Diagnosed with Marginal Zone Lymphoma - reassurance needed!

Hi again MorningLightMountain and good that you have now get a clear diagnosis.

There are three main types of Marginal Zone

MALT lymphoma (gastric and non-gastric)

Splenic marginal zone lymphoma

Nodal marginal zone lymphoma

Do you know the exact one you have?

As you see Marginal Zone NHLs represent a good portion of the main NHL types - this is good news as the research and treatments are well tested.

The Symptoms you are experiencing can be rather normal, although some people like myself never had any 'B' symptoms........ so i was Stage 4a. Your body's chemical balance will be all over the place at the moment so weird things like drug intolerance and going off alcohol again is normal. So I am not surprised that your Consultant was not that concerned about the symptoms. 

As for the time to treatment - it is unfortunate that at times we have to wait for treatment to start, I was the same and I was in a very bad way (it my Community name for my story) but the system is very stretched but I have to say that the wait made no difference to my final outcomes and once started worked very quickly.

R-CVP is a very effective treatment, it's the little brother to my R-EPOCH........you will see from my profile that my treatment lasted over 120hrs 24/7 for 5 nights/6 days for each of my 6 cycles. I did ok and actually did not experience any of the problematic side effects you will read about in the information sheets you will get.

Have a look at this link Top Tips for the day of your Chemotherapy as it will help you get ready for your treatment.

There are a few members with MZL so let's see if they are still looking in.

I always highlight the Lymphoma Action website. The Bold link above are taken for the site.

Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Always around to chat and answer questions as best as I can.

Hello again, Mike!

Thank you for your detailed reply as well as all the information within it. 

Unfortunately, they did not actually tell me which kind of MZL I have, but I will ask again when I go in next week. They basically just said it was MZL and the B-cell type (which fortunately does have a better prognosis than T-cell)

I want to thank you for putting my mind at ease and explaining that everything I am feeling and suffering from right now is normal for this kind of cancer and that it can still be treated! I just am quite a worrier and having suffered from anxiety and depression, I'm sure you can understand that my mind will be all over the place with worry. I greatly appreciate you taking the time to reply. 

I am feeling quite weak right now so don't really have the energy to write much more, but I am going to have a look at all the links you've provided - thank you for those, too!

Hi there

ive got splenic marginal zone lymphoma, have had since 2014. Sounds to me like that’s what yours is but, of course,I’m no doctor. I’m sure they’ll confirm it if you ask. I also had the stage 4b diagnosis and I’m still here so please don’t worry about the numbers. It does utterly wipe you out, there are no words to describe how tired you get from doing very little. Also I was told you have no appetite because of the lymphoma. I had my spleen removed and no chemo initially but have had since. I won’t tell you it’s pleasant because it isn’t but it wasn’t as bad as I feared and I was amazed at how quickly I felt so much better after it. As for alcohol I used to love my wine (probably too much) now I can’t stomach it and rarely drink. Most alcohol tastes of chemicals now. I didn’t have problems with my jaw or been light headed but have had other symptoms that you haven’t. I suppose it affects everybody differently. I’d say your Consultant is right, these are all perfectly normal symptoms of your condition.

I know it’s easy for me to say but try not too worry. you will get through this. Please do not hesitate to contact me if you need too.  It’s always good to talk to someone who has been through it and come out the other side. 

You sound like me in 2018 when my lymphoma took off in a big way. Loss of appetite and absolutely no energy hit me too. Things will get better so hang in there. Good luck for your treatment.

Mike aka The Highlander

I have only just joined the Community and come across your posts. I am a Glaswegian living in Cheshire and worked in the "Polis" with a very good friend and colleague who hailed from Inverness.  We both worked hard with our secondary roles as "missionaries spreading the culture" down here south of Hadrians Wall.

I have MZL, going for cycle 5 R-CHOP tomorrow. From the  info you have posted, I have sorted 5 questions which I will use in my interrogation of the nurse specialist or consultant  tomorrow.  I have most of the symptoms previously outlined and have learned to take each day as it comes.

The info you have provided is a "Godsend" and you are an inspiration Sir.  Compared to what you have gone through over the years, I have only "got the sniffles and a tad of being under the weather!"

I will take on board your slogan of  the "illness does not define you...our strength, courage and faith does" although I admit to the odd war cry, usually  about two in the morning while in pain of  ..

.........."Faddaidh an aillse mo asal a phogadh".

Hi hamish1 and good to hear from you.

Good to hear my posts have been some help…. each journey is full of twists and turns so peer support can help a lot…… we all need a war cry as it’s a good tool to help us push through especially during hard times.

Always around to chat although I am over on Skye at the moment fighting the midges

I’m really sorry to hear how unwell you are feeling. I too have just been diagnosed with extra nodal marginal cell lymphoma, starting treatment next week, also delayed by hospital errors.  Sounds as if you’re further down the road than me, but it is useful have an honest report from someone who is also going through it, so I know what’s ahead of me. I Just want to be able to plan, as everyone always says ‘ oh you ll be alright!’ , when they really don’t know!
Good luck with your treatment.

Hi Rosyboat

Many thanks for your kind wishes re my ongoing treatment. Happy to relate my  journey of 5 R-CHOP, cycles, though you will have, no doubt, been told and/or learned of all the concerns and side effects involved in treatment. Lots, but as advised, you may only get some of side effects and can affect patients differently.. ..

My side effects, in the main, have been  PAIN, NAUSEA, HAIR LOSS, FATIGUE and LACK of SLEEP.

Hair loss did not start until about 7 weeks in after cycle 1. Sensed it was the calm before the storm.Some family members regard it as a return to my Adonis looks...so modest!

Nausea comes and goes frequently. Just get lots of anti-sick tablets.

Fatigue.. I apply 5 levels...1  low  progressing  to 5 as high. Level 1 you can learn to "work through", being able to get . out of bed. Important to keep active when you can. Level 5 is not being able to lift the head of the pillow and staying  there until it improves. Level 5 has only occurred for three consecutive days after cycle 2 ie  noon, noon and 1.00pm  before I was able to get up   Lower differing levels have been frequent throughout.  I  have learned to cope with the fatigue as I am sure you will also.          Rest when you need to, move when you can.

Pain...I apply levels of 1 to 10 (highest). I originally saw my GP about 18 months ago over unexplained fatigue, level 2 pain in ankles and wrists and an irregular bowel habit. This led to my suspected cancer pathway. The pain rose frequently to level 7 from ankles through legs and wrists to arms and torso but never got a headache. Pain management was finally achieved by being prescribed morphine tablets and solution together with anti-constipation an anti-nausea tablets. The jury is still out over the cause of the pain.....the cancer, treatment or some other ailment as this was present  and ongoing since 18 months ago.  Pain in muscles and joints for 2/3 days after a cycle is known  side effect and usually a pain relief is provided {probably paracetomol  or rcocodamol}.

Lack of sleep...well I am just an insomniac. Less than 4 hours nightly is sleep deprivation. 7 hours to offset dementia?   I have no chance!

I am making an assumption you will be having similar treatment. Each cycle, I have learned, has had slight  side effect variations but not to any extreme. Treatment lasting no more then 5 hours in the haematology day ward with constant monitoring for any issues during and with a pre-treatment check up,,,bloods, weight etc.,  2 days prior to ensure "you are good to go" for the treatment. I am also able to drive there and return home. I have an acquaintance who is not able to do that after his similar treatment  and "is like a baby" without wishing to cause concern to you.

I found it useful to keep a daily diary of symptoms, feelings, mood etc and also included entering when the 21 day cycle started and and finished, lots of tablets to be taken for first 10 days and particularly on day 8, of the subsequent 6  doses  of self injected subcutaneous syringes of white blood cell enhancing solution. You will be taught how to do this.  In my case, pinch skin on the tum, apply needle almost horizontally to the pinched skin, and I assure you, you  wont feel a thing. Not even like the "slight scratch" of the blood test sample taking or cannula entry for the IV fluids.

The diary entries are useful to refer to any noted symptoms which can be compared to each day of the 21 day cycle and for preparation for any relevant questions to or from your nurse specialist or consultant.

I recommend checking out the Lymphoma Action website as highlighted by Mike The Highlander, (hope the midgies didnt get to him in Skye). Excellent information there and also the Untire App {Apple or Playstore) both of which I have only recently discovered.

Cancer used to  strike 1 in 4, I reckon it is verging on 1 in 2 now. Lost my  brother {69) 9 years ago to leukaemia,  my daughter contracted cancer in one eye 12 years ago, fortunately now in remission  and eye saved but continues with annual checks for research purpose as it is so rare, and finally my wife (65) 7 years ago to A.M.L. (Incidentlally treated in same hospital as I attend and a lot of the staff remember her strength and fortitude so I have a lot to live up to!)

On a final note, it is important to get, keep, and maintain a positive outlook. The highs and hopefully, not many lows will come. I hope you have similar access to mine, of support  from family, friends etc. although probably not the private nurse I have, with one of my daughters being  a nursing sister in the I.C.U of the hospital I attend just 7 miles away.

I wish you all the best with your treatment and I hope this tome has been of some help.

" You will be alright!"

“Thank you for your reply, it’s really helpful. I’m starting on Rituximab only. I’m going into it thinking I will be absolutely fine, but I do know I’m burying my head in the sand. I think I need to be optimistically realistic in my expectations.

Good luck