Mamapegela

Speaking strictly from my own experience, the CLND I had at stage 3 and the difficult recovery from it has been my biggest challenge.  I had nerve damage which has led to chronic pain as well as lymphedema.  I understand that no surgery is without the possibility of unintended consequences.  

At the time it is what was recommended so I have no regrets about it, but if it were no longer the standard I would think hard about the decision knowing what I know now.  I did progress to stage 4 despite the nodes being removed and had combo therapy which has led to NED for the past 5 months.  However, I had side effects from immunotherapy too as so many do- I'm now on synthroid and I had severe colitis.  So there are issues with either approach, making the point that the therapies are not at all benign.

Also, aren't people are entitled to thier opinions and even their agendas if they have them, and to be anonymous if they want to?  I have stayed away from here a lot because of this kind of treatment of people, and I just now came back to see what was up.  I'll probably stay away more now.  Posting anon because I don't want hating on me!

Hi Jennifer,

I can truly understand your lament as I have been there- am there- myself.  I too was a runner befor Mel and surgery (CLND left neck) which led to nerve damage, stiff neck and shoulder dusfunction.  I never thought about how the shoulders are involved in running until this and after many tries I have accepted that maybe I need to look in another direction for fitness.  In addition I have aged faster in the past two years since diagnosis but I am at that age where it all accellerates anyway;)   

I have had colitis, uveitis and thyroiditis from the immunotherapy.  Yet, after spending last year watching MEL spread, I am currently NED.   SO I will take this new me and be grateful that there is a me at all.  

It is hard to look back and see pics of that care free (comparatively) younger healthier self, but life gives all of us challenges and losses.  It is good that you are sharing and helping other people to share too.

Thanks and here is to NED for you in the near future too!!

Peggy

Hi Stacijane,

From what you have shared it sounds as though you are a stage 3 at the most.  Stage 4 melanoma has involvement of either distant lymph nodes or  organs.  I believe the person that was speaking of stage 4 having different levels was actually thinking of stage 3 which has a, b or c depending on the level of involvement of the lymph nodes.  So this is hopeful news for you!

Having said that, I am a stage 4 patient who has had complete response to immunotherapy, so there is a ton of hope there too!  After you find a melanoma specialist together you will find a path forward.  Best of luck to you!

Such great news!  It is always encouraging to hear people making it through tough times to NED.  All the best to you.

Peggy

I had been off the site for awhile, trying to catch up I saw this post and my heart just sank.  What an amazing man who brought so much humor and humility to the fight.  What a loss to the world and this forum.

Peggy

Such wonderful news!  Thank you for spreading the sunshine.  I hope the anemia mystery gets solved…

Peggy

Hi-

You have gotten a lot of thoughtful and accurate responses from people- most lung nodules are nothing to worry about.  I just want to offer one view from the other side so that you are the best informed that you can be.  I was diagnosed with a shallow stage 1 melanoma on my neck in november 2015, developed a swollen lymph node in Feb 16 which was biopsied and positive for melanoma.  A subsequent CLND showed three more nodes positive, making me a stage 3C, which is a higher risk than your husband is at.  

My baseline scans at the time showed a few small lung nodules.  I was told the same thing, that they were common to have and not necessarily anything to worry about, but that we would follow them.  A PET scan in August showed no uptake.  A repeat PET scan in October showed all lighting up, and they I subsequently had a VATS which proved melanoma.  

One interesting thing that my oncologist told me is that there is a difference in the quality and detection abilities of different PET scanners, the mobile ones being less powerful than stationary ones.  They usually say that a nodule has to be over 1cm for it to be detectable on PET but none of mine were that large.  My first PET was in a mobile (truck) scanner and my second was at University of Michigan and was a brand new, state of the art scanner.

I am not telling you this to alarm you.  His oncologist will probably want to monitor them for growth (mine were growing) and even if they do prove to be melanoma, I do not think that the wait made a huge difference.  I am now getting ipi/nivo (just nivo now) and they are shrinking again!

Wishing you the best,

Peggy

Hi-

You have gotten a lot of thoughtful and accurate responses from people- most lung nodules are nothing to worry about.  I just want to offer one view from the other side so that you are the best informed that you can be.  I was diagnosed with a shallow stage 1 melanoma on my neck in november 2015, developed a swollen lymph node in Feb 16 which was biopsied and positive for melanoma.  A subsequent CLND showed three more nodes positive, making me a stage 3C, which is a higher risk than your husband is at.  

My baseline scans at the time showed a few small lung nodules.  I was told the same thing, that they were common to have and not necessarily anything to worry about, but that we would follow them.  A PET scan in August showed no uptake.  A repeat PET scan in October showed all lighting up, and they I subsequently had a VATS which proved melanoma.  

One interesting thing that my oncologist told me is that there is a difference in the quality and detection abilities of different PET scanners, the mobile ones being less powerful than stationary ones.  They usually say that a nodule has to be over 1cm for it to be detectable on PET but none of mine were that large.  My first PET was in a mobile (truck) scanner and my second was at University of Michigan and was a brand new, state of the art scanner.

I am not telling you this to alarm you.  His oncologist will probably want to monitor them for growth (mine were growing) and even if they do prove to be melanoma, I do not think that the wait made a huge difference.  I am now getting ipi/nivo (just nivo now) and they are shrinking again!

Wishing you the best,

Peggy

Hi-

You have gotten a lot of thoughtful and accurate responses from people- most lung nodules are nothing to worry about.  I just want to offer one view from the other side so that you are the best informed that you can be.  I was diagnosed with a shallow stage 1 melanoma on my neck in november 2015, developed a swollen lymph node in Feb 16 which was biopsied and positive for melanoma.  A subsequent CLND showed three more nodes positive, making me a stage 3C, which is a higher risk than your husband is at.  

My baseline scans at the time showed a few small lung nodules.  I was told the same thing, that they were common to have and not necessarily anything to worry about, but that we would follow them.  A PET scan in August showed no uptake.  A repeat PET scan in October showed all lighting up, and they I subsequently had a VATS which proved melanoma.  

One interesting thing that my oncologist told me is that there is a difference in the quality and detection abilities of different PET scanners, the mobile ones being less powerful than stationary ones.  They usually say that a nodule has to be over 1cm for it to be detectable on PET but none of mine were that large.  My first PET was in a mobile (truck) scanner and my second was at University of Michigan and was a brand new, state of the art scanner.

I am not telling you this to alarm you.  His oncologist will probably want to monitor them for growth (mine were growing) and even if they do prove to be melanoma, I do not think that the wait made a huge difference.  I am now getting ipi/nivo (just nivo now) and they are shrinking again!

Wishing you the best,

Peggy

Hi-

We have similar situations.  I  have mets only to my lungs at this point.  I progressed to stage 4 in Nov. '16.    I started the ipi/nivo combo in December.  I only got through one dose before my onc nixed further doses due to toxicities (fried my thyroid and liver enzymes elevated).  I am now on just Nivo if I continue to tolerate it.  The good news is- I already have had more than 50% reduction in the size of my two remaining lung mets!  That was from only one dose of the combo becuase my last CT scan was before the first nivo dose.  

So I obviously am giving my endorsement to the ipi/nivo. I will miss my thyroid but I won't miss Mel!!   

Good luck, let us know what you decide.

Peggy

Deb I'm sorry to hear that things are on hold for you again if I understand correctly.  It feels good to be doing something, but letting the body heal and recover IS doing something right? I wasn't offered ketruda but that is interesting. I am thinking of you!

Peggy

Deb I'm sorry to hear that things are on hold for you again if I understand correctly.  It feels good to be doing something, but letting the body heal and recover IS doing something right? I wasn't offered ketruda but that is interesting. I am thinking of you!

Peggy

Deb I'm sorry to hear that things are on hold for you again if I understand correctly.  It feels good to be doing something, but letting the body heal and recover IS doing something right? I wasn't offered ketruda but that is interesting. I am thinking of you!

Peggy