Vidaza treatments

[LorettaV]

I began Vidaza a year ago. After 3 months of Vidaza, I became transfusion independent (I was being tx every 3 wks with red cells.) The first 3 months my counts fluctuated wkly. but have been good since then. My blasts decreased from 10%-16% in 6/05 to 6% blasts in Dec. 2005. In June, blasts were in normal range at 3%, and my onc. actually said, “remission.” I just finished my 10th session of Vidaza and am afraid to quit those shots! Any similar Vidaza response? How long have people stayed on Vidaza?

[SusanJ]

Loretta,

Congratulations to you! I am so happy to hear about your good results with Vidaza. My 73-year old dad was diagnosed with MDS in Jan. of this year and has been struggling with the decision of whether or not to start Vidaza. He has gotten conflicting advice on it from different doctors. Next week we are going to get our 3rd opinion on it, so hopefully then he can make a definite decision. I am always combing the forum for positive results from Vidaza. Please tell me how it has made you feel, give me the good and the bad. My dad has had 3 transfusions this year and all of his counts are low.

Thanks,
Susan

[LorettaV]

Vidaza administration is 7 consecutive days of sub-Q shots, given every 28 days. (My dosage is given in 2 shots a day for 7 days, but I get them at the clinic, so we skip Sat. and Sun.) Sub-Q means given under skin, in fatty tissue, not the muscle. The nurses change sites each day: stomach, thighs, arms. As long as nurse, injects med. slowly it doesn’t hurt. However, the shot sites turn red, swell a little, after shots. I get about 2 inch diameter of reddness (feverish) around shot sites, which are tender to touch for a couple of days. Then, the spots may form tiny blisters and peel like a mini-sunburn. Then, they turn brown like a sunburn might and eventually fade after a month. I met a lady at the AA-MDS Conference last wk., who got all her shots in her stomach! I also heard that Dacogen (as opposed to Vidaza) seemed to do well when there was a Del. 5Q chromosome. I was told by M.D. Anderson, that Vidaza doesn’t always have positive results on the MDS patients. Also, I have communicated with others on Vidaza and it stopped working on them after 6 – 8 sessions.
Vidaza shots are somewhat uncomfortable and will make the patient nauseated so you must be pre-treated with Zofran, or Kytril or some type of anti-nausea meds. Side effects, include diarrhea and constipation, and I usually have both during the 7 days, so I’m afraid to treat one because I’ll usually get the other the next day. Another side effect is fatigue, so I try not to plan to do too much during days 4-7.
Try to find a doctor for your dad that has experience with MDS or at least, communicates with a MDS Center, and keeps up to date on treatments for MDS. The nurses that administer the shots should also be knowledgeable in giving Vidaza shots.

[LorettaV]

Susan, on more Vidaza info., results seen in CBCs, are not seen for 3-4 sessions. The patient’s counts usually fluctuate, up and down, and then, finally level out after 3-4 months.
Sorry, I was so wordy!

[SusanJ]

Thanks Loretta,

Please, I want you to be “wordy”! I need all the advice that I can get! I don’t want my dad to feel bad, but I guess that’s unavoidable, right? He stays so tired all the time now, and I just dread seeing him go down even further if he starts this Vidaza. What do you think would happen if he chooses not to start Vidaza?

[Dennis]

Initially, Vidaza was very good for me. I responded quickly. However, just as suddenly, it stopped working, and now we are going to transplant.

The docs figured I could get as much as two years off the Vidaza, but in the end the incredibly complex cytogenetics won out.

D

[SusanJ]

Thanks Dennis,

What do you think would have happened if you had chosen not to take Vidaza? I wish you all the best on your transplant. I will pray for you daily!

[Dennis]

Susan,

Tough question. The “flavor” of MDS I had was particularly ferocious — multiple genetical abnormalities, all three cell lines involved, and fairly advanced before it was caught. Add to that a hard-to-match marrow type. Without the vidaza, I may not be here to answer you;

While the stuff was working, it was normal life 3 weeks out of four — energy and everything. Like the proveribal little girl with the curl, when it was good it was very good, but when it was not . . .

The main benefit of vidaza was it bought me time before the transplant became manditory. It was always expected we would have to transplant, but they wanted as much time as possible to find the best donor possible.

Had I not had access to the vidaza, I would most likely had started out with red cells every three weeks (where I was when dx’d) and progressed to red cells weekly, plateletes every few days. Probably wouldn’t be here now.

D

[SusanJ]

Thanks Dennis,

My dad also has several abnormal chromosomes and all 3 lines are affected. However, he is not a candidate for a transplant. I guess the decision on whether or not to use Vidaza all boils down to buying time, right? I checked out your CaringBridge site, and you have a lovely family, and a lovely home. A normal life, if it wasn’t for the “MDS” monster, right? Seeing your site and all of the well wishes & prayers for you made me feel guilty for bothering you with my worries. You have a lot to deal with, and I am adding you to the top of my prayer list. I will check on you daily. God bless you!

Susan

[Terri]

Bobs first time around he did the same thing and then after 7 months the blast started increasing the disease roared back. He has now been on the Vidaza as a maintenance since November of 04. We have had some ups and downs. But two TX since Dec of 03. His blast are in a normal range. Just have to deal with keeping his counts at bay.

[Dennis]

Susan,

You’re not bothering me. We’re all in this thing together, and we all do what we can to make it easier on each other.

Normal? For me, “normal” evaporated a year ago — now it’s an adventure of discovering what the “new normal” is day by day.

MDS is definately an evil monster. But remember all the old Universal Monster Movies? The monster always loses.

D

[LorettaV]

Susan, Is your Dad getting transfusions? You asked what would happen if I hadn’t started Vidaza? I would have probably continued to have transfusions, because every 3 wks. I needed 2 units of red cells when the Vidaza finally kicked in. I was dx. RAEB-2, (kind of fast track) and at first I could go 4 wks. before transfusion, then, my counts progressively dropped more quickly. However, unlike Dennis, I only had problems with low hemoglobin. My red cells weren’t lasting.

[LorettaV]

Dennis, Congrats again. I just rediscovered this forum in the last couple of days. I’m looking forward to your transplant and your continued good news you will have to share with us. Remember, my transplant gliche (sp.?) was because of antibodies that got stronger and stronger with ea. pregnancy! So being a lucky male, you don’t need to worry about that. Just check the donor compatability lab results before you get that chemo!

[LorettaV]

Terri, Thanks for Bob’s Vidaza news. I’ve only been on it a year and it’s still working. I try to keep positive, and not think about it not helping. When I was unable tp go through with my transplant in Jan. 06, I decided I wanted to be the first Vidaza “miracle.” I feel blessed with the year it has given me. Question: How long are the intervals between his Vidaza shots? At first, I rcvd. them every 28 days as prescribed, but now we’re stretching it out to every 6-8 wks. I love that extra time!

[SusanJ]

Loretta,

My dad has had 3 transfusions since April. I haven’t really paid much attention to how much time in between transfusions. There is so much to remember and try to learn about this disease. Thank goodness for this forum and all you wonderful people that have helped me!

[Author]

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