› Forums › General Melanoma Community › Pathology has confirmed – now Stage IV
- This topic has 22 replies, 8 voices, and was last updated 12 years, 9 months ago by
workingdogs.
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- July 6, 2011 at 10:23 pm
So, we met the thoracic surgeon today, and we were told that Dave's cancer has spread and he is now Stage IV. They told us to wait up to 72 hours to schedule an appointment with the Medical Onc to discuss options, which I told them we would not – I have already called the Univ of Pitt Medical Center (Dr Kirkwood and Associates) who called me within 24 hours (including an email from Kirkwood himself) and who also have an open trial with IPI and GM-CSF. Amazingly, we received a phone call 5 minutes after leaving saying we had an appointment on Tuesday at 12
So, we met the thoracic surgeon today, and we were told that Dave's cancer has spread and he is now Stage IV. They told us to wait up to 72 hours to schedule an appointment with the Medical Onc to discuss options, which I told them we would not – I have already called the Univ of Pitt Medical Center (Dr Kirkwood and Associates) who called me within 24 hours (including an email from Kirkwood himself) and who also have an open trial with IPI and GM-CSF. Amazingly, we received a phone call 5 minutes after leaving saying we had an appointment on Tuesday at 12.30 (can anybody say squeaky wheel?). Since Roswell has one of the largest IL-2 clinics, I know that this is the route they will suggest. We are also looking into having his original tumor tested for B-RAF mutation – does anybody know how long this takes? Also, is there any other treatment others on the board have had that have shown prolonged OS? He has multiple enlarged matted lymph nodes in his upper partracheal and upper mediastinal areas, non-resectable. All other scans are clear, and at this time this is the only area of metastases.
ANY input or thoughts on which way to go would be greatly appreciated!!
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- July 6, 2011 at 11:18 pm
My husband so far is responding well to IL-2 therapy. He did his first round in April and will be heading back for round two next Monday. His tumor in his lung shrung some 10% and his liver tumor is stable with no spreading of the cancer to anywhere. Our Dr. was very pleased with the results. Hoping for good news again. Il-2 for us seemed like a good place to start.
Mike tested negative for B-RAF so that is not an option for us. I have not heard too much about B-RAF treatments but this is the place to be to find informative information and support for you.
Wishing you the very best and keeping you both in our thoughts and prayers.
Mike and Debby
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- July 6, 2011 at 11:18 pm
My husband so far is responding well to IL-2 therapy. He did his first round in April and will be heading back for round two next Monday. His tumor in his lung shrung some 10% and his liver tumor is stable with no spreading of the cancer to anywhere. Our Dr. was very pleased with the results. Hoping for good news again. Il-2 for us seemed like a good place to start.
Mike tested negative for B-RAF so that is not an option for us. I have not heard too much about B-RAF treatments but this is the place to be to find informative information and support for you.
Wishing you the very best and keeping you both in our thoughts and prayers.
Mike and Debby
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- July 6, 2011 at 11:35 pm
I'm not sure I can give you any recommendations as to which treatment route to go, but there are many, many people here who are stage IV who have first-hand experience on both of those regimens, so hopefully, they will answer.
What I CAN tell you is that BRAF testing takes 2-3 weeks to process IF they have a good enough sample. Otherwise, you may want them to do a fine needle biopsy of the newly infected area so that they can have it prepared the way they need it from the beginning.
In my husband's case, his first tumor turned out to be not usable for the BRAF test, but luckily, the doctor thought ahead and had them take another sample from a liver met as they were testing for staging.
Hopefully, the doctors you see will give you ALL the available options, whether or not they are available at their facility.
Have you considered looking into TIL treatments at NIH?
Michelle, wife of Don
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- July 6, 2011 at 11:35 pm
I'm not sure I can give you any recommendations as to which treatment route to go, but there are many, many people here who are stage IV who have first-hand experience on both of those regimens, so hopefully, they will answer.
What I CAN tell you is that BRAF testing takes 2-3 weeks to process IF they have a good enough sample. Otherwise, you may want them to do a fine needle biopsy of the newly infected area so that they can have it prepared the way they need it from the beginning.
In my husband's case, his first tumor turned out to be not usable for the BRAF test, but luckily, the doctor thought ahead and had them take another sample from a liver met as they were testing for staging.
Hopefully, the doctors you see will give you ALL the available options, whether or not they are available at their facility.
Have you considered looking into TIL treatments at NIH?
Michelle, wife of Don
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- July 7, 2011 at 2:57 am
Sorry to read that the pathology results have confirmed that Dave is now stage IV. As
mentioned by Michelle, the treatment at NIH is worth looking at. They use a form of
adoptive cell therapy (also called TIL treatment). It may also be available elsewhere, but
it is a very specialised procedure that requires real expertise.Yervoy (ipi) is a new drug that has been shown to increase overall survival (OS) in some
people. GM-CSF is also a valuable drug that has been shown to change the nature of
melanoma to make it more manageable with surgery. B-RAF and similar inhibitors also have
potential, but there is still a lot of work to be done in this area.To sum up, I really feel that the people who respond to adoptive cell therapy have the
best chance of achieving a durable long-term remission.Hope this helps.
Frank from Australia
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- July 7, 2011 at 2:57 am
Sorry to read that the pathology results have confirmed that Dave is now stage IV. As
mentioned by Michelle, the treatment at NIH is worth looking at. They use a form of
adoptive cell therapy (also called TIL treatment). It may also be available elsewhere, but
it is a very specialised procedure that requires real expertise.Yervoy (ipi) is a new drug that has been shown to increase overall survival (OS) in some
people. GM-CSF is also a valuable drug that has been shown to change the nature of
melanoma to make it more manageable with surgery. B-RAF and similar inhibitors also have
potential, but there is still a lot of work to be done in this area.To sum up, I really feel that the people who respond to adoptive cell therapy have the
best chance of achieving a durable long-term remission.Hope this helps.
Frank from Australia
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- July 7, 2011 at 4:51 am
My husband is being treated for stage 3b at the Providence Portland Cancer Center in Oregon. We spoke to his oncologist last visit about the treatment options if he does progress to stage 4. Dr Curti is having amazing success with a combination of IL2 and hig dose radiation. I am hesitant to quote his stated success rate because it sounds too good to be true but I have copied and pasted what one of his patients posted on the MIF site….
I cannot say enough about the care and treatment that I
received at the Providence Portland Cancer Center. It is a 3-year-old facility
with a floor that specialized in IL-2 patients. They have a higher than normal
success rate with IL-2 because their staff is specially trained to deal with
the side effects of IL-2 and as a result, they are able to give more doses in a
cycle. If you live on the West Coast and are contemplating IL-2, I highly
recommend that you consider the Providence Cancer Center.Also, I was given an experimental radiation treatment right
before the IL-2 therapy. This treatment involves a very high dose of radiation
to one tumor. The theory is that the radiation will break up the tumor and the
immune system will be primed to attack the disintegrating tumor. In early
trials this protocol has increased the success rate of IL-2 dramatically (8% to
75%!!). It will be four more weeks before I have my scans to confirm that IL-2
is working but the tumors that I can feel seem to be shrinking.Sounds very interesting and promising.
Kelly
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- July 7, 2011 at 4:51 am
My husband is being treated for stage 3b at the Providence Portland Cancer Center in Oregon. We spoke to his oncologist last visit about the treatment options if he does progress to stage 4. Dr Curti is having amazing success with a combination of IL2 and hig dose radiation. I am hesitant to quote his stated success rate because it sounds too good to be true but I have copied and pasted what one of his patients posted on the MIF site….
I cannot say enough about the care and treatment that I
received at the Providence Portland Cancer Center. It is a 3-year-old facility
with a floor that specialized in IL-2 patients. They have a higher than normal
success rate with IL-2 because their staff is specially trained to deal with
the side effects of IL-2 and as a result, they are able to give more doses in a
cycle. If you live on the West Coast and are contemplating IL-2, I highly
recommend that you consider the Providence Cancer Center.Also, I was given an experimental radiation treatment right
before the IL-2 therapy. This treatment involves a very high dose of radiation
to one tumor. The theory is that the radiation will break up the tumor and the
immune system will be primed to attack the disintegrating tumor. In early
trials this protocol has increased the success rate of IL-2 dramatically (8% to
75%!!). It will be four more weeks before I have my scans to confirm that IL-2
is working but the tumors that I can feel seem to be shrinking.Sounds very interesting and promising.
Kelly
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- July 7, 2011 at 4:47 pm
Maria – I am really sorry to hear this but glad it is confined to the nodes. You are so on top of everything and you have the knowledge, strength and tenacity to help your husband beat this. And you have contacted one of the best melanoma docs in the world. Now your husband can get the best drugs available to beat melanoma – which werent available to him before.
From all that I have read, bio-chemo, Ipi and IL-2 have the long term survivors. Since he has a low tumor burden perhaps Ipi/GMCSF would be best because of the time it takes to work.
My husband's scratch in throat issue has gone away but I still worry of course. He just had another mole removed and he has scans next month.
I am thinking of you – please keep us posted.
Emily
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- July 7, 2011 at 5:37 pm
Another side note – research or ask about Anti-PD1 which seems very promising in a number of cancers including mel – but remember that these trials don't usually allow prior treatment with Ipi (anti-ctlas)
http://clinicaltrials.gov/ct2/show/NCT00730639?term=MDX-1106&recr=Open&rank=1
http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=09-155
http://clinicaltrials.gov/ct2/show/NCT01176461?term=MDX-1106&recr=Open&rank=6
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- July 7, 2011 at 5:45 pm
Here is another AntiPD1 – http://clinicaltrials.gov/ct2/show/NCT00729664
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- July 7, 2011 at 11:05 pm
Thank you all so much for your input – I'll post again after we talk to Dr. Khushalani at RPCI. I actually spoke to one of his patients last night who had extensive Stage IV disease (liver, abdominal, lungs, etc) who had transferred there, who lives only 20 minutes from us. What a relief talking to him – after failing standard chemo, he was one of the first from Roswell to try the B-RAF trial out of Detroit. In 7 days he went from banging on deaths door to feeling well again, and is responding well enough to go back to work.
I will say one thing, after Dave had his recurrance I thought "why did we bother with the year from hell on interferon"? Then I realized, maybe if he hadn't done it, it would have come back sooner. And we may not have the options we have now. Hopefully we will find a treatment that shows a durable response until the next "big thing" comes out.
Best wishes to all of you –
Maria and Dave
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- July 7, 2011 at 11:05 pm
Thank you all so much for your input – I'll post again after we talk to Dr. Khushalani at RPCI. I actually spoke to one of his patients last night who had extensive Stage IV disease (liver, abdominal, lungs, etc) who had transferred there, who lives only 20 minutes from us. What a relief talking to him – after failing standard chemo, he was one of the first from Roswell to try the B-RAF trial out of Detroit. In 7 days he went from banging on deaths door to feeling well again, and is responding well enough to go back to work.
I will say one thing, after Dave had his recurrance I thought "why did we bother with the year from hell on interferon"? Then I realized, maybe if he hadn't done it, it would have come back sooner. And we may not have the options we have now. Hopefully we will find a treatment that shows a durable response until the next "big thing" comes out.
Best wishes to all of you –
Maria and Dave
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- July 7, 2011 at 5:45 pm
Here is another AntiPD1 – http://clinicaltrials.gov/ct2/show/NCT00729664
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- July 7, 2011 at 5:37 pm
Another side note – research or ask about Anti-PD1 which seems very promising in a number of cancers including mel – but remember that these trials don't usually allow prior treatment with Ipi (anti-ctlas)
http://clinicaltrials.gov/ct2/show/NCT00730639?term=MDX-1106&recr=Open&rank=1
http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=09-155
http://clinicaltrials.gov/ct2/show/NCT01176461?term=MDX-1106&recr=Open&rank=6
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- July 7, 2011 at 4:47 pm
Maria – I am really sorry to hear this but glad it is confined to the nodes. You are so on top of everything and you have the knowledge, strength and tenacity to help your husband beat this. And you have contacted one of the best melanoma docs in the world. Now your husband can get the best drugs available to beat melanoma – which werent available to him before.
From all that I have read, bio-chemo, Ipi and IL-2 have the long term survivors. Since he has a low tumor burden perhaps Ipi/GMCSF would be best because of the time it takes to work.
My husband's scratch in throat issue has gone away but I still worry of course. He just had another mole removed and he has scans next month.
I am thinking of you – please keep us posted.
Emily
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- July 15, 2011 at 12:40 am
Good luck Mariah…John is a good friend of mine. He has a big heart and is very ontop of treatments more than most know.
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- July 15, 2011 at 12:40 am
Good luck Mariah…John is a good friend of mine. He has a big heart and is very ontop of treatments more than most know.
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