SLL: possible recurrence

kb64
kb64 Member Posts: 6
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I am new to this site. I have been in remission from SLL for 9 1/2 yrs and have recently found swollen lymph nodes at the back of scalp. I think my anxiety is greater now than originally. I know that recurrences are not good. Does anyone have experience with recurrence of Small lymphocytic lymphoma. I was dx at 37 yrs old and am now 47. Very healthy otherwise.

Comments

  • KC13167
    KC13167 Member Posts: 215
    #2
    Hi There kb. I'm glad you
    Hi There kb. I'm glad you joined us. I'm sure that someone with SLL will get back to you soon. Please let us know how your next appointment goes. We all know how awful waiting is. I can't think of anything that can lessen the mental/emotional aspects of anxiety. If I have the energy, I usually clean like a crazy woman. At least then I have a shot of feeling as if my body is tired and not so tense...and never rule out a bubble bath!

    Kellie
  • kb64
    kb64 Member Posts: 6
    #3
    KC13167 said:

    Hi There kb. I'm glad you
    Hi There kb. I'm glad you joined us. I'm sure that someone with SLL will get back to you soon. Please let us know how your next appointment goes. We all know how awful waiting is. I can't think of anything that can lessen the mental/emotional aspects of anxiety. If I have the energy, I usually clean like a crazy woman. At least then I have a shot of feeling as if my body is tired and not so tense...and never rule out a bubble bath!

    Kellie

    Kellie what great advice. I
    Kellie what great advice. I think the hardest part is the disappointment of knowing its back..even though I knew it would come back theres always that faint hope it wont..and I agree cleaning always worked for me too...
  • momforlife
    momforlife Member Posts: 6
    #4
    Hi Kelly- I am 43 with SLL,
    Hi Kelly- I am 43 with SLL, on watch and wait, so I don't have experience with a relapse. But I do know of one person who has relapsed several times over the course of nearly 20 years and is still strong as an ox- a real athlete. Feel free to contact me- for support or just to chat with someone who is also young and wondering how I got here. I have seen a reduction in symptoms and a great reduction in node size (most have gone away) with some lifestyle changes. I have an oncologist (Columbia-Presbyterian) who also practices functional medicine who helps guide me. Also an integrative oncologist (Yale) who adds insight. Both are MDs with open minds. I'm happy to share what I've learned & my contacts if it helps.

    You can e-mail me directly at pamhartnett@comcast.net if you'd like.

    Best of health, Pam
  • miss maggie
    miss maggie Member Posts: 929
    #5
    momforlife said:

    Hi Kelly- I am 43 with SLL,
    Hi Kelly- I am 43 with SLL, on watch and wait, so I don't have experience with a relapse. But I do know of one person who has relapsed several times over the course of nearly 20 years and is still strong as an ox- a real athlete. Feel free to contact me- for support or just to chat with someone who is also young and wondering how I got here. I have seen a reduction in symptoms and a great reduction in node size (most have gone away) with some lifestyle changes. I have an oncologist (Columbia-Presbyterian) who also practices functional medicine who helps guide me. Also an integrative oncologist (Yale) who adds insight. Both are MDs with open minds. I'm happy to share what I've learned & my contacts if it helps.

    You can e-mail me directly at pamhartnett@comcast.net if you'd like.

    Best of health, Pam

    Pam
    Dear Pam,

    Can I assume you live in New York? I also live in New York. Right now, I
    have no problem with the hospital or oncologist that is treating me.
    Albert Einstein. I was DX in Sept 2009, and was treated with Rituxan
    only. Once weekly for 4 weeks. My last 2 pet scans were negative for
    cancer activity and I have no further symtoms.

    I am very familiar with the doctors at Columbia, and Cornell New York Hospital.
    As you and I know, the 2 hospitals have merged. In the event my NHL goes south,
    I would not hesitate getting a second opinion from Columbia, Cornell. May I ask,
    what doctor is treating you? I attended a meeting sponsored by Columbia Cornell
    last year. I met some of the amazing doctors from both hospitals.

    Since you gave your email address on your post, I will send you an email also.

    Thanks for your update. Maggie

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