Best Of
Re: Phesgo - Clinical trial
Hi Ladies,
I am so grateful to have found this group! I too am in the ADEPT trial. I was diagnosed with Stage 1a triple positive breast cancer on 8/13/2025. I had a lumpectomy on 9/22:2025. I received my first injection on 11/3/2025. I will start radiation on Monday, 12/1, and the hormone therapy will begin after radiation.
So far my only side effect has been loose stool/diarrhea. I started eating oatmeal, brown rice, and applesauce to firm the water in my gut. I also started drinking coconut water. All of this has helped tremendously. I take Imodium if I need it.
This journey hasn’t been so bad so far, but it is still quite stressful. My faith has carried me.
Any side effects with PHESGO/radiation combined?
Re: My Husband, My Life, My Love, My Family, My Cancer
@eleanora - Thank you so very much. Seems like I've had a lot of problems with electrolyte imbalances and now a "possible" uti (test was negative, but I have some vague symptoms). No one has really been able to put their finger on this. I've been talking to my oncologist, been to the ER, been to urgent care, and also am working with my PCP, but no real definitive answers at this point. I'm seeing the oncologist again this coming Tuesday. Just lots of low energy, brain fog, aches and pains all over. Getting some of the electrolyte imbalances corrected seems to be helping some, but now I'm taking an antibiotic (macrobid/nitrofur….sp?) for a possible uti and that too seems to be making me feel a little bit better after a day or two, but it also seems to have mounting side effects that aren't pleasant. I don't know this particular antibiotic but seem to remember it being given to me many, many years ago, and I stopped taking it midway, due to side effects. We shall see. I didn't have a chance to discuss this with the PCP, as he just phoned it in to the pharmacy and I got a message later. Since I hadn't had it in so long, I decided to give it another run. Fingers crossed that this will do the job! I'm also getting a break now from the Zometa infusions, and I recently read that those can cause electrolyte imbalances and uti's as side effects, so gotta wonder … Hope things have been going reasonably well for everyone here and that this week-end is a pleasant respite for all. I miss my routine activity here.
Re: how about drinking?
Well, it's good to read that a little drinking might not kill me…after my diagnosis…had the surgeon, oncologist, and several other doctors tell me no drinking as it makes your body produce estrogen…I had surgery a year ago and 10 radiation treatments…tried 3 estrogen blockers…which made me very sick…not taking anything now…am drinking 2 glasses of wine a day and I feel good…I am tired and want to keep my blinders on and trust God…
pegkel
Re: Who's starting Radiation in November 2025? Let's gather here to share!
Hi
Ok, this is a venting rant for me. I began the first of 9 rounds on Fri Nov 21. When I went in on Mon to continue, I could not hold my breath to reach my baseline. So, no treatment on Mon. I met with the RO on Tuesday, and she said we will replan you using your current measurements to continue without holding your breath. So I said “great”!! They were so kind, even giving me a parking pass and some gift cards to the coffee shop.
So, back home I came, again without treatment.
So great!! Wed, I’m all set to restart with free breath. My goodness!! Once again, they could not do it. She said my alignment changed as my sternum was more aligned!! The only thing that changed was that I had gone for a massage (which I asked about and was told by my team that I could go)
RO said a massage normally doesn’t change anything but when she massaged my collar bone.. it somehow changed my alignment.
I came home and cried my eyes out to a friend on the phone. And drank wine. I just was so upset that I keep going to the hospital and nothing gets accomplished
I’m not one day closer to being done
So, I had to go in again on Thursday for another CT Sim, and this time I did it take as deep a breath to create my baseline.
But I still have the option to do treatment either way. That the planning has been done for holding breath or free breathing
Hoping now to restart the week of Dec 1, as I was told they rush the process when it’s a second CT Sim
My mind hurts and I just need a mental break from being so positive
Re: Bone Mets Thread
Thank you for your response,
And indeed, all I can do now is wait for the biopsy results to know what type of cancer this new lesion is and what treatment options are available.
The doctor is also suggesting a gene mutation test and will offer treatment options if I have that mutation.
I’m hoping he can put me on other treatments in pill form instead of Enhertu, which is given intravenously.
Re: Bone Mets Thread
Hi
Wishing everyone a Happy Thanksgiving, and I hope you all enjoy a peaceful and restful holiday.
This is a brief update on my situation since my last post.
I started CDK4/6 inhibitor treatment in August 2024 and completed 15 cycles. My CA 15-3 markers kept rising for months, only dropping for a short period before increasing again to 227 by October. Despite this, several PET/CT scans continued to show good response in the previously affected bone areas (tibia and L4).
Because of the mismatch between the rising markers and the scans, I had multiple MRIs (lumbar, thoracic, abdomen, chest, and pelvis) between May and October. None of them showed clear new lesions.
In October, I also had pneumonia and paused Kisqali, but the chest CT was normal.
Recently, I repeated a PET/CT instead of doing more MRIs. This scan showed three active lymph nodes (supraclavicular and mediastinal) and renewed activity in the tibia (SUV ~4).
My doctor now wants to perform a biopsy from either the tibia or one of the lymph nodes to check for mutations. If no mutation is found, he is considering switching me to Enhertu as a second-line treatment.
My question is: Why should Enhertu be the next step? I thought Enhertu is usually used in later lines, and if it fails, the next option may be chemotherapy.
Has anyone experienced something similar? I would appreciate your input, as this uncertainty has been very difficult since May.
Thank you
Re: Life does not end with a stage IV diagnosis (really!)
Thank you so much🫶 Let the journey begin!
xsuzx
Re: Can we have a forum for "older" people with bc?
We are booking PR for next week. To save $500 or more we’ll be flying out of Fort Lauderdale - an hour and a half from home.
In addition to $ savings, Fort Myers has no direct flights either, we’d need to fly way north and add 4-8 hours on to a short trip.
Hotels charging up to 22% for resort fees, some hotels are next to the airport to boot, or landlocked near the major highway.
SO trying to work deals on points etc… I’m done, just book something on the beach.
Martyccrn, sorry you had to join the group. We chatter on just about everything under the sun. Ask away and one of us may know the answers. Some of these ladies were nurses too.
Reader, the desserts looked great.
Betrayal, the luminaries sound great. Post a picture once they’re up if you can.
Chris, it sounds very cold where you are! Keep warm.
Bloodwork was easy, the tech was very good. I ate my Cliff bar and sipped my seltzer as I left. No results yet. It was 53 and felt 43 this morning as I left.
I’m heading back outside to get some sun and read my book. Enjoy your day ladies!
cindyny
Re: Bone Mets Thread
Hi everyone I have an update and some concerns that I would like input. The good news is that I am continuing now to be stable. Many lesions according to my last scan which was done in June 2025. Prior to that I was getting scan every 3 to 4 months plus MRIs when things popped up. My tumor markers are now in the normal range and thus far have been accurate. My oncologist is not doing any scans she said now until I have symptoms or my tumor markers rise. I am upset about this. She said that data is showing that it is not good to get to many PET scans . I literally begged her for one. She said no and then said if needed she would not hesitate. Unlike some other patients or even perhaps some of you here I would not mind getting scanned everyday. LOL. Is this normal when one is stable not to get scanned as much. I don't want anything to be missed. Remember they found my METs by accident. I went to ER for something else and CT scanned showed it. She has not in the past hesitated to order something but I want to stay ahead of everything. She just says tumor markers are good,blood work is good,and unless I have a new symptom she will not order one,or if my tumor markers start to rise. Please for those of you who are stable how many times do you get scanned. Is this new?
jen1
Re: My Husband, My Life, My Love, My Family, My Cancer
Wishing everyone a belated Happy Thanksgiving! I've been MIA for awhile now, as have been having a lot of ups and downs and still don't know exactly what's going on. I'm not caught up with everyone at all, but hope to scroll and read a lot over the weekend. Just wish everyone a wonderful holiday weekend.