Primary Pancreatic NHL

Hi Thirlin and welcome to this corner of the Community although I am always sorry to see folks finding us. I am Mike and I help out around our various Lymphoma groups.

I have been helping out on the community for over 5 years now and I cant remember anyone who has had this presentation, but NHL can indeed turn up just about anywhere in and on the body - my skin was 70% covered in tumours at one point as I have a rare incurable skin NHL diagnosed in 1999 that eventually was classed as stage 4a in mid 2013.... but i am still around doing very well.

This is a hard time for you all especially with all the uncertainty but lets look for a clear plan to be put together to get hm on a successful treatment path.

Can I highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information and and support routes. They run regular Regional Lymphoma Online Support Groups so you may well find the Carers Group very helpful.

They also have a Lymphoma Buddy Service where people can be linked up with someone who has walked a similar treatment journey. 

You may also find their helpline on 0808 808 5555 helpful as you can ask them if they have any information on their database about this condition - open every week day from 10 til 3.

Lets look for any group member who has any experience like this to pick up on your post

Always around to help more or just to chat

Thank you so much Mike. I shall check out those sites. I was told it’s very rare. 
many thanks. 

On the whole most types of NHL including the rare types can be treated in some way. I do hope you get some clarity as soon as possible.

Hi Thirlin and sorry to see you posting, on another site I have known a couple who had disease involving the pancreas but it was not necessarily the primary site. The biopsy will give them information that will allow them to sub type the lymphoma and that will then inform the treatment. The likelihood is it will be a B cell type and there are a number of well used protocols to treat these sub types.

Unfortunately these initial days can be challenging as information can be spars whilst they do what they need to to get the answers to inform the plan. 

If you do wish to look for information do stick to legitimate sites, however its better to wait if you can until you have all the facts as you can cause yourself unnecessary worry and the wrong sites are scary and giving incorrect information.

do ask any questions and someone will always be around to try to help.

john

I just noticed that someone on one of the Lymphoma Action Support Platforms posted about their 18 year old son just starting treatment for Pancreatic NHL that is Primary Mediastinal Large B Cell NHL ((hugs))

Thank you, will take a look tomorrow. I’m having a meltdown tonight as he’s been transferred to the cardiac ward as blood pressure has gone up to 220 ov r something.  Trying so hard to stay strong but it’s hard. 
this is a fit, healthy 57 year old man who has lost 10lb and gone yellow over a couple of weeks and now

It’s a bumpy ride and it’s often harder for those looking on. I ended up in ICU with heart issues a few times but have no real memories of this but my wife remembers everything ((hugs))