Marginal Zone - looks like the end to watch and wait

Hi Namod

I have marginal zone lymphoma, originally diagnosed as splenic marginal lymphoma in my bone marrow. To be honest they are still not really sure which one it is as they are so similar. Mine was stage 4 as well. I was on watch and wait for a while after my spleen was removed but unfortunately it spread to my lungs so had to have chemo. Now on rituximab injections every two months for two years as "belt and braces" in my Consultant's words. From wot I understand rituximab is more of a preventative treatment. I have no side effects from it at all. I know it's not the same as tablet form but guessing it's very similar. We are all different but I tend to take the advice of my Consultant. Dont think they recommend treatment unless they think it's necessary. Agree about bone marrow biopsy. Horrible things they are but a necessary evil. The scans will probably reveal more. Good luck. Don't hesitate to ask me any questions at all. Happy to help 

Hi cattiewhitty

Thanks for the reply.

It's the chemo they are saying will be in tablet form. I have looked it up and it seems to be milder than intravenous with less side effects, hope so, but can't see if it's been used in that form for Lymphoma.

How long have you been on Rituximab? Encouraging to hear you have had no side effects.

Do you get to see the same consultant?

Every time I go it's someone different, not always a bad thing as you get slightly different opinions but sometimes it would be nice to feel they remembered you!

Hi 

I was diagnosed with Marginal Zone Stage 4 in 2011 (loads of lymph nodes, spleen and spine, but didn't have my spleen removed)..

I was told it was splenic yhan told it was nodal. I changed consultant ant and she is sure it is nodal. I had an oral chemo tablet - Chlorambucil with Rituximab and had no real side effects.

I had Bendamustine (intravenous) last year, together with Rituximab again and am now on 2 terms of Ritux maintenance therapy ( I have to have that intravenously over 15 hours as I'm very allergic to it). I'I've been very tired this time round, but I'm 73 so it amy be down to that. This last treatment is getting rid of most of the cancer cells, however, so well worth it.

Hi there

I think it's a difficult one to diagnose. I was told it's quite rare and, as I said, they are still not really sure which one I have

Great to hear you are doing well now 

Hi artygran

Thanks for the reply.

Pleased to hear from someone who has had oral chemo, not pleased that you had to have it of course.

I am assuming that the combination with Rituximab put you into remission for a few years at least?

I was wondering about being allergic to Rituximab as I am what they call atopic, allergies in the family genes and have eczema but I guess it doesn't follow that I would be allergic to Rituximab 

You must have to stay in overnight. Glad it's zapping those nasties. All the best.

Sorry didn't read it properly. I had chemo intravenously so not sure about the tablets. From wot I have read it is a milder chemo. Had 6 Rcvp I think it was. Didn't lose my hair although it went very thin. I was dreading the chemo but I can honestly say it wasn't as bad as I thort. Maybe I was lucky but I had very little sickness. Just make sure you take everything they recommend and drink lots of water to flush it thru your system. My only side effect was sheer exhaustion and I still have that now but Consultant seems to think that's the lymphoma not the chemo. The rituximab is maintenance chemo (although my nurses say it isn't actually chemo) just to stop it spreading again from what I can gather. Finished chemo Feb last year, started rituximab in May. 

Only time I had side effects was when I forgot to take the piriton they gave me.

Yes I see the same Consultant every time thankfully. Must be difficult for you when it's a different one each time. Can you ask to see the same one? Continuity is important in these situations in my opinion. 

Hope that helps. Anything else just ask 

Hi, 

My husband has marginal zone b cell Lymphoma  of the skin.  Fortunately it has stayed in  The skin with maybe just one lymph node? When he was first dxg he had pet scans CT scans bone marrow biopsy,  camera down to the stomach etc. All neg.  Just skin biopsies all shwing lymphoma . He had Radiotherapy first, then four sessions Rituximab intravenously.  That put him in remission for just over a year. It came back, but slowly so watch and wait till Jan this year and he has had another 4 sessions of Rituximab.  Again looking like remission again. We were told they can't get rid of it altogether, so it will come back, but can be treated again as before. Plus they have plenty of other stuff they can give chemo wise.  Graham had a fairly bad reaction to the first dose of Rituximab each time . The three other doses were fine. But given slowly and we'll monitored. They gave steroids antihistamines and slowed it right down . So it is possible to have to stay very late or overnight.   It is a common side effect. We have heard it was developed in mouse genes and that's why it can cause the allergy. Don't think they can tell if you will react or not before hand.  He goes now to Jimmys in Leeds. They have an excellent Lymphoma department. Our consultant had a good chat with us about marginal zone Lymphomas and how he treats them. Finding what works for a particular patient, then going forward with that plan. It's all very clever stuff and Rituximab is a brilliant drug, with few side effects. Graham has had some fatigue which build as treatment continues. But then improves again.. Also a bit of brain fog. He is 55 and found work too much since dxg. He did very physical night work. He worked till April last year, but it all got too much. Good luck with your treatment .x

Thanks for the advise cattiewhitty 

I think it's the exhaustion I'm going to find hardest to deal with, but we shall see.

Have just looked up the Chlorambucil that artygran had it seems a lot of these drugs cause what your trying to stop, very confusing.

Hoping that the consultant I saw this time will be there for my next appointment, she was very thorough and she talked to me. It's a big clinic, there are usually about six consultants working plus a couple of registrars.

Will ask to see her if she's there. All the best to you.

Thanks for your informative reply isgray, very interesting.

Don't mice have allergies then, I guess not!

It sounds as if your husband has a very good consultant and is in good hands.

Just waiting for all tests now and the outcome.

All the best to you both.

The exhaustion is very debilitating. Like Graham I gave up work as it was a physical job and I just cudnt cope. It cud be an age thing though as I'm a similar age to Graham