Recurrent melanoma

I am so sorry to hear of your husband's troubles.  That sounds like a huge tumor.  Unfortunately there are no trails available if you are stage 3 and if the tumor can be completely removed by surgery.  But that being said, most of us that are in that category go on to live long and healthy lives. 

Melanoma is known to be radiation resistant.  Though many seem to try it to "clean-up" areas.  The only thing else if you are stage 3 is going to be interferon and that is very controversial too.  I'll leave you to do your own research and make up your own mind on that one.

Good Luck,

Mary

Stage 3

I am so sorry to hear of your husband's troubles.  That sounds like a huge tumor.  Unfortunately there are no trails available if you are stage 3 and if the tumor can be completely removed by surgery.  But that being said, most of us that are in that category go on to live long and healthy lives. 

Melanoma is known to be radiation resistant.  Though many seem to try it to "clean-up" areas.  The only thing else if you are stage 3 is going to be interferon and that is very controversial too.  I'll leave you to do your own research and make up your own mind on that one.

Good Luck,

Mary

Stage 3

I am sorry to hear that your husband's melanoma recurred. Here's a list of clinical trials for Stage III melanoma from clinicaltrials.gov:

http://clinicaltrials.gov/ct2/results?term=melanoma+stage+iii

I am stage III and am on a vaccine trial.

Another piece of advice I see given frequently on this board is to make sure that you are seeing a melanoma specialist rather than a general oncologist. The melanoma specialist will be more up to speed on the different treatments and trials available.

Prayers to you and your husband.

I am sorry to hear that your husband's melanoma recurred. Here's a list of clinical trials for Stage III melanoma from clinicaltrials.gov:

http://clinicaltrials.gov/ct2/results?term=melanoma+stage+iii

I am stage III and am on a vaccine trial.

Another piece of advice I see given frequently on this board is to make sure that you are seeing a melanoma specialist rather than a general oncologist. The melanoma specialist will be more up to speed on the different treatments and trials available.

Prayers to you and your husband.

While not quite a direct answer to your question…

I had a neck dissection in June 2010. It IS a huge surgery. Be sure and ask about rehab for his neck/shoulder, as he heals. I was very tight/limited range of motion, and if I hadn't asked and been referred for rehab, would not be in good shape now. 

It seems so obvious, but often "they" don't think to tell you these side issues until YOU bring it up! 

I'm sure the surgeon has explained the tricky nature of the surgery. My mouth drooped slightly (slowly recovered full use), eating was really hard for a long time, as I could only open my mouth a limited amount. Kept banging my teeth with the spoon or fork. Also, I had numbness from my rt ear, down to my rt chest, over to my shoulder, and almost to my throat under my chin. 

Some has resolved or receeded over time. Some is permanent (ear numb, chest numb, under chin numb). That's ok, I'm still here.

Also, with radiation to the parotid, a side effect which can be permanent is dry mouth. This can lead to dental issues, so make sure his dentist knows about this surgery. If possible, have his teeth cleaned ahead of the surgery, he won't be in a physical position to tolerate the dental chair for a while post surgery.

Best of luck to your husband, and prayers for your family!

TracyLee

While not quite a direct answer to your question…

I had a neck dissection in June 2010. It IS a huge surgery. Be sure and ask about rehab for his neck/shoulder, as he heals. I was very tight/limited range of motion, and if I hadn't asked and been referred for rehab, would not be in good shape now. 

It seems so obvious, but often "they" don't think to tell you these side issues until YOU bring it up! 

I'm sure the surgeon has explained the tricky nature of the surgery. My mouth drooped slightly (slowly recovered full use), eating was really hard for a long time, as I could only open my mouth a limited amount. Kept banging my teeth with the spoon or fork. Also, I had numbness from my rt ear, down to my rt chest, over to my shoulder, and almost to my throat under my chin. 

Some has resolved or receeded over time. Some is permanent (ear numb, chest numb, under chin numb). That's ok, I'm still here.

Also, with radiation to the parotid, a side effect which can be permanent is dry mouth. This can lead to dental issues, so make sure his dentist knows about this surgery. If possible, have his teeth cleaned ahead of the surgery, he won't be in a physical position to tolerate the dental chair for a while post surgery.

Best of luck to your husband, and prayers for your family!

TracyLee

Is his oncologist at U of M suggesting radiation or the one at the local cancer center?  I ask this because I went to U of M and my onc told me that melanoma is pretty resistant to radiation, so even though my surgeon told me that would probably be the next stop, the onc said no and offered a clinical trial, interferon, or watch and wait.  That was 10 years ago so I don't know what they offer now. 

While trying to stay on the right side of not offering medical advice, I would urge you to not go with a local place unless they have melanoma specialists. Many oncologists will SAY they are mel experts but there's a list you can find on this site that shows where they are and they are they' aren't everywhere.  I saw Dr. Redman at U of M – who is your husband seeing?

Good luck to you both.  Treatment decisions are very difficult and whatever he decides needs to be right for him.  I would ask a lot of questions about radiation for this and make sure he's in the hands of experts.

DebbieH, stage IIIC, NED 10 years tomorrow after interferon

Is his oncologist at U of M suggesting radiation or the one at the local cancer center?  I ask this because I went to U of M and my onc told me that melanoma is pretty resistant to radiation, so even though my surgeon told me that would probably be the next stop, the onc said no and offered a clinical trial, interferon, or watch and wait.  That was 10 years ago so I don't know what they offer now. 

While trying to stay on the right side of not offering medical advice, I would urge you to not go with a local place unless they have melanoma specialists. Many oncologists will SAY they are mel experts but there's a list you can find on this site that shows where they are and they are they' aren't everywhere.  I saw Dr. Redman at U of M – who is your husband seeing?

Good luck to you both.  Treatment decisions are very difficult and whatever he decides needs to be right for him.  I would ask a lot of questions about radiation for this and make sure he's in the hands of experts.

DebbieH, stage IIIC, NED 10 years tomorrow after interferon

Yes.. you should. and in my opinion, you should be finding some stuff out BEFORE the surgery. There is a chance that you might want to have that tumor material tested for th BRAF gene, and that is something (I think) that you might need to know before the surgery, because the material will need to be treated in a certain way right after surgery.

You are pretty short on time before that surgery, but you still might be able to look into some trial requirements, and speak to some clinical nurses regarding steps to take, and maybe even have the chance to get a second opinion visit in if it's feasible.

And, I'm not saying that your husband's doctor isn't doing the right thing. I'm not a doctor, and in if I were in his shoes, I'd likely be following the same kind of protocol they've laid out.

But I do think you should absolutely look at further treatment or trials.

good luck!

dian in spokane

stageIV NED 2 +yrs

Yes.. you should. and in my opinion, you should be finding some stuff out BEFORE the surgery. There is a chance that you might want to have that tumor material tested for th BRAF gene, and that is something (I think) that you might need to know before the surgery, because the material will need to be treated in a certain way right after surgery.

You are pretty short on time before that surgery, but you still might be able to look into some trial requirements, and speak to some clinical nurses regarding steps to take, and maybe even have the chance to get a second opinion visit in if it's feasible.

And, I'm not saying that your husband's doctor isn't doing the right thing. I'm not a doctor, and in if I were in his shoes, I'd likely be following the same kind of protocol they've laid out.

But I do think you should absolutely look at further treatment or trials.

good luck!

dian in spokane

stageIV NED 2 +yrs

My surgical Melanoma Specialist sugested I checkout what the Radiologist had to say about Radiation to attempt to clear out aany residual melanoma cells after the extensive groin surgery.  When I asked about radiations effects of melanoma, he said that meanoma was highly resistant to radiation and that the main benefits for using it was to reduce some of tumor load and to TRY to mop up cells that had escaped the ssurgery.  I talked to two radiologists and people that had recived radiation to the area they would radiate on me.  From the side effects of the radiation on my particular areas, I said< NO THANKS".

    Radiation after surgery is not to cure one, it is to try to reduce the the chances  of a reoccurance   My fear, for my case, was that the radiation effects would be worse  on my remaining quality of ife than the melanoma.

   At any stage a Clinical trial is always an option to try helping melanoma patients in the future (and hopefully the ones now participating)..  We never know what will work  on whom.  This is, at least in hindsight, where statistics helps future patients as to what has what effects are learned.by the medical community.  Many things are not available at stage three except for trials.

My surgical Melanoma Specialist sugested I checkout what the Radiologist had to say about Radiation to attempt to clear out aany residual melanoma cells after the extensive groin surgery.  When I asked about radiations effects of melanoma, he said that meanoma was highly resistant to radiation and that the main benefits for using it was to reduce some of tumor load and to TRY to mop up cells that had escaped the ssurgery.  I talked to two radiologists and people that had recived radiation to the area they would radiate on me.  From the side effects of the radiation on my particular areas, I said< NO THANKS".

    Radiation after surgery is not to cure one, it is to try to reduce the the chances  of a reoccurance   My fear, for my case, was that the radiation effects would be worse  on my remaining quality of ife than the melanoma.

   At any stage a Clinical trial is always an option to try helping melanoma patients in the future (and hopefully the ones now participating)..  We never know what will work  on whom.  This is, at least in hindsight, where statistics helps future patients as to what has what effects are learned.by the medical community.  Many things are not available at stage three except for trials.

I just finished having radiation to mop up cells after surgery.  The tumor board had met and basically would not give a recommendation but felt I should look into it and make my own decision.  I met with a radiologist in Charlotte who was well versed on my particular case. He had done some research and told me that in Australia they have been doing a study on radiation and melanoma. The results are not in yet.  He had gathered from doing extensive reading that radiation has been found useful with cleaning up possible loose cells in the lymph node areas.

My particular case was that the tumor was on the ulnar nerve and they had decided to save the nerve – I am stage IV so my case is different.  They did a dosage where it was felt to not impact the nerve and to cause no nerve damage.  I did get minor lymphodemia and am now seeing a specialist and wearing a compression garment. I had the fatigue and also ended up with a burn (I believe that most do).  I am feeling much better now, radiation ended approx a month ago.

I weighed the pros and cons and decided that it was worth the chance in my particular case.  This was the 2nd recurrance in the same area. Since I'm currently NED systemic options were not available.  Scans in 3 weeks so hopefully I'll find that this has helped!

With melanoma you just have to make a decision based on the best knowledge you can gather and just not look backward.

Linda   Stage IV since 06, currently NED

I just finished having radiation to mop up cells after surgery.  The tumor board had met and basically would not give a recommendation but felt I should look into it and make my own decision.  I met with a radiologist in Charlotte who was well versed on my particular case. He had done some research and told me that in Australia they have been doing a study on radiation and melanoma. The results are not in yet.  He had gathered from doing extensive reading that radiation has been found useful with cleaning up possible loose cells in the lymph node areas.

My particular case was that the tumor was on the ulnar nerve and they had decided to save the nerve – I am stage IV so my case is different.  They did a dosage where it was felt to not impact the nerve and to cause no nerve damage.  I did get minor lymphodemia and am now seeing a specialist and wearing a compression garment. I had the fatigue and also ended up with a burn (I believe that most do).  I am feeling much better now, radiation ended approx a month ago.

I weighed the pros and cons and decided that it was worth the chance in my particular case.  This was the 2nd recurrance in the same area. Since I'm currently NED systemic options were not available.  Scans in 3 weeks so hopefully I'll find that this has helped!

With melanoma you just have to make a decision based on the best knowledge you can gather and just not look backward.

Linda   Stage IV since 06, currently NED

I am the husband.

Thank you all for the advice.

I am the husband.

Thank you all for the advice.

I am just wondering how your trip to see Dr. Logan went? My sister is stage 4 metastatic melanoma and is a patient of his.  He has not recommended any clinical trials or any alternatives or hope.  We switched to him in hopes that being privy to the latest melanoma research may help, but it has not seemed to be too helpful for us. I hope your visit went well. I am interested to hear if you felt it as worth the second opinion.

I am just wondering how your trip to see Dr. Logan went? My sister is stage 4 metastatic melanoma and is a patient of his.  He has not recommended any clinical trials or any alternatives or hope.  We switched to him in hopes that being privy to the latest melanoma research may help, but it has not seemed to be too helpful for us. I hope your visit went well. I am interested to hear if you felt it as worth the second opinion.