lover progression

[DianaSav]

hi there... well looks like my 11 month run on. Verzenio with bone Mets only has come to a screeching halt! Pet scan showed not only more activity in old spots, but three new spots on my liver that were never there! So now I'm not bone Mets only🥹🥹🥹! My dr is gonna habe me do another Guardant biopsy and put me on Piqray for 4 weeks and see how well I do, if things are looking better I will stay on it otherwise she wants to put me right on oral chemo Xeloda! She's doesn't feel like my cancer is responding to any hormone treatments!!! Im really scared to be honest. But im gonna do whatever I have to do... any experience with this or if you too have had the same happen I'd love to hear from you...I sure could use some advice .

[viennagirl]

My heart goes out to you. It is not easy to get news like that but there are so many drugs that could potentially help you to heal that you do not need to despair. You are young and your body wants to heal so try to do other natural things like fasting and/or dietary changes along with the meds you get from your oncologist to give your body a better chance to heal. I don't know what really works but many women heal from cancer. Stay hopeful. Hugs Marlene

[DianaSav in reply to viennagirl]

thank u so much I appreciate that!

[Kerryd22]

I love your attitude! Doing whatever you have to do is the right approach. It’s different for everyone but just like we ourselves are unique so is our cancer experience.

Was an ablation of the liver spots ever part of the conversation? I’m still at bone mets stage myself but I have read other posts where the response has been a more aggressive one than just a medication change.

I did have a new node pop up on my March scan but a follow up scan three months later showed that node had shrunk by half and as Exemestane still appeared to be capable of controlling the mets it was decided I’d stay with it. Hopefully the next scan in November continues to be good as I’m going to an oral chemotherapy next time and I’d like to avoid that as long as possible.

It’s early days for you but your positive attitude will take you a long way!

All the best

Kerry

[DianaSav in reply to Kerryd22]

and no she didn't mention anything about any liver ablation or anything! I'm going to have the Guardent biopsy again tomorrow

[DianaSav]

thank you so much! I think a positive attitude is a huge part of getting thru this! I'm glad your treatment plan has worked for you! From what I'm reading the oral chemo side effects are not that bad! I'm hoping Piqray is gonna be easy but I'm ready for whatever it brings!

[Rbeth]

I was on Piqray for almost two years. Lot of diarrhea, type two diabetes, tired but it kept me going. Going on Orserdu next week. Any advice out there? Reenie

[1711JPD]

Hi. I am on Xeloda and Exemestane. Am tolerating both pretty well. I have had liver only mets. I’ve also had 2 rounds of liver ablation (first for one met and then another for two more). My most recent PET scan and CT of abdomen have shown no evidence of active disease. Everyone is different, but you may want to discuss with your onc the idea of meeting with an interventional radiologist to see if an ablation might be an option for you. Best wishes to all. ♥️

[NPmary]

I am just sorry for all you have a very been through. My only 'advice' if I have any 'right' to give it is to remember: it is OK to feel your feelings (without judging, they are not good or bad); remember to breathe and to be; remember your incredible working thru-it-all resilience - you are remarkable!

[DianaSav in reply to NPmary]

thank you so much! I just realized it says lover progression and I ment for it to say Liver lol! Anyway I'm doing a lot of yoga ( actually just finished yoga teacher training) and also am going Reiki session 🙏🏼

[Widdershins3 in reply to DianaSav]

Lover progression sounds SO much more fun, doesn't it?! Well, I have had liver mets since I was first diagnosed with Stage 4 breast cancer and they've responded decently to chemo--especially Enhertu. Unfortunately I can't take it anymore, but I'm now on Xeloda and waiting to see the results of my latest scan. And here's hoping you get such a good result that you can move right on to actual lover progression really soon

[DianaSav in reply to Widdershins3]

lol thank you so much! Good luck to you as well! It's amazing how much we go thru but yet still find time to smile 😊

[Widdershins3 in reply to DianaSav]

I figure I have a choice--I can cry or laugh--and sometimes I do both, but I do recommend laughter

[NPmary in reply to DianaSav]

That's great. I'm a reiki master, reiki energy is healing and directed to your highest good and need.

[life8888]

I had to switch to Xeloda after ibrance stopped working and I was also scared! I was on it for about a year. Probiotics to keep the mouth and other body biomes healthy helped me a lot. I drank a lot of kefir at the time. Urea creams and Epsom salt soaks helped with hand foot syndrome. Cuticle lotions can help with stunted nail growth - I used the Onsen Secret brand. I took Zofran for nausea. Best of luck!

[DianaSav in reply to life8888]

thank u so much for that info! I'm gonna be on Piqray for the next 4 weeks to see how it works and if things are not getting better she wants to go straight to oral chemo. Mind you I was 7 years clear! My initial diagnosis was 2015 I did 8 rounds of IV chemo( red devil) failed reconstruction that needed up leaving me with a flap surgery and 36 rounds of radiation)

[Widdershins3 in reply to life8888]

Sounds like you did what I did and researched the Xeloda side-effects. I was able to effectively treat the hand/foot and also the mouth sores because I already had the recommended products and used them the second that symptoms appeared.

Thank you for the mentions of Epsom salt soaks and cuticle lotion. The ends of my fingers are the most resistant locations for cracked skin and disintegrating nails, despite the wonderful 40% urea cream and diclofenac I've been using several times per day.

[life8888 in reply to Widdershins3]

They were talking about diclofenac at a UCSF breast cancer forum this week. No conclusive results but rumor has it that it's worth a try. I didn't know about it when I was on xeloda.

[Widdershins3 in reply to life8888]

It really helped my feet. But my hands/nails are not entirely under control yet. A little piece of a nail damaged in a fire years and years ago just fell off this AM. Not the whole nail, but I'll need to increase my creams.

[life8888 in reply to Widdershins3]

Yeah, my pinky toe nails are still sorta kinda missing after a bad clipping job.

[life8888]

Wow you're a trooper! I hope you see some good results on the Piqray.

[DianaSav in reply to life8888]

thank you!

[Widdershins3 in reply to life8888]

But if you're diabetic or pre-diabetic, please check your blood sugar levels frequently the first days on Piqray. My totally stable and healthy blood sugar levels soared to almost 700 the first day on Piqray. Scared the bejesus out of me and my pharmacy specialists. And no one warned me of the possible side-effect. Not good. We got it back down, but never even near previous levels. I have a feeling I'll be on these much higher doses of Metformin plus the new glipizide for good.

[Dflur]

why doesn’t she prescribe ibrance? With a hormone blocker? I have not read about any one’s cancer not responding to this treatment

[Chamisa]

Originally diagnosed in 2015, I did the whole chemo/surgery/radiation protocol. Diagnosed last summer as stage 4, with bone, lung, and liver mets.

I was on Ibrance + Fulvestrant for four months and it helped my lungs but both my liver and my bones got worse. I moved my care to MD Anderson and the doc there immediately switched me to Xeloda because, as she said, the Ibrance “clearly wasn’t working”.

I’ve been on Xeloda (actually on the generic form capecitabine) for six months now (3500 mg a day, 1500 in the morning and 2000 in the evening, dosed week on/week off to keep hand-foot syndrome tolerable) with very few side effects. My hands and feet are red and I keep them really moisturized. But my lesions/tumors are all decreased and my liver numbers are finally dipping into the normal range, as are my tumor marker numbers. The doc hopes I can stay on Xeloda for a long time— I do, too.

[DianaSav in reply to Chamisa]

Omg that is great! I sure hope so too

[Widdershins3 in reply to Chamisa]

It's great to hear what great results you're getting on Xeloda. It helps me to persevere with the many pills per day and the side-effect treatments. I couldn't swallow the big pills, so I'm on a total of 20 small pills per day.

[Chamisa in reply to Widdershins3]

That would be tough, to keep up with that many!

Plus I’m a very slow pill-taker… my husband (and my dad could too) can just pop them in his mouth and swallow— boom, they’re gone! I didn’t master pill-taking until my teens and I’m still not good at it 🙄.

[purplelikep]

I was on Verzenio for a bit when we assumed that I was still hormone positive and Her2- (couldn't get a good biopsy of the progression). But then once my liver mets grew a bit on Verzenio, we finally got a good biopsy and I was suddenly strongly Her2+! I was never Her2+ before so it was a shocker. But since then, I've been on Her2 treatment and doing super well! Hopefully your new biopsy will give some insight!