› Forums › General Melanoma Community › A new curveball
- This topic has 42 replies, 8 voices, and was last updated 8 years, 8 months ago by
WithinMySkin.
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- March 30, 2016 at 9:31 pm
Hello friends and fellow warriors! My onc just threw me a serious curveball, and I would love your input.
Quick history: April 2015 diagnosed stage IIIB, 2.1mm primary on thigh, >2 mitosis, BRAF+, with ulceration. SLNB positive 1/2 nodes. Decided to watch and wait.
November 2015 found In-transit on leg. Stage IIIC. CLND showed 6/30 nodes positive, 2 "grossly positive" with extracapsular extension. Started Sylatron.
March scan showed 2 possible in-transits on same leg, everything else clear. Watching the in-transits.
So I've been watching the in-transits, and one has been growing. Just met with the Onc, thinking of dropping the Sylatron and going to Ipi at 10 mg. (Because clearly, the Sylatron isn't doing its job). But he really shocked me when he said we COULD leave the in-transits and go to the Ipi/Anti-PD-1 combo. I get the jist that he is being extremely liberal with the phrase "unresected" stage III, and giving me a balls-to-the-wall option. I clearly hadn't though of this as a treatment option, because I've only had leg and nearby node involvement so far, so this is a whole new world for me.
SO, what to do?!? My options: 1- have the in-transits resected and go back to watch and wait. 2- go to Ipi 10 mg and have the in-transit resected 3- leave the in-transits, and go guns a blazing with the Ipi/Anti-PD-1 combo. Clearly, the side effect profile for the combo will be greater than the Ipi alone, and greater still than the watch and wait. I currently don't have any distant mets, and I'm still classified as IIIC, but clearly my Mel is knocking, and 6/30 nodes aren't good odds. I think the Onc is leaning towards being aggressive due to the pathology of my case. I'd love to get ahead of the beast, but is it OK to jump to the combo?!
This is a big fork in the road, and a big decision. Any and all input you all have, I'd greatly appreciate! Hope you are all kicking melanoma tail!
Lauren
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- March 30, 2016 at 10:47 pm
Watch and wait doesn't seem like a strategy for long term success for many. I'd go for ipi-nivo. The only downside (aside from side effects) is the possibility of disqualifying you for trials down the road.
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- March 31, 2016 at 2:14 am
I agree, watch and wait seems pretty pointless, but it is technically an option. Would it disqualify me from ALL future trials, or just the ones that include ipi and/or nivo? I haven’t looked into the qualifications for trials… -
- March 31, 2016 at 2:14 am
I agree, watch and wait seems pretty pointless, but it is technically an option. Would it disqualify me from ALL future trials, or just the ones that include ipi and/or nivo? I haven’t looked into the qualifications for trials… -
- March 31, 2016 at 2:14 am
I agree, watch and wait seems pretty pointless, but it is technically an option. Would it disqualify me from ALL future trials, or just the ones that include ipi and/or nivo? I haven’t looked into the qualifications for trials…
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- March 30, 2016 at 11:01 pm
Ipi at 10mg adjuvant or Ipi at 3mg/nivo1mg have about the same side effect profile but the combination has a much better response and survival rate!!!! If you can get access to the combination it would be a no brainer for me as long as the Oncologist is experienced in the possible side effects profile. Best wishes!!! Ed
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- March 31, 2016 at 2:19 am
Hi Ed! Yes, my onc (Dr. Flaherty at MGH) has probably seen it all at this point! Hope you’re doing well! -
- March 31, 2016 at 2:19 am
Hi Ed! Yes, my onc (Dr. Flaherty at MGH) has probably seen it all at this point! Hope you’re doing well! -
- March 31, 2016 at 2:19 am
Hi Ed! Yes, my onc (Dr. Flaherty at MGH) has probably seen it all at this point! Hope you’re doing well!
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- March 30, 2016 at 11:01 pm
Ipi at 10mg adjuvant or Ipi at 3mg/nivo1mg have about the same side effect profile but the combination has a much better response and survival rate!!!! If you can get access to the combination it would be a no brainer for me as long as the Oncologist is experienced in the possible side effects profile. Best wishes!!! Ed
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- March 30, 2016 at 11:01 pm
Ipi at 10mg adjuvant or Ipi at 3mg/nivo1mg have about the same side effect profile but the combination has a much better response and survival rate!!!! If you can get access to the combination it would be a no brainer for me as long as the Oncologist is experienced in the possible side effects profile. Best wishes!!! Ed
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- March 30, 2016 at 11:52 pm
Lauren,
Sounds like the ipi/nivo combo is the best option. You want to be aggressive. Also, there is always this assumption about side-effects. Everyone is different. I sailed through the combo with almost no side-effects, and just had my 6th dose of the Nivo-only maintenance dose. It was not till around the 5th dose of Nivo I started to have skin rash and more intense fatigue a day or two after infusion. Go for it and don't plan on side-effects, deal with them when and if they occur.
Gary
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- March 30, 2016 at 11:52 pm
Lauren,
Sounds like the ipi/nivo combo is the best option. You want to be aggressive. Also, there is always this assumption about side-effects. Everyone is different. I sailed through the combo with almost no side-effects, and just had my 6th dose of the Nivo-only maintenance dose. It was not till around the 5th dose of Nivo I started to have skin rash and more intense fatigue a day or two after infusion. Go for it and don't plan on side-effects, deal with them when and if they occur.
Gary
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- March 30, 2016 at 11:52 pm
Lauren,
Sounds like the ipi/nivo combo is the best option. You want to be aggressive. Also, there is always this assumption about side-effects. Everyone is different. I sailed through the combo with almost no side-effects, and just had my 6th dose of the Nivo-only maintenance dose. It was not till around the 5th dose of Nivo I started to have skin rash and more intense fatigue a day or two after infusion. Go for it and don't plan on side-effects, deal with them when and if they occur.
Gary
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- March 31, 2016 at 2:23 am
Hi Gary thank you for your words of wisdom. You are so right – hope for the best and jump! Hope you are feeling well. -
- March 31, 2016 at 2:23 am
Hi Gary thank you for your words of wisdom. You are so right – hope for the best and jump! Hope you are feeling well. -
- March 31, 2016 at 2:23 am
Hi Gary thank you for your words of wisdom. You are so right – hope for the best and jump! Hope you are feeling well.
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- March 31, 2016 at 1:45 am
Lauren,
In your shoes I think I'd go for the combo. There's pretty strong evidence that the lower the tumor burden the better likelihood of success with the combo. Hit it early and hit it hard. I agree the side effects are probably more likely but on my risk reward scale it's worth it. Best of luck to you. Sounds like you have a pretty good doc in your corner.
Brian
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- March 31, 2016 at 1:45 am
Lauren,
In your shoes I think I'd go for the combo. There's pretty strong evidence that the lower the tumor burden the better likelihood of success with the combo. Hit it early and hit it hard. I agree the side effects are probably more likely but on my risk reward scale it's worth it. Best of luck to you. Sounds like you have a pretty good doc in your corner.
Brian
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- March 31, 2016 at 2:28 am
Thanks for your reply, Brian. I agree, it’s worth it to beat the beast down sooner rather than later. I love my onc Dr. Flaherty – he gets so cerebral about the whole treatment plan. You can tell he really cares! -
- March 31, 2016 at 2:28 am
Thanks for your reply, Brian. I agree, it’s worth it to beat the beast down sooner rather than later. I love my onc Dr. Flaherty – he gets so cerebral about the whole treatment plan. You can tell he really cares! -
- March 31, 2016 at 2:28 am
Thanks for your reply, Brian. I agree, it’s worth it to beat the beast down sooner rather than later. I love my onc Dr. Flaherty – he gets so cerebral about the whole treatment plan. You can tell he really cares!
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- March 31, 2016 at 1:45 am
Lauren,
In your shoes I think I'd go for the combo. There's pretty strong evidence that the lower the tumor burden the better likelihood of success with the combo. Hit it early and hit it hard. I agree the side effects are probably more likely but on my risk reward scale it's worth it. Best of luck to you. Sounds like you have a pretty good doc in your corner.
Brian
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- March 31, 2016 at 12:47 pm
Lauren, I agree with Brian's "hit it early and htt it hard" strategy. I remember one of my second opinions was highly encouraging me to do the combo over a mono treatment, saying, "let's just be done with it." Those words echo in my ears as I handle each and every side effect from the combo.
Hopefully the combo won't be rough on you, but if it is, know you're being rough on Mel!
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- March 31, 2016 at 12:47 pm
Lauren, I agree with Brian's "hit it early and htt it hard" strategy. I remember one of my second opinions was highly encouraging me to do the combo over a mono treatment, saying, "let's just be done with it." Those words echo in my ears as I handle each and every side effect from the combo.
Hopefully the combo won't be rough on you, but if it is, know you're being rough on Mel!
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- March 31, 2016 at 12:47 pm
Lauren, I agree with Brian's "hit it early and htt it hard" strategy. I remember one of my second opinions was highly encouraging me to do the combo over a mono treatment, saying, "let's just be done with it." Those words echo in my ears as I handle each and every side effect from the combo.
Hopefully the combo won't be rough on you, but if it is, know you're being rough on Mel!
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- April 2, 2016 at 11:37 pm
I cannot agree with you more – let’s just be done with it! Thank you for your words of encouragement, Maria! -
- April 2, 2016 at 11:37 pm
I cannot agree with you more – let’s just be done with it! Thank you for your words of encouragement, Maria! -
- April 2, 2016 at 11:37 pm
I cannot agree with you more – let’s just be done with it! Thank you for your words of encouragement, Maria!
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- March 31, 2016 at 1:57 pm
Hi Lauren,
As others have said, at stage 3, watch and wait isn't a good long term solution.
I am in a similar situation- stage 3a, progressed to 3c with 6 teeny tiny intransits up my arm. At the time my rock star doc offered v-tec or ipi, as the intransits were too small to show up on scans (so no clinical trial). Doing something systematic (ipi) rather than local (with v-tec) made sense to me.
I had no problem figuring that my mel was unresectable. Whack a mole isn't a reasonable option. Where would you resect? Systemic has the possibility of getting mel where ever is is hiding. And that seemed like good option to me. So I started with Ipi, and have since failed that and gone on to Keytruda. I've been on Keytruda a year and so far so good.
I trust you will make a decision that you're comfortable with.
Shalom,
Julie
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- March 31, 2016 at 1:57 pm
Hi Lauren,
As others have said, at stage 3, watch and wait isn't a good long term solution.
I am in a similar situation- stage 3a, progressed to 3c with 6 teeny tiny intransits up my arm. At the time my rock star doc offered v-tec or ipi, as the intransits were too small to show up on scans (so no clinical trial). Doing something systematic (ipi) rather than local (with v-tec) made sense to me.
I had no problem figuring that my mel was unresectable. Whack a mole isn't a reasonable option. Where would you resect? Systemic has the possibility of getting mel where ever is is hiding. And that seemed like good option to me. So I started with Ipi, and have since failed that and gone on to Keytruda. I've been on Keytruda a year and so far so good.
I trust you will make a decision that you're comfortable with.
Shalom,
Julie
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- March 31, 2016 at 1:57 pm
Hi Lauren,
As others have said, at stage 3, watch and wait isn't a good long term solution.
I am in a similar situation- stage 3a, progressed to 3c with 6 teeny tiny intransits up my arm. At the time my rock star doc offered v-tec or ipi, as the intransits were too small to show up on scans (so no clinical trial). Doing something systematic (ipi) rather than local (with v-tec) made sense to me.
I had no problem figuring that my mel was unresectable. Whack a mole isn't a reasonable option. Where would you resect? Systemic has the possibility of getting mel where ever is is hiding. And that seemed like good option to me. So I started with Ipi, and have since failed that and gone on to Keytruda. I've been on Keytruda a year and so far so good.
I trust you will make a decision that you're comfortable with.
Shalom,
Julie
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- April 2, 2016 at 11:52 pm
Hi Julie! I agree, we’ve been playing whack a mole with a scalpel, and it’s clearly not enough. Glad to hear you’re doing well a year out on Keytruda – that’s incredibly encouraging! -
- April 2, 2016 at 11:52 pm
Hi Julie! I agree, we’ve been playing whack a mole with a scalpel, and it’s clearly not enough. Glad to hear you’re doing well a year out on Keytruda – that’s incredibly encouraging! -
- April 2, 2016 at 11:52 pm
Hi Julie! I agree, we’ve been playing whack a mole with a scalpel, and it’s clearly not enough. Glad to hear you’re doing well a year out on Keytruda – that’s incredibly encouraging!
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- April 1, 2016 at 3:18 am
Wow! I am surprised (and impressed) that your doctor is willing and able to recommend the combo at your stage. However, I am wondering why your doctor did not offer you Nivo alone (or Keytruda alone) as an option. Their success rates alone are almost as high as the combo but with much fewer side effects. I saw my oncologist on the 15th of this month and his first choice for me is Keytruda alone based on my low tumor burden (lungs only) even though I am stage IV due to the side-effect issue.
Good luck to you whatever you decide.
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- April 1, 2016 at 3:18 am
Wow! I am surprised (and impressed) that your doctor is willing and able to recommend the combo at your stage. However, I am wondering why your doctor did not offer you Nivo alone (or Keytruda alone) as an option. Their success rates alone are almost as high as the combo but with much fewer side effects. I saw my oncologist on the 15th of this month and his first choice for me is Keytruda alone based on my low tumor burden (lungs only) even though I am stage IV due to the side-effect issue.
Good luck to you whatever you decide.
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- April 1, 2016 at 3:18 am
Wow! I am surprised (and impressed) that your doctor is willing and able to recommend the combo at your stage. However, I am wondering why your doctor did not offer you Nivo alone (or Keytruda alone) as an option. Their success rates alone are almost as high as the combo but with much fewer side effects. I saw my oncologist on the 15th of this month and his first choice for me is Keytruda alone based on my low tumor burden (lungs only) even though I am stage IV due to the side-effect issue.
Good luck to you whatever you decide.
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- April 2, 2016 at 11:58 pm
Hey Maggie! I was also very surprised by the offer of the combo by the onc. The thinking (from what I understand) is that the combo is fast becoming the first line approach, so let’s start there and change if the side effects become too much. I have an appointment with him in 2 weeks when we start the treatment and I have a million questions to ask! Thank you for your input! -
- April 2, 2016 at 11:58 pm
Hey Maggie! I was also very surprised by the offer of the combo by the onc. The thinking (from what I understand) is that the combo is fast becoming the first line approach, so let’s start there and change if the side effects become too much. I have an appointment with him in 2 weeks when we start the treatment and I have a million questions to ask! Thank you for your input! -
- April 2, 2016 at 11:58 pm
Hey Maggie! I was also very surprised by the offer of the combo by the onc. The thinking (from what I understand) is that the combo is fast becoming the first line approach, so let’s start there and change if the side effects become too much. I have an appointment with him in 2 weeks when we start the treatment and I have a million questions to ask! Thank you for your input!
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