Potential new issue

https://clinicaltrials.gov/ct2/show/nct03866382?term=nct03866382

Hang in there, Randy. I hope you can get into a helpful trial.

Mattam - Thanks for getting the link corrected
Pratoman - I truly appreciate the words of support. I have never given up on anything in my life and I don't plan on starting now. This change in diagnosis is still so new that I guess I am kind of living on the dark side of it right now. I will get past that and will fight it all the way.

Randy, I don’t really know what to say. We are all here for you and hope and pray that more can be done to help you through for a very long time.

As Sonny says, .....every day is a gift...And a mentor of mine always said....make every minute of every day count. I imagine these have more meaning as we all reach the inevitable.

Sometimes time races by.....and sometimes it goes very slowly. May the time you, and any and all of our brothers have on this earth, go wonderfully.

Best wishes,

Jack.

I just wanted to say that I hope you are successful in getting into the study, and I wanted to point out the following sentences from the clinical trials record (bold added by me).

“ Treatment repeats every 21 days for cycles 1-4 and every 28 days for subsequent cycles for 2 years”

“After completion of study treatment, patients are followed up every 2 months for 5 years

I got the results from the PET scan late yesterday afternoon and it's the first good news I have had in some time. The tumor in my abdomen is considered a met from my prostate but the scan found no other signs of metastasis anywhere in my body. I know that this cancer is aggressive and can spread anywhere at any time but at least, for now, I am fighting a single location
I am moving forward on two different fronts now. I have requested that all of my records get sent to Mayo so that I can see Dr. Kwon or some other appropriate MO there as soon as possible. My goal is not to question the Dx but to make certain that there are not any other treatment options available to me. Everything I have read tells me that this is kind of a one-shot deal. Unlike PCa where there are multiple additional options when the first line treatment fails, there is no such thing with this cancer - at least not right now. The other front is that I applied for the clinical trial yesterday. I wanted to get that process started as it will likely take a little while to complete
As Djin points out the only hitch I can see is the minor surgery stipulation. I have been told that as long as my surgical wounds have fully healed, I will ne able to join the trial.
To all of you, please accept my deepest gratitude for your unbelievable support and encouragement. You have no idea how much it means to me. I thank you all from the bottom of my heart.

Continued prayers for you Randy, and wishing for the best of treatments going forward. Keep the faith.

https://www.sciencedaily.com/releases/2018/07/180709161551.htm

Again, my link skills fail me but here is a link to a Science Daily article from July 2018 that pretty clearly suggests that the small cell cancer I have now: a) may have grown from my original PCa Dx and b) may be much more common than currently believed. This study states that the "norm" was expected to be around 1% of all PCa diagnosis. However, they find that it could actually be as high as 17%. I have read elsewhere that autopsies of men who died from PCa are rarely done but when they are, they also show that up to 17% may actually have died from small cell carcinoma. Pretty scary stuff for all of us.

randyd said...
UPDATE
I have had the Radiologists report for several days but for whatever reason, I didn't read it until just now. It says, in part: Malignant mass, probably metastatic lymph node, along the left pelvic sidewall approaches 8 cm in greatest dimension... Funny how the Radiologist can provide such a certain review and yet the Dr's response is "We don't know" I'm a little irritated right now.
Bigger question and concern may be - Metastatic from what and where? No other evidence of cancerous tissue was found.

Randy, just seeing this. I'm sorry for that bit of news. Praying for a good outcome for you.
Bill

Been following Randy. You’ll get some comfort once the structure of a treatment protocol is in place...with doctors you trust. You’re in the weeds right now Randy. Good results are coming.

Hang in there randy. The light, you WILL see again.

Post Edited (island time) : 10/3/2020 12:42:15 AM (GMT-6)

Hi Randy,

I didn’t see your latest posts until just now. I’m floored and of course saddened by your journey. Your recent scan is finally some good news. And I’m hoping the trial will also provide some much-needed good news.

Just wanted you to know that I’m thinking of you and hoping for the best.

Melaine

randyd said...
RobLee, Perhaps my reaction was more knee-jerk than well reasoned... I have already been told that I may have as little as 6 months... My intent was really to try and make things a little easier for my wife... I did speak to an attorney yesterday... "There is really no injury here. You were going to die anyway"

As your story keeps morphing, the lawsuit issue is fairly moot at this stage. My point was that you might not want to spend the rest of your life (at that time, thinking normal PCa lifespan of a decade or two) with regret for having dug the knife in a lot deeper. As it now appears that your lifetime is up in the air... could be months, could be years... if you were to pursue financial compensation, it could have a practical outcome for your family. Except for what that Atlanta lawyer said. So I will end by simply wishing you good luck with whatever course you follow going forward. Tough break indeed for you, but as I've had to look at the whole PCa thing, where there are 90 to 95% chances of a favorable outcome, there is always the few who end up being in that 5-10% who weren't so fortunate.

Yesterday was a very disappointing day.
First, after I completed all of the requirements for the clinical trial discussed previously, I was informed that the quota had been met and I would not be allowed to join. I was also told that they would not be reopening enrollments. I was offered what I view as a lesser trial. It includes the two immunotherapy drugs but does not include the chemo drug. There are two arms - one gets both drugs while the other gets only one. When I was first diagnosed with PCa we threw everything but the kitchen sink at it and it worked. This seems to me like half-measures. Not sure at this point if I will do it or not.
Second, I called Mayo to see what the status was with seeing Dr Kwon. I was told that they had all of my records and they would be reviewed to see if Dr. Kwon would see me. They then told me that even if I was accepted, it would be at least November, if not December, before I could get an appointment with him. I just can't wait that long so I had them transfer my file to the Medical Oncology group. Still need to go through the review but feel that I will get an appointment sooner this way. We'll see what happens.