Glenda, Glenda, Glenda

[Glenda]

Bob, I haven't heard about Gleevec II. I belong to a CML website and nothing has been mentioned about it. There is a new BMS drug for people who resist Gleevec. It is in the trial stage at the moment. I wonder if this is the one you are talking about. One of my major problems is my Cobra insurance ran out today. I do have disability medicare but that's a joke, it doesn't cover any medicines for me at all. I also have a supplement BC/BS. It will be interesting to see what they cover. Gleevec alone cost $5,600 a month. My part with Cobra coverage was $40. I probably will end up writing Novartis, the company that produces Gleevec and see how they can help me. This is really a life/death situation for me. Without the medicine, I die! There is no way we could even start to pay $5,600. My regular doctor said that the patent was probably up with Novartis (5 years) that hopefully another company will start making it and it will be available a lot cheaper to patients. This is one of those things that you have to turn over to the Lord. If I start really worrying about it, it would make me sick! !

Also, the thing with CML, the statistics say only one out of 100,000 people get it. It's a very rare form of leukemia. In my town and surrounding area of about 100,000 people, myself and one other woman have it.

It's weird, I always knew I was different! !

 

[tobagotwo]

I caught sight of an article about "Gleevic II" a couple of months ago, and of course it caught my eye. It wasn't very in-depth at all, so it could indeed have been about the other drug you mentioned, intended for those who are resistant to Gleevic.

It's not a very common disease, but it's around.

A friend of mine named Kim Logan had CML some years ago, before Gleevic came along. She had it for a long time, and she determined she was going to cure it through a bone marrow transplant. It did cure the CML, but she never really recovered her strength. She was a kind, but strong woman (much like yourself), with great enthusiasm and perseverence in life. I greatly miss her.

Maybe this new drug version is your next stepping stone, Glenda. We are all willing you strength through this hard time.

Very best wishes,

 

[Phyllis]

Glenda,
In doing a search, I found that Dan Farber in Boston has a trial for Gleevec. I am sure that there are other large teaching hospitals that have trials too and in that case, I don't believe you would have to pay for the medication in order to be part of the trial. It might be worth checking it out. Here's the article I found:

Research Advances

Treatment with Gleevec and other kinase inhibitors at Dana-Farber

A new class of cancer drugs known as kinase inhibitors, which includes Gleevec, has been a welcome addition to treatment for people with two rare cancers: Chronic Myeloid Leukemia (CML) and the sarcoma known as Gastrointestinal Stromal Tumor (GIST). Unlike standard chemotherapy, kinase inhibitors block a very specific cancer mechanism in cells, and have fewer side effects than chemotherapy. In addition, they are given orally in pill form.

Physicians at Dana-Farber Cancer Institute are prescribing kinase inhibitors for CML patients in certain stages of the disease, and in clinical trials for people with specific types of GIST, high-grade brain tumors, acute myeloid leukemia (AML), kidney cancer, prostate cancer, and neuroendocrine tumors.

Contact Information

For those interested in becoming a patient at Dana-Farber who would like to learn more about the Institute?s use of kinase inhibitors such as Gleevec, please contact the following numbers:

Leukemia
(617) 632-5138

 

[Phyllis]

Glenda,
Here's another link to what's called the "son of Gleevec".

http://www.medpagetoday.com/tb/HematologyOncology/2005AACRMeeting/915

 

[Phyllis]

Glenda,
Still researching- I so do want to help you!
On the national cancer website, there is a long and good article about how to find a clinical trial- you start by asking your oncologist if he knows of one. Here is the link and I hope it will help.

http://www.cancer.gov/clinicaltrials/finding/treatment-trial-guide

Best wishes,
Phyllis

 

[Guest]

You have such a great attitude. It's so amazing what a difference that makes.

AMEN!

That written, thoughts/prayers coming your way, Glenda!


Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72,6,9/'81,7.hobbies.chdQB = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

 

[Glenda]

Thanks for the information on the Gleevec links and clinical trials. I will look into it. You guys are great! I don't know what I would do without you all.

 

[Phyllis]

Glad to help Glenda. Dick lost his sister from CLL when she developed Guillain Barre disease after having a flu shot when she was also having chemo and her immune system was low. This all happened right after Dick had his surgery and was in the first weeks of his recovery. Really tough for his Dad (who was 99 at the time) to lose a daughter and have his son going under major heart surgery at the same time. Where did all those good genes go??? We never got any definite answers, but we suspect that the flu shot might have caused the Guillain Barre. I hope that you get some answers on the clinical trials and we will keep you in our thoughts and prayers.

 

[Superbob]

Best Wishes, Glenda

Best Wishes, Glenda

Glenda, you are precious to everyone who has been here long enough to learn even just a little about you. I just wanted to add that you are most definitely in my thoughts and prayers.

All best wishes,

Rob

(The former BionicBob, aka Blessed Bob after making it through a complicated journey)

 

[Christina L]

Glenda,

Glenda,

Thoughts and prayers are with you as you go through this latest trial. You are an inspiration to all of us.

Christina L.

 

[hensylee]

Glenda, our dear Zazzy was on Gleevec and I think she was into something special that provided the medicine for her. Maybe you could do a search in her name and find her posts. I believe her doctor was instrumental in getting it for her. There is also a cancer support site that she was well known in but I don't recall the name of it.

I believe you will remember Zazzy.

 

[Glenda]

I do remember Zazzy, in fact we are in contact once in a while through e-mail. We have so much in common. We also belong to the same cancer (CML) web-site. I need to contact her. I haven't talked to her in a while. She is such a sweet person.

 

[hensylee]

If you hear from her, Glenda, let us know how she is doing.

 

[Glenda]

Anne, I have heard from Zazzy several times the last couple of days through my e-mail. Zazzy is never one to complain. She has had some stomach problems and has pain in her hip but otherwise is doing pretty good. She has great insurance so she doesn't have a problem getting Gleevec. She is trying to get me some information on going directly through the company that makes Gleevec. She also has been really busy working in her yard and flowers.

 

[hensylee]

Thank you Glenda - she's a real sweetheart. I miss seeing her. Tell her hello from me.