Vidaza after Dacogen [Archive]

Susan L

Mon Aug 30, 2010, 09:54 AM

Starting Vidaza today after problems with Dacogen and wondering what type of side effects anyone has experienced with Vidaza. Good effects also.

Birgitta-A

Mon Aug 30, 2010, 03:12 PM

Hi Susan,
I have not been treated with Vidaza but read a lot about that drug. It is considered to be the best drug for most MDS patients - a little more than 50% are responding. As you have understood low counts and nausea are common adverse reactions. Vidaza like Dacogen is evaluated after 6 months because it usually takes several cycles before the drugs have effect on the bone marrow.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low WBCs, Thalidomide and Prednisone for bone marrow fibrosis, asymptomatic

Susan L

Mon Aug 30, 2010, 08:59 PM

Thank you for the quick response. I am hoping it will do the trick. I can handle the low counts and nausea. The problem with the dacogen was that I got to a point where anytime I exerted myself I could not breath. I also increased a bit in my blasts and chromosome abnormalities. Thank you again for replying. Continue to do good yourself.

Debbie W

Mon Aug 30, 2010, 09:03 PM

New thread and new wishes for successful treatment!

:)

Susan L

Tue Aug 31, 2010, 08:15 AM

Thank you - 1st day was ok - had a problem w/insurance for awhile but all ended up ok. (errr) Abit nauseated this morning but it'll be ok. Good luck w/Mike's biopsy - it is today I think? Have a good day and we all will strive to make things work.

Debbie W

Fri Sep 3, 2010, 06:07 PM

I'll be sending you positive thoughts next week as you start the bottoming process. Enjoy your weekend :)

Kind regards,

Debbie

Susan L

Fri Sep 3, 2010, 07:55 PM

Thank you and I will be keeping my thoughts on you both getting ready for the BMT. I finished my first week and am certainly hoping it will be working. I am keeping my fingers crossed. I took Monday off so this will be a long weekend and with the weather planning on being alittle cooler, I am hoping to take care of some end of the season chores out dooors. I hope you both get some together time while you are getting ready for the BMT. I am sending hugs and best wishes your way. Susan

Debbie W

Thu Sep 16, 2010, 06:32 PM

Responding from the older Dacogen thread in your newer thread.

So happy that you continue to fell better with the Vidaza, before you know it the next cycle will be here again.

Just trying to get things ready around the house, the latest BMB showed a slight decrease in the blasts from 4% to 2%, I'm mainly thankful that they did not show an increase! His sister will be his donor. Mike is CMV negative and although the local lab result for his brother was also negative, the test at Sloan came back positive, so they are going with his sister.

Continue to feel well and stay in touch,
Debbie

Susan L

Fri Sep 17, 2010, 06:42 AM

Good morning - I too am very happy w/the Vidaza so far. I am not so tired and I am making it thru my first whole week at work since May! That is a mile stone. I do get tired but not so bad, and I have cracks around my mouth for some reason - but I can deal with this.

Its good to hear the blasts went down and not up. Its also great that Mike had someone else to fill in as the donor. That really is something huge having two matches. I know you both are getting nervous, but try to stay calm. Its hard I am sure. You have alot of people routing for you both. Take care.. Susan

Debbie W

Fri Sep 17, 2010, 07:35 PM

That is quite an achievement making it through an entire week since May. Glad you can manage the problems, but feel able to deal with them.

They chose his sister because they had confirmed results she was also CMV negative, as is Mike, and there were conflicting lab reports for his brother on the CMV tests. He is very fortunate to have a large family and a couple of matches.

Guess remaining calm does not include tearing things apart, but all windows, curtains, drapes have been washed (or taken outside for a good beating) now I have to get things back together before we leave on Monday. Regular cleaning can be done later, but wanted to take advantage of the weather.

Have a great weekend!

Debbie

Susan L

Sat Sep 18, 2010, 10:49 AM

Hi There ! Yep I am pretty happy and encouraged that I made the whole week. Felt like my old self again!! I sure hope the Vidaza is the cause, seems weird after only one treatment thou. I had to chuckle alittle regarding your early spring cleaning bit - I seem to do that when I am deep in thought about a situation, that nervous energy just explodes. You most certainly have alot going on - but like someone else said, it sure will be bliss when its over and you have your hubby safe and healthy. I know you wont be able to write in the beginning but I will be wishing and praying for all success. I am sure you are packing snack items for yourself too, cards, note paper, toilet articles etc.... take care. Dont exhaust yourself too much. Susan

Debbie W

Wed Sep 22, 2010, 10:14 PM

Still feeling OK, I sure hope so! That nervous energy propelled me to get some things ready beforehand.

Not much new, settling into another room for the next month. More cards, backgammon, puzzles and some exercise in the room.

Be well!!!
Debbie

Susan L

Thu Sep 23, 2010, 06:42 AM

Good morning - Been thinking about you both. Boring I am sure but the outcome of all of this will be so grand!! I am actually feeling better, almost like my old self. (It is kindof scarry - this dang disease.) Hoping things continue to be good. Best wishes to you both. Hang in there!! I know it has to get so frustrating --

Debbie W

Sat Oct 2, 2010, 12:34 AM

Susan L

Sat Oct 2, 2010, 06:53 AM

This was the second week of Vidaza??? Hope all is going well for you and more importantly that the Vidaza is working.

Things moving quickly here, transplant was tonight around 5 and as everyone has said it is rather anti-climatic, all going well.

Hugs,
Debbie

No this was my second round of treatment. (Every 3 weeks) So far it is going well. I will be having another biopsy next month to see if this is working. I seen your post that it only took 15 minutes. That was fast, I hope you are some rest too! Take care

Debbie W

Sun Oct 3, 2010, 12:32 AM

I meant second round of treatment and glad things are still going well. Just as a matter of interest there is woman a few rooms down from my husband who had blasts just over 20% when she was diagnosed. She did the same original trial my husband did (Dacogen and Tretinoin) but with much better results, after four rounds her blasts were reduced to the low single digits and she had her transplant on 9/30. Wish there was some way to tell in advance how our bodies would handles certain treatments.

Susan L

Sun Oct 3, 2010, 07:45 AM

Hi - It would be nice to know what treatment would work on certain people. If only - I have a really good feeling about this treatment. I sure hope it is working, Dr said if not I would be put on another treatment (?) and be put on a transplant list. I am happy that Mike is doing well thus far, it is so hard on his body I am sure. Hope he is getting some nourishment now. Take care

Debbie W

Sun Oct 3, 2010, 11:18 PM

Susan L

Mon Oct 4, 2010, 05:27 PM

I keep on knocking on wood and do not want to jinx anything, but so far so good. He is back to ordering something to eat three times a day and today added afternoon exercises. Friday he is scheduled to start Neupogen shots to help his WBC, so hoping this week passes quickly.

I'll be thinking of you this week during your potential down week after treatment last week - hoping that it goes quickly for both of you.

:)

Hi - Sounds like Mike is making good strides. Fantastic - He is going to lick this thing yet!! Keep your spirits up too. I am keeping my fingers crossed hoping all goes well with myself. Thank you.

Debbie W

Wed Oct 6, 2010, 01:14 AM

Still OK, hope you are well!

Hugs,
Debbie

Susan L

Wed Oct 6, 2010, 04:58 PM

Still OK, hope you are well!

Hugs,
Debbie

Hi - I am doing ok - alittle more tired than last month but still doing good. I am working full days (alittle hard) but atleast I am doing so. Continue your success story. Best Wishes - Susan

mausmish

Wed Oct 6, 2010, 05:08 PM

I'm glad the Vidaza is working out better for you than the Dacogen. I'm in the midst of my 10th cycle.

Susan L

Thu Oct 7, 2010, 09:38 AM

Thank you - Have you had any side effects? I am so happy it isnt as bad as the other on me. That was getting pretty rough. Good luck in your donor search.

mausmish

Thu Oct 7, 2010, 11:50 AM

Thanks. I haven't had any bad side effects. Each month is slightly different. I had a fine rash all over for a couple of months. My injection sites in my stomach always get inflamed but they look worse than they feel. They dry and peel about a week later. I take anti-nausea med an hour before I get the shots and have had no nausea or appetite problems. I get a bit constipated by the end of the week but stool softeners take care of that. I'm a bit more tired than usual mid-week. Sometimes my joints are a little achy and my gums slightly tender. All in all, it's very easy and I'm very grateful that it works so well.

Susan L

Sat Oct 9, 2010, 09:02 AM

Hi - I wonder what the difference is between getting the IV 5 days off 21 and the injections? I get the IV. It is so much better than the dacogen. I get tired, no appetite problems to speak of - but the constipation is really bad. I use softener everyday, and get mouth sores. I am taking a medicine for the sores but not working this month. Still I am sure grateful, I get another BMB in a month to see if it works. Keeping fingers crossed. Have a blessed day.

Chirley

Sat Oct 9, 2010, 07:51 PM

Hi Susan,

I get IV Vidaza 200mgs 7 days with 21 off. When I was on 140mgs I had no side effects to speak of except a little constipation. Now that I'm on a higher dose I do get a little nausea, diarrhoea,fatigue, tender gums and sore muscles. I'm actually on a higher than recommended dose because my disease progressed on the lower dose. I'm keeping my fingers crossed that the increased dose is worth the side effects and am looking forward to my next BMB whenever that may be.

As far as I know we don't have access to Dacogen here.

Regards

Chirley

Susan L

Sat Oct 9, 2010, 09:51 PM

Thanks for your comment. I am not sure what my dose is - I'll have to ask. Same side effects you have, this was my second month and the side effects (this weekend) have hit a bit harder. It'll all be worth it if I get some better results on the BMB. I will let you know when I have it done, next month I believe. I will hope for the best results for you. Take care.

Birgitta-A

Mon Oct 11, 2010, 12:25 PM

Hi Chirley,
You are really lucky when you don't have severe adverse effects with such a high dose of Vidaza! Hope the drug now will have good effect!
Kind regards
Birgitta-A

Debbie W

Tue Oct 12, 2010, 12:09 AM

Hoping that this next week goes well for you and more importantly that it works!

Best regards,
Debbie

Susan L

Tue Oct 12, 2010, 06:16 PM

Hi - Not feeling that great but it'll be ok. Got news from my insurance that they will not be paying for the Aloxi that I have been getting IV prior to the Vidaza. Denying all the way back to May - had a review committee deny it. I called my Doc- they didnt get notice yet - I said I will go without it, but am really concerned what they are going to say about the costs of the Vidaza which I know is alot. I was glad to see on Cambridge that Mike is doing so well. I hope he sets some records!! Take care of yourself.

Neil Cuadra

Tue Oct 12, 2010, 09:22 PM

Hi - Not feeling that great but it'll be ok. Got news from my insurance that they will not be paying for the Aloxi that I have been getting IV prior to the Vidaza. Denying all the way back to May - had a review committee deny it.
I don't know the specifics of your situation, but the general advice I've heard is to appeal denials of coverage if you don't think a substitute will be as effective. When patients pursue appeals, armed with letters from a doctor documenting the need for a medication, a good number of insurance decisions are reportedly reversed.

Susan L

Wed Oct 13, 2010, 08:41 AM

I don't know the specifics of your situation, but the general advice I've heard is to appeal denials of coverage if you don't think a substitute will be as effective. When patients pursue appeals, armed with letters from a doctor documenting the need for a medication, a good number of insurance decisions are reportedly reversed.

Thank you for the advice - I called my Dr last night, they are going to appeal this decision. I was just so upset that it is October and they are denying after approving it since May. I will let you know the decision.

Mary4Mike

Wed Oct 13, 2010, 08:58 AM

Susan,
I agree about appealing this. We had to appeal a denial connected to coverage with Mike's transplant in regard to labs showing chimmerism. I sent a letter from the doctor explaining the importance of these tests. We ultimately won coverage. Don't give up!

Good luck with this. No one should have to suffer nausea associated with chemotherapy!

Susan L

Wed Oct 13, 2010, 01:20 PM

Thank you I wont give up - that is one thing I am very stubburn and a fighter. My doctor called and they are appealing. In the meantime I will get Compazine for the nausea.

cathybee1

Wed Oct 13, 2010, 11:21 PM

I've been lurking here, but wanted to suggest that if the ins. co is still uncooperative after the doctor appeals, you can send a complaint to your state insurance commissioner. The situation you describe seems very wrong. (For Georgia, here's your link: http://www.gainsurance.org/ConsumerService/FileComplaint.aspx

Susan L

Thu Oct 14, 2010, 06:21 PM

Thank you for the suggestion and will see what happens with the appeal. It does seem wrong. I will keep the link to use if needed. I will let you know what happens. Take care

Debbie W

Tue Nov 2, 2010, 12:32 AM

Just checking in to say hi and hope that things in your world are OK. I've lost track of when you start the next round, but thinking it may be this week or next.

Wishing you continued progress,
Debbie

Susan L

Tue Nov 2, 2010, 07:23 AM

I have posted this twice now - hope it goes thru this time. I had my treatment last week, so far so good. My nadir period is 17-28 days after and they are true. Bad mouth sores and tired. errrrrrrr - I have one more treatment Nov 29th week, and then in December will do the biopsy to see where I am. If not working, I will be starting to look for donor. In a way, I wish we could start looking for a donor, I would love to have normal energy for a period of time. I have been following Mikes wonderful success and am so happy for you both. Thanks for asking and take care. Huggs to ya~~

Debbie W

Wed Nov 3, 2010, 06:44 PM

Susan L

Thu Nov 4, 2010, 08:05 AM

Gosh I really did lose track of time! Sorry the Vidaza is causing more problems for you, most of all I hope that it is working. Even if you have not made the decision to have a transplant can some preliminary testing be done? Sorry to read on the other thread that insurance is now giving you a hard time about nausea meds now.

Mike is doing well, napping at the moment :)

Hi - I am hoping that this is working, and I just dont understand why I have so many side effects. The tiredness is the worse thou-and I do expect alot out of myself thou. Next treatment is the 29th and then bmb in Dec. I am happy that Mike is doing so good. Gives alot of hope to us. Take care.