› Forums › General Melanoma Community › Hello & any advice? (treatment decision)
- This topic has 24 replies, 6 voices, and was last updated 11 years, 2 months ago by
5374brian.
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- February 6, 2013 at 6:28 am
Hi everyone,
I am posting after a couple months of lurking to say hello and ask for any info/advice people have about a potential course of treatment for my father. Apologies in advance for a lengthy post, I just want to give a clear explanation of the situation.
Hi everyone,
I am posting after a couple months of lurking to say hello and ask for any info/advice people have about a potential course of treatment for my father. Apologies in advance for a lengthy post, I just want to give a clear explanation of the situation.
My father has been diagnosed as Stage III or maybe IV with a primary site on top of his head and a few positive nodes on one side of his neck and one positive node on the other side. We have met with several oncologists (we live in the San Francisco Bay Area so are lucky to have multiple options nearby) over the last several weeks and have gotten different opinions.
Our current question has to do with BRAF medication (Dad has the mutation). One oncologist indicated he might make the case that Dad’s cancer is Stage IV, given that he had infected nodes on both sides of his neck (which he felt could be argued as more than regional spread). If Dad is Stage IV, he can access Zelboraf without having to go into a trial. However, from reading online it seems like people try to wait to do BRAF treatment until it is absolutely necessary. The oncologist seems to think that Zelboraf may be able to more successfully fight microscopic cancer (similar to radiation?), but it does not appear any studies have been completed to make this claim. The lesser side effects of Zelboraf compared to interferon are obviously attractive; while my father is a healthy, active man in his late sixties, the point has been made that interferon can be quite difficult to sustain for older adults. So the question is: any information or advice on taking Zelboraf at this point?
Really, any thoughts about the situation would be appreciated. As you all know too well, entering the melanoma world is a shock. It’s been encouraging for my family to have found this board and seen valuable information and support provided by its members. We are wishing all of you the best!
Thanks much.
- Replies
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- February 6, 2013 at 12:11 pm
Zelboraf is a great medication, but usually only a temporary treatment (typically 6-10 months before the cancer comes back). Have they discussed Yervoy/Ipi? That is many times tried first with Someone with such a low tumor load. It only works on 20-30% (I think that’s the new statistics) of patients, but when it works, it can be long term and durable. Typically Zelboraf is “saved” until there is a really high tumor load and/or no other options. I’m not very familiar with stage 3 treatments (my husband has been stage 4 for a bit more than 2 years), but there may be some trials available. -
- February 6, 2013 at 12:11 pm
Zelboraf is a great medication, but usually only a temporary treatment (typically 6-10 months before the cancer comes back). Have they discussed Yervoy/Ipi? That is many times tried first with Someone with such a low tumor load. It only works on 20-30% (I think that’s the new statistics) of patients, but when it works, it can be long term and durable. Typically Zelboraf is “saved” until there is a really high tumor load and/or no other options. I’m not very familiar with stage 3 treatments (my husband has been stage 4 for a bit more than 2 years), but there may be some trials available.-
- February 6, 2013 at 12:45 pm
I agree completely with jmmm– since your father's tumor burden is low and is not in his brain, this would be a good time to try a longer-acting treatment like ipi. Anti-PD1 looks like it might be even better than ipi but it is still in clinical trials. So you could check around for clinical trials (for anti-PD1 as well as other things). And, lastly, I've heard that the FDA will soon approve both dabrafenib and MEK. The combination of a BRAF inhibitor plus a MEK inhibitor would be better than a BRAF inhibitor alone.
Did no oncologist recommend ipi/Yervoyo for your father? I would not be comfortable with an oncologist who recommended Zelboraf but did not discuss Yervoy. That seems to me like a strange treatment plan for a Stage III/IV patient unless your father has some unusual circumstance like having had a transplant or a pre-existing autoimmune disorder.
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- February 6, 2013 at 3:48 pm
Thanks for the input.The doctors we have met with all are melanoma specialists. Two of three oncologists we met with recommended other options (interferon; interferon or Zel) over ipi. I believe the concern was collitis, though I don’t think my dad had any health factors that make this especially a concern. Most doctors we have met with classified him as Stage IIIC, so his only access would have been through a trial where he might get the higher 10 arm. Thanks for the reminder though, I will bring ipi up again in our next meeting.
My understanding regarding the oncologist who brought up Zel at this point is that he thinks the drug may work better earlier/be able to overwhelm the cancer more long term when there is little or microscopic cancer. Because I haven’t read any studies on that or heard other people talking about it, it makes me kind of nervous.
Thanks again for the advice!
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- February 6, 2013 at 3:48 pm
Thanks for the input.The doctors we have met with all are melanoma specialists. Two of three oncologists we met with recommended other options (interferon; interferon or Zel) over ipi. I believe the concern was collitis, though I don’t think my dad had any health factors that make this especially a concern. Most doctors we have met with classified him as Stage IIIC, so his only access would have been through a trial where he might get the higher 10 arm. Thanks for the reminder though, I will bring ipi up again in our next meeting.
My understanding regarding the oncologist who brought up Zel at this point is that he thinks the drug may work better earlier/be able to overwhelm the cancer more long term when there is little or microscopic cancer. Because I haven’t read any studies on that or heard other people talking about it, it makes me kind of nervous.
Thanks again for the advice!
-
- February 6, 2013 at 3:48 pm
Thanks for the input.The doctors we have met with all are melanoma specialists. Two of three oncologists we met with recommended other options (interferon; interferon or Zel) over ipi. I believe the concern was collitis, though I don’t think my dad had any health factors that make this especially a concern. Most doctors we have met with classified him as Stage IIIC, so his only access would have been through a trial where he might get the higher 10 arm. Thanks for the reminder though, I will bring ipi up again in our next meeting.
My understanding regarding the oncologist who brought up Zel at this point is that he thinks the drug may work better earlier/be able to overwhelm the cancer more long term when there is little or microscopic cancer. Because I haven’t read any studies on that or heard other people talking about it, it makes me kind of nervous.
Thanks again for the advice!
-
- February 6, 2013 at 12:45 pm
I agree completely with jmmm– since your father's tumor burden is low and is not in his brain, this would be a good time to try a longer-acting treatment like ipi. Anti-PD1 looks like it might be even better than ipi but it is still in clinical trials. So you could check around for clinical trials (for anti-PD1 as well as other things). And, lastly, I've heard that the FDA will soon approve both dabrafenib and MEK. The combination of a BRAF inhibitor plus a MEK inhibitor would be better than a BRAF inhibitor alone.
Did no oncologist recommend ipi/Yervoyo for your father? I would not be comfortable with an oncologist who recommended Zelboraf but did not discuss Yervoy. That seems to me like a strange treatment plan for a Stage III/IV patient unless your father has some unusual circumstance like having had a transplant or a pre-existing autoimmune disorder.
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- February 6, 2013 at 12:45 pm
I agree completely with jmmm– since your father's tumor burden is low and is not in his brain, this would be a good time to try a longer-acting treatment like ipi. Anti-PD1 looks like it might be even better than ipi but it is still in clinical trials. So you could check around for clinical trials (for anti-PD1 as well as other things). And, lastly, I've heard that the FDA will soon approve both dabrafenib and MEK. The combination of a BRAF inhibitor plus a MEK inhibitor would be better than a BRAF inhibitor alone.
Did no oncologist recommend ipi/Yervoyo for your father? I would not be comfortable with an oncologist who recommended Zelboraf but did not discuss Yervoy. That seems to me like a strange treatment plan for a Stage III/IV patient unless your father has some unusual circumstance like having had a transplant or a pre-existing autoimmune disorder.
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- February 6, 2013 at 12:11 pm
Zelboraf is a great medication, but usually only a temporary treatment (typically 6-10 months before the cancer comes back). Have they discussed Yervoy/Ipi? That is many times tried first with Someone with such a low tumor load. It only works on 20-30% (I think that’s the new statistics) of patients, but when it works, it can be long term and durable. Typically Zelboraf is “saved” until there is a really high tumor load and/or no other options. I’m not very familiar with stage 3 treatments (my husband has been stage 4 for a bit more than 2 years), but there may be some trials available. -
- February 6, 2013 at 8:21 pm
Has your father had a PET scan or CT scans to check for distant spread?If these are clear, I would consider radiation to the region to clean ip any loose cell. I had radiation to the groin region. It was well tolerated, easy and has stopped any return of disease this area. Maybe someone can comment on radiation to the neck area.
Unfortunately, my disease has spread to other areas- bone and liver- I wonder if I had done the radiation sooner if maybe that wouldn’t have happened.
Just a thought,
Julie
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- February 6, 2013 at 10:52 pm
Hi,
A couple of things:
Just want to make sure you realize that Zelboraf is approved for IIIc patients.
Also, I’m not saying radiation is a bad choice, but head/neck radiation almost always has oral side-effects. I had it 2 years ago, my tongue is always white and sometimes I can barely swallow.
I am surprised a melanoma specialist would suggest interferon. My onc doesn’t even recommend it.
Hope this helps,
Karen -
- February 6, 2013 at 10:52 pm
Hi,
A couple of things:
Just want to make sure you realize that Zelboraf is approved for IIIc patients.
Also, I’m not saying radiation is a bad choice, but head/neck radiation almost always has oral side-effects. I had it 2 years ago, my tongue is always white and sometimes I can barely swallow.
I am surprised a melanoma specialist would suggest interferon. My onc doesn’t even recommend it.
Hope this helps,
Karen -
- February 6, 2013 at 10:52 pm
Hi,
A couple of things:
Just want to make sure you realize that Zelboraf is approved for IIIc patients.
Also, I’m not saying radiation is a bad choice, but head/neck radiation almost always has oral side-effects. I had it 2 years ago, my tongue is always white and sometimes I can barely swallow.
I am surprised a melanoma specialist would suggest interferon. My onc doesn’t even recommend it.
Hope this helps,
Karen -
- February 7, 2013 at 4:05 am
Karen and Julie, thanks for your thoughts.
Radiation was considered but the melanoma specialists we met with were not enthusiastic about it on the grounds that the depth of his primary (4.5mm) meant the cancer has already gone into his blood, so local radiation would only prevent local recurrence and not improve things elsewhere. The potential dry mouth, permanent neck stiffness, and other conditions that could result were also a deterrent.
My understanding of Zelboraf is that it is available for Stage III unresectable but that his cancer was resectable. His initial scan before surgery had shown no evidence of distant spread. He actually had a followup scan recently and we are meeting with his oncologist shortly to discuss results and plan treatment.
Thanks again!
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- February 7, 2013 at 4:05 am
Karen and Julie, thanks for your thoughts.
Radiation was considered but the melanoma specialists we met with were not enthusiastic about it on the grounds that the depth of his primary (4.5mm) meant the cancer has already gone into his blood, so local radiation would only prevent local recurrence and not improve things elsewhere. The potential dry mouth, permanent neck stiffness, and other conditions that could result were also a deterrent.
My understanding of Zelboraf is that it is available for Stage III unresectable but that his cancer was resectable. His initial scan before surgery had shown no evidence of distant spread. He actually had a followup scan recently and we are meeting with his oncologist shortly to discuss results and plan treatment.
Thanks again!
-
- February 7, 2013 at 4:05 am
Karen and Julie, thanks for your thoughts.
Radiation was considered but the melanoma specialists we met with were not enthusiastic about it on the grounds that the depth of his primary (4.5mm) meant the cancer has already gone into his blood, so local radiation would only prevent local recurrence and not improve things elsewhere. The potential dry mouth, permanent neck stiffness, and other conditions that could result were also a deterrent.
My understanding of Zelboraf is that it is available for Stage III unresectable but that his cancer was resectable. His initial scan before surgery had shown no evidence of distant spread. He actually had a followup scan recently and we are meeting with his oncologist shortly to discuss results and plan treatment.
Thanks again!
-
- February 6, 2013 at 8:21 pm
Has your father had a PET scan or CT scans to check for distant spread?If these are clear, I would consider radiation to the region to clean ip any loose cell. I had radiation to the groin region. It was well tolerated, easy and has stopped any return of disease this area. Maybe someone can comment on radiation to the neck area.
Unfortunately, my disease has spread to other areas- bone and liver- I wonder if I had done the radiation sooner if maybe that wouldn’t have happened.
Just a thought,
Julie
-
- February 6, 2013 at 8:21 pm
Has your father had a PET scan or CT scans to check for distant spread?If these are clear, I would consider radiation to the region to clean ip any loose cell. I had radiation to the groin region. It was well tolerated, easy and has stopped any return of disease this area. Maybe someone can comment on radiation to the neck area.
Unfortunately, my disease has spread to other areas- bone and liver- I wonder if I had done the radiation sooner if maybe that wouldn’t have happened.
Just a thought,
Julie
-
- February 7, 2013 at 4:15 am
You are doing the right thing by asking on this forum. This has been great for my wife and I . We don't post much but read and get much information weekly from everyone here. My wife had her 2nd ipi treatment on Tuesday Feb 5th. Very minor side effects mostly fatigue and easily awaken at night. We discussed with Moffitt and are trying melatonin before getting a prescription. She was diagnosed Dec 7 with stage 4 melanoma . We wish you the best.
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- February 7, 2013 at 4:15 am
You are doing the right thing by asking on this forum. This has been great for my wife and I . We don't post much but read and get much information weekly from everyone here. My wife had her 2nd ipi treatment on Tuesday Feb 5th. Very minor side effects mostly fatigue and easily awaken at night. We discussed with Moffitt and are trying melatonin before getting a prescription. She was diagnosed Dec 7 with stage 4 melanoma . We wish you the best.
-
- February 7, 2013 at 4:15 am
You are doing the right thing by asking on this forum. This has been great for my wife and I . We don't post much but read and get much information weekly from everyone here. My wife had her 2nd ipi treatment on Tuesday Feb 5th. Very minor side effects mostly fatigue and easily awaken at night. We discussed with Moffitt and are trying melatonin before getting a prescription. She was diagnosed Dec 7 with stage 4 melanoma . We wish you the best.
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