› Forums › General Melanoma Community › No Surgery? Time For Treatment?
- This topic has 51 replies, 11 voices, and was last updated 11 years ago by
MattF.
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- November 22, 2013 at 2:49 am
Well the medical oncologist just emailed me …
after PET scan had found 2 hypermetabolic nodes and 4 suspisious bone foci
I was ready to have my surgery team go for surgery of the nodes in neck (2nd dissection)
but the oncologist said he thinks surgery will not be any benifit and just more trauma on area. he said there were enough "other" things on PET to suggest metastasis….thicking of pituitary stalk, multiple bone foci and two lymph nodes.
He wants me to come in asap and go over what course of systemic treatment is best. He leans toward the BRAF Inhibitors….
Thoughts?
- Replies
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- November 22, 2013 at 3:17 am
H-m-m-m. That's a tough one!
My first thought was: shouldn't they at least biopsy one of these "suspicious" areas and make sure it is melanoma before going to a systemic treatment? My second thought was: this might be a good time to go with a systemic treatment. Your tumor burden is low to nil. There is a good possibility that a systemic treatment now would prevent you from progressing. If you were NED you would have a hard time getting a systemic treatment so this might be a golden opportunity for you. You're going to have to talk to your oncologist and think carefully about your choices.
I do wonder why the oncologist would recommend a BRAF inhibitor. They're great for quickly shriking life-threatening tumors but their effect is usually temporary. Wouldn't you be better off with an immunothearpy like Yervoy or anti-PD1? Are there any anti-PD1 trials you could get into? More questions for you and your doc to discuss.
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- November 22, 2013 at 3:17 am
H-m-m-m. That's a tough one!
My first thought was: shouldn't they at least biopsy one of these "suspicious" areas and make sure it is melanoma before going to a systemic treatment? My second thought was: this might be a good time to go with a systemic treatment. Your tumor burden is low to nil. There is a good possibility that a systemic treatment now would prevent you from progressing. If you were NED you would have a hard time getting a systemic treatment so this might be a golden opportunity for you. You're going to have to talk to your oncologist and think carefully about your choices.
I do wonder why the oncologist would recommend a BRAF inhibitor. They're great for quickly shriking life-threatening tumors but their effect is usually temporary. Wouldn't you be better off with an immunothearpy like Yervoy or anti-PD1? Are there any anti-PD1 trials you could get into? More questions for you and your doc to discuss.
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- November 22, 2013 at 3:17 am
H-m-m-m. That's a tough one!
My first thought was: shouldn't they at least biopsy one of these "suspicious" areas and make sure it is melanoma before going to a systemic treatment? My second thought was: this might be a good time to go with a systemic treatment. Your tumor burden is low to nil. There is a good possibility that a systemic treatment now would prevent you from progressing. If you were NED you would have a hard time getting a systemic treatment so this might be a golden opportunity for you. You're going to have to talk to your oncologist and think carefully about your choices.
I do wonder why the oncologist would recommend a BRAF inhibitor. They're great for quickly shriking life-threatening tumors but their effect is usually temporary. Wouldn't you be better off with an immunothearpy like Yervoy or anti-PD1? Are there any anti-PD1 trials you could get into? More questions for you and your doc to discuss.
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- November 22, 2013 at 3:39 am
Hey Matt,
I'm assuming since you had question marks in your thread title that you might be looking for thoughts so I'll give my 2 cents for what it's worth. I agree with Pat. Braf inhibitors are great for those with a high tumor burden and have time working against them because it is fast acting and can give you a reset in most cases for a short to intermediate timeframe. It's also something you can have prescribed at anytime so I think my first move would be to try and get into the most promising clinical trial of anti-PD1 I could find. If you are having trouble finding one you might reach out to Catherine at MIF. She's a great resource for PD-1 trials.
Sorry to hear about your new status. I would love to be NED again myself but in some ways I like being able to see this beast when I'm fighting it. Best of luck to you in the next few days.
Brian
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- November 22, 2013 at 4:05 pm
I've seen it twice in the literature ( most recently in one of the videos that Jerry sent a link to from Tampa) that there is a growing evidence that sequencing a B-raf inhibitor before Ipilimumabab will reduce the likelihood that Ipilimumabab will be effective. Sequencing the other way (Ipi first) doesn't seem to change the effectiveness of the B-raf inhibitor. If you don't need to shrink the tumors immediately — based on those reports– I would think that Ipi and anti-PD1 would be the first line defense– with B-raf inhibitor in the wings.
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- November 22, 2013 at 4:05 pm
I've seen it twice in the literature ( most recently in one of the videos that Jerry sent a link to from Tampa) that there is a growing evidence that sequencing a B-raf inhibitor before Ipilimumabab will reduce the likelihood that Ipilimumabab will be effective. Sequencing the other way (Ipi first) doesn't seem to change the effectiveness of the B-raf inhibitor. If you don't need to shrink the tumors immediately — based on those reports– I would think that Ipi and anti-PD1 would be the first line defense– with B-raf inhibitor in the wings.
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- November 22, 2013 at 4:05 pm
I've seen it twice in the literature ( most recently in one of the videos that Jerry sent a link to from Tampa) that there is a growing evidence that sequencing a B-raf inhibitor before Ipilimumabab will reduce the likelihood that Ipilimumabab will be effective. Sequencing the other way (Ipi first) doesn't seem to change the effectiveness of the B-raf inhibitor. If you don't need to shrink the tumors immediately — based on those reports– I would think that Ipi and anti-PD1 would be the first line defense– with B-raf inhibitor in the wings.
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- November 22, 2013 at 3:39 am
Hey Matt,
I'm assuming since you had question marks in your thread title that you might be looking for thoughts so I'll give my 2 cents for what it's worth. I agree with Pat. Braf inhibitors are great for those with a high tumor burden and have time working against them because it is fast acting and can give you a reset in most cases for a short to intermediate timeframe. It's also something you can have prescribed at anytime so I think my first move would be to try and get into the most promising clinical trial of anti-PD1 I could find. If you are having trouble finding one you might reach out to Catherine at MIF. She's a great resource for PD-1 trials.
Sorry to hear about your new status. I would love to be NED again myself but in some ways I like being able to see this beast when I'm fighting it. Best of luck to you in the next few days.
Brian
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- November 22, 2013 at 3:39 am
Hey Matt,
I'm assuming since you had question marks in your thread title that you might be looking for thoughts so I'll give my 2 cents for what it's worth. I agree with Pat. Braf inhibitors are great for those with a high tumor burden and have time working against them because it is fast acting and can give you a reset in most cases for a short to intermediate timeframe. It's also something you can have prescribed at anytime so I think my first move would be to try and get into the most promising clinical trial of anti-PD1 I could find. If you are having trouble finding one you might reach out to Catherine at MIF. She's a great resource for PD-1 trials.
Sorry to hear about your new status. I would love to be NED again myself but in some ways I like being able to see this beast when I'm fighting it. Best of luck to you in the next few days.
Brian
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- November 22, 2013 at 8:09 pm
Certainly a lot to think about… and a challenging thing to be deciding. I had ALWAYS opted for surgery when it was an option — even beyond what the Drs thought best because they wanted to do systemic treatment. But, the day came when doing surgery was not the best option — I had areas showing up in several locations ( not unlike what you may be seeing now) and it became evident that doing surgery would not "fix" things even temporarily. That was a hard one for me to get my head around, but I did make the decision then for systemic treatment..it was time for me. I did manage to get by with surgeries ( lots of them) for 7 years and it was hard to think of changing gears. My suggestion would be this… perhaps you can see another mel specialist just to toss the options around with another voice, another head of knowledge and experience. That way you feel like you have as much info as you can going into such a tough decision. As for WHICH systemic treatment…that is one of the things I would toss around with them. BRAF, while it was very tough on me, did get me a complete reset for a time, then allowing me to take the slower acting ipi, and now I am in the PD1 trial. It is a very personal choice and you have to make the decision you are at peace with. Just my little input.
Best wishes to you as you as you navigate this road…
Tina
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- November 22, 2013 at 8:09 pm
Certainly a lot to think about… and a challenging thing to be deciding. I had ALWAYS opted for surgery when it was an option — even beyond what the Drs thought best because they wanted to do systemic treatment. But, the day came when doing surgery was not the best option — I had areas showing up in several locations ( not unlike what you may be seeing now) and it became evident that doing surgery would not "fix" things even temporarily. That was a hard one for me to get my head around, but I did make the decision then for systemic treatment..it was time for me. I did manage to get by with surgeries ( lots of them) for 7 years and it was hard to think of changing gears. My suggestion would be this… perhaps you can see another mel specialist just to toss the options around with another voice, another head of knowledge and experience. That way you feel like you have as much info as you can going into such a tough decision. As for WHICH systemic treatment…that is one of the things I would toss around with them. BRAF, while it was very tough on me, did get me a complete reset for a time, then allowing me to take the slower acting ipi, and now I am in the PD1 trial. It is a very personal choice and you have to make the decision you are at peace with. Just my little input.
Best wishes to you as you as you navigate this road…
Tina
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- November 22, 2013 at 8:09 pm
Certainly a lot to think about… and a challenging thing to be deciding. I had ALWAYS opted for surgery when it was an option — even beyond what the Drs thought best because they wanted to do systemic treatment. But, the day came when doing surgery was not the best option — I had areas showing up in several locations ( not unlike what you may be seeing now) and it became evident that doing surgery would not "fix" things even temporarily. That was a hard one for me to get my head around, but I did make the decision then for systemic treatment..it was time for me. I did manage to get by with surgeries ( lots of them) for 7 years and it was hard to think of changing gears. My suggestion would be this… perhaps you can see another mel specialist just to toss the options around with another voice, another head of knowledge and experience. That way you feel like you have as much info as you can going into such a tough decision. As for WHICH systemic treatment…that is one of the things I would toss around with them. BRAF, while it was very tough on me, did get me a complete reset for a time, then allowing me to take the slower acting ipi, and now I am in the PD1 trial. It is a very personal choice and you have to make the decision you are at peace with. Just my little input.
Best wishes to you as you as you navigate this road…
Tina
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- November 23, 2013 at 3:30 pm
Thank you all
Went over items with Mel Onc yesterday.
he thinks there is just too much on the PET CT to rule out Met Mel. there would be too many coincidences if all 7 spots (including 2 nodes, 4 bone, 1 pituitary stalk) He really did think having surgery for the two nodes will give4 the melanoma 8 weeks to run free in other areas not getting treated while lymph nodes are being removed.
as far as treatments
there are two anti pd1 trials but my disease is not quite measurable enough, and with the thickening of pituitary stalk he must rule out brain met with mri of the pituitary to be eligible for trials.
rather than try and wait for something he thinks starting
Trafinlar and Mekinist now
us it as long as it works.
then we can reasses trials and standard treatments at a later time… Anti PD1, IL-2, Ipi, etc
I think we both wanted Anti PD1 but we also know there is a risk with brain involvment and trial and size of tumors so he and I are going with the best option right now….not waiting for anything.
Matt
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- November 23, 2013 at 3:30 pm
Thank you all
Went over items with Mel Onc yesterday.
he thinks there is just too much on the PET CT to rule out Met Mel. there would be too many coincidences if all 7 spots (including 2 nodes, 4 bone, 1 pituitary stalk) He really did think having surgery for the two nodes will give4 the melanoma 8 weeks to run free in other areas not getting treated while lymph nodes are being removed.
as far as treatments
there are two anti pd1 trials but my disease is not quite measurable enough, and with the thickening of pituitary stalk he must rule out brain met with mri of the pituitary to be eligible for trials.
rather than try and wait for something he thinks starting
Trafinlar and Mekinist now
us it as long as it works.
then we can reasses trials and standard treatments at a later time… Anti PD1, IL-2, Ipi, etc
I think we both wanted Anti PD1 but we also know there is a risk with brain involvment and trial and size of tumors so he and I are going with the best option right now….not waiting for anything.
Matt
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- November 23, 2013 at 6:13 pm
Jeeze, Matt, I'm in a really awkward position here. On the one hand, I am a firm believer in the philosophy that none of us has a crystal ball. Nobody knows what treatment will work in which patient for how long. All we can do is make the best decision we can with the information we have at the time and never look back. And that would definitely apply to you taking Trafinlar + Mekininst now.
On the other hand, once or twice in the past a patient has made a decision that I thought was a mistake but I kept my mouth shut as per #1 above. Things didn't turn out well and I felt guilty for not speaking up when I had the chance. I'm certainly not God– I'm not even a doctor– but in this case I would strongly advise you to get a second opinion before committing to any course of treatment. Maybe you could go back to MD Anderson for a second opinion since they already know you and your history.
What is concerning me is all the "maybes" you say that your oncologist talked about. "Maybe" these lesions are melanoma. "Maybe" there are brain tumors. "Maybe" your melanoma would progress too fast for an immunotherapy to work (while simultaneously saying that you don't have any tumors large enough to assess treatment effectiveness).
Yes, having a tumor (if such it is) on the pituitary is scary because the pituitary is located directly underneath the brain– that makes one worry about possible brain tumors. Perhaps there are other even more serious dangers associated with having a tumor on the pituitary gland. I don't know. But it seems to me that a high-resolution MRI with and without contrast would answer a lot of major questions here. Getting such a scan in a couple of weeks might also give you and your doctor a better measure of how rapidly your melanoma is or is not growing. You and your doctor would then have better information with which to make your treatment decisions.
I am also concerned that City of Hope does not seem to be participating in any clinical trials of anti-PD1 or any other immune-based treatments for melanoma. I have to wonder if your oncologist would be more enthsiastic about you participating in an anti-PD1 clinical trial if the guy down the hall was doing one.
As always, there are no "right" or "wrong" choices here. If your gut tells you that starting Trafinlar + Mekininst now is the best thing to do, by all means, do so. But if you, too, are uncomfortable about all the "maybes", perhaps you could wait long enough to get a second opinion before deciding.
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- November 23, 2013 at 6:13 pm
Jeeze, Matt, I'm in a really awkward position here. On the one hand, I am a firm believer in the philosophy that none of us has a crystal ball. Nobody knows what treatment will work in which patient for how long. All we can do is make the best decision we can with the information we have at the time and never look back. And that would definitely apply to you taking Trafinlar + Mekininst now.
On the other hand, once or twice in the past a patient has made a decision that I thought was a mistake but I kept my mouth shut as per #1 above. Things didn't turn out well and I felt guilty for not speaking up when I had the chance. I'm certainly not God– I'm not even a doctor– but in this case I would strongly advise you to get a second opinion before committing to any course of treatment. Maybe you could go back to MD Anderson for a second opinion since they already know you and your history.
What is concerning me is all the "maybes" you say that your oncologist talked about. "Maybe" these lesions are melanoma. "Maybe" there are brain tumors. "Maybe" your melanoma would progress too fast for an immunotherapy to work (while simultaneously saying that you don't have any tumors large enough to assess treatment effectiveness).
Yes, having a tumor (if such it is) on the pituitary is scary because the pituitary is located directly underneath the brain– that makes one worry about possible brain tumors. Perhaps there are other even more serious dangers associated with having a tumor on the pituitary gland. I don't know. But it seems to me that a high-resolution MRI with and without contrast would answer a lot of major questions here. Getting such a scan in a couple of weeks might also give you and your doctor a better measure of how rapidly your melanoma is or is not growing. You and your doctor would then have better information with which to make your treatment decisions.
I am also concerned that City of Hope does not seem to be participating in any clinical trials of anti-PD1 or any other immune-based treatments for melanoma. I have to wonder if your oncologist would be more enthsiastic about you participating in an anti-PD1 clinical trial if the guy down the hall was doing one.
As always, there are no "right" or "wrong" choices here. If your gut tells you that starting Trafinlar + Mekininst now is the best thing to do, by all means, do so. But if you, too, are uncomfortable about all the "maybes", perhaps you could wait long enough to get a second opinion before deciding.
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- November 23, 2013 at 6:13 pm
Jeeze, Matt, I'm in a really awkward position here. On the one hand, I am a firm believer in the philosophy that none of us has a crystal ball. Nobody knows what treatment will work in which patient for how long. All we can do is make the best decision we can with the information we have at the time and never look back. And that would definitely apply to you taking Trafinlar + Mekininst now.
On the other hand, once or twice in the past a patient has made a decision that I thought was a mistake but I kept my mouth shut as per #1 above. Things didn't turn out well and I felt guilty for not speaking up when I had the chance. I'm certainly not God– I'm not even a doctor– but in this case I would strongly advise you to get a second opinion before committing to any course of treatment. Maybe you could go back to MD Anderson for a second opinion since they already know you and your history.
What is concerning me is all the "maybes" you say that your oncologist talked about. "Maybe" these lesions are melanoma. "Maybe" there are brain tumors. "Maybe" your melanoma would progress too fast for an immunotherapy to work (while simultaneously saying that you don't have any tumors large enough to assess treatment effectiveness).
Yes, having a tumor (if such it is) on the pituitary is scary because the pituitary is located directly underneath the brain– that makes one worry about possible brain tumors. Perhaps there are other even more serious dangers associated with having a tumor on the pituitary gland. I don't know. But it seems to me that a high-resolution MRI with and without contrast would answer a lot of major questions here. Getting such a scan in a couple of weeks might also give you and your doctor a better measure of how rapidly your melanoma is or is not growing. You and your doctor would then have better information with which to make your treatment decisions.
I am also concerned that City of Hope does not seem to be participating in any clinical trials of anti-PD1 or any other immune-based treatments for melanoma. I have to wonder if your oncologist would be more enthsiastic about you participating in an anti-PD1 clinical trial if the guy down the hall was doing one.
As always, there are no "right" or "wrong" choices here. If your gut tells you that starting Trafinlar + Mekininst now is the best thing to do, by all means, do so. But if you, too, are uncomfortable about all the "maybes", perhaps you could wait long enough to get a second opinion before deciding.
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- November 23, 2013 at 7:33 pm
POW
I totall;y get your messege.
I'm actually doing Treatment with UCLA Dr Bartozs Chmielowski, Dr. Antoni Ribas, Dr Paul Tumeh (Derm) and Dr. Lo (Derm)
I only really have a surgical team at City Of Hope Dr Ellie Maghami and a back up Med Onc Dr. Warren Chow for just the reasons you stated.
1.MRI of Pituitary Stalk (part that showed uptake of FDG) is being set.
2.Meet with City Of Hope On Tues after they analyzed PET-CT for surgery / treatment see if they have a plan. (i understand your second opinion and think we bounce things off UCLA and City Of Hope..I still call MD Anderson but I was never in the Melanoma Dept there and still only had a head and neck surgeion because to them my stage 2 mel was removed so you dont get a Mel doc until you progress)
3. RX for Tal+MEK is in. (but obviously everything can be changed)
UCLA does have PD1 trials….just to be honest I dont quite fit in them.
Now i do know they may have additional trials at MD Anderson my real question is would they recommedn waiting to get into one of those trials…or trying Ipi or Tal+Mek before trial.
I really have no interest in trying to wait to get in a PD1 trial….treat now would be my motto. My doctor and I talked about still having options with PD1, IL-2, and Ipi as well as possibly even more or different BRAF. I understand there may be startegy as to how we execute these treatments.
So the real question to me is Ipi now or BRAF now?….since I really am uncomfortable with taking no action in hopes of a trial.
I know i ramble a lot but it is a big decision.
thanks all for thought and opinions…I take all of them in and try to build a big picture to make decisions.
Matt
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- November 23, 2013 at 7:33 pm
POW
I totall;y get your messege.
I'm actually doing Treatment with UCLA Dr Bartozs Chmielowski, Dr. Antoni Ribas, Dr Paul Tumeh (Derm) and Dr. Lo (Derm)
I only really have a surgical team at City Of Hope Dr Ellie Maghami and a back up Med Onc Dr. Warren Chow for just the reasons you stated.
1.MRI of Pituitary Stalk (part that showed uptake of FDG) is being set.
2.Meet with City Of Hope On Tues after they analyzed PET-CT for surgery / treatment see if they have a plan. (i understand your second opinion and think we bounce things off UCLA and City Of Hope..I still call MD Anderson but I was never in the Melanoma Dept there and still only had a head and neck surgeion because to them my stage 2 mel was removed so you dont get a Mel doc until you progress)
3. RX for Tal+MEK is in. (but obviously everything can be changed)
UCLA does have PD1 trials….just to be honest I dont quite fit in them.
Now i do know they may have additional trials at MD Anderson my real question is would they recommedn waiting to get into one of those trials…or trying Ipi or Tal+Mek before trial.
I really have no interest in trying to wait to get in a PD1 trial….treat now would be my motto. My doctor and I talked about still having options with PD1, IL-2, and Ipi as well as possibly even more or different BRAF. I understand there may be startegy as to how we execute these treatments.
So the real question to me is Ipi now or BRAF now?….since I really am uncomfortable with taking no action in hopes of a trial.
I know i ramble a lot but it is a big decision.
thanks all for thought and opinions…I take all of them in and try to build a big picture to make decisions.
Matt
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- November 23, 2013 at 10:52 pm
Hey Matt,
Sounds like you are really thinking it through and coming up with a good plan. I feel for you because it really is a tough decision. I'm a take action kind of guy also so I can relate to how you feel. Great points by Pat and just shows why this site is such a great resource. Best of luck and keep us updated. You'll definitely be in my prayers.
Brian
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- November 23, 2013 at 10:52 pm
Hey Matt,
Sounds like you are really thinking it through and coming up with a good plan. I feel for you because it really is a tough decision. I'm a take action kind of guy also so I can relate to how you feel. Great points by Pat and just shows why this site is such a great resource. Best of luck and keep us updated. You'll definitely be in my prayers.
Brian
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- November 23, 2013 at 10:52 pm
Hey Matt,
Sounds like you are really thinking it through and coming up with a good plan. I feel for you because it really is a tough decision. I'm a take action kind of guy also so I can relate to how you feel. Great points by Pat and just shows why this site is such a great resource. Best of luck and keep us updated. You'll definitely be in my prayers.
Brian
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- November 24, 2013 at 1:47 am
Matt – some people try BRAF for a couple of months to knock down the tumor burden, then do Ipi before the BRAF fails. You can always go back to BRAF. This is what I did. It was a little complicated but I am still here, a year later. Honestly I leave all the strategizing to my oncologist and I try to research and understand as best I can. Wishing you peace with your decision.
Amy
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- November 24, 2013 at 1:47 am
Matt – some people try BRAF for a couple of months to knock down the tumor burden, then do Ipi before the BRAF fails. You can always go back to BRAF. This is what I did. It was a little complicated but I am still here, a year later. Honestly I leave all the strategizing to my oncologist and I try to research and understand as best I can. Wishing you peace with your decision.
Amy
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- November 24, 2013 at 1:47 am
Matt – some people try BRAF for a couple of months to knock down the tumor burden, then do Ipi before the BRAF fails. You can always go back to BRAF. This is what I did. It was a little complicated but I am still here, a year later. Honestly I leave all the strategizing to my oncologist and I try to research and understand as best I can. Wishing you peace with your decision.
Amy
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- November 25, 2013 at 3:41 am
I agree with Amy, except that your tumor burden doesn't seem to be that high. Perhaps your doctor is thinking that the GSK combo will act on your pituitary stalk? The GSK combo has shown evidence of working on brain mets. The combo shrunk a brain met in me by 50% in 2 weeks (at which point I had it gamma-knifed). That said, for most patients, the combo (or any targeted therapy) should be viewed as a bridge treatment as Amy noted.
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- November 25, 2013 at 3:41 am
I agree with Amy, except that your tumor burden doesn't seem to be that high. Perhaps your doctor is thinking that the GSK combo will act on your pituitary stalk? The GSK combo has shown evidence of working on brain mets. The combo shrunk a brain met in me by 50% in 2 weeks (at which point I had it gamma-knifed). That said, for most patients, the combo (or any targeted therapy) should be viewed as a bridge treatment as Amy noted.
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- November 25, 2013 at 3:41 am
I agree with Amy, except that your tumor burden doesn't seem to be that high. Perhaps your doctor is thinking that the GSK combo will act on your pituitary stalk? The GSK combo has shown evidence of working on brain mets. The combo shrunk a brain met in me by 50% in 2 weeks (at which point I had it gamma-knifed). That said, for most patients, the combo (or any targeted therapy) should be viewed as a bridge treatment as Amy noted.
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- November 24, 2013 at 1:39 pm
Thanks, Matt. I'm feeling very reassured. It sounds like you really are thinking things through and crystallizing your own desires and priorities. Wonderful!
The most important points I get from your post are: 1) you are getting a second opinion, and perhaps even a third opinion, from well-qualified melanoma specialists, 2) you have scheduled an MRI to look more closely at what's going on with your pituitatry, and 3) you already know that you don't qualify for the clinical trials you know about but you are willing to consider other clinical trials that may be suggested. Lastly and most importantly, you have decided in your heart that you do NOT want to wait for treatment. You especially don't want to wait for a clinical trial that MIGHT become available to you in the future.
Your thinking is well informed and very clear. I no longer worry about you being stampeded into a premature decision. As you say, you have really simplified your decision down to ipi versus BRAF. I expect that you will be comfortable making that choice once you get the results of the MRI and then confer with your doctors. Keep us posted!
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- November 24, 2013 at 1:39 pm
Thanks, Matt. I'm feeling very reassured. It sounds like you really are thinking things through and crystallizing your own desires and priorities. Wonderful!
The most important points I get from your post are: 1) you are getting a second opinion, and perhaps even a third opinion, from well-qualified melanoma specialists, 2) you have scheduled an MRI to look more closely at what's going on with your pituitatry, and 3) you already know that you don't qualify for the clinical trials you know about but you are willing to consider other clinical trials that may be suggested. Lastly and most importantly, you have decided in your heart that you do NOT want to wait for treatment. You especially don't want to wait for a clinical trial that MIGHT become available to you in the future.
Your thinking is well informed and very clear. I no longer worry about you being stampeded into a premature decision. As you say, you have really simplified your decision down to ipi versus BRAF. I expect that you will be comfortable making that choice once you get the results of the MRI and then confer with your doctors. Keep us posted!
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- November 24, 2013 at 1:39 pm
Thanks, Matt. I'm feeling very reassured. It sounds like you really are thinking things through and crystallizing your own desires and priorities. Wonderful!
The most important points I get from your post are: 1) you are getting a second opinion, and perhaps even a third opinion, from well-qualified melanoma specialists, 2) you have scheduled an MRI to look more closely at what's going on with your pituitatry, and 3) you already know that you don't qualify for the clinical trials you know about but you are willing to consider other clinical trials that may be suggested. Lastly and most importantly, you have decided in your heart that you do NOT want to wait for treatment. You especially don't want to wait for a clinical trial that MIGHT become available to you in the future.
Your thinking is well informed and very clear. I no longer worry about you being stampeded into a premature decision. As you say, you have really simplified your decision down to ipi versus BRAF. I expect that you will be comfortable making that choice once you get the results of the MRI and then confer with your doctors. Keep us posted!
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- November 24, 2013 at 9:52 pm
Matt,
If you end up having something going on with the pituitary, I would recommend Dr. Ian McCutcheon at MD Anderson. He did my pituitary surgery and he is absolutely wonderful.
Good luck to you in navigating this maze. I know it is difficult.
Susan
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- November 24, 2013 at 9:52 pm
Matt,
If you end up having something going on with the pituitary, I would recommend Dr. Ian McCutcheon at MD Anderson. He did my pituitary surgery and he is absolutely wonderful.
Good luck to you in navigating this maze. I know it is difficult.
Susan
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- November 24, 2013 at 9:52 pm
Matt,
If you end up having something going on with the pituitary, I would recommend Dr. Ian McCutcheon at MD Anderson. He did my pituitary surgery and he is absolutely wonderful.
Good luck to you in navigating this maze. I know it is difficult.
Susan
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- November 23, 2013 at 7:33 pm
POW
I totall;y get your messege.
I'm actually doing Treatment with UCLA Dr Bartozs Chmielowski, Dr. Antoni Ribas, Dr Paul Tumeh (Derm) and Dr. Lo (Derm)
I only really have a surgical team at City Of Hope Dr Ellie Maghami and a back up Med Onc Dr. Warren Chow for just the reasons you stated.
1.MRI of Pituitary Stalk (part that showed uptake of FDG) is being set.
2.Meet with City Of Hope On Tues after they analyzed PET-CT for surgery / treatment see if they have a plan. (i understand your second opinion and think we bounce things off UCLA and City Of Hope..I still call MD Anderson but I was never in the Melanoma Dept there and still only had a head and neck surgeion because to them my stage 2 mel was removed so you dont get a Mel doc until you progress)
3. RX for Tal+MEK is in. (but obviously everything can be changed)
UCLA does have PD1 trials….just to be honest I dont quite fit in them.
Now i do know they may have additional trials at MD Anderson my real question is would they recommedn waiting to get into one of those trials…or trying Ipi or Tal+Mek before trial.
I really have no interest in trying to wait to get in a PD1 trial….treat now would be my motto. My doctor and I talked about still having options with PD1, IL-2, and Ipi as well as possibly even more or different BRAF. I understand there may be startegy as to how we execute these treatments.
So the real question to me is Ipi now or BRAF now?….since I really am uncomfortable with taking no action in hopes of a trial.
I know i ramble a lot but it is a big decision.
thanks all for thought and opinions…I take all of them in and try to build a big picture to make decisions.
Matt
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- November 23, 2013 at 3:30 pm
Thank you all
Went over items with Mel Onc yesterday.
he thinks there is just too much on the PET CT to rule out Met Mel. there would be too many coincidences if all 7 spots (including 2 nodes, 4 bone, 1 pituitary stalk) He really did think having surgery for the two nodes will give4 the melanoma 8 weeks to run free in other areas not getting treated while lymph nodes are being removed.
as far as treatments
there are two anti pd1 trials but my disease is not quite measurable enough, and with the thickening of pituitary stalk he must rule out brain met with mri of the pituitary to be eligible for trials.
rather than try and wait for something he thinks starting
Trafinlar and Mekinist now
us it as long as it works.
then we can reasses trials and standard treatments at a later time… Anti PD1, IL-2, Ipi, etc
I think we both wanted Anti PD1 but we also know there is a risk with brain involvment and trial and size of tumors so he and I are going with the best option right now….not waiting for anything.
Matt
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