Weekly Taxol group
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Hi Debbie,
Do you know how low your neutrophils are? I had low neutrophils all the way. My MO had a very relaxed approach and as long as I was above .5. Are they going to give you the shot to produce neutrophils?
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Good evening. I am starting to get dry nasal passages after 6 Taxol treatments. My MO said to use nasal saline, so I'll pick some up tomorrow, but just wondered if anyone had any other suggestions? Thank you.
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hi Swimgal-
Oddly ( or maybe not so odd) the nose stuff was the hardest part for me. When my nose dried up I started getting bloody noses. They weren’t gushers ,but they were every day. I started keeping a navy blue cloth hanky on me at all times so it wouldn’t look like a bloodbath if I was out at the store.
What helped as long as I remembered every night was to put Vaseline inside my nose before going to bed. I used a q tip.
My lips got very dry at the same time. I used the Vaseline on my lips too. Hope this helps. So sorry for all of the discomforts people are having. You are all warriors!
Xo
Claire
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I had my first Taxol yesterday afternoon. I think I did great other than I forgot to take my steroids ahead of time for it. They just gave me an extra dose before my chemo and other than feeling like I was exhausted and buzzed at the same time, thank you Benadryl and dexamethasone, I was fine. No tummy upsets so far. I've been taking Colace every day since AC due to constipation issues and that has helped. I'm also really working on drinking my water to get the chemo and the steroids on through my system.
Glad that all that anxiety was for nothing. And it's the first of 12, but one down, 11 to go! I'm so very thankful and grateful for this group. You have no idea how much I appreciate being able to read about other's experiences and to ask questions.
Let's keep keeping on! We can and we will do this! Doesn't mean we have to like it, but we will get through. I'm trying to remind myself daily that the only thing I have control of through this is my attitude towards life. I found a cute little journal off of Amazon and it requires me to list 3 things I'm grateful for each day. Some days it's breathing, but it's a great reminder.
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Claire1973, Thank you for that info! Hopefully I can head off the nosebleeds at the pass
.KotchAJ, yay on having your first Taxol behind you! Hopefully the rest go smoothly for you with miminal SE. I love your gratitude journal idea. I don't journal, but I do count my blessings every day. It helps me keep things in perspective about how much I do have to be grateful for.
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I had my seventh blood draw last Tuesday for my Taxol on Thursday and had an allergic reaction to the bandaid they put on for the blood draw. I have never had a reaction to bandaids before. It is still red today, five days later. I told them on Thursday about this and they used medical tape on my port after treatment, but I still had a slight reddening from that, which hadn't happened on the six prior treatments. Has anyone experienced this? Is it due to my skin becoming more sensitive from the Taxol? I've been very diligent about moisturizing my skin. Thanks for any feedback!
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Hi Swimgal,
I have somewhat sensitive skin....not crazy sensitive. I also have a port. They were using the standard Tegaderm adhesive dressing over my port since the very beginning. On the 10th one, I started having an itch attack under the Tegaderm, and they had to stop the infusion and change out the dressing to the IV 3000 dressing (it has orange and white packaging). For my Herceptin every three weeks, I request the IV 3000 dressing now and have not had an issue. For me, they said probably just having the adhesive pull on my skin in exactly the same place weekly for so many weeks finally made that area sensitive to the dressing.
I have also always asked for paper tape and gauze in the place of a hospital bandaid. Their bandaids have always made my skin red after use....The redness lasts about 3-6 days for me. Put Vaseline on the irritated area, and it should heal faster.
Also--my heart goes out to you right not. I felt like all of my awesome supporters were so excited when I hit the "halfway" point. I still felt like I had a ways to go. The 7, 8 and 9 felt like a grind...then when I only had 3 left I felt so so celebratory each week. You're close!
xoxox. Claire
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swimgal, I had the same reaction after 9th infusion. My mo wasn't concerned. That part has still some discoloration but it is getting lighter
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claire1973, thank you for your input. So far I have not had any reaction to the dressing they put over the port during infusion and hopefully that doesn't change. I will definitely ask for the paper tape from now on instead of a bandaid or regular medical tape. I'll give the Vaseline a try. You're so sweet - I appreciate your encouraging words! Being more than halfway was a mental accomplishment for sure. Tortoise-ing along
.Aram, thanks for your info. It just seemed like a long time for it to still be red, so it's comforting to know it's not unusual.
Enjoy the rest of your long weekend, ladies!
Blessings to all
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Day after second Taxol. I've had my treatments scheduled in the afternoon all through AC and my first Taxol. This one was first thing in the morning at 8. I then went into work for the rest of the day. Not a good combination. I felt tired/wired all day and couldn't focus well. When I was leaving I saw that they again had me scheduled for another 8 am treatment. I asked them to please reschedule me for later so they moved me to 11:45 for doc and 12:15 for chemo. My infusion is two hours so that only leaves me having to go back to work for 2 hours instead of 6. lol I'm learning with each one what I can and cannot do physically and mentally. I'm still viewing this as an ongoing science experiment. It seems each week brings a different reaction, side effect. Not all painful or uncomfortable, just different.
I did ask my onc to go over my plan again with me. 12 weeks of Taxol then surgery, then radiation. I was apparently blocking out the whole radiation part so it was good to hear that reminder that it's coming. Anyone else seem to have some selective hearing with all of the information we are given. Each time I hear a bit more. I think when my mind is ready I can absorb it then.
So, here's to another big black X on my calendar and another week in the books!
And to a short work week
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I had my first chemo yesterday and so glad to now know what to expect. Herceptin first and then the Taxol. I did not have any reaction to either of these while in the clinic. I woke up around 3:00 am this morning with a slight headache. I decided I had enough of having drugs in me to decided to try mediation to fall back to sleep and it worked! No nausea today, however around noon I started get have flushed cheeks. I called the nurse and she thought it might be a reaction to the Taxol, but was not concerned. Not a lot of energy today but up and about. If I recall these drugs build each week, so does that mean reactions to the meds can occur? and what should I expect? Thanks for any help on what to expect going forward.
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KotchAJ, I hope you get a better schedule for next ones.
Cactushouse, Herceptin adverse reactions usually happens the first time. For Taxol, adverse reactions usually happens during first two. For other side effects, Herceotin might affect your heart and you will be monitored. Taxol side effects are accumulative as well. So you might get skin issues or mouth sores or fatigue. But nausea is not a common side effect for Taxol even in the last weeks. Good luck.
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Hello Sissydi,
Thanks for starting this group. I start chemo on Tuesday 9/14/21. It will be Taxotere and Cytoxin, but is every three weeks. It appears that Taxotere and Taxol are both of the taxane family, so I hope I have the right group.
Is anyone else getting their chemo every three weeks?
ME
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meandjax, re 3 week schedule
Yes, I opted to get Taxol every three weeks as the AC on the two week schedule did not give me enough recovery time especially towards the last #4. (I’m 74) I did get through it though and took 4 weeks off before starting taxol. I just needed a little extra time to get my body and mind set for the second phase.
If I tolerate the taxol well enough I may revert to a two week schedule just to get it over. I had first taxol last Tuesday and had a lot of bone pain yesterday (day 2) but not the heavy fatigue and nausea I had with the AC. It’s Friday and although last night was pretty tough it may be subsiding a little with the ibuprofen this morning.
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Hi Debbiek345,
Thankfully my neutrophils were ok every time. I finished 4 AC and 11 x taxol. Last taxol is next week - I can't wait!
I usually get an injection of Neupogen or Filgrastim after every chemo, which are supposed to boost the neutrophils. Have you received such an injection?
Take care, everyone.
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day3 (night) after taxol was rough. Bone pain in hips and pins and needles in both feet. Ibuprofen was not cutting it. Found some meloxicam from when I had pinched nerve in my spine that worked better.. It’s another NSAID but stronger. Day 4 is better but legs and feet are still stiff and feels like inflammation. I don’t know if it’s the neulasta or the taxol or both but should subside based on my reading. I thought I would breeze through the taxol, but no. Still, easier than AC.
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ice boots. I have numbness in my feet and tingling still. Has anyone tried the ice boots to minimize neuropathy
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Dicon, I’m doing ice booties and ice mittens during taxol. So far (3 of four infusions in), I have no neuropathy in my feet, and just a little numbness in my fingertips. Sort of like there is a layer of tape over my fingertips. My infusions are 3 hr long so I swap the ice packs out every 45 min or so.
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Dicon, I have been doing the cold gloves and socks from the beginning of my Taxol (9 of 12 done) and I have had no neuropathy in feet or hands. I definitely recommend!
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Hi Dicon,
I also had some pretty severe neuropathy after the first infusion. People here have recommended L-glutamine, supplemented 30g per day (yes, grams - seems like a lot; I divide it up 3x per day, 10 g each) in a protein drink. I read an article that indicated that solid tumors are very glutamine hungry and deplete the body of glutamine, as well as the natural killer cells (one of the ways they trick our immune systems). That, along with ice gloves and socks 15 min before the taxol, all through the taxol, and for 15 to 30 min after the taxol seems to be helping quite a bit. Moth told me to ice until it hurts, and that is what I'm doing. I'm getting my 4th infusion on Wed, and so far, not nearly as bad as the first week.
Best to you; chemo sucks, in my opinion, and may we all just get through this and out the other side.
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Good morning,
I'm starting my first of 12 taxol infusion and every three week Herceptin today. My medical oncologist suggested icing so I bough a ton of ice packs. He also said I have to suck on ice chips for my mouth.
I'll update for interested readers how it all goes. I know I find it informative when others update.
Wishing you all well!
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Good luck 1982M!
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Best of luck to you, 1892M. Just did my 4th herceptin + taxol today, so it looks like we're on the same weekday infusion, and I'm just a little ahead of you.
Please let us know how it went when you're up for it.
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Thank you Aram and AMG2,
Treatment went well yesterday. I asked my husband to do all the stuff to get our kids ready in the am and I took a long bath and walked on the treadmill before treatment for about 20 min. I also walked for 15 min when I got back. That was harder since I was so tired. My med onc is pushing exercise so I’ve committed every day to walking. Hoping to keep it up.
It was a long day. I’m glad the next couple of times will be shorter. They gave me 10mg of dexamethasone and 25mg of Benadryl IV. I had to take oral famotidine bc we’re experiencing a IV shortage right now. The Benadryl made me loopy so I struggled with the icing my hands and keeping ice in my mouth. I would forgot to put the ice in my mouth, and then forgot to put my hands in the ice packs. My feet survived though. Lol. Strangely enough they hurt in the evening- pins and needles. I can’t tell if I accidentally froze them or it’s the neuropathy. I wore a pair of socks, stuffed gel freezers down and put on a second pair of socks to keep them in place.
I am happy it was only 10mg dexamethasone. I’m wondering if that does is common on the weekly dose of taxol?
I’m wondering how much weight gain most ppl have gotten over the course of 12 weeks? I read most women put on weight from the steroids with weekly taxol. I’m starting out around 140lbs and 5’6 and premenopausal which I also hear is the group that gains the most (yeah me! Lol).
Yesterday my muscles in my right arm really ached during the infusion of taxol. I was pretty out of it though. I did mention it and they weren’t concerned. They have to use a IV for the first two treatments since I won’t get my port until the day of my third.
Last night I slept ok. I went to bed around 9:30pm with the help of melatonin (ok’d by pharmacy). I work up a few times but got back to sleep. I work up for a few hrs in the middle of the night around 3-4am but got back to sleep and up for the day at 6:50am. My face was really hot last night and is flushed this am too. I’m thinking from the Herceptin. Interestingly I did feel my lumpectomy site ache during Herceptin infusion…. Or at-least I thought I did. I was a wee bit off with the Benadryl still. Lol. I do have DCIS left in the margins they will need to remove after so might be wishful thinking it’s getting cleared up. Haha.Today I am tired. I’m working from home and works super flexible so work when I can, don’t when I can’t. I have lots of banked sick days so I take them every Wednesday when I get treatment and as needed if I’m off for more then 1/2 day.
AMG2 I would love to hear how your treatments are going? Any tips for upcoming ones? Do you feel worse as they continue or pretty much the same?
Thanks again for well wishes. Hope the rest of you are feeling good!
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1982M, it is good to hear it went well. I did not have any weight gain from chemo. I started around 49 kilos, and ended around 48.5. My steroids was higher during AC, and same as yours during weekly Taxol.
About pain in your lumpectomy site, I didn't have lumpectory before my chemo. But my tumors were painful during the first time I got Herceptin as well. I Googled it and apparently it is a common side effect (with lumpectomy I am not sure).
It is good you could sleep. I had many sleepness nights during those 12 weeks the night of infusions!
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Thanks Aram! I did have multifocal DCIS left at my lumpectomy site found after surgery… so perhaps that is where the aches coming form? Not sure…. I am planning to go back after chemo to have a bilateral mastectomy due to the DCIS.
I am feeling pretty tired today now that the day is going on. Nauseated as well. I did go for a long walk this afternoon outside to help.
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THANKS toeveryone on the hand and boots ice packs. I ordered them off Amazon and will have them in time for next taxol. It’s a long drive so I will take a little ice chest.
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hello all. I finished week 4 of weekly Taxol and Herceptin. I've been using ice gloves and ice socks each week.
I find that the day after the infusion I feel great. The second day is less great and that's when the side effects start to show up.
The first week, it was a mouth sore.
The second week, my liver function tests quadrupled and I had some gastro discomfort. I started spotting well before scheduled menstruation.
The third week, my neutrophils dipped and I had mild fatigue but that more naps worked to re-energize me. I also had a skin reaction to the peeling off of the adhesive covering my port - peeled off the top layer of skin and it was angry-red.
This time around, I started getting numb fingertips. Started on my left hand with the pinkie and ring finger. Some insomnia. Liver tests returned to normal-ish. neutrophils rebounded
Surprisingly, my hair hasn't started falling out and it's been 26 days since my first infusion. I have had a long, very light menstruation for about 15 days though - premenopausal but I know my ovaries are being affected
Overall, I think I'm doing well. The neuropathy is concerning though because I don't want it and and also don't want dose reductions since I'm only 25% through. Also, about 3 pounds up since diagnosis. 1 pound upsince treatment started
I'll keep you updated.
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Thanks SmoothOperator for the update! I am suppose to get my period Oct 1st so wondering how that will be. I'll be done infusion #2 by then. I did get numbness and tingling this week already but goes pretty quick.
I'm only day 4 after my first taxol and Herceptin infusion. Day 1 & 2 we're rough. Lots of fatigue, brain wasn't running on all cylinders. Day 3 yesterday was good until the night. Right after supper I started getting pain in the pelvic region. I can't really explain it…. It's definitely pelvic area but maybe only a 4/10. I haven't taken meds for it but will (Tylenol/Advil).
My mouth taste like metal when not eating but food seems to still be fine. My appetite is fine.
I've been able to walk each day for 30-40 min but with this pelvic pain not sure if I can today.
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1982M, my period stopped completely after Taxol and it hasn't started yet after finishing about a month ago.
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