Hi

Good to hear everything is going ok, when I was on chemo I asked about flu vaccine when I was on chemo, they said it would be fine, but I never bothered, actually I declined on taking any type of medication apart from allopurinol for my gout, as I was a bit frightened of the Meds interfering with the chemotherapy, I know a little different now.

Always here to help if I can.

take care hope all goes well on the next session

keep positive Lisa there's a long way to go

joe

Hello both

Lovely to hear from you, so pleased everything seems to be ticking along nicely.  I've thought about the flu jab but heard the chemo will just kill the antibodies anyway.  I'll ask again for my hubster when we're back at the hospital on Friday,.

I had a light bulb moment the other day - dairy products promote mucus.  I have been trying to get calories into S by adding cream, milk etc, etc to everything.  One of the symptoms of his cancer is excess mucus - he eats a few mouthfuls and then has horrible mucus reflux.  Well I switched to soya milk, coconut cream and rice water and the difference was immediate..... of course it could also be coinciding with the chemo working and the tumour shrinking but whatever, it's a huge relief.

Before we started chemo I put S on a course of vitamin supplements but was told to stop because we think they were interfering with this bilirubin - it's weird, you think you're helping, but you're actually not.  Never mind.  So to try and get loads of goodness into him I've but a nutri bullet and mixing up all kinds of fruit smoothies with kale added.  Sounds weird but you don't taste the kale and I know he'sgetting some nourishment, rather than just calories.

Anyway, that's my news.  It sounds like we're all in for a lovely weekend weather wise so we're going to plant a spring bulb garden to inspire us.

Take care both

Rx

Hi 

I googled the socks off what supplements were good and bad to take, have a look at this one pomi-t and b12 the pomi-t helps reduce and keep PSA down the other is for blood have a look I took pomi-t from the start told the urologist who knew about it.

Good bulb planting 

joe

Hello Joe,

Thanks for posting the information about Pomi-T. I hope that you do not mind my joining in this topic, but I wanted to ‘flag up’ that you did the right thing in letting your urologist know that you are taking the supplement Pomi-T.  We always advise people who are thinking of taking any nutritional supplements or herbal medicines to let their medical team know,  as some supplements can interact with conventional medicines.

There has been a small study which looked at Pomi-T in men with prostate cancer.  But it is generally agreed that more research is needed before we can know if it is a useful treatment for men with prostate cancer. So at the moment it is probably not a good idea use Pomi-T as a substitute for conventional treatment.  So if any men out there are thinking of taking it or other supplements this a gentle reminder that you need to do as Joe did and discuss it with your own medical team.

All the best,

Jean

Hello Jean

Anyone can join our chatsthe more the merry, I did a lot of research as regards supplements, before coming up with these two and yes I know all about the research done in the states as regards the effectiveness of this supplement. It's like all supplements they end with " more research needs to be done"

Its like the Stampede trial I am on, they have done the tests and are still testing, now they put the results foreward but still need to carry out more tests to mixing different drugs and methods to see which will help us the most, until we have tried it and flagged up any ups or downs then they are in as much of the dark as we are. 

As you know different people react differently to medication in some great in others not so, I am no doctor or nurse if I ever tell people about medication that has helped me I always add see the doctor or urologist.

if you know anything about my case I had a PSA of 893 in June last year after tests Gleason 9/10 and stage T4b with mets in my shoulder and ribs. After changing my life style in the way I ate and drank with a little excersise I now have a PSA of 0.04 I've had the chemotherapy, Radiotherpy, and I am on three monthly hormone injections, I am a person with a positive attitude ( although the hormones have a say ) and know at some time my condition will deteriorate and then other Meds will take me on another journey. 

But while I can, I will assist, give advice, help in any way I can to others in a simuler situation sorry for going on a bit, but others need to know there's people out there who want to help them, it's a lonely place sometimes, but while I have life I have hope.

Anytime you want to join in we want all the help possible, it's nice to have a nurse join our conversations.

Take care

Joe

Good morning folks just a small update on my FIL, he won't be having chemo on Friday as planned, his bloods are back & they're low, I presume the white cells are low. He has a head cold also has seen GP who said it is viral. Hospital know about head cold & said keep an eye on temp, temp checked twice a day and has been 36. Giving him a break until next week. Hope everyone is keeping well. Keep in touch

lisa 

Hello Joe, so FIL had his app at hospital today I was working so I didn't get & im so annoyed with myself for not being there. Apparently his blood is very very low, the consultant told him you could die they're dangerously low. I gave his number for me to call him as my FIL isn't great at remembering new information but basically he is talking about a new trial called TOPARP. Have you heard of this? I presume he isn't going to carry on much longer with chemo when he's sending home information of a new trial already. I have to say I am worried. I'll give him a call tomorrow and update you then.

Take Care

Hello Lisa

First, you cannot be every where, so do not blame yourself.

Low blood counts happen all the time, they will not proceed with this medication, while it affects him to this degree, his well being is paramount, I hope he realises having such a low blood count he's subject to any infection he needs to be careful.

i have read about this drug it's very new to men only two years in trials, it was used on women fairly successfully, and now is trialed on men, from what I have read it appears to have good reports, not that familiar with it yet, I will be doing a lot more research as in my condition I am always looking at anything new for us with metistic incurable PC.

My only news is I've seemed to have developed arthritis in my fingers, waiting for the reports of X-rays I ve had as to what happens next.

Hope everything goes well for your FIL with the new medication, like I say not sure about this new method but I hope it sorts things out.

Take care

Joe

Hi Joe, sorry about the late reply it's been a hectic few weeks. How did you get on with your X-rays? Arthritis is a painful thing, do you take anything for it to help with the pain when it gets bad?

abit of bad news on our side Joe, my FIN isn't getting anymore chemo, doctors say it was so dangerous, and because he was on the low doseage (60ml) there was no room to reduce it. The next option and we are told his final option now is another tablet which is used as a "blocker" it begins with A but I've forgotten the name of it now. We're gutted to say the least, but the consultant said he thinks it's the right decision to stop chemo as the drop in white blood cells was very dangerous & he might not have got threw if he were to catch an infection. He was doing so well on the chemo too we were so proud of him. When you're told there's no more they can do to treat the cancer after this last attempt he really hits home, does that make sense? Almost 4 years we've battled this and to hear that our main aim will be to keep him comfortable not treat the cancer now is shattering to us all. Tough months ago Joe I doubt. I've never been threw anything like this before and I don't know what to say 

take care of yourself Joe

Lisa