WLE and SNB update

Pat,

Good luck with your next round of surgery.

You can review my profile.  It sounds similar to yours, except they never got clear margins.

After WLE and inquininal lymphadectamy, they kept drains in the lymph area for a few weeks as long as they were draining a certain amount each day.  The second surgery was looking for the main lymph node in the area and they took out 20 or so nodes, but since the main one was negative, they did not remove all of the nodes.  I was healing up nicely after the surgery at the end of May.  Took the month of June off on short term disability.  My leg was bandages in a soft cast for a while to let the skin graft heal. Progressed from Wheelchair, to crutches to cane.  kept walking each day, as much as possible.  By mid July i was feeling pretty good and could walk for 2 miles and bike for 7 miles, although not on the same day.  Things were healing nicely until I started radiatoin treatment.  That really tore up the skin graft and it still has not fully healed.  My pain was not too bad after surgery, but hey, when you have a morphine drip hooked up to a button, it is easy to press that sucker to avoid any pain.  The pain got worse as the radiation progressed.

I still have lymphadema in my leg and have a compression stocking on the lower calf and a size G tubigrip on the upper thigh to aid in compression as well as keep the wound dressing in place.  My tumor was just above my knee, but the total skin graft area was something like 10cm x 21 cm, which is quite large in my opinion.  Don't know how long I will have lymphadema.

As far as nutrition to boost your immune system, you should be able to find other postings on this board.  I have not pursued that option as vigorously as I should and my exercise level has dropped to almost nothing until my leg has healed and I dont walk with a limp. 

You should check out various clinical trials in your area or nationwide if you dont mind travelling.

http://www.clinicaltrials.gov/ct2/search

You will probably want to make sure they test your tumor for the BRAF mutation to see if you are eligible for those trials.  Also should get your blood tested for HLA-A2 to see if you qualify for other trials.

I looked at the IPI 50/50 trial but decided I did not want the chance to get the placebo.  From what I understand, if you are in the Ipi 50/50 trial and get the placebo, you are prevented from getting compassionate use Ipi after that.  Something to discuss with your oncologist and think about.  They cant put you in the Ipi compassionate use after your surgery until you have some type of reoccurrence.  Lets hope that does not happen.  Most of the clinical trials seem to be geared towards individuals with active disease.  After my surgery, I did not have any active disease and that was one reason I tried the radiation to my leg to mop up any floating mel cells.  I guess that was not of much use since they did a scan a few weeks after radiation ended and found mets in my spine and subq tumors on various spots of my body, including my leg that had radiation.

I hope this information was useful.  if you need any more information, feel free contact me or reply to this posting.

Bill

Pat,

Good luck with your next round of surgery.

You can review my profile.  It sounds similar to yours, except they never got clear margins.

After WLE and inquininal lymphadectamy, they kept drains in the lymph area for a few weeks as long as they were draining a certain amount each day.  The second surgery was looking for the main lymph node in the area and they took out 20 or so nodes, but since the main one was negative, they did not remove all of the nodes.  I was healing up nicely after the surgery at the end of May.  Took the month of June off on short term disability.  My leg was bandages in a soft cast for a while to let the skin graft heal. Progressed from Wheelchair, to crutches to cane.  kept walking each day, as much as possible.  By mid July i was feeling pretty good and could walk for 2 miles and bike for 7 miles, although not on the same day.  Things were healing nicely until I started radiatoin treatment.  That really tore up the skin graft and it still has not fully healed.  My pain was not too bad after surgery, but hey, when you have a morphine drip hooked up to a button, it is easy to press that sucker to avoid any pain.  The pain got worse as the radiation progressed.

I still have lymphadema in my leg and have a compression stocking on the lower calf and a size G tubigrip on the upper thigh to aid in compression as well as keep the wound dressing in place.  My tumor was just above my knee, but the total skin graft area was something like 10cm x 21 cm, which is quite large in my opinion.  Don't know how long I will have lymphadema.

As far as nutrition to boost your immune system, you should be able to find other postings on this board.  I have not pursued that option as vigorously as I should and my exercise level has dropped to almost nothing until my leg has healed and I dont walk with a limp. 

You should check out various clinical trials in your area or nationwide if you dont mind travelling.

http://www.clinicaltrials.gov/ct2/search

You will probably want to make sure they test your tumor for the BRAF mutation to see if you are eligible for those trials.  Also should get your blood tested for HLA-A2 to see if you qualify for other trials.

I looked at the IPI 50/50 trial but decided I did not want the chance to get the placebo.  From what I understand, if you are in the Ipi 50/50 trial and get the placebo, you are prevented from getting compassionate use Ipi after that.  Something to discuss with your oncologist and think about.  They cant put you in the Ipi compassionate use after your surgery until you have some type of reoccurrence.  Lets hope that does not happen.  Most of the clinical trials seem to be geared towards individuals with active disease.  After my surgery, I did not have any active disease and that was one reason I tried the radiation to my leg to mop up any floating mel cells.  I guess that was not of much use since they did a scan a few weeks after radiation ended and found mets in my spine and subq tumors on various spots of my body, including my leg that had radiation.

I hope this information was useful.  if you need any more information, feel free contact me or reply to this posting.

Bill

Good to hear your update. It looks like Bill has covered things pretty well so there's not much to add.

I've not had to deal with a total lymph node dissection, but I do know from my years here that those who do the best, have the least problems with lymphadema and other issues, are those that keep those drains in for a long time..as long as they are giving any output at all.

Treatment choice is a struggle, but it sounds like you are getting all the facts, and you'll make the right choice.

As far as supplements, I'd reccommend Turmeric, and Vitamin D3.

There's a book out there called the PH Diet that you might want to look into as well, if you have the kind of personality that can stand an complete change in diet (I'm don't! ) You can find out a lot about it on the web too.

I'm glad to hear that your PET results were good, and that you are not dealing with organ involvement.

Good luck with your recovery from these surgeries, and making your next decisions.

dian in spokane

Good to hear your update. It looks like Bill has covered things pretty well so there's not much to add.

I've not had to deal with a total lymph node dissection, but I do know from my years here that those who do the best, have the least problems with lymphadema and other issues, are those that keep those drains in for a long time..as long as they are giving any output at all.

Treatment choice is a struggle, but it sounds like you are getting all the facts, and you'll make the right choice.

As far as supplements, I'd reccommend Turmeric, and Vitamin D3.

There's a book out there called the PH Diet that you might want to look into as well, if you have the kind of personality that can stand an complete change in diet (I'm don't! ) You can find out a lot about it on the web too.

I'm glad to hear that your PET results were good, and that you are not dealing with organ involvement.

Good luck with your recovery from these surgeries, and making your next decisions.

dian in spokane

Hi Pat,

I too am in a similar situation, recovering from groin lymphadenectomy as we speak.  To answer your PET scan question, I asked my doc that question, and she said that a PET only can detect tumors that are at least 1 cm.  In my opinion, that's pretty large, and therefore smaller tumors/nodes may go undetected. 

Hope this helps,

ChristineL

Hi Pat,

I too am in a similar situation, recovering from groin lymphadenectomy as we speak.  To answer your PET scan question, I asked my doc that question, and she said that a PET only can detect tumors that are at least 1 cm.  In my opinion, that's pretty large, and therefore smaller tumors/nodes may go undetected. 

Hope this helps,

ChristineL

Hi Pat,

I'm fairly new here so I don't know all the abbreviations/terms for everything,so please be patient with me. 🙂  I'll just try to share what I've gone through so far and hope you find it helpful. 

My original biopsy site/mole that came back as melanoma was on my left leg just below my knee.  After the initial biopsy came back as melanoma, I had a rather large bit of tissue around it removed to get clear margins and had a sentinal node biopsy.  My sentinel node came back as positive so just last Monday (18th) I had the rest of my inguinal nodes dissected on that side.  I'm still very bruised and very much in the active healing stage.  Today I had my staples removed from my incision and right now the plan is to remove my drain on Thurs.  They originally planned to remove my drain yesterday but I requested it be left in longer because it's been very helpful in keeping my swelling in check.  The doc agreed and will re-evaluate on Thurs.  I plan on asking that it be kept in as long as possible.  So far having it and just keeping my leg up when I'm sitting/lying down has been very helpful for me.  I'm really worried about the prospect of lymphedema so am trying to do everything I can early on to hopefully minimize it!

My stage hasn't been determined yet but from what I know about the things removed from me so far, I think at best I'll be Stage 3.  I see the surgeon next week to get results from this most recent surgery and then will go from there.  I haven't seen an Oncologist yet, but should be soon and expect to begin on Interferon.  I understand what you mean when you say you're not sure you've been aggressive enough…I feel like this process is taking forever!!  Besides what the medical specialists are doing, my biggest focus has been on nutrition and boosting my immune system as best I can as naturally as I can.  Personally, I take Vitamin D3, Vitamin E, and a B complex vitamin as well as making sure I get enough fiber and I take a fish oil supplement.  I'm not a doctor so I won't tell you to take these things, but it's what I've done to work towards my goal of keeping my body overall as healthy as I can.  I also eat a lot of organic fruits & vegetables and whole grains as well as fish & chicken and stay away from processed food as much as I possibly can.  I feel very strongly about using nutrition as a tool for healing and right now I'm reading a book on a macrobiotic diet which I'm finding interesting.  I really miss exercise right now but hope to be able to get back to some sort of exercise soon – even if just stationary bike or walking.  I was a very active person before melanoma and I plan to be one after!  The only other immune boosting things I try to do are get good quality sleep and try not to stress too much…easier said than done as I'm sure you understand, but stress inhibits your immune system so I try to avoid it as much as possible.  I also love this site for info but try not to visit it too much because sometimes I find the information overwhelming and then I have a hard time sleeping…  I'd probably understand all the abbreviations more if I spent more time here though..lol..

Anyway, that ended up longer than I meant… I hope you find something in there helpful!

Take Care,

Monica 🙂  BBes bbbbbfffedew

Hi Pat,

I'm fairly new here so I don't know all the abbreviations/terms for everything,so please be patient with me. 🙂  I'll just try to share what I've gone through so far and hope you find it helpful. 

My original biopsy site/mole that came back as melanoma was on my left leg just below my knee.  After the initial biopsy came back as melanoma, I had a rather large bit of tissue around it removed to get clear margins and had a sentinal node biopsy.  My sentinel node came back as positive so just last Monday (18th) I had the rest of my inguinal nodes dissected on that side.  I'm still very bruised and very much in the active healing stage.  Today I had my staples removed from my incision and right now the plan is to remove my drain on Thurs.  They originally planned to remove my drain yesterday but I requested it be left in longer because it's been very helpful in keeping my swelling in check.  The doc agreed and will re-evaluate on Thurs.  I plan on asking that it be kept in as long as possible.  So far having it and just keeping my leg up when I'm sitting/lying down has been very helpful for me.  I'm really worried about the prospect of lymphedema so am trying to do everything I can early on to hopefully minimize it!

My stage hasn't been determined yet but from what I know about the things removed from me so far, I think at best I'll be Stage 3.  I see the surgeon next week to get results from this most recent surgery and then will go from there.  I haven't seen an Oncologist yet, but should be soon and expect to begin on Interferon.  I understand what you mean when you say you're not sure you've been aggressive enough…I feel like this process is taking forever!!  Besides what the medical specialists are doing, my biggest focus has been on nutrition and boosting my immune system as best I can as naturally as I can.  Personally, I take Vitamin D3, Vitamin E, and a B complex vitamin as well as making sure I get enough fiber and I take a fish oil supplement.  I'm not a doctor so I won't tell you to take these things, but it's what I've done to work towards my goal of keeping my body overall as healthy as I can.  I also eat a lot of organic fruits & vegetables and whole grains as well as fish & chicken and stay away from processed food as much as I possibly can.  I feel very strongly about using nutrition as a tool for healing and right now I'm reading a book on a macrobiotic diet which I'm finding interesting.  I really miss exercise right now but hope to be able to get back to some sort of exercise soon – even if just stationary bike or walking.  I was a very active person before melanoma and I plan to be one after!  The only other immune boosting things I try to do are get good quality sleep and try not to stress too much…easier said than done as I'm sure you understand, but stress inhibits your immune system so I try to avoid it as much as possible.  I also love this site for info but try not to visit it too much because sometimes I find the information overwhelming and then I have a hard time sleeping…  I'd probably understand all the abbreviations more if I spent more time here though..lol..

Anyway, that ended up longer than I meant… I hope you find something in there helpful!

Take Care,

Monica 🙂  BBes bbbbbfffedew