› Forums › General Melanoma Community › Surgery on Friday
- This topic has 12 replies, 5 voices, and was last updated 13 years, 1 month ago by
justlittleoleme.
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- September 21, 2011 at 3:53 pm
My husband's surgery is Friday. I have asked them to test the tumor for BRAF anything else we need to request?
We visited with a melanoma oncologist Monday who gave us three options for adjuvant treatment.
1) radiation 2) interferon 3) clinical trial with a)interferon b)Yervoy-depending on which group he would get into.
We will know more once the surgery is completed and the pathology results are back.
My husband's surgery is Friday. I have asked them to test the tumor for BRAF anything else we need to request?
We visited with a melanoma oncologist Monday who gave us three options for adjuvant treatment.
1) radiation 2) interferon 3) clinical trial with a)interferon b)Yervoy-depending on which group he would get into.
We will know more once the surgery is completed and the pathology results are back.
I am planning on attending the symposium in Chicago on 10/1. I am hoping he is feeling better so I can go. I think there is a lot I may learn.
Thank you Tim for this website! I have learned so much and I feel my knowledge of melanoma is still in its infancy. I really don't WANT to know more, but I NEED to know more. I want my husband around for a long time!
barb
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- September 21, 2011 at 4:14 pm
I'm no expert, but some of the language is being used is confusing. Adjuvant therapy is treatment in addition to the main mode of treatment. You want to have something going on to attack the disease systemically. Radiation therapy is adjuvant therapy. It won't cure the disease – but can help control it. So radiation treatment is not a choice for adjuvant therapy – it should be done and is a separate issue from the other options you've been presented.
The primary modes of FDA approved treatment today seem to be Interleukin-2 and Yervoy. Interferon has lost its luster as a primary systemic therapy. I'd be curious to know why your melanoma specialist thinks interferon is better than IL-2 or Yervoy. And why the specialist would skip Yervoy as a front line systemic treatment since it is already approved in favor of a clinical trial with it and some other drug.
The clinical trials which seem to be having more success than others involve either adaptive cell therapy or tumor infiltrating lymphocytes. Typically this means harvesting a tumor, replicating the killer cells by the billions, treating them in various ways, and then reinjecting them back into the body with IL-2 after having killed off your existing killer cells with chemotherapy. Has this been offered to your husband?
best of luck,
Nick
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- September 21, 2011 at 5:40 pm
Nick,
Thanks for the reply.
Radiation they feel is a given this time. They want to "mop" up any cells that could get left behind from his surgery.
No one except us has mentioned IL-2. I know of IL-2 because it has been a lifesaver for the owner of the company I work at. He had renal cell cancer.
We are hoping to meet with the Medical Oncologist at University of Michigan at his post-op visit to see their treatment plan.
The concurring opinion seems to be that since they feel they can cut his cancer out rendering him free of disease they don't consider systemic therapy because there is no way to see if it is working since there is no disease to measure against.
Since this is a recurrence, I feel otherwise. My fear is that it will recur again, in a different, more difficult area and not be resectable. I know there are no guarantees in life but I want many more years with my husband and if we can prevent or make it more difficult to recur, I would like to investigage it as an option.
Part of the reason I asked these questions is specifically for questions and answers like yours! I need to garner the expertise of all the other warriors battling the beast melanoma.
barb
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- September 21, 2011 at 9:59 pm
Barb,
It sounds like your husband is currently NED. The options that your husband were given are basically the only options that are out there. IL2 and Yervoy are given only if there is measurable disease. The trial of interfuron vs Yervoy 10 mg is a trial that has just been opened. We have another on the board that just was randomized and got interfuron.
I am stage IV and currently NED (scans in 2 weeks). They discussed the Interfuron vs Yervoy trial with me but it's too far to travel if I end up getting the Interfuron arm. I just finished radiation because my last tumor was along the nerve and they believe cells were left behind. Radiation was used to mop up the cells.
Make the decision based on all of the facts that you can get then don't look back.
Linda
Stage IV since 06
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- September 21, 2011 at 9:59 pm
Barb,
It sounds like your husband is currently NED. The options that your husband were given are basically the only options that are out there. IL2 and Yervoy are given only if there is measurable disease. The trial of interfuron vs Yervoy 10 mg is a trial that has just been opened. We have another on the board that just was randomized and got interfuron.
I am stage IV and currently NED (scans in 2 weeks). They discussed the Interfuron vs Yervoy trial with me but it's too far to travel if I end up getting the Interfuron arm. I just finished radiation because my last tumor was along the nerve and they believe cells were left behind. Radiation was used to mop up the cells.
Make the decision based on all of the facts that you can get then don't look back.
Linda
Stage IV since 06
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- September 21, 2011 at 5:40 pm
Nick,
Thanks for the reply.
Radiation they feel is a given this time. They want to "mop" up any cells that could get left behind from his surgery.
No one except us has mentioned IL-2. I know of IL-2 because it has been a lifesaver for the owner of the company I work at. He had renal cell cancer.
We are hoping to meet with the Medical Oncologist at University of Michigan at his post-op visit to see their treatment plan.
The concurring opinion seems to be that since they feel they can cut his cancer out rendering him free of disease they don't consider systemic therapy because there is no way to see if it is working since there is no disease to measure against.
Since this is a recurrence, I feel otherwise. My fear is that it will recur again, in a different, more difficult area and not be resectable. I know there are no guarantees in life but I want many more years with my husband and if we can prevent or make it more difficult to recur, I would like to investigage it as an option.
Part of the reason I asked these questions is specifically for questions and answers like yours! I need to garner the expertise of all the other warriors battling the beast melanoma.
barb
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- September 21, 2011 at 4:14 pm
I'm no expert, but some of the language is being used is confusing. Adjuvant therapy is treatment in addition to the main mode of treatment. You want to have something going on to attack the disease systemically. Radiation therapy is adjuvant therapy. It won't cure the disease – but can help control it. So radiation treatment is not a choice for adjuvant therapy – it should be done and is a separate issue from the other options you've been presented.
The primary modes of FDA approved treatment today seem to be Interleukin-2 and Yervoy. Interferon has lost its luster as a primary systemic therapy. I'd be curious to know why your melanoma specialist thinks interferon is better than IL-2 or Yervoy. And why the specialist would skip Yervoy as a front line systemic treatment since it is already approved in favor of a clinical trial with it and some other drug.
The clinical trials which seem to be having more success than others involve either adaptive cell therapy or tumor infiltrating lymphocytes. Typically this means harvesting a tumor, replicating the killer cells by the billions, treating them in various ways, and then reinjecting them back into the body with IL-2 after having killed off your existing killer cells with chemotherapy. Has this been offered to your husband?
best of luck,
Nick
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- September 21, 2011 at 6:07 pm
Barb: My husband started out at the U of M Ann Arbor. I would advise you to get a second and maybe third opinion, from melanoma experts. Feel free to contact me. [email protected]
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- September 21, 2011 at 6:07 pm
Barb: My husband started out at the U of M Ann Arbor. I would advise you to get a second and maybe third opinion, from melanoma experts. Feel free to contact me. [email protected]
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- September 23, 2011 at 12:33 pm
Hello Barb,
I am very sorry to hear about your husband. I agree with others, that an opinion of other melanoma specialists would be advisable, because opinions are never too much.
As for the given options, my aunt (diagnosed with melanoma stage 3 in 2007) tried radiation plus virotherapy. In her case, she was not strong enough to bear radio with its side-effects alone, so she used virotherapy products (in her case, Rigvir) in order to activate immune system and the healthy cells would be strong enough to fight the cancer. As far as I know, virotherapy can be combined with other treatment methods and has proven itself to be effective. My aunt`s recovery was succesful and I`m glad to say, she is now cancer free. Here`s the page I she consulted: http://www.news-medical.net/health/Virotherapy-Products.aspxWishing you all the best for recovery and on deciding the best option for your husband!
H -
- September 23, 2011 at 12:33 pm
Hello Barb,
I am very sorry to hear about your husband. I agree with others, that an opinion of other melanoma specialists would be advisable, because opinions are never too much.
As for the given options, my aunt (diagnosed with melanoma stage 3 in 2007) tried radiation plus virotherapy. In her case, she was not strong enough to bear radio with its side-effects alone, so she used virotherapy products (in her case, Rigvir) in order to activate immune system and the healthy cells would be strong enough to fight the cancer. As far as I know, virotherapy can be combined with other treatment methods and has proven itself to be effective. My aunt`s recovery was succesful and I`m glad to say, she is now cancer free. Here`s the page I she consulted: http://www.news-medical.net/health/Virotherapy-Products.aspxWishing you all the best for recovery and on deciding the best option for your husband!
H -
- September 28, 2011 at 1:18 pm
Update on surgery.
surgery took over 9 hours and they were able to save his facial nerve!
We are home now. We were in the hospital from Friday through Tuesday.
He came home with one drain which we are looking to get removed today since the output is within level.
We are awaiting the pathology which should be in on Friday. I will update again once that is in.
I am not going to be able to attend the symposium in Chicago due to our extended stay in the hospital. I hope the information will be online after. I was really looking forward to attending and learning more.
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- September 28, 2011 at 1:18 pm
Update on surgery.
surgery took over 9 hours and they were able to save his facial nerve!
We are home now. We were in the hospital from Friday through Tuesday.
He came home with one drain which we are looking to get removed today since the output is within level.
We are awaiting the pathology which should be in on Friday. I will update again once that is in.
I am not going to be able to attend the symposium in Chicago due to our extended stay in the hospital. I hope the information will be online after. I was really looking forward to attending and learning more.
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