Temodar experiences

Posted By
5/12/2014 4:51am
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Replies: 33

Has anyone taken the chemo temodar? I am specifically taking it via infusion for 5 days ( but I kno you can also take it orally) with a regular dose of ipi and 10 days of full brain radiation. Apparently temodar can get to the brain so they decided to add it to my treatment because of my situation. 

Recently they found leptomeningeal disease in my brain, so basically there is melanoma in the tissue surrounding and protecting my brain and spinal chord.hasnt gotten to the spinal fluid yet which is good, but they did find two small lesions on the bone of my lower lumbar spine :( it's pretty darn serious and I was kicked out of the PD-1 trial I was to start the next week.

So plan B is just trying to be aggressive, hense my agreement to do chemo. I thought I'd be able to skip that stuff, but you can't always get what you want. I've done 4 out on5 infusions so far and haven't noticed many changes, but I kno that side effects often take time to kick in.

i really dontknow what to expect and am not knowledgeable about chemo (temodar especially) and how to take care of myself while on it. My doctors have not been very informative on the subjuct. When they handed me a mask the other day just to walk outside I was very surprised and when I got to see my 2 year old niece 6felt scared to touch or to hold her.

will I lose my hair? When?

i feel ignorant, which I try to avoid when it comes to my health.

Anyone experienced this particular drug and want share some knowledge with me?

.

Thanks for listening

H

Hannah Copeland

JerryfromFauq - (5/17/2014 - 6:08pm)

Got the Death Rates from reading the IL-2 and PD-1 clinical trial reports.  20 to 23% of across the board melanoma patients did have a POSITIVE response to IL-2 in the majority of studies.  The lowest response rate I have seen in any study is 16%.  I and the others have not tried to force anyone into any treatment.  We have only told what our and our friends experiences have been.   We believe that people should know of all options and not be scared off by people that were not elgible for treatments they wanted, but were not elgible for, and so try to prevent others from learning ALL the options that are available.  Don't know what your problem with Dr. Pappa is, but many people are still alive due to having him as their Oncologist. 

   We are not afraid to say who we are  and what our opinmions are,  I do not know where you pull your numbers from but have not seen them in any Peer Reviewed Journal articles.

 

I'm me, not a statistic. Praying to not be one for years yet.

OK people, why all the criticism of each other? This is suppose to be SUPPORT!! 

Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.

If you are BRAF/MEK POSITIVE, you have a few more treatment options.

There is no clear, concise evidence that PD-1 is effective on Brain mets.

My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi. 

We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!

 

Keep praying for a miracle, for the doctors to find a CURE for this awful disease.

Best of luck to everyone. Prayers.

Virginia Washburn

JerryfromFauq - (5/15/2014 - 10:11pm)

I'm me, not a statistic. Praying to not be one for years yet.

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