The Leukemia & Lymphoma Society - Fighting Blood Cancers
10 Replies Latest reply: Jan 6, 2012 11:22 AM by Anastasia RSS

Splenic Marginal Zone Lymphoma/Hepatitis C

Anastasia Registered Users
Currently Being Moderated

My husband has been diagnosed with SMZL stage 3/4 and has Hep. C . Has anyone eles had this combo. I know they are related in some of the studies I have read. We go to a new Hepatologist tomorrow.

Also should we get a second opinion before any type of treatment?. Oncologist and Hepatologist will be working together.

I am in NJ/NYC area so any doctor recommendations and experiences welcomed. So hard to be in this limbo state. Good news DH still feels well and is fishing in a tournament Saturday.

  • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
    jvanostrand Registered Users
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    Hi Anastasia,

     

    I can't comment on the complications of Hep c and SMZL. But I can help you out a little. I was diagnosed with SMZL in May 2010 after finding I had a freakishly large spleen. I was successfully treated using CVP-R chemotherapy which shrunk my spleen back to normal size in 3 weeks. My spleen was the size of a ream of copy paper so it was surprising that it happened so fast. I've been in remission ever since and all things point to normal, for now.

     

    There are two things you can get a second opinion on. First your husband would have had a blood test, bone marrow biopsy/aspiration or perhaps a splenectomy or some other biopsy. This investigative work was done by a pathologist whom you may not have ever met. He works in a lab and does tests on the samples looking for evidence of disease. This person is probably the one who called it SMZL first but likely deferred the final decision to your doctor, who had more information about you. I think in most cases your doctor just rubber stamps the diagnosis and then decides on how to treat.

     

    So you have to decide, is it the pathology you want re-done, the doctor's rubber stamp on the diagnosis, or do you want another opinion on the treatment?

     

    You may know by now if the disease is indolent (slow growing) or aggressive. There's a good chance it's indolent and that you have lots of time to decide how to proceed. In fact if your husband's spleen is not huge, the treatment may actually be watch and wait, which is to say do nothing but monitor it every 3 months or so. I know one person with SMZL that has been on watch and wait now for 1 year.

     

    You may be overwhelmed with the diagnosis and starting treatment would give you a good feeling that something is being done. This is how I felt so I didn't want to wait for additional lab work, or wait for a visit with another haematologist. I asked my family doctor and did some research on the haematologist, which I thought was due diligence. I also asked her whether this treatment was very normal, if she had difficulty coming to this diagnosis or if the decision was straight forward. My family doctor said she would trust her with her childen if they had cancer. And the haematologist said that my diagnosis was straightforward and that the treatment was well established. All this gave me a comfort level that I had done the due diligence.

     

    You should also know that I live in Canada and we tend to feel that our doctors generally perform well and about the same as each other. Our culture seems to be that we don't automatically seek out second opinions, or at least not as much as seems to happen in the US.

     

    I do know that you should be careful. Are you seeking out a second opinion just to get a treatment option that you want? If so isn't that you doing the diagnosis and just finding a doctor that will agree? Are you uncomfortable with the style of this doctor? That's perhaps the best reason to switch. Or are you looking for a doctor that can say he can cure you, because that would be overconfidence (or unethical) since SMZL is considered incurable.

    • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
      jvanostrand Registered Users
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      I should also mention that stage 4 is common with SMZL and doesn't seem as severe as other lymphomas that are in stage 4. It's that stage because both the spleen and bone marrow are involved, not because it has jumped from node to node to node.

      • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
        Anastasia Registered Users
        Currently Being Moderated

        Thank you for the reply. We went to hepatologist who conferenced with our hem/oncologist. They decided on the CHOP treatment then the HCV treatment. We know the SMZL is chronic and hoping with the new Hep-C medicine DH can become HCV free. I am confident with these 2 doctors now and hope treatment will start in Oct.

  • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
    abramsmm Registered Users
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    I have heard that treating Hep-C in patients that have both conditions can help quiet down the SMZL.

     

    Absolutely get a second opinion-- there are as many opinions on treatment for SMZL (or any indolent B-Cell lymphoma) as there are doctors.

     

    In the NYC area-- Weill-Cornell NY Presby (John Leonard or Richard Furman).  In NJ- Andre Goy at Hackensack Med Ctr.

    • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
      Anastasia Registered Users
      Currently Being Moderated

      So ... Dh's hem/onc has a family emergency and we had appointment canceled this week. I made an appointment for a second opinion at Sloan Kettering in NJ . Their policy is that they will not do a consult if treatment is started with another doctor -- is this always the case?  This is so frustrating. The next appointment is Nov.8.

      • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
        abramsmm Registered Users
        Currently Being Moderated

        I have not dealt with Memorial-Sloan but I have run into a variety of regulations, such as inability to change from original doc at the larger cancer centers, inability to transfer in from a different hematologist (as you mentioned- I've heard of this at UCLA also), large fees for second opinions (be careful at Memorial-Sloan and some others), being forced to see the doc one specific morning a week when the fellow is available to follow the case, etc. etc.

         

        Here is what I have figured out:

         

        - Don't speak with the main number of the cancer center, call specifically for the office of the doctor you want to see, anywhere.

        - I wouldn't call a hospital and ask to be sent to someone familiar with your condition.  The secretary does not understand the different types of NHL, especially the less common ones.  Do your own research first online, or from someone else's positive feedback, then say you want an appt to see Dr.------. You may be able to do this request online where little explanation is needed.

        - Doctors are competitive and want to build patient base, even in educational/salaried environments. Their office controls the appointment book to that end. 

        - Don't ask a doc or his/her office to send you to another; instead-

        - Call the office of the doc you want to see directly

        - It's your choice as to how much to reveal about purpose of your visit, be it opinion, guidance for your local doc (who may not be receptive), transfering care, etc.

        - It is much easier to get 2nd opinions than to get your local doctor to use that opinion in treating you, even if the opinion is from MD Anderson, Mayo Clinic, etc.

        - Some centers will do remote pathological 2nd opinions for people who are not local (Dana-Farber and Cleveland Clinic come to mind).

         

        ** Most important to your question- the hospital will work with you if you give them an answer they can accept.  They do not have time to research the facts.  If you said that you just moved to the area, how could they deny you continuation of treatment?  Would they make you go back to a hem/onc several states away?  Very doubtful. I hate playing this game, but our access to care is most important, and should not be a battle.

         

        ** If Memorial-Sloan is doing a pathological 2nd opinion, looking at your slides (e.g. BMB) by either an individual doctor or a tumor board (you might be able to request this), be sure you know what the costs will be, when/how it's due, and if your insurance will cover it.

        • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
          Anastasia Registered Users
          Currently Being Moderated

          Thank you for such a quick response. I called my insurance company first then MSK for Dr. Audrey Hamilton to do the second opinion consultation. It is 2 hours away from us. They will use the labs and CT scan we have. That was so nonsensical about treatment being started. DH changed Hepatologist without a problem. I know this is big business. thanks again.

          • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
            kandco Registered Users
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            I'm not 100 percent sure, but I think when Sloan Kettering says they won't take a new patient in treatment, they are referencing chemo, radiation, etc - the actual treatment.

            • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
              Anastasia Registered Users
              Currently Being Moderated

              Yes if you are in treatment they will not step in. We went to first consult and treated well and very impressed. The place is over whelming. Go back in a week for diagnosis and treatment plan. She is leading toward treating HCV first. The drive was not so bad so that was good.

              Thoughts with you all.

              • Re: Splenic Marginal Zone Lymphoma/Hepatitis C
                Anastasia Registered Users
                Currently Being Moderated

                Hi just an update we are still on watch and wait. WBC went up again after going back down. I now see my DH getting tired and stressed out. More night sweats just drenching. The holidays did not help. Next week they should decide on a plan after more blood work.

                Hope you all had a great holiday with friends and 2012 finds everybody healthy.

                Thoughts with you all.

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