Friday Morning, February 10, 2023 a member Charles (CSHobie) passed away. His dear wife and caregiver, Elke, posted the news and wrote that based on the conversation with his oncologist and the internal medicine specialist, it wasn't cancer that killed him.
ELKE:
It all started with hypokalemia, on January 9. We were overseas, visiting his family. In 10 days time, we ended up 3 times in the emergency room, where every time they gave him a drip of potassium, which made him feel better immediately. His potassium went from 2.5 to 2.4 to 2.9 by the time we could leave the country. Next day, we visited the Oncologist in his hospital, who continued the drips on a daily basis for 10 days, meanwhile all kind of tests were scheduled. Cancer didn't grow, Internal Medicine couldn't find anything. Potassium was now up to 3.3 but Charles was going downhill fast. Could barely move or speak. And he kept repeating "I'm done.".
In October, the Oncologist had given him another 2 years, based on how well he was responding to the treatment. But before we left on our extended trip in November, Charles wrote a message on the kitchen board for his sons, that was clearly a goodbye. So sad. He was a very proud man, always very physically active and healthy, and struggled mentally with what this disease did to him. No matter how much I tried to convince him that I didn't love him any less than before this disease, he found he was only half the man he used to be, and hated himself for that.
I wish to give one very important advice to all the men here: PLEASE seek assistance from a therapist if you feel you are struggling. Cancer is a terrible thing, and it's normal that we don't know easily how to deal with it. Therapy might help you to deal with the negative thoughts and prevent you from going down the rabbit hole.
God Bless you all.
Written by
j-o-h-n
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Long-term low potassium damages nerves, heart conduction, weak or paralyzed muscle ( including diaphragm and heart), kidney damage, and loss of cellular fluids (causing disruption on the cellular level).
You can see why I get antsy when I read about patients taking calcium pills without checking if they need it first. All electrolyte minerals (Group 1 & 2 in the periodic table: Na, K, Ca, Mg, Li, etc.) are inter-related; taking more of one, may result in excreting another. Our bodies can usually regulate intake from food, but overloading the control mechanisms with pills can upset homeostasis.
TA, reading your blog on the subject is a bit confusing. What’s the bottom line in your opinion for those of us on Zytega suffering from low potassium. I had chronically low potassium While on Zytega and I was given potassium supplements. Is there a better solution? More prednisone?
You are just masking the problem by taking potassium (K) pills. It may raise your serum level to normal, but there may be not enough potassium in your tissues. And IDK the longterm effect of high K (when you take the pill) followed by low K (before the next pill). What is the effect of that see-saw dosing on the heart, etc? Instead discuss one of these with your oncologist:
(1) try adding 2.5mg/day-5 mg/day more prednisone, or switch to 0.5 mg/day dexamethasone
(2) If that doesn't work, try enzalutamide, apalutamide, or darolutamide instead
My husband is diabetic and his oncologist says that steroids would be disastrous for him. I agree that balancing potassium and calcium levels is necessary. It can be difficult to achieve though. There is much for doctors to evaluate and consider.
The steroids they give with abiraterone is just a replacement dose to replace the lost cortisol. It doesn't give him extra steroids beyond what he would otherwise have in his body. This is a common misconception.
How did you respond to the potassium supplements. Did the doctor prescribe them? What strength? How long did you have low potassium, hire low did it go? Is it resolved completely?
Hi George. My potassium levels got pretty low from Zytega. Yes my MO prescribed potassium supplements. It got me back to normal. I’m on a vacation now do back to normal without supplements. It’s been awhile so not sure about the numbers. I could try and go back and see if any info is critical.
Yes, he was taking both. We immediately stopped with the abiraterone. And the prednisone was build off over the following weeks as they said that after years on prednisone, it's not a good idea to stop cold turkey.
The plan was to first get the potassium back up, and then look at how to proceed with further treatment. But Charles decided it was enough. (Elke)
Thanks j-o-h-n I do remember him. The disease and treatment really is harder on some of us than others. The one good thing I read into this is the chance to say goodbye to our loved ones. I hope his find peace.
Sorry for the loss. Always tough to see. I love her advice about seeking mental health treatment. I know what till these treatments took on my guy. He did a pretty good job with it overall, but he certainly benefited from seeking treatment. May he be resting in peace, and may his wife find joy in her next chapter.
Charles, aka CSHobie was a decent, nice guy. You can tell just by reading his past posts. He was respectful, humble and always positive and supportive.
My sincere condolences to Elke from across the pond in the UK. May Charles rest in peace. Way too young to be taken. I hope that Elke takes the time to heal and remembers all of the good times, the laughter.
Reading his profile he was very young . Even younger than me but with similar characteristics in Gleason and PSA at dx. His moved through him so much faster and destructively than mine up to this point that its hard to get my head around it. This disease is so different in all of us even when in appearances and and test results it seems so similar. It is mindboggling.
j- o-h-n , You are a great servant to this community . Welcome back!….I find Elke ‘s comments truthful and relatable . Thanks Elke ! 💔Ive felt the same as he did , self loathing . It is kind of a sad way to go . Rip cshobie! Thanks j-o-h-n
Thank you for posting and much sadness and condolences to the family!
I find it unacceptable when they say it wasn't relates to the PCa though... As these conditions just don't happen on their own. As a causation of drug therapy, then it was because of it (PCa). Regardless, it is a sad day nonetheless.
Charles always said "If the disease doesn't kill you, the treatment does".
I noticed he had a very hard time saying goodbye to his mom and sisters. They are such a nice family. For me, they feel more like my family than my own one ever did (we weren't close at all).
That, and the fact that he was becoming very dependent on me (couldn't lift things anymore, he loved to drive, but that became harder to stay focused, now being sick, I was washing and dressing and feeding him,...) and a fight with his ex who didn't even want to give the life insurance money to the kids but keep it for herself, made that he probably thought it had been enough. He always said he did not want me to have to take care of him, as at that point, he was dying anyhow, so that being a good time to pull the plug. I know he did it also out of love for me, but I would not have minded at all to take care of him. (Elke)
Ekle, I’m staying up late, reading these messages because I went to the ER last weekend and discovered that my potassium is low and my red blood cells are messed up. It really hits hard thinking about what the treatments can do. Was his potassium low for a very long time, like several months, or did it change in less than a month? It’s a scary thought that a treatment can take you years earlier than the cancer might. 😞 May Charles RIP. I believe he is.
Take time for yourself now. Family, friends and clergy can be helpful--but sometimes not. At times it can be best to indulge in cherished memories alone that remind us how lucky we have been.
We learn to live with a significant loss as best we can. With time, the initial pain of separation which can be almost palpable for some, lessens. Grief has stages and is different for everyone.
Be strong when you need to be. Take time to rest and heal when you need to. Do --take that time.
I’m so sorry to hear of ANOTHER fallen brother. My heartfelt condolences out to his loved ones and family. I hope they find solace that his struggle is over and he is free from pain and suffering now. Monday Feb 20th, 2023 2:09 A.M.
Thank you for posting. It seems even in death he's helped many with the knowledge learned in these comments and his wife's words on seeking mental health help. Hoping good memories wrap her in warmth.
Thanks for this post, j-o-h-n-. I know what Elke was talking about when she said Charles hated himself and was only half a man. I too feel like half a man and went into a deep depression. Like Elke with Charles, my wife loves me no less because of it and her love brought me back to the surface. Sorry for her loss. It seems like he knew he was at the end for some reason.
Thanks j-o-h-n and especially thanks to Elke. Sound advice. Charles clearly had a very positive presence on this site and no doubt in his life outside of Pca.
He was an amazing guy. Very kind, positive, a bit of a dreamer (and I was the grounded one, hahaha). We created lots of amazing memories, and although at this moment whatever I do reminds me of Charles and makes me so sad, I know that, given time, I will find strength in all those memories. (Elke)
CSHobie said in his own bio that if the cancer didn’t kill you, the treatment would.
Sadly, based on his last post about low potassium from Zytigia it seems he was right.
Damn shame.
I might quibble that ultimately it was the disease that caused his death because the treatment is so intertwined with it, but that’s irrelevant in the end.
John, how long of a period did Charles have low K? Less than 3.5? According to your account, it was only one month from hypocalemia to passing. That’s really fast. It caused his paralysis, so i presume it was low for a couple months? Maybe not? This is something we all need to be aware of, so we’re can try to avoid it. It sounds like the potassium shut down his muscles and his heart, combined with a loss of desire to live with the paralysis. It’s a heart wrenching account.
I'm sorry I can't answer your question(s). I was merely being a conduit in reporting the passing of Charles (CSHobie), one of our astute members. Take care....
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Update on my Dad: 4 months since last PSA and Provenge
Elgie Starting Xtandi
