Stage 4 confirmed today- bone mets in spine, ribs and hip area

[purpleblue8]

We found out today that my husband has stage 4 as his doctor suspected.

Feeling numb and terrified. We have two small children.

[Tall_Allen]

Sorry to hear that. The new triplet therapy has had great results for many men with that diagnosis:

prostatecancer.news/2021/05...

[purpleblue8 in reply to Tall_Allen]

Not sure if it is available in my country

[Tall_Allen in reply to purpleblue8]

If not, I think abiraterone is available as a low cost generic now in the UK, so you may be able to afford that part of the triplet. NHS certainly covers docetaxel+ADT.

[Tonyliv]

I was diagnosed with extensive bone mets in the uk five years ago and still have a good quality of life

Get six sessions of docetaxel straight away. Odds are you’ll have many years yet. Learn the nomenclature. Subscribe to the daily email from this site.

[lcfcpolo]

During Covid, if in England or Wales, Enzalutamide was offered as first treatment. In Scotland, Abiraterone was offered as first treatment. You can discuss these as alternatives to Docetaxel but push for the triplet if you can. If you need a second opinion The Royal Marsden do appear to offer this for approximately £500. Check the website. To be honest, some people from the UK and USA travel to Germany, Bacu, Turkey, Australia or India to pay for LU177 treatment.

Good luck and sorry that you find yourself here. Lifting weights and doing resistance band workouts is important. If you can, get a local trainer in a gym or request a physiotherapist referral from your GP.

[larry_dammit]

so sorry to hear about another warrior joining the fight for life. To early to panic , stage 4 here with about the same issues in 2016. Take a deep breath and pull your family close. Just one line that sticks in my feeble brain. As my oncologist said in the beginning. No one wants to have cancer but there has never been a better time to have it with all the new stuff coming out Dailey. 🙏🙏🙏

[PSA680]

Hi purpleblue8 - my heart goes out to you & your husband- it’s a horrible and life changing diagnosis. I’m in the uk -on my diagnosis in March 2020 I had psa of 680 and extensive bone mets (the tumour in my left femur was so bad I required a pin to reinforce the bone). I’m on uk nhs standard of care which is (due to pandemic) monthly Firmagon injections and Enzalutamide tablets. It may once again now be Firmagon and Docitexel. My psa went down to 0.05 and 🙏🙏🙏 it has stayed at this level since. The drugs do have side effects & I can’t do what I used to but I have a good Quality of Life all things considered. The first few months after diagnosis is the worst - slowly you get your head around your new normal. I wish you all the luck in the world. Darren

[Benkaymel in reply to PSA680]

I recently started treatment in the UK (Sussex, England) and the SOC is still ADT (Prostap) + Enzalutamide although I believe chemo (Docetaxel) is available as an alternative to Enza.

[Lshanks07]

purpleblue8,

I am so very sorry to hear of your husbands recent diagnosis. I was there - few months ago. We have 3 children and 2 school age.

I remember the feeling of not being able to breathe. This forum single handedly changed my perception and grasp on this fight.

Sean just finished his last round of Docetaxel chemo (6 treatments). Thanks to to the advice of this forum and Tall Allen, We had to push a little, but we did start triplet therapy.

We will will repeat psma pet scan in December to see how the chemo and treatment is working.

Right now, the cancer isn’t curable, but if you stick around this forum very long, you’ll see there can be many years of good quality of life left!!

[NEHOG]

Is this where I say "Don't Panic!"?

I was diagnosed stage IV some years ago. I'm still going strong, and not giving up--but I'm not sure I'll agree to another chemo as the last two were not effective. Virtually no symptoms, and other than stuff that could be age related, I'm doing OK.

Stage IV is not a panic point. Much depends on each patient's specifics.

[Benkaymel in reply to NEHOG]

Hi NEHOG, since chemo was not effective, what treatment(s) have you had that is/were effective? (There's nothing in your Bio). Thx

[NEHOG in reply to Benkaymel]

Looking at LU-177 probably.

[EdBar]

Sorry to hear that, I was given the same diagnosis in 2014, I’m still here and doing well. You can click on my profile to see what I’ve done.

It’s really important to get with an oncologist who specializes in prostate cancer, even if travel is involved. You can have an out of town specialist who coordinates treatment and testing with your in town oncologist, that’s a combination that has worked for me. There are a lot of treatments available, learn all you can and be your own advocate. And don’t discount the power of prayer.

Ed

[NecessarilySo]

I learned about stage 4 in 2012, ten years ago. Lately I no longer have aPC, i only have medicinal side effects. (At least that's a better way to think of it.)

[Hidden]

Boy, purpleblue8 . I am sorrry . Each one of us stage 4’s knows those feelings all too well . Until you get him on the other side of that it’s stressful indeed. The not knowing is the worst . You’ll find out more very soon about pc and it’s effects . I was 53 and felt young to the party . He will get what he needs to survive with this internal friend of ours . No cure but some have survived for decades . Stay positive all . Much love to you ,him and the kids . Super strong reasons for him to live.. love is the best medicine imho . Ask questions ? One or more of us has been there . Keep in your thoughts that he will do better than . any dismal stats .. Take care ! 🙏❤️

[FormulaRob]

I’m sorry you are dealing with this news. I know the feeling .. the thought of losing either of my parents kills me inside.. so hearing the news that my father will have to battle cancer is just devastating and worrying.

BUT this forum will really help you .. I mean you hear A LOT of great things from people that had a horrible prognosis and yet here they are 6,7 years later and still going strong with no signs of slowing down. Living life to the fullest , being active etc .. This made me realize that no matter what the prognosis is with prostate cancer .. a lot people go much longer than ever expected. Stage 4 is general and so many people living well over 10 years with it. It’s not the death sentence like you may initially think when first hearing this news. This won’t make you feel 100% better of course as this is some BS we gotta deal with but it’s a start to get yourself off the ground

It would maybe help to post details about the prognosis as the people on this forum are so helpful it’s incredible .. I’m only learning at the moment so can’t offer real advice but these other people are so incredible I have been so thankful for them.

[Hidden]

My guy was diagnosed in June, 2016. Stage IV and highly metastasized throughout his skeletal system. PSA 1,505. I won’t say there haven’t been some rough spots, but overall he’s doing ok and still mobile. You’ve found the right sight for reassurance and help. Read all you can. Get an understanding of the options. There are, luckily, many today. Hug your guy tight and tell him you’ll fight this together. He’s not alone and neither are you. Hang in there.

[catsup]

Dont be terrified .I was diagnosed the with stage 4 with mets spread all over my bones.

If you have a good oncologist that puts you on the correct treatment from the start you will be fine for a long time. I am 8 years in and still battling, looking to add another 5.

Good luck and stay positive

[marchinda]

Hi there - So sorry to hear about the diagnosis. My husband was diagnosed with Stage 4 and extensive bone metastases about 2.5 years ago. At the time, our children were 5, 7, and 9, and they are definitely the X factor here. It has made us feel very alone to be managing prostate cancer while trying to raise our young boys. Everything is more difficult - we need to get a babysitter and arrange soccer schedules in order to go to doctors appointments, when your kids misbehave and say they want a "different dad" it's devastating instead of humorous, and when you're trying to minister to your husband's mental health after a devastating diagnosis, the last thing you need to deal with is, "He hit me first!!!" from the kids. Everyone pictures cancer as something you and your spouse deal with long after the kiddos have left for college. So I just wanted to say that I understand.

There is a lot of hope, and there are so many treatment options. The trial doc for the most recent treatment my husband has had called him a "baby" in terms of what he's been treated with. So far, just Lupron, Zytega, some palliative radiation, CAR-T, and chemo is the next step. There are so many options available down the road.

If you want to PM me, please feel free. I'm not sure we're the best examples of parents dealing with young children and Stage 4 cancer, but sometimes it helps to just know there's someone else in the same place.

[ishitasen]

Please don't be terrified so much. There are multiple treatment options available for stage IV prostate cancer treatment which includes hormonal, chemotherapy, Lu-177, immunotherapy, etc. and most of these patients perform quite well during initial treatment days. Can you share your husband's detailed history?