Beth - I just saw your post and am so sorry for your loss. But as I've been telling everyone, how lucky were we to have found our soulmates. I don't know how long you and Gary have been together, but...
Hope you're getting some rest and Gary is cooperating. I know what you're going through. If Gary is like Dan, he hasn't been his old self for a while. I remember last summer hearing him laugh and...
Oh Beth, Gary is sounding a lot like Dan in his last days. He made it up the stairs the afternoon before he passed, but throughout the night when he was up, he needed help to get to his feet and to...
Beth - Sorry to hear you're having such a difficult time. We were just discussing tonight how glad we were that Dan was coherent to the end. I made him do the jumbles out of the newspaper because I...
Since Dan's treatments stopped at the end of May, we along with family members were able to take a week-long Alaskan cruise, and he was able to play a couple weeks of golf; but his condition...
Dan had liver mets biopsied in January at MD Anderson, but they didn't test for MSI-H at the time. Testing is being done now, so we have our fingers crossed for that. Congratulations on starting...
Beth - I wasn't sure if you'd seen this Keytruda trial which is recruiting at various locations. https://clinicaltrials.gov/ct2/show/study/NCT02628067?show_locs=Y#locn I've only been able to leave a...
TA - Do you know of any connection between melanoma and prostate cancer? Dan had a malignant melanoma removed about 4 years ago, and his brother who was diagnosed with a brain tumor almost 15 years...
Beth - I did contact Houston about the LU177 trial, but the cost was prohibitive. I contacted Dr. Tagawa in May, and he was filling the second group for his LU177 Phase I trial, with a third group...
TA - We are in St. Louis. I saw the trial at Northwestern but thought it was for liver cancer rather than mets from other cancer in the liver. I 'll definitely call them tomorrow. I also have a...
TA - Thanks for the recommendation. I've done some reading on the microspheres; do you know whether it is approved for prostate cancer liver mets? Everton - Dan failed on taxotere after three...
Dan just finished 6 cycles of Etoposide/Carboplatin and his numbers have risen since the fourth treatment. New scans showed an increase in number and size of liver mets. Has anyone had any success at...
Tomorrow with be the first day of cycle six of Etoposide/Carboplatin for Dan. His PSA had dropped to 3.3 but last week rose to 3.7. We're not sure what the MO will be recommending, and I've been...
I'm so sorry to hear the latest news. Sure hope that grandbaby gets here quickly. Nothing helps low spirits like a new baby. I hope you both can be a peace with your decisions. Mary...
WifeofPie - I can totally relate to the shock of the diagnosis. Give it some time. Maybe your hubby won't have to have long-term treatment and this will just be a blip in the scheme of things. I'm...
Dan was also diagnosed with extensive liver mets in January. He has been on etoposide/carboplatin beginning 2/6 and the latest scans showed the liver mets were stable, but new mets on his iliac. All...
Just my two cents - Possibly because Dan's prognosis is so dire, the effects of Lupron have been the least of our concerns. I understand the frustrations when you can envision a lengthy future, but...
Great! Love hearing those good numbers. Mary...
JNF - I don't know that there will ever be a time that Dan's not receiving some kind of chemo. None of the other treatments remained effective after 3 cycles, but maybe etoposide/carboplatin will be...
After a year, Dan is finally considering getting a port, but if it interferes with golf it's a no-go. Does anyone have any experience with this? Thanks for any advice. As an update - he's been doing...
Good luck with the Xtandi. Dan hasn't had any side effects from it at all. We're not sure how well it's working, but it can't hurt. Hope you continue feeling well and that PSA takes a big drop. Mary...
Bolo - Thanks. As long as he feels well, I'm smiling. Today's a good day. Mary...
Beth - Thanks for that info. Dan was on Prednisone and has just tapered off. I have read about cachexia and it's pretty scary. Dan is a big guy, 6'5"- 303lbs when diagnosed and is down to 246; so...
After Dan's PSA began rising on Jevtana and Zytiga, his MO recommended new scans. New scans showed bone mets stable, but extensive new mets in his liver. MO then wanted a biopsy and possible change...
Not sure if it's a result of Claritin D or not, but Dan has had no bone pain with Neulasta either. Hope that continues. Mary...
Mark - Just curious, were you told to take Claritin D with the Neulasta? When Dan was getting Jevtana, he had an on-body pack and was told to take Claritin D for five days. He had no side-effects at...
Sorry to learn of your current situation. We are also fight a very aggressive PC, and I can certainly relate to the despair you're feeling. Hoping for peace for both of you. Mary...
Thanks for the encouraging words. john16 - Dan's being treated at the Pratt Cancer Center at Mercy Hospital in St. Louis. He's also seen docs from Vanderbilt, Siteman at Barnes Wash U, and Mayo....
Great news! Keep doing whatever you're doing. I love seeing a good report. Mary...
Sorry to hear about your diagnosis. We were in your spot a year ago, but surgery was not an option. I can't make any recommendations about treatment, but wish you best of luck in however you choose...
Sorry for your diagnosis, and good luck to you in your choice of treatment . We were in your spot last year. We have learned that what works for one doesn't work for everyone. Everyone's PC is...
I haven't posted lately, but do check the board a couple times a week and hope everyone is doing well. Overall Dan has been doing really well and has already outlived the expiration date he was given...
Congratulations on the great numbers! I love seeing high Gleason guys get encouraging reports. Hope it continues for you. Mary...
Hi Sallyyy - Can't provide much advice, only support. Everyone seems to respond differently to treatments. My husband failed Taxotere and is currently on Jevtana. This is known to drop the WBC, so at...
When Dan had the C11 PET scan, UHC was billed $7417 and paid $6897. We had already met our OOP max so we paid nothing. I was surprised that the contract rate with Mayo on everything was around 90% of...
Congratulations! Hope your excellent results continue. Mary...
Dan - We have United Healthcare through the APWU, I'm a postal clerk. It's a crazy "consumer-driven plan" that has a $3600 deductible, but they put $2400 in an HSA for you. The out-of-pocket max is...
Thanks for all the great info. We are blessed to have good insurance through my employer, and we hit our out-of-pocket max in April, so we haven't had to worry about the costs of treatment. I checked...
Thanks to you all for the encouraging and helpful replies. We know we are dealing with a different animal with the aggressiveness of Dan's cancer, but because he's suffered few side-effects with his...
At today's visit with MO, he suggested Dan begin taking Zytiga along with Jevtana. His PSA the day of his first Jevtana treatment was 75, two weeks later 65, and the day of his second treatment 117....
Congratulations! We like seeing those numbers. Keep it up. Mary...
As you can see from my signature, Dan received RT when we only knew his nodes were involved. When he was scanned after treatment, the bone mets were found. At three months he was already hormone...
Use those three weeks to recuperate. Dan has had the same fatigue. I'm blaming it on the Lupron, although it did hit him harder with each treatment. He only had three full treatments, and you've been...
It's been a busy month. At some point in the past couple months, I had contacted Dr. Kwon's office to schedule an appointment. I sent records and was told to contact them when he finished treatment....
So sorry to hear about the xtandi failure and new mets. Being blindsided like that is the worst. Will he be doing weekly taxotere during radiation or full dose? We're in a similar situation with...
I'm with you, Rosewood. We know how the statistics say this is going to go, but we can hope that one or more of the treatments can keep things in check for a while. Good luck in your choice of...
We have contacted the participating researcher at the cancer center where Dan's being treated. She was supposed to talk with Dan's MO this week....
Last week when we saw the MO before Dan's 4th taxotere treatment, he said because his PSA had doubled between weeks 2 and 3 after each treatment, we should stop the taxotere. Because the Keytruda...
Congratulations! What wonderful news! It provides much needed encouragement as Dan's PSA continues to rise throughout taxotere treatments. I showed him your history of treatments just today so he'd...
BJC, Siteman and Wash U Med School are all intertwined. Dan's current oncologist, Dr Hu, is at Pratt Cancer Center at Mercy Hospital, but we were referred to Dr. Bruce Roth at Siteman when we went to...