Starting Chemo in July 2017
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Purplestar
You are DD Taxol, right? I'm weekly.
After my 2nd round my toes have felt off. Initially I was afraid I had given myself frost bite. The sensations have been coming and going since then. In the middle of the night last night my toes hurt when walking to the bathroom. This neuropathy is something all of us on Taxol worry about.
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my toes feel like arnold is squeezing them! But that started before taxol and just dealing
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Travelhound - yes - DD taxol.
Frostbite is the best way to describe it. I feel like I have frost-bitten toes, while the rest of my body is sweating. Yuck. Fingers crossed it's temporary.
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travel, when I did my PET scans I have some nodules at my thyroid so I would like to make sure it is not cancer. From what I read it is common to have nodules I'm not too worry but it would be good to check out. I won't see my MO till 10/5 I will check with him about blood transfusion. I am trying hard to eat more so my count won't drop that much. Hopefully taxol won't hit hard. Did you lose your toe nail??
Purple- how's your toes?
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Travelhound and Purplestargazer,
Have you taken L Glutamine for the neuropathy symptoms? I've definitely had the freezing hands and feet, but it gets better when I take the L Glutamine. Other than that, hands and feet have been working well. I have been dropping things more, but I think it's fatigue, not neuropathy.
AC+T sounds brutal compared to my experience with TCH. Sorry so many people are having bad SEs with it.
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In the chair for DD Taxol #2. Premeds going. A little apprehensive about another reaction even though it was mild and resolved as soon as they pushed the solumedrol.
Liver enzymes were a little elevated. MO said if they hit the 100's might decrease the dosage. Praying that isn't the case.
Travelhound welcome, so glad you found us eventually. This site is the best, but the support is invaluable. Sorry you're on this journey.
Proud, I have the slightest tingling in my fingertips of my left hand. I feel like it's a race to finish before it turns into more. Can't wait to ring that bell.
Paulette, prayers said for a normal US, glad your steroid high has subsided.
Leatherette, I love the idea of tea in her memory, she's smiling because you knew her so well.
Jen you go girl, walking 5 miles a day, good grief, I have to up my game!
Proud, so glad you have the two week break that allows you to feel good. How long are the suggesting this regimen?
Dmjmom, aren't you having your last chemo this week. Ring that bell with gusto.
Runnermom how's DD Taxol going?
Sunny, working during trearment is exhausting I'm sure. I would probably come home and collapse before dinner. All you ladies working during this are truly amazing.
Hugs and prayers for us all, have a god day
Theresa
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tesse, docs have not said how treatments but i do know that stuff is working as my first set of scans showed
Improvement and i am holding on to that, i am stage 4 and in it for the long haul
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Proud - how's going for you? Prayers and hugs for your long battle.
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Proudtospin, prayers and hugs
Re any type of neuropathy, old wives tale says never touch any floor barefoot. I did 4DD taxol. I used to scream and be depressed. It took a while to get better. In my case it was 12 wks w lots of PT. And daily Epsom Salt scrub and ample supply of Arnicare gel.
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Hello ladies, just checking in...
Leatherette: I'm so sorry for your loss. But so happy to hear that your MIL left peacefully.
Travelhound & Purplestargazer: I have been feeling the same frostbite feeling in my toes since I started chemo. I figured it would go away once I'm done with treatment. It hasn't gotten worse with each treatment, but I do feel it more after I do a lot of walking. I will probably try the L-glutamine that everyone swears by.
I had a horrible weekend of swollen hands and hives! I'm wondering if it was from my chocolate-covered cherries binge on Friday night. Haha I started feeling my hands swelling on Saturday morning. By the afternoon my hands were itching and the back of my head and ears were also itchy and starting to swell. I tried Benadryl and cortisone for the itching. The swelling in my hands got worse on Sunday so bad that I couldn't type on my phone, and hives started on my belly so I went to urgent care. The doc prescribed hydroxyzine for itching which helped somewhat, but my hands are still swollen. This all started on day 11 after infusion #3 of TC. I updated my MO's office this morning, and I just got a message from my MO that he doesn't think it's chemo related. I hope not, and that it goes away soon. I have my final infusion next week and hope nothing bars me from finishing this. I've gone back and read Lojo's experience with her hives, and I think we were originally on the same regimen. Hopefully this doesn't last, and that I'm able to get through my "good" week pain-free.
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Proud, I am so glad your tests came back good. Have been praying for improvement, thank the Lord. I'm in a clinical study and the coordinator said that since she started this, it's been the most amazing thing to see stage IV turn into a chronic disease right before her eyes.
Sunny, you poor thing. Hope the meds kick in soon.
Mimi, like your new username
Hugs and prayers
Theresa.
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castigame - I missed it you're Mimim😂😂 like your new name, I read about your iron pill I might need to do that 🙁 .
Teese - how are you feeling now
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sunnyjay - I hope it is not related to the chemo, but your timing is exactly like mine (showed up on day #10/11 after TC round #2). I could not get the swelling to go down until my MO put me on prednisone (it was so bad, I thought lymphodema had been triggered, thankfully, that does not appear to be the case). Then, after the first round of that, it seemed it was gone, and then came back, with a vengeance, which meant a second round of prednisone, with a longer taper and change to the chemo cocktail for the second half of treatment (moved to Abraxane and Carboplatin - Abraxane weekly, Carbo every 3 weeks).
Abraxane is the same drug with a different delivery agent (natural proteins instead of man made synthetic). It was a great change for me!!
My MO (and the chemo pharmacists) agreed that I needed to stop the TC in case the next infusion(s) led to a more serious allergic reaction. It seems that, from what I've read on these boards, the MO responses vary when it comes to allergic reactions and whether it is the chemo's fault or not. But, my MO said it was definitely a delayed allergic reaction to the Taxotere, and that I'll have a sensitivity to hives for about 2-3 months PFC.
The prednisone really helped, as did a daily Zyrtec (the Zyrtec was way better than Benadryl). My triggers became heat and pressure (and the combination was the worst). Now it is under control, and to the point that I actually forget to take my Zyrtec until I get a little red bump later in the day.
I hope you're able to get it under control and feel better soon. I wouldn't wish it on my worst enemy. I've never had hives like this, at all.
Oh, two other things that helped... cool compresses and when my ankles and feet swelled like crazy, my husband rubbed my feet (he's amazing!) and this helped a lot!
Sending many healing thoughts your way! You're almost there, hang in there!
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Ty sisters.
My new username is selfdeprecation (spelling?) re to more surgeries since all three mission critical TXs are over. Needless to say I am relieved.
Getting colonoscopy w upper endoscopy this Wed. I am afaid I may eat my own fingers from hunger tomorrow.
Elbow lump removal surgery scheduled for mid Oct, Two week recovery needed
And total hystrectomy scheduled for late Oct. Yes my new username totally fits me.
I found out today that my employer will be paying health insurance benefits for the duration of long term disability which is 5 months. I am grateful.
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Paulette- infusion was uneventful, no reaction this time, yay! Thanks for asking.
Mimi - I need to squeeze in a colonoscopy, yup, fun times!
Great news about your employer and insurance coverage.
Theresa
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Mimi - hysterectomy is more painful and take longer to recover. Wish you luck and don't eat your own fingers!!
LoJo - I remembered your talked about the hives you got it sounded so nasty. All these side effects sure aren't walk in the park at all
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Evening I am exhausted...a long few days. My sister-in-law is not doing well.
Leatherette...so sorry. Prayers for peace for your family.
Sunnyjay....hope those hives clear up soon!
Teese...hope your infusion went well today!! #2 is done...yay!
Proud...wonderful news on scans!!
Paulette...hope the thyroid stuff turns out good.
Mimi...you have a very busy month!
Well so far Theresa was right on DD Taxol. some mild annoying bone pain. A little tired and weak on Saturday, Sunday was better and doing good today and was able to work all day. Not missing the fatigue from AC. So glad to say 3 left. I can see a light!
I know I missed some of you...hugs and prayers for all.
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Runnermum, you have quite the road to travel with your sister in law. So sorry.
Theresa, thank you for posting the words from the coordinator of the study you are in. About stage IV turning into a chronic disease. I've been delving deeper into these forums and have made myself quite depressed today.
Also the joint pain really wears me down. I try to be grateful for more energy, but instead it seems to just give me more energy to feel emotionally down. Before I found these forums, I was not reading anything at all about BC. Perhaps I'm just overwhelmed with the information.
Sunny- hope the hydroxyzine helps with the hives. Sounds miserable.
Linda
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Runnermum - its tough to deal with so much when you're in pains. So glad that you only have 3 more to go.
Travel - I'm glad to find this website so I got to learn more about BC, how are you doing with taxol?
Teese - great that you are feeling well ... keep it up!
Hope everyone have a good evening and good night.
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Teese- what clinical study are you in? My MO has put my name in for a clinical trial involving an AI drug. Interested in what all is involved to be part of a study.
Thanks for any info you are comfortable sharing.
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Linda I know, it's sometimes best if I just stay away from this site too. It is overwhelming at times.
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runnermom- I'm sorry about your SIL, I somehow missed that she wasn't well. Prayers said. I'm glad you enjoyed your weekend and felt well.
Dodgersgirl, in doing a review of women who've taken Adrymycin they found those on Lipitor had significantly less incidence of heart damage. So a small study was done with the same results. Now they're doing a large nationwide study and I'm in that one.
I had to do labs and a heart MRI to qualify. Then when accepted I did more labs and a cognitive test. I'm either taking a placebo or 40mg of Lipitor for the next two years and every 6 months labs, physical, heart MRI and cognitive test. All of this is being monitored by the top cardiac oncologists in the country so at least if AC did any damage that could be detected early then it'll be seen quickly.
Linda, definitely take a break. I sure do. I should be gearing up on everything related to rads, I read a little and some of it sounds overwhelming so I take a break. Protect your mental health, it's very hard to pull out of a funk and it will impact you more than aches and pains ever will.
Some thrive on knowing every scrap of info and others want only what the Dr tells them. Whatever works for you to keep you sane then do it. No one judges.
Paulette, when do you hear about your thyroid US? Prayers for normal results.
Sunny, are the hives and swelling subsiding? I sure hope so. The hot weather has to be the worst. Ugh! Praying for relief
LoJo, all the misery you went through with the hives and delays are now giving others info and hope in dealing with the same. You're a blessing!
Regarding frost bitten toes numbing and tingles. I read through a ton of Taxol threads and came up with all this. Unfortunately none of it is backed by research it's anecdotal, but some of it is pushed by doctors.
Icing has a bit more going for it in research but just barely. It's great for standard Taxol but a little harder with the 3 hour DD infusion.
B6 and B12 supplements
L glutamine
Massaging feet with Underly smooth foot cream. (Due to this containing parabens and my tumor strongly estrogen pos I'm using Eucerin cream) I massage 2-3 times a day.
Epsom salts baths, soaks, scrubs. I use the bath daily if for nothing than to help my nails and toenail to stay healthy as I don't want them lifting off.
Please add anything your doing to this list so we can do all we can to ward off neuropathy.
She1212, I believe you must be on Taxol now too. How are you doing?
Theantz, how are the toes doing, has the tingling subsided? I believe chemo is done, what's next?
Today is a good day, because I didn't have a reaction yesterday during Taxol I didn't get the extra dose of steroid and was able to sleep fairly well with the help of an Ativan. Have a decent amount of energy today yay!
One last thing. My daughter is being treated for the flu and is away at University. The school clinic was slammed so she went to the urgent care, they were packed too. She has classmates with it too. Mentioned to my infusion nurse and they have two nurses out who just tested positive this week. BE CAREFUL, get all your family members their shots now. My MO says I can't but hubby is getting his today. Looks like it's arrived early on the Midatlantic area. Ugh!
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Teese I am going to see my MO on 10/5 to find out my report, meanwhile I just stay cool and don't worry too much.
You covered everything on neuropathy, from what I read someone used a lot of Epsom salts, if you talk to your MO they can prescribe Neurontin or Lyrica. My paperwork said neuropathy can be permanent if action not taken.
I should suggest my hubby for flu shot soon, oh boy, we might have to wear mask soon. 😷.
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teese- sounds like an interesting study. Thanks for taking part in a study that can help breast cancer patients in the future!
You mentioned the flu. I had my flu shot 9-20-17 but it takes a couple of weeks to take affect. Imagine no one with run down WBC wants to be exposed to the flu. Just like Paulettek said, it may be time to wear face masks. Thanks for sharing that info about the flu in the mid Atlantic area.
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I just emailed my oncologist re: flu shot and they told me I could get one. They will even give me one, if they have them in stock, when I'm in for chemo. Interesting every facility has a different opinion.
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purple, I'm annoyed at my MO now!!
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Teese - My institution seems to be very liberal about everything. They provide acupuncture at chemo treatments. They don't restrict the use of any supplements. It's a highly regarded teaching hospital so I trust them but I do note the variation in opinions and protocols from what I've read on these boards.
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Purple- which state do you live in? I know my MO won't allow flu shot.
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I live in Chicago, IL
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My last chemo infusion is tomorrow!! Whoop!
And, my radiation oncologist's office called this morning and set me up for my CT-simulation right after chemo tomorrow. I'm very excited to get that out of the way.
I don't know when it happened, but I lost lots of eyebrow hair somewhere, lol. Was just thinking that I've been lucky because I'd kept what little bit of brow I have, but nope...bald spots right in the middle. Oh well at least I have eyelashes (knock on wood).
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