Newbie to this site.: Just found this... - Advanced Prostate...

Advanced Prostate Cancer

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Newbie to this site.

Armywifedublin profile image
16 Replies

Just found this remarkable site but feeling overwhelmed and anxious. Please advise what supplements to start? Husband had surgery Jan 8 we were told with his low PSA 3.2 and gleason score it will be contained nothing to worry about and his age of 53..well that wasnt the case.. We just received the news 2 weeks ago it spread thru the margins and into the pelvic lymphnodes on left, right was clear and seminal vessicles were clear on top of his prostrate had only 20 percent of tumor.. told to return in Feb 21 to repeat PSA, ended up seeing another Dr who noted the makeup of the pathology had cubrifrom architecture which he says now that changed everything we are now a 4x3 not a 3x4, and this is a more aggressive type. We were not told this previously from surgeon at CLeve Clinic. This Dr recomends not waiting two more week to go back to Cleve Clinic for follow up but to start now on Hormone Shots... I also made an appointment with SloanMemorial Kettering to see a DR Dan Danilla Oncologist and they have our slides and all reports.. Also I will add my husband had a bone scan that was negative.. Any advice would be greatly appreciated. Along with ideas of supplements to start.. Ive read somewhere about getting a BRCA Test since he is very young. Im so overwhelmed please help.

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Armywifedublin
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16 Replies
Apollo123 profile image
Apollo123

Welcome to the site and I’m sorry about the circumstances that brought you hear. There are many positive stories on here and endless positive advice posts. There are many treatment options available for your husband to live a long long life. It’s a scary scary time when you find out the cancer has spread, you can see my diagnosis if you click on my name above. I spoke to a fellow prostate cancer patient who told me I won the lottery the day I found the cancer as I could have found it at a time when it would have been much harder to treat. Stay positive immerse yourself in available treatments in order to educate your yourself about your options. If you click on some of my posts there are a list of my supplements I take. My life has changed but it’s more precious now and this site has helped me so much. 👍

Armywifedublin profile image
Armywifedublin in reply toApollo123

I really appreciate the quick response. I just feel so overwhemed. Trying to find the right oncologist since we live in Ohio wasnt sure where to go so started searching.. I pray Im doing the right thing for him. by going to New York or should we fly to California this is where I am struggling..I want the best for him but one that listens.. sorry for rambling on.. im trying to do the research for him. He is overwhelmed right now.

JamesAtlanta profile image
JamesAtlanta

We are glad you found us, too. Lost of insights, experience and support here.

I found beginning to educate yourself is very important. A great resource is a book by Dr. Patrick Walsh entitled Guide to Surviving Prostate Cancer. Make sure you get a current edition so that it contains all the latest treatments. Wish I’d found it earlier in my journey.

Another great resource is a book by Dr. David Servan-Schreiber entitled Anti Cancer: A New Way of Life. This author suffered from brain cancer and researched the role of diet in treating cancer. It is an easy, informative read. And his personal story is inspiring. Both books are available on Amazon.

Please keep us posted on your journey. We are all pulling for you both!

James

Armywifedublin profile image
Armywifedublin in reply toJamesAtlanta

Thank you.. ordering the books..my mind is in over drive with all the info here.. I just hope we are on the right path with heading to New York.

Chiquis profile image
Chiquis

Hi Armywifedublin,

I'm sorry for what you and your husband are going through. This is summary of My husband story, hope it helps. He had a PSA of 8.7 on July 2017 He had the F-18 bone pet/ct scan that was clear. BRACA test.. was negative. Polaris test post Prostatectomy showed that he has intermediate risk, more agressive then average. Axumin scan showed metastasis and 2 lymph nodes in pelvic area. He started ADT September and his PSA dropped to 0.1 by November🙏 He also had his first of 6 Chemotherapy (taxotere) 2 weeks ago. He doesn't take supplements. I make him fresh vegetables juices everyday (he hates them🤗).

I hope your husband will do great on hormone therapy. You are not alone. There's hope. I know it is hard but don't let this bring you down.Take care.

Sincerely,

Erika.

Armywifedublin profile image
Armywifedublin

Thank you!! All the replies mean so much to me. Just a bit overwhelmed.. and so touched..

Praying for everyone...

Overwhelming is an understatement. Our worlds are turned upside down. A lot of adjusting willhappen.he will get thru this hurdle with you by his side. It all boils down to having someone to love and care for us. I’m lucky so is he. My prayer is for those that are alone. Get a puppy. I did that also. , pure love that’s lulu now 16 months. APC is a mad chemistry project .Theyre coming up with new promising drugs. So we need to push this thing down for as long as we can. My grandpa hearn was from Dublin ,they put an O’ in front at Ellis island to mark an Irishman. Hormone needs to be stripped away. What once gave us macho men strength and confidence will now kill us. God Bless!

j-o-h-n profile image
j-o-h-n

to: Armywifedublin

If you're coming to MSKcc in NYC I would suggest seeing a Dr. Michael Morris at the

MSKcc Sidney Kimmel Center for Prostate and Urologic Cancers, located at

353 East 68th Street New York NY 10065, between First and Second Avenues (very close to First Avenue however). Tel. number: 646-497-9068 for New Patient Appointments. Very competent Doctor. Here are two Youtube videos of him:

mskcc.org/videos/hormone-th...

-and-

mskcc.org/videos/radiopharm...

I hope this helps....

Good Luck and Good Health.

j-o-h-n Monday 02/05/2018 12:38 AM EST (The eagles have finally landed)

Armywifedublin profile image
Armywifedublin in reply toj-o-h-n

John,

We are heading to New York Feb 19 and we were hoping for scans to be set up. My husband was just informed that is not the norm it’s a consultation only. We are very frustrated.. feel it’s a waste of time and money to fly for a consult only with no testing.

We are going to Sloane Kettering to see Dr Davilla .. is this the norm. Have you heard where they can advise and you do treatment at home back in Ohio?? Please advise.

Very Frustrsted

j-o-h-n profile image
j-o-h-n in reply toArmywifedublin

To:

Armywifedublin

From what I have experienced Oncologist would never schedule any scans until they've consulted with the patient and reviewed their slides or documentation regarding their Pca. I do not think this is a unique methodology at MSKcc or at any other reputable medical institution.

Now this conjecture on my part but I doubt if they would schedule treatments at other medical institution outside of MSKcc. Unfortunately the medical profession is like all other professions "somebody has to pay for their Mercedes".

My concern for your Husband is that he is treated at one of the best cancer organizations in the U.S. and MSKcc is one of them. If you decide on MSKcc you may want to contact them as see if they can get you discounts at hotels/parking close to their facilities.

I will tell you that they have the greatest staff (doctors and support staff) that I've ever encountered. I sound like a spokesman for them but rest assured I am not.

If you're unhappy with Dr. Davilla, then see my guy Dr. Michael Morris.

Good Luck and Good Health.

j-o-h-n Tuesday 02/06/2018 2:35PM EST

p.s. My ex-wife was from Northeastern Ohio (New Philly/Dover) and long time ago I used to make the drive there in 10 hours. Route 80.

Armywifedublin profile image
Armywifedublin

Dr Dan Davila .. I think that’s his spelling.

DanR3254 profile image
DanR3254

1. Vitamin D3. 10,000 IUs per day. Will need to have his blood calcium checked periodically. See if one of his doctors will contact "Biotics Research" so he can get the drops - 2000 IU per drop with the Bio-D-emulsion forte. Not positive if it still requires a doctor's input, but that was the case when I was using it. Using Vit D3 my doubling time went from 3-4 months down to about 18 months while I looked for trials and to give myself time while hoping for a cure.

2. Sorry to have your husband join the club nobody wants to join. I had similar, but not as wide spread results at 49 - positive margins, escaped capsule, SV involvement, but luckily, no lymph node involvement. Four trials and a 'salvage' surgery later [again with positive margins] my PSA is undetectable.

Oh, Army Retired.

Armywifedublin profile image
Armywifedublin in reply toDanR3254

Husband also Army 32 years retiring in 2 from Columbus Oh

Armywifedublin profile image
Armywifedublin in reply toArmywifedublin

Are you from Ohio?

pjoshea13 profile image
pjoshea13

I wrote a number of posts with titles that begin:

"Foods/Supplements-Vitamins:"

Paste that into the Search area (top-right) & hit Enter.

-Patrick

Armywifedublin profile image
Armywifedublin in reply topjoshea13

Thank you I will!!!

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