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I'm new here with Splenic Marginal Zone Lymphoma

31 Dec 2017 02:52


I'm a 53 year old women who was diagnosed with SMZL in February of 2017. I'm new here and I wanted to know how other people with the same diagnosis as myself are doing?  

Ive had a month worth of treatment using only Rituxiumb and still have my spleen. I'm at a stage 4 and am currently on a watch and wait approach. 

Im doing okay but lately I've had new bruises very tired and terrible pain in my neck/shoulder left side. Is this normal and should I rush to see my oncologist?  My next appointment isn't til January 19. 

Please share your story and thoughts. 

Thank you!


Re: I'm new here with Splenic Marginal Zone Lymphoma

2 Jan 2018 08:00 in response to claudia

Welcome to Cancer Chat, Claudia.

I'm sorry to hear that you were diagnosed with splenic marginal zone lymphoma back in February and that you are feeling poorly lately.

Hopefully, you will soon get to chat and meet other members here who will share their experiences with you. I remember seeing a post this morning where others were discussing their SMZL diagnosis so you might be interested in having a look there and maybe join the conversation? 

I hope this helps.

Good luck with your appointment on the 19th of January, if you find a moment come back and let us know how it went.

Warm wishes,

Renata, Cancer Chat Moderator

Re: I'm new here with Splenic Marginal Zone Lymphoma

14 Jan 2018 03:15 in response to Moderator Renata

Hi Claudia Welcome to the very small group of people with SMZL. Some good and some bad news. First the bad. This is a very rare form of lymphoma - only about 1% of people with lymphoma are Smzl - so normally less than 1:100,000 of the population. This means that many haematologists and oncologists have little (if any) experience with smzl and will sometimes struggle for answers for you. It also often presents with some strange symptoms that might not initially be thought to be associated - so dont ever give up seeking answers. The good news is that you have actually got the diagnosis and it has not been named as something else - mine was misdiagnosed as CLL for 5 years before finally I went and got a 2nd opinion and had the correct tests done. Have they done cytology on your blood tests and have you had a bone marrow biopsy yet ? The biopsy sounds nasty but hey I was in and out of the surgery in 20mins and on a plane home 2 hours later in the day. The good news is that Ritux can be a very good treatment by itself in many cases. I think that it should be followed with a maintenance dose every 3 months or so, but I am not sure of policy in the UK and still in my country not done. After your first rounds each one gets easier - and ideally you should get 2 years between treatment. There is no reason that you cant get a long life with the correct regular testing and treatment. In my own case 3 years after the first batch of treatments I started getting significant abdominal pain attacks which involved hospital admission for a few days on high morphine doses and they said it was not related to my smzl. How wrong they were and after a 2nd and 3rd opinion I was on Ritux again and have been great for the past 2 years. The other good news is there are some interesting current tests going on and treatment after the Ritux alone stops working for you there will be some good options that are not too agressive. My actions ? - after the first few months of why me questions, I was working as hard as ever and leading an active life. Yes I take various vitamin suppliments and I am sure these help. My wife and I also travel overseas for 3 months each year and while there are some bad days they are not going to get me and at 71 years old I am planning many years in front of me. Have fun, keep smiling and good luck - and dont be afraid to get a 2nd opinion if you are not happy with the first answers. Ross

Re: I'm new here with Splenic Marginal Zone Lymphoma

18 Jan 2018 07:10 in response to Rossco

Hello Ross,

Thank you for reaching out, I do appreciate your information and insight. 

I knew that this is a rare form of Lymphoma and that's why I appreciate hearing other people's journeys. For myself, I did have a bone marrow biopsy, and that was the test that confirmed what they were looking for. I have had a month of ritux and it did the job of shrinking my spleen and my blood work have been improved too.

I'm going on my one year since being diagnosed, and I have an appointment this Friday, January 19. I'm always a little anxious going to my appointments, but have faith that God will see me thru this. 

My goal is to live my best life and not have this define me.  I can't say it's always easy as some days it does hit me and brings me down. I don't always share it with my husband because I don't want him to worry or feel bad. 

It does give me hope and uplifting to know that others as yourself are doing well living with this. 

Thank you again for listening and sharing some of your story with me. I'll pray for you to stay in good health!!

warmest Regards,


Re: I'm new here with Splenic Marginal Zone Lymphoma

19 Jan 2018 05:49 in response to claudia

Hi Claudia Hope your appointment went well today. Here is something I found to know if your spleen is increasing in size - while an ultrasound or CT scan is obviously best, I know because of the pain or discomfort when lying on my left hand side. If the pain increases well you can suspect the answer. Also if you find your appetite decreasing, this can be because an enlarged spleen is pushing on the stomach and telling you it is full. Either case seek conformation by more traditional means. But the above is a good first line indication. Regards Ross

Re: I'm new here with Splenic Marginal Zone Lymphoma

27 Jan 2018 03:04 in response to Rossco

Hi Ross,

my appointment went well, with my blood work within normal range. It was on the low normal range but still normal. They did schedule me for an ultrasound since I'm coming up to my one year since treatment. I had it done on Wednesday and I still haven't heard about the results as if yet. 

I know of all the symptoms you told me about because I had all of them prior to being diagnosed. I waited way to long to seek medical help last year and I never want to feel like that again. I also have an autoimmune disease, which is what I kept blaming it on. Now looking back and knowing all the symptoms I had I know it was all from the cancer. 

I want to know if you are still going in every 3 months for blood work or any at all. Also do you get ultrasounds on your spleen routinely?  I guess I want to know how you are doing living with this. 

I do hope your doing well and look forward to hearing about how you're doing. 

Thank you!


Re: I'm new here with Splenic Marginal Zone Lymphoma

27 Jan 2018 07:59 in response to claudia

Hi Claudia

Great your appontment went well. Yes I usually have a blood test each 3 months but sometimes when we are away I push it out longer particularly if I am feeling fine. I actually have a graph programme and graph my results which gives me my own information as to how they are going. You need to know what is normal and when to be concerned at something e.g. Platelets under 100 etc BUT remember that SMZL does not necessarily follow the same rules as other lymphomas and even if your blood results are in the "normal" range but you have an unexplained weight loss or are really tired all the time, or are jaundiced then probably time for treatment regardless of what the blood tests say. SMZl can produce blood results that are too low or too high or within normal. I havent bothered with an ultrasound for some years - i can tell from the left hand side pain whether imy spleen is getting bigger - but I do have a CT scan aroung each 18 months and  that seems to give the doctors more information than an ultrasound. It is probably best not to have too many CT scans as too many radio waves are not that good for you. 

Are you taking any vitamin suppliments ? I take a daily multivitamin as well as a yoghurt probiotic and at times I will also take some antacids which seems to really settle down any gut problems but obviously everyone may have different issues which need assistance. My philosophy basically I will take whatever to help give me a great day - well anything legal that is.

so dont stress, take each day as it comes, and try and recognise whatever it is that your body tells you each day. If it says slow down - do that and have a day off lying in the sun or on the couch.  An early night is fine, or a late night is also fine. Some days I am up by 6am and other days it is breakfast in bed and not up until 10. Your rules.  You are the person in charge.

Have fun, keep smiling and try and keep positive