Weekly Taxol group

Angtee15

Yahoo Jodi!

Mine is thinning a little but I don't think it's noticeable to anyone but me....yet. I will hit the barber shop when the clumps start coming out. The chamomile baby shampoo has kept my scalp calm I think. We shall see. On to #4!

CyndiNic

Jodi & Angtee15 - yippee for hair!! Mine is hanging in there as well - 4 days past Taxol #3. I have had non stop headaches since #3......nothing pounding but have woken up with one every day. At least I have managed to avoid the strep throat that my daughter had.

Cyndi

Opt4Life

Happy holidays, like many of you, I still have hair too and am a few days pass Taxol #4. I already cut my hair in a very short cut but its growing back. I found some great looking wigs so have been wearing them anyway to keep the transition--emotionally and physically from overwhelming me when the thinning or falling out occurs.

I am surprised but certainly blessed to have minimal sude effects so far--some darkening nails and constipation but nothing some dark red nail polysh and Miralax haven't helped. Looking ahead to Taxol #5 and AC (I have another MRI and echo scheduled in a few weeks).

You ladies stay positive and here is to getting through Taxol with minimal SEs.

Gabby56b

Opt4life...glad you are doing good. I will be getting AC #3 on Thursday. 1 more after that and on to Taxol. How does taxol compare to AC?

Tesla

Getting my #5 weekly taxol tomorrow. So far so good. I think the chemo affects me more emotionally than physically. Might need to shave my hair soon

By the way, anyone get approved for long term disability while on chemo?

Opt4Life

Gabby, I started with Taxol first so don't have experience with AC (yet). Best of luck to you on Thursday.

Tesla, good point about chemo being emotional more than physical. I am still working and doing most of everything I normally do except I make sure I get 8 hours of sleep. I haven't applied for long term disability but will apply for FMLA prior to surgery.

jodes001

I am on STD, and getting approved for LTD this week. I don't see a problem with getting approved, my job requires physical interventions with disabled children who have extreme behavioral issues. Today was my #4 taxol, and I did get a big headache afterward. Hair is s l o w l y falling out...

Good luck to ya!!

jodes001

CyndiNic and Angtee15-

#4 Taxol this morning. BIG headache afterward. Hair is S l o w ly falling out. Appt for a hair cut Thursday, just a bob to my shoulders. Ill probably stop in a wig shop while I'm out. My head has been tingling and itching. I think I have had a few more side effects, but its my nature to ignore small changes. I have had MS for a long time and that goes along with it....

HAPPY New Year!!!!

Angtee15

Good evening!

I had Taxol #4 today too (and Carboplatin that I get every 4th week ) and am experiencing the burning pee for the first time. Drinking an enormous water (more than the ton I was already drinking) tonight to give my kidneys a hand.

My chemo nurse was REALLY emphasizing the importance of letting them know if I am getting even the slightest hint of neuropathy. It was was almost as if she thought I was holding back when I said I haven't had any to date.

Anyone seeing signs of neuropathy yet?

I'm also trying melatonin tonight to try and sleep. Insomnia has been pretty bad.

jodes001

I haven't had neuropathy, or burning pee although at times it seems like I have to go but not much comes out. I have been using Melatonin to help sleep as well, but I cant tell if its working. Are you currently working, or on disability?

Opt4Life

Jodes, I've been getting headaches lately too. Prior to this, I don't think I'd had a headache in twenty years.

Angtee, my chemo nurse is the same way. Her motto is something like "listen to your body or it will make you listen". Anyway, no neuropathy for me either. I do wear my ice pack socks on my feet during infusion though. and am faithful about taking my B6, B12 and biotin every morning.

I am certainly going to add magnesium to my daily supplements as constipation has been my constant 'friend' lately.

NewDay123

Hi Ladies, I'll be starting Taxol #2 soon. Near the end of Taxol 1 here, I'm getting so itchy hands. So itchy, tingling. Scalp has felt 'weird' and have started losing some hair now. I had already cut mine real short.

The itchy/tingling hands are driving me crazy though. ugh.

During the first 5 days of taxol #1, had something like a UTI, but after testing it was clear, so it wasn't a UTI but very bad bladder irritation. Ugh. I drank a lot of water too but it didn't seem to help.

Angtee15

Jodes--I am working part-time from home and seeing how it goes. Conference calls with bedhead!! So far so good. If I end up with radiation post surgery this summer I thought I should try and budget the FMLA time. I was going to use short term disability for surgery and not work at all during recovery. We shall see!!

Tesla

Newday123: I had itchy scalp and acnes on my chest, neck, back after #2 taxol. Got prescription antibiotic and cream to apply. it stopped new acnes coming out. Now just old acnes scabs healing. My NP called it taxol infused rash.

ThePrincess

If you're itchy take Claritin everyday, it really really helps! i Had it along my shoulders and felt like I looked like someone that had fleas! It really helps!

NewDay123

Thanks Tesla and ThePrincess!

Tresjoli2

angtee I had burning pee, and assumed it was the taxol...after a couple of weeks mentioned it to my doctor. Turned out to be a bladder infection that needed antibiotics. Didn't present like a typical bladder infection so I was surprised. It's a common issue while on taxol. Please get it checked ASAP!

homeschool4us

Just had my 3rd taxol today. It seems my weeks go liken this :

Day 1 (infusion day), 2 and mostly 3: I feel pretty darn good.

Days 4, 5, and 6: I feel deathly tired, have body aches and diarrhea.

Day 7: good again.

I also have bloody noses in there.

My eyelashes and eyebrows are half gone, but I had AC before this. They just started falling out this past week though. The only other place I still have any hair is on my arms. I also get itchy towards the end of the week cycle, but mine is more from eczema. My eczema responds so well to the steroid and then rebounds every time it wears off. My eyes are also very blurry now and weren't before. And my nose runs constantly. I nap about an hour most afternoons, but don't absolutely have to on those good days. Days 4, and especially 5 and 6, I feel like I'll die if I don't nap and can barely make it to the afternoon. I really hope that part doesn't get worse.

I would say for me the worst part of taxol is the exhaustion. I didn't experience it like this in AC. The aches and the big D are bad too, but tthere are meds that help those. Nothing can be done about the exhaustion.

I should add I'm anemic now to, rbc is 3.3 so that may b contributing.

Angtee15

Thanks Tresjoli! The burning has gone away but I am going to call the nurse tomorrow and let her know I had that symprom when I ask for a sleeping pill. Ugh! This insomnia

LM070917

I've just started taxol, got admInstered yesterday dose dense- so 3 hrs having a drip in my arm every two weeks. Day 1: less spacey than AC, here's hoping for an easier ride for the next 8 weeks.

Tresjoli2

My burning would come and go...it would burn worse in the am...that's why it took me so long to say something and I kept thinking it was just concentrated chemo pee. It's worth investigating...they just have u pee in a cup. Worth investigating.

ncsue927

Hello, everyone! I have been following this group for a couple of weeks,but I have officially joined the Weekly Taxol group today. I had my first of 12 weekly Taxol infusions. I finished AC on Dec 8 and had an extra week off to recoup my white counts so that I could get a flu shot before going back to work next week. Getting over that last AC infusion was a bear! I had everysingle SE I ever had plus one I had never had! I had a fever for over two weeks and my MO could not figure out why. I was on various antibiotics, blood culture, c Diff culture...nothing. It finally broke and we both decided that it was just my body trying to right itself after all the chemo, neupogen, procrit, etc. I was finally feeling better yesterday. I have been on short term disability since my surgery in August. I could not have worked while AC because my counts dropped so low and I work in Health Care. My MO assures me that my counts won't drop with Taxol. We'll see.

I asked what my premeds were with Taxol and was told they were the same as AC (Zofran, Decadron, Emend) except I don't get Emend, I get something that is the same as Pepcid. But I'm not sure.....I didn't have this much trouble sleeping before. I've been awake since 3 and I didn't go to sleep until after 11. This is going to be difficult when I go back to work. And I am still having night sweats. I also tried to eat myself silly today....which is good since I haven't been eating much at all the past two weeks and lost more weight. But, I don't want to gain it all back. I guess it will just be an adjustment to the new drug. Other than that....I feel better than on AC. I'm keeping my fingers crossed for my eyelashes and eyebrows. At this point, I don't really care if the rest of my hair falls out or not. I just don't think I have the skill to draw on eyebrows every day.

Thanks to all of you in this group. I've gotten a lot of information and support from following the past couple of weeks. I hope to see some others from my October group as we all move forward.

homeschool4us

Hi ncsue! Nice to see you here! I had chemo today (well yesterday now I guess) also and slept from midnight to 4:50am. This first night is the only night this seems to happen to me on taxol. The day after my infusion is usually my best of the entire week so I try to run all my errands today.

CyndiNic

Up early for Taxol #4 today - still on antibiotics and Prednisone (although weaning off) for the rash / acne from Taxol #2 and got extra Decadron to take last night and this morning in addition to the cocktail of meds they will give me. Happy to say my face is finally clearing up and much less embarrassing when I'm out in public. Of course yesterday was the best I have felt in 2 weeks and was pretty much headache free the whole day......just in time for another infusion.....but it was great to have a productive day.

Hair is coming out more easily. I have maxed out my out of pocket contribution for medical expenses in 2015 so I am looking to purchase a wig before the new year while it will cost me nothing out of pocket......$5500 in medical expenses is enough for one year. At least I had the option to move to a better plan for 2016.

Wishing everyone minimal SEs.......enjoy your day!!

Cyndi

ncsue927

Thanks, homeschool! Good to see some familiar "faces"! Hopefully tonight will be better. I do feel good today and am going to try to get some errands done. Waiting for it to stop raining!

d_lighted

Hi! I'm completely new to this group (and these boards!). Just finished 6 of 12 Taxol (with Herceptin and Perjeta every 4 weeks). After 4 rounds of AC, this seems much more manageable except for some un-fun side effects. I will admit that the one that is bothering me the most right this moment is ACNE. For some reason (perhaps because I'm 43 and I thought my days of zit cream were well behind me?!?) this is totally throwing me. Is it the chemo? the steriod? what should I do about it? FWIW I use a very gentle facial cleanser, almond oil, and no make up on my face. And I keep my pillow cases clean, just like my mamma taught me.

TIA! (Oh, and how do I set up that signature with all my info??

homeschool4us

Welcome d lighted! To set.up your signature, go to My Profile at the top. On the next page, go to both My diagnoses , and My treatments. After you have filled them out, go to my settings. Scroll quite a ways down to find each of your diagnoses MD treatments amd set each to public. Hope that helps!

jodes001

today i went from this...

to this.....

yesterday was tough! Shedding TONS...But I also bought an awesome, long beautiful wig that makes me feel spunky!!

going hat shopping now.....

Jodi

Opt4Life

Jodes, your hair looks lovely and healthy in both pics. I cut my hair extremely short pre-chemo. I'm on my 5th Taxol and it hasn't fallen out and is actually growing. I'm ready for this underarm and leg hair to go but it's unfortunatelyhanging in there too.

Sawyer

HI all; I was looking around for a forum today on TAXOL and found you all; hope its ok to join in..... I have one more AC chemo next week and then I have 12 weekly taxol's right after that....I have had quite a time with the side effects of the AC so I asked the nurse at chemo last week what to expect from the taxol and she wasn't really very positive that it would be a lot better. I lost my hair before chemo #2 and have struggled with the belly/"plumbing" and nausea along with the fatigue and bone pain from the Nulasta.

Looking for support and insight as I head forward towards the Taxol part of my fight.