Weekly Taxol group
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MLMSC, my numbers are falling too. I asked the MO about it last week and he told me that for someone off the street they'd be really worried, but for someone on round 2 of chemo, they're great. Like lmkopy2 said, watch your nutrition, get plenty of rest, stay hydrated, and you know you've done all you can.
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wow, I've been reading this thread on and off for weeks to try and work out what to expect when I move into the weekly rounds of Paklitaxel. Thanks for everyone's input. I've survived the first three months and I'm halfway having now finished the 4 A/C rounds. No head hair a few straggly eyebrows to help me colour inbetween the lines and a few ragady eyelashes to try and get the fibres in the mascara to stick to (that is a losing battle). 😖😂
It begins next week and I've ordered some glutimine - it's been wonderful to read all the tips from across the years and more recently. I have 12 rounds planned which brings me to 14 December. 4 weeks after that would be my mastectomy as I was inoperable initially. Good news is that it seems that one tumour is gone and the other half size. I'm seriously glad that I know the A/c worked made it 'almost' worthwhile 😁 Now we are apparently mopping up! Even dared to suggest that if there was no cancer cells present in any tissue after surgery rads may be reduced or not necessary (mind you I did have a malignant lymph node - which is now looking normal) so I guess it depends on some of that.
I also have MS so already have neuropathy and wonder how I might notice differences and do worry about the worsening. However I hear the first few weeks should be OK and hope it continues that way.
Natalie
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Hi All-just had # 8 on Wednesday and this is the first time, I have felt absolutely "crappy" legs are not working, arms feeling like they way a ton. Pains are "dancing" from head to toe. Today is a day of lots of fluids, bed rest and hopefully tomorrow is a better day. I am very unsteady and have the feeling that there is no coordination there either. Also feel "headachy" and have no attention span whatsoever. Movie day in bed, feel like I need to stay put so I don't wobble and injure myself. Has anybody else had these problems near the later stages of treatment? Did it get better? I am hoping this is temporary. #9 next Wednesday. Any thoughts would be appreciated.- Roofcat59 - I remember you saying one time that u felt like you were run over by a truck-how long did it last? At what number treatment did this happen? Thanks everybody for any input-wasn't expecting this. Hope everyone is coping ok. Be kind to yourselves. Tsu
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Hello tsu:
I am on a Wednesday infusion schedule like you, and Friday is typically a very "down", crash day after the steroids wear off. I usually feel sort of like one does after having been in bed for several days with the flu - weak, wobbly, and crappy - the way you are describing. I also get very "snappish" with my poor husband, as both my mood and my blood sugar tend to fluctuate pretty wildly on Fridays with the steroid crash. Usually, this lasts until about Saturday afternoon when I start feeling more like myself.
You are correct in recalling that I mentioned that after infusion #8, coincidentally, I felt particularly yucky pretty much the whole week, which was unusual for me. However this Wednesday for infusion #9, when they drew my CBC, I found that my WBC count had significantly increased since last week, which is an unlikely finding while getting chemo! I pay pretty close attention to my lab results having been a laboratory technologist in my previous life. The fact that my white count increased so dramatically supports the thought I had that I was fighting something off last week - e.g. cold, other virus, whatever.
Today I experienced my typical crash day after treatment #9 on Wednesday. We'll see if this week is better or follows last week's pattern. I've been told the side effects can be cumulative, so maybe that's what I experienced.
Hopefully, you'll find yourself back to normal soon! In the mean time, as you say, be kind to yourself . . .
Natalie68: So happy for you that the AC changed your status from inoperable to now eligible for mastectomy, decreased the size of your tumors and improved the appearance of your lymph node to "normal" !!! Good luck with your 12 weekly taxol infusions. I hope the glutamine helps you and that the neuropathy from your MS doesn't get worse. I had my worst problems with neuropathy during rounds 5-7. The good news is that it has decreased a lot for round 8 and 9, although I did start taking an increased amount of Vitamin B6 and also started taking alpha lipoic acid last week.
farmerjo: Welcome to the thread and good luck with the weekly taxol regimen. The weekly lobster roll comment was just a joke in my response to katjadvm. However, if you like lobster, a weekly lobster roll certainly couldn't hurt!
Glutamine on the other hand has been reported to be beneficial by a lot of people on this discussion thread in preventing or decreasing the neuropathy side effects from taxol. I can't comment personally on glutamine as I have not taken it. As for hair loss, after 8 rounds of taxol, I still have eyelashes, but have lost quite a bit of my eyebrows. Wishing everyone a side-effect free weekend with restful sleep and pleasant dreams. (( ♡ ))
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Natalie68: I’ve also been reading this thread on and off for
weeks so I would know what’s ahead with Taxol.
It’s amazing that you and I are on the same schedule and with very similar
DX. I also just finished my 4 rounds of
AC and I start Taxol on Thursday. My
end date if all goes well is December 15 with surgery 4 weeks later. I’m not sure yet what the surgery will be but
initially a mastectomy was the plan. I’m
having my chemo locally but the surgery will be in Boston. I have a meeting with my surgeon the end of
October to see how I’m doing. Because
ILC is not detected on mammograms (which I had regularly) or an ultrasound, I was
fortunate to find this myself. I had a sharp
pain under my arm where I felt a golf ball size lump. This led to an ultrasound, biopsy, etc. After my first AC treatment, the lump had
decreased by 50% and now it can’t be felt.
They did find through a breast MRI there are 9 areas in the left breast and
a PET found the lymph nodes near the clavicle were also involved. This is why I started with chemo before
surgery. I’ve was able to tolerate the
AC pretty well except the expected fatigue and mouth sores. I guess I’m not looking forward to the weekly
Taxol but my doctors have said it’s more tolerable than the AC. So, time will tell!0 -
Cathy, I am following your same schedule. Just finished AC and starting DD taxol Wednesday. I will have DIEP 12/13, then radiation in February. Hope taxol is better than AC although I tolerated pretty well, but glad it's over. I have started on my B vitamins, have my glutamine ready and my hand and feet icing procedure down
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Welcome, Cathy148, so glad you found this group! We look forward to hearing how your body tolerates the Taxol. Sending warm hugs to all you amazing women!
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praying for you cris8325...the light at the end of the tunnel is getting brighter <hugs> Michelle
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I have T3 BC and already have had right mastectomy and AC chemo. Taxol was given 5 weeks and stopped due to extreme neuropathy reaction. Oncologist referred me to a neurologist. I now have physical therapy for my balance, daily shots of B12. I was not in love with my oncologist and was very nervous when she informed me it would be too risky to continue the taxol infusions. Since I was scheduled for 12 sessions, what happens to my cancer? I will begin radiation treatments for 6 weeks next week. Exactly what questions should I ask my oncologist on my next visit. I'm so confused. Does the interruption of Taxol increase my chances of recurrence?
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Hello ladies, I'm checking back although I finished with 12 weeks Taxol 09/01/16. To me Taxol was an angel compared to AC although I tolerate both quite well. With Taxol, I love the energy it gave me but then I don't sleep enough. I didn't have numbness but body aches for the first three weeks, didn't take B12 or glutamine. But two weeks post chemo I felt intense stiffness on both front upper legs. I just ignored it and continue walking and stretching. Now 3 weeks post chemo it goes away gradually. Hope everyone feels better with Taxol.
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Finished taxol round 11/12... the finish line is so close. My oncologist gave me my referral for radiation oncologist...so can't wait to close the chemo chapter of this journey. Hope everyone is having a good week <
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Hi all!
Roofcat59
Having # 9 tomorrow afternoon-was wondering what the neuropathy feels like in the feet. Last 2 nights my toes had such pain and cramps, it kept me awake. I might break down and ask for pain meds tomorrow. Today it's not so bad. Spent about an hour walking on my tip toes, to try and stretch them out. Also wondering about the b vitamins. What side effects do they help with? Would a vitamin B. Complex be just as effective? Or just certain B vitamins?
Thanks for any input,and be kind to yourselves
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Hang in there. You're almost done! My peripheral neuropathy started with an itchy feeling on the soles of my feet. Then it changed to a tingly burning feeling. I took Reactine and sublingual vitamin B12 (1000 mg?). It also helped to put my feet up. Sometimes I took a vitamin B complex, but it didn't have enough B12. It did have 100 mg of vitamin B6 that is the maximum amount you want to take. More B6 is not good. My neuropathy was intermittent, and I haven't had any since 4 weeks PFC. I continue to take B12 daily and the B complex a few times a week. Hope your pain goes away soon.
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Hi tsu - my neuropathy is painful in fingers and toes, like someone is trying to remove my nails. Even the sheets hurt. I find it only hurts when I'm at rest. During an active day, I'm fine. After dinner, watching TV it starts up. I declined pain meds for now. I've had enough meds for now. Also it affected my calves. Will do Phy Therapy starting this week. Can't keep balance. Neurologist said maybe soak feet in Epsom Salts. Could help, can't hurt.
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PatZy,Roofcat59
Thanks-I know it's not nice to say but I always am a little comforted when I hear that I'm not the only one with certain side effects. Spoke with the nurse, she said the reason it is more painful at night is because the body is less active and nerve pain is more noticeable. Last night I massaged A535 into my toes as a last resort, not thinking it would work, but it really dulled the pain in my toes a lot. I was asked by doc toda about pain meds,changed my mind and have declined them. I'm not against them, but for me sorting out the side effects of the meds I'm already on, is enough in itself..... Tomorrow's another day
Be kind to yourselves
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I finished Taxol 12 today. I have not posted but it has helped me to read all of your posts. Taxol was tough especially the last few infusions. I have neuropathy in my toes and fingers (tingling and pain) and has spread to the bottom of my feet this last week. It is most painful if I hit my nails or stub my toes. It is bearable and as you get to the end you just keep putting one foot in front of the next. My MO said she would not reduce the dose anymore (reduced to90% on week 9) unless I could not walk or use my fingers; she is tough but I needed the push. I get an MRInext week to see how AC/Taxol worked on the tumors and to schedule surgery. My best to all!
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wow Cathy, nice to see someone else similar to me. Can't recall if I mentioned surgery same week. It's great to read everyone's journey and really hoping this is easier than a/c where I was totally exhausted days 5-8. I'm working do that's hard too. Mouth ulcers were horrible. Round 3 was really bad and round 4 I went down to 85%.
Had first Paklitaxel today. Was a bit of a freaked out awful mess before - worried about the effects. Can't do anything about it now so managing better. 😁
Well done to everyone who is through this part of treatment. 1 down.
Nst
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Finished taxol/herceptin #10 today. Two left for me. Hope u are all doing well.
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Hello all,
Finished #10 taxol today - now on to the steroid highs and lows. :-\
Soareagle: Welcome and congratulations all at the same time!
Cathy148: Welcome, good luck with taxol, and best wishes to you for the future. It sure is a long road we walk, but the nice thing about the discussion groups is that it makes it seem like we're all in this together!
Natalie68: Good luck with paclitaxel. I hope you'll find it much less problematic than the A/C regimen.
tsu: I started a post on my cell phone today at the infusion center, typed quite extensively, and then lost it when I went to re-read someone's post. I wish there was a way that the Discussion list software could save a draft that you could go back and finish (hint, hint to the Mods ;-) ). Anyway, about foot neuropathy, I didn't really have too much trouble with that in later cycles. In early cycles it was mostly some shooting type pain in the toe joints and mainly numbness and tingling in the soles of my feet, particularly after a lot of standing and/or walking. As far as B vitamins, my oncologist simply recommended B complex. However, I just read an article this morning about B12 deficiency and that it is more common than estimated in older people (me), persons taking an acid blocking medication (me right now) and that a deficiency can play a role in various neurological symptoms. The article recommended daily oral dosing of 1 mg Vit B12 in cases of deficiency, so I may be adding B12 to my vitamin intake, as mentioned by SerenitySTAT. I have found that OTC pain relievers like Tylenol do help with muscle pain and joint aches of therapy but not with the burning/stinging neuropathy symptoms in my case.
The character of the neuropathy in my hands evolved last week from burning and stinging to a feeling like my fingers had been slammed in a screen door - ouch! Still not unbearable though; my onocologist today said we will maintain taxol at the original dose calculated for remaining infusions as long as things don't get worse. I'm on board with that plan.
Imkopy2 - only one more round to go; that is so great!! My next step is radiation also - planning session scheduled for 11/3/16. Good luck to you with rads.
chris8325, tsu and ME: we're almost there too. " I think I can, I think I can" . . .
By the way, for anyone finishing up, did anyone do anything or do you have something planned - i.e. gift / food / card - for your nurses or other staff? Just wondering and any suggestions would be lovely.
Hugs to you all. ((♥))
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Weprepared a basket with cupcakes and a thank you card for the staff.
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Hi all! and roofcat59!
Had number 9 today. I too was doing the 'steroid, really fast, lots to say' kind of typing' I was almost done and my phone died. Lost it all
Infusion went pretty good, except my port had no 'blood return flow' Moved arms, laid down, pretty much did everything but dance and after 20 min I asked for it in my arm-just wanted out of there. For everyone with a port; appreciate it. Today was first time in my arm and I kept pulling at the tape thinking that it was making my arm burn-nurse asked me what I was doing, I told her the tape was really irritating my arm and she says "no, that's the chemo burning through the vein" A port is much better, my arm is still aching tonight. Going next Mon for some kind of port 'check-up' to see what's up with it. I hope they don't have to go in and adjust it. Ugh!!! If they do, worth it I guess, better than the arm. Bought some B complex 100 time released today. Will start them tomorrow.Thanks to everyone for the input on that. Bloodwork was great again today-so happy about that
Between bloodwork and chemo, had some time to kill, so I went and got a new hair doo-I'm clinging to the hope that I might still end up keeping some of it-lol. The hairdresser had fun and used #4 on the sides and the back, and short scissors on the top! Turned out not too bad. Ok, enough of the steroid rambling, I need to send this now before I touch something and lose it all!Be kind to yourselves
Roofcat59-you're so kind and thoughtful with all of your posts, you acknowledge all the new people and remember everyone else with your warm and intelligent input. I really look forward to them
Be kind to yourself too
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tsu: Thank you for your appreciative comment; I'm glad you find my posts helpful. I'm sorry about your port problem and the resulting sore arm; that is a bummer. Good though that you still have hair to trim! Mine is REALLY sparse on the top so have been using Buffs as a head wrap. I twist the extra fabric once in back and fasten with a pretty hair tie or barrette. Let's me pretend I have hair.
Again we are "sisters". I too had a problem with no blood return flow in my port (it is a double lumen port) for round #7. However, the nursing staff in my infusion center took a different tack. They also had me lie down, stand up, change my head position, and they did multiple heparin flushes to try to get the blood moving, but to no avail. Since they were able to put fluids INTO the port with no problem, they administered my taxol and herceptin per normal through the port.
Prior to the infusion they pushed a low dose of TPA (clot busting drug) into the port lumens and flushed it into the line with a small volume of saline and let it sit for a while, about 30 min or longer while pre-meds were taking effect. At the end of the taxol and herceptin infusion they flushed the port system with heparin again and tried to draw blood. Sure enough, they got great blood return from both lumens and there were no problems with rounds #8 and #9. You might want to run the TPA past your nursing staff before they schedule you for a port dye study for nothing.
It is fairly common after the port has been in for a while for a fibrin capsule to build up on the end of the catheter tip. When they push fluids in, it functions OK because the pressure of the fluids moves the capsule out of the way. But when they try to take blood OUT, the suction causes the fibrin to "suck" down over the catheter tip and blocks the blood from flowing into the tubes or syringe.
Wishing you luck with your port. If it was working fine up til now I'd lay money on the odds that it is a fibrin problem - pretty easy to fix if so.
All the best, roofcat
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Very nice soareagle! Thanks for the suggestion 😊.
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TMI Alert...just started taxol Wednesday after A/C and is there something in it that makes your bottom burn like crazy after bowel movements? The also gave me potassium, maybe that's it? This is not fun
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hi ladies. Just want to check in. Unlike many of you, I started with a protocol of 12 treatments of Taxol/Herceptin, no other chemotherapy first
I have developed a SE I don't read much about. Seems the taxol has caused a breakout or rash on my legs and arms, from my knees and elbows down. Sores don't itch but are tender to the touch. I was advised to use hydrocortisone cream. I am told by MO that the Taxol is basically attacking any place that likely had previous sun damage. My infusions are on Tuesday, the rash/break out is very bad on Thursday Friday Saturday. By Sunday it starts to fade a bit. And then I get ready to start again. Basically my arms, legs and face, are all tender to the touch and feel like I've got a bad sunburn. So far I don't have any rash on my face, but I do have two spots on my upper chest. Does this sound familiar to anyone?
I admire each and every one of you and marvel of how you are all handling what has been thrown your way!
I don't post often but have gained knowledge and most importantly strength from all of you. thank you!
M
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Hi MLMSC. I just completed Taxol last week. I had the same SE with a breakout/rash on my forearms, chest, upper back, and forehead. I had not heard of this connected to previous sun damage however that does make sense with the locations the rash showed up. It was not painful and hydrocortisone cream helped. It seemed like it went away each week right after an infusion. I think that the steroids cleared it up and then as the steroids wore off the rash seemed to come back. This was different from the chemo glow I got from the steroids the day after an infusion (cheeks and face looked like I had been out in the sun). S
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MLMSC- I'm am sorry to hear you have this SE, I did not experience this but my warrior sister ended up with a severe allergic reaction one of the last infusions she had, I know there is concern when we start this drug, is it possible your body is slowly developing one? Would nightly benedryl or Claritin help? Hugs to you💕
Jiffrig- I had a similar SE, it could be related to something you're eating. I didn't get diarrhea but I did go multiple times a day... I was so scared! Turns out my body didn't like coffee (reg/decaf) & it didn't like the almond milk I was using. I took some Imodium to stop from having to go made a diary of what I was eating, figured out the culprit after a week I removed things from my diet & was good to go! Praying for you🙏🏼
Cathy148 & Natalie68- AC is horrible & I wouldn't wish it on my worst enemy....its behind you (thank goodness) tomorrow is my last of 12 weekly taxol infusions, it's a long road but it is so much more tolerable, you can do things not possible on AC. By no means are you running a marathon but you can live daily. Believe it or not 12weeks goes by quickly, watch for neurapathy & please say something to your MO... There are things to help you! I had horrible neuropathy 3 weeks in & now I'm good, nothing to mess with. I will keep you both close in my prayers.
Roofcat- you rock sister, so inspirational last 2 weeks of taxol fly by...just had my RO consult, set up appointment t the week of 10/17... Rads begins 10/24, 28 rounds will be finished Dec 5th, I get 2 days off for good behavior aka turkey day & Black Friday lol!
To all of my warrior sisters, I hope you have a great week, remember none of us are going thru this alone, prayers to you all! Better days are ahead💕
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MLMSC: I had a rash break out on the backs of my hands and some on my arms. They said it was the Taxol. They told me it was from going out in the sun and advised me to wear lots of sunscreen, stay covered and use hydrocortisone cream on it for the itch. My feet and ankles have been swelling since Taxol #9 and I have been getting bad cramps in my toes and feet the last few nights. Maybe I need to ask about the potassium.
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Finished 12/12 taxol today...FINALLY closing a chapter of this breast cancer journey! I'll take it
Hope everyone is having a good week
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Yay for you, lmkopy2!
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