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MDS Myelodysplastic syndromes

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  #1  
Old Wed Feb 10, 2010, 12:01 AM
Bob Bob is offline
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Vidaza w/low platelet

I just came back from the Dr. office with my mother after her second BMB result and the Dr. confirmed that she has MDS. Dr. said risk category is Int-1 based on a IPSS score of 0.5 (blast < 5%, normal karyotype, 2-3 cell line cytopenia. WBC 3.8, RBC 2.65, Hgb 10.1, Platelet 12,000. The Dr. wants to start her on Vidaza next Monday. But after reading some of the posts and with her platelets so low, shouldn't the Dr. try and increase her platelets before starting Vidaza? She has had multiple platelet transfusion and will get one the Friday before starting the treatment, but is that enough? Also, Dr. said that Vidaza should be given for 7 consecutive days, but because they can't administer it on the weekend (closed), it would be a M-F, M,Tu schedule. Is that OK?
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Old Wed Feb 10, 2010, 05:36 AM
Birgitta-A Birgitta-A is offline
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Vidaza

Hi Bob,
My doctor who is a specialist in Vidaza treatment for MDS says that nobody knows the best dose of Vidaza. One member of this forum is getting a low dose during 10 days with very good result.

Here is a link to results from a trial with 3 different doses. Group B corresponds to your motherís dose an has a 65% response rate:
http://ash.confex.com/ash/2009/webpr...aper21649.html

You are right about her low platelets. About 65% of the patients get thrombocytopenia during Vidaza treatment. One member of this forum (Kirby) is getting Promacta for his low platelets with good result as you can read in posts from him.

Your mother's other results (blasts, karyotype, WBCs and Hgb) are very good and perhaps it is more important to treat the low platelets than her bone marrow.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent from dx, Desferal and Exjade for iron overload, Neupogen 2 injections/week for low WBCs
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  #3  
Old Wed Feb 10, 2010, 01:43 PM
Bob Bob is offline
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Thanks Birgitta-A, I was hoping you would respond to my post. I am new to this disease. My mother informed me a couple weeks prior to her second BMB. From what I know from the BMB, it seems like everything in the biopsy looked normal, other than her low platelets. Dec. 2009 is when she went into the hospital complaining about dizziness and faintness. They discovered that all her 3 blood cells were low (RBC, WBC, & platelet). I know they did a battery of tests to rule other things out. So the only symptoms now is the low platelet. So I am concerned that Vidaza may not be the right treatment and it also seem too aggressive, but I'm not informed enough to question the Dr. Dr. said there is a 20% chance of good response from the treatment and this was the only option presented to us. Dr. wants her to be less dependent on transfusions. But is Vidaza the right treatment, when BMB doesn't show anything abnormal. She is scheduled to start on Monday and I'm trying to find out as much information as possible to see if there are other options before trying Vidaza.
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Old Wed Feb 10, 2010, 03:33 PM
tytd tytd is offline
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refractory thrombocytopenia

Hello Bob and mother,
I know exactly what your mother is going through as I will likely find myself facing a similar situation in the future. I wish I could give you and your mother a good answer but refractory thrombocytopenia remains a clinical challenge. My platelets are low at 20k but have not yet reached the point of needing platelet transfusions. I also did not have any blasts or chromosome abnormalities in the BMB but was reported to have mild dysplasia. They tried me on a few week trial of Prednisone to make sure I did not have an immune mediated ITP which was unsuccessful. I too, have debated about Vidaza if it comes to the point that I need something and I think it is certainly an option but I wonder like Birgitta does as to whether a clinical trial with Promacta or "off-label" use of it might be better. Both options are fraught with "what-ifs". May I ask if your mother's bone marrow showed hypercellularity or dysplasia in all cell lines? Also has your mother's MD had much experience with MDS or Vidaza?? Please keep us informed as to how she does and I wish her the best of luck. Tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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Old Wed Feb 10, 2010, 11:23 PM
Bob Bob is offline
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Hi Tytd,
I'm not sure how to read the BMB report. But here are few excerpts from the report. 35 to 40% Cellular Bone marrow with marked decrease of megakaryopoieses. Marrow is normal or slightly hypocellular for the patient age. The erythroid cells show normoblastic maturation. The clot sections show about 40% cellular bone marrow with active hematopoiesis in all three cell lines.

The Dr. said she has been using Vidaza this since 2008. She has other MDS patients, but don't know how many. Thanks for the well wishes and I will keep you informed. Good luck to you too.
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  #6  
Old Thu Feb 11, 2010, 05:07 AM
Birgitta-A Birgitta-A is offline
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Vidaza?

Hi Bob,
You know it is true that it is better to not have so many blood transfusions but I have received 110 units of packed red blood cells without any other complication than iron overload that is treated with Desferal and Exjade.

Megakaryopoieses means the production of the cells that produces platelets. 40% cellular bone marrow is very good for a MDS patient.

You could look at this warning list for low platelets. As you can see a lot of drugs - specially pain killers - may decrease the platelets. Then many types of food that is considered to be good can increase bleeding. It is OK for persons with normal platelets to eat blueberries and chocolate, drink green tea etc because the risk for arteriosclerosis is decreased but we should avoid that kind of food.
http://www.pdsa.org/about-itp/warnings.html
Kind regards
Birgitta-A
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  #7  
Old Thu Feb 11, 2010, 12:09 PM
tytd tytd is offline
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thrombocytopenia

Hello Bob,
I assume that her bone marrow must have had some dysplastic cells("funny looking cells") to be classified as MDS. I would make sure that she hasn't taken any drugs, either over-the-counter or prescribed, that might affect the bone marrow or cells. I know that it is not always feasible to get a second opinion but my hometown hematologist did send me for a confirmatory opinion at an MDS Center of Excellence. You can find these listed on this website. She may already be going to one of these centers, if not, requesting that she see an expert there might be something to consider. Tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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Old Thu Feb 11, 2010, 01:22 PM
Bob Bob is offline
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No, we are not at an MDS Center of Excellence. I believe UCLA medical is the one near us. My mom belongs to Kaiser. Would you happen to know the approximate cost to get a second opinion? We were told that her symptons are "consistent with MDS". Dr. gave us an IPSS score of .5 based on the fact that all 3 of her blood cells were low. I haven't been told of an "funny looking cells" which is why it still concerns me if Vidaza is the right treatment.

My mom was on an arthritis drug about the same time her platelet started to drop. In Aug/08 her platelets were 220. In Sept./09 it was 78. That is when they took her off the arthritis drug. But in Dec/09 platelet down to 24, Jan. 1 2010 down to 20. End of Jan. down to 12 and last week when we checked it went up to 14. If the arthritis drug was the cause, how soon after being off of it could we expect the platelets to come back?
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  #9  
Old Thu Feb 11, 2010, 01:40 PM
Hopeful Hopeful is offline
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Hi Bob,

I would recommend seeing Dr. Paquette at UCLA. He is excellent and is an expert in bone marrow failure diseases (not just MDS). His consult rate is $335/hour (not including labs). Just be organized and bring copies of all previous labs and biopies with you. He will even review your mother's BMB slides, which is extremely beneficial.

I'm not sure that he would classify your mother's disease as MDS. It may be more of a drug induced Aplastic Anemia. I was told (by him) that in the absense of increased blasts or chromosomal abnormalities, *significant* dysplasia is needed for a diagnosis of MDS - not just mild dysplasia. Mild dysplasia can be seen with aplastic anemia.

If that is the case, perhaps your mother will respond to a course of Cyclosporine vs Vidaza.

My worst nemesis is also low platelets. A year ago they were under 10k, and now they are in the 60k's thanks to immune suppressant therapy.
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #10  
Old Thu Feb 11, 2010, 01:43 PM
Neil Cuadra Neil Cuadra is offline
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Bob,

Check your insurance. My wife's policy at the time covered a second opinion and even a third opinion.
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  #11  
Old Thu Feb 11, 2010, 01:51 PM
tytd tytd is offline
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MDS?

Yes, I was also going to recommend that your mother see Dr. Paquette at UCLA based on my listening to one of his lectures on the aamds.org web site. I know nothing about the Kaiser systems coverage for second opinions but perhaps the UCLA Hematology-Oncology division could inform you about this. What arthritis drug was your mother on? I would think that if it was related that her counts would have improved off of it. Tytd
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possible low to int-1 MDS with predominant thrombocytopenia, mild anemia, dx 7/08, in watch and wait mode
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  #12  
Old Fri Feb 12, 2010, 06:02 AM
Birgitta-A Birgitta-A is offline
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Platelets

Hi Bob,
If it only was the arthritis drug that caused the low platelets your mother's platelets should have increased during the fall 2009. Look at all other drugs and food that can decrease the platelets according to the warning list.

Good that your mother doesn't have any bleedings though her platelets are low !
Kind regards
Birgitta-A
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  #13  
Old Tue Apr 6, 2010, 02:32 AM
Bob Bob is offline
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Update on my Mom

My mother started on her Vidaza treatment early February (7 day cycle w/weekends off). She was also given a weekly shot of Procrit and a daily injection of Neupogen (about 21 days straight, with very little or no increase WBC). All her counts got extremely low: RBD below 2, platelets below 10, WBC below 1. About 3 weeks into the first cycle, she caught a virus and was hospitalized for over a week. At this time she was receiving platelets transfusion every 2-3 days. After she recovered from the hospital, she started her second cycle about a week ago at half the regular dosage. She also signed up to get Nplate, if things got worse w/her platelet. During this time we finally got an appoitment to see Dr. Paquette at UCLA medical. He said that our BMB report did not include a cytogenetic study and FISH report and couldn't make a diagnosis. He also became suspicious of the fact that my mother joint stiffness in her wrist preceded her low blood count symptoms. He was amazed at how stiff her wrist is. He looked for some ANA report, but again wasn't in the medical records provided. My mother did remember in May that an ANA was done and it came out abnormal. Dr. Paquette contacted our hematologist and my mothers Dr. stopped the Vidaza treatement on the 3rd day and ordered more test to see if an autoimmune disease may also be part of this. What is interesting is that my mother accidentally continued with the Decadron (premed for chemo ), which is also used to treat antoimmune disease and at her last CBC, her platelet was holding pretty high at 60. Not sure if it is the Vidaza or Decadron working, or something else. But not being able to find the exact diagnosis has been frustrating. I'm hoping these battery of new tests will reveal something. She is now seeing a Rheumatologist.
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Old Fri Apr 9, 2010, 06:21 PM
Julianna Julianna is offline
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Hang in there Bob

Your Mother must really appreciate your care for her.

Yeah sounds like you are really getting the run around! Frustrating... absolutely!!!!! Hope they can work this out soon. We really do have to be on the front foot with what's happening don't we... or they may just miss something important!

Hang in there Bob... I understand your anguish. The uncertainty of these conditions is painful at times. A day at a time is how I try to cope. Step by step. My next important appointment is a month away... so I just think of what today has for me. And will think of tomorrow when it comes.

Hope this helps,

Jules
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #15  
Old Tue Sep 28, 2010, 07:49 AM
lfeinsmith lfeinsmith is offline
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thromocytopenia

I have MDS since December 06. I have no RX .My Hgb is 13.1,wbc 4200,platelet 24000, no blasts.Are there any options for thrombocytopenia?

Les
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  #16  
Old Tue Sep 28, 2010, 09:56 AM
knstone knstone is offline
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thrombocytopenia options

Hi Leslie,
I've sent you a private message regarding Promacta for platelets.
Regards,
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #17  
Old Tue Sep 28, 2010, 10:33 AM
mcgill54 mcgill54 is offline
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Low Platelets

Hi Lesley S, I am in a similar situation, with dx of CMML, platelets between37-40. The dr has discussed NPlate (romiplostim) if they get to 20. Also at my age, almost 87, they do platelet transfusions. Other counts are ok so far,since Feb10 when this all started, and I feel fine. Best wishes McGill 54
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  #18  
Old Thu Sep 19, 2013, 07:47 AM
lfeinsmith lfeinsmith is offline
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Starting Vidaza

After watchful waiting since Dec 2006 I will start Vidaza this Monday .
Currently Hgb 10.9,neutrophile 600,platelet 28000.
3% blasts,Int risk 1,RcmD,

My doctor wants to have me take prophylactic antibiotics Valtrex,Diflucan,and levaquin
each once daily.

I read post re Promacta,Im familiar with nplate which he may give me.

LES
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