He feels that it is not urgent to change medication, Instead I am to up the Xeoloda dose for the next 6 weeks while I am traveling, then we watch markers and possibly scan in 3 months. My markers tend to correlate to my situation. He doesn't think I will be on Xeloda for the long term, but this buys time to make decisions.
In meantime, when I get back from India I will see the hot Interventional Radiologist who wrote my age on his report as 10 years younger than I am after we first met (by zoom, with good lighting...) for a biopsy and a discussion about possibly zap options, Although my MO wants to wait a bit longer to see if the systemic therapy helps before we zap. So I guess I get a chunk out of my liver for Christmas. Wasn't top of my list, but hey.
He does not want me on IV chemo yet. (A relief as I finally found a good hairdresser and an amazing conditioning treatment that makes my hair look almost normal for the first time in 3 years--I am very, very vain. Plus no one knows I have cancer... prolonging the inevitable is on my bucket list)
He did say that there is new data that Trodlevy can work for some ER+ cancers, and this was just released. So we might try that. Have any of you heard of this? News to me and I have been down one hell of a rabbit hole of research.
Or Enhertu as I am HER2-Low. According to my Facebook and Google research, that seems to REALLY work when it does. There is a woman on the FB Enhertu board 4 years in to the treatment jumping off cliffs for fun. She gives Enhertu all the credit. I am pretty robust still, so hopefully the side effects won't be too grim.
He also agreed meeting with Stanford or UCLA for a 2nd opinion and ideas about possible trials is a good idea. He said I was lucky to have cancer when I do, with all the new treatments coming out. He said it's an exciting time. Nice to hear.
Although not sure lucky and cancer go in the same sentence. Doesn't have the same ring as "lucky and lottery win"
So we have a plan.
Of course, I am a horse person, constantly dealing with 1000 pound animals off for weeks with a stubbed toe, so know that plans don't necessarily go to plan.
But there are options.
Or the illusion of options. I am all about sublimation and illusion.
xoP
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Excellent news and very encouraging words from your Doctor. I was in India in 2019. Enjoy. Beautiful things to see and wonderful people to meet. One of my most memorable trips.
Sounds like a good plan ! Enjoy your trip. When you are back, I would ask about a biopsy if possible of new areas of cancer growth . I understand your position of not sharing MBC news with people - very few people in my world know (only those very close and no one at work ). Horsewomen are some of the toughest / best physical condition I know so that says a lot about you
ok thank you for the update and the quirky fun way you write about all this pain in the ass stuff we deal with. I am uplifted by all the hopefully things coming out and left to try.
I didn’t know you were off to India! Jealous! When do you go and for how long? I assume your partner is going with you. … hard travel if you were by yourself. Are you worried a bit about how hard Xloda will be when you push the dose? How was the hand foot for you? Anything else unpleasant about it? I’m bracing myself to be put on it next and happy to see you are travelling with it… I hope to go back to Nz in January for summer weather over there.
Sorry about the stubb toe that is keeping you from your riding. A sore toe can be so painful.
That's funny. Not my toe! My point was horse are always doing something stupid to hurt themselves requiring tedious rehab and layups. How did they survive in the wild!
I'm going on my own to Istanbul en route for 2 days--although coincidentally a friend is there for my first night, then am working in Mumbai. I have been on Xeloda for a year so am used to the hand/foot thing. I did raise the dose a couple of days ago and am already noticing my feet feel more uncomfortable. But am not worried per the travel. I'm not doing mountain trekking!
Per Xeloda, everyone is different but I really don't find it so bad. The hand foot thing is a bore--but with lots of creme it's bearable. It was especially bad the first few cycles, then became more annoying than debilitating. My hands are dry and kinda ugly so it's embarrassing to shake hands now that people do that again post COVID. I do get a bit of vague nausea and had some bone pain. Worried it was progression but scan showed the pain was no where near where mets were. So all in all, it is not bad and I definitely think it has to be easier than IV chemo. So I wouldn't worry too much...
hi PBsoup- excited for you to be doing such exotic travel… and in your own. So fun that your pal will be in Insta bill for one night. That happened to us for long layover in Singapore when we realised friends would be there. So fun!
Thanks for trying to reassure me with your Xeoloda experience. Just glad it isn’t IV chemo yet.
I am so glad you got your answers and response! You are a brave one, sharing time with horses. I re-homed my four horses when I got my metz diagnosis, for fear of breaking a bone. I hope you have a lovely trip, with smooth sailing and it sounds like you have some good options with your treatment. Take care!
Per the horses, I am a nervous rider, so am not jumping big or galloping fast. My Onc.said the bone shot--Xgeva, makes my bones as resilient as a normal person's, so is fine with ne riding, I do eventing, but very low levels on a very trained horse.
If I didn't have a horse I would go mad. My biggest middle of the night fear is my health will deteriorate to the point I can no longer ride. I favor very steady Eddie types, and have an amazing instructor and barn family. It's risky, yes, but a risk I'm happy taking. Sky diving?Not so much.
It makes me happy to hear how much you love and enjoy riding! My best friend has a mare born from one of my studs and I’ve gotten to see her grow up and show, and it brings me so much joy! I’m missing my four boys just thinking of the barn, time we had and my barn family.
Using Xgevia brought my bones back to normal. No more osteopenia. I know I have not been in the normal range for over 20+ years. My mom had osteoporosis.
My first oncologist said it was a good time to have cancer too because of all of the new treatments coming out. We are lucky in that respect, but yes, I’d rather win the lottery!
Great on hearing from the doctor and a plan. I hear the exciting times line too...and eye roll. Here too few know and my hairdresser is a goddess. Horse question. I have not ridden more than once or twice before, but think I would enjoy it. Thank you, Yellowstone. The issue is...I have foot drop. With some accommodations, could I ride?
good to hear you have a plan, that always help give peace of mind. I think you are Lobular right? So I hear xeloda works well for that. Enjoy your trip. Keep us posted. Your oncologist sounds good and in tune with everything.
TRODELVY: I, too, had not heard of it so I had to look it up on My Friend Google. The usage says it is for triple negative. I don't have that but I am HR+. What is your diagnosis?
So glad you were finally able to connect with your doctor and received some answers and a path to go on. I hope you have a wonderful, safe trip. Just try to enjoy everything you are able to do. Sending you hugs and prayers!
Pb....always good to have a plan. such a relief. and not just a plan but a good one. upping the dose sounds solid in buying time. I realize you will be working, but also some fun time planned as well. good for you.
as an aside....I had a terrible experience as an inexperienced teenager. went horseback riding with friends and I got the 'rebel'. a rebel myself so we were a match...ha! he took off on his own path and I had absolutely no control (I admit I had no clue what I was doing and pretty sure he knew it too..lol.) so we ended up alone at a watering hole. and he kept twisting his neck to try to bite my foot. my first and last time on a horse😉. hmmm...perhaps I needed lessons first.😂. however, I do admire women who ride🐎. probably more so because of. he scared the shit out of me. still makes me laugh...
as for vanity....that's a tough one. I too am very vain. over the past year, my spinal deformity has progressed, a lot, and I am now a very deformed cripple. my spine is severely bent, hunched, and twisted. I look like a freak. and to make it worse, no clothes fit. but I am still vain. this is my toughest challenge thus far. my identity is in crisis. I am feeling very down.
I have lots of empathy. Society tells us vanity is wrong, but our bodies and appearance is absolutely linked to our sense of self. I think it’s unfair to say to cancer patients “oh it’s just hair” or “looks don’t matter”.
Hi ladies I just wanted to comment you both on the last 2 posts - that people whom have never had cancer had said that to me, that it is just hair. These are the people that just do not get it. Kokopelli - I feel for you and the issue with your spine. Mine too is a bit off and I am hoping it does not get worse. I have been on cap (xeloda) since May. Sept CT and gamma bone scan show stable - but the tm's rose 100pts in a month. Doc said to keep on the cap and actually raised it 100 more mg. Pet scan is planned, so we will see. I am in spain and he stated that enhertu has just been approved here for trials. Gave me 2 other options too, but do not remember what they are. He is going to the san antonio cancer conf. in Texas, I think the 5-9 of Dec and my appt is on the 12th. Sure would be nice to have positive news for Christmas. Blessings to all of us -
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One year down - PET scan results
