Weekly Taxol group
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believe, I had the dd of taxol and my oncologist said that for tnbc it works a little bit better. Who knows what that means. With premeds and lots of water I had no problems, except for rapid heart beat the second dd. Which they then slowed the drip and I was fine. Good luck!0 -
Last week I finished my 9th weekly taxol. In the past week or two my hair has started to grow back in. It’s definitely peach fuzz but a lot more of it than I would have expected. Also I’ve started getting some pimples. Not sure what’s going on?!? Anyone else experience this?
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Hello - I'm new here and wanted to join the party. I'm generally more of a lurker than a poster, but may find that I start posting more often once treatment starts.
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Hello everyone. I’ll be on taxol for the rest of my life or progression. I’ve had six treatments and get scanned right before Christmas after my 8th. I’ve found it fairly easy compared to AC seven years ago
Just wondering if anyone has had taste changes and how they combatted them. Mainly everything is blah or bitter. Trying to up my protein and drink drink drink.
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I am finding taxol to be pretty easy in general too. I had to skip one treatment early on because of low WBC and I'm now on a 3 week on/ one week off regime due to neuropathy.
My taste buds have been affected, too, more things taste muddy or blah. The only things that really excite my taste buds are citrus and things that are tart or vinegary. I am really pleased when something tastes like it's supposed to!!! To keep from losing more weight I eat whatever is on hand / whatever I want and often whether I'm hungry or not because my appetite is not what it used to be!
Good luck with your scans! Mine have been bumped to January since my schedule has changed. May we both continue on taxong for a long long time!
Katty
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Hello, I was recently diagnosed with Invasive Mammary Carcinoma in both breasts. Stage 2, grade 2 in November and will be having a double mastectomy, followed by Taxol for 12 weeks and Herpecin for 1 yr. Tamoxifen for 5 years. My surgery is scheduled for 12/17/20. Wondering if there is anyone who has not lost their hair on just Taxol? I see AC, not sure what that means as I am new here. Followed by Taxol hair regrows, but what about just Taxol. Debating the cold cap but do not want the expense and added time to treatments. Any suggestions welcomed as I have been googling everything.
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Mthurman68, that is a very good question. I had weekly taxol in 2012, used Penguin cold caps and lost almost no hair. I think as a general rule, hair loss from weekly taxol starts more slowly than other chemos, and some do keep a good amount of hair throughout (though with much thinning). Others lose so much that they end up shaving their heads. There’s no way of knowing ahead of time, so if you want to be sure of keeping your hair you should cold cap. Good luck with your decision
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Hi Everyone,
I just want to thank you for posting. I start 12 weeks of weekly Taxol tomorrow. It's my first step in this journey. I was diagnosed on Dec 15 and will have surgery after the Taxol (and Herceptin and Perjeta). I am also being given the Neulasta patch and using a cold cap. I'm worried about my hands and feet, but i think I am just going to focus on my head.
Thanks again for posting,
Claire
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Claire, hair loss is very rarely permanent but chemotherapy induced neuropathy can be a permanent side effect of taxane therapy. Peripheral neuropathy is potentially disabling. Many people don't ice hands and feet & have no issues but I would recommend being very alert to any small signs of it and acting on them immediately.
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Ok--will do. Yes- My doctor said to let her know as soon as i feel any numbness or change in my fingers or toes.
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Claire--just my experience with neuropathy. I did not ice and did get a bit in the bottoms of my feet. I was working out regularly then (not so much since COVID!), but two years later it's all disappeared.
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Thanks Ingerp. I only had a few minutes that day and then a few more minutes this weekend. 4 down, 8 to go!
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hi all,
I just had Taxol #7 yesterday, 5 more to go. I have a rash that is getting worse with each treatment. I do have steroid cream that takes the itch away. The rash resembles poison ivy in a way. Anyone else have this? I also notice diarrhea on day 4 of each cycle. My hair is slowly growing. Peach fuzz all over 😊 Thanks for any input.
Julie
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Julie - where is the rash if you dont mind me asking? i had a very itchy rash on the head, neck, face and some other areas. Mainly where hair follicles are but in the sensitive skin areas also. I have been given Dermol 500 to wash with and use as lotion. It really helped, its antibacterial. My rash was caused by the damaged hair follicles.
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my rash is all over - little red dots on my face, neck, arms, back and just a few on my legs. I have psoriasis and the patches of skin resemble that when it's active. So the cream I am using is mainly for psoriasis, but it does help with the itching. Doc said she may want me to be on oral steroids if it continues to worsen....and it has gotten worse with each treatment....5 more to go still. Thanks for your reply. I will look for that Dermol 500
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Definitely review with the dr before your next appointment. Now that you said it, i actually have been diagnosed with scalp psoriasis a few years back but its only been really bad that time a while ago. it may well be connected as a skin reaction. Dermol worth trying because its non steroidal and non antibiotic. it may be called differently in US (i am in UK) but can be bought without prescription, although mine was prescribed by the dr. Best of luck for the last 5.
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Hi there,
Sorry about the rash. I am going for #5 tomorrow. i hav been using wet wipes after each bathroom trip to get the she one off of the area. I also have some diarrhea at that time. I bought liquid Imodium and i take like a 1/4 th dose which has worked well for me without stopping everything entirely. I’m almost as scared of constipation as i am cancer. (Insert silly tone there). I’m definitely more tired as each week adds on.
Xoxo
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Jujumartin, I started getting a rash on my hands and lower arms from Taxol too. They added the Dexamethasone (Decadron) back to my weekly Taxol infusion and the rash nearly cleared within 1-2 days. It slowly starts to come back on my hands prior to the next infusion, but it's enough to keep it managed.
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I do get the dexamethasone before Taxol. The itching gets worse as the week goes on. The good news is that I've not had any neuropathy and my hair is slowly growing back. Peach fuzz makes me happy, good luck to us all!
Julie
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hello ladies
Im having the weekly taxol (round5) and i recently had rash on my face and the skin over my neck and shoulders is easily irritated like a burning sensation ( not red thought) just very sensitive and itchy, is this normal? Any advice
Thx
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Vee, you can get skin reaction to taxol. I had it on my face and upper chest - looked like I'd been in the sun too long, each week it started day after treatment and lasted 2-3 days. Let your oncologist know about it and definitely report if it spreads or starts really hurting or you develop more symptoms. I was told severe cases can be Stevens Johnson syndrome.
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Hi! I'm at the halfway point! I just had my 6th infusion yesterday. I also have small red bumps on my face. I went to my dermatologist just for a skin cancer screening and she said -- in my case it is Rosacea (which I've had before) that has flared up because of mask wearing. LOL if it's not one thing it's another... she gave me an ointment for it but it hasn't gone away yet--of course I suspect chemo. I'm sorry about the rashes. That would be hard for me too to have it all over. I also get the Decadron each week. Have you tried an epsom salt bath. My son would laugh at me for suggesting that. He's says I think everything can be cured by an epsom salt bath. Can't it, though? Oral steroid is not fun but maybe the solution. Let us know.
Yesterday I talked with my Oncologist about the mild nausea I cannot shake on days 3-5. I described it to her ... feeling like I had food stuck in my throat. She prescribed Prilosec and suspects it's actually acid reflux from the pre-meds and not nausea from the Taxol. She said it would take a few days to kick in. I will report back. I also got a new sleep medication called Gabapentin. I have had fitful nights of non-seep for a couple of weeks.
TMI ALERT: I'm using the cold cap and still have my hair so wasn't sure if I was actually far enough along in the treatments to start using my hair--wasn't sure if the cap was working--well the downstairs hair is leaving me quickly, so i guess the cold cap is working on the upstairs hair. Also my leg hair has stoped growing. I'm supposed to only shampoo my hair once a week the morning of chemo, so i have been shaving on that morning, too...nothing left to shave! LOL.
MORE TMI ALERT: my friend who lost her hair in chemo said the downstairs hair initially comes back as soft as rabbit fur. hilarious.
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show your MO the rash. Mine looked differently from what is usual, so made an appt with the dermatologist. Turns out my rash is psoriasis gone haywire due to the stress of chemo and the weekly shock of steroids. He gave me cream to try and said it should resolve when the chemo is done, which for me is 4 treatments left. Good luck to you!
Julie
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Hello all! I just finished up my last AC treatment! Woohooo! I am soooo excited about feeling human and being able to eat normally! I think I ate a whole pizza last night!
Now I am getting ready for 12 weeks of taxol. Dr recommended l-glutamine and icing hands/feet. I’ve been looking through this thread for what gloves and booties people found effective... but I can’t seem to locate any links.
Here’s where I’m asking for help: could y’all please post what you found effective for icing hands and feet? Links on amazon would be much appreciated!
Thanks in advance! And... stay worm during the upcoming winter weather... this weekend is gonna be extrachilly for those of us in Texas!
Bonnie
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Hello everyone!
I am starting 12 weeks Taxol and 1 year of Herceptin on March 1. I would also love recommendations for icing hands and feet. I am planning to try cold capping since my hospital offers it.
I'm 3 weeks post double-mastectomy and feeling really good in terms of recovery from the surgery but I'm so, so terrified of starting this new chemo process. Anyone else starting around the same time as me? And to those who are well into their treatments... thank you so much for your very helpful input and advice!
Sending the best possible vibes to everyone!!!!
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I finished Taxol on Dec 14th. I never iced my hands/feet but did use L-Glutamine (15g 2x/day in orange juice). I had only the slightest tingling in my fingertips near the very end and then it went away. Nothing bad at all. I also kept all my nails but a 2-3 of my fingernails have partially lifted from the nailbed. Hoping it goes away as the nails continue to grow.
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Hi Guys just a quick pop in, I finished my Taxol just under a year ago, rang the bell and all. Have been on Letrozol ever since. So far so good Oncologist thinks I have this beat. ( praying). Just some quick tips, I had almost no problems with Chemo. Did the ACT protocol. AC every 3weeks for 4 cycles than Taxol for 12 weeks every week. I think the thing that helped the most was the water I would force myself to drink. I would drink 2 Lt of water before every transfusion, and when I got home 8oz every hr till I went to sleep.(my husband would wake me up every hr till 11pm to drink), I did this only on infusion day. Also take the anti nausea meds every 6 hr for at least 2 days, you have them take them. I also iced my hands and feet. If you have a friend in the hospital or clinics see if they can get you some lab specimen bags. They have a inner pouch with a ziploc top and a open sleeve on the outside. You fill the zip part with ice and slide your hands and feet into the open part. I used these and they worked great and didn't cost a thing. If you do ice your feet wear thin socks to protect your feet, you still get the cold just not the pain of ice directly on your feet. I did have the ice directly on my hands but could move them if it got too painful. You usually are in the chair with your feet up so it's hard to remove the ice packs from your feet if they get too cold.( thus the socks) I am happy to say I had no neuropathy or nail lifting or nail bed changes. Another thing I would do was a Epsom salt soak every week usually 3 days after Taxol. I would get the lavender scented bags of Epsom salts from dollar tree. Fill up the tub and put the whole bag in and soak for at least 50 min. Put a good audio book on and just soak. Read up on what Epsom salt soaks do to detoxify your body, you will be surprised. Don't add soap till your done as it will create a barrier to stop the absorption of the minerals in the soak into your skin. I feel this also helped me a great deal.
Keep the faith sisters we've got this!!!!
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Hi Jasmin2020,
I am starting that same regimen of chemo/Herceptin on March 4, my diagnosis is similar to yours and I also already had my mastectomy on January. I am having my last tissue expander fill this week so they don’t have to be poking me with more needles than necessary while on chemo. I bought socks with ice packs on them in Amazon and my MO told me that a Vitamin B6 supplement may help with the neuropathy. I am a bit nervous about chemo but I am being as positive as I can about it, I was nervous about the mastectomy too and it wasn’t as bad as I thought it would be.
Best of luck with the treatment!
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Jasmin2020 and Shani15, I have 2 Taxols left and here are my observations.
My hospital gives me ice in the specimen bags and I have been using them. The ice is painful and I was taking Ativan to try to sleep through it, because I felt like it was worth it. I have had some nail bed pain and one toenail that looks like it may be a problem down the road, but I've gotten this far without any serious nail issues. The staff are surprised my nails look as good as they do.
Observations:
- Nose sores are no joke. Prepare for them if you can, hydrating, by using a humidifier, and using saline spray. I used the saline gel at night and it helped a lot. I have had nose sores consistently throughout chemo, with some days being worse than others.
- I followed the advice of drinking 96 or more ounces of water a day and exercising as much as I could as tactics to keep side effects at bay, and I think it worked. I am walking, running, and doing strength training, which is a good barometer for how much weaker I have gotten after each treatment.
- Constipation may have been my worst and most consistent side effect apart from the nose sores. I was terrified of overdoing it with laxatives and then being away from my house on a walk and needing a bathroom urgently during a pandemic and while I was immunocompromised, so I underdid it at first. I soon figured out the perfect balance of 2 Colace a day, later switched to a generic at twice the strength every morning.
- Lean on people who want to help. We had a meal train despite my energy level being strong enough that I could have been cooking, but we were very grateful for the food arriving on a regular schedule, almost always homemade, and suggested that the preparers give us half and keep half so that we could virtually share the meal with them. I was and still am terrified to set foot in a supermarket, so the meal train was handy for that reason. We also had friends willing to pick up and deliver odd groceries, and we started using the local milkman and pharmacy delivery service for other grocery needs, as well as amazon. This kept my husband out of grocery stores to the point of him heading out for supplies maybe every other week.
- Anemia made me get cold faster and need to bundle up more when I would go out. We also needed to re-set the house thermostat to a few degrees warmer so that I wasn't shivering all the time.
- My hair started falling out on day 23, and I had buzzed it to about 3/4" on day 19. It was a constant shedding every day, with no bald patches. By the time I got to the 10th Taxol, I was still shedding and I seriously had old man thin stubble and I took a disposable razor to it. I had stubble immediately the day after and what hair I have left continues to grow, so I'm glad I hit the reset button on it. Hair loss was a big anxiety issue for me, faced with a lot of anticipatory dread, and the mental health counselors through the hospital were helpful in this regard. By the time I got to the crossroads, I was ready for it and have been fine with it ever since. I bought a variety of fun and cheap cosplay and colored wigs from Etsy. They took about a month to arrive in some cases, so if you think you want to do that, plan for a long shipping window. I love the fun wigs more than the hand-knotted wig that insurance paid for.
- I had the odd hip pain around the 4th treatment, and some muscle soreness around the 8th treatment, but that has been mild.
- I had mild nausea mostly in the mornings, and heartburn, both starting around the 7th treatment and not lasting more than a week or two.
- If you're due to get Herceptin and they have mentioned Herceptin by name, make sure you get Herceptin! I was told that was what I was getting and evidently in a cost-cutting measure at my hospital they switched to a biosimilar in December, and administered that to me without my knowledge or informed consent, which I did not discover until after I had had 5 infusions. If you don't care, then that's fine, but a biosimilar is not a generic no matter what they tell you, and Herceptin has many more success stories and more time since FDA approval. I asked for a medical reason why this was switched, and received none, if that tells you anything. It was all cost savings, all on the drug that's supposed to cure us!
- Make the water-salt-baking soda mix to prevent mouth sores, and rinse with it and brush your teeth after each meal. My first mouth sore showed up after treatment #1 or #2 and I have only had about 4 total. I never completely lost my taste buds, but I prepared for it (and a sore mouth) by stocking up on some really bland and soft foods.
- I did not tolerate the steroids well and started off with 10mg Dex, which I got reduced to 4mg on treatment #4, and got reduced to 2mg on treatment #10. I also got switched to IV Benadryl and eliminated the Tylenol by treatment #8 (after cutting it in half by treatment #4). Never be afraid to ask for pre-med reductions. Regarding steroids, be prepared to be wide awake as if you have the worst jetlag in the world. I had a lot of mindless tv and youtube playlists created by friends, and did some 4am baking, that sort of thing. It was fun, but the emotional crash (blue mood, super grouchiness) wasn't worth it to me to have that one really productive day each week.
- I read through every single post in this massive thread, looking for more specifics on what to expect each week, and what to expect if you haven't had AC or you're not getting another chemo with Taxol, and I got some good tips, but it took hours and hours. Hopefully this helps. Feel free to ask other specifics if I haven't answered something. I did learn that we are all different in terms of diagnoses, ages, activity levels, body types, and we all react differently to Taxol, also a few people have mentioned on this thread that if you tend to tolerate this well, you are less likely to post here, and I think that is true. So far I have had very few complaints about the Taxol itself. It sucks, but it's manageable.
So, I have two left - I hope I don't eat these words about it being manageable! I think at this point I am having some endorphins activating in my body because I am elated to close this chapter on the treatment plan, so I think I'll sail through the rest of it.0 -
Hi MochiPie,
Thanks for all the advice! I did not knew about the nose sores so I’ll have saline spray ready to go and I will start looking at Etsy for some wigs, I don’t know why Etsy did not came to my mind when I was looking atwigs online a couple of days ago. I have read a couple of posts about rashes or dry skin when on Taxol, are you using any special soap or lotion for your skin?
I hope everything goes well on your two last Taxol!
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