Weekly Taxol for Stage 4
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Thanks Neephee! It's a real drag being on this chemo indefinitely. If anyone tells me, "Well it's keeping you alive!", I one more time, I might just swing for them!!!
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How are my Taxol buddies doing? I will finish 4 cycles of Taxol this week (12 tx) and long for a break, just soooo tired.
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Hello! I'm pretty wiped out, too. I'm doing Taxol every three weeks and get some energy in between, thank goodness. I'm planning on returning to work at the end of the month. We'll see how that goes and how long that will last! I'll be doing a scan soon to see how things are going. I really hope Taxol is working! I hope you are well and that Taxol is kicking some cancer butt! Take it easy!
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Hello everyone. I have progression and will be starting weekly Taxol in 2 wks.
Any and all tips welcome. I already got a fade clipper cut to prepare for the hair loss.
Someone said bring ice for hands and feet to help with neuropathy and others have said be sure to eat while being infused and ask to slow down infusion time if possible.
Anything else?
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Hi Lita, sorry for the reasons that bring you to our group. As you already know, hydrate before, during and after. Take the pre-meds they will give you. Decadron will probably be part of the mix, you may have a high followed by a small down for a day or two. The only reason I have a longer infusion of 2 hours instead of 1 is because I had a minor skin rash twice, hence 2 hours works well for me. I didn't lose my hair with Taxol, quite extraordinary but I'm part of the 13% who don't lose it. It has thinned though. Best to be accompanied as you may be sleepy after with the iv Benadryl they will give you. Make sure you walk out of there with anti-nausea meds and Imodium scripts - you may not need them but just in case. Wishing you the very best on this tx.
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I'm doing it every 3 weeks instead of 3 weeks in a row...just had number 4 today, will scan in 3 weeks...but for the first time in a LONG time all my liver numbers are with in the normal range so we are optimistic. I feel 100X better then I did on any of the oral stuff I did....other then being bald, and no eye lashes..you wouldn't know I was sick...and I hate wigs so most of time I am in a hat...
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I got my hair cut really short, keet. Did you do anything special while on Taxol? Ice the feet and hands, etc?
Did anyone take any vitamins like B6 to help with neuropathy?
Thanks.
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Hi ladies,
I see my MO next week. I have been on Navelbine, both IV and oral for most of this year. I had to stop a month ago due to severe neuropathy, now taking Lyrica. I know the chemo will be Taxol, not sure if weekly or every 3 weeks. I have a couple of questions if you don't mind:
Is weekly better in regards to neuropathy or no difference?
Is weekly more common for stage IV?
I will be reading every page of this thread, I have to make this work, it is my last option for treatment.
Thanks
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Lita- yes, I iced my hands and feet. At MSKCC they gave me special holders for the ice for both my hands and feet which I brought to each treatment and then returned when I finished Taxol. I didn't do anything else special. I did cut my hair short and when it started falling out I cut it even shorter but I never lost all of it-weird. I did lose my eyebrows and lashes which bothered me more than anything else.
Babs
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Freya: How severe was your neuropathy? I can't really answer your questions very well. I've done weekly Taxol (almost 2 cycles- 5 total of that dose) and then switched to every three weeks. I'm guessing the neuropathy is less severe with weekly because of the lesser dose, but it could also be cumulative. Good luck reading through this thread! It's a bit overwhelming, but great info from so many experiences. My issue has been lowered RBC AND WBC! But managing both with other meds. And my hair is GONE. Like Babs said, the missing eyebrows bothers me much more than the hair on top of my head. I think the missing eyebrows gives more of that "sick" look so I keep practicing drawing them in so they don't look crooked or funny. A work in progress for sure.
Lita: I did start taking B6 and B12. I felt like it KINDA helped. Then my doc prescribed gabapentin. I feel like that KINDA helps also. We'll see.
Good luck to those starting Taxol. I hope you all manage the side effects and that it zaps those cancer cells away. Cancer be gone!
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Hi guys. Sorry I haven't posted for a while. I just hit 4 years of weekly taxol although the last 18 months have been on the Oral version Oraxol. So much easier to tolerate and I like not having to go into the hospital so frequently. It's still only available as part of a trial but worth it if you can get on it.
I just turned 50 which was one of my goals when I was first diagnosed Stage 4. I celebrated with a big party and am off to Samoa for a week with a couple of girlfriends.
Take care everyone
Shaz
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Shaz: Happy Birthday! So happy you got to celebrate this milestone! I hope you have an amazing time in Samoa! Congrats on 4 years of weekly Taxol! That's so awesome! Woo hoo!!!
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Hi Wilma, and thank you for replying. The neuropathy in my feet was bad, I couldn't put boots on (winter here), as it was too painful. Just bumping them was enough to bring tears to my eyes. Walking was a problem for a couple of reasons, pain and my balance was off as I didn't really know where my feet were. My fingers are not too bad, just slight numbness and a bit of tingling. I'm on Lyrica and things have improved a lot, not sure if it's enough to start another chemo yet, but it's scary not being on any treatment.
Shazza, 4 years, wow, that is fantastic. Have a great holiday!
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Shaz, are you going to Western or American Samoa? I've been to both. American is smaller and more, well, Americanized. Western Samoa is more like the true polynesia, just gorgeous.
You'll have fun.
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Freya: Ouch sounds pretty awful about your neuropathy in your feet. Thanks for describing it because I was never really quite sure what they meant about it being "severe". Your case certainly sounds severe if you can't even get your boots on. How long were you on Navelbine? And did the neuropathy start off really badly or was it cumulative? Thanks for the info. It helps so much to hear the experiences of others. Good luck with everything!
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Shaz- what a wonderful milestone that you got to celebrate- have the best time!
Babs
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Shaz - Happy Birthday and have a great time!
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Hi All,
I just started Taxol; will have 3 weeks on, one week off. I have talked and read about so many who had few issues with it and tolerated Taxol pretty well, so I could not believe how hard my first treatment kicked me in the butt. (I was previously on Femara and iBrance for six months, only to find out the tumors grew larger. My onc told me she thought we should get them under control with Taxol and could then try another oral chemo med.).
Did anyone else have severe exhaustion and dizziness after their first time on Taxol? The dizziness was so bad they gave me Meclazene which helped some. So far, no neuropothy or hair loss, but I expect to lose my hair by the third treatment. Just wondering about the dizziness and if they can give me something other than more steroids to combat the extreme fatigue?
Thanks for all of you who share their experience on this site. So valuable for us newbies!
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Hi Booboo1,
I didn't experience the dizziness you mentioned but definitely get the extreme fatigue. How long does the dizziness last? Although I switched over to every three weeks instead of 3 weeks on, 1 week off, I have found that keeping track of the side effects and symptoms each cycle helps me figure what to expect and how to deal with it better each time. Good luck and I hope things imrpove!
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groovy, i'm starting taxol in a week and a half. I kept track of my symptoms on Xeloda. Diarrhea was the worst, along with hfs. After a while, I could see a pattern, based on which day, what I ate, etc.
From looking at your history, I see that Xeloda wasn't really a winner for you. Sorry for that. I was fortunate to get almost 15 months on it. It was very fatiguing, but I got thru it. I'm somewhat apprehensive starting a new regimen because each successive course of Tx depletes our bodies more and more; I'm already going into Taxol with depleted red and white blood cells, PLUS the brain issues. I'm not sure what they'll do if the brain mets are really extensive...depends on MRI results.
I'm sure I'll make a lot of new friends on this thread.
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Hi Lita,
Yeah, Xeloda didn't last long for me and I had to move on from it on to the next treatment. It is frustrating when a treatment doesn't work because we all want to be able to get as much as we can from each one to stretch out it's usefulness! How are your depleted red and white blood cells being managed? I am on Neulasta On-Pro for the WBC and Procrit for the RBC. When I first started on Taxol my low RBC weren't coming back up with the Procrit so eventually I had to get a blood transfusion. That was a good thing because since then I have felt much better and my RBC have stayed in a good range. My weird Taxol side effect has been tingling/ numbness in my chin/ lower lip area. The doctor can't really figure out what is causing it; I think it might be facial neuropathy but he said that is a very uncommon side effect. Who knows! I'm just glad the brain MRI came out OK. It has faded since I first got it, and never went away completely. It's just a little annoying, but manageable.
I hope everyone has a great week!
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GroovyWilma,
Thanks for your reply. The dizziness has stayed with me since my first infusion. They gave me Meclazene (sp?) for it, and it does help. I have to wonder what all of these drugs are doing to our kidneys. Oh well, that's for another day. It could be that they need to lower my dose.....not sure. I'll post again after tomorrow's Taxol infusion and let you all know what my Onc. says.
Lita,good luck with your Taxol journey. Hope all goes well for you.
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Groovy...I had facial numbness after my very first Zometa IV bone infusion. A not-so-common SE, but it does happen, according to the literature. It did go away after a while. They told me to take a Benadryl b4 each subsequent infusion, and it hasn't happened since then.
It will be interesting to see how I handle Taxol.
My RBC and WBC counts are hovering at the lowest end of "normal" but not enough to warrant a blood transfusion or Rx like Procrit or or Neulasta, but time will tell.
I'll keep you all posted RE the brain scan.
Does anyone if know if Taxol crosses the blood/brain barrier? Don't know if they will do cyber knife or something simultaneously for brain mets.
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Lita, I hope you get a good run out of the Taxol and it improves your pain problems. Best wishes for the brain scan.
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Lita - Taxol doesn't cross the brain barrier.
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My oncologist told me I had a steroid crash, and that's what caused the dizziness and extreme fatigue. She dialed down the steroids for my treatment this week, and no more dizziness. I am still a bit tired, but I think that's normal with Taxol.
Anyway, I wanted to post in case anyone else has a similar reaction.
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Reaspectfully signing out...20 plus large brain mets. Rads will only give me a month or 2.
Also bleeding From some mets. Only God know why I'm still here.
Happy trails, my dear sisters.
God. Less u all.
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After 8 months of weekly Taxol, my hands and feet are suddenly beginning to be a real problem. It's weird because I had NO symptoms of CIPN for about 6 months, and then suddenly it hit. I woke up one morning with almost NO feeling in my three middle toes. After that it began to ascend up my foot a little with each infusion. A little worse each week. The whole foot pad area is numb by now, and I can tell that if it gets up to my arch area, I will start having real trouble walking and keeping my balance. I have had some foot cramps also. My fingertips are going numb now.
I have iced my hands and used cold gel socks at every infusion. But in hindsight, I do not think I did it entirely right. I usually started icing after my premeds, right when the Taxol drip started. I lately read that we need to be icing BEFORE the Taxol drip starts. So now I start about 20 minutes before, while the Benadryl is dripping. Shoot.I have labs and a CT scan on Friday, and then I see my oncologist on Monday. I'm guessing we will have a discussion of dose reduction. Naturally I'm ambivalent about lowering the dose when this dose seems to be doing the trick for the time being... but I really need my feet and hands to function!! Everything is a trade-off in this blasted BC game.
Have any of you had a dose reduction?
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hey all,
So we decided on weekly Taxol with MO yesterday. I will start with it tomorrow.
Read your posts... my experience with Taxotere seems to show hope on my expectations with Taxol. Hope it works fast!
Hugs
Ebru
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