how long can you live with mds

[dee]

My dad had 2 more units of blood after 7 days on vidaza. His WBC 1.7 RBC 2.21 Hemoglobin 6.7 Hematocrit 18.8 Platelets 32. He hasn't had any side effects to Vidaza. He doesn't like the 3 shots in stomach for 7 days. My dad (72) has MDS RAEB with excess blasts. Won't see results from vidaza until after 2 or more cycles. Is there a diet you should be on with MDS? dee

[Steve Kessler]

The old survivability statistics were compiled before four commonly used drugs now used to treat MDS were released. My prognosis was 2-2 1/2 years and that was 7 years ago. I'm still doing fine!

[Ruth Cuadra]

Dee,

I'm not aware of any specific diet recommendations for MDS, but we have a discussion thread about holistic treatment of MDS, including food and supplements, that you might want to read.

Regards,
Ruth

[dee]

Thanks for your info. I will pass this on to my dad, Steve it will give him hope. Dee

[Alison]

Hi There

My Dad also started Vidaza in January 2008. I am interested to know how your's is doing. My Dad has just completed his third cycle but still seems to be transfusion dependent - average of 2 units per week. We are starting to become concerned that he may be amongst those it doesn't work for and we're all thinking where to from here? Would love to find out more about how its going with your Dad.

Regards
Alison

[Birgitta-A]

Hi Alison,
As far as I understand it is uncommon that patients respond after three cycles of Vidaza - often up to six cycles are needed.

At the ASH conference 2007 they showed quite good results when they gave Vidaza 75 mg/kvm only 5 days instead of 7 days.

Here are some results: AZA 75 mg/m/day x 5 days. Number of patients = 49. Most pts are FAB classification RA/RARS (57%) or RAEB (30%). 67% achieved transfusion independence. 39% RBC increased , 18% platelets increased, 8% neutrophil increased. Any haematological improvement 57% .

Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusion, Neupogen 2 injections/week, waiting for approval of Eltrombopag for my platelets so I dare start with Vidaza

[Alison]

Hi There

Wow, this sounds very interesting. I'm assuming that any alteration in the Vidaza dosage would need to be in timeous consultation with my Dad's haemotologist? How open are doctors to these types of changes? We were told that he should show some response to Vidaza around the 3 cycle which is obviously too soon if I read some of the posts on this forum.

I'd like to ask another question - I have noticed that some people have indicated that they have "excess blast cells" - what does this mean (apologies for my ignorance!)?.

I really appreciate the support.

Regards
Alison

[Birgitta-A]

Hi Alison,
Sorry! Your question about blast cells disappeared so I never saw it - here is an answer about excess blast cells (immature blood cells):
"MDS is divided into five different subtypes that are classified according to the number and appearance of blast cells in the bone marrow. It is important for doctors to know the type of MDS a patient has, because each subtype affects patients differently and requires specific treatment. The International Prognostic Scoring System (IPSS) can help the doctor to determine the best treatment for an individual patient. The subtypes are as follows:

Refractory anemia (RA). Bone marrow with less than 5% blast cells and abnormal red blood cell blasts.
Refractory anemia with ring sideroblasts (RARS). Bone marrow with less than 5% blasts and characteristic abnormalities in red blood cells.
Refractory anemia with excess blasts (RAEB). Bone marrow with 5-20% blast cells, and higher risk of changing into acute leukemia over time.
Refractory anemia with excess blasts in transformation (RAEBT). Bone marrow with 21-30% blast cells. This form is most likely to change into acute leukemia.
Chronic myelomonocytic leukemia (CMML). Marrow with 5-20% blasts and excess monocytes (a specific type of white blood cell).
Kind regards
Birgitta-A

[choijk]

Hi,
My dad just completed his 3rd round of Vidaza (IV) as well but he is still transfusion dependent. He receives 2 units every 2 weeks. So 1 unit every week. We are hoping that he will be transfusion indepedent.

[choijk]

I forgot to add that there seems to be some progress. His plts have always remained normal, to below normal. During Vidaza, it goes down to 55 but the last CBC showed that it went up to 145, the highest it's been in awhile. Usually he is somewhere between 90-120.
The wbc's have remained strong, for MDS. He is somewhere between 3.0 to 3.4

[Ruth Cuadra]

Hi, June...glad to hear your father seems is doing well with Vidaza. Hopefully with his platelets responding so well, his red count will do the same.

Regards,
Ruth

[Rich D]

I have had MDS since around 2006, maybe earlier, but I rarely went to a doc, and in 2006 I seemed a little fatigued so I saw the doc, he sent me for blood tests, and said he thought I had MDS. Went to Florida Cancer Institute and they put me on Procrit, which did nothing. I was disgusted and didn't return until the beginning of 2012. Had a bone aspiration and biopsy, saw two different oncologists at different places, one said I had it, the other said no. Went back to Florida Cancer and they put me on a 7 day two shot each day program, the first day of each session they gave me decodron 100 mg(?) and a saline solution preceding the vicadin. The decadron is supposed to help with nausea. I didn't have that problem but the drug was like speed to me. Stayed up all day and night each Monday. Talked to the doc and we cut the decodron to 60mg. A little better, but still sped through Mon. night.

When I started by Vidaza my hemoglobin was between high 9's and low 10's. It dropped to 7.2, and I went 3 times for blood, two bags each time. That was last June. From there the vidaza began to kick in, gradually at first, then pretty much up a little each each session. Anyway ! started my 12 session and my count is 12. After about session eight we went down to 5 sessions instead of seven, only going for 1 blood test during my off weeks.

I have neuropathy, and that has been much more aggravating than the MDS. I don't have a port, so my vidaza is given in my arms and stomach. A little painful and sore muscles the first four sessions, then it gradually decreased.

More good news for us, the oral version of vidaza should be available in early 2014. Then just a pill and maybe two blood test a month.

I've been pretty lucky so far. I try to do a lot of research, I have a world class oncologist, Dr. Maholtra at Florida Cancer Institute in Spring Hill, FL. and we work very well together.

I don't have updated expectancies, but do believe more people are having positive results than back in 08/09.

Sorry for the ramblings and poor grammar, but remember this is Tuesday, so I was up all Monday night.

The best to you all.

Rich

[Birgitta-A]

Hi Rich,
Very interesting story!

I wonder if they told you about what type of MDS you were supposed to have 2006?

Six years without symptoms is very good. Do you know what type of MDS you have now?

Wonderful that you have responded so well to Vidaza!

Have they told you anything about the neuropathy? Have you tried Vit B1?

Good with oral Vidaza in the pipeline! Interestingly there are now studies that show that real low risk patients have a lower over all survival with Vidaza than with best supportive care. In EU Vidaza is only approved for high-risk MDS.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, supportive therapy with txs, iron chelating drugs and Neupogen for low WBC until 2010. Good results during 33 months with Thalidomide + Prednisone. Now transfusion dependent and eventually getting Revlimid.

[mymomismyhero]

All,
My mom has CMML and is 73 years old. That Dacogen (3 of 6 treatments) did nothing for her MDS but toxified her lungs. I was told yesterday by her cancer center nurse I should probably put in for FMLA and spend quality time with her. She told me this without even knowing what her Cleveland cancer doctor had planned for her. Anyhow, I took her for blood work yesterday and her counts were all real low. She got typed and I took her back this morning for her platelets and 2 unit transfusion. She was in bad shape the last couple of days. Her oxygen level went down to the low 60's this morning while I was getting her ready. She almost passed out on me. By the time I got her to the hospital they couldn't get her oxygen level past the low 80's even on 12 liters.

I called both her cancer doctors and neither seemed to give a crap. The one who came through for us (and always does) and got her admitted was her family doctor. Finally about half way through her 2nd bag of blood her oxygen level came up to about 92 but still with 12 liters.

She is suppose to start Vidaza Monday and I am wondering if any of you can tell me how effective it is on 73 year old patients with CMML?

Thanks to all,
Sheri

[Birgitta-A]

Hi Sheri,
You know I don't know much about CMML but I found this study about Vidaza (Azacitidine) in CMML patients: https://ash.confex.com/ash/2011/webp...aper37800.html

"Conclusion: In this population of CMML patients with generally poor prognostic features, the overall response rates were 43% and overall survival 21 mo with Vidaza treatment and similar to that previously reported in higher risk MDS.

No significant predictive factors for response to Vidaza were identified, but marrow blast %, increased WBC count and spleen enlargement were adverse prognostic factors for survival.

Hope your mother will respond!
Kind regards
Birgitta-A

[usaf1125]

Originally Posted by dee

My dad had 2 more units of blood after 7 days on vidaza. His WBC 1.7 RBC 2.21 Hemoglobin 6.7 Hematocrit 18.8 Platelets 32. He hasn't had any side effects to Vidaza. He doesn't like the 3 shots in stomach for 7 days. My dad (72) has MDS RAEB with excess blasts. Won't see results from vidaza until after 2 or more cycles. Is there a diet you should be on with MDS? dee

I have had MDS since 7/15/03. Only thing I take is Procrit 40,000 ML, injected once a week. I have had 346 units of blood since 2003, I get 2 units every 2 or 3 weeks depending on CFT level. Have never used Vidaza. Never heard of a special diet. I feel pretty good, except for being tired. I am now 81, looking forward to at least 90, I hope. You can't compare numbers they vary with each person. Best for your Father.