Recently Diagnosed, Starting Chemo Soon...

[jersail]

Hello All,

While this is obviously not a forum anyone ever wants to join, I am now a member. I have spent quite a bit of time on this site and have found it to be extremely useful and informative, so thank you to the admins!

I’m a fit 32-year old guy with absolutely no medical history, until I was diagnosed with TC a few weeks ago on January 19^th. The diagnosis was actually well timed for me, as I spend all except 4 weeks per year traveling for work, usually in areas where there is no good medical care available.

I visited the a local emergency room for a painless, swollen left testicle, which ended up being diagnosed as a testicular mass with slightly elevated tumor markers. (AFP = 31, b-HCG = 1.5, LDH = 311.) I was discharged that night, and then underwent a left I/O on January 21^st.

Pathology results came back as a 4 cm non-seminoma, embryonal carcinoma, with a small amount of lymphovascular invasion. CT was normal, which makes me a stage 1. 10 days after surgery, my markers dropped to AFP = 9 and LDH = 209. Haven’t yet received b-HCG results.

I live in New Jersey, and was fortunate enough to get an appointment with Dr. David Vaughn at the University of Pennsylvania, which is a center of excellence. If anyone needs to see a TC expert in that area, I can’t recommend him highly enough – he is a great guy, very easy to talk to, and is basically a walking encyclopedia on the subject. We decided the best course of action was for me to undergo 1x cycle of BEP chemotherapy, which I will be starting on Monday via a PICC line.

I have already completed sperm banking, and everything else is arranged for the start of chemotherapy. I’d be curious to hear any tips or stories from anyone who has undergone BEP?

[Davepet]

Well, gotta say it: Welcome to the club no one wants to join.

Everybody's experience with chemo seems to be a bit different, but 1xBEP is not usually too difficult for most guys. Some tips:

- Stay well hydrated, especially on the long week I drank about a gallon of water a day, starting on my 40 minute commute to the infusion center. I pretty much needed to take a leak after every bag they hung.

- The IV anti-nausea meds were all I needed until the weekend after the long week. I only took the anti-nausea pills at the first sign of queasiness & I never got sick throughout treatment. Some guys prefer to take them on a regular basis like an antibiotic.

- You will lose your hair, seems like it was around week 3. I shaved as soon as it happened. Yours should be back pretty quickly with only one round, though.

- You will likely feel fatigued for a while. Sleep when you feel the need, you will not be able to fight it. Again, with one cycle, it shouldn't be too bad, but you will notice.

Well, that's off the top of my head, I'm sure others will chime in with their thoughts as well.

Dave

[JeskiM69]

Well I see Dave beat me to be the 1st person to respond to you while I spent 20 minutes typing my response below...lol.

I had a port, it was positionally sensitive. If I let my arm down too low it would cut off the line and stop the flow of meds. I was told it's a fairly common occurrence for a port. Not a huge deal but kinda frustrating. It was the only issue I had with my port. I can't say what kind of issues one may have with a PICC line so hopefully other may chime in on that.

Here's a recap of my first cycle of BEP.

Day 1: I had steriods, anti-emetics (Emend), 1L of saline followed by Etoposide and Cisplatin and then another 1L of saline. I was there from 8:30 AM till about 3 PM. The first day I had Zero symptoms. I felt 100% normal, like nothing happened. However I stayed up real late that night and couldn't get to sleep....that was from the Steroids
Day 2: That evening I felt a slight sensation in my abdomen...kinda like butterflies. Other than that I was 100% normal
Day 3: Took a short nap when I got home. went to bed a bit early that night
Day 4: Took a longer nap when I got home. Went to bed even earlier. First bit of Nausea that evening. Nothing too bad. Started Zofran that afternoon....take it every 8 hours.
Day 5: Sense of tastes was going awry, some foods started turning me off, I didn't eat much for breakfast. Starting to get noticeable fatique, nothing terrible, just more at all times. Took longer nap after I got home. Nausea was ramping up that evening. Barely ate dinner. went to sleep real early.
Day 6: I slept 18 hours that day. Didn't get out of bed till afternoon. Fatique was hitting pretty hard. Didn't eat too much. Could only stay awake for maybe 90 minutes at a time. Couldn't do much physical stuff wo getting real tired. Nausea was non stop. Had to stay on Zofran every 8 hours. Set alarm to wake me during the night to take the Zofran. Never puked.
Day 7: I slept 12 hours this day. I could go 3 hours at a time between naps. Slightly more physical activity. Nausea letting up a bit, still taking Zofran every 8 hours though. Appetite was starting to come back.
Day 8: Noticebly better. Appetite coming back. sense of smell and taste wasn't great though. Only took a short nap in the afternoon.
Day 9: Bleo only day. Got a "test" drop in tha back of my arm...burns like a mother. They gave me steroids, etc. then the Bleao for 35 minutes. Had flu like symptoms that night and some "shake and bake" (slight fever and chills). Didn't feel great, just kind like a slight flu.
Day 10: Felt like I had a cold. Went on Zofran for the day....just in case. Took a nap, went to bed early.
Day 11: Felt much better, kinda like Day 8
Day 12 - 15: recovering pretty well. No Nausea, Little fatique, appetite was getting close to normal. Tastes and smell coming back
Day 16: Bleo again. No side effects this time. However I had no immune system. My ANC was 0 and my WBC was 0.8.
Day 17: a one day setback to recovery, kinda like a slight flu again...never got the shake and bake this last bleo round....just slight flu like stuff....nothing too bad
Day 18 - 20: recovery. By day 19 I felt 100% normal
Day 21: Took a shower that morning....hair was falling out real fast, almost clogging the drain. Shaved my head after that and then took another shower. Put on a skull cap and went outside to hang with the neighbors, joke about my shaved head and had some beers.

I did go to work on Day 12 because I was bored at home. I didn't do much work....it was mostly a social outing for me. Then I learned that I should not have done that because my blood counts were tanking at that point and I could have gotten an infection. See day 16 comment.

Hope that helps.

All in all my Cycle 1 was not too bad at all looking back at it. I could do that standing on my head. However, I won't discuss Cycles 2 and 3 other than to say they were much, much worse. Also, everyone's experience with each cycle, etc is highly variable....some guys really struggle through cycle 1.

My best advice would be to prepare for the worst; then whatever happens, happens, and it probably will not be as bad as you imagined. Just take it one day at a time, one hour at a time and you'll be juts fine. Embrace chemo as your friend....it will kick cancer's @ss. Dont be scared of it.

- Matt

[RJKD]

Jersail, I underwent 1 x BEP in August. Feel free to PM me at anytime. Dr Vaughn is a well known TC expert. You have the best care in the world! I cannot argue against 1 x BEP as you have Embyronal, some LVI. I think you may be hitting it with just the right amount of chemo right now to kill it for good (of course you may be cured already). Most people tolerate 1 x BEP very well. The recovery is very quick as well so you don't have to worry about a long drawn out physical recovery. I did not have a PICC line. I simply had a IV line put in every day (7 infusion days). I felt a port was way overkill for 1 cycle and I also felt that the PICC was not needed either.

[RJKD]

By the way, the fact that you are starting chemo about 17 days after your I/O is great! You're hitting it hard and fast!

[Davepet]

Forgot about the Picc line. Had one for IV antibiotics back in 03.Showering is a pain and the potential for infection is much higher than a port. I think it makes sense for the 5 days of your long week with the heavy doses of meds, but maybe ask them to pull it at the end of that & just do a conventional stab for the two bleo-only days.

Dave

[biwi]

Honestly, I did 4 rounds of EP with IV's as an otherwise healthy 32 year old, the IV's really were not terrible. I do not have a fear of needles however. I only got double stuck 2 or 3 times out of what is that, ~20 IV's? I'd skip the PICC for 1xBEP. On the last week they told me I could actually keep IV's overnight for the immediate next day. They'd inject (I think) saline back into it, cap it off, and just bandage over it. The next day they'd just take off the bandage, flush it with saline, and then make sure it had good flow, and I was good to go.

You will get through 1xBEP no problem.

[Davepet]

The advantage of a picc line or port goes *way* beyond convenience or comfort. Feeding these potent chemicals into larger veins reduces the likelihood of damage to the veins. We have had many guys report such damage in here & if it can be avoided so easily, why wouldn't you want to do so?

Certainly a port for a 3 week course of treatment is overkil & a PICC line left in for three weeks when there is only two infusions the last two weeks seems not advisable either. Taking it easy on the veins for that first five days makes perfect sense to me, though.

Dave

[RJKD]

I'm interested to know what Dr Vaughn's feelings about an RPLND in your situation are? I recall in the past he was not a strong supporter of adjuvant chemo, but that was when 2 x BEP was the standard. I'm curious to know what was his thinking process regarding all the available options? I'm curious to know how the experts are thinking.

[Rickandsabri]

My husband recently finished 1x bep for stage 1b non seminoma (100 % EC). It was tough but he made it through, and despite the hair loss he's feeling pretty close to normal. He had a picc line which was a bit of a pain (showering, getting dressed, playing with our 6 year old) but it made getting treatment a breeze. Glad things are moving so quickly for you, best of luck.

[jersail]

Thank you all for the responses - definitely very helpful and amazing to see how active this forum is! Thanks to Matt especially - although I know the effects vary dramatically between individuals, it was nice to see a sample of one potential scenario.

I already have the PICC (put in Friday in preparation for the start of chemo on Monday) and the plan (as Dave suggested) is to keep it until Friday and then finish the remaining two days with regular IVs. I have no fear of needles so, yes, the whole thing could have been done by IV, but the reason was mainly to prevent vein damage (also as Dave mentioned.)

RJKD - to answer your question, I'm really trying to avoid RPLND surgery. It is major surgery, very invasive, with a long recovery time and still plenty of risks. Because none of my lymph nodes are enlarged on the CT, it really didn't seem like an appropriate method. Dr. Vaughn did mention it as a potential option, but he really didn't push for it at all. My choices really came down to surveillance or 1x BEP but because I travel a lot for work, surveillance was really not an option. Even if I didn't travel, I don't think I would like having to live in 3-month increments always thinking "what if...?" With the 1x BEP, statistically my chances of relapse should drop down to 5%, which I think are pretty good odds.

[RJKD]

jersail, it seems like 1 x BEP is a no brainer for you. It's nice to know Dr Vaughn is supportive. My guess is that he's impressed by the studies for 1 x BEP. You'll do well. The recovery is quick. Good luck and keep well!

[MamaLovesHerBoy]

My son had very few symptoms he wasn't able to address with meds and tolerate his first round. Second round was the toughest and the third he rallied a bit. As for port he went against the grain. His chemo had to be started asap. By the time the surgery for his port came up he was 1/3 of the way through. He and the oncologist decided to hold off on the port and he ended up completing 3xbep without one.

[jersail]

Just as a bit of an update, I am now in day 10 of my BEP cycle so 6 out of 7 infusion days are complete. My symptoms have been pretty minor for the most part - I've felt tired most of the time, but almost never nauseous. It's been a week of not doing much but laying around the house, but really I can't complain overall. The biggest issue I've had is a cold and cough which developed a few days ago, which is really annoying but tolerable. No hair loss yet, but I know it's probably coming.

I had a PICC line in for the first 5 days, and then they pulled it after the infusion on the 5th day. It was nice to have to be kind to my veins, and I didn't have any issues with infection, etc, but I was happy to see it go!

[Davepet]

Hair loss typically starts around day 15-16 if I recall correctly.