Hi I am new here. Diagnosed March 2018. Bone mets in skull, jaw, arms, spine, ribs, pelvic, hips. Too many to count. No Gleason score just says treat as high grade. Alk phos level 4038. 58% from bones 42% from liver. Has anyone had alk phos this high? Firmagon 03-26 and Lupron 04-09-2018.
Aggressive metastic Very high alk phos - Advanced Prostate...
Aggressive metastic Very high alk phos
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Br1950
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Thanks for the input. Psa is only 6.7. I went in for the pain in my left hip and they did the blood work and found high alk phos. Did the bone scan and biopsy along wth MRI and cat scans. Fracture and compression in L4 found and very concerned about left leg breaking. I am just finishing up pain radiation next week. Zometa starts soon. Zytiga is an option but concerned about liver. Onc docs divided on chemo because of liver. Bilirubin 1.8. Just trying to figure it all out and see if there is anyone else out there with low psa and high alk with liver problems. They had us meet with Pallative care last week and are talking hospice. They are asking me about quality vs quantity. Apparently rare and very aggressive. Vietnam Vet and Agent Orange.
I would go the drug route and find a way to protect your liver...hospice is where you go to die
Isn't that the truth. Stay N Strong!
• in reply toBr1950
You can fight this. It is hell , but you can survive.Soul searching , prayers we get thru. Welcome to HL .This can save you much lamenting and not knowing what to expect is the fear that if dwelled upon can hamper recovery. You’re going to be steamrolled until you get on top of pc. This is “Our” test in life. Stay true to self and family and fight hard for your life. We need reasons to live that a grander than the suffering that we will need to endure. Joy of life> APC .
Br1950• in reply to
Thanks for the encouragement!
• in reply toBr1950
Thank you , we need to encourage each other.. I’ll take all of the encouraging words that I can get. I’m praying for you to get into that no -pain zone and stay there for awhile.. keep the faith!
anthonyq• in reply to
Well said, Lulu700!
We all have to realize in this forum that we will eventually succumb to this disease. After my RP 18 years ago & 6 other operations to treat bladder leakage, I understand FULLY when someone is getting tired. read between the lines my friends.Good luck to all.
• in reply tokenner
Realism is an empty hole. I was unfortunate enough not to be a candidate for an RP. None of us is getting out of this alive. That surely doesn’t help the guys starting out this journey like I was in fear. Telling everyone “Captain Obvious” that APC will kill us , is just repetitive negativity.
Welcome Home Brother Br1950,
I was in RVN from 70-71 in Army and have been in this battle for almost six years (see bio for complete treatment history).
You have many treatment options ahead. Aggressive cancer requires aggressive treatment. Quality of care matters. Get a second opinion ASAP from a Medical Oncologist who specializes in prostate cancer.
Best wishes. Never Give In.
Mark, Atlanta
Hi BR. !
Listen Brother you're a Vietnam veteran to me that makes you a warrior. You said they are talking hospice I say find new doctors and options . Please remember a famous quote,Never give up never surrender you have joined a group of fellow PC fighters there is a wealth of knowledge and Brotherhood here. Go look at all the posts and gain as much information from them along with researching options. Leo
What is alk. phos, thats a new one to me! Im new here and trying to figure out all these abbreviations. I am on lupron shot once a month, casodex daily and fozomax once a week. Url. says I have "high grade stuff" also. Had 6 cycles of upfront chemo last summer
Br1950• in reply to
It is an enzyme that is released into blood. Usually caused from liver or bone.
• in reply to
TMI , you’ll know it all by this time next year. You are going to be here. Its just not you in this fight. There are thousands of us.You do what’s right for you. It’s a twisted path but we are all on it. I haven’t done chemo. I dread that. You did it. Good job . We’re doing our best to be in it for the long haul
.At the same time acknowledging that we don’t have the final say in
Anything . Good days bad days, we all have them .The good outweighs the bad for me today..so I’m going with it. Have a good spring weekend. Hope the birds are chirping in your neighborhood today as they are here for me. Sorry for this Bull S!!! Suffering . It’s all part of the test of survival. Not the most important thing to know all of the abbreviations and acronyms,you’ll learn these in time. The battle for me is against self and negative thought. Those lead down hill fast.
If you can just find some peace with self and the world in
This APC madness you’ll be ahead of the pack. The initial psychology is brutal for us guys. Get over that and it gets easier. That’s neither here nor there right now. You need to get out of this physical pains and emotional
Stress of this hidden figure ( APC ) . Once out of that then you can take a deep sigh and things will
Be better then now.at least and hope for a semi pain free existence.
Did they see any liver mets? If so, hopefully, the Lupron will shrink any liver mets enough to begin chemotherapy. Perhaps they can biopsy a metastasis and do both a pathological and a genomic analysis of it. Are the bone mets lytic or blastic?
I don't know if lyric or blasting. I wii be asking. It all seems to be happening so fast.
• in reply toBr1950
Prostate cancer mets are almost always osteoblastic whereas many other cancers have what are called Lytic mets. Lytic mets increase your calcium level. Do you know what your calcium level is?
Here's something on Blastic Vs Lytic mets.
news.cancerconnect.com/type...
Your PSA is fairly low for having such extensive mets. Did they do a biospy to see if it's small cell?
You can also have extermely high ALK PHOS levels with a billiary obstruction. Your Billirubin is a bit elevated at 1.8, but it is one of the slower indications to change. There is also a bone specific ALK PHOS test that can be done if you haven't already.
These are things to talk to your doctor about. I wish you well in your treatment. It's a real shock and one that many of us here have been through. I was diagnosed at stage 4 with PSA of 463, ALK PHOS of 605.
Br1950• in reply to
Biopsy report says Intraductal carcinoma highly aggressive as it represents intraductal spread of an infiltrating adenocarcinoma. Gaya 3 highlights rare tumor cells. Thanks for link. I will check it out.
Caught up in the whirlwind... you need some good goggles and a sense of direction.. then you’ll need recovery time from being steamrolled with treatments leading to castration. That’s our goal here. Not a rosy picture to paint. But you’ll adjust and live to paint another day... you’re climbing the mountains before you reach the valley and some real living without out much pain and no fear.. conquer these peaks and the Decent will be 100 times more enjoyable. You can gain ground on this beast.
Take time to breath .....🌹
Shit if you lasted though NAM you sure can beat those little M.F.s inside of you.
Good Luck and Good Healh.
j-o-h-n Sunday 04/29/2018 1:47 AM EDT
Mine was not that high. It was 900 and actually that was the way they found that I had stage 4. Think 90 is normal. Had my annual well care checkup is how they found it. Sorry to hear about your cancer ,hang in there it’s a long road from where you are right now
Thanks
Urosodiol helps protect the liver. Took it to help recover from Jaundice after too high a dose of Ketoconozole.
Thanks I will ask about it.
Misspelled it. It is Ursodiol. History. Over 1000 years ago in china, alcoholics who developed liver problems ate the meat of Black Bears and found it to help with Jaundice. Black bear meat was high in Ursodiol. Today, Ursodiol is created synthetically without killing bears.
Another ancient remedy for liver is filtered sunlight. Taking a nap in your car with sun thru the windows is healthy. Sitting in a room of your home with a sunny window is healthy. Light through windows in the ceiling was used in Victorian times helped newborn babies that were born with Jaundice.
When abnormal bone tissue is being formed by cancer cells, levels of alkaline phosphatase rise. High levels of ALP can also means liver problems like cirrhosis and cancer. Doctors and test indicative that you have metastatic cancer in the bones and liver. That is a tough diagnosis.
Your doctor is preparing you for the worse to get your affairs in order or has written you off. It's your choice to surrender of go down fighting. If you choose to fight, both area of metastatic cancer, bone and liver, are treated with chemotherapy. And, while not knowing your true condition nor whether your guy is a specialist in treating prostate cancer and not, say lung, breast, pancreatic, or any of the other cancers out there, I find it hard to believe that your guy says no chemotherapy is indicated for both cancers.
I am reminded of my best friend who was told by his prostate cancer soecislist in Seattle that he would not see Christmas, three months hence. A trip to Houston to see my Researcher and subsequent move, gave him 38 months with his family and old friends; for which he was very appreciative. Yes, PCa finally did him in, but he got to spend some quality time with his eight year old son, ten year old daughter, and wife.
Like us, he was a Vietnam Vet. There terrible ravished of war continues to kill Warriors of this Country who answered the call to serve. I salute you and will pray that you have more time with your family and friends.
You can find Prostate Cancer specialists and researchers at major medical schools and their linked hospitals. I chose this route and while I only had bone metastases, they were resolved with chemotherapy cocktail in a trial. I attribute my success to my fine Physician and the Hand of our Creator.
Gourd Dancer
Br1950• in reply to
Appreciate all of info. In the middle of 2nd opinion and I am feeling more hopeful. After finding this site i feel there is hope!
Hello Br1950,
My ALP was 1650 on 3/22/16. It had dropped into the normal range, but was measured at 158 last week. My PSA last week wasa 3.6. On 3/22/16 it was 800+. Last week my oncologist took me off of zytiga and recommended Radium 223. I was on zytiga for a year. At this point I'm not sure what to make of this and will be consulting with another oncologist. Keep fighting brother!
Take Care.
My husband's Alkaline phosphate was 1698 on July 17th of last year and by the end of August it was back down to 146. We use a whole food plant based diet. Mostly eating vegetables and fruits and starch.. potatoes and rice etc. He has a rare prostate cancer that does not raise the PSA. His is small cell or neuroendocrine prostate cancer. Last set of scans were good. We were lucky to get a good oncologist who specialized in prostate cancer... he had a good idea of what my husband had before the pathology came back.. and he was correct. Our doctor is now in Newark, NJ at the hospital there.. far away from the southwest where we live. But our current doctor is good too.
Definitely get a second opinion.. We found having a hopeful oncologist really helped. There are a lot of treatments for prostate cancer.
Do you get your care from the VA Hospital ? If you do and they do not have an oncologist that specialized in prostate cancer you can request to be sent out. Also if you are going to the VA ask for a referral for integrative doctor. It won't hurt to have as many folks as you can in your corner.. Increasing nutrition and other elements will help in this fight, especially if you end up getting chemo.
Tons of hugs and please know that we will pray for you!
Softwaremom
• in reply tosoftwaremom00
"Do you get your care from the VA Hospital ? If you do and they do not have an oncologist that specialized in prostate cancer you can request to be sent out." softwaremom00, have you tried requesting to be "sent out"? Thanks.
softwaremom00• in reply to
We do not get care from the VA. We go to the local university hospital and get relatively good care. Thanks for asking.
My husband goes to VA hospital and his oncologist there is just regular medical oncologist. He seems kind of reluctant on some of the newer things for prostate cancer but he did tell my husband about Provenge but that the VA doesn't cover it because of the expense. But we were able to get it covered thru medicare and his supplement insurance to cover it all. But the VA is wanting to get him started on chemo again. How do you go about requesting to be sent out?
Thanks
I am being treated at Va. The second opinion is outside Va. I need to learn more about diets. Thanks
Persistence tends to win out at the VA. I have a family member who works at the VA and you can get good care there/through them if you push for it. A lot of folks call their local congressional representative.. and this sometimes helps.
Good Luck.
Br1950:?
Sounds like you got slammed with the Pca being super aggressive. Sorry to read that. I’m a retired DC( chiropractor), and I know Alkaline phosphatase is a simple blood test used to rule out above normal enzymatic liver and or bone activity. This test leads docs to run follow up with tests of the liver & skeletal system to determine the pathology source. It seems to me that once the PSA hits ariund 200 or so, the risk for metastatic cancer really Jumps. To answer your question, I had a PSA that hit the high 80’s and that’s when I started to develop bone cancer involvement, back pain and lots of concern.?. At that time I ran an alkaline Phos test and my Alk Phos was 100 points sbove normal. A bone scan verified spread to my hip joints, lateral ribs, spine and calvarium(skull). Docs called it diffuse PCa bone spread. I’m currently on Lupron with an oncologist specializing in PCa appt. in late July. Consider getting blood tested using the guardant360 test for identifying genetic mutations related to cancer for optimizing targeted treatment by your oncologist. Regarding diet look at any books by Charlotte or Max Gerson, Ty Bollengers book Csncer, think outside the box and a book titled Radical remission, Kelly Turner. She talks about diets and lots of cases where cancer patients healed themselves from all kinds of cancers, including Prostate. Good luck fighting this. We here are all with you. Stan AK/AZ
I really do feel like I have been slammed! But thanks to everyone here I am coming up with a whole new list of questions. Another appointment next week.
My dad’s alk phos was in the 2,000’s. It is down to 202 as of last week. He is on Lupron, zytiga and prednisone.
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