Long term Taxol

Hi, Beth.  I did taxol, with carboplatin and a pill that was either a placebo or a parp inhibitor (I was on a trial).  This was from February 2012 through November 2012, every 3rd week.  I think that's about 12 treatments.  This combo brought a giant liver in my tumor down from almost 11cm to about 3cm, but boy what a ride.  It was tough.  I had the fatique and tingling/numb feet.  I still have lingering joint pain.  I cried almost every morning in the shower, however, I managed to work most days.  The side effects lasted about a week after treatment and then I'd feel ok again.  I had to go off the trial because the tumor started growing again, but who knows if the oncologist will want me on it again.  I am married with 3 children and really wanted to push myself for my family, but I can remember crying to my husband more than once that I couldn't do it anymore.  Then the side effects would go away and I'd be ready to fight again.

Is it worth it?  Most definitely. I pray for all of us daily. 

- Penny

Beth,

I'm doing weekly Taxol, and have been on it since mid July. In that time, my TMs have gone down from 2,600 to 53. I have bone mets in my spine and rib cage, and as per the last scans, they are resolving nicely.

My experience with dose dense (every three weeks) is from my first diagnosis, 7 years ago. I MUCH prefer weekly. Dose dense kicked my ass. On weekly, I have one fatigued day a week, rather than the week of misery I had on dose dense.

I am sorry you have to show up at the treatment center so much. That would be wearing. I get my blood work done before the infusion. I even got picky and have asked them to take it from my port pre-infusion as I have never failed my counts. They used to use a finger stick, and as I'm a knitter, I didn't like that.

I am confused as to why you are getting two Neupogen shots. On weekly, most of us seldom need even one. Were your counts that low? No wonder you are hating chemo!

Like yours, my Onc wants to ride this pony for a good long time. I know my TMs were the talk of the Tumor Board, as my volume of mets didn't accord with the TMs. I'm looking forward to anti-hormonals and hair too.

Take care,

Jennifer

I did Taxol weekly (3 weeks on, 1week off) for 9 months, until progression and I had to change treatment. While my bone mets continue to be a problem, Taxol wiped out more than 15 liver mets and 2 years later, my liver is still NED. Definitely worth it! It was tough though, the fatigue was pretty bad from month 6 onward.

Hi, Beth,

I have been on weekly taxol since November 4, 2011 - yes, tomorrow I start round 16, I think (might be 17) -too tired to look at calendar and figure it out.  I lost most of my hair, but it started growing back in early May.  Used a headband when it was falling out to cover up the growning bald spot atop my head, but then had it cut short - probably about 2 inches all over now, and I use mousse to keep from looking like Alfalfa. I don't bother with scarf or hat or wig.   I started using l-glutamine in January (500 mg a day - 1 pill) to ward off neuropathy.  Every time my toes start feeling numb, I increase dosage by 500 mg.  I am at 8 pills (4000 mg) a day right now.  The l-glutamine was suggested by Coolbreeze in one of her posts, and I did some literature search and found a clinical trial where they had used l-glutamine (10 g daily for 4 days after chemo) to help with neuropathy for high dose taxol (one administered every three weeks).  Onc at MD Anderson knows about the l-glutamine and is ok with me taking it.  She also wants me to stay on taxol until it doesn't work (I have progression) or until the side effects get so bad, they drive me off.  I do miss a week here or there if I have a trip that I want to take.  My local onc told me he had one lady that was on taxol for 72 months and it kept her NED.

Hang in there,

Becky

You are stage IV, you will be on treatment for as long as you live. 12 weeks of treatment was the potential schedule if you are under IV. Have they talked about doing radiation on your brain?

I have them take my blood 1/2 hour before my appointment with my onc. They access my chemo port and leave the needle in. I do go back and get nepogen shots when I need them.

Some people have fewer joint aches with there nuelasta shots if they take Claritin before.

I'm doing weekly taxotere/Herceptin and Perjeta once every three weeks. On a previous chemo, I had the hand tingling and they prescribed Lyrica for me.

Try Ritilan for fatigue.

Remember there are only so many chemos to go through. As some point, maybe years from now, you might have to decide what sides you are willing to go through to stay alive.

My pharmacist told me dosage for Taxol is based on your body mass, ie weight x height. So everyone's dosage will be different. The dosage for 3 weekly vs once in 3 weeks dosage is different too. 

I'm so sorry you've had such a bad time with Taxol. I started with L-glutamine but have stopped as I'd re-started TCM. Both appear to have helped with neuropathy for me. 

I've seen a few oncologists and I've noticed the more experienced ones have recommended on-going treatment non-stop while the younger ones have said to treat it for the usual 6 cycles and then stop, re-start chemo when the mets come back. The more experienced ones are very jaded and tell me they prefer to treat it like a chronic disease with long term on-going chemo. One told me bluntly, I think you'd be stupid to stop it if it's working for you, right? 

I've been coughing badly for the last 2 months and just finished my 4th course of antibiotics. But the liver met shrank from 4.5cm to 1.3cm so the side effects have been worth it. 

Of course, the quality of life comes into the picture but it is possible to take chemo holidays or switch from once in 3 weeks to 3 weeks on and 1 week off to 2 weeks on and 1 week off etc when your disease becomes stable and/or you reach NED. Perhaps you could discuss this with your oncologist. 

Hope the side effects will be better managed with some medication and you'll feel better soon. Take care. 

high hopes there is a thread called weekly taxol for Stage 4 which is still active. I've been on weekly taxol for nearly 3 years now with no neuropathy while I believe I'm an exception it is possible to be on it long term with few issues. I have recently transferred on to the oral version called oraxol which is still a trial drug but so far seems to have fewer side effects.

Good luck with your treatment and look us up on the other thread. Sorry I can't work out how to post a link