Hello My New Friends!
Greetings! I'm new to the forum and as of December 2016, I am also a relatively newly diagnosed MDS patient.
I've spent a lot of time researching and trying to better understand my disease. My browser seems to automatically goes to sites like aamds.org, mds-foundation.org and others. I do try to keep a healthy balance, however, between learning and overreacting to the information I read.
To quickly give you my background, I've been struggling with moderately low blood counts since my PCP ordered a routine CBC in 2013. At that time, I as referred to a hematologist, but the BMB was inconclusive. Watch and Wait suddenly became my course of (in)action until December of last year.
My "numbers" from my first abnormal CBC w/Diff in 2013 only showed WBC of 2.0 X10*3/uL and PLT of 94 X 10*3/uL.
Since 2013, I visited my hematologists 4 times per year and tracked my continuously decreasing numbers :(
Fast forward to November of 2016. My hematologist noticed I had become severely neutropenic and wrote me a prescription for a steroid to improve my neutropenia. At this point, I'm still not diagnosed. Rather than take the steroids, I chose to visit Moffitt Cancer Center in Tampa for a second opinion and hopefully a diagnosis. Fortunately, I was able to quickly score an appointment and visited them on November 30.
The results: After another BMB and a series of blood testing including flow cytometry, I was diagnosed with MDS, subtype RAEB-I (blasts >5%, good karyotype). By now, most of my CBC values have fallen outside the normal range. WBC was .74, PLT was 58, ANC 240, RBC 3.51 X10*6/uL, HGB 12.3 g/dL. MCV, MCH, MPV, HCT are also out of the normal range.
My doctor at Moffitt decided to admit me into the hospital and begin a course of treatment normally used for Aplastic Anemia patients - Equine Atgam followed by 6 months of cyclosporine. The Atgam treatment wasn't fun and I had the fever and chills many patients experience while undergoing this biotherapy. But, almost as quickly as it started it was over and I was allowed to walk out of the hospital and resume my life. The goal was to suppress my immune system and give my body a chance to reset my marrow and start making healthy blood cells again.
Lets fast forward again 2 1/2 months post treatment (today). My numbers aren't much better and my doctor has termed them "stably bad". We are still watching and waiting although he admitted today that it doesn't appear the Atgam treatment is working. I will return to MOffitt and see him in early May and he'll do another BMB. At the same time, my sister is being sent her HLA Typing kit in preparation for the eventuality of a SCT. The results of the BMB in May may hopefully determine if/when that SCT will be approved and scheduled.
So, I'm trying to return to "normal" but it is admittedly difficult. I exercise regularly but not like I once did before my Atgam treatment. Now, I'm doing more active stretching and weight training whereas before I was training to run half marathons and participate in triathlons. Unfortunately, I am not able to run anymore as I can't catch my breath. I'm not constantly fatigued, but have some difficultly with getting enough O2 to my body during exercise. So, I just take it slower than before...
I'm try to keep busy with work and hobbies to occupy my mind, but I find myself thinking again and again about the uncertainty of the future. As many of you know, it isn't easy to cope but I've found journaling and sharing with others helps me to better come to grips with the disease and its impact on me.
Anyway, this was probably far to long of a introduction but I'm glad to have found this forum and look forward to interacting with you as I beat back my MDS!
CBC as of 3/16: WBC .41, PLT 60, ANC 160, RBC 3.11, HGB 11.2. All other parameters are slightly out of normal range except RDW and MCHC.
You write very well, and have obviously learned a lot about MDS.
I'm surprised that you were treated for so long without a specific diagnosis. I'm glad Moffatt could give you the facts, bad as an MDS diagnosis is.
It's very good news that your bone marrow biopsy report showed a good karyotype. Does your IPSS score put you in the Intermediate-1 risk category? If so, then that's probably why they didn't recommend Vidaza treatment, which is the standard for higher-risk MDS.
It's too bad that ATG gave you only 2-1/2 months of a response, although they may want to give it more time to draw a definite conclusion about how much it helped.
Exercising at the level that you can handle is very sensible. When you have low counts, overtaxing your body is not good for you, but neither is sitting on the sofa.
I know what you mean about uncertainty. It's the rare patient who doesn't spend time worrying about the future course of their MDS. My wife and I battled that by learning as much as we could and partnering with her hematologist, so we could have some control.
When do you expect to know if your sister is a match? Have they searched the bone marrow registry for matches as well? Nobody wants to go to transplant, but it would be a comfort to know that the choice is available.
Brian welcome, your history is interesting and fairly typical of what many of us have experienced. Neil offered very good advice. I felt great going into my diagnosis. I was introduced to MDS following a routine CBC when experiencing a kidney stone attack. I had been hardly ill during my entire life so the kidney stone attack was a surprise followed by a greater surprise. I had two BMBs within a couple of weeks and was diagnosed with RAEB-2 and blasts at 19 percent and three genetic mutations. Immediately the doctors started me with Vidaza (azacytidine) in preparation for a stem cell transplant which occurred eight months later. My donor was a 20 year-old male from Germany. My situation was kind of unique in that I felt fine the entire time leading up to the SCT and golfing weekly and walking the six-mile hilly course without any problems. It is always my recommendation that if a stem cell transplant is in the future, it is important to have it when in as good of health as possible. In other words don't wait too long. We wish you the best in this experience.
Neil and bailie: Thanks for the welcome! I know I'm not alone in this, but your confirmation that my journey is similar to your own is very comforting.
Neil - you asked about my risk category at diagnosis. It was Intermediate-I. The initial treatment of Atgam was to hopefully bring up my ANC. The Bone Marrow Transplant team and my doctor at Moffitt are now looking to see if the Atgam treatment is successful (which we won't really know for a few more months). If successful that would postpone the need for and SCT for a while. If it is not successful (as it appears to be trending) or my blast count increases then I would be placed on Vidaza and initiate the steps for the transplant.
Also, they've only shipped the HLA Typing kit to my sister this week. After getting her doctor to draw her blood and send it back to Moffitt, I expect we should know if she is a match by sometime early/mid-April (allowing for transit time, delays and other snafu's that may happen). If she is not a match, they will search the registry only after they officially start the SCT process.
One thing I'm encouraged by both of your responses is my sticking to my exercise routine. Of course today is my rest day and I won't be heading to the gym but will return with a vengeance tomorrow!
Bailie, I hope you are well on your way to recovery and the same goes for your wife, Neil. Thank you both!
Brian, another thing to keep in mind is how all of our situations are different. I applaud you for being on top of your situation. Knowledge is so important for this. For me, my numbers were deteriorating rapidly. I have always appreciated the rapid response of my doctors. Yet there are some forms of MDS that people can live with for years.
I also have MDS RAEB1, good Karyotype. My numbers for last month was WBC 1.3, RBC 2, Plts 29, ANC 280.
My doctor has suggested a SCT this April/May. My brother is a perfect match, I sent him the swab kit (saliva test), it's much more convenient than drawing blood.
I salute your daily workout ! I don't exercise much, because all the strength I have is channeled into commuting to and from work, that's enough exercise for me.
I am also taking steroids, anti-fungal (yuck) and anti-biotics. No vidaza for me.
Hope your sister is a match. Even if you don't go for a SCT just yet, it's nice to know there is a match in the wings.
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