Weekly Taxol group
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I am very new to this site but am so glad to have found it! I am on week 3 of taxol + hereceptin. So far I have not had any SE that I can say came from tx for certain. I had very bad period cramps with the first treatment-- started the same day (!) and have had some headaches but I have those when I am stressed. I am very interested in the vitamin information posted. I take a multi. Am going to make an appointment with nutritionist to find out about B6 and Glutamine. If they can head off ANY pain I'm for that! I have not had any hair loss. My Oncologist said I may not.... has any one heard of someone NOT having hair loss??? Think I'll get a pixie cut this weekend so it won't be so dramatic if I do.
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I am starting #5 taxol/herceptin on Monday. I am taking glutamine and vitamin b6, as well as icing, and haven't experienced any neuropathy. I did start to lose my hair after #3, and still shedding. I also had my haircut in a short pixie before I started chemo, and glad I did.
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Hi all, was supposed to have number 12 today. Last Saturday night I woke up In the middle of the night with severe back pain that continued into Tuesday. I had an appointment with my onc that day and told her about it. Right away she canceled today's chemo and sent me to my radiation oncologist. They both think it is the bone mets
(I have 3) on my spine that have actually shrunk from the chemo a bit. Had a ct today and had 3 marker tats put on my midsection - will have radiation on my spine this Monday. This is supposed to take away the pain. My se's and pain through 11 chemos, so far have been tolerable. But this back pain came out of nowhere, very painful iand very unexpected!!! You never know.
I had a routine, felt pretty good and was tolerating everything fairly well. Anybody else with back pain from bone mets?
Wow is all I can say. Expect the unexpected
As always, be kind to yourselves
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I am a newby to this. So glad I found you ladies. This is my second-go-round with breast cancer. First time was very different, so your information is very helpful.
I had my 2nd of 12 weekly Taxol/Herceptin today. Had my hair cut to a short Bob after treatment today. Expecting the hair to start letting go next week.
Hoping to get a grip on what side effects I may experience.
I have 2 daughters(ages 25 & 27) and 2 grandchildren (1 girl-5, 1 boy-4), therefore I like to make everything fun. So if I can know what to expect, I can plan not to be around the grands if it's not pretty. It's going to be hard enough explaining the hair loss. We just lost my 95 year old grandmother 2 weeks ago, so we have to be careful how we explain things.
Thanks again for the valuable info!
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tsu and TSwink...welcome! Sorry you are here, but know everyone is supportive and informative! Please be sure you update your signature with you diagnosis and treatments as it can get confusing after a while remembering everyone's individual scenarios.
Tsu-super surprised to hear of bone mets. Are they sure that's what it is? Seems odd no one would have caught it before...and after 12 weeks of taxol too!? Crazy! Did you have node involvement from your BC?
TSwink-I just had my first Taxol/Herceptin/Perjeta yesterday...and feeling fine so far. I hear the primary SEs are neuropathy in feet & hands, so I'm taking B6, 200mg/day to help. I'm also putting tea tree oil on my nails, as supposedly our nails can raise, come off, or turn black too.
Taxol #1 went well, but I wound up with a rare 'Rigers' reaction to Herceptin, which brought on sudden chills & shaking that I couldn't control. They quickly treated with Demoral...which got rid of the shakes in about 5 minutes, but did initially make me vomit/dry heave. However, I was fine after 10-15 minutes. Verythankful that was my only bad thing that happened (& I didn't wind up in hospital like I did with every AC treatment due to severe hyponatremia...also a very rare SE!)
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Hi kdtheatre, I should clear a couple of things up: I was diagnosed with stage 4 breast cancer in 2010 with 1 spot on liver. Small lump on breast was removed and spot on liver was was removed with ablation. Since then have been checked with ct scans and MRIs and all was good. In March of this year ct showed 3 small spots on spine and 1 small spot on lung. MRI confirmed this. In May started taxol -3 weeks on 1 week off. After # 9 was sent for checkup ct scan that showed 2 of the spots on spine and 1 on lung stopped growing and 1 of the spots on spine had shrunk. MRI confirmed this. Last Saturday before I was to have taxol #12, my back very suddenly went into severe pain. Was seeing oncologist the following Tuesday, told her about it and she decided that pain was either from the spots themselves OR just from the chemo setting in and "doing its job" apparently a lot of people with bone mets have that type of pain in their bones just from the chemo working. The pain also lines up with the spots. So, chemo oncologist and radiation oncologist decided to radiate the 3 spots because of the pain. I go this Monday to have this done. One time only and will have checkup MRI after that. Since I started taxol, I have had pain off and on just about everywhere in my body, which is a common side effect of taxol. If I had had the back pain earlier, I'm sure I would have had radiation. Saturday was the first time I had any pain in my back and it was really bad. Both oncologists are not concerned as this is very common with bone mets in spine. They are also happy that taxol has slowed the progression of spot on lung and on bones. Will know more after MRI how well radiation worked and will continue with the weekly taxol.
Take care and be kind to yourselves
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wow TSU thank you for sharing. What a journey you have had! I'm not sure it will help, but when I had to get Neulasta injections after my AC chemo, they said to take Claritin (loratadine) to help with the bone pain. I thought that was the oddest thing to take for bone pain.,.but it did seem to help (along with Tylenol). You may have already tried it, butthought I'd share in case.
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If you don't mind my two cents worth, I would like to say that I was told to continue taking the Claritin every day all through Taxol treatment. With AC I took it on days 1-7 and had no pain. I did have one day of moderate aches and pains in my back, hips and legs on day 3 after the first Taxol treatment. I was also told that staying well hydrated (2-3 quarts of water per day) also helps with the pain. I had been doing really well with the water intake until AC #4. I've been slacking ever since. I had Taxol #2 today, took my Claritin and drank my water and so far feel great. Hopefully the pain will stay away this time as that was the only issue I had with the first infusion.
Best wishes to everyone!
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Had 3rd Taxol today....no reaction....Got home feel very tired, even though i took a 3 hour nap this afternoon...I learned today while i was receiving chemo...the nurse told me that Taxol can make you nails come off
Has anyone went through this????
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Nayda--see my post on the Sept. chemo board. I was just reading about nail issues last night.
I had Taxol #2 today. So far so good. I'm feeling great! (for now)
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Great Seq on your 2nd Taxol Run!
I feel okay too..just a little tired...i think b/c my rbc count is low.
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nayda985, It is possible to lose your nails. I do know someone who lost a few toenails but no fingernails. You can ice your hands and feet, 15 minutes prior, during and 15 minutes following your taxol. This can also help prevent neuropathy. You can also paint your nails black or a very dark non-transparent color. Tea Tree oil can be painted on them and your cuticles, it helps prevent bacterial infections naturally. I iced, painted my nails and used tea tree oil. My nails discolored but I never lost any of them. Good luck, MJS
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Nayda-- speaking of WBC, the nurse practitioner I saw yesterday told me that they usually see red blood counts drop to their lowest point after the last AC treatment. She said they will then tend to go up a little (but not quite into the normal range) and then hold steady there until Taxol is done. That seems to be what's happening to me. My RBC dropped lower than it's ever been after the last AC, although not in the dangerous range. It came up a little after the first Taxol last week and supposedly it will stay close to that. I am a little tired because of that, but if it's that's the worst side effect of Taxol I'll take it. Anything is better than AC don't you think!!??
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Seq....yes anything is better than AC lady
....yes my MO said the same thing about RBC...mine isn't in the danger zone either..thank God..he said it go back up...but it will rise slowly.MJS...thank you for your response...I am going to find my some tea tree oil and paint my nails black...I don't think I will be able to take it if my nails come off...lol
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I am going for my 7th round monday. No nail issues so far..just a feeling of shortness of breath that scares me..trying to take a walk every day which makes it a bit better..some shooting pains in different parts of my body..like my breast that is well and in my ovaries area (thinking of course I might have mets there..) Head ace as well...I have 3 rounds left and can´t wait for this to be over..Unfortunately my lump has not shrunk so far so scared about that too..
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Kattis....Omg about the shortness of breath...is Taxol messing with your lungs?? Have you told your MO that your lump hasn't shrunk? Last month after I finished AC I didn't see a change in my breast..it is still puckered and my nipple is still inverted and I told my MO this and that I felt the chemo wasn't working which had me worried...he ordered a MRI..and the results showed that the tumor had indeed shrunk a lot...so maybe your MO will do the same??
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He did and I did an ultrasound last week and no it has not shrunk. I am devastated. After all these months of treatment...well...it did not grow either but he did say 4,5 cm and now 5 cm so I need to call to ask again...In any case he wants me to finish the treatment before surgery since that in any case would better my chances for the cancer not to come back according to him.
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Yes, they told me shortness of breath would be expected.
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Kattis....hopefully the Taxol will shrink it...thanx for the heads up on the shortness of breath...I need to read up on Taxol like I did the AC.
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Had 2 Taxol treatments and developed neuropathy. My Oncologist switched me to taxotere. This drug has less of a chance to cause neuoropathy. Mine has worsened. I actually feel like I'm walking on glass. Has anyone else have/had this problem? Nothing seems to help.
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Walkingonglass, have you tried l-glutamine? 30 grams per day, divided into two or three "servings". Mix the powder with the liquid of your choice. 15 grams is about a heaping tablespoon. Also, try vitamin B6 - 100 mg per day. Worked for me
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I just finished #8 of 12 Taxol - my nails look fine!
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Farmerjo--are you putting anything on your nails? I'm getting ready to do #3 on Friday. So far so good on nails and neuropathy. If you have any advice on preventing either of those things, please share if you can. Also would you mind if I ask how your level of fatigue has been? Ive heard it gets pretty bad starting about week 7. I noticed I was more tired after the second treatment than I was the first. I heard from one person awhile back that said by the 9th week the fatigue was unbearable. Getting worried.
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I am now on #8 of 9 and still no nail issues. I find it important to try to move, walk ...anything..it helps with all issues in my mind. I had a week when I was mostly in bed and that was not good at all and just made the hole thing feel much harder. So I recommend small moves just to get your blood flowing even if it might feel hard.
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This week I completed my 12th and FINAL (yay) week of the Taxol- Herceptin infusion. I will continue with the Herceptin infusion every three weeks for nine months. And of course, radiation starts in January.
A couple of my side effects are different from many of you on these boards. Early on I developed a rash on my arms and legs. Luckily it wasn't itchy but it made my skin very sensitive. The rash got increasingly worse with each infusion. I've visited the dermatologist twice and I am now on yet a new steroid cream to help "come down" my skin. My face is very very red, and yes a different cream for that also. When my hair started falling out somewhere early on, I developed folliculitis which was extremely itchy and painful, and had two rounds of antibiotics to take care of that. I really don't read much about rashes/sensitive skin/folliculitis on these threads.
Following the rash, skin sensitivity and folliculitis, I would say that my other two more noticeable side effects are considerable fatigue, which also seems to be compounded every week, and also some neuropathy. The neuropathy is worse in my toes than in my fingers but at this point does not keep me from doing normal activities.
Of course my hair is gone, my eyebrows look like I over tweezed but I still have about half of my eyelashes. Finger-toenails are still intact. I hope none of these things get any worse.
Can anyone provide information regarding how long it takes to "getting back to normal" whatever that means. Of course I don't expect to wake up tomorrow full of energy, no neuropathy, no rash, a head full of hair etc. etc. but I would like to think that at some point, I'll have some of the side effects behind me
I hope all of you stay as positive as possible and I wish you well
M
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Thought all was fine with my Taxol #1, Herceptin and Perjeta (other than the little instance of Rigers)...as i felt great/fine afterwards for several days (other than diareah instances off and on). However, on Day 6...I wound up in the ER just not feeling right - after having tingle arms/face, chest tightness, and odd/sudden throwing up (along with severe diareah). "Now what?" I thought while in the ER, as I have had to deal with hyponatremia visits after each AC...but this was different. Turns out the first ER doc asked if I had/ever had a heart attack as my Troponin levels were elevated. They then did further blood testing and found my 'clotting' levels were very high - so off I went through a ton of tests. After a chest xray, chest/abdomin MRI with contrast, and a stress test...my heart seemed fine. They still didn't know why my Troponin level was elevated a bit and worry if it was trending upward I would have a heart attack. Oiy. I got out of hospital the next day (Wednesday of this week)...planning to still do my Taxol#2 on Thursday (yesterday). However, my NP wanted me to come in and repeat blood work and get tested for Cdiff (which I have had 2 other times in my life) instead - so they pushed chemo to today (Friday). However, I started feeling crappy again last night...and once we got new blood labs in this morning - my Troponin level went up a bit, and my Lactate Dehydrogenase is very high. NP didn't know what was going on basically...or what it could mean. Still waiting on Cdiff results - which I am now beginning to wonder if it could be. Hoping skipping this week of Taxol doesn't screw up things too much, as I am pretty sure it is the Herceptin that is affecting my heart. I meet with my cardio doc on tuesday. sigh.
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I am so sorry to hear about some bad side effects here. I guess I have been lucky so far (knock on wood).
Yes I have developed a rash, already week 2 of taxol and it has been with me every since. Small dots especially on my chest area but also around my stomach and back. I am using a mild corison creme to manage the rash which does not seem to help much. I am also using pure olive oil on my entire body that seems to help with dryness (the usual cooking oil). I also take baths with olive oil that seems to help a bit.
I did develop an infection in my navel, of all places, the fun never ends, and I am treating that with an antiseptic creme as well. I guess my concern all along has been to be able to just be able to continue the treatment plan so I am trying not to complain about anything as long as I am not feeling my heart jump any beats which has not happened yet.
I have 2 round left before a break for a little over 3 weeks before surgery planned 21st of Dec. During those 3 weeks my body is suppose to recuperate enough for surgery.
Sending all my love and wishes for everyone to not experience any bad side effects.
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Anyone experience little blisters on the side of the finger tips? just had my second weekly taxol.
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Hi everyone I have not posted here before but read the posts and thought I might add my Taxol experience thus far
today I will have infusion 8 of 12 Taxol treatments I am doing Taxol only I see most of you are doing A/C and then Taxol or a different combination and I thought I would post my experience with the Taxol.
I take 5 steroids 12 hours beforehand and another 5 6 hours before Chemo, they give me Benadryl and zanax premeds by IV, I also get a Zofran and a maxaran (both anti nausea drugs) then the Taxol - entire infusion time is about 2 hours. I do get restless leg syndrome with the Benadryl but have food keeping my feet firmly on the floor or standing and walking around eases it.
Infusion 1 - only SE was numb toes, constipation
Infusion 2 - SE's - numb feet, 1 day of mild nausea, constipation. extremely dry skin
Infusion 3 - SE's - neuropathy to feet and hands, mild nausea, tingling of scalp and hair starting to shed, constipation, dry skin
Infusion 4 - SE's - neuropathy hands and feet, slight headache and hair falling out in clumps, joint pain, fatigue, constipation, very dry skin
Infusion 5 - SE's - neuropathy hands and feet, hair loss slowing down, joint pain, constipation, all over feeing like I am coming down with the flu. dry skin
Infusion 6 = SE's - acid reflux, neuropathy hands and feet, HAIR STABLE AND NO LONGER FALLING OUT, joint pain, slight headache, mild nausea, 2 days of not feeling great, dry skin
Infusion 7 - acid reflux, neuropathy hands and feet, nausea, joint pain, headache, fatigue, dry skin
All my side effects have been mild to moderate and quite manageable I have noticed that when I started the first few infusions that I was amped up on Steriods for a few days before I crashed and the SE appeared, but now they usually kick in by day 2 after infusion and now last 2 to 3 days instead of 1.
I have had no nail issues, I did cut them quite short beforehand and they are quite brittle but that is it. I did not ice nor does anyone at the Cancer Center I go to.
Eyebrows and Eyelashes - have had no loss of them whatsoever
Wishing everyone well
Charlene
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Hi everyone. I will be starting weekly Taxol and Herceptin in about a month. I have a 2nd lumpectomy with sentinel node biopsy next week first before I can start the chemo. I'm trying to plan and wondered what everyone did about working while on Taxol. I have a 8 yo and 6 yo and work 32 hours per week as well. It's not a physically difficult job, I sit a lot, however, it is in a hospital. Any thoughts on when the best time would be to take time off, or if I'll be able to swing working? Would it be best just to take the 12 weeks off so I'll have energy for my kiddos? Any recommendations are appreciated!
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