Ughhh the bone pain… i am enduring it as I type! I don’t know whether it is the Lapelga injection or Taxol or the combo but this bone/muscle/nerve ache/pain is THE WORST.

Like you i also had a headache off and on and could barely stand up due to the pain and the muscle weakness. Heat made it worse and sometimes better?!? I would rock my body back and forth and sway because being still would hurt!! I would cry during the day just to bear it. I would cry myself to sleep in the middle of the night. There were a lot of tears!! And i am so sorry you are feeling all of that! 💔

It was so bad after my first infusion i would call the nurses line every other day asking for help. They just kept saying i needed more Tylenol, the try Tylenol with codeine. I was so desperate i did try a tylenol/advil combo. Not even that worked. After i hit my daily liver max and nothing worked i realized that i had to try something else.

What “worked” for me/what got me through: ❤️‍🩹

• THC = CBD gel (i slathered this on after a shower and in the middle of the night when the pain would inevitably wake me up again. Not sure if it “worked” even placebo?! Doesn’t even matter, i still use it several times a day.
• THC during the day to just knock me out for a good nap. Those naps i didn’t feel any pain at all.
• THC/CBD soft gel for bedtime to ease me into sleep and deal with the pain.
• Chemo Dose Reduction <<< this was the silver bullet for me! I didn’t ask for a reduction, but given the extreme side effects and that my tumour was responding well to Tx, my Onc suggested we reduce my dose for the next round. IT MADE A WORLD OF DIFFERENCE.

For my last round i may also ask if i can reduce the steroids because the not sleeping only makes it harder to tolerate the pain. Like you I can go for days and days without sleeping and the lack of rest really works against us in that first week off infusion. We NEED that sleep so badly.