New, First Post, Experiences with BEP?

[bdubbs78]

Hi everyone. I am newly diagnosed (8/07), my stats are below (I hope). I don't know if this is a hot topic on this board or not (I would think so but i don't see it anywhere) - NS stage I clinical with vascular invasion but clean CT- to wait it out (probably not) vs. 2 BEP vs. the RPLND. My doctors are leaning to the 2 cycles of BEP. I have concerns mostly about long-term effects particularly on the lungs and pulmonary since I am a runner. Any insight or experiences with 2 cycles BEP appreciated, particularly about what I can expect side-effect wise.

[Already Bald]

Hi Bdubbs78,
Let me be the first to welcome you to the forums- more will follow for sure.
I think you should go RPLND, but that's me- I believe anything you can do to avoid future chemo is a plan.
EC is kind of agressive, and may skip the nodes- still though- I hate to see anyone take unnessary chemo when it is unknown if it is needed.
Either way, you have a highlt treatable disease, and will surely run again.
Best,

[Karen]

Welcome bdubbs. Sorry you had to join, but you will find yourself in good company here. The higher the % of embryonal carcinoma the more chance it has spread beyond the testicle. Even though you are stage 1, you have vacsular invasion so the chance of micrometastesis is greater. Hit it hard and hit it fast, taht's my motto. You may also be able to do EP...perhaps another round, and skip the bleo.

Where are you located? I strongly suggest a second opinion form a center of excellence...even via e-mail or phone. A great source of information can be found at http://tcrc.acor.org and the guys here who have been there, done that will help you through this.

Ask whatever you want, vent whatever you need to emotionally. You caught it early and are moving fast...good for you!

[petep]

Hi -

I ended up with 3 BEP...initially no invasion, surveillance...but then an enlarged node...see my path below...

I swim & run and could not tell you any difference today versus pre-chemo...it took me several months before I could run without cramping up (legs)....but I was still getting back to normal...

definitely agree with karen on the 2nd opinion...

but, you caught it early - you will be fine, just stay on it.

pete

[NavyHoldi99]

Hey bdubbs...I did 4 rounds of BEP and did not notice any abnormalities with my lungs. As a fighter pilot in the navy...I breath 100% oxygen during my flights...so I had to get medically cleared before I could fly again and the medical board was obsessed with the potential for bleo toxicity. I did a series of pulmonary function tests before and after chemo and there wasn't any degradation at all. My understanding is long-term bleo toxicity is a very low percentage...less than 10%.

With regards to side effects...the bleo gives you flu-like symptoms (body ache and chills were what I experienced most). My docs gave me benedryl and tylenol to combat that.

As to your dilemma of surv, chemo, or RPLND...I'll leave that to a higher authority!

Hope this helps.

[italian_tc]

Hi! I had a very similar history...
90% ec with invasion + VI, stage 1 at diagnosis

I choose rplnd in order to avoid chemo at all! at the moment everything is going well. I did my check up last week! I'm very happy!!!
they found three micromets in my lynph at rplnd with negative markers, pet and ct. If i did not rplnd i should have chemo for shure. Now I have only a 30% of risk.
Don't go crazy....every choiche is a good choiche...cure rate are exactly the same with surv or rplnd.
After rplnd you will have a bad week but will be very fast! and full of morphine...
good luck!
davide

sorry ...i forgot..i live in italy and here nobody give me a valid reason to have chemo after i/o, is better to wait and use 3 bep only if you need it. In my opinion, at this point, you have to choose only beetween rplnd and surv. With rplnd you have more probabilities to avoid chemo.

[Russell's Mom]

It is important with the Bleo to watch for shortness of breath and/or a dry cough. Russell ended up with the toxicity. There is usually a hypotensive episode, fever and cough. There was a dry cough, but he also produced some sputum. Unlike any I have ever seen (have been a nurse for 30 years). It was white sputum. If you develope any respiratory symtoms, have them check you right away. Anyone who has ever had Bleo should be aware of these symptoms. Although it is rare, it has been known to rear it's ugly head late...years later. Always inform future care givers that you have had Bleo...many care givers are unaware of Bleo...they need to be educated. I am going to put together a Careplan for Russell...past treatments, toxicities concerns etc, then can take to future MDs as needed and it will be there as a guide for Russell.....what risks to watch for in the future etc. an on going document. Hope this helps. Sharon

[Savin16]

Just wanted to add that if it's BEP for you, and your concerned about the effects of the Bleo, the Dr.'s should send you for a Pulmonary function test before you start, during , and after. My brother was suppose to have 4 x's BEP, he had 3, then they noticed a decrease with his Pulm check, then the last round they did EP. Before his last Pulm check, his lungs were back to were they were before. still get a second opinion. Had we done that, my brother would have avoided his 4 rds of chemo, he should have had the RPLND first.

[Karen]

Definately get a second opinion.....preferably from an expert center. Only a doc can look at your entire health history and use those factors to advise you to what may be the best approach for you. http://tcrc.acor.org/experts.html will give you some names. From what our members say, Einhorn seems quite good at responding via e-mail as well.

[Scott]

NS stage I clinical with vascular invasion but clean CT- to wait it out (probably not) vs. 2 BEP vs. the RPLND. My doctors are leaning to the 2 cycles of BEP.

Another welcome, bdubbs78...

Note that 2xBEP for stage IB non-seminoma is listed as "category 2B" in the NCCN guidelines, which means there is "non-uniform consensus (but no major disagreement)" that this is an appropriate treatment option.

What were your tumor markers before surgery, and are they normal now?

Be sure to read up on all of your possible treatment options at the Testicular Cancer Resource Center.

[bdubbs78]

Thanks everyone. A little more info- all my markers are normal except the AFP. It has fallen from 220 pre-orch to 24 as of this past Tuesday, 9/18. If you do the math it is falling at it's half-life of 5-7 days. Next blood draw is 10/2 at which time we hope it will be under 10. As I understand it, if AFP normalizes like the others, then that makes me 1B; if not, 1S. I am in Wilmington, NC, which is at the beach in NC. I met with an oncologist here who didn't really push me either way on RPLND v. 2 BEP. He did pretty much r/o surveillance due to the EC% and VI, which I understand to mean there is about a 50/50 chance of micro-level spread to the lymphs. He seems content to give me the 2 BEP - scheduled to start on 10/8. He doesn't seem too worried about side-effects, but he's probably numb to it all. I have an appointment with a urological surgeon in Charlotte, NC who does RPLNDs, also on 10/2. I have a feeling he will push the RPLND. I truly just don't know which is best. Luckily, my girlfriend is a nurse and she copied my chart today, so I can send it for a second opinion anywhere. Is that how I should do that or do I need my onc to send off for the second opinion? I'm not good at gray area decisions, and I just want to get it right. I appreciate all the comments. This place is cool and you folks are nice.

[RTC]

Oh no . . I have dry cough and a lot of sputum before . .

My Oncologist listen to by lung today but he said he didn't hear
anything unusual . .

I better go ask for some pulmonary function tests

[Russell's Mom]

Ask the oncologist to consult with a Pulmonologist right away!! Oncologists are aware, but you deserve an expert on this one. Have you had a fever? That is another symptom to watch for. Sharon

[jaybird]

Since you are a runner you might want to consider the RPLND over 2xBEP. I personally do not believe in 2xBEP as treatment alone (Dr. Einhorn will probably tell you the same thing). A RPLND will give you pretty strong evidence whether or not you need adjuvant chemo or not. Plus the surgery should not have any real long-term effects on your running (as long as you don’t get the hockey stick incision).

I had the RPLND and they found micro involvement. So I then had 1xBEP and 1xEP. A recent chest scan (7 years later) has shown damage to one of my lungs. The damage is very minor but I do believe that I have lost some lung capacity (I'm a runner as well) and I only had 1 round of Bleo. You can also consider having the RPLND and then if needed 2xEP (minus the bleo) which would allow you to avoid lung problems. This method is well documented in the following study.

http://jco.ascopubs.org/cgi/content/full/22/3/464?ck=nck

[k.strehle]

welcome dubbs

second opinions are the norm. i was late in getting mine but dr. einhorn know the best course. with bleo the lungs are of concern. i had shortness of breath and my last chemo (tip) was march and lungs are greatly improved. just having a problem with cisplatin.

good luck

kendall