hi friends... so looks like my time piqray is coming to an end... latest pet scan showed a few more spots on liver! I only got 4 months out of it which I guess anytime is better than nothing' o to xeloda I go..... has anyone been on this med and can anyone give me some advice or any side effects they had? Did the treatment help and was it tolerable???
not gonna like this one hit me hard being I had such a good result the first few months on Piqray. !! I'm also scared that there are more spots in my liver! Thanks so much and happy New Year
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DianaSav
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I'm so sorry about the progression...I know that's stressful...but I want to tell you that Xeloda/Cape is the *best* treatment I've been on in my nine years of wrangling MBC. Energy's great, digestion is impeccable, and...not that this matters, but my hairstylist raved...even my hair is great, full, etc!
My main one said that she had a patient on Cape (Xeloda) for 15 years...and it's not as though the treatment ultimately failed, it's just that the patient moved and my doc lost track of her.
I'm so, so happy on Cape! Did Ibrance + Letrozole, Ibrance + Fulvestrant/Faslo, Verzenio + Faslo, prior...this is the best/easiest...Now, for the potential downside...
Your feet (and hands?) might feel bad. From what I understand, this is because the meds (cytotoxic) leak out of the small capillaries. Okay. How to handle?
I have sort of fleece-lined socks that are infused with aloe...the aloe's long gone, after many launderings, but I slather on lotion (urea rich), and put these socks on. THEN, I put on another pair of socks. thick ones. And I wear Birkenstocks, not like shoes, because every ones I've tried rub *somewhere*.
Protect your feet at all costs. No running, but other forms of exercise are great. Afterwards, put your feet up like 90 degrees...against a wall or similar...to bring the blood back down.
I don't know why docs give like pussy-footing advice, "raise your legs", as if on a pillow (call it 30 degrees), when 90 degrees is more effective...Anyway...
...I'm a huge fan of Cape/Xeloda. Pushed things back way more than any prior treatment. That "cytotoxic", metabolized by the liver, is - again - the best I've seen.
Wishing you many great months...even years...on this treatment!
thank u so much for this positive and uplifting story! It makes me feel so much better! I heard about the foot thing and I'm gonna make sure I start it asap! I practice yoga so I'm hoping it won't be an issue with the foot thing! My plan is 3 in morning 3 at night for 7 days then off for 7 days! I'll do this every month!! Is that how u take it? She said it's been approved for this and suppose to have less of a side effect!
I recently read about a study that using Voltaren cream (diclofenac) really helps prevent HFS if you start right away before symptoms develop. Check this out:
Hi DianaSavI was on xeolda before I went on the Piqray and fulvestrant. Unfortunately both treatments I got progression. Only got 3 months on both.
I was just messaging another lady about the xeolda. I found it manageable on 7 tablets a day. 8 tablets was too much as I struggled with walking. So my oncologist dropped it to 7 and it made a Hugh difference.
My oncologist said she would drop it again if needed. They do start you on the highest dose at first. I did 2 weeks on 1 off.
Apart from muscle pain, I didn't have any other side effects I found it very tolerable.
I found the piqray ok apart the blood sugars so was on metformin.
I am on my 4th line of treatment now in 15 months, I have done two clinical trials which included the piqray and xeolda.
I live in Australia so we are a little behind in trials, amazing health care though.
I am on doxorubicin pegylated liposomal at the moment. I had a second biopsy and found out I am triple negative. First diagnosed at 49, de nova in 2022 er+pr+her 2 negative with pik3ca mutation. Unfortunately I have had progression every scans.
My biopsy is now being studied in Sydney, I will then be offered more treatments and trials more designed for me. It's quite amazing really, but I might have to travel again for treatment which takes it out of you.
Let us know how you go on Xeolda. They might have to Tweek the dosage so it's comfortable for you. Keep strong lovely .
I had a great run on Piqray, I progressed with skin Mets on my chest and tried Xeloda for 2 months. It didn’t work for me on the skin Mets but now I’ve been on Enjertu for 5 months with great results and my liver Mets are nearly gone, I’ve kept all my hair and virtually no side effects but minor constipation. Praise the Lord. By far an easier treatment. Prayers and positivity for you ! 🙏❤️🙏
Hello Diana I’ve not yet got observable progression. I wish you well on Xeloda and hope that all the side effects settle down quickly and become manageable so you can get back into your stride. more importantly, I hope it’s effective at keeping the reins on that damn cancer. Keep posting to let us know how you get on and good luck Jx
Hi DianaSav, I'm so sorry things have progressed for you. It's always disheartening when this happens. I tried all the CDK's and endocrine therapies and burned through them very quickly and some didn't even work from the get go, no even Fulvestrant. I'm going on month 13 of Xeloda now and doing great. My markers are in the normal range for the first time EVER! The hand and foot thing can be quite miserable and unfortunately for me, I also got the muscle/joint pain with Xeloda. Use lots of creams with Urea, glove your hands and sock your feet after putting on the lotions, and Aquaphor with gloves and socks on works great as well for healing the skin. This has not been the easiest of treatments for me so far, but it is my home run compared to all the targeted treatments and endocrine therapies. That being said, it's not really hard to tolerate either. Considering what most, if not all, the IV treatments do to us, this one is a piece of cake!! Wishing you the best on Xeloda, with long term results! Take care!!
Thank u so much! I was on Verzenio and Letrazole for 5 months she switch to Calore's and Verzenio and 5 months later progression! I was on piqray and faslodex for 5 months and progression! I have ESR1 mutation which makes my cancer not respond to hormone therapy so she thinks this will be best! Thank u so much for sharing with me!!!
Have you talked to your doctor about Elacestrant? It is supposed to work wonders for ESR1 mutations. I don't have that mutation (yet), but my cancer is a toughie because it's lobular so it does not respond well to most of the new targeted drugs.
HI! I was on Piqray for a couple of days (?) when it sent my blood sugar to almost 700. So it was on to other things, including, most recently, Xeloda. My dosage has been adjusted downward twice now and I'm at 2 weeks on, one off. The current dose is 5 little 150 pills in the AM and 5 again at suppertime. There will be no further reductions, I'm told.
On the previous slightly higher dosage and on the original one, I got really severe hand&foot syndrome--Stage 3--as in very painful large open sores on both big toes, smaller open sores on middle toes and deep cracks on heels and also on fingertips.
My quality of life was the worst of all the time I've spent on cancer drugs. Could barely walk at all (I'm a life-long walker) and no artwork at all (I'm a professional artist). I basically could hardly get out of bed in the AMs, I was so unhappy. Oh--and the chemo brain! Awful. Still having a lot of that.
So my onc put me on a couple weeks "vacation" that has been wonderful...well, aside from worrying daily that my cancer was stealthily spreading as I enjoyed less pain.
I've been back on the smaller dose for 3 days now and so far no sign of the dreaded hand&foot syndrome.
I wish a better experience for you with all my heart. I've met people who were spared the hand&foot syndrome and they've done well on it. Unfortunately, my CA 13 is nothing to write home about. And after the dramatic improvement on Enhertu, it's very disappointing.
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Two weeks on Xeloda and high liver counts but low hemoglobin, calcium and platelets. 
Changing Meds to Xeloda/capecitabine
Day 1 on Piqray
