Hello all,
I am the wife of a husband with Metastatic Prostate Cancer. Dx at age 53 now almost 61.
My husband has been on Lupron or Degarelix as well as Xgeva for most of these years, after an unsuccessful RP.
We are glad to find this site as well as others to support one another.
I will post his stats at a later posting.
Regards,
BOOGEE
Welcome Your husband is encouraged to join our community.
Hi Darryl,
My husband is much too shy so he asks me to do the research.
We went to an advanced support group for a couple of years however his work schedule changed so when I say (WE) it is always discussed what we talk about on forums between he and I.
Yes he is still employed and doing well.
BOOGEE
I appreciate his work schedule. Indeed, I work too. A very long day, indeed. Support is different than information. As he progresses, connecting with men who share his thoughts, emotions, fears and joys will be just as important as his medical treatment, and, with total respect for you...connecting with other men who share his disease is something that a spouse simply can't replicate. The beauty of this online community is being able to connect 24/7/365 and with us approaching 7,000 active members, there are lots of guys here.
Welcome Boogee,
You and your husband now belong to the forum that no one wishes they had joined. When you post your husband's stats-Gleason score, area(s) of metastasis, PSA, types of scans, etc...-please include clearly what assistance you would like in decisions, questions, etc.
You are not alone. We are here to help.
Nalajrats and pjoshea13 provide info on clinical trials, research papers, supplements, etc. In fact, pjoshea13 has already put out several scientific posts and it's early...we'll look for your next post...
All the best,
Fish
Hi Np,
My husband sees his Oncol. monthly for treatment but if there are any trials that could be suggested we may look into them.
His PSA is on the rise again now at 1.6. Will look at the trials pjoshea 13 and Nalajrats have info on.
Regards,
BOOGEE
Here is a list of clinical trials:
cancer.gov/about-cancer/tre...
If you can update his status--where his metastasis (cancer spread) is in his body, what are his current meds--his PSA is 1.6--not bad at all-----has he had any scans??
Take courage, there are many who have had much higher PSA scores, and still going strong
Hopefully, he is at a center of excellence for prostate cancer--MD Anderson, Mayo clinic, Cleveland Clinic, UCSF, and many others.... where are you located??
Call me Fish....I prefer it to what others call me...LOL...
More info please--your location, cancer location (s), scan results and we'll see what we can do...
Fish
Hello Fish,
We live in the Bay Area and see Dr. Li at El Camino Cancer Center
We are happy with the treatment plan we have with Dr, Li.
When Roland needs radiation we see Dr. Robert Sinha also an excellent Dr.
We have also been to Stanford ( in a study) as well as UCSF years ago.
We get scans now mostly yearly. No soft tissue mets however 1 possible or scarring from his last radiation treatment to rib.
I keep all scans, reports, blood tests etc.
I added a profile with his stats. I don't see it however.
Any suggestions?
BOOGEE
Sounds like you are experienced fighters...if you trust your team, stick with them...I posted a Gallium PSMA list of studies at NCI--if unsure about the rib, you should consider it...there are stereotactic radiation trials at NCI for oligometastatic disease if it comes back positive...you are fighters---suggestion--strategy seems sound--look at what I wrote and keep fighting... the war ain't over...
All the best,
Fish
You are so helpful NP
As I always say--Call me Fish....I prefer it to what others call me...
I try to help....
This is a hell ship...a cruise we got shanghaied onto-- in 18th century, crews that needed sailors would drug them and you would awake on the sailing vessel headed to Shanghai... while none of us were drugged, we sure as heck did not come willingly...
We are in a street fight with the beast... a monster that invades, mutates, is hard to kill... attacking flesh and bone...
The answer--You gotta suck it up and fight with everything you got... read, learn, listen to experienced warriors, know when to stay in the box and when to break out, exercise, if you are fat--get lean and mean... Did I leave anything out??
God help us all in our battles...
Fish
Thanks Fish. I love looking at your posts, Nalakrats and Tall Allen. I am so lucky to have now survived for 17 years with the beast. Obviously, think about it daily. I have really tried to stay lean as possible and stay away from dairy and red meat. Do have 4 mets in my bones but they are not growing very fast. Have just been on 50 mg of Cassodex since psa came back in 2012. My MO has me trying 150 mg of Cassodex to see if we can move psa back down from 1.5. Are you on Lupron or anything else? Do you take supplements?
Thanks so much.
Congratulations on 17 years....you are a warrior... I am on Lupron/Zytiga/Prednisone... I was PC3A at RP and thought it was done--7 months later, I am D2--a 1 cm lesion on my clavicle--just bad luck I guess...anyway, I follow a no dairy, rarely do red meat, mostly organic, farm raised chicken and salmon when I am not doing vegetarian...I do take supplements--D3, Curcumin, and ordering flax seed lignans, MPX-muscadine grape skin extract--also looking at a couple of others....I eat broccoli and tomatoes a couple times a day... and I exercise almost daily... I do intermittent fasting also..
Yes, we all think about it daily... it consumes us physically, mentally, emotionally...the beast...
I has stereotactic radiation to my one lesion within 2 months of diagnosis--we'll see if that helped...
For you, with 4 lesions, you could qualify for the oligometastatic trials at NCI....TA feels it is not proven clinically and more specifically in Prostate Cancer...however, in all cancers, the OS was doubled...
cancer.gov/about-cancer/tre...
and here is some recent info on stereotactic radiation trial:
sciencedaily.com/releases/2...
I would get my PSA to undetectable if you get into a clinical trial for stereotactic radiation, and then do the radiation--hammer the beast...that's what I did...we'll see if it worked--so far so good...I do f/u with RO next month....
All the best,
Fish
Thanks so much Fish. You are so helpful. After reading you guys I think I am very ignorant about this disease. My MO in Denver just retired and we now live in Scottsdale so I do have a "well known" MO at the Mayo Clinic that says I should now do ADT and stop my Cassodex that has worked for the last six years. What is stereotactic radiation? I think I would like to try it?
Sure appreciate your input....
Here is some info on stereotactic radiation:
radiologyinfo.org/en/info.c...
As previously, there is a trial at NCI for this--2 of the locations are in Pittsburgh--one at the center where I went--UPMC and UPCI----Dr. Heron released some initial info on his trial...all good on his trial...the info posted above to you....
BTW, I was totally ignorant about this when I was diagnosed...improved....but still learning...
Whatever you decide....good luck
Fish
BTW, thank you for reading me...I do have my moments...I follow Nalakrats also...
I wish you all the best in your battle...
Some drug trials I am following are TAS3681 and TRC 253--both for wild/mutated AR--prevent castrate resistance, MM 310--what I call "smart" docetaxol--more cancer specific (guided missile) and less random--should be decreased SE, and watching for the development of cyclic peptoids--a way to slow it down, RRX 001--a sensitizer that may make cancer more sensitive to radiation and chemo-- just to name a few, and of course, the NCI Match trial and Checkmate 650...
I pray that we are just a few years away from having Stage 4 be a chronic disease and not a short term death sentence.. My life may be counting on it...
Take care,
Fish
Hi Boogee.
I too am glad you have found this site. I remember how happy I was two years ago - or is it three now? - when I found this site. My husband didn't like posting in forums so I did it for the two of us. It is a wonderful group.
Welcome.
Mel.
Hi Melanie,
Glad to meet another wife of a warrior.
It's all about staying positive and living each day to the fullest.
My husband is the positive one and I do all the research. We are a team however.
Keep up the fight.
BOOGEE
Just Dx yesterday
Know anyone who radiates the prostate for those (me) who are metastatic at Dx.
5 years today from dx
Undetectable 5 years and 2 months after DX of Metastatic PC w/ a PSA of 209
