Weekly Taxol group
Comments
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Greetings ladies- great posts
I finished 4 AC and am in 2 of 4 Taxol.
My biggest challenge so far is neuopathy, numbness in my hands and feet. After #2 it has started to creep up my legs.... I don't want to stop chemo or delay chemo but it is getting painful to walk. Has anyone gone through this? I will endure anything to beat this cancer so I am just looking for advice.
Thanks ladies,
Shannon0 -
Bishops...
no need to endure more then you have to... have you shared this with your team?
I hate taking pills.. more drugs etc... but ya know... we dont need to suffer more then we have to...
i hope your pain goes away soon
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Shannon, talk to your doc/chemo nurses, but what helped me with neuropathy was l-glutamine and vitamin B6. 30 grams of l-glutamine per day and 100 mg of vitamin B6 per day. My chemo nurses gave me some packets of a brand of glutamine called Glutasolve to try, but I ended up buying a tub of l-glutamine at GNC. The recommendation is 15 grams (a heaping tablespoon) twice a day, mixed in liquid or something like yogurt. it doesn't really dissolve. If you google neuropathy from taxol you will find some studies showing this combo does help.
Politico mama, I'm surprised your doc would cut out the premeds altogether. I had no bad reactions, but they continued with the premeds for all 12 treatments. I did get the doc to cut my steroid dose in half, which helped me sleep better.0 -
I hear that there is a medication called Neurontin that might help with the neuropathy.
It might be worth mentioning to MO.
Peggy0 -
I will call my onc team shortly. I really appreciate the info and will definitely swing by gnc today.
Before cancer I thought people who gad beaten cancer were cancer survivors. Now I know they/we are chemo survivors.
Blessings ladies!0 -
I get treated at Ohio State and they said that was there standard protocol if you did not have a reaction. I was kind of surprised too, but will not miss the steriods if it goes as planned!
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Wendy, I had AC #3 at the Stephanie yesterday. While my nurse was pushing the AC I asked her some questions about taxol. She said they give pre-meds the first 2 tx, and if there's no reaction they don't give them anymore. Is that basically what you heard?
She also told me, I get like 15 units mgs of decadron with AC, but will get 50 with taxol. Now that's SCARY. All my SEs are from the steroids exiting the system.
I also mentioned you to my nurse, but only know you as Wendy. She said, if I mention some last names would you recognize it? I told her, no, I've never heard it. So protecting your privacy, no more was said. If you don't mind pm me your last name. Are you on Facebook. I'm on there as Paula Brumley ( Hendricks).
I do hope we meet before treatment is over.
Blessings
Paula0 -
My MO said Claritan works for pain also. I havent had to use it yet so this is word of mouth. He said there are not studies its just what his other patients have told him.
Big Hug for an easy road
Cathy0 -
Hi Paula - your post hit a cord! I too had more issues with the decadron that the a/c. My MO pushed 20mgs the first round and I was a disaster. I begged for him to reduce it and for my remaining 3 rounds I did 10mgs. It was much easier to manage. I started Taxol January 10th. MO wanted to bump up the decadron to 15mgs. I protested. He kept it at 10 and I had not side effects. The nurses watched me a little more closely but all went well. If you are having issues with the steroid, make sure you let them know! This is hard enough without the premeds causing more trouble.
Best of luck and a Hug for good measure.
Cathy0 -
Cathy~Thanks for sharing. When the nurse told me yesterday at AC #3 that they would bump up the decadron with taxol, I thought she said to 50 mgs. That put me in a panic. Now, after reading your post, I'm pretty sure she must have said 15.
I will ask them to decrease it.
I keep hearing and am hoping the SEs diminish with taxol.
Blessings
Paula0 -
HI Paula - I suffered A LOT with A/C. Taxol, so far, has been much easier. Its no "walk in the park" as my MO called it but nothing compared to A/C. I hope I'm not jinxing myself as thursday is coming up fast and that will be round 2 of taxol. The main complaint I have with this drug is the restless leg syndrome it has caused. The first 3 days after treatment, the nerves in my legs were crazy. I have also developed some pain in my nail beds but like I said, it is not as bad as A/C. I hope your treatment is an easy one.
((((hug))))
Cathy0 -
Soteria, your mo probably did say 50 for the steroid. I started out at 50 and when my MO agreed to cut it in half I went to 25. I had no problems at 25.
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To everyone new to Taxol or about to start,
I haven't posted in a few months, but want to encourage all of you! I completed Taxol treatment 8 of 12 yesterday. I was very nervous the first two treatments because I didn't respond well to my four A/C. I did okay, but was pretty much in bed for the first 4-5 days of the A/C. However, the Taxol has been much easier!
I get very loopy on the Benadryl, so I try to have someone come with me or drive me to and from treatment. The first time, the nurse gave me the Benadryl over 15 minutes. I felt like I was drunk. Now she gives it to me over 30 minutes and that helps a lot. I still get very sleey and often feel like I'm about to go under anesthesia. I try to sleep and sometimes I'm able and other times not. I have also never had a reaction.
I usually take a nap when I come home and like a lot of ladies have said, I don't sleep well the first two nights. I've been taking Ativan when I wake up in the middle of the night and that does help me to fall back to sleep. Last night I was awake for about an hour waiting for the Ativan to kick in and once it did, I was able to sleep another three hours.
My toenails initially turned white in small areas. The white areas are about to grow out, so I should have clean nails soon. No problems with my fingernails.
My hair started to grow back about 5-6 weeks after the A/C was over. It started to grow about mid-December and I now have about 3/8 inch of hair. I am hoping it will grow a 1/2 inch a month like I've read so I can stop wearing my wig by May. My hair grew in white at first, but is now dark brunette with a few white spots at the temples. I'm hoping the white completely goes away because I'm used to coloring my hair. From what I read, I should not color my hair for 6 months lest I take the chance to look like Bozo the clown!
About the time I started Taxol, I noticed my eyelashes and eyebrows were patchy. My eyelashes seemed short, so I don't know if they broke off or if they were growing in. I usually wear eye makeup, so I don't remember not having eyelashes except in a couple of spots. It seems that maybe they broke off. Now they are back to normal! My eyebrows are still patchy, but they are growing back.
I do experience tingling at times, but the L-Glutamine seems to help that. No neuropathy in the hands or feet...yet.
My main side effect is fatigue. I try to get more rest than I usually do and if I am successful, life seems so much better. If I get too tired, I will cry. I don't if others have experienced this, but some survivors I've talked to say they have done the same thing. It could be the "going through menopause thing" or it could be that I lost my "dog of a lifetime" to cancer on December 2 and am still grieving. When it rains, it pours.
I have not gained weight from the steroids. I've been doing Weight Watchers for a year and have successfully maintained my weight the last couple of months. I do gain a couple of pounds right after treatment, but about four days later the extra pounds disappear. I think it is probably water gain from the steroids. I try to watch what I eat and not overdo the stress eating (yes, I ate four snack size bags of M & Ms during chemo yesterday!).
I hope this encourages all of you new to Taxol. It is very doable, but I can't wait for it to be over. After that I have 33 treatments of radiation.
I wish you all the best!
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Paula, they pushed 20mg of steroids on me Thursday with my first Taxol, made my heart race and my hind end burn! With that being said my husband and I were just discussing that I have not been a lunatic this time! Hope that brings you so hope. Other than my mil being here driving me nuts today I feel great. They told me the same thing about discontinuing all premeds.
My nurses so far have been Joanie, Michelle, a young girl, younger than me who had just gotten married, and I honestly can't remember the name of Thursday's, she wasn't my favorite though because she didn't tell me when she started pushing stuff.
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Politicomama~Thanks for friending me on FaceBook. My nurses have been Dottie the first 2 infusions, and yesterday I had Lindsey. I liked them both.
I wonder if the different oncs have their own infusion nurses? I was only there 15 minutes yesterday before they did Bloodwork, and wonder of wonders they put me right into a room and nurses came right in. I was done by 2:40.
Last time I waited an hour & 40 minutes to Bloodwork, then went back to the lobby to wait almost another hour to see he onc.
Keep me posted as your week goes by after this taxol.
Blessings
Paula0 -
i am on day 5 of #5 Taxol..
the worst SE..is this damn headache , and the fatigue.
I feel like im wearing a tight cap... and no matter the meds, it just wont go away...
its always there... though the intensity alters somewhat, but i just think thats me doing better at ignoring it...
ugg...
other then ice packs.. nothing helps
anyone else with this SE? or any suggestions?
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During AC I had the headaches. I had to take a pain pill. That was the only way to get rid of it.
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ive taken tylenol with codein...nothing
advil... nothing...
i think im going to go crazy now... lol
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I had a sinus type headache with my first 2 ACs. This time the nurse ran Adriamiacin and cytoxan about 30 minutest slower. This is day #3 and I've had not a trace of a headache.
Maybe next tx, ask the nurse to slow it down. See if that helps.
Blessings
Paula0 -
Celine - are you drinking enough water? I know the taxol is very drying and that might have a headache connection.
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I second the water suggestion. It sounds simple but I only drink water the day before, during and after infusions- as much as I can and it really helps with the chemical headache.
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thx ladies...
i drink loads of water.. i get chronic kidney stones so i drink between 2 and 4 liters a day
ice is my only relief...and then its just temporary...sigh
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Hello Ladies - I'm a 33 year old soon to be recipient of weekly Taxol with Herceptin. Needless to say, I am freaking out... I haven't looked into a wig as of yet but I am reading that with the TH combo, I may not lose my hair. Did any of you ladies find this to be true? I am also curious if I should be looking into a port considering I will be getting stuck every week. I will also be working with a naturopathic doctor receiving high dose vitamin C and IV Nutrients. I am hoping this will help with the side effects *sigh* I will be taking the first week off of work to see how my body will handle this.
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Hi Macho,
I am sure your medical oncologist will give you the info on needing a port. I was told I had to have one. I was told that chemo would blow my veins out otherwise. I hadv4 AC and then 12 weekly taxols. Good luck to you.
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Macho, we are the same age
I think ports vary from place to place, doctor to doctor. I had mine placed when I had my BMX, but I told my surgeon I wanted as little surgery as possible. This was at my local hospital. I get treated about 45 minutes away, and they make you do it as a separate procedure there. I did AC first so I can't comment on the hair, but I have noticed that I have some growing in on my neck and I have only done one week of Taxol thus far. I teach from home, but I have worked, cared for the kids and the house all while going through chemo. This first Taxol has given me a few aches and pains, but nothing that would stop me from my normal activities. You can do this!0 -
I turned 33 last week. Our lucky number, eh?
I am a big fan of my port. I sit in chemo and watch others get stuck over and over to find good veins. I got mine during my node surgery and I forget about it now.
Just my two sense but I can't imagine chemo without it.
Be blessed!0 -
macho mouse, I had 12 weekly taxol and Herceptin and now am getting Herceptin alone every 3 weeks until sometime next September. My oncologist recommended a port, just because of the frequency of infusions. I don't think taxol is quite as toxic to the veins as some chemo drugs, but I'm glad I have the port.
As for hair loss, I do wish there was more info out there about hair loss with weekly taxol. My onc told me I would definitely lose my hair. However, from what I could find, hair loss is not a guarantee with the weekly dose (as it is with bi-weekly or tri-weekly). I used cold caps to be sure of saving my hair, and I essentially lost no hair on my head. There were 2 other women on the September chemo board who had weekly taxol only (or first). One kept her hair throughout taxol, and one lost every hair on her head. I lost my leg hair and pubic hair, and my eyelashes are now going, so I think I would have lost the hair on my head without cold caps.
I'm so sorry you have to go through this at such a young age - it's just not fair!0 -
I like hearing about everyone's cold caps. I was talking with my nurse and she was saying they were the standard of care in the early 80's when she started. I get treated at Ohio State, and while they will let you they don't promote them. Financially it wasn't doable for us anyway!
Who has had some aches from weekly Taxol?
I just did my first one last Thursday, and was achey and sleepy yesterday. Completely doable, but just curious?
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Hi ladies, I haven't posted much here, but wish I could hug you all for being so generous and helpful! I have a question: looks like I will be starting weekly Taxol on Friday after I expressed my reluctance to do Taxotere for fear of permanent hair loss. So I asked one of the nurses in the chemo room about how they go about icing the fingers and toes and she told me no, no, not with Taxol, that's only for Taxotere. Hello! A quick google search turned up plenty of examples of icing with Taxol. What about you ladies? Anyone NOT ice their fingers and toes with weekly Taxol? Anyone encountered the answer I did in a Canadian hospital? Thanks for whatever you can tell me!
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I am doing weekly taxol and have not iced. I will have the eleventh this week. My toes are fine. I've taken b6 the whole time. My fingers are sore n numb but that's about it. Only one nail looking red underneath. Just my experience. Best of luck to you. Side effects are manageable.
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