This is how it went: Jane was over last night, and she agreed to review your posts, but I HAD TO READ THEM ALOUD. So, I did. Her, my wife, and I, with my son going in and out of the room, were there.
First, I want to thank everyone for their kind posts, and Jackie in particular, for the comedic side. As I read, my emotions were all over the place, some smiles, some tears. I went straight through from the beginning, only stopping for some side chatter.(read as re-reading) But in the end, Jane was the only one who had no clue as to what you were all talking about. What she get out of the whole exercise, was this: What about the guy who rides his bike 20 miles a day?
Well, we know Dr_Who has a an odd ductal PCa, and I think he's not quite two years into his journey. At two years, I too was feeling no pain, I was working, and all too often, working a bunch of overtime. It wasn't until I had been Dx'd, and not told about a blocked bladder, that put me out of work. I recovered from that nightmare this past January. I dealt with that for three years, I thought I was going to die, I was that weak.
So, my final conclusion is that Jane is an idiot. The evening ended with a huge argument between Jane and I. She left all pissed off, my wife didn't say a word. I feel vindicated, thank you all.
So sorry that Jane is an idiot. When I read your note, I had to turn off my computer and try to calm down. I am sorry to do this to you but her attitude really hit a nerve. Please know that the below is not directed at you.
How dare she use me to degrade the discomfort and lack of energy that you feel. So who the $$$ cares that I ride 20 miles on my bike? For some that may be a lot. For me it is hardly even worth calling a ride. Three years ago the smallest ride I would do was 60 miles. (Earlier this spring I did ride 62 miles. I was in bed for a week.) What part of that could she not understand? Does she think that I sleep over 12 hours a day for the fun of it? That my want my 115 lb wife to carry in the bags of salt for the water softener because I do not have the strength? That most days I max out taking pain pills (primary Alive)?
Yes, I try to stay on the positive. I try to be as active as I can be. That does not give her the right to take my statements out of context. How dare she judge you based on a paragraph the I wrote. There is a man here with advanced cancer that runs marathons. Does that mean that the rest of us are slackers? It does not give her the right to minimize dealing daily with the effects of having advanced cancer. She not only insults you she insults me and everyone on this sight, warriors and caregivers alike.
As noted, my cancer is not your cancer. Where I am at in my journey is not where you are. My pain is not your pain. My daily humiliation is not yours. How long a future I have will be different than yours. My anger at idiots is different than yours...
Please know that you have my full support. I am very sorry as to how strong the above was written. I pray that you do not misinterpreted my statements.
And, she expects me to hang curtain rods for her. In concrete walls, no less. No shit, I can do it, but do I feel like it. She's well enough off to be able to hire someone, but she knows she'll get it for nothing from me. That was a downfall of mine, doing for others, for nothing. Take my Aunt for instance, I rebuilt the front of her termite riddle rancher, at cost. Three windows, about thirty feet of wall, Inside and out. In the end, I asked for the price of the three windows. She was cool with that, and also offered me a drill press. Well the drill press disappeared from the shed, so I didn't get that. And, she stiffed me for the windows. I didn't attend her funeral.
You mean your wifes friend is the one who wants you to hang curtain rod in concrete? Wow , obviously she was hoping to get some free work before your retired, with her attitude I would not do it if I felt well. I have a similar thing with my wife, she seems also to have no idea of the side effects I go through,always wants more work,and believe me I am talking a lot more side effects than being tired , or having some hot flashes, I would welcome a few hot flashes if the other side effects of Cancer and Cancer treatment would stop. Looks like I will not get approved for trial of Keytruda and radium because my Lymph nodes are too big , i will know for sure after repeat Cat scan ,its thought that the radium activates the pd1 pathway and allows keytruda to work in in MCRPC with bone mets. Working on the Garage today
I hope you can get on the trial, Dan. I understand your frustration, some guys just get treated better. It's not a big deal to hang the brackets, it's just the point. And, in all honesty, it will beat me up a bit, because that's where I'm at right now.
Just to double-check, Dan, in the original double-blind, randomized, placebo-controlled phase 3 clinical trial for Xofigo (Rad 223) of patients with castration-resistant prostate cancer with symptomatic bone metastases, only patients with visceral metastases and malignant lymphadenopathy exceeding 3 cm (30 mm) were excluded.
In my reading of a current clinical trial for adding Keytruda to Xofigo, the Exclusion Criteria included,
"Evidence of nodal disease greater than or equal to 15 mm in short axis as these findings are concerning for metastases"
That's a considerably tighter restriction for the size of lymph nodes, involving as little as 1/8th the volume of an affected lymph node than the original Xofigo clinical trial and subsequent FDA approval.
Seems (to me) like they are either being extra cautious, or they want to "cherry pick" the Trial participants to include less diseased men, or possibly both.
If you have only a very few questionable lymph nodes, perhaps you can appeal to the Institutional Review Board (IRB), and present any radiological evidence you may have as to the prior shrinkage or historical and current stability of those supposed disqualifying lymph nodes?
Chuck, Thanks for that, I reread my ct, and it seems I have a lot in that are bigger than 15mm, I should have checked, My MO called this afternoon to tell me about this, I will find out when I go in for ct in the morning, Here is a paste from the last ct
Largest mediastinal lymph node in the subcarinal region measures 5.0 x
2.4 cm (series 2/image 59), previously 5.3 x 2.8 cm.
Right hilar lymph node measures 2.7 x 1.7 cm (2/image 44), previously
2.9 x 2.0 cm.
Left infrahilar confluent lymph node measures 5.0 x 2.3 cm (series
2/image 55), previously 5.3 x 2.6 cm.
The largest mass is seen in the left
side of pelvis and measures 6.6 x 3.8 cm (series 3/image 66),
previously measured 6.5 x 3.9 cm.
There are heterogeneously enhancing masses in the presacral space,
largest measuring 4.3 x 3.8 cm (series 3/image 65), previously 4.8 x
4.0 cm.
There are surgical clips in the upper pelvis with an adjacent
heterogeneously enhancing centrally necrotic mass which measures 2.7 x
2.0 cm (series 3/image 60), previously 2.9 x 2.4 cm.
I was hoping to get in, but have accepted I may not get in, If not I will do radium locally, and try to rechallenge with xtandi.
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