› Forums › General Melanoma Community › Local recurrence?
- This topic has 9 replies, 3 voices, and was last updated 9 years, 4 months ago by BrianP.
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- December 24, 2014 at 12:19 am
I was diagnosed with stage 3C in December 2013. I was in clinical trial E1609 until about a month ago, where I received 10mg/kg of Yervoy (ipilimumab). Unfortunately, I was kicked out of the trial after one maintenance dose because of adrenal failure. 🙁 last week, I went to see the surgical oncologist who did my radical neck dissection. During the exam, they found what they suspect is a swollen lymph node very close to where one of my scars is.. Maybe 4 inches from the original melanoma. They haven't called me back to schedule the ultrasound and fine needle aspiration and I'm getting more nervous by the day. I already have scans scheduled for Jan 2nd that were on the books before this. The recent exam was done at Vanderbilt and I am currently receiving treatment (scans, etc) locally in Knoxville, TN.
IF this comes back as melanoma, can anyone tell me what my next steps would be as far as treatment? I don't know if I'm BRAF positive as my original melanoma wasn't tested.
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- December 24, 2014 at 3:29 pm
As far as FDA approved if you are BRAF positive you can take the Tafinlar/Mekenist combo. From personal experience I would do it rather than Zelboraf. I did both and it was much easier to tolerate. But everyone is different. Also the combo is targetting both B-RAF and MEK whereas Zelboraf only targets B-RAF.
Also for FDA since you have already done ipi and if you are BRAF negative or the BRAF fails you then you can do PD-1. That is either Merck's Keytruda PD1 which is what I'm on. It is 2mg/kg every 3 weeks. Or the newly approved BMS Opdivo PD1 which is 3mg/kg every 2 weeks.
Of course you know about trials. I'm not really sure what would be good in your situation but I would think anything with PD1 but that is just my opinion.
Best of luck to you.
Artie
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- December 24, 2014 at 3:29 pm
As far as FDA approved if you are BRAF positive you can take the Tafinlar/Mekenist combo. From personal experience I would do it rather than Zelboraf. I did both and it was much easier to tolerate. But everyone is different. Also the combo is targetting both B-RAF and MEK whereas Zelboraf only targets B-RAF.
Also for FDA since you have already done ipi and if you are BRAF negative or the BRAF fails you then you can do PD-1. That is either Merck's Keytruda PD1 which is what I'm on. It is 2mg/kg every 3 weeks. Or the newly approved BMS Opdivo PD1 which is 3mg/kg every 2 weeks.
Of course you know about trials. I'm not really sure what would be good in your situation but I would think anything with PD1 but that is just my opinion.
Best of luck to you.
Artie
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- December 24, 2014 at 3:29 pm
As far as FDA approved if you are BRAF positive you can take the Tafinlar/Mekenist combo. From personal experience I would do it rather than Zelboraf. I did both and it was much easier to tolerate. But everyone is different. Also the combo is targetting both B-RAF and MEK whereas Zelboraf only targets B-RAF.
Also for FDA since you have already done ipi and if you are BRAF negative or the BRAF fails you then you can do PD-1. That is either Merck's Keytruda PD1 which is what I'm on. It is 2mg/kg every 3 weeks. Or the newly approved BMS Opdivo PD1 which is 3mg/kg every 2 weeks.
Of course you know about trials. I'm not really sure what would be good in your situation but I would think anything with PD1 but that is just my opinion.
Best of luck to you.
Artie
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- December 24, 2014 at 11:27 pm
Hi Heidi- I was glad to see your post, although not the news. My husband was in the same trial as you at the same time with the same 10 mg dose of ipi. He finished the 4 induction infusions with manageable side effects. Unfortunately, a small liver metastasis was found at the week 14 scan. He had microwave ablation surgery and has been NED since then. No further treatment and no maintenance doses. It was really hard emotionally to be removed from the trial.
Your tumor is in a registry somewhere. Your doctor should get it tested for genetic variations. This will influence your further treatment. Keytruda or Nivo may be an option also. It sounds like they are going to biopsy the node which was the first thing they did for my husband.
I am sorry you got such bad news before Christmas. I know last Christmas was really stressful for us starting the trial and everything. It sucks that you have to go through another anxiety producting holiday.
Please keep us updated.
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- December 24, 2014 at 11:27 pm
Hi Heidi- I was glad to see your post, although not the news. My husband was in the same trial as you at the same time with the same 10 mg dose of ipi. He finished the 4 induction infusions with manageable side effects. Unfortunately, a small liver metastasis was found at the week 14 scan. He had microwave ablation surgery and has been NED since then. No further treatment and no maintenance doses. It was really hard emotionally to be removed from the trial.
Your tumor is in a registry somewhere. Your doctor should get it tested for genetic variations. This will influence your further treatment. Keytruda or Nivo may be an option also. It sounds like they are going to biopsy the node which was the first thing they did for my husband.
I am sorry you got such bad news before Christmas. I know last Christmas was really stressful for us starting the trial and everything. It sucks that you have to go through another anxiety producting holiday.
Please keep us updated.
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- December 24, 2014 at 11:27 pm
Hi Heidi- I was glad to see your post, although not the news. My husband was in the same trial as you at the same time with the same 10 mg dose of ipi. He finished the 4 induction infusions with manageable side effects. Unfortunately, a small liver metastasis was found at the week 14 scan. He had microwave ablation surgery and has been NED since then. No further treatment and no maintenance doses. It was really hard emotionally to be removed from the trial.
Your tumor is in a registry somewhere. Your doctor should get it tested for genetic variations. This will influence your further treatment. Keytruda or Nivo may be an option also. It sounds like they are going to biopsy the node which was the first thing they did for my husband.
I am sorry you got such bad news before Christmas. I know last Christmas was really stressful for us starting the trial and everything. It sucks that you have to go through another anxiety producting holiday.
Please keep us updated.
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- December 26, 2014 at 6:03 pm
Heidi,
So sorry for this news right at Christmas time. Hopefully it hasn't distracted you too much from enjoying the season. I know the news of the swollen node is very concerning but try not to jump to the worst conclusions too soon. Could just be an inflamed node or it could be ipi causing some time of inflamation at that particular node. The timing of the next scan is fortunate. I think you are on the right track with needle aspiration. It's really tough to contemplate next steps until you get the results from the aspiration. Hang in their Heidi. Praying for you.
Brian
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- December 26, 2014 at 6:03 pm
Heidi,
So sorry for this news right at Christmas time. Hopefully it hasn't distracted you too much from enjoying the season. I know the news of the swollen node is very concerning but try not to jump to the worst conclusions too soon. Could just be an inflamed node or it could be ipi causing some time of inflamation at that particular node. The timing of the next scan is fortunate. I think you are on the right track with needle aspiration. It's really tough to contemplate next steps until you get the results from the aspiration. Hang in their Heidi. Praying for you.
Brian
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- December 26, 2014 at 6:03 pm
Heidi,
So sorry for this news right at Christmas time. Hopefully it hasn't distracted you too much from enjoying the season. I know the news of the swollen node is very concerning but try not to jump to the worst conclusions too soon. Could just be an inflamed node or it could be ipi causing some time of inflamation at that particular node. The timing of the next scan is fortunate. I think you are on the right track with needle aspiration. It's really tough to contemplate next steps until you get the results from the aspiration. Hang in their Heidi. Praying for you.
Brian
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