ER+ HER2+ breast cancee

ldp

hello all, I was diagnosed with ER+, HER2+ breast cancer this past September. 1A, grade 2. No lymph node involvement. Lumpectomy. I qualified for a trial that my oncologist recommended. No chemo, 20 rounds of radiation, Phesco shots every 3 weeks for approx a year, and Letrozole estrogen blocker for 5 years. I’ve completed radiation, started the Letrozole and completed 6 rounds of Phesco (immunotherapy) so far. I’m lucky in that I’ve had no horrible side effects from anything. I’m a bit worried in that I did not have chemo. Anyone else out there in this situation!

DLKT

SAME! Lumpectomy in May, radiation in July, 17 sessions, started PHESGO infusions, going on number 7 next week, and no chemo. I keep reading how the infusions and chemo go hand in hand, so I’m scared I made the wrong choice here. Not sure how I qualified for NOT having chemo? Would love to hear from someone that started this case study in 2020 when they opened it, and see how they are faring now, 5 years later? Anyone out there that has been there, done that? And did you make the whole 17-18 infusions? I’ve thought of stopping the immunotherapy, as I’ve had a set back with serum creatinine levels, and that worries me ALOT.

canarycat

hello we all are the same but different! Stage 1b no lymph involvement. I had 19 radiation (15 whole breast and 4 targeted) no chemo as oncotype was low. I'm on anastrozole - had to switch off letrozole as I couldn't tolerate it yet others have no issues. I was not offered any study. Interested in hearing how you are doing on the study meds.

DLKT

you can read about the case study if you google Dana-Farber PHESGO, I think it will come up. So far, I’ve had a few side effects from the infusion, only they won’t admit it’s from the infusion although I believe it is.

Sadly the diarrhea is the most common, I can deal with that, the Immodium works fine. My serum creatinine has been elevated? One minute they suggested I see a renal specialist, and when I mentioned stopping the infusions as I was not going to risk my kidneys, they then said the numbers weren’t concerning? So it’s been a bit confusing, and depressing. Now it’s terrible leg cramps at night? It is listed as a possible side effect of the infusion, but they are saying it maybe the letrozole? Maybe dehydration, although I can’t possibly drink anymore water, coconut water, and Gatorade than I already am. Will have lab work done on 11/5 and if the numbers have not come down, I will have to decide if I wish to continue the PHESGO? I can only hope and pray, the surgery, radiation, 7 infusions and the letrozole can save my life.
It’s just such a confusing time. Then they throw in the diet changes, and I just can’t think straight. Ready to swallow ivermectin and Fenbendazole and take my chances.
prayers are the only thing keeping me moving ahead.
I don’t wish a diagnosis of cancer, of any kind, on anyone. Best of luck to you.

dssdesi

Oh,DLKT. I am so understanding of all your feelings. Gosh it can be so hard sometimes. Hang tough and I will to. Prayers for all.