cmml and vidaza

[greg]

Hi, folks. Seems there’s another Greg lurking about, so i’ll call myself Greg J. My mom (CMML 9/03) and I just met Dr. List in Tampa last week. He’s very methodical and articulate. He said Vidaza is definitely working for CMML. He has roughly 12 patients with CMML on Vidaza, and 9 are responding in some form. Andrea in California, how has your mom responded? Anyone other CMMLers on Vidaza? Thanks. Greg J

[Kathy G]

My Dad is RAEB with evolving CMML (as of Nov 04 on the CMML – RAEB Nov 03)and he started Vidaza in Jan 04 has had 2 rounds so far. His blood blasts were 10% when he started and showed 2% at the start of the 2nd round so there’s improvement – we are hopeful that there will be continued positive progress. He is being treated in Jacksonville at Mayo.

[shirlsgirl]

Hi Greg,

Would love to hear your mom’s story. How she was diagnosed, symptoms, treatments etc. It seems as though different people with the same diagnosis can have such different experiences with their illness. Strange.

My mom has been pretty good so far, thank goodness! She hasn’t tried Vidaza, however, she will be trying Gleevec soon. I don’t think she has any blasts yet…still at the earlier stages I think.

take care, Jody

[greg]

Jody: My mom was diagnosed in Sept. 03 with “indolent” cmml. All her counts were normal except the neutrophils below 1000. Now the neutrophils are back up, but platelets are in the 80s. Low blasts, no chromosome abnormalities. Dr List’s point is if you start vidaza early, it can alter the genetics of the disease, I think. So if blast counts are trending upward but still low, Vidaza should be considered.
I’ve done a lot of research and there does seem to be a very wide range of cmml treatments and prognosis. The stuff about 1-2 years is misleading. The Dusseldorf group points to about 6% of patients who live something like 150 months with only transfusions. The key seems to be the total wbc count to determine if you are more mds or myeloproliferative. Blasts, of course, are the bitter enemy, too.

Does your mom have any bone pain, particularly at night?

List also said autoimmune disorders, like arthritis and skin problems, are more common with CMML.

Look forward to hearing from you. Greg J

[shirlsgirl]

Hi Greg,

I think my mom’s is the myeloproliferative type. Her hgb and rbc’s are normal. Her wbc’s have been running between 11000-19000 and main problem has been her platelets. (however they have been at normal levels for the past few weeks)

No bone pain or night sweats.

She does have an autoimmune disorder though..ulcerative proctitis which started just about the same time as her bruising did (before being diagnosed with CMML)

It’s great to hear the statistics about 6% surviving ~150 months and hey, let’s hope our mothers surpass that number.

Will your mom be starting Vidaza? How is she feeling? Her numbers are very good. It sounds like she’s in good hands with Dr. List. I’ve heard his name mentioned quite often on this forum and he sounds very knowledgable.

all the best to you and your mom

ciao, Jody

[mommachkate]

Hi Greg, My husband is an inpatient in the Moffitt cancer center. He had cemo 3 weeks ago. His treatment is under the direction of Dr List, with a lot of specialist participation. I am there with him most of the time, just came home for a few days to take care some business.George had 4 round of Vidaza here in Miami from Aug to November. The first two worked very well, but his numbers went downhill fast with the next two. I belive that the infections , he was having and was not treated, affected the Vidaza treatment. Unfortunately he didn’t have the right doctor. But he is getting the best care possible now. Today he had the BMB which will deside whether he needs more treatment or he can come home. Is your Mom going to start Vidaza? Where is She going to be treated? Best wishes Kate

[Harold]

Greg, I am 54 years old and was diagnosed during routine physical with CMML in Oct. 03. BMB showed 5% blasts. I tried Arsenic at Duke and another study drug (VNP40101M) at Duke. Neither helped. Started Vidaza 10/4/2004. Bone marrow blast count at start of Vidaza was 18-20%. BMB every 2-3 months showed slight improvement in cellularity and reduced blasts but last week’s BMB showed only 7% blasts. My local hematologist thinks the Vidaza is helping, although it’s not a “home run.” I started the 6th Vidaza cycle today. I have not experienced any complications or significant side effects from the Vidaza. Long term goal is remission and transplant. Since my diagnosis, I’ve maintained a reasonably normal life style, working each day, exercising regularly, etc.

[Kel]

Vidaza seems to be working for my dad – (Diag 11/03) he is MDS with RARS, his HGB has been as low as 7.2 and he has needed transfusions. He has been on weekly procrit for over 10 months and will start round two of Vidaza next week. He didn’t need his procrit this week as his HGB was 12! We get very excited about double digits these days. He showed no blast increase last month. He does suffer extreme nausea from the Vidaza after about day 4, but takes several meds to help with that. I pray it keeps working and treatments work for you all as well.
kelly

[Jack_dup1]

Hi Greg,
I haven’t been able to post lately. My numbers have started to climb the last few months. My WBC’s are at 29, mono’s 3500, platelets and RBC normal. My local Hematologist has suggested Vidaza, I have put it off. I am going to MD Anderson in Houston, March 21 for 3 days, to see what they have available, before I decide on Vidaza. I feel very healthy and work every other week. I mainly fight colds, my works requires me to fly wherever I go, so it’s hard to avoid the bugs. Give your Mother my regards and hang in there.
Jack R.

[greg]

Jack et al: I want to make clear that Dr. List stated that Vidaza is working better for CMML than most other types. It seems each institution has its drug preference, so I’m sure you’ll be careful with what MDA advises. Good luck down there and let me know their assessment.
Best, Greg

[Andrea]

Greg:

Sorry that it took me s o long to reply. I haven’t been on the site lately. My mom suffered from an unknown infection and had to be hospitalized for two weeks. It was also compromised with a deep vein thrombosis in her leg. She was pretty weak when we brought her home but is improving. Her numbers are pretty good,
WBC 7.7 Hgb 12.4 (!) Platelets 302,000 They are the best since her diagnosis. She did have three units of blood in the hospital. Probably needed them because of the infection. She didn’t need Procrit this week because of those numbers, but the doctor is hesitant to start her up on the Vidaza again since she is very weak.
He did start her on Thalidomide on Monday.

Her last bone marrow biopsy after three months of Vidaza was continuing to show improvement, I didn’t get numbers from the doctor, but all in all he was encouraged. I hope that she can get stronger and start it again. She had few side effects. No nausea because of the Zofran med. Loss of appetite was significant, though. She lost weight when she didn’t have any to lose,

Hope your mom does great!!

Andrea

[shirlsgirl]

Hi Andrea,

Sorry about your mom’s hospital stay. It must be nice to have her home. What great numbers!! I’m so glad that her bm is showing signs of improvement. That’s awesome. Hope the thalidomide works for her, and hopefully her appetite improves. Please keep us posted.

take care, Jody

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