Feeling lonely with Faslodex/Fulvestrant

First, I follow the ASCO forum (virtual for 2020 because Covid-19) and I have read the Sanofi presentation about cancer drugs in the pipeline : this company is developing a new drug as an alternative for Faslodex, not injected but by pills. The code name is SERD 859. The slides of this presentation are on the Sanofi website. This drug is on a fast track.

Buttonsmachine, I think we are on a similar road but maybe for different reason. I tell my story if it can help. Regarding my case, I have a pretty clear idea of the reasons of what happened to me with this recurrences in skin : a sequence of medical errors + bad luck.

- first, I had not only DCIS in my 1rst cancer but also partly mucinous. If mucinous is known to be an "easy" BC, the combo DCIS+mucinous is known to spread locally because of the mucus.

- my first biopsy could have shown the mucinous but bad luck, it didn't. The surgeon used a new technic for my operation to get a nice nipple sparing mastectomy with immediate reconstruction : curettage from the armpit. In my case, this decision was simply a disaster because it spread the cancer cells under my skin ! Plus esthetic disaster : my left nipple was 5 cm above the right one and no more fold.

- My body reacted very badly to the silicon prosthesics : implant disease (pain, fatigue, spasms, lymph everywhere, etc). A big node in the mammary chain. Biopsy OK.

- In went to a new surgeon, and I decided to choose a total fat grafting reconstruction. I did all the mammogram, etc. The radiologist didn't see the cancer recurrence. So every surgery of fat grafting spread the cancer cells. When the surgeon remove the implant, there was a huge capsula, the biggest he ever saw in his life, he told me.

- At the 4th surgery, my surgeon wanted to build a very nice fold. For that, he cut a piece of skin and... discover the cancer under my skin.

- MRI, scanner, ultrasounds : all same results, 7 tumors in my new and beautiful breast... Petscan : no mets.

- Oncologists were completely lost with my case : how to cure breast tumors in fat, that was the question. Plus very low Ki67 : 7 to 10% in the different tumors... They made me wait two months and a half before to decide what to do. WTF !!!

- I decided to browse Pubmed and to treat myself as I could (I worked for pharmaceutical industry + a medical reasearch center for 15 years). It was impossible for me to wait to die expecting that the neurons of the oncology team figured out what to do. I went to my GP who accepted to prescribe me a full dose of Tamoxifen (I was on half dose because of implant disease). By my readings, I discovered that keto diet was an option during chemo for a some cancers including BC.

- I began the keto diet and lost 10 kilos before chemo (in two months).

- Just before chemo they decided to put me a clip in the most difficult tumor in my chest (the lowest Ki but supposed to be the biggest and very thin) and used ultrasounds. And you know what ? The 2 smallest tumors couldn't be find anymore !!! I knew I got something with the keto diet !

- 6 months of chemo. Against all odds, the chemo worked outstandingly. 100% tumor response. During the chemo, the MO tried to convince me to give up the keto diet. I refused.

- 2nd mastectomy on the same breast.

- Radiotherapy : my skin remain normal until the last week (I used CBD oil according to a mouse study that it enhance the survival). And when it became red, I discovered that... the RO forgot a zone where I had cancer !!!

- Two months later : recurrence in the forgotten zone (just above the heart). Impossible to get a new radiotherapy, they said. They wanted to give me the combo Faslodex + Ibrance. I refused Ibrance and went to a new hospital. New surgery (may 2019). The recurrence is very bizarre (impossible to decide if it was still ER+ or not and the cancer cells were "very rare" in a fat cyst). I continued the keto diet and Faslodex ("it could work" say the the MO). The plan was a new chemo if a new recurrence.

- I heard about the COC protocol in june 2019. I begun it in july.

- Since I never had a recurrence and I am know eligible for breast reconstruction (DIEP).

Here is my story. I hope it can help.

GraceB I hope your petscan will come back as clean as mine. Fingers crossed !

Welcome to this thread Barewlaws. I have muscle and joint pain too. I manage it for the moment with Vitamine K2 and Magnesium which is quite effective.