Jim and Karen Marie and I were so sorry to hear about your present situation. Please know that we will keep you both in our thoughts and prayers. You two mean so much to us. Jim and Marie...
Worried guy, Wampuscats will be there Thursday am and leave on Sunday. We will have on little rv. Marie and Jim...
Sonny, THAT'S AWESOME! If we didn't have forty people coming to my house on the 22nd, we'd drive the 6 hours to help you eat the fish your gonna catch! BOTH OF YOU HAVE A GREAT TIME! Marie and Jim...
Hi Mel, That sounds like good news. We're following you journey closely. KWON wants me to have another ç11 in April when PSA rises to over 3. (it was 2 on Jan 19) Looks like you're enjoying...
NIH does a great job! I completed a two year trial this past August, which included prostvac and xtandi. Yes, all travel is covered full and $50 toward your choice of hotel. Each month I chose to fly...
Cincy, One thing came to mind since our email...Though it would be great to get the scans now with the PSA at its high point, it wouldn't hurt to get the lupron to get through the holidays. Just get...
Jen, There are a few more Henry Ford alumni here too. Sonny3 from FL, Compiler in Michigan, and us. We traveled from Central IL and spent a week at "Hotel Henry Ford" Dr. Peabody was our surgeon and...
Hello Jen, Like others have said, sorry you have to join this crummy club, but these folks have been a great source of support and knowledge for my DH and me! It was 4years ago this month when Jims...
Hi Cincy12, Welcome from another caretaker. My dh, Jim, is in somewhat the same position as yours..failed surgery in 2011 with PSA stil over 6 three months post-op. He went right on to Lupron and...
Hi Mike, Sorry you have to be dealing with this. After hubbies surgery in 2011the PSA was over 6 three months post op. Really hoping its a mistake. You're a young guy and you may wish to pursue some...
Thanks for the replies. . @Tony, Very interested in your experience with SNLD. Not many postings here about it. Lots more happening across the pond with LN surgery. Our email is active if you click...
@Allen, I wondered about the dye also. Kwon says he/they(Mayo) always take 30 LN during surgery. He said he gets alot of Henry Ford patients with leftover +LN. I know Compiler saw him, but that not...
In preparation to the conclusion of our long extended trial at NIH , Marie and I decided to get yet another 2nd opinion before simply going back on lupron. That led us to Dr. Kwon at Mayo (thanks to...
Enjoy! Our 40th happens Dec 28!...
@NataBela, Sorry i don't have time right now for a long response. Your post resonated with me on so many levels. My DH has been to NIH and on the Xtandi also. With encouragement from guys like Gunner...
This is not a death sentence, although it is a shocker. I experienced the same back in 2011 and I plan on living another 10 years, maybe more. What's hard is that no one has a good explanation other...
Gunner, Truly great news for you! And YES, an inspiration to many of your fellow brethren. So much so that Jim has an Appt in a few weeks with Dr. Kwon! Marie and Jim...
Thanks Cicero, I don't know how we missed that video.. it's long but reiterates what we beleive. Years of hormone therapy, withing to become castrate resistant makes NO sense! Jim and Marie...
Next question..do you become castrate resistant on Casodex since testosterone is NOT suppressed but on blocked from the PC cells? There's got to be reason doctors don't prescribe it as a monotherapy....
JD, We "second" what SteelGuy says about Prostate Oncology Specialists. Also, Jim felt sore in the arse for 3- 4 days. The side effects snuck up slowly, probably month 4. wampuscats, Jim and Marie...
Just wondering if anyone here has used Casodex instead of Lupron, longterm, to control rising PSA in non-metastatic setting? What would be the harm or reason not to try? Jim and a couple others here...
Hello Dawn, Hopefully the Smart Ones like Tall Allen and Redwing can elaborate on this better than i can. JIm was on Xtandi (monotherapy, w/o Lupron) for 3 months as part of a clinical trial at...
Go tiger!!! Wishing you continuous good health. Jim and marie...
Awesome news, Jeff! Jim and Marie...
Hi pjr, I tend to agree with BigMac post above and can only add that hubby had the Prostvac vaccine (different trial) over a year ago with NCI and Gulley and Madan watching over and they are awesome....
Well, now that GFMPH is finally (un)officially over, we must add our official THANKS PAT AND JEFF!! You are awesome hosts. We had a blast while there and enjoyed every minute and have vicariously...
Micah68, My only suggestion would be something like Redwing has done with Gleason 9 Crew?? http://www.healingwell.com/community/default.aspx?f=35&m=2863652 wampuscats...
Yup. pT3b with a bonus of N1 Trying everything and anything that might help....
Hello MyHero, So sorry to hear that your father is feeling so bad. We can testify to Enzalutamide side effects of Tiredness, weakness and fatigue. Also the lack of appetite. Jim has been in a...
We can't wait! This will be #7 for us. JI'm and Marie...
That's a great April drop, Mel. We'll report back next week-Jim will be in Bethesda Tuesday, 7th. Hope its warming up in MI too. Jim and Marie...
That is amazing news, Sonny! What is Sherry feeding you? :turn:...
Yup, Chappy. Jim had an appt. with his GP not long after his diagnosis and she gave him prescription for and antidepressant and told him to get a fluffy frappe coffee drink everyday to lift his...
Which side of a chicken has the most feathers? the outside!!...
Hey Mel, You and Jim need to talk--We will also be looking into radiating the lymph nodes this summer. Need to find out who is on your short list. Jims March PSA is 0.08 and Testosterone is a...
Hi Dyank, This was actually a different trial than the DCFBC scan. Jim had DCFBC in December when his psa was over 7 and it picked up two lymph nodes. This scan..really 3 MRI scans, taken over 3 days...
CELEBRATE!!!!...
Thanks Everyone! @Allen- Actually the PSA would've been .08 and that's some pretty good imaging! They previously saw 2 enlarged lymph nodes (traditional CT) when the PSA was closer to 7. I've been...
Whoa Sonny! We were typing our good news at the same time as your good news!! That IS G R E A T News! I think we'll celebrate that Bonus Day with you and Sherry! Are you still lined up for the NIH...
My beginnings were not too common if not frightening—Diagnosed in May 2011 with a Gleason 7, we chose DaVinci surgery for our treatment. All seemed hopeful until the pathology which indicated SV...
Hi luvtotravel, Persistent PSA happened to us too. My hubby was 63 at surgery and had a positive lymph node. Like Tall Allen says, "Don't wait til it's too late." Your husband is young "Prostate...
Such good news !! Jim and Marie...
Currently reading "LIke a Tramp, Like a Pilgrim: On foot, Across Europe to Rome " -- recounts Harry Bucknall's joyful journey on foot from Canterbury to Rome, interjecting interesting history along...
Yes, Smurfine, that's correct. The original trial called for 3 months of Xtandi along with the immunotherapy injections. His PSA stayed low for about 6 months . It was difficult watching the PSA rise...
HI Smurfine, Jim has the load of side effects from Xtandi but its doing the job on his PSA so he tend not to complain too much. I make him eat lots of ice cream to prevent the weight loss. Have you...
Thinking of you on this chilly Midwest morning. Spring is just around the corner. Jim and Marie...
Jim has just started his second round of Enzalutamide monotherapy (no lupron to confuse the SEs) It seems to be hitting him harder this year than it did last year. Fatigue at times, sore muscles,...
Hey Don hope to see you sometime at nih. Just started a second go round of the (amended) trial you are referring to. In one month my psa went from 7.1 to .45. should be lower in March. Will return...
ZERO is ZERO is Good News!...
Such good news Ray! We are so thrilled for you! Jim and Marie Today is a good day!...