But it's only a sore arm?

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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)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  •  Sorry to hear of your diagnosis and wishing you all the best with your treatment. I’m currently having chemo for DLBCL ‘double hit’. Lots of support and good info out there on the MacMillan and Lymphoma Action websites. Hugs to you and your family Blue heart

  • 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...

    Steve

  • Hi, thought I would post an update. Unfortunately R-Chop didn’t work, so R-GDP was started but after only 1 session it was obvious that this was not going to work. My husband was put forward for CAR-T therapy which he had over Christmas and New Year with 17 days in hospital. It was a difficult treatment but he is recovering and getting a lot stronger with each day. He had a PET scan last week so we’re waiting for results.

    it would be good to make contact with anyone that has gone through CAR-T to share experience and what to expect going forward …

  • Hi  and thank you for your update. It sounds like a challenging journey but good that he is getting stronger.

    There have been a few folks go through CAR-T or supported family through CAR-T have passed through the various groups.... a few have posted in our dedicated Stem cell transplant support group as CAR-T is not a million miles away from going through Stem Cell Transplant (SCT)........ (i have had 2 SCTs)

    The quickest way to search for old posts is to use the Site Search Tool Mag near the top. Put in CAR-T and select 'Anywhere' and this will bring up all the posts.... You can then look through the posts and if you want to connect into a thread just hit reply and see if the members are still on the site.

    As I said CAR-T and SCT are very similar..... but completely different if that makes any sense....... but the post treatment recovery will be very similar so you may want to have a look at this link Life after a SCT - A Survivor's Guide as its where we have collect thoughts about the post SCT life.

    Always around to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi  , I've also recently completed CAR-T after R-GDP failed. I got out of hospital on 10 December after 12 days in (it would have been longer but I was given tocilizumab after my CRS started to get bad and that cleared up all the side effects within a couple of days).

    I had the results of the 1-month scan on 30th December and the vast majority of the lymphoma is gone. There was a tiny amount remaining, which even the consultant couldn't see on the scan (the radiographers have super vision it seems). The hope is that the CAR-T cells keep on doing their thing and that it'll all be gone at the 3-month scan. If not the consultant said "we'll give it a quick zap with radiotherapy, which should sort it").

    I was reassured multiple times that its totally normal to have have some lymphoma still present at the 1-month stage and that, as long as there's some response, the CAR-T cells should keep on working away.

    I'm now 2-months on from treatment, and I've just had my central line out. I still have a few aches and pains and some fatigue, but I'm much improved (and I have hair again!). Life is steadily returning to normal. Good luck for the PET scan results and let us know how you get on.

  • Hi Aeolai, Thank you so much for your detailed reply, my husband went through the same in hospital and had to have tocilizumab when his temperature spiked at 40C and blood pressure dropped within 24hrs of the cell infusion.  The doctors talked about intensive care but the drug worked within a few days and he started to get over the CRS side effects. 

    The PET scan results showed the lymphoma greatly reduced (but we knew that as he has a very large tumour behind his knee so the change is very visible).  The consultant was very pleased and reassured us that the CAR-T cells would continue to work to get rid of the remaining lymphoma. 

    He is actually so much stronger even at 6 weeks post treatment, so all seems positive. 

    Just something I was going to ask the consultant was how long before immunity  and Bcell antibodies take to recover - we have been extremely careful and have not mixed with people for months so are nervous about meeting indoors. Not just concerned about Covid (we have been given a Covid vaccination schedule starting at the end of March) but infections in general? Have you been given any advice on this?

    thanks again for your reassurance, it really helped.