Taxol symptoms and help

Magnolia-mom · May 2018

I just had my 7th dose of Taxol. I'm curious what your symptoms of Taxol have been and how you have treated them.

My symptoms have been-

tingly hands and feet (especially bothersome when trying to sleep)

roaming sharp pains (last week they were all over my ribs which was scary, but also have been on my hip, jaw, leg bones-- my nurse practitioner said this sounded unusual to her, so am interested in learning more from others on this one in particular.)

aches in knees and tailbone

pain at the top of my thumb- what is that about??

Treatments-

I am only on steroids as IV premeds. They usually last me through the day after infusion, but I'm already getting tingles the morning after this round.

Advil- not helping

Thanks!

VL22 · May 2018

Hi Magnolia - first let me say that sometimes that “unusual “ line makes me want to scream. All it does is make you feel like your reaction is “wrong” and then your mind starts going to dark places.

I had a lot of muscle and bone pain throughout Taxol - ribs, back, jaw, hips - it just roamed around my body. And yes, my nurse and Dr called it “unusual”. Mine was at its worst when I finished Taxol - not to scare you but I had pain and discomfort issues for 3 months. At this point it was primarily my upper back and right shoulder.

I took the strongest over the counter pain pills I could and took them as often as allowed.

I finished up Taxol 5 months ago now and I feel great.

The tingling sounds like neuropathy to me, but I didn’t experience that. I know that it can be very serious.

Hugs.

anotherNYCGirl · May 2018

Hi Magnolia,

I was advised by one onc to eat foods that are rich in magnesium during taxol. (Mangoes are the one that I ate mostly.) I do think it helped. Worth a try!

Wishing you well!

Magnolia-mom · May 2018

VL22, thank you so much for assuring me these pains that this is not off the charts unusual symptoms! Sometimes I think the oncologists should be on these boards too. What pills did you take?

anotherNYCgirl- I will try foods with magnesium, thank you. I had a smoothie with mango this morning!

VL22 · May 2018

I think it was extra strength Advil. But I definitely got in a cycle of taking them and my MO was ok with it.

Magnolia-mom · May 2018

VL22- Did your team recommend scans because of these aches? My nurse practitioner scheduled a PET scan for my peace of mind. But all it does is increase my anxiety that she thinks this warrants a scan.

My pains went away with the steroids with my last infusion and then came back last night. My pains aren't so bad that I need a pain killer, they just make me feel anxious as to why I am having them- all over my rib cage and pelvis. They last about 5 seconds.

Anyone else who experienced these pains not just in feet/ legs and hands?

moth · May 2018

Magnolia - have you been reading the weekly taxol thread as well? People there have reported zinging pains that come & go, all over the body. For ex this 2013 post from ywheels https://community.breastcancer.org/forum/69/topics...

Have you told your MO about the tingling in your hands & feet? That is the first sign of neuropathy & sometimes they reduce dosage or recommend certain supplements if you start getting tingling so be sure to mention it.

lovepugs77 · May 2018

Magnolia, I did dose dense taxol last summer, and I had constant aches and shooting pains for a few days after each infusion. The first time, I wasn't expecting it so I didn't take anything early enough to get it under control. That weekend was miserable. When I told my MO, he recommended that I take an OTC painkiller (I think I took advil, but don't quite remember) starting the night before I expected the pain to start. That way I could get ahead of it. It worked pretty well for me. I was still achy after the infusions, but nowhere near as bad as that first one. My MO and nurse practitioner both said the pain was a common side effect from taxol, and that sometimes OTC painkillers aren't enough and they would prescribe something stronger if needed. I'm scared of strong painkillers, and just didn't think I needed them.

Make sure you tell your MO about the tingling - that's the first sign of neuropathy. I had it, too, and still have a slight numbness in my fingertips. My MO didn't reduce my dosage, but he did prescribe a supplement (Metanx) for it.

Magnolia-mom · May 2018

Yes, I told the nurse practitioner about my tingles. I don't think they will reduce dosage unless they get worse. It's not bothering me this round.

The pain around my ribs scares me because I had a bone scan a month ago with a small area that lit up on one of my ribs. My onc said not likely cancer, but rescreen in 2 months. And now I have pain all over my rib cage and only one spot on my hip. My lower back gets achy too. The pain isn't awful, just concerns me because of where it is.

MY NP scheduled me for a PET scan on Thursday "for peace of mind", but it is just getting me more worried waiting for it.

I have been trying to go through the Taxol thread, so many pages to get through!

Thank you Moth and Lovepugs!

Eschindler · May 2018

Hi- I just came across this thread. I am 10 taxol in, and I definitely have those zinging pains through my torso. My onc says they are muscle spasms, and has given me muscle relaxers (valium and/or flexoril) to take at night, when/if they're really bad. The meds help.

Best of luck!!

Magnolia-mom · May 2018

Thanks Eschindler, how long do your pains last in your torso? Do they keep hitting the same spots? Do they feel like they are on the bone?

anotherNYCGirl · May 2018

Magnolia-mom, - I was told to expect pain with the taxol, - to the point that I was given pain meds to have on hand, in case I needed them. Your onc didnt tell you that you may feel pain as opposed to the way AC felt? Does tylenol help?

For the tingles, - keep up the mango smoothies

Mucki1991 · May 2018

those zapping pains sound like neuropathy... Those tingles can increase for a few weeks after taxol treatment stops. Neuropathy can be permanent and terribly painful you may have to push to have your dose reduced

Magnolia-mom · May 2018

I don't feel like I have great communication with my onc. I only see him every 5 visits. There was a chemo intro my first day with a nurse practitioner, but the only thing I remembered hearing about Taxol was neuropathy. My NP said my pain in the torso was unusual, but she also seems a bit inexperienced. This is the second scan the NP has ordered for me when I wonder if it is better to just talk about my symptoms to see if they could be related to the chemo. Or at least ask the onc. It is a bit unnerving that she thinks that she thinks I'm so ready to metastasize that she needs to keep scanning.

Advil seems to take the edge off- haven't tried Tylenol.

Smoothies are good

lovepugs77 · May 2018

Magnolia, are you getting neulasta injections? I had a lot of upper body pain from those.

Magnolia-mom · May 2018

No neulasta injections

star2017 · May 2018

Hi MM, I had the 4 doses of Taxol, dose-dense, every two weeks, so it was a little different from your protocol. The day of and the day after my infusion, I felt great, but two days later I was miserable, achy, etc. And those pains lasted for 3-4 days. after noticing the pattern and conferring with doctors, I learned to take the pain meds preventatively. I did double doses of Aleve OR Advil at regular intervals, and added Tylenol if I needed something more in between. I was more comfortable and able to be a little more active.

star2017 · May 2018

btw, I saw my MO before EVERY infusion, so every two weeks.

star2017 · May 2018

also M I had weird lower back spasms about 5-7days after each infusion throughout chemo (AC and Taxol). The doctors were very confused by them. They stopped when chemo stopped.

Magnolia-mom · May 2018

Thank you Star for your input. It does seem like Taxol is more likely to cause aches when dose dense from my reading through the Taxol post. I live in a rapidly growing city and think we may need more oncology services to meet the growth. I’ve heard that this frequency of seeing their oncologist is the same for my local friends going through chemo. It is frustrating.

My pain has been achy from my mid to low back- both sides and flanks. My uterus gets cramps too. I noticed my legs were cramping yesterday, but that is not an unusual feeling to me because I like to exercise. I have only been walking, so likely the Taxol. Then I get these little hammer tapping pains to my ribs and hip bones. I had my PET scan this morning and will know resultstomorrow. Hoping this all is just Taxol!

Zenmushroom · June 2018

I've been using frozen gloves and frozen slippers to avoid neuropathy. I guess you already have it, but perhaps icing could prevent it from getting worse.

Aside from that I try to stay active, take a low level multivitamin and keep myself busy.

Symptoms have been: leg pain, headache, waking up a LOT to pee, hard time sleeping, bleeding easily (with nose bleeds and just in general), elevated liver enzymes.

But hey, this is still a breeze compared to AC.

Magnolia-mom · June 2018

Zenmushroom- fun name! Yes, I'm icing and actually my tingles were only for 2 cycles- hoping they don't return!

My PET scan came back clear for anyone else searching to see if these symptoms can be normal on Taxol. My NP was apparently a little worried. I guess this is my new normal? Stressing about tests and hoping they keep being clear? I am thankful that a lifetime of NED is still on the table.

Knowing these symptoms aren't mets will help me through the next 5 weeks. It isn't as bad as A/C. My NP suggested Tramadol when I asked about more pain relief. I'm going to keep using Advil unless it is really bad.

Thanks everyone!!

lizardesque · June 2018

I finished Taxol about a month ago, and I had symptoms pretty similar to yours. I iced my hands and feet during treatments to help minimize neuropathy, and from what I've heard, my neuropathy wasn't too bad--annoying but not debilitating. At this point, I still have numbness/tingling in three fingers of my dominant hand. The rest has subsided.

I also had (and continue to have) body aches. They are less frequent than they used to be now, though. For me, Tyelenol helped somewhat, but more than that, moving around and stretching helped the more than anything else. Of course, that's not especially helpful if it bothers you at night, unfortunately.

My fingertips also hurt (plus I had nail changes that go along with that). My nails are still ugly (and hence covered in polish), but the pain has subsided. My doctor recommended soaking my fingers in a mixture of 1 part white vinegar and 3 parts water for 10-15 minutes once or twice a day. I did that semi-regularly when the nail/finger issues got bad. It's hard to say if it helped or not, but it didn't hurt.

Magnolia-mom · June 2018

Thanks Lizardesque, I'm feeling better about the body aches after a clear scan. And also hearing that others have experienced the aches in a similar way. It was so scary hearing my NP tell me it wasn't something she had heard before and then order a scan. My neuropathy is getting worse on #8, but still manageable- tingles and some pain. I'm happy to hear it is getting better for you. Thank you for responding!

Taxol symptoms and help

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