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Newly diagnosed dad - what can I do to help?

User
Posted 24 August 2016 10:14:13(UTC)

Hi All,

My dad has very recently been diagnosed with advanced prostate cancer that has spread to his bones.  He has a gleason score of 9 (5+4), its an aggressive cancer and fairly widespread but the doctors feel confident they can keep it under some kind of control.  My dad is normally fit and healthy, is fairly active (walks a lot) and doesn't seem to have any pain at the moment.

He has had his first hormone therapy injection (I'm not sure what kind as this happened before he told me about it) and we start chemo today (Docetaxle).  Chemo is every 3 weeks for 10 cycles, which sounds like a hefty amount to me.  Is there anything I can do to make this easier or more bearable for him?  What did other people find was helpful?

This has all come as a massive shock but I'm trying to be as practical as I can about it and find out as much as possible so that I can be in the best position to help him.  My dad has let me come to his appointments with him which is a relief as getting information out of him is hopeless! The consultant has told us to be positive about the prognosis and count in years rather than in months, but I'd really like some real life experiences; with the cancer as aggressive and widespread as it is, it doesn't feel like we have a great starting point, how many years do we realistically have?  I know everyone reacts differently but it would be good to have a notion of what lies ahead. (no horror stories please)

My dad lives on his own so I'm being there as much as I can but I don't want to crowd him and make him feel like an invalid.  I don't live all that close so I can't just "pop in" and I don't trust that he'll call me if he's not feeling great - he comes from the generation of "don't complain, just get on with it".  Any advise/experience on how to judge this?  When should I be there and when should I leave him be?!

Sorry for all the questions, I'm just feeling like a very useless daughter at the moment.

Jxx

 

User
Posted 24 August 2016 10:42:25(UTC)

Do you know which bone groups it has spread to? That makes a bit of a difference to how much you crowd him or put rules in place for when he must tell you about any problems.

Also, I may have missed it but how old is he?

We have members here that have done 10 years and more with a late diagnosis and spread already to the bones. We have also had members for whom the hormone treatments never last very long who have lived maybe a couple of years. If you want good news stories, search for members like Devonmaid whose husband has done brilliantly on a really old fashioned hormone, Irun who has run extreme marathons since diagnosis, Si_ness who is our walking miracle, Alathays who out-lived all imaginable predictions by combining treatments and opting for every trial offered to him ... there are plenty of examples of men doing well and continuing to live life to the full long after their diagnosis. But do not allow yourself to be lulled into a false sense of security - for every great news story, there are also those that are not so great. It will be hard to tell which group your dad is in until you have a few months of hormone treamtent and PSA tests to measure.

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


User
Posted 24 August 2016 10:59:46(UTC)
Hi J

Sorry about your Dad and equally sorry for you as cancer is a strain on everyone associated with the person who has it so it's ok to have the same emotions ( from a different perspective) as your Dad has.

I was diagnosed 21 months ago, then aged 49' Gleason 9 T4n1m1a spread to my lymphs. Like your dad I was put on hormone treatment and then docetaxl (I only had 6 doses as my onco said no evidence that 10 was better so I would ask the onco next time you see him/her). Early chemo is a new thought, research now shows that chemo within 3 months of diagnosis of advanced prostate cancer gives on average an EXTRA year than before so it's great your dad is getting that.

After the initial emotion of "I have got effectively terminal cancer" I just got on with it. Chemo was ok, I felt a bit sick after the first and they said just take the anti sick pills for 6 days rather than 3. I did this for every session thereafter and never felt sick again. Some people say suck frozen pineapple cubes to preserve taste buds, I did this the first time but it was hassle and whilst my taste buds did dull a bit for a couple of months they came back later just as before.

I guess at this stage it is worth saying what chemo does as it was never explained to me but once I knew the below it all made sense. So in lay mans terms chemo damages fast growing things like cancer, but it also damages other fast growing things too so the things that your dad may also get are , damaged taste buds, hair loss, finger and lesser toe nail weakness, numb soles of feet and fingers, cracking skin around finger nails, nose bleeds (I used to wake up every morning with dried blood in my jose but never had a nose bleed as such), a black tongue (this only happened once on day 3 after the first chemo, it went normal again after about 7 days and remained so for the rest of treatment. All the above were manageable and slightly annoying at worst, they all went back to normal apart from numb feet which I still have but mildly.

Your dad will also have a low immune system however that does not mean he needs to be a recluse but just avoid known bacteria things like anyone with chicken pox, anyone with a cold, swimming pools. I was only recently told that it is possible that all the immune system that we build up over years could be damaged so I had booster jabs for things like polio, tetanus etc. I was also told I could get chicken pox again so make a note for after chemo to raise boosters with his GP in say 6 months time.

My first chemo was too high a dose (they want to be as high as possible without killing you!) so before my second session I was given some self administered injections to stimulate my bone marrow. After the second one I had a bad reaction and my temperature soared. I ended up in a&e in so much pain and on antibiotics as I reacted badly to the jabs so thereafter I had a lower dose and was ok for the rest of the treatments.

I used to run a bit and decided on the day after my first chemo that I would carry on. I ran 2 marathons on week 13 and 15 of chemo which goes to show that a lot of what one does is in the mind as it would have been so easy to stay in bed for the duration of chemo.

I was given 6 weeks of radiotherapy at the end of chemo on my prostate as again my onco said there was some evidence that zapping the moth ship of PSA even once it had spread can reduce the rate of growth thereafter. The radiotherapy was a breeze but 6 months later I had bleeding bowels from collateral damage called radiation proctitis . Not painful but a bit worrying at first. I was given suppositories to sort but they didn't work so I stopped taking them and resigned myself that I would just have this forever.

As for the outcome, well my PSA was 342 on diagnosis , after chemo and then radiotherapy it went down to 0.5 so the stuff works. Later my PSA rose to 4 quite quickly and they started me on Abirateone in Jan this year, that is doing a great job and my PSA is now 0.3

I changed my diet quite a lot, at home I am effectively a vegan who eats fish it no dairy, meat or eggs but when I eat out I do what I want as I doubt 2 meals a week involving dairy or meat will be what finishes me off!

I also take some supplements, pomi-t, turmeric plus a baby asprin and vitamin d. My onco said that the last two should be a must for every human regardless of cancer. The vitamin d between September and April I've when the sun is not high enough and we are not outside enough to get the benefit. I also drink green tea.

More recently I have been having acupuncture to reduce the hot flushes that the hormone treatment gives me and also started on some mysterious powder that is Chinese medicine plus powdered reishi mushrooms. The guy I see is an expert in Chinese medicine for cancer patients. I told him all my issues and he got the powder made up for me. All I can say is that within a week my proctitis stopped and I feel better than ever. Most people on this site have a view as to what may work, some more extreme than others. I can't guarantee any of the above does anything but I feel better about doing something and in the last 21 months I have not had a cold or been ill in any way apart from what I have said above. I have also run some massive races accross the Sahara and around the uk.

As for prognosis, I was told 2 to 10 years but think 3 to 4. Statistically only 30% of men survive 5 years after diagnosis of advanced prostate cancer HOWEVER all those stats are based on historic data is before early chemo, before widespread use of Abirateone etc so whilst I may be unlucky and not beat the average I live every day to the best of my ability and will cross whatever bridges I need to if I need to, don't get me wrong, I know the bridges are there but who knows maybe I will find another way.

I hope the above gives you some comfort that it's not all doom and gloom, you must look after yourself as you are key to supporting dad even by phone, I promise you the best thing you can do for dad is call him every day, don't fuss over his situation but tell him what you are doing and say you love him now and again as that kind of stuff means more to me (and I therefor guess to him) than ever, I want to know my kids are heading in the right direction although mine are younger at 11, 16 and 18.

Keep posting, ask questions of us and of the onco as we all welcome the experience of various doctors, best wishes and good luck for your dad , Kev
Dream like you have forever, live like you only have today
Avatar is northern lights whilst running in Iceland sept 2017
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User
Posted 24 August 2016 14:10:18(UTC)

Hello JSR and welcome.

Great advice from Lyn and Irun.

You'll probably be hearing from others with their stories. I can't share ours as it's different to your dad's so not relevant.

As Irun say, just be there for him.

Look at the publications section treatment advice side effects of the chemo etc (although I'm sure the hospital will have supplied that info)

Many men on here swear by leaving out dairy and taking on things like Irun says, plus extra Turmeric and tomatoes etc. Do they work? Maybe. Will they make the situation worse, unlikely and at least you and your dad would feel that you are in control of something.

Best Wishes

Sandra
********

We can't control the winds - but we can adjust our sails
User
Posted 27 August 2016 12:19:05(UTC)
Hi, JSR,

As you don't live too close, and he's a bit on the 'stiff upper lip' spectrum, it might be a good idea to set up regular visits, rather than wait until there's a 'need' - that way, you can keep in touch as he goes along, rather than having to interrogate him when there's a problem.

The key is to not overstretch yourself; think about the distance and your other commitments, so that it's a routine that can be kept to comfortably. That will also give him something solid to rely on.

If he doesn't sign on here, it might be worth phoning him a couple of days before each visit, to see if he has any questions, so that you can ask here.
-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
 
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