TNBC MBC Stage 4
Comments
-
Hello @cookie54 and @rlschaller.
We've finally gotten out of the heat wave here, at least until the next one! What a relief. Lying low, indeed.
Is it any cooler out on the water Andrea? It looks lovely, as do your summer plans. I'm not actually in the Carolinas; "sc" is the name of my old home town, nowhere near here, though I realized after picking my screen name that it did look like "South Carolina". A bit confusing!
I did get my dental surgery done on the 25th. Next thing is to get re-biopsied on the slim chance that my markers have changed, in a bid to open up other treatment possibilities. Has anyone else had that done? Otherwise it's on to what is likely my last-ditch chemo possibility of carboplatin + gemcitabine. My skin mets have been going rather crazy: lots of spots, so no more eribulin. Even though a recent CT was relatively good, my skin says otherwise.
A recently found genetic mutation meant I might be able to get immunotherapy, but now my MO says that wouldn't be possible as I already had pembro, and the various immunotherapies are pretty similar. Disappointing.
Rhonda, good thing that your skin is better. When will you find out what's going on with the hot spots? Yay for improved fatigue. It is certainly my nemesis. Your "rolling with the changes" (punches?) is about the size of it.
Take care all.
0 -
Hey @scgal08 Well you fooled me lol, I for sure had it in my head you lived there. Well I'm certainly sorry to hear the skin mets have been going crazy, it down right stinks! I think it's a good idea to re-biopsy on the chance that your markers have changed. I have not done that yet but I have read others on the forum that have. I did have Gem/Carbo when I was Stage 3 and I'm glad to hear it's a possibility for you. I will continue to pray and remain hopeful that this biopsy reveals additional treatment possibilities. BIg hugs and strength your way💕
Yes there is a little relief if there is a breeze on the water but not in the extreme heat that we had!
0 -
@cookie54 - Thanks for sharing this opportunity and for sharing your own interview experience with the community.
For anyone interested, you may also consider posting this in our
Thanks again for thinking of the community and sharing this resource.
The Mods
0 -
hi @scgal08 Rita,I recently had a biopsy and a guardiant blood test to look for changes, always helpful. Last time they found I could take Keytruda. I know they told you couldn’t repeat it, my MO at MSK said it did not matter cause it was when I was originally diagnosed it was a long time ago, my first diagnosis, and before the tumor had mutated into skin Mets . You know every MO has their own way there is so much wiggle room in the standards of care, they can paint outside the lines lol..I read once that MOs differ all the time, you could get 35 different answers to what should we do next ! I hope something shows that you can work with. I never did the Carbo/gem combo… hope it works for you . Our bodies are all so different, and we have no control. But we have this moment , small joys, and eachother. I love that. Rolling along.. riding the waves lol..so many good metaphors to choose from lol….
And this is just a suggestion, ignore me if it doesn’t fit for you. I’m haveing great success with the imiquimod 5% cream MSK prescribed. They are actually dissolving. Mine have gone crazy a few times, and this is so much better than radiation. You might mention it to your MO, and perhaps they could refer you to a cancer dermatologist? Or MSK does telehealth. Here is my providers info, just incase it is worth exploring. Cara Chin MSK dermatology 646-608-4329. And if you ever want a second opinion my MSK MO is Pedram Razavi, 646-888-4821. ❤️❤️❤️❤️
@cookie54 Andrea isn’t it great to have a week of cooler weather ! I’ve actually been able to go for short walks again without melting. I know the temps go back up to the 90s, but this is ssoooooo nice.
Quick update my MSK MO told my Northwell MO they were over reacting to the PET, he had his folks do a report form the disk and feel it’s nothing to worry about, the signatera tests so far do not show systemic growth, so we stay the course with the CMF + K and imiquimod for Mets. Riding the waves…..Hugs and love to all- Rhond
1 -
@rlschaller Good news on the PET….keep on riding!
0 -
@cookie54 As long as capecitabine keeps working for you, maybe a re-biopsy isn't needed? You've gotten a lot of mileage out of capecitabine and we hope that it continues for a long time. Enjoy your time on the water!
@rlschaller That's great news Rhonda that you will keep on with your chemo combo plus the topical treatment.
Thank you for the info re your providers. It is on my list for my next MO appointment (not yet scheduled) to ask her about the imiquimod. Good that it continues to work for you.
You certainly have some appropriate metaphors. Riding the waves is certainly the case isn't it; sometimes it gets rather choppy, like recently!
But keep on keeping on.
Take care all.
2
