› Forums › Cutaneous Melanoma Community › Carbo Taxol Success?
- This topic has 18 replies, 3 voices, and was last updated 11 years, 6 months ago by
MeNDave.
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- September 17, 2012 at 7:23 pm
My husband was diagnosed with mucosal melanoma in the nasal cavity in April. He had two surgeries on the nose (clear margins the second time around) and lymph nodes,, one of which tested postive, removed. Because of another developement with a primary lung cancer that they wanted to address first, treatment was delayed. While waiting for treatment for the lung cancer, his melanoma marched on. He woke up one morning and, literally, overnight, a large tumor and several pea sized tumors had popped up along the neck near the incision for the lymph node removal.&nbs
My husband was diagnosed with mucosal melanoma in the nasal cavity in April. He had two surgeries on the nose (clear margins the second time around) and lymph nodes,, one of which tested postive, removed. Because of another developement with a primary lung cancer that they wanted to address first, treatment was delayed. While waiting for treatment for the lung cancer, his melanoma marched on. He woke up one morning and, literally, overnight, a large tumor and several pea sized tumors had popped up along the neck near the incision for the lymph node removal. A biopsy was done and confirmed to be melanoma as suspected. Meanwhile, everything kept growing every single day while we waited for a phone call telling us when to go back for another scan before they decided what to do. I won't get in to all the communication problems between the doctors involved but in a matter of days the things were huge and pain developed. It took some doing on my part but they finally told me to take him to the ER two hours away, and yes, he is being treated by a melanoma specialist at a major cancer center. The largest tumor was pressing on a nerve, causing pain, pressing on an artery, causing high blood pressure, and close to affecting his breathing and swollowing. They were going to discharge him after a couple of days and schedule an appointment with the melanoma guy again. This, after all they had seen! I got wind that the doctor was leaving the country for a few weeks and insisted that we be seen that day. He was, and things got started. My husband is BRAF and CKit negative, not able to tolerate IL2 (at least for now) and because things were moving so fast they decided against Yervoy and went with Carbo/Taxol. It's working!! I watched the tumors shrink as fast as they grew! After one treatment, the main tumor was pretty much gone and they said they don't usually see any kind of response like that. Has anyone else here seen that kind of a response and if so, how long did it last? They told us that there was no durable response with the chemo and that they would use it until they could get to something else. Last week at round 2 of treatment, they said it might just work in him and that they may not do anymore after he's finished the chemo – just keep scanning and watch. He goes for another treatment next week and will be restaged at that time. As you can imagine, we are pretty happy right now but I know how fast things can change. He's not elligible for a clinical trial because of the lung cancer. I know the options are slim, but what should I be asking the doctors and what should I be looking for? I've learned a lot from skimming this board. The PA told me I ask a lot of questions and that most people don't do that. Really???? With something like this???? I like to be informed – the good, the bad, the ugly. "I don't know" is an acceptable answer too, but I want to know as much as I can about this, realizing that there are no guarantees, everyone is different, and so on. I'd love to hear from others who have tried carbo/taxol.
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- September 20, 2012 at 1:45 am
Carbo/taxol does work very quickly, but the response tends to me short lived. Right about now is when I wish we had a crystal ball to help make decisions in moving forward. For my husband, it worked for a few months. For some people, carbo/taxol is the answer. For others, it is like a rubber band snapping back, and things could change quickly. I would ask your oncologist if he would be willing to switch to Yervoy once the tumor burden is at a point where it is an option (read: not NED, just manageable).
I wish there were better answers out there for you. But this disease is just a crap shoot – and you never what will and won't work. I'll be thinking of you two.
All my best,
Maria
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- September 20, 2012 at 1:45 am
Carbo/taxol does work very quickly, but the response tends to me short lived. Right about now is when I wish we had a crystal ball to help make decisions in moving forward. For my husband, it worked for a few months. For some people, carbo/taxol is the answer. For others, it is like a rubber band snapping back, and things could change quickly. I would ask your oncologist if he would be willing to switch to Yervoy once the tumor burden is at a point where it is an option (read: not NED, just manageable).
I wish there were better answers out there for you. But this disease is just a crap shoot – and you never what will and won't work. I'll be thinking of you two.
All my best,
Maria
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- September 20, 2012 at 10:26 pm
Maria
Thank you for your response. I'm so sorry that you lost Dave. It's kind of you to remain on this board helping the rest of us. My husband is being treated at the Hillman Cancer Center. The doctors we have seen seem to be excellent doctors but there was a major breakdown in communication all the way around in the beginning. That seems to have been resolved. The motto you have on your page is the same one my husband uses. He has it framed at work. Thank you again. I will be praying fror you and your family.
Susan
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- September 24, 2012 at 2:25 am
Thank you Susan. Dave went to Hillman to try to get into the anti-pd1, but by the time we got there he was showing signs of brain mets. Michelle (who posted below) is right about not waiting for it to start growing again. Dave and Don's (Michelle's husband) treatment patterns were similar, and I also look back now and wish we had just done the 2 rounds of chemo and switched to Yervoy. He did do one treatment, but it was just too late – he did it on a Thursday and we admitted him to the hospital on Saturday. Keep pushing the doctors – and don't wait for it to start growing again.
All my best to both of you,
Maria
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- September 24, 2012 at 2:25 am
Thank you Susan. Dave went to Hillman to try to get into the anti-pd1, but by the time we got there he was showing signs of brain mets. Michelle (who posted below) is right about not waiting for it to start growing again. Dave and Don's (Michelle's husband) treatment patterns were similar, and I also look back now and wish we had just done the 2 rounds of chemo and switched to Yervoy. He did do one treatment, but it was just too late – he did it on a Thursday and we admitted him to the hospital on Saturday. Keep pushing the doctors – and don't wait for it to start growing again.
All my best to both of you,
Maria
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- September 24, 2012 at 2:25 am
Thank you Susan. Dave went to Hillman to try to get into the anti-pd1, but by the time we got there he was showing signs of brain mets. Michelle (who posted below) is right about not waiting for it to start growing again. Dave and Don's (Michelle's husband) treatment patterns were similar, and I also look back now and wish we had just done the 2 rounds of chemo and switched to Yervoy. He did do one treatment, but it was just too late – he did it on a Thursday and we admitted him to the hospital on Saturday. Keep pushing the doctors – and don't wait for it to start growing again.
All my best to both of you,
Maria
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- September 20, 2012 at 10:26 pm
Maria
Thank you for your response. I'm so sorry that you lost Dave. It's kind of you to remain on this board helping the rest of us. My husband is being treated at the Hillman Cancer Center. The doctors we have seen seem to be excellent doctors but there was a major breakdown in communication all the way around in the beginning. That seems to have been resolved. The motto you have on your page is the same one my husband uses. He has it framed at work. Thank you again. I will be praying fror you and your family.
Susan
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- September 20, 2012 at 10:26 pm
Maria
Thank you for your response. I'm so sorry that you lost Dave. It's kind of you to remain on this board helping the rest of us. My husband is being treated at the Hillman Cancer Center. The doctors we have seen seem to be excellent doctors but there was a major breakdown in communication all the way around in the beginning. That seems to have been resolved. The motto you have on your page is the same one my husband uses. He has it framed at work. Thank you again. I will be praying fror you and your family.
Susan
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- September 20, 2012 at 1:45 am
Carbo/taxol does work very quickly, but the response tends to me short lived. Right about now is when I wish we had a crystal ball to help make decisions in moving forward. For my husband, it worked for a few months. For some people, carbo/taxol is the answer. For others, it is like a rubber band snapping back, and things could change quickly. I would ask your oncologist if he would be willing to switch to Yervoy once the tumor burden is at a point where it is an option (read: not NED, just manageable).
I wish there were better answers out there for you. But this disease is just a crap shoot – and you never what will and won't work. I'll be thinking of you two.
All my best,
Maria
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- September 21, 2012 at 12:45 am
My husband had a fantastic response like your husband: his lung mets disappeared, all the tumors in his liver shrank to 50 percent or less, the lesions on his bones stopped growing and began to heal. At the time, chemo was literally his last line of defense because his cancer was growing so exponentially fast. My husband's tumor growth was VERY aggressive like your husband's.
However, the success was short-lived. He responded the most with the first treatment, slower but still responding with the second, stable at the third but then it started growing again after that. If I could recommend something, I would recommend a plan B in the works ASAP, because either option available to you will take time to work, and your husband may not have as large a window as others because of his aggressive tumor growth. Yervoy sounds like something that would be a good option, or maybe IL-2 if he could now tolerate it.
It's a tough call to come off the chemo to start Yervoy or IL2 or to wait until he stops responding to chemo first. We opted to wait and see and in retrospect, knowing what I now know, I'm not sure it was the right choice. Don's case was so aggressive that perhaps he would have had more chance if we'd started Yervoy when his tumor burden was at its lowest, giving him the time needed to respond.
Of course, Don's next step was Zelboraf which would not be an option for your husband because he's BRAF neg. Don didn't turn out to be a responder to the Zelboraf (long story, but apparently he wasn't BRAF positive but we thought he was) and that ate up a valuable window in which he could have possibly responded to Yervoy.
By the time we'd gotten to the Yervoy, it was too late. The melanoma had spread to his brain in multiple lesions and everything was growing like crazy.
Not sure what other information I could give you, but I hope this has somehow helped! : )
Michelle
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- September 24, 2012 at 10:51 pm
Thank you for your response. I'm so sorry that you lost your husband. It's very kind of you to still be here helping others. I've been looking into Yervoy and discovered that it is not covered by our insurance (Highmark Blue Cross/Blue Shield) and that it is horrifically expensive. There is no way that we can come up with even close to $130,00 or so for treatment. We can't even come close to digging up half that much. In another post, someone suggested that if it comes to that, the doctor himself contact the insurance company or the drug company to see if that will work. I'm just wondering how most people manage to get this drug paid for. I'm trying to plan ahead and be ready to jump if or when I need to. I've just got so many questions. The doctors don't seem to want to tell us anything unless we ask, and I've been told that I ask a lot of questions and that most people don't do that. Huh?? We're not talking about the flu here! I know they can't give me all the answers and telling me "I don't know" is perfectly acceptable to me, but let me ask!
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- September 26, 2012 at 7:45 pm
I would start by contacting a patient advocate, either with the insurance company, or your hospital. I find it odd that BC/BS won't cover it. I wonder if it's because of his lung cancer? But still…
Start there, and if that doesn't work, contact Bristol Myers Squibb directly. There's got to be a way to get this approved now so that you don't have a hold up in the future.
All my best to you two,
Maria
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- September 26, 2012 at 7:45 pm
I would start by contacting a patient advocate, either with the insurance company, or your hospital. I find it odd that BC/BS won't cover it. I wonder if it's because of his lung cancer? But still…
Start there, and if that doesn't work, contact Bristol Myers Squibb directly. There's got to be a way to get this approved now so that you don't have a hold up in the future.
All my best to you two,
Maria
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- September 26, 2012 at 7:45 pm
I would start by contacting a patient advocate, either with the insurance company, or your hospital. I find it odd that BC/BS won't cover it. I wonder if it's because of his lung cancer? But still…
Start there, and if that doesn't work, contact Bristol Myers Squibb directly. There's got to be a way to get this approved now so that you don't have a hold up in the future.
All my best to you two,
Maria
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- September 24, 2012 at 10:51 pm
Thank you for your response. I'm so sorry that you lost your husband. It's very kind of you to still be here helping others. I've been looking into Yervoy and discovered that it is not covered by our insurance (Highmark Blue Cross/Blue Shield) and that it is horrifically expensive. There is no way that we can come up with even close to $130,00 or so for treatment. We can't even come close to digging up half that much. In another post, someone suggested that if it comes to that, the doctor himself contact the insurance company or the drug company to see if that will work. I'm just wondering how most people manage to get this drug paid for. I'm trying to plan ahead and be ready to jump if or when I need to. I've just got so many questions. The doctors don't seem to want to tell us anything unless we ask, and I've been told that I ask a lot of questions and that most people don't do that. Huh?? We're not talking about the flu here! I know they can't give me all the answers and telling me "I don't know" is perfectly acceptable to me, but let me ask!
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- September 24, 2012 at 10:51 pm
Thank you for your response. I'm so sorry that you lost your husband. It's very kind of you to still be here helping others. I've been looking into Yervoy and discovered that it is not covered by our insurance (Highmark Blue Cross/Blue Shield) and that it is horrifically expensive. There is no way that we can come up with even close to $130,00 or so for treatment. We can't even come close to digging up half that much. In another post, someone suggested that if it comes to that, the doctor himself contact the insurance company or the drug company to see if that will work. I'm just wondering how most people manage to get this drug paid for. I'm trying to plan ahead and be ready to jump if or when I need to. I've just got so many questions. The doctors don't seem to want to tell us anything unless we ask, and I've been told that I ask a lot of questions and that most people don't do that. Huh?? We're not talking about the flu here! I know they can't give me all the answers and telling me "I don't know" is perfectly acceptable to me, but let me ask!
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- September 21, 2012 at 12:45 am
My husband had a fantastic response like your husband: his lung mets disappeared, all the tumors in his liver shrank to 50 percent or less, the lesions on his bones stopped growing and began to heal. At the time, chemo was literally his last line of defense because his cancer was growing so exponentially fast. My husband's tumor growth was VERY aggressive like your husband's.
However, the success was short-lived. He responded the most with the first treatment, slower but still responding with the second, stable at the third but then it started growing again after that. If I could recommend something, I would recommend a plan B in the works ASAP, because either option available to you will take time to work, and your husband may not have as large a window as others because of his aggressive tumor growth. Yervoy sounds like something that would be a good option, or maybe IL-2 if he could now tolerate it.
It's a tough call to come off the chemo to start Yervoy or IL2 or to wait until he stops responding to chemo first. We opted to wait and see and in retrospect, knowing what I now know, I'm not sure it was the right choice. Don's case was so aggressive that perhaps he would have had more chance if we'd started Yervoy when his tumor burden was at its lowest, giving him the time needed to respond.
Of course, Don's next step was Zelboraf which would not be an option for your husband because he's BRAF neg. Don didn't turn out to be a responder to the Zelboraf (long story, but apparently he wasn't BRAF positive but we thought he was) and that ate up a valuable window in which he could have possibly responded to Yervoy.
By the time we'd gotten to the Yervoy, it was too late. The melanoma had spread to his brain in multiple lesions and everything was growing like crazy.
Not sure what other information I could give you, but I hope this has somehow helped! : )
Michelle
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- September 21, 2012 at 12:45 am
My husband had a fantastic response like your husband: his lung mets disappeared, all the tumors in his liver shrank to 50 percent or less, the lesions on his bones stopped growing and began to heal. At the time, chemo was literally his last line of defense because his cancer was growing so exponentially fast. My husband's tumor growth was VERY aggressive like your husband's.
However, the success was short-lived. He responded the most with the first treatment, slower but still responding with the second, stable at the third but then it started growing again after that. If I could recommend something, I would recommend a plan B in the works ASAP, because either option available to you will take time to work, and your husband may not have as large a window as others because of his aggressive tumor growth. Yervoy sounds like something that would be a good option, or maybe IL-2 if he could now tolerate it.
It's a tough call to come off the chemo to start Yervoy or IL2 or to wait until he stops responding to chemo first. We opted to wait and see and in retrospect, knowing what I now know, I'm not sure it was the right choice. Don's case was so aggressive that perhaps he would have had more chance if we'd started Yervoy when his tumor burden was at its lowest, giving him the time needed to respond.
Of course, Don's next step was Zelboraf which would not be an option for your husband because he's BRAF neg. Don didn't turn out to be a responder to the Zelboraf (long story, but apparently he wasn't BRAF positive but we thought he was) and that ate up a valuable window in which he could have possibly responded to Yervoy.
By the time we'd gotten to the Yervoy, it was too late. The melanoma had spread to his brain in multiple lesions and everything was growing like crazy.
Not sure what other information I could give you, but I hope this has somehow helped! : )
Michelle
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Tagged: cutaneous melanoma, mucosal melanoma
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