Hello to the end of the beginning

Lymphoma association booklet - High-grade non-Hodgkin lymphomaThe last time I wrote something on here, I mentioned that I’d had a diagnosis of lymphoma. Since then, I’ve had a more specific diagnosis given to me and a course of treatment outlined. The hospital wants to run a few more tests this week before I start out on treatment in earnest, but all being well, sometime towards the end of this month it really will be the end of the beginning.

For anyone that hasn’t thought too much about lymphoma, (and I was certainly in that category until a few weeks ago), it’s probably worthwhile me summarising what I’ve been told.

 

Lymphomas are cancers that attack the lymphatic system – the network of vessels and nodes that the body uses to clear away waste and infections from the body’s tissues. They’re categorised into two main types – Hodgkin and non-Hodgkin lymphomas, which seems about as sensible as dividing up the animal kingdom into elephants and non-elephants. Mine is a non-Hodgkin lymphoma (nHL).

Within the nHL category, there are low-grade and high-grade lymphomas. Low-grade variants develop slowly, whereas high-grade variants develop rapidly – you often hear the term aggressive used – but interestingly enough these tend to be easier to treat than the low-grade varieties. Lymphomas can also develop in either B cells or T cells – B cells are in the bone marrow, T cells are in the thymus.

The specific type of nHL I’ve been diagnosed with is mantle cell lymphoma (MCL). It’s relatively rare (it accounts for around 5% of all nHLs) and usually occurs in people 15-20 years older than I am. It affects the B cells and is (according to my consultant) ‘on the boundary’ between low and high-grade lymphomas, although the Lymphoma Association classify it as high-grade in their booklet.

This is where it all gets a little scary. The first thing it says about the treatment for MCL is:

 

MCL is difficult to treat successfully. It is not considered curable.

 

… which came as quite a shock, to say the least.

However, the treatment regime I’ve been given – the “Nordic Protocol” – appears to have excellent results, as long-term remission is definitely possible and apparently probable. The research I’ve read so far suggests that something like a 97% response rate to treatment is achieved, with mean survival times being boosted from the 3-5 years that used to be associated with this condition a decade or so ago to something like 7-10 years – and counting. So although it isn’t curable in the strictest sense of the word, I’m very hopeful that something else will get me in 20 to 30 years time, long before MCL manages to!

I never thought I’d become a health blogger. However, I’ve decided that to keep myself sane (or as sane as I ever was), it will be therapeutic (and who knows, maybe of use to others) to document my progress here. As I said to my University of Leicester blog readers, this is not goodbye.

So, hello.

 

8 comments

  • Catherine Verney

    HI Tim, all the best with your treatment. You are in my thoughts and prayers.

  • sharmistha

    Hi Tim,
    you are one of the most positive person I have ever known. I am highly inspired by your ability to share your thoughts and experiences about your hugely life changing event. I wish you all the best and a speedy recovery, and watch out this space for updates!

    warm regards, sharmistha.

  • Sonja

    Hi Tim. I hope everything will turn out OK for you. This all sounds quite scary. Fingers crossed and hope to hear from you again.

    • tim

      Hi Sonja,

      Thanks – and you’ll definitely be hearing from me (probably rather too much) over the next few months as I beat this thing off!

      Tim

  • Dawn

    Hi Tim. Just got back from holiday and read your blog. It must have been quite a shock to have been diagnosed with such a rare form of NHL. I don’t know much about lymphoma so thanks for sharing your thoughts and for allowing me to learn about this form of cancer through your eyes. The Nordic Protocol sounds very positive and as always I wish you the very best. I wish Indi the very best too.

  • Indi Huws

    I have just been diagnosed with Stage 2 Invasive Ductal Carcinoma…as in Breast Cancer. I have other conditions (heart and lung problems) which are making the Anaesthetist very worried as I am extremely high risk (9 out of 10 chance of dying on the table) BUT, instead of living with what is basically a ticking bomb in my chest I have opted for a double mastectomy! So my journey has just begun too. And as you say…this is NOT goodbye!!! It helped me to read your blog, thank you! Operation is now booked for the 7th October as long as there is an ITU bed available at the same time! Consent form signed…just waiting for D Day now!

    • tim

      Hi Indi,

      Glad my post helped – and all the best for your operation. Do stop by again and let me know how it went – I shall be willing you every success!

      Tim.

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