Need Hope and reassurance

[CBurnett]

My dad's cancer has taken off so rapidly and painfully. I am need hope or reassurance that all that he is going through is or has worked for someone out there- have any of you had bone mets wide spread from skull-spine-ribs-hips-femur-tibia? Bones So weak that if you reach or turn the wrong way you cracked a rib. I am scared for him but I hope and pray the chemo docetaxal, prednisone, Lupron and xgeva will work together to stop the growth, and pain. Anyone???

[erjlg3]

So very sorry The Xgeva worked fabulous for my husband's bones but he did not have chemo and he has 5 met spots. Wishing, hoping praying for your Dad.

[howardroark]

When I was diagnosed the pain in my spine and ribs was to the point where I needed a walker to get around. My PSA was peaked at reading was 5,329 on the day I started docetaxel (started Firmagon one week prior) and Xgeva. Quickly started to feel better and regained my mobility and strength. I did end up with a few fractured ribs and collapsed T11 vertebrae. That was about 2 years ago. Feeling much better today. Best wishes for your father - it is a challenging journey. Couple of things which I think have helped me is getting very involved in my care, joining a local prostate cancer support group where we meet twice a month in our area and folks show up to talk, exercising daily and eating mostly vegetables and fruit.

[Hidden in reply to howardroark]

Fruits, beyond maybe a few berries a day, have not proved useful in fighting cancer unless I've missed some new recent finding. And "Where's the beef?" ... i.e., the protein invaluable to slowing muscle loss? Even ADT strips it from our bodies, and many of the subsequent drugs continue the process. On top of that, ADT and some of the other drugs push us towards diabetes, with and before which we need to stop eating starches (e.g., bread, potatoes, pasta, tropical fruits, dried fruits) to drive our insulin levels down. A proper diet will CURE even advanced Type II diabetes within weeks (it can't regenerate that foot or restore your vision, but it can stop that stuff in its tracks with NO drugs.)

[Scruffybut1]

Stay calm for your dad. I was diagnosed with mets mainly bones, hips,spine, back ribs,,chest, scapulae in Nov '14 and immediately on Zoladex. PSA 200. Stage 4 but no previous symptoms or pain. After 10 months added Docetaxel with 10 cycles. Still no probs or pain PSA down to average of 2. Then 5 months only Zoladex and PSA up to 26. Next Zytiga from Sept '16. In 2 weeks PSA 0.58 I was astonished. Another MRI and new whole body bone scan. Results showed no new lesions AND over 90% of bone mets gone. Now 0.06. Next bloods today,(monthly), PSA result tomorrow I anticipate a rise. So for me chemo followed by Zytiga great response. Hope your dad's sequence is similar. I am 71 and fit and strong. God bless.

[alsam]

We are out there watching posts of this nature surface so rest assured yours is not falling on blind eyes ...I am a 5 year advanced metastatic prostate cancer survivor...My presenting PSA level was recorded as over 800 ng/ml with a gleason score of 4+3=7...and months to live..At this point it was meant to be downhill for me but I bounced back because i never gave up on a very hard and painful journey.....January 2017 represents my fifth year in this journey. ....cured..NO...managed YES...and long may it reign...So you see my friend it is possible. .the road ahead for patient and son will be painful and bumpy thats for sure but its doable. ....My journey became a book...thats how I did it...Your not alone in your journey...All the best......

[CBurnett in reply to alsam]

Thank you!! This is what I needed to hear.

[CBurnett in reply to alsam]

What was your treatment route?

[alsam in reply to CBurnett]

My treatment route was the stampede drug trials program comprising of Aberaterone tablets x 4 per day plus prednislone x 2 per day. .then steriods and pain relief meds...my PSA reduced to less than 0.1 ng/ml over a six month period..and as remainded so for over 4 years...clearly i am very sensitive to this medication..but it must be said not everyone as the same luck....Take Care glad my response helped you...in some small way...

[Hidden in reply to alsam]

Stampede has many arms. It should be called centipede.

[alsam in reply to Hidden]

Love the humour...Arm G was where I was allocated...but since 2012 it as changed direction with so much more added...i guess your right...Centipede. ..

[Beermaker]

As far as the bone fractures go, anyone on ADT of any type needs to take Prolia shots to preserve, and even rebuild bone strength. Before I started on Prolia (at the very strong insistance of my onc and his lead infusion NP) I had a dexla scan which showed osteopenia in a few spots. Three years later, I had another - and I had NO osteopenia. I have to recommend Prolia (one shot every 6 months) to all who have any bone problems or are on ADT.

[TommyTV]

Hi

I was diagnosed just over 5 1/2 years ago at 61 with PSA 600+, Gleason 7, mets in skull, shoulder, 2 ribs, pelvis, both femurs. I could hardly walk and in constant pain. Although I wasn't told at the time, my life expectancy was 6 months. Good job they didn't tell me, I'd have spent up!

Started on Stampede trial in U.K., Aberaterone plus prednisone. Within 4 weeks, PSA immeasurable, it's stayed there up to my last test 6 months ago. I'm due another test this Thursday, where I'm hoping it will still be the same, but I'm in very little pain, just my legs are a mess from muscle wastage, and ache at night if I stand or walk too much during the day. It's an odd sensation, like I can feel my bones 'buzzing'.

I'm in great spirits, enjoying life, working about 6 hours a day (sedentary of course at a PC) and I've pretty much got over most of the side effects of losing testosterone quickly, I.e. Going through 'the change' like women do.

A positive attitude is paramount. There are no miracle cures, save your money.

There are people on this forum who are still here after 14 years. A lot has changed, and is constantly changing even since I was diagnosed. New combinations of drugs, immunology, and loads of research.

I look on my illness as more of a chronic illness like diabetes these days, although I do think about it every day.

Don't despair, this brand of cancer is better than most, you've got plenty of time. Your dad will be going through a really bad time right now, he'll get depressed a couple of days a month, but gradually get through it. This forum is full of people who know what your family is going through, we're here to help.

Martin

[Vinnyf in reply to TommyTV]

That's amazing and very hopeful for myself, you are a 100% in what your saying,I truly feel a positive attitude is key and as long as it can be managed I can feel with that it us very rough at first,the toughest part for me is I'm that guy that wouldn't stop going no matter what,even before diagnosis I still pushed through and went to work did my side jobs and just felt with the pain,so for thesending people just experiencing this it's very hard at first but you stay strong tell this cap where to go and how to get there and deal with it or it will consume you. I'm not a religious person but a little faith and a lot of heart he should pull through

[Rguerrero1959 in reply to Vinnyf]

Hi, Im Robert. I'm 58 and waiting on my PSA results. So why am i here responding to you? Well because of my symptoms (fairly consistent with advanced prostate cancer) I am preparing myself by joining this group for the purpose of real life feedback and encouragement as well as support. Hope to talk with you more. Fight on.

[CBurnett in reply to Rguerrero1959]

Praying for you that your psa is still good. This group is wonderful with lots of knowledge, research, and experiences to share.

[TommyTV]

Hi

I missed out I'm also on Zoladex implants every 12 weeks too.

Cheers

Martin

[Vinnyf]

Get pain under control,the medication for bones works,just have to give it time good luck

[CBurnett in reply to Vinnyf]

Thank you

[Vinnyf in reply to Vinnyf]

The other thing I would say for me make sure you have a good relationship with your oncologist and a positive attitude screw this crap,keep it in the bones for as long as possible and should be good,