Chemo - what to expect

Hello Anna. I am glad you have a plan - was any mention made of Triplet Therapy which is a combination of the chemotherapy, the hormone therapy injection plus a hormone therapy tablet. The reason I ask is that there is some research which indicates it is important that the tablet and chemotherapy are started at the same time or the chemotherapy starting and the tablets being initiated no later than 1 week after, but not before. Did they mention which chemotherapy drug he is having?

As far as the possibility of sepsis developing then yes it is a possibility at any time during the whole of the treatment but your husband doesn't need anyone sitting watching over him. Can I suggest that you firstly find out what his normal temperature is by taking his temperature over a few days to get his baseline figure. We then monitored what it was twice a day during the whole of the treatment. We also have a blood pressure machine which can help monitor blood pressure, pulse rate and ours also shows irregular heartbeat - again getting a baseline figure before treatment can help. If you really want belt and braces you could also get an oximeter to measure Oxygen levels which give an indication if the bloods start going out of kilter.

When hubby was having chemotherapy we found that each 3 weekly cycle followed the same pattern so keeping a diary of how he felt and side effects was useful to allow us to plan activities. Some people sail through with few side effects, others find that it wipes them out physically for a few days. Your husband will be monitored very closely during his first infusion but he will also be given supportive drugs to minimise the side effects such as nausea. He will also have regular blood tests before each cycle to check that he is well enough for the next one.

We will give you some tips on diet and precautions nearer the time, particularly to keep you and the children safe.

Hi Anna42 , welcome to our club and sorry your OH and you have joined it.

Chemo is scary, but most people don’t have a problem.  Out of all the posts on here, I have only read one other person (other than me) have that problem.  As you know, chemo is delivered in rounds and each round tends to follow a similar pattern, so it is worth keeping a diary.  I had no reaction day 1 (Monday) but on Thursday I started to feel slightly odd with ‘chemo brain’ but this started to go by the weekend.  Over the sessions, fatigue was a progressive theme.  My bloods started to get very low counts and all immunity went so picking up bugs was something I tried to avoid, but broadly sensible Covid like precautions.  I did get a high temperature after round 3 and went to A&E immediately and had IV antibiotics administered but developed pneumonia.  I would stress that this is very much an exception but you need to be aware.  I was certainly able to self diagnose during this time and didn’t need to be watched but it is important to take your temperature if it looks like going up.  My suggestion would be to take the kids out, it will do you all good to keep some sort of normality.
Keeping fit and a good diet are very important before and during the cancer journey.  Please ask any questions.  David

Hi Alwayshope yes sorry, you’re totally correct. It’ll be triple therapy - he’s on hormone injection now, and he’ll start darolutimide and chemo (docetaxol) on 12 March. We found out this week that his PSA has come down from 182 to 9 in 3 weeks on the hormone tablet, so we were really relieved. Our oncologist also wasn’t as concerned with the genetic mutation results as we thought - she basically said we knew already that it is aggressive cancer (Gleason 10) so the CDK12 loss doesn’t add anything to that. A massive lesson learnt not to try to understand medical reports and spend 5 days googling and panicking before seeing the oncologist… Hope your husband is doing ok? I’ve been thinking of you both xxx

Hi Anna. That is the most effective combination so good news. We will hold your hand through this and help with any questions. 

Hi Anna42, my husband has had the triple treatment and during chemo he had a few days of tiredness but work at home doing things like building, digging the garden because some sort of exercise does help, hopefully all goes well for your husband.

All the best 

Hello Anna42,

I'm on triple therapy and had the docetaxel chemo element last year. I wrote a blog about my experience if you're interested in having a read. 

I'm afraid my IT skills don't stretch to inserting a link to it but if you click on Blogs at the top of the screen mine is on the 2nd page entitled Prostate Cancer Recurrence - Triple Therapy.

If there's anything you want to ask about the "experience" just ask and I'll do my best to help.

I hope all goes well.

Derek.

I started Docetaxel in August 2023.
6 sessions in total and finished in December 2023
The sessions were 3 weeks apart

Apart from an unexplained issue a few days after the first session, where it felt like I'd been stabbed in the ribs that persisted every time I moved for 8 days, the sessions were OK

Hair loss- everywhere except my eyebrows and eye lashes - Weird

Change of taste- because it also kills some of your taste buds things don't taste like you expect them to. Usually this means they taste horrible

Get some ginger ale - it helps with the nausea. 

Keep hydrated. Even water tastes horrible. I found Robinsons Lemon squash helped me but what ever works for you

He will feel knackered but eventually all the symptoms improve just in time for the next session.

Get a digital thermometer(The kind you stick in your ear and an Oximeter for measuring blood oxygen) - they're not expensive but very useful to have at home

I still managed to walk the dog twice a day but sometimes it was a challenge. I had to stop for rests.
Other times it was just sheer willpower that made me keep going.

I remember after the 5th session I was kneeling down to put my walking boots on and I didn't have the strength to stand up. Took me a few minutes but I managed it.
Another time I didn't have the strength to walk into a headwind(on the beach) but I thought "I can't stay here" and forced myself
I just use these two examples of what they mean when they say 'fatigue' is a side effect - it's a BIG side effect

I got a good result in the end my PSA came down.
It's lower now as they started me on Abiraterone and Olabarib as when I was only on the 3 monthly injections my PSA started doubling every three months
It's now below 0.03 which is the lowest my local hospital can test for.

The hair I had before the chemo has grown back(sort of) but it's not the same texture as it was before the chemo

Good Luck!

Hello Anna (Anna42) 

If it helps here's a quick link to Derek's (excavator)'s blog.

 Prostate Cancer Recurrence - Triple Therapy 

Best wishes - Brian.

Hi Anna42,

My husband has now done 4 of 6 cycles and is on the triple journey too. He says take your own magazines or whatever distraction you prefer; own biscuits and flask of tea. What's on offer is OK, but not the same as your own stuff. His appointments have always taken longer than expected, but he's messaged me to let me know what's happening. He had a chest-pain on the 1st cycle, and various consultations were carried out and it was decided to continue at half-speed. This set the pace for subsequent cycles.

Keeping a diary is a great idea. My man describes the cycle in three phrases: fatigue, fragile and nearly-normal. Fatigue is pretty overwhelming, he just needs space and time to just flop; however, much-received advice has been that "the cure for fatigue is exercise" so getting out for even the shortest of walks will help getting over it. Fragile is probably the most difficult period to manage - he says he feels mostly OK, but then just needs a break. My man's normally very talkative, and in this phrase the fragile-ness seems to make him talk nonsense. I've tried to be subtle, but he just needs to get out of company - like hitting the re-set. If you've dealt with tired toddlers, then you are probably better experienced than me at managing this kind of situation. Also, he's been a little more accident-prone in this phase - nothing major but I'll not let him use power tools unsupervised. He's been lucky never to have nausea, but I believe some of the tablets he's taking might be managing this aspect. He also has acupuncture immediately before, after and half-way through the 3-weeks. The phases seem to be different lengths each time and have kicked in at different times - usually fatigue starting within 24 hours of the chemo, but not always immediately. It's sneaky!

I think they brief you up on the risk of sepsis to put you on alert, and ready to react if something does occur. The advise here about thermometers and oximeters is practical - good to know how to use them, but hope you never have to "in anger"!

Best wishes that it all goes smoothly for him.

C.A.

Just a quick message to say thank you so much for all of the responses. I haven’t been as active on this forum for the last couple of weeks as I’m trying to manage our “new norm” of coping with this diagnosis but I am so grateful for all of the support you have given, and your pearls of wisdom. It’s amazing to know we’re not alone with all of this xxx