New user here Daniel_Eye from the Greater Boston Area

[Daniel_Eye]

Hi Joe

Glad to hear you're making it through the chemo okay. Everything has its ups and down but we'll make it out. Please do keep us updated as I'd like to hear how your experience is. I may go down that route as well.

[Davepet]

I'll be able to report further on the third cycle once I get further into it. I read RJKD's post above about the 3rd being the worst, so now I'm a little nervous about it too haha...but too late to turn back now.

In my experience, the only thing that was worse about the third cycle is the weekend after feelings lasted a few days longer, the intensity was about the same.

Dave

[Daniel_Eye]

Hi Dave

How are the longer lasting effects associated with the BEP impacting you? Have you felt any of the lung, nerve or possible heart issues?

By the way, just got my T level last night and it looks like I'm at [437ng/dL] which, according to the chart, says I'm in a normal range. Did you ever have any tissue or sperm samples taken prior to your second orchiectomy? I was speaking with the fertility urologist and he can do a procedure where he harvests sperm from a tissue sample...the rub? They need a testicular biopsy, which means another procedure to get the sample. I'm hoping that it is just a blockage and that he can clear that up, instead of doing a testicular biopsy. We shall see.

[Trekga]

JOEY~ Sorry to write this on Daniel's thread, but have been wondering about you. You started a week ahead of my son. Hope all is going ok.

[Davepet]

How are the longer lasting effects associated with the BEP impacting you? Have you felt any of the lung, nerve or possible heart issues?

I have some nueropathy Numbness, no pain) in my fingertips. It can get annoying at times, bt it seems to come & go. I also have tinnitus 24/7, but only notice it when I think about it now. No lasting lung problems. During chemo & for a month or so latter, I would get short of breath on exertion, but no problems once that cleared up.No heart issues at all.

.

Did you ever have any tissue or sperm samples taken prior to your second orchiectomy?.

Nope, my doc didn't think it was needed.

Dave

[Daniel_Eye]

Hi Friends

Just updating my status. I went for a CAT scan last week and had tumor markers checked. It looks like there are two more lymph nodes that are around the 1cm marker. The urology surgeon recommended chemotherapy and surgery after if needed. I met with the Genitourinary Oncologist and though my AFP and bHCG are moving down the presence of the two new nodes in my abdomen put me at stage IIb. I'm going to move forward with the 3 x BEP as primary treatment but first I am going to do sperm harvesting via testicular biopsy, do an audiology exam, then have the medi-port put in. I'm hoping to get all of it done within the next 10 days. I was hoping to cut down or avoid chemo but at this point, there's no going back. It is a tough pill to swallow but as long as my side-effects aren't too bad I think I'll be fine.

[Daniel_Eye]

I have some nueropathy Numbness, no pain) in my fingertips. It can get annoying at times, bt it seems to come & go. I also have tinnitus 24/7, but only notice it when I think about it now. No lasting lung problems. During chemo & for a month or so latter, I would get short of breath on exertion, but no problems once that cleared up.No heart issues at all.

.
Nope, my doc didn't think it was needed.

Dave

Good to know, I think I already have some tinnitus now so we'll see what they audiology results say. I'm going in tomorrow for that.

[RJKD]

Good to know, I think I already have some tinnitus now so we'll see what they audiology results say. I'm going in tomorrow for that.

While I am confident RPLND first is the superior approach (even in stage 2b cases with normal markers....despite NCCN guidelines), 3 x BEP will do it's job certainly. You might want to get a pulmonary function test as well. But most people tolerate 3 x BEP without any long term effect on their lungs.

[Daniel_Eye]

While I am confident RPLND first is the superior approach (even in stage 2b cases with normal markers....despite NCCN guidelines), 3 x BEP will do it's job certainly. You might want to get a pulmonary function test as well. But most people tolerate 3 x BEP without any long term effect on their lungs.

I got it done 2 weeks ago, everything looks A okay. Just had my hearing test today and that was fine as well. Getting my port and tissue sample biopsy done next week.

[Joe.shupe22]

Praying for you! Sucks that those nodes showed up, but 3x bep will take care of it. You got this .

[Daniel_Eye]

Small Update - on 3/9/17 I had some blood work done, AFP dropped to 2.4 from 3.9 and my LDH also dropped from 280 down to 253, bHCG

[Daniel_Eye]

Update - 3/21/2017 - Last Thursday I had my port put in and thank goodness for it. Taking labs and getting the medications though it is a like saver. No more needle sticks. I have my testes tissue biopsy for sperm aspiration done the next day... the first 2.5 days were complete hell, but I stayed on the pain meds and kept walking to a minimum. I recommend getting a urine basin to have handy when walking to the bathroom is too difficult. Also happy to say that they were able to freeze 3 vials of semen. I know it is not a lot but it gives me some chance at having children in the future.

Started my first cycle on Monday 3/20/17 I felt a slight bit of fatigue yesterday and a tab bit of nausea but the medicines help that. The only annoying thing is that I'm getting hiccup spells from the dexamethasone. Did anyone else experience this? Its super annoying and I'm wondering if I can switch drugs. I'll ask them tomorrow when I see them. This is my long week so I'm there all 5 days, then the next two weeks it's just Tuesday for chemo.
Cheers,
Daniel