› Forums › General Melanoma Community › Are there any other options?
- This topic has 27 replies, 6 voices, and was last updated 11 years, 1 month ago by
awillett1991.
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- March 21, 2013 at 8:41 pm
Brief overview of our story.
My wife (33 years old) and a mother of two, was diagnosed with melanoma in April of 2010. The melanoma was in her groin area, a area not exposed to the sun, and she is not a tanning bed person. Had surgery on April 30th, 2010, to remove tumor in left groin, superficial lymph node dissections left groin, 2/3 sentinel were positive for melanoma, 29 lymph nodes removed from groin area at that time. Started Luekine injections for one year.
Brief overview of our story.
My wife (33 years old) and a mother of two, was diagnosed with melanoma in April of 2010. The melanoma was in her groin area, a area not exposed to the sun, and she is not a tanning bed person. Had surgery on April 30th, 2010, to remove tumor in left groin, superficial lymph node dissections left groin, 2/3 sentinel were positive for melanoma, 29 lymph nodes removed from groin area at that time. Started Luekine injections for one year.
Feb 21 2012, reoccurrence in left groin, surface melanoma removed along with smaller tumor underneath it.
April 2010, blockage in pancreas causing issues, whipple procedure done to remove blockage and resumed luekine injections.
July 2012, another melanoma removed. Continuing injections.
October 31st 2012, stomach/back issues, found tumor in bile duct of liver, stint put in place to allow bilirubin to pass, moved on to ZELBORAF (vemurafenib). At this time tumors were in abdomen area as well. Started ZELBORAF on Nov. 9th.
PET scan 3rd of January 2013 were great, almost all cancer was gone.
Late January of 2013, tumors grew throughout abdomen and liver. Started 3 drug chemo therapy treatment January 26th. Drugs were Avastin, Abraxane, and Carboplatin.
While on chemo, my wife was doing pretty well. Then she had severe pain in her back, after further review found out she had two stones (we knew these were present before) both drop to her ureters, one on each side. She went through 3 or so weeks of hell, getting temporary stints due to bacteria around the stones, then a week later getting those taken out, stones removed, and then temporary stints back in place to be removed a few days later. Once these were removed, she was still in severe pain intermittently, which we thought was due to the stints. Finally after a week of this we went back to the hospital to get another CT, which then showed that more tumors had grown and were around her kidneys and lower intestine area.
At this time she had just done a chemo treatment so we had to wait awhile before the next treatment stage. We just started YERVOY yesterday. As I understand it this is a great drug but slow acting, this is why the Dr's didn't want to try it earlier, they wanted to get a jump on the cancer before going to this drug.
At this time, there really are no other options being presented to us, I do have confidence in the place we are being treated, but wanted to know if anyone had any other experiences that they would care to share, or options they can think of. We are willing to travel for further treatment, as of now we go to Mayo Clinic in Rochester MN, which in our area is the best around us from what I understand.
Thank you for your time reading our story and hopefully some valuable input.
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- March 22, 2013 at 1:08 am
Not sure, but make sure you are dealing with a Doctor that specializes in Melanoma. There are many out there depending on your location, many on this site can give you some reccomendations. I am being treated in Mass General Hospital (Dr. Lawrence) and he is terrific. Second, you should make sure your wife gets her Melanoma characterized for its genetic make-up. Some of the more succesful treatments are targeted at specific mutations in her particular Melanoma. For example, I have been using BRAF/MEK inhibitors for a couple of years and its been great. She would have to have a specific BRAF mutation for it to work (50% of the Melanoma's have this mutation). She may have already been characterized as she responded to the ZELBORAF for awhile. Another targeted treatment (trial) is using a PD-1 approach. This site has alot of info on it's use and success stories.
I know its been a tough road, but keep the hope up. All of our prayers are with your wife. In many cases, it really takes a combination of approaches together that eventually work. I went through surgery, IL-2 and now BRAF/MEK inhibitors. Others you will read about on this site went through multiple attempts before their immune system kicked in and took care of the melanoma.
take care,
Jim
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- March 22, 2013 at 1:08 am
Not sure, but make sure you are dealing with a Doctor that specializes in Melanoma. There are many out there depending on your location, many on this site can give you some reccomendations. I am being treated in Mass General Hospital (Dr. Lawrence) and he is terrific. Second, you should make sure your wife gets her Melanoma characterized for its genetic make-up. Some of the more succesful treatments are targeted at specific mutations in her particular Melanoma. For example, I have been using BRAF/MEK inhibitors for a couple of years and its been great. She would have to have a specific BRAF mutation for it to work (50% of the Melanoma's have this mutation). She may have already been characterized as she responded to the ZELBORAF for awhile. Another targeted treatment (trial) is using a PD-1 approach. This site has alot of info on it's use and success stories.
I know its been a tough road, but keep the hope up. All of our prayers are with your wife. In many cases, it really takes a combination of approaches together that eventually work. I went through surgery, IL-2 and now BRAF/MEK inhibitors. Others you will read about on this site went through multiple attempts before their immune system kicked in and took care of the melanoma.
take care,
Jim
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- March 22, 2013 at 1:08 am
Not sure, but make sure you are dealing with a Doctor that specializes in Melanoma. There are many out there depending on your location, many on this site can give you some reccomendations. I am being treated in Mass General Hospital (Dr. Lawrence) and he is terrific. Second, you should make sure your wife gets her Melanoma characterized for its genetic make-up. Some of the more succesful treatments are targeted at specific mutations in her particular Melanoma. For example, I have been using BRAF/MEK inhibitors for a couple of years and its been great. She would have to have a specific BRAF mutation for it to work (50% of the Melanoma's have this mutation). She may have already been characterized as she responded to the ZELBORAF for awhile. Another targeted treatment (trial) is using a PD-1 approach. This site has alot of info on it's use and success stories.
I know its been a tough road, but keep the hope up. All of our prayers are with your wife. In many cases, it really takes a combination of approaches together that eventually work. I went through surgery, IL-2 and now BRAF/MEK inhibitors. Others you will read about on this site went through multiple attempts before their immune system kicked in and took care of the melanoma.
take care,
Jim
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- March 22, 2013 at 1:01 pm
We have been seeing Dr. Block, who is a melanoma doctor and works directly with Dr. Markovic, a highly thought of melanoma doctor, who we have seen on occasion. Seems that at Mayo anyways, the melanoma doctors all talk to each other about their patients for ideas and possible treatments. Both have been excelent in our eyes. Always checking on new ways to help us out. I made the post because we are out of options, and wanted to see what else was out there around the world.
My wife does have the BRAF mutation, I will look into the PD-1 approach.
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- March 25, 2013 at 4:44 pm
He is a good video about cancer in general
http://www.drjnaturalcancersupport.com/
Send me a email to [email protected]
with melanoma in the subject.
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- March 25, 2013 at 4:44 pm
He is a good video about cancer in general
http://www.drjnaturalcancersupport.com/
Send me a email to [email protected]
with melanoma in the subject.
-
- March 25, 2013 at 4:44 pm
He is a good video about cancer in general
http://www.drjnaturalcancersupport.com/
Send me a email to [email protected]
with melanoma in the subject.
-
- March 22, 2013 at 1:01 pm
We have been seeing Dr. Block, who is a melanoma doctor and works directly with Dr. Markovic, a highly thought of melanoma doctor, who we have seen on occasion. Seems that at Mayo anyways, the melanoma doctors all talk to each other about their patients for ideas and possible treatments. Both have been excelent in our eyes. Always checking on new ways to help us out. I made the post because we are out of options, and wanted to see what else was out there around the world.
My wife does have the BRAF mutation, I will look into the PD-1 approach.
-
- March 22, 2013 at 1:01 pm
We have been seeing Dr. Block, who is a melanoma doctor and works directly with Dr. Markovic, a highly thought of melanoma doctor, who we have seen on occasion. Seems that at Mayo anyways, the melanoma doctors all talk to each other about their patients for ideas and possible treatments. Both have been excelent in our eyes. Always checking on new ways to help us out. I made the post because we are out of options, and wanted to see what else was out there around the world.
My wife does have the BRAF mutation, I will look into the PD-1 approach.
-
- March 22, 2013 at 10:11 am
Just a quick addition to Jim's comments. This site lists Mayo as one of those centers that is competent in the treatment of melanoma. The list which includes Mayo says, "These treatment centers have a great deal of experience with melanoma, which is a necessity when choosing a treatment center."
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- March 22, 2013 at 10:11 am
Just a quick addition to Jim's comments. This site lists Mayo as one of those centers that is competent in the treatment of melanoma. The list which includes Mayo says, "These treatment centers have a great deal of experience with melanoma, which is a necessity when choosing a treatment center."
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- March 22, 2013 at 10:11 am
Just a quick addition to Jim's comments. This site lists Mayo as one of those centers that is competent in the treatment of melanoma. The list which includes Mayo says, "These treatment centers have a great deal of experience with melanoma, which is a necessity when choosing a treatment center."
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- March 29, 2013 at 1:47 am
I am currently going to Park Nicollet Clinic (PNC) in St. Louis Park, MN but before they start any treatment, they send me down to Mayo Rochester for their analysis/input. So far, they have been in agreement in all cases. I have been stage 3 from 1998 until Oct 2011 when a lung met was found and surgically removed. Stable until about October 2012 when more mets were found in both lungs.
Both Mayo and PNC agreed on doing Yervoy (Ipi) and then re-evaluating after the PET. Yervoy is supposed to take a little longer to respond but a good response seems to last longer. Unfortunately, while on Yervoy, I developed more tumors in the lungs and am now on Zelboraf which was also Mayo and PNCs choice. I think after this, I won't have any other options but the Zelboraf has shown some positive response even though I've had to cut the dose back serveral times due to hives and high liver function (AST and Bilirubin) levels.
Yesterday, my liver functions were good enough to start again at only one pill a day where the recommended dose is 4 pills, twice a day. I'm hoping that if I can stay on one for a long time, the tumor reductions will gradually reduce. Some have already disappeared (over the course of 2 months at various doses).
I would definitely inquire about the Zelboraf if she's eligible. My best to you and your wife. Keep us posted!
Sandy Grain
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- March 29, 2013 at 1:47 am
I am currently going to Park Nicollet Clinic (PNC) in St. Louis Park, MN but before they start any treatment, they send me down to Mayo Rochester for their analysis/input. So far, they have been in agreement in all cases. I have been stage 3 from 1998 until Oct 2011 when a lung met was found and surgically removed. Stable until about October 2012 when more mets were found in both lungs.
Both Mayo and PNC agreed on doing Yervoy (Ipi) and then re-evaluating after the PET. Yervoy is supposed to take a little longer to respond but a good response seems to last longer. Unfortunately, while on Yervoy, I developed more tumors in the lungs and am now on Zelboraf which was also Mayo and PNCs choice. I think after this, I won't have any other options but the Zelboraf has shown some positive response even though I've had to cut the dose back serveral times due to hives and high liver function (AST and Bilirubin) levels.
Yesterday, my liver functions were good enough to start again at only one pill a day where the recommended dose is 4 pills, twice a day. I'm hoping that if I can stay on one for a long time, the tumor reductions will gradually reduce. Some have already disappeared (over the course of 2 months at various doses).
I would definitely inquire about the Zelboraf if she's eligible. My best to you and your wife. Keep us posted!
Sandy Grain
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- April 6, 2013 at 1:56 pm
I believe there are cases now (not published) where patients are seeing second or third responses to Zelboraf. Can’t hurt asking about that. I’m very sorry you’ve had such a rough road. -
- April 6, 2013 at 1:56 pm
I believe there are cases now (not published) where patients are seeing second or third responses to Zelboraf. Can’t hurt asking about that. I’m very sorry you’ve had such a rough road. -
- April 6, 2013 at 1:56 pm
I believe there are cases now (not published) where patients are seeing second or third responses to Zelboraf. Can’t hurt asking about that. I’m very sorry you’ve had such a rough road.
-
- March 29, 2013 at 1:47 am
I am currently going to Park Nicollet Clinic (PNC) in St. Louis Park, MN but before they start any treatment, they send me down to Mayo Rochester for their analysis/input. So far, they have been in agreement in all cases. I have been stage 3 from 1998 until Oct 2011 when a lung met was found and surgically removed. Stable until about October 2012 when more mets were found in both lungs.
Both Mayo and PNC agreed on doing Yervoy (Ipi) and then re-evaluating after the PET. Yervoy is supposed to take a little longer to respond but a good response seems to last longer. Unfortunately, while on Yervoy, I developed more tumors in the lungs and am now on Zelboraf which was also Mayo and PNCs choice. I think after this, I won't have any other options but the Zelboraf has shown some positive response even though I've had to cut the dose back serveral times due to hives and high liver function (AST and Bilirubin) levels.
Yesterday, my liver functions were good enough to start again at only one pill a day where the recommended dose is 4 pills, twice a day. I'm hoping that if I can stay on one for a long time, the tumor reductions will gradually reduce. Some have already disappeared (over the course of 2 months at various doses).
I would definitely inquire about the Zelboraf if she's eligible. My best to you and your wife. Keep us posted!
Sandy Grain
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