‘Probable’ Bone Mets

RN - sorry to hear. I'll be holding you in the light.

WonderNurse-

What a shocker after those two other early stage bouts. No use feeling bad about the Tamoxifen now, what's done is done.

Will you also be receiving the other two drugs - the zoladex to shut down the ovaries and the bone strengtheners? The first makes the other I/L combo work and the second both strengthens the bone and helps keep the bone mets away too. The first two months of Ibrance you will have to do an extra blood draw per month but once you get set on a dosage its pretty much a breeze. My primary is almost gone at this point and Im only on cycle 4.

If you only have two spots (pending scans) you may qualify as oligometatastic (ugh, cant spell, its been a long day). There is a thread for those ladies in the Stage IV forum as there is some evidence of treating a light mets load for cure can have really good (and long lasting) NED results.

Come join us when you have gotten over the shock and are ready - it will get better once you get started and have some time to process. Most of the time I forget I even have cancer, which is a little scary in a way.

wonder nurse,

I'm sorry that like far too many, you've discovered that bc can and does come back for far toomany. I have been NED for 8 1/2 years on an AI only. Ibrance was still in trials when I was dx'ed. You never know where this may go with any certainty but I feel like there is reason for hope. My good luck allows me to look back and see the advances that have been made over these 8 1/2 years. Yes, we want a cure but things look better now than then. Take care.

RN —- so so sorry you’re going through this.. I’m Stage iv bone mets. It was a total shocker for me. All great after initial Dx in 2016, until I broke myself one morning putting on my pants. Five weeks later (yes horrific pain but long story why I didn’t go to doc sooner) learned is fractured my L acetabulum and had bone met about the size of an index card. Fracture healed beautifully without surgery and nov/dec Radiation successful. PET scan three months (On Fri 13th) to check on acetabulum healing revealed L 2-3-4 mets. Halfway through radiation for those now. Will begin Herceptin infusions tomorrow. Sending you a virtual hug. Those of us going through diagnosis andtreatments now have the added emotional strain of isolation because Cvirus requires us to be alone.

Hello! I was diagnosed with Mets to Bone in August 2019. My original diagnosis was April 2015, diagnosed ER/PR+ HER2-, did neoadjuvant ACT Chemo, had Bilateral Mastectomy, found out after tumor was biopsied ER/PR/HER2+, had to do 1 year of Herceptin/Perjeta, 28 radiation treatments. Was fine up until around March 2019. Had pain in hip but attributed to rough gym workouts, it continued for a few weeks. Went to oncologist for every 3 month check up in April and alkaline phosphatase level was high. Waited one month for new blood work, level still high in May. Had CT, Bone Scan, PET, and Bone Biopsy for Confirmation. Did 29 sessions of Radiation to HIp/Pelvic Bone, loading dose of Herceptin/Perjeta in August. Went to Florida in early September and ended up in ER day after arriving and stayed for 6 days. Diagnosed with a parasite-e Histolitica. Took me 6 weeks to recover at home and decided was not going to survive full dose chemo. Researched alternative /integrative treatments and ended up Reno Nevada in late October at Forsythe Cancer Care Center. For 3 weeks, I did IPT Chemo (Low dose chemo with insulin) and High Dose Vitamin C, Hydrogen Peroxide, Glutathione, PolyMVA and Immune Protocol IV's. I came home mid November and was on a 3month post treatment protocol with 30 supplements a day and oral chemo 7 days on 7 days off for 3 months. My cancer markers went down dramatically through end of February when my 3 months ended and slowly have increased again. I had another Genetic Cancer Test Done (RGCC) again in April 2020 (my last one was October 2019) and the results are completely different. My husband feels that the loading dose of Herceptin/Perjeta in August 2019 skewed my 1st Genomic Test Results I had done in October 2019. Fast forward, Oncologist wants me to do Herceptin/Perjeta again. Loading dose to start then single doses thereafter. I am so concerned that my diarreha will be uncontrollable again that it's freaking me out and I don't want to relive my month with the parasite. Has anyone had positive results with just Herceptin alone? I know the results are better with using both H/P, but I'm afraid and on the flip side my PET from a few weeks ago showed several new locations, left pelvic bone, neck and jaw. I am also starting a new supplement protocol that is designed to attack cancer stem cells (approach used by Jane McClelland-How to Starve Cancer). My thoughts are to do just Herceptin alone for 2 treatments with the new supplements, check cancer markers to see if they have decreased, if not, fly back to Reno for IPT chemo. My oncologist does not agree with alternative/integrative approach but I do not feel that Full Dose Chemo is a One Size FIts All Approach and will not do it. I would love to hear your thoughts with Herceptin alone and/or Herceptin and Perjeta - what your side effects were having it a 2nd time around. Thanks for listening!!!