Seeking information regarding Vizada/BMT

[Anna]

My mom was diagnosed with MDS in May 2006. She received monthly procrit shots until April 2008. She then started Vizada, 7 days of treatment every 28 days. She has been getting blood transfusions and platelets every week since starting Vizada. She does not tell me much information about her diagnosis so I don't know the results of any of her blood tests. She tries to downplay her disease and doesn't talk about it much. She does tell me that the need for blood and platelets is due to the Vizada and is nothing to be concerned about. This month will be her 6th round and she told me this past weekend that the doctor says they will continue on the Vizada indefinately. I guess I'm questioning when/how do we decide that the Vizada isn't working and we need to begin thinking about a BMT. My mom is 67, do you think they would do a BMT on her? The doctor has mentioned it to her briefly but didn't give her a lot of information about it.

I was under the impression that Vizada could cure her, but after doing some reading, I realize that is not the case. I don't think my Mom realizes that as well. Her doctor does not like to give bad news, so although my Mom is limited in what she will share with me, I think part of it is that her doctor is not telling her everything she needs to know to make an informed decision on how to proceed with her treatment. I finally acknowleged yesterday that she will most likely die from this disease and the Vizada is just extending her life for a few months (years?).

Sorry for rambling, I guess I'm wondering how long should she continue with the Vizada? What other options does she have? When do we consider a BMT?

Thanks for any advice you may have,
Anna

[Birgitta-A]

Hi Anna,
Vidaza should begin to have effect after 6 cycles but it can take more time - you have probably seen that about 70 % of the patients initially get anemia, about 65 % low platelets and 45 % low white blood cells - then about 60 % of the patients respond with some kind of hematological improvement.

It is impossible for you to know if your mother is responding if she won´t tell you about her test results. If the dr thinks she should continue with Vidaza she can have responded.

Stem cell transfusion in a patient that is 67 yo is dangerous - you have better read about SCT before you discuss with her but there are many members in this forum that have had good effect of SCT - you could look at the search function.
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusions for iron overload, Neupogen 2 injections/week for low WBC:s, asymptomatic

[Neil Cuadra]

Anna,

Do you live near your mom? I'm asking because I wonder if you could accompany her to her doctor's appointments. If she says you shouldn't go because "it's nothing" or "I don't want you to worry", let her know that you worry more because you aren't there to hear what the doctor has to say. If you could get your information first-hand, instead of filtered through what your mom thinks the doctor said and what she thinks you want to hear, her treatment plan might be much more clear, and you could ask your own questions. Your mom might even appreciate having somebody who keeps track of details. The flipside is that you have to respect her opinions and decisions about her own care.

You know your mom better than anyone, and a lot depends on your relationship with her. If you can work as a team, you might both find the going easier.

I should also mention that if your mom fills out the appropriate paperwork, she can give you permission to talk to her doctor directly, which you could then do by phone or in person, even if you don't go to her appointments.

[larry gard]

Anna,

Sorry to learn of your mother's condition. Although each MDS case is different, I'll pass along my experience with Vidaza in case it may be of help. You can bring up my threads by scrolling down to page 2 and then open the thread entitled "Vidaza & Thalidomide Combination Therapy." Scroll down to the latest thread entry 0n 6/17/08 - other updates were on 12/4/06 and 6/13/07. Also go to the "Tell Your Story" Section and on pg 3 you will find "Larry Gard's Background."

I restarted Vidaza injections in each arm on 3/17/08 (5day/28day cycle)having been off it since 4/1/07. In between, I was on Thalidomide. On 3/17/08 counts were: WBC 0.7 RBC 2.64 Hgb 10.0 Hct 29.9 Plt 234 ANC (too low to register). To prevent nausea, I take an Anzemet Tablet (100mg) prior to treatment.

At the start of my 8th cycle of Vidaza on 10/6/08 counts were: WBC 0.5 RBC 2.68 Hgb 10.2 Hct 30.4 Plt 173 ANC (too low to register).

My counts jump around and it is my understanding that it takes a few cycles of Vidaza before good results are seen. Good luck to your mother!

larry gard, male, age 79, Cincinnati, OH

[agonzalez]

Hi! Anna

As Neil had mentioned, if you can maybe go with her to her next appointment. Parents normally don't want their kids to worry so they don't say much when they are sick. I know because my father is the same way. But I told him I wanted to go to support him. Unfortunately I can't go to all his appointments due to work. But when ever I go I do ask his doctors how he is doing. My father is hard of hearing so I can get away with asking the doctors a whole alot of questions. At first the doctors didn't want to tell me much, but I'm extremely persistant . So his doctors have been pretty cool about answering my questions and giving me an update. It also helps in doing research online. That's how I found this site. People on here have been very helpful.

I wish your mom the best.