Anybody else have SMZL?

Outdoorgirl63 , Hi I'm Jean (Gypsy rover) , I just read what you put , I hope you find some , I also would like to find someone that had Non Hodgkin's B cell Burkitt's lymphoma , but I take us as 1 big family , no matter what type of cancer we had , we went through a battle to kick cancer's backside & we're either still doing it or in remission , I'm here for a chat if you need 1.. have a fab weekend Xx

Hi outdoorgirl63 and warm welcome to our little corner of Community although sorry that you had to find us and especially sorry to hear about your Splenic marginal zone diagnosis. 

I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed way back in 1999 with a rare skin Non Hodgkin’s Lymphoma (CTCL) so although my 'type' is different I know this journey rather well.

We have had a few folks with Splenic Marginal Zone Lymphoma in the group so lets see if they are still looking in. You can also put Splenic Marginal Zone Lymphoma or SMZL into the search tool  near the top and have a look at the various old posts and as aways you can hit reply and see if you connect in with others.

The BOLD link above is taken from the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups.

They also have a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same Lymphoma Type/treatment journey.

What is your story with regards to treatment etc.

We are here to hep as best as we can ((hugs))

Jean, have you tried putting Burkitt's lymphoma into the swarth tool?

Do also remember that Lymphoma Action Buddy Service may well have someone who has walked the same Lymphoma Type/treatment journey as you ((hugs))

Evening Mike , no I haven't I will try it tomorrow , I'll also see if I can arrange for a buddy system to help me , good new yesterday my PIP claim was approved so that'll help me money wise , I called my sis last night , after getting Andrew ( my son ) showered , I had 1 myself , As drying myself I had a flashback to hospital ( where it came from -  no idea ) and couldn't stop crying , I pulled myself together before going downstairs to see Andrew , but today I'm more settled & my thoughts were positive as how far I have came since I went into hospital , I now my recovery journey is a slow process , baby steps and I will get there , thank you again for saying about the Maggie's center , I've been using it , have a lovely weekend with the family and I'll keep you posted 

Good news on the PIP Jean

Thanks much!  I'll give it a search shot

Hello Outdoorgirl63,  I was diagnosed with SMZL in 2010 and , like you, felt lost and lonely when first diagnosed.

I find the information on  Lymphoma Action website useful. I don’t know if you’ve noticed that they are hosting a webinar on 5 th May discussing how those of us with lymphoma can manage our lives now restrictions have been lifted. I think this  may be helpful.

You may have already found the Marginal Zone  Non Hodgkin’s support group on Facebook where there are others with the same diagnosis.

I am an infrequent visitor to this group so sorry for slow response.

If I can help please do let me know.

With my warmest wishes

Shesh

Thanks!  I went on fb and saw that SMZL had a fb page, so I'm joining.  

I don't know if I'm aloud to ask, Shesh, but how are you feeling these days?  What treatments have you had?  I have only had Rituxin in 2019 and it shrunk my spleen. Now my doctor has me on a hide and watch type treatment where I go in every 6 months to see how much my spleen has grown.  When it gets too big, I'll get Rituxin again.  I don't feel bad.  I am tired, but I think that's from getting older.  I'm 58 and will be 59 this year.  I still work, stay busy, and am not really affected.  Maybe my tiredness is from the cancer, and I would be even more productive if I didn't have it, but I just don't know. I do have diabetes too, which is controlled by diet, but I am gaining 5 pounds a year and feel like I have no control over it.  

If you don't want to share, that's fine, just curious.

Thanks!

Hello Outdoorgirl63,

I don’t mind sharing at all . I feel ok but as you have found, I too seem to tire much more readily than I would like.

It is hard to know how much is due to the lymphoma .

I know I need to take more exercise as my weight has crept up and I am said to be Pre diabetic , although that’s a term which some medical professionals would prefer not to use.

I seem to have good intentions re exercise but lack motivation, especially in cold weather.

I am pleased to read that your treatment in 2019 successfully reduced the size of your spleen.

Watch and wait can seem odd , I found that idea quite challenging when I was first diagnosed but have got used to the idea

.Happy to chat whenever you wish.

I hope you find the SMZL fb group helpful .  There are regional support groups organised by Lymphoma Action which are currently held online once a month , I don’t know if you’ve tried these. Less likely though to meet others with SMZL.

with my best wishes

Shesh.