Support and Advice

Support and Advice

User

Posted 06 Jul 2022 at 08:51

Originally Posted by: Online Community Member

We will wait for the next stage of our journey and see what the Oncologist has to say. Our Consultant said Mike will need Chemotherapy in tablet form. I hope we don’t have to wait too long to start treatment 🤞.
Warmest wishes to you.
Maud.

He has already started treatment Maud, the hormone therapy. The tablet form of chemotherapy that he referred to will probably be abiraterone or apalutimide, which he will take in addition.

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

User

Posted 06 Jul 2022 at 18:54

HI All, hubby and I are planning a holiday in September. Mike is very keen to go abroad, however I am more cautious due to his Gleason score of 10 and cancer spread to the bone, lymph nodes and lungs. Has anyone been abroad with similare diagnosis. We are not sure if it is worth taking a risk?

Maud

User

Posted 07 Jul 2022 at 00:08

Definitely go on holiday and enjoy yourselves. Gleason 10 is not going to affect holidays. Spread to bone mets, well theoretically he is at more risk of broken bones, so skiing and snowboarding are perhaps a little risky. The HT will probably stop mets doing any harm for a few years, and any deteriation in likely to be gradual not sudden.

I wouldn't want to travel to USA with a medical condition but certainly wouldn't hesitate with Europe.

You may find travel insurance very expensive, you can exclude existing conditions and it will be cheap again, but if anything goes wrong things might get awkward.

Dave

User

Posted 07 Jul 2022 at 07:36

Thank you Dave, for your encouragement and advice. Well thank goodness Mike has never liked to ski👍 I will need to look at travel insurance as I imagine it will be very expensive which may restrict where we go.

User

Posted 07 Jul 2022 at 08:00

Take the holiday, stick to Europe though...

User

Posted 07 Jul 2022 at 21:02

Hi Maud my husband has a similar diagnosis. G10 and spread to sternum and extensive lymph nodes. His psa is thankfully stable at the moment.

We got insurance in January for ourselves and two adult children through Worldwide Travel Insurance. It was a few hundred pounds but not too bad.

We’ve been on a weekend away in Europe and are going to Europe again for a week soon, then America later in the summer. Worldwide covers us and him in America. We figure that we need to go away as much as we can while he can still get reasonable insurance premiums.

One thing to note, he told the companies when he first tried to get a quote that his cancer was ‘terminal’ not ‘incurable’. Made the difference between them saying no or yes to insuring him.

User

Posted 07 Jul 2022 at 21:11

Hi Skye, thank you for your very helpful information regarding holiday insurance. It is so reassuring to see that having a diagnosis such as my husband, does not mean traveling abroad is out of the question. He has an appointment on Tuesday to see the Oncologist and hopefully, once his treatment commences we can then go ahead and book a holiday in Europe. I have insurance with Lloyds TSB which also covers Mike so will get a quote and see what happens.

All the best wishes to you and your husband and hope you both continue to have many holidays together.

User

Posted 11 Jul 2022 at 16:27

Hi All, hope you are keeping well and enjoying the summer weather and also managing to keep cool.

I have booked a holiday in late September on a UK British Isle cruise. I will need to get an insurance for Mike and would welcome any advice from yoursleves on where to go for the cheapest rates. We are seeing the Oncologist tomorrow so will at least know what the next stage of Mike's cancer journey is.

We went away for the week end to Sherborne. Mike drove all the time and I must say he was absolutely fine. He played tennis this morning and will carry on doing this as long as she can which is brilliant for his mental health and well being.

Take care everyone and I look forward to any advice or suggestions on holiday insurance please.

Kindest Wishes

Maud

User

Posted 11 Jul 2022 at 17:35

This is a very low risk holiday, presumably you never leave UK territorial waters, treatment on the NHS is available all the time, even if you need air sea rescue to get to the hospital. If the prostate cancer is increasing premium just exclude it from cover.

Dave

User

Posted 11 Jul 2022 at 17:58

You might need to check if you need your passport. My parents did a similar trip and were not allowed on board without a passport even though they did not leave UK territorial waters.

User

Posted 11 Jul 2022 at 18:55

Hi Dave, apart from Portsmouth and the north of Scotland, we would stop in Belfast, Isle of Man. So you are right as we should still be covered by the NHS. We were asked by Saga about taking insurance cover, what would the insurance cover?.

User

Posted 12 Jul 2022 at 19:39

Hi All, Mike saw the Oncologist today and he took us through the biopsy test results. He confirmed the cancer had spread to the spine, lymph glands and a few spots on the lungs. The liver was ok. He explained that Mike had two options for treatment - the first was to go for chemotherapy and the second optioni was to have the tablets ( I cant remember the name). However he strongly suggested Mike should go for chemotherapy as he is so fit and well and would therefore be able to tolerate it a lot better. So Mike is now not sure what to do, his first choice is to go for the tablets. Because his Gleason score is 10 which we are told shows that the cancer is very aggressive that is why chemotherapy was suggeted.

I am so upset with all of this, interestingly unlike the Urologist who was more positive,the Oncologoist gave me the impression that Mike's life expectancy was not good Maybe I am over reacting. Mike is taking this in his stride and as I speak is haveing his daily shot of whiskey. Any comments and shared experience would be greatly appreciated.

Maud.

User

Posted 12 Jul 2022 at 21:07

I think when an oncologist recommends chemo first and then tablets, that is what you should do - they are experts in their field. Research shows that chemo can make the tablets work better and for longer.

The chemo is probably docetaxel - most men tolerate it quite well and he will probably be able to continue enjoying his tennis apart from a few days in each cycle where he might want to avoid people in case he gets an infection.

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

User

Posted 12 Jul 2022 at 21:30

Hi. Sorry to hear this and I hope he and you are ok. I feel, as above, that going with the oncologist view, given Mike’s fitness, would seem the best course of action at this point. Good luck with it all.

User

Posted 12 Jul 2022 at 23:00

Thank you Lynne for your positive message . Mike has decided to have chemotherapy and we were told the waiting time is between 2 to 3 weeks. He read up on all the side effects of chemotherapy and it was that which put him off having it. However he knows that it’s the right thing to do.

User

Posted 12 Jul 2022 at 23:05

Thanks Mike for your good wishes. Just wondering how you are getting on with your treatment. Hope all is going well.

User

Posted 12 Jul 2022 at 23:15

Sorry to read this news again Maud.

Glad Mike has made his decision for chemo, I’m sure he will do really well. Reading the possible side effects is always a worry, but it’s really unlikely he will get them all and a lot seem to get very few. I think if we read all the possible side effects of paracetamol etc before taking we would probably think twice.

The main thing is that Mike continues to feel well, it’s great that he is continuing his sports….I’m sure it will make a huge difference physically and mentally.

Hope you’re ok too. Take care x

User

Posted 12 Jul 2022 at 23:22

Originally Posted by: Online Community Member

All chemo has risks but the side effects of docetaxel are generally milder than for other chemotherapies. My father-in-law had it at the age of 79 and his biggest problem was the horrible metallic taste in his mouth and mouth ulcers - this was resolved by sucking frozen cubes of fresh pineapple during the infusions (but you should check with Mike's doctor because people with heart problems mustn't have too much pineapple). His other big problem was that his wife wouldn't let him go to the pub on days 5- 8 in case he caught some bug!

If Mike finds it unbearable, he can always stop early - even having just 2 or 3 infusions seems to provide a benefit.

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

User

Posted 13 Jul 2022 at 02:43

Originally Posted by: Online Community Member

Thanks Mike for your good wishes. Just wondering how you are getting on with your treatment. Hope all is going well.

Hi Maud, thank you. Hormone treatment is going ok albeit with some pretty harsh side effects at night (flushes and insomnia). I see Oncologist Thursday this week for the next steps, I expect something similar to your situation but we shall see.

Take care.

User

Posted 13 Jul 2022 at 10:20

Hi All, has anyone gone on holiday between having chemotherapy sessions please. We booked a UK cruise on the 25th September for 9 days. Mike is hoping to start his chemotherapy in around 2 to 3 weeks time. The Oncologist said it was ok for him to take his holiday especially as he is not travelling abroad. However I just wonder if anyone else has done this and what their experience was like. Also I am assuming we will need to let the insurance people know.

My husband is such a warrior, he is so matter of fact about all of this and I feel that due to his posistive attitude he will pull through this journey well.

User

Posted 20 Jul 2022 at 10:17

HI All just to update on the latest development re Mike. Saw the Oncologis last week and we were told that Mike has T3bN1M1c. So a very aggressive cancer and confirmed as stage 4 metatastic . So he starts his chemotherapy treatment a week on Friday and we had his assessment meeting yesterday with the Oncology nurse. She was very thorough and whilst there was so much information to take in at least we were given the written stuff as well. I dont know how I feel anymore as the final diagnosis whilst it was verbalised to us to then see it in writing was another shock.

Apparently the bone scan has showon multiple bone metastases invnolving the thoracolumbar spine, bilateral ribs, bilateral hemipelvis, right humerus and right femoral shaft. he CT scan has shown metastases in the right pubic ramus, left acetabulum, left posterior ilac wing, bilateral ribs and spine. Also small lung nodules. Nothing in the liver! I was in total shock when I read the report from the Oncologist. Despite all of this Mike continues to play tennis as if there is nothing wrong with him. Even the Oncology Nurse who was at the meeting with the Oncologist told me on the phone that the findings somewhat do not match the evidence when she saw Mike and how fit he is. The Oncologist was just as taken aback. I am not sure what to make of it all, however I am staying strong for Mike as its the least I can do for him.

Hope you are all okay and looking after yourselves in this hot weather.

User

Posted 20 Jul 2022 at 12:33

Nothing in the liver!

Well I always try to look on the bright side so I think we have to cling on to that one. Let's face it there isn't anything else good in that report. However at the moment Mike is doing well, so I think you will have to go with the flow and enjoy life as much as possible. In some respects the treatment is going to be worse than the disease, but he was already getting pain before the HT, without treatment I think things would very soon have got a lot worse.

Hopefully he will respond to the chemo well and the side effects won't be too bad.

Dave

User

Posted 20 Jul 2022 at 15:59

Hi Dave, yes I agree with you re looking on the bright side of things. Its just in my head I cant somehow match the awful report findings with the clinical evidence that Mike displays. Even the Oncologist appeared baffled espeially when the WHO performance test was zero and his clinical examination of Mike was also 100 percent positive. When he pressed on the spine to ascertain pain and Mike felt nothing the Oncologist was baffled. So my questions is when the pathologists read the biopsy findings do they get it wrong?. I know it is subjective depending on the pathologists own interpretation?. Maybe I am just clutching at straws. !!

Mike came back from playing tennis this morning and one of his tennis mates said how well Mike was playing!

User

Posted 20 Jul 2022 at 17:05

To get it wrong from all these tests is very unlikely. Mike has had MRI, biopsy and bonescan that's three tests all confirming each other. Now we have had one person on here who had his biopsy results mixed up, when they did the post op histology they had a perfectly healthy prostate, a legal case followed. For all I know we might have several other people on here where things got mixed up and no one ever knew. But the chances of it being a mix up with Mike are vanishingly slim.

HT can really knock the cancer back, so the fact he feels well is a sign the treatment is working. You can look up life expectancy for people with various diagnosis figures and on the face of it it would seem three years would be Mike's life expectancy, but we have had people on here for 15 years, so for some the HT works for a very long time.

Dave

User

Posted 20 Jul 2022 at 19:41

Hi Maud. Sorry to hear about this. Your husband and I are very similar, much be the shared name! I had much the same news at my oncology appointment and there is nothing for it but to stay active and positive. If you need any support then make sure you get it too. I worry more about my wife more than I do myself to be honest.

Take care Maud.

Cheers

Michael

User

Posted 20 Jul 2022 at 20:17

HI Michael, thanks for your support. I also hope that whatever your news was at your oncology appointment you will commence treatment asap. I hope they have offered you a choice of treatments as my Mike was. Having done a lot of research on life expectancy it is not all doom and gloom. Of course the chemotherapy treatment hopefully will have a positive impact on you as I am hoping it will on my husband. I will phone Macmillan tomorrow and ask if I can have some counselling as I feel I need to share my thoughts etc with someone with experience in these areas.

Take care of yourself and keep in touch.

Maud.

User

Posted 20 Jul 2022 at 20:19

Take care of yourself and keep in touch.

Maud.

User

Posted 20 Jul 2022 at 21:53

Also look to see where your nearest Maggie's centre is, Maud

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

User

Posted 21 Jul 2022 at 15:57

Thanks Lyn my nearest centre is Coventry. I rang the Macmillan nurse specialist for prostate cancer this morning and she was absolutely brilliant. She definitely knew everything there was to know about the management of hormone therapy and chemotherapy treatment for prostate cancer. She is the first clinican to explain in great detail how the treatement works on the cancer cells and in all was very reassuring. I feel so much better now and definitely recommend speaking to the Macmillan nurses.

Maud

User

Posted 26 Jul 2022 at 18:08

HI all, does anyone know how long the chemotherapy takes to administer. Mike was told it would only be just over an hour and also he could drive home after. I am surprised, however I am taking him there and will be picking him up.

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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