STOPPING VIDAZA

[diner]

Hi Patti or anyone, I’ve finished my 4 cycles of Vidaza with no sign of it helping. I woke up with my nose bleeding again this morning which means more platelets needed. I have been getting platelets and red cells weekly. My doc is trying to decide if I should try the Revlimid.
I don’t know what to do. I’ve had terrible side effects from the Vidaza (mouth and tongue sores really bad) but I think Revlimid has less side effects. We haven’t been able to get away since last Sept. because of the shots, side effects and transfusions. It’s all so frustrating.

[Neil]

Hi Dee,
Go for the Revlimid!!
Are you considering a 2nd SCT?

[jeanswear]

Go for the Revlimid!

Do NOT go for the trisenox treatments if the docs offer it. All it did was make my mom weaker

[Suzanne]

Dee, I gather you must have the 5Q- chromosome change that is part of the requirements for the apprioved use of Revlimid? If you can get it and find a way to pay for it why not. You can always stop if you have side effects or it doesn’t help. If what you are looking at is still part of a trial things might be easier-just from what I have read on the forum.

[diner]

Thanks everyone for responding to my delima about VIDAZA. I had to have more platelets today. Woke up with nose bleeding (count 3,000). My oncologist really doesn’t want to give my any more shots because I’ve done 4 cycles with no promising hints. We are going to do nothing for a week and then I’ll have another blood test to see where I’m at.
Haven’t decided on REVLIMID yet.

NEIL, No I’m not considering a 2nd SCT. I had so many problems the first time. I don’t think I could survive it.

SUZANNE, My chromosome report says all 20 metaphase cells are missing chromosome 7. Plus 3 cells had an interstital deletion of chromosome 5 long arm and 4 cells had both the chromosome 5 long arm deletion and deletion of
chromosome 12 short arm.

[Suzanne]

Dee, I am sure you are even more of a special case then most of us having already had a SCT plus the fact that your MDS is secondary with chromosome changes. No one knows what will work for any of us. If you have good Dr’s with a lot of experience with MDS about all you can do is liten to what they think might work and make the best decisions you can for yourself. I hope you find a direction you feel as comfortable as possible with.

[diner]

Hi everyone, I E-mailed Dr. Curtin, head of the MDS Dept. at OHSU. He was very sorry that the VIDAZA didn’t help me. He said if nothing happened after 4 cycles, that nothing is going to happen. He said REVLIMID is good for the red cells but is noted for lowering platelets which is my big problem. He wished he had more options for me. He said he’d be glad to talk with my doctor about my situation. Wish I had
some encouraging new. Dee

[Ensnee]

Hi Dee,

I’m so sorry you are having problems, and that you can’t seem to find a treatment that works. I hear you about not being able to get away. I’m hoping to finally get Hans, Martha & me away to visit my brother in Ottawa the beginning of March. I hope he will still be well enough.

Sending healing thoughts,
Esme

[lynette]

Hi Dee,
I’m very sorry to hear about your situation. I would respectfully disagree with the idea of not using Trisenox. First of all, it is presently being investigated for AML. I’m not certain as to whether or not you would fit that category. My Mom who had RAEB-T then AML did have Trisenox. After 2 cycles, she achieved a complete remission. She had very few side effects. She now looks great.(Of course, we don’t know how long this will last). Everyone reacts differently. You and your doctor will best decide what is right for you.
My thoughts and prayers are with you.
Lynette

[patti]

Hi Dee,

I’ve been offline off and on all week. We have seven computers in our house (5 business laptops and two desk tops) and both of MY desktops had hard drives die at the same time. I think it’s a conspiracy! I am sorry to hear the Vidaza didn’t work. Thank you for letting me know. I know it must be discouraging but hang in there. I think going for the revlimid is such an important thing to consider! If you don’t, you’ll always wonder if it would have helped you. The only thing I can think of to help with your platelets is to juice an entire pineapple a day and take 2 tbls of black sesame seeds a day and see if it helps. Both of those are double what I normally tell people but my MIL runs very low platelets all the time (spontaneous bleeding, etc) and I always have her increase these two when she starts bleeding. The only other thing I could think of you could try is the Essiac tea. I just found a place to get it here so mom isn’t on it yet. I’m hoping it will kick her RBC’s but then also help the platlets as a side effect.

My thoughts are with you. Take care.

Patti

[diner]

Lynette & Patti, I just thought I’d check one more time if anyone else responded. You guys are all so great and caring. I’ve been feeling so up and down today and your responses have helped me think there might be something to help me. God bless you both.

[patti]

Dee,

Sometimes just hearing someone elses thoughts can give us some clarity. Take time to look into the other options and don’t say “no” to anything until you’ve been able to think it through and answer whatever questions you have. It’s so hard to do that in the midst of a storm sometimes – but I know you can. I’m glad we could help.

Keep looking up,

patti

[lynette]

Dee,
I do believe that having HOPE is one of the most important things when dealing w/ any illness!!
Lynette

[Sandy L]

Try that pinapple! What do you have to lose? I am sure it has helped Mike. He is now taking the Noni pills so I do not juice as much. Lazy….that’s why.

[Jimbob]

Dee,
Will your doctors or insurance allow you to get seen directly at the OHSU clinic? Working with the patient is a lot different than just reading the chart notes. Options and additional knowledge can help to keep hope.
Jim

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