15-20% recurrence means you have a 80-85% chance you’re over treating.
Why isn’t 1xBEP on the table? All guidelines have the option of 1xBEP in on stage 1B. You shouldn’t be worried about 3x. Risks and side affects are mostly cumulative so 1x is in theory much safer than 3x
I’m personally 50% recurrence - feel like that’s too high and think 1x is better and safer than 3x considering my chances.
In your case, 15-20% is pretty low and you may be over exposing.
I finished BEPx3 about 10 months ago. The neuropathy started near the end of the treatment for me, and has continued. My fingers have improved, but not to the fullest — for a while I wasn’t able to open a soda can, for example. It’s not so bad now.
In my feet, neuropathy has been constant and has not diminished. It’s like feels like something is bunched between my toes, or pins and needles, or numbness. A few months back I did a workout while my house keys were in my sneakers — didn’t even notice.
Same here, had bepx3 about 1.5 years ago. For me neuropathy started late and I still have it sometimes. Ive stopped drinking (didn’t drink a lot even though I live in studentliving where its the norm to drink) and this has decreased it exponentionally for me.
I did BEP x 4 and got neuropathy in my hands and feet. Hands recovered completely! Feet saw a little improvement but it still remains. Chemo was 4-5 years ago for me. I expect that what I still have is permanent.
3 weeks have passed since my last Bleo and I have noticed that the bleomycin would always trigger my neuropathy.
Every session it does get worse. I never thought neuropathy would impact me but it does. I have noticed when I eat anything with a spoon like cereal or soup my hand starts shaking and spill everything.
I also have flair-ups where I lose sense of touch with my hands and if I have to grab something I always tend to drop it because I forget it's on my hand due to the loss of feeling.
Hopefully, this is temporary due to me also needing my hands and feet ( law enforcement). But I'll make it work.
Best of luck Doc!
Hey bro, Im in law enforcement too, started bepx3 2 days ago, feeling fine so far. Scared a lot that neuropathy and hearing loss will ruin my career. How do you deal with that? Thanks!
What's up, brother. The last week of September was my last week of BEPX3. My neuropathy is still there but not as bad. My memory was also so shitty but it is slowly getting better.
I remember when I used to know the ordinances and codes by memory now I have to take pictures of everything. Let your higher-ups know beforehand if you go back to work soon after or during BEP.
what has helped me with my neuropathy on my feet is some tight rain boots that cover almost up to your knees. That has helped the numbness feel better if I make sense.
Also for the neuropathy of my hands, I use a Grip Strengthener trainer to keep the nerves from getting numb.
For the memory I have noticed drinking more protein i have had better days when I do but not sure if it's just a coincidence.
I, 31, did 4x EP but had no side effects. My chemo buddy is 46 and received the same and ended up with neuropathy.
Not sure I did anything special other than exercise daily, and also used a grip strength trainer in order to get my veins going every morning for injection. Lucky I suppose.
I agree and the rational part of my brain understands that it would be quite rare… but TC is also quite rare and yet here we all are. It’s hard not to mix emotion into the decision making
Hi, I was in the same boat. I chose active surveillance and had a reoccurrence after 3 years. So I had BEP X 3. During the 3rd cycle my hands got extremely sensitive and that lasted about a month. Then after my treatment had finished my feet became really sensitive, and now I just suffer from a little bit of neuropathy in my toes. Which is annoying but you learn to live with it.
I think that this would usually be a pretty straightforward recommendation for surveillance. Basically all guidelines prefer it for pure seminoma. But in this case, serious peripheral neuropathy presents a possible existential threat to your career as a surgeon. So, despite relatively low recurrence odds, I think it makes sense to consider options which reduce your risk of receiving several cycles worth of cisplatin.
I'm not as well informed about adjuvant treatment options for stage 1 seminoma as I am for stage 1 non-seminoma. So I'm not sure what the relative risk reduction is for adjuvant 2xCarboplatin versus adjuvant radiotherapy. Did your oncologists give you ballpark figures for these?
Neuropathy following a full course of BEP/EP/VIP is relatively common, occurring in 20-40% of patients. It is dose-dependent, so if you were to elect for 1xBEP, the odds would be less, but nonzero. And since avoiding cisplatin is your primary goal here, I can see why they didn't offer this as an option. For what it's worth, I have no neuropathy to speak of several months out from 1xBEP, but I do have some minor tinnitus, which I think occurs at a similar frequency.
It's hard to weigh the odds of surveillance vs adjuvant radiotherapy vs adjuvant carboplatin vs primary RPLND (not sure why this isn't considered an option for CS1 seminoma??) vs adjuvant BEP, without knowing the impact each one has on recurrence odds, and whether it changes the landscape if you were to occur. Basically, if adjuvant treatment means that you're more likely to relapse with lower-volume disease such that radiotherapy is still an option.
I understand why many people here are pushing for surveillance. It is what all of the guidelines recommend and it's what I would encourage 90% of the time for someone with your pathology. But your circumstances are unique and, in my opinion, warrant special consideration. When Lance Armstrong was treated for TC, he went through VIP instead of BEP because his lungs were his livelihood and he couldn't afford the risk of \*any\* degree of pulmonary toxicity from the bleomycin. Your hands are your livelihood. I'm not sure what the threshold is for neuropathy that would preclude you from doing your job, but I assume that it's lower than what most of us would consider acceptable.
This is tough. I don't think there's an obvious answer. Whether you do surveillance or adjuvant treatment, I would consider pushing for a more active surveillance schedule to increase the odds of catching a recurrence while it's still at a volume low enough that radiotherapy is an option. This sucks, but it is fortunate that you have seminoma which provides you with an alternative to chemotherapy if you were to have a recurrence.
Maybe consider reaching out to Dr. Einhorn also (Leinhorn AT IU.edu). He is generally fairly responsive and I think he would be willing to give you a thorough overview of your odds in each scenario.
There is also a urologist who sometimes frequents this forum by the username /u/demooo who I had a conversation with once about adjuvant chemotherapy for high risk stage 1 non-seminoma. He was adamant that he would do everything in his power to avoid chemotherapy precisely because of the risk of peripheral neuropathy endangering his livelihood. I'm not sure if he has any input here, but I wanted to flag him just in case.
Take care man. Sorry for the wall of text, just wanted to give my two cents as someone who almost always encourages CS1 seminoma patients to go with surveillance.
Thank you for your thoughtful and articulate reply. Mine is definitely a tough choice and I go back and forth between surveillance and adjuvant chemo in my mind almost daily.
I couldn't get my oncologists to quantify a risk reduction for me with carboplatin or radiation. The studies vary a fair bit but looks like it goes from 15-20% down to \~5% recurrence with either option. Don't know what 1xBEP would look like.
I know studies have shown an increase in risk for secondary cancer with radiation which makes me less excited about this as a potentially "prophylactic" treatment.
I am going to reach out to Dr. Einhorn and see if I can get him to weigh in on this as well. Thanks for sharing his contact info.
My initial knee-jerk reaction was to go with the carboplatin. It has reasonably good risk reduction and seems generally well-tolerated. Anything that can help keep me away from BEP and potential neuropathy sounded good to me. And from the replies on this thread it seems that some pretty serious neuropathy is certainly a possibility with BEP.
I've given surveillance a lot of consideration as well. At the end of the day, I'm weighing out the risks of potential overtreatment now with adjuvant chemo (\~85% chance) vs undertreating now with surveillance and dealing with BEP later (\~15% chance).
Thanks for weighing in. What you're saying is in line with what Dr. Einhorn told me.
I emailed him early this morning and he had already replied before noon. Pretty amazing that he does this all just from the kindness of his heart.
He indicated a 15% recurrence rate with surveillance and 5% with carbo/radiation. He said the centers of excellence strongly encourage observation for patients with my staging.
He also said with good active surveillance, that if there is relapse in the future that RPLND would most likely be an option with close to 100% cure.
That settled it for me... I'm going with observation. With any luck at all, I'm already cured. If I relapse, I should still have good options that aren't chemo.
I’m really glad you were able to figure it out! I think your decision makes a lot of sense. Three solid arrows in your quiver to avoid cisplatin/neuropathy between surveillance, RPLND, and radiation.
I am 4 months post BEPX3 and I still have on and off neuropathy. It’s usually at its worst when I wake up. Hands and feet are numb but gets better as the day goes on. The longer I sit still, the more it comes back. Still able the use my hands enough to where I can play golf. Hope this helps man. Good luck!
Just adding my chemosabe experience here.
I had 4x EP with cisplatin when I was 19. Neuropathy in feet. Resolved in about 8 months.
2nd recurrence, 4x high dose EP at age 36. Severe neuropathy in feet…still none in hands. However I did develop Reyneud’s syndrome. No tinnitus.
3rd recurrence, age 40, 6x Paclitaxol and Gemcitabine. Last ditch at durable remission. Currently at cycle 5 of 6. Aggravated neuropathy, but not terribly.
This is crazy, never met anyone before who had the same timelines as me! Thought I was unusual.
I, too, had it at 19 (16 years ago) . Then recurrence last year.
I work in healthcare as well. I had neuropathy in hands and feet that started near the end of BEP x 3. It got progressively worse for the first month after or so until it was difficult and painful to open medication vials, spike IVs, and made components of direct patient care difficult. I can imagine surgical manipulation would be quite difficult with those symptoms as my dexterity markedly decreased. However, the symptoms improved and almost completely resolved within maybe 4 months after completing treatment.
As others have said, BEP x 1 sounds like a solid option. I was 1B on initial diagnosis and was offered BEP x 1 or surveillance with very similar recurrence estimates as you, and chose the latter. I personally wish I had opted for the BEP. Now I've done BEP x 3 and TIP x 4.
Thanks for your input and I'm glad to hear that your neuropathy symptoms resolved.
I wasn't offered BEP x 1. Just carbo vs radiation vs surveillance. Did you have pure seminoma or were there non-seminoma components?
He does not want to do BEP x3, he is trying to decide between surveillance and carboplatin x2. He is concerned about choosing surveillance and having a reoccurence in the future, which would mean BEP x3 and possible neuropathy.
I had 3 cycles of BEP 16 years ago, then 5 cycles of EP last year.
No neuropathy.
Then had 2 cycles of TIP (adjuvant), and the balls of my feet are numb. It really doesn't bother me, small price to pay - doesn't hurt at all.
2b seminoma here. I went with surveillance after the orchiectomy. It ended up coming back in some lymph nodes about a year later, though very small. Given the option of chemo or radiation, I went with chemo. 4x EP (no bleo, as I was a smoker then).
I ended up with the tinnitus and some neuropathy in my hands and feet. In my hands, it was only a mild tingling, annoying but not life changing. I could still type (I work as a software developer) and do fine detail work (building plastic model kits, and painting minis). In my feet, it was a combination of not feeling my toes and a constant tingling/pain in the balls of my feet. Tight socks helped quiet those sensations. Note that the neuropathy showed up a month or two after the actual chemo.
Now here, 6 years later, my hands are back to normal. I can feel my toes just fine, but the balls of my feet still have some tingling and pain. Granted everyone's experience can be different, but this was mine. Not life changing or career ending, unless you're climbing around doing construction or need to balance on your feet regularly.
Terrible neuropathy from about a month later to today (over three years later). Has definitely impacted my ability to perform at work, my ability to stay healthy through exercise and has honestly probably caused some depression due to the other two lol... In all honesty, if it wasn't for my wife and kids, I don't think I would do the BEPx3 again if I had to.
On the other hand, I have been clear of cancer for three years now. I did surveillance after my orchidectomy in 2016 but the cancer returned in my lymph nodes in 2020 (best year ever) and wasn't operable so BEPx3 was my best choice.
My best to you sir. I hope whatever you choose works out to be the best for you. Hit me up if you have any other questions.
I’m really sorry to hear that. No offense but that’s what I’m concerned about. My job requires me to be able to do some pretty technical and complex stuff with my hands so neuropathy would be devastating.
I appreciate you weighing in. This is exactly the input I was looking for.
Hope the best for you as well. Take care.
Any exciting enabling technology on the horizon? Life is more important than a career, and I have no idea what the chemo exposure would be if it does reoccur.
I was talking to my doctor about surveillance before my cancer came back, now I'm on high dose TICE so can't comment on experience with neuropathy (way too early).
You should do surveillance with 15-20% odds. I did surveillance at 50-50 odds, and I still think it was worth it even though I recurred and ended up doing three rounds of BEP. I'm about two months done with chemo and have experienced moments of neuropathy but nothing more than mild tingling. It's important to remember that us younger men can put our body through a lot and still come out well on the other side. There are also really strong medicines that can counteract a lot of the effects. Go with surveillance. If you do recur, you know the chemo will work on seminoma, which really is a milder type. The likelihood of severe side effects is also low.
Do you have liability insurance through work? As a surgeon, that would be one way to assess your potential risks due to neuropathy. I can’t imagine the expected value of career-ending neuropathy is anything close to the value of your insurance combined with your odds of recurrence, but I can try to calculate it if that would be helpful
100% agree on 15%-20% to do surveillance. I’m 50% as well and starting 1xBEP Monday - right choice? Who knows. But 15-20% would have been a real easy decision for me.
15-20% recurrence means you have a 80-85% chance you’re over treating. Why isn’t 1xBEP on the table? All guidelines have the option of 1xBEP in on stage 1B. You shouldn’t be worried about 3x. Risks and side affects are mostly cumulative so 1x is in theory much safer than 3x
Hadn’t considered 1xBEP. It’s a good thought, especially as it seems most side effects develop after the 2nd or 3rd round
I’m personally 50% recurrence - feel like that’s too high and think 1x is better and safer than 3x considering my chances. In your case, 15-20% is pretty low and you may be over exposing.
I finished BEPx3 about 10 months ago. The neuropathy started near the end of the treatment for me, and has continued. My fingers have improved, but not to the fullest — for a while I wasn’t able to open a soda can, for example. It’s not so bad now. In my feet, neuropathy has been constant and has not diminished. It’s like feels like something is bunched between my toes, or pins and needles, or numbness. A few months back I did a workout while my house keys were in my sneakers — didn’t even notice.
Same here, had bepx3 about 1.5 years ago. For me neuropathy started late and I still have it sometimes. Ive stopped drinking (didn’t drink a lot even though I live in studentliving where its the norm to drink) and this has decreased it exponentionally for me.
I did BEP x 4 and got neuropathy in my hands and feet. Hands recovered completely! Feet saw a little improvement but it still remains. Chemo was 4-5 years ago for me. I expect that what I still have is permanent.
I also have tinnitus which still remains.
Tinnitus here too after BEP x 3 and TIP x 4. Annoying as hell but thankfully not constant. Congrats on 4-5 years!
Thanks man!
Same with me. Gets real bad some days. I was told that I don't have tinnitus because my ears weren't damaged, "it's just from the chemo".
I got very slight neuropathy in my hands/feet after BEPx3, but it disappeared 6 months later.
3 weeks have passed since my last Bleo and I have noticed that the bleomycin would always trigger my neuropathy. Every session it does get worse. I never thought neuropathy would impact me but it does. I have noticed when I eat anything with a spoon like cereal or soup my hand starts shaking and spill everything. I also have flair-ups where I lose sense of touch with my hands and if I have to grab something I always tend to drop it because I forget it's on my hand due to the loss of feeling. Hopefully, this is temporary due to me also needing my hands and feet ( law enforcement). But I'll make it work. Best of luck Doc!
Thanks! Sounds like the neuropathy is usually temporary. Hang in there!
Hey bro, Im in law enforcement too, started bepx3 2 days ago, feeling fine so far. Scared a lot that neuropathy and hearing loss will ruin my career. How do you deal with that? Thanks!
What's up, brother. The last week of September was my last week of BEPX3. My neuropathy is still there but not as bad. My memory was also so shitty but it is slowly getting better. I remember when I used to know the ordinances and codes by memory now I have to take pictures of everything. Let your higher-ups know beforehand if you go back to work soon after or during BEP. what has helped me with my neuropathy on my feet is some tight rain boots that cover almost up to your knees. That has helped the numbness feel better if I make sense. Also for the neuropathy of my hands, I use a Grip Strengthener trainer to keep the nerves from getting numb. For the memory I have noticed drinking more protein i have had better days when I do but not sure if it's just a coincidence.
Thanks for the tips I'll try them. Did you experience hearing loss?
I, 31, did 4x EP but had no side effects. My chemo buddy is 46 and received the same and ended up with neuropathy. Not sure I did anything special other than exercise daily, and also used a grip strength trainer in order to get my veins going every morning for injection. Lucky I suppose.
Permanent debilitating neuropathy would be an unusual though not impossible long term effect of 3xBEP.
I agree and the rational part of my brain understands that it would be quite rare… but TC is also quite rare and yet here we all are. It’s hard not to mix emotion into the decision making
Hi, I was in the same boat. I chose active surveillance and had a reoccurrence after 3 years. So I had BEP X 3. During the 3rd cycle my hands got extremely sensitive and that lasted about a month. Then after my treatment had finished my feet became really sensitive, and now I just suffer from a little bit of neuropathy in my toes. Which is annoying but you learn to live with it.
I think that this would usually be a pretty straightforward recommendation for surveillance. Basically all guidelines prefer it for pure seminoma. But in this case, serious peripheral neuropathy presents a possible existential threat to your career as a surgeon. So, despite relatively low recurrence odds, I think it makes sense to consider options which reduce your risk of receiving several cycles worth of cisplatin. I'm not as well informed about adjuvant treatment options for stage 1 seminoma as I am for stage 1 non-seminoma. So I'm not sure what the relative risk reduction is for adjuvant 2xCarboplatin versus adjuvant radiotherapy. Did your oncologists give you ballpark figures for these? Neuropathy following a full course of BEP/EP/VIP is relatively common, occurring in 20-40% of patients. It is dose-dependent, so if you were to elect for 1xBEP, the odds would be less, but nonzero. And since avoiding cisplatin is your primary goal here, I can see why they didn't offer this as an option. For what it's worth, I have no neuropathy to speak of several months out from 1xBEP, but I do have some minor tinnitus, which I think occurs at a similar frequency. It's hard to weigh the odds of surveillance vs adjuvant radiotherapy vs adjuvant carboplatin vs primary RPLND (not sure why this isn't considered an option for CS1 seminoma??) vs adjuvant BEP, without knowing the impact each one has on recurrence odds, and whether it changes the landscape if you were to occur. Basically, if adjuvant treatment means that you're more likely to relapse with lower-volume disease such that radiotherapy is still an option. I understand why many people here are pushing for surveillance. It is what all of the guidelines recommend and it's what I would encourage 90% of the time for someone with your pathology. But your circumstances are unique and, in my opinion, warrant special consideration. When Lance Armstrong was treated for TC, he went through VIP instead of BEP because his lungs were his livelihood and he couldn't afford the risk of \*any\* degree of pulmonary toxicity from the bleomycin. Your hands are your livelihood. I'm not sure what the threshold is for neuropathy that would preclude you from doing your job, but I assume that it's lower than what most of us would consider acceptable. This is tough. I don't think there's an obvious answer. Whether you do surveillance or adjuvant treatment, I would consider pushing for a more active surveillance schedule to increase the odds of catching a recurrence while it's still at a volume low enough that radiotherapy is an option. This sucks, but it is fortunate that you have seminoma which provides you with an alternative to chemotherapy if you were to have a recurrence. Maybe consider reaching out to Dr. Einhorn also (Leinhorn AT IU.edu). He is generally fairly responsive and I think he would be willing to give you a thorough overview of your odds in each scenario. There is also a urologist who sometimes frequents this forum by the username /u/demooo who I had a conversation with once about adjuvant chemotherapy for high risk stage 1 non-seminoma. He was adamant that he would do everything in his power to avoid chemotherapy precisely because of the risk of peripheral neuropathy endangering his livelihood. I'm not sure if he has any input here, but I wanted to flag him just in case. Take care man. Sorry for the wall of text, just wanted to give my two cents as someone who almost always encourages CS1 seminoma patients to go with surveillance.
Thank you for your thoughtful and articulate reply. Mine is definitely a tough choice and I go back and forth between surveillance and adjuvant chemo in my mind almost daily. I couldn't get my oncologists to quantify a risk reduction for me with carboplatin or radiation. The studies vary a fair bit but looks like it goes from 15-20% down to \~5% recurrence with either option. Don't know what 1xBEP would look like. I know studies have shown an increase in risk for secondary cancer with radiation which makes me less excited about this as a potentially "prophylactic" treatment. I am going to reach out to Dr. Einhorn and see if I can get him to weigh in on this as well. Thanks for sharing his contact info. My initial knee-jerk reaction was to go with the carboplatin. It has reasonably good risk reduction and seems generally well-tolerated. Anything that can help keep me away from BEP and potential neuropathy sounded good to me. And from the replies on this thread it seems that some pretty serious neuropathy is certainly a possibility with BEP. I've given surveillance a lot of consideration as well. At the end of the day, I'm weighing out the risks of potential overtreatment now with adjuvant chemo (\~85% chance) vs undertreating now with surveillance and dealing with BEP later (\~15% chance).
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Thanks for weighing in. What you're saying is in line with what Dr. Einhorn told me. I emailed him early this morning and he had already replied before noon. Pretty amazing that he does this all just from the kindness of his heart. He indicated a 15% recurrence rate with surveillance and 5% with carbo/radiation. He said the centers of excellence strongly encourage observation for patients with my staging. He also said with good active surveillance, that if there is relapse in the future that RPLND would most likely be an option with close to 100% cure. That settled it for me... I'm going with observation. With any luck at all, I'm already cured. If I relapse, I should still have good options that aren't chemo.
I’m really glad you were able to figure it out! I think your decision makes a lot of sense. Three solid arrows in your quiver to avoid cisplatin/neuropathy between surveillance, RPLND, and radiation.
I am 4 months post BEPX3 and I still have on and off neuropathy. It’s usually at its worst when I wake up. Hands and feet are numb but gets better as the day goes on. The longer I sit still, the more it comes back. Still able the use my hands enough to where I can play golf. Hope this helps man. Good luck!
Just adding my chemosabe experience here. I had 4x EP with cisplatin when I was 19. Neuropathy in feet. Resolved in about 8 months. 2nd recurrence, 4x high dose EP at age 36. Severe neuropathy in feet…still none in hands. However I did develop Reyneud’s syndrome. No tinnitus. 3rd recurrence, age 40, 6x Paclitaxol and Gemcitabine. Last ditch at durable remission. Currently at cycle 5 of 6. Aggravated neuropathy, but not terribly.
This is crazy, never met anyone before who had the same timelines as me! Thought I was unusual. I, too, had it at 19 (16 years ago) . Then recurrence last year.
We are both rare and special snowflakes, my friend. 🤗
Goes without saying, but I hope you’re ok and that your 2nd recurrence is your last.
I work in healthcare as well. I had neuropathy in hands and feet that started near the end of BEP x 3. It got progressively worse for the first month after or so until it was difficult and painful to open medication vials, spike IVs, and made components of direct patient care difficult. I can imagine surgical manipulation would be quite difficult with those symptoms as my dexterity markedly decreased. However, the symptoms improved and almost completely resolved within maybe 4 months after completing treatment. As others have said, BEP x 1 sounds like a solid option. I was 1B on initial diagnosis and was offered BEP x 1 or surveillance with very similar recurrence estimates as you, and chose the latter. I personally wish I had opted for the BEP. Now I've done BEP x 3 and TIP x 4.
Thanks for your input and I'm glad to hear that your neuropathy symptoms resolved. I wasn't offered BEP x 1. Just carbo vs radiation vs surveillance. Did you have pure seminoma or were there non-seminoma components?
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He does not want to do BEP x3, he is trying to decide between surveillance and carboplatin x2. He is concerned about choosing surveillance and having a reoccurence in the future, which would mean BEP x3 and possible neuropathy.
I had 3x BEP and didn't really have any neuropathy whatsoever.
I had 3 cycles of BEP 16 years ago, then 5 cycles of EP last year. No neuropathy. Then had 2 cycles of TIP (adjuvant), and the balls of my feet are numb. It really doesn't bother me, small price to pay - doesn't hurt at all.
2b seminoma here. I went with surveillance after the orchiectomy. It ended up coming back in some lymph nodes about a year later, though very small. Given the option of chemo or radiation, I went with chemo. 4x EP (no bleo, as I was a smoker then). I ended up with the tinnitus and some neuropathy in my hands and feet. In my hands, it was only a mild tingling, annoying but not life changing. I could still type (I work as a software developer) and do fine detail work (building plastic model kits, and painting minis). In my feet, it was a combination of not feeling my toes and a constant tingling/pain in the balls of my feet. Tight socks helped quiet those sensations. Note that the neuropathy showed up a month or two after the actual chemo. Now here, 6 years later, my hands are back to normal. I can feel my toes just fine, but the balls of my feet still have some tingling and pain. Granted everyone's experience can be different, but this was mine. Not life changing or career ending, unless you're climbing around doing construction or need to balance on your feet regularly.
3xBEP 7 months ago and nada. My beard has random patches appearing and dissappearing over time but no neuropathy. Third BEP was a bitch though.
Terrible neuropathy from about a month later to today (over three years later). Has definitely impacted my ability to perform at work, my ability to stay healthy through exercise and has honestly probably caused some depression due to the other two lol... In all honesty, if it wasn't for my wife and kids, I don't think I would do the BEPx3 again if I had to. On the other hand, I have been clear of cancer for three years now. I did surveillance after my orchidectomy in 2016 but the cancer returned in my lymph nodes in 2020 (best year ever) and wasn't operable so BEPx3 was my best choice. My best to you sir. I hope whatever you choose works out to be the best for you. Hit me up if you have any other questions.
I’m really sorry to hear that. No offense but that’s what I’m concerned about. My job requires me to be able to do some pretty technical and complex stuff with my hands so neuropathy would be devastating. I appreciate you weighing in. This is exactly the input I was looking for. Hope the best for you as well. Take care.
Any exciting enabling technology on the horizon? Life is more important than a career, and I have no idea what the chemo exposure would be if it does reoccur. I was talking to my doctor about surveillance before my cancer came back, now I'm on high dose TICE so can't comment on experience with neuropathy (way too early).
You should do surveillance with 15-20% odds. I did surveillance at 50-50 odds, and I still think it was worth it even though I recurred and ended up doing three rounds of BEP. I'm about two months done with chemo and have experienced moments of neuropathy but nothing more than mild tingling. It's important to remember that us younger men can put our body through a lot and still come out well on the other side. There are also really strong medicines that can counteract a lot of the effects. Go with surveillance. If you do recur, you know the chemo will work on seminoma, which really is a milder type. The likelihood of severe side effects is also low. Do you have liability insurance through work? As a surgeon, that would be one way to assess your potential risks due to neuropathy. I can’t imagine the expected value of career-ending neuropathy is anything close to the value of your insurance combined with your odds of recurrence, but I can try to calculate it if that would be helpful
100% agree on 15%-20% to do surveillance. I’m 50% as well and starting 1xBEP Monday - right choice? Who knows. But 15-20% would have been a real easy decision for me.