Indefinite weekly Taxol with Carbo every three weeks?

Emily-Louise

Hello!

After 14 months of stable bone mets on hormone treatment, we had the heartbreaking news of liver mets last week, I am now faced with indefinite weekly Taxol, along with Carbo every 3 weeks, just wondering if there is anyone out there with ER+PR+ HER2- that has managed this combination, along with success….. feeling overwhelmed.

Moderators

I'm so sorry you got this unwelcome news. We truly hope this treatment works for you.

Thinking of you!

The Mods

blainejennifer

Big Hugs. I know how it feels to get the news of liver progression. I had to lie down on the floor of my Onc's office, and did great big snotty sobs. Nurses were sent in to deal with me.

I am familiar with weekly Taxol - did it for about a year. I am less acquainted with Carbo added, but I am sure others who are will chime in. Check out the weekly Taxol thread for Stage 4. It should be reassuring.

Am I right in reading your sig - that you have been dealing with this for 8 years and only progressing to soft tissue mets now? That's super.

Best of Luck,

Jennifer

Emily-Louise

Jennifer,

After being diagnosed with bone mets 14 months ago, I thought that was the worse news I could ever have, I thought I was on top of this, I thought I had this, when the words came out of my oncologists mouth, its not good, my heart shattered for my children and husband, I now feel I now truly understand devastation.

Why did you come off taxol Jennifer? What were your side affects? I can't seem to find anyone that has had carbo, but what effects I have found aren't exciting me……

My sig was all messed up, its correct now, no such luck only 14 months from stage 4 diagnoses to soft tissue mets, I was going for 8 though……

Where are you at with your treatment Jennifer?

Thanks again xx

pajim

Emily-Louise, the HER2+ women do carbo and taxol. You might post on their thread.

blainejennifer

Emily-Louis,

When I was first diagnosed Stage 4 in 2012, my TMs were at 800. I was on Arimidex when diagnosed, as I was still finishing up the protocol from early stage diagnosis in 2006. So, my doc thought to try me on Tamoxifen. After three months, the TMs had rocketed to 2,800, and my PET scan could be used for Christmas decorations.

That's why he suggested I try weekly Taxol. He wanted to shut the disease process down. And it did. I did about a year of weekly Taxol, and left it when my TMs started creeping up again. You'll find this process is like cancer whack-a-mole. My Doc likes to rip me off of a regimen when my TMs starts climbing slightly (my TMs are very diagnostic - some aren't) so that, in the future, I might be able to revisit some of them.

For example, I went off Xeloda about a year ago. Tried Letrozole/Ibrance for 6 months, and developed liver progression (the snotty sobs, remember?). To shut that down, Doc put me on Halaven for about 6 months. I responded really well. Another, more chipper sort of doctor might even say I was NED, but my Doc doesn't believe in that sort of glad-handing.

Halaven kicked my fanny. The low level anaemia kept me from getting on with life, so as soon as I was stable for a few cycles, I asked to be moved on to something less fanny pounding. Ta Da - yesterday I started CMF, which is the old-fashioned infusion form of Xeloda.

Weekly Taxol wasn't bad. Remember, it is a lower dose, so it isn't the ass kicking you remember from 2009. I was infused on a Thursday, so that my weak days were on Saturday and Sunday, when spouse was home to parent our son. I did lose my hair, but grew baby hair. If If I threw talcum powder on it, it faked people out that I was doing some kind of Amber Rose homage. I kept fingernail polish on, because your nail beds become photosensitive on Taxol, and UV exposure will cause your nails to lift. Watch your hemocrit, because low-level anaemia is a huge bore. I hate the shortness of breath and the general sense of fatigue.

I'm postulating that your doctor is adding carbo to the mix because of the 14 month interval between diagnosis of bone mets and soft tissue mets. Gotta say, I agree. I wanted cancer napalm when my TMs were touching 3,000.

What supports do you have? Who can help you when you need it? Get those lined up. You might need them after the Carbo infusion.

I used to get ready for infusion day like company was coming over. Got the shopping done, laundry done, and got the place looking semi-presentational. Thursday night was usually an insomnia night thanks to pre-med steroids, so I made sure I had plenty of good books and videos handy. My drawers and closets never looked better. Spouse is a heavy sleeper! Friday, I was still going strong, but could feel the steroids wearing off. Saturday and Sunday were for napping, and pointing at things for the menfolk to do. By Sunday night, I'd be back on form. I still managed to do a two mile walk every day, and gardened like a maniac when I could. Golly, I almost miss Taxol. Halaven was tough.

Once your Doc has gotten you stable and decreased your disease volume with chemo, then you guys can talk about a less intrusive regimen. I got a year out of Faslodex, which I wasn't expecting because the anti-hormonals aren't my best buddies. I got 13 months out of Xeloda. I'm 5 years out from the diagnosis, and my therapy quiver isn't empty.

So stay strong. Your job is to stay in shape for the rigors of chemo. Eat as well as you can. Get exercise whenever you can. Talk to your doc about what supplements might be beneficial, but please don't fall down the woo well when it comes to Complementary Alternative Medicine. I live in an academic town, and I am shocked at folk who have suggested that I try a high dose antioxidant regimen for cancer. Studies are showing that that sort of dosing strengthens cancer cells, preventing cellular death during chemo.

But, a baby aspirin every day helps with preventing the clotting that cancer patients are sometimes prone to. Also, google what some studies are showing about ranitidine (for acid tummy), and melatonin. And, truly consider a port. It's nice to have both hands free during the infusions.

How old are your kids? Are they old enough to help Mom out, or are you still mother henning? Mine was 6 at first diagnosis, and 12 at stage 4. I think he will always remember me as Cancer Mom. There's some bad to that. On the other hand, he's had to be useful. I might have cosseted him too much had I not gotten ill. We talk. We might not have, as much, without time's winged chariot in the background.

Hugs again. Let us know how you are doing. The ladies on this list are the only folk in my life that "get" it. Even the great nurses at the practice I go to have never had cancer.

Jennifer