Marginal Zone Lymphoma, how long has been since your diagnosis?

In January 2008 I haven diagnosed with B-cell Lymph proliferative disorder suggestive of indolent Marginal Zone Lymphoma (MZL). This was a result of high white blood count in the absence of infections disease of any kind like H Pylori and viruses like Hepatitis A, B&C. Extensive blood studies including Zap70, flow cytometery and gene markers reaffirmed the finding of MZL.

I have been told that there is no cure for lymphoma. But it’s manageable with medications, meaning we will do some thing about it.

At this time I am Stage VI-A meaning last stage asymptomatic.  I understand that if lucky I may live for ten years. Today July 1, 2009 18 months since the diagnosis, PET/CT scan show slightly enlarged lymph nodes at both sides of the neck and a slightly enlarged spleen but other wise I feel great. I run three marathons a year and continuing to do so.

The approach now is get tested every three month, so far there is no need for treatment.

I have accepted it, learned to enjoy every day as if it is the last day of my life. I have not told my two teen age daughters yet and my mother; I will tell them just before I start therapy. I know they will be devastated when they find out.

I would like to know if there are any MZL survivors out there, for how long and what treatment have they done.

Trooper

On 7/1/2009 Trooper8 wrote:

In January 2008 I haven diagnosed with B-cell Lymph proliferative disorder suggestive of indolent Marginal Zone Lymphoma (MZL). This was a result of high white blood count in the absence of infections disease of any kind like H Pylori and viruses like Hepatitis A, B&C. Extensive blood studies including Zap70, flow cytometery and gene markers reaffirmed the finding of MZL.

 

I have been told that there is no cure for lymphoma. But it’s manageable with medications, meaning we will do some thing about it.

 

 

At this time I am Stage VI-A meaning last stage asymptomatic.  I understand that if lucky I may live for ten years. Today July 1, 2009 18 months since the diagnosis, PET/CT scan show slightly enlarged lymph nodes at both sides of the neck and a slightly enlarged spleen but other wise I feel great. I run three marathons a year and continuing to do so.

 

The approach now is get tested every three month, so far there is no need for treatment.

 

I have accepted it, learned to enjoy every day as if it is the last day of my life. I have not told my two teen age daughters yet and my mother; I will tell them just before I start therapy. I know they will be devastated when they find out.

 

I would like to know if there are any MZL survivors out there, for how long and what treatment have they done.

Trooper

I have Marginal B zone lymphoma.....so I know how you feel. I was dx on 11 of February 2001. I was devastated and my oncologist was not the best at the time.I since changed to a very nice lady onc. I did have my spleen taken out since it was very large and that has helped out a lot. I have a bone marrow biopsy done every other yr and a pet scan done too. So far I am on w/w...and just take a day at a time. I have 2 children one is 16 and the other is 17 and they know I have cancer but I don't think they understand it. I tell them  that stress is the worst thing for any cancer...but that only lasts a bit. I was told that this is the best cancer to have and I only found out about it because I was always very tired and they finally did a bone marrow. I had hemolitic anemia also.

I hope we can keep in touch because it is very hard to find someone who has the same thing.

Good luck to you.

Laura

On 7/23/2009 laurita wrote:

 

On 7/1/2009 Trooper8 wrote:

In January 2008 I haven diagnosed with B-cell Lymph proliferative disorder suggestive of indolent Marginal Zone Lymphoma (MZL). This was a result of high white blood count in the absence of infections disease of any kind like H Pylori and viruses like Hepatitis A, B&C. Extensive blood studies including Zap70, flow cytometery and gene markers reaffirmed the finding of MZL.

 

I have been told that there is no cure for lymphoma. But it’s manageable with medications, meaning we will do some thing about it.

 

 

At this time I am Stage VI-A meaning last stage asymptomatic.  I understand that if lucky I may live for ten years. Today July 1, 2009 18 months since the diagnosis, PET/CT scan show slightly enlarged lymph nodes at both sides of the neck and a slightly enlarged spleen but other wise I feel great. I run three marathons a year and continuing to do so.

 

The approach now is get tested every three month, so far there is no need for treatment.

 

I have accepted it, learned to enjoy every day as if it is the last day of my life. I have not told my two teen age daughters yet and my mother; I will tell them just before I start therapy. I know they will be devastated when they find out.

 

I would like to know if there are any MZL survivors out there, for how long and what treatment have they done.

Trooper

 

I have Marginal B zone lymphoma.....so I know how you feel. I was dx on 11 of February 2001. I was devastated and my oncologist was not the best at the time.I since changed to a very nice lady onc. I did have my spleen taken out since it was very large and that has helped out a lot. I have a bone marrow biopsy done every other yr and a pet scan done too. So far I am on w/w...and just take a day at a time. I have 2 children one is 16 and the other is 17 and they know I have cancer but I don't think they understand it. I tell them  that stress is the worst thing for any cancer...but that only lasts a bit. I was told that this is the best cancer to have and I only found out about it because I was always very tired and they finally did a bone marrow. I had hemolitic anemia also.

I hope we can keep in touch because it is very hard to find someone who has the same thing.

Good luck to you.

Laura

Oh thank you so much for sharing your information with me, I am so happy to hear that you are doing well. Please keep up the good out look on life, it is half the battle.

My under standing of cancer, the type you and I have is that one or two defective blood cells lost the ability to communcate with healthy cell and keep mutiplying.

With repect to your teens, at that age the world revolves around them, meaning they are more concrened about them self than any one else.

My two teen daughters now 20 and 22 love me a lot more than they were 16&18.

Thanks again for sharing and I will keep in touch 

Trooper

I wish I had joined this board months ago!

 WOW, there are more people than just me with this darn disease!! I was diagnosed in 2/15/2003, a date I will never forget.  I have had my spleen removed, 4 rounds of Rituxin and 10, yes, that is 10 PET SCANS.  I just found out, after a 2 1/2 yr remisison, that I have hot spots in my neck.  Actually, I did know it was getting ready to pop its ugly little head since I have started with night sweats, fever and incredible fatigue for approx. 3 mos. now.

If you are still active on this board I will be happy to tell you what I have gone thru, the bad, and the GOOD!!!  Good Luck, God Bless.

Debi

It seems like you are on your way to recovery and sounds like you have a good sense of your treatments. Hang in there, as I understand it, new medical treatments are around the corners.

Have you tried any dietary treatments like eating specific foods such as asparagus, green mustard leaves, does this help or is this a myth?

I would love to hear from you about all the good things, and not so good in your journey. Please do not be afraid to tell it all. I am all ears, and keep in mind that there are a lot of disparate people who want to here you story as well.  

Trooper,

First of all, people do in fact live with marginal zone lymphoma.  It can be a very manageable desease.  I was first diagnosed in October, 1998 with Stage 4A non-hodgkins lymphoma.  That has almost been 10 years now but I began to have some of the same symptoms that I had back then and went to the Moffitt Cancer Center in Tampa, Florida for a followup.  A PET scan showed a large white spot on my right proximal femur along with some other spots.  An followup MRI showed that my bone marrow appeared to uniformly dark in both femurs of my legs.  After a very painful biopsy of the right femur, the results came back as marginal zone lymphoma.  In fact, according to the pathological results, the mass was 95% turmor. 

This has been within the past week and don't have an appointment with the lymphoma specialist as of yet.  I will know more then as to what stage it might be in and/or what the plan of treatment might be.  My blood counts are all low but just outside the lower range of what is considered normal. 

I expect another period of remission followed by another episode of cancer...it's just part of the human condition.  Whatever you do, don't give up, don't worry because it will not change the outcome and by all means talk about this with others....your pastor, your spouse, children, and others who have gone thru it.  It's not an easy process to go thru but it is very surviveable.  Get plenty of rest, eat good quality food and keep a very positive attitude.  And trust me, if God can create the universe out of nothing by speaking it into existence, he can most assuredly provide you a way out of or thru this desease.

Best wishes,

Michael

Thank you so much for the support.

I wish you the very best, I thanks you for sharing your information with me. I will keep you informed with my condition, and plaese keep in touch

On Aug 24, 2009 12:00 AM Trooper8 wrote:

Thank you so much for the support.

I wish you the very best, I thanks you for sharing your information with me. I will keep you informed with my condition, and plaese keep in touch

How is everyone doing now? I have been diagnosed recently. SIssy