Weekly Taxol group
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BlueKoala - I am happy for you to be so close to finished with Taxol! Yay
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In the car and on my way.
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Thinking of you fireheart and hoping your 1st infusion goes well. What chemo regimen are you doing? I was really anxious at the first treatment too, not knowing what to expect. As you get familiar with your own side effects "pattern" afterwards it gets a little less scary, at least for me anyway. Hugs to you.
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Thanks for the words of encouragement, roofcat. I am getting Taxol & Herceptin for 12 weeks. Then I continue the Herceptin every three weeks for the remainder of a year.
Sitting here with the Herceptin dripping in. It was the benedryl that really made me loopy. Was in the midst of talking with the art therapist when I had this sudden "stoned" feeling. It was great to have her here so I could keep my brain focused. I think if she had not been here that I would have zonked out. It wouldn't be bad to sleep, but talking to her was better.
Got a bit abdominal discomfort near the end of the Taxol and some slight headache and discomfort in my right hand when the Herceptin started. Overall, not too bad. Not fun but not total torture.
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Fire heart: Benadryl makes me feel like a zombie. I am at a quarter of the dose and still get sleepy. Some of the best naps are during chemo.
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The nurse made a note that we're going to keep the Benedryl dosage but slow the drip. It will run over 30 mins instead of 15. I like that idea. We can see if I don't get that "hit the wall" feeling. They also talked about being able to shorten the Herceptin time. It was 90 mins this time. I think I would like to keep it that way and see if the headache and arm discomfort recur. It's also allergy season, and my sinuses have been acting up. So there's a chance the headache came from that. Think it's going to take a few of these infusions to figure it all out.
Home lounging on the hammock on our back porch. Just ate some yogurt - working on getting lots of protein. We'll see what the next few days hold. This is definitely a learning experience.
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Had my 10th taxol today (woohoo) and came home and decided to rip out a tile floor. Venting and saying "take that bitch " (aka cancer) while I smashed the tile. Oddly therapeutic. Discovered I need a grout tile cutter the hard way. Off to home depot in the morning. Hope you all are well. I read all of the posts and send you positive energy. To those of you getting started with chemo, it is a very scary initial undertaking, but it IS doable and you will be on the other side before you know it. Kelly
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Katjadvm - If there's any tile left, maybe we all should take a road trip and help you smash cancer. I know what you mean about therapeutic. One of the drawings I did with the Art Therapist today I decided represented what cancer was doing to screw with my life. I crumpled that bad boy up and slammed it into the trash can. Not as loud as smashing tile, but equally satisfying.
Hoping and praying all of you are doing well.
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Hey Fireheart: your Pathology profile and treatment regimen is a lot like mine. Have they talked to yet about hormone treatment later on? I am trying to figure out whether tamoxifen or aromatase inhibitors will be the lesser of 2 evils as I already have some osteoporosis going on. Hope the ensuing post-chemo days aren't too bad for you. With Wednesdays being my infusion day, Saturday mornings are usually rough for me, but it also my "turn around" day. By afternoon I feel much better and it's all uphill until Wednesday rolls around again.
To my fellow board members, hope the weekend is kind to you. ((♡))
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Roofcat - Yes. We're looking at Tamoxifen after the Herceptin is done. Though I am 52, I am still pre-menopausal. My mom hit menopause later in life and reminds me it's genetic - thanks for that gene, mom. I want to do more research about oophorectomy and whether or not that would be something worth considering. Since I'm at the beginning of this process, I figure I have some time to figure that one out. I highly respect my breast surgeon and want her input. I'm hoping that Monday is not my tough day. This week I need to be at work at the crack of dawn. While my co-workers know my situation and would not want me to do something I can't, I desperately want to be there and feel like a normal human being.
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Weird question. does anyone else rub their head all the time now that you are bald. I find that I do it constantly. Must look crazy to my clients because I do it when I am thinking. I am a veterinarian and the reaction from my patients is funny. I had one dog lick a bald spot on top of my head when I had shaved it after my first chemo. I could never get away with a wig at work. The animals would pull it off. Just thought the head rubbing obsession was weird. Have a great weekend everyone. This is just a bump in the road.
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I do when my head isn't covered. It's a little weird with the neuropathy in my fingertips though. Feels very rough.
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Hahahaha - Katjadvm, I do it nonstop!!! My head is like a magnet to my hands. I'm like my own personal Buddha except instead of my belly, I rub my head
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I have about a quarter of an inch of hair, And can't help but rub my hands all over it!0
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Hi ladies,
Received 1 of 12 Taxol 250 mL weekly infusions on 8/8/16, along with Herceptin which is every 3 weeks for 1 year. Has anyone started recently who has IDC, triple positive,and can share their experiences and advice?
At what point does the hair fallout? Any pain in feet (neuropathy?) after minimal walking? Sensitivity to the sun?
What are your side effects and what days are your good/bad days? What are you able to eat?
Thank you for sharing your experiences.
Karen
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3rosebuds - welcome to the weekly Taxol merry-go-round! I am triple + as is fireheart43. If you peruse this discussion thread back several pages or more, you will start to get a good idea of side effects and experiences, etc. Some are getting weekly Taxol (paclitaxel) and others taxotere, which are 2 different chemo agents, likely with different side effect profiles. I am getting paclitaxel. I had my 3rd round last Wednesday and today (Sunday) I found a good deal of my head hair had shed after washing and rinsing in the shower - so 17 days after the start of therapy. This is the FIRST time this has happened, so I may be joining the bald head club soon. Everyone's responses to chemo seem to be highly individual but it certainly is helpful to read about other's experiences. Also check out the topic: Anyone starting chemo August 2016? for discussion by people getting a variety of different regimens. Well I guess I'll blow dry my hair now and see if it flies around the room
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Welcome my3rosebuds! We do share pathology. I just began my chemo regimen on Friday, so I'm a bit behind you and don't have any real experience to offer. I have done lots of reading, though, and have noticed that SEs are very individualized. All of our bodies seem to react differently. Nerd that I am, I actually made a little spreadsheet to track my SEs and keep track of any trends.
roofcat - Ugh! The dreaded hair loss. You did make me chuckle with your last sentence. I envisioned myself turning on the hair dryer and watching it all blow off. Are you thinking of shaving yours or are you going to see how it goes?
Thinking I'm going to shave mine this week. Actually may start with a mohawk just for the sheer heck of seeing what that looks like. Working in a school, I plan to start the year with the kids wearing my hats and scarves anyway. It was actually so hot yesterday I was ready for it. I think I would have a harder time coping with thin or patchy hair than just being bald. It will be shocking to lose my eyebrows and lashes too. Trying to decide if I want to document it in pictures or let it become a fading memory.
Interesting to hear about how everyone feels compelled to touch their heads. I'll let you know if that happens to me.
Hugs to all!
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With weekly taxol I never lost my eyebrows, and only lost the bottom lashes of my left eye - and there were already stubs growing back before I noticed! Losing lashes and brows is not a given with taxol. (I kept my hair using cold caps.)
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Hi all! Haven't posted much over the summer.
I finished 12 weeks of Taxol/Herceptin on July 21, 2016. Here's what I experienced:
* Hair thinned do much hslfway through that I shaved it down. It's now about a half inch long, but appears thin.
* Lost my eyebrows. Granted, they were thin from Hashimoto's to begin with, but yeah...gone.
* Lost at least half of my eyelashes.
* Bloody noses for weeks. Had my nose cauterized in 7 places, inserted vitamin E several times a day, used Ayr, and slept by vaporizer.
* I took Biotin throughout, so minimal nail changes. Chemo nurses are astounded.
* I would get massive, excrutiating leg pain from days 3-5 each week. Vicodin helped.
* Neuropathy stated a little over halfway through, still here. Really annoying. Mostly toes and feet, a little in fingers.
* Nausea was rare, and Compazine took care of it.
* Diarrhea and bladder pain the first three days each week. Immodium helped the former.
* I fortunately got no mouth sores, but my feet did blister a little toward the end. My gums hurt now, so I don't know if it's delayed reaction or unrelated. Remember to regularly use Bioténe mouthwash!
* Horrible metallic taste went away after the first few weeks. During that, lemon helped in my water, and I used lemon drops.
* Hot flashes from the medical menopause have been...interesting.
I'm now doing Herceptin only every 3 weeks for the next nine months. Plus getting a hysterectomy. Plus Tamoxifen or Femara for ten years.
Fortunately, no Prednisone with just Herceptin, so I won't have those sleepless nights after infusion! Yay!
Good luck to newbies. Get your support system. I had the best nurses...still do as Herceptin continues.
Good luck!
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I am going to have dreams about blow drying my hair off. Made me chuckle. I dyed my hair blue and purple for 24 hours and then shaved it my first day of chemo. I struggled with the looks for a couple of weeks but then I felt like a badass and very empowered to be showing my cue ball and living my life. I bought an FUCancer shirt and wore it as my nightshirt for a while. Wanted to make a large foam middle finger so that i could flash it at people who stared at me. As you can see, I got a little testy, but ultimately I have enjoyed being bald during this crazy hot weather. After four months of chemo, I don't even really think about it any more, until I get into the shower. Thinking of you all. Keep laughing and enjoying your life. It is possible to have fun, even during chemo. I have named my tumor "Floppy" (breast fed three babies, two at once) and am looking forward to my Flopectomy end of September.
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Katjadvm - Love your attitude! I'm with you. I've decided that if this is what I have to go through that I'm going to have as much fun as possible. There ARE good things to be found in the midst of this trial. Had to laugh at your shirt - I saw one online the other day that I intend to buy. It says "Yes they're fake! My real ones tried to kill me." Immediately after my BMX I couldn't bear to wear a seatbelt across my chest. Told my hubby that if we got pulled over and an officer said anything, he was going to get flashed and asked if he would like his chest to look like this.
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Roofcat, y3rosebuds, and Fireheart, I am also on Taxol and Herceptin. I had my 5th infusion Thursday. My side effects are bloody noses, stomach issues, fatigue (Sunday and Monday once the steroid wears off), dry skin, hair loss, and sore feet. I am icing my hands and feet during Taxol. How are you doing in terms of side effects?
Fireheart, what is an art therapist? And how did you get connected with one?
Bird
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Roofcat, what does DUAL mean?
I think I asked somewhere else, but don't recall seeing a response...Assuming I have chemo, I'd hoped to read on my Kindle as a distraction, but that would obviously not be feasible with icing one's hands. Thoughts?
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Katyadvm: I LOVE your attitude!
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Dear Taxol Ladies: I'm joining you tomorrow. I'm done with four cycles of epirubicin (someone called it "The Red Devil"--perfect name) and Cyclophosphamide, which have made me almost bald (military bristle, but really almost skinhead) and crabby and old and uninterested in sex, which has never happened to me in my life before, including during menopause, and I am 59, still stunned that after none in my family I've come down with ESTROGEN POSITIVE STAGE 1b GRADE 3 breast cancer. Also after breastfeeding three kids. So far all have said this stuff (Paclitaxel) is easier to take than what I've had before. Sure hope so. Interested in hearing, especially with those who have same or similar diagnosis. Many thanks.
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VLH, I ice 15 minutes before, one hour during, and 15 minutes after Taxol. I either nap or visit with whoever drives me. The Benandryl makes me too sleepy to drive. I had different friends and family members sign up for a chemo day. We usually visit and catch up on life. It is nice to have the support and love. Plus, I need help putting on the gloves and booties. I bought the Elastogelsand bring them in a small cooler with dry ice.
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Thanks for the response, Bird-of-light. I'll be driving myself although the friend who recommended this MO said she would try to meet me to chat if I wish. When I'd talked to the MO a few months ago, the then recommended neoadjuvant treatment would have been five hours the first day. That was four drugs ((TCHP protocol) for HER2 positive. The solid tumor pathology report said triple negative so I think a taxane will still be in play. I'd thought of an audible book on my Kindle Fire, but know I'll have to rewind because I get distracted or a nurse will ask a question or something. :-) The Elasto Gel gizmos look nifty.
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VLH, I had neoadjuvant chemo and began with 4 dense dose A/C, Adriamycin and Cytoxin. During the A, I iced my mouth alternating between ice chips and fruit juice popsicles. No problem using Kindle during that phase. But you are right during Taxol iced hands and feet. Pretty much impossible to do anything much with your hands. Use the restroom before icing and when you switch to fresh mittens. My brother came with me during my treatments and we watched TV and chatted. Good Luck, MJS
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Hello VLH - "Dual" stands for dual signal ISH (in situ hybridization). My biopsy sample was sent out for dual ISH in May when the immuno-histochemical stain (IHC) results for the HER2 receptor came back as equivocal. By the way, depending on how accustomed you are at all to Benadryl, I'd HIGHLY suggest having a back-up plan for a driver. Even though they cut my benadryl dose in half now, I am still so loopy afterwards, there is no way I'd drive myself.
fireheart: You'll be glad to know my hair didn't blow off with the blow dryer
. When / if it really starts coming out and I look like I have mange, I'm going to get it buzzed. When it does grow back someday down the road I'm going to get it dyed ombre blue and purple just for the shock value.3rosebuds & Bird-of-light: I've had some but not all of the SE's from Taxol in Mizzoh's (thank you) very nice summary list. They include nose bleeds (i put Vaseline in my nose with a Q-tip), some mild (thank God) diarrhea, some horrid leg cramps (keep taking your magnesium and stay hydrated everyone), mild neuropathy. So far I've felt just a little queasy but have taken no medication for it. I just take it easy now with variations of the BRAT diet for the 1st few days after infusion. Heartburn is largely taken care of by OTC Zantac-75. Every week it seems a new side effect comes along just to keep me on my toes I guess. This week I had quite a bit of tongue redness and irritation, but I've been using a peroxide mouth rinse sort of like Glyoxide that seems to deal with it.
katjadvm: You are funny. I like the foam finger idea. The steroids make me VERY testy and my poor husband is the unfortunate recipient. I think he is learning not to take it personally.
Good luck and God speed to all of those just starting. To those in the middle, keep on keepin' on. To those of you nearing the finish line, hooray! We can do this . . .
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Thanks for the tips, MJS. I have severe Fibromyalgia so often feel like I need the rest room when I really don't. The problem worsens when I'm nervous. I'll definitely visit the loo before the icing starts. :-)
Roofcat, interesting, I'd not heard of Dual Signal ISH. My core needle biopsy IHC was equivocal for HER2, but my FISH was HER2 positive. The IHC for my surgical / solid tumor was also equivocal, but my FISH showed HER2 negative.
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