Oct 20, 2017 06:50PM - edited Oct 21, 2017 04:52AM by zarovka

Mom - It is a good question what I mean by Rads. I mean something like Stereotactic Body Radiation Treatment (SBRT). SBRT is a type of radiation that is tuned to provoke an immune response. There may be others.

The RO may feel that she's going to get an adequate immune response with the approach she is taking. You do want them thinking about it and talking about it and explaining to you whether their radiation is going to release neo-antigens. I recalled that some kind of PDL-1 inhibitor is lined up so this radiation treatment is a huge opportunity. They may be thinking this already.

I don't know if the Y90 provokes the immune response in the same way. It doesn't matter as long as she is getting radiation somewhere that floods her system with cancer neoantigens and gives her newly activated immune system something to attack.

Grannax - I've been thinking about your rashes and my rashes . I kinda think my current rashes are a response to the cancer being attacked. These rashes occurred only AFTER the liver mets got hit with chemo and hyperthermia. My skin sensitivity is most likely the liver dealing with the carnage of a dying tumor. I would not be surprised if that is the case for you as the Y90 effect takes a while to play out.

It's a lot like TM's ... more of an indicator that something is going on than exactly what is going on. We interpret them from context and experience. I am expecting you will find that your liver just got upset when it had to deal with the mess after a Y90 treatment ... and took it out on your face. Your liver is likely hard at work tidying things up. We'll know with time.

On a related topic my CEA is developing into a useful took to monitor my cancer. CA 15-3 and 27.29 have been useless for me. Depends what antigens your cancer sheds. Oddly, CEA is rarely reliable with MBC, but here are my last CEA numbers in context. After doubling monthly for several months, my CEA dropped slightly after 2 weeks of low dose chemo combined with hyperthermia.

The purpose of the initial treatment is to down-regulate immunosuppression and not treat the cancer directly. The chemo doses I was taking are not considered an effective dose for treating cancer. The hyperthermia doses I am getting are sufficient to kill cancer directly. Difficult to parse what is causing what, but it is sure nice to see my CEA did not double again.

>Z<

Oct 21, 2017 06:35AM LindaE54 wrote:

Momall - no words of wisdom from me but you certainly are getting info from a lot of smart ladies and gent on this thread. You and Dani are always in my thoughts.

Visit with MO yesterday and TMs are still on the rise. MO is adding two chemos to my current Epirubicin. (CEF = cyclophosphamide, Epirubicin, Fluorouracil) Anybody had this trio as stage IV?

Oct 21, 2017 10:32AM Grannax2 wrote:

Z. I think I get it. Even at 5 months out, my liver might still be "cleaning up"" Basically, for some, if the liver gets mad it can cause a skin rash or other symptoms that don't seem related. I hope you're right. I'm due for a PET in November.

Your pics from Japan are amazing. How much longer will you be there? Praying for your treatment to work and for you to feel better. Vicki

Oct 21, 2017 02:23PM Wendy3 wrote:

morning everyone I have a quick question when your livers started to progress did any of you experience burping and flu like symptoms. I'm one month out from chemo and I fear it's starting up again😩. Been feeling weak and dizzy and burping like crazy. I was hoping for a bit more time before having to get on the chemo band wagon gain. At least some eyelashes first..

Oct 21, 2017 02:35PM Blume wrote:

Wendy I have had progression in my liver but not with those symptoms, actually no symptoms at all. Hoping it's nothing and you pick up and feel better real soon.