ALK+ ALCL Recurrence (Anaplastic Large Cell Lymphoma)

cassiek
cassiek Member Posts: 3
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi,

i just thought I would start a new thread in case anyone had any similar experiences. I was diagnosed with ALK+ ALCL in 2002 (Stage 2, age 17), and I did a full year of chemo that had similar drugs to CHOP but no Cytoxan and with Methotrexate and 6MP added to it.  I have been in remission for 12 years until this March, when I had a lesion on my right arm that turned out to be the exact same cancer.  We don't have my old tumor to compare it to because they threw it away after 10 years, but based on the pathology report, it looks exactly the same.  It was weird because last time I didn't have any cutaneous expression of the lmyphoma, but this time that was the only thing I had.  We struggled for a long time with what to do, seeing specialists all over the place, but after the surgery to remove it, I had a lymph node right nearby swell and then go down about a week later to where I couldn't even feel it anymore.  I was all set to do Radiation to just hope that would take care of it, but we did a skinny needle biopsy on the nearby node to just double check and it came back positive.  So now my plan is to do 4 Cycles of CHOP with consolidative radiation.  We're also maybe considering doing Crizotinib maintenance but not sure because no one is positive about the toxicty, and we're just hoping that the CHOP and radiation will take care of everything.  I was just curious if anyone else out there had such a late recurrence of ALK+ ALCL after chemo, and if so, what treatment did you do? Also, I'm wondering if anyone else out there had done just Brentuximab for ALK+ ALCL without a SCT or Brentuximab and then Crizotinib maintenance with no chemo and what kind of results you had? Thanks so much, and I hope everyone is doing as well as possible. :)

-Cassie

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    ALCL

    Cassie,

    Like all T-cell based lymphomas, your disease is rare. Most T-cell discussions get few responses, not from lack of concern, but from lack of familiarity.  The two older threads that you recently posted on had not had activity for a few years, for instance.

    The following article discusses ALK-ALCL, and has a section on "Investigational Medicines."  I could not find a DATE of publication for the article, so I have no idea how old it is. Note that several links are mentioned in "Resources," as well as some 800 numbers.

    http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300143

     

    Crizotinib:  http://chemocare.com/chemotherapy/drug-info/crizotinib.aspx  

    (It appears in this article that Crizotinib is effective only in tumors that remain ALK positive, so I would ask the doc if that has to be re-verified.)

     

    Brentuximas:  http://chemocare.com/chemotherapy/drug-info/brentuximab-vedotin.aspx

     

    Wishing you wellness and treatment success. You seem well-read; you will figure this thing out.

    max

     

     

  • jorge8157
    jorge8157 Member Posts: 1
    #3
    Alcl recurrence

    MY daughter had ALCL ALK+ in 2009 and  after CHOP she was in remission for 4/12 years. The lymphoma came back in 2013 and The doctor suggested Brentuximab  Vedotin . this medication reduced the tumors to the point where it seemed that she was going to go into remission but  it stopped working and the tumor started growing again. He then suggested a SCT which my daughter refused. We tried natural medicine and that help but the tumor kept an growing. We had asked the doctor for Crizotinib right after brentuximab but he felt that it woul not be a permanent solution but the SCT was not guarantee to work either. The tumor grew from from 1.2x1.3 cm to 14x14cm and she became very sick. The doctor agree to give her the crozitinib but the insurance did not wanted to pay for it because it has not been approved for ALCL. We managed to get the medication. She stared taking it an wednesday and by sunday of the same week she had no symtoms. We could not belive  how quikly this medicine worked. It was like a miracle.The side effects compare to any other medication she has tried were negligent. No hair lose ,no neuropathy , she never felt sick. compare to brentiximab it was like a walk in the park. The only sympton she had was sometimes she would have double vision if she turn her head to quikly but after a while it got better. Knowing what i known now, Crizotinib right after bremtuximab would have save my daughter a lot of grief.I must say that both times the lymphoma was sytemic in nature never curtenous. She is currently in remission and doing well. She also joined a clinical for car t-cells.We are hoping the car t cells will act as protective shield against possible future recurrences. We wish you the best and if you have any question dont hesitate in reaching out to me.

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