Starting Chemo July 2019
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After physical exam, Dr. said more chemo. Starting Taxol within the hour. Pretty pissed off right now. 😠 oh well, here I go.
Fairydragonfly congrats!!!!!
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Thanks for all the love everyone. I'm so relieved to be done. Side effects are kicking in today. Taste change, pain, fatigue... But knowing it's the last time somehow makes it more manageable. Eager for everyone else to reach this milestone.
Hang in there. There is a light at the end of the tunnel.
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Started Taxol today 9/12/19
IVs were, Regular Fluid, Pepcid, Steroids, Benadryl, Tylenol (pills), and Taxol
Infusion nurse said side effects will be accumulative throughout taxol treatment including neuropathy, body pain and fatigue. They don't prescribe Neulasta when doing taxol and she said they don’t want me to take more than 2 Tylenol daily or none at all if I can help it. Well infusion lady, I won’t be taking any because it does absolutely nothing for pain.
My experience 1st Taxol treatment
Could barely stay awake during infusion
Left infusion at 1:00 pm
On the drive home started getting a stomach ache
Home at 1:45 and had diarrhea 3x by 2:05 pm
I will try my best to keep posting so others can see SEs that “may or ma not” happen.
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Melmax,
I too started Taxol today 9/12/19. I had the dense dose treatment and I couldn’t sleep at all during the 5 1/2 hour treatment. They gave me benedryl as well and that gives me restless leg syndrome & it makes me jumpy. I came home & took a 1 1/2 hr nap. Keeping the cold packs on for about 4 hrs wasn’t as bad as I expected. Hopefully they work! Neurpothy would suck!
Thanks for keeping us updated on your symptoms, I will do the same. Hopefully all SEs will be “minimal and manageable”
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Hello Ladies, port placement Monday, first chemo 9/23, what are must haves to help get me through this,please, Thank you
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chicat25 wishing you the best possible outcome with taxol 💕
Maggie007 what type of chemo are you having?
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Melmax that blows -big hugs xoxo
ChiCat- when I take Benadryl I get restless legs it’s been happening for like 10 years for me so I asked my Dr for a gabapentin script -and she gave me that b/4 I start taxol next week - call and get a script the lowest dose 100 mg works for me.
Xoxo all!
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Happy Friday the 13th finally turned to the better Weds, man was Fri - Tues rough!! Did blood work Weds and WBC was 22. I about freaked and they acted like it was ok. Got to work and reviewed my other labs and they have been 6-8 range. So I called back. She said with it being a new chemo it would jump and was because of Neulasta. I am still getting that’s for my Taxol. Find it odd how diff one MO is from another. I did tell the nurse about the horrible stomach and back pain so they put me on daily Prilosec. She said it does cause gastrointestinal something can’t remember what she called it so in my words pain.
Melmax I’m so very sorry to hear about having to start again. Big hugs and a lot of love 💕
Chicat25 and 2019whatayear when I got this Taxol treatment I felt like a pure crack head, like I couldn’t sit still in the seat, felt like I was gonna crawl out of my skin. Is this what y’all are saying restless leg? I figured it was just me and being crazy??
Maggie007 welcome ❤️❤️❤️ I would read from the main page and it has tons of info on what to get. There is also a check list that I used to prepare, it was great to use https://www.breastcancer.org/cms_files/90/chemo_checklist_051916_v2_P_.pdf
For me I just started reading the intro info and would save in my notes things that spoke to me. Then I went into the different forums that I had questions about and read as much as I could because it helps me knowing what others have done, think, if it worked or not, etc. For our group I would start on page 1 and read from the beginning so you get it all.
We are all here for you. No question is stupid, nothing is too personal. We are all in this together. The more you know the better you are, in my opinion.
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Ok so I went back and wrote down all of our lovely ladies in the group. I just don't want anyone to feel left out or behind. OHANA
Here is the list of ladies we have in our group, if I've missed someone please add.
britgirls
jjpope1 FINISHED🙌🏼🙌🏼🙌🏼
Flnana2
dvhmouse
fairydragonfly FINSHED CONGRATS 🙌🏼🙌🏼🙌🏼
Kjchico
2019whatayear
UpstateNYer FINISHED CONGRATS 🙌🏼🙌🏼🙌🏼
BeastMode19
Divergent
Amy52
NGCPeach
Flo80
Ccowen52
Oceanbreeze7
Rubydream
Starr42
MLSinTX
Mommasusie3
Sglover71
Arwa89
Lisanicole
deanders
shelligirl
ChiCat25
Maggie007
Melmax FINISHED CONGRATS 🙌🏼🙌🏼🙌🏼
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For some of the ones that haven’t checked in lately I would love to hear from you so we know how things are going.
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Hi Everyone! I have read every single post but haven't had the chance to post in a while. YAY for everyone who's finished Chemo!!
Melmax when I read you had to do more, I felt soooo bad for you. Thank you for posting your experience with Taxol because I will be starting that soon.
I have finished the nasty red devil (AC) but have 12 weeks of Taxol starting 9/19/2019.
Since I last posted, I was diagnosed with a DVT aka blood clot that could travel to my lungs. I have to give myself blood thinner shots twice a day.
I also have lymphedema on my surgery side due to 21 nodes being removed. I am getting physical therapy for that and have to wear a compression glove & sleeve. I had no idea how expensive they were until insurance decided to pay for half. Over $500 a pair!
I actually went to work yesterday & today plus we're going to the beach this weekend. Feeling pretty good during this break before Taxol. I hope it's not too hard!
Someone posted about being nervous about surgery. I actually had to have 2 surgeries before I started chemo. They found cancer in the sentinel nodes with the 1st once so I had to go back in to get 21 lymphnodes removed. I had a right side mastectomy with an expander done May 28& the 2nd surgery June 22. After completing AC, I say that surgery was way easier for me to deal with. I was given plenty of pain medication & rested nonstop. Once cleared, it's important to do the prescribed stretching exercises so you don't get a frozen shoulder or get limited range of motion long term. I now have full range of motion.
I hope everyone has a great weekend! Thanks to jjpope1 for prompting me to post!
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Hi Everyone,
I too have read all the posts but haven't been great about posting. I'm thrilled for those of you that are through chemo,..I can't imagine that feeling. It sounds like there are a few of you that are progressing from AC to Taxol...I don't have any experience with either of those but I think Taxotere is pretty similar to the Taxol and just to put it mildly, I'm not a fan. I've half way through (through 3 out of 6) what I call phase 1 of this journey and each time I am sick for a week. Diarrhea, stomach pains, wicked tiredness etc. I have learned to manage it so much better than the first time but I will say that once I think I have it figured out something changes. This time the worst side effect didn't happen until 6 days after treatment! The good part of it is that my tumor is gone!!! The treatments have worked their magic and my mass completely gone...I couldn't be more thrilled about that. Of course it doesn't change any treatment plans but at least living in the bathroom hasn't been for naught! I also figured out a plan of action for surgery. My last chemo is Nov. 14th and the surgeon wants me to wait 4 weeks before surgery so I am going to have one immunotherapy treatment (1 our of 9) Dec. 5th and then I'll have surgery after Christmas...no date yet but as soon as possible after our kids leave from Christmas vacation. After surgery then I'll have radiation and the rest of treatments. It's such a long haul that breaking down into phases at least lets me complete parts of it as I go.
Jjpope, be sure and keep hydrated if you continue with the diarrhea and keep up on anti diarrhea meds. You don't want to end up dehydrated in the ER!!
Melmax...hugs to you...how many taxol treatments are you getting? Lifting you up in prayer.
Starr...DVT...NOOOO..I'm so sorry to hear this. I hope you are better at giving shots to yourself than I would be...lol. Thanks for the info on the surgery..I'm not looking forward to it but I'm looking forward to having it over with.
ChiCat, for what it's worth, I haven't had any neuropathy so far. I have reynauds syndrome which is just a pain more than anything but keeping cold packs on my hands and feet would be horrible for me. So far, so good but I agree with you, it would stink to have neuropathy.
Maggie, good luck starting treatments. I think JJpope summed it up well. Research and read all that you can and if you have questions we are here for you.
I hope everyone else will catch us all up on how things are going for you. Remember not to be too hard on yourself when you are feeling sick...It's ok to lay on the couch and do nothing. At then end of each day give yourself a gold star...you deserve it!!!
Julie
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Wow everyone started posting and it’s hard to keep up. It amazes me how everyone’s experiences are so different. I think someone asked how many Taxol treatments I’m getting. Supposed to be once a week for 10 weeks. My first was yesterday. After just one treatment, diarrhea, not able to sleep, and tonight the tips of my fingers and fingernails HURT. I was lucky on AC with manageable side effects compared to this.
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I forgot to add, with the neuropathy find a chiropractor in your area that has a laser machine. I go to a neurological chiro (have been for years) about a year ago he got the laser machine. After all my reading pre chemo I found some mentioned laser treatments for neuropathy. I haven’t had too hard of a time with it except a couple times. So we did the laser on my feet and it DEF helped. It’s worth a try in my opinion
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Are any of you suffering from hot flashes? Ever since my last chemo they have been almost unbearable. I keep checking my temperature to make sure it isn't a fever.
I hope everyone is doing well this weekend. Hugs all around.
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Fairydragonfly-I am experiencing some hot flashes too. Had the same chemo as you and finished July 10th. But, also started anastrozole on Sept. 5th. Hot flashes are a se of anastrozole.
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Melmax, I'm still kinda mad on your behalf that they let you think you might be able to skip out on Taxol. You are at trooper. Oward! Your # of treatments are in the single digits!
Re: Diarrhea I have seen some people on the boards here take a dose or 2 of Zofran to help prevent diarrhea b/c a side effect of Zofran is constipation. For me if I take any pain relievers esp. acetaminophen and most esp. anything w/ a pinch of opioids- then I am constipated. So that is also a counter measure to diarrhea at least for me.
Jpope restless legs is like you feel like you have to move your legs. If you don't it's like a muscle spasm. If that is what you felt like yes def. restless legs
Starr42 We are on the same Taxol schedule. I'll be thinking about you on Thurs xoxo
Finana I break the treatments down into chunks too 1.chunk #1 -Surgery- Done. Chunk #2 A/C- Done Chunk #3 starts 9/19 Taxol 12 (then I break that down into Quarters. IE by 10/5 I'll be 25% done with Taxol...etc) Then chunk #4 Radiation.
Welcome Maggie007! For A/C some people said the side effects were cumulative. For me they were not.
Happy Sunday I hope everyone is having a good SE free day!
-Victoria
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jjpope, thanks for making a list of everyone in the group. I was thinking it was a lot of ladies that are here unfortunately. I've had trouble keeping up with all the posts.
I haven't posted much lately because I have been really fatigued by the taxol (and my job and kids). I did 8/12 taxol a couple weeks ago. I had to skip last week because I ended up in the hospital for 2 nights with a sinus infection. They kept me there mostly as a precaution because I had a 103F fever. Kinda stinks because that means I'll have to do my final AC the week of Thanksgiving.
The taxol hasn't been bad for me. No SEs really after the first one. I did notice that since I missed taxol last week, my hair and eyebrows started falling out! Taxol withdrawl. Lol. So I guess I have more of that to look out for once my taxol is finally finished. I've been cold capping and it's been working well though.
I met with a plastic surgeon last Friday and asked about doing a pre-pectoral tissue expander and DIEP flap. He was all for it. But I didn't realize I'd need to get a CAT scan to make sure it would work for me....so much to learn and worry about with breast cancer.
Hope everyone had a good weekend!
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2019whatayear,
Thanks for the gabapentin tip. I will talk with my dr about that before my next treatment.
Overall, The 1st dose dense taxol treatment went well. I was extremely tired on Saturday. My deep bone pain started late that evening and lasted into Monday with each day getting a little better. Tylenol really didn’t do much for it, so I opted for Advil even though I’m not sure it’s approved. Guess I’ll go over that with the dr too. I also get easily winded since taking Taxol. Hopefully that won’t be a cumulative thing.
Good luck to all
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Got a lot of catching up to do on this thread. So so SOOOOO freaking happy to hear that Fairydragonfly and UpstateNYer are all done with chemo!!!!
So one of the side effects of the Decadron (steroid) given with chemo is sleeplessness. So ... bing! ... I was wide awake at 3:40 this morning. Tossed and turned and ended up getting up at 4:30 and moving the laundry mountain (yay!), and completing Assistant Scoutmaster online training (yikes!), and a quick run to the supermarket. So that's all good. The other side effect is increased appetite/weight gain. Yep, didn't need any extra help with that one. I've packed on several pounds since May.
Re: chemo. The Taxol is a breeze compared to the AC. Blood levels dropped last week. My oncologist was okay with it ... said it was to be expected and levels would plateau and then slowly rise except for RBCs/hemoglobin which are expected to slowly decrease leading to fatigue. All in all, I'm doing good. 9 more weeks of chemo to go before I ring that bell. Then radiation and another bell at the end of those 6 weeks. Then I'm sure there'll be other stuff. Onward.
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God Bless you, Britgirls, and everyone on this thread. What we have gone and are going through has not been easy. Some of us needing more txts. than others. Chemo is certainly hard. You never really understand unless you have gone through it. We are all very brave warriors. I am in the middle of radiation txt. now. Good luck to all.
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oh how I could kiss you right now britgirls. I am freaking out about my weight gain esp when my chemo week I can’t eat. I just don’t get it. Pre all this I did amazing and lost 40 lbs, no soda for 2 years and drank 4-5 liters of water a day. That’s all shot to hell now. Was a 16 and hit town to 10/12, now I’m gonna have to go buy more clothes again.
#2 Taxol today. There at 10 didn’t walk out till 5 😳😳😳 I just don’t understand why I’m there all day for every treatment. Was able to reach out to a girl today and shared this site with her. I hope she finds it as helpful as I have. I think right now the only difference for me between the 2 chemos is I’m not as exhausted with taxol as I was with AC.
Much love to you all and I hope you are having the best week you possibly can 💕
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Britgirls, I don't know how you do all that! My daughter is a wolf scout and a brownie this year and my husband is going to take over taking her to meetings etc. I am planning on going to the family campout over Columbus day weekend though. Really looking forward to it!
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Rock ON BritGirls! JJpope hope today is a good day for you! Divergent . Bring lots of wet wipes for that camping LOL
Had my first Taxol glad I didn't have any reaction. Took Gabapentin every 12 hours for last 36 hours. Still had some restless leg issues with one leg but managable. Side effect of the Gab is sleepiness so that helps off set the steroid insomnia. I think I would have slept OK last night BUT I caught a cold from my son~! So stuffy head, post nasal drip scratchy throat= bad bad sleep. BUT I'm grateful NO FEVER! The coughing and extra acid in my stomach from taxol made me naseaous so I took a Zofran. Then today I got some generic prilosec for moving forward. The cold has knocked out my last 3 tastebuds. :-( Overall not feeling as bad as A/C- hope that continues. I used cryomax cold packs on my feet - I focused on the toes. and my hands. It was do able. They gave me a nice heated blanket for the rest of me. The nurse said if I wanted I could have a bucket of ice chips to put my feet in- I was like ummmmmmm, I think I"ll go with these ice packs!
Happy Friday. 1 taxol down 11 to go.
xoxo
Victoria
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2nd Taxol done
So far, I’ve been having two days of loose bowels after each treatment. Out of breath all the time because I’m carrying 20 extra lbs since this started. Strange “zaps” of pain in different places. Off and on middle back and forearm pain - feels bone crushing. They scheduled an iron infusion during my next treatment. RBC is low and I’m very tired. Not complaining just stating facts for others who may or may not have same SEs.
Doctor said it was ok so my son and I saw Rambo and went to Olive Garden today. Huge Sly Stallone fan. Absolutely love him! It was also good to go somewhere other than my place of employment.
Sending 🤗 to everyone! Be kind to yourselves and know that you’re not alone. 💕
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2nd Taxol weds and severe body pains set in again yesterday. I’ve taken all I know to take with no relief. Guess I’m gonna have to ride this out like the first one.
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Jjpope1 - can your oncologist prescribe you something? I took morphine to help with my bone pain.
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Jjpope, I’m sorry if you already addressed this but Is your bone pain from neulasta? If you are getting neulasta are you taking Claritin? I had terrible bone pain after my first round but since then I take a Claritin every morning and no more bone pain. Not sure if this helps but good luck. I know it’s painful.
Victoria, I hope your cold is better. No fun getting the regular viruses on top of the BC.
Melmax, hope you had fun going out with your son. When I feel good and can do normal stuff like that it really helps get through the hard days.
I was given a one week reprieve from treatment this week. We leave Wednesday to go to NH for our daughters wedding. When I was first diagnosed I told the surgeon and MO that they could schedule whatever but I had to be in good shape to travel and enjoy my family the last week of September. Fortunately, I do feel great this week and looking forward to the wedding.
I hope you all have a wonderful week with minimal side effects!
Juli
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yes they are still doing neulasta and I do 2 Claritin 1 am and 1 pm. I’ve taken loratab, Percocet, another meds the PA gave me nothing works. Had to stay home from work today.
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Had my very last Taxol on Wednesday this week, and while I'm having my regular weekly SEs, I know that they will start to subside a week from now. For those of you with neuropathy, I iced the whole time, but had to have my 10th treatment canceled because the neuropathy was starting to effect my ability to pick up small items and my vision was scary bad. My last two treatments were also reduced, with about 3\4 of my normal dose for each.
Besides the neuropathy, my worst SEs were blurry vision to the point where I could not drive, Taxol rash on my hands and wrists that felt like a burn, and diarrhea. The rest were manageable. There really is a wide range in which SEs an individual gets.
I'll have Herceptin and Perjeta right up until my surgery in November. Keeping my fingers crossed that I've had a complete response and I'll be done with everything but recovery.
Hope you are all coping well and know “you got this!"
Diane.
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