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The long middle stretch
As I approach my 3-year cancer-versary in a couple of weeks, my new oncologist today again confirmed that even though I'm stage 4 and using drugs to control my cancer, it's reasonable to call my current status "full remission."
He suggested that I'm in a long stretch now of indeterminate length (possibly many, many years) before anything changes, and that I wouldn't need appointments and blood work every 3 months if I weren't in the IRONMAN/TruNTH study.
As it is, we decided to make every second appointment a telephone appointment, since all we do is chat anyway ("Everything ok?" "Yep, no changes, except the hot flushes and fatigue aren't as bad as last time and I've been more active." "Any new pains?" "Wouldn't know with the neuropathy from my spinal compression." "Peeing ok?" "Yep" etc. etc.)
So onwards with the extended life and all the second chances I didn't think I was going to have back in 2021 when I was lying flat on a hospital stretcher, paralysed, while they gave me "the talk" about an incurable cancer diagnosis, or afterwards when I was making notes about my finances for my survivors.
Don't give up, folks, even if the news sounds grim at first. We're not through yet.
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good job. Keep up your contributions to us all.
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9 ReactionsSo very happy for you North, we all need good news to help in the fight. You give encouragement to the rest of us. Best to all.
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9 Reactionsgood stuff and onward together.
(let me be certain about your note). you are staying on medical treatment for PCA but the doctor doesn't want you to do blood work, but you are doing so only because you are on a study? that seems interesting at the least, how would you know that the cancer remains in remission without doing blood work?
keep the faith and thank you and good luck!
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4 ReactionsHe said I'd be OK with bloodwork every 6 months instead of every 3 if I weren't in the study, because I've been stable for nearly three years.
His concern was just the extra hassle for me, but I said I don't mind (there's a hospital lab a short walk from my house, and I get the results in a couple of hours; I pop across the street for a masala chai for a treat afterwards).
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8 ReactionsThis is great news and I am super happy for you. Would you please consider providing some details about your current diagnosis. For example, upon diagnosis what was you PSA? Are you stage 4 de novo? Where did the cancer go - bone, lymph, organs, or a combination? Are you high volume or oligometastatic (few metastases)? What was your treatment and medications? Did you do triplet therapy? Did your treatment include radiation? Did you have any genetic or genomic testing done? How fast did you get to undetectable?
I have passed the 2 year millstone and with the grace of God will be where you are in about 9 months. I get Xgeva every 6 weeks and an Eligard shot every 3 months. So, my blood is pulled every 6 weeks (i.e., PSA, Testosterone, etc). I asked my doctor when she thinks I can relax and we could spread the tests and she basically said never. It was very upsetting to hear. It sounds like your doctors is very positive about your recovery and the prospect of you OS.
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6 ReactionsThank you for the post. Very encouraging for all of us regardless of Stage
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4 ReactionsNorth , Sounds like amazing progress! Thanks for sharing . Keep posting your recovery positives , its so encouraging .I do a lot of telephone appointments with my team, very useful if your prepared for call. . James on Vancouver Island .
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4 ReactionsHey North, Congratulations on your ‘promotion’! You may or may not know this but you are an inspiration to many of us on this board.
Whenever I want to think ‘why me?’ I immediately think of you and everything you’ve been through with this disease; you never give up, you never back down and you’ve persevered through all the treatments and meds to come out on the other side.
I simply have no words to thank you for all your constant input, suggestions and mind boggling knowledge.
You have made me rethink my own personal case and what had once been viewed with dread I now see as almost trivial by comparison.
I wish you many, many years of life, joy and fulfillment….BUT….
Never LEAVE this board - we still NEED you!😊
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7 ReactionsSomething to inspire us newbies! 🙂
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4 ReactionsWhat a great post to read to start my day. Best wishes for many many good years.
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4 Reactions