2x BEP completed, boyfriend intent on refusing third cycle due to severe side effects

[Danielle18]

Hello,
First off, thank you very much for your previous help with preparing for James's RPLND. The results showed the largest lymph node to be 30mm, 26/50 lymph nodes involved by tumors, and teratoma and embryonic carcinoma. For this reason, the doctor recommended 3x BEP as soon as possible, due to the extensive lymph node involvement and the EC. However, James has not at all been coping well with the chemo. He has had nausea that couldn't be touched by any of the three different drugs prescribed, and that was barely helped by the IV anti-nausea drugs, and for this reason, he thinks that the odds of not relapsing are high enough after only two cycles of chemo that he is about 90% set on refusing the next treatment cycle, and he also thinks he literally would not survive another round. He just finished his last bleo dose yesterday, so this is fairly urgent.

Obviously I'm terrified, but there isn't much I can do if he decides to refuse treatment. I was wondering if anyone here could lend some insight, or give some reassurance that it won't be that bad if he only does two cycles. I'm not sure if I should email Dr. Einhorn to ask him if doing only two cycles is an option for someone with as severe side effects as he had.
Thank you,
Danielle

[jpboucher]

Hey Danielle,

From what I understand, its pathologic staging is pN2, since the largest lymph node is inferior to 5 cm.

The preferred treatment after RPLND with pN2 is BEP x 2 or EP x 2.

How are his tumor markers post-RPLND ?

I would ask Einhorn with his opinion on this case. He usually answer fast.

What drug did he have for nausea ? After BEP x 2, I had enough of nausea, but I took olanzapine and third cycle was the easiest of the three cycles. Recent studies have demonstrated the great efficacy of this drug against highly emetogenic regimen, as BEP. Einhorn participated on some of these trials.

If a third cycle is necessary, we'll need to upgrade his antinausea regiment. Let me know what was used before.

Thanks,

Jean-Philippe

[Danielle18]

His markers, as of two months post RPLND are LDH: 183, AFP: 7.8, B-Hcg: <0.1. For nausea, he tried Compazine first, and couldn't handle the side effects, and the Zofran and Atavan had minimal effect on the nausea even when taken on a rigorous schedule. The doctor and nurse haven't mentioned using olanzapine, thank you so much for suggesting that! I'll email Dr. Einhorn today to see if he has any insight. Thank you for your help!

[jfert]

Danielle,

I'm sorry that you are going through this. I did 4x EP, not BEP, so I can't relate to that. Nausea wasn't the issue for me, but I was crippled by heartburn in much the same way that it seems James is dealing with Nausea. It was so bad, I also seriously considered skipping my last cycle. When I asked about skipping the cycle, Sloan was adamant that I not do it. Adamant! Unless there was medical reason that made it dangerous to receive more chemo (and their wasn't in my case). They said that the survival rates with a missed cycle significantly decrease. I can't speak to how those survival rates would change based on James' specific situation, but based on my experience I caution you to think critically about going against medical advice on this.

I went through with the last cycle. It really sucked, but it was the right move for me and I am 7 months cancer free.

Good luck..

[Danielle18]

Hi jfert, thank you for replying. I'm sorry to hear you had such a hard time with yours. I wish the doc we're getting the chemo through would give him some statistics, I wasn't able to come up with anything concrete for survival differences that wasn't behind a paywall. His doctor is calling him this week, so hopefully she is able to impress the urgency upon him. I really really hope he comes around.

[PNW mom]

You may find this article helpful. Olanzapine is much, much easier to tolerate than Compazine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4093458/

[JeskiM69]

Inquire about Emend (aprepitant).

It worked really well with me.

Yes, it's worth contacting Dr. E. He'll respond quickly.

- Matt

[biwi]

I had Emend and my nausea was pretty well controlled during infusion days. The Sunday-tues after chemo was when I usually felt nausea. The last 2 rounds I threw up a couple times but that was it. It was annoying but not crippling. I had some pills for non-chemo days that I took regularly for a few days after the 3rd and 4th round.

[jpboucher]

Danielle, if more chemo is necessary, I'll suggest :

- Zofran days 1-5
- A corticosteroid (usually dexamethasone) days 1-7
- Emend days 1-7
- Olanzapine starting the day before chemo until day 12 (note : that's my recipe, not the one studied, but I had really severe delayed nausea)

Overall, complete response to nausea was 65 % with this combo compared to 40 % with the standard combo (which is Zofran + corticosteroid + Emend).

Here's the study,

Keep us updated,

Jean-Philippe

[jpboucher]

Here's the link :

http://www.nejm.org/doi/full/10.1056/NEJMoa1515725

Jean-Philippe

[Chemin]

Hi Danielle,
My son had the very same issues as your boyfriend. He was so severely nauseous he could not eat during or after his first cycle of BEP. It was awful and he had no idea how he was going to get through the next 2 rounds. He took all the above medications mentioned following a strict regimen and still could not eat. We never missed a dose. He always tried to hold the vomiting at bay, but he started to lose a tremendous amount of weight due to the severe nausea. I had the oncologist order Marinol. He took 5 mg daily but then lowered to 2.5 mg, and only took this medication during his 5 day weeks of round 2 and 3. Marinol is like synthetic marijuana in pill form. It is very expensive but my insurance covered it. It helped with the nausea and allowed him to at least be able to eat. He was pretty " high" throughout the 2 long weeks of chemo, but he made it through. He actually got a bit of the munchies and I was so happy he had somewhat of an appetite to sustain him. During his off weeks, he did not use the Marinol, but switched back to the other meds for nausea. It might be worth asking your oncologist about it. I think he should finish the 3rd round if that's what the oncologists suggest. Good luck. Sorry you both are going through this.

[Mike]

Having your physician contact Dr. Einhorn (or you contacting him) may not be a bad idea to assess BEPx2 vs. BEPx3. With so many positive nodes I am not sure what they wold recommend.

As far as the nausea and vomiting, Dr. Einhorn did have a publication of what they do at IU but it was published in 2015 and written in 2014 https://www.ncbi.nlm.nih.gov/pmc/art...015-943618.pdf

It looks like they recently published another article in July https://www.ncbi.nlm.nih.gov/pubmed/26838019 and it looks like they may be questioning if using fosaprepitant may not be as effective as using aprepitant. It may be worth getting the information directly from them.

Mike