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Posted 10/15/2020 9:37 AM (GMT 0)
Hi Randy, before I got to Richard's post I was thinking this is why I joined HW when I was first diagnosed because it was informative and also it was real because people talked about their real life experiences. After reading his post it just reinforced my thoughts! It's so good to see our forum getting back to focusing on PCa. I have been helping my grandson with distance learning and this week one of his assignments was to form pictures from this story he was reading. I feel that you have given us so many great pictures in your wonderful posts in your journey with PCa. You have presented frustration, hard work, diligence, disappointment, determination, thankfulness in such a personnel way that it makes us feel we are right along side you in this battle. I just want to say thank you and to join the other guys in wishing the very best as you battle this beast of PCa!

Larry
Posted 10/16/2020 8:07 AM (GMT 0)
Thank you for your updates, Randy. Know that I'm thinking of you and sending you positive, healing energy as you battle this beast.
Posted 10/20/2020 12:36 AM (GMT 0)

In the midst of the storm, you continue to find the "silver linings" ---

I am thankful you have been able to balance your work with ongoing treatments. It can be tough sometimes.

As a teacher, my chemotherapy treatments started during "Back To School" week in August of a new school year.

I later had 45 radiation treatments, which lasted an entire "quarter" of that school year --- nine weeks.

Sometimes we "gotta' do, what we gotta' do" --- to get through the days, during treatments.

Rest up on weeknights and relax on weekends!

One thing that I did while pursuing treatments, and working full-time ---I set an earlier bedtime.

Even an extra half hour of sleep will pay off at work the next day.

You have received tremendous insight from Dr. Beltran at Dana Farber.

Continue to stay in good contact with your evolving medical team --- you have put together an insightful and experienced team.

Your posts show us that you have chosen a specialized treatment path ... I feel it will pay dividends.

Just a few lines, RandyD, to let you know I am sending you ongoing hope, undaunted courage, and iron-willed determination!

Camaraderie and fellowship ~~~
CYCLONE --- # Iowa State University
Posted 10/24/2020 2:13 AM (GMT 0)
Sorry to hear what is happening to you. Ca is so unpredictable. My husband is having very similar problems. June 1 stated having L flank pain dismissed as muscular. Continue to persist and talked to mayo they instructed local mo to do ct which was neg. pain increased to intolerable by June 29, was seen in mayo fo regular checkups on June 26 an had c11 pet scan. It didn’t show any thing on L side they just recommend seeing their pain management dr. June 29 pain out of control into local er Ct done tumor on ureter by the bladder. He had a bladder and kidney infection also. They wanted him to get in to his urologist ASAP. Seem onc next day urgent call to urologist, with call back. Pain was unbearable July 3 with pain meds into er another ct done showing tumor large, now hydronephrosis. Put IV antibiotic an IV pain meds and ketamine drip to control pain. As soon as a stent was to be inserted his pain was relieved. Now 3 mo later and another CT the ureter tumor is not much larger, but the it now shows 3 tumors and salt an pepper areas in the liver. The onc feels that we we are looking at small cell ca that has morphed, changed or whatever ca likes to do, after you fought it with about everything there is. Ron has prostate cancer 5 3/4 yr was Gleason 8, psa 4
Lupron every 6 month, seed implants, 25 radiation therapy, zytiga, xtandi docetaxel,jevtanna plus other oral hormone therapy. We had a liver biopsy 2 days ago so we are waiting for results
Posted 10/24/2020 1:17 PM (GMT 0)
Min17
God Bless you and your husband. This is exactly what worries me about Neuroendicrine Prostate Cancer NEPC. It can, and does mutate from regular PCa, especially after long term ADT and when you reach the castrate resistant point. It can also develop entirely on it's own. It seems to me that even a lot of the Dr's just don't understand it. I had to have the tumor above my bladder biopsied to determine that it was NEPC. Your husband may need the same thing. It's critical to know because if it is NEPC, ADT will not work on it.
All the best as you move forward. Please keep us posted on your husbands progress.
Posted 10/26/2020 12:55 PM (GMT 0)
I have small veins. It drives nurses nuts and causes me some amount of pain since I usually have to get stuck at least twice in order to get a good vein. My infusion nurses convinced me to get a port so Friday was port day. It seemed like a pretty straightforward procedure. I was out for about an hour while they inserted the port in my left upper chest. It's doing ok although I have more pain and discomfort from it than I would have expected. They tell me it will get a little better each day so I guess I am just going to need some patience.
Friday was also my second round infusion day so my brand new port got put to use almost immediately. My infusion this time was just the Nivolumab (Opdivo) It only took about 40 minutes and didn't cause me any problems at the time. I slept pretty well Friday night but once again Saturday was pretty much a lost day. Spent most of it in my recliner. Sunday was better. I felt pretty good (except for my port incision) but I still spent most of the day down. I guess, unless you have been through it, It is really hard to describe how debilitating it is. I am still working and even today the short walk in from my truck in the parking lot to my office leaves my heart pumping and short of breath. I hope it gets better because I simply do not have the option of not working for at least another year.
As noted in another thread the combination of Opdivo and Yervoy are now being advertised on tv. The ads leave me feeling a little uncomfortable as they specifically identify their use for non-small cell cancer. I have small cell cancer so, in theory, they don't apply to me. I understand that's what trials are for but it still is concerning.
Posted 11/25/2020 6:36 PM (GMT 0)
UPDATE - 11/25/20
I have now been on the clinical trial of the immunotherapy combination of Nivolumab (Opdivo) and Iplililamab (Yervoy) for eight weeks. I've had 4 infusions of Opdivo and two of Yervoy with the most recent for both being last Friday. Jus as a reminder - I am now being treated for Small Cell Cancer of the Prostate (also referred to as Neoroendicrine Prostate Cancer. I have tolerated the infusions reasonably well with the primary side effects being fatigue (that seems to be the case with ALL treatments), itching, and constipation. Otherwise I was doing ok.

I had my first follow-up scans yesterday and just got the results a few minutes ago. Unfortunately, it was not good news. My Dr. reminded me how aggressive this cancer is and the told me that the solid mass tumor above my bladder had grown somewhat. He also told me that three lynph nodes that had some involvement had also grown slightly. I don't recall any discussions about Lymph node involvement before, only the solid mass, but my wife tells me it was discussed. Thank God we have been able to get her into all of my appointments despite the clinic's prohibition against guests..

He is withdrawing me from the clinical trial immediately and I will be moving to a combination of the chemo drugs Etoposide and Carboplatin, along with an immunotherapy component with a drug called Atezozumab. Infusions with this combination will begin next Tuesday. If anyone can provide their personal insights into any one of these drugs, I would really appreciate it. Also, any tips for making the infusion go better and minimizing the effects would be great.

I was also able to meet with a Radiologist today for the first time who said that they had great reluctance to give me any more radiation until/unless we can shrink the big tumor. At that point, radiation or perhaps even surgery may be possible.

I asked the Dr. about a prognosis which, of course he was reluctant to provide. I asked instead for the shortest time he had seen and was told six months. He said the longest he had seen in his patients was over 5 years. He also told me that I am presently his only patient with small cell PC although he has a number of patients with the almost identical small cell lung cancer.

Obviously a very disappointing outcome. This is especially true since I actually feel pretty good right now and was kind of expecting good news.
Posted 11/25/2020 10:52 PM (GMT 0)
Randy,
Thanks for the update. Sorry for the disappointing results. All I can think to say is that the survival potential of years grabbed my attention.

It seems like you have a good team. I'm hoping for the best for you.
Posted 11/26/2020 2:38 AM (GMT 0)
Sorry the trial did not help. Glad there is another plan to try. Also glad you actually feel ok. That is good news.
Posted 11/26/2020 12:38 PM (GMT 0)

Hello, RandyD ----

I am glad you tolerated the eight weeks of the new treatment fairly well. At this point, you can be assured you gave this new approach a fair chance.

I am encouraged that your doctors have a new, specific, and targeted treatment plan ready to go.

It sounds like your medical team is really putting together a new battle plan.

There's also the idea presented that surgery or radiation could eventually be possible.

My lessons learned from chemotherapy --- plenty of healthy hydration to help you rebound in the days after each infusion ---- rest as needed ---- set an earlier bedtime ---- stay focused on "one treatment at a time mentality" ---- and try to take some walks --- they can boost energy and lift one's spirits.

Focus on comfort foods and healthy eating. Set daily goals and keep busy mentally --- with tasks and hobbies.

A fellow needs to really take care of himself during chemotherapy, and rest up during those rough days that follow an infusion, and look forward to those "feeling better" days afterwards.

Above all else --- stay connected to family, friends, colleagues, and neighbors --- with messages or phone calls. That support is essential.

We are your fellow "battle brothers" here --- we stand alongside you --- and no one here fights alone.

I will watch for your posts, and I send to you my support, hope, and encouragement.

Stay strong, one day at a time ... and I am thinking of you.

Here's to the fight, your tenacity, and to FIGHTING --
CYCLONE ~~~ # Iowa State University
Posted 12/9/2020 2:17 PM (GMT 0)
Update
As noted above, the immunotherapy treatment I was on has failed and my tumor and affected Lymph Nodes have continued to grow. I was supposed to begin a ne chemo regimen last week but wound up in the hospital for pretty much the entire week with very serious and uncontrolled diarrhea. At first, they believed it was caused by one issue but they couldn't control it with the drugs for that. Then determined it was actually a serious side effect from the Ippilitumab (Yervoy). Once they determined that, they put me on huge doses of IV prednisone. That pretty quickly solved the problem but it was a three day course of treatment and they wouldn't release me until I had the whole series. Got out Sunday and feeling much better. Now on oral prednisone and taking far more of it than I am comfortable taking. However, I backed off a little and the diahrrea came right back so I guess I will have to follow the entire oral protocol as well.

If all that wasn't enough, I was no sooner back from the hospital than I had to take my wife to the ER for a Covid scare. Long story short but we just found out this morning that she was negative. My Oncologist wouldn't start my chemo until they knew we were both negative so I am going to press hard to get started today. With all that has happened, I feel like I am nearly twelve weeks behind on the treatments I should have been receiving all along and am deeply concerned that it is time I may not get back while the cancer has grown.

With all of this, I am going to call a halt to posting on this thread. I want to thank all of you who have read it and taken the time to reply. Your comments have been inciteful and more deeply appreciated. than you know. I may be deluding myself here but I am convinced that there is a bigger story that I need to help tell here on this forum. I have found very very little on small cell PC and what I do find is deeply alarming. Please watch for my new thread that will be titled "Small Cell Prostate Cancer - My Journey " or something to that effect.
Posted 12/10/2020 5:22 AM (GMT 0)
Sorry you’re tx didn’t work out and the side effects. This ca is tough. Ron liver biopsy tissue samples were to small to determine small cell ca and they won’t do surgery or biopsy the tumor located at the top of bladder and attaching to the ureter or wrapping around it. So he is chemo docetaxel and caroplatin. He had 2nd cycle. I not sure his is small cell, if I read right usually the psa doesn’t rise much right? His psa is continuing to raise 16 to 20 to 24.3 in 3 weeks. I am more interested in the mri and pet scan results after the next 2 cycles of chemo. Mayo really had nothing to offer us that our local oncologist didn’t give us. In fact dr kwon said wait 3mo do another mri pet scan and then decide. He may have been basing that on his history also and his past experiences with chemo. This is his his 3 time taking it and docetaxel was tough for him. They also gave him 6 mo without tx, but I not sure he will survive the tx. Just to many other issues developed because of ca and tx . We made it through thanksgiving, we also had our COVID scare, now hopefully for Christmas, and and seeing our son knowing that these are the holidays. But because of the could everyone in our situation are so alone. Just think of the people that are in nursing homes and assisted living or hospitals. I am glad I should have the ablilty to care for him at home. I wish you the best of luck with your tx and will be praying for you and all the forum members. I will probably peek in now then to see how things are going, I will be busy.
Posted 12/10/2020 5:32 PM (GMT 0)
Minn17

I'm certainly no Dr. but from everything I have learned so far, Small Cell does not create PSA or react to treatments for it so it seems pretty unlikely you are dealing with that. In my case, my PSA remains at undetectable levels. If true, it's great news as you want no part of SLPC.
Posted 12/19/2020 9:53 PM (GMT 0)
Hello Sorry I have not followed this posting until today so I may not be up to speed. I did however want to add my brother's story. In 1996 I drove his daughter to the family's vacation spot because she was in a softball championship and missed going with the family. It was a bittersweet trip because my brother had been losing weight and had a pain in his side. He went to one of those walkin clinics hoping to get some pain relief but the doctor on duty ended up saving his life.
The doctor felt a "mass" which turned out to be Non-Hodgkin's lymphoma. It had connected itself to every organ in his abdomen.. We all drove back to Poughkeepsie (NY) and a day later after a 7 hour surgery, the entire tumor was taken out. Poughkeepsie is not know for it's "crack" medical staff or hospitals but the doctor at St Francis hospital did a great job. The good news is after chemo and radiation, my brother recovered and we all thank God for that.
My brother was in the army engineer's and did come in contact with "Agent orange" but no one can show a cause and effect relationship (it was 1973-75)
In any case I hope this is curable as it was with my brother and he had a massive tumor.

Sad to say after years of smoking my brother got lung cancer but had beaten the Hodgkin's for 11 years. He beat back lung cancer 4 years but in the end it was too much. He kept the suffering at bay until the last few days. I hung out with him on a Thursday as he played with his grand kids and that Sunday I rushed up from the city to say goodbye.

The Non-Hodgkins was in 1996 so I'm sure the treatments are much better today

Good luck we are pulling for you.

Glen
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