Taxotere, Carboplatin and Herceptin
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Loriekg - yes I had sores in my mouth like canker sores. The sores in my mouth were small and not very painful but I also had two on my bottom lip. I didn't get them until a few days after the first treatment and they're almost gone now. The baking soda (1/4 tsp) and salt (1/8 tsp) in 1 cup of warm water helped sooth them. I've never had canker sores before so I'm pretty sure they were from the treatment. I have my wig too and kinda looking forward to not doing my hair every morning, but I hear my scalp might be sensitive, so it might not be as great as I think it would be. My wig's cute though (the hairdo I've always wanted - ha). My MO first told me there was only a 20% chance of loosing my hair and everyone else has told me otherwise with this regimen (including the literature). Why would he do that???
SpecialK - I will be ready with frozen peas on my next treatment.
Blownaway -- I'm curious about your screen name -- did that come about from your diagnosis? That's the way I felt: "Me???? What???" Reality sinks in pretty fast, but kind of in slow motion. Also, did you use Latisse during your treatment? I'm a regular Latisse user and feel like I might be wasting the money on it during treatment?
Loriekg - I hope you're feeling better now too. I had just Herceptin yesterday and was all wired up from the steroids last night, but feel okay today. And I've got 2 more weeks before treatment #2. Wooo hooo! (Okay, maybe that's the steroids talking)
Thanks again everyone... you're so helpful. It's hard talking to friends who treat me like "poor me," and telling me statistics and about how cancer treatment isn't like it used to be.....
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Barbara - I used Latisse on both lashes & brows during chemo and for a couple of weeks afterwards. Although they thinned some, I never completely lost my lashes or my brows.
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Thanks MinusTwo. I'll keep using it then.
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Correction. MO first time told me 40% chance to lose hair then the next time I saw him when he worked out my regime said only 20% chance I'd lose hair.
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Barbara, Unfortunately I think the risk of losing your hair is much higher than what your MO presents. My take on hair loss is this: You will likely lose your hair. If this is the worst side effect you have from chemo you'll be grateful. If you experience the harsher side effects you'll be too sick too care.
For me, hair loss was the least of my worries because the awful taste in my mouth and fatigue took precedence. I wore my wig 1 time, but found it extremely annoying, so I bought a bunch of cute scarves and hats and got lots of compliments. I stopped wearing a head cover as soon as I had a little fuzzy regrowth, and it was a kind of cool look to sport for awhile, many said I looked sexy, but I'm not keeping it that short. I lost a few eyelashes and my eyebrows thinned. I'm now 5 months post chemo and my hair is about an inch long, but really full and soft. I had it cut one time last month to even it out. The color is a beautiful silver and I'm not going back to coloring it.
Hair loss generally begins around 15 days after your first tx. I had my hair cut short right before tx, but day 15, as it started coming out in clumps, it also began to hurt when I touched it and my scalp was very sensitive. A few days later I had it buzzed and felt much relief.
Good luck to you and keep us posted on how you are doing. Sometimes you just need a place to vent and I found this forum a great place to do that. The ladies here are supportive and very knowledgeable.
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Debiann,
Thanks for your reply. Did you have Taxotere and Carboplatin every third week? Were your side effects (taste in your mouth, fatigue, etc.) worse after the second treatment than after the first?
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Barbara - thankfully as time goes on many of the details of chemo treatment get hazy. My treatments were TCH & P every 3 weeks. I never had nausea. I had horrible diarrhea. Ended up losing 60 lbs and always got extra fluids w/my infusions and in the middle of the 3 weeks. Each one of us is different.
The ladies here have some great suggestions. The best thing I found was to join a thread of ladies going through chemo right now so you can compare & share. Also I went back & read the chemo thread from a couple of months earlier. Examples from the active threads: February surgery; Winter rads; Starting chemo October 2014
This appears to be the most current chemo topic - Starting Chemo Feb 2015 https://community.breastcancer.org/forum/69/topic/827966
Also take a look at this one- Tips & a shopping list for getting through chemo https://community.breastcancer.org/forum/69/topic/706846?page=54#idx_1605
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Barbara, Yes, I had TCH every three weeks for 6tx. I have 6 more H only to go. Chemo can be cummulative, making the side effects a little worse each round. The bad taste was horrible and I so hope you skip that SE. I felt like a limp dishrag for a week each round. Getting extra fluids helped. I usually bounced back and felt good the week before tx, except for round 5. I felt so bad I was about to throw in the towel, but my MO gave me an extra week to recover and reduced the dose for the last tx.
The good news is the SE's have all resolved, hair is growing, taste buds finally back to normal and energy level almost normal ( following chemo I had mx and diep recon, so that knocked me down again). Neuropathy in my toes is just about gone. I didn't have too many nail issues, some discoloration and a ridge from each chemo round. Thats all growing out now. I did get two ingrown toenails, podiatrist said thats because chemo can make the nails curve.
During treatments I absolutely hated hearing people describe chemo as "doable". It felt very undoable. But in hindsight, I guess its a good word.
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I've just got my third cycle of TCHP. I was only nauseous a few times, but had lots of heartburn and even more diarrhea. I had to have IV drips during 4 day hospital stays in the middle of my first 2 cycles! My MO is talking about setting up some home IV drip thing this time. But that's the worst SE (dehydration), so far, at least.
My hair started falling out after 2 weeks. I still have a fuzz and most of my lashes and eyebrows, but the fuzz is still shedding, so the rest could still fall out. My nails are fogging a bit at the base, so they might do something, too. My fingertips are a bit sensitive. Sometimes the bottom of my feet are sensitive.
I also had a sensitive mouth and couldn't stand certain or most foods. Anything that looked rough or dry was bad. Strong flavors were also not welcome. Creamy soups and protein shakes were OK.
I've got a nice wig (thicker than my normal hair... and no need to worry about greys!). It's not uncomfortable to wear, but hats and scarves are still more comfortable. Still, vain enough to use the wig when I go out...!
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Barbara1954 SE can be different for everyone. I had TCH every 3 weeks. 6 TC in all. I never had any nausea. Had constipation but no diarrhea. I did have some fatigue but not too bad. Needed an afternoon nap. I did keep exercising. Day after my first chemo I was in the gym doing 70 minutes of elliptical and treadmill. Eventually I was concerned about germs so I just power walked outside even in the winter. I had gerd but I did get meds for that. I lost my hair like others but it all grew back. I had eye flickering and they watered too but more towards the latter end. My taste changes weren't too bad but I did suck on ice chips (to prevent mouth sores) during Taxotere infusion. I feel that's why my tastes changes were minimal.
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Longtimers - anyone still periodically have increased mouth sensitivity years out from TCH? I am almost 3 years PFC and find my tongue and mouth has never quite been the same. It is burned by hot foods much easier and also if I drink too many acidic drinks. It's not all the time, but it does still happen. It wasn't like this before chemo, so I'm thinking that it must have caused some kind of long term sensitivity for me. But not sure. ???
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dancetrancer my tongue has always been like that. I don't like really hot drinks or foods. Maybe that's why I don't like coffee. It might just be age related.
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That's possible Lago. Thanks
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Barbara - I just felt blownaway when I got the news - I still can hardly believe it - even after all the treatment, this can't be happening to me.I also used Latisse for years before b/c and decided not to waste my money during treatment. All my lashes fell out (brows also). Once my lashes started growing again, I started back with the Latisse on the upper lashes only (per prescription instructions). Once again I had long lashes, upper & lower. Now, all my lower lashes have fallen out AGAIN but the upper lashes are hanging in there. If I had to do it all over again, I would continue with the Latisse during treatment.
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Is Latisse something you can get at the drugstore, or does it require a Rx? I think I need some!
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Hi All!!! I had my follow up echocardiogram today and my LVEF is back up to 65!!! I kind of wonder if the tech messed up on the one that said it was 42. Anyway, I did discuss not going back on Herceptin since the study for 6mo vs 1 yr only shows a small improvement. My MO said she would leave it up to me... I kind of am now leaning on going back on it for piece of mind....to know I've done the full course of treatment. Poor nurses at the infusion center will have to try to get vein access again....been named their worst vein patient. Unfortunately 10 days of IV antiobiotics that I had to take b/c of the port infection ruined my veins!!
Latisse - for those of you using or planning to use Latisse while doing chemo...Don't waste your $$$. My best friend is a medical director at Allergan ophthalmology...she said it won't prevent you losing our eyelashes/brows. Said to wait till they fall out (usually happens at end or after chemo) then start using it for regrowth. Chemo kills cells that replicate quickly...so using Latisse which helps hair grow won't help the situation.
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loriekg - you used to need a prescription...now you can get Latisse online!
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Jennliza - sorry to disagree but Latisse was my salvation. I could stand losing my hair but could NOT stand to be w/o eyebrows. I don't use any make up and didn't want to start. I NEVER totally lost brows or lashes. My MO and my ophthalmologist both said go for it. It's expensive but was worth it to me. And yes it is RX only and of course everyone should read the side effects since we're all different.
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Not everyone loses eyebrows and eyelashes. I didn't use Latisse and I still lost only a couple lower eyelashes and my brows thinned a little. I did lose most of the hair on my head and elsewhere on my body.
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debiann - oh yes, the rest of the body. It was so nice not to have to shave my legs through out treatment.
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I did not lose all of the hair on my head - probably 70-80%, did not lose all brows, did lose all bottom lashes but kept half a dozen top lashes on each eye though not evenly spaced - and only lost them once - did not cycle, but had to shave my legs all through chemo, lost hair everywhere else. Was too nervous to use Latisse since my eyes are very light blue.
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I'm another who did not lose all eyebrows, eye lashes or hair. I lost about 50-60% of my brows and maybe 30% of my lashes. I lost most of my hair but did have some that refused to give up!
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Haven't read all the history on this board but I have a question. I met a lady who had Taxotere more than a year ago and still has a 'smell' that will not go away. Anyone with similar symptoms?
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Hope not - I can't smell anything at all, so have no way of knowing. If I sprayed perfume up my nostrils, I would not smell it. I can only taste salt, sweet & tart but cannot distinguish between different foods.
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I hope I don't smell! I don't think I do and DH hasn't said anything. Damn chemo. It does its job, but it beats us up too.
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Ok...about that smell! What kind of a smell are you talking about? I would have said "no haven't noticed anything"...but there have been a couple of times I've gotten a "whiff" of something and didn't know what it was. It was a chemical smell...almost like a faint scent of gasoline. I just thought it was the jacket I'd just put on, or something else. Now I'm wondering.....
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I definitely had a chemical smell during chemo, DH confirmed it, plus my dogs were always sniffing me, lol. I don't notice it anymore, and neither does the family, so its either gone or we got used to it.
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I assumed she meant she smells something funny but didn't necessarily think she was the one putting off the smell. I need to get more information. Now I'm curious. When I had Taxotere I was very sensitive to certain scents. I remember buying a microwave and the checkout lady's perfume was so strong it was making me sick. My sisters barely smelled her perfume.
No one ever told me I was giving off a funny smell. Guess I'm glad they didn't if I was smelly.
I always figured the changes in smell were because I lost my nose hair.
I'll check back when I get more info.
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ohio4me did your friend have radiation. I have heard that sometimes when the nodes are radiated women complain about a smell under their arm. When on chemo weird smell could be from taste buds change.
Eyelashes and brows. Both of mine thinned but I didn't start to lose them until the new ones started to grow and push them out. I was never without though.
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I didn't completely lose my eyebrows and eyelashes but they did thin. I started using Latisse after chemo and it did help for sure! I was too nervous to use it during chemo....I was already getting so many chemicals from the drugs I didn't want to add to it!!
You can get Latisse at any skin care spa place that carries it. My PS actually carries it so I get it there, no RX needed
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