[Donna]

Hi Sharon,
I guess doctors treat differently probably dependent upon all other lab numbers and result of bone marrow biopsy. That being said, I have not had any treatment, just frequent labs for several years. My platelets are around 67,000 now and my doctor said I will need to start chemo when they get to 50,000. I have heard other doctors say they can do procedures, etc. until 50,000 without problems. So I feel like 50,000 is the magic number. I’m not sure if this is helpful or not. Donna

[Donna]

Lillian…..I am happy for you that you made the decision and you seem comfortable with it. When they tell you things could go wrong, could one actually have less than 2 years with the transplant. How long do they feel the life span is with a mini transplant when everything goes well. It sounds like you made a good decision but I can understand why you would feel nervous. Do you have good support at home? YOu know you have long distance support here on this message board. Donna

[Donna]

Lillian…….How did your appointment go? Are you going with the mini-transplant? Donna

[Donna]

Gerry……….I agree with you that is seems questionable, but maybe your doctor is basing it on other findings, like your blood counts and/or if you have any mutations. I am told I have “pre MDS” and that the BMB did not confirm MDS but it did find four mutations which suggest are at work for developing MDS or a blood cancer like leukemia. I am also told that when/if my platelets go down to 50,000 I will need to start chemo. My question is, can you go right to leukemia without full MDS? I am at a center for excellence and I have trust in my doctor. I just have several questions. They have been following my blood for years. Donna

[Donna]

Thomas…….I hope you saw on this site that a patient/caretakers forum is scheduled July 21 in Boston. YOu can sign up on this site if you are interested. The agenda is listed and it looks like lots of time for questions/answers. I just wanted to make sure you knew about it. Donna

[Donna]

Lyssa………..I saw an article where “pre-MDS” was mentioned. It said they differentiate between..1) No, you don’t have MDS and your blood counts are normal for you; 2) Pre-MDS where it is evolving into a clonal hemoatopietic disorder such as MDS or a blood cancer like leukemia; or 3) full MDS. So, I take from this that I am heading toward something but they are not sure what…probably MDS. My doctor called it MDS until my bone marrow biopsy…now it is called pre-MDS. I hope the “pre” stays for a long time. Donna

[Donna]

Lillian……I am feeling fine. I don’t go back for my blood work until June 28th, so I’ll find out how they think I am doing. I guess more depends on the numbers than how I feel. So you have decided to go with the transplant. Please let me know what you find out about the particulars of the mini transplant. I hope your appointment goes well and you feel confident in your decision. How do you feel? I mean, do you have many symptoms from the MDS or is it about your numbers? Maybe the ankle swelling is something all together different. Did you twist it or anyting? Are joint problems associated with MDS? I signed up for a forum in Boston in July and they are going to talk some about transplants. It looks like a lot of question and answer time, so that will be good. Donna

[Donna]

Lillian……How are you doing? Your date with the transplant folks is coming up soon. In case I don’t get on this message board before Tuesday, I want to wish you well. Please keep us informed of your decision. Donna

[Donna]

Michael and Alan………..Thanks for the response and the kind words. I know I am lucky to not need treatment. It’s just that there has been talk of treatment for over a year now and then, I don’t need it. Maybe if it wasn’t mentioned every visit, I would just assume that this could be a long way down the road. However, from the first time I had the genetic testing, etc., I was told I would need chemo. Then after the BMB didn’t show it, I am told most likely by the end of this year I will need chemo. My counts started going down in 2003 and I was referred to hematologist/oncologist around 2013, so it has all been gradual. I have lots of questions next visit. I signed up for one of the forums in July in Boston, so that should be interesting. There is also the first ever Walk for MDS being held in Boston July 20. It is 5 miles and I know I can’t walk that far, but I hope they get a good turnout just to bring awareness of MDS. I wish you both well. Donna

[Donna]

Cecile……….beautiful post!!

[Donna]

Hi……..I am so confused when I read everyone’s story because my BMB didn’t show “full MDS”, so I am called “pre-MDS”. It is a strange category. My blood counts are a lot lower than some that I see in this message board and there is talk of me starting probably Dacagen by the end of this year, when he expects my platelets will be at 50,000. I don’t understand if my treatment is the same, why the BMB did not show “full MDS” based on the 2016 WHO criteria. Blasts are 4%, WBC goes between 1.4 and 2.6, platelets 67,000, RBC 3.48, hemoglobin 10.9, ANC 1.31. I’m not sure what else is supposed to be there. I have mutations in SRFS2, ASXL1, RUNX1 and TET2. Anyone else have a picture similar to this. I like that I have not needed treatment, but I feel like there is this dark cloud following me. Understand what I mean??

[Donna]

Sharon…..Keep us informed and I hope you have good results from your bone marrow biopsy. My bone marrow biopsy didn’t show “full MDS” but they check my blood every three months and say that I will start chemo when my platelets reach 50,000. They have been dropping for a few years and now are about 67,000. Good luck next week. Donna

[Donna]

Michael…………..My mutations are ASXL1, SRFS2, RUNX1 and TET2. When I look them up, I don’t think they are very good. Donna

[Donna]

Wow, Ray….5 trials. Does your doctor recommend the trials? Donna

[Donna]

Lillian…..What is the 3 times series? You will be going to see about the transplant on my birthday. I will be 73. I told you my MD said I might be a candidate for mini-cell transplant also. As I think about it, it may sound depressing, but if I look at the whole picture, I don’t think I would want to go through it just to get a few years older. There’s a lot to consider. I guess it depends on your health in general and if you have family to care for you. My husband is 78 and my sisters and parents passed away years ago. I guess it is a decision to make when it is right in front of you, so I wish you well on your decision. I would think you could gather all the information on May 22 and then go home and think about it for a few days before giving your answer. Donna

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