Chemo starting - what to do now

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.

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 !

Debby

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!

AC

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

Best wishes

Debby

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

Hope it continues to go well. Thanks for update.

Ian

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.

Regards

Merilyn

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.

thanks

John

AC