Newly diagnosed after thinking it was CLL

[Maryandallan]

Hi everyone, I am a newcomer to your community having just found out my husband has MZNHL. We had been told by the Haematologist 4 weeks ago that it was very likely CLL and I had joined their community to find out more. As the blood markers from Allan's CBC were inconclusive the Haematologist ordered a BMB and yesterday we found out that Allan has NHL which involves the B cells with Bone marrow infiltration putting him at stage I've. The Haematologist has ordered a CT scan to discover which nodes are involved but we already know Allan has an enlarged spleen and no external node enlargement so are thinking it could be Splenic MZNHL? Perhaps someone in the community could comment on that as we are not up to speed with this new diagnosis just yet. We came away with a booklet from the Lymphoma Association so realise that CLL is a cousin to this condition which explains the earlier predicted scenario. Apparently treatments are similar too and given that this is also a indolent disease we are told we may be at the watch and wait stage for some time before treatment is necessary. Allan is asymptomatic at this moment in time.

We hope you will welcome us to your community and we will be most appreciative of any advice/support offered to us.

Regards

Mary

[laylalulu]

Welcome, I too have splenic mznhl. Today is 3 years since I had my cancerous spleen removed and I am on watch and wait. I also had 50% bone marrow involvement with a couple of slightly enlarged nodes. I posted on FB I am blessed everyday lol, don't panic, my head was filled with all sorts of bad thoughts when I was first diagnosed and very worried. As you read so many success stories on here you will feel more confident this is treatable although no cure, hopefully we will have many years to come. Read read read educate yourself, take good care of yourself with diet and exercise and keep busy. Good luck stay in touch

[Maryandallan in reply to laylalulu]

Hi there, Thankyou so much for your words of encouragement! It is such a comfort to know that there is someone out there going through the same situations you find yourself in. It is actually my husband Allan who has the biggest burden of this diagnosis but he has encouraged me to join this support group and when I speak I speak for both of us. I wish you well in your journey and hope you have many many years of good health despite having this disease!

Regards

Mary

[laylalulu in reply to Maryandallan]

Thank you Mary , the initial diagnosis is the scary part you hear stage 4 and our hearts sink a bit. I try not to worry too much but keep a check on how I'm feeling. Also being a caretaker of someone going through cancer is very stressful so take care of yourself too. My mom and I took care of my dad going through his chemo and it wasn't easy, no one understands like someone who has been through this journey this is why I feel connected to this group take care

[Maryandallan in reply to laylalulu]

Many thanks for your message and empathy, I will keep posting as things crop up. Wishing you and your family well .

Regards

Mary

[Andilynn]

Hello Mary,

I was diagnosed with splenic marginal zone lymphoma in the fall of 2014. I had routine blood work that came back very abnormal. My doctor sent me to a hematologist who found that my spleen was the size of a football. I had a lot of blood work, a spleen ultrasound, CT scans and a BMB which showed it was SMZL. Within a couple weeks I started treatment with Rituxan infusions. Following four weeks of that, I had two years of maintenance Rituxan. Currently, I am in remission and have no problems with the lymphoma.

I am happy to help you in any way I can, so feel free to contact me. This is a wonderful and supportive group with lots of personal stories to share.

I hope your husband does well as a watch and wait patient or new to treatment. Please keep us posted as we will definitely be keeping both of you in our thoughts.

~Andi

[Maryandallan in reply to Andilynn]

Many thanks Andi, we are awaiting a date for our first CT scan and all is well at the moment. We wouldn't have chosen this journey but are thankful for all the support shown to us already. We are coming to terms with the diagnosis and hopeful that our period of watch and wait will be a long one before any treatment is necessary. It has reinforced our philosophy of living every day to the max and not putting things off. So glad you have had a good result from your treatment as a spleen the size of a football must have been really uncomfortable. Many thanks again and we will keep you informed of our continued progress.

Regards

Mary