› Forums › General Melanoma Community › Any advice appreciated
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cltml.
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- March 4, 2012 at 10:03 pm
I’ve been looking around this site for a few weeks now and am amazed, sometimes scared, but mostly comforted by the stories and friendly advice given. I, too, have a story and some questions.
First, here is my dad’s story:
At 50-years-old he was diagnosed with Melanoma in August of 2010 with a primary site right in the middle of his back at 0.95 mm deep with no SNB (SNB was discussed, however his initial oncologist decided against it). With scans and check ups with the oncologist every 6 months, he appeared NED until November 4, 2011. Early November he developed a baseball size tumor in his left axilla. Due to what I believe was a lack of education (and maybe a little denial), he went to his primary care doctor who put him on antibiotics for 2 weeks (another case of lack of education). As soon as I found out that he had been on antibiotics for two weeks I heavily encouraged that he make an appointment with his oncologist (initial). His oncologist, instead of seeing him, referred him straight to the general surgeon who had removed his primary-site melanoma. During that appointment the general surgeon told him that he didn’t preform axillary dissections and referred him back to the oncologist. So, almost one month later in December, the oncologist did what should have been done when the tumor appeared early November and confirmed with PET/CT that the melanoma had spread to the left axillary region (no other spread seen). Almost another month later, December 27, he finally had the complete axillary dissection and was diagnosed stage IIIc.
Completely unimpressed with the runaround that he was given, we encouraged Dad to move his care to the best within driving distance. He decided to go with Vanderbilt under the care of Dr. Sosman. While in the process of waiting for randomization for an Interferon vs. Ipi trial, he developed severe back pain. On January 31, 2012 it was confirmed that Dad had a compression fracture due to lytic melanoma metastasis. On February 13, 2012 PET/CT results showed multiple tumors along the vertebrae (cervical – sacrum), tumor growth back in his left axilla, and multiple tumors in his lung.
He has had radiation to both his axillary region as well as his lumbar and lower part of his thoracic spine.
Dad is BRAF wildtype and as far as I can make out from his report, HLA-A negative. He does have the NRAS mutation.
Dr. Sosman, after seeing the rapid spread and large tumor burden started him on Carboplatin/Taxol/Avastin February 23. Zometa starts tomorrow. He will get his second chemo infusion March 13. The plan is to scan sometime in the first week of April to see if Dad is a chemo responder. If so, he’ll complete a 3rd round of chemo before moving on to something else. If not, I understood the plan to be to start Ipi ASAP.
I have contacted NIH regarding their TIL trials, as I have read that they are some of the best around. I was told that Dad is not currently a candidate for TIL due to needing treatment now. It was relayed that he wouldn’t be able to wait the 4-6 weeks for the TILs to be harvested.
I have contacted the University of Cincinnati about anti-PLD 1 antibody trials. Dad would have to show progression on any current tx in order to qualify for that study.
I have contacted MD Anderson regarding trials for MEK 162 for NRAS mutation. Apparently that trial is on hold.
QUESTIONS:
First, Based on my father’s hx with melanoma (brief, rapidly progressing, now heavy tumor burden), does beginning with chemotherapy and Avastin seem appropriate?
Secondly, where do clinical trials play a role in this treatment process? I’ve hit quite a few brick walls in seeking out trial options. Does anyone know of any other institutions that have the TIL trials?
Any suggestions regarding treatment and clinical trials would be appreciated.
Thanks so much!
SRS
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- March 4, 2012 at 11:29 pm
SRS — There was a recent thread about TIL programs at MD Anderson and Moffitt. I'll try a link to the thread here, otherwise just search the bb for TIL and you will find it.
As for the chemo, it certainly is appropriate. But chemo in general does not have a high response rate, so many patients would rather take their chances with a newer treatment in a trial in the hopes that it would be more successful. Good luck.
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- March 4, 2012 at 11:29 pm
SRS — There was a recent thread about TIL programs at MD Anderson and Moffitt. I'll try a link to the thread here, otherwise just search the bb for TIL and you will find it.
As for the chemo, it certainly is appropriate. But chemo in general does not have a high response rate, so many patients would rather take their chances with a newer treatment in a trial in the hopes that it would be more successful. Good luck.
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- March 4, 2012 at 11:29 pm
SRS — There was a recent thread about TIL programs at MD Anderson and Moffitt. I'll try a link to the thread here, otherwise just search the bb for TIL and you will find it.
As for the chemo, it certainly is appropriate. But chemo in general does not have a high response rate, so many patients would rather take their chances with a newer treatment in a trial in the hopes that it would be more successful. Good luck.
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- March 5, 2012 at 4:31 am
Since he has an NRAS mutation, you may want to look for a combo Pi3K/MEK inhibitor trial. That's what my clinic is eyeing for me someday (I'm also an NRAS-mutated type). This is a targeted therapy, so any beneficial effects should start fairly soon, as opposed to immunotherapies which have a longer delay until you'll know if they're going to start working. 3 examples of Pi3K/MEK inhibitor combo trials for NRAS-mutated melanoma are:
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- March 5, 2012 at 4:51 am
And I'm really sorry you're going through this with your Dad.
One of the trials I linked to — MSC1936369B + SAR245409 — is listed as being done at Sarah Cannor Research Institute in Nashville so it might be near by if Vanderbilit is. So maybe that would be something to ask your oncologist about, alongside IPI. That type of combination — pi3k inhibitor + MEK inhibitor combo trial — is what my doc said my NCI-designated cancer center, UCSF, is currently eyeing, e.g. at the top of their list, for NRAS-mutated patients.
I have heard one of my oncologists talk about using chemo — biochemotherapy specifically — if I remeber correclty, just about the only situation it sounded like he considered biochemo for was to try to quickly reduce tumor burdern.
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- March 5, 2012 at 4:51 am
And I'm really sorry you're going through this with your Dad.
One of the trials I linked to — MSC1936369B + SAR245409 — is listed as being done at Sarah Cannor Research Institute in Nashville so it might be near by if Vanderbilit is. So maybe that would be something to ask your oncologist about, alongside IPI. That type of combination — pi3k inhibitor + MEK inhibitor combo trial — is what my doc said my NCI-designated cancer center, UCSF, is currently eyeing, e.g. at the top of their list, for NRAS-mutated patients.
I have heard one of my oncologists talk about using chemo — biochemotherapy specifically — if I remeber correclty, just about the only situation it sounded like he considered biochemo for was to try to quickly reduce tumor burdern.
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- March 5, 2012 at 4:51 am
And I'm really sorry you're going through this with your Dad.
One of the trials I linked to — MSC1936369B + SAR245409 — is listed as being done at Sarah Cannor Research Institute in Nashville so it might be near by if Vanderbilit is. So maybe that would be something to ask your oncologist about, alongside IPI. That type of combination — pi3k inhibitor + MEK inhibitor combo trial — is what my doc said my NCI-designated cancer center, UCSF, is currently eyeing, e.g. at the top of their list, for NRAS-mutated patients.
I have heard one of my oncologists talk about using chemo — biochemotherapy specifically — if I remeber correclty, just about the only situation it sounded like he considered biochemo for was to try to quickly reduce tumor burdern.
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- March 5, 2012 at 4:31 am
Since he has an NRAS mutation, you may want to look for a combo Pi3K/MEK inhibitor trial. That's what my clinic is eyeing for me someday (I'm also an NRAS-mutated type). This is a targeted therapy, so any beneficial effects should start fairly soon, as opposed to immunotherapies which have a longer delay until you'll know if they're going to start working. 3 examples of Pi3K/MEK inhibitor combo trials for NRAS-mutated melanoma are:
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- March 5, 2012 at 4:31 am
Since he has an NRAS mutation, you may want to look for a combo Pi3K/MEK inhibitor trial. That's what my clinic is eyeing for me someday (I'm also an NRAS-mutated type). This is a targeted therapy, so any beneficial effects should start fairly soon, as opposed to immunotherapies which have a longer delay until you'll know if they're going to start working. 3 examples of Pi3K/MEK inhibitor combo trials for NRAS-mutated melanoma are:
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- March 5, 2012 at 9:49 pm
SRS,
I, too, looked into TIL at NIH and was not a candidate for any of their TIL studies due to location of tumors and inability to harvest. We then went to Moffitt and met with Dr. Weber. He confirmed that my tumor, though large, was out of reach but also informed me that they had run out of money for growing TILs. The IL2 part of the treatment is covered by insurance in most cases, but I think he mentioned a cost of $20,000 to grow the TILs. They are seeking out new funds, so don't let this stop you if TIL is still a option you wish to seek for your father. However, as you mention, you may not have time until you get the disease stabilized.
On the issue of chemo, I think that failing chemo is a prerequisite for many Phase 1 or 2 trials. I've noticed that on several trials. Also, I think insurance companies may require chemo failure before ipi, perhaps for cost reasons. Too bad. Chemo was a waste of time for me. I am a mixed responder to IL2, and am now on ipi, first infusion.
My melanoma is indolent so I had some time to make some decisions. your father's is more aggressive. I would push to get another scan, declare chemo a failure (unless he's a one percenter) and get on to the targeted therapies mentioned in this thread or to ipi as quickly as you can.
Best wishes.
cltml
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- March 6, 2012 at 1:04 am
Thanks for considering this, ctlml. I've also read about Moffitt and others running out of funds for the TIL programs. We will be checking into other options.
About insurance companies requiring chemo before approving ipi — that doesn't make sense to me as many patients seem to have the option of treatment with ipi first. I was under the impression that the decision to start with chemotherapy was strictly clinical and had nothing to do with the insurance company dictating care. I will be checking into this, however, We will be getting to ipi as soon as possible.
Thanks again,
SRS
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- March 6, 2012 at 1:04 am
Thanks for considering this, ctlml. I've also read about Moffitt and others running out of funds for the TIL programs. We will be checking into other options.
About insurance companies requiring chemo before approving ipi — that doesn't make sense to me as many patients seem to have the option of treatment with ipi first. I was under the impression that the decision to start with chemotherapy was strictly clinical and had nothing to do with the insurance company dictating care. I will be checking into this, however, We will be getting to ipi as soon as possible.
Thanks again,
SRS
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- March 6, 2012 at 1:04 am
Thanks for considering this, ctlml. I've also read about Moffitt and others running out of funds for the TIL programs. We will be checking into other options.
About insurance companies requiring chemo before approving ipi — that doesn't make sense to me as many patients seem to have the option of treatment with ipi first. I was under the impression that the decision to start with chemotherapy was strictly clinical and had nothing to do with the insurance company dictating care. I will be checking into this, however, We will be getting to ipi as soon as possible.
Thanks again,
SRS
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- March 6, 2012 at 1:02 pm
I underwent chemo in Jan-Mar 2011 right before ipi received fda approval, if I recall. Perhaps it was a standard of care in early '11, and not an insurance mandate.
I do recall seeing it as a requirement for Phase 1 and 2 trials last year though.
Good luck srs.
cltml
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- March 6, 2012 at 1:02 pm
I underwent chemo in Jan-Mar 2011 right before ipi received fda approval, if I recall. Perhaps it was a standard of care in early '11, and not an insurance mandate.
I do recall seeing it as a requirement for Phase 1 and 2 trials last year though.
Good luck srs.
cltml
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- March 6, 2012 at 1:02 pm
I underwent chemo in Jan-Mar 2011 right before ipi received fda approval, if I recall. Perhaps it was a standard of care in early '11, and not an insurance mandate.
I do recall seeing it as a requirement for Phase 1 and 2 trials last year though.
Good luck srs.
cltml
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- March 5, 2012 at 9:49 pm
SRS,
I, too, looked into TIL at NIH and was not a candidate for any of their TIL studies due to location of tumors and inability to harvest. We then went to Moffitt and met with Dr. Weber. He confirmed that my tumor, though large, was out of reach but also informed me that they had run out of money for growing TILs. The IL2 part of the treatment is covered by insurance in most cases, but I think he mentioned a cost of $20,000 to grow the TILs. They are seeking out new funds, so don't let this stop you if TIL is still a option you wish to seek for your father. However, as you mention, you may not have time until you get the disease stabilized.
On the issue of chemo, I think that failing chemo is a prerequisite for many Phase 1 or 2 trials. I've noticed that on several trials. Also, I think insurance companies may require chemo failure before ipi, perhaps for cost reasons. Too bad. Chemo was a waste of time for me. I am a mixed responder to IL2, and am now on ipi, first infusion.
My melanoma is indolent so I had some time to make some decisions. your father's is more aggressive. I would push to get another scan, declare chemo a failure (unless he's a one percenter) and get on to the targeted therapies mentioned in this thread or to ipi as quickly as you can.
Best wishes.
cltml
-
- March 5, 2012 at 9:49 pm
SRS,
I, too, looked into TIL at NIH and was not a candidate for any of their TIL studies due to location of tumors and inability to harvest. We then went to Moffitt and met with Dr. Weber. He confirmed that my tumor, though large, was out of reach but also informed me that they had run out of money for growing TILs. The IL2 part of the treatment is covered by insurance in most cases, but I think he mentioned a cost of $20,000 to grow the TILs. They are seeking out new funds, so don't let this stop you if TIL is still a option you wish to seek for your father. However, as you mention, you may not have time until you get the disease stabilized.
On the issue of chemo, I think that failing chemo is a prerequisite for many Phase 1 or 2 trials. I've noticed that on several trials. Also, I think insurance companies may require chemo failure before ipi, perhaps for cost reasons. Too bad. Chemo was a waste of time for me. I am a mixed responder to IL2, and am now on ipi, first infusion.
My melanoma is indolent so I had some time to make some decisions. your father's is more aggressive. I would push to get another scan, declare chemo a failure (unless he's a one percenter) and get on to the targeted therapies mentioned in this thread or to ipi as quickly as you can.
Best wishes.
cltml
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