More no's

Asked if BRCA testing could be done, she said it won't be helpful.

Also said they can't check for CTC's commercially. I don't understand that response....

Always NO.... Never any explanations.

They have NEVER shown any definitive anything that proves Paul's cancer is out of the prostate- just a lot of speculation and a lot of doublespeak. They say one thing and back out of that, then use that as reason not to do this or that...

They did order another PET scan... Whoop de dah... prostate cancer is so great at uptaking glucose after all!

The German never responded again with the information I was seeking on pricing and specific tests so I guess he doesn't care to do business with us either.

At lunch called some of the assistance programs found they were for certain meds only. Meaning the ones he should be on but can't be until much after his teeth are removed and jaw healed. Not a good progress day and all the no's are discouraging me.

Paul has been a grump to top it all off with a darn cherry.

Just seems like a lot of effort and time I've wasted. I think picking up a weekend job would be the best for solving money issues at this point. Its the only thing left.

Show your oncologist the CellSearch link - she may not be aware that it is commercially available now.

I agree that there is not enough evidence for the BRCA test, but perhaps you have a rationale for that. I don't think it's a battle worth fighting - and to avoid wearing out, I've learned that one has to pick his battles.

The FDG PET is pretty good at detecting advanced PC, which does metabolize glucose. You also have a baseline that makes it more useful for Paul.

Dr Bonhoff's or anyone else's analysis is of very limited utility without a biopsy of a metastatic site. They usually want to see tissue from both the prostate and a metastatic site. They often have different characteristics that will dictate treatments. You are kind of putting the cart before the horse in trying to get the analysis before you have the biopsy. After you get a biopsy, if you do, would be a better time to advocate with the path lab for special staining and receptor analysis. And if they do it, it will be a lot less expensive.

- Allen

You are raising a very good question about the timing of the PET after the radioisotope is injected. I know that time before scan has been questioned for the choline and acetate scans, and can only assume that they know about how it works with the FDG PET scans on some very sick patients. FDG has been around for a while. I think it's a great question for the radiologist. Paul is indeed lucky to have you as his advocate.

- Allen

Hey Goodlife-

his was below 35% then at 35% for a long time so there is a chance it may improve for you too? They had to d/c the beta blocker about 3-4 weeks ago d/t orthostatic hypotension which was severe. No tests since but cardiology followup Monday.

Paul refused the internal defibrillator. I am glad he did, one less thing to worry about.

Pretty sure the reason he is so darn pale is because of that EF and still fairly intolerant to activity (but that is slowly improving). Hoping he doesn't have any more runs of the non-sustaining SVTs and so far so good. Would be nice to be able to do long walks or bike rides.

Tried to find data on uptake but nothing except a side mention. The half life of the FDG is 110 min is the only thing I did find. When I call Mon. to make the apt I will def ask them to talk to the radiologist. I did ask the palliative care MD and he just said "I thought that only affected perfusion in extremities" so he has no clue..... This is the doc who didn't believe Paul had the incisional hernia because "there isn't anything in the report".....

Is there a way to ask for a review of the scans that won't tick off the docs/radiologists since at least one (huge) thing was clearly missed? What else is on there that my untrained eyes don't see and has been missed?

I wish there were a group of independent radiologists that would read scans already done at a reasonable price for patients. They would have a pretty good business.

My wife and I both did the $99 23andme analysis, and they tested for two BRCA1 mutations and one BRCA2 mutation. FDA won't allow them to report health results anymore, but you can still send them your sample and get back the raw data and then run it through a program that you can download from another site and that program will report your health information.

How to circumvent the FDA:
technologyreview.com/featuredstory/531461/how-a-wiki-is-keeping-direct-to-consumer-genetics-alive/

Testing123- thank you!!


Goodlife-

The doc who discharged Paul with a bowel perforation told me to relax. I did. So did the one who said his heart was fine on his second hospital discharge. I did then too...

I was told nothing was on his recent scans showing the huge hernia....that there were no changes in his lungs, that nothing is in his neck and throat but by god there it is clear as day...

Should I go on?

I listened to them all before despite my gut saying something is very wrong and he nearly died. I won't do that again- this time I am going with my gut all the way baby.

Its so easy for you to say but if you were in the same boat you would be watching like a hawk. There is no doubt he would be long dead if not for my diligence up to this point. You have no idea what we have been up against starting from the very beginning. I have never ever encountered anything like this in all my life. You realize I had to ask three docs before one would even refer him to an oncologist?

We literally have to ask for things and plead at times..... Even now- Outside doc made recommendations that were ignored, his scans show stuff in his neck and throat that recommend a better look, and they ignored that too. The huge incisional hernia wasn't even mentioned, nor are the lymph nodes. The doc decided the lung nodules reappearing were always there, despite at least half dozen scans showing otherwise. Nobody would listen about hernia until the good surgeon returned- and it is bad, and I am sure getting worse. But surgery is major... not advised. No treatment until dental surgery we can't afford and Paul won't have until he can have replacements made- his pride and vanity isn't dulled.... He is very conscious of how much he has changed already. Oh how I could go on and on and on.

We had his cardiac doc slip and say they really wouldn't do much of anything regardless since he only had about 2 years at best to live late last summer. Probably has more to do with denials and delays than anything.

Will I relax? Sure I will and I do, did most of weekend actually. Do we have docs we trust? Some, not all- but are limited by a narrow network with regard to choices. Am I going to arm myself with every bit of information possible and leave no stone unturned? You bet your you know what I am. Am I going to voice my gut feelings from here on out? I have been and will continue, even if it has seemed to fall on deaf ears.

In the meantime I lay here writing this, looking for something that will help Paul as he lays here once again in the most unnatural contorted sleeping positions that can't possibly be comfortable awake, nevermind asleep. They say this is a sign of the end of life being near in hospice books as the last months of life approach and this worries me to no end. I just want him to be able to enjoy every day, to be able to go to California to see his nieces he hasn't seen in years (and some he never met yet!).

I want to be able to say I did everything I could while he was still here and I don't feel that given the above and all the catastrophes in his care so far that I feel responsible for by acquiescing, that I can't honestly say that now. I want him to have the best treatment there is.....

This can't be all there is, I just don't believe it.....

Kristine,

I think as I am reading these post, what I am hearing is "Remember, the care giver must take care of the care giver as well."

I loved meeting you guys and getting to know you just a bit. Paul is a lucky man and I think he knows that.

Take a little time for yourself and take a deep breath every once and a while.

Cajun Jeff

Kukukajoo, I haven't commented in your thread because this stuff is way beyond my scope of knowledge. Just want to say I hope things improve for your husband, and and you guys find some peace. It's heartbreaking to see anyone go through this, especially at such a young age.

To have a doctor actually YELL at you, in that situation, is unimaginable.
Paul is lucky to have you, more so, than can be expressed in words.