Hello all - Hard to believe that Steve finished his SBRT treatments one year ago. PSA continues to decline and is now .78. He's not winning any races to undetectable, and maybe he'll never get there,...
Halbert - Just catching up on some forum posts. Congrats on the new job! Is Pat also going to be job hunting in the Philly area or has she already found something? Suz...
Susan - We send our most sincere condolences to you and your family. Don was an amazing example of a life well-lived and a battle well-fought. He was very blessed to have you by his side. We pray...
Thx you for the response, TA. We always trust what you share with us. I would say Steve's results fall in the "slow" category so far. I think we were both delusional about getting treated, getting...
I did a forum search on this general topic of "how long to reach nadir after EBT" and found some confusing info. Understanding that everyone is different, is there a general guideline after each type...
Steve got PSA results today. It is still declining, but at a snail's pace. RO does not give much feedback. Only comment we get is "another drop in PSA". Steve is doing pretty good with the...
Lots of other good "venting" here. It's comforting to see that we are not the only ones who are bewildered by the decisions the insurance companies make. When Steve was denied coverage for SBRT, but...
Some who have been around for a while may recall that we had a heck of a time getting Steve approved for SBRT at the Cleveland Clinic last year. After we were denied coverage for this TX, our RO...
Beth - Sending hugs and prayers your & Gary's way. Thank you for the many times you "held my hand" as we struggled with Steve's DX and TX. Please reach out any time via my email. Suz...
Halbert - wishing you and Pat the best in this new adventure! I'm only on the forum once in a blue moon these days, but will try to keep tabs on this topic. Sorry you are not attending GFMPH in...
And he even quotes Shakespeare sonnets! Amazing! I'm not on the forum very often these days, but I'm so glad I saw this thread! It was just over a year ago when we got Steve's dx. To say I felt like...
Newest dept at the Cleveland Clinic is Functional Medicine headed by Dr Mark Hyman. His latest book is "Eat Fat Get Thin" -> avocado & coconut oil are good, whole wheat bread is bad. He's written 20+...
That is AWESOME news! So happy for you and Connie. Steve's next blood test is June 1. We are both getting anxious. Guess we should get used to it though.......
So glad that everyone had a great time! We were sorry to miss this one, but look forward to September in Rochester. Suz and Steve...
Dear Barb - We are so very sorry for your loss and pray that time and cherished memories brings you comfort and peace. Thank you for all you have done, and continue to do, in this war we are all...
Thanks for your post and for sharing this great perspective. We all need reminding now and again and you do that so well! Good luck with your spring soccer season! Suz...
CONGRATULATIONS! Such good news that you are having no SEs! Enjoy the veggie burger! Goes down easier with a beer....
Jay - So sorry to read that your insurance denied the CT scan! Those kind of things get my blood boiling... My husband had a similar DX to yours, although a little lower on the Gleason scales (G7...
Steve's dad had the biopsies today for the lesions on his liver. The preliminary report is VERY encouraging. Will talk with Steve's mom again tonight when the dust settles a bit more, but she...
Beth - You truly do live 1 Corintians 13 every single day and your posts reflect it. You have such tremendous patience and kindness. You set an example that I envy and try to emulate It is an honor...
Jack - you are so right about that! I lost my folks when they were in their mid-70s. It is a blessing that Steve has both of his parents, my sons have grandparents and my grandson has...
Thx you all so much for your good thoughts and support. It means a lot to us. I think Steve is taking this so hard because #1, it's his dad! and #2, he sees this as his own possible future. But that...
Dear Sonny - We send you our very best and will keep you in our thoughts and prayers as you enter this next phase of your journey. We both enjoyed meeting you last Sept and Steve especially benefited...
Hi all - I haven't posted for a bit, but I know Steve has been on the forum recently. His dad has been battling PCa for 20+ years. He was DX'd around the age of 65 (same age as Steve), and had...
Hi halbert! Hope you and Pat are doing well and enjoying Valentine's Day. We are buried in snow here in Cleveland with frigid temps. Good day to share some chocolate covered strawberries and watch...
We are on a PPO plan but both have the same PCP. (We pretty much think along the same lines as Andrew.) We rarely see her for anything more than annual physicals, but every specialist we see...
We're not old timers, but still wanted to extend our very sincere sympathy to you on the loss of your wife. We just had a member of our extended family dx'd with Parkinson's and know how...
rainwest and 0311 - Wishing you both well! It's great that you are both on a similar timing and can compare notes and provide support....
Hi Prato - Steve is doing well and sends his best. Got his first post-treatment PSA and it was down 40% to 1.30. Hoping for an even bigger drop when next test is done in 3-4 months. You'll have to...
Hi Rick B - I'll try to answer all your questions here 1) Cleveland Clinic uses a Varian Edge machine to deliver SBRT (I think it's the same one Henry Ford uses coincidently.) 2) I'd have to pull out...
To the OP - just saw this post. If you have any questions re SBRT at the Cleveland Clinic, please feel free to get in touch. We were happy with treatment & would recommend Kevin Stephans. The other...
You will be in our prayers. Stay strong! Suz...
Interesting thread Prato. I know there have been comments made at the Cleveland Clinic's Wellness Center that programs like Ornish and Esselstyn don't get the press and recognition they deserve due...
Steve is 2 months post SBRT and PSA is down to 1.30, a 40% decrease. The percent free also decreased though, down to 12%. We got the results thru a patient portal, so sent a message to the RO...
I took a nutrition class a few years ago and the recommendations regarding flax were: 1). Toast it or use it in recipes where it will be cooked or baked as raw flax seed can have toxins. Heating it...
Hi Prato! Sounds like you are doing really well! Just wanted to add a few comments since this is a topic where I think I can add some value to the discussion. First, let me confess that I have not...
Todd - Steve went to a Prostate Partners meeting at the Gathering Place tonight. Eric Klein, chair of the Glickman Urology dept at the Clinic, was the speaker. Sounds like there are some amazing...
Cleveland Clinic used the Varian Edge for Steve's SBRT. He had fiducials and tattoos and also a mold for the lower half of his body. All of these were used to align his body with the pre-planning...
Hi Todd - I think we corresponded a bit in the fall and if I recall correctly, you are a patient of Dr Fareed's and also know my CNP friend who works with him (Michele Angie). I'm so sorry that you...
A very happy birthday to a man who has been blessed with an amazing daughter! We wish him many, many more!!! Suz & Steve...
Armed with knowledge from this forum, I was often "accused" of being a medical professional during our interview visits. LOL It may have been coincidence, but the only docs we seriously considered...
We highly recommend Kevin Stephans at the Cleveland Clinic for SBRT. Steve finished a course of 6 treatments about a month ago. (We had 6 instead of the usual 5 due to idiotic insurance restrictions,...
As a former Cavs player, news of Hot Rod's illness has been getting a lot of local press all week long, and especially today with his passing. Even some of the newscasters expressed surprise at how...
TA - The Clinic told us about 20% have fatigue during the treatment phase. They consider it an acute SE. Steve is already regaining some energy and actually went to work today! We feel confident that...
Steve's sixth, and FINAL, SBRT treatment was today. Seemed like we would never be at this point and suddenly we are. Steve is dealing with a lot of SEs (fatigue, dizziness, urinary and bowel urgency,...
Steve had his fifth treatment today. The sixth and final treatment is scheduled for Monday morning. So far, we have not had any serious problems, but this also has not been a walk in the park. Most...
We both read Walsh's book and found it VERY helpful in those first few weeks/months after Steve was diagnosed. Someone termed it a primer and I feel that is a good description. At the very least it...
Just want to echo the advice about contacting Dr Epstein at JH directly. Steve talked with him twice. Both times he was very generous with his time. He clearly explained why his pathology report...
Allison - I'm so sorry that you need to be here. However, as I'm sure you've discovered, this forum really is a great "base camp" for PCa info. Did the Uro suggest getting an MRI first? That is often...
That is GREAT news, halbert! We are very happy for you and hope all future check ups are as stellar as this one. Suz and Steve...