Weekly Taxol group
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Welcome, Annievac! We hope you find this community to be a source of support as you begin your treatment, We're all here for you!
The Mods
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I read a lot about cold capping before tx and I know some women had a pretty good result but some did not. I also read that while Taxol is sometimes considered "chemo lite", it is one of the worse ones for hair loss. They told me ahead of time that I would lose my hair--everyone I'm aware of on weekly Taxol (who didn't cold cap) did.
I'm off to Herceptin today too! I'll have my last one May 17th--you guys encouraged me to check the calendar. I think seven more after today. That's something!
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beeline, I am actually a case of early neuropathy that got better during Taxol. After about Taxol no. 4 the neuropathy was bad, burning, stinging that was waking me during the night and I couldn't walk properly. My MO was talking about stopping the taxol after dose 6 or after dose 9 at the latest. But then, I had the feeling like I was getting used to Taxol... the neuropathy stayed the same, didn't get worse, my MO was questioning me carefully and then even sent me to a neurologist. after dose 9 the neuropathy was much better aand I was able to get all 12 treatments. after dose 10 I went back to my walking 10000steps a day, which I was definitelly not able to do with the neuropathy! I don't understand all this properly, of course.... now I think the neuropathy was a remainder of AC in me that got combined with Taxol. Now I am 2 weeks post last Taxol, am growing dark hair and my neuropathy is about 95%gone. Of course, it may come back in a month or in a year... but now I am walking long walks in the beautifull snow without any problems.
What I was doing: icing hands and feet from the first Taxol and taking a supplement with B vitamins and alphalipoic acid recommended by my MO and also my neurologist.
this is my head at exactly 2 weeks post last Taxol. I was completely bald from the DD AC. The hair started to noticeably grow after about no. 4. I shaved it twice during Taxol to get a more even look.
Edited to add the part "what I was doing"
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jaboo thanks for info - did your dr suggest any homeopathic aids to help neuropathy? Have hard ice is good? And what is DD AC
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Annievac, I edited my post to add what I was doing. I think the icing of hands and feet might have really helped. I was icing with gel packs (it's simple and relativelly cheap, no spill danger). DD AC is dose dense AC - AC given every two weeks instead of every three weeks.
(editing my Engl., sorry for weirdness, it's not my first lang.)
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Hi Annievac (and everyone else),
I cold-capped (using Penguin) while on Taxol and, eventually, Abraxane. It worked like a charm. I would estimate I lost 20% of my hair, and I was the only one who could see a difference. It's a time-consuming process, but totally worth it for me. Happy to answer any questions.
I am now four months out from my last chemo, and I finished radiation three weeks ago. I have some minor lingering side effects, but I feel like myself again. The foggy brain has cleared, the fatigue is gone, and life is pretty much back to normal (well, normal now means Herceptin infusions every three weeks and daily Tamoxifen, but that's ok with me!).
I am thinking of all of you who are starting down this road -- you will be done with chemo before you know it!
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Thanks everyone for your replies about neuropathy. PatinMN, I actually bought some glutamine at a supplements store while Christmas shopping yesterday so will give it a try. I bought some b vitamins, too.
Jaboo, that’s so reasssuring, thank you. Did they reduce your dose of taxol or did it just get better on its own
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Beeline, no, my dose wasn't reduced. The neuropathy just got better on it's own and maybe due to the icing and B vitamins - there's no way of knowing. I feel about 5% of it, even as I type now - no pain, just a weird feeling in my legs, a bit like crawlies. I hope it will go away, but it's just a small nuisance.
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JaBoo-You have so much hair; I'm jealous!!! Mine is coming in grey so it's even harder to see!
Anyone have issues with muscle pain or tightness after Taxol?? I have some neuropathy in feet and hands, but it not so bad. What is bad is the tightness and soreness of like every muscle in my body. This started about a week after my final Taxol.
Nothing touches it. Not Advil, not hot Epsom salt baths, not stretching or walking or massage. Any advice or experience from anyone? I'm bummed that I feel so much better now, except for the tightness and soreness.
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Good Evening Ladies- I just had my 11th Taxol today- only one more left!!! I did not cold cap but I do ice my hands and feet. I use ice bags on my hands and I use the gloves on my feet. This has worked the best for me because I can take my hands out of the ice when I need to and since I tend to use the bathroom so much because of all the fluids they give me the gloves on my feet make that easier. My blood work continues to be good. My hemoglobin is a little low but my white blood cells and neutrophils are great. This is a good thing because there is a lot of sickness going around at the school I teach at. I'm so excited for winter break . My SE are doable but I am really getting tired of it all. I have my infusions on Fridays and Sundays, Mondays, and Tuesdays are more worse days. I'm still able to work but I just don't feel good. I have very loose BMs on those days, thicker mucas, and more tired. Water is my best friend on those days. I noticed a little nephropathy a couple of weeks ago but I believe that has gotten better. I pray for best for everyone.
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Hi Misha,
I am 22 weeks PFC from taxol and abraxane. I had severe myalgia and bone pain from taxol and was switched to abraxane which seemed ok until after the 8th dose after which it became worse again along with neuropathy so my chemo was stopped then. Happily all the neuropathy is gone, the myalgia continued to be a problem, it is getting better now but I needed narcotic pain relievers and muscle relaxants to be able to function normally, like you nothing else would touch it. I was very strong and fit and even exercised during AC, everything changed after the taxane drugs. Initially just increasing my normal daily activities would trigger worsening muscle tightness and pain. Now I feel I am finally improving and decreasing the narcotics through my pain management specialist. I am able to exercise and have a full active days (sometimes up to 8 hrs of errands and activities including walk/running on trails and up and down hills with my dogs, as well as daily yoga routine) without having to return to bed in pain and take strong meds. I took acetyl l carnitene, alphalipoic acid, and B6, B12, magnesium, and will be trying d-ribose and coenzyme q10 as they are known to help fibromyalgia patients.I also get almost weekly acupuncture. Basically tried everything I could to get rid of it since it really effected my QOL. This was extremely frustrating and depressing for me for some time so I am so happy that despite having gone through and completed rads 3 weeks ago ( minor setback) I'm getting much better. I'm a hospital RN and need to regain strength and stamina to make it through 12 hr shifts again---my goal is back to work by end of january-feb, which would be about 1 yr after all this started. Hang in there, I hope this helps, I would seriously consider getting a pain management doctor if you can, he was very understanding and helpful in managing medications without judgment and making me feel bad about it or like it would become a future issue . Wishing you well and healing.
PS Even though I sometimes feel like this is what 80 or 90 yr olds must feel like when they get out of bed in the morning, my general health is excellent. I'm never sick, have full head of hair almost 3 inches with barely any grey (started out looking grey but got dark as hair filled in and only some at the temples now), nails unaffected by chemo, and had minimal mild rxn (considered by docs) to rads
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Finished my 20 weeks of Taxol and A/C. I thought I would be happier. I don't know how to feel. I have an MRI scheduled for the day after Christmas and my Lumpectomy for Jan. 4th. This MRI is really got me. I am terrified that these tuners did not shrink. I am having a hard time being positive.
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Misha....I have horrible calf pain when I get out of bed in the morning. The neuropathy in my feet is bad. Once I'm up and walking a bit, the calf pain subsides. Physical therapy helped me a lot...just a thought. I also take 30 mgs. of Cymbalta a day, along with 300 mgs. of Gabapentin - spread out morning, midday and before I go to bed, so 900 mgs. total.
Hope
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mlghtn - are you on any hormonal therapy? I ask because your problems sound like those described in the hormanal therapy threads.... is it a possibility, that the pain and general feeling of being old is from your HT?
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Jaboo-- it was not caused by hormone therapy since I just started tamoxifen this week. It could be that being thrown into full menopause by the chemo contributed. But several doctors MO, RO, pain specialist and integrative medicine MD agree that it is myalgia from the taxanes--not joint pain. They tried me on celebrex initially thinking it might be arthritis but it made no difference at all. Also my integrative MD/acupuncturist confirmed that when I complain of knee pain, its not coming from the joints, rather the muscles that are so tight that the tendons are pulling at the knee joint. RO told me he has heard of this many times and usually takes time to resolve completely--up to 2 yrs sometimes😐. So far I can definitely say its getting better as I am doing much more than a couple months ago with less pain and less medication. Also fortunately I am not noticing any difference since taking tamoxifen--but its only been a week. Its nice to hear you have had such a good recovery from your treatment. Trying to keep faith that since this has just been the worst year ever and is almost over, everything will continue to improve, and all of this will eventually be a distant memory for all of us🙏
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mLghtn and Nonahope-Thank you for sharing your stories! I have my bmx this next week, so I’ll be sure to notice how the narcotics effect the soreness and tightness. If it improves with those meds and gets worse again after surgery recovery, I will definitely go to a pain management clinic! I just want to feel better again!
SIsterStrong-Almost done!! Enjoy your Christmas break! When you go back to school, you will feel better!
VolleyballMom-Prayers that your mri shows a shrunken or no tumor. Assume it does, and put it aside until Wednesday. Write it down and burn it in the fireplace. If the thought comes back, do it again.
Wishing everyone a Merry Christmas if you celebrate!
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I ran off a four-page SE log in four copies, in case I start accumulating multiple complaints. So far, a daily commentary suffies. I also printed out some Knots of Love patterns for hats, an attractive selection. Put it all in a paper binder, ready to take along next week. The vape shop is not yet open, will have to go back downtown to get more CBD vape juice, wish I could vape during infusions. But right now I am waiting for the mail-- expecting a smoothie machine and some tahini so I can have hummus whenever I want without complaining about such a healthy and craved snack. Got bunches of smoothie ingredients yesterday.
My cording is getting much better. Improving range of motion, and exercising multiple times a day.
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Volleyballmom-- I totally understand your anxiety, I can't see your signature so I'm not sure about the specifics of your tumor/situation. Surgery with clean margins is still the biggest factor in getting the cancer out and preventing recurrence, as long as the cancer didn't grow it can be a good outcome. My oncs told me its all about getting rid of the "bad actors", TN's are more likely to have complete response since they are typically faster growing and chemo works best on the most aggressive faster growing cancers--high ki67. My cancer changed (and shrunk)from a very aggressive fast growing to a very indolent slow growing after chemo. Radiation is additional insurance and I almost didn't want to do it--was more scared of long term SE's than chemo, but its been only 3 weeks since I finished and I can't even tell I did it anymore.😊 I know I was terrified for my initial MRI thought I might pass out from anxiety, I had to do a meditation mantra the entire time to control my mind and it helped a lot. Not sure how you feel about it, but the meditation has helped me greatly in dealing with all of this, it could also be a prayer, something to focus on and repeat (mantra)to control your mind from going to the bad places and keep faith. I'm so sorry you are going through this during the holidays, that sucks even more I know. My mentor always reminds me we can't do anything about the past, and the future is just an unknown --which can be good. We can't dwell on these and ruin our present time, which all anyone really has--even if they don't have a ca dx. Sending positive vibes ((())), best wishes for you
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I nwed to dump... my Oncologist and BS said 1. Because in my case "we" caught my cancer early..even though it started out as 1 tumor at 11 o'clock @ 1.9mm iny L breast. They both said I have a long lifetime ahead of me. However within 1 month my breast became multifocal with another spot @ 3 o'clock 5mm and another under my areola just below thw nippl5 @ 6 o'clock that was 6 mm (dx pagets) & a benign spot @ 3 o'clock. Sorry but this eats at me.
I think I'm doing all I can to become a long time survivor...but I read the stats of IDC and it just depresses the crap out of me. From what thw stats say I have 10 more years or am I reading it all wrong?
I have a great support system and even have a younger neighbor who was diagnosed with IDC L breast stage 4 who is my biggest cheerleader. .. she said screw what the stats say and just LIVE my life with the hope & believe that we will outlive that 10 years. ...
Please pipe in because I really need this gloom to lift off of me but I'm just so darned confused!!
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mLghtn, thank you. I thought my stats were on. I was caught early with 8 mm in right breast which spread to 1 lymph node. Triple negative and a high k167. I will try any mantra to get me through that mri. I am terrified and tired of feeling like I am going to end up a statistic. Did they get all your cancer out during surgery?
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Nanette, I felt better once I got my offending boob amputated. Even though the diagnosis changed from 6cm DCIS to 10 cm DCIS with 3mm IDC. Righty had been a bad actor for 50 years. Lefty is my good girl, and I hope I get to keep her the rest of my life. You will do fine. Of course, I just got my CBD for the month.
VBM, I am willing to hazard a guess that the bad actors are much reduced, and surgery will reduce your anxiety a hundredfold.
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Volleyballmom- Nobody wants to feel like a statistic, I really dislike statistics because as a hospital nurse I see all the statistics. Even with the odds stacked against them, there are always people who believe and beat the odds. I like Misha's advice, when your mind goes to a bad place write the bad thoughts down and burn em--they're not serving you. Sounds like yours was small and caught early and with high ki67, the odds are in your favor. So my tumor was HR+, 2.7cm, very aggressive, ki67=85%. I was super scared, my BS (my cheerleader) said literally: good news with a ki67 that high chemo works really well! I was like good news? WTH? totally shocked-- chemo?!. Anyways it worked, complete imaging response post chemo MRI. At sx no mass left, just patches of scattered less aggressive HR+ cells (found through path testing, total 2cm). My BS took like 6x6cm to be safe and got really good margins. MO said typical to see mixed ca cells in HR+ tumor and rare to have PCR since the slow ones don't respond (actually told me the other day they can be so mixed that I could easily have had some TN cells in there too). Had oncoplastic sx with tissue rearrangement and breast lift at the same time, so it looks great--just different from the left, I'm sort of used to it now and have to wait at least 6 months after rads before PS will match it. Overall I'm very happy with outcome even though I didn't have PCR.
Stay positive, you blasted it with completing all 20 weeks of the aggressive chemo regimen, that's awesome!
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Hi, found this site recently and been reading lots of threads. Have 12th of 12 weekly Taxol / Herceptin chemo infusions this Wednesday. Will be so glad to be done. Had to skip a week after #8, got very peculiar alarming sensations like furry animals running up and down veins, and bearing balls rolling in veins. I think I got dehydrated which made it bad. Also terrible neuropathy in hands and feet. Was diagnosed with diabetes at same time as breast cancer.
Have been drinking a lot to stay hydrated, neuropathy much improved, strange sensations mostly gone, have some muscle cramping and aching / shoulder soreness. Had incessant nose runs and nose bleeds which I stopped by using Vaseline with Coca Butter from Amazon.
Red counts are way down. Have double mastectomy scheduled for January 23rd. MedOnc going to start 3/x/dose Herceptin next week. Need to ask him to give me whatever possible to boost blood counts and platelets before surgery.
MedOnc says he's going to probably switch me to TDM-1 Kadcyla after surgery pathology since new studies show it bombs the $#!+ out of this type of cancer.
I will be refusing any messing with lymph nodes. Studies show zero better survivability with lymph removal and I don't want any armpit pain / numbness / loss of function / loss of range of motion / lymphedema etc. We will just assume this aggressive tumor spread into some lymph nodes. Possibly do radiation in a few months -- it will take me longer to heal from BMX because of the diabetes.
Got a Dexcom Continuous Blood Monitoring system which is awesome and makes it easier to control blood sugar.
Wishing you all a Merry Christmas and best of luck on this breast cancer odyssey.
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To add to above, what really helped was icing hands and feet during Taxol chemo with mittens and booties got off Amazon. Amazing how helpful.
Take supplements, Neurosol, Alpha-Lipoic, Super B Complex, Magnesium, Vitamin C, etc, long list of supplements.
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Nanette—I second Misha, your hair just might get thinner. My hair came out by the gobs with the DD AC. It’s growing quite well on the weekly Taxol.
1 more Taxol to go for me. I can’t believe it.
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Hi all, I just happened to see this thread and thought I might get your insight, opinions, suggestions. I am day 7 after my first tch (docetaxel, carbaplatin, herceptin) infusion. I will be getting weekly herceptin with every three week tch for 8 rounds? And then herceptin every three weeks for a total of one year....? Its all still pretty new, but I believe that is my treatment plan. I was doing very well, with minimal side effects until days end of day 4 when bone pain began. Day 5 and 6 were even worse. I decscibe it as my legs feeling like they were being crushed to pieces. I also had some arm and back pain, but nothing as severe as legs. I'm not on neulasta, so it must have been from the docetaxel? I am much better today, but I not looking forward to that happening again. I got through with friends rubbing my legs and Tylenol, ibuprofen. I'm thinking that I might need to ask my oncologist about neurontin?
I hope you are all having a wonderful holiday time, and thank you for making me feel like I'm not alone!
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I have been on gabapentin (neurotonin) for years for another reason. It is a good idea to ask for something for nerve pain. Last night I was feeling lightning strikes going down my legs, moved them around, tensed them up, and finally found a position which minimized them. I forgot my morning dose yesterday, so I don't think I'll ask for more (yet). I take 2100 mg a day.
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Ladies. Thank you for all your encouraging words. Trying to relax today and not focus on tomorrow. Lol. Merry Christmas everyone.
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Merry Christmas everyone!! I hope each of you has had a great day wi5h your families and loved ones! !
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