Weekly Taxol group
Comments
-
Kelly, I would take it for 3 to 4 more weeks. I ran out 4 days after my last taxol, and didn't want to buy any more - ended up getting a numb big toe about two weeks later. The toe was a problem for many months, and still isn't quite right
0 -
Hi ladies I'm new to this forum...
I've read a couple of you are finished with taxol and moving into the red devil AC...I completed 4 rounds of DD every 14 days, I'm so god I completed that first. For me it was much tougher than the taxol..but remember everyone responds differently and YOU WILL GET THRU IT! Remember to drink a ton of fluids to help push it they your system. My onc prescribed me Akenzeyo for nausea, it lasted 5 days and was a godsend...something worth looking into. Tomorrow I'll be getting my 6th treatment of taxol (I'm halfway home) but so happy to have found this thread to help me get thru.
My hair is a light peach fuzz (woo hoo) but my head sweats profusely at night regardless of how cool my room is...anyone else out there suffer from this? Good luck to all of my warrior sisters out there
0 -
Hi all - Starting my first of 12 weekly Taxol ( and Herceptin) tomorrow. I feel prepared, thanks to these boards. In fact, I am not sure I learned much more from the chemo class. I had a port put in last week.
I read a lot about the side effects after treatments, but they are mainly for the every three week protocol. I know everyone is different but I am trying to get an idea of some sort of "schedule" of possible/probable side effects for the weekly protocol.
Will the possible/probable side effects hit me after the first treatment, or perhaps not until the second or third treatment? I have a box of OTC/Rx meds ready.
I am prepared for hair loss ( or significant thinning) and honestly that is not an issue for me. I have a few hats/wraps and purchased a wig. I decided to cut my shoulder length hair into some short style. I don't have a have a hair cut scheduled until a few days after the second treatment. Could I experience "hair release" - as they called it at the wig place - prior to then? I'll see how it goes, and if the hair loss is significant, I'll just get it all shaved off. Again - not an issue for me. I am more concerned about the side effects that may cause me discomfort.
Best wishes to everyone
M
0 -
MLMSC: I finished my 12 weekly taxol about 3 weeks ago, had my first A/C last week. I had finger pain the first week, dryness and body aches/fluish feeling the first week too. Headaches like I had been @the beach all day, when your eyes are sore from too much sun. The reflux & gas started quickly too. If you take morning and eve zantac that helps the reflux. L-glutamine helps the neuropathy, I wished I started it the first week. Consider icing your feet and hands during taxol infusion, that helps too. Drink, drink, drink some more, that helps a LOT. blessings, A
0 -
lmkopy2: I go for my 6th taxol on Wednesday so I guess I am right behind you. I have the night sweats also. It drives me crazy. Mostly my head. Doesn't seem to be anything I can do about it though. Just keep going...
0 -
Welcome to the new sisters in the Taxol group: Sara178, Imkopy2, and MLMSC.
MLMSC: For me, Taxol side effects did hit the first week but were minimal - mainly a little numbness in one big toe, dry mouth and nose. As each round has come around, the neuropathy gets a little worse but is still bearable; it now is affecting my hands more and it kind of feels like my fingers are on fire, but fortunately that feeling comes and goes. I am neither icing nor taking any supplements like glutamine or alpha lipoic acid. From what I have read, these 2 supplements are actually quite effective for neuropathy so you may want to consider. I am stopping my at local health foods store today to ask about them both. Pretty major heartburn and some issues with multiple loose bowel movements (sorry) kicked in after the 2nd round; for me, one Zantac at bed time is serving me well for the heart burn, and keeping up on my fiber intake - oatmeal, multigrain bread, lots of veggies - has helped with the regularity (or irregularity?) problem. After the steroids wear off (I get my infusions on Wednesdays), for the 4th and 5th rounds on Friday and much of Saturday, I have felt kind of like I have the flu combined with a severe hangover, but fortunately that also wears off by Sunday for the most part.
Sara179: I'm with the others who have responded as far as getting a 2nd opinion - definitely do it! As far as a port, I''m all in favor of it. It will save you numerous needle sticks, help preserve your veins for if you need them in the future, and f you have a phobia of needles all the more reason to get a port. The chemo option presented to you seems pretty standard. As far as radiation, at least in my area, radiation is considered standard of care if you did not have a complete mastectomy. I'd love to discuss that question with Dana Farber experts, katjadvm, since you suggest they no longer recommend for node negative.
I get round #6 this Wednesday - half way there and then in the home stretch, at least for taxol - yay.
Hugs to you all weather you are a newbie, veteran or middle of the roader. (( ❤️ ))
0 -
Just finished round 7 of taxol....5 more treatments, I can see the light getting a little brighter! Hope everyone has a healthy week!
0 -
Hi everyone!
I am new to this thread and am so thankful this board is here. I will get my 6th Taxol infusion tomorrow... Some slight neuropathy "pings" in toes, mostly, and some fatigue but overall SE have been not bad.
How much glutamine are some of you taking? I take about 4000 mg, 2000 2x a day. I also ice before and during infusions.
Wishing you all healing and strength.
0 -
jojobird - the dosage of glutamine that was recommended to me, and which I believe is pretty standard for prevention of neuropathy, was 30 grams per day. That would be 30,000 mg - a lot more than you're taking. I split it into 2X per day, and the 15 gram dosage worked out to a heaping tablespoon of the powder.
0 -
Thank you, Pati! I will need to order some powder ASAP.
0 -
Jojobird: I take 10 grams three times daily of the seeking health brand from amazon. Highly recommend glutamine!!!!
Roof cat: To clarify. I am having a mastectomy (flopectomy really) and Dana Farber said they will only recommend radiation if I still have lymph node involvement after my neoadjuvant chemo. Just want to make sure I did not misrepresent.
On a side note, boy am I sick of taking pills!!!!!
0 -
Sara179: You may also want to check in with the Triple Positive group on this site. There are some very experienced ladies there who are many years out of treatment but who still contribute regularly. Second opinions are always good, too; I got one, and when it agreed with the recommended treatment plan my own MO had suggested, I felt a lot better and more confident starting my chemo regime. Best of luck!
0 -
It's been a crazy busy week, and I haven't been able to check in.
Had to cancel my infusion yesterday as I felt like I was fighting off a cold or something. Light headed. Shaky. Just general feeling of "yuck". Came home with some Claritin and a Z-Pack in the event that my symptoms worsened over the holiday weekend when my pharmacy is closed. Went right to bed and felt markedly better after a 2 hour nap. Woke this morning feeling normal. Still some congestion, but nothing that's not manageable. Will spend the rest of the long weekend pampering myself and resting.
How is everyone doing?
0 -
katjadvm, how do I contact Dana Farber for questions? I would like to know about options for radiation. Thanks
0 -
Hi all, hope everyone is doing well. I have a question about L Glutamine and how often folks are taking it. My chemo nurses gave me an info sheet about it saying if you do weekly Taxol you take it for 5 days (starting on the Taxol day) only then take 2 days off. 10 g 3x a day. However, from these boards and my local support network I'm hearing every day. I was just wondering if anyone else had similar instructions or if the majority of you are doing it every day. I want to do the most I can to prevent neuropathy. I did my 2nd weekly Taxol on Thursday and that day developed a bit of numbness on the very tip of one of my fingers and that's it.
I have to say compared to the AC I am feeling great (although that's a relative term when it comes to all this treatment).
Thanks for any advice on this.
Lindsay
0 -
Lindzanne, my instructions were to take it 4 days per week, including chemo day. 30 grams per day. It did the trick for me
0 -
Fireheart, how are you doing today? I hope you can kick the cooties to the curb so you don't have to delay your treatment for long.
0 -
Lindzanne, glad to see you here! I'm on round 6 of Taxol and have just started the powder form of L Glutamine -- was taking a very small dose prior visiting this board and Katja and others recommended some powders. Love the information and support! I've been icing my hands and feet using the Elasto-gel gloves (hands) and regular ice bags/veggies for my feet (the Elasto gels are expensive - about 100$ a pair and I can't afford more). Also, I am running/walking 3 miles a day and eating pretty healthy. So far, I have very mild neuropathy in my feet - just the intermittent, mild "ping" of numbness but nothing major. My onc said that neuropathy symptoms tend to really kick in around the 6th-8th cycles of Taxols, so I am crossing my fingers that the symptoms don't get any worse.
Taxol is much "easier" than the AC in terms of fatigue and nausea. No nausea, some fatigue, but much more bearable. Hope everyone is hanging in there and enjoying the three day weekend!
0 -
Jojobird, do you find that the Elastogel gloves stay cold throughout the infusion? They are quite expensive and I certainly can't afford four to allow switching out midstream with one pair kept in a cooler. I hope your neuropathy doesn't worsen.
0 -
Houston: My MO sent a referral to Dana Farber and then they called me to schedule an appt with radiologist. We met the radiologist and now she will weigh in once my flopectomy is done and they evaluate my response to chemo. hope this helps.
0 -
Vlh, I do the "cheapskate" version of icing. I bring the Elasto gel gloves and two big bowls, plus plastic bags. The nurses fill the bowls with ice, and I place the plastic bags over the gloves and keep them immersed in the bowls. It stays cold and I don't have to switch the gloves.
On my feet I use medical ice bags (about 10 bucks a piece) and they stay icy for the infusion duration.
Icing is not fun! But I hope it helps. Wishing you all luck.
0 -
Hi All, next Wednesday will be my 7th treatment of weekly Paclitaxel, (3 in a row-1 off) So far side effects not too bad: fatigue,joint pain, thinning hair, flu like aches, weird tasting burps???, "wobbly" legs, sleeplessness from steroids, appetite ok, mild congestion, summer heat drives me crazy. I do have a question. Has anyone ever experienced pain in inner thigh groin area? It comes and goes and not too bad, but it is uncomfortable sometimes
Thanks, be kind to yourselves
Tsu
0 -
Hello tsu: what timing for your comment! Am having the same thing you mention in my right groin after having had #6 taxol (weekly regimen) this past Wednesday. Thought it was due to tight psoas muscle and not getting my usual yoga sessions in for quite a while. Have had hints of it in previous cycles but this time it's been pretty steady since steroids wore off. I will have to run it by my oncologist this Wednesday. I have had periodic problems with muscle cramps in my lower legs but so far nothing like this.
0 -
Fireheart: Hope you were able to fight off the cold or whatever it was you had and that you've had a restful weekend. Hope your chemo goes as scheduled for you next week. Take care!
0 -
Jojobird, where do you get the medical ice bags? Thanks!
0 -
VLH, Here's the link to the medical ice bags.
https://www.amazon.com/Mueller-Ice-Bag-Blue-Inch/d...=zg_bs_3763841_6
If the link doesn't work, you can google mueller ice bags. Good luck!
0 -
Thank you, Jojobird!
Lyn
0 -
Fireheart I hope you are feeling better!
Just finished round 8 of taxol is complete for me, Doctor says I'm dong good & gave me the go ahead to take Biotin...so excited! I'm hoping it helps to continue grieving my little peach fuzz.
Roofcat- I did have some leg aches and pain in my inner thigh...very strange but I walked early in the am before the sun came up while it was cool. Tried doing it at the end if the day but I was far too pooped! Walking certainly helped to loosen things up a bit. It also helped the neuropathy in my feet, but I always wear gym shoes to help keep my footing. Good luck!
0 -
I just finished #7 today. Five more...
0 -
woo hoo cris8325...you're one behind me, hope you're doing well!
0
