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.

mmbayne

Hi all, I had the chemo, I was diagnosed very late when it was already stage 4. I finished 6 rounds, now I'm trying to get surgery, which has taken time to find a surgeon that will even give me an exam, it's like once you're that advanced they just assume it's a waste of time to operate. But I'm 46, not ready to give up on my life, it feels like some drs think you should just go home and die. It's hard to advocate for what you want and need, but worth the battle, don't give up or be intimidated. I can say that I haven't had radiation, so I don't know all of it's side effects, chemo is very toxic, my side effects were with my feet- skin and nerves, still muscles, some hearing symptoms like ringing and clicking. That's all I can be sure you were missing out on..