Thanks Steve. Regarding my insurance question: The second series of Pluvicto is not FDA approved yet, according to the nurse who coordinates the UVA program. Second series is still in clinical...
Steve, or anyone who has had a second series of Pluvicto, We have a couple of questions for you as Denny is being considered for a second series of Pluvicto. (PSA rising and scans show new growth....
Thanks for the update Steve. You're about a year ahead of us and providing hope for an effective second round of Pluvicto for hubby. Please keep us posted about your participation in the clinical...
Steve, How are you doing now that you've completed your last Pluvicto treatments? Are you feeling well? We're waiting to see if Denny will receive another round from UVA. Previous treatments ended in...
Your MO hit the disease with chemo early, so cases may not be comparable. DH had surgery, then radiation, then Lupron. The ADT gave him 5 years before he became castrate resistant (he continues to...
I just say, "thank you for taking care of me today". Usually, the reply is something like, "you're welcome--we're going to take good care of you". Then, lights out....
Truly awesome! Congratulations-spreading hope to others!...
Wow! You have had a great response and it encourages us more than you can know!...
Thanks guys. We've received so much encouragement from people on this site, that we like to share some, too. Sr Sailor, DH is on Lupron for life, but no other meds for now. He is mildly anemic and...
Pluvicto was completed in August with a PSA reading of 13.9 six weeks later (originally 194 last December). Lab work this week, PSA dropped to 10. Scans showed some hot spots remained in ribs and...
10 years on Lupron (and other treatments) and lost the hair on my legs, underarms, upper arms, and chest. The best news (besides that I'm still here) is that BO is not a problem anymore....
DH had a reverse shoulder replacement while being on Lupron for 3 + years with a relatively easy recovery. The Lupron didn't enter into the equation. If you are not able to sleep well, that affects...
Great news! DH just finished treatment #6 yesterday. No scans yet, but sure hoping to have similar results. Your spread hope today! Keep us updated on your progress....
[i]"French kissing a skunk"--hope to pass on that! Get well!...
Hubby had pelvic floor PT with a specialist therapist. Unfortunately, it didn't help much. He had an AUS and it did the trick for about 7-8 years. The urologist can do a new cuff when it stops...
After 5th Pluvicto infusion hubby's PSA has dropped about 92% from 194 to 16.7. One more infusion on August 17. He's feeling pretty good and we're optimistic that he's still kicking the can down the...
If you are in Virginia, consider Dr. Robert Hong at Virginia Hospital Center in Arlington. He is terrific!...
Our sincere sympathies on the loss of your husband. Gone too soon. Please take care of yourself after caring for him throughout his journey. Beth...
Such good news! So glad to hear it. You're spreading hope!...
It fascinates me how life is all about perception. A PSA of 147 would drive most guys over the edge, but based on your history, it gives such hope! Congratulations! DH 5th infusion is next week. PSA...
Our sympathies to you and your family. Your message of hope rings through and is so important! It is indeed a "marathon and not a sprint" that our guys are running. Peace to you and yours....
Wings, here's treatment history. He's tried a little of everything. He set goals along the way: 50th anniversary, beating MO's estimate, turning 75. Now he's looking forward to turning 80. Big...
Drug shortages are a big concern. In talking with the nurse coordinator of the Pluvicto program DH is enrolled in, she said that due to the Pluvicto shortage, some patients progressed too rapidly...
Beat the first MO's estimate of living 2-10 years and still plugging along! Our world was rocked with DH's diagnosis 10 years ago, and he has been a trooper through a myriad of treatments. Some days...
Wishing you success with the next round of Pluvicto. Good news! DH has had 3 of 6 scheduled treatments so far with success, and we had wondered if additional treatments would be effective (and...
Beautifully said. May you both find peace in each day. Blessings to you and Jim....
Beautifully written, I agree with the roller coaster description. And I hate roller coasters....
Denny's third infusion of Pluvicto is scheduled for April 7. He has had a 75% decrease in PSA (from 194 down to 49). We are so hopeful that this is working...and so grateful he is able to get the...
Life changing procedure if your incontinence is significant. It is outpatient surgery and is activated after about 6 week recovery....
DH had Provenge in June/July, 2020. As you probably know, you can't use PSA as an indication of success. PSA increased significantly before decreasing--dead cancer cells sloughing off into...
Good news to share: PSA drop from 194 to 137 three weeks after first Pluvicto treatment on December 21 . Victories have been a bit hard to come by lately, so we are savoring this one. Platelets are a...
DH had the AMS 800 installed 8 1/2 years ago. It was life changing surgery. While he has some leakage now when he is very active, his urologist feels like a revision is not wise now- PSA is very...
Our sincere condolences. What a journey you've been through. Your dad put up quite the fight. I hope you find peace knowing you did everything possible to provide healing and comfort to your hero....
Our dog spends lots of time sleeping on hubby's lap in the recliner. We know our dog will not understand why she isn't allowed on DH's lap for the first three days after treatment, but we were...
9 1/2--still making plans for the future...
While we never met Sonny, we did speak on the phone. You could never meet a more encouraging person. He believed in living every day to the fullest. Our sympathies to his family and friends....
Congratulations on your test results AND those fantastic photos! Just awesome!...
Sounds familiar! Denny was able to talk, but says he felt "foggy". Denny is having a weaker dose weekly (3 infusions, then a week off) for a total of 18 infusions planned. He's having the weaker dose...
Well, in the teaching appointment we were told an allergic reaction to Taxotere is very rare, but it happened within the first few minutes of Denny's first infusion yesterday. He said he was just...
Glad we persisted and got the PSMA PET scan. Maybe the Axumin might have been as good, but the MO said the information was exactly what he needed to make decisions about the next move. The scan...
Thanks for everyone's input. It took some doing, but we were able to get the PSMA PET scan scheduled for June 21 in Annandale, VA....
Thanks for your input. We requested the scheduler attempt to find the PSMA Pet scan at another facility. The difference in scans may not show significance in results. The MO was interested in finding...
So frustrated! MO ordered PSMA PET scan and after a week waiting for an appointment we received a call that the local imaging center had scheduled a Axumin Scan for next Tuesday. The PSMA scan is not...
This sounds like good news to us! Denny's MO was quite excited to find ATM mutations for which Lynparza was indicated. So he's on Lynparza now after Xtandi losing effectiveness. It also is used for...
[i]"Isn’t life about a collection of treasured moments, memories, and experiences? If we continue to embrace and celebrate each day to the best of our ability and with as much laughter, happiness,...
Jeff, We found this group after my husband's surgery more than 8 years ago, and continue to be amazed at how helpful, knowledgeable and supportive the people here are. Total strangers helping each...
Advocacy is so important. So is communication. It has been difficult during Covid restrictions-even now, offices don't want "visitors". We are basically rule followers, but sometimes you have to...
Dr. suggested a recumbent bike for my husband after his AUS surgery. He opted for a split seat on his regular bike instead. He's had his AUS for 7 years and it continues to work for him. There's...
Done. Walgreens yesterday, no waiting, no fuss-just sign paper confirming immunocompromised. No side effects except arm is a little tender....
No real wisdom here, but denial sometimes helps us get through stuff until you can (or have to) deal with it. Hope is also a very powerful thing. I learned through dealing with my mother's...