Chemo 10 cycles

Hello Bonjon A warm welcome to the Prostate Cancer forum.

I am so sorry to find you here but you are in the correct place for help and advice. I can't give you the answers you are after (I am on the HT/RT journey)  but there are Community members here who have travelled the same journey as you are about to embark on and I am sure you will have some replies later.

To save people asking may I suggest you update your profile page to include a little history regarding your husbands diagnosis and treatment to date - this will ensure you get the best answers.

You may also like to join the Chemotherapy forum where people on a similar journey can discuss their treatments etc.

I wish you both well with your husbands treatment and if I can do anything for you please don't hesitate to contact me.

Best wishes - Brian.

Hello Bonjon.

A warm welcome and can I say you have come to the right place for information and support. I am sorry that your husband has started on this rollercoaster of rising PSA'S and rounds of treatment. The thing we have learnt is that everyone's journey is individual so it is difficult to predict what is going to happen, how your husband is going to react to treatment and how effective it is going to be. My husband's journey started 40 months ago when he was started on Bicalutamide and Leuprorelin (similar to Zoladex). After 18 months his PSA started to rise so he was changed from Bicalutamide to Enzalutamide. This worked for about 15 months but again the PSA started to rise so last July he started on 6 rounds of Docetaxel chemotherapy which he was dreading. Different oncologists recommend different regime's as yours has done but the total dosage of the drug is the same and it is thought that you will have less side effects with the lower dose during the 3 week cycle - but I must qualify this that some people have very few side effects at all. At the end of treatment my husband's comment was that it was not as bad as he thought it was going to be.

Firstly your husband is doing the right thing by keeping as fit as possible. I think you will be having 10 sessions which are given in 3 weekly cycles. Each session can last anywhere from 1 to 4 hours depending on how you handle each one. The medical team will go through the routine with you and keep a very close eye on you especially for the first session to make sure that you have no side effects during it, and you normally have to take steroids both before and after to reduce the chance of feeling sick and developing oedema. You will have to have blood tests before each session to check that your body is coping with the chemo but also that it is doing it's job by reducing the PSA. My husband found days 3-5 were the worst for side effects when he was not able to do much because of fatigue and suffered bone and muscle aches. From day 6 he started to improve and by day 9 he was back to doing normal things. The thing to say is that if you have any side effects then the medical team have something to deal with it apart from the fatigue. After the 6 sessions my husband soon bounced back and is feeling fine. We are now having 3 monthly blood, PSA and testosterone checks.

Whilst your husband is having chemotherapy you are going to have to be careful about infection control but if you want we can give you some pointers closer to when he starts treatment.

I can understand the disappointment and stress this rollercoaster brings but a positive attitude is essential as this releases the bodies own healing mechanism which works in conjunction with the chemo. The other thing to remember is that there are other treatments available further down the line and that science is developing new products all the time.

Please come back with any questions as there is bound to be someone who has trod the same path.

1. Hello and welcome. As usual millibob and alwayshope have got there before me . (lol).My husband had his last of 6 chemo sessions on 17 November. At the first session he had a bit of a reaction as soon as they connected him up so they slowed the chemo down to taking 2 hours instead of 1 hour. They then did this at the remaining 5 sessions and he was fine. A couple of days after each session he developed brain fog which lasted about 2 days and also a metallic taste which lasted about a week but no other symptoms eg sickness, fatigue or hair loss. I found keeping a daily record of temperature and symptoms helpful so I could check back on previous week's. We were told to check his temperature a couple of times a day and I must admit I got obsessed by it, panicking if it was going up by just one degree. My husband was given triple therapy I e the chemo and a 12 weekly hormone injection and daralutamide tablets both of which he will continue to take. I hope all goes well 

Meant to add that I wasn't allowed in the room where the chemo took place or even the waiting room before he went in so I went to sit in Maggie's center where they made me feel so welcome. If you have one at your hospital perhaps think about paying them a visit. If we were early for the appointment then husband would wait there and then go to the chemo unit about a 3 minute walk away. You might also be able to get free concessionary parking at the hospital. The chemo nurse gave us a form to fill in and take to the car park office.

Thank you all for your responses and taking the time out to do so, the info provided has been so helpful. We have an apptmt tomorrow with the Oncologist to decide whether to start the treatment this side of Christmas or if it can wait. We have a feeling that it will be this side though, which is fine we have planned to have an early Christmas day for our daughters and grandchildren anyway. I can see now that no two individuals respond to the treatment in the same way, however he is very positive with an amazing sense of humour so hopefully that will help us through it. Great info with regards what to expect at the chemo sessions, and temp checking etc Lastly, I would like some/any pointers on infection control please. 

Our oncologist said we didn't have to live in a sterile home, but I told him our house was like a show house at the best if times!!! I made sure all kitchen services were cleaned twice daily with an anti bacterial spray, towels and t towels washed daily. The week following chemo we stayed away from people. We still always gel and use wipes if we go out and before getting back in the car. They advise you don't use the same toilet for 72 hours if possible. We avoided salad and any vegetables you can't peel, shell fish and cheeses like brie and stilton. I did read not to have a Chinese takeaway but ok to buy from a supermarket and to avoid bottled water. Try not to drive immediately after chemo as you can be over the legal limit. They always asked hubbie if he was driving. 

Think about taking some food with you. We thought he would go in on time for his appointment but at the first session we were kept waiting 4 hours before the chemo started as they said they were waiting for pharmacy to bring the chemo. Luckily after that he then had another 30 minute wait and then every other appointment was on time. 

Brilliant - thanks for all that, things that I hadn’t really thought about yet. Big help.

A sense of humour is great and you will find that we sometimes go off piste here which provides well needed light relief. My husband did lose some of his hair during his first cycle which left him looking like a Mohican much to the amusement of our friends but he was more perturbed that he lost all (and I mean all) of the rest of his hair - the advantage being that he only had to shave once every 10 days.

For infection control think about what you did during COVID. Wear a mask if you are in enclosed spaces and avoid anyone with colds, sniffles, flu, COVID..... If you haven't had your flu or COVID vaccinations then do so as soon as possible and avoid children if they have just had the nasal flu vaccination as it uses a live one. As Shar has already said it is important to take your husband's temperature twice a day - start to do this before he starts treatment as this will give you an idea of what it is normally. You will be looking for either a high or low temperature as they can be an indication of infection but also if your husband feels at all unwell he should report it immediately to his medical team as sepsis can develop very quickly and be life threatening. I also got an one of those gadgets which you stick on the finger to measure oxygen levels and also have a blood pressure machine. A side effect of the chemotherapy is that the white and/or red blood count can drop and you can get an early warning sign with your BP and oxygen levels. Keeping a diary of daily symptoms will help you plan around any symptoms if he has any but also remind you what to expect in each cycle and act as a reminder for you to tell the medical team at each session. What a lot of people are not aware of is that the chemotherapy drug contains alcohol which could mean that you are over the legal limit for driving - my husband was certainly not capable of it after the session. Your husband will be excreting the chemotherapy from every orifice and his skin for up to 72hrs after the infusion so use a condom if you have intercourse and be careful kissing. If he has any little accidents then mop them up with paper towels and disinfect. If any clothes get soiled then wash separately immediately, and same with bed linen, his own towels... You get the idea. For shower gel use something non perfumed such as Dove and your husband may find that his skin needs moisturising.

Food wise Shar has given good pointers. I would also add that if you like yoghurt make sure that you heat it up to 72C, then cool in order to deactivate the bugs. Also avoid undercooked eggs, mayonnaise. The chemotherapy kills any fast growing cells which includes skin and gut lining so I tried to make sure that food was cooked or well washed before eating.

Good luck for tomorrow with the oncologist. 

I forgot about the eggs, husband can't wait for a fried or poached egg. I have told him he can have it for his Christmas dinner.