Marginal zone none Hodgkin's lymphoma of salivary gland.

Hi MandG and a warm welcome to this corner of the Community although good to hear that you have been finding the group helpful.

As you may know, I am Mike and I help out around our various Lymphoma groups. I don’t have Nodal marginal zone lymphoma but was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Any cancer diagnosis can be bewildering..... but more so when it comes to Lymphoma. Lymphoma is a very complicated type of cancer and this is further highlighted by the fact that there are over 60 types and sub-types of Lymphoma and with this comes many many different treatments available to be used.

Let's look for your PET scan to confirm that all is ok and you can settle into post treatment life. My journey required rather a lot of treatment (See my story) but I am into my 6th year in long-term Remission and living the dream.

Always around to chat ((hugs))

Thank you for your kind welcome. You truly are an inspiration.  Hopefully my PET scan will show a good response to the radiotherapy. I was having itching arms and legs but that has improved greatly over the past 3 to 4 weeks. Feeling optimistic for the short term but of course anything further is very uncertain.

My annual holiday insurance is now invalid. They won't cover me for 5 tears post diagnosis. Holidays in the UK for a while I think.

Good morning MandG the future is always uncertain but from my years of living with one of the very rare types of incurable NHLs progress is being made with regards treatments all the time.

Back in Sep 2016 the thought of me ever seeing remission lasting longer than 9 months would have been a dream but here I am 6 years in.

Up until Sep 2016 I was only ever in remission for about 9 months at the longest before going back on treatment so in my book there is always hope and it’s that mind set I live with. Live in the moment and tomorrow will take care of itself.

Yes holiday insurance can be a challenge but after two year in ‘remission’ look again as that is when I got full European cover and that was after my second Stem Cell Transplant and still seen as incurable.

To widen your ability to connect with others you may want to check out the Lymphoma Action. Lymphoma Action is the only UK Lymphoma Specific Charity who run regular Lymphoma Online Support Groups...... I highly recommend these groups as there is nothing better than ‘talking’ with other who have walked the journey.

Always around to chat ((hugs))

Hi MandG

I feel I’m in a similar situation as you. Aged 60, otherwise fit and healthy, diagnosed with extra nodal MZL a few months ago. Started with lump in throat and discovered one in lung after scan. I’m on a second round of Rituximab treatment. I still can’t get my head around having cancer either and am just being carried along with whatever the experts say at the moment. The worst part is wondering how to cope without ever being able to plan for the future.

Hi Rosyboat,  I think that is a good plan to follow advice of experts for the medical treatment, they will have come up with the best evidence based practice for you. Planning for the future now comes with a caveat of ....if I am well enough...if I am around? I feel It helps me to think that no one knows what the future holds, so best not to think too deeply about this and enjoy the moment, the day. It has taken me a number of months to feel this way though.

I hope you are coping well with your treatment? My post treatment PET scan has shown a full metabolic response, so formally in remission, hopefully for a long time. Feeling physically very well. Lymphoma can be very responsive to treatment.

Hi MandG, good to hear that your PET scan was good news and yes you are in remission……. Look forward, enjoy life, park the ‘journey’ on a high shelf so you are not continually looking at it……. believe me, based on my 23 years journey there is life to be lived and enjoyed.

You may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones that need to be navigated.

Hi Rosyboat, we are all passengers during treatment so you just have to trust the drivers (your clinical team)….. although I am a back seat driver lol.

I was diagnosed when I was 43 with my very rare incurable type of NHL I have had 17 years of treatments but have now been in remission for over 6 years…… the longest remission I have ever had as until Sep 2016 the longest remission was 9 months..,,,, !!!!

The future is still there for you….. but at the moment the main thing is to get this event in your life’s journey done, then you can move on.

I have a few note books that go back through my 23+ years journey with all the questions I have asked, my treatments, my feelings, the funny things that happened and of course the challenges……. but the back few pages were used by my wife and I to keep a running list of our hope and dreams.

I am pleased to say that many of these have been achieved and our list has still got a lot in it that we are actively planned to do over the next few years.

At the moment you are having to work through the hard times….. but it’s important to keep your eyes firmly fixed on the greater good in all this.

I am turning 67 in a few weeks and I am living as good a life that any 67 year old can be living……. and so you you in the future ((hugs))

That is An amazing read. So intuitive and comforting , I can certainly start to identify with all that Dr Harvey discusses. Thank you for sending the link.

It is a great tool. We use it a lot in the general Life after cancer group n the Community.

I found the paper a great tool to help get life back on a plan to look forward and achieve all our hopes and dreams.

I always suggest folks get a note book or some sheets of paper and put pen to paper then have a page per subject heading.

Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards. 

When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

The headings would be:

What steps am I taking to regain trusts in my body?

What steps am I taking to regain trust in myself?

What steps am I taking to overcome living with uncertainty?

What steps am I taking to deal with the world?

What steps am I taking to regain mastery and control of my life?

Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash ((hugs))

Hi Rosyboat. 

I am in the exact same situation as you have described. I went for a routine removal of a mucous cyst 6 weeks ago, which was then sent for tests as a precaution. I have no symptoms and there was no indication anything was wrong. Fast forward to last week and I'm getting a phone call to tell me that it is MALT Lymphoma of the salivary gland. I have a CT scan next Friday to confirm the staging.

I am 40 years old and in good physical health so it's been difficult to get my head around. I'm hoping that comes in time. I can't bring myself to tell my family as they live away and will worry. 

I did have one question if you wouldn't mind me asking? I was told that I would be on 'watch and wait' straight away and that this wouldn't change even if my CT scan showed that it had spread to other sites. You seem to have been put on Rituximab straight away. Did they give you a reason for starting so soon or did you have to push for it?

Either way, it sounds like you are doing well in the fight against it. I wish you the best of luck moving forward!