Any side effects of Vidaza

[Hunter Bob]

Hello all – My doctor wants to start me on treatments of Vidaza. He said I won’t lose my hair nor be ill, but while reading the booklet they give you at the Dr.’s office, it says nausea, vomiting, etc. are common side effects.

Anyone have an opinion?

Thanks – Hunter Bob

[Mary4Mike]

Bob,

Everyone reacts differently to each drug. My husband responded quite well to Vidaza. He was TX free for a year and had no nausea. His only complaint was severe soreness at the injection sites. They have to rotate the site of injection each day.

Please give a rundown of your complete diagnosis. This may enable us to help and make better suggestions.

[Hunter Bob]

I was diagnosed with RARS-Interm. 1 mid-March this year (2009). RBC, WBC, Platelets all extremely low. ANC now is 1.1 Started immediately on weekly shots of Procrit after diagnosis, additionally B-12 shots each month (these started in January before the diagnosis). Have had a liver biopsy and bone marrow biopsy – that’s when they diagnosed MDS. Had platelets added before each of the 2 procedures. Have had 3 transfusions of blood between mid-March and last week.

So, it’s only been a couple months getting the Procrit shots – Dr. says this is going pretty fast so wants to start on Vidaza treatments. I guess they’re called ’rounds’. Will start the 7-day injections June 1 and go 4-6 ’rounds’ – at least that’s the plan.

I have an appt. with a general surgeon next week – getting a port inserted the end of May so they can do the treatments.

Glad to hear your husband had little nausea; understand everyone is different.

No reactions to Procrit shots – I’ve heard people say they get tired for a day afterwards – I wouldn’t know – I’m tired all the time anyway

Thanks for keeping me going with answers to questions that probably have been asked many times before.

[Hunter Bob]

Was looking at the info. under your signature regarding your husband’s journey – why did they switch to Dacogen and Revlimid after so many rounds with Vidaza?

~Bob

[drinaldi]

hi….my husband was on five rounds of vidaza with no significant side effects (did not have any hair loss — just some mild nausea). unfortunatly, he was transfusion dependent throughout and has been switched to dacogen this month.

he has a combination mds/mpd with very high white counts (now 140,000). vidaza did lower those to 4,000 but brought down his red and platelets (usually down to 10). after the fifth round of vidaza his white spiked to 80,000 so they stopped treatment. it was really easily tolerated and i hope you have the same experience and if it works, it is great.

he is now having major side effects from the dacogen and was hospitalized for five days. this began immediately after his five-day cycle and we still have not reached the nadir point. his original dx was on 11/07 and was able to "watch and wait" for over a year.

[Mary4Mike]

Bob,

He went to Revlimid (no response) and now Dacogen because the Vidaza just stopped working. It actually was that quick.

I am glad to hear you are going to have a port put in. I wish my husband would of had one with the Vidaza. He has one now and it is so much easier with treatments and TXs. It was also a pretty simple procedure having it put in. He finished his 11th round (I think) of Dacogen, the lowest dose yet. It hasn’t made him TX free, but it seems to stretch the time between TXs. He also seems to feel better. We have an appointment at Karmanos (in Detroit) at the transplant center later this month to discuss options.

All the best to you and keep updating us.

Drinaldi,

I am sorry to hear your husband is suffering such a severe nadir. My husband was hospitalized after the first 3 rounds of Dacogen…..the third time with pneumonia. Do you know the dose he was given? My husband has gone from 40mgs. all the way down to 10mgs. at this last round. That was a week ago and he has already been TXd once and his whites are really low, but he feels pretty good! This disease has no rhyme or reason to it and neither do the treatments.

All the best to your husband and to you. Let us know how things go.

Mary

[Hunter Bob]

Hi Mary – I’m almost done with the first round of Vidaza and was so sick the first 2 days – they now start treatment with a ‘bag’ of anti-nausea stuff. I feel OK but blood counts are dropping. They classify that I have pancytopenia – red & white cells are low as well as platelets. During this first round, I have had 2 transfusions in 2 weeks and platelets tomorrow.

Numbers: rbc 2.9, wbc 2.6, platelets 10, hct 26.4, hgb 9.3 (after the transfusion). Getting procrit shots on schedule and will get a shot ‘of something’ for white cells the day after my last treatment in this round – then blood tests every other day during the ‘down time’ between rounds.

Will see how round 2 goes next month …….

Bob

[Mary4Mike]

Hello Bob,

Sorry to hear that Vidaza made you sick. Are they administering it IV or injection? The shot for whites is most likely Neulasta. If they give you more than one shot, it is Nuepogen. Neulasta is time released. Your counts don’t look that bad for a nadir.

All the best with the next round. Where in Michigan are you being treated? We met with the Bone Marrow Transplant team at Karmanos in Detroit a couple of weeks ago. It looks like we are heading down that road this fall.

Keep us up to date with your progress.

Mary

[Hunter Bob]

I’m in Kalamazoo being treated by a Hematologist/Oncologist who came highly recommended. Procrit, B12 and the ‘white blood cell booster’ shots are shots; everything else is by IV through the port in my chest.

Good luck with the next steps for your husband.

Bob

[Miriam]

My husband just started Vidaza yesterday. So far he is feeling alright but we just started.

Blessings and best wishes to you all. My thoughts and prayers are with you,

Miriam

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