Waiting and very worried

Hi Matt Mattjm and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ my be different from the type you have I do appreciate the challenges of this journey rather well.

The diagnosis period is very challenging and many people including myself will have been in the exact same position.

With over 60 types and sub-types of Lymphoma time has to be taken to get a clear Diagnosis as well as clear Staging…. once all these jigsaw pieces are put together a treatment plan can be put in place.

When it comes to treatment there is not a one size fits all as there are many types of treatments and the best one for your situation has to be chosen.

To encourage you, by the time I went for my first chemo back in Dec 2013 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 and the pain was off the scale.

I had an initial 15min blast of chemo 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, I then went on to have 6 Cycles of the chemo that is used for my type and by the end of my 2nd/3rd cycle the swelling was well down and gone by the end of the treatment.

My case is complicated so I did go on to have further treatments but I turned 67 back in November and I am living a great life.

Its all about holding your nerve at the moment….. but you will get there.

You are going to get a lot of information and you will have questions for your consultant so this lil will help you start jotting down all the questions you need answers for Questions to ask your medical team about Lymphoma

I am always around to help out, answer questions or just to listen.

Take a big breath…. then another….. this can be done.

Thank you for sharing your story

It's so hard isn't it, the shock of it when I was fit and well. Can't sleep through the pain and anxiety and when i do wake I have to dig into my pain killers which then knocks me out.

How do you manage now?

My heads all over the place with mornings always being hardest as the reality hits again

Thank you again 

Hi again from a very snowy Inverness ️ 

The shock on hearing the word cancer is initially debilitating but once you know more and get to know your type of Lymphoma the more the noise between the ears will call down.

Remember that although Lymphoma is the 5th most common cancer in the UK it is one of the most treatable with very good outcomes…… even at stage 4 as I was in late 2013.

Pain killers are there for a reason - use them, don’t suffer and if you need to sleep - sleep it’s the way your body recovers.

It took a good few months before I got into treatment so I was in some heavyweight opioid pain medications so was seeing things crawling in the ceiling at times……. I had been on my journey for 14 years by now so had a clear understanding as to how this was going to pan out so I knew I had to push through.

My presentation (where it was at and how big) was very unusual for my type of rare lymphoma so I had to have more biopsies, scans and my case was sent out for review, I was ready to fly down to London to see a top consultant but we managed to have a consultation on videoconferencing (yes we did this before covid was a thing) and he advised on the treatment plan.

My story is long, traumatic, painful……. but I am still here living a great life.

You can see my full story by hitting thus (LINK)….. but make s cup of strong coffee.

I am still incurable but I know that over the past 7 years since my last treatment there are a few new treatments come on line…… back in late 2015 I was told the the treatment I was having was my last roll of the dice…… so it proves that our mindset over all these years was true…… ‘There is always Hope until Hope runs out’

How do I manage?…… I don’t let my ‘uninvited lodger’ define the way I live….. I strive to define life and honestly we are having a great life….. I say this as I have very good friends who are ‘suffering’ life with MS and Parkinson’s…… and have no Hope.

Yes I am now 67 and my body has went through more than many my age but I will do my 5k on my exercise bike everyday and will be working for my daughter tomorrow afternoon.

At this point in time you will most likely not see Hope……. but believe me when I say there is lots of Hope.

Keep chatting as this will help you get year head into a better place.

Thank you so much. You have really helped me

I will be back in touch soon

Take care and thank you again

Really struggling the pain is too much and I still have at least a week before any treatment would happen pet ct Friday and the appointment 25th with specialist. Don't think I can carry on much longer pain is too much

Hi , my name is Chris ... may I ask you some questions please? I think I have lymphoma

Me too ... I am worried too but I know someone who got it when he was 41 and he is 74 today

Hi Chris Chrisp234 and welcome to the Community.

Sorry to hear that you think you have Lymphoma....... The Symptoms and Diagnosis of Lymphoma is not that straight as some symptoms can be attributed to other health conditions.

I am assuming that you are seeing your GP and working through the tests and health checks that they can do to rule this in or out?

Always around to chat and answer questions.

Hi Highlander. I can never get a straight answer from my doctor unfortunately.  Will need a second opinion with another GP i guess. I have had achy lymph nodes everywhere but no swelling except for those two under the chin. I have had this 2 months now. My blood workup showed a slight elevation after I got the double dose flu vaccine. Really slighty increase. Next blood test 3 weeks later is normal All CBC is normal. All 4 additional blood tests taken every two weeks also show normal. WBC, RBC, PLATLETS, HEMOGLOBIN, HEMOCRIT and all urinalysis also normal.  I have no fever and no night sweats. I had covid on Christmas eve that lasted 10 days ... no bad cough. Fever for two days - it was no problem. My lymph problem started middle of Nov. I had a cold and then as the cold was ending I had my double flu shot ... few days after that it started. I have exhaustion. Just don't feel my usual self that is for sure. Doctor says I have an infection but its not a bacteria infection he says. Likely a virus that will play itself out - some virsus taking longer than the norm these days. He thinks all will be restored once the virus burns itself out. HEP C - no detection. Can you please suggest other tests to rule out lymphoma or do you think my normal blood results is a good reason to think it is not lymphoma. Your opinion is much appreciated. Have you ever heard of a person having achy nodes that was not from lymphoma? Thanks Bud. Your time is much appreciated. Hope you are doing well.  I feel like I am in this alone. 

If your pain relief isn't working, then contact your doctor.  Mine was being increased every 5 days for a while until the ideal combination of short term and slow release was found.

Like Mike, I had facial deformities from the swelling of my mass and I had double vision in one eye.  My chemotherapy was R-CHOP and before starting on the infusion drugs I had to take prednisone for 5 days.  The swelling reduced enormously in those 5 days, as did the pain.

I remember the first day I met my haematologist and she outlined my treatment.  When I said I hoped it would put me in remission, she responded that she hoped to cure me.  Her confidence was incredibly helpful when I had little myself.