Hey

[ewhite999]

I'm new to this site. Just started reading the Stage 4 prostate cancer posts and finding them extremely helpful. Much appreciated! I was diagnosed with Stage 4 in Aug 2016, finished chemo in Winter of 2016, I get Lupron and Xgeva shots quarterly. PSA was 0.1 after chemo, is now 5. Bone scans and CT scans are clean.

[BigRich]

My doctor told me the standard of care is Lupron and Zytiga for Stage 4 prostate cancer. Discuss this with your medical doctor.

Rich

[Hidden]

You are far from alone. This group has hundreds of users wearing the same shoes.

If I may suggest, follow a group member named pjoshea13. In my amateur opinion (key word amateur) he knows more about prostate cancer than most oncologists, and I mean no disrespect to oncologists specializing in prostate cancer. Good luck.

[Hidden]

Welcome to a great source of info and experienced advice. It helps to have answers and comrades in arms against a mutual opponent.

[JamesAtlanta]

Welcome to our group! Sounds like you’ve made great progress.

As Rich suggests, it may be time for Zytiga and Prednisone now. My oncologist at MD Anderson has told me that she wants me to start this when my PSA reaches 2.0. It’s 1.8 now. (I was diagnosed in May of 2015, PSA 227, Gleason 8, bone met in T8 vertebra.) I have a new PSA test on Monday and will learn if it’s time to start. If I learn anything of use to this group at my Tuesday oncologist appointment, I’ll post it for you and others to read.

Best of luck with your journey - we are all pulling for you!

James

[Apollo123]

Hi welcome to the site, there’s lots of help on here and many long term survivors who fill me with purpose and hope everyday. I was diagnosed March this year with Gleason 9. The stuff I have learnt has been so valuable, I have learnt how prostate cancer is treated from America to India by just reading posts which helps me take more control of the decisions regarding my treatment. 👍

[Dr_WHO]

So sorry that you are here but there is not a better group of men and women. As some have posted, you may want to discuss with your medical oncologist the use of Lupron and Zytiga. Two studies came out this summer where (in their words) game changing results were discussed. The trials were the Stampede and Latitude studies. Here is some links

nejm.org/doi/full/10.1056/N...

ascopost.com/News/55700

A new scan called Axumin PET, can find mets. a whole lot smaller than normal scans. A reference is listed below.

prostateoncology.com/2017/0...

One word of caution, the test is extremely expensive. Make sure you insurance company covers it. I had one done last summer after I was assured that it was approved. I just got a letter about six months after the scan saying that they will not cover it (even though Medicare will pay for it). I am appealing it but as of now I owe over $11,000!

[Sisira]

Hope these treatments will give you a LONG LEASE OF LIFE.

Best wishes!

Sisira

[RKWade]

Welcome brother. I am also relatively new but know thru faith, improved and more additional treatment options you have much hope and expectation to live with the disease as opposed to succumb to it. Stay strong there are VERY knowledgeable, empathetic and people who want to help and give it to you straight. You have found a good group of people.

[JimVanHorn]

You know there are many different types of prostate cancer. Fast growing and slow growing. There are differences in our ages, insurance, other diseases, location of cancer in prostate, opinions of our doctors and how advanced the cancer in our bodies. So all we can do is tell what happened to us and what worked and what did not for us.

So I am 72 years old, medicare insurance. I have heart, diabetes, and kidney diseases. My Gleason score was 4+3=7. I had stage 1 cancer in 2007, and had 42 radiations then in 2011 it metastasized so I had 30 more radiations and started Lupron. I took Casodex for 3 weeks to stop the increase of testosterone when I started Lupron. I have been on Eligard (generic Lupron) now for 6 years. I have very few side effects. My PSA has been 0.00 for 6 years. I got second opinions from 2 other doctors. Just keep your life happy and busy and keep truckin'.

[ewhite999 in reply to JimVanHorn]

Thanks for the reply! PSA at 0.00 for 6 years is the type of news we all like to hear about.

[JimVanHorn in reply to ewhite999]

I would like you to read a short explanation of PCa stages on Wed MD, under "stages of Prostate Cancer". Under stage 1 I was given radiation, because there were no metastases in my body, but they did not start me on Lupron until my tests showed problems and my PSA went up to 78. Then I had 30 more radiations and was stage 4.

On radiation the proton beam is more accurate than what I had with normal radiation. They injected 3 gold flecks into me before the radiation. These flecks give a three dimensional pattern to the x-ray machine that tells the machine who I am, and also if my intestine moves (because of poop in the intestine), the x-ray machine follows your movement. Note: the prostate gland is not attached to a bone, so it floats around. SO both machines are extremely accurate, but the proton machine is more accurate. They claim they can kill a cancer cell and not effect the cell next to it. I think that is a exaggeration, but we have no way to prove it and plenty of prostate cells. I had to pay for my first radiations because of no insurance. A hospital wanted $130,000 for 42 radiations and my urologist who had the exact same machine said they would charge what they got paid from medicare, $30,000!

Also, the second year of Lupron my bone density test showed weakening. I take 1Gm of Calcium Carbonate daily, 4000 units Vit D3 and every 6 months I got a shot of Xgeva for about 2 years. No side effects from this for me. Also, I had to watch my iron (Ferrin level) and my B12 levels on my CBC (complete blood count). From time to time my Red blood cell count goes down to near 10.0 and it should be 13.6. My oncologist watches this so now I am on vitamin B12 (5000 units) under the tongue and Fergon (Ferris gluconate), both over the counter at drug stores. I will take this for about 8 months, then stop. We do have to read our lab tests, look tests up on a computer and call our physician when we have questions, not just wait 3 months for the next shot. Thanks for your reply. I was a pharmacist for CVS for 35 years and can help you figure things out. Keep truckin'.

[Hazard]

Welcome, happy to meet you ewhite.

Can you get a PET scan? My PSA started going up after radiation treatment, when PSA got to 2.5 I had a PET/PSMA scan which showed a tumour in my pelvis. I started ADT immediately, even so my PSA has risen to 21 over the last 6 months. I had a bone scan and CT scan last week to find out what is going on - and it came up clean - but that is sure as hell not right, the scan didn't even show the known tumour. CT scan does not find small mets. Get a PET scan if you can.

[ewhite999 in reply to Hazard]

Thanks for the advice! I have an appointment next Tuesday. I;ll ask about a PET scan.