Support and Advice

User

Posted 27 Jul 2022 at 15:36

Hi all, Mike's PSA test last week showed that there was no change from his very first one which was 57.9, the latest one is 57.8. I was hoping that since he started the bicultamide hormone tabs a few months ago, also had his first Decapeptyl 3 weeks ago hisPSA level would be down quite a bit. Am I hoping for too much??.

User

Posted 27 Jul 2022 at 16:51

That is very strange - give the oncologist or nurse specialist a call and let them know.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jul 2022 at 18:00

Hi Lyn, Mike is starting his chemotherapy treatment on Friday. He had another blood test today, I would have thought that the Oncology nurse would be aware of this?. Also, I sent a text to someone I know who was the lead for Prostate Cancer in one of the large acute trusts in Birmingham. She told me that it would take time for the PSA to go down post-Mike's hormone treatment. It has made me feel more anxious that his result is almost static.

Having looked at Mike's results online via patient access, the PSA results for the last three tests were identical - ie 57.8. Can the reporting be an error?.

User

Posted 27 Jul 2022 at 19:31

Three tests exactly the same is very unlikely, you would expect some variation, and indeed by now you expect it to have fallen quite a lot.

Dave

User

Posted 27 Jul 2022 at 20:15

HI Dave, thanks for your response. I am not sure what to think now especially as Mike is still pain-free, continuing to play competitive tennis 3 times a week and badminton once a week. Of course, tomorrow is his last badminton match as he starts his chemotherapy treatment on Friday.

Hope all is going well for you. Take care.

Maud

User

Posted 27 Jul 2022 at 21:46

Yes you would expect the nurse to be aware then. Worth checking that the result isn't a recording error; as Dave says, you would expect some variation between the 3 results even if it isn't coming down rapidly.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 29 Jul 2022 at 19:05

Hi all, Mike had his first chemotherapy treatment this morning and all went very well. He wouldnt let me drive him home as he felt really well. Since coming home Mike has so far not felt any side affects at all.He remains very active, eating well and not feeling nauseous or tired. I am not sure how long this will last?. Has anyone had similar experiences on the first day of chemo?. I have a feeling that in a few days time things may change, however I am not going to say anything to Mike as I dont want to dampen his enthusiasm . Any feedback please would be great as this is all new to both of us.

User

Posted 29 Jul 2022 at 20:56

If he has any bad days, it would usually be between days 5 - 8

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Aug 2022 at 21:13

Hi All, we have reached day 5 of Mike's post chemotherapy treatment. So far all is going ok. He played tennis on Tuesday, today he felt slightly lethargic but remained quite active doing gardening etc. He is planning to play badminton tomorrow much against my advice.

A key side affect for Mike is the metallic taste in his mouth, however he is eating ok so far. He loves yoghurts especially the strawberry and ginger flavoured ones. However I was told that eating bio live yoghursts is not good when having chemotherapy. Does anyone have comments on this as Mike has been having yoghurts every day with some ice cream. He is eating plenty of vegetables, fruit, fish and some nuts as well. The Oncology nurse did not give Mike any advice on what food to eat and avoid.

Looking forward to your suggestions please.

User

Posted 05 Aug 2022 at 10:57

Hi all so I found out yesterday that Mike should not be having bio live yoghurts from a nurse working in the chemotherapy dept. However the Clinical nurse specialist for prostate cancer told me that eating these yoghurts are okay as long as Mike is able to tolerate it. Apparently it can cause diarrhoea and if this happens the staff wont know if its due to the chemotherapy or the yoghurts. So to be on the safe side Mike has agreed not to have any until he has completed his six cycles of treatment.

Today being day 7 he is having a few more side affects - the metallic taste in his mouth continues plus cramp and some ankle pain which goes away fairly quickly. Also now getting up at least once if not twice in the night for a wee which he has never done before. He has increased his fluid intake as advised by the nurses so maybe this is the reason. I am hoping that when his next PSA is done there is a drop in the level.

Take care all and thanks to everyone for your support, its been a real life line for me especially as Mike is not keen to take up any offers of support from Macmillan or the Prostate Cancer Uk support team.

User

Posted 13 Sep 2022 at 22:31

HI All, so hubby had his third chemotherapy cycle last Friday. I have to say this time round he has had a nasty spell of diarrhoea for two days. It just seems that whatever food he has eaten has gone straight through him. Do the side effects become worse as one has more cheotherapy cycles?. He is definitely loosing weight and I can see the weight he has lost in his face. However he was told last Friday that his PSA was 0.02 down from 57.8 and the nurse told him that this was good.

I am getting more worried about him even though I am told not to worry especailly as Mike was doing so well in particular after the first two cycles. Mike did play tennis on Monday, cancelled today and is hoping to play tomorrow.

We are gonig on holiday on the 25th September for 9 days and I am just hoping that Mike will be okay by then as I booked this holiday as a special treat for him.

Best Wishes.

Maud

User

Posted 13 Sep 2022 at 23:07

I don't know enough about chemo to comment on side effects. Good that his PSA is responding well. Also good that he can still manage some tennis. Hopefully he will be ok for the holiday.

Dave

User

Posted 14 Sep 2022 at 00:58

Yes, people often find that the side effects are cumulative - they get a bit worse with each round of treatment. But also it may be that the diarrhoea has nothing to do with the chemo - is he being really careful about what he eats, hygiene and avoiding infection?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Sep 2022 at 01:02

Sorry Maud, I missed your previous post about yoghurt and sore mouth. Has anyone mentioned freezing chunks of fresh pineapple for him to suck during the infusions? It reduces the metallic taste and protects the mouth from ulcers, etc. Important not to have a lot of pineapple if he has heart problems though.

I think people on chemo are supposed to avoid seafood and soft cheese? Worth checking with the onco nurse perhaps?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 15 Sep 2022 at 17:32

Hi Lynn, many thanks for your advice regarding the frozen pineapple chunks. Mike is now feeling better even though he is not able to taste the food he is eating. The only other side affect he is getting is cramp like pain in his left ankle and only at night. I wonder if it is to do with the injection Filgrastim he inserts every night into his abdomen. This is for 5 days after his treatment. He is definitely not looking the same as before all this started and has lost weight. HOwever with regard to his social activities he played tennis on Monday, Wednesday and badminton today. One of the questions I I want to ask is the effect chemotherapy has on personalities. I do feel that recently Mike is becoming more forgetful and sometimes slightly off in his manners. I do remind myself that this is not his true personality but I am sure it is the result of his treatment?.

I hope your hubby is doing well and you are both taking care of yourselves.

User

Posted 09 Oct 2022 at 16:27

Hi Lynn, thanks for your adivce regarding frozen pineaple chunks. Interestingly on Friday when Mike was due to commence his 4th chemotherapy treatment the nurse without prompting recommended fresh pineapple chunks ( a small amount) to be earen before meals. This has helped with the taste and Mike is not getting the metallic taste as much now. He is doing well now and I am so pleased to see that his PSA is down to a stable 0.02 from 57.8 and alkaline phosphatase down from 213UL to 60. The nurse was very pleased with him and of course I am delighted and keep all fingers crossed it stays like this.

Just one query regarding food, is it okay to have sour cream as I like to serve it with a chilli?

Maud

User

Posted 09 Oct 2022 at 18:47

Sour cream is pasteurised so should be absolutely fine - it is unpasteurised dairy products, uncooked fish, raw eggs that need to be avoided due to risk of bacteria

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 24 Oct 2022 at 20:29

HI All, how important is to take a daily temperature. My hubby takes his every morning and the temp varies from 35.2 to 35.4. However when has his chemotherapy treatment his temp is around 36.5 to 36.4. He spoke to the nurse today who told him that he needs to purchase another thermometer as his readings are too low. He feels okay and continues to play tennis and badminton. Has anyone been advised to take their temperature eevery day?. I feel hubby is becoming concerned now after what the nurse told him this morning. Any comments or advice would be greatly appreciated. Maud

User

Posted 24 Oct 2022 at 22:41

It is important to take his temperature regularly because you must get medical advice without delay at any sign of infection. Whether that needs to be every day or just during the riskiest period or just if he feels a bit off is really up to you and his chemo team but it is coming up to flu season and the current variation of covid seems highly contagious so daily testing seems wise to me.

I think the nurse is suggesting that your thermometer isn't reliable?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Oct 2022 at 12:34

Thanks for your advice Lyn, I have encouraged Mike to continue to take his temperature daily and it ranges from around 35.2 to 36. Apparently according to the information sheets he has this is within normal limits.

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