Please help...

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Hi all,
I am a mother and a wife, and my husband has just been diagnosed with stage 11b testicular cancer.
With in one week, he has had his testicle removed and now starts chemotherapy on tuesday.
I am kind of unsure what to expect and very confused on how to feel
I know i must be supportive and positive, i am having troubles doing this though.
Please help

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emmag (not verified)
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Re: Please help...

Hi Jnz1,

I'm sure you'll find there are people here who have been through similar experiences and can give you advice and support. In the meantime, ff you need to please call the Cancer Council Helpline on 13 11 20 as we have trained counsellors there to assist you with any concerns or questions as well.

Best regards

Emmag

bernjude (not verified)
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Re: Please help...

Hi jnz1

I know exactly how you are feeling, my husband was first diagnosed with cancer September 09. And now we are going through it all again now, but unfortunately this time the news is worse.
When I first found out last year it shattered me, for about a month I felt so lost and confused, even though I had plenty of support around me.You know the only thing that will help is time, you will get used to the fact that your hubby has cancer because your life will be so different now.
Everything revolves around it, you have to fit your life around cancer as you are so busy with appoinments, chemo is time consuming as there normally is alot of waiting time as the oncology units are so busy. And for us alot of driving, as our unit is 40 mins away.
Just take it one day at a time, each day your head will clear a lttle bit more. And just being there for your husband is support, you need support too, do you have family close by?

Sailor
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Re: Please help...

Hi Jnz1

It is a real shock to have a diagnosis, but you can take comfort in the knowledge that testicular cancer generally has a really good outcome. It has one of the highest percent survivals of any cancer. I have in front of me the data for Cancer Survival Victoria from the Cancer Council and the data shows a 5 year survival of 99% and a 15 year survival of 93%. The clinicians comment covering the data is: “The excellent survival for testis cancer is a reflection of the marked sensitivity of this cancer to treatment including surgery, radiation and chemotherapy. The improvement in survival since the 1980s is likely to be due to several factors, particularly the identification of highly effective chemotherapy in the late 1970s and early 1980s, and increased awareness of the condition resulting in diagnosis and treatment at an earlier stage.”

I have just spent today at a session in at the Cancer Council facilitated by a person who had testicular cancer 12 years ago and he is in fine form.

That being the case, it does not say that this isn't a shock and that the journey ahead is going to be easy. Your husband will need a lot of support, over the next few weeks, but the outcome should be good. It is definitely worth contacting the Cancer Helpline 13 11 20, and also see if they have a Cancer Connect Volunteer who has been through this journey, someone your husband can talk with.

Take care.

Sailor

As we sail thru life, don't avoid rough waters, sail on because calm waters won't make a skillful sailor. Anonymous

stevec
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Re: Please help...

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.

Steve

jnz1 (not verified)
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Re: Please help...

Hi steve, your post is definately encouroging...
He is having BEP also, but 4 rounds, on the 5 days on and 2 weeks off.
We have been told that he could get sick and that he could be back at work the same day, just an individual experience.
His testicular cancer has spread but only to the lymph nodes he is in stage 2b.
We have a child and have spoken at length about the possobilities of more but after 2 miscarriages we are more than content to have just the one.
Sperm banking is really the last thing on our mind, its more the fact of how our three year old will handle seeing daddy sick if that is the outcome of chemo..
I would be so interested in your experience if you happy to share it with us..
Thanks so much
Nikki

stevec
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Re: Please help...

Hey Nikki,

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.

Steve

harker
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Re: Please help...

I'm not familiar with testicular cancer, but I can endorse what SteveC is saying about reactions to chemo and the impact of dexamethasone.

I also did not experience the stereotypical (perception rahter than reality) responses to chemo. I had the perception of great illness, vomiting, wierdness, etc. but I did not experience that. However, I was amazed by the fatigue. That had not been very clear to me but it was the major factor over eight months. It makes itself pretty clear as the blood levels drop, so your husband will want to select what to put energy into. I was in a ward next to a gut who came in for a chemo cycle and then went back out to work. It was amazing. I thought I was a wimp (as Aussie blokes tend to do) until it became clear that there's no right/better/standard response.

And dex is a steroid that's part of the chemo mix in a lot of treatments. I ate a lot, like SteveC, but I also became pretty concerned by the impact it had on my moods, behaviour, level of agression. It does need monitoring, I'd say. It has a reputation for mood impact and you might wat to maintain an awareness of that. I was able to adjust my dose after I talked to my oncologist about it.

So jnz1, I'm glad you are getting this feedback. It's not really you asking for help, you know, there's lots of insight in what you said first off that has helped all of us. I'm happy responsding because of that.

Entirely selfish!

H

PS. The 'gut' is a typo, should have been 'guy', but when I think about it I'm happy to leave it in. Know what I mean?

samex
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Re: Please help...

Hi there,

Cannot agree more about the dex. We all have had different cancers
( mine was bowel) but this seems to common. I was wondering when I was going to be the wasted away chemo patient. Lost 7 kilos after surgery and put on 10 on chemo!! Still trying to lose it 18 months later.

The nausea was bearable but the fatigue really got me down. I am a teacher and I tried to work for a while but it was impossible. By round 9 of 12 i could hardly do the shopping and then bring it inside in one go. I found "nanna naps" almost mandatory. This is maybe where you could help if this is what's needed - giving him some quiet time in the afternoon may help.

I feel that the mere fact that you are asking for advice here indicates that you will be very supportive and an enormous help. Although very cliched, it is really one day at a time.

Take care, Samex

larn75
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Re: Please help...

Hi Everyone,
Ahhhh Dex of the big red head as we refer to it in our house. Sorry but my husband is king of humour deals with everything!!!
My husband also had a lot of fatigue. He has just finished 12 out of 12 scheduled treatmeants. Nausea was never much of a problem, but I always tried to schedule a coffee date with friends on disconnect day (which was day 3 for us) so he never felt embarrassed about taking a little kip in the arvo. by the time I had picked up the kids from school and stopped for a phantom supermarket visit, he was refreshed and ready to face the girls. for some reason he felt embarassed about feeling tired. Thursday was day 4 and worse again but I would spend the day with all the paperwork so he could nap at will.
I bought him a model helicopter to build also so he could have some down time with a reason. My youngest would help him with that so it was also a good excuse for them to spend time together without being to active.
Isnt the section on here for family of people affected by cancer a wonderful support? It is the first place I have found for us to talk with others in the same predicament besides the oncology clinic and they are often to shell shocked or putting on the face to share much. And being able to hear from others who have had or have cancer themselves really really helped me to understand what my hubby was going through.
Keep reading Nikki as there is always something to help.
Alana

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