› Forums › Cutaneous Melanoma Community › New here, looking for advice & support.
- This topic has 54 replies, 8 voices, and was last updated 11 years, 7 months ago by
_Paul_.
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- September 21, 2012 at 11:39 am
Hi, all! Two months into my husband's journey with melanoma, I could use some contact with others on the same path. This past summer was quite the roller coaster. In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland. No sooner did we return home than Hans received a cancer diagnosis. From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! 😉
Hi, all! Two months into my husband's journey with melanoma, I could use some contact with others on the same path. This past summer was quite the roller coaster. In June, we traveled with our five boys to Europe, spending most of our time in Hans's native Switzerland. No sooner did we return home than Hans received a cancer diagnosis. From the Swiss Alps one week to the Seattle Cancer Care Alliance the next ~ talk about a rough landing! 😉
Hans had a wide local excision and sentinel lymph node biopsy in late July. Melanoma was present in one of two nodes, and the following month he had a lymph node dissection. He recovered well and none of the nodes showed further evidence of melanoma. Hans isn't a details kinda guy while I'm a Type A researcher, preparing to write a doctoral thesis (or so it seems!) on a subject I never wanted to know about. He took the results to mean he'd "beat" cancer. If only! Talking with the medical oncologist the other day brought him face to face with the reality that he's Stage IIIB (T4bN1aM0 to be specific).
So. Now what? The question anyone in this situation faces. Hans of course has to follow a surveillance regimen, with regular dermatological visits and CT scans. This is where my first question comes in. I've read in several places that Stage III patients should have scans every 3-4 months for the first couple of years after diagnosis. Our oncologist suggests every 6 months, staggered with the dermatology appointments, due to the exposure from frequent scans. (Our surgical oncologist also mentioned that they're doing scans less often now.) What's your thought on this, and what sort of management plan have you followed?
The oncologist addressed adjuvant therapies, and naturally interferon was mentioned. He presented the pros and cons and stressed that there's no right or wrong choice. We're aware that the potential benefits aren't quantifiable, and that the treatment, while tolerated differently by different people, can have a profound effect on one's lifestyle. We're really outdoor-oriented, athletic people; more significantly, we own and operate an organic dairy farm. Needless to say, a year of suppressed activity would be challenging for Hans ~ and the rest of us. His kneejerk reaction was, "No way!". And I totally get that. But as a guy in the prime of life (he's 45) with five children, the youngest of whom is 7 years old, something that potentially delays the progression of an aggressive, insidious disease may be better than nothing, kwim? So, much as I worry, reading about the toxicity of interferon; much as I hate the thought of how it may affect him (and us); and much as I hate that we'll never know if it did any good anyway ~ I'm leaning toward it. As for Hans, I think he just plain doesn't know what to do. Really, how on earth does one make this decision?!
There is a clinical trial comparing interferon to ipi that Hans may be eligible for ~ although he wouldn't know going in, of course, which drug he'd receive. While some aspects of the trial would be free, others would not, and our insurance won't cover research trials. As it is, our insurer has actually denied coverage for all the treatment Hans has received thus far. A long and ridiculous story, but suffice it to say I'm in an ongoing effort to appeal their decision. Only mentioning it in the context of the trial and our need to consider financial aspects.
Good grief, this become quite the novel. Thanks to those who have read this far, and to anyone who can offer words of encouragement or advice. I'm so weary of hearing well-meaning but uninformed people exclaim, "At least it's only skin cancer!". Sigh.
Cheers,
Colleen
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- September 21, 2012 at 1:04 pm
Hi Colleen, First I should say he is lucky to have you. There are decisions to be made with this beast & you have to be informed and/or have a melanoma specialist you trust. If you read my bio you will see it also snuck up on me & I decided to do interferon. In hindsight I wish I hadn't but that is based on my eventual lack of benefit & should not be the basis of anyone else's decision. I think it has to be his decision, not yours. When I was feeling lousy, especially that first month, it's good I didn't have anyone else to blame. I was on a 6-month scan schedule for a short time after the interferon and seeing a derm in between. I say a short time because it came back fairly quickly. But my drug trial seems to be beating it back and I am optimistic. I wish you all well. Dan
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- September 21, 2012 at 1:04 pm
Hi Colleen, First I should say he is lucky to have you. There are decisions to be made with this beast & you have to be informed and/or have a melanoma specialist you trust. If you read my bio you will see it also snuck up on me & I decided to do interferon. In hindsight I wish I hadn't but that is based on my eventual lack of benefit & should not be the basis of anyone else's decision. I think it has to be his decision, not yours. When I was feeling lousy, especially that first month, it's good I didn't have anyone else to blame. I was on a 6-month scan schedule for a short time after the interferon and seeing a derm in between. I say a short time because it came back fairly quickly. But my drug trial seems to be beating it back and I am optimistic. I wish you all well. Dan
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- September 21, 2012 at 2:04 pm
I'm so sorry to hear about your husband's diagnosis. I imagine that being stage IIIB must be emotionally a very difficult place to be. The cancer hasn't spread to othe organs YET and you keep thinking/hoping that if you make the right treatment decisions, it won't ever get to stage IV. Please, please keep telling yourself and your husband that melanoma is extremely fickle– absolutely nobody can predict if it will return or when or where. So speaking as one type A control freak to another, all you can do is make the best decision you can at the time and do NOT kick yourself if the disease does not respond the way you expected. Absolutely nobody has a crystal ball about melanoma. You're doing great just gathering information and being here on the forum.
I will leave to others specific advice about possibilities for stage IIIB treatments. I do recommend, however, that your husband's tumor be tested for the BRAF mutation. The result of that test will have a lot of influence on which treatment options and clinical trials are open to him if (remember–IF) that becomes necessary.
As for your insurance situation– that sucks! I so HATE our "health care" system! Why are Americans the only ones in the developed world who put up with this crap?! Don't get me started!
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- September 21, 2012 at 6:53 pm
Good advice, POW. Hans & I were just saying this morning that whatever he does, it's what he does, kwim? We can't drive ourselves nuts wondering if this, that, or the other can or will be the better route.
I'm not clear on what is meant by the BRAF mutation. I know that was mentioned at Hans's most recent appointment, and reading your post reminded me that I neglected to ask about it.
On our health care system, yes, you'd better believe I'd prefer to be back in Switzerland, dealing with this. Between researching melanoma and the "small" matter of raising five boys, dealing with health insurance issues might well put me over the edge!
Cheers,
Colleen
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- September 21, 2012 at 6:53 pm
Good advice, POW. Hans & I were just saying this morning that whatever he does, it's what he does, kwim? We can't drive ourselves nuts wondering if this, that, or the other can or will be the better route.
I'm not clear on what is meant by the BRAF mutation. I know that was mentioned at Hans's most recent appointment, and reading your post reminded me that I neglected to ask about it.
On our health care system, yes, you'd better believe I'd prefer to be back in Switzerland, dealing with this. Between researching melanoma and the "small" matter of raising five boys, dealing with health insurance issues might well put me over the edge!
Cheers,
Colleen
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- September 21, 2012 at 6:53 pm
Good advice, POW. Hans & I were just saying this morning that whatever he does, it's what he does, kwim? We can't drive ourselves nuts wondering if this, that, or the other can or will be the better route.
I'm not clear on what is meant by the BRAF mutation. I know that was mentioned at Hans's most recent appointment, and reading your post reminded me that I neglected to ask about it.
On our health care system, yes, you'd better believe I'd prefer to be back in Switzerland, dealing with this. Between researching melanoma and the "small" matter of raising five boys, dealing with health insurance issues might well put me over the edge!
Cheers,
Colleen
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- September 21, 2012 at 8:06 pm
BRAF is a protein expressed in melanoma cells. If the BRAF protein contains a specific mutation, there are 2 new drugs that can attack and kill the melanoma cells. One of the drugs is called Vemurafenib (trade name Zelboraf) which was FDA approved last year. The other is called Dabrafenib which is still in clinical trials. Both drugs are specific for melanoma and have minimal side effects. About 60% of melanomas contain the mutation and about 50% of the people who have that mutation respond to the new drugs. A lab has to determine the DNA sequence of a sample of your husband's tumor in order to determine if your husband's melanoma contains the BRAF mutation. He probably doesn't need or qualify for the BRAF drugs yet, but it would be good information for you to have in case you need it later.
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- September 22, 2012 at 3:59 am
Thank you, POW, for that clear explanation. Very helpful!
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- September 22, 2012 at 3:59 am
Thank you, POW, for that clear explanation. Very helpful!
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- September 22, 2012 at 3:59 am
Thank you, POW, for that clear explanation. Very helpful!
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- September 21, 2012 at 8:06 pm
BRAF is a protein expressed in melanoma cells. If the BRAF protein contains a specific mutation, there are 2 new drugs that can attack and kill the melanoma cells. One of the drugs is called Vemurafenib (trade name Zelboraf) which was FDA approved last year. The other is called Dabrafenib which is still in clinical trials. Both drugs are specific for melanoma and have minimal side effects. About 60% of melanomas contain the mutation and about 50% of the people who have that mutation respond to the new drugs. A lab has to determine the DNA sequence of a sample of your husband's tumor in order to determine if your husband's melanoma contains the BRAF mutation. He probably doesn't need or qualify for the BRAF drugs yet, but it would be good information for you to have in case you need it later.
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- September 21, 2012 at 8:06 pm
BRAF is a protein expressed in melanoma cells. If the BRAF protein contains a specific mutation, there are 2 new drugs that can attack and kill the melanoma cells. One of the drugs is called Vemurafenib (trade name Zelboraf) which was FDA approved last year. The other is called Dabrafenib which is still in clinical trials. Both drugs are specific for melanoma and have minimal side effects. About 60% of melanomas contain the mutation and about 50% of the people who have that mutation respond to the new drugs. A lab has to determine the DNA sequence of a sample of your husband's tumor in order to determine if your husband's melanoma contains the BRAF mutation. He probably doesn't need or qualify for the BRAF drugs yet, but it would be good information for you to have in case you need it later.
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- September 21, 2012 at 2:04 pm
I'm so sorry to hear about your husband's diagnosis. I imagine that being stage IIIB must be emotionally a very difficult place to be. The cancer hasn't spread to othe organs YET and you keep thinking/hoping that if you make the right treatment decisions, it won't ever get to stage IV. Please, please keep telling yourself and your husband that melanoma is extremely fickle– absolutely nobody can predict if it will return or when or where. So speaking as one type A control freak to another, all you can do is make the best decision you can at the time and do NOT kick yourself if the disease does not respond the way you expected. Absolutely nobody has a crystal ball about melanoma. You're doing great just gathering information and being here on the forum.
I will leave to others specific advice about possibilities for stage IIIB treatments. I do recommend, however, that your husband's tumor be tested for the BRAF mutation. The result of that test will have a lot of influence on which treatment options and clinical trials are open to him if (remember–IF) that becomes necessary.
As for your insurance situation– that sucks! I so HATE our "health care" system! Why are Americans the only ones in the developed world who put up with this crap?! Don't get me started!
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- September 21, 2012 at 2:04 pm
I'm so sorry to hear about your husband's diagnosis. I imagine that being stage IIIB must be emotionally a very difficult place to be. The cancer hasn't spread to othe organs YET and you keep thinking/hoping that if you make the right treatment decisions, it won't ever get to stage IV. Please, please keep telling yourself and your husband that melanoma is extremely fickle– absolutely nobody can predict if it will return or when or where. So speaking as one type A control freak to another, all you can do is make the best decision you can at the time and do NOT kick yourself if the disease does not respond the way you expected. Absolutely nobody has a crystal ball about melanoma. You're doing great just gathering information and being here on the forum.
I will leave to others specific advice about possibilities for stage IIIB treatments. I do recommend, however, that your husband's tumor be tested for the BRAF mutation. The result of that test will have a lot of influence on which treatment options and clinical trials are open to him if (remember–IF) that becomes necessary.
As for your insurance situation– that sucks! I so HATE our "health care" system! Why are Americans the only ones in the developed world who put up with this crap?! Don't get me started!
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- September 21, 2012 at 6:46 pm
Thanks, Dan. I wholeheartedly agree that it has to be his decision. If only it were clear-cut, right?! Great news about your positive response on the drug trial. Keep on keeping on!
Cheers,
Colleen
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- September 21, 2012 at 6:46 pm
Thanks, Dan. I wholeheartedly agree that it has to be his decision. If only it were clear-cut, right?! Great news about your positive response on the drug trial. Keep on keeping on!
Cheers,
Colleen
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- September 21, 2012 at 6:46 pm
Thanks, Dan. I wholeheartedly agree that it has to be his decision. If only it were clear-cut, right?! Great news about your positive response on the drug trial. Keep on keeping on!
Cheers,
Colleen
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- September 21, 2012 at 1:04 pm
Hi Colleen, First I should say he is lucky to have you. There are decisions to be made with this beast & you have to be informed and/or have a melanoma specialist you trust. If you read my bio you will see it also snuck up on me & I decided to do interferon. In hindsight I wish I hadn't but that is based on my eventual lack of benefit & should not be the basis of anyone else's decision. I think it has to be his decision, not yours. When I was feeling lousy, especially that first month, it's good I didn't have anyone else to blame. I was on a 6-month scan schedule for a short time after the interferon and seeing a derm in between. I say a short time because it came back fairly quickly. But my drug trial seems to be beating it back and I am optimistic. I wish you all well. Dan
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- September 21, 2012 at 4:11 pm
Colleen,
I am currently stage IIIb and also had my insurance company tell me they wouldn't cover a clinical trial, but I let my doctors know about it, and they called my insurance company and took care of it and made sure it will be, so hopefully your husband's doctors can do the same. Also, with future testing, they may need to pre-authorize certain tests with the insurance company, mine wouldn't cover my PET scan because it wasn't "medically necessary" (um, it found cancer, so yes it was!!), but that was really my old doctor's fault for not pre-authorizing (then saying they didn't even order the tests, as if I just decided to go get a PET scan on my own – this is why they are my OLD doc and not current!). If you don't feel like you're getting support from your husband's doctors, try to find new ones. I'm fortunate to have a Mayo Clinic in my hometown, but I know a lot of people travel for good medical care, and I'm sure it's worth it.
With the low success rate of interferon, I feel like getting into this trial and getting the ipi is my only chance at doing something that will actually help. Also, he will know which drug he is getting because the duration and timing of treatments are different. Interferon is a 20 minute infusion 5x a week for 4 weeks, then injecting yourself 3x a week for 11 months, and ipi is a 90 minute infusion every 3 weeks for 3 months, then every 12 weeks for about a year, I can't remember that detail – and this is all what I read in the clinical trial informed consent. That is something I like about this trial, because the thought of doing a trial where you don't know if you're getting a placebo or real meds is pretty scary, plus the hassle of going to get infusions, having a needle stuck in you for no reason, UGH! I really don't want to do any of this, and when my insurance company said they'd deny any claims related to the clinical trial, I felt like I was "off the hook", but now that I know that part is taken care of, I'm on board with at least trying. Now, if I get put into the interferon arm, I have a feeling I won't finish it, I'm not going to quit before I start, but if it makes me sick, I don't think I want to spend a year of my life that way. Not to sound morbid, but I can't help but think, what if I only have a few years left and I spend one of them sick?
Anyway, I believe the treatment options are personal choices, and I hope that your husband makes the best one for him and your family, and I also hope that insurance doesn't stand in the way of him having all the possible choices available for him.
Best of luck!
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- September 21, 2012 at 7:10 pm
Thanks for responding, mel123. I'm definitely getting support from our doctors; the challenge is on the insurance end. When the "in network" oncologists closest to us read Hans's initial path report, they immediately said they couldn't handle it and referred us to SCCA/UW. And yet the insurer claims that those same, local oncologists could have managed. Whatever! It's a mess, but one I'm going to keep after them not only for financial purposes but on principle.
Re the clinical trial, yes, Hans would know based on the treatment itself which drug he's receiving. I only meant that whether he receives interferon or ipi wouldn't be his choice. Where are you receiving treatment, btw? I wish you all the best!
Cheers,
Colleen
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- September 21, 2012 at 7:10 pm
Thanks for responding, mel123. I'm definitely getting support from our doctors; the challenge is on the insurance end. When the "in network" oncologists closest to us read Hans's initial path report, they immediately said they couldn't handle it and referred us to SCCA/UW. And yet the insurer claims that those same, local oncologists could have managed. Whatever! It's a mess, but one I'm going to keep after them not only for financial purposes but on principle.
Re the clinical trial, yes, Hans would know based on the treatment itself which drug he's receiving. I only meant that whether he receives interferon or ipi wouldn't be his choice. Where are you receiving treatment, btw? I wish you all the best!
Cheers,
Colleen
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- September 21, 2012 at 7:10 pm
Thanks for responding, mel123. I'm definitely getting support from our doctors; the challenge is on the insurance end. When the "in network" oncologists closest to us read Hans's initial path report, they immediately said they couldn't handle it and referred us to SCCA/UW. And yet the insurer claims that those same, local oncologists could have managed. Whatever! It's a mess, but one I'm going to keep after them not only for financial purposes but on principle.
Re the clinical trial, yes, Hans would know based on the treatment itself which drug he's receiving. I only meant that whether he receives interferon or ipi wouldn't be his choice. Where are you receiving treatment, btw? I wish you all the best!
Cheers,
Colleen
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- September 21, 2012 at 8:10 pm
Colleen,
Totally know what you mean about not having a choice! I’d much rather be able to decide on my own to take Yervoy/ipi, but for now I think it’s really difficult to get insurance to pay for it – although you could have some luck, I know I’ve heard of it happening on these message boards. I’m in Florida & going to Mayo Clinic, they’re pretty great so far.Best of luck dealing with the insurance, I don’t understand why they think they know where your husband should be treated! Crazy!
Have a great afternoon!
Melissa
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- September 21, 2012 at 8:10 pm
Colleen,
Totally know what you mean about not having a choice! I’d much rather be able to decide on my own to take Yervoy/ipi, but for now I think it’s really difficult to get insurance to pay for it – although you could have some luck, I know I’ve heard of it happening on these message boards. I’m in Florida & going to Mayo Clinic, they’re pretty great so far.Best of luck dealing with the insurance, I don’t understand why they think they know where your husband should be treated! Crazy!
Have a great afternoon!
Melissa
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- September 21, 2012 at 8:10 pm
Colleen,
Totally know what you mean about not having a choice! I’d much rather be able to decide on my own to take Yervoy/ipi, but for now I think it’s really difficult to get insurance to pay for it – although you could have some luck, I know I’ve heard of it happening on these message boards. I’m in Florida & going to Mayo Clinic, they’re pretty great so far.Best of luck dealing with the insurance, I don’t understand why they think they know where your husband should be treated! Crazy!
Have a great afternoon!
Melissa
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- September 21, 2012 at 7:25 pm
Just a couple thoughts that occurred to me after reading this. First, in my drug trial, everyone gets the med. There is no placebo. I would hope that when dealing with life & death, there are no placebos in clinical trials. Someone more informed than I, please comment on that. Second, about insurance companies (I hate insurance companies). Let's say that patient X has a choice of getting in a drug trial that is looking real good or going on Yervoy. For the trial the insurance would have to pay for scans, bloodwork, and doctor visits but not the drug. They deny it because it is not yet FDA approved. So patient X goes on Yervoy and the insurance has to pay for scans, bloodwork, and doctor visits plus $140,000 for the Yervoy. Shortsighted paper-pushers! Dan
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- September 21, 2012 at 7:25 pm
Just a couple thoughts that occurred to me after reading this. First, in my drug trial, everyone gets the med. There is no placebo. I would hope that when dealing with life & death, there are no placebos in clinical trials. Someone more informed than I, please comment on that. Second, about insurance companies (I hate insurance companies). Let's say that patient X has a choice of getting in a drug trial that is looking real good or going on Yervoy. For the trial the insurance would have to pay for scans, bloodwork, and doctor visits but not the drug. They deny it because it is not yet FDA approved. So patient X goes on Yervoy and the insurance has to pay for scans, bloodwork, and doctor visits plus $140,000 for the Yervoy. Shortsighted paper-pushers! Dan
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- September 21, 2012 at 7:25 pm
Just a couple thoughts that occurred to me after reading this. First, in my drug trial, everyone gets the med. There is no placebo. I would hope that when dealing with life & death, there are no placebos in clinical trials. Someone more informed than I, please comment on that. Second, about insurance companies (I hate insurance companies). Let's say that patient X has a choice of getting in a drug trial that is looking real good or going on Yervoy. For the trial the insurance would have to pay for scans, bloodwork, and doctor visits but not the drug. They deny it because it is not yet FDA approved. So patient X goes on Yervoy and the insurance has to pay for scans, bloodwork, and doctor visits plus $140,000 for the Yervoy. Shortsighted paper-pushers! Dan
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- September 22, 2012 at 4:10 am
Hi, audgator! I'd assume there are clinical trials that involve placebos, but in this particular trial that's not the case.
Re insurances practices/decisions, yes, "short-sighted" is one apt and polite way to put it. Ahem.
Cheers,
Colleen
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- September 22, 2012 at 4:10 am
Hi, audgator! I'd assume there are clinical trials that involve placebos, but in this particular trial that's not the case.
Re insurances practices/decisions, yes, "short-sighted" is one apt and polite way to put it. Ahem.
Cheers,
Colleen
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- September 22, 2012 at 4:10 am
Hi, audgator! I'd assume there are clinical trials that involve placebos, but in this particular trial that's not the case.
Re insurances practices/decisions, yes, "short-sighted" is one apt and polite way to put it. Ahem.
Cheers,
Colleen
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- September 21, 2012 at 4:11 pm
Colleen,
I am currently stage IIIb and also had my insurance company tell me they wouldn't cover a clinical trial, but I let my doctors know about it, and they called my insurance company and took care of it and made sure it will be, so hopefully your husband's doctors can do the same. Also, with future testing, they may need to pre-authorize certain tests with the insurance company, mine wouldn't cover my PET scan because it wasn't "medically necessary" (um, it found cancer, so yes it was!!), but that was really my old doctor's fault for not pre-authorizing (then saying they didn't even order the tests, as if I just decided to go get a PET scan on my own – this is why they are my OLD doc and not current!). If you don't feel like you're getting support from your husband's doctors, try to find new ones. I'm fortunate to have a Mayo Clinic in my hometown, but I know a lot of people travel for good medical care, and I'm sure it's worth it.
With the low success rate of interferon, I feel like getting into this trial and getting the ipi is my only chance at doing something that will actually help. Also, he will know which drug he is getting because the duration and timing of treatments are different. Interferon is a 20 minute infusion 5x a week for 4 weeks, then injecting yourself 3x a week for 11 months, and ipi is a 90 minute infusion every 3 weeks for 3 months, then every 12 weeks for about a year, I can't remember that detail – and this is all what I read in the clinical trial informed consent. That is something I like about this trial, because the thought of doing a trial where you don't know if you're getting a placebo or real meds is pretty scary, plus the hassle of going to get infusions, having a needle stuck in you for no reason, UGH! I really don't want to do any of this, and when my insurance company said they'd deny any claims related to the clinical trial, I felt like I was "off the hook", but now that I know that part is taken care of, I'm on board with at least trying. Now, if I get put into the interferon arm, I have a feeling I won't finish it, I'm not going to quit before I start, but if it makes me sick, I don't think I want to spend a year of my life that way. Not to sound morbid, but I can't help but think, what if I only have a few years left and I spend one of them sick?
Anyway, I believe the treatment options are personal choices, and I hope that your husband makes the best one for him and your family, and I also hope that insurance doesn't stand in the way of him having all the possible choices available for him.
Best of luck!
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- September 21, 2012 at 4:11 pm
Colleen,
I am currently stage IIIb and also had my insurance company tell me they wouldn't cover a clinical trial, but I let my doctors know about it, and they called my insurance company and took care of it and made sure it will be, so hopefully your husband's doctors can do the same. Also, with future testing, they may need to pre-authorize certain tests with the insurance company, mine wouldn't cover my PET scan because it wasn't "medically necessary" (um, it found cancer, so yes it was!!), but that was really my old doctor's fault for not pre-authorizing (then saying they didn't even order the tests, as if I just decided to go get a PET scan on my own – this is why they are my OLD doc and not current!). If you don't feel like you're getting support from your husband's doctors, try to find new ones. I'm fortunate to have a Mayo Clinic in my hometown, but I know a lot of people travel for good medical care, and I'm sure it's worth it.
With the low success rate of interferon, I feel like getting into this trial and getting the ipi is my only chance at doing something that will actually help. Also, he will know which drug he is getting because the duration and timing of treatments are different. Interferon is a 20 minute infusion 5x a week for 4 weeks, then injecting yourself 3x a week for 11 months, and ipi is a 90 minute infusion every 3 weeks for 3 months, then every 12 weeks for about a year, I can't remember that detail – and this is all what I read in the clinical trial informed consent. That is something I like about this trial, because the thought of doing a trial where you don't know if you're getting a placebo or real meds is pretty scary, plus the hassle of going to get infusions, having a needle stuck in you for no reason, UGH! I really don't want to do any of this, and when my insurance company said they'd deny any claims related to the clinical trial, I felt like I was "off the hook", but now that I know that part is taken care of, I'm on board with at least trying. Now, if I get put into the interferon arm, I have a feeling I won't finish it, I'm not going to quit before I start, but if it makes me sick, I don't think I want to spend a year of my life that way. Not to sound morbid, but I can't help but think, what if I only have a few years left and I spend one of them sick?
Anyway, I believe the treatment options are personal choices, and I hope that your husband makes the best one for him and your family, and I also hope that insurance doesn't stand in the way of him having all the possible choices available for him.
Best of luck!
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- September 21, 2012 at 10:17 pm
Colleen:
I would join others in saying I am sorry you, your husband, and your family are going through this.
Do you by any chance know the mitotic rate? This refers to the rate at which the cells are dividing, and is based on how many cells in a particular area of the tumor are in mitosis, or active division.
As others have said, the "next steps" are very much up to the individual. I tend to think that thinner tumors and lower mitotic rates push toward observation only, while thicker tumors and higher mitotic rates push toward doing something. I think an adjuvant study could be very interesting.
Tim–MRF
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- September 21, 2012 at 10:17 pm
Colleen:
I would join others in saying I am sorry you, your husband, and your family are going through this.
Do you by any chance know the mitotic rate? This refers to the rate at which the cells are dividing, and is based on how many cells in a particular area of the tumor are in mitosis, or active division.
As others have said, the "next steps" are very much up to the individual. I tend to think that thinner tumors and lower mitotic rates push toward observation only, while thicker tumors and higher mitotic rates push toward doing something. I think an adjuvant study could be very interesting.
Tim–MRF
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- September 21, 2012 at 10:17 pm
Colleen:
I would join others in saying I am sorry you, your husband, and your family are going through this.
Do you by any chance know the mitotic rate? This refers to the rate at which the cells are dividing, and is based on how many cells in a particular area of the tumor are in mitosis, or active division.
As others have said, the "next steps" are very much up to the individual. I tend to think that thinner tumors and lower mitotic rates push toward observation only, while thicker tumors and higher mitotic rates push toward doing something. I think an adjuvant study could be very interesting.
Tim–MRF
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- September 22, 2012 at 4:16 am
I appreciate your input, Tim. Hans's mitotic rate was 6/mm (squared), per the original path report. The thickness of the tumor and high mitotic rate are concerns, to put it mildly.
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- September 22, 2012 at 4:16 am
I appreciate your input, Tim. Hans's mitotic rate was 6/mm (squared), per the original path report. The thickness of the tumor and high mitotic rate are concerns, to put it mildly.
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- September 22, 2012 at 4:16 am
I appreciate your input, Tim. Hans's mitotic rate was 6/mm (squared), per the original path report. The thickness of the tumor and high mitotic rate are concerns, to put it mildly.
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- September 22, 2012 at 12:46 am
Posted: 4:40:56 pm on 1/4/2008 Modified: 4:45:13 pm on 1/4/2008 Interferon can be a tough treatment to take. The research on it has been controversial, with opponents saying it only extends time of recurrence but not overall survival. Many centers of excellence don't prescribe it for melanoma treatment and that includes, Sloane Kettering, Mayo Clinic, Penn, and Johns Hopkins. It was once thought that the initial high dose might be the part that does something but that hasn't panned out. Please go to our current blog (http://www.melanomaintl.org/melanomablog/asp and read some of the opinions about it. I hope you have discussed this with your doctor and you may need another opinion about it as well. Let us know if we can help. Re: Stage IIIA-To Interferon or Not To Interferon?Posted: 3:07:59 pm on 11/5/2008 Modified: NeverAs a patient advocate I just want you to consider what you are choosing very carefully. I totally understand your reasons for choosing a toxic therapy such as interferon, as there really are no alternatives. (leukine or watch and wait) It is a scary prospect to think about melanoma recurring. But let me reiterate what the experts have told me: interferon does not prevent recurrence, or extend lifetime survival, it MAY extend recurrence time by one year. You may lose one year of productivity and quality of life. Do not choose interferon if you have a family history or personal history of depression or mental illness of any kind. It is known to exacerbate these conditions and it can be long term debilitation. Remember I am here to support you no matter what your decision is and I wish you a safe journey always in the paths you choose.Catherine M. Poole, President/FounderMelanoma International Foundation -
- September 22, 2012 at 12:46 am
Posted: 4:40:56 pm on 1/4/2008 Modified: 4:45:13 pm on 1/4/2008 Interferon can be a tough treatment to take. The research on it has been controversial, with opponents saying it only extends time of recurrence but not overall survival. Many centers of excellence don't prescribe it for melanoma treatment and that includes, Sloane Kettering, Mayo Clinic, Penn, and Johns Hopkins. It was once thought that the initial high dose might be the part that does something but that hasn't panned out. Please go to our current blog (http://www.melanomaintl.org/melanomablog/asp and read some of the opinions about it. I hope you have discussed this with your doctor and you may need another opinion about it as well. Let us know if we can help. Re: Stage IIIA-To Interferon or Not To Interferon?Posted: 3:07:59 pm on 11/5/2008 Modified: NeverAs a patient advocate I just want you to consider what you are choosing very carefully. I totally understand your reasons for choosing a toxic therapy such as interferon, as there really are no alternatives. (leukine or watch and wait) It is a scary prospect to think about melanoma recurring. But let me reiterate what the experts have told me: interferon does not prevent recurrence, or extend lifetime survival, it MAY extend recurrence time by one year. You may lose one year of productivity and quality of life. Do not choose interferon if you have a family history or personal history of depression or mental illness of any kind. It is known to exacerbate these conditions and it can be long term debilitation. Remember I am here to support you no matter what your decision is and I wish you a safe journey always in the paths you choose.Catherine M. Poole, President/FounderMelanoma International Foundation -
- September 22, 2012 at 12:46 am
Posted: 4:40:56 pm on 1/4/2008 Modified: 4:45:13 pm on 1/4/2008 Interferon can be a tough treatment to take. The research on it has been controversial, with opponents saying it only extends time of recurrence but not overall survival. Many centers of excellence don't prescribe it for melanoma treatment and that includes, Sloane Kettering, Mayo Clinic, Penn, and Johns Hopkins. It was once thought that the initial high dose might be the part that does something but that hasn't panned out. Please go to our current blog (http://www.melanomaintl.org/melanomablog/asp and read some of the opinions about it. I hope you have discussed this with your doctor and you may need another opinion about it as well. Let us know if we can help. Re: Stage IIIA-To Interferon or Not To Interferon?Posted: 3:07:59 pm on 11/5/2008 Modified: NeverAs a patient advocate I just want you to consider what you are choosing very carefully. I totally understand your reasons for choosing a toxic therapy such as interferon, as there really are no alternatives. (leukine or watch and wait) It is a scary prospect to think about melanoma recurring. But let me reiterate what the experts have told me: interferon does not prevent recurrence, or extend lifetime survival, it MAY extend recurrence time by one year. You may lose one year of productivity and quality of life. Do not choose interferon if you have a family history or personal history of depression or mental illness of any kind. It is known to exacerbate these conditions and it can be long term debilitation. Remember I am here to support you no matter what your decision is and I wish you a safe journey always in the paths you choose.Catherine M. Poole, President/FounderMelanoma International Foundation-
- September 22, 2012 at 4:25 am
Thanks for sharing your research. As I noted in my original post, we realize there are varying opinions on and reactions to interferon treatment. Of course anyone in this position is carefully considering what s/he is choosing. That goes without saying. : )
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- September 22, 2012 at 7:39 pm
Hi, Colleen, Just wanted to give you a little background on our situation. My husband was first diagnosed with melanoma on his right forearm, he had a wide local excision and was told to just follow up with dermatology every 3 months, which he did. Three years later on one of his visits to derm they felt an enlarged node under his right arm. He had a sentinel node biopsy done with 9 nodes removed and only the sentinel node was positive for melanoma. He was given the choice of interferon or a GSK immunotherapy clinical trial, he chose the latter. Three months into the trial, (which was randomized, with some receiving the vaccine and some the placebo) he had a recurrence under his right arm. He no longer qualified for the clinical trial. He had a total node dissection followed by 6 weeks of radiation. He remained free of disease for 11 months, but sadly his PET scan on the 12th month showed a spread to his spleen, muscles, mediastinum and subcutaneous areas. He was immediately put on Zelboraf. He has had many side effects from the Zel, but it has worked. His last Pet showed a decrease in size of everything! Due to the fact that he has so many side effects, the Drs. stopped the drug for about 2 weeks, and now he is on a reduced dosage. He is waiting for the results of the scan on Friday, and we are hoping for the best, then he will decide to either stay on the Zel or switch to Yervoy. This is just our situation, remember everyone is different, except for the fact that we all hate this disease and pray everyday for a cure.
Be strong and stay informed.
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- September 22, 2012 at 7:39 pm
Hi, Colleen, Just wanted to give you a little background on our situation. My husband was first diagnosed with melanoma on his right forearm, he had a wide local excision and was told to just follow up with dermatology every 3 months, which he did. Three years later on one of his visits to derm they felt an enlarged node under his right arm. He had a sentinel node biopsy done with 9 nodes removed and only the sentinel node was positive for melanoma. He was given the choice of interferon or a GSK immunotherapy clinical trial, he chose the latter. Three months into the trial, (which was randomized, with some receiving the vaccine and some the placebo) he had a recurrence under his right arm. He no longer qualified for the clinical trial. He had a total node dissection followed by 6 weeks of radiation. He remained free of disease for 11 months, but sadly his PET scan on the 12th month showed a spread to his spleen, muscles, mediastinum and subcutaneous areas. He was immediately put on Zelboraf. He has had many side effects from the Zel, but it has worked. His last Pet showed a decrease in size of everything! Due to the fact that he has so many side effects, the Drs. stopped the drug for about 2 weeks, and now he is on a reduced dosage. He is waiting for the results of the scan on Friday, and we are hoping for the best, then he will decide to either stay on the Zel or switch to Yervoy. This is just our situation, remember everyone is different, except for the fact that we all hate this disease and pray everyday for a cure.
Be strong and stay informed.
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- September 22, 2012 at 7:39 pm
Hi, Colleen, Just wanted to give you a little background on our situation. My husband was first diagnosed with melanoma on his right forearm, he had a wide local excision and was told to just follow up with dermatology every 3 months, which he did. Three years later on one of his visits to derm they felt an enlarged node under his right arm. He had a sentinel node biopsy done with 9 nodes removed and only the sentinel node was positive for melanoma. He was given the choice of interferon or a GSK immunotherapy clinical trial, he chose the latter. Three months into the trial, (which was randomized, with some receiving the vaccine and some the placebo) he had a recurrence under his right arm. He no longer qualified for the clinical trial. He had a total node dissection followed by 6 weeks of radiation. He remained free of disease for 11 months, but sadly his PET scan on the 12th month showed a spread to his spleen, muscles, mediastinum and subcutaneous areas. He was immediately put on Zelboraf. He has had many side effects from the Zel, but it has worked. His last Pet showed a decrease in size of everything! Due to the fact that he has so many side effects, the Drs. stopped the drug for about 2 weeks, and now he is on a reduced dosage. He is waiting for the results of the scan on Friday, and we are hoping for the best, then he will decide to either stay on the Zel or switch to Yervoy. This is just our situation, remember everyone is different, except for the fact that we all hate this disease and pray everyday for a cure.
Be strong and stay informed.
-
- September 22, 2012 at 4:25 am
Thanks for sharing your research. As I noted in my original post, we realize there are varying opinions on and reactions to interferon treatment. Of course anyone in this position is carefully considering what s/he is choosing. That goes without saying. : )
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- September 22, 2012 at 4:25 am
Thanks for sharing your research. As I noted in my original post, we realize there are varying opinions on and reactions to interferon treatment. Of course anyone in this position is carefully considering what s/he is choosing. That goes without saying. : )
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- October 1, 2012 at 1:22 am
Hi Colleen,
I am in the Seattle area too and was just diagnosed with IIIa in July. Who is his oncologist? SCCA has some very good melanoma specialists. I have been trying to get into a clinical trial as well (I should have my answer tomorrow) and my insurance (Premera) denied me coverage as well. For now I am using my credit card and I will try and appeal their decision as well.
I would be more than happy to share my experience so far with you and help with any questions you might have. There are many others in this site that are much more knowledgable than I, but maybe not with the same amount in common with Hans.
– Paul ([email protected])
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- October 1, 2012 at 1:22 am
Hi Colleen,
I am in the Seattle area too and was just diagnosed with IIIa in July. Who is his oncologist? SCCA has some very good melanoma specialists. I have been trying to get into a clinical trial as well (I should have my answer tomorrow) and my insurance (Premera) denied me coverage as well. For now I am using my credit card and I will try and appeal their decision as well.
I would be more than happy to share my experience so far with you and help with any questions you might have. There are many others in this site that are much more knowledgable than I, but maybe not with the same amount in common with Hans.
– Paul ([email protected])
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- October 1, 2012 at 1:22 am
Hi Colleen,
I am in the Seattle area too and was just diagnosed with IIIa in July. Who is his oncologist? SCCA has some very good melanoma specialists. I have been trying to get into a clinical trial as well (I should have my answer tomorrow) and my insurance (Premera) denied me coverage as well. For now I am using my credit card and I will try and appeal their decision as well.
I would be more than happy to share my experience so far with you and help with any questions you might have. There are many others in this site that are much more knowledgable than I, but maybe not with the same amount in common with Hans.
– Paul ([email protected])
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Tagged: cutaneous melanoma
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