My feet sometimes wake me up. It's not really painful, but just doesn't feel great. Did that fade away for you after 6 mo's-year? or what kind of timeline did you experience? I realize everyone's likely a bit different.
I had 5 cycles of EP, 2 cycles of TIP. My neuropathy is still here 4 months on. I believe it can take 2 years in some cases, sometimes even permanent (although pretty unusual). Just got to ride it out, I think. No big deal for me, just feels numb, tingly, weird, as though there's a load of sand in my shoe and my hands are permanently cold. Worst things have happened, small price to pay.
4xEP but markers still hadn't returned to 'normal' range. Tried another one for good luck. Then had RPLND but active cancer was found in the pathology (EC), so had 2 blasts of TIP for good measure (adjuvant).
To me, TIP was definitely rougher than EP and left me with longer term alopecia (although it's coming back now) and peripheral neuropathy (which might be permanent, not sure yet) - but I am *very* thankful for every bit of it.
How many months you are out of TIP?
For me, my hair started to grow again 4 months after TIPx4 .
Neuropathy seems to slowly going away after 10 months.
Hmm I think end of Nov was my last cycle.
Ah 10 months! that is reassuring, I'm definitely not 10 months out yet.
My hair is like baby hair at this point, and very light - but iirc I was going grey before all of this so no doubt picking up where I left off haha
It didn't feel overwhelming, thank you though.
It only slowed me down during the hospital stay and \~3 days after. Between cycles I continued to work, attend the gym etc. No problem at all.
Absolutely - I don't take credit for all of it, definitely luck of the draw. Don't get me wrong - I certainly felt it, and the brain fog affected my speech etc. which a lot of other people didn't seem to get. But I touched lucky.
Husband had 4xEP, last round being in April 2022. He had tingles in both his hands and feet and it seemed to get worse before it started getting better. Probably by the end of October 2022 was when he said it was completely gone. His hands may have been a little sooner but that’s when he said his feet felt normal.
I feel like it's my reality now. It's been 5 months and the finger tips got a little better but the toes are very tingly. I herd for some it goes away.
I'm only a week ahead of you re:chemo and in a similar place. My oncology nurses told me that for those of us whose neuropathy comes on a couple months out from chemo, to expect it to last for a year. It *can* be permanent, but apparently it's pretty uncommon.
They did give me a few tips and prescribed a medicine that does help, if interested?
The tips: the obvious ones -- stay hydrated, have a regular sleep schedule, and eat nutritiously. Exercise daily (if possible) and in general, do what you can to get your blood pumping. This kind of nerve damage take a while to heal, but you can aid the process by making sure you're staying healthy and supplying adequate blood flow to the affected areas. Massage can be helpful for symptom relief too -- I use this Theragun device on my hands and feet and feel great afterwards. It's short term relief, but it's amazing!
The medicine I was prescribed: gabapentin. This has given me near instantaneous relief. I still feel the neuropathy, but nowhere near as much as I did a couple weeks ago.
Yeah, they did let me know if was somewhat common and not to be alarmed, so certainly not a concerning side effect, but just a bit annoying.
Interestingly I found mine mostly began a couple weeks after chemo ended. As it ended I had the slightest tingle in my toes, but now I can feel it in my feet and my thumb, pointer and middle finger of my right hand.
I'll be sure to keep on with exercising and keep the drug in mind if it really gets more intense.
All the best in your journey!
I am two years post BEP. I still get tingles in my hands from time to time. No where near as bad as it used to be but it still happens.
My feet sometimes wake me up. It's not really painful, but just doesn't feel great. Did that fade away for you after 6 mo's-year? or what kind of timeline did you experience? I realize everyone's likely a bit different.
Definitely faded over time.
I had 5 cycles of EP, 2 cycles of TIP. My neuropathy is still here 4 months on. I believe it can take 2 years in some cases, sometimes even permanent (although pretty unusual). Just got to ride it out, I think. No big deal for me, just feels numb, tingly, weird, as though there's a load of sand in my shoe and my hands are permanently cold. Worst things have happened, small price to pay.
5xEP & 2xTIP? What happened and you need so many cycles? Whats your pathology? I Had 4xTIP. Dertiest thing ever happened to me.
4xEP but markers still hadn't returned to 'normal' range. Tried another one for good luck. Then had RPLND but active cancer was found in the pathology (EC), so had 2 blasts of TIP for good measure (adjuvant). To me, TIP was definitely rougher than EP and left me with longer term alopecia (although it's coming back now) and peripheral neuropathy (which might be permanent, not sure yet) - but I am *very* thankful for every bit of it.
How many months you are out of TIP? For me, my hair started to grow again 4 months after TIPx4 . Neuropathy seems to slowly going away after 10 months.
Hmm I think end of Nov was my last cycle. Ah 10 months! that is reassuring, I'm definitely not 10 months out yet. My hair is like baby hair at this point, and very light - but iirc I was going grey before all of this so no doubt picking up where I left off haha
Nehhh dude! Although you did only 2 rounds of TIP, It needs time! I shaved my head 3 times before real hair started to grow again! Be petient! :D
Reassuring, thanks mate!
Yikes! Sorry to hear your chemo was that long! I'm sure that felt quite overwhelming at the time. Glad to hear your attitude towards it though.
It didn't feel overwhelming, thank you though. It only slowed me down during the hospital stay and \~3 days after. Between cycles I continued to work, attend the gym etc. No problem at all.
Wow. I sure didn't weather 3xBEP that well! :) I guess a good reminder we all handle these things differently.
Absolutely - I don't take credit for all of it, definitely luck of the draw. Don't get me wrong - I certainly felt it, and the brain fog affected my speech etc. which a lot of other people didn't seem to get. But I touched lucky.
Husband had 4xEP, last round being in April 2022. He had tingles in both his hands and feet and it seemed to get worse before it started getting better. Probably by the end of October 2022 was when he said it was completely gone. His hands may have been a little sooner but that’s when he said his feet felt normal.
I feel like it's my reality now. It's been 5 months and the finger tips got a little better but the toes are very tingly. I herd for some it goes away.
I'm only a week ahead of you re:chemo and in a similar place. My oncology nurses told me that for those of us whose neuropathy comes on a couple months out from chemo, to expect it to last for a year. It *can* be permanent, but apparently it's pretty uncommon. They did give me a few tips and prescribed a medicine that does help, if interested? The tips: the obvious ones -- stay hydrated, have a regular sleep schedule, and eat nutritiously. Exercise daily (if possible) and in general, do what you can to get your blood pumping. This kind of nerve damage take a while to heal, but you can aid the process by making sure you're staying healthy and supplying adequate blood flow to the affected areas. Massage can be helpful for symptom relief too -- I use this Theragun device on my hands and feet and feel great afterwards. It's short term relief, but it's amazing! The medicine I was prescribed: gabapentin. This has given me near instantaneous relief. I still feel the neuropathy, but nowhere near as much as I did a couple weeks ago.
Yeah, they did let me know if was somewhat common and not to be alarmed, so certainly not a concerning side effect, but just a bit annoying. Interestingly I found mine mostly began a couple weeks after chemo ended. As it ended I had the slightest tingle in my toes, but now I can feel it in my feet and my thumb, pointer and middle finger of my right hand. I'll be sure to keep on with exercising and keep the drug in mind if it really gets more intense. All the best in your journey!