My oncologist gave me a paper titled 'the tyranny of positive thinking' about half way through my treatment when I told her I was sick of people telling me to stay positive. I though it was pretty good, but it may not be for everyone - here's a link:
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Sorry to make such a deal of the sperm banking, its just that you only get one shot at it. I had BEP at the same time as another guy who missed the opportunity and he became a bit upset about it. He hadn't had kids though. He had 4 rounds of BEP (he had Stage 3C) and it was sucessful for him too.
If you want an inspiring story about BEP check out Lance Armstrong's, he had something like 10 tumours in his lungs, 2 in his brain and a blood bourne form of testicular cancer and it cured him. He actually had VEP but its pretty much the same - VEP has nastier side effects but doesn't damage the lungs so much.
My son was just over 2 when I went through treatment. He'd also got to see my dad go through chemo and pass away and my wife go through treatment for thyroid cancer prior to then, so we were really worried about him too. We're still really worried about the effects of all that to be honest, but it hasnt' seemed to have had a big impact on him. Going to the hospital is a pretty routine and boring thing for him. At the time of treatment I was advised to modify my activities with him so that I could still play with him when I had no energy or was feeling sick. So instead of doing active things, I spent a lot of time doing indoor things like reading books and doing drawings. I don't think he noticed the difference to be honest.
So with BEP, I'm not sure how much you've been told and I'm not sure if the routine has changed since I had it (it probably has), but here's some tips (I'm assuming its 5 days in hospital, then 2 weeks at home):
- ask for a list of all the drugs he's meant to be receiving and when (e.g. 12 hourly), make sure you get the drugs like clockwork and that none are missed. The nurses are usually really great in oncology wards (it takes a pretty special person to work there), but they can get really busy and sometimes being overdue for a dose of something by half an hour can make all the difference.
- take your own food and try to eat lots of small meals if your feeling sick, also try to drink a lot of fluids (but only in small amoutns). He may also need extra food because he may eat more (see below).
- take lorazepam and ask for some to take home. Lorazepam is a sedative and anti-nausea agent that is part of the BEP routine, although they might offer it as optional. Its fairly mild and it really helps take the edge off things. Ask for it early on the first day. One of the other anti-nausea drugs they give is called Dexamethasone and it can be a very powerful stimulant for some people (like me). It made me feel great and eat like a horse (I put on 20 kilos during 9 weeks of chemo - luckily that was about how much I'd lost when I was sick). He will probably need the lorazepam to balance out the dex and he may need to continue taking it at home for a few days after his last dose of dex to be able to sleep. I couldn't sleep for 3 days after my first round of chemo and I was absolutely wrecked. We all thought it was stress until I spoke to one of the nurses about it and they said 'didn't you take any sleeping tablets home?'.
- he will probably lose his hair during the second round, but if he's got hairy arms you might want to consider shaving them. He'll surely end up having plety of things stuck to his arm with surgical tape and it really gets annoying having to rip it off all the time.
- bleomycin always gave me a fever (which felt like chills) about 4-6 hours after I had it, which would last about about 2 hours. I always needed a good sleep at about that point too. Dont' plan to do too much on the days when he's having bleomycin.
Good luck with everything on tuesday, let us know how it goes. Feel free to send me a personal message if you want.
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When I was 7 I fell off my bmx and broke a front tooth, then spent many hours over the course of a few months in my dad's dentist-mate's chair, having a nerve drilled out and everything fixed up.
It was the mid 80's and he was apparently a very fashionable dentist, and he had what I imagined to be a very fashionable painting of a busy day on Sydney harbour, done in bright pastel colours, suspended above his dentists chair.
My memories of just about everything from that period of my life are gone, but I can remember the fine details of that painting very well.
Unfortunately the oncology ward I spent a lot of time in didn't have fashionable paintings, but I did have a view of a construction site (the new part of the hospital) and I think that much more entertiaing, but not very memorable.
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Hey, I was diagnosed with Stage 2C testicular cancer in Dec 08 and I'm now doing great (I feel the best I've ever been to be honest). Had my 18 month check-up on Monday and everything is going perfectly.
I see your husband is starting chemo on tuesday, what sort of chemo is he getting? I had BEP (3 rounds) which is meant to be the worst one for testicular, but I did pretty well on it. I actually found the anti-nausea drugs affected me more than the chemo, especially at first.
The doctors can be a bit slow to advise you about this, but NOW IS THE TIME TO FREEZE SPERM!!! unless your absolutely sure you dont' want to. You can still do it for the first few days after chemo has started too. If money is an issue, the IVF clinic should be able to waive some of the fees (which for me were about $200 up front as a worst case and then $200 yearly), and they might be able to do it free.
The lead up to chemo is a really bad time. I've spoken to a few guys and we all found that it was hyped up way more than it should have been. I expected to be on the ground vomiting for months, but it was nothing like that. I didn't vomit at all.
I had a lot of tips passed on to me by other people that were on chemo and I'm more than happy to share them. Let me know what his chemo regieme is and I'll pass them on.
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Just to introduce myself, I'm AmandaC's husband and I had testicular cancer about 18 months ago.
Sorry to hear about your son, especially being a 2-timer. Its a rare disease to begin with its extremely rare to get it twice. Having said that I know a guy who had 3 seperate occurances by the age of 30. The third one happened because he was left with half a testicle after the second occurance. The doctors figured it would be good to leave him with some testicular tissue so he wouldn't have to rely on testosterone shots so much... and they were wrong (3rd time round he had a stage 3 non-seminoma too... not good). I've heard they don't consider that option very often anymore.
Anyway, it sounds like your son has had his second orchidectamy and your waiting to see an endo to get his hormones sorted out? the spot on his lung might just be a large lymp node or blood vessel. Testicular cancer, especially seminomas which it sounds like your son had, spread in a very predictable way, from the testicles to lymp nodes in the pelvis and adomen and rarely beyond that. From my understanding, its unheard of for it to jump from the testicles to the lungs or above. A friend of mine actually had a similar situaion (without the cancer though). He had to have a lung scan prior to emigrating from America to Australia and they found a spot on his lung that looked a bit dodgy. It was in a very difficult location (next to big arteries) and it took a very complex and expensive operation for him to have it biopsied. It turned out to be nothing, just a naturally big lymph node apparently... shame that he had to pay $40K american to find that out. Luckily our health system isn't like that.
It must be a tough time for your son waiting for the endo. You'd think that sort of thing would be sorted out fairly quickly, but the hospital system always manages to suprise me. I actually chose to go through the public health system where I live because the private hospital wanted me to wait several months for one of their oncologists to get back from holidays. I thought the public hospital was great in comparison.
However, I had several operations at another public hospital which wsan't so great. Those guys tried to talk me out of getting a prosthesis inserted too, using the excuse that there was a 2 percent chance it could get infected (really). I asked what would happen if it did get infected and they said 'you'd need antibiotics', 'really bad antibiotics' I asked... 'no just regular pescription stuff' !?!. I was 3 months out of chemo at that stage and very healthy, so the risk didn't faze me much. But the fact I had to argue for it did, considering that I was also told they were removing the testicle for 'academic reasons' (my cancer didn't originate in my regular testicles, but the only way to be 100% sure of that was to take a very slightly dodgy looking one out and dissect it). I figured the least they could do for that is give me a prosthesis.
Anyway, sorry for rambling on. What I orignally intended to do was tell you about www.tc-cancer.com which you and/or your son might find very handy. The website has forums with a dedicated group of really supportive people including mums, dads, wives and girlfriends of testicular cancer sufferers. There is a dedicated forum for '2x warriors' and guys that need artificial testosterone. Your son might find not want to open up to anyone on the site, but it might help him just to read other peoples stories and there are people just like him on that site. You might find it handy too, some of the most active people on the site are parents and partners.
Good luck with everything.
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You posted a blog title 'harsh but fair' having a go at other cancer survivors for feeling sorry for themselves... I was just giving my idea of a harsh but fair response to that.
We post a lot of personal information and express a lot of emotions on this site. To me, your post has eroded some of my confidence to continue doing that.
Call me juvinile, exclusive, whatever...
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.