31 years old with Small Lymphocytic Lymphoma. Really need to talk with someone who is in the same si

Seamus Riley
Seamus Riley Member Posts: 8
Hey there,

Seamus Riley of Arlington, Va. 31 years old and just found out I have Small Lymphocytic Lymphoma. I know this is normally found in older people so I am trying to find people under 50 who are in the same boat.
Posting here is fine or email works great.
[email protected]
«1

Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Bumping up..
    Hi Seamus,
    I have Follicular NHL,60 years old, but thought I'd bump your post back up to the top of our discussion list in hopes of someone lending you a hand. I hate to see a post go completely unanswered...must make a person feel like no-one cares and I'd feel bad if you thought that of our group. You can learn from older folks that have SLL, so maybe one of them will see this and jump in with useful information. We would be happy to assist you with support and love when you start treatment...this group sure helped me out. Good luck to you and try to stay as positive as possible. It can get very stressful in the beginning with all of the testing and preparation for treatment. We are here for you.
    Best wishes...Sue (FNHL-2-3A-6/10)
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    allmost60 said:

    Bumping up..
    Hi Seamus,
    I have Follicular NHL,60 years old, but thought I'd bump your post back up to the top of our discussion list in hopes of someone lending you a hand. I hate to see a post go completely unanswered...must make a person feel like no-one cares and I'd feel bad if you thought that of our group. You can learn from older folks that have SLL, so maybe one of them will see this and jump in with useful information. We would be happy to assist you with support and love when you start treatment...this group sure helped me out. Good luck to you and try to stay as positive as possible. It can get very stressful in the beginning with all of the testing and preparation for treatment. We are here for you.
    Best wishes...Sue (FNHL-2-3A-6/10)

    Follicular
    Hi Seamus,

    Welcome. Sorry but I have Follicular stage 3. Please realize we are all different but the same when it comes to dealing with cancer.

    Please come back and join our family!

    Take care,
    Beth
  • Seamus Riley
    Seamus Riley Member Posts: 8
    allmost60 said:

    Bumping up..
    Hi Seamus,
    I have Follicular NHL,60 years old, but thought I'd bump your post back up to the top of our discussion list in hopes of someone lending you a hand. I hate to see a post go completely unanswered...must make a person feel like no-one cares and I'd feel bad if you thought that of our group. You can learn from older folks that have SLL, so maybe one of them will see this and jump in with useful information. We would be happy to assist you with support and love when you start treatment...this group sure helped me out. Good luck to you and try to stay as positive as possible. It can get very stressful in the beginning with all of the testing and preparation for treatment. We are here for you.
    Best wishes...Sue (FNHL-2-3A-6/10)

    Thank you
    Sue,

    Thank you so much for that. I was getting a little worried that I would get zero responses:)
    I am in the waiting stage until my next round of testing, it can get so confusing. I live in Arlington V.A., but am seeing a doctor at MD Anderson as well as one at Georgetown in DC. I am trying to decide if I should stick with Anderson or with the local hospital. Does traveling to Houston, getting chemotherapy then flying home all in a two day period sound crazy. I was told I needed to do all my treatment down there in order to be part of their clinical trials. Assuming I will start treatment in sept or oct, I was planning on making the trip once a month until I was finished. A lady at my work thought that would be to much.

    I love that this group exists,

    Sincerely

    Seamus
  • Seamus Riley
    Seamus Riley Member Posts: 8
    allmost60 said:

    Bumping up..
    Hi Seamus,
    I have Follicular NHL,60 years old, but thought I'd bump your post back up to the top of our discussion list in hopes of someone lending you a hand. I hate to see a post go completely unanswered...must make a person feel like no-one cares and I'd feel bad if you thought that of our group. You can learn from older folks that have SLL, so maybe one of them will see this and jump in with useful information. We would be happy to assist you with support and love when you start treatment...this group sure helped me out. Good luck to you and try to stay as positive as possible. It can get very stressful in the beginning with all of the testing and preparation for treatment. We are here for you.
    Best wishes...Sue (FNHL-2-3A-6/10)

    Thank you
    Sue,

    Thank you so much for that. I was getting a little worried that I would get zero responses:)
    I am in the waiting stage until my next round of testing, it can get so confusing. I live in Arlington V.A., but am seeing a doctor at MD Anderson as well as one at Georgetown in DC. I am trying to decide if I should stick with Anderson or with the local hospital. Does traveling to Houston, getting chemotherapy then flying home all in a two day period sound crazy. I was told I needed to do all my treatment down there in order to be part of their clinical trials. Assuming I will start treatment in sept or oct, I was planning on making the trip once a month until I was finished. A lady at my work thought that would be to much.

    I love that this group exists,

    Sincerely

    Seamus
  • Seamus Riley
    Seamus Riley Member Posts: 8
    allmost60 said:

    Bumping up..
    Hi Seamus,
    I have Follicular NHL,60 years old, but thought I'd bump your post back up to the top of our discussion list in hopes of someone lending you a hand. I hate to see a post go completely unanswered...must make a person feel like no-one cares and I'd feel bad if you thought that of our group. You can learn from older folks that have SLL, so maybe one of them will see this and jump in with useful information. We would be happy to assist you with support and love when you start treatment...this group sure helped me out. Good luck to you and try to stay as positive as possible. It can get very stressful in the beginning with all of the testing and preparation for treatment. We are here for you.
    Best wishes...Sue (FNHL-2-3A-6/10)

    Thank you
    Sue,

    Thank you so much for that. I was getting a little worried that I would get zero responses:)
    I am in the waiting stage until my next round of testing, it can get so confusing. I live in Arlington V.A., but am seeing a doctor at MD Anderson as well as one at Georgetown in DC. I am trying to decide if I should stick with Anderson or with the local hospital. Does traveling to Houston, getting chemotherapy then flying home all in a two day period sound crazy. I was told I needed to do all my treatment down there in order to be part of their clinical trials. Assuming I will start treatment in sept or oct, I was planning on making the trip once a month until I was finished. A lady at my work thought that would be to much.

    I love that this group exists,

    Sincerely

    Seamus
  • Seamus Riley
    Seamus Riley Member Posts: 8
    allmost60 said:

    Bumping up..
    Hi Seamus,
    I have Follicular NHL,60 years old, but thought I'd bump your post back up to the top of our discussion list in hopes of someone lending you a hand. I hate to see a post go completely unanswered...must make a person feel like no-one cares and I'd feel bad if you thought that of our group. You can learn from older folks that have SLL, so maybe one of them will see this and jump in with useful information. We would be happy to assist you with support and love when you start treatment...this group sure helped me out. Good luck to you and try to stay as positive as possible. It can get very stressful in the beginning with all of the testing and preparation for treatment. We are here for you.
    Best wishes...Sue (FNHL-2-3A-6/10)

    Wow
    So sorry to have posted that many times, I have no idea how I did that one:)
  • Seamus Riley
    Seamus Riley Member Posts: 8
    dixiegirl said:

    Follicular
    Hi Seamus,

    Welcome. Sorry but I have Follicular stage 3. Please realize we are all different but the same when it comes to dealing with cancer.

    Please come back and join our family!

    Take care,
    Beth

    Thank you for that
    Beth

    Thank you for that sweet message. I hope to get close to many of you during this adventure i am about to begin.
    I was just reading up on your disease and noticed the "watch and wait" method is also considered. Did you wait until you were symptomatic or take a more aggressive approach?

    I hope asking these questions is ok? I have yet to learn the etiquette of the family here:)

    Sincerely
    Seamus
  • She514
    She514 Member Posts: 47
    Hello!
    Hi Seamus,
    I received a diagnosis of CLL/SLL in May of this year from core needle biopsy. Medical Oncologist isn't convinced it's CLL/SLL. He recommends a node biopsy to find out the type. What he knows is that it is low grade B Cell, stage III, no symptoms. At this time he recommends node biopsy and watch and wait. Since regardless of the subtype, I will continue to be watch and wait, I have declined the biopsy for now. I am 57.

    Sorry you had to find this site, especially at such a young age, but you can acquire a lot of info from the members. I don't know about you but I want to know everything so I have an idea of what to expect.

    Good Luck!

    Rosie
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member

    Thank you for that
    Beth

    Thank you for that sweet message. I hope to get close to many of you during this adventure i am about to begin.
    I was just reading up on your disease and noticed the "watch and wait" method is also considered. Did you wait until you were symptomatic or take a more aggressive approach?

    I hope asking these questions is ok? I have yet to learn the etiquette of the family here:)

    Sincerely
    Seamus

    Treatments
    Thanks Seamus,

    When it started out I was having symptoms so we did treat it with chemo, I did CVP & R. The second time I did watch and wait for about 9 months, then treated with radiation. The third time we did Rituxan only with maintenance for awhile. This last time we did RICE chemo and SCT which I am recovering from now.

    Personally, I would wait to treat until symptoms become a pain in the butt. Why put your body through all this until absolutely necessary, but ALWAYS talk to your onc about what they think is best for you.

    Take care
    Beth
  • momforlife
    momforlife Member Posts: 6
    Seamus- I sent you an
    Seamus- I sent you an e-mail. Contact me anytime. 43 with SLL and doing well. Pam
  • Seamus Riley
    Seamus Riley Member Posts: 8

    Seamus- I sent you an
    Seamus- I sent you an e-mail. Contact me anytime. 43 with SLL and doing well. Pam

    Email
    Pam,

    I responded to the email. Just an Fyi in case you check this first.

    Seamus
  • Seamus Riley
    Seamus Riley Member Posts: 8
    dixiegirl said:

    Treatments
    Thanks Seamus,

    When it started out I was having symptoms so we did treat it with chemo, I did CVP & R. The second time I did watch and wait for about 9 months, then treated with radiation. The third time we did Rituxan only with maintenance for awhile. This last time we did RICE chemo and SCT which I am recovering from now.

    Personally, I would wait to treat until symptoms become a pain in the butt. Why put your body through all this until absolutely necessary, but ALWAYS talk to your onc about what they think is best for you.

    Take care
    Beth

    Wow your Strong
    Beth,

    I cannot imagine having as much strength as you do.

    I go back to Houston in September to do another bone marrow and some more test. I have had a couple differences in opinion as to when I should start treatment. I really hope I figure all this out when I make the trip down there.
    You have really been through a war it seems like. I hope you are feeling as good as possible!!!

    Thank you so much for your responses..

    Seamus
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member

    Wow your Strong
    Beth,

    I cannot imagine having as much strength as you do.

    I go back to Houston in September to do another bone marrow and some more test. I have had a couple differences in opinion as to when I should start treatment. I really hope I figure all this out when I make the trip down there.
    You have really been through a war it seems like. I hope you are feeling as good as possible!!!

    Thank you so much for your responses..

    Seamus

    Thanks
    Seamus,

    I think I am just flying by the seat of my pants at this point honey. I just do what they tell me to do lol.

    Good luck in September and MD Anderson is a terrific hospital. Get more opinions if you need to. I don't think you can get enough opinions.

    This IS a war that we are ALL fighting!

    Take care,
    Beth
  • SolarMass
    SolarMass Member Posts: 3
    dixiegirl said:

    Follicular
    Hi Seamus,

    Welcome. Sorry but I have Follicular stage 3. Please realize we are all different but the same when it comes to dealing with cancer.

    Please come back and join our family!

    Take care,
    Beth

    you are amazing
    hi beth. i have been reading your posts and i think you are an amazing person. you have helped me alot today. thanks

    - jason
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    SolarMass said:

    you are amazing
    hi beth. i have been reading your posts and i think you are an amazing person. you have helped me alot today. thanks

    - jason

    Thanks
    Hi Jason,

    Thank you for the sweet post. I appreciate it. I just keep putting one foot in front of the other and keep trying to move forward.

    I hate it when I slip backwards!

    Take care,
    Beth
  • Coupe35
    Coupe35 Member Posts: 45
    42 years old
    I was 42 years old when I found out I had NHL. I thought to myself while I was waiting in the doctors office, "what am I doing with all these old people". This is suppose to be an old person diease and here I sit, the only young person in here. So I go with what the doctor recommend and that was CVP for 6 months. That kept me in remission until last year. Now I'm doing rituxian maintenance. But it's not so bad waiting in the doctors office now because I'm one of the old people, 66 years old.
  • cookingirl
    cookingirl Member Posts: 183

    Thank you
    Sue,

    Thank you so much for that. I was getting a little worried that I would get zero responses:)
    I am in the waiting stage until my next round of testing, it can get so confusing. I live in Arlington V.A., but am seeing a doctor at MD Anderson as well as one at Georgetown in DC. I am trying to decide if I should stick with Anderson or with the local hospital. Does traveling to Houston, getting chemotherapy then flying home all in a two day period sound crazy. I was told I needed to do all my treatment down there in order to be part of their clinical trials. Assuming I will start treatment in sept or oct, I was planning on making the trip once a month until I was finished. A lady at my work thought that would be to much.

    I love that this group exists,

    Sincerely

    Seamus

    Watchful Waiting
    Hi Seamus and welcome to our site. So sorry you got this diagnosis so young but anyone who's a rock climber as you look to be will be strong enough to conquer the Big C.

    I don't have your type of Lymphoma - mine is Follicular. I'm more than double your age but when I was diagnosed with no symptoms, the "watchful waiting" approach was suggested by several Oncologists (including Moffitt Cancer Center in Tampa). I was excited not to begin treatment right away, but in 9 months my abdominal tumor grew by leaps and bounds as shown on the PET scan and chemo started immediately. It was explained to me by the head of the Lymphoma Dept. of Moffitt ( my 35 year old son who lives near you in Harpers Ferry, WV flew down to meet with us because he and his sisters felt I should be doing SOMETHING to be treated and felt waiting was not proactive enough). Dr. Sotomayer as well as my local Oncologist on the East coast of FL whose practice is associated with Moffitt, said my own cells were fighting the cancer and when chemo was started those drugs would be killing healthy cells as well as cancerous ones. Therefore, it was advised to not use the drugs until the tumors grew because chemo would not be as effective until then. So I followed their advice.

    As for your cancer centers, you've chosen the # 1 rated in the nation according to several surveys - MD Anderson. In the past year a branch of that has opened in Orlando, an hour away from me. Is there not one closer to you than traveling to TX? My daughter had surgery for another illness at Georgetown and we were all very impressed with that hospital. Have you considered Johns Hopkins in Baltimore? It's highly ranked in the cancer centers and much closer to you. If you require chemo (which I just finished a year of) I would think it very inconvenient to be flying to TX every 3 or 4 weeks, not to mention expensive. Since you're recently diagnosed, I would look for second and/or third opinions closer to VA. Keep us posted in your journey - we care. Fran
  • peteh15
    peteh15 Member Posts: 2
    SML STAGE 4B
    Hi Seamus, Pete here from NZ, I was diagnosed with mine 2010, I had it widespread in Lymph nodes, in spleen and bone marrow, I had six months of chemo 70mg fludarabine,450mg cyclophosphamide,3 days only, month off, then 5 more times, finished in September 2010.
    Spleen decreased to normal size, slight % of cancer left, and everyday during oral treatment at home, got out of bed when not well and walked down my stairs out to letter box, walked to end of street daily, listened to music, read books, cooked dinner for friends, setup a table in local mall to raise awareness and funds for our Leukaemia blood foundation nz, helped people out whom were struggling with there diagnosis, attended meetings, fishing with my mate, babysitting, it is important to have and find a happy medium, and balance but also have faith in yourself, strength to get you through the bad times,and most of all we all are different, and have different life styles, at stage of diagnosis, its just remembering to smile and remind yourself you have a chance to live.
    So just remember Seamus, when you wake up no matter how you feel,say to yourself, life is precious, what am I going to do today.
    I have apart from coughs and colds, been great, now waiting for 20% confirmation of ITP, It is where my immune system antibodies has turned on my platelets and destroy them, so another week and I will finally find out, in the meantime just bit slower, watchout bruising and not cut myself, and take the prednisone high dosage, tranfusions when needed, had biopsy of bone marrow, tests, ct scan coming, in the meantime still doing what I can, plus got my type 2 diabetes, controlled.
    Live life to the fullest Seamus, Take Care, Good Luck from Pete in NZ
  • jacksrap
    jacksrap Member Posts: 5
    Small Lymphocytic Lymphoma
    Hi Seamus,

    Just read your comments, and wanted to let you know that I have had SLL for almost four years now. I have been on watch and wait, and would recommend that to everyone. The longer you can wait, the better it is. It does not help to get chemo early, only puts toxins in your body.

    I am in my sixties, am in Stage 4, and has turned into SLL/CLL as it is in my blood also. I have RB count at 10, WBC at 15,500, and very low platelet count at 60. Will need chemo if platelets stay that low in Jan 2012. If you are healty, try to stay that way, as the healtier you are the better you will be at fighting this cancer. If you are stage 1 or two, chech with your doctor about radiation treatment. It is effective in stage 1 and 2, but not for stage 3 and 4.No cure, but long, active life with this one. Lots of good things happening on the future for this thing.

    I would recommend that you get a Hematolists/Oncologist, they know about SLL. Do not use your local GP, they just don't know enough about this disease. Also I would go to www.lls.org , it is a great site for information. It is the Leukemia/Lymphyhoma Society.
  • boy34
    boy34 Member Posts: 20
    Watch and Wait
    Hey,

    I was diagnosed about 6 months ago with FNHL at age 42 and my doctors and I decided on the Watch and Wait!!! I was very much up in the air on the whole thing, because I always was a fighter and wanted just to kick its **** and be done with it!!I have lypmh node tumors on my neck and groin areas that were extremely large.I decided todo some research on diets and certain foods known to fight cancer cells and detox your body so ammune system can fight! Believe me i'm a meat and potato type guy and it wasnt easy for me to change things up! After doing certain things within two weeks my tumors have completely gone away and I was very excited about it, but unsure if it was just a coincidence. I went for my 6 month check up last week and my doctor was amazed that my tumors were gone and wanted to know what I have been doing. He told me at this point I dont have any physical signs of cancer, very good feeling to hear that!! I'm set up for a pet scan on wednesday the 14 to see if things did change for better or worse!!! I'm just telling you this because there's hope and if you or anyone one want to know what i've been doing, I would gladly post it or email you with it!! My email [email protected]

    Prayers for everyone

    Chris