Can I avoid chemo second time around?

Pixiepixie

After my mets were discovered to liver and bone (bone not so bad) my onc immediately started me on Xeloda. I was definitely not going to do the aggressive chemo's given I only just finished them last year for my primary diagnosis (FEC and taxol). However when she explained these were oral chemo and less toxic I hesitantly tried. I have had so many horrible side effects on this drug. The most embarrassing being blotches appearing all over my face and my chin looks like it's been burnt off. Im sick almost daily and can't maintain a healthy diet as I eat whatever I can stomach. The fatigue has also blown me away. I'm so depressed (I was coping well with the news until the chemo started) and hiding away indoors. It's the exact opposite of how I wanted to live this last chapter of my life! I'm not afraid of dying but I'm afraid of not being able to do certain things before I die. I feel chemo is really getting in the way.

I am also highly ER & PR + and want to see if anyone has tried just an anti hormonal route. Currently I have active ovaries but I'd be happy to have them taken out and start an AI (even if it doesn't give me as long as the chemo). Quality is more important for me now.

I am meeting my onc next week and will be raising this with her.

Any thoughts? Advise? Has abyone done just an an anti hormonal route??

blondedoris

Heya Pixie

I didn't get on with Xeloda (mainly stomach issues) and the next chemo I had was paclitaxel - it was a walk in the park in comparison, and controlled my lung/lymph mets. I rely on radiotherapy for bone mets as they don't seem to respond to chemo.

Not all of the stage IV chemo are as bad as X and FEC-D. Can you ask your Onc about other chemos to try?

Pixiepixie

thank you for the reply. I did 12 weeks of Paclitaxol last year so unsure they would try that again? Did you lose your hair doing Paclitaxol only?

I don't mind being on chemo but don't want a blotchy horrific looking face and don't want to lose my hair again... Surely that's not too much to ask?

So frustrated 😁

susan_02143

If you are willing to shut down your ovaries, Faslodex with aromasin can be a very powerful combination with more limited side effects. Certainly you don't loose your hair. You might well have bone and/or joint aches from the aromasin, and a sore butt from the Faslodex. This combination got me to NED and I stayed there for five years.

My response to Xeloda has been no where near as drastic as yours. It has been far easier than Ibrance, which didn't work for me, but certainly harder than Faslodex.

Good luck at your onc appointment.

*susan*

Pixiepixie

Susan wow that's wonderful that the combo got youto NED for 5 years! I will mention it to my onc. I know we are all so different and respond in various ways to treatment but how my body is reacting to Xeloda just doesn't seem right

susan_02143

pixie, We have to listen to our bodies.... it is all we have after all!

Bestbird

I'm sorry to hear you're having such a hard time from side effects of Xeloda, and below from my MBC Guide is information about possibly lowering the dose. You (and others) are welcome to request a complimentary copy of the 120+ page booklet by visiting the top of this page:https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

If you have bone mets, you should also be on a bone-directed therapy such as Xgeva, and I agree with you about exploring hormonal therapies, which in cases of ER+/PR+ mbc can be as effective - and even more so - than chemo. At the very least, you should seek a second opinion about your treatment!

• Xeloda (Capecitabine): Xeloda is a commonly used oral chemotherapy drug which is often used before other chemotherapy drugs are prescribed for MBC.Xeloda may cause "Hand Foot Syndrome," which is evidenced by peeling and/or blistering of skin on the hands and feet. (The section entitled Therapies for Hand Foot Syndrome contains more information about this syndrome and related therapies).

Xeloda/5FU and DPD Deficiency: Before taking Xeloda or 5-FU/fluorouracil (from which Xeloda is derived) patients should consider getting tested for "DPD Deficiency." DPD stands for dihydropyrimidine dehydrogenase, which is an enzyme the body makes that helps to process thymine and uracil, which make up part of the structure of our genes. DPD also helps to break down Xeloda and 5-FU. If a patient has low levels (a deficiency) of DPD, they will be more likely to have severe side effects from these chemotherapy drugs because with low or no DPD, the chemotherapy drug builds up in the body and cause severe to fatal side effects.Testing for DPD deficiency usually is done via genetic testing, which should be discussed with one's Medical Oncologist since approximately 3% - 6% of the population has at least a partial DPD deficiency.From: http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/dpd-deficiency-and-fluorouracil

Due to considerable side effects from Xeloda, studies have been done on decreasing the drug's recommended dose and frequency. A dose of 1,000 mg/m2 administered orally twice daily (morning and evening; equivalent to 2,000 mg/m2 total daily dose) for 2 weeks with 1 week of rest may be may be appropriate for patients with significant side effects.From: http://www.drugs.com/mtm/capecitabine.html and http://www.drugs.com/dosage/xeloda.html