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Chemo starting - what to do now

Posted 05 Jul 2018 at 15:31

Hello everyone, I’m new to the site having come across it today after looking for answers to numerous questions.  My husband was diagnosed with advanced prostate cancer in April. He was on hormone tablets for four weeks and is now part of the stampede trial using hormone patches. His chemo starts in two weeks and I just don’t know what to expect or do for him at home once that starts.  we have been given all the literature about what may happen but there’s nothing like hearing from someone who has been through it. Is someone out there who can help/advise please.Thanks Alys .

PS we have a dog who is his shadow and cuddles up to him at every opportunity, I’ve read this may be a no no once chemo starts.

Posted 05 Jul 2018 at 23:04

Hi Merilyn,

I had a course of 6 cycles of palliative chemotherapy between November and February this year. I understand however, that my dose level was a little lower than normal because my onco felt I would have trouble coping with it.

But on the whole, I think I did cope with it very well. I had the usual range of side effects (a bit of sickness, nausea, diarrhea and so on), but not all at once.  I did end up in hospital with suspected sepsis twice during the first cycle, but this was mainly due to overcaution on my part.

By far, the biggest difficulty I had was the extreme tiredness, which was very debilitating for about two out of the three weeks of each cycle. I think that is the biggest thing you need to prepare for. Your husband will be able to judge his own capabilities during this period. I know my wife kept trying to encourage me to get out and about during this period, but I knew when I was ready to do that. I couldn't respond to her encouragement when I didn't feel ready and that made me feel guilty!

I'm not sure about the dog, but I think your husband needs to try to live as normally as possible and if the dog is part of his normal life, I would expect that the cuddles would be allowed, but check this with your onco or specialist nurse.

I hope this helps, but I am sure you will get more replies quite soon.

Posted 06 Jul 2018 at 07:33

You should be able to talk to a nurse at the hospital where your husband is about to undergo treatment.

other than that the McMillan centre at your hospital should run a workshop about what to expect during chemotherapy.

i found both of theses really useful.

my husband has now completed his sixth treatment albeit the fifth and sixth was reduced by 60% because of numbness and tingling in his fingers and toes.

he is very tired but well and coping

hope everything goes smoothly 

Posted 06 Jul 2018 at 08:19

Hi Merilyn , my OH was diagnosed Dec 15 and like yours had early chemo which had at the time only just been introduced after trials to be given early on in diagnosis rather than at a later stage when the body may be stronger to cope . Gary had very little problems,continuing to work throughout ,even going in on the morning before his treatment ! Gary said it kept his mind occupied.Not everyone is that fortunate and must listen to their own body for any side effects ,Gary’s main side effect was fatigue in the later sessions .
He had mouth wash to help with the metallic taste and co codamol for pain that seemed to come on about 3/4 days after session that would last a couple of days .As for hair loss it was minimal on head (only thinning) but most of his body hair fell out and he still has little body hair now .
The results have been good ,he’s on hormone injections and stampede trial arm j ,the PSA has remained at 0.01 undetectable for 2 years .the good thing about being on the trial is the extra monitoring and it would be good if you could report the effects of the patches as there’s an awful lot of men that would welcome if any of the side effects could be lessened on these .
Good luck and ask away if you need anything your unsure of ,lots of knowledgeable people on here.
Best wishes

Edited by member 06 Jul 2018 at 08:24  | Reason: spelling !

Posted 07 Jul 2018 at 12:44

Hi Merilyn
My husband was diagnosed in march. He started in HT straight away and has had early chemo. He's completed 2 cycles of docetaxel, side effects after first were bone pain in legs, mouth ulcers and tiredness. After second session the bone pain wasn't as bad neither were the mouth ulcers but the tiredness was worse, and started to lose his hair although this has stopped at moment. This said he has managed to keep working (reduces hours 75%) and taking our dog for a walk everyday. He had his third session on Wednesday.
Hope this helps.

Edited by member 07 Jul 2018 at 13:39  | Reason: Not specified

Posted 07 Jul 2018 at 17:49
Thank you all for your help and advice. My OH starts his chemo In 10 days and thanks to your replies I know what to expect now. He’s starting week three on the trial patches. Will keep you informed on how it goes.
Posted 23 Jul 2018 at 18:28

My husband had his first stampede trial check up today. After initial problems and serious thoughts of stopping the trial, he decided to carry on and today the results have shown they are working well. His PSA is now down to 2.53 after only four weeks. His ’patches’ have now been reduced to 3 twice weekly. His first round of Docetaxel was last week and he fared quite well with only a couple of days feeling a bit rough, which was expected. Needless to say we are both really happy with the results so far. 

Posted 23 Jul 2018 at 18:47
Well done , best wishes for the rest .


Posted 23 Jul 2018 at 21:41
Brilliant news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 27 Jul 2018 at 15:34

Unfortunately had to rush my husband to hospital last night. Had been feeling unwell and flu like all day, then started shivering quite excessively. His temperature was up to 38.9. The hospital were brilliant. No hesitation at all in treatment. He was hooked up to iv antibiotics, ECG, numerous blood and urine tests. This morning the news came that he had neuro sepsis bit his temperature was on the way down. His white cell blood count had gone down to a dangerous level. The probable cause was the chemo so his next round will be reduced. Luckily he’s much better today. Bit of a shock though!

Posted 27 Jul 2018 at 16:34

Sorry, should say urosepsis not neurosepsis!

Posted 27 Jul 2018 at 16:35
Marilyn, you've both dealt well with the crisis! The learning point, probably spelled out on a little red card your husband was given in the chemo centre, is don't delay when faced with fever-like symptoms, high temperature etc. Every hour delayed. puts the patient more at risk! I write from bitter experience of trying (and failing) to tough it out!


Posted 27 Jul 2018 at 16:36

Well done for being pro active, I know that my husband was unwell the first couple of treatments and was constantly monitoring his temperature. He got fed up with it so I resorted to a forehead thermometer just point and record! 

The hospital is brilliant whenev I was worried I would ring then they reassured me but luckily he did not have to be admitted.

he suffered from oral thrush and slight neuropathy and had his dose reduced but now he’s on a three week break Because of the neuropathy and will be tested in two weeks time to see if his PSA has dropped 

Posted 27 Jul 2018 at 23:28

Hi Merilyn,

You did absolutely the right thing by going to hospital with a raised temperature and it has proved to be fully justified with that diagnosis. That is a lesson for all of us.

As I said earlier in your thread, I ended up in A&E twice during my first chemo cycle. The first time was because we were being overcautious, with only a slightly raised temperature ( I think it was just touching 38), but the second time, about 3 days later my temperature was 39.

On both occasions, the A&E treated me immediately for sepsis, with antibiotic drip and lots of blood tests. On the second occasion, my neutrapena count was very low (or was it high, I can't remember now? It was a long way off what it should have been anyway). But I didn't actually have sepsis. They let me go home the next day, but I had to go back every day for 3 days for tests, by which time the neutropenia had started to normalise.

However, I had 5 more cycles of Docetaxel after that, without any repeat of the high temperature, so don't worry too much that it may happen again.

I understand the feeling of shock you had, but all's well that ends well. I am glad he is feeling better today and long may that continue.

Best wishes to you both


Posted 02 Aug 2018 at 08:51

Thanks to you all for your nice replies. Everything ticking along nicely now and he’s feeling much better. His hair is starting to fall out so he’s been to the barbers and got a grade one all over! Next round of chemo is Tuesday. His ‘trial’ patches are not affecting his skin so much now and we’ve found something to stick over the whole area which is waterproof and breathable so when he showers they don’t slip off. The nurse in the hospital gave him a couple of covers so we did more research from that.  Will post on how well that goes as it may help someone else who suffers from the same experience. Apparently it will cover dressings as well. 

Posted 02 Aug 2018 at 19:08
Glad alls going well ,Gary also shaved his head in anticipation of losing his hair but it grew back !! His only thinned out on head but lost mainly body hair .

Best wishes


Posted 02 Aug 2018 at 22:48

The hair will grow back. I now have a full head of very thick hair. The only downside was it grew back pure white!

Glad things are working out better for you now.

Best wishes


Edited by member 02 Aug 2018 at 22:49  | Reason: Spelling mistake

Posted 03 Aug 2018 at 09:57

Glad all is going well. OH started to lose his hair (thinning) after 1st chemo but nothing since. He's now had 4 cycles and apart from a few days (5-8) where he has bone pain and mouth ulcers hes been fine, and actually not had a day off work. We feel extremely lucky. His psa has remained at 0.2 and consultant send try pleased as are we.


Hope things continue going well for you


Posted 02 Sep 2018 at 10:02

Update on Rob who completed his third chemo this week. After a reaction to it the second time they flushed his system and also pushed through antihistamine before transfusing the docetaxol very slowly. He now has to have injections every day for five days, commencing the third day after each chemo. Apparently it’s to stimulate the bone marrow into producing white blood cells as his have been dangerously low. The hair loss on his head seems to have stopped and is now growing back albeit very fine.

Good news on PSA score, down to 1.33.

We noticed his hand looked a bit odd last night where they insert the cannula for the chemo. It’s brownish red colour apart from where the needle was inserted where it is white and the size of a 10p. No pain, swelling or temperature. Anyone else experienced this? 

On the whole no other side effects. He always feels a ‘bit rubbish‘ on days 3-7 after chemo.

His Stampede trial patches are staying on now. After research we were able to buy a dressing fixation to stick over them which is breathable and waterproof so they don’t slip around in the shower. If anyone is experiencing the same problem I’ll provide the name and where we bought it.

So alls looking pretty positive, fingers crossed! 

Thanks to everyone for being my sounding board.




Posted 02 Sep 2018 at 17:07

Hope it continues to go well. Thanks for update.



Posted 06 Oct 2018 at 08:23

Hi Merilyn, just wondered how Rob is progressing? I'm on my first course of docetaxel (1/10/18) and wondered how long after the cycle you stop walking round like a zombie?
Got a bit of garden tidying to do later, just need to muster some enthusiasm for it.

Edited by member 06 Oct 2018 at 08:24  | Reason: new

Posted 07 Oct 2018 at 10:07

Hi Jasper, hope your first round of chemo went well.

Rob started feeling ‘a bit rough’ from day 3 after chemo although it wasn’t nausea, but headaches, giddiness etc. Initially it lasted for 3 or so days but as the sessions increased these days extended somewhat. Progressively his taste deteriorated but the nearer he got to the next session it started to return a little. Third round was pretty yuck for him but we realised he wasn’t drinking enough so increased the fluid uptake quite considerably which helped no end so I recommend you drink 4 or more pints of water/squashes per day as well as the normal cups of teas/coffees. Don’t drink the water straight down though, drink it gradually over 15-30 minutes. This helped considerably. The sooner you start after chemo the better.

His fatigue level is pretty high, and has built up as the sessions have increased. He does little jobs around the house but doesn’t have much energy to keep the momentum going for any length of time. He does experience giddiness when getting up quickly. So if you are affected in the same way I recommend you bend over slightly after you get out of the chair, don’t just rush off after getting up!  The week before his next round of chemo is generally pretty good.

 I hope this has answered your question but if there is anything else I can help with please don’t hesitate to ask. Bear in mind one man’s experiences may be different to another’s but you will find lots of help and advice on this forum.



Posted 07 Oct 2018 at 10:17

Regards to gardening Jasper, he now manages to mow our fairly large lawn week 3 after chemo. After the first round of chemo he was quite active though, it’s only as the sessions have progressed his fatigue levels have got higher. If you had your chemo on 1st, from a Robs experience he was starting to feel ok from about day 7 so maybe you won’t be walking around like a zombie much longer! Regards M.

Posted 31 Dec 2018 at 14:16
Hi All

Just checking my meds in advance of my final docataxel chemo session on 14/1/19.

I've been taking Lansoprazole 30mg a day half an hour before food for 3 months. These were prescribed by my Onco since the chemo started on 1/10 but I'm going to run out on 19/1 and I'm wondering if he prescribed up to that date deliberately or do i need another couple of weeks on these to help me to the end of the 3 week chemo cycle?

I'm not due to see him again until February so if anyone could advise I'd be grateful.

We did discuss weaning me off prednisolone at my last meeting but the Lansoprazole wasn't mentioned.



Posted 31 Dec 2018 at 16:06
Hi John

My other half stayed on all his meds until final chemo on 31/10. He was then weaned off the prednisolone over two weeks but all other meds just stopped and he returned all unused to the hospital for disposal. May be worth a quick phone call to your Doc to clarify things though.

As an aside it is now approx 8 weeks since chemo stopped and he has been suffering aches and pains and fatigue. Apparently this is quite normal - just a heads up - Forewarned is forearmed!

Chin up, happy new year, fingers crossed for a better one.


Posted 31 Dec 2018 at 16:30
Hi John. This is a bit of a puzzle. Lansoprazole is not usually prescribed with docetaxel treatment, which of itself does not normally cause excess stomach acidity. Perhaps you reported excess acid to your oncologist? Incidentally, I am on the same dosage, but prescribed for a hiatus hernia. I never had it during my chemo not did I feel the need. It can be taken in the morning, or as I do, half an hour or an hour before my evening meal. It seems to suit me better, after some experimentation with split doses and different times, after a chat with my GP.


Posted 31 Dec 2018 at 20:35

Very odd indeed, I made no special requests when I started the docataxel. My Onco prescribed lansoprazole to reduce stomach acid, metoclopramide to relieve nausea and prednisolone as a steroid. didn't challenge him, I was newly diagnosed so just went along with his advice.

i quickly ditched the metoclopramide as I've had no nausea symptoms on chemo. I'll probably stick with the lanso till it runs out and wean myself off the prednisolone as per my Onco's instructions. The aches, pains and fatigue is a good heads up Merilyn, thanks for that advice.

Happy New Year all.


Edited by member 31 Dec 2018 at 20:35  | Reason: Not specified

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