Topic: Starting Chemo April 2020

Jun 22, 2020 04:38AM BostonGal wrote:

Nan, This might be a double post but when I submitted my response to you, it disappeared! I'll try again!

I was told by my center that if I don't get a call back within 30 minutes I'm supposed to call back. I had one missed call back that was attributed to a change of shift and so my regular onocologist was notified and she called me. I'm glad your temp is down and hope it continues its way down and that you feel better asap if not right away!!!

Allie

Jun 30, 2020 02:55AM BostonGal wrote:

Kathryn,

I know you asked Katie to weigh in and she will but I've been on AC and Taxol and have something to say about nail changes and Hand and Foot Syndrome.

I've learned/heard that all nail changes will correct themselves eventually...

I had four sessions of AC during which I developed "Hand and Foot Syndrome" which I have trouble telling the difference from the nail changes you can get with Taxol. The hand and foot thing is like a mild sunburn (with some peeling...) to me at its worse which is a couple of days after AC chemo after the third and fourth session. It started with a little reddness and tenderness around a pinky after the first AC tho' Managed with lots of moisturizers, avoidance of things that will bug it (heat, pressure). It did spread to my inner thighs (so odd..) but that too has settled down.

I've had two sessions of Taxol and developed nail changes quickly: there are red discolorations and again, about two days after infusion, the nail beds get sore for about a day. I put lidocaine cream on them this past Saturday and it seemed to help! By Sunday, the pain was gone but the sensation in the nail beds is still off...

I iced during the second Taxol infusion but had trouble because the darn ice packs don't stay cold long enough! I am rethinking how I am doing the icing and will likely keep it up even tho' the jury is out whether it works and I am having trouble. No harm in trying something that might help I say and my chemo nurses are very supportive and tried to help me with giving me replacement ice packs and wrapping up my hands! This group has given me some specific suggestions too to try.

Allie

Jun 30, 2020 08:38AM jelloelloello wrote:

Ilovethemoon: Hello! Welcome to our group : )

I also had my weekly sessions of Taxol on Thursdays. Counting chemo day as Day 1, I felt great on Thursday and Friday (Days 1-2) because the steroids gave me energy and the other pre-meds blocked some of the other side effects.However, it was also very hard to sleep- usually only 2-3 hours a night- so keep that in mind for how productive you can be the next day. A few times, I started to feel the fatigue from coming down off steroids on Friday night (Day 2), but usually not. Usually, Saturday (Day 3) was when the soreness and fatigue started to hit me, but my "bad day" was Sunday (Day 4) for sure. On Monday (Day 5), I still felt low-energy and kinda sore for half of my weeks, but the other half were ok on Mondays. I called Tuesday and Wednesday (Days 6-7) my "good days."

I was lucky to be able to work a part-time (20 hrs/wk) schedule of my choosing, so I chose: Tuesday & Wednesday full days (8 hours each) and half-days on Friday mornings (4 hours). I would've worked on Thursdays but my chemo appointments weren't at consistent times for planning.

You'll find that most of us said the same thing about Days 3-5 being the hardest. With the exception of chemo day if you have any bad reactions, or another exception is if you have diarrhea (which can be any day, just depending on your body) and then any diarrhea day is a bad day, haha (but not really haha).

Hope this helps you! ~Jess

Jun 30, 2020 09:47AM ipenelope wrote:

Kathryn- My toe nail has not grown back yet or given any indication it will. During my guest round with chemo my great toe nails and 2nd toe nails became thick and sore, kinda like a fungal infection but it wasn't an infection. I soaked them frequently in a 50/50 vinegar and water mixture and it really helped with the soreness. None of my nails recovered or went anywhere close to back to normal after chemo. I never iced my nails.

Maybe try the foot soak to see if it helps at all. It's what my chemo center recommended for me.

Ilovethemoon- welcome!! My guest round of chemo was AC-T and I worked 4p hrs through all of it, thankfully! My day was also Thursday fit treatment. I would have the morning off from work then work the afternoon. Monday's and Tuesdays were a little challenging as I had a good amount of fatigue and pain still.

This time around my treatment is on Monday's. I work in public health and still work my 40 hrs weekly. Thankfully most of it is from home. I was out of work for 10 weeks due to surgery and COVID precautions due to the field I work, the treatment I'm in and the surgery I had (lung). I don't work in a hospital setting so I'm not sure how it would work to distance yourself, could you do reception/huc type work maybe during noc to get your hrs but not have direct patient care??

I hope everyone is doing good, and staying safe!! Keep up the fight to kick cancer's butt!!🥊🥊

~Katie💗

Jun 30, 2020 02:28PM hnsquared wrote:

Jess....I can’t wait to hear responses from the veterans. I just want to feel somewhat normal again. Or at least not like a bald, tired zombie 😂.

Heather

Jul 1, 2020 04:07AM LiseC wrote:

Ilovethemoon - welcome! I did taxol before AC, my 12th infusion was last Friday. I have been able to continue working (from home) throughout my treatment. I could go into the office if I had to, but I work for a university and they sent all nonessential employees home. I work Monday - Thursday and take Fridays off for my infusion. I felt fine on Friday and Saturday, Sunday I would start to experience some fatigue but Monday (day 4) was the worst day, especially near the end. On Mondays it was hard to focus due to the fatigue so I would put off any important work to Tuesday when I could focus a bit better. I will say the fatigue got progressively worse with each treatment, I felt completely normal until around round 9 or 10. It may be helpful to work earlier on in your infusions and save up some extra PTO for the end of your treatments. Hope that helps!

Jul 4, 2020 07:18AM Hurricaneblair wrote:

@wahoomama87 (aka Kris)....can you re-post how everyone can find our FB group?

It is soooo much easier to have “conversations” when we can respond directly under each post.

Thanks...Erin

Jul 5, 2020 12:35AM Sueshe55 wrote:

CCgirl I’m so sorry you had To go thru that. Do you get neulasta? Could the fever have been from that? Was your WBC elevated? I’m glad you stopped the antibiotics on your own. Hoping you feel better and #4 is a breeze. I rarely post here anymore on on FB in Allies group but felt I needed to reach out. Positive thoughts will get you through!! You’re almost there, take care RE/sueshe55

Jul 5, 2020 05:29AM wahoomama87 wrote:

Nan - so sorry you haven't felt well. That taxotere is giving me fits with the SE too. I feel you.

Kris

Jul 5, 2020 02:47PM ipenelope wrote:

Nan,

Did they say anything about being dehydrated?? That can definitely cause an elevated temp.

Im glad your back home and starting to feel better!! The weekend I get lots of steroids your sadly down and out 🤪🤪.

I hope everyone is doing good, have a great 4th of July, and stay safe!! Keep up the fight to kick cancer's butt!!🥊🥊

~Katie 💗

Jul 12, 2020 04:41AM NMJanet wrote:

Hello ladies! I'm new to this group so I've been reading through the messages and wanted to say hi!

Just had my 2nd round of paclitaxel out of 12. I'm receiving it once a week and started with a 50% dose the first time and 75% this last time. This next week will be 100%. I've had really bad luck with treatment this year so starting out slower on this one to make sure I could handle it. Started on Piqray in January and ended up in the hospital twice before they decided it was killing me rather than helping. While recovering from that, had radiation over a large area of my spine due to the collapsing disks and broken ribs causing so much pain. The radiation caused my esophagus to swell so much I couldn't eat or drink anything. Meanwhile, my blood tests and scans showed my cancer had spread to my liver and peritoneal cavity so I was put on Xeloda. Ended up back in the hospital and was taken off that! Now it's the Taxel and I seem to be doing okay on this. Yea!! Lost my hair quickly but it's the perfect time of the year for that to happen. : ) I do have fatigue and a little bit of muscle weakness in my legs but that's been happening most of this year. So glad to finally be on something that isn't trying to do me in faster than it helps! I have a real problem staying hydrated also so any suggestions would be appreciated! I think I drink a lot of fluids but apparently my body doesn't. : )

Thank you! So great to have this website to come to for encouragement and information!

Janet

Jul 13, 2020 07:10AM ipenelope wrote:

Janet,

Welcome and so sorry to hear the treatments that have been meant to help you get better have been making your life so rough!! I really hope Taxol works for you and does what your MO wants it to!!

J- love the idea of the 2 liter bottles!!

~Katie💗

Jul 20, 2020 11:34AM - edited Jul 20, 2020 11:41AM by BostonGal

Hi Janet,

Welcome! It's been a while since I've been on this site. I am normally on the FB site though.

I can't think of a specific suggestion about hydration...I think the prior suggestion is excellent about the water bottles.

I just make sure I track what I drink, etc. and make sure that I get at least 100 ounces per day (that may not be the right amount for other people but it seems to be what works for me). I also make sure that I get my fluids before I go to bed so that it limits how many times I have to get up during the night.

Allie