Diagnosis results Splenic Marginal Zone Lymphoma. Bone marrow shows mutation MYD88 L265p

[Obiecat]

I’m in the UK, just turned 60 female,and have private medical insurance. The Prof says I have Splenic Marginal Zone Lymphoma stage 4 as it is in the bone marrow as well as a 15cm enlarged spleen . The pet scan also picked up a small papillary thyroid cancer - had this biopsied and awaiting appt with Endocrinologist ( it’s very tiny) and unrelated apparently. My bone marrow trephine (a small piece of bone) was unusable. And the marrow aspirate not great quality either but did reveal some information- I have a MYD88 L265p mutation, I also have rare CD138 positive plasma cells present, these also indicate LPL lymphoma ( similar to WM but I fortunately do not have the paraprotein) . The bone marrow biopsy took an hour of excruciating pain - the operative was terrible- my sister in law was present and she has a medical background in stem cell and bone marrow transplants- said it was the worst test she had ever seen and thought the samples would be poor( she did not want to tell me as it would upset me).

So I have had no Fish test, or Genome tests- I’ve asked for a fish test.

I’m on watchful waiting, blood tests every 3 months.- my red blood cells are ok, but elevated lymphocytes- not too high 11,000. I don’t know how much bone marrow infiltration there is.

Treatment proposed ( not yet) Rituxan and Bendimustine ( not sure of spelling). How has this worked for other SMZL people- so few of us? I’m also worried about the thyroid- the view again is watchful waiting as it is small rather than surgery. I await my appointment for more information.

Prof says lots of new treatments are on the horizon including CarT for indolent Lymphomas.

Odd symptoms- small pinprick red spots all over- mostly on the abdomen- not itchy. My platelets are normal. But spreading- chest, arms, worried I’ll get them on my face!

Stabbing pains in back of my head, aches in some joints, stomach, all intermittent, my chin, feet. Very weird- does anyone else get this? Does anyone have autoimmune issues? Mzl is closely linked to autoimmunity. Mainly noticed when not moving.

I have no other tumours- my Pet/ct scan and gastroscopy were all ok ( except for the thyroid),

Do you get tumours elsewhere with this?

Does anyone take turmeric: cut cumin supplements?

I have cut out sugar, eat little red meat and loads of fruit and veggies and walking a lot more.

I had a week away and walked for hours every day and my white bloods dropped to normal and my lymphocytes count also dropped by 1,000. Latest test less walking they’ve crept back up.

I’m thinking now of going back on NHS as I think they offer more after support than private. But it was great not to have to wait months for tests. I started seeing my GP back in July, so it has taken about 4 months to get to this stage. Would like to hear from others who have this. I’m less stressed now that I have a diagnosis.

[Sunfishjoy]

Hello Obiecat. I am New York based and was diagnosed with mzl after three months of tests and uncertainty. There are two Facebook support groups you might like to join. One is for mzl in general and the second is for smzl specifically. I’ve found the members of these groups to be very knowledgeable and kind. Some members are uk based and can recommend specific doctors. Your bone marrow biopsy sounds horrific. I had one last May and didn’t feel any discomfort. The slides were good and I was able to have them analyzed by three differed labs. I just started rituxan and all my blood levels bounced back to normal after first treatment. I have two more to go then probably w and w for hopefully a long time. Fingers crossed. Please let me know if there are any questions I might be able to help answer.

[Obiecat in reply to Sunfishjoy]

Dear Babsync, thank you very much for your suggestions and I have joined the Facebook support groups, so don’t feel so alone with this cancer diagnosis.What type of MZL do you have?

Was it Rituxan on its own that you had? Did you have any bone marrow involvement? Very pleased for you that your treatment is working.

I’m now waiting to be seen by a thyroid specialist for this small cancer they detected in my pet scan. I don’t want treatment for this to aggravate my lymphoma. Do the oncology specialists look holistically at overall treatments? If you have 2 different types of cancers?

Best wishes

Michelle

[Sunfishjoy in reply to Obiecat]

Hi again. Glad you joined the groups. I have smzl. I’ve had two Rituxan treatments. I’m being followed at two major hospitals in nyc and both thought I should do Rituxan now because my platelets were falling and I was becoming anemic. I’m not sure about bone marrow involvement but I did have a bmb in May. My spleen was 16cm and I am cd20 positive so CLL was ruled out as well as other leukemias.

I’m feeling well and have had no colds or viruses for years and hope that continues.

I hope you won’t need to treat the thyroid nodule. Please keep me posted on your progress.

[Murray58]

My story is not the same as yours but may be useful. Diagnosis of Stage 2 MZL in 2015 after CT scan for a different purpose (lung issue) was only 6 weeks later. Two weeks between CT scan and PETscan and further two weeks for tumour biopsy and after results two weeks to start of treatment. This was in the NHS cancer pathway that has time targets for both tests and from diagnosis to treatment. I started Ritaxamab and chlorambucil for 6 months. Have been in remission for 3.5 years but it will reoccur and can be treated again. Wishing you luck and I have had tremendous support from NHS and Macmillan funded specialist nurses during and post treatment.

[Obiecat in reply to Murray58]

Thank you. Which NHS Hospital did you attend? Which MZL do you have? Best wishes.

[Murray58 in reply to Obiecat]

I think it was Nodal MZL but not sure I was ever told. Large tumour surrounding the main vein in my abdomen. I am under the Lymphoma team at Southampton General. A very busy clinic that serves the region. About 10 specialist consultants. Believe run the CAR-T trial there as have been invited to be a patient on the trial advisory group. I get to edit patient facing literature so far. Often long waits for outpatient clinics so always go for as early as I can in terms of appointments.

[Obiecat in reply to Murray58]

Dear Murray, thank you for the information. Are they running the CarT trials for MZL patients? What sort of literature are you editing? Southampton is too far for me. I’m really interested in this treatment but it seems there are quite a few side effects. Best wishes Michelle

[Murray58 in reply to Obiecat]

They are running the trial for Diffuse Large B Cell Lymphoma DCBL - which is a high grade fast growing lymphoma. I was asked to edit the patient information sheet as a non Health professional to make sure it was patient friendly.

[Murray58 in reply to Murray58]

PS. I am on low carb/sugar to control T2 diabetes that I didn’t have any sign of before chemo! Beware the fruit. Full of sugar. I have asked about low carb as a deterrent to lymphoma reoccurrence and did not get support on that one back. Not yet breached the treatment pathway walls 🙄

[Andilynn]

Hello Obiecat, I’m sorry you have to deal with this issue. I was diagnosed with SMZL five years ago at age 59. Like most SMZL patients it was stage 4 at diagnosis. I had multiple affected nodes in the chest and abdomen and spleen was 22 cm. It was found in abnormal bloodwork with platelets very low and other markers. I had four treatments of Rituxan right away. Then I had maintenance therapy with Rituxan for two years. I continue to be in remission and have bloodwork and check ups with my oncologist every six months. Eat well, rest and keep a positive attitude. I hope you remain in watch and wait a long time, but if you do need treatment, know that you will be okay.

Best,

Andi

[Obiecat in reply to Andilynn]

Dear Andilynn, thank you for your kind message. That is great that you are in remission. Did you have any other odd symptoms? I have aches, pains in my feet, hands, body and the back of my head, they come and go. Did you have bone pain? It seems more nerve pain to me and immune related worse at night and wakes me up, this symptom is relatively new- about a month and seems to be getting worse. Started with pins and needles and cramps in the feet and numb hands.

Best wishes

[Andilynn in reply to Obiecat]

Dear Obiecat,

I developed peripheral neuropathy about four years before I was diagnosed with SMZL. I had terrible pain in my feet, then started having nerve pain in other places too. I don’t know if the lymphoma had anything to do with it, but it is possible. The only symptoms I had in the months prior to diagnosis were broken blood vessels in the whites of my eyes all the time, a huge abdomen (looked like I was 4 months pregnant because spleen was the size of a full term baby) and I was slightly tired which was unusual for me. I didn’t know until routine bloodwork showed I was very anemic.

It wouldn’t surprise me if your pain were related to the SMZL, but that is a good question for your doctor.

Keeping positive healing thoughts going for you!

~ Andi

[Obiecat]

Thank you Andi, the Prof can’t seem to see a connection! Were you given anything for the pain? I’m not anaemia, but have a slightly enlarged spleen. I think it is too much of a co- incidence. I wonder if anyone else has had nerve/ joint aches and pains? Did the Rituxan eliminate the neuropathy?

Best wishes

Michelle

[Andilynn in reply to Obiecat]

I’ve been on pregabalin daily since being diagnosed with peripheral neuropathy eight years ago (5 years before the SMZL diagnosis). Rituxan put the lymphoma into remission, but did not treat the nerve pain.

I hope by now you’ve gotten a diagnosis and treatment plan. Please update us when you can.

Best wishes for your recovery,

Andi