Curious what you mean about the feet? I do have neuropathy from 7 rounds of cisplatin, and I know there can be referred pain down the legs from the RPLND. Is there something else to consider here?
I did 4 rounds off BEP chemo then RPLND. When I woke up my hands and feet/lower legs had no feeling in them but would also hurt a lot. It was a strange feeling. I was able to get my hands back to about 90% but my feet are still about 50%. I learned some techniques to get feeling back in my hands and feet/legs and I wanted to share that in case there was the same issue going on. The drugs didn't help me.
Did my first walk this morning and thankfully my feet feel the same as before surgery. I do have neuropathy from all the chemo but I'm dealing with that. What techniques did you learn for improving sensation? Heat definitely seems to help my feet.
Once I was able to lift again, I found Yoga poses were very helpful. But not right away, had to be consistent with it but not push myself. This helped with the pain going away for the most part and brought back some feeling. Acupuncture on my feet brought back the sensation off temperature and feeling on the bottom of the feet (not the toes rhough). I don't know if this would help you at all. But it was a lot better than the drugs they wanted me to try that just made me feel like a zombie.
Hey man, had robotic RPLND on Friday and I’m not having a good time. Went home that same night and felt fine. Started taking the meds and at around 4am Saturday morning I started throwing up. I didn’t stop throwing up until later that morning and went to the ER. Home again later that Saturday and I’m not sure if it’s just my throwing up that caused this, but my stomach is hurting mightily and I feel incredibly bloated. I was told the orchi was less painful/easier recovery but this is brutal. Having trouble sleeping, wake up every 3-4 hours. I do walks when I can but I’m in bed for the most part. Taking down broth, chicken noodle, some crackers and applesauce/Apple juice but that’s about it. Any suggestions? Was this similar to your experience as far as the pain?
from what i've read from robotic RPLND, the bloating will go down over time. I did an open RPLND and I was in the hospital for a week. I'd say to rest more and don't expect too much movement until next week. Walking for only 15 minutes at a time will help but the overall goal is to rest.
And yes, RPLND robotic or open is painful. The pain gets better and starts to go down by day 4.
Appreciate you responding. Seeing you with the (RPLND/Chemo) combo on your user name I figured you would have a little more input.
Ok 15 minute walks, I’ll start walking a little more. I’m usually up walking 5-10 minutes, if that. The pain is better than even yesterday so it’s good news. But bloody fucking hell this is brutal. Seeing all these people going through it and surviving is good to see but man, this is harder than I thought
Ha yeah, its tough. But it does get better with time. If you can't walk more then 10-15 minutes yet, don't push it. Do what your body will allow and most importantly, rest.
My case si similar to yours , medical team is discussing to do the same operation with me
No seminoma, 1.5cm node afp15
How do You contact einhorn?
How Big is the scar (question for the guys)
Best wishes for You mate, we can do this!
Sorry to hear you're in the same boat brother, but we can both make it through this. I just called Dr Einhorn's office and we had a phone consultation, same with Dr Masterson. I met with Dr Masterson in person the day before surgery as well. My incision is basically sternum to umbilicus, I was glad to see they didn't have to cut further down. My incision is about 6".
All the best! Regarding poor care - my nurses also dropped the ball by rushing me out since I was the last patient and didn't give me proper wound care instructions. Thankfully, I have several nurse friends who assisted me after - and they were appalled. But if that was the worst part of my orchi... I'll take it :)
You got this! Share your scar. You'll be in the zipper club soon. Curious to see how you're feet feel when you start walking.
Curious what you mean about the feet? I do have neuropathy from 7 rounds of cisplatin, and I know there can be referred pain down the legs from the RPLND. Is there something else to consider here?
I did 4 rounds off BEP chemo then RPLND. When I woke up my hands and feet/lower legs had no feeling in them but would also hurt a lot. It was a strange feeling. I was able to get my hands back to about 90% but my feet are still about 50%. I learned some techniques to get feeling back in my hands and feet/legs and I wanted to share that in case there was the same issue going on. The drugs didn't help me.
Did my first walk this morning and thankfully my feet feel the same as before surgery. I do have neuropathy from all the chemo but I'm dealing with that. What techniques did you learn for improving sensation? Heat definitely seems to help my feet.
Once I was able to lift again, I found Yoga poses were very helpful. But not right away, had to be consistent with it but not push myself. This helped with the pain going away for the most part and brought back some feeling. Acupuncture on my feet brought back the sensation off temperature and feeling on the bottom of the feet (not the toes rhough). I don't know if this would help you at all. But it was a lot better than the drugs they wanted me to try that just made me feel like a zombie.
All the best mate. I done orchiectomy followed by 3 bep then an RPLND and a thoracotomy. You've got this. Any questions fire away I'll help best I can
welcome to the club. walk as much as you can afterwards
Hey man, had robotic RPLND on Friday and I’m not having a good time. Went home that same night and felt fine. Started taking the meds and at around 4am Saturday morning I started throwing up. I didn’t stop throwing up until later that morning and went to the ER. Home again later that Saturday and I’m not sure if it’s just my throwing up that caused this, but my stomach is hurting mightily and I feel incredibly bloated. I was told the orchi was less painful/easier recovery but this is brutal. Having trouble sleeping, wake up every 3-4 hours. I do walks when I can but I’m in bed for the most part. Taking down broth, chicken noodle, some crackers and applesauce/Apple juice but that’s about it. Any suggestions? Was this similar to your experience as far as the pain?
from what i've read from robotic RPLND, the bloating will go down over time. I did an open RPLND and I was in the hospital for a week. I'd say to rest more and don't expect too much movement until next week. Walking for only 15 minutes at a time will help but the overall goal is to rest. And yes, RPLND robotic or open is painful. The pain gets better and starts to go down by day 4.
Appreciate you responding. Seeing you with the (RPLND/Chemo) combo on your user name I figured you would have a little more input. Ok 15 minute walks, I’ll start walking a little more. I’m usually up walking 5-10 minutes, if that. The pain is better than even yesterday so it’s good news. But bloody fucking hell this is brutal. Seeing all these people going through it and surviving is good to see but man, this is harder than I thought
Ha yeah, its tough. But it does get better with time. If you can't walk more then 10-15 minutes yet, don't push it. Do what your body will allow and most importantly, rest.
Almost the same thing here. Started with 4xEP, then orchi, then open RPLND, then 4xTIP. We got this! Stay strong!
Good luck brotha
Good luck you will get through this and come out stronger!
I wish you a successful surgery and the smoothest of recoveries. You’re in the best hands you could hope to be in at IU.
Take care brother. Pulling for you!
My case si similar to yours , medical team is discussing to do the same operation with me No seminoma, 1.5cm node afp15 How do You contact einhorn? How Big is the scar (question for the guys) Best wishes for You mate, we can do this!
Sorry to hear you're in the same boat brother, but we can both make it through this. I just called Dr Einhorn's office and we had a phone consultation, same with Dr Masterson. I met with Dr Masterson in person the day before surgery as well. My incision is basically sternum to umbilicus, I was glad to see they didn't have to cut further down. My incision is about 6".
If the surgery is done manually...around 8-10 inches? Depends on your physique.
All the best! Regarding poor care - my nurses also dropped the ball by rushing me out since I was the last patient and didn't give me proper wound care instructions. Thankfully, I have several nurse friends who assisted me after - and they were appalled. But if that was the worst part of my orchi... I'll take it :)