taxol for pertinieum mets

[marianne88]

hi. I just started taxol for pertinieum Mets and wondering if anyone is doing this treatment. I have 3 weeks on and 1 week off. Can’t eat much cause I have small bowel blockage. How is everyone doing in this treatment. I am really nervous. Thanks. Marianne

[bikebabe]

hi Marianne

I had taxol (palcitaxal) for 11 straight weeks (but not for the mets you describe. You might have flexibility with the frequency if it’s too harsh. Having come through it, the worst bit (for me) was the setting up /iv placement and I said I would insist on a portacath if I ever needed it again. I now run a mile from anyone wanting to poke my veins! I had Classic chemo symptoms and hair loss within 2 weeks as didn’t go with the cool cap and my scalp was full of sores which made wig wearing a no- no (bamboo soft material caps was my go to) and my hair is thicker then ever and curly. Drank a lot of ginger cordial to stay on top of the nausea and always did a little walk every day. They suggested small regular amounts of bland food -minimal roughage. And I had a few cardiac issues.

[marianne88 in reply to bikebabe]

Thank you so much for responding. It helps a lot ❤️

[Onedayatatime60]

Hi Marianne I had 12 weeks of weekly Taxol at initial diagnosis. What I can say, is everyone is different in how they experience side effects. I met a woman who worked all through Taxol treatment ( I could never have done so), but overall, it was manageable. For me, the worst part was constipation so bad I had pain when having a BM and developed hemorrhoids. Finally, I started taking daily Restoralax and additionally as needed Senokot. Keep on top of constipation to avoid painful hemorrhoids. I worried about becoming bowel dependent on meds to keep me regular until I was told, don't worry about that for now.

There was also periods of diarrhea but that was more easily managed.

I lost weight due to food being so unappealing, so eat what you can, when you can. Chicken noodle soup and toast was my go to and try to stay hydrated.

Fatigue. I was tired during the day and napped in the afternoon almost every day. I did try to walk 30 min most days. Nap if you need to!!

I asked Onc for Zopiclone for sleep, (I had previously never taken a sleeping pill in my life).

I took it for 12 weeks during Chemo (3.75 mg most nights but 7.5 mg on infusion days since steroid made sleep impossible).

I couldn't have gone with poor sleep on top of everything else

Hair loss. You will lose your hair. I was never told about the possibility of scalp cooling and might have tried it as Taxol is one chemo it has shown good efficacy with this.

But the good news is, unlike some chemo, hair loss is not permanent with Taxol

The best and most important part of all of this .....Taxol was very effective and rendered my liver mets undetectable.

So it was worth the 12 weeks of any discomfort.

Overall, I think Taxol is more tolerable than some other chemo meds. I wanted to share my side effects, I don't want to scare you , it really wasn't that bad. Every night I sat down with my husband and adult son for dinner (even if I wasn't eating what they ate) but we could chat and laugh.

I hope you have good results and manageable side effects.

Let us know how it goes ♥️♥️

[marianne88 in reply to Onedayatatime60]

Thank you so much for your wonderful advice it means a lot to me. ❤️

[LibraryGeek]

Hi Marianne,

I did 6 months on the same schedule as you but for different mets. I found it very manageable and felt quite well in between treatments and was living a normal life. I did have insomnia on the steroids but didn’t feel tired- hadn’t felt so energetic in years! I had splitting and brittle nails, and also some neuropathy in my feet, but that already started on Everolimus. Sadly I had progression after 6 months, although it did clear up the breathlessness I had been experiencing from fluid on the lung.

I hope you do well on it with few side effects.

Jackie x

[marianne88 in reply to LibraryGeek]

Thank you Jackie for sharing. It means a lot to me ❤️