Weekly Taxol group
Comments
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I gargled constantly with the Biotene mouth wash and used the Biotene toothpaste. But there's also supposed to be a home made solution you can use to gargle with that has baking soda and water I think. If you search for it on this site, you should find the formula. Gargling constantly kept the mouth sores at bay for me.
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Yes, I have three solutions I use on AC...Biotene,1/2 tsp salt with 1/2tsp baking soda mixed with water, and last but not least, my Oncologist wrote a prescription for Magic Mouthwash. This worked the best.
Failing that you need to call your Onc, as with mine, my treatment was delayed one week to avoid potential infections. My onc said my mucous linings were just too sensitive and if it continues we would have to reduce dosage.
Hope this helps...btw, I gargle continually, but the issue is our sensitivity, which is not related to the amount we gargle.
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Elizabeth- I have severe mouth sores. Gargling with salt water, bicarbonate or regular magic mouth wash didn't work. Now I am on to what they call level 2 mouthwash. It is called caracara and has aloe Vera. I know leaves a white line on my teeth but I feel this has helped more than others. Only problem my teeth have become mire sensitive. Looks like you and I are more susceptible to these mouth/GI issues.
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I agree, Hopeful. None of those things have worked. I THINK, not sure, but THINK I might have gained some ground today. I have been home all day laying around, so I have really been able to focus. I tried the normal things the last number of days, but today I have been treating it like yeast,which I believe it to be, or at least a ph imbalance of some sort. I have been drinking tons of water and using a product I have used for thrush before called Nutrition Now (brand) Yeast Defense. It has caprilyc acid and garlic and other stuff in a powder capsule form. I have been taking a capsule apart and letting dissolve in my mouth (YUK!). Then not drinking for about 20 minutes. I have done this about 5 times today and I think they are getting better every hour. I will let you know in a few. I know it is weird.
Do you also kinda feel it in your throat? That is what gave me the hint I might want to treat it like a digestive issue and get the stuff right on my mucous membranes. I also notice I have numbing/tingling in my face at the same time,which makes sense in a systemic sort of way.
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hopeful, I just got up from my nap and moved around and I am about 60% better. Which is HUGE! feel like I can swallow and eat something.
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Elizabeth- Glad to know that helped. I just noticed autocorrect made a change. The mouthwash I use is carafate.
I don't have the numbness. I used to have throat issues withAC, now it is just mouth sores. But I agree it is definitely systemic mucous membrane problems.0 -
Hi Same for me--3rd of weekly taxol/ herceptin finished. I do have fatigue and loss of appetite but also I have been getting lower bowel cramping for hours after eating. I go to move my bowels up to 10 times and while it is not diarrhea and it is not constipation it is certainly not normal bowel movements. Sorry if this is a gross conversation but I am really worried because now I am starting to think I have colon cancer or something. The cramping just pops up at anytime--sometimes I wake up with it--and I have to sit on the toilet with painful bowel cramping while I have 3-6 bowel movements. I have never had anything like it so I don't know what to do to fix it or relieve it...Of course, my onc doesn't have a clue--just thinks its a SE of the taxol...
Did you have anything like it?
Thanks Carol
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I have a question about, what shall we call it? Nocturnal incontinence? Treatment protocol is Week #1 Zometa, Taxol, and Avastin, Week #2 Taxol, Week #3 Taxol & Avastin, Week #4 free! (yah!). We just finished treatment #6 of 18. On the second night post treatment with Taxol, my partner experiences a loss of bladder control in her sleep. It's only at night and it's true that she tries to drink 2 liters per day but stops at 6pm and empties the bladder before retiring. Has anyone else experienced this problem? If so, is it the Taxol?
Thanks,
Ginna
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I have only had two weekly infusions so far and side effects so far are minimal compared to A/C. I am very dizzy and tired on the first day then I feel ok except for swamp mouth for a day or two and loose bowel movements. Yesterday noticed a tiny drop of blood when blowing my nose but I had that all through A/C. Also I have more energy than I did on A/C. But it is still early in my course so I just have to see how it goes. I am on weekly for three weeks then one week off for a total of six months so I have a long way to go still. I am doing the cold cap this time around so hopefully I will get to keep the two inches of hair I have back. But side effects aside, my tumor is visible now, it has broken through the skin and with only two Taxol infusions so far I can see with my eyes that it is much smaller already and the little cauliflower nodules on it are gone and a scab is starting to form!
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I had my second Taxol on Thursday. So far no side effects at all. I did start taking L-Carnitine for the neuropathy, L-Lysine for the mouth sores and L-Glutamine for stomach problems. Hopefully these will help prevent any side effects.
Elizabeth thanks for the info on the Nutrition Now. I am going to make sure I have some on hand just in case.
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Carol and Gina- haven't had those systems, although I do feel like both bladder and bowel movements are a little less controlled (or in some cases constipated) after I started chemo.
Elizabeth- hope you are feeling better now.
Shoah and Lola- glad SE aren't that bad.
9 down 3 more to go. Still fatigue is my biggest issue. But that's because my Hb and RBC are very low. Looks like I will need one more transfusion before I am done.0 -
TOMORROW IS MY LAST CHEMO/TAXOL!!!
scardeycatwoman; All I can tell you about your post is that many of us have intestinal cramping on Taxol...my oncologist suggested I treat it like heartburn and I started taking Zantac. I think it helped, something did. I am going to start taking it on day 3 and see if that horrible cramping is deterred.
Hopeful, that Nutrition Now Yeast Defense worked wonders but was a full day of work. I will ask my oncologist about carafate and take her the Nutrition Now.
Will be letting you know how I am doing a few days from now when steroids wear off. Or maybe I will just ring the damn bell tomorrow on steroids!
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BOO HISS, I was not able to have my last Taxol today due to neuropathy. I go back next Tues to determine if they will do a redused dose or no dose at all. This mucks up my carefully constructed plans for a few weeks from now when I would have minimal SE. Oh well, my doctor said they do not want to do harm. So it is as it is.
ROBO47 I have had nuelasta the day after as part of my Taxol. Sorry to hear of your difficulties...
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10 down 2 more to go.
Elizabeth- sorry to hear you couldn't be done. Hang in there, reduced dose probably means less SE.
robo- sorry to hear about your hair. I don't need Neulesta as I am doing weekly taxol. but I have absolutely no hair growth while everyone less has hir growing while on taxol. I a m worried I may end up having the same issue a s you.0 -
no hair here and on my last taxol. Not worried.
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Elizebeth- thanks for posting on the hair issues. I am on steroid high today. This will contribute less towards my worries when I stay awake at 4 am:)
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I have started with Taxol and lost my hair on Day 19. Don't know if that means anything for you guys.
Robo - is that a side effect with Taxotere? I've not heard of that one.
Hope everyone has a good week.....
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Hello Ladies! Im did AC now on weekly taxol 6 down and 6 to go. I actually asked my MO yesterday whats the difference between DD and the weekly dose. He said the SE with DD taxol are intense and no different in outcome. He use to give DD but stopped. Patients experienced mouth sores, severe neuropathy, lost eye lashes and eye brows, drop in WBC"s ect. I havent had any issues with weekly taxol at all. I was never completly bald with AC had peach fuzz at the end of AC and more growing back on taxol. My WBC"s never dropped where i needed neulesta on either drug. My AC was every 2 weeks instead of every 3 weeks. I think the MO should tell patients this and give them a choice. Im sorry to hear about the SE everyone is having but just keep telling yourself its temporary and a path you have to walk for a short time in your life.
They encouarge getting out and walking but who can do this when the SE are so severe. I walk over 3 miles a day in 45 minutes everyday except tuesday my chemo day. Not because im too tired its just too hot! I wake up at 5:30am and leave at 6:15am back home by 7am. I use Map My Walk App, free and wonderful to keep track and show your progress. My daughter walks with me which helps because sometimes im just so sleepy but she wakes me up and make sure i walk. Having a walking buddy helps so much, keeps you motivated.
Not sure how much my insurence is being charged for my Taxol but i have to pay my co pay with every treatment. So having DD taxol would be cheaper since it would have been every 3 weeks but im not complaining.
Good Luck to All!
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had Taxol 5 of 12 on Monday- the bone pain is worse every day gradually, and the neuropathy really started in today.
not bad- but it's starting.
Otherwise- alright, my nails are starting to change. and ache a little.eyelashes keep falling out.
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Robo, thinking of you as you adjust to this news. wishing you peace soon. This whole breast cancer thing is so weird.
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Perhaps I should have said Chemotherapy is weird?
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Mgd- glad to hear you are having minimal SE. I think it is important for people with minimal SE to post as mostly people who have issues are the ones posting. I do think the majority on weekly do say that they have minimal SE. For me the biggest issue is the drop in Hb and RBC. I used to walk an hour on most days with AC, but now my MO has asked to rest as much as possible due to the fatigue. Being active definitely keeps your mind off the SE and cancer.
Nails are mostly half way lifted but haven't fallen off. Two more weeks of this. Good news is that by day 6 I am back to being fine so I am hoping Recovery PFC should not be too long.
Didn't need transfusion this week. So looks like it will be next week. 2 more weeks to go for me. Can't wait to be done.
Elizabeth- I am sure you are excited about next week as that will be it. Yeah I am excited for you.
Mandala- next week is half way!0 -
Hi ladies, I am 8 weeks post chemo. I am still growing back the eyebrows and lashes and as some of you are finding they didnt fall out until my last treatment. but it is coming back. Luckily alopeicia is temporary for almost all, it is very rare to not have the hair grow back. Robo, so sorrry to hear that you are having trouble with it after taxotere. I have no idea why they pick taxotere over taxol or vice versa. Its probably subtle reasons or preferences that drive those choices for you doctors sometimes.
I never needed neulasta on taxol and my blood counts stayed steady the whole time fortunately. I had normal hemoglobin counts and my white counts were only mildly below normal. I got hair growth on taxol starting around the 6 or 7th treatment, but had lost 90+ percent of it on the AC that i did before the taxol. But a lot of people lose hair on taxol and plenty dont grow any while on it.
Mandala sorry to hear you are having so much trouble with taxol too. I got mild neuropathy after the 10th treatment but it only lasted a couple of days after each treatment and is completly gone within days of the last treatment.
I never got any pain from it at all. I walked 3+ miles a day when I could and I think it helped with the side effects greatly. That and drinking large amounts of water.
Elizabeth good luck on your last treatment next week or congratulations if you are done! Either way you are almost there.
I just like to check in and encourage you all, my side effects were really very minimal with taxol and i hope that gives some of you just starting this journey hope.
I am however about to lose my great toenail. I lost the left one in the middle of taxol treatments and thought i was home free. but the right one isnt really attached to me now. I just didnt realize it until i took the nail polish off. I am not going to mess with it though. It looks like it is already partially growing back too.
All this will end! Good luck ladies!
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I just had my third treatment this week. Still no side effects at all. I feel really good. I have not lost my eyebrows or eye lashes yet and no fatigue. I still have all my finger nails and toe nails. I have painted them a sparkly black. Hope that it helps.
My hair dresser told me to get bee pollen shampoo. Some of her cancer clients have used it and have experienced faster hair growth. I bought some this week and hope to see some hair growth. I figured it couldn't hurt to try it.
Good luck to you all and have a great weekend!!!!!
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I'm finding my eyebrows falling out- yet on my head and where eyebrows have fallen out a while ago- I am getting a very light fuzz. it's white. So weird. lol.
My nail beds are turning purple too
not sure why it upsets me so much- but i just painted them with massive sparkles and it's better I don't see them for a while.
Taxol 6 Monday
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Hair is all gone. My scalp is very itchy with many red spots on back of scalp. Having 6th dose of Taxol on Monday. Still have nails and they are not discolored as yet. Also still have eyelashes and eyebrows but haven't seen any new eyebrow growth for weeks. Marianne
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Has anyone had it where you can't keep anything down?
Maybe it was the cookie dough i stupidly ate yesterday- but I woke up this morning with one eye swollen and oozy (this happened with my other eye a few weeks ago) - a terrible headache and sweating like crazy.
Then I threw up and I can't keep anything down.
Coffee and water is behaving for now- but the sweating is gross- I think I've taken about 6 showers since 6am this morning.
I feel like crap. and it arrives in waves.
I wonder if it's the cookie dough, or just the Taxol's cumulative effect.
Here's another bizarre thing too- My tumor is right behind the nipple- I don't feel it today. And I don't know where it went. lol.
Axilla is still nice and large though.
Taxol #6 tomorrow.0 -
Mandala- wow... Hope you feel better. Havent had that SE but do have a lot of night sweats. My eyes tear a lot and I was asked to use over the counter tear drops like blink tears. That helps a lot.
Marriane I got a few red spots on my hand and my nurse askede to call her if it got worse, but it got better.
Half way through for you both yeah.
11 for me this week.0 -
Hello everyone,
I just though i'd do an update on the side effects my mom has been having, in case it might help anyone else on here.
She'll be getting Taxol #5 this week. So far, she's been going through:
- alot of tiredness and dizziness, on the 1st day of taxol
- body aches, weakness and joint pains, more so around the 3rd - 5th days , but managable w. rest.
- last week after the 4th Taxol she had quite a sore throat and heart burn. After drinking lots of water, and after antacids it's alot better.
- Her bowel movements varies between constipation on some days, normal on others, and 4-6 movements a day ( not diarrhea, but definately not normal stool either. Sorry if this yucky.) She does get stomach aches on and off. Mostly on the first 2 days.
- Hair started to fall off rather quickly; almost all at once, after the 3rd Taxol. She looks really cool w. the grey fuzz, like a hip mom
Her head does get itchy and she gets red spots on it; I noticed someone else had the same too? - Taste changes. Everythign tastes sort of bland? I wonder if that goes away once the chemo's over?
- Numbness in her finger tips and toes, started after taxol #3. I'm really hoping and praying that it dosn't get worse. She's diabetic too, but never had neuropathy before. I read that sometimes the neuropathy is irreversible. the ones who've had it and taken glutamine, does it really help? i asked the oncologist about it and she said she hasn't seen it help any of her patients. :S
- Tiny nose bleeds. Should we be worried about those?
Oh and the mouth sores, she had them, but nothing major, The baking soda and water gargles are very helpful. I also got her an extra soft tooth brush and a sensitive tooth paste w. fluoride. I make sure she gargles often.
That's about it so far. I'm hoping no new side effects come up. Her white cell count is stable and normal thus far. Her Hemoglobin and Red blood cell count is slightly below normal- probably contributes to the tiredness and weakness.
I wonder if all of you take your medication everyday? the ones prescribed for the stomach irritation and nausea, and Diclofenac? My mom dosn't. She never had any nausea, so far, thank goodness. Just wondering if it's a must to take them. She dosn't take the stomach irritation one everyday; just when she has it.
Also, I meant to ask earlier, what is this steroid high that you guys talk about?
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Hi,
I will be having week 5 of Taxol today. I am two weeks behind on that because my Liver enzymes were up for two weeks and I couldn't get it. I am on week 8 of Cisplatin. I do get heartburn from the Taxol- Pepcid AC works great. I also get bouts of diarrhea.
I lost my hair on day 19. Still have eyebrows and lashes. I am the one who has a very itchy head with red spots. My taste bubs are ok so far. I have had some neuropathy in my finger tips.
I have had several small nose bleeds. Also had some mouth sores but they are gone now. I used Magic mouthwash and Nystatin swish and swallow. These are both Prescriptions and work awesome. The worst side effect of all is extreme fatigue.
I hope this helps. Hugs to you and your Mom. Marianne
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