Best Of

The big D has me frightened, at first all I saw online was constipation, constipation, constipation and I never had that problem so I figured well it can be managed. but then I saw that Diarrhea is pretty common with tirz and the Wegovy pill. I had a terrible “D” episode after antibiotics back in 2021-22 with uncontrollable diarrhea that lasted for weeks after antibiotics so….I never want to go back there. I lost 15 lbs from the diarrhea that time so I guess it was an effective weight loss method but 🤮

Herceptin/Perjeta also caused some diarrhea but it was easily controlled with Imodium and not the 'explosive' kind that I am reading about with zepbound and Wegovy. I'm starting to rethink my plan now.

Met with my onco today who said that he's comfortable with stopping my treatment and keeping me under observation. I had COPD coming into this and there's an ILD risk with all of the HER2+ targeted treatments so there's really no way for me to remain on treatment without eventually succumbing to ILD. I'm just super grateful that I reached NED before having to stop treatment due to unacceptable toxicity. Regarding remission, having multiple negative scans plus consecutive negative ctDNA's is much more definitive for NED than negative scans alone.

@brutersmom It sounds like you had rCR (radiographic complete response) without a negative ctDNA (molecular remission). NED is increasingly being based on both tests being negative.

@livinglifenow Yes, there's so much research pointing in that direction now. No need to continue indefinite maintenance therapy after NED for a specific subset of patients.

Examples of the subset that could be considered for treatment deescalation:

● Oligometastatic at presentation (5 or fewer metastatic sites)⁣⁣
● Early, deep response to first-line therapy ⁣⁣
● Achieved CR/NED⁣⁣
● Sustained ctDNA negativity⁣⁣
● No progression for years⁣⁣
⁣
I'm not there yet but hope to be.

gailmary I was told I was an exceptional responder when I became NED withwithin 4 months of stopping meds. My scans camcame back negative for disease. There was talk that maybe I would not be on meds for life. Then they did a guardant 360 and found I still had cancer cells in my blood so that plan has changed. I am still NED on scans but now we know the cancer is still lurking and I most likely will continue on meds for life.

Glenda.

@tallnterrific - What a sad story about what happened to your mother! I guess these things are the "trade-offs" for at least getting some improvements and even "cures", some of the time. Healthcare still has a long way to go, so we just have to accept and go with what's out there. It just doesn't seem fair or right, but I guess it is "better than nothing".

@dah925 have they explained why they’d give you an anti-depressant at probably a low dose off-label for hot flashes instead of Veoza(h) ? ?

I’ve finally been given Veoza and on it for +4 months. It’s working magic for me , finally a useful drug.

I have had bone mets for 5 years, but I suspect longer. I was stable untill about two months ago, but my oncologist is not sure if I have progression, so who knows what's going on. I had radiation for pain in my hip recently, and that has worked at relieving the pain but exacerbated some side effects I have from Ribociclib.

I can't believe I worked full time for 3 years when I was first stage IV.

I read a great article that I think kinda sums up what is happening; it was by the family of someone who died after many years of cancer treatment, like over two decades their family member didn't die of the cancer, but it was a contributory factor; they died of early onset of frailty, multi-system illness, polypharmacy. In other words, they died indirectly from the treatment and side effects of treatment, as treatment had prematurely aged them and their body could not cope with all the medication; the cancer was a minor contribution.

It's such a brilliant sum-up of how I see things.