Decision time!

[Rafflesbabe]

After finding out I had progression to my liver in July and acute side effects to Everolimus after only 6 weeks, I have been advised there is further progression to my liver. So I now face the dilemma of no treatment and at best 6 months, or choice of chemo. My oncologist has given me 3 options, oral Capecitabane or two intravenous options, Epirubicin or Paclitaxel.All obviously have side effects, which depends on the individual, as well as the issue of how long it will give for any quality of life, but after nearly 6 weeks still feeling the after effects of toxicity from the Everolimus (and progression) I wondered if you could share your thoughts.

[Silver126]

Everolimus didn’t work for me and had huge liver progression. I started with oral chemo (Xeloda) more than two years ogo, then Caelyx, Abraxane and now Trodelvy. Don’t give up! I work, feel good and have an active life

[Rafflesbabe in reply to Silver126]

Thank you Silver126, I am pleased you are doing well. Positivity helps, I know, but lost mine at present. Are you also doing anything complementary?

[Silver126 in reply to Rafflesbabe]

I did something complementary but stopped. I feared there could be interaction. Moreover I couldn’t see any improvement

[Aprilfoolz1]

Rafflesbabe, I'm sorry you have had progression. Have they done any biopsies or a liquid biopsy to see if you have developed any actionable mutations ? Could you have a biopsy and start Capecitabane ? Some biopsies take a few weeks to get results . Sending you love and prayers !

[Rafflesbabe in reply to Aprilfoolz1]

Hi Aprilfoolz1,Thank you for your reply. I haven't had any biopsies, but one of my options is Capecitabane, which I am leaning towards, depending on the enzyme check.

[Pbsoup]

I was on xeloda for almost 2 years and it wasn’t that bad. I had the hand foot thing, but got used to it I am very active. I travel internationally , ride horses, work etc. none of this was too impacted. I just moisturized a lot and wore gloves to ride. My hands were ugly while I was on it, I had trouble opening lids and things, and there were times it hurt to walk. My feet are fine now but still pretty ugly. So I just don’t wear sandals or get pedicures (I’m vain so…)

The positivity thing is tough. That said I believe it is a factor in coping with side effects and for quality of life. . I decided I don’t want to look back when I get really sick and wish I had done more now while I still can. So I tend to be pretty stoic. Although I do lose it from time to time.

The other day my oncologist said to me “you’re not sick”. Huh? I thought. Then I realized he meant that other than the cancer, which is controlled for now, I am healthy. It was a great mindset shift. The writer Elizabeth Gilbert said “we all have delusions so might as well make them useful”

Finally I would ask about biopsies—liquid (blood) or tissue. Knowing mutations can play a big part in decision making. Tumors can change over time, so it’s good to stay on top of it. I had a liver biopsy and found out I am HER2 low for example so Enhertu is an option. Whether I do it next or down the road, it’s reassuring to know it’s out there. . Also knowing about mutations and other factors can help if you want to do clinical trials.

You’ve got this!

[HelenWi]

Agree with what others said about doing biopsies/genomic test to find actionable mutations. A note about Xeloda: a recent finding showed that applying diclofenac cream to hands and feet helps significantly with hand foot syndrome. Another study showed that a fixed dose of Xeloda given every other week is as effective as the traditional dose.

There are many other possibilities. Check out the latest from Dana Farber:

youtu.be/sBMbmnRdZ74?si=-Yq...(Not working as expected?)

Sending best wishes to you,

Helen

[Julesdubai]

I had awful side effects and also progression of my liver tumours on Afinitor (everolimus) I was advised to attack the tumours aggressively with paclitaxol weekly for 12 weeks. My tumours shrunk by a third and their activity stopped too. I am now on capecitibine 7 X 500mg tablets a day, 2 weeks on and 1 week off and to date minimum side effects. I have pherephral neuropathy from the infusion chemo but am seeing a neurologist for that and it's slowly getting better and also 3 months off the Afinitor the side effects have gone😊Whatever treatment you choose it must be your decision as it's your journey. I'm sending you lots of love, light, blessings and positivity 💜💜😘😘

[mariootsi in reply to Julesdubai]

What is the neurologist doing for the neuropathy?

[Julesdubai in reply to mariootsi]

She prescribed Thioctacid 600mg once in the morning before food and gabapentin 600mg at night for the pain and to aid sleep 1 month in and the side effects are lessening each day. I go back this week to get tested on my nerve response to stimulation but I already have a lot of feeling back in my feet and less pain at night 😀

[mariootsi in reply to Julesdubai]

Thank you.

[bikebabe]

hello rafflesbabe- I don’t yet have any overt progression but wish you well for your next treatment and hope the side effects are manageable. Jx

[Roarlion]

Hi Rattlesbabe,

None of the hormone targeted therapies worked for me. I have been on many chemos over the last four years. They kept the cancer isolated to my bones. Each has its own challenge. In May, my cancer progressed to my lungs and brain. In October, I got Covid with pneumonia ! ugh! No liver problems,amazing. I am now to Trodelvy. Jules Dubai put it well.. It is your decision journey ! The chemo crew on this site will help you through , if that is your decision. We are here to listen and support. After all these years, I have concluded that no one knows! Not even the experts. Our journey is helping them find out. I thank all the generations that went before us. Most of these advances would not be possible without them. I pray that my side effects are helping drug companies tweak these drugs! A little side note: I sure wish I has hair! I love my wig but when I pass a mirror without it , I look like such a cancer patient. Maybe they could solve that one! Most of the researchers are men. Stay positive. Keep the Faith!

Denise