Questions for people who've used Vidaza

[bill4872]

I can only tell you our experience with Vidaza. Everyone is different though.

My Mom (80 years, since 2003, REAB-2, maybe AML now) went on Vidaza for about one year, 5 days on, four weeks off. During this time her transfusion frequency went down (from 3 weeks to 5-6 weeks). She stopped Vidaza primarily because of QOL issue (severe hard stools and diarrhea; since then she has had good luck with Miralax for the first problem but decided not to go back to Vidaza). Since stoppng Vidaza, her WBC count has skyrocketed to 50,000 which is why we think it may now be leukemia.

So, from our perspective, getting off Vidaza seemd to have not been a good idea, except for improving the Quality Of Life issue. Which may or may not have been due to Vidaza.

I wish you good luck with your Vidaza treatments which sound like they have been successful so far.

[maueenh]

My dad just completed his 5th round of Vidaza. His doctor will perform at BMB after his 6th round so we do not know the status of blasts but he has been tx free since his 2nd round. The doctor has told us that he will continue to treat him with the Vidaza as long as he responds. He said that he has found that patients that stop have relapsed and it has been more difficult to get them back to initial response levels.

Maureen

[Taffy]

Hello, does anyone have any info on my earlier question, or is this mainly a chat room ? Thank you

[Russ]

Taffy,
MDS and AML are very close. If you have MDS and your bone marrow blasts go over 30% it is considered AML. MDS is also called “smoldering leukemia” and about 20% of MDS patients go into AML. Don’t know where in IN you are but Dr. Larry Cripe at the IU Medical Center in Indy is an excellent doctor. If possible a consultation with him would be advisable. I go to the Michiana Hematology/Oncology in northern IN.
Best wishes and prayers.

[Taffy]

Thanks so much Russ. I am taking care of my aunt and i feel alittle stupid She has awful sores in her mouth and i think the Vidaza affects that she has (Lichens Plantas SP ). a disease that affects the skin bad breakouts sores because of low immune system. Right now she also has problems with her eyes, she can hardly see. She also has fallen and broke her arm and was told she could not have any surgery. She has went from 106 to 98lbs. in the last 2 wks. Should i say something or is this the way this problem takes control?? I really appreciate your reply

[patti]

Taffy,

You can try a rinse for her mouth sores. As long as she’s not allergic to benadryl or maalox try mixing 1 tbls cherry maalox with 1 tsp liquid benadryl. Have her swish it and either swallow (if her sores are deeper down her throat) or spit it out (if the sores are just in the front of her mouth). The benadryl will dull the pain so she can eat and the maalox soothes the membranes.

Russ, our doc said they have changed the RAEB classification to AML. If someone has 20% blasts or greater in the marrow they are now considered AML. Not that I think it matters. Mom has had greater then 30% blasts since diagnosis but is still pretty much the same as she was. Maybe a little more tired. So, I’m not sure the minor change in classification matters (at least it doesn’t to us) but I thought I’d pass on what they told us.

Patti

[Russ]

Patti, I’m getting pretty close to that 20% number. MDS sounds a bit better than AML, just praying that Dacogen will work for me. After my 2nd round my WBCs and PLTs were too low to start the 3rd so will see what another week will do.
Taffy, Will pray for your aunt – hopefully she is close enough to Indy to check with their IU cancer clinic. Recall they brought Lance Armstrong through his before he won the Tour DeFrance.

[Dottieb]

Russ, John just finished his 4th round of dacogen and yes the counts can really drop. The day he started the round his platelets were 203, today 12 days later they are 33. We expect them to drop off a few more points if the cycle behaves as the 3 previous ones. Dottieb

[Russ]

Thanks, Dottie. 2 weeks after the start appears to be the low point (nadir). After the 1st round my numbers recovered 2 weeks after the nadir. I suspect the reason the recovery was slower after the 2nd round might be due to the Neulasta I had which used up my good stem cells to make an excess of WBCs (went up t 50+).

[patti]

Russ,

Didn’t mean to scare you. I think the reason they did the change is because more treatments are available for AML then MDS so it just opens up more treatment doors for the folks with RAEB without having to wait until it’s too far along.

Patti

[Jerry]

Taffy …

Once again, Patti is dispensing medical advice. Please Google Benadryl and look at the side effects and drug interactions and who should NOT take Benadryl. I believe Patti is correct when she advises spitting it out, but wrong to advise you to have your aunt swallow it without checking with your doctor. Just wanting you to be safe.

Here is just a little advice I found.

Do not take diphenhydramine and pseudoephedrine if you have taken a monoamine oxidase inhibitor (MAOI) such as isocarboxazid (Marplan), phenelzine (Nardil), or tranylcypromine (Parnate) in the last 14 days. A very dangerous drug interaction could occur, leading to serious side effects.
• Before taking this medication, tell your doctor if you have
· kidney or liver disease,
· diabetes,
· glaucoma,
· any type of heart disease or high blood pressure,
· thyroid disease,
· emphysema or chronic bronchitis, or
· difficulty urinating or an enlarged prostate.

If you swallow the Benadryl, you are taking it and must be careful.

Jerry

[Jerry]

Taffy …

I forgot one more thing. If your aunt is using Exjade for iron overload, she CANNOT swallow Maalox because it has aluminium in it and is specifically prohibited by Exjade’s manufacturer.

Folks, I know I am being prickly about this. But until Patti produces a medical degree and knows the patient’s history and details of their medical care, then her dosing advice could be potentially life threatening. I, for one, and I know many others are too, am very concerned about the ramifications of her dosing advice.

In this case, if she had said, “ask YOUR doctor about using Maalox and Benadryl to relieve the pain of mouth sores as my MIL does”, I would have had no problem with it.

Jerry

[patti]

Jerry,

Unless you’re the list mom I don’t think you need to respond to every message I post. This forum is intended for the free sharing of information and experiences relating to MDS. If you want to post your google about benadryl so be it, but you don’t need to lambast me in the process.

Would you just lay off? I’m assuming that folks here are intelligent enough to check things out with their doctors without my needing to qualify every word I say (and sometimes I do qualify with that). What I posted about the benadryl and maalox has been posted on this forum before, not just by me (would you like names?), but by a number of others and I don’t remember you ripping them for not telling someone to check with their doctor (they didn’t). I’m giving other people the benefit of the doubt that they are just as intelligent and know not to do something they’ve not looked into either with their doctor or some other source. Unlike you who thinks we ought to treat everybody like idiots that know nothing.

You’ve got a real problem with folks who are interested in doing natural stuff but a worse time with me because I’ll actually answer people’s questions. There are other people on this forum talking natural stuff in the same way and I don’t see you ripping them. Do us all a favor – you stick to your toxic drugs all you like but let those of us who desire something else get the answers we’re looking for. Just because you don’t think CLO (or anything else) doesn’t work or no one should take it because of whatever you googled (all the stuff we read on the web is right after all isn’t it?) doesn’t mean everyone else believes it. People who don’t like to do drugs tend to the think the AMA is full crap. So far – that’s been proven true in our life here. So go with it Jerry – believe all you want in AMA stuff, but leave me and everyone else who asks, alone. We have our own battles with MDS to fight and you seem more concerned with what health remedies are being discussed that you don’t believe in then with the battle we’re fighting in our own lives. You obviously have too much time on your hands. Why don’t you put it to better use? I have really endeavored just to let what you say go but I’ve finally had it. I have my own hands full with this disease and I certainly don’t need your crap on top of it.

Patti

[Jerry]

I will stick with what I said …. you are coming way too close to practicing medicine and are a danger to those who would try some of your methods without checking with their doctors … I never said CLO doesn’t work … I said to check with the doctor first … You are so hypocritical Patti … anti-MD, pro-naturapathic, but did the eminent Dr. Kou prescribe the toxic drug Neupogen and toxic blood transfusions for your MIL? … I would guess not …

Once again, I will say that you have some good ideas … just quit giving dosing instructions and tell people to check your suggestions out with their doctors … you forget how vulnerable people on this forum are … they are grasping for straws … you cannot assume (as you said) that people will go check your suggestions with their doctors …if you remind then to go see their own doctors then you will have no trouble with me and the dozen or so people who wrote me to tell me how much they agreed with me … Remember, that behind your back, this is referred to as “Patti’s bad advice forum” and I am working to change that because I do think you have merit in this forum. (By the way, that was not a term I used, but one that 2 other people used in private e-mails to me).

I would hope that this ends this discussion and hope that your combination of ntural and traditional medicines works for your MIL and that she lives a long time with her MDS.

Jerry

[franm]

Hi California Mom,

Jim is 74 and he was diog. with MDS in 05. He has had 5 sessions of Vidaza and he just had a BMB last Thursday. He should know his Blast numbers on the 31st. We are hoping a praying that the blast go down from the last BMB that he had. They were 20 at that time.

He was getting Vidaza for 7 days and then rest for 3 weeks.

Best of luck.

Fran

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