Weekly Taxol group
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I posted a few weeks ago after my first weekly dose of taxol and herceptin regarding hair loss. Thank you to everyone who replied and provided insight. It was greatly appreciated. Yesterday I completed my 5th of 12 weekly taxol treatments. So far so good... Other than feeling tired on the weekends and some diarrhea, it hasn't been too bad. My hair did begin thinning after the 3rd treatment and after the 4th treatment it's started coming out in handfuls when washing, combing and drying my hair. I would say I've lost 1/2 if not 2/3 of my hair. I did start with tons of hair - very full and thick so that has helped. I still have full coverage and very thin and can now see my scalp at my part. My MO who I love says it typically thins out between weeks 4 though 6 then will stop and that I shouldn’t rush to just shaving it off and going to a wig. I did, however, order my wig this week with anticipation of losing a lot over the next few days and possibly start showing some gaps in my hair.
What i'dlike to know is whether those of you who started with thick hair, if you stil lost enough to need to shave it or need a wig etc. ?? The hair everywhere is driving me nuts at this point but don't want to over react if I don't need to. Planning to wait and see what this week brings, in any event.
Also, another issue I that has just started was crazy diarrhea and upset stomach beginning on day 5 and lasting through day 6 - that was after my 3rd treatment. Then this past week, 4th treatment, day 5 in afternoon and evening and throuout the night I was very sick to my stomach with a sour like feeling. Ultimately vomitted but still continued in to the wee morning hours. I probably took my compazine too late. The MO seemed perplexed by it and thought it could be something else as I should have been getting back to feeling better by day 5. I'm waiting to see if it happens again this week - hope not, but accepting it if it does and know I will get through it. All in all, I can’t complain and know it could be worse.
Appreciate all your thoughts on all this. Thank you!
I wish everyone the best going through their treatments !!!
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And here I thought I was done with Taxol. MO decided to continue it until surgery along with the Herceptin and Perjeta. Boo, hiss..
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Jmac--I have a lot of hair and knew I'd lose it. I think it looks weirder to have long hair with a visible scalp than to cut it pretty short. I cut it down to about 1" maybe three weeks in, and then down to 1/4" a week after that. I also never wore a wig--I wore baseball caps when I was out except for the gym, when I'd wear a bandanna. I never had nausea/diarrhea but I also took prescription anti-nausea meds for several days after treatment, really just because I had them and because I think they helped me sleep after the steroid pre-med.
dvhmouse--so sorry about that. How many more weeks will you have to do it?
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After 90 minutes, they’ve finally straightened out my treatment schedule. This will be my last Taxol!
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Hooray!!
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Jmac67,
I too had very thick full body med length hair. It started thinning out at #3 by 4, it started coming out in sheets and looked terrible. By #5 had it shaved off because there was not much left. I did have wigs which I wear when I go out anywhere but find they are very hot. I'm not a hat person. Around house wear pull on hats, and when I attend grandkids soccer games I have a hat that has hair on edges which works well and not so hot. Looks like my normal because I wear baseball caps alot out on boat and to their games. I did have a taxol reaction on my scalp and skin. I had open sores and rash on scalp that was very very itchy. Derm gave me some high steriod cream and it has cleared up thank god. It was also biopsied and was shown to be taxol rash/reaction. Being that cream has helped taxol reaction, not adjusted to lower dose. I personally feel it was because I shaved it off But the alternative was head with mostly bald spots and I was sheading worse than the dog. Clogging brush and drains. Now just bald with some fuzzzies coming in, non itchy.
Diarrhea starts with me day 3, lasts for a day. Just comes on. only lasts a day. I did have a day 3 weeks ago after receiving carboplatin in which I vomited all day 2 days later. Took compazine and did not help. My Oncologist and chemo team told me I should of called them to come in for fluids. When I get carbo this Friday, will start with compazine that night. I was told we shouldn't vomit with taxol and premeds they give. So that is why I think it was carbo or trial drug.
For sick to your stomach feeling trying eating tums. They help with GERD type symptoms. Or Pepcid OTC. That helps me greatly. My greatest complaint with taxol and carboplatin is the overwhelming exhaustion 2-3 days post infusion. Slug is a better name for it. My counts are pretty low so I think that has a lot to do with overwhelming exhaustion. I don't know if i'm getting trial drug atezolizmab/placobo every third infusion. In a double blind study. No appetite days 3-5, then watch out. I'm staving. If compazine doesn't help try zofran. I also have tried medical marijuana and that helps also. Stay away from gummies, I vomit them right up. The vape pen does help immediately. I was also given Ativan to help.
Just finished # 9 taxol, next week all 3 drugs, Almost done phase 1 then on to AC for 4 doses. Than 4 weeks off, then surgery. Just want this overwith. Good news is tumor in right breast no longer there.
Marta
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palmetto,
Congrats of finishing up with the horrible drugs. Sending positive vibes for quick recovery post surgery!
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Martaj, you are moving right along! Congratulations on the tumor no longer being there!! That is huge news! Our tumor was no longer felt after AC #3. Our AC was reduced by 20% on #3 and 4. We finish Taxol #12 of 12 Tuesday!!! Surgery is scheduled for 11/5. God bless and it sure seems like everything is going the way it should for you! Hang Tough.
J
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Marta that's wonderful that the tumor on the right is gone!
Jr yay about chemo being done on Tuesday!! I hope the next month for Nat goes quickly and the surgery is successful with good results and quick recovery!!
I hope everyone else is doing good and keep fighting the fight to kick cancer's ass!! 🥊🥊
~Katie💗
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beautiful Martaj
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Jmac - I had very curly thick hair that I wore about chin length (long enough for a ponytail). My hair started coming in clumps after the 3rd or 4th treatment. I think I clipped it short around the the 5th treatment and then even shorter around the 7th. My husband said I had a very bad looking comb over (longer hair but showing scalp) and that's when I clipped it off. It felt a whole lot better after that.
I never shaved it down to a clean scalp (and it did not all fall out) so I had little bristles. I wore a night cap until about week 8 and then it stopped coming out. I am 6 weeks PFC and still have more scalp than hair but it is getting fuller. I still wear soft slouchy hats to work
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jMac67: I knew I would have hair loss. I had longish, very wavy hair. I had it cut short before I even started IV Taxol. Before the 2nd infusion I had to cut back to about 1/8 inch. The thought of my hair coming out in chunks in the shower, pillow, bald spots was too awful to consider. My hair is now coming back. In fact, a little came back before I finished Taxol.
Those chemo beanies are well and good for the infusion centres or keeping you head warm at home but I always thought they screamed "CANCER" and I may as well have a big C on my forehead. Headcovers Unlimited (oops - am I allowed to pitch?) have over sized, block printed cotton scarves, They come in lovely colours and prints. I bought 8. I fold them in a triangle, cross the ends behind my beck, bring up the corners to the top of my head, tie, then wind the ends around themselves. My DH calls them my avocado picking scarf. Friends say It looks BoHo. I have a nice wig made with synthetic and human hair but it was too hot in the summer.
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Elderberry- like you I didn't think I would be able to handle the hair falling out in large chunks so 2 weeks before chemo started I went from peat my shoulders up to my chin and 17 days after my 1st AC treatment I went to a salon and had them buzz me as short as they could. It continued to fall out on its own though wasn't nearly as nnoticeable.I look at it as I took my hair, not chemo, though chemo is delaying it growing back and giving me a new way of wearing my hair.
I hope all you warriors have a great week Ann's keep up the fight to kick cancer's ass!!🥊🥊
~Katie💗
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Elderberry- I love your scarf. It's really pretty.
Marta- that's great news about the tumor being gone.
This Thurs is my last taxol! I'm so happy about that, but next I go on to AC. I've had few SEs with the taxol until now. Has any one else had swollen ankles? My knees and lower legs also started aching.
I saw my breast surgeon today and she was excited by my progress so far. She expects me to have pCR...I really hope that is the case. My tumor was massive.
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Hi everyone, I am new to this group. I start weekly Taxol treaments this Friday and I am TERRIFIED! I've finished eight weeks of AC and have been dealing with the extreme fatigue from that, plus the effects of the anti-nausea meds that I'm taking. I'm trying to keep my mood positive--some days I'm OK and others I feel almost guilty that I am taking so much time from work to deal with this, and I don't know why I feel like that. Anyway, I ust wanted to introduce myself and could use some encouragement. Ta!
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Divergent, That is great you are finishing up Taxol. I have 10/12 Friday, then start AC. Light at end of tunnel for chemo. Should be finished by chemo by Thanksgiving, first week in December. Then a couple of weeks off and surgery? After surgery radiation. Just want this over with. The cumulative effects are taking its toll. Tired of being tired. Blood counts low.
Dawn1970, You will find these posts very helpful. I have. Good luck and I hope you don't have many SE. Being that you did AC first I'm sure you'll do fine. How were SE of AC? I start that in a few weeks. Still have 3 more Taxol to go with one more Carboplatin. Plus trial drug/placebo every three weeks for a year.
Meet with genetic counselor today to go over my results. Kinda scared of what will it bring but you can't change your gene pool. Have a great Tuesday everyone.
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Thank you, martaj! I think, all things considered, I've bounced back quickly from Taxol. My bloody noses are finally gone! I also have a lot more energy. The other things- nail sensitivity, lack of hair, and missing eyebrows will correct themselves in time, I guess. The weird thing I've noticed is gas and bloating after finishing Taxol. I may start a probiotic to try to get things regulated.
Today, I go in for an MRI to get a glimpse of what treatment has been able to accomplish. My MO and I can no longer feel the tumor, which is great. I hope the MRI tells us the poison cocktails did their job! It would be great news to get ahead of my girls trip tomorrow!
I am thinking about and praying for you all!
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Palmetto not being able to feel the tumor is huge... fantastic.
Dawn1970 I truly believe you will be surprised that Taxol is much easier At least that is what we found Nat took a little Pepcid for GI issues and did get some neuropathy around #10 The ice helped and hopefully that will go away eventually Nat hiked almost 4.5 miles every day AC was no fun for her but Taxol was easier by far God bless!
Thank you everyone for your prayers. We finished Taxol today!! Praise God. 11/5 is DMX. Pathology will determine what is next. One day at a time!
Blessings to everyone
J
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Palmetto not being able to feel the tumor is huge... fantastic.
Dawn1970 I truly believe you will be surprised that Taxol is much easier At least that is what we found Nat took a little Pepcid for GI issues and did get some neuropathy around #10 The ice helped and hopefully that will go away eventually Nat hiked almost 4.5 miles every day AC was no fun for her but Taxol was easier by far God bless!
Thank you everyone for your prayers. We finished Taxol today!! Praise God. 11/5 is DMX. Pathology will determine what is next. One day at a time!
Blessings to everyone
J
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Hi all - I had my first Taxol on Monday morning. It went fine except for small amount of nausea and headache on Monday. The 50mg of IV Benadryl made me "drunk" and loopy, but that wore off by Monday evening.
However, the 20mg of Decadron (steroid) they gave me to prevent an infusion reaction has completely messed with me. I slept just one hour Monday night, was wired all day yesterday, then only slept a few hours last night with the help of an Ambien (which I never take except to help get over jet-lag on trans-Pacific travels). I've slept a total of 7-8 hours in the last 58 hours. But this isn't a productive steroid high, I just feel like a wide awake, jittery zombie! I hate it.
I've called and talked to a nurse. They'll half the steroid dose next week. I guess we'll see how that goes!
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LoveMy4kids, yes, that's how they do it, for the first infusion they give you 20mg, just to make sure yo are not having a bad reaction, then they lower it to 10mg after. You could negotiate with your onc to lower it even further, maybe 8 if you do well with the 10. The first Taxol is kind of the worst, it gets better from there.
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I never really had nausea but took Zofran for a few days after treatment each time because it helped me sleep. My body seemed to adjust after a few weeks—I didn’t even get hungry after thesteroid.
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Mightlybird - thanks for the reassurance. I wasn't expecting to feel this awful. I'm also not quite 3 weeks out from surgery, so my body has been through a lot. It shouldn't be this hard for the whole 12 weeks (right?!)
Ingerp - I thought the steroid makes you want to eat, but I'm so thrown off by everything I haven't had much appetite. Everything just feels all wrong in my body. I was given 16mg Zofran as a pre-med on Monday, but it just gave me a headache and I still had nausea.
One day at a time... that's all we can do!
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Hi Guys;I had my second infusion ofTaxol on Tuesday and I've been feeling a little wobbly/woozy also my head feels like it's in space,anyone feel different after their taxol treatment?
I went to the gym for an hour yesterday and I came back feeling worse☹️.
I feel like I'm losing it
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I'll say again--I think eating a ton of protein made a huge difference for me through chemo. It even helped me when I was getting Herceptin alone. Faith--powering through at the gym really doesn't work in this situation. I'd have Taxol on Fridays, go to the gym Saturdays (thank you steroids!), maybe do a little on Sundays, but took Mondays and Tuesdays, and sometimes Wednesdays off. Back at the gym on Thursdays, so 2-3 times a week was all I did, and I *only* did a little gentle cardio. I think it's important to let your body rest as much as it needs to.
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Joining in on this thread as I start my first of 12 Taxol treatments in two weeks. I’ve got my icing supplies to ice my hands and feet. I’m really hoping that Taxol is easier on my system than the dose dense AC.
I’ve been following along on this thread for a while. It seems side effects vary from individual to individual. I’m thinking positively.
Marilyn
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Welcome, Dawn, Lovemy4kids, Faith and Marilyn! I hope you all do ok with Taxol. My SEs weren't that bad. The first and last two were the worst. I had some nausea and stomach cramps with the first. At the end my lower legs ached and ankles swelled. I was pretty fatigued too due to becoming anemic and having some other blood counts dip. I took Ativan for the first night or two after chemo to sleep. I am really hoping AC isn't too bad either!
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lovemykids,
That happened to me also, I was wired!!!! Talked to oncologist, I know longer take them after chemo. Much better. No nausea, still up very early the next day after infusion do to steriods they given you with infusions, but no more decadron!!!!! Had 10th infusion today. Marta
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I have no energy to scroll back through the Taxol posts, but I think I remember that some people experience depression, weepiness, other emotional effects at some point during their Taxol week. Anyone?
I had my first of 12 weekly Taxol infusions on Monday. Today (Saturday), I can't stop crying. Of course there are circumstances and stressors that could certainly make a person cry, but I feel especially emotionally whacked out today. Has anybody else experienced this? Does it usually happen a certain number of days after Taxol?
(If chemo day was day 1, then today is day 6. Or you could say it's 5 days after chemo. I don't know how to count it.)
This has been a really rough week. I sure hope it's not like this for 3 months.
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Love- I'm sorry your having such a rough day and week!! I experienced more emotional mood swings but for me it varied but was usually days 3 and 4 post treatment. Allow your emotions to do their thing, it's good for you mentally.
I hope everyone else is having a good week and keep up the fight to kick cancer's ass!!!🥊
-Katie💗
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