› Forums › Cutaneous Melanoma Community › Need some help with questions
- This topic has 21 replies, 4 voices, and was last updated 13 years, 7 months ago by
Gene_S.
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- February 16, 2012 at 2:05 am
The more I read on this board the more I realize that I am not informed on my cancer status. Was told in December I am stage 4 with the melanoma spread in my lungs from my primary in my left finger(2006) a reaccurnace in Dec 2010 to the forearm and lymph nodes.
What I am asking for is some questions that I should be asking the oncologist on Monday, I see him before I have my third yervoy infusion.
The more I read on this board the more I realize that I am not informed on my cancer status. Was told in December I am stage 4 with the melanoma spread in my lungs from my primary in my left finger(2006) a reaccurnace in Dec 2010 to the forearm and lymph nodes.
What I am asking for is some questions that I should be asking the oncologist on Monday, I see him before I have my third yervoy infusion.
I do know that I am Braf negative (whatever that means) don't know much else. I am being seen at the Marshfield clinic in Wisconsin. I am actually his first patient for the Yervoy. I have gotten 3 opinions already and they all said to go with the Yervoy since interferon was too hard on me last year, did the month infusion but it made me so sick had to stop the shots at home.
As far as the Yervoy I am tolerating it well, my labs are all good but am having alot of the itching. You all are such fighters here and I intend to be too so am thanking anyone who could help me out here….yoopergirl
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- February 16, 2012 at 2:37 am
Yoopergirl,
I'm not sure what questions you might want to ask, other than what they might do for your itching and how soon they will be able to tell if you are a responder. Find out what Plan B is if this isn't working. Find out whether they participate in any medical trials and if not, is there somewhere else closeby that might.
BRAF is a mutation that approximately 50% of metastatic melanoma has. There are certain BRAF targeted medications (like Zelboraf) that can block this pathway and inhibit cancer growth. Those medicines will not work on those people whose cancer does not have this mutation.
There has been a lot of positive talk about a new targeted treatment: Anti PD-1. This might be something worth researching/looking into to see if there is somewhere you might be able to go for a trial. I am pretty sure there is one down in Detroit, but I know that would be several hours away for you, depending where in Yoop you live.
Another treatment that has shown some promise is called TIL. I know that the NIH has had an ongoing study for this. Basically, they remove a tissue sample from a measurable tumor you have, extract the cancer-fighting cells they find there, enhance them so they become supercharged cancer fighters and then they inject them back in to you to fight off the cancer.
Here's hoping you won't need any other treatments because the Yervoy kicks your cancer's butt!
Michelle, wife of Don
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- February 16, 2012 at 2:37 am
Yoopergirl,
I'm not sure what questions you might want to ask, other than what they might do for your itching and how soon they will be able to tell if you are a responder. Find out what Plan B is if this isn't working. Find out whether they participate in any medical trials and if not, is there somewhere else closeby that might.
BRAF is a mutation that approximately 50% of metastatic melanoma has. There are certain BRAF targeted medications (like Zelboraf) that can block this pathway and inhibit cancer growth. Those medicines will not work on those people whose cancer does not have this mutation.
There has been a lot of positive talk about a new targeted treatment: Anti PD-1. This might be something worth researching/looking into to see if there is somewhere you might be able to go for a trial. I am pretty sure there is one down in Detroit, but I know that would be several hours away for you, depending where in Yoop you live.
Another treatment that has shown some promise is called TIL. I know that the NIH has had an ongoing study for this. Basically, they remove a tissue sample from a measurable tumor you have, extract the cancer-fighting cells they find there, enhance them so they become supercharged cancer fighters and then they inject them back in to you to fight off the cancer.
Here's hoping you won't need any other treatments because the Yervoy kicks your cancer's butt!
Michelle, wife of Don
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- February 16, 2012 at 2:47 am
Thanks Michelle, the oncologist that I am seeing is the head of research so I will take all those questions with me, wish I was closer to Detroit but that is a good 10 hours from us, that is why I choose WIsconsin. I am hoping that the Yervoy does work but am willing to travel anywhere to try another treatment if needed.
yoopergirl
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- February 16, 2012 at 2:47 am
Thanks Michelle, the oncologist that I am seeing is the head of research so I will take all those questions with me, wish I was closer to Detroit but that is a good 10 hours from us, that is why I choose WIsconsin. I am hoping that the Yervoy does work but am willing to travel anywhere to try another treatment if needed.
yoopergirl
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- February 16, 2012 at 2:47 am
Thanks Michelle, the oncologist that I am seeing is the head of research so I will take all those questions with me, wish I was closer to Detroit but that is a good 10 hours from us, that is why I choose WIsconsin. I am hoping that the Yervoy does work but am willing to travel anywhere to try another treatment if needed.
yoopergirl
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- February 16, 2012 at 2:37 am
Yoopergirl,
I'm not sure what questions you might want to ask, other than what they might do for your itching and how soon they will be able to tell if you are a responder. Find out what Plan B is if this isn't working. Find out whether they participate in any medical trials and if not, is there somewhere else closeby that might.
BRAF is a mutation that approximately 50% of metastatic melanoma has. There are certain BRAF targeted medications (like Zelboraf) that can block this pathway and inhibit cancer growth. Those medicines will not work on those people whose cancer does not have this mutation.
There has been a lot of positive talk about a new targeted treatment: Anti PD-1. This might be something worth researching/looking into to see if there is somewhere you might be able to go for a trial. I am pretty sure there is one down in Detroit, but I know that would be several hours away for you, depending where in Yoop you live.
Another treatment that has shown some promise is called TIL. I know that the NIH has had an ongoing study for this. Basically, they remove a tissue sample from a measurable tumor you have, extract the cancer-fighting cells they find there, enhance them so they become supercharged cancer fighters and then they inject them back in to you to fight off the cancer.
Here's hoping you won't need any other treatments because the Yervoy kicks your cancer's butt!
Michelle, wife of Don
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- February 16, 2012 at 5:14 am
We used to live in Sun Prairie, so I know where you're at!…I think Yervoy is a good choice, but in the meantime plan to move close to a major melanoma center…I am in an anti PD-1 trial at Moffitt in Florida.
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- February 16, 2012 at 2:30 pm
Hello,
My husband has been on Yervoy clinical trial since March 4, 2011. They gave him a prescription drug for the itching. He doesn't take it. He said itching is a small price to pay if it will kick mels butt. It metastisize to his liver and lungs if you want to read more about him check out the profile.
Are you seeing a melanoma specialist? Do you have copies of your pathology? Sometimes there are others on the board that can help you if they have further questions that you might find the answers on it. Do they do clinical trials at your facility?
Do you have any other side effects other than itching? I also say ask about plan B if it is not working and it would be good to get plan C in order as well.
Not much help from me but praying that the Yervoy works.
Judy (loving wife and caregiver to Gene Stage IV)
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- February 16, 2012 at 2:30 pm
Hello,
My husband has been on Yervoy clinical trial since March 4, 2011. They gave him a prescription drug for the itching. He doesn't take it. He said itching is a small price to pay if it will kick mels butt. It metastisize to his liver and lungs if you want to read more about him check out the profile.
Are you seeing a melanoma specialist? Do you have copies of your pathology? Sometimes there are others on the board that can help you if they have further questions that you might find the answers on it. Do they do clinical trials at your facility?
Do you have any other side effects other than itching? I also say ask about plan B if it is not working and it would be good to get plan C in order as well.
Not much help from me but praying that the Yervoy works.
Judy (loving wife and caregiver to Gene Stage IV)
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- February 16, 2012 at 4:27 pm
I am not seeing a Melanoma Specialist right now but was referred to this Doctor by one. The small community that we live in doesn't provide any bigger facilty's. I don't have copies of the pathology report. I would have to move to do a clinical trial, this is a small place that I go for the treatment.
I also have a prescription for the itching but so far haven't needed to take it just use cream now.
I tried to put my profile on but was not able to do without being able to log back in.
Today am having a bad time, don't know if my running to the bathroom is from the Yervoy or something that is going around our area, so hard to tell but I will keep a close eye on it.
yoopergirl
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- February 16, 2012 at 4:27 pm
I am not seeing a Melanoma Specialist right now but was referred to this Doctor by one. The small community that we live in doesn't provide any bigger facilty's. I don't have copies of the pathology report. I would have to move to do a clinical trial, this is a small place that I go for the treatment.
I also have a prescription for the itching but so far haven't needed to take it just use cream now.
I tried to put my profile on but was not able to do without being able to log back in.
Today am having a bad time, don't know if my running to the bathroom is from the Yervoy or something that is going around our area, so hard to tell but I will keep a close eye on it.
yoopergirl
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- February 16, 2012 at 5:01 pm
Make sure to let the Dr. know about running to the bathroom and let him decide if something should be given to help that since you are on Yervoy and it could be the starting of colitis or something.
You can ask for copies of your pathology report from the Dr. Also we get copies of scans and blood tests as well.
Hope you are feeling better soon.
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- February 16, 2012 at 5:01 pm
Make sure to let the Dr. know about running to the bathroom and let him decide if something should be given to help that since you are on Yervoy and it could be the starting of colitis or something.
You can ask for copies of your pathology report from the Dr. Also we get copies of scans and blood tests as well.
Hope you are feeling better soon.
-
- February 16, 2012 at 5:01 pm
Make sure to let the Dr. know about running to the bathroom and let him decide if something should be given to help that since you are on Yervoy and it could be the starting of colitis or something.
You can ask for copies of your pathology report from the Dr. Also we get copies of scans and blood tests as well.
Hope you are feeling better soon.
-
- February 16, 2012 at 4:27 pm
I am not seeing a Melanoma Specialist right now but was referred to this Doctor by one. The small community that we live in doesn't provide any bigger facilty's. I don't have copies of the pathology report. I would have to move to do a clinical trial, this is a small place that I go for the treatment.
I also have a prescription for the itching but so far haven't needed to take it just use cream now.
I tried to put my profile on but was not able to do without being able to log back in.
Today am having a bad time, don't know if my running to the bathroom is from the Yervoy or something that is going around our area, so hard to tell but I will keep a close eye on it.
yoopergirl
-
- February 16, 2012 at 2:30 pm
Hello,
My husband has been on Yervoy clinical trial since March 4, 2011. They gave him a prescription drug for the itching. He doesn't take it. He said itching is a small price to pay if it will kick mels butt. It metastisize to his liver and lungs if you want to read more about him check out the profile.
Are you seeing a melanoma specialist? Do you have copies of your pathology? Sometimes there are others on the board that can help you if they have further questions that you might find the answers on it. Do they do clinical trials at your facility?
Do you have any other side effects other than itching? I also say ask about plan B if it is not working and it would be good to get plan C in order as well.
Not much help from me but praying that the Yervoy works.
Judy (loving wife and caregiver to Gene Stage IV)
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Tagged: cutaneous melanoma
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