I just wanted to drop in and say hello to everybody. I haven't been on here much recently but I do have a very good excuse.
Back on April 30th 2022, I went for what should have been a fairly routine scan at the Marsden. My back and ribs had begun aching a lot but I had convinced myself that it was due to working long hours and the drugs. The consultant wanted to talk to me on the phone a few weeks later. I guess I should have predicted what she was going to say but having had such a good PSA reading for a long time, I never guessed what she was going to tell me. "Your cancer has spread. You are looking at chemotherapy." I was truly shocked and felt that I was back to where I started, possibly in a worse position.
They suspected lymphoma as my lymph glands had swollen up. I had a biopsy of the lymph nodes in my back whilst inside a CT scanner and they wanted to do one in my spine but the consultant doing the biopsy decided this was too risky. PET scans and a biopsy of my hip also followed. A diagnosis of Stage 4 Nodular lymphocyte predominant Hodgkin's lymphoma was made. Only 95 people a year in the UK are diagnosed with this. It had spread to my ribs and spine. That's what had been causing the pain (probably).
Chemotherapy was arranged to start on July 28th. Then I tested positive for covid. Eventually it begun on 12th August. Eight cycles at 3 week intervals. I've now done six sessions. And I'm obviously hoping for a good result. I've had two scans since the beginning of chemotherapy. First one was good progress, second no change. But I hope to finish next month.
So, that's where I am. Perhaps not relevant to discussion of advanced prostate cancer but I'm still being treated for that as well. I've had to take six months off work due to being immuno suppressed. I hope everybody is doing well. I try to walk every day to get the blood pumping the drugs around the body. I feel very lucky to still be alive and despite all the treatment, still find some pleasures in life.
Tom
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londoncyclist48
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big warm fuzzy ( manly ) ehug out to you brother… hoping your chemo goes smoothly and that you have great results that add years to your life. That’s rough stuff , you are one tough hombre brother.
Wtf. I couldn't have put it better myself. I can accept the fact that I have advanced prostate cancer as my father had it but how the hell I ended up with a very rare type of Hodgkin's at the same time, I have no idea. According to the doctors, the two are entirely separate and not connected. Thank you for your good wishes.
AHH mate. You have been thru the ringer on this. Praying for a good continued response for you. It is good that your under the Royal Marsden. Keep enjoying the walking. Tc my friend.Graham
Thank you to everybody who has commented and your good wishes. This was really just supposed to be a quick update as I hadn't checked in in a while but your positive thoughts are much appreciated.
Good question. I don't know. But I'm on a combination of Rituximab, Vincristine, Cyclophosphamide and Prednisolone. They're attacking my immune system so I am therefore immune suppressed. How this all works, I have long since given up on trying to understand. It's all gone too complicated for me. And I'm still on hormone therapy for advanced prostate cancer.
WOW - thats the message we all dread - hang in there and fill each day with optimism and joy at being alive - as long as it lasts. - hope thats a long time for you!!
Sorry to hear/read your current predicament... Crazy rollercoaster ride this thing is that we all find ourselves unwillingly riding! Who invited us to this amusement park because it's not amusing at all...
But keep up the good fight, and Keep on Truckin'
(Peddling) lol
Positive vibes and thoughts along with prayers heading your way!
I am praying and wishing you all the luck in the world on your continued journey. I hope your pain will subside and keep on fighting the fight. Happy Holidays.
I am always amazed at the strength that our warriors share on this site. Sharing it helps make all if us a bit stronger. Thank you and positive thoughts are headed your way.
As a cyclist myself, I know how much one misses not riding or misses being able to ride as well as one is accustomed to. But you’re a cyclist, and cyclists don’t quit! All the best! 🦊
Wow! So glad you are doing better and in good spirits. Keep it up!
Keep swinging. Life can be so cruel and unforgiving. Try to control what you can as so much seems against you at the moment. Try to think of something random you've always wanted to do and do it. Keep strong brother DD 😎.
Hi Tom. Well it sounds like a rough patch to say the least and still you are standing on your feet. I love that you said you've kept the blood pumping for as my dad is very far advanced I can say one of his biggest mistakes and my own during diff illness is not being athletic . Fir him,he just never exercised and it has hurt him now that muscle atrophy has been inevitable due to back issues and other serious issues . So damn I'm proud of you and it's lovely to put a face to the story .
Please always remember what it's so easy to forget in illness. You have illness passing through you and which your body is destroying ,but you are the handsome lad in the pic ,not a list of drugs or treatment plans . I believe that attitude has given us so much borrowed time with my father .
Next ,I noticed you said second chemo no change . My dad's cancer barely changed in seven years, but he did get a second cancer . The words," no change" are not necessarily negative since the first chemo did show some changes and they were sustained so you ARE stopping progression and this is thought for hope . My dad did every treatment and sometimes there were mets that shrunk a tiny bit but no change became the hope and the words that could turn our fears into a calm GRATEFUL SCAN RESULT DAY.
I fight auto immune issues and I'm not a stranger to chronic illness and pain from a young age, so I can commiserate though I could never pretend to know what my dad fights . I miss him as I write this as he's been knocked out from apts and letting you know I support you and others and have vowed to do so should anyone need a non judgmental ear or a place to scream ,cry, or lash out until you laugh.
I too want to extend greetings for the holiday season to all as those who've seen my posts know we are struggling more than ever . Part of me had to shut down bc I was crying from the second I woke up even though my dad would video me with a smile . So as we try to figure more out and see if nutrition and infusions help at all ,I will only be on to reach for support, but if I get a pm please know it brings me solace and helping others also helps me . I just took a break bc my brain was not able to think of anything else and I'm trying to find a way to deal but it is my dad who taught me ,no matter what even when you can't help yourself help others and you will always love with passion and joy, so my heros, my heart is with you all for this holiday season .
Tom...you just stated what I envy most about you .. that you still find joy and if ever you shouldn't please reach for support . Tom I wish I could take that walk with you and fight the way you are but you just inspired me to try to get movement despite my pain and depression today . As you listed what you've just been through I thought damn and he's still here spreading joy. Ty for being a beacon of joy and hope ,persistence and devotion to the tiniest pleasures in life .
I'm going to my dad's to lay in bed with him and watch shark tank tomorrow and it's bc of your post that I'm going to get off my ass ,stop hiding, and go bring some joy. Happy holidays to all.
Keep rocking around the holiday tree my friends . You all show me what it means to embrace and love life despite obstacles .
Health ,love ,and a hell of a lot of laughs to all of you through the holiday season,
Hey, just saw a thread with your comments and wanted to send out a quick shout out. Love your attitude, hate what you’re dealing with, and sending encouragement your way from California. Fight on.
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Hello from down under 
Thank you everybody
Advanced Metastatic Prostate Cancer
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