Hello

Hello XK8  A warm welcome to the online Prostate Community. I am so sorry to read of your issues and really pleased that you have had 8 years since diagnosis.

We have lots of Community members who have had or are having Chemotherapy and I am sure if you have any questions, however trivial you feel they are you will get some answers.

I wish you well with the treatment plan.

Best wishes - Brian.

Hello XK8.

A warm welcome and hopefully we can give you some pointers. My husband completed 6 cycles of docetaxel in October. Like you he had radiotherapy and is still on hormone therapy for life. He was dreading it initially but found that it was not as bad as he thought it was going to be. Some people get away with few side effects but my husband suffered from quite a few but they were managed with drugs. The first thing to remember is that the chemo kills good as well as bad cells so you are going to be more at risk of infection for the duration of treatment so make sure you are up to date with flu and COVID jabs before treatment starts. We then adopted COVID like restrictions by wearing masks, washing hands frequently and avoiding anyone with bugs. The first cycle can be the most stressful because you don't know what to expect and no one knows how you are going to react so you will be monitored very closely and it is important that you tell the team exactly how you feel as they can make adjustments if necessary. Your session is going to take anywhere between an hour and four hours so make sure you take something to do as well as a snack and something to drink. Each cycle is usually 21 days and my husband found that days 3-5 he was pretty wiped out and had muscle and bone aches for which he took paracetamol. Days 6 - 8 were improvement days and from day 9 - 21 he was pretty much back to normal. It is not advisable to drive because the Docetxel uses alcohol to get into solution so you could be over the limit, plus you may not feel well enough to drive - on 2 occasions my husband was as p****D as a newt on the way home and very drowsy. You will probably be given steroids to take the day before the infusion, during infusion and post infusion to help prevent side effects, plus an anti sickness drug. You will then be in the routine of having blood tests before each cycle to check that red and white bloods are still in balance , as well as monitoring kidney and liver function. If they are out of kilter you will either have to wait until they improve or you will be given drugs to rebalance.

I would recommend getting a thermometer to first find out what your normal temperature is and then I took hubbys temperature twice daily to check that he hadn't picked up anything. I also checked his blood pressure and Oxygen levels.

You might find that your taste alters, this is common because the chemo kills all fast growing cells in your body such as those in your mouth and gut, as well as hair. If you are worried about hair loss then ask for a cold cap - my husband ended up looking like a Mohican. You will start to lose your hair around day 10 of the first cycle so I put a towel over his pillow which made it easier to clear up in the morning. He finished shedding by the end of the first cycle.

The Docetxel will be in your system for up to 3 days and you will be excreting it from every orifice so be careful who you kiss and if you have sex then make sure you wear a condom. Don't share towels and I washed the bedlinen and clothes, towels etc after the 3 days separately from mine. If you have a separate toilet then use it.

Food wise avoid things which might irritate the digestive system such as strongly spiced foods. No unpasteurised food. Eggs only if they are well cooked. Don't eat anything that can't be well washed such as salad leaf. I generally only served up cooked food plus I found that feeding him little and often kept his gut in balance and it staved off the nausea. It was a bit trial and error finding things that he could eat and drink but am pleased to say he is back to normal now.

I am sure I have forgotten many things but someone will come along and add their bit.

And on a final note my husband is feeling better now than he has done in a long time.

Please come back with any questions and I hope everything goes well for you.

XK8, hello and welcome to the site.  It is great to hear from another survivor of many years!

Alwayshope has described the process very well, but if you have any questions please shout.

I had Docetaxel 6 years ago but only managed 4 rounds.  I was warned to be careful if I got an infection and one evening after round 3, I suddenly felt hot.  My other half took my temperature and it remained high for 30 mins so we went to A&E.  After getting through the Rottweiler I was immediately put on antibiotics for Neutropenia.  I think my experience was quite rare but something your team should warn you about if your temperature goes up.

You mentioned that originally you hadn’t metastasised, can I ask how you became aware that it had?  After chemo and RT my PSA has remained low (around 0.1) but in the last few readings is creeping up.  My oncologist won’t change anything until my PSA reaches 2, so hence my interest.  

I hope the chemo goes well, I am sure you will manage ok.  Keep positive.

David

Morning David.

Good warning about neutropenia. My husband's white bloods dropped during first cycle and he was put on Filgrastim for each cycle. His red bloods then dropped during the third cycle so he was put on Epoetin alpha for the duration. Everything soon got back to normal after last cycle.

We have been through the recurrence cycle twice now and each time it was confirmed by MRI and CT scans as it was the lymph nodes which were involved. He also had a PSMA PET scan which lit up like a Christmas tree.

Thanks Alwayshope and David, your comments very helpful.

My hormone therapy worked well for some time, Zoladex every 12 weeks. PSA started to climb again and put on Enzalutamide which zapped it for about a year. PSA climbing again, now approx 25, so more scans which showed some metastasis to the pelvis which is causing me some intermittent pain in the perineum. Hence the need for chemo now. Plus it attacked my kidney so have an ureter stent which gets changed every 6 months.  Obviously getting pretty fed up with all this.  Trying to keep positive and get plenty of exercise every day to keep my fitness level as high as feasible.

Some useful help at PCaSO WhatsApp Group and PCUK Nurses help line.  I have been able to help others going through hormone and radiotherapy, so really appreciate any help with chemo. 

Regards Steve (XK8)

Steve,

Thanks for the update.  Sorry to hear the spread, but new drugs that weren’t around a few years ago are now in the Oncologists armoury.  I just had my 3 month PSA today and anticipate I will be put on Darolutamide in April.  
I am sure you will fly through chemo without too many side effects, fingers crossed.  Just ask if you have any worries.  
Best wishes

David