› Forums › General Melanoma Community › questions from a newbie for stage IV or anyone in the CA Bay Area
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5374brian.
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- January 9, 2013 at 3:42 am
My father, age 76, was diagnosed with stage IV melanoma in November after having a 3.5-cm tumor removed from his skull bone. They could not find a primary, and his PET scan otherwise looks clear (no evidence of disease). He also had a brain MRI and CT scans. The doctors say they don't know whether the next tumors will show up in two months or five years, but they will show up.
My father, age 76, was diagnosed with stage IV melanoma in November after having a 3.5-cm tumor removed from his skull bone. They could not find a primary, and his PET scan otherwise looks clear (no evidence of disease). He also had a brain MRI and CT scans. The doctors say they don't know whether the next tumors will show up in two months or five years, but they will show up. He is about to start a two-week course of radiation at the tumor site and was given two options for further treatment: 1) observation (wait-and-see) and 2) clinical trial of 10 mg/kg ipi, 3 mg/kg ipi, or interferon. He has Kaiser in the Bay Area, and we like his oncologist, but she is not a melanoma specialist. Apparently there are no melanoma specialists in Kaiser Northern California, and she will not refer outside this region. Here come my questions:
Is it worth seeing a melanoma specialist to discuss his treatment options? He isn't sure whether trying to get into the clinical trial is a good idea, since he currently has no observable tumors and he feels fine. The oncologist didn't seem to have any personal experience with the drug; she said she did not highly encourage it due to the side effects. I saw from older posts that a lot of people like Drs. Daud and Algazi at UCSF. We are willing to try them, but does anyone use or recommend any of the specialists at Stanford, which is closer to us? Any ballpark ideas for a consultation fee for second opinions from UCSF or Stanford?
Thanks in advance…
- Replies
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- January 9, 2013 at 4:35 am
Hi, I'm sorry to hear your father is dealing with this disease.
YES, it is IMO very much worth seeing a melanoma specialist. I did. I saw both the UCSF doctors you mentioned for second opinions, before switching insurers. My recollection is it cost about $400/visit "self-pay" to see one of them each time. I am very glad I saw them to shadow Kaiser's treatment options.
Your instinct to see a specialist locally sounds right to me. For Palo Alto, the AIM at Melanoma web site has a melanoma specialist finder page (http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html). They list for Standford:
Pigmented Lesion and Multidisciplinary Melanoma Clinics
900 Lake Wilbur Dr. W0001
Palo Alto, CA 94304
650-623-6105
Susan Swetter, M.D., Dir. of Pigmented Lesion & Melanoma Clinic
Daniel Chen, MDMy local Kaiser oncologist was not a melanoma specialist. She did refer me (also at Stage IV) to see Dr. Fawaz Gailani at the Riverside Kaiser Medical Center. I was very happy with the treatment (IL-2 in my case) and care I received there. Dr. Gailani is a real-life melanoma specialist. You could try contacting his office (his lead nurse is Robin Green) and see if there's anyway you can get a direct consult with him:
Kaiser Riverside Medical Center, Advanced BioChemotherapy Program, 951-353-4558
Good luck.
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- January 9, 2013 at 4:35 am
Hi, I'm sorry to hear your father is dealing with this disease.
YES, it is IMO very much worth seeing a melanoma specialist. I did. I saw both the UCSF doctors you mentioned for second opinions, before switching insurers. My recollection is it cost about $400/visit "self-pay" to see one of them each time. I am very glad I saw them to shadow Kaiser's treatment options.
Your instinct to see a specialist locally sounds right to me. For Palo Alto, the AIM at Melanoma web site has a melanoma specialist finder page (http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html). They list for Standford:
Pigmented Lesion and Multidisciplinary Melanoma Clinics
900 Lake Wilbur Dr. W0001
Palo Alto, CA 94304
650-623-6105
Susan Swetter, M.D., Dir. of Pigmented Lesion & Melanoma Clinic
Daniel Chen, MDMy local Kaiser oncologist was not a melanoma specialist. She did refer me (also at Stage IV) to see Dr. Fawaz Gailani at the Riverside Kaiser Medical Center. I was very happy with the treatment (IL-2 in my case) and care I received there. Dr. Gailani is a real-life melanoma specialist. You could try contacting his office (his lead nurse is Robin Green) and see if there's anyway you can get a direct consult with him:
Kaiser Riverside Medical Center, Advanced BioChemotherapy Program, 951-353-4558
Good luck.
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- January 9, 2013 at 4:35 am
Hi, I'm sorry to hear your father is dealing with this disease.
YES, it is IMO very much worth seeing a melanoma specialist. I did. I saw both the UCSF doctors you mentioned for second opinions, before switching insurers. My recollection is it cost about $400/visit "self-pay" to see one of them each time. I am very glad I saw them to shadow Kaiser's treatment options.
Your instinct to see a specialist locally sounds right to me. For Palo Alto, the AIM at Melanoma web site has a melanoma specialist finder page (http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagnosis/finding-the-right-doctor.html). They list for Standford:
Pigmented Lesion and Multidisciplinary Melanoma Clinics
900 Lake Wilbur Dr. W0001
Palo Alto, CA 94304
650-623-6105
Susan Swetter, M.D., Dir. of Pigmented Lesion & Melanoma Clinic
Daniel Chen, MDMy local Kaiser oncologist was not a melanoma specialist. She did refer me (also at Stage IV) to see Dr. Fawaz Gailani at the Riverside Kaiser Medical Center. I was very happy with the treatment (IL-2 in my case) and care I received there. Dr. Gailani is a real-life melanoma specialist. You could try contacting his office (his lead nurse is Robin Green) and see if there's anyway you can get a direct consult with him:
Kaiser Riverside Medical Center, Advanced BioChemotherapy Program, 951-353-4558
Good luck.
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- January 9, 2013 at 12:40 pm
It would seem to me that there would be no reason for your father to have to go into a clinical trial. The standard of care for Stage IV melanoma since 2011 includes ipilimumab and zelboraf. He may, however, as I was initially when I was NED after my original surgery to remove a tumor on my lung, be recommended to watch and wait till something else showed up. In my case, it was three months later, when two small tumors appeared on my brain and were treated with radiosurgery. I then began ipilimumb, which was totally paid for by my insurance. I have just completed that course of treatment at a melanoma "center of excellence," the University of Michigan, and will have further scans at the end of the month. I also was offered the "opportunity" to go into the clinical trial that you mention by a non-melanoma expert oncologist and decided to pass it up because of my knowledge of the difficult side effects of interferon. I am 72 and felt that my age argued against that kind of very difficult therapy unless it was absolutely necessary. There are side effects with ipi, but the serious ones involve less than 20% of those taking it. So far mine have been confined to some amount of fatigue and a fair amount of itching.
I did not pay anything out of pocket for my consult with another cancer center, in my case Sloan Kettering in New York, except travel to NYC and a hotel, etc. while staying there. By that time I had maxed out for 2012 on my own responsibility for medical bills. My insurance company gave me absolutely no problem on paying for a second opinion. I consulted with them in advance.
My very best to you and your father. I hope you find some good care, which I am sure you will be able to in your environs. I used to live in Portola Valley and was very impressed with Stanford and other medical facilities in the neighborhood.
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- January 9, 2013 at 12:40 pm
It would seem to me that there would be no reason for your father to have to go into a clinical trial. The standard of care for Stage IV melanoma since 2011 includes ipilimumab and zelboraf. He may, however, as I was initially when I was NED after my original surgery to remove a tumor on my lung, be recommended to watch and wait till something else showed up. In my case, it was three months later, when two small tumors appeared on my brain and were treated with radiosurgery. I then began ipilimumb, which was totally paid for by my insurance. I have just completed that course of treatment at a melanoma "center of excellence," the University of Michigan, and will have further scans at the end of the month. I also was offered the "opportunity" to go into the clinical trial that you mention by a non-melanoma expert oncologist and decided to pass it up because of my knowledge of the difficult side effects of interferon. I am 72 and felt that my age argued against that kind of very difficult therapy unless it was absolutely necessary. There are side effects with ipi, but the serious ones involve less than 20% of those taking it. So far mine have been confined to some amount of fatigue and a fair amount of itching.
I did not pay anything out of pocket for my consult with another cancer center, in my case Sloan Kettering in New York, except travel to NYC and a hotel, etc. while staying there. By that time I had maxed out for 2012 on my own responsibility for medical bills. My insurance company gave me absolutely no problem on paying for a second opinion. I consulted with them in advance.
My very best to you and your father. I hope you find some good care, which I am sure you will be able to in your environs. I used to live in Portola Valley and was very impressed with Stanford and other medical facilities in the neighborhood.
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- January 9, 2013 at 12:40 pm
It would seem to me that there would be no reason for your father to have to go into a clinical trial. The standard of care for Stage IV melanoma since 2011 includes ipilimumab and zelboraf. He may, however, as I was initially when I was NED after my original surgery to remove a tumor on my lung, be recommended to watch and wait till something else showed up. In my case, it was three months later, when two small tumors appeared on my brain and were treated with radiosurgery. I then began ipilimumb, which was totally paid for by my insurance. I have just completed that course of treatment at a melanoma "center of excellence," the University of Michigan, and will have further scans at the end of the month. I also was offered the "opportunity" to go into the clinical trial that you mention by a non-melanoma expert oncologist and decided to pass it up because of my knowledge of the difficult side effects of interferon. I am 72 and felt that my age argued against that kind of very difficult therapy unless it was absolutely necessary. There are side effects with ipi, but the serious ones involve less than 20% of those taking it. So far mine have been confined to some amount of fatigue and a fair amount of itching.
I did not pay anything out of pocket for my consult with another cancer center, in my case Sloan Kettering in New York, except travel to NYC and a hotel, etc. while staying there. By that time I had maxed out for 2012 on my own responsibility for medical bills. My insurance company gave me absolutely no problem on paying for a second opinion. I consulted with them in advance.
My very best to you and your father. I hope you find some good care, which I am sure you will be able to in your environs. I used to live in Portola Valley and was very impressed with Stanford and other medical facilities in the neighborhood.
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- January 9, 2013 at 1:31 pm
Anyone stage 4 should really be seeing a specialist. Interferon is falling out of favor for stage 3 and is not recommended for stage 4 as far as I know, so I don’t think the trial makes sense. Definitely get another opinion. Ipi has saved lives but you definitely want to get it somewhere with experience. Definitely ask if they have tested his tumor for the genetic mutation BRAF, which opens up other treatment possibilities. Better to do this now than be waiting around later if the tumors return. -
- January 9, 2013 at 1:31 pm
Anyone stage 4 should really be seeing a specialist. Interferon is falling out of favor for stage 3 and is not recommended for stage 4 as far as I know, so I don’t think the trial makes sense. Definitely get another opinion. Ipi has saved lives but you definitely want to get it somewhere with experience. Definitely ask if they have tested his tumor for the genetic mutation BRAF, which opens up other treatment possibilities. Better to do this now than be waiting around later if the tumors return. -
- January 9, 2013 at 1:31 pm
Anyone stage 4 should really be seeing a specialist. Interferon is falling out of favor for stage 3 and is not recommended for stage 4 as far as I know, so I don’t think the trial makes sense. Definitely get another opinion. Ipi has saved lives but you definitely want to get it somewhere with experience. Definitely ask if they have tested his tumor for the genetic mutation BRAF, which opens up other treatment possibilities. Better to do this now than be waiting around later if the tumors return. -
- January 9, 2013 at 6:41 pm
Thank you so much for your responses and good wishes. My father is BRAF-negative. The oncologist said that she could only prescribe ipi for stage IV melanoma where there are widespread apparent tumors, not in his case where he is NED, so his only option if he wanted ipi right now would be the clinical trial. I think we will try to see a local specialist either at UCSF or Stanford for a second opinion. I am not sure why his Kaiser doctor won't refer to Southern California Kaiser; I have heard good things about Dr. Gailani at Riverside. Maybe we will try again to ask her or try his office directly. Thanks again. -
- January 9, 2013 at 6:41 pm
Thank you so much for your responses and good wishes. My father is BRAF-negative. The oncologist said that she could only prescribe ipi for stage IV melanoma where there are widespread apparent tumors, not in his case where he is NED, so his only option if he wanted ipi right now would be the clinical trial. I think we will try to see a local specialist either at UCSF or Stanford for a second opinion. I am not sure why his Kaiser doctor won't refer to Southern California Kaiser; I have heard good things about Dr. Gailani at Riverside. Maybe we will try again to ask her or try his office directly. Thanks again.-
- January 9, 2013 at 8:02 pm
Definitely keep pushing. I have a stage 4 friend who did Ipi just after being surgically rendered NED. It is 9 mos later, he is still NED. I finished Ipi in December. When I started I had only one tiny tumor. Immunotherapies like Ipi are not a fast fix, so to say it is only for people with widespread tumors doesn’t make the least bit of sense to me. Find someone else. Be pushy about it. Good luck. -
- January 9, 2013 at 8:02 pm
Definitely keep pushing. I have a stage 4 friend who did Ipi just after being surgically rendered NED. It is 9 mos later, he is still NED. I finished Ipi in December. When I started I had only one tiny tumor. Immunotherapies like Ipi are not a fast fix, so to say it is only for people with widespread tumors doesn’t make the least bit of sense to me. Find someone else. Be pushy about it. Good luck. -
- January 10, 2013 at 3:34 am
Hi
We also have Kaiser in the Bay Area. When my son was dx I asked for a second opinion and was sent to Dr Swetter at Stanford. The oncologist did not question it and Kaiser paid for it. (If things progress, I would probably opt for UCSF..but knock on wood he won't need it).
I personally have been happy with Kaiser, but I know sometimes you have to push to get what you want.
Good Luck
Becky
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- January 10, 2013 at 3:34 am
Hi
We also have Kaiser in the Bay Area. When my son was dx I asked for a second opinion and was sent to Dr Swetter at Stanford. The oncologist did not question it and Kaiser paid for it. (If things progress, I would probably opt for UCSF..but knock on wood he won't need it).
I personally have been happy with Kaiser, but I know sometimes you have to push to get what you want.
Good Luck
Becky
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- January 10, 2013 at 3:34 am
Hi
We also have Kaiser in the Bay Area. When my son was dx I asked for a second opinion and was sent to Dr Swetter at Stanford. The oncologist did not question it and Kaiser paid for it. (If things progress, I would probably opt for UCSF..but knock on wood he won't need it).
I personally have been happy with Kaiser, but I know sometimes you have to push to get what you want.
Good Luck
Becky
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- January 9, 2013 at 8:02 pm
Definitely keep pushing. I have a stage 4 friend who did Ipi just after being surgically rendered NED. It is 9 mos later, he is still NED. I finished Ipi in December. When I started I had only one tiny tumor. Immunotherapies like Ipi are not a fast fix, so to say it is only for people with widespread tumors doesn’t make the least bit of sense to me. Find someone else. Be pushy about it. Good luck.
-
- January 9, 2013 at 6:41 pm
Thank you so much for your responses and good wishes. My father is BRAF-negative. The oncologist said that she could only prescribe ipi for stage IV melanoma where there are widespread apparent tumors, not in his case where he is NED, so his only option if he wanted ipi right now would be the clinical trial. I think we will try to see a local specialist either at UCSF or Stanford for a second opinion. I am not sure why his Kaiser doctor won't refer to Southern California Kaiser; I have heard good things about Dr. Gailani at Riverside. Maybe we will try again to ask her or try his office directly. Thanks again. -
- January 10, 2013 at 7:56 pm
So sorry to hear of the diagnosis.
My husband was diagnosed in Nov 2012 with Stage 4 mucosal melanoma in his sinus with mets in a number of bones (age 58). We have Kaiser (Oakland). We set up an apt with Dr Daud at UCSF and paid out of pocket (~$400), feel like it was worth it. We also paid out-of-pocket for the genetic sequencing since it seemed that Kaiser was unwilling or slow about it and we were anxious to proceed, maybe should have pushed Kaiser instead, but paid ~$2500. The consulting gave him more to work with in deciding to request IPI through Kaiser. He is now under treatment on IPI through Kaiser (Richmond and Oakland), with Dr. Gordon, covered entirely – the cost is around $30,000 per treatment so the insurance focus was on getting that within the covered system. Re responses to treatment – My husband is tired and has significant overall pain, some days he works half a day and others he sleeps essentially all day. We can't tell how much of the fatigue and pain is due to the disease and how much is the treatment. So far no clear side effect reactions to the treatment, i.e.., no colitis, etc.
Hope that helps a little – best wishes.
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- January 10, 2013 at 7:56 pm
So sorry to hear of the diagnosis.
My husband was diagnosed in Nov 2012 with Stage 4 mucosal melanoma in his sinus with mets in a number of bones (age 58). We have Kaiser (Oakland). We set up an apt with Dr Daud at UCSF and paid out of pocket (~$400), feel like it was worth it. We also paid out-of-pocket for the genetic sequencing since it seemed that Kaiser was unwilling or slow about it and we were anxious to proceed, maybe should have pushed Kaiser instead, but paid ~$2500. The consulting gave him more to work with in deciding to request IPI through Kaiser. He is now under treatment on IPI through Kaiser (Richmond and Oakland), with Dr. Gordon, covered entirely – the cost is around $30,000 per treatment so the insurance focus was on getting that within the covered system. Re responses to treatment – My husband is tired and has significant overall pain, some days he works half a day and others he sleeps essentially all day. We can't tell how much of the fatigue and pain is due to the disease and how much is the treatment. So far no clear side effect reactions to the treatment, i.e.., no colitis, etc.
Hope that helps a little – best wishes.
-
- January 10, 2013 at 7:56 pm
So sorry to hear of the diagnosis.
My husband was diagnosed in Nov 2012 with Stage 4 mucosal melanoma in his sinus with mets in a number of bones (age 58). We have Kaiser (Oakland). We set up an apt with Dr Daud at UCSF and paid out of pocket (~$400), feel like it was worth it. We also paid out-of-pocket for the genetic sequencing since it seemed that Kaiser was unwilling or slow about it and we were anxious to proceed, maybe should have pushed Kaiser instead, but paid ~$2500. The consulting gave him more to work with in deciding to request IPI through Kaiser. He is now under treatment on IPI through Kaiser (Richmond and Oakland), with Dr. Gordon, covered entirely – the cost is around $30,000 per treatment so the insurance focus was on getting that within the covered system. Re responses to treatment – My husband is tired and has significant overall pain, some days he works half a day and others he sleeps essentially all day. We can't tell how much of the fatigue and pain is due to the disease and how much is the treatment. So far no clear side effect reactions to the treatment, i.e.., no colitis, etc.
Hope that helps a little – best wishes.
-
- January 11, 2013 at 11:29 am
Genetic sequencing?? I just finished my Ipi course earlier this month. What function did the genetic sequencing play in the decision process? Besides determining whether or not I was BRAF positive before my treatment, my oncologist feels that any further genetic testing would be a waste of time and money. But I really am ignorant of this area so just have accepted what he has told me. Is there a further reason for any genetic testing?
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- January 11, 2013 at 11:29 am
Genetic sequencing?? I just finished my Ipi course earlier this month. What function did the genetic sequencing play in the decision process? Besides determining whether or not I was BRAF positive before my treatment, my oncologist feels that any further genetic testing would be a waste of time and money. But I really am ignorant of this area so just have accepted what he has told me. Is there a further reason for any genetic testing?
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- January 11, 2013 at 12:53 pm
Buffcody, you ask a good question– what good is (expensive) genetic testing except testing for the BRAF mutation?
It has always been a frustrating and puzzling aspect of cancer therapies that some patients respond and others do not. Why do we get "good" responses in only 10% or 15% of paitents? If a treatment is effective in some people, why is it not effective in everybody? And, of course, if only 15% of patients respond, we're wasting our precious healthcare dollars treating the other 85%, right?
What researchers and doctors are learning is that it's usually the genetic background of the patient that determines who will respond to any given drug and who will not. It's all still pretty much of a black box. But if they can do genetic testing on many, many people– responders as well as non-responders– they will eventually be able to figure out which genotypes will respond well to treatment A versus which genotypes will respond well to treatment B.
The overall goal is to eventually be able to prescribe exactly the right treatment that will be best for each individual and not waste time or money by administering a treatment that the person is unlikely to benefit from. Does this make sense?
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- January 11, 2013 at 12:53 pm
Buffcody, you ask a good question– what good is (expensive) genetic testing except testing for the BRAF mutation?
It has always been a frustrating and puzzling aspect of cancer therapies that some patients respond and others do not. Why do we get "good" responses in only 10% or 15% of paitents? If a treatment is effective in some people, why is it not effective in everybody? And, of course, if only 15% of patients respond, we're wasting our precious healthcare dollars treating the other 85%, right?
What researchers and doctors are learning is that it's usually the genetic background of the patient that determines who will respond to any given drug and who will not. It's all still pretty much of a black box. But if they can do genetic testing on many, many people– responders as well as non-responders– they will eventually be able to figure out which genotypes will respond well to treatment A versus which genotypes will respond well to treatment B.
The overall goal is to eventually be able to prescribe exactly the right treatment that will be best for each individual and not waste time or money by administering a treatment that the person is unlikely to benefit from. Does this make sense?
-
- January 11, 2013 at 12:53 pm
Buffcody, you ask a good question– what good is (expensive) genetic testing except testing for the BRAF mutation?
It has always been a frustrating and puzzling aspect of cancer therapies that some patients respond and others do not. Why do we get "good" responses in only 10% or 15% of paitents? If a treatment is effective in some people, why is it not effective in everybody? And, of course, if only 15% of patients respond, we're wasting our precious healthcare dollars treating the other 85%, right?
What researchers and doctors are learning is that it's usually the genetic background of the patient that determines who will respond to any given drug and who will not. It's all still pretty much of a black box. But if they can do genetic testing on many, many people– responders as well as non-responders– they will eventually be able to figure out which genotypes will respond well to treatment A versus which genotypes will respond well to treatment B.
The overall goal is to eventually be able to prescribe exactly the right treatment that will be best for each individual and not waste time or money by administering a treatment that the person is unlikely to benefit from. Does this make sense?
-
- January 16, 2013 at 11:16 am
POW,
Sorry. I missed seeing this when you posted. Just picked it up this morning. What you wrote makes a lot of sense. But it also suggests that someone has to make use of the data I provide by doing testing that will not play a part in my treatment. I wonder if that will be done eventually by someone who studies, for example, the records of those who present with my breed of melanoma in a retrospective study perhaps years later. I have certainly seen this kind of study. And the limitations are frequently based on the lack of data provided for individual subjects.
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- January 16, 2013 at 12:55 pm
Again, you are asking good questions. Who will use my genetic data? How and when will the data get into the hands of the researchers who are trying to corellate genotype to treatment effectiveness?
Just recently, I read a report where the government (I don't remember whether it was the National Cancer Institute or the FDA or which agency) was trying to get drug companies to be more transparent and share their raw data with all researchers. The intention is to do just what you suggest– pool the genetic and treatment response data from large numbers of patients so the researchers can more quickly figure out what is going on.
The drug companies, of course, want to keep all the information they gather during clinical trials proprietary. This is one place where cancer advocacy groups, including melanoma groups, can exert pressure. Pooling data will speed up the search for a cure for everyone.
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- January 16, 2013 at 12:55 pm
Again, you are asking good questions. Who will use my genetic data? How and when will the data get into the hands of the researchers who are trying to corellate genotype to treatment effectiveness?
Just recently, I read a report where the government (I don't remember whether it was the National Cancer Institute or the FDA or which agency) was trying to get drug companies to be more transparent and share their raw data with all researchers. The intention is to do just what you suggest– pool the genetic and treatment response data from large numbers of patients so the researchers can more quickly figure out what is going on.
The drug companies, of course, want to keep all the information they gather during clinical trials proprietary. This is one place where cancer advocacy groups, including melanoma groups, can exert pressure. Pooling data will speed up the search for a cure for everyone.
-
- January 16, 2013 at 12:55 pm
Again, you are asking good questions. Who will use my genetic data? How and when will the data get into the hands of the researchers who are trying to corellate genotype to treatment effectiveness?
Just recently, I read a report where the government (I don't remember whether it was the National Cancer Institute or the FDA or which agency) was trying to get drug companies to be more transparent and share their raw data with all researchers. The intention is to do just what you suggest– pool the genetic and treatment response data from large numbers of patients so the researchers can more quickly figure out what is going on.
The drug companies, of course, want to keep all the information they gather during clinical trials proprietary. This is one place where cancer advocacy groups, including melanoma groups, can exert pressure. Pooling data will speed up the search for a cure for everyone.
-
- January 16, 2013 at 11:16 am
POW,
Sorry. I missed seeing this when you posted. Just picked it up this morning. What you wrote makes a lot of sense. But it also suggests that someone has to make use of the data I provide by doing testing that will not play a part in my treatment. I wonder if that will be done eventually by someone who studies, for example, the records of those who present with my breed of melanoma in a retrospective study perhaps years later. I have certainly seen this kind of study. And the limitations are frequently based on the lack of data provided for individual subjects.
-
- January 16, 2013 at 11:16 am
POW,
Sorry. I missed seeing this when you posted. Just picked it up this morning. What you wrote makes a lot of sense. But it also suggests that someone has to make use of the data I provide by doing testing that will not play a part in my treatment. I wonder if that will be done eventually by someone who studies, for example, the records of those who present with my breed of melanoma in a retrospective study perhaps years later. I have certainly seen this kind of study. And the limitations are frequently based on the lack of data provided for individual subjects.
-
- January 11, 2013 at 11:29 am
Genetic sequencing?? I just finished my Ipi course earlier this month. What function did the genetic sequencing play in the decision process? Besides determining whether or not I was BRAF positive before my treatment, my oncologist feels that any further genetic testing would be a waste of time and money. But I really am ignorant of this area so just have accepted what he has told me. Is there a further reason for any genetic testing?
-
- January 16, 2013 at 10:45 pm
We are in Florida and my wife was diagnosed with Stage 4 metastizied melanoma. The diagnosis was on Dec 17,2012. We were immediately refered to the Moffitt Caner Center in Tampa. She has had all of your MRI, PET and CT scans. The spots are lung, liver, abdomen, and brain. The onclogist team decided on radiation for the brain. The spot on the brain was 5mm. Today was our day that she started Yervoy (IPI). She has had some fatique since we got back home. I am not sure if that could be from the medication or just all the pushing we have done to get to this point since being diagnosed. It justed seemed time slowed down during the holidays. We will be thinking of you and your husband and keeping you and all the others in our prayer. We are determined to be winners…
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- January 16, 2013 at 10:45 pm
We are in Florida and my wife was diagnosed with Stage 4 metastizied melanoma. The diagnosis was on Dec 17,2012. We were immediately refered to the Moffitt Caner Center in Tampa. She has had all of your MRI, PET and CT scans. The spots are lung, liver, abdomen, and brain. The onclogist team decided on radiation for the brain. The spot on the brain was 5mm. Today was our day that she started Yervoy (IPI). She has had some fatique since we got back home. I am not sure if that could be from the medication or just all the pushing we have done to get to this point since being diagnosed. It justed seemed time slowed down during the holidays. We will be thinking of you and your husband and keeping you and all the others in our prayer. We are determined to be winners…
-
- January 16, 2013 at 10:45 pm
We are in Florida and my wife was diagnosed with Stage 4 metastizied melanoma. The diagnosis was on Dec 17,2012. We were immediately refered to the Moffitt Caner Center in Tampa. She has had all of your MRI, PET and CT scans. The spots are lung, liver, abdomen, and brain. The onclogist team decided on radiation for the brain. The spot on the brain was 5mm. Today was our day that she started Yervoy (IPI). She has had some fatique since we got back home. I am not sure if that could be from the medication or just all the pushing we have done to get to this point since being diagnosed. It justed seemed time slowed down during the holidays. We will be thinking of you and your husband and keeping you and all the others in our prayer. We are determined to be winners…
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