Anyone with Marginal Zone NHL?

[Calipewings_2016]

Hello. I'm a 54 yr. old female and new here. I was just diagnosed with MZ-NHL (Marginal Zone) last month. Monday I'll be having a bone marrow biopsy and Tuesday a PET scan to help determine my treatment plan. Anyone else have MZ? I was told by my Oncologist that it's one of the better cancers to have.

[alicata1943]

Yes, I was diagnosed in 2012 with Splenic B Marginal Zone Lymphoma. I was 71 at the time. I was in the Watch & Wait stage until this summer. In July I began treatments of Rituxan. I had 4 treatments at one a week for four weeks. I then was told that I was in remission but the Oncologist recommended 2 years of maintenance. Rituxan again , one every 8 weeks. No hair loss and not to many side affects. The only side effects for me were tiredness and little digestive problems.

[Calipewings_2016 in reply to alicata1943]

You said you were in "Watch & wait,"

what happend that made them start treating you?

[alicata1943 in reply to Calipewings_2016]

My blood count numbers that were high increased and the ones that were low went lower. I was seeing the Oncologist every 6 months and then the Fall of 2015 I was put on Watch & Wait every 3 months. Blood drawn at each visit. I started treatment of Rituxan on July 27, 2016. On August 17th I was told I was in remission. I am now on a 2 year maintenance with Rituxan. Infusions every 8 weeks. No hair loss, quite tired though. from the treatments. I see the Oncologist before each treatment and blood is drawn. No port put in but IV for the infusions.

[laylalulu in reply to alicata1943]

How did it reoccur for you alicitia1943

[alicata1943 in reply to laylalulu]

No reoccurrence, After 4 infusions of Rituxan I was told I was in remission. I am now getting Rituxan Infusions every 8 weeks for 2 years for maintenance. This is to keep me in remission.

[skinkade in reply to alicata1943]

Are you still in remission?

[Janekite2015]

I have mantle cell, not one of the better ones! Just wanted to say hello and wish you well. Relax, and remember that most cancer is a chronic condition and not the sentence it used to be. Have fun everyday and do things you love.

[Calipewings_2016 in reply to Janekite2015]

Thank you for your reply.

[dbalthrop]

I was first diagnoised December 2012 with Aggressive B Cell. 6 Chop plus 2 more, still in the bone marrow in one leg. December 2014 diagnoised with Marginal Zone. I had 6 Rituxin treatments weekly, than 1 every other month or 12 months. Clear PET in March and September. Next PET in March.

[Calipewings_2016 in reply to dbalthrop]

Thank you for your post.

[BagEPuss]

Hi, Seems not that many of us with MZL! I am a 52 year old male, and was 49 when first diagnosed with Stage 2 MZL in Oct 2013, after a 14cm tumour in my lung lining showed up on a random chest X-ray at hospital. I had been suffering palpitations, my GP's surgery was about to close and they advised me to go to A&E to check myself out. The doctor on duty was ambivalent about the need for an X-ray, but took one anyhow. Without that I might not have been diagnosed as I had no symptoms whatsoever (despite probably having had it for years).

I was immediately put onto a 6x R-CVP chemo regime, which achieved a very good partial remission (80-90% reduction) and was then watch and wait for a year. The chemo was fairly easy to handle, some fatigue but no hair loss.

A follow-up PET scan showed progression, into the area close to my heart, and also showed lesions near my kidneys making it Stage 3 at least.

Treatment severity then swung right over, and I began 3x cycles R-DHAP in Nov 2015 which is more commonly used for the aggressive types of NHL. This was tougher, I started to lose hair, developed permanent tinnitus, but the nausea was well managed. The target was to achieve a complete response on the PET scan, in preparation for a stem cell transplant, but I was was borderline. This was probably the biggest moment of crisis as I didn't have a Plan B.

Nevertheless, I was still assessed to be chemo-sensitive, and a view was taken that the conditioning chemo regime used for stem cell harvest (etoposide) would get me over the line. I had my autologous stem cell transplant programme in March. This was arduous, but not anything I couldn't handle, and in May I achieved an unequivocal "complete metabolic response" which is everything I could hoped for. Now on 2 year's Rituximab maintenance.

So, huge ups and downs, an unusually aggressive treatment for NZL but I am (for now) cancer-free.

I hope this gives you some cause for optimism and hope, as that is what I needed for myself and my family to get us through.

Please keep posting (thus is my first post on here), and very best wishes for your treatment.

[Calipewings_2016 in reply to BagEPuss]

Thank you for your post. I started having symptoms in July that were only getting worse. I finely requested a biopsy be done

on a swollen lymph node in my neck however before I received the results I ended up being admitted to the hospital. I was there for 4 days and was diagnosed with thrombosis (blood clots in both Kidneys and spleen). Now I'm on blood thinners.

[Railmaster]

Hi

I am 59 and was first diagnosed with CLL in 2007, yet, enjoy good health and have never required treatment .

But, a year ago, I presented with a 'red eye'.

Following biopsy, it was confirmed as a conjunctival lymphoma (MALT), comprising mixed phenotype marginal zone lymphoma (MZL) and chronic lymphocytic leukaemia cells (CLL).

I am currently treated with interferon eye drops for the MALToma. From a general haematology standpoint I remain well and my blood results show no cause for concern.

I appreciate it is rare, but, I would be very interested to hear from anyone else who has both systemic CLL and a conjunctival MALToma or indeed any further information.

I often wonder how many of us have more than one type of Lymphoma or Leukaemia.

[Calipewings_2016 in reply to Railmaster]

Thank you for your post.

[Tatjana]

Hi Calipewings, I was diagnosed with Extra Nodal Marginal Zone Lymphoma of the liver in October 2012. This was Non Hodgkins. I had operation to remove one third of my liver in January 2013. Yes, I was told it was one of the better cancers to have but it is very rare.

[Calipewings_2016 in reply to Tatjana]

My doctor believes that the type I have is nodal although I have a few more tests to run this week. How are you doing since your surgery?

[Tatjana]

I think or rather hope I am ok. I got Hepatitis C through a blood transfusion one week after giving birth in 1973. Found out in 1991 about it. Then a mass (Lymphoma) was found on my liver in October/November 2012. The consultant let me have Christmas with my family. Operation 4th January 2013. Cured of Hep C (treatment horrible) January this year. I think or hope I am ok. Good luck with your tests.

[Calipewings_2016 in reply to Tatjana]

Thank you. I'm hoping to get my results tomorrow.

What did they do in your operation?

[Calipewings_2016 in reply to Calipewings_2016]

Sorry, still figuring out how to read & respond to posts. I just saw that you had the op. to remove part of your liver. How tough was the surgery on you?

[Tatjana in reply to Calipewings_2016]

Removed a third of my liver.

[Tatjana in reply to Tatjana]

Not as tough as what I am going through now. My husband is having operation at this very minute.

[Calipewings_2016 in reply to Tatjana]

I'm sorry to hear that. What is your husband having? I hope it's nothing to serious.

[Tatjana in reply to Calipewings_2016]

Not serious. Knee replacement and he is ok thanks.

[Felix_2010]

Hi Calipewings

I have extra nodal Marginal Zone NHL diagnosed at the beginning of October . My Haematologist told me it's very rare but I'm fortunate that it is low grade and treatable . I started 8 cycles of chemo - R-CVP - on 18th November following bone marrow biopsy and CT scans .

I'm feeling great - better than before the chemo . I have already noticed an improvement in my lymphoma symptoms even after one cycle , which gives me hope for next time . For me, the key is keeping healthy - exercising when I can and eating a balanced diet when I can . The steroid part of the treatment does make me want to eat everything in the house though , lol!

Good luck with everything xx

[Calipewings_2016 in reply to Felix_2010]

I'm happy you are feeling better. What kind of symptoms were you having?

Please keep us updated on how your treatment goes. I should find out more about my Marginal Zone & my treatment plan today.

[Felix_2010 in reply to Calipewings_2016]

Hi again . My symptoms were feeling tired, coming down with something all the time , then 2 years ago I found a lump on my torso and was told it was a cyst . It got bigger so I had it removed in September then was diagnosed . There's no sign of lymphoma in my blood so I am lucky it was spotted . I've come up with a lot more lumps - these have grown outside the lymphatic system , hence the extra nodal . I have widespread tumours internally plus some at the tops of my legs, but they're shrinking already .

[Carolgruber1]

I just got diagnosed with the same. Having third retuxin tomorrow...1x a week for a month then decreasing infusions. I found huge

Axiallary lymph nodes... Gone after two infusions ..feeling better already.

[Calipewings_2016 in reply to Carolgruber1]

Hi Carol. I'm happy your feeling better.

Please keep us updated on your doing....

[Carolgruber1 in reply to Calipewings_2016]

Thank you. Finished 4 rounds of weekly retuxin. For marginal zone .. axillary nodes way down. Ct next.. then begin retuxin again. My concern is mediastial node involvement with shortness of breath. Do they actually remove nodes if not responding?

[laylalulu]

I too have the same as you. Two years on watch and wait after my spleen was removed. I am 55 yr female . I had the bone marrow biopsy but not a petscan yet. Good luck to you

[laylalulu]

Thinking of you hoping your bone marrow biopsy and scans went well. Did you mind the bone marrow biopsy? I found it pretty uncomfortable but bearable. Good luck with your results. My Marrow was 50% involved and I'm doing well 2 years later hang in there!

[Calipewings_2016]

Hi Laylalulu. My BM biopsy came back fine however the scan showed that my cancer has spread to my pelvic region. The doctor diagnosed me with stage III and I start my Chemo and Rituxan treatment next week. Thank you for thinking of me...

[laylalulu in reply to Calipewings_2016]

I feel a lot of positive stories come out of this site. There's a site I'm on lymphoma club, not sure if you've heard of it? Anyway again a great deal of stories about people surviving a long time with this cancer. It gives me hope. I hope and pray your chemo goes well for you. Everyone reacts different to it. We will pray yours goes without any side effects. Take care and good luck, you got this!

[Calipewings_2016]

Hi. I've now had 3 out of 6 cycles of treatment for my Nodal Marginal Zone NHL. I'm feeling much better and I don't believe that I no longer have any swollen lymph nodes. I hope you all are doing well with your treatments...

[gardenFAIRY]

I was diagnosed with marginal zone lymphoma in October 2018. I had 12 radiation treatments I have a pet scan scheduled for 2/23/19. I have previous history of Diffuse large b cell lymphoma which was initially treated with RCHOP, and then when it relapsed I had a stem cell transplant.