Wrong Post???

[doc1947g]

I was diagnosed Lymphoma of the Marginal Zone. Am I at the good site?

Thanks.

[Panz]

You certainly are at a super good place and we are so happy you found us. You are never along when you join our community. We come from all over and have very intelligent and caring people. I have had CLL for 33 years next month and I wish this community had been up and running. I often feel when people find us it can truly be the first day of the rest of your life…..it is unreal the support you will find here.

No question is a silly question and you will get answers….please avoid Goggle as so much of their info is outdated. Welcome aboard!!! 🙂

Panz 🙏☘️💕

[AussieNeil Partner Founder Admin]

MZL is similar to CLL, so you'll read of experiences with drugs used for both blood cancers, although doses and protocols can differ. MZL being less common than CLL, there aren't as many support communities as there are for CLL, so you may find this community helpful, provided you keep in mind that the support team is unable to validate whether the information provided to you is appropriate for those with MZL. You've done well completing your profile, but I suggest introducing yourself as having MZL in the first sentence. You can edit your profile via this link: healthunlocked.com/profile/....

If you decide you stay, you might want to consider changing your username to include the suffix _MZLnotCLL, but you are still likely to receive perhaps incorrect replies from helpful members assuming you have CLL. Here's how to change your username: support.healthunlocked.com/...

Neil

[Name-1]

I have Lymphoma of the Marginal Zone nodal/extranodal.My first Dg. was CLL/SLL (2011y.)In 2020y.,after biopsy lymph node and flow citometry ,my Dg is MZL.

I have many friends with many knowledze in this community.

Olga

[DebKat999 in reply to Name-1]

🙂 Hello Olga 💕

[Name-1 in reply to DebKat999]

Hello dear Debbie😍💕🌹

[81ue]

Yes, you're in the right spot.

I was diagnosed with leukemia and hospitalized, dealt with the emotions and shock, then got diagnosed with MZL, dealt with the emotions and shock. Then my cancer made no sense as it 'behaved like a CLL' but didn't exactly look like CLL or MZL and a specialist at a cancer center of a university diagnosed me as B-PLL (one of the things CLL can transform into is PLL). During the time doctors thought I had MZL, they treated me with similar meds to an aggressive CLL, then when they thought it was B-PLL, they treated me with similar meds to an aggressive CLL (no difference). Meds I was on since diagnosis included Imbruvica, Venclexta, and Rituxan and numerous other side-dish pills when needed (like allopurinol, famciclovir etc).

Welcome to the club no one wants to join but that is filled with very knowledgeable and kind people.

[Judyanne]

Hi doc1947g,

There are a few Facebook marginal zone sites: one for all 3 types of marginal zone, one for splenic marginal zone and one for extranodal marginal zone aka MALT. You may also find these sites helpful. Will try and post link.

[Judyanne]

m.facebook.com/groups/17349...

Here is a link to a marginal zone lymphoma site.

[doc1947g in reply to Judyanne]

Thanks.I was NEVER told which type I had.

They found trough a bone marrow biopsy, very painfull.

[Inklinggirl]

Hi doc1947g , so pleased to find a fellow confused person!! Two years ago, after undergoing immunophenotyping and a bone marrow biopsy I was told that, I didn't quite have CLL, but had something very similar to CLL. In my letters it said 'marginal zone lymphoma in leukaemic phase'?!! So, I looked up about marginal zone lymphoma and noted the three types. I asked my consultant about these three types to be told that it wasn't any of them! But it was closest to CLL! Since then I have tried multiple times to find out what exactly it is, only to be told that it is rare and that he doesn't know anyone else with it. He is a professor! He's stumped and so am I. I have been told that I might need treatment soon, but I have no idea what I would have as treatment and my consultant needs to pass me on to someone else as he's taking a back seat from clinical work. I have told him that I need to have support from a group... somewhere... and he told me to join a CLL one. In fact, I am doing research today to try and get a better grip on knowledge about this subject, knowing that my appointment with him next week might be one of my last with him. If you find out anything useful, please let me know and vice versa! Take care