December 29, 2004 at 11:43 pm #2468
I have been diagnosed with CMML-2 with an increased risk for it to develop into the acute version. I am looking for information regarding the success of mini-bone marrow transplant or mini-stemcell transplant with a non-related donor. I was diagnosed in October of this year. My platelet count and red blood count appear low normal but my white cells at at 29.2. In addition I would like to hear of any drugs that appear successful for this condition. I’m sure I am not alone. Looking for help and contacts.
Edith.December 30, 2004 at 1:13 am #2469
Hi Edith,I am sorry that I have to welcome you to this board. You will find a lot of help here. We did too. My husband , George has CMML.CMML-2 means secondary CMML? I never saw it like this. George is 70 years old, was dx Oct/2003. So far he tried the arsenic treatment, didn’t work, than he started Vidaza treatment in Aug/2004. After the first and second round his counts were getting a lot better, but with the last two treatment everything went downhill. We are suspecting the reason, it is very complicated. He has an appointment with Dr List in Tampa at the Moffitt cancer center January 12.We were informed, that he is the top MDS specialist .We are hoping so much that he can give George the right direction for treatment.There is a lot of new medicin coming out, and a lot of new treatment options. There are people on this board, who know a lot more than I , and you will have a lot of usefull information. Anymore question, I will be happy to answer. My English is not to good, I hope I didn’t make to many mistake.KateDecember 30, 2004 at 5:05 am #2470
I to am sorry to welcome you to the board, but it is the right place to discover different options. By CMML2 I assume yours is secondary because past Cancer treatments for something else. I was diagnosed April 03. My RBC’s are normal, but had low platelet and low WBC, now platelets are pretty good (118,000), WBC is 23.6 and climbing monthly. CMMl is a hard one to treat, we don’t fall into a fixed catagory, we are both MDS, MPD. There are trials out there, you just have to hunt for them. What is you age, and did your BMP show any chromosone abnormality.
First of all, done go by the survival time they give you, it is different for all of us. Don’t be afraid to question you Doc, and ask for copies of all work you have done, keep you won records. Others can help you more than I. Good luck, and don’t let it get you down, it can consume your thoughts if you let it.
Jack RDecember 30, 2004 at 8:45 am #2471
Edith, I was diagnosed with CMML in Feb 2003. I used alternative methods of nutriton and supplements mostly overseen by a Naturpathic/acupunturist. It did help me to cleanse and strengthen my body. Unfortunately, I overstressed myself during the last 5 weeks of 2003 and ended up in the hospital the beginning of 2004 after and extreme leukemic event. WBC of 385K with 95% blast and 85% leukemic. In March 2004, I had SCT with brother as donor. Now no CMML found in bone marrow or blood. I am cured but working my way through the side effects of treatments. JimDecember 30, 2004 at 3:29 pm #2472
My mom was also diagnosed with CMML in October…how are you feeling? Do you know the results of the cytogenetics testing? How do you find the wait times? We live in hamilton,ontario and are finding the wait times trying. We met with the hem. doctor in mid November and we were told they were going to set up an appointment with the bone marrow transplant team at McMaster University Medical Centre…but the appointment still hasn’t been set up and we are getting anxious. Her doctor was also setting up a meeting with local leukemia specialists to discuss her case,which is awesome, but still hasn’t happened.I just wish everything moved faster.
You will find many wonderful and supportive people on this website. I’m so sorry you have to fight this terrible disease. Take care, Jody
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