brendon

Hi Jeff, 

I am also in Seattle, being treated at SCCA and on Keytruda. I will have my 5th infusion on Tuesday this week and just got the results of my first CT scan since starting Keytuda and it looks like it’s working for me. I previously had Ipi/Nivo but had to stop after three doses due to side effects, and the cancer progressed while I was off treatment.

Like you guys, I am keeping the BRAF targeted drugs as a potential future back up plan..

i recently went through a similar decision process when contemplating what to do after a ‘fail’ on the Ipi/nivo, including considering trials. My wife and I took a trip to Memorial Sloan Kettering in New York for a second opinion to help with the decision. Ultimately I decided on Keytruda as the next step for me. 

Happy to discuss this further if you think it might be of any help.

Brendon

Hi there…  it may be nothing but my advice is to have it checked out by a dermatologist who deals with skin cancers…  just to be safe,

Thanks for sharing this Tex, a great idea. I had a Keytruda infusion today too – my 4th. I call it my 'healing juice'. Up here in Seattle I have a similarly unremarkable experience with the infusion. Two differences in the procedure 1) no saline drip while waiting for the pharmacy delivery, and 2) no room service food (although they do offer to get snacks/water).

Hi Shannon, I was NED for exactly 10 years before recurrence. Original was stage 1a with negative Sentinel Node Biopsy. Stopped seeing oncologist after eight years. Developed lymphedema more recently and check ups confirmed stage 4:( 

I did not have to face this decision as I recently jumped from stage 1 (negative SLNB) to stage 4. I have been reading and watching everything melanoma related as I can. I recall one seemingly reputable doctor saying he thought CLNDs were crazy as cancerous lymph nodes are doing exactly what they should be doing – filtering bad cells. If you have cancer in your lymph nodes it means they are doing their job – holding on to them and trying to get rid of them. If you take them out, you impare the body's natural ability to heal itself. He prefers systematic treatment and maintaining an intact lymphatic system. I will search for the reference when I have a clear head in the morning. But wanted to put it out there in case others had heard this. I am not surprised if it a controversial point of view as it seems to buck convention but it did appeal to my common sense filter. If nothing else it might tee up a good question for your oncologist.

Hi Jeff, I sent you an email a couple of days ago. Mine is brendon_lynch@hotmail.com. 

Yes, definitely keep an eye on it. Look out for the lymphedma worsening. Look out for palpable lymph nodes (I could eventually feel a few hard lumps in the groin). Do what you can to keep your immune system strong through diet, stress reduction, sleep, etc. Even if there are a few stray cancer cells in your system, a strong immune system can knock it down, like mine seems to have for a decade.  But also live your life 🙂

Yes – the lymph issues began about two years ago with swelling in the ankle of the leg where the primary tumor was. My doctor was concerned and ordered a CT scan at that time – the nodes looked normal. Just over a year later, the lymph issues were much worse and I decided to go back to my onccologist at that time.

I was referred to an oncologist for a consult after my diagnosis and he recommended annual follow up. I am wondering if it was a factor that I was close to T2a and the lesion was 0.96mm.

Not sure how i managed to post my comment four times (guess it had something to do with hammering the button when it did not seem to be responding :)) – apologies for that.

Yes, we have pretty much gone organic vegan as well. Eliminated meat, dairy and sugar. eating maing organic vegetables, fruit and whole grains. Including some juciing to get maximum nutrient intake mith minimal churn on the body – allowing for more detox and natural healing of the body. Aslo, having some suppliments including Vit D3, pro-biotic, tumeric, etc. Happy to go into more detail on the what and why if you are interested.

A word of warning, many registered dieteticians, especially in hospital setting, seem to be schooled in the classic food pyramid that is influenced by the food industry and they may not be all that enlightned by the concept of food's role in enabling healing.

My approach is that if I am counting on my immune system to play a big role in getting rid of my mealanoma, then seems to make sense to do what i can to have my immune system working well. Lifestyle factors definatley play a role in that and its also a very empowering feeling – something i can do myself rather than just waiting around to see if the drugs work.