Weekly Taxol group
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Gamzu, I wish you didn't have to deal with chemo at all, but I am so happy it's just taxol + herceptin, and I feel really bad about scaring you over weight loss the other day. It's going to be ok. For me, I just discovered yesterday that sour stuff is pretty palatable, at least when the steroids are still onboard, and downed half a Reuben and some fries with vinegar on them (figured I'd give it a try). We will get you through this. Hugs to you.
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No apology necessary, AMG2! I'm going to have to work at keeping my weight up but plenty of people have gone through this and managed and I will too.
Question: did any/all of your oncologists make you take a pregnancy test prior to starting? My egg retrieval is going to be this week and I've just learned that the trigger shot can cause you to pop positive on a pregnancy test for almost 2 weeks, which would run into my chemo start date. Suffice it to say that there is zero chance of actual pregnancy (it takes two to tango, you know) but now I'm concerned about this. And no one from the fertility program has mentioned this effect at all, which annoys me.
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gamzu710 - the only test they made me take was the day of the lumpectomy surgery. You should be fine.
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No pregnancy test for me for chemo for sure. I do still occasionally get them run on me - they must be mandatory for some procedures, but not chemo, but I was also 56 when I started chemo (and also have no tango partner) so the circumstance is a bit different for me. I would hope they would take your own circumstance of egg collection into consideration as well, and just let you start getting this phase over with.
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I'm 39 and no one ran a pregnancy test on me. They warned me not to get pregnant but left the ball in my court I guess. Lol. I thought it pretty funny since my friend went on acne medication and they made her take a pregnancy test and go on birth control. I also haven't had a period since starting taxol. My last period was Sept 1st so I don't think it's coming while on chemo which even though they tell you, it's strange to rap my head around.
Also third round I am finding I’m hungrier and more tolerant of different foods. We ordered in Indian food yesterday and it tasted great- no aversions and no gut upset. My stomach is sensitive the first 2 days after chemo, but this week is easier then last week and I’m back up to my stating weight. My acne isn’t as bad this week either.
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I got a false positive on the pregnancy test they ran before my port placement. It turns out that the top end of the normal hormone range for post-menopause overlaps the bottom of the “you're pregnant" range.
Oddly, no one brought it up to me until the day I was supposed to have my first chemo which was then delayed 2 weeks while everything was sorted out.
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a pregnancy test was included in my prechemo blood work - I didn’t even know about it until my dr appt right before chemo and she’s like “good news, you’re not pregnant.” Yeah, no kidding.
I will say that every time bloodwork threw up a flag (liver enzymes, etc), it was a discussion with my oncologist about what it could mean, what the risks were for proceeding with chemo anyway, and unless it was really major she generally me decide how much risk I wanted to take on. In this case, you have a perfectly valid reason for why a pregnancy test might shown positive, when you KNOW you can’t be pregnant, so I don’t think a reasonable dr would postpone chemo after you talk about it.
Good luck with the egg retrieval this week
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Tomorrow will be my 6th Taxol infusion and am now experiencing numbness in my fingers. I also have lost my hair and have trouble sleeping for at least 3-4 days after my infusion. Has anyone tried melatonin to help with sleeping through the night? Should I be doing cold gloves during the infusion or after? Thanks for any help.
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Cactushouse: Yes, use cold gloves and socks during your infusions. I used them for all 12 of my Taxol infusions and had no neuropathy in hands or feet. I got them on Amazon.
https://www.amazon.com/gp/product/B082HG964H/ref=ppx_yo_dt_b_asin_title_o02_s00?ie=UTF8&psc=1
https://www.amazon.com/NatraCure-Cold-Therapy-Sock...=sr_1_2_sspa?dchild=1&keywords=cold+socks&qid=1633891746&s=hpc&sr=1-2-spons&psc=1&spLa=ZW5jcnlwdGVkUXVhbGlmaWVyPUEyMDFDSkNWUDQ3WUJSJmVuY3J5cHRlZElkPUEwOTc0NTA5MTBKSkpXMjFGUDRCSSZlbmNyeXB0ZWRBZElkPUEwMTI1NzQ3MjI1RFdXR0xSVDlBRiZ3aWRnZXROYW1lPXNwX2F0ZiZhY3Rpb249Y2xpY2tSZWRpcmVjdCZkb05vdExvZ0NsaWNrPXRydWU=
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Hi Cactushouse,
I only have trouble the day of the infusion mostly so I do use melatonin. I asked the pharmacist about it and she ok'd it for me. I get dexamethasone 10mg and Benadryl 25mg IV the day of the infusion. I take half tablet before sleep (2.5mg) and I almost always wake up at 2am or 3 am and take another small amount of melatonin (a quarter of a 5mg tablet). I'm groggy the next day but I take Wed and Thurs off work anyways. Sleep is really important to me and has been my whole life. I'm so afraid to lose sleep.
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Cactushouse, if you don't have the ice gloves and socks for tomorrow you can use bottle of water. Just wear normal, not very thick, gloves and socks to prevent burns. I iced during Taxol for all my 12 infusions and no neuropathy. Though my oncologist told me only last infusions matter.
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Cactushouse - I also started having reduced sensation in two fingertips after week 5 that continues into post-week 6. I wear ice gloves and socks, so I can only think it could be worse without having iced up.
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hi,
I start Taxol on Wednesday. I am comforted by every one have slight SE when compared to A&C.
Only 12 weeks left
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Thank you all for your suggestions on dealing with the loss of feeling in fingertips. Set my fingers on bags of ice during my infusion. Hoping it helps. I have not experienced anything on my feet yet- hopeful. What a wonderful group of strong women! Its wonderful having people who can offer real life suggestions, hope and encouragement. Thank you.
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Welcome BettyMorgan. Hope your 12 weeks goes well and flies by!
Tomorrow is 4th dose taxol (1/3rd done!) and second dose Herceptin. I thought I was done with my period and being put into chemopause but I am not. Day 41 and got my period. I think the 3rd cycle was easiest yet. I did get back to feeling normal by Sunday.
I didn't shave my head since I shed really hard thurs/Friday/Sat but it seems a wee bit less? I'm just going to take it week by week.
I'm wondering what everyone's dexamethasone dose is? I get 10mg IV. I'm 5'6 and 140lbs. I'd like to decrease- I hate the insomnia the first night and the wicked acne I've developed the first time in my life. I talk to my med onc and will ask about going down to 8mg and 12.5mg Benadryl for this next round.
EDIT: My MO did not want to reduce Benadryl but agreed to a decrease in Dexamethasone (8mg instead of 10mg)and see how it's going. I'm 100% ok with that. He definitely is smarter with more experience then me so I'm happy to take his lead. I also asked about tamoxifen and chemotherapy and he said since chemotherapy targets the rapidly dividing cells and tamoxifen slows down the cells they quit putting women on tamoxifen while on chemotherapy.
He ok's my flu shot for Saturday- he said as long as it's 24-48 hrs port chemo. So Saturday seems ok.
I'm wondering if anyone else seems to have bladder irritation? The first 2-3 days after chemo it hurts to pee for me. Nothing drastic but uncomfortable for sure. No fever, chills or anything- but it does feel irritated. He told me to drink 2L water and reduce coffee if I could. Coffees my life line so that will be difficult but I'll try.
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Hi 1982M, I got 20 mg IV dexamethasone with taxol (I'm 5' and 105 lb). I actually never had a problem sleeping that first night, maybe because of the 25mg benadryl that came along with it! Or I'm just lucky - my only side effect from the steroid is that I had a nice little boost of energy and a good appetite the next day.
I didn't have bladder irritation with taxol (though I didn't get herceptin with it), but did with adriamycin+cytoxan. Didn't hurt to pee, but my bladder sort of ached for the first few days after each chemo, sort of like the bladder always felt uncomfortably full even when empty. If the pain persists - as opposed to only the first few days after chemo - you might ask for a urine culture to be done to make sure you don't have a UTI.
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Thanks mle42,
They actually quit doing U/A’s here bc our system is so stressed from Covid. Microbiology/genetics and tons of other health professionals are redistributed. They have started just urine dips and symptomatic treatment. It only burns day 1-3 after taxol and no other signs or symptoms. No blood, chills or fever. I’ll definitely keep an eye on it! I also hate antibiotics bc I alway (100% of the time) get bad yeast infections so I’d hate to take them.
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1982M,
My dexamethasone started at 20mg IV, went down to 10mg and I went down to 8mg. I'm 5'6 and weigh 235. I struggle to sleep the first two nights after my Taxol infusion because of the steroids. My oncologist put me on Ambien which I did try, didn't help. I have been on Melatonin for years, that gets me to sleep, but doesn't keep me that way. I did try Benadryl at night this time and last night slept for 6 hours after my infusion yesterday. My throat and mouth were dry as can be, but it was worth it to sleep more than 2 to 3 hours. That was at the recommendation of my oncology NP.
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First, Cactushouse, I'm icing hands and feet and taking glutamine, and I'm having enough neuropathy that my oncologist lowered my taxol dose by 10% for today's infusion (#7). This really just got bad this week. It usually comes and goes, but after #6, it came and stayed and hurt. It's just my hands, not my feet. I think my MO is anti-neuropathy tho, as he says they rarely have a patient finish weekly taxol at 80 mg/m2. He did try to reassure me that the cancer is still getting killed.
I use melatonin. Dropping my HRT cold turkey, progesterone especially, has made sleep difficult, and steroids are unhelpful in that regard.
Dexamethasone: I'm on 20 mg pre infusion oral, plus benadryl, and am 5'6", 119 lbs. I had a couple of unpleasant reactions to the taxol, though. I was noticing today, I think the dexamethasone made my fingertips stop throbbing, and I hope that lasts for a few days.
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Lots of diversity in the dexamethasone doses even from the start and their impacts. If I tolerate 8mg with sleep and my acne fades I might not go down to 6mg but we will see how this set of 3 goes.
AMG2 I'm sorry to hear about your neuropathy
I get tingling in my feet occasionally but just super quick. I watched a webnair on YouTube the other day by some pharmacist who suggested a few options that maybe haven't been proven to help or hurt but since they don't hurt, they said give it a try if needed- I have been using the Dr. Hoes tens machine for feet that we have. My MO also suggested keeping my feet warm when not icing.I also limited my coffee to one cup and drank 2+ L of water yesterday and no burning! Yeah. I had my second Herceptin with taxol yesterday and other then the longer infusion time, I'm fine. I got a good sleep too last night. I struggled to fall asleep but slept from 11pm-6am. I like a good 7 1/2- 8hr sleep but I will take a solid 7!
KotchAJ - Im so sorry to hear about your sleep troubles. That would be awful. I'm glad Benadryl helped a bit.
I'm a bit worried - I had lots of hip pain at diagnosis but since starting chemo/Herceptin it's disappeared. They didn't do a scan on my bc they thought it wad bursitis. I'm hoping it's the steroids and it wasn't something missed at the start. I didn't have nodes or lymphovascular invasion. I'm kicking myself for not pressing the issue.
Good luck to everyone this week. I'm so thrilled to be 1/3 done!
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1982M, I had lots of bone pain before I started my treatment. I even bought a special pillow to sit on. Because of that I had CT scan and MRI, all clear for bones. Apparently mine was because of stress of cancer diagnosis.
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Thanks Aram! that does make me feel better. ❤️. I really appreciate you sharing that with me.
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Finished taxol #5. I struggled to fall asleep last night, but once I did I slept 6hrs in a row- so that seems like a win. I’m tired and flushed this morning. I'm getting so excited for 6 because that's half way done and huge milestone I've been thinking about to get me through.
Last week was good. I've been getting mild diarrhea off and on and it's been unpredictable. It makes me nervous to go out at all… which in many ways is fine since we're the worst in the country (Canada) for Covid 19. Our medical health officer even broke down in tears begging people to keep to small households. We have no gathering restrictions or shut downs, but we do have vaccine passports. I feel pretty safe and I did get my booster for Covid.
They are doing implant based construction for mastectomy but no DIEP. Im not a candidate for DIEP if I go the mastectomy route anyways, but I was wondering about other flaps if I go implant to buffer the implant. Looks like those were never an option here.
Other then the diarrhea, my energy hasn't been to bad but my WBC's are all dropping. My neutraphils are just below normal at 1.45 (1.50 is normal here incase measurements are different). I did get my flu shot on Sat and hoping that did it and it will bounce back??? My Leukocytes took a big dip after my Moderna booster but came back up 🤞🏻. I would be devastated with any delay since my finish date is Dec 8th and I'm so looking forward to feeling like me for the kids for Christmas.
Hair has significantly thinned. Planning to shave on the 29th.
Does anyone know how long after chemo I should expect to wear caps/wigs etc?
I’m considering buying a second wig. The first one I bought is beautiful but it doesn’t look like my bio hair. I didn’t realize how much I would miss looking like me. I will still wear wig 1 I think for fun stuff once I feel better, but thinking a second wig would be good for work.
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Hi 1982M, wonder if you can get a Neulasta shot to bring your WBCs back up? For how long to wear caps/wigs after chemo..... my last chemo was Sept 15, so I'm 5 weeks out, and definitely still wearing a cap - mostly because my head gets cold! The hair is growing, for sure, both on my head and my eyelashes (woohoo!) but only about 2mm long so far. And I'm blond so it still looks like I'm completely hairless. I'm hoping in another month it will just look like a very very short haircut?
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Home from Taxol #1. I was there for almost 6 hours. To my shock, I did not fall asleep from the Benadryl. I felt a bit drowsy but was still able to continue playing games on my phone. I'm hoping this stays because then I would be able to drive myself.
The decision is that I have to get a port next week. They didn't have any trouble finding veins or sticking me but they think my veins are too small to tolerate 12 rounds of this and will get too damaged. Everything was OK until last when they started the Taxol; I had some mildly burning, cramping arm pain and when the nurse came over to check after a few minutes, there were blotchy red spots starting to travel up my arm along the line of the vein. The nurse didn't like the look of them so she stopped the infusion and they went away almost immediately. She put an IV in my other arm and restarted, and spots started erupting the same way within a minute. They did not itch and with the data of the spots on the other side vanishing quickly, we made the decision to continue the infusion unless I started having other symptoms or the rash got worse. It actually got better within about 10 minutes and the nurse thinks it was so noticeable because I am extremely pale, but she said it was a hypersensitivity reaction and that I needed to get a port because my veins didn't like it. So, OK. I have that scheduled next Wednesday. I didn't want one originally but it will definitely be more convenient and it's not forever.
I was also given a Zoladex implant to suppress my ovaries. The infusion room was not very private so everybody could hear everybody else's medication discussions but pretended not to. Plenty of other breast cancer patients and I wasn't the only one starting today.
They did do icing for Taxol via giving me big ice packs to hold and then attaching two more to my feet with Ace bandages. I wasn't great about keeping my hands iced; at that point it had been almost 5 hours and I was bored silly even with the videos I brought and wanted to play a game on my iPad, so I kept picking them up and putting them down and alternating hands. I'll try to be more diligent next week.
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I had Taxol treatment number 8 on Tuesday. The side effects are getting a bit worse each week. I expected it, but I don't like it. I have neuropathy right now in the footpad of my left foot which is the same side my tumor is on. I also have some in my right foot, but not as much. Finger tips are getting a bit numb as well. Finger nails feel very sore when I type. I'm still on the fence if icing would have helped me or not with that. My fingernails are just discolored on my hands and I am losing my left big toe nail. My joints feel very loose and I feel like the scene in Bambi where he walks out onto the ice the first time and all four legs go separate ways, when I get up to walk. I went in for fluids this Thursday and am honestly wishing that I now wasn't working full time. I haven't been at my job a year yet, so I don't qualify for FMLA in Illinois.
gamzu710-make sure you get the lidocaine/prilocaine cream to put on your port about an hour before you go in for your infusions. It made a huge difference for me on the pain level for port access. I feel like I have a high pain tolerance, but for some reason, that hurts really bad to me.
Only 4 more weeks left before I get a two week break and then surgery and radiation. These last 4 are going to be hard, but it's so close to being done with chemo, I am anxious to have this part over with.
We can do this!
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Steroid insomnia did indeed kick in last night but having read some advice on here, I had purchased a bottle of melatonin beforehand and 5mg did the trick, I managed 6-7 hours. I woke up a bit nauseous but took a Pepcid instead of the Zofran (another tip I read on here) and it went away. This board has been such a great resource.
I had my Moderna third dose on Monday and it has been causing a persistently elevated temperature, not an actual fever but higher than normal. So when I woke up with a warm, flushed face this morning (again) I initially assumed it was that, but my temperature was finally normal. So I guess it's steroid flushing. I also got a Zoladex implant and have no idea what if anything to attribute to that.
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Day 5, so far OK. Having the Zoladex implant put in at the same time makes it hard to figure out what side effects come from which medication. I've had some bloating and constipation but Miralax seems to be managing it. Mildly achy legs yesterday and a bit of blood in my nostrils but not an actual nosebleed. Having this thread has been amazing in being able to see what might be on the side effect menu and recognize it as such.
I've posted it in a couple other threads but my pre-chemo, baseline ALT and AST numbers came back really high. ALT 229 and AST 160. Like 4x what they should be and 10-20x higher than what they were when my PCP did a routine check in May. Current theory from MO's office is all the meds I was on for egg freezing inflamed my liver and it should settle down in a few weeks, but we are watching it. I have seen posts from people who had Taxol delayed or reduced to give their liver a break with numbers better than mine so I am a bit nervous about how bad my numbers may be this week now that my already-inflamed liver is trying to process Taxol as well.
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Hi Everyone, Just found out I'll be switching to TAXOL after my 16 months on Xeloda has stopped working. I was offered an option of using a Cold Cap during the infusion and I'm wondering if you have found that useful to prevent hair loss? How was your hair affected without a Cold Cap? I had AC a long time ago and lost my hair then (strong stuff), but I'm new to Taxol. My choice of Cold Cap will determine where I go for my weekly infusions which will be ongoing until it no longer works, so thanks for your advice!
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Hi NinaCA,
I’ve read a few ppl post about cold caps. I think for weekly taxol they are much more effective then AC. I’m not cold caping but I have around 50% of my hair half way through my 12 weeks. The loss is pretty evenly distributed. There’s a link a couple pages back that discuss hair loss with weekly taxol - it rarely causes grade 4 hair loss. Most ppl end up between grade 2 & 3 without cold caps. I’m shaving it tomorrow bc the roots ache.
I do ice my hands and feet for neuropathy and so far it seems to work. I wear thin mittens and hold ice gel packs. I wear thin socks and slip long ice gel packs into big comfy socks and I periodically suck on ice chips during the infusion as recommended by my MO.
Gamzu: I’m sorry to hear about your liver enzymes! Keep us posted. It’s scary worrying about delay in treatments. Also, I almost always have a slightly crusty/bloody nose now. It’s not to bothersome. My nose runs more frequent just a wee bit and it’s usually pink tinged.KotchAJ: you just have finished #9 by now! That means your 3/4 done!!!! So very exciting to be on the finish line!!! I went and got Emla cream this week. I had been thinking about it since my first couple of pokes since the site was tender. I’m glad I did!!! It did help! Thanks for mentioning it!
Mel42: my counts are back up! I’m sure my counts drop with vaccines bows- my counts dropped right after my Moderna booster and now right after my flu shot. Makes me feel good that my body is sending the troupes out to check the vaccines out. Lol. My monocytes and lymphocytes are low, but everything else bounced back.
Week 5 was fine- same old, same old. Peaks and valleys of being tired, a wee bit of nausea. I ended up getting a migraine on day 6 of week 5 which was no fun. I’m noticing more headaches lately. I actually think I’m eating to much sugar - Halloween Candy 😬. I’m going to reign myself in and see if that helps. I am still having a bit of gut trouble but now I eat all bran buds and it seems to bulk things up a bit so less diarrhea. I had an allergic reaction to tape last week and broke out in itchy vestibules around (but not on) my port site. That was a big pain last week. I did notice my heart racing a few times while I was resting. My baseline heart rate is up 10 beats, which is fine but then I notice it gets up into the 90’s when I’m just laying down. I don’t feel anxious at the times, but it’s noticeable pounding. I did tell the on call physician when I was at the infusion Center. I’m getting a follow up call today and I think it’s about that. Prob a better assessment???
Infusion 6 out of 12 finished yesterday! I’m happy about that. They switched my appointment to 11:30am instead of 9am and I really struggled with sleep last night. I’m a bad napper so I’ll just lay around most of the day until I need to care for the kids. My middle kid was sick all this week so he actually stayed with his grandma to prevent me getting sick, which was super kind. It’s so hard balancing little kids, school, colds and Covid. I cannot wait until my 8 year old can be vaccinated in a few weeks! I still have my 4 year old unvaccinated but hoping things slow down here. I think we’re on the decline of the fourth wave.
I was worried a bit about weight when I started treatments but so far I’m bang on the same. I started around 140lbs and I go up and down in one week, but I weighted myself this am and am 140.4lbs. I don’t feel like the steroids (8mg dexamethasone) does a ton to my appetite. I usually have 2 days of a mediocre appetite and then it comes back to normal. I’m still walking on the treadmill 30-40 min a day, but not much else exercise. I do intermittent fast and only eat from 11am-6pm, but I still eat my normal 3 meals. They just end up being weirder times except supper.
Sorry for the long post! I tried to post mid week and accidentally deleted it so I stuffed it all in here. Lol.
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