Hi, I have just finished 6 treatments of R-CVP, I was diagnosed with Nodal Marginal Zone B NH Lymphoma, again is usually a slow growing cancer. Unfortunately by the time I had all the tests, they found it was in my lungs, neck and under arms and down my stomach. The multi disciplinary team decide the best course of treatment when the time is right. I managed the treatment very well and I am now in remission. It is a bit daunting at the beginning to have all this put on you, but I would read as much as possible about it. The doctor gave me loads of information about Nmzl as it’s quite a rare one to have. Also it could change from a low grade to a high grade. I honestly would encourage him to have the treatment, it’s not too bad and the doctors wouldn’t put you through this if it’s not needed. Retuximab takes the longest to go in, then they put the other chemo drugs in after the retuximab. I’m was hoping I’d be getting a maintenance treatment of it but unfortunately they don’t do it for my type of lymphoma. So I will probably be on watch and wait for quite a few years in case it comes back. I wish you and your husband well on this journey.

Hi Scones

Thank you for the reply. He is adamant he will not have chemo as has seen what it has doen to his friends. We have researched a lot into this specific condition and trails although not many of them all state that Rituximab alone is the best first line defence. 

We were hoping to find other people that have had rituximab alone in the uk as it is surely better to have what the patient wants rather than the imposition of something he does not want.

Anyone out there that has had Rituximab as a stand alone treatment we would love to hear from you.

I am really happy that the treatment you are having has worked well for you and wish you good luck and future health.

Hi Hollee

Yes, I had Rituximab alone to treat my SMZL. It was diagnosed by bone marrow biopsy in November 2015 and I had six Rituximab infusions from February to June 2016. This was in the UK. However, at the time of diagnosis, my spleen length was 17cms so not as large as your partner’s. It shrank down to normal size very quickly after the Rituximab.

My biggest problem has been disabling fatigue, which started around 18 months before diagnosis. My energy levels improved dramatically following the Rituximab but unfortunately the fatigue has now returned. It is unlikely that I will get more Rituximab anytime soon as the lymphoma is currently at a very low level and my immunoglobulin levels are low. I am stuck in a terrible limbo land, struggling to get through every day. I am starting acupuncture to see if that helps.

Good luck to you and your partner. I hope this is helpful.

Elsie

Hi Hollee,  Just a bit of info that may help. I was diagnosed with SMZL 15/10/2018 and a week later was stated on a 4 week treatment of rituximab (1 dose by  IV each week) I have just had a second Bone marrow on 7/01/2019 to see how it went. sorry no results till 16/1/2019 . The Drs where going to watch and wait but because of multiple other issues they thought it may make me feel better to get my B cells destroyed. I cant have a Spenectomy cos of age (64) and heath). Rituximab is very tollerable and first line of defence with good results. Sorry no Cure though. but some people have goe 20 years with SMZL.

Do resurch and decide what you feel is best for you. Will try and post results after 16/1/2019 All the best and a positive view to all medical things is a good statr.

Hi, I was diagnosed with SMZL in november.My spleen was up to22cm. Had  a splenectomy 3 days after christmas. I spent 3 nights in hospital before they sent me home.Even before I left hospital I could tell the chronic fatigue was much better. Retuximab and chemo were not offered to me,I think because of my huge spleen . Been trying to get more information about SMZL on the interweb but it goes into long  words I can't understand!! Living without a spleen is not that bad,although you do have to take antibiotics for the rest of your life.I have a friend who had hers out 22 years ago.

  Seeing the haemotologist next week, trying to make a list of the right questions to ask! Sorry this is probably not much help to you,but maybe someone else.

                       Kind wishes, John.

Hi. I’m in the US.  I was diagnosed April 2018.  I have a spleen 26cm.  Tried rituxan. Didn’t work. Also tried a pill call ibruvica to shrink the spleen.  The results weren’t that great.  So now I’m going into the hospital to remove spleen. Nothing bothers me just the fullness when I eat   

Hi Sue,  splenectomy is probably the right way to go,it is a fairly big operation but straightforward enough .I had to have a blood transfusion the day before my 0p. 2 units, don't know if you'll have that as things are different in the states. As I said previously I was sent home after 3 nights. Very sore for a week or 2 but soon gets better.I still havn't seen the haemotologist [ got my appointments mixed up] so still in the dark as to what happens next.

        Hope your op. goes well, please let me know, all the best John.

Hi Hollie

how are things now? I had 6 sessions of chemo and Rituximab last year for SMZL, my spleen was 229 mm, I am now on a 2 year maintainance period of Rituximab injections. I found the treatment ok but very tiring, I continue to get easily tired which I struggle with, I was a big walker and love to work on my wild garden, but just can’t do what I did. I am a little concerned with what happens after the 2 year period, as the treatment will not be covered by NHS, so I have to hope a cheaper alternative might be found, I also have asbestosis which is not a good link to have with SMZL. But tell your partner that if he hasn’t already started treatment that it’s not so bad, the worst part is the que for the bloody car park.

I wish you both good luck

dutch

Hello everyone 

I’m now 58 and doing well.  I was diagnosed with SMZL in 2014.  It was a complete shock.  I’d been complaining for years of pain, sweating etc., and it was thought to be menopause.  In December 2013 I lost my voice and was so tired.  My new GP was suspicious of anemia results and when I complained of swelling he fast tracked tests on nhs.  It was SMZL stage IV and I was so shocked and having recently lost 2 friends to cancer and whose chemo had been unsuccessful I was worried and suggested I had a few weeks without treatment.  I was told it was too late to wait and that my story was not necessarily the same as my deceased friend’s.  I had rituximab and chemo for 6 weeks and 18 months rituximab maintenance.  I was worried about future funding but feel assured that if it was necessary I’d get it.  Nhs have been fantastic and I’m doing really well.  I’ve had other issues which worried me and I thought I may be relapsing but it turns out I have Crohn’s disease now.  I’m receiving treatment and still in remission.  It’s scary but you’ll probably never be that ill ever again because you’re now looking out for symptoms and getting checked.  Rituximab had to be administered slowly as I seemed to overhead but I got used to it and I’m so glad I had it.  My spleen was enlarged because the bad blood caused it and the short chemo course sorted that out.  

Good luck.

Ann