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karen50
karen50 Member Posts: 5
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi, my name is Karen and I was diagnosed with Follicullar Lymphoma stage 1 in Dec.2012. it was caught early because I had blackfly bites in the summer and one bump had not gone down. My family dr., endocrinologist and plastic surgeon all told me it was a lipoma but upon removal, they discovered a 5cm tumour behind my right ear. I had 4 weeks of radiation, a curative dose, I was told and now go for my quarterly checkups.  I have developed anemia and am taking iron pills but am having a difficult time coping with the chronic fatigue. Coming to this site has been a godsend to me because I felt "misunderstood" wrt my tiredness still 2 years after my radiation. Knowing that others have the same issues, feelings and fears have made it easier for me to cope. My biggest "problem" is that I expected my life to return to the same after treatment, that I would be able to do the same things but my energy levels are not always cooperative. I went back to the gym last year but i go full force 1 week and need 2 weeks to recuperate (lol). It seems that others have had succes working up to small daily walks so I will try this once it warms up here(been minus 27 with windchill) but today is a balmy minus 2. Thanks for giving me a place where I can feel normal expressing my feelings!

Comments

  • sphillips2
    sphillips2 Member Posts: 2
    #2
    Hello

    I haven't been diagnosed with anything, but I have some concerns. Can you think of any other symptoms that you may have ignored before you were diagnosed? 

  • karen50
    karen50 Member Posts: 5
    #3
    sphillips2 said:

    Hello

    I haven't been diagnosed with anything, but I have some concerns. Can you think of any other symptoms that you may have ignored before you were diagnosed? 

    Hi

    I can honestly say that I had no other symptoms other than 1 swollen bump behind my ear which is why all my doctors thought it was fatty tissue. I had just had my physical 3 months before my diagnosis and my bloodwork was fine. Once I was diagnosed , they did more blood tests which showed no abnormalities and I had a Ct scan to verify and stage my cancer. Only advice I would give you is to go back to your GP and express your concerns.  I love in Toronto, Canada so it is easier for me to access Cancer Care since our government pays for our medical.  Hope this helps and take care

  • Mary N.
    Mary N. Member Posts: 100
    #4
    fatigue

    Hi, I would really suggest that you take little steps in your recovery of energy.  I have found, as you said, going for walks and increasing it just a bit, helpful.  When you go to a gym try every other day and start with part of the routine and work up.  I'm getting back energy but it has been a long haul.

  • Unknown
    Unknown
    #5
    Stage I FNHL

    You and I were diagnosed about a year apart. Mine was in October 2011. My FNHL however was Stage IV as it had entered the bone marrow. Stage 1 is definitely curable! Have you had a PET scan? Might be a good idea.

    I hate blackflies. When I lived in Nova Scotia I just hated to see summer come on because the blackflies came out in such large numbers. They were everywhere in the rural area where I lived.You could hear them. Even went into the car through the air intakes. Turn the A/C on and they would blow out the vents into your face.They also like to hide under car seats and nibble on your ankles as you drive down the road. I reacted violently to the bites and each one became a running sore which took weeks to fully heal. I still have the scars on my ankles.

    Sorry for the diversion and best of luck. Your situation sounds promising for a cure.

  • karen50
    karen50 Member Posts: 5
    #6
    Mary N. said:

    fatigue

    Hi, I would really suggest that you take little steps in your recovery of energy.  I have found, as you said, going for walks and increasing it just a bit, helpful.  When you go to a gym try every other day and start with part of the routine and work up.  I'm getting back energy but it has been a long haul.

    fatigue

    Thank you for the advice. You are absolutely right about little steps. It's hard not to overdo it but i am learning to trust my body about hold back even tough my mind says GO! Walking really is the best and now that the temp is above freezing ad snow has all melted, it's all good. 

  • karen50
    karen50 Member Posts: 5
    #7
    unknown said:

    Stage I FNHL

    You and I were diagnosed about a year apart. Mine was in October 2011. My FNHL however was Stage IV as it had entered the bone marrow. Stage 1 is definitely curable! Have you had a PET scan? Might be a good idea.

    I hate blackflies. When I lived in Nova Scotia I just hated to see summer come on because the blackflies came out in such large numbers. They were everywhere in the rural area where I lived.You could hear them. Even went into the car through the air intakes. Turn the A/C on and they would blow out the vents into your face.They also like to hide under car seats and nibble on your ankles as you drive down the road. I reacted violently to the bites and each one became a running sore which took weeks to fully heal. I still have the scars on my ankles.

    Sorry for the diversion and best of luck. Your situation sounds promising for a cure.

    Blackflies

    Thanks for your comments! sometimes diversion is good. you may think i'm silly to say but i LOVE those blackflies. They saved my life because i would not have noticed my bump and had it checked out if they hadnt bitten me. I realize how fortunate I am to be at Stage I and hope that your situation is also promising. 

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