Topic: Weekly Taxol group

Nov 28, 2021 01:58PM gb2115 wrote:

My head hurt each time before a major hair shed. I went through three major sheds, twice on AC and then once a couple of weeks into Taxol.

Nov 29, 2021 09:12AM KotchAJ wrote:

Hello all! It looks like those that posted had a good Thanksgiving. Yay!

I'm going to do a two weeks tomorrow post Taxol update for you all. The one thing that I feel fortunate for is the fatigue is starting to lessen. I had 4 days off this last week and I slept until almost 11 am. NOT normal for me at all in many years. I did wake up those days at my normal 6 am, but for some reason was able to go right back to sleep.

My taste is still off, but improving. I could only taste sour while on Taxol and it is improving even though it's not back to normal yet. I also lost 2 pounds this last week. I had told my friends I was ready to deliver my chemo baby as in bloated stomach which I assume is from the steroids I took for so many weeks. My face is still quite full looking and that will probably take more time to leave. I was overweight when I started this cancer journey, so I have plenty to lose.

Bloody nose is still happening, but not as bad as it was two weeks ago. I hope it completely stops soon.

Neuropathy, yep. Still there, but not as had as before. Fingertips are still tingly, but not quite completely numb as they had been, Feet are both still feeling it and I've been having some weird shooting pains through them. I just keep imagining that those are my nerve endings trying to come back.

My eyelashes are returning! Yay! This was a big one for me. My hair loss on my head was traumatic, but my eyelashes were worse for me. I have a few on each side and they just joined the party this last weekend. I hope that they continue to come back.

So, that's about it folks. Improvements in all areas as far as I'm concerned.

For those of you still on this Taxol train, you can do it. It will start to build in your body, but it will get better, too. I promise.

If anyone has any specific questions, I'm happy to answer.

Nov 30, 2021 12:41PM KotchAJ wrote:

1982-

You are almost done!! Congratulations! I'm already through menopause, but man do I remember that feeling before my period would start. Not fun. Of course, the only fun part about any of this is being able to connect with others that are going through it and understand itI do feel very thankful and grateful for this site.

I will say that first Monday after I was finished, when I would normally go in for bloodwork before work felt weird. I felt like I was missing something. I did go in on Tuesday over my lunch time like I used to when I would get my infusions, but it was to drop off a cake for my nurses there. They were surprised and I told them I'd miss seeing them each week. They were all so good to me. It felt weird to not have to stay there for an infusion! I got over it quick, though, lol.

My husband picked up something for my neuropathy called Nervive. It has B1, B6 and B12 in it. I've been taking it about a week now and honestly not sure if it's helping or just not being on the meds anymore is helping, but it might be something to look into? I'm sure there's a million and one things on the market for this type of thing.

Happy Tuesday everyone!

Dec 1, 2021 05:07AM gb2115 wrote:

Just to update, they did completely stop my Taxol because of what I would call mild but persistent neuropathy. She said because I can feel it all the time, if we kept going it would definitely get worse and it isn't worth it.

Dec 1, 2021 08:40AM KotchAJ wrote:

Hey AMG2!

Congratulations on getting through the chemo! The sour thing was just weird. My coffee is tasting weird still, but not as bad as before. I have noticed that I can no longer tolerate the Starbucks Christmas blend:-( It was my favorite for the holidays, but it smells absolutely horrible to me and the taste is off. I think that will be something I'm now officially done with forever. Oh well. If that's the only thing not so bad.

I go to the surgeon tomorrow afternoon after getting another mammogram and US tomorrow morning so he can decide what surgery to do. Since they found cancerous cells in two of my lymph nodes, I will be getting radiation, so please keep posting so I can know what to expect next. I think that it is so helpful to hear from others.

I've been given 4 weeks in between chemo and surgery and I'm so thankful for that time.

Dec 1, 2021 03:45PM - edited Dec 2, 2021 06:51AM by 1982M

gb2115-I'm sorry to hear your suddenly finished, especially with a recurrence. I can see why you wouldn't be thrilled about that. I hope your neuropathy heals

I asked the nurses today when it's considered a good idea to stop/dose reduce and she said it's pretty individual and up to the patient. She said generally is I can't do up my buttons or loose strength.

Mine is intermittent. There are days and times I don't feel it and days and times I do. I've had a few tingles in my feet but almost none, pretty rare. Hands come and go. Guess I'll just carry on since I'm done #11 out of #12.

Dec 2, 2021 06:51AM 1982M wrote:

Yeah, I’ve noticed particularly after chemo it’s gone for a few days and then comes back. I’m thinking it’s from the dexamethasone though. Unless it gets really bad this week I’m going to push on with only having one dose left. I still have muscle strength and can do up buttons and tie shoes etc. I hope that’s the right choice! I would hate to have permanent issues.

Dec 2, 2021 01:47PM KotchAJ wrote:

Yay gamzu710 !! That's great news that the slower rate helped. So glad to hear that. Every week seemed to be something different on Taxol for me. On AC I could kind of track my symptoms, not so much with Taxol.

I'm so glad that this is helping. You're more than halfway through now.

Dec 3, 2021 08:56PM - edited Dec 3, 2021 08:57PM by AMG2

gamzu, I'm so glad you got some relief!

1982M, my pattern was the same for coming and going with neuropathy, with it being mostly gone while the dexamethasone was in effect, then very present once it wore off, and I did have significant weakness. At two weeks out, I'm mostly back to normal. Still a little weak and wobbly when I'm very tired, but my feet are otherwise ok. My fingertips are still quite numb, and that was something that came at about week 6 and became persistent. Stuck my index finger in boiling water 2 days ago and felt nothing at all. (It's fine! I figured out it shouldn't be there before anything too bad happened). It's an issue that I hope will resolve.

Hair report: still no sign of significant body hair return. Eyebrows are still thin, but I started with ferocious eyebrows. Eyelashes never left and are still there.

Taste: I am REALLY enjoying eating!

Rash: fading. Chest and back are normal finally. Face still has some residual issues. I hate the rash.

Nosebleeds: gone, thank heavens.

Dec 4, 2021 10:36PM AMG2 wrote:

Roo, I'm so sorry you've been dealing with the dexamethasone roller coaster and nausea and vomiting. I'm glad you at least got some relief from the roller coaster, but vomiting, ugh. The 2 day mania followed by extreme sadness on days 3 and 4 following taxol really were a pain.

Dec 5, 2021 08:17AM 1982M wrote:

Oh Roo73, that rollercoaster sounds awful! I’m so grateful Wed is my last chemo and last dexamethasone.

Also, I laughed out loud about your Christmas cake comment. To funny.

Dec 8, 2021 01:54PM - edited Dec 9, 2021 10:25AM by 1982M

Thank you so much AGM2! I just started my dexamethasone. The nurse today is so very friendly, which is nice. I can't wait to not have to arrange rides and bring all the ice protocols!!!

I am feeling more tired this week then normal. Yesterday and today I felt very exhausted- hard to do the walking I usually do. Blood work though is good. Leukocytes, lymphocytes, and monocytes all low but nothing concerning low. Neutrophils are hemoglobin are fine and basically fine the whole time!

Neuropathy is less tingling and more numbness. It is generally fine a few days after treatment and more prevalent the days after.

I still have the rash under my butt cheek, but it's healing. Not very bothersome though anymore. A wee bit sore but only if it rubs on cloths. More good excuse to wear jogging pants! Lol.

I met the plastic surgeon and breast surgeon this week. Struggled a bit with it all. I don't feel like I have great options. I prob am going unilateral mastectomy with implant based reconstruction since I don't have tissue for a DIEP. Although I really wanted a re-excision and a oncoplastic reduction, they don't have a good way to mark the tissue for boost radiation. I asked specifically about how the radiation oncologist and breast surgeon oncologist communicate from surgery and they said they don't. They don't put clips in, they don't communicate. I don't feel ontologically safe with that choice bc of my age and Her2+.

The breast surgeon told me that my survivorship plan includes MRI q12 months and mammogram q12 months for the rest of my life if I keep the other breast but could re-evaluate if my breast density changes. Not sure how I feel about all of that. My husband thinks the double mastectomy is the best choice. Im not so sure. Im thinking unilateral and see how I feel going forward and then doing the other later potentially.

Im super happy to be done this first lag of treatment. Herceptin sounds nice- no premeds and just the infusion in and out. I do have call my Center in the morning of my appointment to let them know I will come to my appointment so they can mix the Herceptin. Not sure why but that's their processes

Edit: Today's post final treatment day 1- I slept pretty good. Chemo and steroids were later in the day, and I knocked myself out with Benadryl. I woke up at 2am briefly but right back to sleep. One thing I noted is that at-least twice I found they nurses had premixed my dexamethasone to 10mg. I didn't check it every time but I wonder how many times they maybe messed it up. Somewhat disappointed that there double checks weren't done. Anyways- that was my bone of contention. So advice if your changing your premeds- double check them with the nurse! The nurse yesterday also never heard of injections Herceptin. So prob not approved at my Center.

Dec 11, 2021 09:54PM - edited Dec 11, 2021 09:55PM by AMG2

Hi Gamzu, hope you're doing alright, and the skin issues aren't too horrid. I've been thinking of you, and wishing you could be done with the taxol, too.

I also came on here to mention, you know how it is said people can continue to lose eyebrows and lashes when taxol is all done? Well, it's true. My eyelashes are fine, but 3+ weeks post taxol, my eyebrows, which had been just somewhat thinner after 12 weeks of taxol now look like moths have been at them, and every day they look thinner. Oh well. :-/

Dec 12, 2021 05:19PM gamzu710 wrote:

Not having a particularly fun weekend. Upper respiratory infection has caused bilateral pinkeye. Fun fun! Woke up this morning with my eyes crusted shut with yellow goo and had to pry them open with my fingers and comb gunk out of my eyelashes. Yuck. Urgent care sent a prescription for antibiotic eyedrops, going to pick it up now. We're not sure if it's viral or bacterial but they suspect bacterial and I think they wanted to be cautious with a chemo patient anyway.

Interestingly, I was taking Advil this weekend because of the cold and noticed that I had a lot less face and chest acne than usually happens with the dexamethasone. Wondering why that would be.

Dec 13, 2021 03:20PM 1982M wrote:

Nina, sorry to hear of your lumpy head. I used Cetaphil to keep the pores clean on my baldy head. I don’t know if that would help though.