› Forums › General Melanoma Community › Treatment Options for Stage 4
- This topic has 18 replies, 6 voices, and was last updated 11 years, 2 months ago by
DonJ.
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- February 15, 2013 at 1:45 am
Hello all.
Aftger countless hour and countless tears, insurance still refuses to pay for Zelboraf for my husband, soley because he is BRAF V600R instead of BRAF V600E. I now have to let this go, at least for a little while, to concentrate on fighting his disease and not the insurance company. I would however love to know how many of you out there are NOT BRAF V600E and still got the Zelboraf? Are other insurance companies paying?
Hello all.
Aftger countless hour and countless tears, insurance still refuses to pay for Zelboraf for my husband, soley because he is BRAF V600R instead of BRAF V600E. I now have to let this go, at least for a little while, to concentrate on fighting his disease and not the insurance company. I would however love to know how many of you out there are NOT BRAF V600E and still got the Zelboraf? Are other insurance companies paying?
Back to Dana Farber tomorrow (Friday 2/15) to start Yervoy/IPI. Side effeccts are scary. Prayers that Don responds to Ipi are more than welcome!
What else should we be thinking about in terms of treatments? We have put our trust in Dr. Ibrahim at Dana Farber, but I need to know about alternatives to ask her about.
Thank you all for your knowledge, help, support, and love.
Janet
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- February 15, 2013 at 8:48 am
Hi Janet,
So sorry your having to deal with all this. I am on zelboraf but wasn’t told there were different brafs, braf positive I thought was braf. Anyway, ipi has tolerable side effects from what I understand. I will be doing ipi in a couple months. Zelboraf is also tolerable, but there’s a new braf inhibitorcoming out dabrafenib (spelling?) This is due to be aapproved but is in trials. Have u looked into trials?
All my best,
Denise -
- February 15, 2013 at 8:48 am
Hi Janet,
So sorry your having to deal with all this. I am on zelboraf but wasn’t told there were different brafs, braf positive I thought was braf. Anyway, ipi has tolerable side effects from what I understand. I will be doing ipi in a couple months. Zelboraf is also tolerable, but there’s a new braf inhibitorcoming out dabrafenib (spelling?) This is due to be aapproved but is in trials. Have u looked into trials?
All my best,
Denise -
- February 15, 2013 at 8:48 am
Hi Janet,
So sorry your having to deal with all this. I am on zelboraf but wasn’t told there were different brafs, braf positive I thought was braf. Anyway, ipi has tolerable side effects from what I understand. I will be doing ipi in a couple months. Zelboraf is also tolerable, but there’s a new braf inhibitorcoming out dabrafenib (spelling?) This is due to be aapproved but is in trials. Have u looked into trials?
All my best,
Denise -
- February 15, 2013 at 1:01 pm
Hello Janet,
My husband has been on Ipi (Yervoy) Clinical Trial since March 2011 and did well with only a few side effects that were very tolerable. And it worked for him and he is NED (no evidence of disease for 6 months now). He had metastisis to the lungs, liver, and an unresectable lesion on the cervical spine at the C1 C2 level that would have left him paralyzed if they had operated on it. He also had some sub q's and we literally watched them shrink away in a short amound of time. You can read more under is profile.
See if there are any clinical trials then you don't have to pay for the medications the drug companies do.
Good luck to your husband and I hope you get something worked out quickly.
Judy (loving wife of Gene Stage IV and now NED)
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- February 19, 2013 at 3:21 pm
Here is a link to the many trials available. Most will not be pertinent, but you may find one that looks encouraging.
http://www.clinicaltrials.gov/ct2/results?term=melanoma
Keep the faith and never give up hope. I know this is not the forum but after reading many messages it brings back so many memories of my Daughter, Amanda and her four year battle. It helps me to share her memories:
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- February 19, 2013 at 3:21 pm
Here is a link to the many trials available. Most will not be pertinent, but you may find one that looks encouraging.
http://www.clinicaltrials.gov/ct2/results?term=melanoma
Keep the faith and never give up hope. I know this is not the forum but after reading many messages it brings back so many memories of my Daughter, Amanda and her four year battle. It helps me to share her memories:
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- February 19, 2013 at 3:21 pm
Here is a link to the many trials available. Most will not be pertinent, but you may find one that looks encouraging.
http://www.clinicaltrials.gov/ct2/results?term=melanoma
Keep the faith and never give up hope. I know this is not the forum but after reading many messages it brings back so many memories of my Daughter, Amanda and her four year battle. It helps me to share her memories:
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- February 15, 2013 at 1:01 pm
Hello Janet,
My husband has been on Ipi (Yervoy) Clinical Trial since March 2011 and did well with only a few side effects that were very tolerable. And it worked for him and he is NED (no evidence of disease for 6 months now). He had metastisis to the lungs, liver, and an unresectable lesion on the cervical spine at the C1 C2 level that would have left him paralyzed if they had operated on it. He also had some sub q's and we literally watched them shrink away in a short amound of time. You can read more under is profile.
See if there are any clinical trials then you don't have to pay for the medications the drug companies do.
Good luck to your husband and I hope you get something worked out quickly.
Judy (loving wife of Gene Stage IV and now NED)
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- February 15, 2013 at 1:01 pm
Hello Janet,
My husband has been on Ipi (Yervoy) Clinical Trial since March 2011 and did well with only a few side effects that were very tolerable. And it worked for him and he is NED (no evidence of disease for 6 months now). He had metastisis to the lungs, liver, and an unresectable lesion on the cervical spine at the C1 C2 level that would have left him paralyzed if they had operated on it. He also had some sub q's and we literally watched them shrink away in a short amound of time. You can read more under is profile.
See if there are any clinical trials then you don't have to pay for the medications the drug companies do.
Good luck to your husband and I hope you get something worked out quickly.
Judy (loving wife of Gene Stage IV and now NED)
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- February 15, 2013 at 2:09 pm
Ipi unleashes your immune system….With responses that vary widely. For me it is all about intense itching (which I’ve learned to take as a good sign– that the drug is active and working), and joint pain ( which has some tolerable mobility issue associated with it). Also, I reached a point during my treatment where my immune system became a little too aggressive and needed to have the brakes applied (steroid). Your blood work is very important so that the immune response can be monitored…..It has been worth it though– The Ipi has been effective at shrinking my tumors and for me it’s been good way to go. I am Braf positive…. And think of Z as a treatment option in the wings.good luck with your treatment.
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- February 16, 2013 at 1:55 am
So sorry for your situation with the insurance co. Just makes me furious! I am BRAF positive and am on GSK. Drug trial of BRAF/MEK.
Very minor side effects and major tumor shrinkage. This drug has had a wonderful response.
The drug is slated to be approved 2013 , supposedly in this first quarter. PLEASE PLEASE
ask your doctor about this drug and see if there are any more trials. Also I changed my nutrition which I researched was very important, no sugar, preservatives, white flour. Lots of organic fruit and vegetables. Heavy on spices of turmeric, ginger, garlic and use lots of mushrooms. Drink carot juice as well. Keep the faith and stay close to G-D. You will be my prayers -
- February 16, 2013 at 1:55 am
So sorry for your situation with the insurance co. Just makes me furious! I am BRAF positive and am on GSK. Drug trial of BRAF/MEK.
Very minor side effects and major tumor shrinkage. This drug has had a wonderful response.
The drug is slated to be approved 2013 , supposedly in this first quarter. PLEASE PLEASE
ask your doctor about this drug and see if there are any more trials. Also I changed my nutrition which I researched was very important, no sugar, preservatives, white flour. Lots of organic fruit and vegetables. Heavy on spices of turmeric, ginger, garlic and use lots of mushrooms. Drink carot juice as well. Keep the faith and stay close to G-D. You will be my prayers -
- February 16, 2013 at 1:55 am
So sorry for your situation with the insurance co. Just makes me furious! I am BRAF positive and am on GSK. Drug trial of BRAF/MEK.
Very minor side effects and major tumor shrinkage. This drug has had a wonderful response.
The drug is slated to be approved 2013 , supposedly in this first quarter. PLEASE PLEASE
ask your doctor about this drug and see if there are any more trials. Also I changed my nutrition which I researched was very important, no sugar, preservatives, white flour. Lots of organic fruit and vegetables. Heavy on spices of turmeric, ginger, garlic and use lots of mushrooms. Drink carot juice as well. Keep the faith and stay close to G-D. You will be my prayers
-
- February 15, 2013 at 2:09 pm
Ipi unleashes your immune system….With responses that vary widely. For me it is all about intense itching (which I’ve learned to take as a good sign– that the drug is active and working), and joint pain ( which has some tolerable mobility issue associated with it). Also, I reached a point during my treatment where my immune system became a little too aggressive and needed to have the brakes applied (steroid). Your blood work is very important so that the immune response can be monitored…..It has been worth it though– The Ipi has been effective at shrinking my tumors and for me it’s been good way to go. I am Braf positive…. And think of Z as a treatment option in the wings.good luck with your treatment.
-
- February 15, 2013 at 2:09 pm
Ipi unleashes your immune system….With responses that vary widely. For me it is all about intense itching (which I’ve learned to take as a good sign– that the drug is active and working), and joint pain ( which has some tolerable mobility issue associated with it). Also, I reached a point during my treatment where my immune system became a little too aggressive and needed to have the brakes applied (steroid). Your blood work is very important so that the immune response can be monitored…..It has been worth it though– The Ipi has been effective at shrinking my tumors and for me it’s been good way to go. I am Braf positive…. And think of Z as a treatment option in the wings.good luck with your treatment.
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- February 16, 2013 at 2:44 am
Janet, you and Don have been in my prayers. I know how it feels and please don't give up hope. As scary as you hear about the side effects of Ipilimumab ( Yervoy), it is not the same to everyone who gets that treatment by what I have read here.
My husband like Don, is also stage IV. The lesions were in between the spine, lumbar. later, metastases to liver, lungs, skull. We opted radiation for spine and skull and I have heard already about cyberknife at that time but somehow, we just relied on the decision of the experts. Afterwards, He started the Yervoy treatment, in Dec. 2011, (POW, this is an answer to your question also), it was rough on him, fever, nausea , vomitting, joint pains, difficulty breathing, and went to the emergency after the second and third infusion. He was told by the attending Onc during first emergency that he only had two to four months to live. Lesions on liver, lungs and back were bigger. That's when I started reading this site. I learned and our main Onc said also that with Ipi, the cancer could get worse first and that, it may also, take four to six months before it reacts. But despite all that and with the encouragement of many, he finished the treatment at the end of Febraury 2012. Meanwhile, melanomas were popping up on his head and shoulders, the dermatologist was busy plucking them off, three, five, seven every week for four weeks. His scans in March 2012 was not encouraging. But Thank God, he was BRAF V600E positive, we didn't wait for Yervoy to work. He started Zelboraf and is still taking them up to now. Due to all kinds of reaction….he takes 720 mg in the morning and 480mg at night. This is tolerable for him despite being very overfatigue, very low level of energy and suffering bad neuropathy.
Ten months on Z and yes Al, I too pray that it will keep working long term just like you and Dick. Scans coming up at the end of the month and are getting nervous already. December scans showed lungs are clear, healing metastases on back and lesions on liver have shrunk some more. New developments going on according to the brain MRI, Doc said to wait and see after the next scan.
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- February 16, 2013 at 2:44 am
Janet, you and Don have been in my prayers. I know how it feels and please don't give up hope. As scary as you hear about the side effects of Ipilimumab ( Yervoy), it is not the same to everyone who gets that treatment by what I have read here.
My husband like Don, is also stage IV. The lesions were in between the spine, lumbar. later, metastases to liver, lungs, skull. We opted radiation for spine and skull and I have heard already about cyberknife at that time but somehow, we just relied on the decision of the experts. Afterwards, He started the Yervoy treatment, in Dec. 2011, (POW, this is an answer to your question also), it was rough on him, fever, nausea , vomitting, joint pains, difficulty breathing, and went to the emergency after the second and third infusion. He was told by the attending Onc during first emergency that he only had two to four months to live. Lesions on liver, lungs and back were bigger. That's when I started reading this site. I learned and our main Onc said also that with Ipi, the cancer could get worse first and that, it may also, take four to six months before it reacts. But despite all that and with the encouragement of many, he finished the treatment at the end of Febraury 2012. Meanwhile, melanomas were popping up on his head and shoulders, the dermatologist was busy plucking them off, three, five, seven every week for four weeks. His scans in March 2012 was not encouraging. But Thank God, he was BRAF V600E positive, we didn't wait for Yervoy to work. He started Zelboraf and is still taking them up to now. Due to all kinds of reaction….he takes 720 mg in the morning and 480mg at night. This is tolerable for him despite being very overfatigue, very low level of energy and suffering bad neuropathy.
Ten months on Z and yes Al, I too pray that it will keep working long term just like you and Dick. Scans coming up at the end of the month and are getting nervous already. December scans showed lungs are clear, healing metastases on back and lesions on liver have shrunk some more. New developments going on according to the brain MRI, Doc said to wait and see after the next scan.
-
- February 16, 2013 at 2:44 am
Janet, you and Don have been in my prayers. I know how it feels and please don't give up hope. As scary as you hear about the side effects of Ipilimumab ( Yervoy), it is not the same to everyone who gets that treatment by what I have read here.
My husband like Don, is also stage IV. The lesions were in between the spine, lumbar. later, metastases to liver, lungs, skull. We opted radiation for spine and skull and I have heard already about cyberknife at that time but somehow, we just relied on the decision of the experts. Afterwards, He started the Yervoy treatment, in Dec. 2011, (POW, this is an answer to your question also), it was rough on him, fever, nausea , vomitting, joint pains, difficulty breathing, and went to the emergency after the second and third infusion. He was told by the attending Onc during first emergency that he only had two to four months to live. Lesions on liver, lungs and back were bigger. That's when I started reading this site. I learned and our main Onc said also that with Ipi, the cancer could get worse first and that, it may also, take four to six months before it reacts. But despite all that and with the encouragement of many, he finished the treatment at the end of Febraury 2012. Meanwhile, melanomas were popping up on his head and shoulders, the dermatologist was busy plucking them off, three, five, seven every week for four weeks. His scans in March 2012 was not encouraging. But Thank God, he was BRAF V600E positive, we didn't wait for Yervoy to work. He started Zelboraf and is still taking them up to now. Due to all kinds of reaction….he takes 720 mg in the morning and 480mg at night. This is tolerable for him despite being very overfatigue, very low level of energy and suffering bad neuropathy.
Ten months on Z and yes Al, I too pray that it will keep working long term just like you and Dick. Scans coming up at the end of the month and are getting nervous already. December scans showed lungs are clear, healing metastases on back and lesions on liver have shrunk some more. New developments going on according to the brain MRI, Doc said to wait and see after the next scan.
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