[Donna]

Lillian………Wow…good news that your WBC jumped up. Will they be doing another bone marrow biopsy to check the blasts, or can they tell by blood work? It is very encouraging to hear how well you are doing on the Decogen. Do you have to travel very far for the 5 days of infusions? Donna

[Donna]

Hi Lyssa………You are the first person I have heard of that even heard the term pre-MDS. I can’t find it anywhere when I look on line. I have a lot of questions next time I see my doctor. My WBC runs between 1.4 and 2.6; platelets about 67,000; RBC go just a little low and hemoglobin about 10. They have been watching me for years. I do seem to have way less energy then previously. Sometimes I get bruises and I know not to take any Advil when that happens. I also have osteoporosis, just diagnosed and they are talking about Fosamax infusion, but that endocrinologist wants to talk with my hemo/oncologist before any treatment. The Advil really helps with the back ache. Does your husband work full time? Let’s hope that your husband has a long time with the watch period (although it is still difficult not knowing when it will all change). I do not have the true anemia, so I guess I am lucky, but it is my platelets that have gone consistently down for a few years. In 2014 they were 181,000 and then they just went gradually down….170,000, 151,000……down to now at 67,000. I have 4 mutations that seem to be of some importance (I don’t think they are good). Well, I hope you both stay well for a long time to come. Donna

[Donna]

Michael……….What are your mutations? Donna

[Donna]

Lillian…………I am in firm agreement with you. I get conscious sedation, so I am awake and talking to them throughout the procedure and I feel a little pressure, but it is no painful. I wouldn’t do it without sedation. My first doctor thought it was okay to do with Ativan and local anesthesia. No. Not me. I went to another facility. I also would not have family member to donate. I may not even be a candidate. I guess we’ll talk about that down the road. This watch and wait is difficult. Keep us updated! Donna

[Donna]

Lillian…..I am happy for you. I think it is very good that your blasts have gone down to 5%. Mine are only 4% anyway without treatment. Can you not have the chemo because your WBC is too low? Does this chemo seem like something I could drive myself about 50 minutes to and from or do you need someone to take you? Do you have relatives willing to donate for a transplant, if you decide to go that direction? I would consider that good news for you. I seem to think that the mutations are the important thing with me and the WBC and platelets. Do you have mutations? Mine are ASXL1, RUNX1, SRSF2 and TET2. I’m sorry to ask so many questions, but do you get any sedation when you get the BMB? Donna

[Donna]

Lillian…..How do you feel when you get the Dacogen? Nausea, fatigue, weakness?? Donna

[Donna]

Lillian…..My doctor told me that Dacogen could work for one year or ten years, that they really don’t know. He also said that it doesn’t work for everyone, but he thinks it will be good for me. I was the one that asked about a transplant and was told I am too old for the big one but that I might be a candidate for the mini. Maybe we will talk about it down the road. I am not even treating yet. I am about to be 73 next month. Donna

[Donna]

You can also get a lot of information on LLS.org (Leukemia and Lymphoma Society). Click on patients and caregivers on the top right. Then you will see a list and you will see MDS. They, like this organization, can send you material to read. Donna

[Donna]

Lillian……Dacogen is what my doctor said would probably be my treatment….infusion 5 days in a row every month. Right? He said that he has to tell me that it doesn’t work for all people, but if it works, I would get it the rest of my life. I asked how long it usually works and he said, “could be one year, could be ten years. We really don’t know”. That was his answer, although ten years sounds like a stretch. Have you gone for another opinion as to the treatment plan? Are you at a “Center for Excellence” or a very reputable place? Maybe you will be able to make a decision after you meet with the transplant people on 5/22. I hope so. I worry ahead of time. I have only been watch and wait. He said when my platelets get to 50,000 I will need treatment. I am a nurse but I am learning so much that I knew nothing about. Good luck. Keep communicating with us so we know how you are doing. Donna

[Donna]

Hi Chris……….I started with one MD at a Center for Excellence and then went to another Center for Excellence for a 2nd opinion. I’m lucky that there are two hospitals considered Centers for Excellence within an hour from home. I had the expensive genetic blood testing that my insurance did not cover but the hospital did cover it. I did not have to pay for it. It showed 4 mutations that I believe are markers of importance for MDS. I am considered pre-MDS because my bone marrow biopsy said I do not have full MDS but that it is evolving into MDS or another type of blood cancer. My doctor said I will start treatment with probably Dacogen when my platelets go down to 50,000. They were 67,000 last check. These mutations are ones we pick up during our lifetime…..not like family genetics. I don’t know if this information is any help to you, but I wish you well. I have been watch and followed with blood work for several years and the MDS talk just started about a year ago. Donna

[Donna]

Diana………….The article, although way above my head, is interesting. Donna

[Donna]

Ray…..If you stay at one of those places that put up transplant patients, do you have to be there alone or can your spouse stay sometimes? It sounds like a lot to go through. Donna

Lillian….Did you make a decision yet? Donna

[Donna]

Lillian……Would you just have to be in a hotel, etc. to be near the hospital or is for the isolation to avoid germs? Would you have to be alone? Donna

[Donna]

Lillian……My heart goes out to you. It is a tough decision to make. I think about it ahead of time because my doctor said I MIGHT be a candidate for a mini transplant. We have not discussed it because I think he means down the road. What makes someone a candidate? Do you know? Also, do you know if there is a cut off age? What is the reason you have to decide very soon? Where do you have to be for three months? Isolation? Do you stay in the hospital? Donna

[Donna]

Lillian………..I am 72 and my WBC and platelets are the ones that are going down. My doctors said the same, because of my age I would not be a candidate for the BMT but I might be a candidate for the mini one. It’s all so strange to me because he said I am “pre-MDS”, evolving into it I guess. My WBC runs between 1.4 and 2.8. My platelets have been going down steadily, last at 67,000. He is talking about Decagon for me when my platelets get to 50,000. I had read that the counts usually go down during the first few cycles of Decagon, but I see your have improved. That is so good. My hemoglobin is about 10. When do they do the mini transplant? I mean, can you have the Decagen for a year or so and then decide? When does your doctor recommend it? It really is a tough decision. I guess a lot would be dependent upon the odds. I have a few mutations that worry me a bit. They have been following me for several years now. It’s weird and scary at the same time. Donna

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