week for his second round of R-EPOCH chemo to put the Richter's Transformation in remission in preparation for an allo stem cell transplant. Since his first treatment Billy's blood levels and energy level has been low. Mary Jo is still doing well. Please pray for Billy, his mom, Linda, and that Mary Jo's mantle cell lymphoma stays away forever. Also, please pray for our friend, Steve, in North Carolina., and his wife and caregiver, Peggy. Steve will be having an auto stem cell transplant at Duke University Hospital in Durham. Steve is currently in the mobilization phase of the process. He will going to Duke for the epheresis collection soon.
When It Rains It Pours
When it rains it pours, That`s an old saying I keep telling myself I have to keep praying They say God won`t give us to much to bear I feel weighed down, But I know I`m in Gods care
Jesus has been there for me many times, He`s made me strong It rained and it poured, But Jesus was there with me all along I`ve learned each trail made me stronger, I believe even more I know in my heart, He is with us,When the rain begins to pour
I now know when it rains it pours at times, It does for sure The problems keep coming, You think you can`t take anymore Dear friends hold on to your faith, Jesus will make you strong I`ll never again lose faith, With Jesus I know I can`t go wrong
Billy will be going back to Vanderbilt next week for his second round of R-EPOCH chemo to put the Richter's Transformation in remission in preparation for an allo stem cell transplant. Since his first treatment Billy's blood levels and energy level has been low. Mary Jo is still doing well. Please pray for Billy, his mom, Linda, and that Mary Jo's mantle cell lymphoma stays away forever. Also, please pray for our friend, Steve, in North Carolina., and his wife and caregiver, Peggy. Steve will be having an auto stem cell transplant at Duke University Hospital in Durham. Steve is currently in the mobilization phase of the process. He will going to Duke for the epheresis collection soon.
When It Rains It Pours
When it rains it pours, That`s an old saying I keep telling myself I have to keep praying They say God won`t give us to much to bear I feel weighed down, But I know I`m in Gods care
Jesus has been there for me many times, He`s made me strong It rained and it poured, But Jesus was there with me all along I`ve learned each trail made me stronger, I believe even more I know in my heart, He is with us,When the rain begins to pour
I now know when it rains it pours at times, It does for sure The problems keep coming, You think you can`t take anymore Dear friends hold on to your faith, Jesus will make you strong I`ll never again lose faith, With Jesus I know I can`t go wrong
Tim McGraw and Vanderbilt UMC present "Highway Don't Care"
Vanderbilt University Medical Center is raising awareness of the dangers associated with distracted driving through its participation in the newly released video for the song “Highway Don’t Care,” performed by Tim McGraw and featuring Taylor Swift and Keith Urban. Vanderbilt LifeFlight, Vanderbilt University Hospital and the Adult Emergency Department were featured in the video, which depicts a young woman injured in a car accident as the result of texting while driving.
“We at LifeFlight unfortunately transport and treat many young patients in the prime of their lives with serious, if not life-threatening or fatal injuries that are a direct result of not focusing on the road,” said Jeremy Brywczynski, M.D., Medical Director for Vanderbilt LifeFlight and assistant professor of Emergency Medicine. “When we were approached to participate in a music video that will reach millions of youth around the country about these dangers, it was an opportunity that we could not refuse.”
Brywczynski was one of more than 20 Vanderbilt faculty and staff who participated in the video shoot, along with Jared McKinney, M.D., assistant professor of Emergency Medicine and medical director for the Event Medicine division of LifeFlight, Sean Collins, M.D., associate professor of Emergency Medicine, flight nurse Rachel Jones, R.N., B.S.N., and Bo Phillips, NREMT-P, FP-C, chief flight paramedic, with Tom Adams as pilot.
Each day in the United States, more than nine people are killed and more than 1,060 are injured in crashes that involve a distracted driver, according to the Centers for Disease Control and Prevention.
“Distracted driving, especially driving while texting, has been shown to cause a level of impairment similar to that of alcohol intoxication,” Brywczynski said.
The Vanderbilt Trauma team is raising awareness of the dangers associated with distracted driving by signing and circulating pledge cards that promise to avoid all behind-the-wheel activities that take attention away from the road. (photo by Sondra Blount)
Nurses at Vanderbilt University Medical Center’s Level-1 Trauma Center want to see an end to behind-the-wheel activities that take attention away from the road. These caregivers, who treat hundreds of seriously injured patients each year due to distracted driving, are taking a pledge to raise awareness of the dangers associated with it.
As part of National Trauma Awareness Month, recognized each May, Vanderbilt Trauma nurses are leading a campaign titled “If You’re Distracted, We’re Impacted,” an initiative of theSociety of Trauma Nurses. Pledge cards are being circulated throughout the hospital, encouraging people to avoid all distractions while driving a vehicle and spread the message to family and friends.
“As a driver, you not only assume responsibility for your own safety but the safety of your passengers, bystanders and those in other vehicles,” said Trauma Outreach and Injury Prevention Coordinator Cathy Wilson, R.N., M.S.N. “Vanderbilt’s Trauma staff have taken the pledge to refrain from distracted driving and extend this challenge to all drivers.”
Distracted driving is defined as driving while doing another activity that takes your attention away from the road, such as text messaging, talking on the phone, eating or putting on makeup. While any of these distractions can endanger the driver and others, texting while driving is especially dangerous because it combines three types of distraction: visual – taking your eyes off the road; manual – taking your hands off the wheel; and cognitive – taking your mind off what you are doing.
*Distracted driving statistics:
- Text messaging creates a crash risk 23 times worse than driving while not distracted.
- 16 percent of fatal crashes involve reports of distracted driving.
- 20 percent of injury crashes involve reports of distracted driving.
- Drivers who use hand-held devices are four times more likely to get into crashes serious enough to injure themselves.
- Sending or receiving a text takes a driver’s eyes off the road for an average of 4.6 seconds. At 55 mph, this is the equivalent of driving the length of a football field blindfolded.
- Using a cell phone while driving, whether hand-held or hands-free, delays a driver’s reaction as much as having a blood alcohol concentration at the legal limit of .08.
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