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Ask your questions to our Clinical Nurse Specialist Sue, who has lots of experience...
Hi everyone I was just wondering if anyone here has been through BEP (Bleomycin, Etoposide, Platinol) chemotherapy for Testicular Cancer? My younger brother is just about to start 3 months of it tomorrow at the Memorial Sloan Kettering Hospital in NYC and I'm really worried about the side-effects he might face. In fact i'm worried more about the nightmare of him having to go through chemo than the actual cancer itself. He was diagnosed with Stage Ib Non-Seminoma with Lympho-Vascular Invasion in September 2012 and had an I/O to remove the affected testicle. He then had an open RPLND to remove his abdominal lymph nodes (which were all clear of signs of metastases) and he was placed on active surveillance but to our shock his doctors found a "spot" on his lung 2 weeks ago on the latest chest CT scan (wasn't there last time) so he's now starting BEP chemo tomorrow. Thanks in advance - it's hit me like a freight train and i'm really struggling to cope with this news so this forum is a Godsend.
Hi Dan, I went through BEP (Bleomycon, Etoposide, Cisplatin) just over a year ago. There are generally some temporary side effects, but generally manageable. I was able to look after myself during it (all household chores, shopping, going for a walk) - and so it's not so bad.
Side effects I experienced, all of which stopped a few weeks after the end of treatment:
nausea (easily controlled with the tablets),
susceptibility to nosebleeds if I blew my nose too hard
tinitus, a high pitched ringing in response to loud noises
loss of hair during the 2nd cycle (scalp, chest, pubic - but kept eyebrows) . It grows back baby soft and curly.
change in taste, a metallic taste best overcome with spicy or sharp foods (curry, pineapple)
stinking of the chemo chemicals (Well i could smell it, others said they couldn't smell me)
Ohers on my ward did experience some peripheral neuropathy (numbness of extremeties) but they were typically on longer 5 cycles, and it went away. There are some chances of reduction in lung or kidney function but I didn;t experience that, and haven't spoken to anyone who has. I was lucky enough on my ward to have a chap next to me finishing his 5 cycles - he told me his tips. He was stage IV (or IIIc), it had spread as much as it could in him, and today he's fine.
My biggest tip - chemo is ok, manageable, the way to make it an ordeal is to not to do what the doctors and nurses tell you. Avoid infection at all cost - if that means being a recluse for the low immune week of each cycle (week 2) then so be it. With the immune system low you risk pneumonia, and that could be extremely serious - so no visits from all the family, no kids with or without runny noses (school are perfect for sharing infections). I used to meet friends by going for a walk in the fresh air.
All the best
Hi Greg thank you SO much for posting your experiences and tips. I've forwarded them to my brother and I'm sure he'll find them really useful. Being able to speak to someone like you who's actually been through it and come out the other side is priceless. Not only have you helped my bro but it's really reassued me so much aswell. Thanks again - you are a legend. I wish you a very long and healthy life!
there's a great bunch here - others are far better than I on the emotion and psychological impacts, so if you have any question on those too just ask.
I'm not sure how similar the set-up is in NYC compared to the NHS (who have been brilliant) but here is my blog of my treatment
and my top ten tips
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