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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
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,
Cancer Chat moderator
Hi, new to this board, I am posting for my mum, she will be 80 in April this year.
Twenty years ago she was diagnosed with a very rare (8 : 1 million) condition called Amyloidosis, we are in Scotland and she was lucky she received excellent diagnostics and treatment plans at the Royal Free in London which is the centre of excellence for Amyloidosis in Europe, our local hospital gave her the recommended treatment of high dose chemotherapy. Thankfully she has been in remission for 15+ years but her spleen and kidneys were irreversibly damaged. She was put on daily antibiotics for her spleen and kidney function was closely monitored.
3.5 years ago while at the Royal Free for a 2 day Amyloidosis check up with my sister she was sent home with instructions to attend her local hospital immediately on landing. That night my dad was home alone and died of a heart attack. Mums spleen was the size of a ream of paper, she was severely anemic and needed two blood transfusions and we had to go in the next day and tell her her husband of 55 years had died. A few weeks later she had her diagnosis of SMZL.
She was treated with Rituximab, was hospitalised after the first dose for 10 days as her potassium levels were dangerously high, doctors don’t know why as it’s not a side effect of Rituximab. After the potassium issues were finally resolved she continued the Rituximab treatment and tolerated it well. Her spleen shrunk and everything has been ok for 3 years.
18 months ago her kidneys failed and she is now on haemodialysis 3 times a week.
Just before Christmas we noticed she had been losing weight and a routine blood test showed low platlets. A CT scan between Christmas and new year showed a recurrence of her SMZL, she starts Rituximab again on Friday .
i feel more worried this time, she is nearly 80 and frail, due to past chemo she can’t have it again, a splenectomy operation is not an option for her. She is on dialysis this time and the consultants don’t seem to know how/if this will affect her Rituximab treatment which successfully sent her into remission last time. Has anyone here had multiple Rituximab treatments and remissions? I guess SMZL is too rare to find someone with experience of dialysis and Rituximab too?
I am new to this chat as well, but thought I would share my experience even though I live in the U.S. I was diagnosed at age 53 with SMZL in October 2012 at which point I had a massive spleen ("Frankenspleen")and 70% bone marrow involvement. I had four, once a week, infusions of Rituxan and my spleen decreased in size immediately, much to my great relief. I had side effects from the Rituxan, but only during the infusions and my fusion clinic managed them well. My numbers didn't improve much though and my spleen began to increase in size again so I had five more rounds of Rituxan in April-May of 2013 and a splenectomy in May 2013. Goodbye Frankenspleen. I have been fit as a fiddle ever since. Getting rid of that nasty spleen, which I was initially loathe to do, was the best decision. My counts have all been good and I now only see the oncologist once a year. I thought I had a certain expiration date when I was diagnosed and I worried constantly about dying before my sons were grown, but I don't even think about that anymore and they are now 18 and 20. I still hold my breath when I go for my yearly check, but I know that Rituxan will be there again should I need treatment again. Happy to answer any questions anyone may have.
Cheers to good health!