I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Chemo starting - what to do now

User
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.

User
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.
Show Most Thanked Posts
User
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.

User
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 

User
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
Debby

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

User
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.
Regards
Karen

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

User
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.
User
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. 

User
Posted 23 Jul 2018 at 18:47
Well done , best wishes for the rest .
Debby
User
Posted 23 Jul 2018 at 21:41
Brilliant news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
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!

User
Posted 27 Jul 2018 at 16:34

Sorry, should say urosepsis not neurosepsis!

User
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!

AC
User
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 

User
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


Peter

User
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. 

User
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
Debby
User
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


Peter

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

User
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


Karen

 
Forum Jump  
©2018 Prostate Cancer UK