Incurable prostate cancer that has spread to the bones.

Hi Loumar, I feel your pain.We take one day at a time .Counseling can be arranged via Macmillan. Holistic therapies can also be arranged which really helped my husband .Prostate cancer uk and Macmillan  also give good advice. It really helps stating how you feel on this site as many are going through the same thing. Depending on where you live, local hospices are very good with pain management if your husband could be referred by his GP.It is so hard seeing the one you love going through this. I find this chat line invaluable, especially when I am feeling that low, crying over the slightest thing, it is so hard trying to be positive all of the time,but the good days come too when you can have a laugh about things with a warped sense of humour on this cancer journey! Only those going through this fully understand. I am aware it is difficult getting face to face consultations but pain management is crucial in helping your husband.Try telephoning his consultants secretary for an urgent appt .Hope this helps.

I feel your pain so much… my husband also diagnosed in October 21, stage 4 bone and lung mets.  Try Macmillan… for support  they are wonderful!!

much love to you .. 

Louli

Hello loumar, I understand how hard it is and I'm sorry you and your husband are going through this. I have had the worst 12 months of my life with the diagnosis and treatments but I am now in a much better place, well I will be when I'm fully recovered from this covid haha. Have a look at my profile, I know what your husband is going through, I am younger than him but I can only advise he doesn't sit around too long as the fatigue will overwhelm him. Obviously it is a balance, when tired rest and I know it sounds counter intuitive but the more active I am the less fatigued I get. I know the pain can be excruciating so that needs to be dealt with first. There is hope for him with these new drugs that his condition can be managed. If he needs a chat I'm happy to talk. Take care.

Hi Jan

my husband was diagnosed with advanced prostate cancer Gleason 10 in November 2018.  Prostap held things initially but then his psa rose again by the beginning of 2019. With the pandemic he started enzalutamide which was a great alternative to chemo at that time.  This was effective for just over a year.  In oct 2021 he began the chemo psa 74.  Post round 5 it is 55 but stable. Today he has his 6th & they want him to continue up to 10.  Initially he had approx 5 good days before next treatment but now it’s a few hours of the day. He wants to continue but there’s not great quality at the moment.  I am 60 & he is almost 68. I recently retired to be there for him.  We find not be able to plan anything v difficult firstly because we don’t know how exhausted he will be each day or when. Family & friends are amazing & understand  our last minute cancellations but it can feel a lonely place at times. Our son gets married in Greece in September & we are praying we can get there.  Chemo has really taken the stuffing out of him & he gets so frustrated. Not sure how much more chemo he can tolerate but as said before- what is the alternative. I just hope his body can recover somewhat from the effects of chemo. 
I’ve only just found your & others messages but it has helped to hear about others in similar situations & experiences. 
Im trying to hang onto the stability of last 3 months on chemo psa results rather than the numbers. Ct scan next so hoping no further spread there. 
wishing everyone the best

Julie 

Hello Julie

I know all to well of having treatment after treatment, still have no choice but to carry on with them, like you have mentioned what’s the alternative. Five and a half years I’m getting slower even though I do my best excersize eating etc.

Ten rounds of chemo knocks the stuffing out of the best of us, congratulations for him to keep this up, when I had it the first three or should I say four, ( I caught sepsis after the third ) the last two although still giving you sweats and fatigue etc, was easier to handle, one of the worst thing was lack of taste as I enjoyed my Christmas dinner but it had no taste, but that came back thank goodness. 
My wife thirteen years my junior at 57 left her work to be my carer, so we both know how you feel, in my wife’s case she is petrified, at the thought of me falling or worse, so I know how stressful you must feel, seeing what is going on, being helpless in most cases breaks my wife’s heart, so I can imagine how you feel with your husband.

Scans are a great thing, with me I want to know to everything, plus backup plans for when one thing stops working there’s something else. Your both doing great keep positive.

Stay safe

Joe

Dear Joe

thank you for your lovely response & understanding. We have you both with us so am truly grateful for the growing treatments on offer. It is an honour to be carers despite the inevitable stress & worry.  
keep well

julie 

Hi Joe, 

we have a lot in common as I am also 13yrs my husbands junior and worry for him so terribly just like your wife. 

 He is a fit and active 71yr old and I’m 58.
recently I’ve been a bit concerned about our oncologist advising against regular  scans and my husband hasn’t been offered chemo or radiotherapy like others at stage 4. I’m realistic to know that with bone and lung mets at diagnosis in October 21 that the Prostap and Zytiga are helping but maybe temporarily. His PSA is 0.1 and holding at that so all good for now. I think area to area they treat people differently. We are going to ask next week about cyberknife for the lungs as these lesions are very small. 1x 8mm approx in each lung.

We know we need to pay for it but if it’s likely to help my husband feels it’s worth it. I really hope so.

kind regards,

Louli

Hi Louli

I agree with how they deal with different situations, the PSA holding like that can last for a fair amount of time, mine went down to 0.07 at one stage, kept that way for a few years before rising to 6.1 now.

If your like my wife, who I love dearly, worries about everything. What will happen, how will she go forward, lots of things including seeing me in later stages, it will break her heart, I cook and do the maintenance around the house as that’s what I used to do, plus other things as I’m a bit of a big kid always trying to make her laugh as we don’t get out much, I don’t drive it’s buses and trains or walk.

Your both doing well, keep being positive, the team you have are doing their best so onwards and upwards for your other half, also you stop worrying there’s lots of time to enjoy yourselves.

Stay safe

Joe

Hi everyone, I am new on this chat site. My husband was diagnosed with prostate cancer following a diagnosis of bone secondaries 2 years ago (begining of first lock down).He is having the 12 weekly injections of Prostrap. Then needed radiotherapy as the bone cancer in his spine had swelled and was pressing on spinal Cord. This was followed by chemotherapy 10 cycles. Was reasonably well with this and PSA came down to 0.4 from 96. He now has a PSA of 0.7 but complaining of stiffness in his neck but not pain. Does anyone know if the PSA is normal could you still get a cancer spread to more bones or other organs? He is reasonably well otherwise but no where near as fit as he was prior to diagnosis.

Hi Travelgirl

Glad to have you here, his treatment was normal for what you have mentioned, 0.7 is still excellent which means the PC is barely detected. I get pains here there and everywhere, it seems to move from one place to another just to annoy me, in my opinion and I’m not a doctor it’s just one of those things, I take Alca D3 calcium tablets given by the doctor twice daily, helps strengthen the bones and any help is a plus for us, I also take a vitamin called Pomi-T it’s a combination of pomegranate, broccoli, green tea and turmeric all excellent for keeping PSA stable, google it have a look.

Stay safe

Joe