Hi Mumbo Thanks for prompt reply and encouragement. Treatments have been as you described. 15 minutes at most from when I walk in to when I walk out. Drop trou and drawers, position modesty towel,...
Thanks again for all the encouragement and information. Just got a call from Johns Hopkins with results of genetic testing of saliva. They found no genetic defects so no other family members are...
Haven't posted or visited in a while, in waiting mode. Fiducial markers placed two weeks ago, had CT last week for simulation, they are preparing treatment plan now and expect to hear back in a week...
Hi Redwing Thanks for the info and encouragement. I agree with your concern regarding our tumors not putting out much if any PSA and therefore the magnitude of the threat going unrecognized. I am not...
Hi Mack. I don't have experience to share but suggest you start a new topic. See Mumbo's recommendation to me a few posts up in this regard. I did so and have gotten many helpful replies. Best wishes....
Mumbo Thanks for the link, took a quick skim and appears helpful. I'll check it out and "subscribe" to it. Sent info to Hopkins for genetic counselling Saturday so waiting to hear back from them....
Hi Mumbo Thanks for reply, good to be back but still have lots to do to get back to normal with new computer. Haven't received package from Hopkins to complete and begin genetic counselling/testing,...
New computer arrived and much to do to get stuff on it but at least I'm able to log in here. Restoring all my favorites is early goal, hopefully it is possible and not too difficult. Also need get MS...
Hi again and thanks for suggestions, experience, etc. Still on borrowed computer away from normal location, ordered new one which should be here next week. Don't have time now to go through all the...
Back for a few minutes on borrowed computer away from where I normally check in. Still trying to recover from computer crash, appears I'll have to buy a new one. Losing all the links I've saved and...
Using a borrowed computer away from my usual location as my computer crashed this morning. Hope I can get it working as I have all my knowledge there. May not be here as often as I have been given...
Hi Haven't checked in for a while, been (and are) busy. Appreciate all the info and insights JNF, Mumbo, JC, Spouse. Sorry to hear of bone scan results Spouse, appreciate the info on Guardant 360....
JNF: Thanks for info on HDR BT and link. In the process of reading through that and separate UCLA HDR BT website now. Also trying to understand how radiation actually kills cells, difference in...
We really appreciate all the info, suggestions, sharing of experience. Got prostate MRI report today, seminal vesicles normal, no enlarged lymph nodes, no osseous lesions in pelvis. lesion volume .97...
WifeofPie Thanks for posting, your hubby's numbers are very similar to mine. Expect to start rads soon. Your post shows there is room for optimism. Thanks again....
Don't know if folks here are following my other thread so will post brief update here. Had Hopkins appointment Friday and I don't qualify for any PET clinical trials since I am already on ADT. They...
Mumbo: Thanks for SBRT suggestion and link. e.noont thread has a lot of good info, need follow it and digest. SpaceOAR discussion also got my attention and need to look into it, generate questions...
Sailor: Thanks for the reply and link to schoolpsych. Just finished sending him a reply with thanks. Mumbo: I have bunch of questions for local rad onco and will include questions regarding age,...
Bill As a newly diagnosed GS 10 your good news is most encouraging. Thanks for taking the time to provide the update and we hope for continued good news....
Looks like my local rad onc uses Varian Clinac iX machine for IMRT. Less than ten miles from home so very attractive from that standpoint. Anyone have experience with treatment using this equipment?...
Went to Hopkins yesterday. They do not recommend surgery. ADT + RT recommended. IMRT for sure, BT uncertain given my history of low flow. More detailed eval would be needed before pursuing BT. Thanks...
Thanks again for all the info and encouragement. Not sure I've answered all the questions asked so apologize for those I missed. Given Hopkins concern for brachy given my history of low flow, I'm...
Went to Hopkins clinic in Baltimore today. They concur with local urologist - surgery not recommended, go with rads. Brachytherapy a concern given my history of low flow. I don't qualify for any PET...
Thanks halbert. Added them to my list. Hope to get HDR BT closer to home if possible but want to go somewhere where they have considerable (and recent) experience. Hoping Hopkins does HDR BT....
Hi Mumbo Thanks for sharing. I've had slow flow for ages so your info there is particularly helpful. Triple play is looking more and more likely. MRI in a couple hours and Hopkins clinic tomorrow....
Thanks Halbert. I don't see surgery only as viable success path but wanted to at least ask the question. It would have a chance of success if there are no mets outside prostate and surgery gets all...
Starting a new thread to keep this from getting buried in my other thread. Search on PSA 3.16 to find that thread. I'm wondering how many with high gleason and low PSA have only done surgery. I found...
I've been trying to find out what facilities in my area offer HDR brachytherapy and it's taking a lot of time. Has anyone already compiled such a list? I did find a Varian site that lists the places...
Mark and Nytngale Thanks for info and encouragement. Been reading stuff most of the day and about burned out. Getting more comfortable with HDR BT if it comes to that. See some cases where it appears...
Here is copy of post I made at another thread "18F-DCFPyl trial - debating about it" earlier this afternoon since I am pursuing PET scan. Thanks for lots of information, recommendations, etc. One of...
Gary and Im and all who have responded Thanks for lots of information, recommendations, etc. One of the questions I have for Hopkins this Friday is whether there is any correlation between low...
Hi Spouse21 Thanks for prompt and detailed reply. I will go check out Yananow as you suggested. Hopkins may have a satellite but it's likely in DC and I don't know if they have all the equipment...
Spouse 21 Have been reviewing replies and want to thank you again for your thorough and helpful reply. My wife is actively involved, going to all my appointments and is sounding board for my...
Hi Im Wondering if you got into the trial, whether you have any results. I am newly diagnosed, low PSA (3.16 pre ADT) with high Gleasons (8, 9, 10). Recent CT and bonescan both negative but that...
JNF Thanks for detailed and thorough information, suggestions, recommendations. I will add questions to my list for Hopkins and local radiation therapist. I haven't really noticed any side effects...
Thanks Mumbo and Halbert Hopkins requested the biopsy slides and getting slides to them is in the works. Have CT and bone scan on disc and uploaded these to Hopkins this morning. Will send MRI as...
Thanks so much for the information, links, and encouragement from all who have responded. As suggested I have pursued information for low PSA with Gleason 8 to 10. I had not found the study in the...
Amazed and grateful at the quick and helpful responses. Will continue to post my experiences as we work through this. Would be interested to hear what others have done to help their...
Hi Mumbo I started new thread as you suggested (Newby with GS 10 but PSA 3.16) and already getting replies. This thread is huge and I can see why a separate thread is good idea. Will check back here...
Just joined the forum, glad to find it. Below is copied from earlier posting on the GS 9 and 10 thread. Age 73 Live in Southern Maryland DRE found suspicious firmness 4/2019 PSA 4/2019 3.16 ng/ml...
Hi Mumbo Thanks for prompt reply and suggestions. I will start a new thread, wasn't certain "New topic" was correct way to do it but now I know. I am compiling list of questions for Hopkins folks,...
Just joined the forum, glad to find it. Age 73 Live in Southern Maryland DRE found suspicious firmness 4/2019 PSA 4/2019 3.16 ng/ml 8/2019 0.05 (after 4 months of ADT) Biopsy: 4/29/2019 % of core...