Mantle cell lymphoma

Hi Trixie51  and a warm welcome to this little corner of the Community and sorry to hear that you find yourself on the Lymphoma rollercoaster.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Mantle cell lymphoma but for some context I have been on my Lymphoma journey for over 25 years first diagnosed way back in May 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Cutaneous T-Cell Non Hodgkin’s Lymphoma (CTCL).

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive Peripheral T-Cell Non Hodgkin’s Lymphoma (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

So where are you with regards to a plan for going forward….   are you going straight to treatment or have you been put on Active Monitoring (Watch and Wait) ? 

Hi 

I've been for a pet scan awaiting the results.

Also waiting for a biopsy appointment. I dont think I have processed all of this yet.

So I don't know if I'm a watch and wait or at a stage. 

The appointment with my consultant is in March.

I hate the waiting. 

Waiting and Lymphoma unfortunately go hand in hand…… Lymphoma is a complicated type of cancer……

Is this a second biopsy?…… as I assume that as you say you have Mantle Cell NHL you have had one before as this is the main way to identity what of the 60 types and sub-types of Lymphoma you have.

It’s important to get that when it comes to Lymphoma it is very treatable……. 

I was diagnosed through blood tests that went off to a specialist. So I'm waiting for my first biopsy to see if its in my bone marrow.

But thank you so much for the info it nice to have somebody to chat to.  

It just shows how different lymphomas can be…….. in all my 25+ years I have never had a blood tests (I have had a lot of blood tests) that indicated my 2 types of rare T-Cell NHLs.

It took 14 years before my regular BMBs (Bone Marrow Biopsies) showed anything in my Bone Marrow…… this was due to my second T-Cell appearing and this is when I was classed as stage 4a.

Your PET will help stage you…… again it’s important to understand that Staging in Lymphoma is very different from solid tumour 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. 

Thank you again Mike for all the information. I've been so overwhelmed. Not sleeping with worry that I just feel exhausted. 

I think you hear the word cancer and just assume the worst.

You have made me feel slightly better by being able to chat. Thanks again. 

I will definitely be back when I know more.

Thanks again

Yes the C word is not great to hear….. but with Lymphoma it does take on different dimension.

Getting clear, safe and accurate information in the early days is very important.

Google and such like can take you down some unhelpful rabbit holes……

I suggest that you stick to the Lymphoma Action website. 

The Lymphoma Action website has lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

As you prepare for appointments you may find these 2 links very helpful…… especially the Questions Link.

Getting clear information helps turn the noise between the ears down,

Top tips for getting the best from your appointments

Questions to ask your medical team about lymphoma

Always around to help out.