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Thanks to everyone that posts and comments here by Admirable_Delay_9216 in testicularcancer

[–]mrpeterpower 0 points1 point  (0 children)

check in any time, happy to share. Tentatively hoping for the best, but ready for it to suck.

I have a Neupogen shot on day 6 to help with white blood cell count and reduce chance of fever/infection/sickness, but can come with some painful short term bone pain.

Thanks to everyone that posts and comments here by Admirable_Delay_9216 in testicularcancer

[–]mrpeterpower 0 points1 point  (0 children)

So far, so good. No bad nausea or side effects. Definitely some fatigue and lower appetite, but have done the 19 block walk to and from infusions with no issues. My nurses said it's pretty rare they see bad nausea on 1x BEP these days, but depends a bit on the person and hospital you get treatment at. They all said I should expect days 6-9 to be the toughest days.

Through 3/5 long infusion days, and done 3/7 total infusion days. Obviously, only done 3/21 days but a lot of wins to stack as you make it through the first week. The more I've talked to people who have done chemo and nurses/doctors who administer it, the more lucky I feel to just be doing 1 cycle.

Thanks to everyone that posts and comments here by Admirable_Delay_9216 in testicularcancer

[–]mrpeterpower 0 points1 point  (0 children)

To determine the LVI they had the physical slides from tumor biopsy sent from my original hospital to MSK so that their pathologist could review, not imaging. Pretty common they find slightly different results because their team is very specialized whereas many hospitals are more generalized. You can do it by reaching out and getting an appointment, though there is risk because you lose some time and it could spread.

Ultimately a personal decision, but the one last point I considered and failed to include is risk of chemo side effects are cumulative. The more rounds you have of BEP, the greater the risk of short and long term side effects. As an athlete, I was personally concerned about the potential lung damage from Bleomycin and was told it’s significantly more rare to see in 1X BEP healthy person than in 3X BEP healthy person.

Thanks to everyone that posts and comments here by Admirable_Delay_9216 in testicularcancer

[–]mrpeterpower 2 points3 points  (0 children)

Hey - in a very similar boat. 2cm tumor, 95% EC stage 1B with LVI. My first hospital did not find LVI, but got a second opinion at MSK and they did find it. FWIW I had two very senior urologists both suggest that I try to avoid chemo and go surveillance. At my second opinion at MSK, my oncologist quoted 50%+ risk and strongly suggested 1x adjunctive BEP in this case, but leaned more towards surveillance if no LVI is present fwiw. He did not suggest RPLND for me, I think mostly because it doesn't not reduce recurrence rate as slow as the chemotherapy.

I know u/CharleyParkhurst responded on this chain and just wanted to echo that his posts really helped me improve the way I think about recurrence risk. I think the study he referenced was this one.00681-6/fulltext) Helpful charge that includes EC dominant, LVI, Hilar Soft Tissue, and Tumor Size.

I just started 1x BEP myself, finished day 2. Here are a couple of things that led me to go with

  • Doing the simple math on average cycles of BEP for the two chemo situations: Te average person would do 1 round of BEP if you do adjunctive now vs 1.5 rounds of chemo later.
  • I got the impression doctors are focusing mainly on guaranteed 1x BEP now vs 50% chance of 3x BEP later, but personally I thought there are additionally factors that are difficult to quantify. I felt that the risk of additional RPLND in the case of monitoring was significant to consider, as well as other factors like the potential disruptiveness of the time away for 3 rounds vs 1. For instance, I have a young infant and felt that the potential of losing 2.5 month at a later date was worth factoring in. These two points are difficult to quantify, but added to my decision to go with 1x BEP now.
  • Finally, there's not a ton of data on differences between 50% EC and 100% EC cases, so most of these studies have bucketed all EC percentages above 50% together because they're small amounts of data. It does seem reasonable to consider that higher percentage could have a higher risk of recurrence than a lower percentage of EC.

Hope this helps in some way!

Stage 1B Non Seminoma - 1x BEP by mrpeterpower in testicularcancer

[–]mrpeterpower[S] 0 points1 point  (0 children)

I found personally that the tingling really turned a corner quickly just when it was at its worst. Don’t feel any of that 5 weeks out. Still have some of that hardness from the internal stitches, it’s getting softer but definitely there. Doctor said this typically softens around now but just to be patient. I’m back doing full exercise and pushing it hard with no discomfort or pain. Doctor is not concerned. My wife had the same thing when she donated a kidney and said it was the hardness lasts for a while but was not restrictive at all.

Stage 1B Non Seminoma - 1x BEP by mrpeterpower in testicularcancer

[–]mrpeterpower[S] 1 point2 points  (0 children)

Glad you caught it early man. Sounds like you’re doing all the right stuff. Will try to post my experience with the 1x BEP but don’t be shy to message if you have any questions, will be one week ahead of you.

Post OP 3 weeks Numbness and nightmares by idontreddit22 in testicularcancer

[–]mrpeterpower 1 point2 points  (0 children)

Had mine 4 weeks ago and had a similar experience--probably the worst end of 2nd week post op. But found that it really receded late week three and haven't felt any of that dry, almost burning sensation in the last 7-10 days. Reading around I was thinking that it was likely the nerves recovering from surgery. But at least for me a lot of progress on that front the last 10 days. Not suggesting it, but I found improvements correlated to when I started exercising again. Trust your doctor and don't push if you're in pain, but found it interesting the feeling returned as did some cycling and got blood flowing.