Chemo and hormone

Hello Merrivale.

Right, time to take deep breaths and try and relax.

So, the news isn't good, but it isn't all bad either. Thank goodness the scans show no bone mets and the chemo and hormones will help with  reducing the spread.

There are many on here with PSA much much higher than your husband's with Gleason a lot higher too, so please try not to despair.

I don't have any experience of either chemo or hormone as my husband had a different treatment but I am sure that somebody will advise you soon.

Although "what will be will be will be" isn't exactly positive your other half isn't in despair either so that is good, and it isn't unusual for our husband's to bury their heads. Mine has never read anything about his prostate cancer, I've done it all !!
That's men for you.

On this site, under the publications section, there is something called "The Toolkit"
It is a mine of information on prostate cancer, the treatments, the emotional effects, erectile disfunction etc.
You can order it direct or ring the free number and ask for one of the nurses and order it from them.

If you want clarification on anything then either ask the nurses or come back to us.

There are so many people on here with differing experiences as we each deal with our own version of this horrible disease, that somebody is bound to be able to advise you.

What you are undergoing now is where we have all been, so we do understand exactly how both you and he feels.

You still have a lot to look forward to, please don't write yourselves off too soon.

Life will definitely be different, and there may be some rocky patches on the way as the chemo and hormones take effect but you'll be there for him I'm sure.

Keep that chin up and wait for another member to come along with what to expect from the treatment he has been offered.

In the meantime
Best Wishes to both of you.

Sandra

Edited by member 12 Jan 2016 at 19:49  | Reason: Not specified

Hi merrivale
My gleason score was 4/5
Have spread to bones
Am on 3month zoladex injections
About to finish my chemo on thursday
Latest PSA results are 0.03
Started at 20 when diagnosed

Have a look on the home page info on early chemo very informative

Regards
Nidge

Hi there
Can you just clarify is it definitely chemotherapy or radiotherapy. Radiotherapy can be used in these circumstances to zap the prostate and pelvic area to include the nodes nearby. This treatment offers the chance of cure.

If it is definitely chemo therapy you need to be aware that Prostate cancer cannot be cured by Chemotherapy but it will knock it back. If it has only spread to nearby nodes it would be worth enquiring further about the treatment options.

If it is radiotherapy he will usually have this 3-6 months after being on hormone therapy

Bri

Edited by member 12 Jan 2016 at 20:48  | Reason: Not specified

He had a course of radiotherapy, then hormone therapy.

He's fit and well, now age 75.

Take a deep breath. And don't look anywhere else on the Internet for answers. It doesn't help. There's always soneone here.

Louise

Hi Merrivale,

A friend of mine described a cancer diagnosis as like being in a tumble drier, sometimes spinning round so quickly, other times being relatively still. You have to get to know a whole different vocabulary and life, which as you say, included hope, dreams and plans suddenly seems all over the place. The great thing is that you have a whole community of people here who know what it is like and will support you when things seem scary and uncertain. PCa is a very individual disease, each man seems to respond differently to treatments depending on the receptivity of the disease to them. I guess your husband is being offered HT and chemo as latest research suggests this is the most effective route for men diagnosed with advanced disease at presentation. As well as downloading the Toolkit, PCUK have a helpline staffed by specialist nurses who are a good resource to talk to. In the beginning it is difficult to avoid information overload, but it is good to be informed. We have many men on the forum surviving a long time, even with advanced disease and there are developments in treatment coming along at a much faster pace than a decade ago. I send you my best wishes,

Fiona.

When John had his cruciate op a few years ago, he asked the surgeon whether he would be able to tap dance afterwards. The surgeon assured him that he would and J replied 'fantastic because I can't now'

Hi Debby,

I am having six cycles of docetacel, three week cycles and three month HT injections.
Work wise i had decided to take wed and fri's off but it really just turned out to be fri. Not because I really had too but it did give me a rest and long weekend to feel physically and mental fit. My work isn't really all that physical but fair bit of driving and yo and down ladders.
Kev is right that after the initial shock it's best to keep active and positive. Also mentally is can be quite wearing so we have always been planning things and doing little projects. We're keeping kitchen and bathroom companies busy at moment!!
Steven

Hi Debby
I'm have been on the Stampede trial now for just over 12 months. As you say there are 3 groups one-off which would be randomly selected for your OH. I was randomised to Group J and started with Abiraterone and Enzalutamide in addition to the HT (prostap). I did have some bowel problems with the Abiraterone and stopped taking it after 4/5 months but continue with the enza.
On diagnosis I was T3a, Gleason 7. N0M1 and a psa of 235.
My last psa reading a week ago was .07 and I'm feeling fine apart from minor side effects of hot flushes and fatigue. I too do some running and last year did a few 10K's ans 2 half marathons.
I'm hoping to do at least the same this year.
I'm 70 tomorrow and will never give up

I wish you and your OH all the best in your journey

Paul

hi
my chemo found it very straight forward, they warm you arm up with a little electric blanket so as to get a good vain, then insert needle followed by an anti sickness drip, they also ask a few questions to make sure they have the correct treatment
next is chemobag/drip you can feel it flowing up your arm, then its just a case and sit and wait till it empties

after got steroids and anti sickness tablets they will explain about when to take

depending on how much hair you have you can have a cap on which I am told helps stop hair loss I didn't use it as don't have much hair

lost hair mostly from the waist down, hair on my head went very fine so made shaving a lot less

treatment made my body more bloated and I put on some extra pounds 1.5 stone, also abit more fatigued as treatment progressed and restless nights so at times I slept in our spare bed

only had one really bad week where I felt sick ad very tired that was after my 6th session

prior to that was able to keep running a mile or so each day

also suffered a lot with wind, and you need to be careful re infections

had loads more hot flushs so bought a small hand fan also a thermometer as you need to keep an eye on temperature

I was given a note book with all my blood counts in and in the back you can make notes which I did for every visit

regards
nidge

Hi Debby

I've just finished the chemo and found it straight forward. The first was scariest because didn't know what happens. I was taken in for an assessment two days before just to run through it which was a lot of questions to see if I was fit for it. It was fine. Initially I was told it would thin my hair but nurse said no it would go but suggested the cold cap which I did use. It's like a beanie cap with plastic tubes that flushes freezing water around your head.

In my case I had a drip in the hand and had 20 min saleen(?) wash through, then 20 mins anti sickness, 1hr 20mins chemo then 20 min wash through again. It was no bother. The cold cap goes on at same time as first drip and remains constant throughout plus 45 mins. It keeps the chemo from the head. Very uncomfortable for first and second sessions but got used to it and agin wasn't a bother. It did work and still have all the hair. OH just keeps singing Carly Simons your so vain throughout!! But was glad I did it. To be honest the morning was like having people bring you cups of tea, chats with nurses and others, nice wee NHS lunch and catch up with reading and iPad. Not a bad morning really!

SE were not bad, lost body hair, ridges to thumb nails and got a tired towards 6th session but all very manageable. Kept working throughout treatment. Emotional wise OH said I was quieter for a few days after first few treatments and she may have been right but didn't admit it. (What's wrong - nothing I am fine. That type of thing!). As with nidge more hot flushes during day and night which I think contributed to tiredness, but again manageable. Put on a few pounds. It is was winter and Christmas.

Hopefully your OH will have a similar experience. Hope it all goes well.

Steven

it sounds as though your OH is handling the chemo well, the hair loss can be pretty random although most men seem to lose more body hair than head hair. His treatment and monitoring whilst he participates in the stampede trial should be about as good as it gets, with the added bonus that he is doing something towards helping others yet to come.

I am sure that continuing to work on the barge with your son to help him and to keep a watchful and caring eye over him will certainly take his mind off things! I bet he has some amazing stories to tell about his work and experiences over the years.

On a purely precautionary note, chemo of any kind can occasionally throw up some complications, for exapmle a temporarily compromised immune system can make him more prone to infection. Does your OH have his chemo guide with him and does he know what to do and who to contact if he gets any problems whilst he is out on the water? Im sure being on the barge he has is in a much better place than travelling to work on a train or a bus and then sitting in a stuffy office though.

If you have not already done this, it might be an idea to show the red chemo record book and the information in it to your son and to ensure it goes with them each trip so they can refer to it if necessary. In the first aid kit on the barge have a good thermometer so that your son can check your Husband's temperature if he becomes feverish or sickly. Boots sell a battery operated one which you point at arms length to the forehead and press a button to get the reading. They are accurate and reliable.

I can only imagine how difficult it is not being right there every moment of the day with your Man but I am sure that your OH has more life experiences of looking after himself than most. If he reads this over your shoulder he would probably think I was nuts for mentioning it even. My late Husband used to say I worried too much but he always knew that I meant well! I genuinely do.

My very best wishes

xx

Mo

Hi Debby
Glad all seems to be going ok.
I found it easier once decisions on treatment had been made and one could settle back down a bit. Believe me after 6 months you stop thinking about the cancer every day and get down to some normality.
I too am on the Stampede J arm with enzalutamide (as I said I dropped the abiraterone).
The frequent monitoring by the Stampede Team is great. After 15 months of static psa I'm now on 12 weekly monitoring but can ring the team anytime I have a question.
I make sure that I get a copy of my blood test results before I go into the appointment so I can ask questions and my wife always attends with me so we don't miss anything.
The other thing I'm hot on is diet and exercise both of which help (according to my onco)
I do get regular hot flushes - I've found it helps not to sit in unventilated rooms and at worst I either go outside to get fresh air or put a pack of frozen peas on my head.
Fatigue is not a problem day to day, I have worsened running up hills so I walk/jog a bit more.

Your OH should not have much to fear and you both just keep enjoying life.
Paul

good news all around for you just now ..fantastic

The hair experience on chemo is varied, some men seem to lose all their body hair but not their head hair, some lose none at all and others get a growth spurt, no explanations for that at all !

Best wishes

xx

Mo

I've just used Boots holiday insurance. You have to be very honest with your responses to questions , so have all the facts to hand. I've paid £180 for four people including myself on a two week Med cruise. I think that's excellent value. Ensure repatriation is included should something horrendous happen ( it won't ). Go for it. We are ! Making some family memories
Chris

I think it might be possible to delay the first chemo until after the wedding? It would be a shame to spoil such a special family moment