What to expect?

Hi Zoey

There are people here with more experience who will be able to answer, but a few words from me to start it.

My husband (62) is on what they call triplet therapy and docetaxel is part of it. We're halfway through and from what I can say the side effects are not as bad as we were expecting (being warned by the oncologist!). Yes, he gets tired more easily, but he still works full-time. Hot flushes and brain fog probably are caused more by Zoladex (HT). He's never nauseous after chemo, but every food has a metallic flavour for a few hours. And he needs to take antihistamine tablets having symptoms of hay fever. Quite common we were told. Obviously everyone can react differently to the medication, but not everyone gets it as bad as they warn. I understand why the doctors are talking about the "worse case scenario" - it's better to be prepared and then have a "nice" surprise.

My husband says the worst bit is nivestim injections, which he starts 3 days after chemo, for 5 days. They are supposed to make bone marrow work harder but the pain in the bones gets worse with every treatment. Plus sleepless nights. So before the next treatment, I plan to ask for stronger painkillers (paracetamol doesn't do the trick any more) and some sleeping pills if possible.

Your father (as you said in your profile) seems to be fit and well otherwise, so hopefully he will be able to deal with it relatively well. So just be prepared, but hope for the better option.

x

Iska

Hi Zoey88 .

My husband had chemotherapy last year. He was dreading it but once it had all finished he said it wasn't as bad as he had expected. On a practical side, tell dad to take something with him to do as the session can take up to about 3 hours. I also packed a goody bag with a snack and drink as this helps with potential nausea - but hubby didn't have a problem with that. He will probably be given steroids to take before, during and after each cycle to help mitigate any side effects but it is important to let the team know of anything that he experiences during the whole of his treatment as there is usually something to help. We found it helpful to keep a diary of how he felt and discovered that the side effects followed the same path for each cycle. In his case days 2-5 he felt very tired with bone and muscle aches. Days 6-8 things improved and from day 9 he was back to doing his normal pottering (he was 79). Taste was something we had to work round as he found he could not cope with things like tea but it was a matter of finding out what suited him by trial and error. It is important to keep the protein level up as this helps repair the good cells which are also killed off by the chemotherapy and found the easiest way was to eat little and often even if he didn't feel like it. He started losing ALL of his body hair about 2 weeks after the first cycle. If dad is worried about this then he can ask for a 'cold cap' which will reduce head hair loss. As a precaution hubby had his hair cut short prior to treatment and we found that putting a towel over the pillow at night made it easier to deal with the shedding which was very quick. The medical team keep a very close eye on how the treatment is going and will make adjustments to dosing if necessary to make sure that quality of life is maintained. It is not a good idea to drive after each session as the IV has alcohol in it and it can lead to being over the legal limit -on 2 occasions hubby was taken home in an inebriated state and it became a joke that he preferred his whiskey in a glass. Dad will have a blood test before each cycle to check that he is well enough to have it but if his red or white bloods drop too far then they may delay the next session until they have recovered or he will be given a course of injections to get them back into balance. All of the side effects, with the exception of fatigue, had disappeared about a month after completing the course, and his hair started to grow back after about 3 months - he now has a full head of curly hair (wavy before) and a lot darker.

Infection control is important. I took hubbys temperature twice a day to monitor him but if your dad gets a raised or low temperature, or if he feels unwell, he should report it immediately. Generally we took COVID like precautions and avoided anyone with a bug and wore a mask in crowded places. It can take a little while for the chemotherapy to get out of the system so he should not have unprotected sex for 2-3 days. Plus use a separate loo if possible and double flush it. He will be excreting the drug out of every orifice so avoid kissing. It will also be in his sweat so I made sure that all his clothes, bed linen, towels etc were washed separately after the 3 days. I also kept an eye on his blood pressure.

It is now 8 months since his last cycle and everything is back to normal plus he is feeling better than ever.

On a final note, there are treatments available further down the line if necessary. Your dad will be monitored to see how well these initial treatments have worked and hopefully his PSA will drop very low and stay there. If the PSA starts to rise then they will check what is causing it and devise a plan to deal with it. There is a plan B C D .... if necessary.

I hope everything goes well for dad. Let us know how he gets on and, of course, come back if you have any questions.

Hi

Side effects my middle name, first surprised they said there is no more treatment after this ? Anyway eight years ago I went through the chemo, radiotherapy and hormone, on my third treatment I caught sepsis in hospital for five days. On that occasioni had brown nails, feet felt like I was walking on gravel, loss of hair, fatigue and tiredness, the odd headache lack of taste.

Eight years later, back on chemo, super fatigue and tiredness, can barely walk anywhere, lack of strength, hands hard to grip anything and buttons forget it, dyhorea stomach pains compleat lack of taste and hair loss, plus an agreevating cough and blurry eyes.

Remember we’re all different you might only get a few of these things, so stay positive and fight as best you can.

Stay safe

Joe

Hey Zoey,

Thanks for sharing your story on here. It sounds like your dad is a couple of months ahead of my dad but diagnosis is very similar. 
I’m surprised to read that they have said after this treatment there is no other treatment options. I’ve seen members on here say they have been offered another round of chemo and given your dad’s age I’d assume if it works, surely they would offer it again further down the line. Maybe some of the other members with a similar diagnosis will be able to provide more clarity. 

If you ever need a chat, feel free to reach out xx

Hi Zoey88.

Good morning it's great to meet you on here today sorry to hear about your dad's PC diagnosis though.

Yes I was also diagnosed with Terminal Prostate Cancer last June but I was put on to HT and that has been my only medical Intervention to date.

This has brought my PSA down from 1000+ to 0.9 and I have got my next appointment with my consultant next month to see how the PSA numbers are at???

I have been told that my next course of treatment will be chemo but the consultant seems to think that I won't be "strong enough"

All I will say is "bring it on" 

Mind you there's new treatments coming out all of the time so hopefully we can take advantage of these???

Prostate Worrier.

Thanks everyone for you responses, it’s much appreciated. I’ll be sure to mention the other treatment options you all talk of should we need it further down the line. Really helpful to hear of other peoples similar stories. Thanks so much for taking the time to respond. I’ll let Dad know all the information you have all kindly shared. 

Hi

This is really interesting and informative. I had no idea that it could be still active through bodily fluids. None of this is mentioned in the leaflets.

My husband is concerned we might have to sleep in separate beds during treatment for the first few days.

Hi GilliB .

With the Docetaxel it is OK to sleep together and have your cuddles, just use a condom if you make love and both shower straight after - could be fun. The only time you have to be careful is if there are any little accidents or spills - some men have difficulty aiming straight so it should be cleared up with toilet roll plus rubber gloves and the paper flushed down the loo. There is one treatment called Lutetium 177 where you do have to keep a distance from everyone else for a few days but that is something for the future and hopefully you will never need it. Also if he has a PSMA PET CT scan or a nuclear bone scan you are advised to keep your distance from pregnant women and children for a few hours.