51 yr old with MDS w/ excessive blast

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• January 18, 2016 at 11:11 pm #28986
  Linda Klemensits

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  My Husband is 52 yrs old.. he was diagnose with MDS with excessive blast (on accident believe it or not) and were waiting for a donor for his BMT. He is going in with this disease on a positive note (if thats possible) his blast are low 10-12 %, his blood is still stable he has no underlying health issues and tested negative for the aggression gene. My question is all the information that the Oncologist and classes and online information that were getting to read seems to be the disease for someone between the age of 60-70 and other things that he doesnt have and not at all what my husband is experiencing and his situation. I would love to discuss with someone who is in his catogory on what to expect after his transplant and anything else that would help.. A scared and overwhelmed Wife

  January 19, 2016 at 1:11 am #28987
  Jeffrey T Clark

  Participant

  Hi Linda,
  My name is Jeff and I was diagnosed in 2007 with MDS Unclassified w/o Anemia and Deletion#7 Chromosome with a Intermediate 2 ISPP Score. I was 42 at that time. It was horrible to experience this diagnoses as everything showed I was only expected to live 6 to 15 months. Due to my counts all being low and my blasts being less than 2% I refused chemo. There was a couple years that I got so sick and weak that I thought my days were over. But I kept positive and just lived each day as if it were my last and didn’t think about it. Then in 2013 I started to get sick again so I tried the chemo but it only made things worse for me since I already had low counts, it made my counts critically low to the point I had to get whole blood transfusions, plt transfusions and White blood enhancer shots to promote WBC counts. At which time I was stuck in a hospital for several weeks. This went on for several months till I decided quality of life meant more than quanity. With that said since I experienced the chemo and the work that it does I believe it will help your husband as it will knock out the excessive blasts and possibly keep him from transformation to AML. As for the BMT I to am on the BMT transplant list and thankfully they have yet to find a match. I did tell my team at Cleveland Clinic I am not sure I want a transplant due to all the possible side effects. This will be something you and your husband will have to set down and discuss. For some there is no other choice.
  I don’t want to sound bold or try to scare you but to dance around this topic is foolish in my opinion. So when I speak with people I mention the worse case and if it doesn’t happen then you will be happy. I’m not certain that once your husband does the chemo and gets the blast under control that he shouldn’t just give his body a chance to recover on its own. But again that is my opinion. All I can speak on for sure is my own case which account for less than 2% of all MDS cases reported. As you said moist diagnosed with this horrible sickness are in their late 60’s early 70’s. A small percentage are in our age group. So they really don’t have much research to go on. My Hospice team takes care of the pain I endure and each time I go in they comment on how surprised they are on my ability to survive. As my case is very rare and even more rare that I survived over 2 yrs. So although your husband has excessive blasts don’t let the statistics scare you. I am proof that one can live far longer than statistics suggest.
  I truly believe the chemo will do a miracle for your husband and if it was me I would do the chemo just long enough to get the blast under control then I would give my body a chance to recover before I went foreword with the transplant. I try to avoid sick people bad food and I don’t drink smoke or do illegal drugs of any type. I do have horrible days with pain but it is just part of my life that I have came to except. Many people with MDS never experience any pain.
  Don’t be afraid just stay positive and live as if it was the last day and enjoy life. You will be surprised how much staying positive will help. I am going in again to get another bone marrow biopsy Thursday because of some strange things going on. I must admit this is the first time I am not sure I even want to here what is going on.
  As for not having any of the other signs many have I was the same for the first 4 yrs with the exception of low wbc and plt counts. I had some strange pain but didn’t think much of it since I wasn’t in my 20’s any more. But it just got progressively worse. If your husband goes down the road I have the only thing in his life he will have to deal with is pain and some days being so weak he wont be able to walk with out assistance. But he will manage and life will go on. Just stay positive. I don’t mean to sound so harsh but I no of no other way to put it. I hope this is helpful not hurtful. Big hugs to you and your husband.
  If your husband becomes short with you understand being told you have such a sickness is very scary and difficult to except but in time he will over come and learn how to deal with it in his way. For me I didn’t want people to treat me different and walk on egg shells when around me. I wanted them to just treat me the same because it was my blood and bones with problem not my mind and feelings.
  I am on Facebook JeffClark4life or Jeff T Clark. my email is jtclark218@gmail.com and my number is 419-552-1043 if you or your husband ever want to chat or just someone to scream at I am here and understand. And even it is just to text call or message to scream I encourage it and wont take it personal because I understand I’ve been there and wish I had someone that understood.
  Stay positive Good Night
  Jeff

  January 21, 2016 at 3:11 pm #29061
  LeAnn Duke

  Participant

  Hi Linda,
  I am sorry that you all have to go through this, MDS has brought me to think in a very different way. My name is LeAnn and I have MDS RARS (refractory anemia with ringed sideroblasts). I am 58 which my dr said as well that I am young for MDS. My blasts are still below 5% so I don’t have the issue of “cancer” yet. I am considered low risk and am only tranfusion dependent at this time. I have tried the drug Erythropoietin (Aranesp) injections for three months and the injections did not work to help stimulate my bone marrow to produce more healthy red blood cells so we are doing the transfusions (2 units) monthly. I am still relatively new to this only having been diagnosed in June of 2015.

  I certainly agree with Jeff that positive thinking is helpful, but it isn’t always the easiest thing to do when you don’t feel good. I have the general fatigue that goes along with anemia, and when my hemoglobin begins to drop (it never gets much higher tha 10.4 after a transfusion) the other symptoms are blood pounding in my ears and head and heart palpitations. There is also a general malaise that is hard to describe and much of the time an overall nausea and slight dizziness or lightheaded feeling. I can usually go for about 4 full weeks before going in for blood. But I also agree with Jeff that it is best to live one day at a time and enjoy today. We aren’t promised tomorrow anyway, so that is how I have tried to live anyway! I have learned to take it easy when I need to and rest when I need to. I am usualy in the middle of things so this has been a difficult thing for me to do. I am a homemaker so I haven’t had to adjust any kind of work schedule. I know this is hard for a man especially to have to deal with.

  With RARS I have no pain and I consider this a blessing. I don’t know the timeline of progression for this disease but know if I live long enough there will be progression and a future stem cell transplant. I will deal with that when the time comes.

  I hope just knowing there are others out there relatively the same age with this same disease will help you all in dealing with this burden. I, like Jeff, want people to treat me the same way and not treat me like an invalid. There are some times when I can’t do certain things but others when I am able that I don’t want someone to stop me from doing what I am able to do. I hope that makes sense! I have been very fortunate to have people in our church who know there isn’t much they can do except to offer to donate blood to me. This gives them a way of feeling like they are helping me and there are several who have my blood type and several who are universal donors. So we are working with the local blood bank for them to come in and donate specifically to me. This encourages me too to remain positive about this disease!

  January 22, 2016 at 9:53 pm #29132
  kate welch

  Participant

  Linda, My name is Kate. I also have MDS with excessive blast (also discovered by accident), presently at 11%. I was diagnosed August 13, 2014. It’s funny how one remembers the date.. I consider myself fairly lucky, no meds, chemo or transfusions. Like your husband I am healthy except for this MDS….I am in the wait and watch stage, as most of my numbers are close to normal, except for my WBCs / absolute neutrophils. However, in the last couple months my WBC/ANC have been getting extremely low. I have been typed for a BMT, as they thought I would have to have the BMT within that first year… but my blast have stayed between 10-11%, my doctor is amazed. I just hope she stays amazed. I see a doctor in Toledo and one at the James Cancer Center in Columbus. It is at the James that the majority of testing is done.
  I’m sure that when I get my next biopsy (in March) transplant will come up … It is a frightening thought. I’m not sure how I will proceed. I know that they are coming up with new treatments and I hope that they find one before I have to make that BMT decision. So, I can understand your fear as I am also scared … but like Jeff I stay positive. May we all be Blessed… Kate

  January 27, 2016 at 1:19 pm #29141
  Linda Klemensits

  Participant

  Hi Jeff, Thank you very much for your reply. Im taking baby steps and doing alot of listening.

  January 27, 2016 at 1:20 pm #29142
  Linda Klemensits

  Participant

  Thank You Leeann

  January 27, 2016 at 1:21 pm #29143
  Linda Klemensits

  Participant

  Thank you Kate for the reply..

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