Topic: Back Pain - Weekly Taxol/Herceptin - Neuropathy?

Forum: Pain — Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Oct 13, 2022 05:38AM

Posted on: Oct 13, 2022 05:38AM

jh40 wrote:

I'm betting a lot of us have dealt with back pain during this treatment. I'm looking for experiences and advice.

I'd been moving through treatment with no pain/neuropathy up until round 6. Had a week delay in between round 7. Noticed during the week break that the center of my back is stiff, achy, and tends to hurt more when I'm stationary in a chair, and when I bend over. It's alleviated with movement/heat, but then it returns.

Is this neuropathy? I don't have any of the classic symptoms of neuropathy I've read about, but I don't know if it presents differently.

Surgery 6/16/2022 Mastectomy (Right): Simple Targeted Therapy 8/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.trazimera Chemotherapy 8/15/2022 Taxol (paclitaxel) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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Oct 13, 2022 01:30PM parakeetsrule wrote:

It doesn't sound like it. But the best thing to do is talk to your doctor.
Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Radiation Therapy 11/6/2017 Whole breast: Lymph nodes, Chest wall Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left)
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Oct 14, 2022 05:18AM - edited Oct 14, 2022 05:24AM by specialk

jh40 - all taxanes have bone pain as a side effect - some people have a lot, some a little, and some have none. I would think that is the more likely culprit. I had enough relief with OTC pain relief, a warm bath or shower, and localized heat via a microwaveable beanbag or heating pad. Let your MO know though. I did have mild neuropathy but it typically presents in extremities initially - fingers and fingertips, toes and bottoms of feet, and can creep up - but I also had it on my tongue/lips - which was an odd sensation, but it did go away between infusions. Hope you are doing well and back on schedule.

Edited to add - how are you receiving your Herceptin? If infused, you might inquire about the timing of the infusion - mine were all 90 minutes when I received it with chemo. The first time I had a stand-alone H infusion they did it over 30 minutes and I got some whopping hip/back discomfort. Like I had slept 8 hours on concrete, and it lasted a solid week. OTC pain meds really didn't touch it. I asked to slow the subsequent infusions back to 90 minutes and had no further issues. Infusion time can be a problem for some, not all, but I have seen it often enough here that I know it is a thing. Also important to note that even if you have tolerated a faster infusion to date it doesn't mean that it hasn't become a cause of pain now.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Oct 14, 2022 06:47AM jh40 wrote:

specialk - I'm back on schedule thankfully, yes. I found out they actually were giving infusions the week I was cancelled, but I'm pretty sure it was to prioritize the more at-risk. My PICC line was acting up for round 7; didn't want to give any blood so they had to get it from my wrist instead.

Prior to beginning chemo I soaked up as much info as possible from yourself and all the other contributors on here, and preemptively had all my infusions of Herceptin set to 90 minutes. I'm wondering if it is the culprit if they could run it even longer?

I emailed my APN (who might as well be my MO at this point) and he was very quick to respond. He referred to Taxane-related pain as myalgias and said they usually resolve after treatment. I think my anxiety here is whether or not that would be true for me and also if it's something else entirely? My mind did go to spinal metastasis but I've been trying to corral that thought.

I haven't had any obvious neuropathy in my hands or feet - knock on wood that holds. I do ice before, during, and after the Taxol infusion. I've also been dealing with some skin sensitivity in my legs and a very regular eyelid twitch, but I don't think that stuff counts, fortunately.

Surgery 6/16/2022 Mastectomy (Right): Simple Targeted Therapy 8/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.trazimera Chemotherapy 8/15/2022 Taxol (paclitaxel) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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Oct 14, 2022 07:05AM specialk wrote:

jh40 - glad you're back on schedule, but so sorry you are experiencing side effects that cause you worry. I have not seen anyone go longer than 90 mins for H infusions, but there is a first time for everything, right? Off the cuff, I am more suspicious about the taxane induced myalgia - with weekly dosing there often isn't time for that to "wear off" and it can also be cumulative. I have seen that to be the case with weekly - while you get a smaller dose - you get more of them on a tighter schedule. Each infusion won't necessarily contain the same side effects, you can have new ones as time goes on, some dissipate, and some get worse. Glad you are icing - I think that is dual purpose - protects the nails and can ward off neuropathy - to me, aside from short lived discomfort, it was a no-brainer. OMG - the eyelid twitch - definitely a chemo side effect. Mine would sometimes go at different speeds, which was crazy making. Once chemo was done that stopped, but it took a minute!

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Oct 14, 2022 03:40PM - edited Oct 14, 2022 03:45PM by jh40

specialk - the eyelids really are nuts. They get set off at the drop of a hat. How long did yours take to settle down?

Thanks for the advice about the possibility of the side effects being different from week to week. I'll try to keep that in mind when my thoughts abandon the logic ship. :)

The good news is the back pain seems to be easing up this evening. I think you and the APN are of right of course that the Taxol is the culprit. They run mine over an hour. Can the same logic apply here as with the Herceptin with a longer infusion time?

Surgery 6/16/2022 Mastectomy (Right): Simple Targeted Therapy 8/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.trazimera Chemotherapy 8/15/2022 Taxol (paclitaxel) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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Oct 21, 2022 05:28AM specialk wrote:

jh40 - sorry I missed your questions! The eyelid thing finally stopped - if I remember correctly - about 4-6 weeks after the final chemo, but I also had a multi-drug regimen, so maybe yours could stop sooner - we will hope for that! It wasn't a sudden stop but rather a more intermittent situation, and a slowing to where one day I noticed that it had stopped. My side effects in general seemed to be a moving target - just when I thought I had it figured out, it changed, lol! I have seen a slowing of infusion for patients who report allergic reactions on this site, but it never hurts to ask. Some centers don't like to slow infusion because it means you occupy the seat longer and it causes scheduling headaches. I did not find that to be the case with FCS, they accommodated my request for a slower H only infusion without batting an eye. Once I moved to H only I did tend to go late in the day though so that those who had multiple drug infusions could get started and done since their day was much longer.

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Oct 21, 2022 05:43AM jh40 wrote:

specialk - thanks for coming back to me! And yes, hopefully the twitches will stop sooner than 4-6 weeks!

I was thinking that once I moved onto Herceptin only I'd go later in the day as well.

The back pain continues but it certainly is a moving target. This last round (#8) it migrated up some, was less intense, and didn't linger as long. I've upped the length of time that I've been walking so maybe that's helped some.

My PICC line hasn't given blood the last 2 rounds, and I'm hoping they can sort it without another delay since it will take fluids. They put some Heparin in the line at the end of last treatment. I'm also hoping it isn't anything that'll require blood thinners for ages.

4 more to go, with #9 on Monday - fingers crossed they let me have it!

Surgery 6/16/2022 Mastectomy (Right): Simple Targeted Therapy 8/1/2022 translation missing: en.treatments.targeted_therapy.targeted_therapy_medicine.short_options.trazimera Chemotherapy 8/15/2022 Taxol (paclitaxel) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC

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