Hello, I have been on this site since my 58 year old husband was finally diagnosed with stage 4, metastatic prostate cancer. He had a PSA of 112 and was having severe back pain. After many misdiagnoses from urologists, primary care physicians and a spine specialist, he was finally diagnosed but left unable to walk from the pressure on his spinal cord. He had radiation, and a firmagon (spelling?) shot. We saw a neurologist who suggested we do surgery even though he had already had radiation. He got the back surgery to try to remove the pressure from his spinal cord, and now is walking with a walker. He takes bicalutamide and had a 6 month lupron shot. When his incision finally heals, he will go on Zytiga.
I am overall supremely worried about all this, and I feel so uninformed (except when I'm on this site), so I am asking for some opinions. His PSA went 112, 40, 14, 4, .7, .4, .7 - I'm concerned that it went up from .4 to .7 this last 30 day period. Is waiting for wound to heal going to cause a bigger problem? Should I be worried that PSA didn't go lower? We are going to Duke for a second visit with a prostate cancer specialist that we saw in August.
His current oncologist, and urologist haven't ordered any additional tests. He has bone mets, but no lymph node or organ involvement. It seems to me like they should be watching more carefully?
Please give me any advice you can. I am open to trying whatever! We have 5 children and a beautiful life. We are trying to cope as best we can, but I would like all advice and information you can give. Thanks so much!
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ForJoel
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Also, I purchased the Birm immune booster, but haven't given it to Joel yet. I wondered if this is something that the oncologist would be against? What do you think of the .4 to .7 PSA?
My husband just started taking the industrial strength BIRM yesterday - definitely an uptick in energy - and he already got a boost from taking the regular strength.
Talk to your oncologist , he is the one that I would trust with questions like this. After all anything you do will affect the way he will be able to treat your husband. Or every action there is a Reaction. Fight the good Fight
Oh, ok, that's what I was thinking. We live in Hickory, NC. I bought the Birm that someone talked about on this site last week. I'll double check to make sure I got the right one. I asked the oncologist about it, and he said it was being looked at by the American Cancer Society, but there was no definitive info yet. I asked him if it could be harmful to his treatment and his answer was, "I don't know." I remember the first time we went to Duke, they asked about any natural supplements the patient was taking.
We go back on 12/10, but my big worry is the PSA going up to .7 from .4. ??
don't worry once you go on Zytiga I bet his PSA will go to <.1...you have to be real careful with supplements...I am on Xtandi monotherapy and my PSA was holding at .2 for 18 months...I added Honokiol mostly for the insomnia caused by Xtandi and my PSA jumped to .4....I threw out the Honokiol and my PSA went right down to .2...the Onco's at the Mayo Clinic told me to throw out all my supplements, not only do they not work but they interfere with the drugs taken for PCa
Does he have many bone metastases? If he does perhaps you should explore the possibility of treating him with Xofigo, radioactive material to treat the bone metastases. Once he starts Zytiga he will not be able to have Xofigo until he has to stop Zytiga. It is not the standard of care that in his case will be chemo or Zytiga but since he have had this significant problem with the bone metastasis it could be something to ask the doctors and see what they have to say.
Your sentence in the next-to-last paragraph echos my experience: "His current oncologist, and urologist haven't ordered any additional tests." It is the same for me. It wasn't until I went to a urinary oncologist at a major cancer research center that I got the tests I needed to help determine the next action to be taken. You are doing the right thing.
With only bone mets (confirmed by PET with Axumin?) this is actionable, in my non-medical opinion.
I am on BIRM for almost a a year and my PSA keeps around 0.6-0.7, but the Inmunomodulator sold by Amazon is for prophylaxis. The real ones is being sold through BIRM website
I have similar problem my local MO is not a PC specialist so I need to get back to MD Anderson I have not been there for 2 years. My PSA is .6 and it has been on slow rise for the last year.
My MO wants to see me when my PSA reaches 2.0 and that feels a little high for me.
My heart goes out to you and Joel ... I pray for the Lord to hold you both close, give you strength, comfort, reassurance and direction as you try to discern and follow the right path for Joel....You have come to the right place for advice, these men are wonderfully compassionate and amazingly knowledgeable and ready to share. Blessings and Hugs.
I’m right around your husbands age, I was diagnosed almost 5 years ago, Stage 4 Gleason 9. I had multiple bone Mets including my spine and pelvis along with mets to several lymph nodes. Feel free to click on my profile to see what I’ve done. Currently my PSA is undetectable and scans show no active disease. I’m not cured but have managed to beat it into dormancy.
It is a good idea to run any supplements by your PCa medonc, i have been told by some very good docs to avoid some supplements that I thought would be helpful, they were either not good for me or could fuel my cancer. I’m not saying this is the case with BIRM, I know there’s guys who swear by it, just good to run everything by your doctor.
Hi, who are you seeing at Duke? My hubby goes there as well. He's seeing McNamara. She's a medical oncologist specializing in PCa.
FYI, Duke was ranked #35 nationally for cancer care (health.usnews.com/best-hosp..., so don't always buy into the hype that is Duke. What dings them in the survey is "Reputation with physicians in specialty (% of cancer specialists responding to surveys in 2016, 2017 and 2018 who named hospital as among best for very challenging patients.)" Duke follows a more "standard of care" policy than some more cutting-edge places like Cleveland Clinic; they will not promote something that is not research-based. If there's no study that backs something up, they will not claim something is either good or bad.
However, you MUST run by everything you take that is not standard of care by your medical oncologist because in some cases it's possible that they know something is a problem. (E.g., no St. John's Wort with Zytiga because it makes Z less effective; don't take something else that is metastasized through the kidney as one could go into kidney failure; etc.)
I'm not saying don't go to Duke - you DO need to get a medical oncologist who knows PCa, and they have those (don't know what they have in Charlotte, but I suspect Duke will be better than Charlotte). I was simply saying that they are not going to provide advice on whether or not an alternative treatment will work unless that treatment has had a research study. And, you should always tell your medical oncologist if you are trying alternative treatments to make sure they know what you're doing and can warn you about known adverse effects, if any.
You've come to the right place ForJoel. Lots of top notch information here. Great guys with lots of compassion. 5 children? If you don't mind what's their ages? Must be hard on you with keeping your sanity. But believe me, God is on your side. Keep the faith....
Welcome ForJoel,,,, I am sorry that you are here for his suffering. Much to be done however...... he can be treated and get out of that pain zone... members have overcome the same.....He shall also.. with your love and support he can do as well as anyone. That spinal problem is what bothers men. Hope , prayers and healing sent your way ..God Bless
Another note - I think that once he starts the Zytiga, it will really help him. That helped a lot with my husband's bone pain. That is my hope for you and Joel.
If/when you come to Duke and would like to get together, perhaps my husband and I can meet you for coffee or something after before you drive back home. I know it can be overwhelming, though, and maybe you don't want to have to talk to someone you don't know after your first visit, but I'm happy to offer it. PM me directly if you'd like to do it and we can go from there. Hugs to you and to Joel.
He didn't, they did surgery on his back to remove some of the lesions and reduce the pressure on his spinal cord that was making him lose his ability to walk.
My name is Dominick and am usually on the NTPC support group.
I think that a strategy to eliminate the bone mets should be considered.
Zometa would be a drug of choice as it will reduce or remove them.
Be aware that Zometa has cetain side effects so question the doctor about how he feels regarding the risk /benefit.
Yes Duke is a center of excellence but thats based on their validated successes.
Query those re: your husbands state right now. Other institutions dont have these so its an advantage you have for you to use.Ask questions no matter how silly,stupid,nonsensical and dont let them sell you a bill of goods.
Sorry to hear of your husband's advanced state. Your first goal should be to find a prostate specific oncologist that you and your husband trust. Your husband needs someone who sees advanced cases all day, every day, and has the clinical experience to know what to do and what not to do to avoid wasting his precious time. Possibly discontinuing the Casodex will bring down his psa, but adding the Zytiga will bring it back down assuming he responds to it. Good luck, and please focus first on finding a PCA doc you like and trust vs finding supplements!
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