Looking at 1xBEP, what can I expect?

[cartmanman717]

Hey guys,

I'm going to start a round of BEP in a few weeks. I know the side-effects, but would like some annedotal experience from the those of you that only took one cycle.

[RJKD]

I did one cycle. I found it tougher than I expected. I'm 10 months out now. My hair growth is still not back to normal. In terms of strength and endurance, you will recover this very quickly after completing treatment; I would say 3-4 weeks. I had pretty bad chemo brain for 3 months. I never got peripheral neuropathy or tinnitus. Only facial and head hair loss, not much of my body hair was lost. I was neutropenic for 2 weeks, but never got an infection. I didn't receive Neulasta either. You'll feel like crap towards the end of the long week and at the start of the second week. After that, you'll start to improve. I got some Bleomycin scratch marks; these are hyperpigmented marks on your skin if you scratch. These have not disappeared yet, although they seem to have faded. Some people get this, some people don't. I would avoid scratching or picking at your skin just in case. Who's your oncologist?

I didn't receive a PICC line or port. I think a port is over-kill. I think a PICC line for the long week may be a good idea though.

[cartmanman717]

I did one cycle. I found it tougher than I expected. I'm 10 months out now. My hair growth is still not back to normal. In terms of strength and endurance, you will recover this very quickly after completing treatment; I would say 3-4 weeks. I had pretty bad chemo brain for 3 months. I never got peripheral neuropathy or tinnitus. Only facial and head hair loss, not much of my body hair was lost. I was neutropenic for 2 weeks, but never got an infection. I didn't receive Neulasta either. You'll feel like crap towards the end of the long week and at the start of the second week. After that, you'll start to improve. I got some Bleomycin scratch marks; these are hyperpigmented marks on your skin if you scratch. These have not disappeared yet, although they seem to have faded. Some people get this, some people don't. I would avoid scratching or picking at your skin just in case. Who's your oncologist?

I didn't receive a PICC line or port. I think a port is over-kill. I think a PICC line for the long week may be a good idea though.

I saw Dr. Vaughn. I'm terrified of chemo-brain, and I think I'm going to try to get academic disability for it because I have high marks in college.

[RJKD]

I saw Dr. Vaughn. I'm terrified of chemo-brain, and I think I'm going to try to get academic disability for it because I have high marks in college.

I know someone that did 1 x BEP and did not have much chemo-brain. The effect of BEP can be quite variable. What was Dr. Vaughn's opinion on 1 x BEP? He's a very highly regarded oncologist! I know in the past he was against 2 x BEP for adjuvant therapy, so I'd like to know what his opinion was on 1 x BEP.

[cartmanman717]

I know someone that did 1 x BEP and did not have much chemo-brain. The effect of BEP can be quite variable. What was Dr. Vaughn's opinion on 1 x BEP? He's a very highly regarded oncologist! I know in the past he was against 2 x BEP for adjuvant therapy, so I'd like to know what his opinion was on 1 x BEP.

Well, he layed out all three choices (surv., chemo, and rplnd). He said he likes to follow Indiana's protocol over Sloan's. He prefers survillence, but with my risk of reoccurance, he felt comfortable with the bep. He did indeed state his uncertainity about bepx2. The logic is quite clear: if you do nothing at my risk level, you have a 50/50 or slightly worse chance of getting a reoccurence which would require bepx3 or epx4. If I choose the rplnd, it would be invasive and if you have any metastasis in remaining nodes or beyond them, your going to get bepx2 anyway. Lastly, BEPx1 will drop my reoccurence rate to about 1% and recent literature suggests its better at preventing reoccurence in non-sem 1b cases for the reasons I mentioned above and because of the often large volume of Embroyonal make-up. But, as you said, he doesn't feel great about 2 rounds because the literature has not prove of its efficacy as adjuvant therapy and if your in the 50% of patients who are cancer-free, then you are doubling the dose for no reason.

[RJKD]

Well, he layed out all three choices (surv., chemo, and rplnd). He said he likes to follow Indiana's protocol over Sloan's. He prefers survillence, but with my risk of reoccurance, he felt comfortable with the bep. He did indeed state his uncertainity about bepx2. The logic is quite clear: if you do nothing at my risk level, you have a 50/50 or slightly worse chance of getting a reoccurence which would require bepx3 or epx4. If I choose the rplnd, it would be invasive and if you have any metastasis in remaining nodes or beyond them, your going to get bepx2 anyway. Lastly, BEPx1 will drop my reoccurence rate to about 1% and recent literature suggests its better at preventing reoccurence in non-sem 1b cases for the reasons I mentioned above and because of the often large volume of Embroyonal make-up. But, as you said, he doesn't feel great about 2 rounds because the literature has not prove of its efficacy as adjuvant therapy and if your in the 50% of patients who are cancer-free, then you are doubling the dose for no reason.

Thanks! I always like to know how the best TC oncologists think. Interestingly, I thought exactly like he did when I peered into the literature and with my risk of relapse.

[biwi]

I saw Dr. Vaughn. I'm terrified of chemo-brain, and I think I'm going to try to get academic disability for it because I have high marks in college.

Personally 1xBEP will be annoying but I don't think I would have needed to postpone any college classes. Working through your college work may be a welcome distraction from what is going on. I didn't really feel strong chemo brain until the 3rd and 4th rounds (4xEP).

[JeskiM69]

Sounds like you are in very capable hands. Now that you gave more details on Dr. Vaughn's reasoning for 1xBEP it sounds like you are doing the best option with that high of a recurrence %.

I had 3xBEP but I can tell you that I don't remember any chemo brain in the first cycle. I do recall it in the 2nd cycle and it got much worse (comparatively) in the 3rd cycle.

I'd let the university know that you will be doing chemo.....you never know what can happen during chemo, it's best to be prepared just in case. Everyone has different experiences with the chemo. See what the Univ. can do for you.

- Matt

[Chemin]

My son was just starting his freshman year of college when he was diagnosed. He had BEP x 3 and did go on disability at college. It helped with deadlines on projects, tests, and another student did his note taking since he was home. He still had to complete every test and assignment . You get lots of extra time, but you are still expected to complete all your work. Chemo brain can last much longer then when you actually are getting the chemo, but hopefully one round won't be as bad for you.

[Rickandsabri]

My husband did 1 x BEP for stage 1b non seminoma in January. Six months out and he's back to normal physically. I have seen some personality changes in him, both positive and negative. The experience, from my viewpoint as caretaker, was surreal in the sense we didn't have much time to really absorb what was happening. We just put our trust in his oncologist and staff and muscled through. He had a few bad days dealing with fatigue and appetite issues but it passed. The hair and facial hair eventually all fell off and it took a while to grow it back, which bothered him as well. Now it's all back and he refuses to cut it! Best of luck to you. Bring someone with you to every session if you can. It makes the time go quicker and will keep your spirits up.