Weekly Taxol group
Comments
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Hi Ladies, I been reading here for a while, but don't think I've posted before.
I had #2 AC on Friday, 12/28/12. I get them every third week, then 12 weekly taxols.
Have any of you had the 12 taxols as opposed to 4? Is it easier getting it in more treatments? I can ask my onc next time I see her, but I thought some of you might know the answer.
Blessings
Paula0 -
Paula, I think most of us posting here got 12 weekly taxols. From what I've read there are far fewer side effects from the weekly treatments as opposed to every other week or every 3 weeks. It means a lot of trips for treatment (and I did cold caps to keep my hair, so it was a lot of cold caps!) but for me it was definitely worth it because I felt great most ofnthe time. I didn't have AC but others have said the weekly taxol is much easier than AC. Good luck to you!
Pinky, interesting about the capsules vs. Powder. My MO didn't say anything about capsules but gave me some sample packets of Glutasolve to try. It was gross so that's why I found and used the capsules for a while. I ended up buying l-glutamine powder at GNC which didn't seem quite as sandy as the Glutasolve.0 -
Pat~Thank you for responding to my question. That's the answer that I was hoping for.
I had been hoping though, as some have said, that hair might start growing back during taxol. Not true? Sometimes?
Blessings
Paula0 -
Oh yeah my hair did grow on taxol, but am starting to lose some. Gonna stop the hair, nail and skin pills to see if it's that or chemo making it fall...
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Paula, the hair thing on weekly taxol is variable, from what I can gather. On the September chemo board one woman who had 12 weekly taxols said she did not lose her hair. Another lost all her hair and says she is still bald after completing the 12. I have read that others who had AC or some other chemo cocktail first did start regrowing some hair while on weekly taxol. Hopefully others can chime in here with their experiences.
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Good luck on the surgery , Mareluna.
I lost my hair from A/C treatments all the way to my taxol tx. Eyebrows and eyelashes dropped during Taxol tx. Its not an easy ride but symptoms are more tolerable than A/C protocol.
2 more taxols to go !!!!
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Yayyyyyy Pixienel!!!! I am sure you are ready to be done!
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I lost my hair (everywhere) during the A/C regimen. Now I'm doing 12 weeks of weekly Taxol/Herceptin and it's starting to grow back. Only have 2 more to go!!!! Wahoo!!!! Then I'm onto 6 weeks of daily radiation ... sigh ... but I hear that radiation is much easier than chemo. Thank you God! Taxol is MUCH easier than A/C ... true it has its own set of ugly side effects, but all in all I found them easier than A/C
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Katharine~Thanks for your reply. That's what I was hoping to hear, even though I know we all react differently.
I cut my long hair the night before first AC. Got two 12" ponytails for Locks Of Love. Then the day before 2nd treatment my son gave me a buzz. I'm ok with that.
After my next 2 ACs which are every third week, I move on to 12 weekly taxol, then 6 weeks of rads.
Blessings
Paula0 -
Hi everyone,
I got my hair cut, not that it needed it on NYE. at least it might grow in a shape now. I also got a much needed pedicure. My feet were a mess. I can't see well enough and the neuropathy makes me leary of cutting nails and stuff. My feet were jumping as Jackie was working on them. LOL
I saw the PS today. I had questions about surgery. My mastectomy and reconstruction is about 5 weeks away. Was glad to not have chemo any more.Seemed odd in a way.
Have a good one...
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You can do it Paula!!!! I have chemo tomorrow morning and then my last one is January 10!!!! Hard to believe I've gone thru six months of it. It goes by faster than you think. Take it one day at a time and don't be afraid to ask for pain Meds. Sleep when your body tells you too and eat as much protein as you can. I was told 100 mg a day, never managed to do that but I did eat more of it. Also keep a positive attitude! It really helps. Sometes it's hard when you feel like crap but that's when I turned on some music or my hubby made me laugh. You will not only survive but thrive!!!! You can do this!!!!
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Paula,
You can do it!!! I did not think I could do 12 weeklies but it flew by. It really did. I found it easier tha the AC. I even grew hair. Was able to get in many good days. Hang in there!
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Mareluna, did you have any days during taxol that you could taste anything? I figure with having them weekly, I can just kiss my tastebuds goodbye for a while.
One would think you'd lose weight while on treatment, but I honestly think I'd be so desperately looking for SOMETHING I can taste, that I'd gain instead. Believe me, I can't afford to gain an ounce.
I was in such an AC fog yesterday. I think maybe I didn't get enough fluids to flush the toxins. Hoping today is better. Though, all in all, my SEs haven't been too bad.
Blessings
Paula0 -
Good thing about taxol. Not so much chemo fog. Taste buds are shot. They come n go but mostly gone. Finished 7. It does go by quickly and much more manageable than ac. You can do it! We are so strong!
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Paula, I did not lose taste at all on taxol - everyone reacts differently, but it's not a given that you won't be able to taste stuff. Unfortunately I did gain weight - about 12 pounds - that I really need to lose now!
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I started Taxol october 10th, taste buds went right after Thanksgiving. What I really like to eat is cinnamin cream of wheat. That tastes good. I am finding that some vegetables are good. I normally hate tomatoes but like that now. Salads I never liked much are ok. I started weight watchers yesterday. I have gained on taxol. Uhm I used to love sweets but don't like that now, nor bread products unless it is cinnamin raisen bread. Hoping to get some taste buds back.
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Knowing that it is different for all of us, what advice can you give a newbie starting weekly Taxol a week from today.
I finished dose dense AC last Thursday and almost feel like the fog is lifting. I am more than happy to have the first phase of chemo over with!
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Politico mama, congrats on finishing AC. My advice to you would be - be ready to do something to counteract neuropathy. It doesn't affect everyone, but if you start getting tingling or numbness in your hands or feet, talk to your MO or chemo nurse. I took 100 mg of vitamin B6 daily, and I took 30 grams of l-glutamine on the day of infusion and 3 days after. This seemed to work for me. The l-glutamine is gritty and doesn't really dissolve; I tried mixing it in various things and ended up with Crystal Lite iced tea with lemon as the most tolerable.
I don't know if you get steroids with AC - no one warned me about the facial flushing and it worried me that first week. It lasted one day each week, and just made me look more healthy.
Also, bloody nose-blows are normal on taxol. It came on for me after a few weeks. Seems like my nose was stuffed up more than usual too, although it's hard for me to tell because I have allergies. And maybe it was the Herceptin. Have plenty of soft tissues on hand.
I would also suggest that you have on hand some remedies for diarrhea and constipation - I had both at various times. mostly constipation, but as the nurse said to me, it's a fine line between the two. I think the Senokot pills worked best for me for C, and Immodium for D.
WIth all that, I was able to work all during taxol, and felt pretty good most of the time. Here's hoping you will sail through taxol!0 -
Hi Politico mamma.
I got the nose bleeds too. No real bleeding unless i blow it or in the shower it would loosen up. I bought AYR nose gel and found it made my nose feel better.
I was not allowed to take L Glutamine. I took B complex. I have the neuropathy. No issues with constipation or runs for me.
I had to take 10 dex pills prior to first one. Since I did not have a problem no more of those prior. I took an ativan an hour before chemo. I hated port accesses. That would take edge off. Then the benedryl they gave I'd be dozing kind of. My legs would get restless after benedryl. Get home use a suppository for nausea. Never got sick. I'd take a 3 hour nap and get up and eat a light supper.
I hope all goes well for you.
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Have one more taxol/herceptin and I'm off to radiation. For me I never got a lot of neuropathy, but my finger nails hurt and they turned yellowish-brown. i just throw polish on them. fingers don't tingle. Just hurt. Also have a little bone pain in legs and back. Other than that its been much easier than a/c was. I work in the mornings (own my own biz) and switch to a laptop on my couch in the afternoons so I can put my feet up. No nausea but I do have constipation. I take three colace before bed and milk of magnesia as needed. I also eat fruit and fiber rich food every day to combat it. Hair started to Grow back second week in. Have a Few eyelashes too! Sooo cool. Hair is pure white but I don't care. It's hair!!!!! Lol. Will dye it when docs tell me I can. Gained five pounds from steroids but I needed the weight as the cancer had made me much too thin. I took up running last year and thought the weight loss was from that but apparently not. I actually look much healthier now due to face flush and added weight. Stay positive you can do this!!!
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I will be starting weekly Taxol soon (tentatively 1/24) and am so glad I found this group. I see a couple of fellow October 2012 Surgery members found there way here also (hello soteria205 and politicomama).
I was really getting scared about weekly treatments because I am having such a hard time with AC every two weeks and still have one more to go on Thursday. It seems I bearly get over the SE's before I have to start again, so I couldn not imagine what it was going to be like with weekly treatments. But the posts I've read are encouraging that it is better than AC.
Several have memtioned issues with steroids. I have not had the issue with being wired or awake (my MO told me I probably would, but hasn't happened yet). I am getting both through IV on treatment day and at home for nausea. I have gained weight. But within a few minutes after starting the IV, my head starts feeling really weird dizzy and it pretty much stays that way for days. Anyone else have anything like that?
AC has affected my taste buds. I had my son pick up some Mexican yesterday hoping for some flavor, but the only way I knew the jalepenos were hot was because they burned the couple of mouth sores I have. Like someone else said probably some of my weight gain is from just eating to find something that tastes good and also to cover the bad taste I seem to have in my mouth most of the time.
Thanks for the encouraging posts in this thread.
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mareluna -- I noticed you have posted ER- and HER2-. Are you also PR-? Very common for BRCA people to be triple negative. If so, you might want to check out the Calling all TNS group (in Triple Negative Forum). Great support group. Don't try reading everything from the beginning though as I think it's over 650 pages.
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Oh no!!! Do they usually give steroids with taxol also? I think most of my problems with AC have been the coming down off the steroids.
My last AC won't be until Feb 8. So, I imagine there will be a 2 or 3 week break before taxol, which would start me on about March1.
I know some people get 4 taxol treatments, some 6, and some 12. Does anyone know how that's decided? I'll be getting 12.
Blessings
Paula0 -
My onc said that if I did taxol in 4 rounds life would suck. So I said give me 12. She said i'd do great on the 12, much easier.
Thanks about the triple neg. group...
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Mareluna~thanks for the good news about the 12 as opposed to 4 treatments. That's the news I was hoping for.
I asked my onc why I'm getting AC every third week as opposed to every second. She said, it gives me an extra week to recover plus it lowers the risk of leukemia down the road.
I had wondered, and then found out, it was indeed, AC that caused Robin Roberts of Good Morning America to have pre-leukemia. She had dose dense AC in 2007. She just celebrated her 100 days post bone marrow transplant. That means she's basically out of danger of rejecting it.
Hi Shirley!
Blessings
Paula0 -
Hello ladies - I am new to this thread. I am doing AC every two weeks now - one left on Jan 16 and then it is on to weekly taxol for me. Actually - I have the choice of every 2 weeks for 8 weeks or every week for 12 - and I am leaning towards weekly for 12. It is encouraging and useful to read through all of your posts - you are all so brave and strong.
I am now trying to decide what day to do my taxol to minimize the amount of work I miss. I don't really understand how the SE timing compares with the AC SE's. For the AC - I have been doing a Wednesday - and Friday by FAR my worst day. And Saturday not far behind. I am wondering if I should switch the taxol to Friday's and hopefully be OK by MOnday for work? Also - it is easier for me to get help with my kids on the weekends - so it works out best all around if I am my "sickest" on the weekends. Can any of you share your timing on the SE's with me??
Well - I hope everyone is doing OK and that no one is suffering too badly out there - you are a strong bunch of women.
Mia
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I go on Thursdays. Feel great Friday. Ok Saturday. Sunday not so hot. Better Monday. Good. Tues n Wed. Hope that helps!
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Mfml, I finished Taxol on 12/13/12 and like Timbek2, had my treatments on Thursdays. Friday was steroid high, no sleep Thursday night and then Saturday and Sunday were my down days. Everyone is different though. Best of luck to you!
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Soteria,
Google "Taxol trials one week", etc. There was a trial that showed weekly treatments are better by a tiny result which may have been chance. I think but don't know that the actual amount given is about the same, just divided differently. I think there were slightly more SE with the bigger dozes, but then the inconvenience of so many treatments. Just finished 5.
Funny thing. Except for frustration with long waits in the waiting room before treatments (gave Oncologist complaint letter Wed), Taxol is easier. Usually feel fine--no aches, pains, or nausea on treatment day and two days afterwards. Then increasing joint aches in shoulders, neck, hips. Tire easily but not nearly as bad as A/C where I felt covered with concrete crust about 3 and 1/2 days. No mouth sores yet, but keep ice or Popsicles in mouth during Taxol most times. Bloody crust in nose, dry mouth and dry eyes. Some diarrhea, minor constipation. Anxious for this to be over--then 4 week break, then 7 weeks rads, 5 days a week. I think this is pretty standard.
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Cindi~Thanks for all the info. I keep hearing that taxol is easier than AC. I'm praying that its that way for me.
I've heard at using saline rinse in the nose helps with he dryness and.
Yes, I have those long waiting room waits too. My appointment last week was at 10:40 and I didn't even get Bloodwork until noon, then another 40 minutes or so to see the onc. That all takes longer than infusion does. One more thing for BC patients to put up with.
At least the team is very friendly and efficient where I go.
Blessings
Paula0
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