Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Hi Viki. You are right, my AML diagnosis was a complete shock. To that point, I’d seldom ever been sick or hospitalized except for the birth of our daughter. I did everything right! Ate super healthy, exercised, didn’t smoke and had occasional glasses of wine! At 65, I was feeling great and thought I might just cruise into my ‘golden years’ without an issue. Hah! Mother Nature had other plans…LOL. Anyway, lots of chemo and a bone marrow transplant 5 years ago has me in a durable remission. I quite honestly feel that nothing ever happened.
I learned that things I feared most in life such cancer or chemo, turned out not to be the worst things in life.
I’m so grateful for the medical care I received at my local clinic and Mayo-Rochester. Without their dedication and concern, quite frankly I’d be pushing up daisies from the underside many years ago already.
That’s why I’m here in Connect…to offer hope and encouragement for anyone faced with a blood or bone marrow cancer/condition.

I started a new discussion a few years ago for other bone marrow transplant members and shared my experience with both AML and the transplant.
This is one of my replies to another member who shared her story:
https://connect.mayoclinic.org/comment/335081/

A few years ago, I was able to actually meet a young woman I mentored through her transplant. An editor from Mayo picked up the story and published the article. Sky, the young woman in the story has now graduated from her university and is heading to grad school!

I’m so happy that you’re doing well with your treatments, Viki. Better living through chemistry, right? 😅

Hi Lori, I looked up Acute Myeloid Leukemia and I can’t even imagine what a shock you must have got from getting such a diagnosis, and I’m so very glad that you have got the treatment that you have, and the amazing result that you have also. I am very interested to know just what was done to turn things around for you, that’s if you wish to share this.
Viki

Hi @paris1943 I read back through your previous replies to see you finished your chemo for SMZL in late January. I’m sure you’re glad that’s behind you! You also had your spleen removed as part of your treatment. Were there any adjustments you’ve had to make with the loss of your spleen?

Every 2 months since Chemo.

Sure thing Lori.
I will keep you in my prays for continued success in your situation.
Viki

That’s excellent news that the Rituximab is working so well for you. I had similar positive results and was happy this was available!
That first dose of Rituximab is notorious for a minor reaction. My doctor had alerted me that this might happen but that the infusion teams are ready for any contingency know what to do…and they did! LOL. After that, each one was smooth sailing.
I hope you’ll continue to keep us updated in Connect, please?

Hi Lori, I visit my oncologist once every second month, have a blood test etc and a maintenance dose of our favourite drug, Rituximab and I’m free for another 2 months. In January I will be finishing the maintenance dose, and wait a few months and have all the scans, bone marrow etc tests again. On the whole except for that very first dose of Rituximab it has all gone VERY well.

Welcome to Connect, @hpw. Thank you and (@vikitrees in this reply) https://connect.mayoclinic.org/comment/1100575/
for giving such positive and encouraging messages for treating your SMZL with Rituximab and/or Bendamustine. These are frontline medications that have had a good track record in bringing several lymphomas and other blood conditions under control. I also received Rituximab for a B-Cell inflammatory issue and it was a wonder drug for me.

How often do you have followup appointments with your oncologist?

I was diagnosed with stage 4 SPZL and felt pretty concerned BUT after just 6 months of twice a month Retuximab treatments I was blessed with a ‘complete remission’. Sure I would like to be told that I am cured, but at 74 years (of pretty good general health), I figure I am on bonus time anyway. Most people on Retuximab WILL go into remission. Have heart, have faith, talk to your body, praise it for all that is has blessed you with over the years, and each morning thank God for another day and each night ask for healing while you sleep. Viki. Aussie Girl

This is so reassuring for the rest of us. Thanks.