Hi All, newbie here....Bob

Welcome from across the pond! So sorry to hear of the diagnosis as well as the fatigue. Yet, chin up, as it will get better. Lamentably, a certain degree of worse may arrive before the better. Nevertheless, better times are indeed coming. Avoiding the Adriamycin is a universal good thing. "Red devil" or "Red Bull" it is called stateside. Rather horrid stuff - as if any of it is truly good. However, the reason for the battle is good to bear in mind, as it is a war. And war is like two pugilists: even the victor is well and truly beaten.

Do let us know how you go.

Hi Bob Naehair and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

What of the 60 types and sub-types of Lymphoma do you gave?

For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

I lost 4.5 stone over my first few months…… I now have 3 sets of different sized trousers.

I am coming up to 9 years out from my last treatment Allo (donor) Stem Cell Transplants and I remain in remission to this day. I turn 69 in a few minutes and I continue to live as good a life as any other fit 69 year old.

Always around to chat.

Hi po18guy, thanks for the reply. Been an interesting few months so far, PMA is the thing keeping me sane at the moment, although I'm sure that will be tested in the months to come, keep fighting the fight brother... 

Morning Thehighlander, thanks for the reply.

I was diagnosed with Diffuse large B-cell high grade stage 3 NHL, the specific issue I had was a mass of 12.5cm which was abutting onto my bowel (probably causing pessure on nerves) which was what was giving me the excruciating pain for 4 weeks. Oramorph and Zomorph weren't touching the pain to the extent that at one real low point i would happily have done something really rash.

However, the initial dose of steroids helped to shrink the mass, relieving the pressure and pain, first cycle of R-CEOP done, back in tomorrow to start second cycle.

Like everyone one else going thru anything similar just trying to keep a PMA, early doors I know, but chin up and all that jazz, oh, and my hair is starting  to fall out, which to be honest I'm finding quite amusing for some reason, I always liked lollipops (Kojac reference for all who can remember ) Stay safe, and keep it real. 

That truly is a horror story until the steroids took effect. I have found it helpful to get outside of myself as much as possible. Although family, friends and workmates may be almost speechless, they can be of great comfort, simply to know that they are there and they care about you. I am fairly certain that this may put your pre-diagnosis talk of dropping a stone or two to rest! Think ahead, I say. Not long and you will be able to eat your way back into those floppy clothes.

Hi again Naehair so as you may well know your DLBCL is one of the most common types of fast growing High-grade non-Hodgkin lymphoma...... the good thing is it tends to react well to treatments.

I won't fill up your post with my full story....... but it's amazing how quick treatment works.......... but if you make a cup of strong coffee you can see my story through this link > See my story

I did actually get given a box of lollipops by my granddaughters (prompted by my wife)...... saved a fortune in hair cuts to the post my wife now does my hair due to me losing my hair a few times over my main treatments and it not growing back as thick as it used to be.

The lollipops were actually good at helping overcome some of the metallic tastes during treatment - who loves you baby 

We do have a specific group for Diffuse large B-cell lymphoma so do have a look through the discussion threads.

Thanks Mike, appreciated, will pop onto the DLBCL group, thanks for pointing it out, take it easy fella,  

Hi.  My son was diagnosed with stage 4 Burkitt Lymphoma in April in his blood and bone marrow.  His just finished 4 cycles of treatment.  We found out 2 days ago following his pet scan that the cancer is still present in his bone marrow.  His had another biopsy, and we are now waiting results.  His only 22. We are all so frightened.  

Hi again MyBoyL and just following up on your post in the New To Community.

I do see that you put up a reply to another older post specifically about Burkitt lymphoma so let’s see if the members are still using the site.

As I said in your first post it’s not that unusual for first line treatment not to do the job (I was the same)….. so at this point his team will review where things are at….. the biopsy is part of this just to make sure that things have not changed then his team will look at the various second line treatments that are available.

It is a stressful time….. talking can help so do consider calling the Lymohoma Action helpline that us open every week day from 10 till 3 on 0808 808 5555 as this is a safe place to talk things through and get support.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment….. and various Support Platforms for patients, caregivers, family and friends.

Always around to chat ((hugs))

Thank you Mike.  It’s so nice to have someone to talk to and you and others have left me feeling more hopeful.  Thank you!