Advanced Prostate Cancer Update

[lincolnj8]

Been 13 months now. Spent 3 days in the hospital taking 4 pints of blood to stay alive. MO put me on Zytiga, prednisone, and lupron about a month after diagnosed. Psa was at 800, now at .1 (5 months now), Phosphate was at 3000, now is at 100. Sugar spiking to 170, bp up to 150, I figure it is taking prednisone right before going in to MO for blood work and monthly infusion. Hemoglobin is at 12.5 (was under 3). Watching diet now to get the sugar number down and excercising too. Just an update. Feeling great. Thank God everything is working. Hope this is an inspiration for others. There is hope for extending our lives.

[NPfisherman]

Keep going, brother...fight on... exercise....diet....all important...glad you are doing well....Giving thanks to God...you got your thinking right...your plan is working....Congratulations.... Been at this 3 months, and at times, it just feels overwhelming...

Good luck to us all,

Fish

[lincolnj8 in reply to NPfisherman]

It is overwhelming. Thank you for your post, You seem to have a great attitude. And God is in the mix

[NPfisherman in reply to lincolnj8]

I try every day, but sometimes I fall short of the glory of God...thanks be to Jesus who gave his life to save me...a wretched sinner... daily living tries me and this evil disease has not made it easier...

God be with us all....

Fish

[Hidden in reply to NPfisherman]

Gracias a Dios Don Pescado ..

[Peterd110]

That is awesome!!!

[lincolnj8 in reply to Peterd110]

Thanks Peterd110

[dockam]

Great results! Keep it up. Maybe, if you're not on it already, start Metformin to help reduce the blood sugars, insulin and IGF-1 which have been associated with cancer. I'm on 2000mg/day and many others on this forum also are on it. I was 840.2 in 12/2014 and got a nadir of 0.1 in 2017, did 30 months ADT(Lupron/Casodex) and back on the Lupron as PSA got to 10.8

ncbi.nlm.nih.gov/pmc/articl...

renalandurologynews.com/pro...

endocrineweb.com/profession...

My story: theloopnewspaper.com/story/...

Fight on Brother!

Randy

[lincolnj8 in reply to dockam]

Thanks for your post, I'll bring up the Metformin as I go see my MO in 3 days

[spikezoey in reply to dockam]

I second the metformin! It also generally helps with PCa. My hubby is on the same regimen as you (except degaralex instead of lupron) and they've added metformin simply because it seems to help with PCa; for you, it can probably do the added help with the glucose levels. Much love to you and thinking of you.

[jkholmes]

Great news keep kicking it's ass. Keep fighting the good fight

[lincolnj8 in reply to jkholmes]

Thanks jkholmes. We'll give her hell

[Hidden]

Shocked that you needed blood..I’m sorry to hear that. What caused it? What do you infuse monthly?

[lincolnj8 in reply to Hidden]

66 yrs old, healthy as an ox. Found out about a cancer from X rays (with a sugar pill?) 7 weeks before Christmas. He said that I had lymphomic cancer or prostate cancer. Had a psa done, did the pin test (gleason?) a week later . The urologist and Gp were trying to decide if I should go to a chemo doctor. Daughter was driving me home from my family doctor after giving more blood and took me to the er. She went on her smart phone and looked at the results and seen that my hemoglobin/ number was under 3. She drove me to the er. The er admitted me. That's where I ran into a MO at the hospital, He ask me if I wanted him for a MO. I said sure (didn't know what a MO was- didn't much care about much at the time, was scared). After the first day in the hospital I was getting worse so they gave me oxygen and 2 pints of blood a day for 2 days to keep me going. Were going to give me more. Oh yeh, lots of B-12 shots. Said my body wasn't producing blood. All this is really fuzzy to me as I was sleeping much of the time. Now I get a butt shot (I call it) Lupron every 3 months and an infusion every month to keep my bones strong. They take a blood sample and adjust the infusion accordingly plus a b-12 shot. I take Zytiga, 2 doses of prednisone, 2 Oscals (calcium plus D) Daily. Also a one a day multi vitamin, plus a Pantoprazoie sodium pill for acid reflux? Hope I explained this good enough. A year in and still hard to understand much of the treatment discussed on our forum.

[Hidden in reply to lincolnj8]

Lupron , that’s what I thought.. sorry to make you explain anything friend. 66 strong as an ox.. damm.. Who’d of thunk that we need to be rocket scientist in order to extend our stays.here... B-12 was good.. I Hope that the clouds clear and you regain some footing.. Scott

[lincolnj8 in reply to Hidden]

B-12 every visit

[Hidden in reply to lincolnj8]

How do the bone meds effect you. Any bad side effects?

[lincolnj8 in reply to Hidden]

Well, the pain in my side (ribs) comes and goes. I went and cut, split and stacked firewood last year. Kind of pushed myself to do it. Wife and I like the wood heat. The MO laughed at me when I said that I still had that pain in my side when I was harvesting firewood. He told me not to be lifting heavy things like I used to. The pain in my left leg disappeared after about 6 months. The spots in the pelvic area never bothered me. At the time the Mo wasn't really concerned about the spread of the cancer. I guess none of that would matter if your body isn't making blood. My blood work got better every month. PSA dropped too. Sugar and blood pressure is up now. I read that prednisone does that, especially when you take it right before the doctors visit. I'm up in the air right now about a flue shot and pneumonia shot, also a colonoscopy. Sugar runs in the family, the more you weigh, the odds of becoming diabetic increase. All this takes control of your life you know. But we have no choice..Btw, my MO has a great positive attitude. Bet he seen them come and go. He poo poos my small pains as maybe he knows what may be coming down the road. Think he wants me to just go out and do what I want to do and enjoy life.

[Ldb01 in reply to lincolnj8]

Hubby also gets B12

[FrancescaO in reply to lincolnj8]

Thank you for sharing all this information. It does help others like me who have so many questions. My dad is 93 and all his meds and treatment sound very similar. The doctor had first started him on Xtandi but when that stopped showing progress they just recently prescribed Zytiga. Right now he doesn’t want to take. He feels so good and looks and acts at least 10+ years younger...he’s afraid side effects may make him feel bad.

[lincolnj8 in reply to FrancescaO]

The side affects are annoying but we have to tuff it up and deal with them. Beats the alternative.

[Hidden in reply to FrancescaO]

God had blessed your papa with such a long life and a caring Son. He did somethings right.. Take care good son...

[MelaniePaul]

So happy for you!

[lincolnj8 in reply to MelaniePaul]

Thank you MelaniePaul

[DeanNelson in reply to MelaniePaul]

Hi MelaniePaul,

Nice to see you, you ok?

[lincolnj8 in reply to DeanNelson]

Ahh, life is good

[curious-mind1]

Wow, this is great news! Keep taking the Zytiga, and here's to many more years of Zytiga working for you!

Arthur

[lincolnj8 in reply to curious-mind1]

Thanks for the encouragement

[Ian2017]

I had a similar experience. Diagnosed with advanced PCa in July 2017 .. just after that I had 5 sessions of radiation to alleviate pain followed by a couple of blood transfusions about 2 weeks apart. Around 2 weeks later I was feeling tired and fatigued. My sister noticed that I was looking worse than previously and arranged that I check in immediately at the ER. Going through the doors was the last thing I remembered for the next 4 days. Haemoglobin dropped to 3. I still don't know what caused the sudden drop but lucky to be alive today.

[Hidden in reply to Ian2017]

I’m glad your here too. Whoa..

[lincolnj8 in reply to Ian2017]

Hemoglobin dropped to 3? Wow!! You must be a strong person to survive that one. I figure if we stay alive just long enough that they'll have a cure for this. It is a slow cancer and I figure that should make it easier to find that cure. I was told that I had my PC for 5 years. Wish my GP would have done a psa test. Oh well, I'm enjoying every day now!!

[Hidden in reply to lincolnj8]

I didn’t have insurance and rarely went to a dr..my almost fatal mistake... they told me that I had this PC inside me for years to get to where it shut down my kidneys . tubes for a year i was told not to lift more than 10 lbs.. I didn’t. My muscle went away with adt & RT.. It’s a battle to maintain or regain muscle... it’s just not there with no t to feed it., we deal with limited abilities.. Se la ve...The future is not ours to see ... .whatever will be will be...singing and dancin in the rain... Hope that today is a good day for you.. Take it easy.... lincolnj8....

[lincolnj8 in reply to Hidden]

Yes it is hard to make and keep muscle. Boy the waist line fat is easy.. I've had many great days and this is one. Have rib pain now and then but being vey active will do that. right now I'm singing and dancing in the snow. lol

[j-o-h-n]

4 pints of blood? Some poor vampire is going around hungry because of you...Good to see ya hanging in there..

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 01/14/2019 5:20 PM EST

[lincolnj8 in reply to j-o-h-n]

Thanks j-o-h-n, plan on being around for a while. screw the vampire.. lol

[tallguy2]

Awesome results...wow, a PSA of 0.1 after starting at 800! Way to go! You are an inspiration for us all.

[lincolnj8 in reply to tallguy2]

Thank you tallguy2. It's been a rough ride, but now I'm living the life.

[lincolnj8 in reply to tallguy2]

After over a year of this tallguy2 , I'm feeling really great. Have a lot of energy yet enjoy the movies too. This site is an inspiration to me. We're all rowing the same boat

[Hidden in reply to lincolnj8]

Row,row,row your boat...the beatings will continue until morale improves...🛶

[Lunbo]

Great news! Was on Zytiga 5 years before moving to Xtandi and now, Erleada so hopefully you have years ahead. I'm 81 and 18 years with PCa.

Lunbo.

[lincolnj8 in reply to Lunbo]

Love to hear that Lunbo.

[Hidden in reply to Lunbo]

Amazing Lunbo.. Thanks for sharing.. you inspire....

[Lisa0627]

Hi Lincoln-

My Dad has similar numbers to what you stated in your post. As of the 8th, alkaline phos 1500 (started zytiga 1/31 ) , Psa 458 (which has dropped from 1000+). Billirubin 1.7 which seems to be a concern ? They want him to have repeat labs this week. Did your BIllirubin go up along with your alkaline phos ?

[lincolnj8 in reply to Lisa0627]

Don't know Lisa0627. Don't see or remember that one. I'll check. Any result that was too high or low I watched. Glucose and blood pressure rose over the last 14 months and the Doctor wasn't too concerned. Yet. I'll check my paperwork and get back to you..

[Hidden]

You are inspiring . Keep it up ...

[NPfisherman in reply to Hidden]

You...are inspiring, me Capo... enjoy the sun...gotta paint the porch later.....guests are coming...LOL... just want to snuggle up to her in the living room and watch some tube....

Don Pescado

[Hidden in reply to NPfisherman]

Home sweet home.