I feel your pain.  I'm not familiar with SMZL, I'm Non Hodgkins.

I too feel bad about not contributing here for a while, the support and encouragement is wonderful.  I wanted to "distance" myself from the "c" word so much I guess.

I went into remission in November last year.  Now, have a hard, painless lump that appeared overnight.....had a PET scan today.  If there are any hot spots:  first a biopsy, and if it's relapsed, stem cell transplant.  No other choices for me.

The only thing I have to offer is that the first of this month my regular CAT scan was done, but only chest and abdomen.  I questioned the wisdom of this but went along with it.  Just last week a large, painless lump appeared on my NECK overnight.  I was rushed into blood work, and PET scan to look for hot spots.  Waiting for the results of course is the pits.  I also wanted to add that my bloodwork NEVER looked odd, not at any point before lymphoma was discovered or since.  So, I guess I'm saying I don't trust bloodwork and CAT scans completely.  (I was a StageIV (b) before I ever got a diagnosis the first time!)

I'm sure someone else with have more for you, but I'm guessing "stable" is good??

Hi.

   I was dias in May 2008 with smzl. I have blood tests every 6 months.I am not on medication.{ just waiting} My spleen is enlarged. I am very tired all the time.

   I do not know what to expect in the future. Could some one please help me.

                                                                                                              Thanks.

Paul,

I'm also not that sure that a small increase in your spleen is indicative that the SMZL has returned.  I don't know how consistent the CT scans are since it may be due to a slightly different position.  Did the CT scan show any enlarged lymph nodes?  In SMZL, changes in your blood work don't show up until the SMZL is much further advanced.  In any case, even if it has returned, I would think that you would be back on Watch and Wait since they like to save the big guns for when you really need it, and chemotherapy tends to become less effective with every use.  You could request a bone marrow biopsy since SMZL has almost always showed up in the bone marrow at first diagnosis.  One reason that oncologists are reluctant to do PET scans is that they involve radioactivity, and there is a small chance of this causing new cancers.  I wouldn't get too worried at this point since SMZL advances very slowly even if it has come back.  I am sure that it would be years before it became a problem again.

Mark