Weekly Taxol group
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Hello everyone!
Jmac - I as told by my cod capping specialist that yes, people on weekly Taxol will lose their hair if they don't cold cap. She said that by week 8 - 10 most hair is gone. Some lose it after the Taxol is finished. Everyone is different.
8-10 weeks pretty much corresponds with what my body hair is doing: It's mostly gone except a wee bit on the front of my private area. Eyebrows and eyelashes are falling-out, slowly.
Taxol #9 is complete; only 3 more to go! I'm starting to have SE's that hurt. Really bad hemorrhoids, swollen joints (especially in the knee with an old sports injury), massive water retention, a red rash on my face and arms, bad bone and muscle pain on days 3-5 post infusion day. My sinuses are so dry it's awful. Nosebleeds all the time. Transient neuropathy, especially in the soles of my feet and my tongue 🤷🏻 I am not complaining. I tend to be a glass half full person, and I look at this chemo as something that's saving my life and I'm incredibly grateful for it.
Met with the pancreatic cancer screening program at UTSW Simmons Cancer Center. Discussed my mutated ATM gene. Have a maternal uncle who passed of PC when he was in his early 50's, but don't know if it was due to ATM gene or not as my mother is dragging her feet getting tested. I may never know which parent gave me the gene. Anyway, the surgical oncologist that I consulted with made me feel good about the care I will receive there. Once a year MRI to look at pancreas. He said none of his ATM patients have cancer; that he catches it before it has a chance to turn cancerous. Did I mention that he's super hot and has a very sweet bedside manner. I think I had a hot flash or something while we were talking. Lmao!
Anyway, I hope everyone is doing as well as can be expected. Hang in there and have a wonderful weekend!
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Hello everyone,
I hope you all had a good weekend. I celebrated my 63 birthday with my family and great friends. Got very down when I got up in morning, cried intermittently through out day, but being with family and friends helped out greatly. Sores on head starting to dry up and subside, my biggest SE is just exhausted all the time. I'm so used to being so active. Now I have energy of a slug. I do walk my "beast" 80 pound golden several times a day then come home and sleep. Unable to do treadmill, just to damn tired. I feel like my body is atrophying away. Even to lift a 3 pound weight is a chore. I'm sure this too will pass. This week will be 6/12 of taxol. Awaiting my genetic results. Patriots won in football!!! Being I'm from New England of course I'm a patriot fan. Fall is in the air, love the fall with the leaves turning color. Happy Monday everyone
Marta
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Martaj - the fatigue will pass. I read somewhere that you know you are doing chemo when you need a nap after taking a shower. I actually had to do that!!
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heck after a shower is an excellent time to take a nap! :-)
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2019whataye and Annie 60, thank you. Got up this am, made some chocolate chip cookies for the men folks helping my husband pull the boat. It's early but we aren't using it much being I can't be in sun. But after the cookies finished cooking, took a 2 hour nap, then met with financial advisor for 1/2 hour came home and took another 2 hour nap, Can't say I'm not getting enough sleep!!!!
Marta
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I'm glad you are resting. It's hard to let ourselves do this, isn't it? I still have to convince myself that I'm not a lazy slug for just going and crawling in the bed when I need to. Hope you all are doing ok.
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I will be starting weekly Taxol treatments (along with every 3 week Herceptin/Perjeta) on September 27. My treatments will be every Friday. There are a few events coming up on Saturdays that I would like to go to (a friends church is having a country music night, another day there is a 50th birthday party for a good friend of mine) Would I be able to attend these events? I dont want to sit home and feel sorry for myself, just wondering how most of you felt the day after your treatments (I knoweveryone is different but just want a general idea of what to expect)
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ik0106. Nat fees great the day after and actually not bad the entire week!! She only does the Taxol. She did #8 of 12 yesterday. Walked 4.6 miles today and did some weights. Gardening now. I think you will do great!!
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I also had Taxol on Fridays—scheduled it that day cuz I wanted my weekends. I’d always feel good Fri and Sat, and start to flag late on Sunday.
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Thought I'd pop in and say yay to each of yippy ladies and guys and offer some encouragement. Yay about yet another week of chemo being done!! Just remember that while the side effects sucks they are only for so much longer!! You all have got this!!
I hope everyone is having a good week and keep up the fight to kick cancer's ass!! 🥊🥊
~Katie 💗
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ik0106. I would plan to attend the events, especially if they are local/do not require much travel. But plan to maybe do more sitting and "observing" while there, and plan to leave early if they are evening /late night things. You will likely do fine the first 24-48 hours like others have said. A few times though, when I got really bad sleep that first night, the day after was a little tougher.
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Tbush, I hope your nails are getting better.
Katiekins, congratulations on completing Taxol! AC took a toll on my WBC, even with Neulasta. I also needed Neupogen. I stayed on top of my anti nausea meds and took generic Claritin seven days a week, as I stopped my Zyrtec. Hindsight, I wish I would have iced my hands during Adriamycin. My nails looked bruised from that, but are growing out nicely. I had thrush with the first two AC, but that was easily resolved with Diflucan. You can do it!
Hey notdefined! My only complaint is the steroids. I've gained a lot of weight. All of my nurses say that I should drop it quickly. I hope they are right! My girls started school in early August. They got their first interim reports this week. That's why I don't post as often, school and extra curricular activities keep me on my toes. How are you feeling post surgery?
Ipenelope, a year since diagnosis, wow. I imagine that is emotional. Thank goodness you have completed the majority of your treatments. I hope Tamoxifen serves you well and am sorry about the arthritis. You are important to me and others. Thank you for encouraging us.
DogMomRunner, sorry about your ice cream aversion. Rads, huh? I hope you have minimal SE. My sister stop by NC on her way home from SC. I thought of you when she told me.
Wheatscapes, sorry about your gene mutation. Nice that you have a hot doc with a nice personality.
ik0106, I agree with loiswb.
Hi loiswb and Ingerp. How are both of you?
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Hey everybody. 10 of 12 done, woop woop! I cannot wait to be done with chemo.
I had an ultrasound to check on things, and it was good news. No new tumor growth; two of three tumors completely gone, and the third was just a fraction of its original size. Chemo is working! I am so thankful for that confirmation.
Does Taxol mess with your emotions? I have been super emotional for a few weeks--much much more than normal for me. I just didn't know if it was Taxol, or cancer emotions piling on all at once. I am still conflicted about surgery and reconstruction, so I think I may be having more anxiety about that the closer I get to being done with chemo, and the closer I am getting to having surgery.
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HappyAnyway I am good! Just got back from a long weekend at Disney World. I’ll post a pic below—me and my hair about one year PFC. I hear it might get a little more back to normal in about another year. I’m also looking forward to some more length so I don’t feel so much like a poodle. One of my CA kids had business in Richmond this week so is coming home for the weekend. And next week both of my CA kids and my DIL are coming home for a wedding. 😃😃😃
To all of you still in treatment—hang in there. This too shall pass. It’s funny—I really don’t think about the chemo much any more (except when I look in a mirror, I guess).
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StAuggie: Absolutely it plays havoc on you. Especially the mid range ones (5 - 9). I have had my treatments on Thursday and by Sunday I am so sad I just want to sit and cry. Of course the fatigue doesn't help. Hang in there. I have found ways to keep myself busy helps to keep the blues at bay somewhat. Taxol definitely is easier that AC in a lot of ways but I think it is cumulative and does start to really get to you having so many. I am still cold capping and although I have lost a lot of my hair the regrowth has been pretty amazing. Only 2 more to go and done. Starting to gear up to start radiation soon after. Would love to have all this behind me before the holidays.
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mvp459:--Thank you! I thought it was all in my imagination. Last weekend, all I did was cry. All weekend. Lord knows with cancer we have reason to shed tears, but this was not normal for me. I couldn't stop.
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Welcome Jmac67,
SE while on Taxol are cumulative. For me, the first 6 weeks went fairly well. I had one bout of diarrhea each week and some lightheadedness. The last 6 weeks were tougher. I was very tired and it was hard for me to do daily household tasks. My fingernails began to turn dark plus I had some numbness in the fingertips. Concentration was more difficult and I had headaches.
As for hair loss, yes it will happen .. on your whole body. The hair on my head started to come out around week 3. It started with just a few strands and within days bunches would come out if I just touched my hair. I had it shaved off and did buy a wig plus many caps to wear. My brows and lashes were the last to go, a couple weeks after my chemo treatments were over.
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Ingerp
Wow! You are so beautiful and healthy! I love your hair 🥰.
Love your encouraging posts. My DH and I are taking our DS, DDIL, 2 and 4 year old grandsons to DisneyWorld in February.
Was going to wait until they were older but My diagnosis has made me realize I’m living for now. We are booking.Staying on resort means I can take little ones back for naps.
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HappyAnyway-I know what you mean about being so busy now that school has started! I'm not on here as much because of the craziness of it all! I'm feeing really good for being 3 1/2 weeks post surgery This was my first week back at the office, and it went okay I think I pushed it a little more than I should, but it's hard with work and kids I made it to all the kids soccer practices and games, so I'm happy about that. I am still quite sore, and moving very slowly. I do love the results though! My stomach has not been this flat since I had my twins! I'm looking forward to the second phase where they do the fat transfer from my hips
If there ever was a silver lining in this mess that is it. I was cleared to take baths! Which is huge for me since that is how I de-stress.
Ingerp-love the picture. I think your hair looks great! Mine is almost long enough to cover my scalp
ipenelope-love your picture! When my hair gets that coverage, I intend to go wigless!
I just said a prayer for all of you on here going through this. I wish you well.
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StAuggie,
I firmly believe chemo plays with your emotions big time. I just finished up #6 of taxol and have had an emotional up and down week. Hopefully this week better. Steroids also play a big part of this. As usual I'm up at 3am day after chemo, will nap later. 1/2 way through first phase of taxol and carboplatin then on to AC, then surgery. Breast biopsy on Tuesday with ultrasound for clinical trial med. We know tumor has shrunk along with lymph nodes.Marta
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Hello friends I just finished dose dense AC and done with one round Taxol. I am doing dose dense Taxol every two weeks. I am having so much body pain with Taxol and wondering if others had it too. My head hurts and body feels hard and heavy
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Flo80: I, too, am one of the unlucky ones that had a problem with the taxanes. Most people say it's better than AC but not in my case. I did one dose of taxotere and had hand/foot syndrome. Switched to DD taxol. I've had two infusions and both times had excruciating bone and muscle pain. I also have bad neuropathy in the feet and hands despite icing. I just sent the MO a note this weekend that I was not taking the last infusion which is scheduled for this Wednesday. Dealing with the pain is not fun, but it passes in a few days. The neuropathy, however, can be permanent. I want some sort of 'quality of life' in the years I have left. Your MO can do a reduced dose, which is what I requested for the third infusion. This might help you get through it.
I wish you the best.
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Hi all,
Woke up this am feeling great, #6 Taxol was on Friday, walked the dog, got home and proceeded to vomit. I have not done that before. Just took the compazine, I hope it helps. I don't feel nauseated just instant vomit. ugh want next.
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Martaj-
Hope you feel better ASAP , while it was probably the chemo it could also be something else like an illness for food poisioning so I hope it's just a puke fluke and you have a better rest of your day.
#1 of 12 taxol for me is on Thursday. My cold packs arrive tomorrow from amazon. Thanks to whoever recommended the cyromax packs they aren't too pricey and will stay cold long enough and we will use them after chemo as well-looks like they hold up well.
Happy Sunday All!
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Martaj what clinical trial are you doing? Just curious because I'm in one for Keytruda. I have a 50 percent chance of getting the drug...can't tell if I'm getting it or not. The clinical trial nurse said its side effects are pretty minor.
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Divergent,
Phase 1,I get Taxol every week for 12 weeks 6 more to go! every third week I get Carboplatin and the trial drug Atezolizumab/placebo. The trial drug will continue for a year from 1st infusion. It's a double blind study so I have like you a 50/50 chance of receiving it. I hope I get it because it has shown promising results. It is already approved by FDA for other cancers, not triple neg breast cancer. Phase 2 I get Doxorubicin and cyclophosphamide every 3 weeks with trial/placebo, for 4 doses in a 8 week period. I have triple neg stage 3 breast with lymph node involvement. Surgery 4 weeks after all chemo in phase 2 complete, then radiation.
I just want my life back.
2019whataye
I hope the cold packs work for you. I did not use them, but some women at my infusion center do. I did lose my hair by 3rd infusion, but don't have any peripheral neuropathy as of yet. (hopefully not). Some of the women that go to the cancer center same time as me have had good results with the cold packs. I say what ever works!
I have ultrasound breast biopsy this Tuesday for trial/study. I can't wait to see if tumor has shrunk. I feel it has, also one of my lymph nodes is not palpable anymore. My weird rash has somewhat faded on extremities, but my scalp is still covered in itchy areas and is sore. See Derm on Wednesday for recheck.
Happy Monday everyone, I hope you all have a great week. I am hopeful to have one.
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Hi everyone!
HappyAnyway - I hope you are doing well. Tell your sister to wave next time.
Ingerp- you look good, happy. I am used to having poodle hair pre chemo so for me the curls will be more of what I'm used to.
Hi loiswb, jrominger, ipenelope mpv and everyone else who is done or moving on from Taxol.
2019whatayear - I used the cryomax and have had very little neuropathy. None in my hands. I hope it goes well for you.
Everyone else who is in the process or starting - good luck and I hope you have minimal SE!
I am close to a month out from Taxol. Now I am losing eyelashes and my eyes are more irritates. I have had stys or blocked eyelash follicles and boy are they a pain. Eyebrows are still with me. A tiny bit of hair growth on the top of the head but still more scalp than hair. The bloody nose continues. Nausea and chemo mouth are gone! I am getting over the fatigue but worry that radiation will bring it back. I hope to soon have hair length like Dawn.
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DogMomRunner--just an FYI that I had very little fatigue with rads, like 2-3 times. I noticed that it tended to happen after I'd had a super big day (we were getting our property ready to host a wedding in 2016--aiyiyi!). Also, it's not like being tired--you can't muscle your way through. I wasn't necessarily *sleepy*, but my body really felt like I needed to lie down. If I did that for about an hour, I felt much better.
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Ingerp, you look amazing! Great hair and beautiful smile. Good to see life can get back to normal.
Thanks for sharing
🤗🤗
Dawn
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So.. today I was getting dressed and I noticed that my eyebrows are coming back.. I have two taxols left and I am just shocked.. Anyone else getting their eyebrows??
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