Hi there, What region of Kaiser are you in? They are covering it for my husband with no issues. We're in GA....
He will always be in your heart AND you will meet again. Love and light to you Beth. Do what you need to do to get through the next days. I am here for you any way I can be. Godspeed, Gary.... and...
Tall Allen, Paul has the Tp53 or p53 as it's called. Would this qualify him for keytruda? It's acquired and not in all cells but picked up on his color genomic testing....
Happy the bed arrived. We had ours pushed together like that when he came home from all his surgery and complications. It helped a lot. I see the counselor later today so maybe I'll get something out...
Charles Color Genomics tests for 30 mutations for a grand total of $250. Well worth it in every sense. I had just some of same tests through ambry which cost my insurance over 30 grand! Not all cost...
Hello Beth and Gary, This week was a real challenge to me. Beating myself up about dropping my class and uncertainty if I can continue with school right now. Had our site survey at work which we did...
Oncologist said just start zytiga and take whatever it adds to length of life. If it doesn't work or stops working then he'll switch to xtandi then. No other news to report....
Billy Bob if you look at the link down below in description it says it is modified. Maybe contact them to verify this?...
Is this recruiting?...
I just did some reading on it and found a bulk source. If you look at the bottom it is modified citrus pectin. I had studied pectins a while ago for making jams....
I am interested in the rationale for taking this.......
Hi Beth, please don't let yourself get too exhausted. As Suzanne said you can always ask.... unless you're like me and hate to impose too much. Don't be like me! I realize I'm screwed when Paul gets...
Apparently he's got a genetic variation that men who have it are more likely to progress faster on zytiga with much shorter duration to failure. Of course after Paul just picked up his first months...
https://www.ncbi.nlm.nih.gov/pubmed/27409606?dopt=Abstract Int J Mol Sci. 2016 Jul 9;17(7). pii: E1097. doi: 10.3390/ijms17071097. Common Genetic Variation in CYP17A1 and Response to Abiraterone...
Thank you Cyclone. I am looking into everything I can find. His FACBC scan was approved with no issues and scheduled Aug 15th. I will ask about the other meds as everything is worth a try. I just...
Paul won't agree to any surgery at all unless it's an emergency. Even then I'm not sure he would. He still has nightmares since his previous surgeries where he had awareness....
He picked up zytiga today but I'm wondering now if he skipped a step and should try another that you mentioned first.... It was under 20 for so long. .....
Paul picked up his Zytiga today and it's 4 a day. They told him it would be changing to 2 a day soon though....
Doesn't that seem kind of high? It was 17 at lowest. Wondering if that's why psa is rising. Which btw his psa is .29 today stable as last month was .30..... Just that testosterone seems like it...
Sue I hope I am as composed and graceful as you and Beth have been through all this when the time comes. I need to find my strength. Sending love and prayers. Kristina...
Sorry this is the study https://apps.winshipcancer.emory.edu/clinicaltrials/Search/Details/RAD2786-14...
Not sure you are aware but the FACBC is FDA approved now. Emory is doing it, we are dealing with insurance approvals now as Dr Kucuk at Emory has ordered it. Also there is a study for it if you are...
As a wife, my heart goes out to you men and the ladies that are there for you. It's hard on me as well but a necessary thing, as I desperately need more support in our lives. You all are like family...
Suzanne thank you. We're not nearly as far into this journey as Beth and Gary by far. I think that's some of the fear. How much more can we take. When the time comes I am sure everything will work...
Beth I can't wait to read it but right now suffering from lack of motivation or maybe frozen in fear. Every thing I'm supposed to be doing is not materializing and I feel like my mind is racing...
Cyclone, amazon just delivered that book to me. Not sure when I'll have time to read but hopefully soon. Beth I hope you've both had a great couple of days. I should have a chance for a private reply...
I made a post earlier today and it's not here. I can't trust my phone. There's bed alarms and also maybe a bedside commode would help? Paul took a header in the kitchen a couple weeks ago which...
Today I completed the coursework for my religion course other than the final exam. Feels good to be done and the hot, muggy tropical air didn't bother me a bit today! I think having to read about...
Thinking of you Beth, and Gary too. It's a rainy night here and Paul is sleeping well with the patter on the roof. So peaceful... I hope it's as peaceful there for you this evening. I haven't done...
Just dropping some good news.... Pauls MRI came back with no mets in the head! I'll be pushing for the facab scan this week... fingers crossed they approve it since it's already ordered....
Hi there. So far they're saying no biopsy yet on nodules. Still under 1cm. I guess we wait? Maybe the facab scan will show something. I would think a bronchoscopy with lavage would give some answers...
https://www.snpedia.com/index.php/Testing...
Count me in...
I've done that in the past and brought them to visits. I guess it's time for me to start digging out more papers and studies. I know we are in for a fight for the FACAB, that was already mentioned....
Test through color genomics using a pseudonym? It's only $250 https://www.color.com...
Tall Allen that's the truth... Strangely the Inc said not to bother with radiation since it's already reached the lungs it's no use. Wtf is that supposed to mean. He had innumerable nodules at...
Hi Beth. The biopsy showed all samples had underlying 5% of Gleason 5 which I wonder about. Not sure what the test would be for neuroendocrine. His P53 mutation makes cancer proliferate as well and...
BTW it seems we are seeing much more progression than we should with the PSA still being low. Question about another cancer (lung?) or is it Prostate but too small to biopsy right now with largest...
He's officially hormone resistant. PSA is only 0.33 but 4 rises in a row- the first 3 at 2 mo intervals, the next at less than one. Emory onc said Zytiga is next step and ordered a FACAB scan on...
Hi Beth and Gary! I hope your tail is still wagging. I've actually looked into death with dignity for myself for the future if my autoimmune stuff gets real bad. Having a friend bedridden and...
Hi Jeff hope you're well. I've tested free at 23&me on a lupus study and at ancestry. Paul tested at ancestry. We both tested at color genomics. This one showed he had acquired tp53 in some cells at...
Just letting you know that we're thinking of you both. Hope the visit with MIL is going well. You're both such gentle souls and I envy your relationship. Give her a hug from me. Today is a homework...
There are so many other things you can be doing tonight. Just an FYI.... my husband's PSA was 115 on diagnosis. Those that are freaking out about jumps like yours have already been diagnosed and had...
Listen to your doc and Tall Allen. God I wish this was the problem Paul and I were facing. I would sell my soul to have Paul dealing with this dilemma now....
I can't thank you enough for starting this thread. We just found that Paul's cancer is on the move and he is officially castrate resistant with his 4th rise in PSA. Soon as he stopped the taxotere it...
Sorry you are facing this. Paul has a small stricture and stronger polyurethane caths are what he uses as latex is too flimsy. I don't have any experience in this but do have a patient who recently...
Beth (and Gary) I have read through this thread after a very long absence and it is breaking my heart. Paul and I think often of visiting you and having that amazing chowder then deciding to stay...
I just wanted to say I am in this battle as well, and MAYBE making progress. It is still too soon to tell. I gained over 70 lbs in last 2 years when this trouble all began. Hashi and other autoimmune...
Thanks Allen. Paul has had a bit of a rough one since I last updated. His PSA dropped to a low of 0.09 Sept 2015 then began to rise back up to 0.36. he made the decision to start taxotere for 6...
Hi Tall Allen, Paul and I just got tix to visit his nieces and sister in law in Laguna Niguel. We will be out there beginning of Feb. If we can scrape up the money do you think it would be possible...