Some advice - Follicular Lymphoma as Second Cancer

Mary1864
Mary1864 Member Posts: 39
in Lymphoma (Hodgkin and Non-Hodgkin) #1

I have been a member and on the Colorectal forum.  Diagnosed Feb 2015 with Stage 3A.  Had surgery, Folfox and radiation treatment and reversal of an ileostomy and finished June 2016.  Since then had clean CEA bloodwork and positive follow-up appointments. 

Noticed in Sept 2017, swelling in the corner of my left eye.  Short version, 4 doctors and one year later, was diagnosed with follicular lymphoma.  Had the classic salmon patch growth in eye.  Aug 2018 had a biopsy at Wills Eye and got the news.

I am in limbo waiting for insurance approval for a PET scan to see if it is elsewhere.  

Cancer number two.  I am not sure what to expect from this.  I hear indolent, slow growing...

I feel hopeless when thinking about dealing with two cancers at the same time and don't know how to deal with this.

Any advice, wisdom about lymphoma treatments?

 

Comments

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

    Welcome to you , Mary.

    We have LOTS of relapsed lymphoma members here, but people with two unrelated cancers is rare. Mostly just me and you (I had Stage II prostate after C.R. from lymphoma). Getting a second form of cancer is NOT relapse, of course.

    Lymphoma in the eye (Ocular) is virtually always a form of non-Hodgkin's (yes, Follicular) that has CNS (central nervous system) involvement.  Treatments usually include conventional Follicular combinations, plus administration into the spinal fluid.  This is sometimes dirctly into mid-spine, or sometimes into a tiny pouce installed in the base of the skull (upper neck).

    Follicular is almost always very controllable, even after relapses.  Ocular complicates things, but it also is usually very controllable, usually very long term.  And yes, Follicular is very indolent.  My form of Hodgkin' s is also very indolent, and these are regarded as technically incurable, but most pateints never see relapse after complete remission. Statistically we are more prone to relapse than people cured of aggressive lymphomas, but if I never see mine again, I don't care if it was a disease defined as "incurable."

    We have a number of members now active who are getting or have received CNS treatments.

    Very generally, your colorectal is probably a much more serious matter than the Follicular.  Organ cancers are nearly always worse affairs than lymphomas.  I do not say that to be optimistic or pessimistic, it is just the way it is.

    Knowledge is power, but at times I wish for blissful ignorance.

    max

  • Mary1864
    Mary1864 Member Posts: 39
    #3
    Thank you!

    Max,

    Thank you for the information.  Yes, I have been researching and come to the conclusion that this two primary cancer scenario (adenocarcinoma, follicular lymphoma) is not common.    Follicular cancer presenting in the eye is also rare.  Guess this just makes us special!!  I think what I worry most about is how/if I will manage with two cancers to fight.  I have the experience already of what chemo and radiation/chemo therapies feel like.  

    Your information was very helpful..It steered me in the right direction to understand it better.  I am better emotionally knowing, than guessing.   

    You were kind to respond, I am very appreciative,

    Mary

     

  • PeprmntPat55
    PeprmntPat55 Member Posts: 70 Member
    #4
    Welcome but Not Welcome

    Hi Mary! I want to welcome you but I'm sorry I have to!  First let me say my thoughts and prayers are with you as you navigate this journey. I have NHFL and am in remission but I didn't have it in my eye. I know you are frightened but as Max says, knowledge is power. You are at the right place in the forum. 

    Blessings to you and keep us informed. 

    Pat

  • Mary1864
    Mary1864 Member Posts: 39
    #5
    po18guy said:

    Just saw this...

    I ended up with three cancers in 2015: PTCL-NOS (aggressive), AITL (aggressive) and 20q Deletion Myelodysplastic Syndrome (indolent). A new regimen (TEC) eradicated all detectable traces so that I could go on to tranplant.

    Lymphoma remains just as treatable at all stages and disease spreads. Perhaps the most common tactic regarding folicular lmyphoma is Watch & Wait. Evidence indicates that treatment received too early may cause it to behave badly in the future. Some patients are watched for years before any action is needed.

    EDIT: FWIW, I have been stage IV at least twice, probably 100 tumors total, but once the right cocktail is found, those tumors melt away.

    So, it may be one that you simply live with.  

    Thank you.

    Thank you. 

     

  • po18guy
    po18guy Member Posts: 1,508 Member
    #6
    Just saw this...

    I ended up with three cancers in 2015: PTCL-NOS (aggressive), AITL (aggressive) and 20q Deletion Myelodysplastic Syndrome (indolent). A new regimen (TEC) eradicated all detectable traces so that I could go on to tranplant.

    Lymphoma remains just as treatable at all stages and disease spreads. Perhaps the most common tactic regarding folicular lmyphoma is Watch & Wait. Evidence indicates that treatment received too early may cause it to behave badly in the future. Some patients are watched for years before any action is needed.

    EDIT: FWIW, I have been stage IV at least twice, probably 100 tumors total, but once the right cocktail is found, those tumors melt away.

    So, it may be one that you simply live with.  

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