Hi all Smzl ers! I've been trying to figure out how to post for awhile and am so happy to finally be connected. Since you all have the most recent posts regarding SMZL, I hope to learn from your experiences and share what I am learning.

i was diagnosed with stage lV SMZL a month ago in complete shock. I am a very active 57 yr old in Boulder Colorado with virtually no symptoms other than anemia and a swollen spleen. The testing, scans and bone marrow biopsies all happened so fast that I could barely keep up with the impeding change in my life, Let alone breathe. Then the research began and the unfortunate lack of information makes this all the more challenging. 

Have any of you discovered any underlying blood disorder that leads to this? It looks like most of the specialists/ oncologists are from the mediterranean region. That leads me to believe that SMZL is more prevalent in that area. What are your thoughts?

i just finished 4 weeks of Rituxin and Dexamethasone... feeling like I've been on a terrifying rollercoaster ride.

i hope that you are well and that we can discover treatments to increase our chances of longevity together. 

Best regatds, Marina

Hello, I too have recently been diagnosed with SMZL with Acquired Angioedma, and would like to hear more about how you have been doing. I was due to have my spleen removed tomorrow, but they are now thinking it is too risky for surgery because I had a bad angioedema attack last week after a dental appointment which compromised my breathing. It is such a rare combination that nobody here in Wales seems to know what to do about it, and I am waiting for my Haematologist to liaise with some higher authority about it all. Thanks, Judith.

Sorry Mikey, I can now see that you replied back in June, I haven't been on here for a while. Thanks.

Hello again, I would love to see the citation please if that's ok.

My doctor suggested splenectomy as it would give the same results as chemo .....about 10 - 15 yrs remission. Then when it comes back I can then have chemo. Apparently if you have chemo twice in your life it doesn't work as well the second time around. That's why the splenectomy was suggested as a first treatment. I have had about 10 swellings over 2 years but they are getting more frequent and worse, for the first time this week it affected my breathing which was scary, and resulted in a hospital stay. It was only seeing me all swollen that made my Haematologist sit up and take note. He had not heard of the link up and thought I was fussing about nothing. He is now consulting with experts about it. I have had this for over 2 years, and have been diagnosed in June this year so I feel it's time something was done. I think he's looking into the possibility of there being some component very lacking in my blood, because he did mention that maybe I could have a transfusion of this simply to get me through the operation safely. I'm still waiting for him to get back to me. I would be interested to hear what the side effects of Rituximab are, how severe they were and did they stop when you finished the treatment ?  Thanks, Judith.

Hello Tandy, thank you for sharing your info, it's so rare that it's good to hear from someone who has been through the same thing. As I said before, my splenectomy was cancelled due to the severe swelling I had from dental treatment a week before. Six weeks ago I finished a course of 6 Rituximab infusions, and I was lucky enough to have no side effects whatsoever, I even had more energy than normal (due to the high dosage Prednisolone, I think). I do feel slightly more tired than normal now, but that's all. I had tranexamic acid when I was having the treatment but I'm not on it now. I'm delighted to say that it seems the swellings have stopped since I had the treatment, as I haven't had one for over 6 weeks and I was getting almost one a week. I banged my elbow on the door handle yesterday, and previously that would have swollen up really badly down to my fingertips and up to my shoulder, but nothing! ..... Great!

I note that you say you've had this since 2010, and I'm wondering how have you been over the last 7 years....has life been normal for you? Or have you had relapses? I would be very grateful for as much info on your present health as possible. I feel very well at the moment, but I do worry what will happen when it comes back, because my doctor says it definitely will come back at some stage. I have not been referred to an immunologist, I'm afraid here in Pembrokeshire we are very much in a backwater, and they do not seem to know anything at all about the angioedema connection, although one of the junior doctors did tell me that they were now having seminars on my condition as it it so rare.  He even told me that I'm quite a celebrity in the hospital due to this! I'm having a CT scan tomorrow to see if the lymph glands in my stomach have shrunk, as it had spread to them as well as my spleen and bone marrow. Had it spread to your bone marrow when you were diagnosed? That is the reason I was given a stage 4 diagnosis, and is yours a slow growing cancer like mine?  I am sorry to ramble on, but any information at all will be gratefully received.

This might sound like a trivial question, but I was wondering do you find it expensive to get travel insurance now, please? Thank you.

Hello Claudia, I went to my GP last March feeling exhausted, she ran some blood tests, and when they came back she simply said ’I think you’ve got Leukaemia’. She referred me to the Haematologist at my local hospital, who took a bone marrow sample, and then took until June to diagnose SMZL. I had the added complication of acquired angioedema which was connected to the Lymphoma and I have obviously had this Lymphoma for a couple of years, because that’s when I had my first swelling, but didn’t realise at the time what it was. He told me that as it had spread to my bone marrow I was classified as stage 4 already, but thankfully I had the indolent (slow growing) type, not an aggressive one. He recommended that I have my spleen removed as it would give me 10 to 15 years remission, and then when it comes back (and he says it definitely will) I can then have chemo. He said that if I had chemo first time round it never works as well the second time around, and by then I’d be too old for a splenectomy. I was due to have my spleen removed on 29th September but a week before I had a tooth out which caused my face and neck to swell up and I was rushed to hospital by ambulance as my windpipe was closing up. The doctor came to see me in A&E and said that no doctor would operate on me if that’s what happens with a simple tooth extraction, so it was back to the drawing board only a week before my op was due. I really didn’t want chemo which is what he was hinting at, so I asked if I could have immunotherapy which I had been googling. He agreed, and in October/November I had 6 sessions on 6 consecutive Mondays of the drug Rituximab. I had to stay overnight for the first one as they were expecting another swelling/bad reaction, but I’m pleased to say I sailed through the 6 sessions and not a single side effect at all. As the weeks progressed I could feel my spleen shrinking, and even now I get pains in my spleen and lymph glands which they say proves that the drug is still clearing out the bad cells from my body. I started feeling much better as soon as the treatment started, and I have to say that I now feel better than I have for a year or two. I had my post scan check up today and was delighted to be told that my blood is back to normal again, and that I’m now in remission. I asked what will happen when it comes back, and he said I’d have the same treatment again, to give another remission. I have to admit that this has been a big wake up call for me, and I now make sure that I live a more healthy life .... I go to bed earlier, eat less junk, and also drink less alcohol, not that I drank much before, but I’m now conscious of everything I put in my mouth and whether it’s bad for me or not. I’ve also stopped dying my hair, as I’ve been dying it dark brown for over 30 years, and this is probably a contributory factor to me getting cancer, because there is a lethal chemical in dye called Benzene which is a known carcinogen especially if used over a long period of time. I wish I’d known that before. The doctor told me today “Life's back to normal for you now”, I just hope it’s a fairly long life, I’m 64 this year and really hope I get to see my one year old grandson grow up. I’m also looking forward to booking a holiday soon, I had to cancel mine last year due to my diagnosis. It will be good to get a bit of sun again. That’s all I can think of for now, anything else you want to know, just ask. Good luck for your next appointment, let us know how it goes, and bye bye for now, Judith x

Hi Samaralou,

It's great to hear that you're feeling well and currently in remission, long may that last! 

I hope you don't mind, but I thought I'd point to some information we have on the website about hair dyes, as you mentioned your concern about a possible link with cancer: Cosmetics and toiletries. I hope it might set your mind at ease a little, and anyone else who might dye their hair frequently - since going a bit grey I certainly do ;)

Wishing you all the best,

Helen
Cancer Chat moderator