DebbieMH... I was looking at this trial for my husband who is CHEK2 positive but he started Zytiga 3 months ago which is classified as a CYP-17 and therefor excludes him...who knew! There are other...
For what it is worth...UCLA's scan trial using the GA-68-PSMA requires your PSA to be 2.0 ng/ml OVER your nadir AND it is $2650. Tall Allen do you know if the UCLA is PET/CT or PET/MRI? Also, TA do...
Carolyn, At Tall Allen's suggestion I called Caris Molecular Intelligence and they said that they COULD obtain the genetic material from previously irradiated tissue. Today I asked DH's MO and he...
Congratulations Jerry...
Just fabulous!...
Thank you Carolyn, I will check it out further. Also, TA gave me some resources to investigate. Joanne...
Hi all, Do any of you know if a previously radiated (SBRT) lesion can be successfully genetically tested? My husband is scheduled for a laminectomy at L5 in a few weeks and the neurosurgeon said he...
Mrs. JohnKeats, I remember how hard your husband worked on trying to find treatments options for his 80 year old father who also had the BRCA2 mutation. So sad to hear this news. Thank you for taking...
Yes, Darie very interested in the LU-177 Theranostics therapy. Thank you! Joanne...
Beth, Just as Pratoman, "the news took my breath away". Cyclone expressed my exact feelings of "not having the words to express my sorrow" and Mary shared her wisdom of "how lucky we were we to have...
Whattheheck...I am afraid your post will not be widely seen here...in case Tall Allen doesn't respond to you, please email him. His advice is not to be underestimated. I am sure he will have ALL your...
TA...it is a mystery and thankfully did not return when Lupron was resumed and within 2 months had SBRT. BTW, the skin disruption looked the same the same at each location including lower pelvic...
Hi Rocky...Urologist and I thought the red bumps and red lines on hubby's face, chest and head and well as site of IMRT was shingles, dermatologist thought it was radiation dermatitis, RO said it was...
Hi there...if it were me, I wouldn't waste any more time or money on old scintigraphy bone scans especially at your low psa level, when there are so many great scans out now that would show you where...
If I were in your shoes I would take the Tall Allen advice......
Re the Lu-177 PSMA clinical trial...last week Glen's MO at UCLA said he thought it should start in 8 months. Maybe a call to them could give you a better idea of when it is supposed to start. Of...
Hi Chask My husband also suffered from leg cramps for years and I put him on magnesium and potassium supplements last year and they went away within a few weeks. A real life changer for him! You...
Ash K, With your young age I would encourage you to get some genetic testing. Our MO Dr. Rettig at UCLA recommended color.com who test for 30 most common mutations. It is a simple spit test you...
MO recommended color.com for genetic testing. Husband tested positive for chek2 mutation which increases chance for prostate, colorectal and breast cancer. Knowledge of this mutation may indicate...
yaamba - this is a really good primer on scans https://www.youtube.com/watch?v=CASf1GT0P7I...
Love to see this thread continue...
Boy, I had no idea there were that many variations. Highlander64 - they mention Ductal under Glandular prostate cancers. Is ductal and intraductal the same? How do these rare types with low PSA...
yaamba - how about a sodium fluoride PET/CT? Way better than old fashioned bone scan. Sorry about the hermit...my husband and I, while busy, prefer staying home on the range. Tons of travel with...
yaamba- So in January of this year you had a PSMA Pet/CT when PSA was 0.65 and nothing was picked up? Was that a 68 gallium PSMA/CT? Why can't you have another advanced scan now? That level of PSA...
There is an excellent video on youtube that discusses all prostate cancer scans and compares with great slides. I think the 68 ga PSMA Pet should be sought out by anyone who is dx with Gleason 4's...
houseboy, did your recent C-11 Pet/Ct show where your PSA is coming from?...
Dr. Kwon's 1-11 should be a sticky. Also, Dr. Myers Metformin opinions....
Thank you Cicero2K. I am going to save Kwon's 1-11 and never forget. Love that man!...
Hi CaliJr...I have been going back and forth on attending. Are you going for all days? Can you advise on which are must attend this year? Anyone else from HW going TA? MichaelT? Jo...
I hate to say...but honestly I (wife) feel like your husband! Over the last 5-8 years I have cut out most of what kept me running around. I used to have a very active civic and political life and...
Thank you for that mtnwife..hope you get to the bottom of the bloodshot eyes. I would def see an ophthalmologist. Can anyone tell me why the se's would be different between lupron and an orchiectomy?...
Hi Mary, I was looking through some old posts and I saw where Tall Allen suggested some genetic testing. Here is what he said. "Sonny was going for an NIH study where they do a genetic profile of...
Rosewood...It is hard to catch ALL that the doctors with different specialties tell you, and keep it straight, as it pertains to your case. Having Tall Allen offer to accompany you is awesome....
Hi Maryanddan, love your thread title! My husband, G9 high risk, finished his IMRT Feb 8th, continues on Lupron and we wait for three month to see how the radiation did. Dr King would not start...
Husband has 11 remaining on his IMRT with Dr King. He is as you all say, a kind, kind man. I had a question on RX and expected to get a return call from his nurse and I was taken back when I answered...
Happy writing Allen. I will miss your posts and look forward to your return. Jo...
So sorry to hear this Michael. This is tough. I lost my 54 year old brother 4 years ago and I still expect to see him bounding up the stairs. My prayers are with you and your family. Jo...
It was so hard to hear the Doctor, even after the mod asked him to speak up...the graphs seemed to show that it was not for advanced cases....
registered...
Tall Allen, You know Tall Allen, I feel at such a disadvantage in discussing DH case because the Dr's have not shown us the MRI's, bone scans etc in detail for me to make a case for one treatment vs...
Michael_T...As Elon Musk says about his daily drive from Bel Air to Torrance "It is soul sucking." We are hoping for an 11am or noon daily appointment to cut the drive each way to 50 min vs 2 hours...
celebrate life, Your DH and Michael_T are so young...breaks my heart. Thank you for sharing your wisdom. Like you celebrate life, I am the researcher, and question asker. Which goes in the face how...
Michael_T Husband got his 1st Lupron shot at the DX meeting with Dr. Marks. He said "We have to hurry up on this." Dr. King added the casodex the following week at our first meeting with him. The...
Tall Allen He described all options including SBRT. I wasn't aware that he had the clinical trial on it at the time. However, I was concerned about getting all the surrounding tissue. I did express...
Thank you Ken, Really, I don't see the point of getting a blind biopsy. Yesterday, I listened to an audio podcast on the subject (Tall Allen was on panel) and the Dr from the UK said they have been...
Andrew; I hope we are able to catch it. After seeing so many poster's path reports upgraded after surgery, it scares the heck out of me! nepol; Thank you for that! Tall Allen...what a resource for...
sheepguy. I am trying to think how many years he has been on it. I will have to check, however, I think it has been at least 4-5 years. It has been remarkable!!! Absolutely stopped the progression...
Thank you for the welcome Andrew. It will be a month until the fiducials go in...wish we could start already, however I understand the HT has to get going before the IMRT. sheepguy; this is what I...
Hello Everyone, So, after several months of a "hair on fire, deep dive" into studying prostate cancer, I want to thank this board and all of its seasoned members for their immense help. Every time I...