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Practical Advice needed

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User
Posted 01 Nov 2016 at 19:18

My OH David (aka ColU_FC) is a regular on this forum. Up till now the PC has been held in check by medication - Zoladex, Enzalutamide, etc. Sadly that time has passed and we are now into radiotherapy to deal with a PC damaged shoulder blade, followed in a couple of weeks by the start of 7 months of chemo.

 

There's masses of information available on the internet and it's difficult to distill out what is valuable and worth reading. The people on this site have lots of personal experience of what is helpful and what isn't. Can anyone give me some practical advice (or point me in the direction of websites with such advice) as to how best I can help him deal with issues such as minimising the risks of infection, managing side effects, etc.?

 

Many thanks

Linda

User
Posted 02 Nov 2016 at 08:07

Hi Linda

Things i was told / did

Electric razor

Non perfumed shower gels/ shampoo

i used the cold cap didn't loose my hair on my head but lost it everywhere else.

sleeping was all over the place often up at 4am

taste buds went for about 5 days ate loads of ice cream think the cold helped

if you get sickness tell them and get the sickness meds changed, after my first cycle i was very sick changed meds no sickness for the next 8 cycles

any family gatherings that you would rather not go to, tell them you immune system is compromised and stay at home, sometimes i wish i was still on chemo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

a good thermometer

and lots of beer in the fridge for when taste buds are backhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

my wife loved giving the injection for boosting the white blood cells, 

hope it all goes well

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Nov 2016 at 06:58

Hi LInda I cannot give you the answers you are looking hopefully somebody else may have and will reply, all the best Andy

User
Posted 03 Nov 2016 at 07:53
Hi ,we shaved off Garys hair in anticipation of losing it because he works away and didn't want to embarrass the poor chambermaid who had to scoop it up off pillow or plug hole , he chose a no 1 shave and I hated it . By the time Gary came home 2 weeks later it had grown and again we shaved it ! This time it still came back but at a slower pace ,so maybe don't go to drastic until you know which way it's going to go

Best of luck

Debby

User
Posted 03 Nov 2016 at 12:08

One other practical suggestion is to suck frozen pineapple cubes during the chemo session and for 20 mins after... apparently it lessens the amount of chemo that gets to the mouth and that lessens mouth ulcers and taste-bud damage. No idea if it works since we only have our own experience to go by but we're half way through the 6 chemo sessions and no problems so far. Good luck. Eleanor

User
Posted 04 Nov 2016 at 20:32

I 'm sure the cancer unit where he has the treatment will give you both a lot of the advice you need. In particular, they will make sure you know how to spot the signs of a possible bacterial infection, and how to get treated quickly if this is suspected. To reduce the risk of such infections, you can use hand gel and get all your visitors to do likewise. Avoiding crowded indoor public places is a good idea - my husband rashly agreed to attend a children's theatre production to see the grandkids on stage, and then had a raised temperature which meant he had to be rushed to hospital for intravenous antibiotics.

Don't assume the worst - David may not experience many of the side effects of chemo.

Marje

User
Posted 05 Nov 2016 at 12:18
Another bit of advice is to take vitamin D daily, Max dose allowed, my onco said everyone should do this regardless of cancer as it builds the immune system. £10 gets you a years supply!

Since taking this 2 years ago, I have not even had a cold despite chemo and radiotherapy, may not make any difference but for a tenner worth doing me thinks.

Edited by member 05 Nov 2016 at 12:18  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

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User
Posted 02 Nov 2016 at 06:58

Hi LInda I cannot give you the answers you are looking hopefully somebody else may have and will reply, all the best Andy

User
Posted 02 Nov 2016 at 08:07

Hi Linda

Things i was told / did

Electric razor

Non perfumed shower gels/ shampoo

i used the cold cap didn't loose my hair on my head but lost it everywhere else.

sleeping was all over the place often up at 4am

taste buds went for about 5 days ate loads of ice cream think the cold helped

if you get sickness tell them and get the sickness meds changed, after my first cycle i was very sick changed meds no sickness for the next 8 cycles

any family gatherings that you would rather not go to, tell them you immune system is compromised and stay at home, sometimes i wish i was still on chemo http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

a good thermometer

and lots of beer in the fridge for when taste buds are backhttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

my wife loved giving the injection for boosting the white blood cells, 

hope it all goes well

Si 

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Nov 2016 at 09:03

Many thanks Si

This is all very helpful. At the moment David is not planning to use the cold cap. He's going to get his hair cut very short (number 4 clippers all over). I think he may start off looking like Bart Simpson and end up looking like Homer!

Linda

User
Posted 02 Nov 2016 at 12:57

Originally Posted by: Online Community Member

I think he may start off looking like Bart Simpson and end up looking like Homer!

 

Choke; splutter!!

User
Posted 03 Nov 2016 at 07:53
Hi ,we shaved off Garys hair in anticipation of losing it because he works away and didn't want to embarrass the poor chambermaid who had to scoop it up off pillow or plug hole , he chose a no 1 shave and I hated it . By the time Gary came home 2 weeks later it had grown and again we shaved it ! This time it still came back but at a slower pace ,so maybe don't go to drastic until you know which way it's going to go

Best of luck

Debby

User
Posted 03 Nov 2016 at 12:08

One other practical suggestion is to suck frozen pineapple cubes during the chemo session and for 20 mins after... apparently it lessens the amount of chemo that gets to the mouth and that lessens mouth ulcers and taste-bud damage. No idea if it works since we only have our own experience to go by but we're half way through the 6 chemo sessions and no problems so far. Good luck. Eleanor

User
Posted 04 Nov 2016 at 20:32

I 'm sure the cancer unit where he has the treatment will give you both a lot of the advice you need. In particular, they will make sure you know how to spot the signs of a possible bacterial infection, and how to get treated quickly if this is suspected. To reduce the risk of such infections, you can use hand gel and get all your visitors to do likewise. Avoiding crowded indoor public places is a good idea - my husband rashly agreed to attend a children's theatre production to see the grandkids on stage, and then had a raised temperature which meant he had to be rushed to hospital for intravenous antibiotics.

Don't assume the worst - David may not experience many of the side effects of chemo.

Marje

User
Posted 05 Nov 2016 at 09:01

Many thanks Marje

 

I'll be going along to the pre-chemo session with notebook and pen. 

 

We don't have children, hence no grandchildren either, so don't have the need to spend time in the company of small people. We plan to avoid as far as possible going to public places during the riskiest time of the cycle. David would like to be able to continue with the gym when he feels able, with careful use of the wipes and sprays that are available. During risky periods, weather permitting, we'll do some gentle walking instead. We hope he'll be able to play croquet if the shoulder improves - we do play through the winter down here in Devon. He did try playing holding the mallet with just one arm the other day and didn't do too badly, but it's not quite the same.

However, the sporting handshakes at the end of games will have to be replaced by just a thank-you.

As for the side effects, we're hoping for the best but planning for the worst. Fingers crossed.

Linda 

User
Posted 05 Nov 2016 at 12:18
Another bit of advice is to take vitamin D daily, Max dose allowed, my onco said everyone should do this regardless of cancer as it builds the immune system. £10 gets you a years supply!

Since taking this 2 years ago, I have not even had a cold despite chemo and radiotherapy, may not make any difference but for a tenner worth doing me thinks.

Edited by member 05 Nov 2016 at 12:18  | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

 
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