[Jeffrey T Clark]

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

[Jeffrey T Clark]

I was diagnosed with MDS Unclassified w/o anemia and #7 deletion when I was 42. That was in 2007. It wasn’t until 2013 did I attempt chemo. Because my blood counts were all severally low the chemo dumped them even further creating long hospital stays and severe infections. After every chemo session completed I was in the hospital 2 to 3 weeks. I quit and my counts are back to just being low. But no more hospital stays or blood transfusions. Hospice was assigned to me as they didnt think I would make it and its been 2 years.
They do a really good job taking care of my pain which is stress and weather induced. So the Why Chemo question answer from me was no more chemo.
Big Hugs

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