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Different doctors, different approaches ? Germany - U.S.

Different doctors, different approaches ? Germany - U.S.

Posted By
chrispl1974
6/10/2019 12:09am
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Replies: 19

Hi everyone,

I was diagnosed 3a in January 2019 with a 1.9mm non ulcerated , Clark Level III , Mitotic rate 1 , no regression Primary on my right thigh. My 2 SLNs showed traces of melanoma cells. - no CLND .

I am being treated in Germany at one of the top skin cancer centers and I am in my 5th month of a taking BRAF- MEK Combo (Tafinlar - Mekinist)-- full dosis.

Everything fine, monthly checks are fine and so far I was rather calm, since my doctors tell me that I have a good chance of not getting a recurrence.

Due to the fact that I work in the U.S. , but travel extensively to Europe and get all medical treatments in my home country Germany, I also took the advantage to seek a second opinion on my melanoma history from a well published provider here in Minnesota.

Bottom line, he faced me with a rather grim picture, saying that BRAF - MEK only buys me time and if he were to be in my shoes, he would switch to adjuvant immunotherapy and test the primary again for PD-1L.

I looked at the latest stats of the Novartis trial and its true that both placebo and combo curves get closer to each other in year 4, but I hope I currently do more than just buying time !!!

I am very nervous now and start to mistrust the medical team in Germany. Any thoughts or ideas ,which might put a different perspective on the matter ?

Thanks. This forum really helps me to not feel alone !

Take care

Chris


Hi Chris,

It sounds as though your Germany docs are using targeted therapy (your BRAF/MEK combo) as adjuvant therapy. There is good data to support both the use of targeted and immunotherapy in that fashion. Here are tons of reports on both options: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adju...

Yes, most folks with active melanoma disease develop tumor work-around in about 9 months or less on targeted therapy. However, there are those who are well maintained on it for YEARS!!! Noting that the adjuvant setting is a very different animal, here is a primer I put together on basic melanoma treatments that cover both immunotherapy as well as targeted therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=primer

Finally, I'm not sure who you are seeing in Minnesota, but the jury is still out on the value (or not ) of PD-L1 tumor testing. Lots of data shows that despite testing negative for that marker folks still respond to immunotherapy and vice versa. There's a lot of complicated data and research ongoing trying to fully understand that...but, just now simply being positive or not for it is not the "simple answer" as to who responds to immunotherapy that is might seem to indicate.

Hope that helps. As ever in melanoma world, answers are never easy. I wish you my best. celeste

Hi Chris, just to add to what Celeste has given you already, last Summer at 2018 ASCO a peer group of Oncologist's got together and talked about various topics in melanoma on Onclive. The focus of last year was adjuvant treatment and all the new data and approvals. Here are two links from Onclive on the general topic of adjuvant treatment, and if you look down below on the Onclive page you will see #'s, if you click on # 1 it takes you back to the first video in the series and there are 6 pages of videos on the various topics. All the adjuvant stuff is in the first couple of pages. Best Wishes!!!Ed https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/managi... https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/adjuva...

On the Onclive page the #'s at the bottom are actual backwards, where #6 is the oldest videos and # 1 are more current. The adjuvant stuff is located in # 4 and #5 section mainly. I hope that was clear as mud!!!Ed

Hi Chris, one more group of videos, first from fall of 2017 combi-AD trial adjuvant melanoma ESMO peer panel. Second video is from ESMO 2018 with more data and approvals to make comparisons between targeted therapy and immunotherapy Pd-1 drugs in adjuvant setting. https://www.onclive.com/peer-exchange/melanoma-systemic-therapy/combi-ad... https://www.youtube.com/watch?time_continue=49&v=Kx5etJjDxL8

Celeste, Ed,

Thanks a lot for your insights. I have done a fair amount of background reading over the months ,mainly on targeted therapy, since this is what I am being prescribed. The latest data coming out of the Combo trial for Tafinlar-Mekinist maintains an RFS benefit for all Stage III subgroups under the 7h Edition AJCC classification. However, the curves get very close in year 4, if we apply the 8th Edition AJCC classification.

Please look at the attached publication on page 6. There, for patients like me who are IIIA, the RFS benefit is just 4% over the placebo group and one can assume that in year 5, the curves will get even closer or get superimposed meaning ZERO RFS benefit to placebo.

Being an engineer and very familiar with statistical analysis, this is of concern to me.

However, it is true to say that stages IIIb - d paint a different picture.

I look forward to hearing your thoughts.

Take care

Chris

When the experts talk about adjuvant trials there are many different views on the data and how to interpret the data. Here is a pretty good example of leading oncologist talking about 3a patients. https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/initia...

Thanks Ed, I had seen this a while back and it was refreshing to view this panel discussion again.

What I also found troubling is that the German doctors team has been far more optimistic ,along the lines of saying. You are a 3A - low risk no need for CLND, with minimal tumor burden in your 2 lymph nodes (actually I had minor cell groups with a subcapsular penetration depth of up to 2mm in one of the nodes and only 0.5mm in the second). Apparently that means that the size of those micrometastasis is much smaller than the penetration depth. In Germany they did not measure the size of the micrometastasis and when I asked I was told... do you expect us to count the cells ? (German charming empathy :))) ED or anyone else , maybe you have some thoughts on that ? Would help :)

The team here in Minnesota is telling me I am intermediate risk with a 30% chance of recurrence.

Thanks for any input. This discussion puts me at ease.

Keep fighting !

I had a CLND with my SLNB in August 2014, when the SLNB found a trace of melanoma in a lymph node. That CLND did not help me. I wish I had not had it. CLNDs are no longer recommended as much as they were.

Chris,

It would seem to me that you are Stage IIIb...though I don't know that that makes much difference....but for what it's worth. The report you are looking at is the first one I discussed in the link of many such articles about adjuvant treatments that I gave you. Looking at the Kaplan-Meier curves it is clear that targeted therapy is superior to placebo in all aspects. And while the curves do come closer together over time, I suspect the results from the targeted therapy remains significant. The problem with clinical trials (which I've been bitching about for years....even though an adjuvant trial of nivo that I was lucky to gain access to in 2010 after brain and lung mets most certainly saved my life!) are many and varied.
1. We continue to compare things to placebo or treatments that are clearly "lesser" long after it is appropriate to do so.
2. We fail to have the "head-to-head" trials that would provide real info. Like a randomized trial where Stage III patients are given either targeted therapy or immunotherapy so that we can really see what happens.
3. We fail to use consistent outcome measures, so that comparisons are more reasonable. For instance....if you look at the many adjuvant studies I gave you...there is one by Weber using immunotherapy that looks are RFS, but not with the same time frames as the study you are looking at. There are others using immunotherapy with the same time frame, but look at other outcomes.

In the end, I fear you are just going to have to choose what you think is best for you. At this point, it may be best to complete the adjuvant program of targeted therapy that you are on, be vigilant and see what happens...knowing that you can always go on to immunotherapy should you have the need. I know I am not giving you the information you seek, but at this point we just don't know which tact is better for adjuvant care. - targeted or immunotherapy. Still, I know we will get there one day...and you are helping make that happen.

Yours, celeste

Thanks Celeste, Yes, I understand that the sample size in all those trials is questionable and one never knows, if the data after 4 years is representative. Regarding my stage, I am clearly 3A. You mentioned a while back that I might be 3B and as far as staging Europe goes (in line with AJCC) a T2aN2a is a stage IIIA Melanoma ,meaning that any non ulcerated tumor below 2.0mm with up to 3 clinically occult lymph nodes affected is still a 3A. I might be on the upper limit of that staging category ,but it is still a 3A in my books. Please enlighten me, if this is not the case.

Thanks for all your support.

Chris

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Gene! C'mon Man!!! What are you playing at? Folks here are asking legit questions about therapy. If you want to have a thread about ancillary issues, diet, whatever - go ahead. But, I continually fail to understand why you do not help folks by letting them know that as a Stage IV melanoma patient in 2011 you were blessed to gain a place in a clinical trial with ipi and GMCSF. Not only did you get access to treatment, a rare thing back in those days...but you RESPONDED!!! Becoming and maintaining NED status since 2012! What an amazing turn of events for you and yours. What a gift to those melanoma patients who have gained responses and help from ipi since. Why don't you roll with that? You have helped melanoma patients in ways that many never will. Let's continue that!!! Thanks, celeste

My Dear Celeste,

Thank you for reminding me that I am still alive ;-) Just for the record my wife had a male co-worker about my same age, height but was thinner in weight.
He did the same treatment with the same doctor that I did. Unfortunately, he passed away from the treatment. His physical condition on a scale of 1 to 10 (10 being the highest) was about 3. Mine was a 7 or 8. My treatment was very toxic. So to recommend that everybody just go on immunotherapy is perhaps not the real solution if you don't know the whole story behind it.

When I was first diagnosed with melanoma I went on sick leave to reduce my stress levels. Spent every waking hour researching the cause of my melanoma. And guess what I found? It wasn't from to much sunshine. It took me years and hundreds of hours of research to determine the cause and I truly believe that I finally know what caused my melanoma. Lack of sunshine was just one element.

On a different note do you honestly believe they are trying to cure cancer? If so you should go on a day trip to Cleveland Ohio and see all the cancer treatment skyscrapers that are being built. Cancer rates are about the same as when President Nixon declared the war on cancer in 1971. Do you know that there are more people working in the cancer industry than have cancer?

Stress is the leading cause of cancer and this gentleman here may have a very stressful life/job.

Two other things to consider:
According to a recent study by Johns Hopkins, more than 250,000 people in the United States die every year because of medical mistakes, making it the third leading cause of death after heart disease and cancer.

Medical Expenses. A recent Harvard University study showed that medical expenses account for approximately 62 percent of personal bankruptcies in the US.

I have read your story and you are quite an amazing woman with an amazing story. But I would like to remind you that there are more than one way to solve a problem. Most stage 3 melanoma's could be helped just by changing their diet and lifestyle but the oncologist will never tell them that. We are so bombarded with drug ads that most people just think that drugs cure everything. They Don't.

Best wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Thanks for the kind words, Gene. However, I do NOT think there is ONE solution to ANY problem (nor one cause) and that applies a million times over for melanoma. I agree that medical care should NEVER bankrupt anyone - ever. Though, unfortunately, this is the state of medical care in this country far too often. For the rest, I fear we are going to have to agree to disagree. In the United States there will be almost 96,500 new cases of melanoma diagnosed this year. In 2018, there were almost 300,000 new cases of melanoma across the globe. This year, 7,230 melanoma peeps will die in the US alone. Yes, current therapies for cancer are often toxic. Trust me, I am well aware!! I've managed to be a two cancer kind of girl and a provider who has cared for many many patients with various cancers. Still, we cure many more folks than once we did. And, you and I??? We are lucky that the drugs we took gave us our combined 16 years with NED after Stage IV melanoma. I hope some day there are many, many more folks like us. Yours, celeste

Hi Chris,

I was diagnosed with Stage 1b melanoma in August 2013. During my second pregnancy the following year I felt a lump in my groin. I knew the melanoma progressed and a lymph node biopsy confirmed my suspicions. I also went to a doctor at a well-known institute in Minnesota. They performed a lymph node dissection, but because of my pregnancy, I chose to hold off on any other treatments/scans. Long story short, we found out I was Stage IV after my son was born. Mets on my liver, lungs, spine, and many subcutaneous spots. My doctor put me on traditional chemotherapy. The cancer spread. My doctor, in Minnesota, told me to “go home and be with your children (2 years and 2 months) and husband.”

I reached out on this board and with others’ advice, I figured out he/that facility was not the doctor/place for me. I switched my care to MD Anderson. Long story short, I’m NED and doing amazingly well 4.5 years later. Oh, and my doctor, Isabella Glitza, is German!( Perhaps Germans are more optimistic than Americans!)

I know you said you’re a data guy, but this disease is tricky, as is being human in general. I don’t know if I have any advice, per say, but I wanted to share my story for some perspective.

Ashley

Hi Ashley, Thanks for your encouraging reply. I am very happy to hear that you have been in remission for well over 4 years and that your new provider is helping you to stay healthy.
Next month I am travelling to Germany for my next check and I hope that I will get additional info on the subject.

Have a great weekend with your family.

Take care

Chris

Hi Ashley, Thanks for your encouraging reply. I am very happy to hear that you have been in remission for well over 4 years and that your new provider is helping you to stay healthy.
Next month I am travelling to Germany for my next check and I hope that I will get additional info on the subject.

Have a great weekend with your family.

Take care

Chris