I am meeting my consultant this Friday. I have been in remission for about eighteen months but about two years since I was first diagnosed with MCL.
I now have, what to me feels like, a table tennis ball growing under my right ear. I had an ultrasound last week and they were able to tell me that I also have other swollen glands there: “a cluster”. I don’t have the same symptoms as two years ago. My spleen is not swollen so I can’t still eat; nothing wrong with my appetite and my weight is stable. I didn’t lose any weight last time until after the first lot of chemo.
The main issue I have is I am tired all the time. If I do anything approaching strenuous I have to go lie down after.
As I have MCL I knew it was going to relapse some time. I didn’t get offered the transplant probably as I was too old just lots of chemo that I was warned could have killed me but I came through relatively unscathed except for numb toes.
The next phase as I understand it is to be put on some medication which I am guessing is going to be Ibrutinib. I am wondering if the side-affects affect everyone or are they are as bad as some say?
Will update you after Friday.
PhilipM
Hi PhilipM sorry to hear about the possibilities of a relapse…… as you say, with MCL at some point this may Relapse.
I know this feeling very well as I have relapsed multiply times over my 24+ years….. but I will say that until a relapse is confirmed you have not relapsed…… I say this as I have had more false alarms as I have had positive relapses…… and that was with the same-ish symptoms.
As my CTCL and PTCL are rather different so I don’t know the exact path you would follow if it’s required…… but I do know about Stem Cell Transplants (SCT) as this was the only thing that would turn the table for me…… but this is often see as a third or even forth line treatment.
I had 2 Allo (donor) SCTs (June 2013 and Oct 2015)…. As for your age and the risks…… they n my SCT unit there were folks in their mid to late 70s where we’re going through their Allo SCTs….. and they had significant ‘other’ health conditions…… but you just have to deal with the now and not go far ahead until something is confirmed.
My first type of Cutaneous T-Cell NHL is an incurable Low-Grade NHL that was first diagnosed back in 1999 and is the one that repeatedly relapsed…… the longest remission over my first 14 -15 years was about 9 months.
When my High-Grade NHL - Peripheral T-Cell -NOS (Not Otherwise Specified) NHL came along in late 2013 taking me to stage 4…… all hell brook lose….. but 2 years of intensive treatment between late 2013 to late 2015 resulted in a win….
They say my High-Grade is technically gone (they won’t use the word cured) and my Low-Grade is fast asleep so as long as I don’t go around kissing princesses I might be able to this out the fest of my life.
I am 9.5 years out from my last treatment, I do have some post treatment left over issues but I turn 70 at the end of this year and I am living a great life.
So let’s look for this not to be a relapse…. but if it is, a plan can be put together.
You see this group is rather quiet….. so as long as you are in the UK and to widen your search for support you may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
I also volunteer for Lymphoma Action and I regularly see folks with MZL interacting in the various groups.
They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
Ta 
