Starting Gleevec

[Susan L]

Hi - I am now going to start Gleevec after Vidaza treatment did not work. If anyone has been on it or has info on it - I'd really appreciate it. One of the results on the biopsy showed CD-117 positive. Gleevec is chosen because it is suppose to work specifically well if this is positive. Any info will help. Thank you all.

[Susan L]

Still waiting to hear if insurance will approve the Gleevec. Hopefully they will make a decision this week. Insurance (having or not having) has gotten to be a scarry thing. No way can afford without insurance help.

[Susan L]

Hi everyone - Well it will probably be Revlimid for the next treatment. Will hear final results beginning of next week. Any info on Revlimid appreciated. thanks all

[cheri]

Hi Susan
Well, guess your insurance didn't come thru but sometimes things happen for a reason......hope this is what makes a difference and you can tolerate if very well. I'll be looking forward to learn what you find out about Revlimid patients.......take care, Cheri

[Birgitta-A]

Hi Susan,
Revlimid is an immunmodulating drug similar to Thalidomide but should not give neuropathy like Thalidomide can do.

Here is a study about Revlimid (Lenalidomide) in patients without isolated 5q- chromosome aberration. The results are best in patients with that chromosome aberration - about 70% respond.

In this study they didn’t give the patients Prednisone in tapering dose during the first 3 months - I don't know why because that is supposed to increase response.

As you can see 42% of the 31 low risk patients obtained a red blood cell response according to international criteria.
http://ash.confex.com/ash/2010/webpr...aper27957.html
Kind regards
Birgitta-A
71 yo, transfusion dependent since dx 2006 but no transfusions after 3 months treatment with Thalidomide Sept 2010.

[Susan L]

Thank you both for the reply. Insurance actually is making a better decesion as it looks like this is the better choice. Very expensive - dont know what is going to happen there yet. (co-pay amount) Birgitta thanks for the read. I will know more details next week when final report is in. Hang in there ladies.

[Susan L]

Ok - Now I am not approved for the Revlimid, wasnt approved for the Gleevec - had Dacogen - didnt work, had Vidaza - didnt work - Now I have nothing and nothing seems to be in a hurry now. I am truly confused and depressed. I dont understand - I am RAEB-2 on my reports but now I dont seem to require anything - very confusing to me. Any suggestions ??

[cheri]

Hi Susan--
What happened?
Have you tried any of the pharm companies who will pay for the medicine if your insurance won't? Have you tried your doctor's office/hospital social worker to intervene? Seems wrong that they won't pay for anything...
I hate to say it but it seems true--nobody cares if you live accept your family, friends and loved ones!
They reduced my Vidaza dosage, from 7 days to 5, because Dr and Hosp nurses don't want to work weekends!

How are you feeling and how are your #'s....?
I'll check in some of my books to see if there are any fundiing sites you can contact......
Hang in there.....

[cheri]

Hi Susan

Here's some information--check these out:

1-www.revassistonline.com; www.revlimid.com

Revassist Program: 1-888-423-5436 Mon Fri 8-8 EST Sat 9-3 EST

2-Patient Advocate Foundation 1 800 532 5274
Copay assist for pharm products to the insured

3-www.pparx.org Public and Private assistance/pharm companies

There you go....it's a start....not sure if it will lead to anything, but...
Please let me know if you get any positive feedback from these companies so that I may update my resource list....hope something good comes from it!

[Chirley]

Hello Susan,

Sorry to hear about your insurance issues.

I'm sorry if I have missed some other posts, but what about a transplant before the disease progresses to AML?

In MHO it seems odd to "watch and wait" when you have high risk disease and you are young enough for transplant.

I wish you all the best.

[Birgitta-A]

Hi Susan,
As far as I understand you live in Georgia. If you look at clin trials gov for trials where you live you will find some that look OK for example nr 1, nr 2 and nr 16 (chemo and SCT).
http://clinicaltrials.gov/ct2/result...recr=Open&pg=2
Kind regards
Birgitta-A

[Susan L]

Thank you all for your replies and suggestions. I am going back again to the doc tomorrow and we need to discuss somethings. I am going to check into the clinical trials here in Ga. Atlanta is about 2 hrs away and I should be able to get help there. I've got more questions for my doc and now feel there is something else out there to help with the suggestions you all gave. Its too easy to get caught up in all this drama and feel helpless when you are only listening to one side of it. I needed the extra push with info and the trials ( I do not know why he swayed me away from them) but I feel better - thank you again.

[cheri]

Atta Girl! Glad to hear you got your fight back! There's always another doctor--there's only one of you! Good luck and keep us posted!