Lymphoplasmacytic Lymphoma

Hi again Rosie OL and well done navigating across to this corner of the Community.

As I said in my reply to you in your New to Community post I am Mike and help out around our Lymphoma groups. I don’t have Lymphoplasmacytic Lymphoma (LPL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable 'other' type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

I was basically on Active Monitoring for about 14 years before I needed full on treatments. A lot of people are told they are on Watch and Wait but i just don't like this term as it suggests that life should be put on hold until something happens........ it's important to get on with life, I worked in a very demanding teaching job for the first 12 years of my diagnosis.... my rare NHL is a skin type so I was having skin treatments as if I had bad Psoriasis....... My story is rather complicated (See my story) as I had to go onto many treatments but I am coming up to 8 years out from my last treatment and turned 67 last Nov and doing great.

There are few members with the same type so let's look for some of the group members to pick up on your post.

You can also look through the various posts by using the search tool  near the top.

I am glad that you have found the Lymphoma Action website helpful. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

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

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Always around to help more or just to chat.

Hi. I too have the same type cancer eventually diagnosed in March after an open biopsy on my neck. Started DRC treatment in June but I’m afraid I had bad reactions it. I only managed one full treatment and it took hours to administer as kept having reactions. After midway scan consultant and team had meeting and decided to change treatment to immune therapy with new drug called zanubrutinib and into my second cycle now. This drug is long term and only given to those where DRC treatment didn’t help as well as hoped. So far I have been fine on it.

 I’m new to this group and this is my first post. Hope it helps

Hi Mistisla and welcome to the group (I notice that you have not actually joined the group - joining the group means that you get automatic email reply’s when anything is posted on the group or this thread)

Do check out the links I gave Rosie OL as there are some good information and support platforms through Lymphoma Action.

Oh thought I had joined as just received email about you replying. Will check. Will check out those links. Thank you

Actually yes, you would have received an email for this specific thread but not for the rest of the group activity 

Edit - you have joined now

Have joined non Hodgkin lymphoma group now. Thanks for telling me. As I mentioned I am new and just finding my feet

Always around to chat and help out.

Hi Mistisla

Welcome to this group though obviously I’m sorry you are here. I’m also on xanubrutinib.Ive not come across anybody else who is taking this drug. I’ve only been on it since July but so far it’s working and my bloods are normal. Fingers x, touchwood etc that it stays that way for both of us.

Regards

Cathy 

Hi Cathy. Yes fingers crossed for us both. I’m into my second week of second cycle. I hope to see some improvement when see consultant in November. Apparently it is fairly new drug. My hospital only been prescribing it a couple of months. It is an expensive drug apparently.

Regards

Carol

Hi Carol

Sorry I got your name wrong. Yes I’ve been told it is an expensive drug. We’re worth it ️

let me know how you get on in November. I’m sure it will be positive.

regards