Looking for Information on MDS/Vidaza

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• March 9, 2005 at 4:54 am #4576
  susan rose

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  Hello, my Dad (68) has suffered from MDS for years but has recently started deteriorating quickly.He is transfusion dependent, approx. every 3 weeks now, just started Vidaza this week. He is very weak,scared about what to expect. My concern is his MD didn’t even suggest Vidaza until a nurse recently passed on info to my Dad in transfusion clinic. MD is a Hematologist, yet doesn’t seem up on any advances. My Dad is too weak/sick to research this on his own. Any comments on Vidaza experiences or other treatments for this?Please share any ideas, I could use insight from others.Thank you, Susan Rose.

  March 9, 2005 at 5:26 am #4577
  Kathy G

  Member

  My Dad (69)just finished his 3rd round of Vidaza. He has done pretty well with it. He takes an anti-nausea med beforehand so he doesn’t have any problems with this. The biggest problem he has was the shots to his stomach area (they didn’t do it this round)they didn’t heal easily and bled a lot. He is pretty drained by early evening and runs a low grade fever. It is changing his numbers but we don’t really know what it’s doing in the long term yet. My Dad is RAEB with evolving CMML (hoping Vidaza is the answer for him).
  They do blood work on him a couple times a week mainly watching his platelets which have been low.
  Hope this helps.
  There are a couple others who started Vidaza in Jan and hopefully they’ll post too.

  Kathy

  March 9, 2005 at 5:42 am #4578
  susan rose

  Member

  Thanks Kathy!
  I have just been searching and trying to educate myself somewhat on these treatments.My Dad has been reluctant to go beyond the transfusions and Epogen but we really encouraged him try Vidaza due to his weakness, frequency of transfusions. I am realizing seriousness of this new treatment now.It is so hard to know when potential harm outweighs good.He also has Congestive Heart Failure which is another concern. I appreciate your comments, my head is swimming from the info available! Susan Rose

  March 9, 2005 at 6:29 am #4579
  tahoedonner

  Member

  You can go to the Pharmion WEB site to ask specific questions re Vidaza. There are so many unique MDS situations that no one answer fits all.

  A Pharmion rep told me on the phone that they are not monitoring results of the increased number of people who have taken Vidaza since it was approved last summer and that they have no information re those who take it at a reduced dosage. They do indicate that it is a treatment not a cure.

  I took it for only one week and had very bad side effects to the extent that I decided to stop taking it. Paradoxically,I went into full remission. My numbers are now slipping and my MD is recommending Vidaza at a lower dosage. I am very wary and will probably decide to go with palliative care so that I can better use the time I have left, since I still feel fine and don’t want to experience the adverse side effects again. I personally don’t see a good ratio of good versus bad results for me, but , as I said, there is no simple answer.

  March 9, 2005 at 1:47 pm #4580
  sarah

  Member

  Susan, what is your Dad’s classification and age?

  March 9, 2005 at 1:49 pm #4581
  eve

  Member

  hi susan

  my dad has been on vidaza for over 1 year – it has help to give him more time in-between txs -side effects have been minimal – of course everyone reacts differently – is your dad being treated at a center of excellence – it doesn’t sound like it – check this website for a center near him – these centers are much more familiar with treating mds that regular hemodocs

  eve

  March 9, 2005 at 1:57 pm #4582
  Terri

  Member

  Susan Rose, You can look at some of my other post, my husband seems to be doing well with the Vidaza so far. He did 6 rounds last year and we are now on another cycle he finished four so far. Look at my post that I just put in Doctors Visit. We are pleased. However we also consulted a Nutritionist last year or started Bob on a lot of Vitamins and supplements and healthy diet. I think this in conjunction with the Vidaza is keeping him where he is at.

  Our Doctor on his monthly visit has a smear slide made when they do the CBC and he views this for abnormal cells. This is what caught Bobs blast this October that the doctor decided to get him back on the Vidaza. Don’t think he would have done the BMB if he did not see the abnormal cells.

  I hope your Dad starts feeling better

  March 9, 2005 at 3:44 pm #4583
  Neil

  Member

  Hi Susan,
  It is very important to have an experienced hematologist treating your dad. MDS has a number of classifications. Knowledge of how to treat each class is important. Those docs that have this knowledge can provide the correct options quickly.
  One doc in your area is Dr Azra Raza at Rush Presbyterian. If you phone Laurie Lisak at 312-455-8474 you can obtain a wealth of information very quickly. Dr Raza typically works with the existing docs. She recommends a course of action that can be carried out by the existing docs or if your dad is also in Chicago, he could be treated at Rush.
  It would be worth the phone call to get their info

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