Here I go....

Hi seasidepeter welcome.

Although I had a different type of NHL your journey so far sounds familiar apart from it taking 14 years before I needed full on treatment

Diagnosed with Cutaneous T-Cell Lymphoma back in 1999 and told Incurable but treatable but would never see any remission.

So 14 years of skin treatments then my condition became aggressive so in late 2013 I had 6 cycles of R-EPOCH (750hrs), 45 radiotherapy zaps and two Allogenic Stem Cell Transplants and was told in Sep 2016 I was in remission for the first time in over 17 years and doing great - there is always hope (hit my name for the War and Peace version)

So take each day as it comes and let’s see how you get on with your treatment - what is the name of your treatment?

Your family most likely don’t know what to say so being nice is a good default for them.
Always around to chat.

Hi Peter,

I too have MCL and am on 'watch and wait '. When my treatment starts it'll be Nordic protocol followed by a stem cell transplant. All these terms probably mean nothing to you just now but you'll become more aware of what's relevant to you.

The thought of treatment before it starts is very frightening as I think most of us picture the worst, myself included. 

I have been looking up Simon Rule on the internet. He is top dog in MCL. I have found his work and  what he has to say very encouraging. I think I might start stalking him soon. 

All the best for next week and ramble all you want...

Dear seasidepeter,

Nice to meet you, although wish it was under different circumstances. I too have Mantle Cell Lymphoma, had high lymphocyte count in 2014, was diagnosed 2015 went on watch and wait for several years, then in 2018 had large lymph nodes appear, tried BR (bendamustine + Rituxan) but dose at the time was too much for me and insisted on immunotherapy. I was on BTKi and Rituxan for 2 years and just recently became resistant.

BR is one of the 'nicer Chemo treatments' and can last up to 7 years, whereas some others like RCHOP are harsher and not superior.

What options has your consultant offered? I know that Dr Simon Rule in the UK has a BTK+R trial that is doing very well with no big side effects has your consultant offered a clinical trial like that?  Also are you getting your advice from a local physician or are you going to a major medical Centre in the UK? The clinical trials may be opening up now so If I were in your position I might ask for a second opinion.  There are so many different treatment available today with fewer side effects that do not necessarily go to SCT. 

Talk to your consultant. You are at the beginning of your disease in a new treatment era, look at all your options before going down the rabbit hole. A second opinion at a major Health Centre would be a very smart option.

Warm Regards,

Millie

Dear Anniemcn,

 Hello, nice to meet you, although wish it was for a different reasons.

May I encourage to to indeed stalk Dr. Simon Rule he is one of the top 5 MCL specialists globally. Very nice personality and Very Very Smart.  He has the Ibrutinib + Rituxan trial that I know of and may have many more.  The top people in the field so no necessarily recommend the Nortic protocol followed by SCT,  that is pretty much a 12 year old approach.

Since that time there are multiple new immunotherapies out there and others on the horizon that might bring a cure within the next years.

So I do highly recommend Dr Simon Rule as a second opinion, you may be very happy that you did.

Warmest Regards,

Millie