Weekly Taxol group
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idkidk....I hope you've read and digested all the wonderful words of wisdom from these ladies. You are in a very dark place right now. But, each day will get better. Thinking positive is a "must"....hang in there and know that all of us are here to help pull you through these trying times.
I'm suffering from severe neuropathy from Taxol. I can't drive, can't walk without holding on to furniture, walls etc. yes, there are days when I cry and ask myself if this is what I have to deal with the rest of my life...I am in pain 24/7. I pray each day it will get better. Maybe it will, and maybe it won't. Only time will tell. But, I'll keep hoping and praying.
Hope
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I have been getting colonics throughout my treatments and had yet another one today. The nurse is very convinced that my minimal side effects of EC and Taxol may also be due to this frequent (every few weeks) flushing of the dead cells and toxins from my system.
For as unpleasant as it sounds, it really isn’t a big deal. The whole process is clean and self contained in the machine. It isn’t painful nor is there any discomfort aside from the expected oddness of the tube being where is needs to be.
Actually everyone should do them. The toxic build up of stuff dates back to just about birth if not cleansed out. Also good for a healthy colon. Goodness knows we should also be keeping tabs on that end too.
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- Amelia, colonics sounds interesting, never knew they did that. Makes sense to me. Happy to hear it’s benefitting you.
- Moth, glad to hear no bone pain and shots seem to be helping then. Taste buds are important, but not having the pain is wonderful. I pray it continues like this for you throughout all infusions. The elevated heart rate I also had very bad. However I noticed as they lowered the steroids the heart rate got better rating and non resting. So hopefully that will be the same for you.
- Nona I’m sorry you got that darn neuropathy so badly. I know you were doing so well at the beginning with none. Praying it goes away with time. I can tell you that I had it badly from injury to several damaged nerves due to disks after a car accident years ago and the gabapentin along with Claritin helped within 3 months. Smile lovely lady. It’ll get better.
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I did my bloodwork yesterday and even though this last round I took Grastofil for 3 days after chemo, my neutrophils are stuck at 1.0 again. Platelets are down a bit too. The numbers are all high enough to get a reduced dose treatment but of course the MO wants me to repeat an hour before chemo just in case they bounce up so I can get 100%.
Chemo is just so hard on my bone marrow & I don't seem to respond well to the granulocyte stimulating drugs - it's a little bit worrying, kwim? There is that fine print risk of leukemia from chemo.....
Anyway, I'll be leaving for Taxol #3 in a few hours.
idk - hope you're having a good day!
hugs to everyone!0 -
I heard back from the doctor. The next step is a low dose of Cymbalta. He said studies have indicated it to be effective to relieve pain in 59% of patients with chemo-induced peripheral neuropathy. Now, lets just pray I'm in that 59% bracket.
Hope0 -
- Hi all. Wanna thank everyone, Moth, Amelia,Gussy, Nona for your encouragement, support, sincere caring and amazing strength and words. You all have touched my heart as always. And you guys can always manage to make me giggle when I don't really have the energy. Was gonna respond more in depth to each, but I'm so exhausted that I wanted to thank you all before you thought your words went unheard. I heard all of you and I read each more than once. Gussy you're adorable. moth you're a champ, Amelia you rock and Nona you're as sweet as pie. Thank you I adore you all. Everyone on this board I am blessed to call friends and everything you all write go straight to the core.
- To update, yesterday was THP #4 and today I can't feel the tips of my fingers in my right hand at all and my toes also on the eighth feel like that have floating eels in them. Omg it's a horror.
- So I wrote my resignation letter and will surrender my license on Tuesday.
- Also I broke off my relationship.
- I applied for SSD online today.
- I hired a Gardner, my kids will be going to Europe for the summer, Italy specifically.
- Not opening the pool I decided and not planting any veggies or flowers either.
- I saw a new BC surgeon yesterday and I like her much better. She wouldn't however agree to just let my boob stay. Doesn't think I should have a double mastectomy. We went back and forth and it's to be continued. However surgery is on or about August 11th or so. I'll be alone hopefully all summer and I will have this surgery without anyone knowing. I'll have to lie and say it'll be in September so no one insists on being by my side. I wanna donthis alone. I'll just have my one friend take me back and forth and she can stay with me for as long as I need her. But she's the best and knows to just be there but not there. She will have her own downstairs area so we hardly have to speak. This is all because I need to process all this alone.
- However tonight me and my ex ( haha ex) watched this movie on Netflix callled Faith. Was about 3 families that went though hardship blah blah blah. But what they all shared was faith in God. The movie was great and it made me cry, not cry but shed a few tears. I realize I said with tears that my problem is that I pulled away from God instead of getting closer to him. I lost my faith which tore me apart. Without faith we have nothing. I felt revived for about an hour and then lost that faith again. I think I'm afraid to have faith afraid that if I do I will be let down.
I must sound like a maniac. I'm not really I'm not. I'm just a complete mess. Through all this since January I only cried for about 2 minutes even before they told me I had BC. I realized it by the pathologist's face when he came in to ask to see my breast. I asked him you looking for redness, he said yes I'm so sorry. I cried, bit even cried, just tears came down. That was it. Oh yeah and when my hair fell out I shed a few too. But never cried a good cry. Can't afraid to.
Anyway. Thank you all.
Moth honey please stop with the negative thoughts of leukemia. Did doc say that or are you running down that road ?
Nona cymbalta read about it please. It's not a good drug hun. Coming off it will be hell. Has the neuropathy gotten any better at all ?
Forgot to mention. A friend who knows I hate chain letter type thing well sent me one 48 hours ago yesterday. And since it was a religious one and Jesus would get upset he was saying if I didn’t send it to 13 friends . And my reward from him would be 2 things and it would arrive in 48 hours. Well I did it and forgot about it until yesterday when 2 things happened. Miracles. 1st my new surgeon is the one and only lymphodema expert in the country and she’s isn’t doing a study on why some women get it and some don’t. So yeah my boob will be in the study without me. But she knows how to avoid getting it. That’ s a miracle for sure.
SEcond miracle is that she said she doesn’t see what the others saw that the cancer is at my collarbone. She says non of the images which were taken at another hospital before I switched to Sloan shows that. She had the Sloan pathologist check again and he agrees. Well they are gonna check again to be 3 fold sure. So wow I said idk I don’t need trust it still let’s do another Pet scan and she said no an MRI with contrast. Well sorry ignore I don’t believe ya but the last pathologists 18 months ago missed my my BC despite biopsy said I was just fine and cost me a boob and maybe death. So great news but pls test again.
So after that she said rads, yes you will have to have rads to spank any babies there away.
Thought I was not gonna have to have rads. So after THP 8 more. I rest for 4 weeks and then surgery and then 9 months of more chemo and rads together. So that’s another entire year. I begged not to make me wake up boobless. They can’t do that cause of rads and chemo. 9 months of it my goodness.
I’m greatful God I really am. I know it can be worse. But I still can complain.
Oh the steroids I hate them. I’m rambling. Sorry
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idkidk....I'm on a very low dose of Cymbalta. I have read about it and I'm not too concerned, as it will not be long-term. As for faith, I don't know how I would get through the day without it. I understand you wanting to be alone and process what's going on. I'm glad you have a friend that will be close by, though. Hang in there...all will be fine.
Hope
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Hey ladies. Now I really am a full-fledged member. Just got home from #1 of 12. Nothing to report. I'm feeling good, and am actually on a conference call. Guess we'll see how the next few days go. . .
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ingerd...Good luck on your Taxol journey. I had a total of 15 infusions. Never had any bad side effects the entire time until the neuropathy reared its ugly head around #13.
Hope
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Good to know, Hope. I know in many ways #1 is the easiest, and I haven’t even gotten to days 3-4 yet to see how I’m really handling it. I *would* like to make two parties tomorrow night—after that I don’t care too much
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lngerp....You might have a bit of achiness on days 3-4, but I had nothing horrific. I just planned to be very idle on those couple of days.
Hope
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Hope et al.—I know this info is back in this thread (probably multiple times) but I’m too lazy to dig through it all. Did your SEs tend to get worse through tx? I feel like I’ve read about cumulative effects over time. I’m feeling pretty good so far but am also kind of holding my breath that things will get worse as I get farther down the road
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BTW—in hindsight that was a slightly stupid post. I know hair/neuropathy issues are down the line—I meant more nausea/GI issues. Are people finding them worse as you progress through tx?
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Ingerp - if it's any help, tummy issues weren't much there for me (barring the first infusion which was hands down the worst if all, it only got better) I did however get progressively tired, and felt slightly high (bonus!). Neupgen shots caused the biggest side effects, pelvis pain when I stood from standing (jolting, but not awful). I remember anxiously awaiting the day I took my dex as it would relieve all the issues, including the fatigue.
It looks as if you took the first round like a trooper....considering parties, going to the gym right after, cheeseburger....hot damn! It must have given you super powers! I hit the couch and lolled like a slob after my first round...I’ve been continuing that tradition every Sunday at 4 pm for the last 4.5 years...just because lol
Proud of ya..high 5!
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Egads I plan my weekends around my naps—always have. In retirement I plan on making them a daily occurrence.
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Ingerp, the side effects of Taxol are cumulative so yes they will probably get worse.
For me it was the constant headaches, weight gain, especially from the steriod, tiredness and nose bleeds.
Good luck and congratulations on one done!
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Ingerp - the side effects are really so personal. I keep myself very active and never nap (otherwise I wouldn't sleep at night) and frankly, considering I've now been doing one chemo or another since Jan 2, I feel as through I am breezing through it will minimal side effects. Those that I have are just little annoyances (the occasional raw tongue, or bloody dry nose (first 4 Taxol, but not since), there were the bouts of heartburn at times....). I've always felt fine to do regular activities (grocery shop, trek around running errands etc).
My holistic oncologist believes that there is a lot of mind over matter with regard to side effects. And when the mind can't help certain issues (i.e. neuropathy) there are pills or vitamins you can take.
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Thanks very much for the responses. I’m kind of hovering between paying attention to my body and not trying to overthink every little thing (e.g., a bit headachy? I feel like I often am this time of year). I’m sure we’re all in the same boat. I think it boils down to the fact that I’m kind of a planner and like to know what’s coming but I guess I just have to wait and see as the tx progresses
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Ingerp, I've done 3/12 & so far I haven't really had any major side effects other than taste being really affected and my resting heart rate being elevated. I'm a bit fatigued but I think that's leftover from the AC which hit me hard and landed me in hospital twice; I was quite fit & exercised regularly before chemo but I've lost a lot of my conditioning. Taxol so far has been way easier for me than AC so I think it's one of those relative things, kwim? I feel great right now but if I hadn't been so stupidly sick with AC before I might find these side effects more troublesome.
I think one of the things that I've had to accept with this stupid disease is that we can plan all we want but we can't control. I was supposed to be finished chemo May 24 but instead I'm going on for 9 more weeks. We can't control our blood cells' response, we can't control how our hearts or immune systems will respond to the drugs. You just strap in, hold on & control the things you can - your humor, your attitude, who you spend your time with.... Some days while I was super sick from the AC the only thing I could control was which Netflix show I would binge watch
Just go with the flow as much as you can.
I did start going to a registered massage therapist just last week & I plan on going at least once a week for the duration of the taxol, to keep my back & neck relaxed and to attack any first signs of neuropathy if they happen to appear. Perhaps if you're getting headachy or not sleeping well, that might be a solution for you?
I've also got stupid seasonal allergies so sinus headaches get me if the pollen counts get too high...0 -
Hi there,
I'm doing AC+T and tomorrow would be THE DAY I receive my last taxol. Can't wait till then.
Idkidk, I have begged my MO for not giving me dexamethasone as premed, I've put on 10lb and hate that. She insisted that even I've not had any adverse effects it need to go in, just in case. Look like different centers are doing differently.
Mjb, good to see you here. You've always been an encouraging peer.
Amelia , yes,I've lost almost all of my eyebrow and lashes and I look terrible! I've tried to dye with henna but it fade away too soon I have to do again every other day. Gosh... and not to mention the taste buds! They have been alien!
Hariry
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Hariry--I asked my nurse at #1 if they'd lessen/get rid of some of the premeds if I do well with the T/H. I know some women have posted that if they haven't shown any reactions, they get less or don't get them at all after three or four infusions. She said my plan is to get them every time. That said, the steroid impact wasn't as hefty as I thought it might be. Yes I ate like a horse that day, but I actually slept okay that night (I took a Compazine, not cuz my tummy felt bad but for the "drowsiness" SE). I *do* feel like I'll pack on some pounds the next 11 weeks (also I think I'll eat more meat than I usually do), but that's not the end of the world.
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- hi all.
- Well
- Last week I gave them a really hard time. They did wanna give me the premeds after all. I was looking forward not to at that point. In the end they said nonpremeds no THP. Ha ok I agreed but only 8mgs of dex and 25mgs of Benadryl but pill form so that I wouldn’t feel like a wacko.
- I felt better, non drowsy and my sweets cravings are less. Yes Hariry the weight gain I definitely didn’t need. My face looks bloated and my eyebrows are gone. Eyelashes most still hanging on. I can’t stand how I look. My BEST friend said to me that wow now I look like a cancer patient. Well ty so very much.
- I. Ant draw eyebrows, I look like a clown. I refuse to go out at this time. Makes the eyes look buggy.
- This was #4 for me and I now have the bone pain all over, but my knees and thumbs cramp, especially my thumbs hurt bad and i started dropping things.
- And the big D. They gave me some meds for it cause Imodium didn’t work. This is working only that the D is less watery but anything I put in my mouth comes out within 15 mins.
- why they have to use Caster oil is beyond me.
- Do the BRAT DIET they said. Ok sure when my fat ass just want chocolate.and I always hated sweets. I am now craving at this moment ice cream. Always hated ice cream.
- I know I’m rambling again, but I can’t speak to
- Anyone but you guys who can relate. Everyone seems to feel I’m doing just fine and have just thrown in the towel.sort of have, it’s like whatever. But I feel I have the right to this attitude. I’ll get over it. Just let me feel
- Sorry for myself.
- Haven’t been to work. I did get dressed and ready today and then tried to do my eyebrows and that’s when I said screw it I’m not going out no way. Thinking of going to get microblading and risk infection. How bad can it really be ? I survived the sushi lol. Yes defiance is my thing.
- Well ladies soon we will all be done with this taxol and then anyone having surgery ? Radiation ?
- Me surgery in August, last THP July 11th.
- I just wish this was a cure, done and never to worry again. I mean really, read here someone had recurrence in 10 months. That’s just too much to handle. Broke my heart to read that and scared the heck out of me too.
- Ok gonna go eat some ice cream with hot fudge now and then poop and get ready for contractors to come tomorrow. Decided to continue fixing my new house. What the heck might as well make it cozy.
- Hugs to all. Hang in there.
- I’ll post a pic of my horrible eyebrows. I just can’t seem to get it right. I bought tattoos, tonight I’ll have my friend try and put them on. They’re suppose to last 2 weeks
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i never thought this day would come! Like Hariry, today is my last of 12 weekly taxols! I have very sparse eyelashes and eyebrows. My teeth are sensitive to hot and cold and sweet. (Does anyone else have this?) I have light brown spots under many nails that are OK but i will probaby lose the nail on the finger I slammed in a car door. I am anemic and get winded walking up hills or tall stairs. I won’t need radiation, so this s it and hopefully it did the trick. Cant wait to get the port removed! When will my hair start growing? So impatient!
(Stage 1, ER weak+; PR- HER2-, small tumor Stage 1 grade 3, mstectomy with DIEP back in Dec.)
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WOOHOOO StubbornDog!! That has got to feel awesome. I have no direct experience (I've only done #1), but I do believe from what I've read you'll start to see some hair growth soon. Can I ask just as another data point when you lost yours? (My college reunion starts the day I'll have #3--not holding out much hope I'll have hair by then. I'm planning to buzz it as soon as I see significant loss.)
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lngerp - Thanks!! I lost my hair 2 weeks after starting the AC portion of my treatment which I had before the taxol (4 treatments/8 weeks of AC). I think if you are starting with Taxol there is a decent chance you will have hair still at the reunion. Mine started to fall out in clumps so my son gave me a buzz cut. Some of the hairs held on but are no more than 1/4 “ it's very sparse. I am curious how it will come in when it does. I've been told to expect anything, with gray likely.
P.S. my only premed since Week 3 of taxol was Pepcid. But I am getting taxol alone, no herceptin.
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Stubborn--again no direct experience but I have read so much on BCO. I believe you first get some funky, curly "chemo hair." When you cut that off, it'll be more like it was pre-chemo. (Or at least that's what I'm telling myself. . . ;-) )
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- stubborn CONGRATULATIONS on your last taxol it most feel amazing.Good job you did it. I thought hair grew back during taxol after A/C, at least for some ladies did post that. Others said 4 weeks after taxol it started to grow faster. You will have hair for the summer. Short but hair.
- I’m having my 5th taxol tomorrow and my head has stubble, more at the neck and around outer head area. Not much by looking but I can feel it. Eyebrows gone, eyelashes very thin.
- Ouch you hurt your finger in car door, sorry to hear that. No neuropathy at all ? You didn’t mention it.
- So what now for you ? You done ? How does that feel after this journey ?
- Wishing you the best forever a healthy and happy life
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Thanks, ladies!
Sadly my hair did not start growing back during Taxol. Hopefully it will come back one day in the not too distant future!
I had very mild neuropathy. Only on the tips of fingers and it would come and go. (car door dinner is worst.) I used ice on my hands for every treatment. When the nails turn brown they can hurt and my pinkie toe did though is a little better now. I have not been able to wear even slightly tight shoes for the last couple of months. Good thing sandal season is here (they look fine with polish.) The tire pain started about at week 4 of Taxol
I had a good weekend emotionally. Sometimes I get down about what if I don't have long to live. Keeping busy helps. Sometimes it's the weekends when I ruminate and have dark thoughts.
My next oncology follow-up appointment isn't for 4 months!! I don't really feel totally done, but nice to know I don't have to go back soon (also except to get the port out.)
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Had MO check up today & eeeek, I've gained 2 kg in three weeks! I'm not surprised - my appetite has come back with a vengeance.
On the plus side, my neutrophils have finally climbed to normal levels so I'll get full dose tomorrow (it's number 4 out of 12; excited to be counting down from single digits now - 9!!!)0 -
Stubborn--how wonderful to have four <relatively> normal months ahead.
Moth--great attitude!!
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