Where to next?

[333Stevens]

Hi everyone, I was diagnosed with ER+ MBC in the bones in 2017. Since then I have been on hormone treatment moving to Xeloda Chemo for 18 months and 3 months ago I was moved on to Kisqali (Ribociclib) and Faslodex Injections. From a test done from my original surgery in 2016 I also know that my cancer invovles PIK3 pathway. Two weeks ago I had a rather nasty Gastric Reflux episode which landed me in hospital. Whilst there the PET scan I had showed that despite the new treatment I am on my mets have progressed, new lesions have been sighted in numerous new bones and I now have a 3cm mass under my sternum. So the treatment didn't work. I am now on a break from all treatment to get my white cells and red cells in good order to qualify for a trial, as I now have the mass under my sternum I apparently now have "measureable criteria" which would allow me into a trial. My oncologist is looking into what trial would be best for me.

My questions are these which I would appreciate your input. Has anyone had a similar story to me and have you found a protocol that is working for you? I am also looking into Jane McLelland's Starve your Cancer methodology and wondered if any of you with ER+ MBC bone mets out there have tried this protocol and has it helped you. If you have any other advice would be glad to hear it.

[Hidden]

Hi 333Stevens,

I have widespread bone mets, i.e. "dozens and dozens, too many to count", for almost six years.

I know I've read posts here in the community re: Jane McLelland's protocol, mostly or entirely positive. If you use the search bar, upper right, you'll likely find some.

I can't claim to have bought anything re: her recommendations but I'll mention the things that I've sort of landed on for keeping things at bay for as long as possible. Some are backed by real studies, some are more anecdotal.

Exercise. As hard as you can manage. My sister also has MBC but hers is triple negative, yet she is NED, also almost six years in. She take no treatment (none available to her) but runs/walks for about an hour a day. I had "progression" in June, didn't change treatment, but really started to exercise and beat back my tumor markers and other indicators (e.g. Alkaline Phosphatase...indicator of bone destruction from tumors...very dramatically for a couple of months (this has reversed recently, but I'm still hopeful that it's making a difference).

Supplements like D3/K2. One of the members on this site who is a leader in the BC community shared that women with higher levels of D3 have something like a 50% greater chance of living 5 years. This one is easy....I'd suggest you just do it.

In addition to the above well-founded lifestyle changes, I'll mention the other, less well-founded, things that I've landed on. Vegan diet. I think Jane might agree? I went totally plant based after being dx metastatic really for ethical reasons but I think there is much research that shows this is helpful. Just take some B12 supplements, too.

I also do FIR heating pad "treatments" to heat up the cancer cells/weaken them. This is pretty unscientific, but it doesn't hurt, and one of my oncs says it might help. Like, why not?

333Stevens, I feel your urgency around trying to beat this back. I've felt this numerous times and it does motivate me to do whatever I can to make a difference. And I do believe that making our internal environments less friendly to the cancer can help. Like, if someone told me that jumping in circles on my left foot might help, I'd jump in circles on my left foot. And I have done this, actually!

Good/great luck with it all! I'm almost six years in, "asymptomatic", no pain, etc. I know it won't last forever, but am grateful for every wonderful day! I wish the same for you!

Take care,

Lynn

[333Stevens in reply to Hidden]

Lynn, thank you so much. I too have kept up the exercise as much as I can as I have always been a sporty/active person and I think it helps with mental wellbeing as well. I am also on a vegetarian diet and trying to avoid inflammatory foods such as tomatoes and potatoes. I am grateful for your other advice about the supplements and I can easily make those changes. I have not heard of FIR heating pad treatments can you please give me more information on this. I really appreciate your response. If the timing of communication is a bit out of whack it is because I live in Australia. Thank you again for your support and I wish you all the very best as well and hope that long may you stay asymptomatic

[klhowe]

Hi 333Stevens,

Sorry that you had progression. Good thing you went in for the Reflux.

If you have the Pik3 mutation you can go on Piqray. I am on it as my second line. There is a great Facebook group for people with the Pik3 mutation. Lots of great information.

I am glad to be on Piqray. First scan showed stable bone mets and shrinkage in the liver tumor.

Karina

[333Stevens in reply to klhowe]

Hi Karina,

Thanks so much for your response. I think Piqray is one option my oncologist is considering along with the current trials available here in Sydney. I would love to keep in touch and hear how you go with Piqray. Wishing you all the very best.

[Bubbles001]

Are you on a bisphosphonate like Zometa? It is supposed to help with disease progression in the bones. I get an infusion every three months and it seems to help.

[Hidden in reply to Bubbles001]

That is interesting regarding zometa. I have had one infusion so far. I was only told it is to strengthen the bones, wasn't told it helps with progression.