Hi

Hi Octobersun  and a warm welcome to this corner of the Community although I am sorry to hear about your daughter. 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 non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your daughters I do appreciate the challenges of this journey rather well.

The Lymphoma journey tends to follow a path that takes us through being diagnosed, getting progressively poorly be it due to the symptoms or as a result of treatment…… but the positive with Lymphoms is that it’s very treatable with great results and once you get out the other end of treatment life gets back on track.

Could you tells a little more about your daughter.’l

How old is your daughter?

What of the 60 types and sub-types of Lymphoma does she have?

Is she on Active Monitoring (Watch and Wait) or is in treatment or had treatment?

What treatment is she having or had?

This information can help us support you and indeed your daughter better.

Hello, well she was diagnosed in October,  she's in her early 50s, she has B cell stage 4, a very large swelling in her neck and a couple of smaller ones in other places. She's had 2 rounds of chemo so far, plus biopsies and scans.  

Hi again, sorry for not getting back to you sooner but I was on a Lymphoma Action Buddy Call.

From how things have progressed it sounds like she has a type of High-grade non-Hodgkin lymphoma…… having lived with and been treated for my rare type of NHL (7 in a million) I always look for the positives in the journey. 

If it is a High Grade then it will grow quickly so this is most likely why she moved to treatment quickly but it’s important to understand that the initial goal is to treat to cure…… this is completely different from my low grade as treatments are only used to control the condition as it’s incurable.

Is she having R-CHOP?….. this chemo regime is often the first line treatment used for many high grade NHLs

Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

How is she getting on with her treatment?……. Is she suffering any side effects?

I understand the challenges you are dealing with….. I will always say…… and my long suffering wife Fiona agreed - that the journey can be just as hard for the person looking on than it is for the person in the bed.

I mentioned Lymphoma Action. 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 but also for family..... 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 (patients or family) can be linked up with someone who has walked the same 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 chat and answer any questions as best as I can ((hugs))

Thank you for the info, very helpful and I appreciate your time. There's a lot to take in for sure. 

Do come back with any questions you have…… the more you talk this through the more the light at the end of the tunnel gets brighter ((hugs))