Weekly Taxol group
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shani15,
I had a rash on the back of my hands after Taxol #2, and bought a big tub of Aquaphor. Never had additional rashes or dry skin,other than normal winter dryness so I barely used any! I did put some in my nasal passages a few times.
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Shani15,
I have 2 wigs to give away. I can message you with pics if you are interested. One is blond and short, one is longer ( just past shoulder) and light brown with caramel highlights.Julie
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MochiPie- That’s good to know, I do have some Aquaphor at home in case I need it.
Jujumartin- Thank you, yes that’s very kind.
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Mochi-Pie thank you so much for all this advice!!! Really puts my mind at ease as I have been increasingly anxious about starting treatment. I am so worried about how my body will respond. I have a panic disorder so it will be challenging for me to distinguish what will be real physical effects and what will be my own panic about them. I also still have the port procedure ahead of me which I know is not a big deal but somehow everything that is “new" has me so scared these days.
My oncologist recommended these socks that take ice packs in them to help prevent neuropathy, which she says I can use on my hands too. They are available on Amazon. I think I will try them: https://www.amazon.com/dp/B003L4WOKG/ref=cm_sw_r_cp_api_glt_fabc_2JJDVG30E5R5KTY9WVRE?_encoding=UTF8&psc=1
They already told me at my hospital that they don't have a freezer or ice so I will need to bring my own cooler.
Wishing everyone all the best and lots of positivity!!!!
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hello ladies
Im currently on weekly taxol with herceptin perjeta every three weeks, i noticed pain in my cancerous lump as if its bruised when i touch it as well as my shoulder and under arm/rib; its not a consistent pain thought, it comes and go but it seems as if the entire area is bruised
Any similar experience?
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Hi Vee66,
My tumor spot feels bruised, too...I mostly notice it if a bra is too tight on the area. My tumor is low and close to the chest wall. I definitely notice it when the doctor is giving an exam. I don't have trouble with my arm or armpit, but any time i have my blood pressure taken they ask me if one arm is less sensitive that the other which must mean, to mo, that it is common to have a sore arm. Hang in there. I have 5 left. I definitely felt a surge of relief after the 7th one. All of my wonderful supporters were whooping it up after number 6, but i didn't really share the feeling until after number 7.
I have my infusions on Thursdays. Anyone else? I am finding that Sundays are the worst day for me and Fridays are the best day. I wonder if Sunday is the crash from the steroids on that has been mentioned on this thread. I also feel like my eye sight has gone over a cliff. I guess it might juts be natural aging.
Have a great day everyone!
Claire
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I have another question for the group. Does everyone drink the 96 ounces of water every day? or just the 3 days (before, on and after chemo)? I'm also trying to drink at least one green tea and one coffee.
I have liver stuff happening and apparently coffee is good for the liver! Here's a "lucky" side story...with all of the blood work around the cancer, my oncologist didn't like the various liver numbers and wanted to dig deeper. She ordered more tests including a genetic test of the liver genes I have an appointment for a Hepatologist on Tuesday to learn more, but it turns out i have a rare condition called Genetic Hemochomatosis which most people don't discover until older age when they start having organ complications.
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Claire,
I am having a lot of the same symptoms as you. I just finished weekly Taxol #11 along with Herceptin/Perjeta every third week. My infusions are on Fridays and Sun/Mon are my worst days. My liver levels elevated shortly after starting Taxol, but an ultrasound of my liver showed no visible issues. After decreasing my Taxol by 20% a few weeks ago due to neuropathy, both my liver and the neuropathy improved some. My oncologist thinks they will normalize once Taxol is complete. Same issue with the eyesight too! Everything seems so much more blurry now. I've been struggling to drink the recommended fluids, so maybe more would help with everything.
I'm having a breast ultrasound in about a week when Taxol is complete to check progress, but can already feel a decrease/response in the lump area. I will then start bi-weekly AC infusions, which I'm a little worried about.
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Hello everyone. My mom just had her first taxol treatment on Saturday. She was originally going to have four taxol infusions every two weeks but changed to 12 weekly infusions at the last minute because of fear of neuropathy. We were under the impression that you would feel almost "normal" with the lower dose, however she is extremely tired and just doesn't feel good. Has anyone else had this experience? I wish we could just finish with the dose dense treatments but I don't even know if that's an option anymore. Is every weekly taxol infusion different or do you pretty much feel the same after each one? Sending everyone love and prayers!!
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ellied41 could it be the steroid crash?
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Hi ellied41
I'm sorry your mom is going through this and having a hard time. Is there anything specific that is bothering her the most? dry, nausea, sleepless? I get my 8th dose tomorrow. I would say this:
I cannot stress enough how much better the river of water I'm drinking helps. She should be drinking 96oz or more of fluids the day before, on and after chemo. She should feel like she's drowning. It helps with the symptoms tremendously. I got the the point after a couple of weeks where-=-anytime i started to feel crummy I realized I hadn't had enough water.
My infusions are Thursdays, and Saturdays and Sundays ("Days 3 and 4") are the worst days for me. This is the steroid crash...It is the worst part for me. I'm sure this goes differently for everyone. One thing I am doing that helps my mind is keeping a journal. I only put about a sentence a day and often skip several days, but when I go back and read the parts from the beginning, I was definitely more uncomfortable and scared now than I was then. I have left notes for myself each week, for example, several weeks ago, I left a note for myself to take Imodium the night before the treatment. This is because FOR ME, I get diarrhea from the treatments. Other people (and you will see on this thread) get constipation....but for me, having a system in place in the weekly cycle to try to help with the worst parts has been good. and sure enough...by that Wednesday night, I had forgotten about the Imodium and was relieved I had written it down.
Also--try to take the medications before it is too late. If she feels nausea late mornings, she could take the nausea medication right when she wakes up. Tell your nurses and doctor EVERY symptom. After weeks of feeling nausea on days 5 and 6, I told my doctor and explained the nausea...she determined that is was actually reflux I was having from the pre-meds and not actually nausea so she put me on Prilosec daily and I feel MUCH better now.
Hope this helps a little. I will check back to see if you have any more concerns.
Claire
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ellied41, I had 12 taxols in 2018 and then 25 more in 2020. It is more easily tolerated than DD but for many of us it is not a walk in the park. I would say I did not feel normal. I needed dose reductions due to neutrophils being way too low (even with granulocytes stimulant shots) and with a dose reduction it was easier but still.... my treatments were on Thursdays and it wasn't till Monday that I'd feel sort of OK. Lots depends on her steroid dosage and when she stops them... the day after steroids stop is often the worst as far as feeling like you've been hit by a truck.
I think sometimes people paint too rosy a picture of chemo. No it's not like tv and most of us are not alternating between puking and sleeping, but it's still very hard on the body. My recommendations are to sleep properly (get sleeping pills if necessary), take naps, drink lots of fluids (flavoured waters or decaf teas or whatever - if plain water tastes gross, which it did for me), eat whatever goes down and stays down (don't pay attn if not hungry, eat on schedule and meal plan) and get outside for walks as much as possible. Short is fine, to the end of the driveway is fine. Just get outside and move a bit, then rest. Repeat. Keep expectations low, have lots of tv and netflix cued up, and just get through this.
It will be over soon!
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I have a question for y'all. I've had my 3rd Taxol this week and I'm wondering if anyone else has experienced this. When they start the Taxol drip, I get a strange "tingly" feeling in my lady bits. Just...weird. Not a pain, but hard to explain; kind of prickly feeling. It goes away after a couple of minutes. Is this something common or am I a weirdo??
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totally normal. Can't remember which drug does this, but it's a common side effect. Of my 11 treatments so far, I've only felt it 3x. My nurse calls it "ants in the pants"
Julie
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LW422 and Juju-mar - I only experienced that one time, and it was when they administered the pre-med steroid (Dex) via a syringe versus a slower drip. I was told to expect it and that it would go away in 5-10 minutes. It's a known side effect from getting the steroids faster. You mentioned Taxol specifically, so this is probably unrelated, but in case it isn't, there's another data point for you.
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Juju--that's the perfect name for it, "ants in the pants!" Glad to know it's not just me.
MochiPie--thanks; it very well may be the steroid. I wasn't paying close attention, but it was after the initial saline.
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I REALLY HATE this clunky forum software. I have tried searching for things that end up being a giant waste of frustrating time.
I'm sure there are answers already here, but getting 24,000 random hits to sift through does not make for a good forum experience. That said, I was wondering if anyone experiences random "lady bits" pains after having a Taxol infusion? Last night I'd get these sharp stabbing pains in my vagina; not anything horrible but definitely got my attention. It's always something.
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LW422--i agree on the crappy forum. They need an update!
Yes for that stabbing pain here, too. About 3 weeks ago I tried to have sex with hubby. SO PAINFUL. He reminded me that the chemo is doing its job attacking all fast growing cells and any part of you that has a mucus membrane is going to be totally shot. I have blood coming out of my now constantly, and yes--lady bits are shot. I use vaseline which helps with the external pain a little. My rear end often feels like it had a paper cut all the way through...like I've had an episiotomy. I have my weekly infusion on Thursdays. The worst days for this are Sunday and Monday. then it settles down a little only to flare up again.
I saw an Oncology Acupuncturist today. She made me feel SO MUCH better mentally. She validated a lot of the crap and said it won't go away for a couple of months but it WILL go away. She gave me some exercise advice and mostly said what I wanted to hear-, which was-do less if the walking makes me feel tired. She said anything that makes you feel tired needs to be scaled back. I'm seeing her for neuropathy.
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Thanks, Claire. It's nice to know I'm not the only one having these weird pains. I'm glad the acupuncturist was helpful to you; we need all the relief we can get.
I bought myself a peri bottle from Amazon (like used post-partum) to "rinse" off my bottom after I pee. So far I haven't had any external irritation "down there" so I'll keep that up. I am especially vigilant for the first 2 days after a treatment. I chug water like a champ and then rinse things off, haha.
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anyone else have nail issues? I finished my 12 week taxol treatment on March 9 and noticed my big toenails are looking and feeling weird. I'm kind of expecting that the nails may fall off.
Julie
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Juju--so far, I have not had any nail issues (treatment 5 of 12 done). I have been icing my hands and feet, and use an OPI Nail Envy product... but I have no idea if either will prevent a problem after all is said and done.
I have read that the nails recover fairly quickly, but they do have to grow out again.
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Hi Julie,
Mu thumbs are starting to be kind of creased if that makes sense....they have ridges forming. I'm told I will likely lose them but that is sounds worse than it is.....i'm hoping that's true. I have one treatment left. The ridges started about 3 weeks ago but the nails are still there. About three weeks ago, too, I was having stabbing feelings in my thumb cuticles and big toe cuticles. That lasted about a week, and haven't had that since then. The big toe nails seem fine. The oncology acupuncturist said that i will possible lose all of the nails that experienced the stabbing feeling. I'll keep you updated.
Claire
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This is kind of random, but I'm going to ask anyway. A few years ago I had a pinched nerve in my neck in the C6-C7 cervical spine area. I had an MRI and found a bit of age-related disk degeneration but no big problem. It finally resolved itself, but since starting Taxol I'm having pain in that area again. It's my neck and across my left shoulder, following the nerve path (dermatome.)
I asked my MO if the Taxol could be affecting the nerve in my spine (similar to the neuropathy in hands/feet) but he said no and immediately mentioned an MRI if this doesn't resolve itself fairly quickly. (UGH... I don't want spine mets, thanks.)
I'm wondering if anyone else has experienced random nerve pain that is not in the extremities (hands/feet)? Seems logical to me that if Taxol affects any nerves, it could affect them all, but I'm certainly no doctor.
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taxanes affect peripheral nerves, which are ones outside the brain & spinal cord. Usually it affects tips of fingers and toes. Can also affect mouth and urethra....but would not be involved in spinal nerve as I understand it.
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Moth--that's what my MO said, but I have found a few references online that say different. I suppose I'll be getting an MRI soon anyway just to make sure, but I have had a PET scan and the brain MRI that found nothing suspicious, so I need to look at those images to see how much of my neck got scanned.
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Those who did rounds of AC before Taxol curious to know the time in between ending AC and your first Taxol ?
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O2, when my a.c. was done,two weeks later I started the taxol.
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Dec 8 was last AC infusion, Taxol started Dec 22
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Raising my hand on the urethra and mouth being out of whack with Taxol. It started with the tip of my tongue going numb after about #3. then it morphed into everything tasting weird. I'm most ready for that to normalize, I am a chef and have not been able to taste anything for a long time which is kind of getting to me mentally--the fear of my taste not coming back. My MO says it will. sigh.
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Claire--do you suck on ice chips during Taxol infusion? I'm up to #6 and have not had any significant changes to my tastebuds. I go through a cup of ice during the 1 hour infusion. I try to hold the ice directly on my tongue. On the 2nd and 3rd day after treatment, things seem too salty but that goes away.
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