A New Chapter: MDS

This has probably been one of the more difficult posts I've had to write.  Difficult for many reasons, but mostly because of the dissapointment and a little heartbreak that it's caused some people.  Even though, as I explain as best as I can, it shouldn't.  So, I will try my best (try to stay patient with me) as I struggle through this post.

After you are in the cancer world for a while, there isn't much that shocks you anymore.  Some people may say you're jaded or tainted, but I think as time moves on we have a better comprehension of the medical world.  We understand that there are always options, there are second and third opinions to search for, nothing is cut and dry, nothing is black and white, we live in a gray gray world.  So when something we weren't prepared for comes our way, at least for me, it takes a bit to digest but then as information is collected, we soon form plans and we move.  We move slowly, as one of my favorite caretakers in the HL world has told me.  We move slowly. And we do, even with this piece of information.

After seven years of chemotherapy your body can take quite a beating. There are several things that can happen to an individual with that amount of chemotherapy.  You can develop secondary cancers depending on your previous treatments.  Your lungs can start struggling, your heart may not be as strong, your bones can begin to deteriorate.  It's a scary secondary diagnosis world out there -- even for someone as young as I am.  Luckily, none of these diagnoses have happened at this time.

However, there is something that has occurred.  Right after Florida, I received a bone marrow biopsy from O and my medical team.   Previously, on the Revlimid my Hemoglobin (red blood cell production) was taking a nose dive, and then performing at normal levels.  Something was off.  Which is why we went forward with the bone marrow biopsy.  The biopsy revealed abnormalities. Some of them which could have been caused by the Revlimid, but one that indicated I have early stages of Myelodysplastic Syndromes also known as MDS.  In many ways it is considered a disorder that if not treated could lead to leukemia, if you have an aggressive stage.  Luckily, I am at an extremely early and low-risk stage of MDS.

After seven years of chemotherapy, my bone marrow has taken a bit of a beating, and it is showing dsyplastic abnormalities.  Which is why this is considered Secondary MDS, because it is caused by the amount of chemotherapy I've had over the years.  Robin Roberts, if you've followed her also had MDS due to her previous chemotherapy; however, I believe hers was more aggressive.

MDS for those who aren't in the medical field is when your stem cells (which produce your white/red blood cells and platelets) aren't able to fully produce to its evolved level.  Which means you may not have enough red blood cells working in your body, which has been my case in the past.  Right now, fortunately, all of my counts are normal since discontinuing Revlimid.  However, I have a very rare form of MDS called Refractory Anemia with Ringed Sideroblasts (RARS).  This means that I have less than 5% of potential leukemia blasts (precancerous cells) in my bone marrow (I have zero), and more than 15% of ringed sideroblasts (I have 18%). Luckily, sideroblasts are do not turn into anything.  They are just abnormal cells that do not fully produce into your red or white blood cells (that need to, which is why I'm lacking them), but they are not negative or positive.  They are just the percentage that should be evolving into healthy cells that aren't.  So, 18 percent of my stem cells aren't using their full potential at the moment.  

Within the last few weeks, we have met with Columbia's MDS specialist and discussed a lot of overwhelming information which I will do my best to explain and discuss with all of you over time.  For now though this is not a crisis or alarming diagnosis, please know that.  I am in a very, very early stage and very, very low risk.  MDS low and high risk is determined by three factors: How your blood counts are doing (off treatment), Chromosome damage, and how many "Blasts" you have in your bone marrow. Right now, I have none of these factors which makes me low-risk MDS.  Dr. Raza, the MDS specialist, stated that if I was a normal MDS patient and was not looking at anymore chemo, that we would not do anything at the moment.  We would just watch and wait, for years probably.  MDS at this stage is looked at as pre-cancerous cells, and for some they never form, at all. For others, they do.  If they do, an allo-transplant is the cure. 

Ironic huh? The one treatment I have been avoiding for my Hodgkin's Lymphoma for years would potentially cure the HL and the MDS.  Life certainly knows how to make us laugh sometimes. 

Since I am NOT a normal patient, this is what this diagnosis means for me at the moment:

Short Term: 

• My Red Blood Cells will probably give me trouble during treatment, this will mean I need transfusions (hopefully not too often), but I need to be prepared.
• We will also attempt Red Blood Cell Booster Shots to help my Red Blood Cells
• We have to avoid "hard chemotherapy" (Bendamustine, ICE, GND, ect.) Any form of therapy that is not targeted and is a 'stem cell chemo killer,' we can no longer utilize as treatment.
• Having MDS makes me ineligible for some clinical trials, and crosses other hard chemotherapies off of our list.  The result: we will not have as many options as we once had before this diagnosis and have to be more careful
• We will continue on with the treatments we do have, just as we have been to treat the HL.  At the moment we will revisit SAHA at a baby dose. SAHA is also a management treatment for MDS.
• We are researching for future allo-transplant treatments, now. We are so grateful for all the donations that we've recently received thus far.  If you would like to help us travel to Seattle and other cancer facilities for us to continue our research and where a potential future transplant could take place. Please read this post: click here. Or look to your right and click on the "Donate" button under "Donation to Treatment Travel." 

Long Term: 

• We are hoping we will be able to continue with non-stemcell chemo killer treatments for as long as we can.  This could be a year, two years, or more. 
• We will be balancing killing the Lymphoma with being gentle with my blood cells. The tricky part will be to treat the HL but not let my red blood cells go too low. This might be easy or difficult, we won't know until we start this first treatment.
• An Allo-transplant has always been in the far off distance for me as the ultimate last option for my Lymphoma.  I have wanted to exhaust ALL options for my HL before jumping into that boat.  An Allo (donor cell transplant) at this time will now be on the radar.  We will be doing our research this summer and preparing as much as we can with information, cancer facilities, medical teams, and clinical trials.  We want to be prepared, informed, and educated.  
• The Allo can potentially treat and cure both my HL and MDS.  It would give me new bone marrow (a new healthy immune system), and rid this body of disease.  However, it is a risky procedure that has concerning mortality rate, and I've watched many other friends still relapse after this long, grueling, procedure that is months to years of recovery. 
• There will come a point when my cells can no longer handle chemotherapy, a point when my red cells may not recover during treatment.  We do not have a clear idea when this day will come, but when it does this will signal that we have to being prepping for the allo-transplant. Hopefully it is not for a few more years, but we will be ready no matter when it comes. 

So, my friends.  I realize that this is an overwhelming amount of information for all of you to read.  As stated before, it has been difficult to write as I do not want to alarm anyone.  For now, we continue just as we did before the diagnosis.  Ultimately, the diagnosis does not change our path or course of treatment it just gives us some limitations and pieces of information to help us as we move forward.

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Lots of people at this point in time when there are bumps in the road or a new challenge ask me: What can I do? And this time -- I have an answer.  Think about being a stem cell/bone marrow donor.  Being a donor is not an invasive process at all. When you donate, it is literally just like taking blood.  There is no surgery, no one digs into your bones, no one punctures your bone to get into your bone marrow.  It is nothing like that at all.  You literally, will be giving blood -- and a machine will separate your stem cells from your blood. That is it! So, think about this. It could potentially save my life, or someone else's.

Register online here:

http://marrow.org/Home.aspx

Easy as one, two three.  If you read this blog, and are healthy. I ask you to please, consider registering.  When/if you do, I'd love to hear about it in the comments section.  Let's start a small, "B movement." for donors if we can.

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Tomorrow I meet with O'connor and team to begin to discuss new treatment protocol of SAHA.  Our hope is little to no side effects, strong red blood cells, and an April filled with beautiful sunshine.  And we will move slowly, never hurry, and continue on.


Today I'm going to leave you all with a small grateful list. I write one everyday.
1. Sunshine
2. Tylenol and pain medication
3. New Smoothie Recipes
4. My Cousins, I love my cousins
5. Poetry, more specifically today, Charles Bukowski.

Sending so much love to you and yours,
B.