Your opinion please

This moderated forum is to support the needs of patients with stage I & II melanoma, as well as answer questions about treatment options and what to expect.

Your opinion please

Postby Sole » Sat Feb 03, 2018 9:53 am

Hi, (this is the first time I participate on this forum hoping to get some answers. Thank you for your patience with me.)

I live in Montreal, Canada and was diagnosed in July 2016 with amelanotic acral nodular melanoma, Breslow at least 2.85mm, ulcerated, mitoses at least 4, Clark at least 4 (stunned) under my right foot (stunned again). Got my WLE and SLNB in September 2016 and found one lymph node with « rare isolated cells » (stunned a 3rd time). I knew nothing at the time but I know quite a lot more now and I know that my features are really not great to say the least. But I also know that there could be a chance that melanoma stays put for some months or years. If I read correctly the new stats exposed within the new AJCC 8th edition, things seem to be more accurate and more hopeful. The big unknown for me though is the acral part which seems to be less favourable although I think it relates more to late diagnosis than real outcome. My initial docs were really not helpful and really scared me (as if I needed that) and, in consulting different opinions this past year in France where I traveled for work was told to prepare to die and in Australia at MIA that there is a good chance I may never see that coming back again. Needless to say, the possibilities are endless and my despair just grew more because I couldn’t get a clear prognosis.
I pursued vigorously my search to get more answers and did quite a few controversial liquid biopsies, one of which was able to track a low melanoma residual CTC count in my blood. One other test revealed a beginning of prostate cancer which I am now investigating also, as if melanoma was not enough. So far, this test seems to be right on the ball. I also came to understand that pretty much all melanomas growing more than the epidermis will find or grow blood vessels and shed cells in the bloodstream. This is maybe also controversial but my hospital derm confirmed it to me, in between her lines at my initial appointment.

My last research led me to send my SLNB blocks and slides to a private UK company because I wanted to know my PD-L1 expression. To my utter disbelief, they couldn’t find any cancerous cells in my lymph node and the residual melanoma from my WLE did not have enough cells to conduct testing. (strike one). So I reached out to a dutch Dr in Amsterdam who has been conducting research on the prognosic significance of isolated cells in lymph nodes for many years. He looked at my slides and lo and behold, my lymph node does not contain cancer cells! The shock is still very much present as I write. So, it seems that I may well be more of a stage 2b than a stage 3b.

Finally, and thank you for your patience to read me, my questions.

1) Are there any of you stage 2b survivors? According to the current AJCC 8th edition, OS is 85% at 5 years and 80% at 10 years.
2) Does any of you have an idea how to reconcile the fact that 2b is high risk of recurrence (50% +) in light of those stats?
Catherine, can you offer your expert opinion please?

Thanks
Sole
 
Posts: 9
Joined: Tue Nov 29, 2016 10:25 am

Re: Your opinion please

Postby Catherine Poole » Sun Feb 04, 2018 8:18 am

You need to get this straightened out by experts. Have you tried McGill University in Montreal? Here is their information: https://www.medicine.mcgill.ca/dermatol ... ctoria.htm
I am certain they will be your best bet in finding out more. In the U.S. we now have adjuvant therapy available for high risk stage 3. We have plenty of people who have happily survived stage IV disease! Try looking at our video of 6 of these patients here: http://melanomainternational.org/events ... ncIAq6nGM8

Let us know what you find out.
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10957
Joined: Wed Jan 02, 2008 12:09 am

Re: Your opinion please

Postby Sole » Sun Feb 04, 2018 8:56 am

Thank you Catherine for your reply.

I am followed at McGill actually. It’s my alma mater too. I will ask this week on my end. But I thought maybe someone stage 2b could chime in or you could offer your experience with other stories of recurrence rate at 2b.

As you may know (or not), our public health system in Canada is very challenging when it comes to cancer care or any care for that matter. The system is really falling apart. I was at the emergency just yesterday for my daughter and had to wait 9 hours to be seen. And we finally decided to go back home because we were no where near being seen. This is our sad reality. As for the new Opdivo adjuvant treatment approved by FDA last December, we, in Canada, will maybe see it approved at the Federal gov level by the end of 2018, and after that, each province will have to negociate with the pharmaceuticals independently to get it to the clinical practice. So roughly, at the very least another two years before we see nivolumab saving melanoma stage 3 lives here. And at the paste newer treatments are being proven in the melanoma world, Canada will always miserably fail to position itself ahead of the curve and protect its population from this dreadful disease.

Hence, my questions about recurrence at stage 2b become a bit pressing for me. Do I seek additional treatment right now? With my apparent low lymph node burden (if any at all!), do I try to go for nivolumab on my own? All we have here at the moment is interferon and CLND which both have been discarded by up to date scientific research.
Sole
 
Posts: 9
Joined: Tue Nov 29, 2016 10:25 am

Re: Your opinion please

Postby Sole » Sun Feb 04, 2018 12:15 pm

I also looked at your video quite a few times since my original diagnosis. Thank you for all you are doing. This disease is for sure a very lonely road.
Sole
 
Posts: 9
Joined: Tue Nov 29, 2016 10:25 am

Re: Your opinion please

Postby Catherine Poole » Mon Feb 05, 2018 8:08 am

I know the Canadian system is a challenge. But in 20 years I have never seen amelanotic acral nodular melanoma, Do ignore the Clark level, it is not as vital as the Breslow. We have loads of success stories at stage 2b and up. Who do you see at McGill? I will check for a specific contact for you.
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10957
Joined: Wed Jan 02, 2008 12:09 am

Re: Your opinion please

Postby Sole » Wed Feb 07, 2018 1:17 am

I am followed by dr Mihalciou. He’s the expert. I would like to get in touch with stage 2b survivors if possible. Also acral survivors. And I know that my tumour caracteristics are extremely rare. I came across one 25 year retrospective study done on acral survivors and saw listed only 4 people with acral nodular melanoma. My lesion looked like a pyogenic granuloma. Not at all like a melanoma...

Thank you Catherine. Your support is invaluable. I intend to survive this and start raising awareness here where I live. I just don’t want to be consumed by this so it’s still early for now. I had my oncology appointment with Dr M just today. I showed him my findings from dr van Akkoii and he replied that pathology reports are subject to interpretations, etc... Which is true. But there is a world of difference between stage 2b and 3b... I want to talk to stage 2b survivors now...
Sole
 
Posts: 9
Joined: Tue Nov 29, 2016 10:25 am

Re: Your opinion please

Postby Sole » Sun Jun 10, 2018 8:01 am

So to end that part of my story, my current McGill pathologist had my slides reanalyzed and... stage 2b!!!

Hope this new arthritis flare will now go away...

Good luck everyone.
Sole
 
Posts: 9
Joined: Tue Nov 29, 2016 10:25 am

Re: Your opinion please

Postby Catherine Poole » Mon Jun 11, 2018 6:56 am

Thanks for the good news to start our week! Keep in touch.
Catherine M. Poole, President/Founder
Melanoma International Foundation
Catherine Poole
 
Posts: 10957
Joined: Wed Jan 02, 2008 12:09 am


Return to Melanoma Diagnosis: Stages I &II

Who is online

Registered users: Bing [Bot], Google [Bot]