Lymphoma Abbreviations and Acronyms

Below is a list of frequently used and commonly understood acronyms which are used on many on-line lymphoma forums. 

Link to Chemotherapy protocol acronyms 

Link to common Medical abstract abbreviations

Link to Oncology group acronyms

Link to acronyms about remission status

• AFIP - Armed Forces Institute of Pathology (no longer exists) (Washington DC)
• ALLO - Allogeneic (A type of transplant where someone donates the stem cells or bone marrow)
• AUTO - Autologous (A type of transplant where the patient donates their own stem cells or bone marrow)
• BMB - Bone Marrow Biopsy
• BMR - Basal Metabolic Rate (BMR is also a chemotherapy protocol)
• BMT - Bone Marrow Transplant
• BTW - By The Way
• CBC - Complete Blood Count
• CHEMO - Chemotherapy
• CINV - Chemotherapy Induced Vomiting and Nausea
• CLL - Chronic Lymphocytic Leukaemia (see also SLL which is the same disease)
• CNS - Central Nervous System
• CR - Complete Remission
• CSF - Cerebral-Spinal Fluid
• DIFF or Differential - a count of all the individual white blood types not just a total count. (Done during a CBC)
• DLI - Donor Leukocyte Infusion (or Donor Lymphocyte Infusion)
• DX - Diagnosis
• ENT - Ears Nose and Throat specialist
• FAQ - Frequently Asked Questions
• FIL - Father-in-law (MIL mother-in-law)
• FISH - Fluorescence In Situ Hybridization A process which vividly paints chromosomes or portions of chromosomes with fluorescent molecules. This technique is useful for identifying chromosomal abnormalities and gene mapping
• fNHL - Follicular Non-Hodgkin's Lymphoma
• FYI - For Your Information
• G-CSF - Granulocyte colony stimulating factor (stimulates white blood production)
• GM-CSF - Granulocyte Macrophage colony stimulating factor
• GVHD - Graft Versus Host Disease
• HAMA - Human Anti-Mouse Antibody
• HEMONC - Haematologist/Oncologist
• IMHO - In My Humble Opinion
• IMO - In My Opinion
• LDH - Lactate Dehydrogenase
• LOL - Laughing Out Loud
• MDA - MD Anderson cancer centre in Texas
• MALT - Mucosa-Associated Lymphoid Tissue (a type of  lymphoma of mucous producing tissues)
• MOAB - Monoclonal Antibody (Drugs like Rituxan, Zevalin, Bexxar, Lymphocide etc)
• MSK - Memorial Sloan Kettering cancer centre in New York. 
• MUD - Matched Unrelated Donor (a type of allogeneic transplant with a donor not related to patient)
• NED - No Evidence of Disease
• ONC - Oncologist
• PBSCT - Peripheral Blood Stem Cell Transplant (see also SCT)
• PCR - Polymerase Chain Reaction (a method for growing vast quantities of DNA from as little as a single cell so it can be tested)
• PICC - Peripherally inserted central catheter
• PMH - Princess Margaret Hospital in Toronto 
• PR - Partial Remission
• PTLD - Post Transplantation Lymphoproliferaltive Disorder (getting NHL after an organ transplant)
• RIT - Radio Immuno Therapy (radioactive antibodies)
• ROTFL - Rolling On The Floor Laughing
• RX - Prescription
• SCT - Stem Cell Transplant (same thing as PBSCT)
• SLL - Small lymphocytic lymphoma (see also CLL which is the same disease)
• SO - Significant Other
• TBI - Total body irradiation (often used as part of a transplant)
• TPN - Total Parenteral Nutrition
• TX - Treatment
• WBC - White Blood Count
• WYSIWYG - What You See Is What You Get

Oncology group acronyms

• GLSG: German Low Grade Lymphoma Study Group
• GOELAMS: Groupe Ouest Est des Leucemies et des Autres Maladies du Sang  (Western and Eastern Group of Leukaemias and Other Blood Diseases)
• DSHNHL: German High Grade Non-Hodgkin's Lymphoma Study Group
• SWOG: South Western Oncology Group
• CALGA: Cancer and Leukemia Group A
• CALGB: Cancer and Leukemia Group B
• GELA: Groupe d'Etude des Lymphomes de l'Adulte
• ECOG: Eastern Cooperative Oncology Group
• EORTC: European Organisation for Research and Treatment of Cancer
• GELCAB: Grup per l'Estudi dels Limfomes de Catalunya i Balears

Common abbreviations used in medical abstracts

• FFS - Failure free survival 
• EFS - Event free survival (something bad happened, not necessarily NHL) 
• OS - Overall Survival (% alive at some given endpoint)
• ORR or OR - Overall Response Rate (% of people who had any response) 
• TTF - Time to Failure (Time until failure occurred, NHL returned or therapy stopped working)
• TTP - Time to progression, same as above
• PFS - Progression Free Survival (Time until NHL came back) 
• CR - Complete response (or complete remission) 
• CRu - Complete response unconfirmed. 
• PR - Partial response ( >50% reduction) 
• TRM - Transplant Related Mortality
• QOL - Quality of Life 
• CI - Confidence Interval (how sure are they their results are accurate)

Cancer? I don't deserve this!

From Cancerwise, The University of Texas MD Anderson Center

By Brandie Sellers

A constant theme in my brain and body for the past several months is the struggle to figure out how to be a "regular" person after cancer treatment. 

It feels like people expect me to be "normal" now that I'm out of cancer treatment. I expect that of myself, too.  

By and large, people have stopped asking how I am and if I needed help, and moved on with their lives. Yet, I feel a bit stuck.

Have we earned this?

All of this brings me around to the idea of deserving. I grew up with the idea of deserving from my grandmother. 

She does one good deed a day so she can get into heaven. 

My mom always bought extra fries at the drive-through because we deserve it. 

We're taught that if we work hard we'll have nice things. If we go to college, we'll get great jobs. 

We deserve those things because we've earned them. But have we really? 

Do we need to earn anything? What if we get all the value we need just by being born and don't have to prove or earn a thing?

Reaching this moment

This brings me to catsup, also known as ketchup. A good friend uses the following analogy for religion and spirituality. 

There are many brands of catsup at the store. But they're all catsup. 

Most religious traditions point to a divine being. And, no matter which catsup you eat -- no matter how you think -- we all came to be at this exact moment in time. It's pretty remarkable. 

I'm astounded when I think that I'm here today because of a sperm and an egg - the smallest and largest human cells, respectively - coming together. I did nothing to earn this moment.

Why the deserving story isn't true

If that deserving story were true, nobody would get cancer in the first place. Maybe bad people would, but not children, dads, moms and twenty year olds. 

Not people who are doing amazing things in the world, or people who are just living quiet lives. 

Nobody said I deserve to live a pain-free life. We all have our pain and our interruptions, bumps and rewinds and fast-forwards. 

"I'm here to shine my light"

I don't notice the pain so much if I drop the idea of deserving and the expectation that I can live like a "normal" 39-year-old and instead focus on what's still lovely in my life: the curl that my son Isaiah's hair makes at his temple, the way I'm shocked to see a young woman when I look at my daughter, Grace, or the way my other son, Caleb, looks at me with those enveloping eyes. 

I'm going to keep looking for the good parts and sharing my story because I'm sure of this one thing: I'm here to shine my light.

Brandie Sellers teaches yoga, meditation, nutrition and cooking. She paints, writes, runs and plays with her children. She is a divorcee and two-time breast cancer survivor who's undergone a double mastectomy. 

Brandie is crazy about her three children, and is blessed with a slew of sister friends who pick her up when she's down, keep her honest with herself when she's full of it, and make her laugh until she cries. Follow her at simplelifeyoga.com.

Read more posts by Brandie Sellers

Journaling: Navigating your way through a cancer journey

From Cancerwise, The University of Texas MD Anderson Center

By Crystal McCown, social work counselor fellow

Navigating your way through a cancer journey can be tough. It can be hard to find time to care for your body, spirit and mind.

Journaling is one way patients can care for themselves. Writing down your thoughts gives you an opportunity to work out your feelings and emotions, which may help you relax and find reasons to be happier and more hopeful about the future.

Methods of journaling
There are many different types of journaling. Here are a few you might want to explore:

• Gratitude journaling: Write down everything you're grateful for. This focuses your attention on positive aspects of your life.
• Blog: A blog is a website that you can easily update by writing short posts.  Blog posts can be as simple as commentary on your day-to-day life and treatment, or reflection pieces exploring your life's purpose or connecting with a higher power.
• Stream-of-consciousness writing: Write down everything that comes to your mind. This unstructured, unedited writing will reflect your raw thoughts and observations.
• Art journaling: Draw, doodle or scrapbook what you're feeling and thinking.
• Line-a-day journaling: Limit yourself to a single line or sentence for the day.

Benefits of journaling
There's no wrong way to journal. Research shows that taking as little as 20 minutes a month for 3 months, to write, will produce long lasting benefits to your physical and emotional health.

Journaling can help you sleep better, reduce fatigue and help you adjust psychologically to a cancer diagnosis and treatment.

• Look for the positive: Journaling can help you identify positive situations or events that have unfolded due to your cancer diagnosis. You may have been reunited with a loved one, received an outpouring of support from friends, co-workers and family, or been able to warn others about dangerous lifestyle habits. Documenting these areas in writing may help you explore and appreciate them more.
• Look for what you can control: Journaling can also help you map out and decide what things you can and do have control over and how you can use that knowledge in your life. 
• Find peace in your relationships: Journaling privately can even help with your day-to-day social interactions. Disclosing your deepest feelings in writing might prepare you to have a difficult conversation with a loved one, or it might allow you to simply enjoy your time together without worrying about nagging negative thoughts. 

Tips for journaling
Think about these tips when you start journaling.

• Journal for yourself. There is no wrong way to do it as long as it is beneficial to you.
• Find a quiet space. Make sure you journal during a time you know you won't be interrupted for at least 20 minutes. Find a safe, secure and comfortable area to work.
• Protect your thoughts and writings. If writing by hand, keep your journal in a safe spot where someone won't spill something on it or read your thoughts without your consent. If you are typing your journal, password protect the document to keep it away from prying eyes. 
• Don't worry about grammar, spelling or sentence structure. No one will read this without your consent, so it doesn't have to be perfect. Focus on the subject of your writing: What are you feeling? What thoughts come to mind as you recall these events? What do you want to make sure you don't forget?
• Seek professional help. If journaling about experiences and emotions leaves you more upset than relieved, meet with a social worker or mental health professional and use your journal to introduce what's bothering you. If you're receiving cancer treatment at MD Anderson, reach out to your assigned social worker for additional guidance and help. 

Chemotherapy Regimens

Here is a list of the most common chemotherapy regimens used for non-Hodgkin's lymphoma.

The names in brackets are alternate names for the drug. Most often the Brand name.  For example Doxorubicin is known by the brand name of Adriamycin which is why it often appears as the letter A and not D. (It also appears as the letter H since its longer name is Doxorubicin Hydrochloride)

Note: Although it is not shown in some of the protocols listed below Rituximab (Rituxan) is usually included for all chemotherapy regimens for B-cell lymphomas.

2-CDP	2- Chlorodeoxyadenosine
ABVD	A = Doxorubicin (Adriamycin)   B = bleomycin V = vinblastine D = dacarbazine
BACOD	B = Bleomycin  A = Doxorubicin (Adriamycin)  C = Cyclophosphamide  O = Vincristine  D = Dexamethasone
BEAM	B = Carmustine (BCNU)   E = Etoposide (VP-16)   A = Cytarabine (ARA- C)   M = Melphalan
BMR	B = Bendamustine  (Treanda) M = Mitoxantrone (Novantrone)   R = Rituxan
BEACOP	B = bleomycin   E = etoposide   A = doxorubicin (adriamycin)   C = cyclophosphamide  O = vincristine (oncovin)   P = procarbazine   P = prednisone
BR	B = Bendamustine (Treanda) R = Rituximab
BuMelTT	Bu = Busulfan   Mel = Melphalan   TT = Thiotepa
CBV	C = Cyclophosphamide   B = Carmustine (BCNU)   V = Etoposide (VP-16)
CEOP	C = Cyclophosphamide   E = Epirubicin   O = Vincristine (oncovin)   P = Prednisolone
CEPP	C = Cyclophosphamide   E = Etoposide (VP-16)   P = Procarbazine   P = Prednisone
CHOP	C = Cyclophosphamide   H = Doxorubicin (adriamycin or Doxorubicin Hydrochloride  O = Vincristine (Oncovin)   P =  prednisone
CHOP-R or R-CHOP	CHOP as above, with Rituxan added
CMF	C = Cyclophosphamide   M = Methotrexate   F = fluorouracil
CNOP	C = Cyclophosphamide   M = Mitoxantrone (novantrone)   O = Vincristine (Oncovin)   P = Prednisone
CODOX-M	C = Cyclophosphamide O = Vincristine (Oncovin) DOX = Doxorubicin (Adriamycin) M - high dose Methotrexate
CODOX-M /  IVAC	C = Cyclophosphamide O = Vincristine (Oncovin) DOX = Doxorubicin (Adriamycin) M - high dose Methotrexate alternating with IVAC I = Ifosphamide V = Etoposide (VP-16) AC = high dose Cytarabine (ARA-C)
COPADM	C = Cyclophosphamide   O = Vincristine (Oncovin)   P = Prednisolone   A = Doxorubicin (adriamycin)   M = Methotrexate
COPP	C = Cyclophosphamide   O = Vincristine (oncovin)   P = procarbazine   P = Prednisone
CVP	C = Cyclophosphamide   V = Vincristine (oncovin)   P = Prednisone
CYVE	CY = ARA-C (Cytarabine)   VE = Etoposide (VP-16 or Vespid)
DHAC	D = Dexamethasone    H = Doxorubicin (adriamycin or Doxorubicin Hydrochloride) A = ARA=C    C = Carboplatin
DHAP	D = Dexamethasone (Decadron)   HA = High dose Ara- C (Cytarabine)   P = Cisplatin (platinum)
DICE	D = Dexamethasone   I = Ifosfamide   C = Cisplatin   E = Etoposide
DVP	D = Daunorubicin   V = Vincristine   P = Prednisolone
EPOCH	E = etoposide   P = prednisone   O = Oncovin (Vincristine)   C = Cyclophosphamide   H = Doxorubicin (adriamycin or Doxorubicin Hydrochloride)
ESHAP	E = Etoposide   S = Methylprednisolone (solu medrol)   HA = High dose ARA-C (Cytarabine)   P = Cisplatin (Platinum)
FCM	F = Fludarabine   C = Cyclophosphamide   M = Mitoxantrone
FND	F = Fludarabine   N = Mitoxantrone (Novantrone)   D = Dexamethasone
FND+R	Same as above but with Rituxan added
HyperCVAD	HyperC =  Hyperfractionated Cyclophosphamide,   V = Vincristine (Oncovin)   A = doxorubicin (Adriamycin)   D = dexamethasone
ICE	I = Ifosfamide   C = Carboplatin   E = Etoposide
MACOP-B	M = Methotrexate   A = Doxorubicin (Adriamycin)   C = Cyclophosphamide   O = Vincristine (Oncovin)   P = Prednisone   B = Bleomycin
Magrath protocol	Too complicated to list here so download the document explaining it
MIME	M = Mesna (alternative protocol uses Mitoguazon   I = Ifosfamide   M = Methotrexate   E = Etoposide
R-MVP	R = Rituxan M = Methotrexate V = Vincristine (Oncovin) P = Procarbazine
MINE	M = Mesna   I = Ifosfamide   N = Mitoxantrone (Novantrone)   E = Etoposide (VP-16)
MOPP	M = Mustine   O = Vincristine (oncovin)   P = Procarbazine   P = Prednisolone
PACE	P = Cisplatin (Platinum)   A = Doxorubicin (Adriamycin)   C = Cyclophosphamide   E = Etoposide (VP-16)
PEP-C	P = Prednisone   E = Etoposide   P = Procarbazine   C = Cyclophosphamide  (low doses of each daily)
PMitCEBO	P = Prednisolone Mit = Mitoxantrone (Novantrone) C = Cyclophosphamide E = Etoposide (VP-16) B = Bleomycin O = Vincristine (Oncovin)
PROMACE CYTABOM	Promace part consists of   PRO = prednisone   M = methotrexate   A = Doxorubicin (Adriamycin)   C = Cyclophosphamide   E = Etoposide   Cytobom consists of    CYTA= Cytarabine   B = Beomycin   O = Vincristine (oncovin)   M = Methotrexate
RICE	R = Rituxan   I = Ifosfamide   C = Carboplatin   E = Etoposide (VP-16)
SMILE	S = Steroid (Dexamethasone) M = Methotrexate I = Ifosfamide L = L-asparaginase E = Etoposide
VACOP-B	V =  Etoposide (VP-16   A = Doxorubicin (Adriamycin)   C = Cyclophosphamide   O = Vincristine (Oncovin)   P = Prednisone   B = Bleomycin

The Wild Story How Cancer Drug, Ibrutinib, Was Developed

My wife, Mary Jo's nephew, Billy, is in a clinical trial at Vanderbilt for the drug Ibrutinib. Billy has chronic lymphocytic leukemia (CLL) with the 17p deletion mentioned below. 

The progress that has been made in putting Billy's CLL on the road to remission has been remarkable. The story how Ibrutinib came into existence is pretty wild. 

Hopefully some day, many chronic lymphocytic leukemia (CLL) and mantle cell lymphoma (MCL) patients. like Mary Jo and Billy, as well as other B-cell malignancies will have access to this remarkable drug. 

 From Dr. Sharman's CLL & Lymphoma Blog

 Where do drugs come from? Sometimes they come from places far removed from where they were originally intended to go. The history of ibrutinib development is detailed in this article published in Forbes magazine. As David aptly points out – these drugs can come out of left field with wild histories. Lots of people played important roles – and I think it is a fantastic read. I would highly encourage any patient with CLL or NHL take the time to read it (yes I am proud to get a couple of personal mentions).

 Ibrutinib is coming soon. The FDA has given signals that it may receive preliminary approval toward the end of this year or early next year. This drug combines impressive clinical efficacy with limited toxicity – a formula that is very exciting for patients with the disease. It may seem like things are moving at a glacial pace (read my post on why it takes so long), but in the perspective of many people close to the action – it is clear that this is getting moved as quickly as things can go.

Unfortunately the initial approval will not serve as broad permission for any oncologist to prescribe it to any patient. It will probably have a narrow, “indication” at first for patients with relapsed Waldenstrom’s Macroglobulinemia and Mantle Cell Lymphoma having received some specific prior therapies. Second – I predict that patients with 17p deleted CLL will get the next, “indication.” Over the next 1-3 years we will see the “indications” slowly expand in different patient populations

 “Indications” matter because insurance companies pay close attention to what the FDA has approved. Different insurance companies take very different attitudes regarding “off label” prescribing of drugs. For a drug likely to cost nearly $90k per year (my guess only) – insurance will likely look quite closely at who is receiving it. While CLL patients will greet the approval – it may still take a while for them to access the medicine. That is why getting involved in research studies is so important!!!!

Read The Wild Story Behind A Promising Experimental Cancer Drug here

Transplant Survival Guide

BMT Survivorship Manual

Your Brain After Chemo

Reclaiming Your Brain

Nine simple steps you can start doing today.

Step 1
Focus every day only on those things you can control
Chronic distress can lead to elevated levels of stress hormones, such as cortisol, that suppress your immune system and, in turn, make you more vulnerable to getting sick. But realistic, doable challenges actually help boost your acute-stress system as you release neurotransmitters into your synapses that activate your brain. It also pumps adrenaline into the bloodstream, which gears you up for the task.

Step 2
Set your biological clock to the right time
Set your body clock by getting up at the same time every day, no matter what time you go to sleep. Also, the simplest thing you can do to set and maintain your brain’s clock to the right time is to give your brain access to the light-dark cycle that nature provides. Go to bed with your curtains open.

Step3
Eat plenty of fruits and vegetables
Colorful fruits and vegetables provide antioxidants that bathe your brain cells and other cells. For every day that you don’t get at least five portions of fruits and vegetables, take a multivitamin.

Step4
Keep in mind the 60/60 rule
Your brain’s neurotransmission and hormonal signals depend on the amino acids in protein, so get at least 60 grams a day if you are an average-size adult—and no more than 60 grams of total fat. All enzymes in the brain that synthesize the neurotransmitters from amino acids are big proteins—so are the channels for the sodium, potassium and calcium ions that keep the electricity flowing through your neuropathways.

Step5
Drink to your health
Milk contains many things you need. Its fluid content helps to maintain the right concentrations of electrolytes, such as sodium and potassium, for the electricity
that flows in your brain. Milk’s calcium is critical for release of the neurotransmitters needed for communication from one neuron in your brain to the next. And the whole protein that milk provides contains all the essential amino acids.Caffeine can provide short-term benefits to increasing speed and accuracy of cognitive processes as well as enhance a sense of well-being. Recent data also point to antioxidant and anti-inflammatory activities of caffeine.

Step6
Get physical
Physical exercise reduces stress and stimulates your neuroendocrine system in a healthy way. Exercise your heart and lungs with aerobic exercise at least three or four times each week. Do fun exercise such as biking, hiking, swimming or gardening.

Step7
Get a mental or social workout
Stay engaged mentally, socially and intellectually. Keep up with current events, but avoid tabloid sources that spoon-feed sensational and distressing (depressing) information.

Step8
Appreciate the big picture
Cognitive therapy is built on the idea that it’s not what you have, who you are or what you are doing that makes you happy or unhappy. It’s what you think about. Logging sincere thoughts of gratitude in a journal has been found to diminish physical symptoms as well as increase mood and optimism.

Step9
Keep healthy
Try to stay away from doctors and hospitals unless you are in treatment, need urgent medical care or want preventive care. Ask yourself if what’s ailing you is something you can control with lifestyle changes instead of going to a doctor or hospital where you may be exposed to other illnesses.

Adapted with permission by Kathy LaTour from Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focusby Dan Silverman, MD, PhD, and Idelle Davidson.

Mary Jo Update #2 - Getting Mary Jo well, an ecumenical project

Hello, everyone. 

We are in a transition period now. It was great to be able to go to the Chrism Mass, and participate in all of the Easter Triduum masses with Father Dale, Deacon Carl and Deacon Nick. Of course, Mary Jo couldn't go. I left immediately after it was over because, like Mary Jo, I must be careful about catching something and bringing it home. 

 Mary Jo has only been to Mass once since November. She went to 7 AM Mass one weekend after the last treatment and she was feeling good. She sat in a pew with no one else around her. After a few minutes, a woman sat down next to her, and immediately pulled out an inhaler and started coughing. That did it. She went back to Mass of the Air which she says Father Scott has been on quite a bit lately. 

Mary Jo is feeling great right now. The lymphoma is in remission and her blood levels are normal. We were able to celebrate Easter with the kids  and grandkids on Easter without either of us catching anything. We will be going back to Vanderbilt soon. They will give Mary Jo shots for 3-4 days to promote the production of blood cells in her bone marrow. Then they will hook her to a machine to remove and collect stem cells from her blood. It is sort of like a dialysis machine.

They need 2 million stem cells for the transplant. They said that normally they can collect that many in 2-3 sessions. The sessions last 7 hours. After they have collected enough stem cells, we will come back home for a week. We will be mostly in isolation that week. We don't want to go back down there with something that might cause them to postpone the transplant date. 

We will go back to Vanderbilt on at the end  of the month and move into an apartment close to the transplant center down there. They will give Mary Jo 5 days of heavy duty chemo on the days leading up to her transplant day. The last chemo treatment two days before her transplant will totally wipe out her bone marrow. An off day will follow, and then she will get her stem cells back on transplant day. It is only a two hour procedure. That will be her new birthday, or re-birthday. When she gets her life back. Hopefully, for a long time. When we were down there a couple of weeks ago, the social worker said that she had met with someone who has the same thing as Mary Jo who has been in remission for nine years. 

Without the transplant, I feel certain that, as we have been told by doctors here and in Nashville, she would back in treatment in less than two years. Even after the six chemo treatments that she had at Baptist East from November to February, low grade lymphoma cells were found in tissue samples from her small intestine that were analyzed after her colonoscopy last month. I was amazed that was possible. Mantle Cell Lymphoma is one of 3 or 4 Non-Hodgkins Lymphomas that they have trouble keeping in remission for very long without a transplant.

Our apartment down there will be near the hospital in case something happens. She is supposed to monitor her temperature closely throughout the days after the transplant. If she should have a temperature above 100°, I am supposed to take her to the emergency room asap.

They will be monitoring her blood levels daily. When her blood levels get back to normal, we can come home. They told us that usually takes around 30 days after the transplant. They also told us that it would take 100 days after the transplant before she would totally feel normal. So, we have a long road ahead of us. Updates will become more frequent while we are in Nashville.

Thanks for all of your thoughts and  prayers. We are truly blessed to have so many family, friends and people that we have never met praying for us. We are on prayer lists at Southeast Christian, Broadway Baptist, Saint Michael's Orthodox, and others. 

Getting Mary Jo well has turned into an ecumenical project.

May the peace of Christ and blessings of the Easter Season be upon us all, 

Gerry

Stem Cell Transplants: Auto vs Allo, Consultation and Information

Many of you will be familiar with the term "Bone Marrow Transplant" and essentially that is the same thing as a Stem Cell Transplant. The difference is the source of the stem cells. 

In a traditional Bone Marrow Transplant, the stem cells are collected by placing the donor under a general anaesthetic, then using a surgical procedure to extract bone marrow directly from the bones. This consists of a number of needle insertions to extract the marrow. The patient feels no pain since they are asleep, but after waking up they will in all likelihood be very sore for a number of days. This method of collecting the stem cells is rarely used anymore unless they cannot collect them from the blood as described below. 

 In a Stem Cell Transplant, the stem cells are collected from the circulating blood. This procedure is called aphaeresis. It is accomplished by inserting an IV into both arms of the donor. Blood is drawn out of an IV in one arm and pumped through a machine which separates out the stem cells, then the remaining blood is pumped back into the donor through an IV in the other arm. In many cases instead of using an IV in both arms they will use a central line similar to a Hickman catheter. 

Under normal circumstances there are usually very few stem cells circulating in the blood, therefore it is necessary to "mobilize" the stem cells out of the marrow and into the blood. This is done by giving the patient chemotherapy. Giving the patient chemotherapy kills many of the normal red and white blood cells. When this happens your bone marrow must go into overdrive to replace them which means the stem cells go to work. Stem cells are the cells which can become any type of blood cell, and which normally reside in the bone marrow. This sudden drop in red and white counts causes many of them to be pushed out into the circulating blood at this time. Then they can be collected by aphaeresis. 

Allogeneic (al-o-gen-ay-ic)

In this transplant someone else is the donor. Most often it will be a sibling who has HLA matched blood. When a sibling match is not available another relative may be a candidate or the bone marrow registry may be searched.  Allogeneic transplants have the highest chance of curing the patient, and in fact even those who have indolent varieties which are generally not curable, may be cured with an allogeneic transplant. Unfortunately along with this excellent chance of cure, also comes a corresponding risk of death. Although the risk of death has been dropping over the past decade it is still quite high and is in the range of 20-35%. The risks can be even higher for patients already in poor health. 

This risk comes primarily from the Graft Versus Host Disease (GVHD). This is caused by the donors immune cells mounting a response against the patient. This is quite opposite to what you may be used to thinking. Most of us are familiar with a typical transplant rejection where the patients body tries to reject the donated organ. However since an SCT involves transplanting a new donor immune system into the patient it is the donated immune system that is trying to reject the patient. This can be fatal if it gets out of hand. There is a great deal of research being done to find better ways to deal with GVHD. Check out the ASH abstracts for lots of medical abstracts about GVHD.

Here is an excellent (though technical) discussion of the state of the art of GVHD from Blood Journal (2009)

Acute graft-versus-host disease: from the bench to the bedside

GVHD is not all bad. In fact GVHD is part of what can cure the patient and a limited amount of it is a good thing for patients undergoing an allogeneic transplant. When the donors immune system mounts its attack on the patient, it also mounts an attack on the patients cancer because this healthy new immune system works properly and recognizes cancer as more foreign than the patient. If controlled properly the new immune system will kill the cancer and not the patient. The good aspect of Graft Versus Host Disease is often called Graft Versus Lymphoma (or Leukaemia ) in recognition of the beneficial effect that it has.

Autologous 

In this transplant the patient donates their own stem cells/marrow. You might think this sounds strange since the patient already has cancer. However there are two characteristics of NHL that are important to understand. First the patient who has NHL has cancer of the white blood cells that circulate in the lymphatic system. Therefore very few if any cancer cells are in the blood. Second, the aphaeresis procedure collects only stem cells not white blood cells. In theory there should not be any risk of collecting any cancer cells, but unfortunately theory and fact don't quite match. 

The fact is that we have not perfected the art of separating the stem cells from the blood during the aphaeresis procedure so some other blood products will be collected. And although NHL does not normally circulate in the blood there are always a few roaming cancer cells in the blood. This means that there is a pretty good risk of getting some cancer cells in the stem cell harvest. Many cancer centres are experimenting with various techniques to eliminate this problem. There are some mechanical filtering systems in use in which the harvest is run through a machine which is able to detect and eliminate the cancer cells. However one of the more promising techniques for "purging" the harvest is to use monoclonal antibodies such as Rituxan to purge the patient before the harvest is collected.

There is no risk of Graft vs Host Disease (GVHD) with this type of transplant since the patient is only getting their own stem cells. For this reason the risk of death is far lower (only 2%-5%).

From Rich Franco over at My Adventures With Mantle Cell Lymphoma Blog.

 Rich is having an Allogeneic Transplant using donor stem cells. Mary Jo is having Autologous Transplant using her own stem cells. There is a good side and bad side to each. The bad side of the Allogeneic Transplant is that it is much riskier because of the possibility of rejection, or the chance the donor's stem cells will attack the patient's body. The good side you are getting stem cells from someone who has not had cancer. The good side of the Autologous Transplant is that there no chance of rejection since they are the patient's own stem cells. The bad side is that even though the stem cells are "cleansed" after being collected from the patient. They are stem cells that allowed the cancer to develop in the first place. Since Mantle Cell Lymphoma is not cureable. The objectives of both transplants are the same - to put the cancer into remission for as long a time as possible.

I had two appointments at Hackensack University Medical Center. My first one was a follow up with Dr. Jenifer L, Marks to see how I am doing from the surgical biopsy. All has healed well. I again want to mention that Dr. Marks was a highly competent doctor with an extremely pleasant and compassionate approach with her patients.

My second appoint of the day was at the John Theurer Cancer Center with Scott D. Rowley M.D. for my transplant consultation. Dr. Rowley is member of the Blood and Marrow Transplantation Program at the Cancer Center. The consultation lasted 3 hours. I must say that all the information we received was a bit overwhelming. My wife and I received a very detailed education on the process. On top of our discussion we were given a book to read titled: Bone Marrow and Blood Stem Cell Transplants: A Guide for Patients and Their Loved Ones by Susan K. Stewart. The book covers transplants from soup to nuts. It spans from the planning process and finding a donor through living life after your transplant.

For me, the first step will be for my Transplant Case Worker and Transplant Insurance Coordinator (which are provided by the Cancer Center) to get the ball rolling by contacting my insurance and getting the authorization to start the process.

Once this is done I will be asked to provide the contact information for my siblings. What this means is that I will be getting an Allogeneic Transplant. With this the stem cells or bone marrow will come from a donor. The reason I am not getting an Autologous Transplant (which would be transplanting my own bone marrow) is that we basically have two goals with the transplant. 1. Eliminate Mantle Cell Lymphoma from my system. 2. Provide me with a new, uncompromised immune system. By getting someone else’s healthy bone marrow, it will see any remnants of my MCL as foreign cells and attack and kill them.

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GREATNESS

"You're Not Alone": Inspiring story from soldier diagnosed while on Afghanistan deployment

I figured since I'm still early into my illness, that I share my story to whoever will listen.

 I have a huge support base back home with friends and family, and an even bigger one with my wife and 2 year old son. My name is S***, I'm 22 years old, and I was on my second deployment with the Army in Afghanistan when I began to experience the symptoms of the disease. I deployed this past January and I was only 2 months into the deployment when I was flown to several other FOBs all over East Patika until they flew me to Germany where I was finally diagnosed.

 Honestly, I didn't know how to soak it all in, as I'm sure those of you who have received their version of the news have experienced it in this same manner; it completely sinks to the back of your mind as if they didn't tell you anything dire at all. I denied the fact that me being in the best shape of my life, had aspirations for my military career upon return from my deployment, had all been warped by this cancer. And then, that's when I began to realize, my life had been completely changed. That's when I lost it. I didn't plan for something like this and I felt so forsaken. Why me, you know? So many other people who do harm in this world, and me, a husband, father, soldier, I was the one was selected by nature to become apart of this disease.

 When I arrived stateside, I barely remember being alive. I was in ICU nd apparently I was extremely aggressive to everyone (which I have absolutely no recollection of and I'm not an aggressive guy) and was very hostile. They dove into my first chemo cycle when they finally staged it, which my body reacted well to it. No nausea or vomiting, which I didn't know is as common as it is, because everyone was surprised I didn't experience this. Then, the hospital stay which lasted for a month. It was a prison for my mind and I felt like I was again succumbing to the reality of the disease. I couldn't detach myself from it.


 But my wife, she's the one who has stuck with me through this and continues to do so. She helps me shoulder the weight of all this and I'll be frank, if I didn't have her, I would have a lot less heart in dealing with this. But now, after my second round of chemo and now an outpatient, I have hope. And one thing I forgot to mention, is that I've never been a religious person. I never had regards for there being a God, but before I deployed, me and my wife were trying for a second child for 10 months. We had almost given up hope because it was so down to the wire before me leaving. But then, a pregnancy test, a blood test, and lo and behold, we were pregnant, all before my body began to turn. And as you know, chemo has its lifelong effects, including infertility. Call it divine intervention, I don't know, but if the cancer had shown up any earlier, we never would know the joy of having a daughter due in August.

 I'm curious to see how life pans out by the end of the year, but also very hopeful. If there's anyone, who like me, has recently become diagnosed, I hope my story has given you hope. You're not alone. It took me until now to realize that. As cliche as it sounds, there's always light at the end of the tunnel. Don't allow the weight of this to alter you, because each day that passes, is another day you've been rid of this illness. You can get through this, as we all are.

 Thank you. S***.

 From NHL discussion group. Name withheld. S*** diagnosed with Sporadic Burkitt's Lymphoma (non-Hodgkin's) with Tumor Lysis Syndrome.

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