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Father Diagnosed With Stage IV Melanoma Looking For Help

Forums General Melanoma Community Father Diagnosed With Stage IV Melanoma Looking For Help

  • Post
    was888
    Participant

      Hello everyone,

      My father was recently diagnosed with Stage IV Melanoma.  This is the second time around for him with Melanoma.  2 1/2 years ago he received a diagnosis of Stage III melanoma.  He had the nodes removed from his neck and began Interfuron and Radiation.  He was unfortunately not able to finish the Interfuron because of what it was doing to his health.  He is now 66 years old.

      Hello everyone,

      My father was recently diagnosed with Stage IV Melanoma.  This is the second time around for him with Melanoma.  2 1/2 years ago he received a diagnosis of Stage III melanoma.  He had the nodes removed from his neck and began Interfuron and Radiation.  He was unfortunately not able to finish the Interfuron because of what it was doing to his health.  He is now 66 years old.

      Last week he had his 3 month PET Scan and unfortunately this scan lit up.  They state they see 30-40 nodes of concern located throughout his body.  On Friday of last week he had a biopsy done on nodes below his arm pit on the left side.  They ended up taking out 4 golf ball sized nodes and did a biopsy in the surgery room and they all came back as positive for melanoma.  We should get his final biopsy results back today, however the doctor's stated that based upon the initial results they feel everything on the PET scan is now linked to melanoma.

      I am reaching out to this board to possibly help give some guidance on the most current and up to date treatment options available.  My father is willing to travel, and is ready to fight this horrid cancer.  We are meeting with his oncologist on Thursday to determine his recommendations of treatment after he is able to review the final biopsy reports.

      I had a good friend who passed away from Stage IV melanoma last year, so I am somewhat knowledgeable about the treatments and procedures, but know this board is full of people who can help provide more details on these treatments.

      Thank you all in advance for any info you are willing to share.

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    • Replies
        lhaley
        Participant

          There are a few directions you could go. Is your dad seeing a melanoma specialist?  Where are you located?  While you say you are willing to travel there are different options and a lot would depend on where you live.  Traveling is not that easy if a trial is involved. Sometimes it is weekly.

          Have your dad's tumor tested for B-raf mutations – that could take a few weeks.  Ippi is supposed to FDA approved this month (unless they are dragging their feet again). Your dad's health would also be a determining factor on choices.  Has he had a brain mri yet?

          I hope when you post some additional info we can help you better.

          Linda

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            was888
            Participant

              Thank you for your response Linda.  Yes my dad is seeing a melanoma specialist in Kansas City.  I guess my point was I know that many trials can only be done in specific locations.  We are able and willing to help him get to wherever he needs to go if that is his best option.

              Having the tumor tested for B-raf, what info would that give us?  Are their specific treatments based upon this test?

              I have done some reading about Ippi, do you have anymore info on this?

              He has had a brain MRI done last week and that came back good.

              I hope this extra info helps.

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              lhaley
              Participant

                I did a mapquest from Kansas to several of the larger Melanoma centers and Nashville seemed to be the closest which was 8.5 hours when driving. If there is a closer place I hope someone will speak up.  If you are flying then he would have choices like MDAnderson in Houston.

                Some of the most current trials are for people who have a specific B-raf mutation.  The estimate is 50% of metastic mel. patients have this mutations. The drug works on something like 65% of those with the mutation but right now it is not a durable response. There are also combo trials for B-raf and Mek. They are seeing good responses.  Nashville, Tenn has many of those trials. 

                Another test would be a blood test that would look at his hla factor.

                I don't personally have info on ippi but we have had some responders. The latest was Donna from Vermont who posted just the other day.  Your Doctor should be able to give you the info on Ippi. If it's not FDA approved then he would need to fail another treatment first.

                There is also IL2 which is FDA approved. Your dad's health would have to be fairly good. While it only has a low percentage of successes those who do respond have a chance of it being long term.

                Linda

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                lhaley
                Participant

                  I did a mapquest from Kansas to several of the larger Melanoma centers and Nashville seemed to be the closest which was 8.5 hours when driving. If there is a closer place I hope someone will speak up.  If you are flying then he would have choices like MDAnderson in Houston.

                  Some of the most current trials are for people who have a specific B-raf mutation.  The estimate is 50% of metastic mel. patients have this mutations. The drug works on something like 65% of those with the mutation but right now it is not a durable response. There are also combo trials for B-raf and Mek. They are seeing good responses.  Nashville, Tenn has many of those trials. 

                  Another test would be a blood test that would look at his hla factor.

                  I don't personally have info on ippi but we have had some responders. The latest was Donna from Vermont who posted just the other day.  Your Doctor should be able to give you the info on Ippi. If it's not FDA approved then he would need to fail another treatment first.

                  There is also IL2 which is FDA approved. Your dad's health would have to be fairly good. While it only has a low percentage of successes those who do respond have a chance of it being long term.

                  Linda

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                  was888
                  Participant

                    Thank you for your response Linda.  Yes my dad is seeing a melanoma specialist in Kansas City.  I guess my point was I know that many trials can only be done in specific locations.  We are able and willing to help him get to wherever he needs to go if that is his best option.

                    Having the tumor tested for B-raf, what info would that give us?  Are their specific treatments based upon this test?

                    I have done some reading about Ippi, do you have anymore info on this?

                    He has had a brain MRI done last week and that came back good.

                    I hope this extra info helps.

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                  lhaley
                  Participant

                    There are a few directions you could go. Is your dad seeing a melanoma specialist?  Where are you located?  While you say you are willing to travel there are different options and a lot would depend on where you live.  Traveling is not that easy if a trial is involved. Sometimes it is weekly.

                    Have your dad's tumor tested for B-raf mutations – that could take a few weeks.  Ippi is supposed to FDA approved this month (unless they are dragging their feet again). Your dad's health would also be a determining factor on choices.  Has he had a brain mri yet?

                    I hope when you post some additional info we can help you better.

                    Linda

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                    Fen
                    Participant

                      I'm so sorry about your dad's diagnosis.  There are many, many treatments and a good way to find out the basics would be to search the board.  There is a search tab (search the board, not mrf in general) right next to the "forum" tab.  You could try terms such as IL-2; ippi (or its full name – which of course I forget), B-raf, and complete lymph node dissection.

                      You might also want to look at clinicaltrials.gov.  Or you could contact MD Anderson and get a second opinion or suggestions from them.  You can refer yourself there.

                      I'm stage 3, so I'm not that familiar with the treatments for stage 4 – seems like there are lots of new ones out there and I hope you find one that works for your dad.

                      Fen

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                      Fen
                      Participant

                        I'm so sorry about your dad's diagnosis.  There are many, many treatments and a good way to find out the basics would be to search the board.  There is a search tab (search the board, not mrf in general) right next to the "forum" tab.  You could try terms such as IL-2; ippi (or its full name – which of course I forget), B-raf, and complete lymph node dissection.

                        You might also want to look at clinicaltrials.gov.  Or you could contact MD Anderson and get a second opinion or suggestions from them.  You can refer yourself there.

                        I'm stage 3, so I'm not that familiar with the treatments for stage 4 – seems like there are lots of new ones out there and I hope you find one that works for your dad.

                        Fen

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                        was888
                        Participant

                          My father has chosen to start biochemotherapy this week.  We are still waiting on the final results of his biopsy to determine if he tests positive for BRAF or CKIT.  The doctor did not feel he was healthy enough to just do IL-2, so they are going with biochemo which includes some IL-2.

                          He was supposed to start his first treatment today, but his kidney levels are not good and he has a high white blood cell count.  My father only has one functioning kidney at this time, the other one is the size of a peanut which happened years ago and was not related to his cancer.

                          His body is really puffed up and full of fluids right now.  If he can't handle biochemo what other options are there?  The doctor did state if he did not respond to the biochemo the next step was to move to IPPI.  He has to fail a treatment first before that will become an option.

                          Anyone with experience similar to this I would love to hear your thoughts.  Thank you in advance.

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                            ShariC
                            Participant

                              Good Luck!  I did BioChem over the winter.  It was brutal, but I had a good initial response (tumor I had shrunk to almost nothing).  I had 4 rounds, each with 5 days in the hospital.   In addition to the hospitalization, I had to have at least 10 days of at home care (a family member) because I was too weak to do anything.  In terms of side effects:  They manage you in the hospital (thowing up, the shakes, very low blood pressure) and then give you meds when you get home (more throwing up, didn't eat for about 6 more days, sores in my mouth, weakness).  Its just a very rough regiment and I didn't really feel like myself the whole time (even during the two weeks off) until about 5 or 6 weeks after I was done.  But, I'm back on my feet and hoping for a durable response.  I wouldn't change a thing.  Hope this helps.  Let me know if you have questions.  – Shari

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                              ShariC
                              Participant

                                Good Luck!  I did BioChem over the winter.  It was brutal, but I had a good initial response (tumor I had shrunk to almost nothing).  I had 4 rounds, each with 5 days in the hospital.   In addition to the hospitalization, I had to have at least 10 days of at home care (a family member) because I was too weak to do anything.  In terms of side effects:  They manage you in the hospital (thowing up, the shakes, very low blood pressure) and then give you meds when you get home (more throwing up, didn't eat for about 6 more days, sores in my mouth, weakness).  Its just a very rough regiment and I didn't really feel like myself the whole time (even during the two weeks off) until about 5 or 6 weeks after I was done.  But, I'm back on my feet and hoping for a durable response.  I wouldn't change a thing.  Hope this helps.  Let me know if you have questions.  – Shari

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                              was888
                              Participant

                                My father has chosen to start biochemotherapy this week.  We are still waiting on the final results of his biopsy to determine if he tests positive for BRAF or CKIT.  The doctor did not feel he was healthy enough to just do IL-2, so they are going with biochemo which includes some IL-2.

                                He was supposed to start his first treatment today, but his kidney levels are not good and he has a high white blood cell count.  My father only has one functioning kidney at this time, the other one is the size of a peanut which happened years ago and was not related to his cancer.

                                His body is really puffed up and full of fluids right now.  If he can't handle biochemo what other options are there?  The doctor did state if he did not respond to the biochemo the next step was to move to IPPI.  He has to fail a treatment first before that will become an option.

                                Anyone with experience similar to this I would love to hear your thoughts.  Thank you in advance.

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                                Sharyn
                                Participant

                                  Hi there,

                                  I'm presently in an ipi trial in Montreal. I did the first 12 weeks from Sept to Nov, and although some people experience side effects like diarrhea, itching, vertiligo, etc, I experienced absolutely NO side effects. Then came 12 weeks off.  I had a few sub-q tumours which are now all gone, and a lung tumour that reduced from 5.5cm to 3.3cm. Very impressive after just one round! However, I did have 4 brain mets radiated before starting ipi, and 2 more new ones showed up in a Dec CT scan, so I had to get those taken care of before resuming round 2 of ipi.

                                  I would suggest you go to http://www.clinicaltrials.org to see what trials your Dad would be eligible for, and ask your mel onc about the ones that you like.

                                  I am astounded that all these affected nodes showed up so quickly. Was there no evidence on his last PET scan 3 mos ago? That's quite a disease progression for a 3 month period!

                                  Anyway, good luck in finding an appropriate treatment — and soon!!

                                  Hugs

                                  Sharyn, Stage IV

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                                  Sharyn
                                  Participant

                                    Hi there,

                                    I'm presently in an ipi trial in Montreal. I did the first 12 weeks from Sept to Nov, and although some people experience side effects like diarrhea, itching, vertiligo, etc, I experienced absolutely NO side effects. Then came 12 weeks off.  I had a few sub-q tumours which are now all gone, and a lung tumour that reduced from 5.5cm to 3.3cm. Very impressive after just one round! However, I did have 4 brain mets radiated before starting ipi, and 2 more new ones showed up in a Dec CT scan, so I had to get those taken care of before resuming round 2 of ipi.

                                    I would suggest you go to http://www.clinicaltrials.org to see what trials your Dad would be eligible for, and ask your mel onc about the ones that you like.

                                    I am astounded that all these affected nodes showed up so quickly. Was there no evidence on his last PET scan 3 mos ago? That's quite a disease progression for a 3 month period!

                                    Anyway, good luck in finding an appropriate treatment — and soon!!

                                    Hugs

                                    Sharyn, Stage IV

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