Just a brief hello from a newly diagnosed Lymphoma patient, just starting the journey, a well worn path for so many of us. I'm 65 years old, living in East Anglia with my wife and I have three grown up children living in the area. I've even got 5 grandchildren, how did I ever get so grown up?
Had a painful upper arm for a few weeks, beginning in mid-January, back and forward to the GP while everyone collectively shrugged their shoulders and said 'I wonder what that is?' My arm got bigger and bigger, painful and sore during the day, but dam painful at night. Ultrasound, MRI, AT scans and PET scans, then one day in March the consultant orthopaedic sat me down and said the words...I'm sorry to tell you that you have cancer. Who me? That can't be right....I've got a sore arm, that's all. My brain just shut off after that, because of Covid I was on my own at the hospital, so whatever the doctor said after that I just heard 'Blah, blah, blah....have you any questions?' I didn't hear anything after 'You have cancer'. So I went home to pass out the good news. What kind of cancer and what stage, everyone asked? No idea, says I.
Fast forward a month and I have Stage 4 High Grade non-Hodgkin lymphoma, specifically Diffuse large B-cell lymphoma. I'm gob smacked. How can this happen?
I've started on steroids, and will be starting on R-CHOP chemo in a few weeks, on my 66th birthday, to be specific.
I'm feeling shell-shocked, obviously very worried about what might happen, but now that its upon me then there's only one possible thing I can do, and that's to try and stay positive, take the treatment and play the odds. This type of cancer is treatable, and with a fair wind and the best the NHS can do for me then I'll come out the other side.
One day I'll look back on this and laugh, eh? So let's see.....
PS....the steroids have reduced the swelling in my arm after only a few days treatment, and its nowhere near as painful at night, so I'm getting some kip. Progress already.....
Hi again and well done navigating across to this corner of the Community. Although my type of NHL is different I know this journey very well.
Good to hear that the steroids have reduced the swelling in my arm……. this is how the treatment works and the chemo will build on this.
By the time I went for my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner…… you can hit my community name to see my very long story.
What you can take from this is that regardless how challenging things can get there are ways of treating this.
When I was in having my main treatment there were a few 70-80 year olds in the exact same position with same type and chemo and they did very well.
Always around to chat.
Mike - Thehighlander
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Hi, just read your story and thought I would share a similar experience that my husband had. He started with a small lump behind his knee and the GP said in January that it was a fluid filled ‘Bakers cyst’.
The lump got bigger and walking, sleeping / normal everyday things became more and more painful and the GP prescribed painkillers and anti inflammatory drugs - he also made a referral to the consultant but said it could take months as it was just ‘routine’. After a month and another call to the GP (with no action) we decided to go private.
To cut a long story short within a week my husband had seen a consultant, had 2 MRI scans and referred to a hospital with suspected soft tissue sarcoma and urgent biopsy. The result was NOT soft tissue sarcoma but Lymphoma, which at the time was a very good outcome as sarcoma would have meant he would have lost his leg (the consultant’s words) !!
it was a total shock as he has never been in hospital for anything, has never had to have medication, doesn’t smoke and tries to eat healthily.
He has now had 3 cycles of R-CHOP to date for the confirmed DLBCL (probable Stage 3) and is tolerating the treatment really well. The lump reduced very quickly after treatment started which was a relief, so fingers crossed that chemo will do it’s job, but it’s a very scary time.
I hope your treatment is going OK ?
Hi Marge, nice of you to share your husband's experience with me, it sounds remarkably similar to mine. I was back and forward to the GP and hospital for months before they finally got a diagnosis.
Then I broke my arm just as the chemo was due to start, so that put me back by about a month.
I just had my second chemo day yesterday, I'm tolerating it pretty well, and the swelling on my arm has reduced dramatically. I've got a PET scan booked for 4th July which will confirm whether the RCHOP is doing what it should, so I'm very hopeful of a good outcome.
Keep in touch, let me know how your husband gets on...