Tuesday, May 7, 2013

Mary Jo Update #28 - Blood counts down...frustration up

First of all, thanks for all of your thoughts. The power of your prayers are carrying us.

As I wrote in an earlier update, Mary Jo's blood counts are going down. Her vitals showed a WBC of .3 this morning. As her blood levels are going down, her frustration level with still being in the hospital is growing.

She finished receiving all of her stem cells today. So, the only thing keeping her in the hospital is getting her pulse rate under control. It went up in the 140's a couple of times today when she got up to go to the bathroom. They are going to bump up the heart medicine that they are giving her from 120mg to 180mg to try to lower her resting heart rate which has been usually in the 90's.

I am not so sure that this isn't something that she had before we started all of this, but no one was monitoring. Her primary care doctor prescribed blood pressure medicine for her a few years ago without any sort of testing, but it did lower her blood pressure. Her doctor had her taking her blood pressure every day to she if they needed to change her blood pressure medicine, and her heart rate was always in the 90's.

I am thinking this may have been a condition that she has had for awhile and the chemo and other drugs, along with, the extreme diarrhea that she had for several days, not eating properly, and not getting a good night's sleep in the hospital, in addition to the stress of what she is going through hasn't exacerbated a pre-existing condition.


I'm not sure if they will want to continue monitoring her in the hospital with the 180mg medicine, or not. The outpatient stem cell center is a lot more engaging socially. Than, sitting in a hospital room with no one to talk to, except for your nurse and your caregiver. Hopefully, she will be discharged and we can start going back there again soon.

Mary Jo Update #28 - Blood counts down...frustration up

First of all, thanks for all of your thoughts. The power of your prayers are carrying us.

As I wrote in an earlier update, Mary Jo's blood counts are going down. Her vitals showed a WBC of .3 this morning. As her blood levels are going down, her frustration level with still being in the hospital is growing.

She finished receiving all of her stem cells today. So, the only thing keeping her in the hospital is getting her pulse rate under control. It went up in the 140's a couple of times today when she got up to go to the bathroom. They are going to bump up the heart medicine that they are giving her from 120mg to 180mg to try to lower her resting heart rate which has been usually in the 90's.

I am not so sure that this isn't something that she had before we started all of this, but no one was monitoring. Her primary care doctor prescribed blood pressure medicine for her a few years ago without any sort of testing, but it did lower her blood pressure. Her doctor had her taking her blood pressure every day to she if they needed to change her blood pressure medicine, and her heart rate was usually in the 90's.

I am thinking this may have been a condition that she has had for awhile and the chemo and other drugs, along with, the extreme diarrhea that she had for several days, not eating properly, and not getting a good night's sleep in the hospital, in addition to the stress of what she is going through hasn't exacerbated a pre-existing condition.


I'm not sure if they will want to continue monitoring her in the hospital with the 180mg medicine, or not. The outpatient stem cell center is a lot more engaging socially. Than, sitting in a hospital room with no one to talk to, except for your nurse and your caregiver. Hopefully, she will be discharged and we can start going back there again soon.

Video: Happy New Birthday, Mary Jo!

Mary Jo Update #27 - WBC nearing zero & more pics

Mary Jo's White Blood Count (WBC) is beginning to bottom out. Her overnight reading was .3. Normal is 3.9-10.7. Over the upper limit or below the lower is not good.

There is two ways of looking at it. It's good because it indicates that the BCNU chemo that she had on Saturday is doing it's job. It's bad because she has extreme fatigue today, and she just vomited a little bit. The extreme diarrhea that she had is just about over, and they have her rate and rythym under control. They are going to adjust her heart medicine because they would like to get the heart rate a little lower.

They have changed the time for Mary Jo's second stem cell infusion from 11:30am to 1:30m CDT. It looks like they are running a little late. They just rolled in the cart with the stem cell containers. Mary Jo will be receiving the last five bags of her stem cells today.

Nurse Practicioner, Liz just arrived. So we should be starting shortly. You got to love Liz. She just passed out grape Dum Dum suckers. They are mainly for Mary Jo because the stem cell infusions cause a foul taste in the recipients mouth. To make sure that she wouldn't taste anything Mary Jo doubled up on the grape suckers. Then Nurse Jayme comes in and takes her temperature. Two suckers and a thermometer. That's a mouth full.

Below are her blood levels. Liz said that Mary Jo might be able to be discharged tomorrow, if the rest of the day goes well. Got to go. The infusions have started.


05/07/13 00:01CBC WBC0.3* thou/uL (3.9-10.7)    Hemoglobin Blood10.7* g/dL (11.8-16.0)    PCV BLOOD30* % (36-43)    MEAN PLATELET VOLUME10.1 fL (9.3-12.8)   PLATELET COUNT41* thou/uL (135-371)    Red Blood Cells3.22* mil/uL (4.00-5.50)    MCV93 fL (81-98)    MCH33.2* pg (27.0-32.0)    Mean Corpuscle Hemoglobin Concentration35.7* g/dL (31.0-35.0)    Red Blood Cells Width Distribution15.8* % (11.1-14.3)   


Here's some pictures from this mornings infusions:
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Happy Birthday, Mrs. Cornell

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I just wanted to introduce all of you to a dear friend of mind who celebrated her 100th birthday this past weekend, Mrs. Hilden Cornell. Mrs. Cornell is the oldest parishioner of our church in Mount Washington.

She has a wonderful family. That's Mrs. Cornell in the middle with her daughter, Darlene, on the right, and her granddaughter, Christal on the left.

Mrs. Cornell was a teacher in Bullitt County, Kentucky for a number of years, and now lives in the Glenridge Healthcare facility in Louisville. She is one of the most beautiful and sweetest ladies whom I have ever met.

She is a woman of deep faith, love, and trust in the Lord. She has been an inspiration to me personally. I have been blessed to know her, and share time and stories with her the last several years.

I hated to miss Mrs. Cornell's birthday party at Glenridge this past Sunday. It would be so wonderful if we could all age with the grace and dignity that Mrs. Cornell has.



Monday, May 6, 2013

Mary Jo Update #26 - Day 0: From Darkness Into Light

Just a little bit our day. Of course, this was the biggest day of the rest of our lives, Day 0, Mary Jo's transplant day. Mary Jo came through it without any complications. Since, they only infused six of the 11 bags of stem cells today. Day+1 will also be a transplant day for her.

Originally, the transplant was supposed to begin at 11am in the stem cell center. Since she was admitted to the hospital on Saturday, it was changed to 1pm today in her hospital room.

We appreciated all of the wonderful comments about the pictures that I posted earlier today. Even one of the comments that a friend from Taylorsville made that "Mary Jo was a brave woman to allow me that close to her with a syringe in my hand." I agree that Mary Jo is a brave woman, but for more reasons than just that.

Liz, the nurse practitioner's, humor made everyone at ease during the transplant. The transplant took around 40 minutes. They get plenty of practice in the hospital's stem cell center. They have 30 rooms there. I only saw three vacant.

One of the people who was with us in the outpatient stem cell clinic also had his Day 0 in the hospital. We didn't get a chance to talk to him, but he must have encountered some kind of problem, too. Him and his wife were originally from Sellersburg, IN, not too far from Louisville, before moving to Oak Ridge, TN about 20 years ago. We pray that his Day 0 went as well as Mary Jo's.

One thing that I wanted to share with you. Before we came to Nashville this time, Mary Jo read a book our social worker gave us called "Autologous Stem Cell Transplants: A Handbook for Patients" If you notice on the cover of the book below, the girl is running from the darkness of a cloudy, rainy day to the brilliant light of a sunny day.

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When Mary Jo saw the cover she said "that's what I will doing when we go back to Vanderbilt. On my transplant day, I will be running from a life of darkness full of chemo treatments, not feeling well, despair, and all of those other ugly things that cancer has brought into my life. I will be going to a life of light, and hopefully long remission. Full of hope for the future, full of doing things with our family and friends, some travel, and all those other things that we haven't been able to do since October 22 of last year when I was admitted to the hospital."

Ironically, the weather here in Nashville today fit that model of darkness to light. The morning started cloudy and rainy. Then, it cleared up just before Mary Jo's transplant. Stayed sunny for a few hours until the cloudiness and rain returned this evening.

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As some of you know, Mary Jo is a quilter. She is in the process of finishing the quilt that is shown. As you can see, on the right side there are areas where more dark pieces and light pieces are clumped together than she had planned. Rather than taking the quilt apart and separating the pieces. She is leaving it as it is. Though not intended, the darkness to light message is conveyed through the quilt pieces. For that reason, Mary Jo has named it "Our Vanderbilt Odyssey  . 

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Whether it be cancer or something else, we all have have darkness in our lives. But, the Light of the World is there to light our way out of that darkness if we have faith and trust the Way, the Truth and the Life. One of my favorite prayers is one written by Thomas Merton, who was a monk at Gethsemane Monastery in Kentucky which kind of typifies my wandering and searching.

 More to come tomorrow as Mary Jo gets the other five bags of her stem cells. I have many more pictures of today's transplant session. I will be working on a slideshow when I get a chance.

Thanks for continued prayers as we enter the recovery phase of this journey which we are told usually takes 100 days from Day 0 which would put it around August 14th. I am sure that there will be good days and bad days.

But, We will trust Him always for though we may seem to be lost and in the shadow of death, we will not be afraid because we know He will never leave us to face our perils alone. Amen


Thank you, Vanderbilt Nurses

Happy Nurses Week!





Pictures from Mary Jo's Happy New Birthday Party!!!

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6 bags of stem cells later...

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Mary Jo will get the other 5 bags of her stem cells tomorrow

Transplant Day: Let God do His work, so this will work!

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Sunday, May 5, 2013

Mary Jo Update #25 - Thank you, Jesus!

Just a short an update to today's previous post.. Mary Jo had no issues today with her blood pressure, heart rate, or rythym. She is also eating better finishing about half of her food at each meal. The diarrhea is slowly going away. Dr. Engelhardt said that he wanted her to be up and walking some. So, we made a few laps around the "penthouse".

When we see Dr. Engelhardt in the morning, we are going to see if Mary Jo can be discharged from the hospital, and receive all of her stem cell infusions in the outpatient stem cell clinic.

I did want to share one thing with you that happened in the Emergency Room yesterday afternoon. When we first got there,  two ER nurses were asking Mary Jo questions and hooking her up to a heart monitor machine. After a few minutes, an ER doctor and a cardiologist came in. When Mary Jo saw them, she laid back and closed her eyes. After awhile, she opened her eyes and, she was crying.

She told me, "Gerry, I closed my eyes and I saw the face of Jesus!" She kept crying and repeating, "I saw Jesus' face... I saw Jesus' face. What does it mean?" I can't remember her exact words, but she said something that made me think that she thought she wasn't going to make it, and Jesus was there to take her home. I tried to reassure by saying "No, that's not it. we're going to be OK. Jesus is just reminding us, that no matter what,  He's here with us." 

Mary Jo is a person of deep faith. I have often said that if she doesn't make it to heaven, I don't stand a chance. There is no doubt in my mind that Mary Jo  saw the face of Jesus as she was lying there in ER. All I can say is, Thank you, Jesus!

Mary Jo Date #24 - News from the "penthouse"

Right after I got to the hospital this morning, two transplant doctors, Dr. Engelhardt and Dr. Holder, a nurse practicioner and Mary Jo's transplant nurse, Blanche, came to visit with us. Dr. Engelhardt gave us some good news. The C-diff test was negative. Also, the Creatine Kinase (CK) and Troponin tests that were performed yesterday were also both negative. These tests were to determine if there was any heart damage from yesterday's arrhythmia episode.

Dr. Engelhardt said that this confirms their suspicion that a combination of the BCNU chemo treatment while her electrolyte, potassium and potassium levels were low compounded by the severe diahhrea that she was experiencing most likely caused the atrial fibrillation that she experienced.

Since Mary Jo has no heart damage and the medicine that they have given her has brought her pulse rate and rythym back in line, Dr. Engelhardt gave us a choice how to proceed from here. With any of the choices because her blood levels are low, Mary Jo is going to need an infusion of two units of blood today.

Here were our choices: A) Discharge Mary Jo from the hospital this morning and go to the stem cell clinic for the blood infusions. If she had another arrhythmia episode, we would have to go back to ER to be readmitted to the hospital. B) Mary Jo stay in the hospital have the blood transfusions, and have both of the stem cell infusions in the hospital on Monday and Tuesday. C) Mary Jo stay in the hospital another 24 hours where her heart rate and rythym could be monitored. Then, make a decision on Monday morning to either discharge her, and do both stem cell infusions in the stem cell center. Or, to do the first stem cell infusion on Monday in the hospital. Then, discharge her, and have the second stem cell infusion on Tuesday in the stem cell center. We definitely didn't want to make another visit to ER, if it could be avoided. So, we opted for option C to allow them to monitor her for another 24 hours.

We know that we are in good hands here. Clay Vessels, Mary Jo's nurse yesterday, actually has connections to the Fern Creek area in Louisville. His grandmother lived on Seatonville Road just past Bardstown Road. Clay was raised in the Bowling Green area where is dad stayed after graduating from Western Kentucky University. Clay also graduated from WKU. Although he said, that he is a huge Louisville Cardinal fan.

Mary Jo's first infusion has started. Hopefully, she will be able to get more rest tonight. She said that her nurse last night came in nearly every hour for something. She might be able to get more rest over at our apartment. I think the college kids have went home. It has been pretty quiet the last few nights.

Below is the view from the Mary Jo's 10th floor room in the "penthouse". Our apartment is in the brick building with the chimneys behind the brick building in the foreground. Vanderbilt's campus is to the left, out of the picture. The white buildings off in the distance are Belmont University.

Thank goodness, for a much quieter day than yesterday.

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Saturday, May 4, 2013

Mary Jo Update #23 - Mary Jo's Racing Heart And Our Trip To The ER

Well, everything was going well when I sent the last update earlier today. But, as with any odyssey the twists and turns come unexpectedly and unpredictably.

Mary Jo's dreaded diarrhea had abated somewhat. Everything went well with the BCNU chemo treatment today. She was a little flushed like she was during one of the treatments a few days ago. All the bags of chemo, potassium, hydrate, and other drugs had been disconnected. It was around 2:30pm. Plenty of time to get back to the apartment to watch the Derby.

The nurse practioner was going to let me know if she got the result of Mary Jo's C-diff test. Everything was under control. The only thing left was for Howard, the nurse's assistant, to take Mary Jo's vitals before heading back to the apartment to relax and celebrate the last round of chemo before the transplant.

Well guess what, when Howard took Mary Jo's pulse rate, our odyssey took another turn. Instead of heading to the apartment, we were heading to the Vanderbilt University Hospital emergency room. Mary Jo's heart was in atrial fibrillation. Her pulse rate was 169. Basically, her heart's upper and lower chambers weren't working together as they should.

Mary Jo had never experienced anything like this before, and she had no chest pain or shortness of breath that would indicate a cardiac problem. Dr. Eberhardt, the transport doctor, immediately ordered an electrocardiagram (ECG). Within minutes, a technician was there with the ECG machine. The results confirmed that her heart was out of rythym.

Dr. Eberhardt said that hospital transport was on the way to take Mary Jo from the stem cell center to the emergency room. The main purpose, he said, was to determine whether her heart rate was elevated because of the effect the BCNU chemo had with her electrolytes and potassium depleted, or some problem with her heart.

As I said earlier, Mary Jo had had never experienced any arrhythmia, or any kind of heart problem before, other than high blood pressure. When we got to the ER. We were met by an ER doctor, a cardiologist, and two ER nurses. They ran another ECG, and ordered a chest X-ray. They hooked up a bag of potassium, and gave her some medicine to stabilize her heart rate.

After a couple of hours her heart rate had stabilized at around 110-120 and it looked like they might release her, if things kept trending that way. But she had another episode where her heart rate shot over 180 a few times. The cardiologist came in with the bad news. They were admitting her to the hospital for observation.

The good thing was they were sending her to the oncology floor, and not to the cardiology one. Dr. Eberhardt and the cardiologist had decided that the problem was related to the BCNU's effect on Mary Jo's body while her electrolytes and potassium were low most likely from the severe diarrhea that she had for over 48 hours, which also had diminished her appetite.

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So, that's where we are now on the 10th floor of the Vanderbilt Hospital. The nurses in the stem cell center call it the "penthouse", which is a pretty accurate description. The rooms are very nice, and so are the nurses.

This is where they do the autogenoic (donor) stem cell transplants. they can't do them in the outpatient stem cell clinic where they do the autologous transplants. Also, if Medicare patients need any kind of transplant, Medicare requires that they be done in the hospital.

It was right before the start of the Derby when they came to transport Mary Jo from the ER to the oncology floor. The race was over by the time she got settled on the 10th floor. So, I still haven't seen the whole Derby race.

I did see Orb's stretch run a couple of times. Which, I guess was all of the best part of the race. Half of my Exacta box with Goldenscents came in. I just had Orb matched with the wrong Goldensomething. Golden Soul finished second.

They did notify us of one thing about the transplant today. Since her stem cells were collected with several collections over three days.The stem cells from 29 colections are stored in 3 bags. Each bag has a preservative in it, and they don't want to put all of that preservative in her body during a 24 hour period. So, they will be giving her stem cells back to her on Monday and Tuesday.

I asked them, if she would have two re-birthdays then. They said that she could still count Monday, May 6th as her new birthday. Well tomorrow is another day here in Vandy World. If everything continues as it is right now with her hear rate stabilized at around 75-82, we expect to be back in the stem cell center, at some point, tomorrow for her appointment there. I guess we will find out the results of her C-diff test then.  I will write again tomorrow. I am hoping for less excitement.

Please keep praying. No telling what twists and turns lie ahead "On Our Vanderbilt Odyssey." May God bless all of us.

For all those fighting the battle with Breast Cancer and all of the survivors


Mary Jo Update #22 - Derby Day: Mint Juleps Or BCNU?

Happy Derby Day!  

Who needs those "wonderful" Kentucky concotions called mint juleps when you can get a 395mg dose of good ole Tennessee BCNU on Derby Day. They just hooked up Mary Jo's last bag of chemo before the transpant. So, I guess that she's stuck with today's chemo cocktail called BCNU.  From looking at the side effects, it is last, but certainly, not the least. Mary Jo's nurse, Gwen, mentioned that the BCNU might make her feel loopy. So, it truly is a chemo cocktail. A green plastic bag covers the bag of BCNU to protect it from light. It is a three hour drip. Although, you cannot tell it from the picture. The YUCKINESS level has decreased considerably. Mary Jo really does feel better this morning. The diarrhea has slowed down. They are testing a stool sample to make sure that she does not have Clostridium Difficile more commonly called C-diff. 

Your body has lots of "good" and necessary bacteria.  It also has some "bad" or dangerous bacteria.   C-diff is a "bad"bacteria.  Fortunately, when you are healthy and not taking antibiotics, the millions of good bacteria in your system keep the C-diff under control and in smaller numbers.  However, when you take an antibiotic, the levels of good bacteria are reduced down to a smaller number.  If your C-diff is strong and doesn't get killed by the antibiotic along with the good bacteria, then it is possible that the c-diff will overpopulate inside your intestine or colon.   When this happens, you may get the illness called clostridium difficile colitis when C-diff has taken over. Hopefully, the test will prove to be negative. I think they want to make sure that all the "good bacteria" hasn't been flushed away by the severe diarrhea that she has had for the last 48 hours.

I hope that everyone gets to cash some tickets today. More to come later.

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BCNU

Class: Chemotherapy
Generic Name: Carmustine (kar-MUS-teen),

Trade Name: BiCNU®
For which conditions is this drug approved? Carmustine is FDA approved for the treatment of the following conditions: several types of brain tumors (including glioblastoma, brainstem glioma, medulloblastoma, astrocytoma, ependymoma and metastatic brain tumors); multiple myeloma in combination with prednisone; recurrent Hodgkin’s lymphoma in combination with other agents; recurrent non-Hodgkin’s lymphoma in combination with other agents. It is important for patients to remember that physicians have the ability to prescribe medication for conditions other than those for which the drug has been approved by the FDA. Patients who have received a prescription of this drug for a condition other than which it is approved may wish to discuss this issue with their physician.

What is the mechanism of action? Carmustine belongs to a group of drugs referred to as nitrosoureas. Carmustine produces its anti-cancer effects by causing chemical reactions that result in damage to both DNA and amino acids in a cell. The DNA and amino acid damage caused by carmustine ultimately result in cell death.
How is carmustine typically given (administered)? Carmustine is given intravenously (into a vein), and the dose depends on several factors, including the condition being treated, the size of the patient, the particular regimen being used and the overall health of the patient. Carmustine is also produce in a wafer form that can be directly implanted into the brain (see Gliadel® wafer). Carmustine is unique from several chemotherapy agents in that it is able to pass through the blood-brain barrier (a protective barrier surrounding the brain and spinal cord).
How are patients typically monitored? Patients will usually have scheduled meetings with their healthcare provider while they are being treated with carmustine. Typically, blood will be drawn to check levels of blood cells and to monitor functions of some organ systems such as the liver and kidneys. Patients may also undergo physical examinations, scans or other measures to assess side effects and response to therapy. Although uncommon, treatment with carmustine may cause serious damage to the lungs. Therefore, pulmonary function tests may also be performed prior to treatment and during treatment with carmustine. Blood pressure is typically monitored during administration.
What are the common (occur in 30% or more of patients) side effects of treatment with carmustine?
• Low white blood cell levels – increases risk of infection
• Low platelet levels – increases risk of bleeding
• Nausea and vomiting
• Pain or burning at administration site, usually associated with rapid infusion rate
• Redness of face, skin flushing, usually associated with rapid infusion rate
What are the less common (occur in 10% to 29% of patients) side effects of treatment with carmustine?
• Abnormalities in liver function levels as determined by blood tests; hepatic disease with high dose therapy
• Low red blood cell levels  – increases risk of anemia and transfusions
• Dizziness
• Loss of balance or coordination
• Abnormalities of the eye  (redness, visual changes)
• Reduced blood pressure
This is not a complete list of side effects. Some patients may experience other side effects that are not listed here. Patients may wish to discuss with their physician the other less common side effects of this drug, some of which may be serious.
Some side effects may require medical attention. Other side effects do not require medical attention and may go away during treatment. Patients should check with their physician about any side effects that continue or are bothersome.
What are the possible late side effects of treatment with carmustine? With the use of this drug, there is risk of developing side effects months or years after treatment has been completed.  In some instances a secondary malignancy may occur as a result of receiving carmustine.  A secondary malignancy is a new cancer that is unrelated to the cancer that was initially treated. Secondary malignancies occur as a result of previous treatment with radiation or chemotherapy. Sterility may also occur as a result of treatment with carmustine. In addition, damage to the lungs can occur years following treatment. Patients should discuss these late side effects with their physician.
What can patients do to help alleviate or prevent discomfort and side effects?
• Pay careful attention to the physician’s instructions and inform the physician of any side effects.
• Maintain adequate rest and nutrition.
• Wear sunscreen and protective clothing and try to minimize sun exposure.
• Drink plenty of fluids. (Patients should ask their physician about the amount of liquid to consume during a day.)
• If possible, avoid large crowds or people who are sick or not feeling well, as this drug may leave some patients susceptible to infection.
• Wash hands often to reduce the risk of infection.
• Avoid activities that may cause injury or bruising.
• Use a soft toothbrush and an electric razor to prevent cuts on the mouth or skin.
• Eat small meals frequently to help alleviate nausea.
Are there any special precautions patients should be aware of before starting treatment?
• Patients should inform their physician if they are pregnant, breastfeeding or planning a family in the near future. This drug may cause birth defects. It is important to use some kind of birth control while undergoing treatment. Also, patients may want to talk to their physician if they are considering having children in the future, since some drugs may cause fertility problems.
• It is important that patients inform their physician of any pre-existing conditions (chicken pox, heart disease, kidney disease, liver disease, lung disease, etc.) as they may worsen with this drug.
• Patients should inform their physician of any other medication they are taking (whether prescription or over-the-counter, including vitamins, herbs, etc.) as they may interfere with treatment.
• Patients should check with their physician before starting any new drug or nutritional supplement.
• Patients should inform their physician of any known drug or food allergies or any reactions to medications they have experienced in the past.
• Since this drug can cause dizziness or loss of coordination, patients should refrain from driving or operating heavy machinery until their response to therapy with carmustine has been established.
When should patients notify their physician?
• Fever
• Chills
• Flu or cold-like symptoms
• Signs of infection – redness, pus, swelling, tenderness
• Sore throat
• Severe, prolonged fatigue
• Unexplained bleeding (nosebleeds, blood in urine, black tarry stools, bruising, etc.)
• Visual changes
• Hearing changes
• Dizziness, loss of balance
• Yellowing of skin or eyes
• Change in color or urine or stool
• Swelling of ankles, feet or face
• Persistent nausea and vomiting
• Difficulty breathing

New Drugs: Why So High?




Ibrutinib, idelalisib, GA-101 (aka obinatuzumab - if I got that right), ABT-199, etc. The tidal wave of new drugs is exciting because we will soon be treating the disease with therapies that are very effective and lack many of the side effects of chemotherapy. These are some of the exciting new drugs coming soon for patients with CLL and NHL. Unfortunately they will probably also break the bank. I bet that ibrutinib costs about $150k per year... that is my prediction.

CML is a leukemia that has a lot in common with CLL. It is a slow cancer that affects about 10k new patients per year. Historically (before the year 2000) patients lived a number of years (3-5) with the disease and put up with a bunch of lousy chemotherapy drugs that didn't do much. Eventually the disease took on a nasty personality (like richter's transformation) and the patient died of "blast crisis."

That all changed in 2000 when a new "wonder pill" called Gleevec made the disease vanish from patients blood. A single, once a day medication literally changed overnight what it meant to hvae the diagnosis of CML. Newer, more sensitive molecular tests were required to even detect the disease that could no longer be seen by standard tests like, "cytogenetics." Sounds familiar right?

Gleevec cost about $40k/year when it first came out (we can talk about how much that price has risen later). While that number seems extremely high - it is inexpensive compared to many of the new drugs for cancer.

Why so high?

Read entire article here:

http://www.cll-nhl.com/2013/05/how-expensive-are-new-drugs.html



The time to relax is...

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Friday, May 3, 2013

Mary Jo Update #21 - YUCKIE!!!

Yuckie was a word that our children used to describe how they felt after they "forgot" during the potty training period of their lives. That is a nice way of describing how Mary felt today after completing her fouth 9-10 hour day of chemo. 

The worst part today has been severe diarrhea. The nausea has been coming and going, and the fatigue is ever present. By the time we get back to the apartment, Mary Jo is totally wiped out, to the point, that she is too tired to eat anything even if she wanted to.  She eats after a nap.

Tomorrow the chemo changes to the one that completely wipes out her bone marrow before the transplant on Monday. Saturday will be a shorter day, 5-6 hours. We go to the stem cell center for awhile on Sunday morning. Then, rest up for Monday. 

The chemo that she has had so far has lived up to it's terrible reputation, much worse than the CHOP and DHAP that she had back home. It will be a relief when she she gets her stem cells back on Monday, and her body can begin the long process of recovery and getting back to normal. 

One good thing happened today. We were able to visit with Mary Jo's nephew, Billy, and his friend and caregiver, Rita. Billy was at Vanderbilt for a CT Scan and other tests. The clinical trial using the formerly experimental drug, Ibrutinib, has ended. But, the FDA has given Ibrutinib a breakthrough status which makes the drug available to patients with Chronic Lyphocytic Leukemia (CLL) which Billy has, Mantle Cell Lymphoma (MCL) which Mary Jo has, and Waldenstrom macroglobulinemia (WM) which is another type of non-Hodgkin lymphoma (NHL). It is anticipated that the drug will be generally available to these patients by the Fall of this year.

It hasn't been determined how long Billy will be taking the Ibrutinib capsules. At some point, he may be in line for an allogeneic stem cell transplant using his sister, Amy's, stem cells. Please keep Billy in your prayers as he continues his own battle with cancer.

I thought that one of the Louisville TV stations would be streaming Kentucky Oaks coverage online today, but none of them were. Wow! 47 year old jock, Mike Smith, wins on 39 to 1 Princess of Sylmar. We didn't get to the apartment until after the Oaks was ran. I watched a replay. Maybe, 50 year old Gary Stevens will win the Derby tomorrow on Oxbow for us old timers. Oxbows odds are only 33 to 1. They said that we would get out of the clinic before 2pm tomorrow. So, we shouldn't miss any of the Derby.

Here's another inspirational video with Kelly Clarkson's song. This one is from Seattle Children's Hospital:



The little guy on the dune buggie vehicle reminded me of little Cole here at Vanderbilt. Cole finished his second of five weeks of radiation. Keep Cole and his Mom in your prayers, too.

Thursday, May 2, 2013

Mary Jo Update #20 - The Lows And Highs Keep Coming

As you may have read on my earlier post this morning, Mary Jo was feeling better today. She slept much better last night. We are hoping that the Vanderbilt students who live here who are having end of semester parties every night are going to Louisville for the Derby this weekend. Mary Jo's rash or flushing went away over night. We watched George Jone's funeral all morning on TV at the stem cell center. All the local stations broadcast the funeral live. It was quite a tribute and music show.



Things changed rapidly this afternoon. Giving this day it's own share of drama. I have never seen someone's body have so many reactions in a short period of time. Everything was going smoothly. Mary Jo's nurse for the day, Mary, told me that I needed to get out of there for awhile. I must have looked hungry. So, I was going to walk over to the apartment for lunch, and hit the exercise room for awhile. Suddenly, Mary Jo said that I better stay for awhile. Her complexion had changed from normal to pale and pasty. She had broking out in a cold sweat.

Mary, the nurse, came back in and quickly took Mary Jo's vitals. Her blood pressure had dropped to a dangerous level, 64/38. After a couple of minutes, Her blood pressure started going back up and was back to normal almost as fast as it went down. Thank goodness she has not been taking her blood pressure since we have been back down here because her readings have been in the 105/75 range
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About an hour after the blood pressure drop, her she started having severe stomach cramps and an episode of vomiting. Luckily, a trash can was close. Things settled down for awhile then and Nurse Mary took the stitch out of the incision where they installed the catheter and changed the dressing. They always take Mary Jo's vitals when we come in the morning and when we leave in the afternoon.

By this time, her blood pressure had risen to 144/87, and she was feeling nauseous again. The nurse said that she would rather deal with the slightly high blood pressure than the likes of 68/34. They gave her a low dose of ativan intraveneously. Since it works so fast when given that way, they advised us to walk quickly back to the apartment. She has mostly slept since we got back here.

Hopefully, the last round of Etoposide and Cytoxan will go smoother thsn the last couple of days. But, the nurses have all said that the reactions that Mary Jo has been having are normal, and not nearly as bad as some people have. You just hate to see someone who you love have to go through it.

 I'm not sure if I talked about this in an earlier post, or not. When we were in the University Hospital Operating Room on April 12th to have her catheter put in. The nurse there said that they had just put in a catheter for a woman who was here for a stem cell transplant and she was from Louisville. Of course, because of HIPPA laws they could not give us the woman's name or any information about her. Well, today we ran into her at the stem cell center. Her name is Brenda and she had her transplant this past Monday, April 29th. Brenda looked great, and she said that she was feeling great.

After we talked for awhile, we found out that Brenda plays in a Pickleball League at Sawyer Park with a friend of ours. We are praying for a quiet Friday where we can kick back and watch streaming video online from Churchill Downs on Kentucky Oaks Day. To all of my friend who contribute to the ponies' oat fund, good luck this weekend. I'm betting on a Goldenscents/Orb Exacta box. I'm betting Rick Pitino's run of luck will continue. Thanks again for your thoughts and prayers.

 In my never ending search for inspiring material for the blog, Kim, one of Mary Jo's nurses, put me on to this inspirational video. The name of the young lady in the video is Megan, and the gentleman dancing with her is Jeff. Megan is 24 years old and has Refractory Hodgkins Lymphoma. They were being treated at the University of Pennsylvania Cancer Center in Philadelphia. Enjoy. If you have watched a friend or family member fight a battle with some kind of cancer, you are permitted to cry.

 

 Last, but not least, some friends of ours put this picture of the Champs in the Derby Parade tonight on Facebook. Thanks, Melinda and Russ.

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Mary Jo Update #19 - MJ Feeling Better This AM ~ RIP George Jones

Mary Jo is feeling much better this morning. She slept much better last night, and the rash has went away. The nurse practioner said that the redness was most likely flushing from the steroids that she is being given, or a combination of both, rather than strictly a reaction to the chemo since it disappeared over night.

These first four days of chemo are like marathons. They start her off with 2 100ml bags of hydration (sodium chloride) at 7:30am. After about an hour, they start her on the Etoposide and then the Cytoxan. They unhooked the IVs from her catheter at around 4:30pm yesterday. A very long day.

They are going to change the dressing on her catheter today. The dressing is supposed to be changed every seven days. It was changed in the oncoligist's office in Louisville last Thursday. She is taking an antbacterial antibiotic called Ceftin daily until the Hickman catheter is removed after the transplant .

They are also going to take out the stitch that was put in when the catheter was installed. They want to do this before her platelet level drops, and even minor bleeding can become serious.

I hope that the weather prognosticators are wrong about the forecast for Derby Day. Our yougest son, Brent, is a Louisville Metro Police officer. He is assigned to the infield detail at Churchill Downs for the first time this year in his 13 years as a police officer. It could be because of increased security this year. Brent is also on the riot squad.

The rain might cut down on the size and the exuberance of the normally rowdy infield crowd. Praying that for a great and safe Derby.

This is a sad day in Nashville, George Jones' funeral is at the Grand Opry House at 10am. Here's a tribute to the The Possum. More on our day later.




Wednesday, May 1, 2013

Mary Jo Update #18: From Derby "Hat" Fun To Grappling With Reality

We got to the hospital early this morning for Mary Jo's second chemo treatment with Cytoxan and Etoposide. We are trying to get the folks down here into the proper spirit for Derby Week. Mary brought some Derby pins back with her this week. She has been giving them to the doctors and nurses who have been taking care of her.

We were talking to Mary Jo's nurse, Alice, about yesterday's blog post "Chemo Cocktails and "Peeing In The Hat", and how the toilet hat used for measuring output could be transformed into a Derby hat. Alice used her ingenuity to try to accomplish this with Mary Jo's "hat". Alice even  put a likeness of a Derby horse on the hat with Mary Jo's initials. 

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A little later in the morning a wonderful gentleman named Bob Lauderdale, who is a volunteer at Vanderbilt Hospital, asked if he could play a some music for us. Mr.Lauderdale played the hamonica and the guitar at the same time. He played a couple of Civil War era songs and Moon River for us.

I can remember watching the Andy Williams Show many, many years ago and hearing him sing "Moon River". Definitely, one of my favorites.



As the day went along, the hours and hours of infusion with hydration and the chemo drugs started to take their toll on Mary Jo. She got tireder and tireder. Her face became puffy, and a skin rash developed from her face to her midriff. She also had some pain in her adominal area. These are side effects of both Cytoxan and Etoposide.

Chemo drugs are like being in the ring with a big, savvy, heavyweight boxer. They don't have that lightning speed knockout punch. They just keep hitting you with those solid body punches. One after another, round after round, they finally take their toll.

When we got back to the apartment, Mary Jo ate a little bit for dinner and went to bed. We will back bright and early tomorrow to go a few more rounds with that tag team heavyweight called Etoposide and Cytoxan. We rely on our faith and trust in God, ourselves and the transplant process to carry us through. We got to get up and move forward, if we are gonna fly.

Please keep those prayers coming we need them more than ever. The first two rounds have shown us that we are in a tough fight here.

Life Is Too Important...

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