Lost Hope

Posted By
Nett
2/9/2018 6:46am
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Replies: 10

My origonal mm lesion appeared on my back in 05, after which they removed with with clean margins,snb, and removal of my lymph nodes under my left arm as a preventive measure, I believe I was staged as 2b.
After no signs of reoccurrences for 12+ years, it returned aggressively in my liver. I am braf pos. and I was put on taf/mek until the tumours became small enough. Then I had the ippi/opdivo which worked very well but I stopped due to toxicity in my liver,then back to taf/mek and just recently finshed two rounds of keytruda until tumour progression exploded in my liver. I am back on the taf/mek. They say there is nothing else they can give me. Are there long responders to taf/out there? Should I just accept this is my last year?

Bubbles - (2/9/2018 - 10:20am)

Hi Nett, 

I am sorry for all you have been through.  The short answer to your question is, YES!!!  While it is very true that for most, tumor work-around starts at about 6-9 months after targeted therapy with the BRAF/MEK inhibitor combo.  However, there are some who are able to maintain on those products for YEARS!!!  Their docs may have to play with different BRAF/MEK products and give alternative dosing schedules (meaning to perhaps give the med this many times a week this week and this many times a week next week....there are lots of ways to do it...but you just don't take it on a regular set schedule day in and day out).  You might look up posts by "Dick K" also "richard".

Per your bio, I see you are in the Netherlands.  I am not terribly familiar with treatment options there but many countries in Europe allow folks to seek treatment in neighboring EU countries if need be....though again, I am not an expert on that by any means.  But, with that hurdle, such as it is....and hoping that you will be well maintained on BRAF/MEK....there ARE other treatment options!!!  Simply adding radiation to lesions can increase response.   Then there are things like LAG-3, HDAC inhibitors, IDO inhibitors...and others that are being added to anti-PD-1 (Opdivo and Keytruda) in clinical trials..often especially for folks who failed on immunotherapy alone.

None of this is easy, I realize.  Use the search bubble on my blog if you are interested in more information on any of the treatments I mentioned.  Talk to your docs about these possible options.  Hang in there!!!  I wish you my best.  Celeste

ed williams - (2/9/2018 - 1:29pm)

Just to add another option to what Celeste has given you is a link to a trial of Nivo + NKTR_214 http://www.onclive.com/web-exclusives/nktr-214-nivolumab-combination-sho...

ed williams - (2/9/2018 - 8:23pm)

I came across this article which shines a light on the big picture of Oncology research, worth the read especially the finding section at the end!!!https://academic.oup.com/annonc/article/29/1/84/4693829

Swanee - (2/10/2018 - 1:07am)

Hi Nett:)

NO, this is not your last year and there are other treatment options for you when doctors no longer can provide you with their best medicine!

I believe my first melanoma was about 2005 and Iwas  misdiagnosed as a blood blister.

I becamed acquainted with melanoma in 2010 after being diagnosed stage 4 with unknown primary.

I had the fortunate experience to have a very dear friend from England, who immediately came to help and stayed with me for 6 months.  She did very careful research and suggested the Budwig diet and introduced me to the regimen.  The Budwig diet is well known in the naturopathic community and has had great success in many cancers.  It's also the one common trait I have in common with long time melanoma survivors. It's not harmful to your body and costs very little and does not involve a pharmaceutical company.  It's also very good for everyone in your family as a preventative measure against cancer and wellness.

While I do not live cancer free, I have continued to enjoy a great life.  I believe I have created an enviornment that cancer finds difficult to thrive in and so continues my longevity, whatever I can do to increase my years with quality of life is good for me!  My doctors continue to be amazed at my slow progression and deny that flax oil can play a part of that?  But I disagree!

I think this is a safe and effective alternative when everything else has failed.  There are mild side effects getting your system use to the regimen but it is simple and effective and is life saving in my case and many others who I've been in contact with on this website!

You can go onliine to find the info, it is widely available and again is a very natural effective way to fight back against cancer.  

Good luck, wishing you all my best in your journey!

Swanee

 

Bubbles - (2/10/2018 - 3:40pm)

Well Nett, 

While I don't think taking flax seed oil, avoiding margarine and meats, having cottage cheese and lots of fruits and veg will do anyone any harm....sadly....(cause Damn!!!  That's pretty much what I ate before melanoma and after...and we know how that's worked out!!!)...I don't think it is going to do your melanoma any harm either!!

Here's what the Memorial Sloan Kettering site has to say about the Budwig Diet:

"Although Budwig wrote books and papers to provide anecdotal evidence and biochemical mechanisms of the diet, no clinical trials have been published in any peer-reviewed medical journal. Polyunsaturated fatty acids, like omega-3 found in flaxseeds, have been shown to exert anticancer activities, but there is no evidence that such a diet has any benefit in preventing or treating cancer in humans. Whereas a balanced diet consisting of vegetables and fruits can be beneficial for general health, restricted diets may increase risk of nutritional deficiencies. High levels of sun exposure can result in increased risk of sunburn and skin cancer.

The Budwig diet is not recommended by most mainstream cancer treatment centers."

Here's what good old Wikipedia has to say:

"Budwig claimed that within 3 months, some patients on this diet had smaller tumors, some had no tumors left, and all felt better.  However, there is no reliable evidence supporting Budwig's claims, and no scientific evidence that the Budwig diet helps people with cancer. There is no indication for using anti cancer diets and they can cause adverse effects. People with cancer who delay or forgo effective treatments as a result of using diets such as the Budwig Diet might suffer relapse, experience unnecessary disease progression, and experience continuing cancer-related symptoms."

And yep!  Budwig's Diet made the list of "unproven and disproven" cancer treatments:  https://en.wikipedia.org/wiki/List_of_unproven_and_disproven_cancer_treatments  

So...while I don't think Budwig's Diet will do you harm as long as you are still attaining treatment for your melanoma in more effective ways....I guess you'll have to do what you think is best.  

Check out the links Ed shared.  There are really more effective options out there....as well as folks who have been maintained for years on BRAF/MEK.  Remember Dick K (also Richard) that I told you about?  Check out his post here:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/happy-anniversary-me  

Hang in there.  Celeste

Nett - (2/10/2018 - 4:19pm)

Thank you to everyone that responded with all the thoughtfulness and links to the all the information. I definately will do some more reading and give everything mentioned careful thought. My kids are my world and I will do my best to hold on as long as I can.
Nett

Nett - (2/10/2018 - 4:19pm)

Thank you to everyone that responded with all the thoughtfulness and links to the all the information. I definately will do some more reading and give everything mentioned careful thought. My kids are my world and I will do my best to hold on as long as I can.
Nett

Nett - (2/10/2018 - 4:19pm)

Thank you to everyone that responded with all the thoughtfulness and links to the all the information. I definately will do some more reading and give everything mentioned careful thought. My kids are my world and I will do my best to hold on as long as I can.
Nett

Nett - (2/10/2018 - 4:19pm)

Thank you to everyone that responded with all the thoughtfulness and links to the all the information. I definately will do some more reading and give everything mentioned careful thought. My kids are my world and I will do my best to hold on as long as I can.
Nett

marta010 - (2/12/2018 - 1:43pm)

HI Nett - my husband has been treating with Dabrafenib (Tafinlar) for more than 4 1/2 years, and,while he still has tumor activity, it has been stable for a very long time.  He is on 3/4 dose and has been at that level for at least 3 years.  He did have immunotherapy concurrently at one point but stopped due to side effects.  Best wishes.

Ann