Weekly Taxol group
Comments
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HausFrau,
My nutritionist said 15mg, twice a day for 4 days after day of treatment. I bought these packets off amazon bc they're pre measured. They're e pensive but I couldn't find tins with the same mg as the packets and my nutritionist said you have to be careful about that cause then you may have to have more to get enough. The powder is flavorless, but annoying to eat bc it makes it so grainy. Good luck!
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Zoziana, thanks for the advice! I am thinking surgery can't possibly be as bad as chemo, and as you say, at least with surgery you get better every day afterward. I am having a double also, but the second breast is getting a few months' reprieve and will be done at the same time as DIEP reconstruction, after rads.
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Hausfrau - what OAJ2013 said, except it's 15 grams twice a day (not mg). It's a lot of powder! I got some of those packets from my chemo nurse to try, but when I had used them all up I bought a tub of the powder from GNC. I calculated that 15 grams was about a heaping tablespoon (if I'm remembering correctly).
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I have the 5000mg (1 heaping teaspoon from GNC) powder. Which is 5grams according to sales girl at GNC. So then 3 tsp ....gotcha
I wanted the chewables but they were out and I didn't want to wait. So will finish this gritty powder and then if necessary order the chews from Amazon.
Thanks so much ladies! I was reading the side effects and usage for the Neurontin and would prefer to avoid if I can
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Patin, thanks for correcting what I said! Baby and chemo brain over here! Hahahah
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Zoziana, I have the red heels too. My right one seems to be sore sometimes, but it is more like a bruised bone pain.
My hives are gone, except for on my face. The dermatologist thinks it could have been from all the supplements I was taking. She told me to stop everything, even the neupogen! Now I need somebody to tell me whether to take my three doses after my 6th taxol on Thursday.
I must say though, the nosebleeds I was having pretty much cleared up with the week off of taxol
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Today I had my eighth taxol treatment. No more rash on my knuckles or head. Got two prescriptions for that and it cleared up in a week or so. I can't sleep the first night after Taxol, as you can see it's 4:45 am. I had my treatment today at 1:30. I'm taking my anxiety drug at night now to help me fall asleep but on these days, it doesn't help much. After I finish Taxol at the end of June I will start right up with AC. I haven't heard much on here about this treatment. My oncologist told me that it will be harder than taxol. Can anyone tell me your experiences with AC. Maybe there is a different discussion board I need to look for.
Thanks,
MWR
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Mwr,
I started an AC thread. There are only a few of us on there, but I think there might be a few more of us on the May 2016. Check out both of them. I just finished my third round of AC, and I e been blessed with my biggest SE being fatigue. I have slight nauseous the day of treatment but nothing too severe. And when I stay up on all my medications they prescribed I have no nausea. I can send my list of what I take if you're interested to compare. I rinse my mouth religiously with the water, salt, baking soda and so far I've had no mouth sores. Other SE are hair loss, funny taste in mouth, heartburn, and dry eyes all of these I can handle. They're a nuisance but not unbareable. I sometime am wide awake at night like you, but I have a 6 month old and 3 year old that wake me up, so that may be why I can't fall back asleep right away. Take a look at the two boards I mentioned. Other woman have posted their SEs and how to cope. Prayers to you
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MWR, I have kind of blocked out my memories of AC, but I think my biggest SE was constipation. Be prepared for that! I took stool softeners daily, as well as Senakot. I had to have Neulasta shots, and got achy from that two days later for 48 hours. I didn't feel great for the first week, but wasn't nauseous or anything. The second week was okay, and I got a third week, during which I felt normal.
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On to Taxol #5- took it down 10% due to some Neuropathy, and it has helped very much. Steroid's also cut in half and doing just fine there. Biggest complaint has been bloody noses and some fatigue, but still able to work out at least 3 times a week. Shaved my head yesterday, just could not take the shedding anymore. I did get a wig but not sure how much I will wear it. I hope everyone had a wonderful long weekend!
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Hi ladies, I Had #5 on Tuesday. I wonder when do you start loosing hair? I am doing cold caps and see a few hairs fall here and there but nothing major yet. I wonder is it because cold caps work or because it is still too early? I see this week, my bikini area a few hair I had left after laser gone. Not sure about undearm... It's shaved, so hard to tell now....
Please share your experience when is the hair loss started for you?
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Thanks so much for posting those icing on hands and feet photos. I reallly like to get a visual. I guess this is the way the chemo nurses suggested it? I just bought a cooler and bags etc as apprently my facility doesn't have enough ice! (WTF?) Anyway, thank to all for the posting the icing an supplement information here, as I probably wouldn't be getting it any other way. Ellie
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MWR good luck with AC yes its usually harder than Taxol. I had 4 rounds (in every 3 weeks before Taxol) and it was tough. For me the worst was horrible nausea and weakness. I lost my hair after two weeks from the first AC. The 1st weeks were the worst, second was ok and the third was like normally, those were the best without SEs. I agree with OAJ2013 rinse your mouth regularly with baking soda or salty water it helps preventing ulcers. Praying for you
Viktoryak I had Taxol 8 on Monday and my hair that I lost with AC is still growing back. It already seems like a proper hair and appr 1cm long:) I think its possible to keep ur hair with Taxol however Ive heard that sometimes people loose it after #6-8. I never used any cold cap or icing. Also hair is growing back for me everywhere
I had to shave my legs just recently lol lolI had to have one week break after #6 coz Taxol caused some heart pain and MO wanted me to stay in Hospital to check my heart with a 24 hours monitoring. Luckily my heart is ok but MO decided on a week break. Since then I havent had any issues and I will have #9 next week:)
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Victoryak: I think it is pretty variable, but you may be doing really well! I am doing #6 tomorrow, and while the hair isn't gone, it is super, super thin and you can see pale scalp (I am white) which I imagine would look worse if I wasn't blonde, because it is hard to see on me. Hair has been shedding tons coming out for at least 2 solid weeks now. Eyebrows are thinner and lashes too, but still there...but I hear they can stick around and then disappear even after the last Taxol treatment. Likewise hair loss is variable in terms of timing.
LoveMyVizsla (as you experienced) and anyone else with Red heels or soles of feet, or red palms:
The side effect I am experiencing from Taxol, is, per my MO, indeed seems to be Hand and Foot syndrome, a side effect seen in a variety of chemos but not Taxol typically at all. Mine is considered mild so far: hotness, a bone-type pain (I do have to get off my feet; it hurts, and some mild swelling. So far, no blistering and skin ulcerations--I pray that doesn't happen!
She prescribed a urea and alpha hydroxy acid based cream, and told me to take shorter walks. It is interesting: I realize now that the pattern this week was that the day after I did a fast, hard hill hike (around 4.4 miles, straight uphill and then down), I get the hot painful red heels. This happened earlier this week and is happening now.
Apparently it comes from the chemo leaking out through your blood vessels, and then sweating onto your skin ,and then penetrating back into the heel area which is basically some sort of weird skin composition that makes it a perfect place for the chemo to do its now external-migrating-inwards damage. Ugh. Here we are trying to stay healthy and fight cancer with exercise and BOOM!
In some chemos, 80% of the patients get this effect, but basically my MO has never heard of it with Taxol but thinks that is what I am experiencing, regardless.
The only thing that really works is: 1) not walk or put any pressure on feet or palms of hands (I don't have it there, but I don't do heavy pressure-inducing hand labor like wielding a hammer); or 2)some magic cream you can only get in Europe which basically has nanoparticles of massive antioxidants like green tea and coffee in it, and this helps neutralize the damage the chemo will do to the skin; or, finally 3) Reducing dose or taking a break from chemo.. You can't take the antioxidants systemically because then of course they will reduce the efficacy of the chemo killing off the cancer cells inside.
That said, I have been icing my toes and front of feet, and hands (front and back) and my hands and the top soles of feet have none of this Hand/Foot problem; only my heels do. So I am going to ice my feet tomorrow in the back, too; it can't hurt . But I think I am going to have to cut down on my hikes, too.:(
So, that is the story for those who may want to know about hand and foot. There is an article about it on this site, but it doesn't mention it can happen with Taxol. Who knows? Maybe Vizsla and I are the first!
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not on taxol but on taxotere, today is my last treatment, This is what my hospital provides for icing feet and hands. Does anyone use the same ones? Did they work for you? So far no problems with nail
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I had my first taxol on Monday. It's day five and I have had a slightly elevated temperature (hovering around the low-mid 37C - around 99F). Been feeling generally exhausted, and aching legs and a wicked headache.
All three of my kids have been sick the last week, with two different things, one involving high temps.
I'm not sure whether this is just side effects or I've got what the kids have. 38 degrees is the magic number to send me up to hospital. I think I'll take some codeine before bed to get a good nights sleep. This is tricky.0 -
Does Taxol affect your taste buds like AC dose dense
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OAJ2013: hi! I am on day 4 after 2nd round of taxol. (I will follow 12 weekly taxol rounds with A/C.) I have not noticeds taste or smell difference. I have been rinsing regularly with the salt/baking soda water and using dry mouth rinse and drops also. I have more mouth tenderness yesterday & today, but I don't think sores yet. really being diligent to keep my mouth healthy. my biggest problem has been reflux and constipation. Also finger soreness/achy/tingly and some soreness on my feet too.
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Hi ladies,
Just wanted to cheer you all on, Chemo is hard and so many variables on side effects. I just want everyone to know that it will get better. I'm over a year out from chemo (AC then Taxol) and only lingering SE is some mild neuropathy in the form of numbness but it is improving and can improve up to two years after treatment. I did ice using the booties and mittens for a study (not the same ones pictured above but same idea). MO said most of the study participants didn't have any. But I did keep all my toe and fingernails with some discoloration. The thing with Taxol is that no one seems to consider the weekly nature and that it is 12 weeks long and that is a long time. With AC, you felt crappy for a week then OK for a week. I did take a one week break at Christmas from Taxol. I also had a weird SE with Taxol that no one has seen before, I developed cysts in my armpits that got infected and I was on and off anti-biotics for about 6 weeks. MJS
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I just wanted to echo what MJS1266 said....and cheer you all on also. I read your posts and I remember how miserable I was on the Taxol. I am not quite 3 months PFC and (now that we are treating the Ulcerative Colitis) I am feeling so much better. There is an end to this and you will feel better. The only things that are still bothering me is the neuropathy and I still have some of the metallic taste going on. I'm able to eat more and it is tasting better, just not quite right yet. The neuropathy is so annoying. It's worse in my feet and I have to be careful walking and especially on stairs. It makes my legs very weak and I really struggle going up the stairs. Hang in there....better days are coming.
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MJS126 and NCSue927: I really appreciate your cheering us on and sharing that Taxol wasn't a walk in the park for you. It seems to be for many people, and while I am sure they are sharing with others to help those going forward with Taxol, it doesn't help me and can give people a false expectation of having no problems.
I see so many posts (mostly in other groups on this site) saying how it is so much easier than AC, etc. It makes it hard for me to even read some of these forums at times because a few folks are always telling others how "easy" Taxol is compared to their AC or whatever. Part of that may be that they are not on weekly Taxol but only every 3 weeks or so. Part may be it simply is easier for them, and that is great. Every body is different.
And for them it probably is. But not for some of us. So thank you for sharing your stories.I would take the "so tired I can't exercise" or "metallic taste " and nausea (I get that anyway from Taxol and drugs can solve that problem) any day over my diarrhea and especially now my hand/foot syndrome which literally has me basically bedridden or in a wheelchair for the next 8 weeks and for which there is no way to prevent it short of stopping or skipping chemo doses which we are trying to avoid doing. Thus I was ordered off my feet except for minor household walking. And of course, they are terribly painful--a deep, bone type pain and a surface burning hot pain, if I walk too much...I just am trying to avoid the blisters and ulcers and infection now!
I realize it is temporary, but this is a big change in my heretofore physically active lifestyle, even during chemo , and it is hard for me as the hikes and walks have been keeping my attitude positive, and have been the high point of my days on chemo. So I am retooling my thinking and figuring out something else to keep me mentally and physically fit. Sometimes I just get tired of hearing Taxol is so easy...
So..thank you again. I really appreciate your support from a year or so out on the horizon.
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Thank you all for sharing your experiences both good and not so good on this thread - I start weekly TH on the 15th and you have helped me prepare. Those mittens and slippers posted by KonaKona look awesome - I'm going to try and MacGuyver something like that for my first round and if they don't work well I'll order some from Amazon:)
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Zoziana, girlfriend, I am soooo, sorry you are having such a terrible time with taxol. I am on weekly too, and I think its the unrelenting weekly dose-up, there isn't a down week. I have had opposite gut issue from you, terrible reflux and constipation. Its aweful to teel like I am gonna turn myself inside out in order to empty my bowels. (oh, and just to be mean, I had one or two days randomly of diarrhea.). I remembered to ice my hands last week, and my fingers didn't hurt as much, but my feet feel like someone has been whacking on them. I am hoping to not have it progress.... and it took me 3 days to do my part of the budget paying bills because my head has been swimming the last 3 days. AAARgh, its only round 2 week.
POISON, we are taking poison to kill the cancer seeds. that is YUCK all the way around. I wish I lived closer, I would walk with you and push a wheelchair. Maybe that's something you can recruit someone to do for you, is help with excercise. Maybe chair yoga? There are a bunch of YMCA's which offer free cancer yoga classes. Maybe someone can drive you....not trying to fix it for you, or minimize it, but find a way to get outside and get around, even if it doesn't feel like excercising, because It will HELP you mentally, and that is 3/4 of this battle. I will be praying for you, that your SE's get no worse, if not better. and that somehow you can find a way to be active. Blessings, gotta head to sleep (before the premed steroids tomorrow robs me of sleeping, grrr).
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I'm on week 12 of Taxol after 4 biweekly AC. Had Carboplatin every 4th week. Lost all my hair, everywhere, but it is slowly starting to pop out again....very, very, very slowly.
Was extremely fatigued until about 3ish weeks ago. No neuropathy yet, hoping for none. Eyes are constantly bothered, really miss my eyelashes. Had the flushed face well into chemo, that too has disappeared. My appetite has returned and food tastes much better. Had one beer Saturday and had a stomach ache so no more of that! Have lost 45 pounds but have leveled off, now its going to be healthy weight loss not chemo induced. The only thing my once wanted me to take was D3. I've also been taking a multivitamin as well since back when I was sick for aonth with a really bad cough cold in February. Thought I was dying then it was horrid. I also had to skip several taxol because of very (sometimes very very) low counts. Also had one blood transfusion, two bags, felt like a vampire. But, have felt great since. I did start taking CBD Oil at my husbands insistence, and we believe it is helping tremendously. I will continue with it long after this is all over. My onc was not opposed to me taking it except during chemo which we believe is because he wanted a sterile petri dish. My husband is all about "getting edges". I'm about feeling good again. And I'm not a petri dish. IBC, TN, BRCA2+, yes, no petri.
Now my sleep is normal, I can actually get out and walk distances, my attitude is improved. I am very ready to be done with chemo and move in. I do still have 4 doses to go. Its been lowered some and Carbo stopped because of my low counts.
Hang in there for those just starting or newer. There is a light at the end of the chemo tunnel. Next up surgery, now that scares me. I'm a pain baby, and absolutely hate anesthesia.
Thank God its Summer and I have a great support system.
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Wanted to check in with the Weekly Taxol crowd. I have not posted in a several weeks. I guess I just wanted to see how my experience would go before doing that. Tomorrow I will take round seven of the twelve. Although very sparse, I still have some hair on my head. I have had random hair on my legs and in my armpits grow back,. Still have my eylelashes and brows. My symptoms have been minimal. This past week was the worst (which is a cake walk compared to what some of you are going through). A little numbness in left foot, fatigue and a few bouts with my stomach. I have not experienced any nausea and feel extremely lucky for that. I do try to walk and hydrate a lo. The one thing that is in the forefront for me is what I have been told is situational depression/anxiety. Kind of lost my zest a little and struggle to get the joy out of all the beautiful things around me. Of course I understand these feelings are very normal for us going through this experience. For me, it is just catching up with me. So my post is to let you all know that I think about all the women going through this BULLS....T everyday and my heart aches for all of you. Although I don't know you, I am on your side and want all of you to do well. When you are thrown in the pit of a fire and you manage to walk through it, it is still going to hurt for a long time. Be good to yourself.
DX 2-11-16 DCIS/IDC Stage 1a Grade 2 4mm ER+/PR+/HER2+
2-18-16 Lumpectomy Downgraded to Stage 0 DCIS
3-15-16 Bi-Lateral Mastectomy with Tissue Expander Placement in both
4-25-16 Taxol + Herceptin
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I've finished my 5th weekly taxol treatment. 7 more to go! The first 3 nights after treatment I don't sleep well but have tons of energy during the day. On days 4, 5 and 6 I tend to be more fatigued but sleep really well at night. My appetite is good and my taste is back for most everything! I stay active and try to walk everyday which helps with the fatigue. I had to skip one treatment because of low white blood cell count. I've been trying to get more rest and stay out of crowds. I lost my eyelashes and eye brows on Taxol. I had kept them all through the AC treatments even though I had lost my hair. I've learned to use eye makeup so it's not noticeable. I have a really nice wig that looks just like my hair. For the most part I'm feeling pretty good with the treatments.
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Labscientist: Thank you for your kind words. Your GI effects are not pleasant either; have you talked to your MO about taking Pepcid and/or Prilosec or a prescription version, Protnoix? I had horrible GI effects from steroids in the first round and was given both Pepcid and the Prilosec to take (at double dose!) at the same time; they work by different mechanisms. And was allowed Tums for any breakthrough. It did work...heartburn and reflux are very painful.
Chapgonzo: Glad to hear you are making your way through treatment. We are thinking of you, too! It is easy to get down about any or all of this, and I constantly remind myself of the good in the everyday, and try to appreciate a bit of beauty, and to do or say something kind for someone every day, even if only via text. This really helps lift my spirits each time.
I have had this bad foot problem, as some of you know (hand-foot syndrome, not the neuropathy), and have been restricted on walking other than around the house. This was very discouraging, as I had been so proud of my hikes and walks for exercise--and they were essential to my mental health. But I got clearance to swim from my surgeon (I had the double mx and some nodes Mar. 17) and MO (make sure pool is clean and treated), so today, I swam! I was really worried about whether I could do it, what mobility I would have , etc. And though I was slow as a snail, I did not sink and made it for 1000 yards, half swimming and half kicking. I also wore the world's goofiest swim outfit to protect me from the sun as my skin has gotten super chemo sensitive and I'm already super fair...it was spandex swim pants and a mock turtleneck swim shirt, and, of course, my cap to cover my partly bald head! What a sight ! But I didn't care and it was absolutely fabulous. I even passed the 90 year old guy swimming next to me!
Thanks to all of you ladies for being here; just knowing you are is such a support when things get tough! And when I try something like swimming today, I feel I am representing all of us out there in our fight for health and enjoying life!
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Zoziana: You have a beautiful spirit. Have been thinking about you being stuck in a wheelchair. Glad you figured out a way to free yourself. You are inspiring!!
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Katjadvm: Thank you! I must say I haven't braved the wheelchair yet, other than at the medical center; I just haven't gone anywhere. Today was my first outing, to the pool, and my husband dropped me off right at the door and I was already dressed to swim.
But, this coming weekend or week, if I feel well enough, my daughter will be home from college on a visit, and we had planned to visit the newly reopened SF Museum of Modern Art. That will be my first wheelchair outing, but with her pushing me, I am sure I can do it! Life must go on...and we must enjoy the things we can, as much as we can. I think that's the lesson I'm supposed to be getting from all of this?
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