Chemo has started!

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 16:19

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 17:32 | Reason: Not specified

User

Posted 01 Apr 2015 at 17:35

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.

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

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