Adverse Reaction to Vidaza

[Al's Wife]

Well, our visit to the oncologist today was not a good one. We saw the doctor prior to beginning day 3 of cycle 6 of Vidaza. We discussed the differences in the two bone marrow biopsies and the doctor was upset about the discrepancies. So he is contacting the two labs and having them run the tests again. Evidently they save the marrow for a length of time. He said it could be an error or it could be the Vidaza has wiped out the 8 and created the 3, which he compared to jumping out of the frying pan into the fire.
It was unsettling, to say the least, which seems to be the way things run with MDS and this awful roller coaster ride.
Then when Al went back to begin his chemo, he had a burning in his chest, blurred vision, slurred speech, and his blood pressure went off the charts. They immediately stopped the Vidaza. They gave him some medicine to get his blood pressure down and stabilize him. But it really scared him. The doctor told them to wait about 15 minutes and then try the Vidaza again, which they did, and everything was fine.
We have no idea why after all this time, he had this reaction today. He was, of course, upset after our visit with the doctor, and added to that, he had not eaten anything since early yesterday. Anyway, we've got two more treatments with Vidaza for this week, and hopefully the doctor will have the lab results back, and we can make a determination of where do we go from here.
Has anyone else had an adverse reaction like this from Vidaza? I've read where some have experienced similar reactions from the antinausea medicine but don't remember reading it about Vidaza.

[Greg H]

Linda,
So sorry to hear about that reaction. I can't weigh in other than to wonder if his not having had anything to eat might have had something to do with it. Does he usually not eat much during treatment because of the nausea?
I hope you'll keep us posted on the chromosome re-do. One of the things I've been worried about with Vidaza is that it might mess around with the chromosomes a bit more than one might like.
Good luck with Day 4 & 5. I'll have fingers crossed for Al and you, too.
Greg

[Birgitta-A]

Hi Linda,
Too bad with Al's reaction! As far as I understand chest pain is rather common (16%) but not high blood pressure - some patients get low blood pressure (hypotension) - 7%. http://www.rxlist.com/vidaza-drug.htm
Kind regards
Birgitta-A

[Greg H]

Originally Posted by Al's Wife

We saw the doctor prior to beginning day 3 of cycle 6 of Vidaza. We discussed the differences in the two bone marrow biopsies and the doctor was upset about the discrepancies. So he is contacting the two labs and having them run the tests again. Evidently they save the marrow for a length of time. He said it could be an error or it could be the Vidaza has wiped out the 8 and created the 3, which he compared to jumping out of the frying pan into the fire.

Linda,

Reading about Al's bad reaction to Vidaza I nearly forgot to pick up on this part of your note. It really shows how important it is to be a well-informed, curious patient or caregiver who's not afraid to ask questions. Docs are like anyone else: they can miss stuff.

One of mine missed a whole cytogenetic report from my second BMB and thought my Chromosome 1 abnormality had disappeared. No such luck. She was just unfamiliar with the time lag from her new pathology lab and read the results too soon.

I'm sorry that the kind of excited your Doc got wasn't exactly the good kind of excited. But I'll bet he continues to pay a lot closer attention to Al's reports in the future because he knows you are reading them carefully, too.

Hope things are going smoother toward the end of this course of Vidaza -- and looking forward to hearing about some response to the treatment!

Take care!

Greg

[Al's Wife]

Greg,

Thanks for your supportive words. Not only did Al's regular oncologist miss the discrepancy in the lab reports but also the doctor at Emory. I pointed it out to both of them because (even though I didn't understand what all those crazy numbers meant), I knew that the numbers were different in the two lab reports. I cannot impress upon everyone enough that you have to absolutely be proactive and try to learn as much as you can about your disease and question any and every thing.
Al did not have any problem with his Vidaza today and he has one more treatment tomorrow. We have an appointment for next Wednesday afternoon for him to see the oncologist doctor again, in hopes that the redo of the bone marrow from the two labs will be back. So, needless to say, I am very anxious. I don't do "wait" very well.
Our doctor has a colleague at M. D. Anderson in Houston who he consults with, in addition to the Emory doctor we see. So hopefully we will get some answers and be able to make some informed decisions about further treatment options.
Trying to be a smiling and upbeat caregiver!

[Bambam]

Originally Posted by Al's Wife

Well, our visit to the oncologist today was not a good one. We saw the doctor prior to beginning day 3 of cycle 6 of Vidaza. We discussed the differences in the two bone marrow biopsies and the doctor was upset about the discrepancies. So he is contacting the two labs and having them run the tests again. Evidently they save the marrow for a length of time. He said it could be an error or it could be the Vidaza has wiped out the 8 and created the 3, which he compared to jumping out of the frying pan into the fire.
It was unsettling, to say the least, which seems to be the way things run with MDS and this awful roller coaster ride.
Then when Al went back to begin his chemo, he had a burning in his chest, blurred vision, slurred speech, and his blood pressure went off the charts. They immediately stopped the Vidaza. They gave him some medicine to get his blood pressure down and stabilize him. But it really scared him. The doctor told them to wait about 15 minutes and then try the Vidaza again, which they did, and everything was fine.
We have no idea why after all this time, he had this reaction today. He was, of course, upset after our visit with the doctor, and added to that, he had not eaten anything since early yesterday. Anyway, we've got two more treatments with Vidaza for this week, and hopefully the doctor will have the lab results back, and we can make a determination of where do we go from here.
Has anyone else had an adverse reaction like this from Vidaza? I've read where some have experienced similar reactions from the antinausea medicine but don't remember reading it about Vidaza.

I have just completed Round 4 of Vidaza, on a 7 day on/21 day off schedule each month. I have had intense itching all over my body with each round, but it seems to be intensifying with time. The anti_nausea med, Ondansetron, and Vidaza combine to cause severe constipation. My dose of the former was halved, but still the same effect persists. I'm told it will take 6 rounds before we know if the Vidaza is working. In the meantime, my ANC rarely rises above .5 and my PLTS hover around 20 (my threshold for TRX due to earlier brain bleed.) my stomach looks like a map showing each province a different colour, I itch intensely and I read lots of magazine articles!!!

[bailie]

Best of luck with the Vidaza. I had eight rounds. I controlled any hint of itching with the Gold Bond medicated lotion (green bottle). It worked perfect for me.

We have observed that Vidaza works differently for just about everyone.

[sbk007]

If the injections are really bad ask for the IV. The odeno*/Zofran is constipating to say the least. I was taking 8mg tabs. Try eating some yogurt if you can. It worked for me. It restores the flora that the Vidaza might wipe out..If all else fails there's always Senna or brand name Senokot. Senna stimulates peristalsis. - Good to see you still posting!!!!
All the best!

[Chirley]

Careful of the yoghurt, I was just told to avoid it while neutropenic. Apparently the "good" bacteria may not be so good if they take over. I was also told no probiotic tablets under any circumstances...weird....no one told me this stuff when I was having chemo, only now that I'm considered a medical patient rather than an oncology patient.

I took Claratyne before the Vidaza and had Tropisitron IV for nausea....my doctor ordered regular senna to prevent constipation.

[Cheryl C]

Never heard that about probiotics either, Chirley. I take a capsule once or twice a week because I read somewhere that MDS sufferers need to do that. I haven't experienced any gut problems from doing this.

I just found this on the web, which indicates that probiotics may be beneficial for those on chemo: http://www.cancer.gov/clinicaltrials...ersion=Patient

[Bambam]

Originally Posted by sbk007

If the injections are really bad ask for the IV. The odeno*/Zofran is constipating to say the least. I was taking 8mg tabs. Try eating some yogurt if you can. It worked for me. It restores the flora that the Vidaza might wipe out..If all else fails there's always Senna or brand name Senokot. Senna stimulates peristalsis. - Good to see you still posting!!!!
All the best!

I don't believe IV is an option here. I am taking just 4mg of Zofran and senna and ducosate ...!! Due to gut issues, my Gastro Enterologist recommended ALIGN Probiotic ... And it's amazing! I also have a small amount of lactose free, probiotic yogurt each day. I am neutropenic (0.3) and was told that the bacteria I am taking are beneficial and never harmful. I'm glad to still be posting!

[Cheryl C]

I take the lactose free probiotic too, otherwise I become more prone to sinus problems and colds.

Good on you, Bambam - you are obviously fighting with all your strength.