The Leukemia & Lymphoma Society - Fighting Blood Cancers
12 Replies Latest reply: Nov 20, 2011 6:51 PM by TScottG RSS

Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment

pauls Registered Users
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Grettings All,

 

Hi to some old friends, good to see your names. Sorry I haven't been contributing like you, I should have been. Now, 3.5 years later I'm backing looking for your advice. Quick story: diagnosed SMZL Jan. 2006, underwent 8 weeks RCHOP, kept my spleen, finished 24 mo. Rituxan, spleen returned to normal and I feel good.

 

Except, last week's CT scan show my spleen enlarged by 1cm. Not much. WBC is a tad under normal, barely. Feel fine, except this new stress. Dr. said to do nothing as I'm "stable." I'm not so sure. What am I waiting for? But what are my options?

 

So, I'm curious to hear what you do when the first signs of a relapse become apparent. Wait to feel worse? Remove the spleen this time? Try a new chemo? Look into stem cell transplant?

 

Yikes, help a brother out. Thanks in advance. Happy sailing ... _/) Paul S.

  • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
    TeresaB. Registered Users
    Currently Being Moderated

    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??

    • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
      pauls Registered Users
      Currently Being Moderated

      Hi Teresa,

       

      Thanks for the words. I think I'm not going to settle for "stable" and try to get into Mayo Clinic for more testing. Though it would be key for me to know why a DR would wait for treatment with signs of relapse?

       

      Get well. Stay well.

       

      Paul

    • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
      pauls Registered Users
      Currently Being Moderated

      Teresa, and your point is good. Can't trust CT and bloodwork alone. Need to trust your own feelings, and a PET scan tells a better story. I'm thinking my DR didn't request this because of $$$.

       

      Does anyone know, can you make your DR request a PET. I'd feel better. Plus, I'm not sure if they can tell if it's back in the bone marrow with a CT/blood work alone?

       

      Paul

      • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
        Eva Registered Users
        Currently Being Moderated

        Paul,

         

        Waiting with SMZL is common, the technical term is actually called "Watch and Wait" (don't you love it when the technical terms are in ENGLISH!)  . . .  Why? well, I'm no expert, but what they told me at Mayo when I was there this spring for my diagnosis, is that SMZL is incurable. The treatments only settle things down to a more manageable, more comfortable situation. They don't work as well the more times they use them. So they delay using them until your symptoms are bothering you a lot. Not sure that taking the spleen out will actually help anything . . . because if all the extra b-cells your body starts producing end up there, won't they end up somewhere else? I'm not a doctor, but I'd ask about this. A lot of mine ended up in my bone marrow. (which meant my RBC went down and I felt really weak.)  And I think that is the real diagnostic with this disease . . . the bone marrow biopsy shows a lot. I had a PET scan, but they do cost about $5K and insurance is tricky about when they cover it. I also think that there is some controversy about just what and how much the PET scan actually can show. I'm not an expert, just a fellow traveler on the journey.

        So, go off to Mayo and see what they say. I saw Dr. Johnston and really liked him.

        • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
          ryeenda Registered Users
          Currently Being Moderated

          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.

          • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
            pauls Registered Users
            Currently Being Moderated

            Hi Robyn,

             

            From your post, it's unclear to me if you've had ANY treatment up to this point? Or, have you been on a watch and wait the whole time?

             

            Plus, you may want to add some more details re: age, physical condition, etc., as some of the symptoms may be tied to those factors and not just SMZL.

             

            Take care.

             

            Paul

          • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
            markf Registered Users
            Currently Being Moderated

            Robyn,


            I was diagnosed with SMZL in January, 2002.  I was on watch and wait for about a year.  My anemia began to worsen, so I decided to start treatment.  I had 4 cycles of rituxan first, followed by 4 cycles of RF (rituxan and fludarabine.).  I completed treatment 5 1/2 years ago and there is no sign of any relapse.  You can read about my experiences in the non-Hodgkins forum under Rituxan/Fludarabine Treatment (RF) for Treatment of Indolent Lymphoma.  The bottom line is that I feel completely normal at this point with no after effects.  If you want to pose more questions about this, you should do so in the non-Hodgkins forum.


            Mark

  • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
    markf Registered Users
    Currently Being Moderated

    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

    • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
      pauls Registered Users
      Currently Being Moderated

      Mark, thanks for the input. You've always had great comments and I really appreciate your opinion because you've "been there done that."

       

      I'm not sure you remember, but you provided with great info in 2006, mainly about keeping the spleen.

       

      Glad to hear you're doing well. I'm feeling good myself, but you know, there's always a little lurking going on in the back of the mind.

       

      And, oh, NO, no other enlarged lymph nodes. I do believe my spleen has grown though as I feel a bit fuller than a few years ago. One thing I learned from all this is to pay more attention to my body -- how I'm feeling.

       

      Paul

      • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
        markf Registered Users
        Currently Being Moderated

        Paul,


        I remember your name, but not what I said to you.  We all have fears in the back of our heads about a recurrence.  That's why I would wait for more objective information than feelings like those you are experiencing.  I'm not sure if you would even feel a 1 cm increase in your spleen size.  In my case, I suddenly panicked when I noticed that the left side of my belly (where the spleen is) was a little larger than the right side.  That was several years ago, and wasn't confirmed by CT scans.  As long as you feel well, that's what counts.


        Mark

  • Re: Seeking input from Lymphoma patients (SMZL) regarding relapse and treatment
    TScottG Registered Users
    Currently Being Moderated

    Greetings pauls and other names I recognize like Eva and markf:  I have been off the boards for awhile, probably two years or more.  Just a quick recap of my situation. In July 2008 I was diagnosed with SMZL.  My spleen was removed August 23rd, 15 lbs.(?!?) all tumor.  Seven other tumor in lymph nodes ranging from dime to quarter size.  Rituxan given in 4 doses in October after recovering from surgery.  Watch and wait since.  The huge spleen caused a ventral hernia which the surgeon said we could fix later.  Well, its later and once a week the hernia gives me pain when I roll over at night, so I decided to see a surgeon to discuss fixing it.  I had an abdominal and pelvic CT at 11:00, in advance of seeing my Oncologist on Monday, and saw the surgeon at 2:00 last Thursday.  I mentioned to his nurse that I at the CT and she said he would look at at it before coming into the room to get an idea of what needs to be done.  He comes in and we are discussing the procedure when I say that I would like to do it right after Christmas as my work level drops off after the holidays for about a month.  He says " I don't think you will want to do it so soon, if you are going be on Chemo. it would make recovering from the surgery more difficult"  I asked what he was talking about.  He thought I had already seen my Oncologist right after my CT and assumed I knew.  One of my nodes in my chest has changed from .8 cm to 2.1 cm between CT's and he was concerned that my SMZL had returned and that I would soon be back on Rituxan.  I guess I find out for sure tomoorow.  I always knew it would come back, but I was under the impression that as indolent as it is, it would take longer.  Having not talked to my doctor yet, I am just assuming, but we will see tomorrow.

    T. Scott

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