@jenm
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- September 17, 2010 at 9:02 pm
Hi Mark,
I am stage 4 with disease in the brain and left breast. I had gamma knife to the brain 7/8 and started temodar, vinblastin and cisplatnium on 6/31. I had a PET/CT scan before chemotherapy started and had an SUV uptake of 8 in the breast area. I completed 3 cycles of chemo and by the third chemotherapy cycle I had a very bad time with nausea/vomiting. Docs were concerned thinkining it might be disease rather than the chemotherapy related (b/c the nausea/vomiting started before the chemotherapy…during my “good week.”). So had another PETCT after 3 cycles and the SUV uptake went down to 3. It’s an almost partial response, I am also on Nexavar/Sorafenib (poor man’s BRAF inhibitor) which I started 7/30.But I am stopping the cisplatnium & vinblastine….cannot tolerate it…too much nausea + vomiting+ fatigue. I am down to 98 pounds. My doc really wants me to be able tolerate temodar + nexavar…..thinks it might keep me stable but for how long? That’s the million dollar question. We think the source of the nausea+vomiting in the 3rd cycle was the nexavar so perhaps a reduced dose will still work.
My doc always said that eventually everyone fails this chemotherapy (cisplatnium+vinblastine) regimen. But there is always a sprinkling of
people who get long term benefit. I know by your post that you are looking for them.So I don’t have a very long response rate at all….too early to tell yet.
But I shared my story anyway….hope it helped.All the best to you,
Jen -
- September 17, 2010 at 9:02 pm
Hi Mark,
I am stage 4 with disease in the brain and left breast. I had gamma knife to the brain 7/8 and started temodar, vinblastin and cisplatnium on 6/31. I had a PET/CT scan before chemotherapy started and had an SUV uptake of 8 in the breast area. I completed 3 cycles of chemo and by the third chemotherapy cycle I had a very bad time with nausea/vomiting. Docs were concerned thinkining it might be disease rather than the chemotherapy related (b/c the nausea/vomiting started before the chemotherapy…during my “good week.”). So had another PETCT after 3 cycles and the SUV uptake went down to 3. It’s an almost partial response, I am also on Nexavar/Sorafenib (poor man’s BRAF inhibitor) which I started 7/30.But I am stopping the cisplatnium & vinblastine….cannot tolerate it…too much nausea + vomiting+ fatigue. I am down to 98 pounds. My doc really wants me to be able tolerate temodar + nexavar…..thinks it might keep me stable but for how long? That’s the million dollar question. We think the source of the nausea+vomiting in the 3rd cycle was the nexavar so perhaps a reduced dose will still work.
My doc always said that eventually everyone fails this chemotherapy (cisplatnium+vinblastine) regimen. But there is always a sprinkling of
people who get long term benefit. I know by your post that you are looking for them.So I don’t have a very long response rate at all….too early to tell yet.
But I shared my story anyway….hope it helped.All the best to you,
Jen -
- September 15, 2010 at 9:07 pm
Sharon,
May you feel God, Jesus and the holy spirit tenderly holding you. May you feel their warmth and safekeeping.Thank you for always responding even when you were going through all so much of your own battle with this disease. You were always one of the first people to respond, especially after a “newbie” would post.
Thank you for your fighting spirit..it makes me want to step up and fight harder. Thank you for all the hope that each of your posts provided.
Love,
Jen -
- September 15, 2010 at 9:07 pm
Sharon,
May you feel God, Jesus and the holy spirit tenderly holding you. May you feel their warmth and safekeeping.Thank you for always responding even when you were going through all so much of your own battle with this disease. You were always one of the first people to respond, especially after a “newbie” would post.
Thank you for your fighting spirit..it makes me want to step up and fight harder. Thank you for all the hope that each of your posts provided.
Love,
Jen -
- September 15, 2010 at 8:40 pm
Hi Amy,
How about the drug Nexavar/Sorafenib? It is one of the early BRAF inhibitors that was developed years back. My doc calls it the “poor man’s” inhibitor. I believe it also has some anti angiogenesis tumor blood vessel properties.I tested BRAF positive as well but was not eligible for the BRAF trial that I was considering because I developed brain mets. My med onc has someone on Nexavar for over a year now with stable disease. So we are currently giving that a try. Major complaint-nausea & vomiting.
From what I have learned from others on this board Nexavar trials for melanoma were stopped during phase 3 b/c they failed to be working for a lot of people but it did work for some. It is currently approved for kidney and liver cancer. You would have to get it off label. My insurance first said no but my doc appealed the decision and I was approved for 6 months.
Of course, getting the actual BRAF inhibitor that worked for you would be the ideal situation. Have you heard of CTEP? Cancer Therapy Evaluation Program. I have heard they can be instrumental in getting access to research drugs on a case by case basis. It must be physician driven and he/she makes the application on your behalf and then it is sent to CTEP who will appeal to the drug company for approval/permission for your doctor to treat just you. I really don’t know all the rules and regulations. It could be that it’s just for research drugs that are really close to approval (like ipi) and not for something like your BRAF inhibitor which is still very much in phase III trials.
Sorry if I have gone on and on. I’m sure your doctor or research nurse will know right off the bat whether CTEP is an appropriate option.
Good luck Amy and I will be praying for you.
