Bicalutamide

hi gemma

i took it for a month when i was first diagnosed , after 2weeks i had a zoladex injection that lasted a month .

now i'm on 3 monthly injections , is ur husband not on any hormone treatment ?

start looking at alternative ways to treat it urself ! . the joe tippens protocol is one .

how to starve cancer by jane mclelland , lots of stuff out there 

gd luck 

Thanks Anubis.

Yes he is on Prostap and has an injection every 3 months.

I just feel unsettled now chemo and radiotherapy is finished that we should be doing more.

I don't know why the doctor's don't prescribe Bicalutamide at this point.

I am looking into alternatives.

Do you make your own CBD? 

Hi Gemma

Your husband has gone down the same route as I have, except in my case it went into my bones, I took bicalutimide to start to reduce the PSA so they can give the chemo, then they wait a month and do radiotherapy, did they mention that he is to have any scans etc ? 
what stage is he, did he have a biopsy? 
My PSA went down to 0.07 at first it’s 1.7 now so takes a long time to climb back up, is he on any type of medication.

joe

Hi Joe,

Thanks for your reply.

In Nov 18 he was diagnosed as Gleason 9, found in 6 of 12 samples and 1 pelvic lymph node but with a high PSA of 167.

He doesn't have ultrasensitive PSAs so they just say under 0.1. No scans further scans planned but he did have a CT scan after chemo and his oncologist said the lymph node was more or less normal size. Now only Prostap.

Might need a TURP for frequent UTIs otherwise 6 monthly phone calls with PSA.

I think I felt better when we were being pro active with treatment, now it just feels like we're waiting and I feel like we should being doing more. So hard 

Hi Gemma,

I had my last session of chemo yesterday. Your concerns in some way reflect mine. How do you move on when treatment is holding things at bay, how do you manage to live with cancer in a way that doesn’t take over your life, so we can enjoy whatever time we have.

I feel I’m not able to celebrate end of chemo, because I know I’ll suffer effects for few weeks yet and also not being cancer free. 

Similarly my psa is under 0.1 as no more accurate available, unsure how beneficial more sensitive would be as might cause more anxiety.

It’s been a long road, prostatectomy April, chemo Sept through, feels like a train ride with no stops. Suddenly now to get used to sitting back and enjoying relative health, understanding what my new normal is, what side  effects remain from surgery, chemo and hormone therapy, lots to come to terms with. 

Its almost like being dropped by the system although glad not to be in hospital for a while.

Hope your husbands psa remains low for a long time and you can enjoy his health he currently has

J

Thanks you, I hope the same for you 

Do you go to a cancer self help group such as a Maggies Centre together?  My wife and I do and although my situation is different from yours it helps to talk to the other cancer sufferers and the professionals at Maggies.  We have a Prostate Cancer club - "The Walnut Club" meeting every Wednesday and wives, partners and carers also have an "unofficial meeting amongst themselves with coffee and cake at the same time.  We have talks from various medical professionals and also have classes you can go to on how to stay fit after cancer treatment, living with cancer, relaxation, and diet and nutrition etc. 

This is the thing with this cancer is waiting to get test/scan/PSA results all the time and then just waiting to see what happens when various treatments are completed.  It is very hard to live like this. 

Find out if there are any Prostate Cancer self help groups or a Maggies Centre in your area and go along and have a chat - it really does help,

Take care and all the best

Des

Hi Gemma

The only problem with prostap is it makes you tired and fatigued, might take a while but you will notice him a bit more like I have just said.

Like him I’am on six months but I have my bloods taken at the doctors just to keep a check on my PSA, you’ve got a while before slight rises may happen. 
If he can excersize a little each day that does help, I’am trying to get back in the gym but have to be careful, like I mentioned I have a variety of things going on, also I take Alca D you get it from the doctors, it strengthens the bone, since taking it mine have improved very slightly everything helps, I also pomi-t it helps keep the PSA down this is not guaranteed but if you read up on it you will see what I mean. 
He had a high PSA mine was 893, but I suppose when you get past a hundred their simular results, try not waiting for anything, first few years, I tried to get out go places even though I do not drive, me and my wife who’s my full time carer, loved going abroad, but the insurance is astronomical now so it’s just plodding round places we’ve not seen York Chester Lichfield etc.

On a personal note, is your husband claiming benefit, I say this as us incurables can claim it’s nothing to do with tax or anything else ask your cancer advisor about it, I only stumbled on it when we talked to the McMillan people, it can be worth up to £148 a week helps pay for taxis and special meds etc.

Take care

Joe

hi gemma 

no i dont make my own, found a local source for mine .

just shows how different we all are ! my psa was only 51 yet i had mets to my pelvic lymph nodes spots on my pelvis and rib !! 

while i had chemo i had a further spread to my spine and chest despite a psa of 0.3 !!

this was when i started taking cannabis oil and i was also put on abiraterone .

in 3 months all the bone mets had gone and a tumor in my pelvis was 5 times smaller !!

i have started the joe tippens protocol 3 months ago and just had a scan so will see what that brings ?

my oncologists words where , we cant trust a psa score in my case i have to have ct scans !!

my psa is 0.1 now and i feel great apart from hormone side effects ! 

keep positive and keep ur options open to alternative ways 

Hi Gemma,

My father has aggressive prostate cancer, diagnosed in September, PSA 34.9, Gleason 9. He is 71, . He had in October 2019 MRI & Bone Scan. Fortunately, it hadn’t spread to the bone & lymph nodes. On 13 November had surgery, results after surgery - cancer was on surgical edge, stage T3a. PSA in December was 0,94 and now in January is higher 1,2.

He will start with 33 radiotherapy treatments in four weeks.

I am so worried. I am afraid that it is very long period without any treatment. What do you think, what his results mean?

Sorry for my not so good English but I am from Belgrade, Serbia.

Thank you