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Small Cell Prostate Cancer - My Journey

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Posted 6/23/2021 1:44 AM (GMT 0)
Good to hear. Hope next time for even better results.
Posted 6/23/2021 2:16 AM (GMT 0)

Hello, RandyD ~~~

I know what some GOOD NEWS can mean to a fellow, leaving the doctor's office.

Really, really thankful to hear your good news. Your new medications are keeping things stable and IN CHECK!

I remember a time that I got some good news from my doctor and sang along with every song I heard on the radio, as I drove home.

You deserved some good news ---- and you've got a proactive plan in place already, with timely follow-ups.

Sometimes, I find solace in remembering, "As far as my health, I am doing everything I can do, in terms of my healthcare."

You are doing the same, RandyD --- you are following up in all ways possible, and I can tell from your posts that your doctors are really looking out for you and your case.

Thankful to read your update today ---- it's a good day to hear some good news!

I will watch for your next post, RandyD!

All my best, from "one brother to another" ~~~
CYCLONE ••• # Iowa State University
Posted 8/17/2021 6:44 PM (GMT 0)
UPDATE - I have my next scans this Friday and will get the results on Tuesday. I have developed a bit of a shortness of breath issue recently and fear that I may now have lung metaatasies. I guess I will know soon enough

In the meantime, I have me with an Endocrinologist to see of there is anything that can be done about the deep fatigue I feel. It has become very difficult to make it through a day (including work days) without rushing home an taking a nap. He is looking at thyroid, pituitary and calcium levels to try and adjust them. He surprised me when he added a T test to my labs this week. He said that if T was low (and it will be as my PSA is still .0.01) that he would consult with my Oncologist about adding T therapy to my meds regimen. He understands the risk but felt that improving my quality of life may be worth the risk. At this point, I am in agreement with him. I just hate watching other people (family mostly) doing things for me that I should be doing myself. That has probably been one of the biggest challenges of this entire ordeal.
Posted 8/19/2021 3:25 PM (GMT 0)

Hello, RandyD ----

I always follow your posts, and appreciative of your update.

You can be assured I will be sending POSITIVE VIBES your way, for Friday's scan.

I hope you get some answers, in the form of GOOD NEWS!

I give thanks that your PSA is staying LOW and STABLE.

We have many common threads woven into the story of our treatments, including chemotherapy, radiation, & ZYTIGA.

My oncologist goes through my labwork every month with me. I run labs earlier in the day, grab some lunch, then return to see my oncologist. By then, he has received all lab results, and it leads to a much more insightful consultation.

He watches various components on my lab work. You described "deep fatigue" ---- please ask for a simple FERRITIN test, to assess iron levels. Some of my medications lead to iron deficiency, so my doctor now tracks that, but simply running a ferritin test.

I take an iron supplement now, and I have added some iron-rich foods to my diet. Everyone knows a steak can bolster iron, but a cup of POST Grape Nuts cereal has a lot of iron in it, too. Be sure to ask for a ferritin test --- that really helped my situation and my energy level stays high.

Let us know how the scans, tests, and consultations go! I will be thinking of you on Friday and in the days ahead, RandyD!

Handshake, fellowship, camaraderie ----
CYCLONE --- # Iowa State University
Posted 8/25/2021 1:18 PM (GMT 0)
I just got the results back yesterday from my scans last week - no changes!. I have been on Lynparza now for 4 months and so far it has held my tumor in check. For a drug that is not even approved for Neuroendocrine PC, I'm pretty happy
I do have a dilemma though. I've been referred to an Endocrinologist for help with both thyroid issues and vitamin D defficiency. When I complained about my constant, deep fatigue, he suggested that I consider going on some kind of testosterone supplement. I had my last Lupron injection in May 2020. I took my last Zytiga pill in September of 2020. Despite the time lapse, my PSA is still <0.01. My T tested at 101 against a norm of up to 950 or so. My dilemma is do I improve my quality of life by boosting my T score and risk having my PSA rise (and all that goes with that) or should I just be happy where I am and deal with the fatigue? Thoughts would be deeply appreciated as I have no idea what to do.
Posted 8/25/2021 5:51 PM (GMT 0)
Glad to hear that you have no changes!! Vit D is so important. Did your onc give you the number where your vit D is currently. My doctor told me that a good number is as close to your age as possible. My husband and I both tested low a few years back. I starting taking vit D every day and I'm back to normal levels. My husband did not take this seriously. His levels are back to normal now after the cancer diagnosis.
Take care,

Brooke
Posted 8/26/2021 5:11 PM (GMT 0)
Excellent news Randy! Don't know about thyroid issues but it is easy to raise your Vitamin D level with a supplement. Mine was in the 20's when my MO first tested for it. Now I'm in the 80's. I get 600 iu with my calcium and take another 2000. What is next on treatment trail?
Posted 8/29/2021 10:51 PM (GMT 0)

Hello, RandyD ----

Great news on the continued low PSA levels. Thankful to see that!

Your journey with LYNPARZA continues!

From the time of my diagnosis, my doctor added Vitamin D to my daily regimen. I also get outside daily for trail walks --- and walks at lakes and county parks.

Let us know how the potential thyroid issue unfolds --- I think they can test and address that. I know several people who had a thyroid issue, and medication helped immensely.

Did you get a ferritin test, to assess iron levels? My doctor discovered I needed to bolster my iron levels. He now orders an occasional ferritin test, when I do my usual labs, just to monitor it.

You're really drilling down into things, staying proactive, & addressing specific issues with your medical team.

Keep us up-to-date --- let us know how you're faring !

Sometimes some simple changes can make a profound difference!

Sounds like your doctors are ON IT !

Keeping in touch -----
CYCLONE - # Iowa State University
Posted 8/30/2021 12:14 AM (GMT 0)
This thread has some good TRT reading material in it from DjinTonic and Bobbiesan

https://www.healingwell.com/community/default.aspx?f=35&m=4257833
Posted 8/31/2021 6:02 PM (GMT 0)
Thanks everyone for your responses. My thyroid level is now normal. Vitamin D I don't have results on yet. My big question is the T level. Mine is 101. I can raise it with T Replacement but my fear is that it will also raise my PSA and start a whole new cycle of issues. Is the risk worth a better quality of life or am I just trading for a shorter quantity of life
Posted 9/30/2021 11:14 PM (GMT 0)

I'm bumping RandyD's detailed and insightful thread to the top, for a comrade in need this evening.

My best,
CYCLONE --- # Iowa State University
Posted 10/1/2021 7:07 PM (GMT 0)
Thanks Cyclone,

While I hate knowing that others my be facing what I face, I hop that this thread will be useful to some. BTW, the only way that I am aware of to confirm Neuroendocrine PC is with a surgical biopsy like I had. Yes regular PCA con morph into Neuroendocrine PC Regular PCA tends to metastisize to bone while NEPC tends to move to visceral organs.
Posted 10/15/2021 5:28 PM (GMT 0)
Time for an update:
I had my 6 months on Lynparza scans on Tuesday. I was supposed to meet with the Dr. today to get the results. However, he called us Tuesday late afternoon and commented that since he knew I hated waiting for results that long, he thought he would short-circuit the normal process. Of course the quick call scared the daylights out of both my wife and I but he pretty quickly got to the point. My scans showed no changes in the tumor(s) but did find a pulminary embolism in my right lung. He said it was small and we caught it early. I am now on Eliquis for that. He wants me to go 3 months for my next scan and seems to believe that I will be fine.

Of course, I'm very grateful that the scan showed no changes in my tumor, especially since I am on an experimental drug, but the clot is still distressing. Just another brick in the wall I guess.
Posted 10/15/2021 7:54 PM (GMT 0)
Stay the course, Randy! "No changes in the tumor(s)" is nothing to sneeze at!

We are all rooting for you!

Djin
Posted 10/15/2021 8:13 PM (GMT 0)
Beats a poke in the eye with a sharp stick. Glad they caught the embolism early. Thanks for the update Randy and stay strong.
Posted 10/18/2021 2:30 AM (GMT 0)

Hello, RandyD ----

Always glad to hear from you here, and it's hard to believe you've already been on LYNPARZA for six months already!

Great news --- NO TUMOR GROWTH!

Steady, steady ... STABLE is good news! Here's to LYNPARZA, keeping things in check!

I'm hoping the ELIQUIS helps resolve the pulmonary embolism. Positive vibes --- healing thoughts!

Your doctor went above and beyond the call of duty --- reaching out to you personally --- with immediate results.

That shows your doctor's dedication. We all see how busy our doctors are, on any given day, when we enter the waiting room. I'm thankful you heard directly from your doctor, in such a timely manner.

Hats off ---- to doctors like yours!

I think the follow-up scan in three months sounds timely --- prudent --- and PROACTIVE. There's peace of mind right there --- knowing that a timely follow-up scan is already booked. Your medical team is LOOKING AFTER YOU!

Stay the course, as you have been doing, RandyD !

Keep facing forward --- looking towards the future!

With all my best, from here in the Midwest ---
CYCLONE --- # Iowa State University
Posted 11/13/2021 3:59 PM (GMT 0)
Sorry for the lengthy delay for those of you who replied. I've been off the site for a while. Things are still about the same. I'm off work right now on disability. I needed a break! I go back in a week. Will probably work another 2 months or so and the call it a career. Should be able to leave on long term disability.
I have developed pain in both hips. Had a bone scan yesterday and waiting for the results. Probably arthritis but it could be bone cancer. Hoping for the best.
Posted 11/17/2021 11:06 PM (GMT 0)

Always follow your posts, RandyD ---- let us know how your scans went.

Meanwhile ---- start that retirement countdown. Finish strong!

Sending my best,
CYCLONE --- # Iowa State University
Posted 12/15/2021 6:55 PM (GMT 0)
I just got the results from my latest scans and am happy to report that there has been no progression. Given the depressing reports I read on how aggressive small cell is, I consider myself very fortunate. 8 months in and no changes! That was the median progression free survival in the drug clinical trials so I consider it a big milestone
Posted 12/15/2021 7:00 PM (GMT 0)
Thanks for the update; Very glad to read that!
Posted 12/16/2021 11:28 PM (GMT 0)
Fantastic Randy. Enjoy the holiday season!
Posted 12/17/2021 12:42 AM (GMT 0)
That is terrific to hear. Will they ever attempt to remove the tumor? How are the side effects of the treatment? How is the fatigue you were dealing with?
Posted 12/17/2021 1:02 AM (GMT 0)
Sounds like a milestone to me too. Great to hear! Have good holiday.
Posted 12/17/2021 7:13 PM (GMT 0)
Prayers Randy.
What an amazing story.
Posted 12/21/2021 4:22 AM (GMT 0)

Hello, Randy D ---

I'm really thankful to read your update. I know what it means to receive news like that, following scans.

The words "stable" and "no evidence of progression" are worth everything!

The holidays are around the corner --- the good news you received on your scans are your first holiday present, good sir!

Here's to the NEW YEAR ahead, Randy D.!

CYCLONE - # Iowa State University
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