Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Drug Temodar Ups Brain Cancer Survival


http://www.m.webmd.com/a-to-z-guides/ne ... r-survival

Dear Debbie, This is very encouraging news for primary brain cancer patients, but unfortunately there is no data presented regarding the effectiveness of Temodar for ASPS patients with ASPS brain mets. Temodar treatment was recommended and advocated by Brittany's radiation oncologist about 8 years ago to try to prevent continued brain mets from developing, but we refused the treatment because at that time there was no data available documenting the success of Temodar for ASPS, and some of the side effects of the drug including sterility were unacceptable to us given the fact that it had unproven success with ASPS. It would certainly be important to know if there is any documented and/or anecdotal evidence to support the use of Temodar for ASPS patients with brain mets before beginning treatment with it. With special caring thoughts and continued Hope, Bonni

Hi Bonni

This gets us closer

Neurol Med Chir (Tokyo). 2010;50(8):689-93.

Brain metastasis of undifferentiated sarcoma and response to temozolomide treatment. Case report

http://www.ncbi.nlm.nih.gov/pubmed/20805657

Our family feels that with our regiment of temador and SRS them LITT of the 1.3 cm tumor, our 3 tumors were aided in having temador on board as an adjunctive treatment. As for crossing the blood brain barrier , we could not find any documented drugs other than temadore that could be used to destroy the cancer DNA. We had lower SRS treatments compared to Lynette and Jorge with the two right side smaller below 5mm tumors and they are still stable at 1 year later.

Re: Josh from Kansas - Dx Sep 2012
Postby Josh » Sun Mar 01, 2015 4:09 pm

The most recent MRI results are back. The largest tumor is now 1.3cm, but still shows hypervascularity, so we are going with the assumption it is alive and kicking. The procedure we have planned is called "Neuroblate."

The smaller two nodules had actually shrunk by 1mm from the December scan (I want to say now 5mm and 6mm but will have to check), so that is excellent news. There is a suspicious tiny possible area near the other two, but it may be damage from radiation. We will follow up on that on the next scan.

I'm not sure about the Temodar studies. We are hoping there was some value in the molecular profile we did.

* The spot was radiation fall out and is no more

http://www.cureasps.org/forum/viewtopic ... t=90#p7927

Love
Debbie

Dear Debbie, Thank you for sharing this encouraging article about Sarcoma brain mets response to Temodar, and the important anecdotal information regarding Josh's seemingly successful Temodar assisted brain met treatment. This is certainly the kind of information that is needed to help ASPS patients make critical treatment decisions, and which unfortunately was not available to us 8 years ago when we were exploring Temodar. However, in Brittany's case, Temodar was being recommended by her radiation oncologist as a treatment to prevent the development of new brain mets instead of as an adjuvant to treatment to shrink/destroy brain mets as in Josh's case since Gamma Knife had already thankfully been successful in doing that for Brittany's brain mets. Additionally, although you said you could not find any documented drugs other than Temodar that cross the blood brain barrier to destroy the tumor DNA, we think that Cediranib most likely crosses the blood brain barrier to prevent the development of new ASPS brain mets since Brittany has thankfully thus far not had any new brain mets since beginning her Cediranib treatment six and a half years ago despite having several brain mets and continued brain mets development prior to starting Cediranib. Do you and Josh's doctors think that the Temodar has both helped shrink/destroy Josh's existing mets as well as prevent the development of new ones? Is Josh still taking Temodar? Hopefully any other ASPS patients who have experience withTemodar will share their treatment experience and results on this Forum so we can all learn from them. With deepest gratitude for your important thoughtful sharing, and with special caring thoughts, healing wishes for Josh, and continued Hope, Bonni

Hello Bonni

We had 3 months of temador at 5 days of 250 mg of temador following SRS of brain tumors prior to LITT of the biggest left side tumor , to sucessfully put the tumors on our "back burner" of need to address at this time issues to date

Josh is 35 years old and 124lb ish

Love
Debbie

Hello again Debbie,Thank you for the additional Temodar dosage and length of treatment for Josh. I Hope that he is feeling good and doing well with stable disease and continuing shrinking/disappearing brain mets. Depending on his height it sounds like he is quite thin at 124 pounds so Hopefully he will be able to gain and maintain some weight . With additional gratitude for your thoughtful sharing, and with more special caring thoughts, healing wishes for Josh, love, and continued Hope, Bonni

Hi Bonni
1 1/2 inches shy of 6 foot
Down 7lbs from 10 years or so of history

Good night

Love to you and yours
Debbie