TNBC MBC Stage 4
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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.
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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!
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@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
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The Mods
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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
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@rlschaller Good news on the PET….keep on riding!
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@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.
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@cookie54. @scgal08 and all reading along ❤️
morning gals, still riding the waves of change. My CDNA (from signatera test ) was high went from 6 to 23 to 100 which indicates cancer growth… somewhere. They are not sure about where the progression is exactly could be from the Mets or the spine. A tiny dot on MRI in soft tissue next to the cervical spine is new. Everything is tiny, but it’s there. So I’m changing meds after all. Eribulin is next, start on Tuesday with Keytruda. And continuing to use topical cream for Mets. Choppy waters indeed. Lol life is what it is, small joys continue. Have decided life is too short not to have an occasional glass of wine and chips! Go back to MSK on Sept 4 for follow up, see how the CDNA is doing then. I’ll keep you posted. ❤️💐
Rita hope your Mets are being contained , did you go on eribulin or gemcitabine? How are you enjoying your summer? Andrea hope you are boating and swimming and enjoying the summer on the water. I’m reading and relaxing, so nice before the semester starts in 3 weeks. Have to do a virtual new parents orientation tomorrow, but today is a lazy day. Books and walks, and maybe order in. Happy Saturday all.0 -
@rlschaller Ugh Rhonda i’m sorry to hear that your numbers are rising. I guess to find something positive in all of this since they don’t see anything widespread it’s the one spot that was seen on the MRI. So I’m hoping with the regimen change that they nip this quickly and get you back to a stable point.You always have such an good attitude that I truly admire.. We’re always here listening and rooting you on.. Sending positive vibes to you as you start your treatment change. May it all go smoothly with minimal and tolerable side effects. Hugs❌⭕️
@scgal08 Rita , hope things are going well with you❤️1 -
@rlschaller and @cookie54
Hi to all.
Rhonda, such choppy waters! Hope that they are able to clarify where the progression is. Good that the topical treatment is still working on your skin mets.
How is your fatigue?
Please do let us know how you are doing with the new treatment and your follow-up.
Andrea, wishing you continued smooth sailing!
I'm still waiting to start what will likely be the carboplatin/gemcitabine combo. Next MO appointment is next week. My skin mets have gone a little crazy, now being on my scalp. Time to get on the next treatment, as I've been off chemo since June 9 what with dental surgery and one thing and another. The wheels turn slowly here sometimes.May we keep on keeping on.
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@scgal08 @cookie54 and all who read along - evening gals !
oh Rita - these Mets are so annoying! And I know, we go off treatment in between the changes and these little devils just start popping ! Lol oy vey. Sorry ❤️, and the scalp too! I’ve been there a few times with arms, chest and back. Fingers crossed you get to start next week and they calm down. Funny new relationship you form with the body, isn’t it? This is where I love the Buddhist teachings that we are not he body, we simply have a body. So helpful.
I start eribulin next week. My Mets are popping up too a bit, but the imiquimod is holding them steady. Lol as soon as some dissolve others pop up, never ending whack a mole. But, if your team is willing to try the cream, I do recommend it.
Thanks Andrea for your prayers and support for us. Hugs and love to all ❤️ Rhonda1 -
@scgal08@rlschaller Thinking of you both, hoping things are going well with treatment.Sending strength and hugs to you both ❤️All ok here.
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@cookie54 @scgal08 got great news today. Merk pharmaceuticals is going to provide a years worth of Keytruda treatments for free. My MOs put together an untraditional treatment plan of Eribulin + Keytruda and my insurance would only approve/pay for Eribulin . So we applied for Meeks patient advocate program for compassionate use to directly to Merk, and they called me to say they approved it. I’m so happy. My MSK MO feels the Keytruda adds to the longevity of the treatments, so yeah team. Had my second Eribulin treatment today, and all is good. Start teaching next week (where did the summer go) and probably start 3 treatments of radiation for the cervical spine dots… the never ending whack a mole of my journey. Lol.. thank god I feel good all the time , I just take it all in stride. Life is always presenting opportunities for learning .
Hugs to all. Prayers and good wishes all around ❤️
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@rlschaller Yipeeee!!! Great news, I pray this combo is a successful cocktail that keeps the pesky mets away forever! Keytruda is a fabulous treatment and has been paired up successfully with several treatments with good outcomes. Merk is great, I was on a similar program for 2 years also that I didn't pay the balance on the cost of Keytruda.. Beyond happy for you, continued prayers. Glad to hear you sound upbeat about heading back in to school which I know is your passion. May you continue to feel well and have good energy to continue on with working. You are a positive force for all🙌
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Yay @rlschaller for the good news re Keytruda! It works especially well when paired with a chemo drug. Here's hoping that the combo works for you for a long time. All the best as class resumes.
Hi and good wishes to @cookie54
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