Potential new issue

Hello, RandyD ~~~

I am sure these recent events must have felt like "closing some doors" for you ... understandably so, my comrade.

That being said, you are getting out the "ring of keys" and unlocking some potential NEW DOORS ---- and I am so glad to hear that. That's quick, decisive action on your part.

None of this comes with a team playbook, does it? Often, we all have to do our research, and find our way FORWARD. You have already taken those invaluable NEXT STEPS!

I applaud your idea of seeking input from the oncology TEAM.

They are going to get their set of eyes on your case ... and they may recommend a specific doctor for your case, who has specialized expertise ... and a "vision" for which treatments or medications will help you.

Keep knocking on those new doors ... I have been thinking of you, and will watch for your next posts and updates.

Hang on tight to that "ring of keys" & stay determined, just as you have been.

Handshake, fellowship, camaraderie, from "one brother to another" ~
CYCLONE ~ # Iowa State University

Lots happening very quickly
I received the pathology report from MO's office yesterday. Pretty much what I expected except for two things. The first is that the report refers to "multiple sclerotic skeletal lesions". Kind of a surprise since I had been old there were no mets beyond the abdominal mass. The second one is that seems to be some confusion over where the abdomen met came from. It is identified both as a prostate meth or from some other as yet unknown source.
MO actually had four treatment options 1)chemo treatments with cisplatin/etopiside 2) Chemo and immunotherapy as would be used for small cell cancer of the lung 3) Immunotherapy only, and 4) The clinical trial of a combination of immuno and chemo. This is the one the MO recommended and the one I did not get into.
I did go ahead and sign up for the other open trial. It will consist of infusions of nivolumab and ipilimumab. Both are immunotherapy drugs. The treatments start next week. I can opt out at any time based on 2nd opinions but I really am feeling the urgency of getting some kind of treatment started.
I still have not heard anything back from the MO group at Mayo. They now have all of my records. I really hope to be able to get at least a video conference next week.
I also reached out to Dana Farber. Thanks so much Stephen S, for the link and contact info you provided. In a major contrast with Mayo, I already have a video consultation scheduled for next Wednesday with Himasha Beltan. According to her bio, her lab is working on exactly what I have. Her opinion will carry a lot of weight with me in the end.

darn Randy, what a journey you have been on. I am glad Dana Farber is talking to you quicker. I hope you get the treatments you are looking for and you get positive Results. You mentioned how this group helps you, but it also works the other way around, you are helping all of us. We know that things go sideways sometimes and someone else will read this thread and get encouragement and advice. Good luck and take care. -JR

So sorry to hear that the one trial has closed but, as others have said, it sounds like you’re being very proactive and might find an even better option. I hope you hear good news soon.

Due largely to scheduling conflicts, my first infusion from the clinical trial I joined was Friday. Here is a link to the trial
Nivolumab and Ipilimumab in Treating Patients With Rare Tumors
The two drugs are also known as Opdivo and Yervoy respectively. I will get the Opdivo every two weeks and the Yervoy every six weeks. While the infusions were thirty minutes and sixty minutes respectively, it was still pretty much an all day affair with labs, Dr. visits and training for the procedures.
I mentioned to my Oncologist that I had not heard anything from Mayo and that I had also reached out to Dr. Beltran at Dana Farber and had a Wednesday video consult scheduled. While I was getting the infusions he took it upon himself to call both Mayo and Dr. Beltran to consult on my case. He reported that both fully concurred with my treatment plan and would have made the same recommendation. I feel much better knowing that other Doctors, especially Beltran, whose lab specializes in what I have, agreed on the way forward. I will keep the video appointment with Beltran as I have many questions. Among them, of course, is prognosis. My situation seems different than most as it has not yet metastisized beyond the single tumor. Most men have multiple mets before this cancer is discovered so their battle is even more challenging.
The infusions themselves were pretty unremarkable except that the nurse had to call in a backup before she could get the needle in a vein. This is always a problem for me as I have small veins. I left one nurse in tears one time when she failed after multiple attempts. They have suggested that I get a port which I will do.
We were done at about 3:30 and I was tired but good for the early evening. When I went to bed things changed pretty dramatically. I had a very rocky first night. My stomach rolled although I never got sick. I had very intense night sweats, far worse than anything I had on ADT. Everything hurt and I got very little sleep. Saturday was pretty much a lost day. I spent virtually the entire day in my recliner. I slept a lot, ate almost nothing and at one point spent over three hours covered in three blankets as I was so intensely cold that I could not stop shaking. Saturday night was much better as I felt like I git a good night's sleep with no issues. Today I am very tired but feel as good as I have felt in some time now.
In hindsight, I'm very grateful that my infusions got moved up to Friday. Had they been during the week I likely would have lost several days of work.

Well, Randy, you're on your way now. Getting the port put in is a great idea. For the rest, it's good to hear the top docs are all talking to each other, and they are collaborating on your path forward. That's how it's supposed to work.

For the rest of it, well, you'll get through it. How many treatments are you in for?

DjinTonic said...
Hang in there, Randy -- your PCa cells are feeling much worse!

What a visual! I love it!

Stephen S said...

DjinTonic said...
Hang in there, Randy -- your PCa cells are feeling much worse!

What a visual! I love it!

..............................................................................
Me too! I'm hoping your PC cells were violently ill and continuing to be so!

Post Edited (BillyBob@388) : 10/11/2020 10:13:27 PM (GMT-6)

Thanks all for your wonderful responses. I loved Djin's comment as well. That's a very memorable line. This trial is designed to last for 17 six week cycles or about two years. My goal is to be around when the trial ends.
I woke up actually feeling pretty good, both yesterday and today. The problem is the fatigue just zaps my energy in the first hour or so. I am grateful that my job allows me to sit at a desk all day because if was required to any physical activity, I would be out on disability already.

randyd....

I just want to say thank you for doing the trial. If people didnt do trials we would never learn/improve/heal.

I had my video conference with Dr. Beltran at Dana Farber early this morning. She is outstanding and I was very impressed.
While she did concur with my MO's decision to put me in the clinical trial I have started, she also stated that she would have proceeded differently. She would have started me on a relatively short course (two or three cycles) of platinum based chemo - cisplatin and or carboplatin likely combined with either docetaxel or etopiside. Her goal would have been to for quick shrinkage of the tumor and then hit it with radiation to finish the job. Treatment after that could be immunotherapy or some other clinical trials that are upcoming. (I have read separately that there is some promising research going on with Aurora Kinase Inhibitors for this type of tumor and that is what she was referring to.) She suggested that if I did not see a quick response on my current treatment that I might want to withdraw from this trial and go on the chemo/radiation regimen.
Her comments about radiation really struck a nerve with me because I have been wondering why we wouldn't go that route. Radiation worked so well on my prostate, why not employ it on this tumor. My current MO feels that I have already had the max radiation to that general area although he has offered a referral to their radiation oncology group. I understand that the tumor size needs to be reduced first but with the much more precise radiology equipment available today I would think they could hit just it with little impact to nearby areas.
She has also asked if she could get all of my tumor biopsies so that she can review them in her lab.

I am incredibly grateful for her time this morning and I truly appreciate her knowledge and research work. She does seem to be on the cutting edge of a cancer variant that I believe is going to impact more men time goes on. What I mean by that is that this tumor can develop either in it's own or in what they call treatment induced neuroendocrine prostate cancer (t-NEPC) in Dr. shorthand. This happens, according to current data, up to 17% of the time as men treated with long term ADT reach the inevitable (usually) mCRPC (metastatic Castrate Resistant Prostate Cancer) At that point, the PCa can actually mutate (my word) into the NEPC that I have now. It does not respond to ADT and can still show normal PSA levels. To me, this is a silent killer that no one seems to be talking about. In most men with this cancer, it is either never discovered (found at autopsy) or found so late that intervention is very challenging.
I have been incredibly fortunate because, as I write this, there is only the one large tumor in my abdomen. I am still considered incurable but that single fact may help prolong my life because it was found so early. I don't know if I can write this here or not but I have felt God's presence in my life on several different occasions and this is certainly one of them. A move halfway across the country due to Covid related job loss. a new MO who ordered new scans when my old one saw no need to and here I am, somewhat ahead of where most men are when this cancer was diagnosed. Call it what you will.
I hope that I am not viewed as some kind of trouble maker but I think more men need to become aware of the risks they may face as their "successful" treatment continues. Thanks to all of you who read and comment on my situation. I hope I can pay it back at least partially by reporting on what I am going through.

Randy, I am with you on the possibilities of the hand of providence being involved in your situation. Only the Lord knows where this will all lead to for you, but it seems certain that had you not lost your job, which led to everything else, you might have been way further down the road on the diagnoses of this new problem. May such providence continue in your life.

Post Edited (BillyBob@388) : 10/14/2020 9:13:12 PM (GMT-6)