oocn

You're in a fairly similar situation I was in June of 2016. First, to reassure you, there are options. 

I had a 5 cm chunk taken out of the scapha on my ear, thats the flat bit right below the helix and initially it was such a large chunk that we had a serious conversation about taking the entire ear off and replacing with  a prosthetic. (** I know of two other people who have had their entire ear's taken and it is really tough to tell the difference)

I objected and accepted that even if my ear were to take more of a squared off blob I'd be more comfortable with the real thing if the plastic surgeon could rebuild it. It was pretty remarkable, they were able to take cartiladge from inside my ear, rebuild the helix and the scapha and cover it with a flap of skin from the back of my ear. Today, more than 2 years later when people where the melanoma was removed they're truly shocked to hear it was on my ear as it is nearly indistinguishable..from the front. My neck dissection scar is another story ha ha. But I've had plenty of barber shop comments. 

Frankly I think the elf ear is hilarious, but both options you described seem reasonable. I'd ask what the surgeon felt better performing. For it all to heal properly definitely follow their care instructs to the letter. You'll have to hear this big white cup looking thing for a few weeks..but hey, beats the alternative. This was all done at the University of Utah. 

One of my nodes was positive, I'm over a year out from finishing a Keytruda trial and still NED. Have faith, stay positive, the people who make up this forum are a truly incredible resource. 

Holler with any other questions and best of luck. 

Rob, what is so unfortunate is the negativy that is being drawn to this board by accusation, speculation and quite frankly conspiracy formulation. Many hundreds, I bet you actually thousands visit this board looking for hope and positivity. Bubbles and Ed have done a tremendous amount over the years in supporting us visitors and members. When you start making accusations about drug companies trying to bury facts or block research and progress it becomes very apprent to the readers here that there is a second agenda that is being pushed.

There is no grand conspiracy. There is also no silver bullet. Cancer is real, it is ever moving and calculating. This board provides a very real chance to many to try and take a step one foot in front of its curve. Our lives have been prolonged because we are proactive. 

If you researched the mere volume of fact and information that Bubbles and Ed have provided to members of this board alone, I think you'd come to the conclusion that they have not been proped up by Big Pharma to push drugs (which for the first time in decades – ACTUALLY SAVE LIVES). I think you'd find that they know information is power, and they're just trying to share it. 

Best wishes to you and your prolonged health. Every singular victory against melanoma is indicative of a larger battle won. 

So a couple of things for you here. First, I'm sorry you're experiencing this. I'm about 2 months off 1 year of pembro, and can relate to what you're describing. I did not have the combination therapy, but my thinking here is that the two drugs have doubled down on a pain that I have similarly experienced. 

I can describe a similar pain in my stomach and abdominal region, that had no relation to my pancreas, or ulcers, or values in my cbc/comprehensive metabolic blood levels. 

For me it was all related to what I ate. In fact, I narrowed it down to dairy. Every time I ate eggs/milk/cheese, say for breakfast I would feel the discomfot where I had to lay down. Sometimes, Gas X/simethicone would do the trick. Very infrequently, I would be sick to my stomach. 

So here's what my onc suggested – dairy intolerance potentially relating to the pembro. My immune system was so revved that it impacted my GI system adversely. Pretty odd, and he was not 100% certain this was the case, but I really really reduced dairy and have not experienced it in months.

Your situation may not be related to any food, and testing/talking to your onc and team is without a doubt the first best way to approach this. 

Nashvillian, very glad to hear that you've been randomized to Nivo! I'm another stage 3b patient here. Original site was on the ear, all nodes on one side of the neck removed. I'm on a different trial but recieving Pembrolizumab. Currently at 16 of 18 treatments and feel great. Best wishes to you throughout this journey. The drug both you and I are on is moving the needle for current and future patients. God Bless!

No one here is going to sugar coat this for you, the figures that you noted do not present with good prognostic indications. However; there is no way of knowing how far this disease has spread until you have subsequent staging done.

So you'll undergo a Sentinel Lymph Node Biopsy to determine your lymphatic staging. If that is negative (Hopefully it is!!) then you could look into clinical trials for Stage II. If it is positive, then they'd reccomend either further surgery for purposes of a clinical trial (this would be a removal of all of the lymph nodes in the are and not just a few like the Sentinel Node Biopsy). 

My entire take away is this:

1. Make sure you are being seen by a Melanoma specialist.

2. Every individual is different, and just because your primary was deep does not mean you have metastatic disease. 

3. The comment above mine says you should be "worried". My advice is to save your energy from worry until

you know more, until you have a plan with your provider, and until you are doing something. Concern, stress, and anxiety are all normal. No one should tell you how to feel!

Remember- there are statistics that take patients with your prognostic factors and measure their outcomes. In a group of 100 people, those figures may not be very positive. However; every individual is different. Your body responds differently, it may engage its immune defenses in a different way than those 99 other people. It does not mean you are doomed, you do not have enough real time information yet to validate that assumption, but it does mean it's time to get serious and that begins with a specialist. 

My advice from here- perhaps you research a little more the stories of others in your situation on this incredibly resourceful site.

Wishing you my best of luck. 

I just wanted to weigh in and provide the outlook of someone who is younger but was in a similar situation facing this really big decision. Firstly, I had an auxuliary neck node dissection of a primary that was .84 mm deep with a mitotic count of 1, with less than .1mm of focally present cells in 1 sentinel node. I immediately went from 1b to 3b. 

There are three reasons I opted for the CLND. #1 – it opened up my avalibility for the clinical trial I am currently enrolled. #2 – I recognized that there could be** more cells located within non-sentinel nodes, even though it was unlikely. Fortunately that was not the case. #3 – being realitvely young I believed that I had a really really great chance at rehabing.

These are all considerations I personally made, it is ultimately a very personal decision and not looking back and wondering "what if I did (xyz)" is crucial to staying on top of this thing even though it's tough. 

My onc really stressed the importance of an "insurance policy". If there was a greater than 50% chance of it coming back statistically, I knew I had to do something. That is not the case for all stage 3 stratifications, so it is really important to think about. 

Currently on keytruda every three weeks – feeling great, just a bit tired every now and then. Keeping a positive mindset all the time!

Sending thoughts and prayers your way. Good luck and God Bless.

Exercise, intense physical activity, has been crucial in managing any therapy related side effects of the pembro I've been taking.

Really as far as side effects go, and it's still relatively early in my treatment (x4 doses), fatigue seems to be the big one.

I try and make the gym at least 4 days a week, sometimes 5–or I'll swap that 5th day out with an outside winter activity. I certainly understand that not everyone on this forum is able to do so, or move as much and that maybe the side effects of surgery or therapy or even disease itself which limits.

Whenever I get down, or even worry about 'what could happen' I go for a run and it honestly helps to reset my thinking and that worry function.

But hey, that's just my two cents. Hopefully others find similar benefit.

Exercise, intense physical activity, has been crucial in managing any therapy related side effects of the pembro I've been taking.

Really as far as side effects go, and it's still relatively early in my treatment (x4 doses), fatigue seems to be the big one.

I try and make the gym at least 4 days a week, sometimes 5–or I'll swap that 5th day out with an outside winter activity. I certainly understand that not everyone on this forum is able to do so, or move as much and that maybe the side effects of surgery or therapy or even disease itself which limits.

Whenever I get down, or even worry about 'what could happen' I go for a run and it honestly helps to reset my thinking and that worry function.

But hey, that's just my two cents. Hopefully others find similar benefit.

Exercise, intense physical activity, has been crucial in managing any therapy related side effects of the pembro I've been taking.

Really as far as side effects go, and it's still relatively early in my treatment (x4 doses), fatigue seems to be the big one.

I try and make the gym at least 4 days a week, sometimes 5–or I'll swap that 5th day out with an outside winter activity. I certainly understand that not everyone on this forum is able to do so, or move as much and that maybe the side effects of surgery or therapy or even disease itself which limits.

Whenever I get down, or even worry about 'what could happen' I go for a run and it honestly helps to reset my thinking and that worry function.

But hey, that's just my two cents. Hopefully others find similar benefit.

Good note here on Pembro being tested as frontline, my onc seems to think it will be the go to frontline down the road.

60%, is perhaps, an outdated statistic for certain stage 3 stratifications. Say for example you had micrometastatic acitivity in just one sentinel node located under the armpit or in the groin, coming in at a 3a. Your risk is much lower than say even a 3a where micromets where found in the neck nodes.

You are entirely correct though for bulky stage 3b and 3c, where those rates are even higher.

Realistically everyone is different- ultimately the great news is that reccurance rates for stage 3 have trended down since ipi and new stats came out. That is a great thing!

Good note here on Pembro being tested as frontline, my onc seems to think it will be the go to frontline down the road.

60%, is perhaps, an outdated statistic for certain stage 3 stratifications. Say for example you had micrometastatic acitivity in just one sentinel node located under the armpit or in the groin, coming in at a 3a. Your risk is much lower than say even a 3a where micromets where found in the neck nodes.

You are entirely correct though for bulky stage 3b and 3c, where those rates are even higher.

Realistically everyone is different- ultimately the great news is that reccurance rates for stage 3 have trended down since ipi and new stats came out. That is a great thing!

Good note here on Pembro being tested as frontline, my onc seems to think it will be the go to frontline down the road.

60%, is perhaps, an outdated statistic for certain stage 3 stratifications. Say for example you had micrometastatic acitivity in just one sentinel node located under the armpit or in the groin, coming in at a 3a. Your risk is much lower than say even a 3a where micromets where found in the neck nodes.

You are entirely correct though for bulky stage 3b and 3c, where those rates are even higher.

Realistically everyone is different- ultimately the great news is that reccurance rates for stage 3 have trended down since ipi and new stats came out. That is a great thing!

I had a bit of pain 3 weeks following as well, mine was also associated with an infection I got from the incision. That was the worst I experienced.

Essentially the same problems that you have now, being unable to lift your elbow and the weakness you'll have in that arm, I had as well. Lifting a milk jug was difficult, but with PT I can now easily do all of that including a weight lifting routine at my gym. It really gets better with time.

Good luck with your Onc. meeting, I have been on anti-pd1 and am handling it well.