Support and Advice

User

Posted 28 Oct 2022 at 17:22

HI all, hubby Mike had his 4th Chemotherapy treatment this morning and the good news is that his PSA is stable at 0.1 and Alkaline Phosphatase at 69. Both within the normal ranges. I hope this will continue for quite a long time especially after he finishes his treatment. Also thank you Lyn for suggesting the frozen pineapple during his chemotherapy treatment. He had it for the first time today and it has made a difference to his taste buds.

Hope you are all keepiong well and safe. Maud.

User

Posted 02 Nov 2022 at 12:02

Hi all just need some advice. My husband had a telephone appointment with his Oncologist this morning and he wants to see him today to discuss options. I am surprised as Mike has had 4 out if 6 chemotherapy sessions and given that his PSA and Alkaline Phosphatase results are well within normal limits I am not sure what options he wants to discuss. Should I be worried? His oncologist is very pleased with Mike’s results. I am maybe over anxious !

User

Posted 02 Nov 2022 at 12:13

Fingers crossed it's nothing to worry about

User

Posted 02 Nov 2022 at 12:42

Thank you for getting back to me. I have in the meantime posted my question to one of the prostate cancer nurses. Mike isnt concerned at all thank goodness and of course, I would not pass on my anxiety to him. Sometimes I feel it I do go into over drive with anxiety!

User

Posted 02 Nov 2022 at 17:37

So not long back from Mike's consultation with the Oncologist. After his last chemotherapy session he will have a break for 2 weeks then start on weekly RT for 6 weeks. Also to have a course of Dexamethasone 500 micrograms. Whilst the Oncologist was pleased with Mike's progress the only negative thing he said to Mike was that the RT and Dexamethasonewill not make him live longer!. I wish he hadn't said that as we were both feeling really positive about the next course of treatment. To be honest I am not sure what he meant by not living longer as Mike wasn't told how long he has got to live. However, we are still going to remain positive and live life to the full. Has anyone had experience of RT after chemotherapy please?. I am keen to hear people's experiences and it does help me manage our expectations.

User

Posted 02 Nov 2022 at 23:27

Sounds like the onco was just trying to manage your expectations but worded it a bit clumsily. He was perhaps trying to make sure that you understood that the cancer is incurable. Are you sure he didn't say 'it might not make Mike live any longer'?

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

User

Posted 04 Nov 2022 at 14:39

Hi Lyne, we knew that Mike's cancer was not curable but we were told it was treatable. The Oncologist also said that the RT would not make him live longer but manage pain etc and make his life more comfortable. Ironically Mike is not in any pain at the moment and this is why we were surprised to be told that his next course of treatment would be RT.

User

Posted 11 Nov 2022 at 20:19

Hi my hubby has had pain in his finger tips and at times cant feel them. I am assuming this is one of the side affects of chemotherapy ?. Not all his fingers are affected, only a few. However it hasnt stopped him from playing tennisand badminton. Just wondered if there are any remedies out there someone could recommend please?.

User

Posted 11 Nov 2022 at 21:17

It is called peripheral neuropathy and is a common side effect of chemotherapy. Unfortunately, it tends to get worse as you go along. Talk to the chemo team - if it becomes a big problem, they may decide to reduce the dose. Also, keep an eye on his feet and make sure he wears well fitting shoes. Some people say that wearing chilled gloves during the infusions helps but I am not sure whether there is any science to prove it.

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

User

Posted 11 Nov 2022 at 21:58

Thanks Lyn for this useful information. Although next Friday will be his last chemotherapy treatment I will suggest Mike mentions it to the team.

On another question is it normal procedure for Mike to have RT treatment even though he is not having n pain at the moment?? The Oncologist recommended it as he felt it would help with pain. Mike is quite apprehensive about it and wonders if it is absolutely necessary. I am confused.

User

Posted 16 Nov 2022 at 16:14

Hi my husband has to commence radiotherapy treatment after completion of his 6 weekly chemotherapy treatment this week. The RT will be weekly for 6 weeks. The preparation for this treatment is quite inensive compared to the chemotherapy and I know hubby is more apprehensive about any after effects of RT. Will it affect his energy levels at all. Any feedbacck would be greatly appreciated. Many thanks. Maud.

User

Posted 17 Nov 2022 at 07:12

I hope it goes well for Mike Maud. I read the RT can have few side effects so maybe less to worry about than the Chemotherapy in a way.

Best wishes

Michael

User

Posted 18 Nov 2022 at 13:22

Thanks Michael, for your support. Mike had his last chemotherapy session this morning and while his PSA and Alkaline Phosphatase results are normal, his serum bilirubin was slightly up to 23. I am not sure if this is worrying as it is related to the liver?. Anyway hubby is not conerned so I will go with his positsive outlook.

Maud

User

Posted 21 Feb 2023 at 18:19

Hi All, I havent posted an update on hubby Mike for a while so thought I should do this now. Mike completed his 6 weekly RT sessioins last week. I have to say he tolerated the chemotherapy sessions a lot better than the RT. So he is pleased that these sessions are completed. It appears that he wont be seen by the Oncologist for 3 months when he will also have a PSA test done a week psrior to seeing the Oncologist. This long wait did worry us to begin with, however I was told that this is normal. I am not sure why the 3 month wait though?

Mike is slowly getting his taste back which is good and he has put on some weight and looks a lot better now. He continues to play tennis and badminton three times a week which is great. So at the moment we are just taking it easy and keep all fingers crossed for a good outcome when we next see the Oncologist. Maud.

User

Posted 22 Feb 2023 at 10:55

Thanks for the update. Still playing tennis etc. Is great news. Cancer and it's treatments are things we would rather not go through, but if at least tolerable that is good.

The three month wait is normal, there is no point in testing until everything has settled down post treatment.

Dave

User

Posted 22 Feb 2023 at 11:45

Thanks for your response Dave, it is reassuring to know that the 3 month wait is normal. Maud.

User

Posted 10 Jul 2023 at 18:08

Hi All

It's been a while since my last post, mainly this was due to having some of my own personal issues. Howeer things are sorting themelves out for me Mike ( husband) is doing well so far, his past PSA and Alkaline Phosphatase was well within the normal range. Of course when the time comes for him to have his 3 monthly PSA test I know I will be quite anxious. Mike continues to play tennis and badminton which is due to his mental strength and resilience. He refuses to let his condition take control of his sporting activities.

We had a lovely week in Orkney and I know Mike wanted to go there for a long time, I am so pleased we managed to do this. Sending positive vibes to all on the forum.

Warmest wishes

Maud.xx

User

Posted 15 Jul 2023 at 16:44

Hi there, we are planning to go on a week's holiday in October to Cypress. Mike needs to get travel insurance and is having problems because of his diagnosis of advanced ptostate cancer. He has mentioned that he has completed his chemotherapy and radiotherapy sessions and is very active. Can anyone recommend an insurance company please with reasonable charge for the insurance.

Kindest Regards

Maud

User

Posted 15 Jul 2023 at 18:35

Hi Maud,

I've used Staysure Insurance, but I haven't had a diagnosis of advanced prostate cancer, nor have I had chemo, so my experience may not be relevant. I know that others have used Staysure, as well as one called Puffin. You could try those.

Best wishes,

JedSee.

User

Posted 15 Jul 2023 at 20:03

Try going with an insurance provider that can allow you to exclude previous conditions (on the basis that nothing is going to happen to Mike while you are in Cyprus for a week which would cause you to make a claim). For many years, while my wife was being monitored after treatment for bladder cancer, myself now with prostate cancer and my wife having recently been diagnosed with early-state Alzheimer's we've had annual travel insurance through M&S with all medical conditions excluded. The cost is around £150 and we are both in our mid to late Seventies but very active! Whatever might happen, the insurance will still cover non-related accidents and baggage loss etc.

User

Posted 15 Jul 2023 at 21:35

Hi Maud - husband has also had chemo and radiotherapy and we have annual insurance from Worldwide. Make sure when booking it that you say your husband has ‘incurable’ cancer rather than ‘terminal’ cancer as it makes a huge difference!

User

Posted 15 Jul 2023 at 22:15

Thanks for this Skye, I have tried Worldwide insurance online for Mike and am not having luck at all. Trying to complete the online forms is not easy as some of the questions around treatment are quite misleading. Maybe I should contact the company via phone?.

User

Posted 15 Jul 2023 at 23:58

Also try Insurewith - generally speaking, you do better with a company where you can talk through the medical history rather than filling in an online form. And as stated above, be clear that your husband is incurable but very definitely not terminal.

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

User

Posted 16 Jul 2023 at 00:59

Hi - yes we did it by phone. Fingers crossed that’ll be more successful. Can’t remember the exact amount but the insurance isn’t extortionate (also covers our two children) and this is the third year we’ve had it.

User

Posted 19 Jul 2023 at 12:23

Thank you to those who responded and gave me some really useful tips on where to go for travel insurance for Mike. Having discussed the various travel insurance agencies recommeded with Mike, he registered with UK Global Health Insurance which provides free care although the small print does say the card may not cover the full cost of treatment abroad. My husband is very stubborn and is happy to take the risk, while I am not!

I will still perserve to get him a valid travel insurance. In the meantime thank you all for your support .

Best Wishes

Maud.x

User

Posted 21 Jul 2023 at 12:13

Hi there, I got a quote from Insurewith for 1,729.79 for Mike and myself to Cypress for 7 days. The cost of this insurance is nearly the cost of the holiday. Mike certainly doesnt feel he can go with this. I would like to know if anyone thinks this is either too expensive or indeed reasonable.

Mike is still keen to use the UK Global Health Insurance card as it states he will be covered for hospital treatment free of charge, however will not be covered for repatriation to the UK.

I would welcome any further thoughts on this please.

Many thanks

Best Wihses

Maud

User

Posted 21 Jul 2023 at 14:19

That seems expensive but I assume also takes into account his age and any other medical conditions, the expense can't all be down to the prostate cancer. The GHI card will cover emergency treatment but nothing else - you would have to pay up front for any drugs, ambulance fees, inpatient costs, etc. The risk in going without travel insurance is that you have no cover for flight cancellations, travel problems, having to cancel beforehand due to ill health, and so on. Have you asked for a quote to exclude the prostate cancer?

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

User

Posted 21 Jul 2023 at 14:26

Hi Lyn, the only medical condition Mike has is prostate cancer. He is 81 years old, when asked if the cancer has spread to other parts of the body I was honest and said yes. However in all the other questions raised about his physical health, he is not taking any pain medication, is continuing with normal physical sporting activities etc. That is why I am surprised at the cost. Also I tried 3 other companies and they wont insure him.

User

Posted 22 Jul 2023 at 11:19

So just tried to insure for myself via Saga, I was told that as Mike who is travelling with me has a medical condition, I will not be covered if I have to cancel the holiday if something happened to Mike. Has anyone experience this please?.

User

Posted 22 Jul 2023 at 13:41

Yes that is normal practice. You are a risk to the insurer because you are travelling with someone who is a risk. My dad has a new lady friend- they live in different cities but go on cruises together - the lady has to pay extra to be covered for Dad's medical conditions.

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

User

Posted 22 Jul 2023 at 13:41

It is much harder to get insurance over the age of 80.

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

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