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User
Posted 13 Dec 2014 at 22:33
My husband Tony has just had his first infusion of Docetaxyl. It's only three months since he was diagnosed with advanced Pca, and the hormone treatment has completely cured the pain (for now), but he was offered an early course of chemo, rather than waiting until the cancer becomes resistant, as this seems to give better outcomes.

He was quite apprehensive about the chemo, but it was all very staightforward, and so far(2 days on) he's absolutely fine. No changes in his taste or appetite, and he's feeling quite energetic with all the steroids. He's been out gardening today, in good spirits. I know it's early days yet, but I just thought I'd post this to reassure anyone who's in a similar position.

No doubt there will be some side effects, but so far so good. I will post occasional updates as we go along.

Marje

User
Posted 14 Dec 2014 at 18:22

Lyn is correct that it is an accumulative effect as treatments progress.

 

It's the Bromelain in pineapple that helps the taste bud cells recover. The ice cubes just slow the blood supply to the taste bud cells. So using frozen pineapple pieces helps in two ways. You will need to take a thermos flask with the frozen pieces in and a box to spit out into when thawed in the mouth. Keep changing them as they thaw in the mouth. And no sandwiches !

Need to start sucking them as infusion starts & continue for quarter of an hour or so after ideally.

Move the frozen pieces around in the mouth or they can make a sore place on the tongue.

 

User
Posted 07 Jan 2015 at 22:45

Good luck, Kev, I hope it goes well for you. Sounds as if you're pretty fit to start with, which is bound to help. Let us know how you get on.
Marje

User
Posted 15 Jan 2015 at 20:15

I think research is sadly lacking as to the importance of the teapot being green, but who knows? I have also found a green storage jar for the green teabags, which certainly helps to avoid confusion with other teas, and gives the whole green-tea ritual a pleasant harmony.
Makes no difference to me, though, I can't stand tea of any colour!
Marje

User
Posted 30 Jan 2015 at 22:06

Tony continues to tolerate the chemo well. The onco says he's "at the extreme end of the spectrum of tolerance"; I suppose this is just luck, but let's hope the luck extends to the benefits gained from the chemo.

He's now had three of the six infusions and recognises the patterns. Day 3 - 5 are when he feels a bit achy and tired, with disturbed sleep patterns, but by today, Day 7, he is more or less normal, perhaps a bit lacking in physical stamina, but still pretty fit. His sense of taste is beginning to alter, with water and oranges tasting odd to him, but other foods (and wine and beer) continue to appeal. He knows he'll feel pretty much OK for the next two weeks now.

We have thought and researched, Rob and Lyn, about diet, and Tony has decided to cut out dairy foods. We have stocked up with soya milk, yoghurt etc and he's considering a calcium supplemental, as both the hormones treatment and the bone mets increase his calcium requirements. We also eat a lot of other good stuff - lots of fruit and veg, nuts etc.

I am still confused about this, because both the dietician in the chemo unit and one of the PCUK nurses recommend continuing with dairy products. I thought high-fat items would be the ones to cut out, but there seems to be some research suggesting the opposite: that a diet with a lot of low-fat dairy produce is more strongly linked with Pca. Have any of you had any authoritative advice froom a dietician along these lines? I'm just curious, as there seems to be such conflicting advice out there. Also, there is more info about preventing Pca than slowing it down when it's already advanced.

Otherwise, there are no major issues and so far Tony has no regrets about opting for early chemo.

Marje

Edited by member 30 Jan 2015 at 22:10  | Reason: Not specified

User
Posted 31 Mar 2015 at 17:19

Just to update this thread: Tony has now had his final chemo infusion (of 6). He has continued to tolerate it very well, with few problems or side effects. His sense of taste is mostly OK, with some distortion of certain fruit tastes, and sometimes meat wasn't as tasty as it should have been, but these were only occasional blips. He gets more tired than usual and lacks physical stamina, but he's been able to keep up most normal activities, even in the week following the chemo. He is more bald than ever, and has to protect his scalp in bright sunshine. (Our cheeky grandson callled him"Mr Potato Head"!) He feels generally pretty well and in good spirits.

His nails are beginning to get lumpy and ridged. I don't think there's much we can do about this, although I gather than in some European countries they are given special gloves with frozel gel in the fingertips to wear during and after the infusion, which is supposed to help. Has anyone come across this?

Re his diet: he insists on staying dairy free, but eats lots of healthy alternatives. I bought the Prostate Care Cookbook from Amazon (for 1p plus p&p, almost new) and are trying out some of the recipes.

His PSA is still falling, from his alarming 4-figure level last September to 3.7 (I think) at the last count.

Having chemo at this stage, soon after diagnosis, is a new and somewhat experimental strategy. Tony's onco is watching with interest, as he is the only one of her patients so far so try this. Hopefully it will buy him a few extra months or more of good-quality life. Summer, here we come!

Marje

Edited by member 31 Mar 2015 at 18:32  | Reason: Not specified

User
Posted 01 Apr 2015 at 18:35

Sorry to hijack your post,Marje, glad you are feeling better ,Kev.  Poster boy!!! Wow.El.

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User
Posted 14 Dec 2014 at 03:59

Has anyone mentioned frozen pineapple cubes to you Marje? Sucking them during infusions seems to help protect taste buds from the worst of the damage.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Dec 2014 at 08:34
Thank you, Lyn, I had read that tip and so I took some frozen pineapple with us. Oddly enough, this has been the only thing that tasted a bit strange to Tony. He went on to eat somme grapes and a cheese sandwich during the infusion, which tasted normal, and has been enjoying normal meals including a home-made curry. Last night he had some more pineapple and it tasted normal to him. Just shows everyone's different, I suppose.

This morning he's a little bit achy after his outdoor exertions yesterday (temperature normal, though) so he's taking it easy today. The miserable weather makes this an easy choice!

User
Posted 14 Dec 2014 at 12:47

Hi Marje,

 

Funnily enough, Neil was really positive about chemo ! He tried pineapple cubes but didnt persist with them but we used a balm on his finger and toenails, a bit like lipsalve but with organic oils in it to prevent the nail beds becoming very dry from the treatment. You moisturise the nails daily. Worth considering to prevent a possible side effect.

Hope the chemo works well for your husband. Best wishes,

Fiona.

User
Posted 14 Dec 2014 at 13:35

Marie, the damage to taste buds is progressive so far too soon for his food to all start tasting of cardboard yet! The pineapple is a long term thing - it helps prevent the permanent metallic taste that some people get later.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Dec 2014 at 14:06
Ah, I see, thanks Lyn. Will eating pineapple generally help, or does it have to be taken specifically during the treatments?
User
Posted 14 Dec 2014 at 14:27

Marie, As Lyn said taste buds take a bit to lose, but for me one consolation was the taste came back fairly quickly after treatment stopped.

One thing I would recommend though is keep a diary detailing symptoms and mood, on a daily basis as a pattern certainly develops and it can help you both predict good days and bad days and reassure you.

Trevor

User
Posted 14 Dec 2014 at 17:38

The research was based on frozen cubes of pineapple as far as I can remember. My father-in-law's nurse told him to suck ice cubes - it is only about sucking during the infusion; I don't think there is any evidence regarding pineapple helping on the days in between chemo but someone else here may be able to confirm.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Dec 2014 at 18:22

Lyn is correct that it is an accumulative effect as treatments progress.

 

It's the Bromelain in pineapple that helps the taste bud cells recover. The ice cubes just slow the blood supply to the taste bud cells. So using frozen pineapple pieces helps in two ways. You will need to take a thermos flask with the frozen pieces in and a box to spit out into when thawed in the mouth. Keep changing them as they thaw in the mouth. And no sandwiches !

Need to start sucking them as infusion starts & continue for quarter of an hour or so after ideally.

Move the frozen pieces around in the mouth or they can make a sore place on the tongue.

 

User
Posted 14 Dec 2014 at 23:19
I wonder if we can keep Robs reply somewhere we Can refer to it. This is the first time I have seen specific information about the frozen pineapple cubes.

Good luck with the chemo, we were expecting to start this month but it's been put off. John was pretty upset as it happens as he was keen to get it done. Funny old world isn't it?

Best wishes

Allison

User
Posted 15 Dec 2014 at 13:38
I know what you mean, Allison, once you've made up your mind and got all psyched up for the treatment, you just want to get on with it, because any delay just means it will be longer before it's over. Do you have a date for John or is it put off indefinitely?
User
Posted 20 Dec 2014 at 22:57

Well, we're now half way through the first treatment cycle and Tony is feeling perfectly well. He had some mild discomforts during the first week, but nothing major. We do realise that the side effects may build up during later cycles, but at least it looks as though we'll be able to enjoy a normal Christmas with the family, as long as we all stay well. We know that this is the point when Tony's immunity is at its lowest, so we'll just keep our heads beneath the parapet for a few days now and try to avoid picking up any infections.
A couple of things we weren't expecting: one is that the hot flushes induced by the decapeptyl injections have almost stopped; another is that Tony has not needed to shave today, for the first time in over 50 years. The first development is welcome, but the second seems to sadden him. Does anyone know whether the hot flushes would have reduced anyway after 3 months on the hormone, or is the chemo (or the steroids) somehow cancelling them out? And is the lack of facial stubble a hormone thing, or part of the expected hair loss due to the docetaxel? Just curious!

User
Posted 21 Dec 2014 at 18:23

"  And is the lack of facial stubble a hormone thing, or part of the expected hair loss due to the docetaxel? Just curious!"

Probably a bit of  both.

Flushes may come & go. Or may be around whilst on treatment - it does vary. Sometimes worse in the first six months or so & then ease a bit.

User
Posted 21 Dec 2014 at 19:17

I've just completed 20 sessions of Docetaxel (2 x 10). The need not to shave started long ago (6+ years) and I never had the hot flushes thing http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif . Best of luck and do read my profile http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-undecided.gif

Nil desperandum

Allister

User
Posted 21 Dec 2014 at 21:57

When on Docetaxal hot flushes only lasted a few mins after injection, but later on in the treatment made me very sleepy straight after injection. One consolation for me, but not my wife, who had to sit there, was I slept through most of the Chemo. Had first 10 shots in 2011 and stopped shaving almost immediately. Only just started to get the occasional whisker on my chin so shave it off once or twice a month. Haven't half saved on razor blades!!

Edited by member 21 Dec 2014 at 21:57  | Reason: Not specified

User
Posted 22 Dec 2014 at 17:55

Hi Marje

 

I haven't been on the site for a while so have only just read your post.   You said you had posted as a source of information for anyone possibly in the same boat.  I would just like to say thank you for posting as my Dad is due to start the Docetaxel chemo at the end of February and I know he is very nervous about it.  So far he has been on Zoladex and Casodex, the latter deemed to not have helped, hence why chemo is the next option.  He has been very well with few side effects and was worried about chemo as he was told that this would make him feeling pretty awful.  I know everyone is different but for me to be able to pass on some very encouraging news to him that this is not necessarily the case will make him feel a lot better.  I hope your husband continues to do well on the chemo and look forward to reading your updates.  Thanks again and hope you both have a lovely Christmas x  Rachel

User
Posted 07 Jan 2015 at 18:16

Tony had his second chemo infusion on Saturday and it's still all going well, with minimal side effects. Today (Day 5) he is feeling a little achy and tired, but he's had no sickness or stomach problems and is still enjoying his food. He kept a record last month, and knows that this will only last a couple more days and then he'll feel fine, although the second week is when he needs to try not to get any infections, wounds etc.
They do seem to be very good at balancing out all the drugs and their effects. He gets a shot of antihistamine and also an anti- emetic via the cannula before the docetaxel, and steroid tablets all the time, all of which combine to make him feel pretty normal. The extra steroids given on the day of the infusion and the previous day do make him a bit red and puffy, and also wakeful and wired-up, but only for a couple of days. And he is losing his hair, but he had so little to start with, it's all a bit of a joke.
He is drinking pomegranate juice and drinking lots of green tea, which may or may not be beneficial, but he likes them and they can't be doing any harm.

User
Posted 07 Jan 2015 at 18:32
Thanks for your posts piglet, I start my first docetaxl on the 13th, last day at work tomorrow and feeling emotional about leaving work for poss 6 months as everyone is going to be nice and it will probably set me off. I am aprehensive about the chemo, I hope that I cope like your husband does. I too have been on pomegranate juice, green tea but also walnuts and cooked tomatoes daily, no idea if the do anything for cancer but I am sure they are generally healthy and make me feel like I am doing something positive. I have just got back from a 10 mile run and I hope I can run through chemo (albeit slower) as it's really key to my state of mind. Thanks again for your posts, I wish your husband well, Kev

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

User
Posted 07 Jan 2015 at 22:45

Good luck, Kev, I hope it goes well for you. Sounds as if you're pretty fit to start with, which is bound to help. Let us know how you get on.
Marje

User
Posted 11 Jan 2015 at 17:34

Hi Piglet

 

Great news to hear that your husband is still coping so well with the chemo.  Funny you say that he didn't have much hair to start with, that's what my mum says about my dad.  Looks like he is due to start his docetaxel at the beginning of March, after having a well earned holiday in February.  Just out of interest, why the pomegranate juice and green tea??  Hope all continues to go so well and good luck to Kev starting your chemo in a couple of days.  I look forward to hearing how you get on with it. xx    PS  10 mile run??? I couldn't even manage 1 - Good for you x

User
Posted 14 Jan 2015 at 20:45

Rachel, the green tea and pomegranate juice are among the many super-foods that are supposed to be help fight prostate cancer. Broccoli, tomatoes and turmeric are also supposed to be good although I did read something that suggested that turmeric might reduce the effects of chemo. The tea also helps Tony keep up his fluids, as he's supposed to drink a couple of litres of liquid a day. He has found that he quite likes it cold as well, and discovered an old green teapot at the back of a cupboard, so he makes a big pot of green tea in a green teapot every morning and drinks it during the day. Can't do any harm, I suppose.

Marje

User
Posted 15 Jan 2015 at 18:39

Marje

 

Thanks for that, I shall pass on this info to my Dad.  See if he likes pomegranate juice and green tea.  Does this mean I might have to buy him a special green teapot for his green tea!!!! 

Rachel

 

User
Posted 15 Jan 2015 at 20:15

I think research is sadly lacking as to the importance of the teapot being green, but who knows? I have also found a green storage jar for the green teabags, which certainly helps to avoid confusion with other teas, and gives the whole green-tea ritual a pleasant harmony.
Makes no difference to me, though, I can't stand tea of any colour!
Marje

User
Posted 16 Jan 2015 at 06:13
Hi piglet, so reassuring to read your posts as I am about a month behind you. Day 3 after chemo and feel ok apart from a tummy issue for a couple of hours yesterday. I have become a green tea fan, organic naturally de caffeinated if you can, plus pomegranate, tomatoes, broccoli and walnuts. The inter web is such a confusing thing with so many suggestions ( I was advised scorpion venom yesterday from a Cuban) and I am sure there is an element of truth to them all but one thing the PCUK Kings x event taught me was that we also have to enjoy the now so I can do the changes I have made ( I have reduced red meat, fried food, dairy, eggs and generally upped a wider range of vegetables) but not at the expense of a few drinks, 2 packets of crisps followed by cauliflower cheese if I fancy it a couple of times a week!

Please keep posting as I am reading with interest, today is a good day, Kev

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

User
Posted 16 Jan 2015 at 09:07

Good to hear that it's all going well, Kev. Tony has had a slight complication this week as he has some symptoms of a chest cough that I'm just getting over, right at the point in his cycle when immunity is lowest. The hospital did blood tests and gave him some pre-emptive antibiotics and other medication. He doesn't really feel ill but his white corpuscles are low, as we'd expect. It's possible that the next infusion, due a week today, may have to be postponed if the next blood tests are not back to normal.
Apart from that he is eating like a horse - he finds he is hungrier than usual, probably because of the steroids. He eats lots of the right things but also too much of the wrong ones too (sweet stuff, cheese, wine, beer...) but as you say, you need to live in the moment and enjoy it. Our hospital dietician advised against cutting back on dairy, as he has bone mets and needs plenty of calcium.

People ask me anxiously how Tony is, imagining that he's languishing on his bed, and they are quite surprised when I tell them he's out scarifying the lawn, or dismantling old wardrobes to take to the tip.

Marje

User
Posted 16 Jan 2015 at 19:02

." Our hospital dietician advised against cutting back on dairy, as he has bone mets and needs plenty of calcium. "

 

Some of us who have gone dairy-free use a calcium/magnesium/boron supplement or just get sufficient from dark leafy green veggies in particular. Thus avoiding the unhelpful stuff in dairy which the dietician may not be aware of regarding prostate cancer.

User
Posted 16 Jan 2015 at 21:01

Alpro soya milk provides plenty of calcium

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jan 2015 at 22:06

Tony continues to tolerate the chemo well. The onco says he's "at the extreme end of the spectrum of tolerance"; I suppose this is just luck, but let's hope the luck extends to the benefits gained from the chemo.

He's now had three of the six infusions and recognises the patterns. Day 3 - 5 are when he feels a bit achy and tired, with disturbed sleep patterns, but by today, Day 7, he is more or less normal, perhaps a bit lacking in physical stamina, but still pretty fit. His sense of taste is beginning to alter, with water and oranges tasting odd to him, but other foods (and wine and beer) continue to appeal. He knows he'll feel pretty much OK for the next two weeks now.

We have thought and researched, Rob and Lyn, about diet, and Tony has decided to cut out dairy foods. We have stocked up with soya milk, yoghurt etc and he's considering a calcium supplemental, as both the hormones treatment and the bone mets increase his calcium requirements. We also eat a lot of other good stuff - lots of fruit and veg, nuts etc.

I am still confused about this, because both the dietician in the chemo unit and one of the PCUK nurses recommend continuing with dairy products. I thought high-fat items would be the ones to cut out, but there seems to be some research suggesting the opposite: that a diet with a lot of low-fat dairy produce is more strongly linked with Pca. Have any of you had any authoritative advice froom a dietician along these lines? I'm just curious, as there seems to be such conflicting advice out there. Also, there is more info about preventing Pca than slowing it down when it's already advanced.

Otherwise, there are no major issues and so far Tony has no regrets about opting for early chemo.

Marje

Edited by member 30 Jan 2015 at 22:10  | Reason: Not specified

User
Posted 30 Jan 2015 at 22:28

Hi

As you say there is lots of conflicting advice...what's good for you one day isn't the next.

Your OH is going through some major treatment. I would be tempted to listen to what the professionals are recommending rather than googling or even following advice on hear over that of the professionals working with him. But that is just my opinion

Take care

Bri

User
Posted 31 Jan 2015 at 04:05

Marie, while I understand why you would want to make dietary changes, I am not sure this is the right time to do so. Those specialists know the best ways of getting patients through chemo and right now, it is important to keep his strength up. Although Stan had a very prostate-healthy diet even before he knew about prostates, while on chemo the hospital encouraged him to eat loads of ice cream, custards, creamy puddings, etc.

Once the chemo is over with, you could buy something like the prostate cook book from Amazon - this acknowledges that most of the research into diet is about avoiding foods that might cause PCa later in life and there is very little research to support the notion that the same applies to men already diagnosed. However, the cook book does identify research about some foods that men with advanced PCa should avoid as well as some foods that appear to slow cancer progression.

Re your comments about high fat - low fat, my understanding of the research is that it is the amount of growth hormones in dairy foods that is the problem rather than fat content.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Mar 2015 at 17:19

Just to update this thread: Tony has now had his final chemo infusion (of 6). He has continued to tolerate it very well, with few problems or side effects. His sense of taste is mostly OK, with some distortion of certain fruit tastes, and sometimes meat wasn't as tasty as it should have been, but these were only occasional blips. He gets more tired than usual and lacks physical stamina, but he's been able to keep up most normal activities, even in the week following the chemo. He is more bald than ever, and has to protect his scalp in bright sunshine. (Our cheeky grandson callled him"Mr Potato Head"!) He feels generally pretty well and in good spirits.

His nails are beginning to get lumpy and ridged. I don't think there's much we can do about this, although I gather than in some European countries they are given special gloves with frozel gel in the fingertips to wear during and after the infusion, which is supposed to help. Has anyone come across this?

Re his diet: he insists on staying dairy free, but eats lots of healthy alternatives. I bought the Prostate Care Cookbook from Amazon (for 1p plus p&p, almost new) and are trying out some of the recipes.

His PSA is still falling, from his alarming 4-figure level last September to 3.7 (I think) at the last count.

Having chemo at this stage, soon after diagnosis, is a new and somewhat experimental strategy. Tony's onco is watching with interest, as he is the only one of her patients so far so try this. Hopefully it will buy him a few extra months or more of good-quality life. Summer, here we come!

Marje

Edited by member 31 Mar 2015 at 18:32  | Reason: Not specified

User
Posted 31 Mar 2015 at 18:25
Marje

Great update everything sounds about as good as it gets. Tony feels good, PSA has dropped into low single digits and you are looking forward to summer.

It is my honest opinion that having chemotherapy this early is key in advanced PCa, hopefully results like your husband has had and those emerging from the stampede and other trials will encourage more oncologists to follow this course of treatment when possible and appropriate.

Best wishes

Xx

Mo

User
Posted 31 Mar 2015 at 18:27

Hi, Good to hear he has tolerated his treatment well.Atb,El .

User
Posted 31 Mar 2015 at 19:46
So delighted to hear this news, as many here have said, early chemo may offer a really good chnace of a decent period of remission.

With kindest regards

Allison

User
Posted 31 Mar 2015 at 20:43
Hi Marje

Great to hear hubby is doing well. Like him I had a wobble with chest infection but seem to be getting over that. I had round 4 last week, my finger nails are fine as I have been putting on hand cream twice daily ( Norwegian hand and nail cream) but I forgot my toe nails and as I have been running loads all my toenails have gone black, something that has never happened before. It's probably too late to do anything about it however I will have a go with the cream. I like your oh have a distorted sense of taste now despite frozen pineapple ( although who knows what it would have been like without) , hair loss but feel ok most of the time, well 95% which is good enough for me.

I run the Brighton marathon in 10 days, can't wait, I also appear to br PCUK poster boy in this months men United publication due to running on chemo.

I say all these things on your thread to 1) thank you for your posts as they were/are a comfort for me as I went on chemo and 2) for others reading this thread to prove that you can still do stuff. My consultant continues to be supportive of what I am doing.

Thanks again, keep posting.

Kev

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

User
Posted 01 Apr 2015 at 13:26

Hi Marje,

I was diagnosed over two years ago with extensive spread, i was started straight away on Chemo and had excellent results, somewhere on my threat are bone scan pictures of pre-chemo and after chemo.

Really hoping hubby gets good results as well

Si x 

Don't deny the diagnosis; try to defy the verdict
User
Posted 01 Apr 2015 at 18:35

Sorry to hijack your post,Marje, glad you are feeling better ,Kev.  Poster boy!!! Wow.El.

 
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