1xBEP long term side effects

[MilanD]

I would like to know what are long term complications of 1xBEP. I hear of neuropathy, lung problems, cardio-vascular diseases, diabetes, leukemia and other Secondary Malinoma. I would like to know how much 1 cycle of BEP increase risk for those... What is chance of getting those complications 1xBEP vs no chemo, just surveillance.

[RJKD]

Nobody knows the answer to these questions. There was a large study done by SWENOTECA group. I noticed here was one patient (out of approx 500) who got leukemia.

I suspect that the lung problems and neuropathy are minimal. Those would be the least of my concerns with regards to 1 x BEP. My main concerns were cardiovascular and secondary malignancy. Of course if you do surveillance and then relapse, 3 x BEP would increase those risks more than 1 x BEP would. We don't know the difference in risk between 1 cycle vs 3 cycles. That's why I've become quite pro-RPLND.

[MilanD]

In your situation would you do RPLND if you could decide again? In that study SWENOTECA they recommend 1xBEP for stage 1B and pointed out low risks. At least Cardio Vascular disease you can affect by lifestyle (specially when young). Secondary Malignancies you can't. That's what freaks me out.

[RJKD]

In your situation would you do RPLND if you could decide again? In that study SWENOTECA they recommend 1xBEP for stage 1B and pointed out low risks. At least Cardio Vascular disease you can affect by lifestyle (specially when young). Secondary Malignancies you can't. That's what freaks me out.

Yes I would choose RPLND if I had to choose again. Surveillance was my last choice.

[RJKD]

Notice that nowhere in the SWENOTECA study did they comment on the risk of leukemia. There was a patient that got leukemia and it was not commented on. It’s easy to recommend things but they should have a thorough discussion of the cons of the treatment.

[MilanD]

I believe they can say now what are long term side effects of 3xBEP but not 1xBEP since they start doing that around 2010 and later on. They said in that study that toxicity is minimal and safe with 1xBEP. Since this cancer is rare study are based on small amount of patients and on top of that there is always chance of cancer even without teraphy so having secondary cancer chance after 1xBEP 0.2% (1 out of 500) is almost same as general population. Again unfortunately we will see long term side effects as we are aging. Do you still currently have some side effects?

[RJKD]

I believe they can say now what are long term side effects of 3xBEP but not 1xBEP since they start doing that around 2010 and later on. They said in that study that toxicity is minimal and safe with 1xBEP. Since this cancer is rare study are based on small amount of patients and on top of that there is always chance of cancer even without teraphy so having secondary cancer chance after 1xBEP 0.2% (1 out of 500) is almost same as general population. Again unfortunately we will see long term side effects as we are aging. Do you still currently have some side effects?

1 in 500 is not the same as the general population at all. For the general population, it's much lower than that.

I have Raynaud's in my hands. My hair is not as dense as it once was. Those are the noticeable effects I have.

Also, SWENOTECA's recommendations are for the their patient population. This means patients in the community. If you are close to an academic center like Indiana or MSKCC, who have the best RPLND surgeons, then there is a strong argument for RPLND in such cases. Those are special cases as not everyone has access to these centers, but keep that in mind when making a choice.

[mike123]

​I had 100% pure EC, Stage IB.

I also requested double checking of the pathology - which they did - same result.

I opted for 1xBEP - for me it was a no brainer given the math. Chemo sucks frankly, but EC responds well to it. 50/50 odds with surveillance was just too scary and I have seen a lot of people on here who went surveillance only to have it recur. RPLND is technically also an option but worse odds and I didn't want more surgery.

1xBEP is easier than the 3 more rounds you would need to endure if you lose the surveillance coin flip. And if you are concerned about the experience and long term effects of chemo, one round is the way to go.

I had side effects during the treatment (some nausea, felt terrible, hair loss, hot/cold sensitivity in fingers, low grade fever for a day after second bleo) and a bit after. But hair has grown back. No other side effects so far.

[mcintoda]

1 in 500 is not the same as the general population at all. For the general population, it's much lower than that.

I have Raynaud's in my hands. My hair is not as dense as it once was. Those are the noticeable effects I have.

Also, SWENOTECA's recommendations are for the their patient population. This means patients in the community. If you are close to an academic center like Indiana or MSKCC, who have the best RPLND surgeons, then there is a strong argument for RPLND in such cases. Those are special cases as not everyone has access to these centers, but keep that in mind when making a choice.

RJKD,
What is your understanding of residual relapse risk after RPLND as adjuvant treatment for high risk stage 1?

[RJKD]

RJKD,
What is your understanding of residual relapse risk after RPLND as adjuvant treatment for high risk stage 1?

It depends entirely on what is found in the lymph nodes. If none of the lymph nodes are positive, then 5-10% relapse risk. If even one lymph node is affected, recurrence rate increases to at least 20%. The recurrence rates are higher depending on the size and number of lymph nodes affected.

[MilanD]

How much time do I have to decide on treatment after orchiectomy/CT scan? I heard 6-8 weeks, is it correct? Even with pure EC? How soon one need restaging?

[melanie]

My husband was faced with the same choices in February and I spent a ton of time trying to find answers to the long term risks of 1XBEP and unfortunately there just aren't any many. I think RJKD has given you all the info there currently is on the topic. It does stand to reason that less exposure will mean less risks and with such a high relapse rate my husband felt there were no other options other than adjuvant BEP

I will tell you that in when I emailed Dr. Einhorn asking him about the long term risks of 1 BEP he brushed it off as a non issue. He said it wasn't anything to worry about and most men, even receiving 3BEP go on to live lives with minimal complications. We found that to be the most comforting information received on the matter.

As far as the RPLND goes as a primary treatment option, I remain a bit confused on that. Both the urologist and oncologist did not recommend it, yet I know other still have it presented as a viable first line of defense. The urologist was surprising as surgeons usually recommend surgery, but he said "if it was me I would do the chemo" The reasons given to us for not recommending were - EC that can skip the nodes therefore it would be less effective, it was too major a surgery for a smaller gain, easy to miss something small, and that it was "falling out of favor for many reasons"....not sure what that last statement means in detail, but that was what was said.

The timeline is a 6-8 weeks but if you choose to have active treatment over surveillance than the sooner you get it the better, especially with EC.

Wishing you all the best!