Your opinion please

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Sole
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Your opinion please

Post by 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

Catherine Poole
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Re: Your opinion please

Post by 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

Sole
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Re: Your opinion please

Post by 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
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Re: Your opinion please

Post by 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.

Catherine Poole
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Joined: Wed Jan 02, 2008 12:09 am

Re: Your opinion please

Post by 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

Sole
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Re: Your opinion please

Post by 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
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Re: Your opinion please

Post by 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.

Catherine Poole
Posts: 11045
Joined: Wed Jan 02, 2008 12:09 am

Re: Your opinion please

Post by 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

point30
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Re: Your opinion please

Post by point30 » Fri Jul 13, 2018 8:33 am

Sole, I wish you the very best.

Sole and Catherine- I apologize but I will fervently disagree the Canadian health system is not a challenge as you suggest. If you are in need of emergency care it is provided. If you have cancer, care is provided for all. We have free health care for all. Could we have some services faster, sure. But the services are there, for all. If someone needs to wait in triage in an emergency room, perhaps they are not in need of an emergency? But these same people complain. Perhaps more need to call telehealth or see a doctor at an urgent care clinic or perhaps a walk in clinic first? Emergency rooms are for emergencies.

Apologies if this sounds offensive but last time I was in an emergency room with a loved one with extreme breathing difficulty, I looked around and saw people with a runny nose or with a belief they will see a doctor faster. And those same people blame the ER and ER staff when they have to wait as those with more life or death emergencies arrive to the ER. It's not right, ER staff triage you based on life or death symptoms and it is not a first come first served cycle. The last I heard nobody ever died in a Canadian emergency room. If you were in dire emergency health I guarantee they would see you immediately or before someone else, who will then also complain about our system. So no, the Canadian health care system is not a challenge. It's not broken. What's broken are the people who use an emergency room for non emergencies and the challenge is educating people when to go to an Emergency room, or point them to a better alternative.

Sole
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Re: Your opinion please

Post by Sole » Fri Jul 27, 2018 11:43 pm

Dear Point30,

I thank you for your good wishes and wish you the very best in return. Without going into a fruitless debate about the level of care in the Canadian Health System, I have to say that my experience in surgery and oncology in Montreal at CHUM in July 2016 was simply horrific. But granted, it can be horrific anywhere. I cannot disagree with you about the runny noses waiting in Canadian emergency rooms. I was not really sick in my life before my melanoma so I cannot assess what you are describing really although we all have heard how people seem to abuse our system sometimes. Unfortunately, we, in Quebec, unlike other provinces, have seen our level of health care rapidly decline for the past 20 years due to extremely stupid political decisions and narrow views from our elected officials. Here is not the place to explain.

My point precisely is the following: in the US, and most probably from what I have gather, only in the US, is there availability to, for example, MANY clinical trials that give access to the latest «drugs» (read here newest promising technologies in antibody therapies, targeted therapies re: PD-L1, BRAF, NRAS even, etc...) through and with insurance plans. Sure, it is extremely costly for patients to go through those trials. Sure, Canadians may have access to some insurance too. Somehow, if you don't have a private employer, you rely on the public health system (That's my case). In the US, to my limited understanding, you CAN have access to those therapies - even outside clinical trials -, provided you have insurance, which I think is mandatory somehow. So, if you are likely to need Pembrolizumab because you are a melanoma stage 4 patient, they will give it to you, standard of care until your plan covers it (I suspect...). From what I have read in the last two years from my research, it can also be given back if you have initially responded and relapsed later. In other words, you can be re-challenged in the US. But NOT in Canada. This is JUST one example of the possibilities, once your life is really on the line. In the adjuvant setting, as another example, since last November 2017, there is now Nivolumab available to try and save people before they become metastatic in the US. In Canada, we are many years away from even contemplating that possibility. Not only Canada you might say. True. But why is it that 200 km away from my house, some stage 3 high risk US melanoma patients (and soon stage 2 patients through innovative clinical trials being offered) have a real chance of saving their lives and I don't? Because of the way our Canadian society is organized.

When you are faced with a melanoma stage 1b diagnosis like you, odds are definitely in your favour, although having melanoma REALLY SUCKS. I wish you never had to got through this, really. I also wish I had listened to my gut earlier and had this weird wart looking lesion checked out under my right foot, of all places. That's my story, not yours. I am trying to deal with it the best I can every second of my waking days. But Canada, like the UK, cannot publicly afford those outrageously expensive therapies for long. So, sure, stage 4 can have 4 shots of Pembro over three months and see if it works. If not, too bad. But did you know that Canadian stage 4 melanoma patients have to try BRAF inhibitors first because this is how the current protocol is written even if they don't have that mutation? And did you know that studies CLEARLY show that PD-L1 naive BRAF wild type patients respond better if treated firstly with Pembro? Another aberration in the way melanoma care is currently written in Canada (except in Quebec oddly enough, I have to say!). And let's just say that the combination Nivo + Ipi (1 million bucks per patient per year) is very far from being ever available in the public health system of Canada. This is what I mean point30.

Hopefully and I am quite sure, you will never have to be faced with these therapies. In my case, being most likely (and hopeful my pathology report is accurate this time) stage 2b with probably 70-80% of living 5 years, I hope I make it, at least to see my daughter graduate high school in two years time. (And I am by no way undermining other patients with extremely worst prognosis than mine at the moment. I feel for everyone.) But I'm considered high risk of recurrence because of my initial tumour depth and ulceration. And that's really bad. And I have no choice but to realistically look at the possibilities to treat myself if the worst happens. And it's not comforting being a Canadian melanoma patient. Better than 5 years ago, NO DOUBT. But it's 2018 and it feels like being in 2013 today in Canada in the melanoma world. And that's like almost the dark ages. That's my point.

I really wish research continues to advance at the pace it has in the last 5 years and that we can soon be able to reach much higher response rates to treat this dreadful disease. And if it comes to that and I have to, I will do everything necessary to try and save my life in the US even if it means selling all I still own.

Peace

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