Oct 25, 2017 09:20AM Grannax2 wrote:

j1e1n1a. I see you live in Oklahoma, I'm from Oklahoma and have lots of family there. just curious where you get your treatment. I'm in Dallas area now, and have been for over 38 years.

I cannot imagine how frustrating that would be. Progression is scary to think of but if it changed/ mutated to a completely different cancer, I would freak out!

Hope you do well on new TX.

Oct 25, 2017 12:17PM - edited Oct 26, 2017 03:44AM by zarovka

NO1-2NV. I notice you are in NM too. We will generally have to go out of state but neither my doctors at St Vincent's or UNM ever explored out of state trials. You need a trial matching service that looks nationally.

After the first visit, NIH in Maryland will pay your travel and they are one of two or three places with the best immunotherapy trials.

There are several trial matching services. I just learned about emerging med … they are free and match you nationally. https://app.emergingmed.com/emed/home

The cancer research institute matches you nationally to immunotherapy trials.

https://www.cancerresearch.org/patients/clinical-t...

The other way to go is to go for a second opinion at an institute known for their trials like UCSF or MSKCC. MD Anderson is an option, but I had trouble getting through the gate there the one time I pulled that string.

Grannax - Monday was windy but otherwise pleasant and sunny. The super typhoon past in the early morning as I slept and I mostly missed it, which was a bummer. Another typhoon on it's way this weekend as I leave. I learned this week there have been 4 since we were here. Inland its just heavy rain with some wind.

It's Thursday here now and I had my second to last treatment yesterday. Just NKC infusion. Got to the Imperial Palace before the infusion and then headed off to Hakone for Mt Fuji fix. Got to Hakone late last night. Looking forward to a nice day tomorrow… we may actually see the mountain which I understand is not a given.

Anita - I love antelope canyon. Went there last year.

Mom - I appreciate the full report. Extremely worried but hopeful.

Hi Artist. I will take a typhoon over 4 hours in a clinic and 4 procedures, which is what the last day of treatment looks like Friday. It's hard to believe I can do this given where I started with my medical phobia. Amazing what we deal with. All minor IV's and shots but I could do without it entirely for sure.

Welcome Kaption. We're a friendly and upbeat bunch much like yourself.

Lalady - It astonishes me that we don't get a bye on the usual illnesses like the flu … it really does. Feel better and go knock of another chemo treatment. I lost significant weight on two low dose cancer IV's. I am not complaining.

Jena - welcome. Hope Halavan is easy and effective. Most treatment decisions have an element of throwing darts at the board. If you want more precision, consider Rational Therapeutics and Dr. Nagorny. He requires a chunk of tumor the size of the end of your pinky, which is not always available safely.

He tries a bunch of chemo on the actual tumor. Standard chemo-sensitivity training tries to grow your cells from a small sample to get enough for testing This doesn't work. Only 40% of the cancer cells grow in a dish so you miss most of them when you try to grow enough tissue to test with. Gotta getta chunk.

Getting a regular biopsy and genetic testing is another way to refine your options as they have some sense of which drugs respond to which mutations. I have long list of issues with this approach and a long rant at the ready to launch on anyone who gets too peppy about the promise of precision medicine. However, I had genetic testing done myself. I actually got actionable information from the report I am using the information to guide treatment.

Even with all this you will still be flipping coins to some extent.

>Z<

Oct 25, 2017 03:30PM ShetlandPony wrote:

JFL, we think alike. That heating pad might help, and at least it is unlikely to hurt.

Artist, I am so sorry you are having muscle trouble. I want you to be able to do your art and go about your day cane-free. Might you be off abraxane soon? Then hopefully healing will take place. (It's on your chart to never ever give you Cipro again, I hope.) Glad you were there for your beautiful daughter's wedding -- she looks like you-- though sorry it had to be during this chemo.

How interesting about the skin sensitivity and liver mets. About a year ago -- hmm, when progression was starting up -- I started getting a rash on my face from a mild sunscreen that I had been using without a problem. I switched to a zinc oxide one with a tint.

Z, thanks for the idea of employing a PDL-1 inhibitor at the time of Y90. I have added that to my notes.

Whoa, Linda, CEF. May it be easy on you and tough on cancer.

Oct 25, 2017 04:37PM leftfootforward wrote:

Shetland/ Xeloda is notaorious for causibgvreflux. I had to get a prescription to help with mine. Once I was on one I had no problems. Something to look into.

Oct 26, 2017 12:02AM Liwi wrote:

Wonderful pictures Anita, thanks for sharing.