Weekly Taxol for Stage 4
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Yiippeeee. That is great news.
PS: If you are getting headaches from Taxol treatment, ask for the drip rate to be slowed down. It helped me. At a 1 hour push, big headaches. 90 minute push, none. Weird, but true.
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awesome news!
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Fantastic news Maychen. It is always great to hear about good news on this site. I hope all the others on this thread are also getting good news.
I have potentially another 12 weeks on carbo/taxol and then they will move me to a gentler chemo (provided no progression in scans). I get taxol weekly (only break if I need scans). My next scan is in 5 weeks.
Carolben- My oncologist said if I had no progression on carbo/taxol and was not impacted by neuropathy then I could always use these drugs again at a later date. So I guess the answer to your question is that you can restart taxol at a later date provided it has not stopped working for you.
I am hoping for hair by Christmas!0 -
YAY and YAY again Macyhen!!! What fantastic news - am soo happy for you!
These are the good moments, to enjoy right now and not project into the future - hope you will celebrate big time, every day!!
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It's weird, I am happy but I feel a little off. It's not what I expected so I don't know how to feel or react. Thank You all for your comments, you guys are my friends and I Love and Respect all of Y'all!!!
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Gentle hugs to you, Cynthia. Delighted to read about your good news!
I want to ask you about how bad your neuropathy was on taxol. I don't know how bad it has to be to stop taxol. My fingertips feel both numb and tingly and my fingernails feel tight and as if they are going to pop off. I think they are lifting up. A couple of my toes are numb and the toenails are black and will fall off, I think. My onc has moved me from a 6 weeks on/2 weeks off cycle to week on/week off to reduce symptoms. I'm doing better on this regime except there has been no reduction in the neuropathy. As my bone scan was stable I'm nervous of moving on to a different chemo in case I run out of options further down the road. Luv xx
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Aoibheann,
Are they giving you Gapapentin for the neuropathy? It truly helps. While on Taxol, I took 400 mgs nightly, and it fended off the nerve damage.
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Hi Jennifer
I've been on lyrica for nerve pain from initial diagnosis, now on 125mg twice a day. I asked about changing to gapapentin but the palliative care doctor said both drugs had similar effects and she'd prefer me to stay on lyrica. They don't treat for SEs here really. My onc just deals with the cancer and when I talk about pain he refers me to palliative care or pain specialist. Maybe I need to increase the dosage of lyrica?
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Aoihbeann,
My MO swore that Gabapentin worked better than Lyrica for neuropathy. It's also cheaper than Lyrica.
Has anyone else heard this?
Jennifer
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Macyhen,
Congratulations on your great news! You should celebrate ... But yeah, I get you. Sometimes even though good news is what we want, we still get these odd feelings as if the good can't last, what if this and what if that. We never seem able to completely stop worrying. But just for now, celebrate a little and enjoy the awesome news!!
I hadn't heard that gabapentin works better, but it is what my MO ordered for me and it seems to be doing the trick! My neuropathy isn't bad at all and am not having any problems with nail beds lifting, nails turning black, etc, I am on low dose taxol though and that could be making the difference.0 -
Cynthia fantastic news. But I know what you mean it's hard to really celebrate when you don't know how long it's going to last.
I was switched from gabapentin to lyrica for nerve pain so my palliative care team must think it's more effective. Not sure I've noticed much difference.
We've moved house and caught a break when my chemo unit screwed up my patient transport for chemo the day before the move. They ended up giving me chemo on the moving day so had to pick me up from the old flat and saved me working out how I was going to get down 3 flights of stairs. They then dropped me back at the new flat which is only 1 flight up. Hoping when more settled I'll be able to manage the stairs.
I'm currently back in hospital again as fluid building up on lungs again. Getting ultrasound tomorrow to see where it can be drained from.0 -
Have had fluid drained but onc has told us she doesn't think the chemo is working. She gave us the option of stopping treatment in favour of quality of life. We decided we wanted to get ct scan done first. I'm hoping to at least get home to sort out some affairs. Not ready to give up just yet.
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Oh Gail....what hard news to hear. I am glad you are doing another CT to see what exactly is going on. My prayers are with you...
Hugs,
Robin
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Gail,
Have you done all the antihormonals?
Jennifer
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Gail, I so hope and pray that you get a second opinion and another treatment that works for you. As Jennifer pointed out, perhaps there are other antihormonals you can try. Since you live in the EU, perhaps you can even try Bazedoxifane (it's marketed as an osteoperosis drug called Conbriza over there, but it's supposed to be a very promising anti-hormonal for MBC, especially for tamoxifen-resistant ER+ cancers).
http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/000913/human_med_000723.jsp&mid=WC0b01ac058001d124
I'm wishing you peace, courage, and an extremely well-deserved turn of good luck. (((Hugs)))0 -
Hey Gail. No advice but sending through positive thoughts and prayers. I hope the CT gives good news and they can come up with a great new treatment plan.
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Gail, sending hugs and praying for a good ct scan and a new treatment plan!!
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Dear Gail, this disease is so hard to bear. Did you get that second opinion? Sending you prayers and hugs across the sea xx
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Ladies
Just wondering how your fingernails are with taxol. Mine feel very tight and as if they might fall off. A couple of my toenails did turn black and fall off and my toes are numb. I use a moisturing and dark nail polish but I can see the nails on my right hand, which has the worst neuropathy and LE, are starting to shrink and curve inwards. My fingertips are beginning to hurt more. They've felt numb and tingly and uncomfortable for ages. I don't want to mmake a fuss with the onc as the taxol seems to be keeping me stable and he's already reduced the dosage to week on/week off. What dosage gabapentin/lyrica are you on? Does the gabapentin reduce the neuropathy damage or just the pain and discomfort? I think I read somewhere that the neuropathy doesn't always go away after taxol is finished. I'm going round in circles...
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Hi Everyone
Sorry to say, my time with Taxol is over. Slight progression in my nodes, but my TM's have skyrocketed. Onc wants to get ahead of it. So...on to Doxil for me.
Wishing you all the best with Taxol.
Hugs!
Robin
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Aiobhean sorry about your nails. Haven't had any problems with mine. Hope it's a good sign that taxol is working for you.
Robin so sorry about your tms. Hope you have more luck with doxil.
My onc has been to see me. Ct scan shows progression in liver. So looks like taxol not working. She doesn't think any chemo is likely to work for me now. A clinical trial would be good but I'm not well enough to qualify. She has suggested another hormonal drug called Megace. I think this is on a nothing to lose basis. Hoping to get home today.0 -
Gail, I have seen other women here who have had no luck with a lot of chemos, and then suddenly one of them does work. If you have the energy and strength, I would speak to your onc about trying another chemo. Just because taxol didn't work doesn't mean that others will also not work. From what I've seen here, I think there are women that would prove your onc wrong.
On the other hand, if you are tired of all the SEs, then that is a different story. But it needs to be your decision, and not because your onc doesn't think any other chemos will work.0 -
Aoibheann, Sorry you are having so much trouble with neuropathy and your nails. I am not having any problem with my nails though I do experience neuropathy. I take gabapentin twice a day. I've been on taxol since December 2012, 3 weeks on, 1 week off. I had the nail issues with taxotere and had to stop the chemo because the neuropathy got so bad. Hated to stop because it was working well on my cancer.
@ Robin, best wishes with the doxil, we just keep trying til we find something that kicks some cancer butt. I've been on doxil before but will have to look back at my notes to see why I was stopped.
Gail, dear Gail, I agree with latte. Only you should make the decision when NOT to try another chemo. I've lost track of the number of chemos I've tried. Some have worked for a while, some not at all, but we keep looking for one I can tolerate, that works, and has minimal SE's. It is your life, your decision. Will be thinking of you as you struggle with the decisions you need to make. Who knows ... Maybe megace will be your magic bullet!!!0 -
Aoibheann,
I had exactly what you're experiencing with your nails. For the tightness, I put hot oil on the nails and pushed them back to their regular, flatter shape. It worked! After I read about nerve damage becoming permanent if you go too long, here in these blogs, I confessed to my Onc my symptoms and shortly thereafter we decided to stop the Taxol. It was hard cuz it was working. I've been off the Taxol for two months and still have tingling. They tell me it can take a couple of years to heal the nerves. I'm still on glutamine and B6.0 -
Hi Candyisdandy,
Thanks for info re nails. What oil did you use? Did you use any particular type/make of nail polish, cuticle cream etc? My onc seems to be against all supplements and told me not to take vitamin B as it interferes with taxol so I've been afraid to take anything. It's probably too late to take anything now as I've been on taxol since January. I'm on a fortnightly dose now because of SEs.
Take care xx
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Aoibheann, I put ice packs on my fingers and toes while I get taxol. The nurses say it doesn't help but I think it does.
I only get taxol every three weeks, but the one cycle I forgot to use ice my neuropathy got much worse. So I think it works for me. Maybe you could try it?0 -
Aoibheann,
I didn't use anything special. I ran the water hot from the tap, used baby oil because I already had it, and pushed the nail down flatter. I would push down the nails at other times too because it relieved the tightness.
My nail beds became very short. Some nail beds are convex rather than concave
now too. But I kept the nails the same length; so that once they were painted they looked normal.
I did go to the pharmacy and buy a soap that is used for washing your hands before surgery. I washed my hands and poured that soap down into the nails. I also soaked my feet in a tub of water with that soap in it. I didn't work in the dirt in the garden during this time. All because I was worried about infection.
Best to you!0 -
Candyisdandy, Latte,
Thank you both for your suggestions - I think I'll try everything you mentioned! It can't do any harm and hopefully will help.
Thanks again and take care
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Aoibheann, one more comment about the ice packs. When I was on taxol the first time in 2010, sanofi-aventis actually provided chemo patients with ice gloves and shoes for use during chemo,so I decided that if the company that makes the chemo provides them there must be something to it.
In my new chemo center they don't have the gloves, so I use bags of frozen peas that I refreeze after each session (obviously I won't eat them ever).0 -
Thanks for that advice, Latte. Of course, I forgot to bring in my ice packs when I went for chemo on Tuesday but I used them when I got home and they seemed to relieve some of the tingling in my fingertips. I told my onc about my increasing neuropathy. It's so difficult to measure how bad is bad and I am afraid I made him think that I'm worse than I am. He has decided to give me taxol once every three weeks as he wants me to get the most from this chemo (as it's working) but doesn't want to make the neuropathy worse. I am terrified this dose will not be enough to keep me stable.
I see you are on a similar dose, Latte, but that you are also on carboplatin. Has anyone else been on taxol solely, once every three weeks, and how long did it work for? How many weeks would i need to be on this regimen before a scan would show anything? I had a scan in July which showed things appeared to be stable...
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