SLL/CLL new diagnosis please help me with info

Mz. Fabulousity
Mz. Fabulousity Member Posts: 7
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi

My name is Anna. I am a 39 year old mommy and teacher to 3 little boys. I have recently been diagnosed withNon H Small lymphocitic lymphoma stage 4. I have swolleny lymphnodes and it is 30 % in my bone marrow. I have gone to 2 oncologist. The first one says treat with RCHOP the second one at Cedars Sinai says to watch and wait or treat with FCR if I want. If I want??? what does that mean?? I have a third opinion today as a sorta "tie breaker" I suppose... I am so scared, and have no idea wether or not to treat or wait. I have no symptoms except for swollen lymphnodes in my neck and arm pit.

If you are living with SLL/CLL please Hollah back ( lol) and share info .

Thanks

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #2
    SLL/CLL
    Anna,
    My name is John and I do not have sll/cll,but I do have follicular nhl. I do not really know what sll/cll is. Exactly what is it? It almost sounds the same as to what I have,but it probably is not. I have done so much research on the follicular type I think sometimes I have tunnel vision about it. I do not really like going to the websites because they are so outdated with any info.,so if you can let us know a little more about it hopefully we can shed some light on it all. If anyone else out there has any info feel free to let us know. John (FNHL-1-4A-5/10)
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #3
    COBRA666 said:

    SLL/CLL
    Anna,
    My name is John and I do not have sll/cll,but I do have follicular nhl. I do not really know what sll/cll is. Exactly what is it? It almost sounds the same as to what I have,but it probably is not. I have done so much research on the follicular type I think sometimes I have tunnel vision about it. I do not really like going to the websites because they are so outdated with any info.,so if you can let us know a little more about it hopefully we can shed some light on it all. If anyone else out there has any info feel free to let us know. John (FNHL-1-4A-5/10)

    Hi
    Welcome to our wonderful group! I don't have SLL but this last time is Follicular stage 3. One of the hardest things about cancer for me to understand is the concept of watch and wait. I just wanted it gone. Now my attitude has changed, I'd rather not treat until it becomes a have to thing. I am more or less worried about running out of options if I treat too much, but that's wayyyy down the road.

    Get your options and take some time to consider what's best for you. A third opinion is a great idea especially if you have doubts honey. Sounds like you're not having a lot of symptoms that are bothering you. Take your time, don't rush yourself.

    It'll be ok. Take care of yourself.

    Beth
  • onlytoday
    onlytoday Member Posts: 609 Member
    #4
    dixiegirl said:

    Hi
    Welcome to our wonderful group! I don't have SLL but this last time is Follicular stage 3. One of the hardest things about cancer for me to understand is the concept of watch and wait. I just wanted it gone. Now my attitude has changed, I'd rather not treat until it becomes a have to thing. I am more or less worried about running out of options if I treat too much, but that's wayyyy down the road.

    Get your options and take some time to consider what's best for you. A third opinion is a great idea especially if you have doubts honey. Sounds like you're not having a lot of symptoms that are bothering you. Take your time, don't rush yourself.

    It'll be ok. Take care of yourself.

    Beth

    watch and wait?
    Hi,

    I have stage 4 Marginal zone lymphoma. I also had two differing opinions and needed to go to a third to figure out what to do. (My first and third agreed)

    So.. my thoughts for you would be to get the third opinion and hopefully 2 out of three agree and then you can go with who you feel most comfortable with. As Beth said we eventually realize that as much as we want this stuff out of us yesterday ! we have to think about down the road. Right now mine is being held at bay and we are watching and waiting.

    So get some good doctor advice and think about you What makes sense to and for you? All the best to you and stay with this discussion board. Everyone here is basically in the same boat and will really really help you through this. You are not alone.Blessings.

    Donna
  • gracielou
    gracielou Member Posts: 1
    #5
    SLL
    I was diagnosed with SLL in January 2010 after they found enlarged axillary glands from my routine mammogram. CT scan revealed it was only in the axillary glands (armpits) but it was also in my bone marrow, so I was in Stage 4 also. My oncologist recommended first line treatment of Rituxan. I had 4 infusions (once a week for 4 weeks) and it put me in remission, so I was lucky that I responded so well to the drug and didn't have to have the nasty chemo. "Watchful waiting" was also an option but I chose to attack it now since I currently have good insurance coverage, because who knows when that could change. I had no symptoms except mild fatigue, which is also a symptom of menopause which I have been fighting for years. Even all my bloodwork was completely normal! If I were you, I would go ahead and have it treated. I know a neighbor who went the "watchful waiting" route. About 6 years later, she went through treatments and didn't do as well. Now it's back (a year later). Everyone is different, though, so you never know. I'm 56 years old....you seem to be young for this type NHL! From what I've read about it, the median age of diagnosis in mid-60's. Good luck in whatever you decide to do!
    Mary
  • kb64
    kb64 Member Posts: 6
    #6
    You story is so much like
    You story is so much like mine. I was diagnosed at age 37 with stage 4 SLL and at that time they didnt refer to CLL. I also had 30% bone marrow involvement. all my labs were normal. I did 6 months of cytoxan fludarabine and rituxan. then every 6 months of rituxan for 2 yrs. I stayed in remission for 9 1/2 yrs and it is now back. only a few lymph nodes, my bloodwork is all normal and we are now taking the watch and wait position this time. If I had to do it over I would do the treatment just as I did. Its been 10 years this month that I was diagnosed before it came back and I think those are pretty good results. My oncologist is hoping I wont have to be treated for 2-3 yrs. Me too. haha Good luck with whatever you decide.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #7
    kb64 said:

    You story is so much like
    You story is so much like mine. I was diagnosed at age 37 with stage 4 SLL and at that time they didnt refer to CLL. I also had 30% bone marrow involvement. all my labs were normal. I did 6 months of cytoxan fludarabine and rituxan. then every 6 months of rituxan for 2 yrs. I stayed in remission for 9 1/2 yrs and it is now back. only a few lymph nodes, my bloodwork is all normal and we are now taking the watch and wait position this time. If I had to do it over I would do the treatment just as I did. Its been 10 years this month that I was diagnosed before it came back and I think those are pretty good results. My oncologist is hoping I wont have to be treated for 2-3 yrs. Me too. haha Good luck with whatever you decide.

    Great News
    kb64,
    That is great with a remission of 9 1/2 years. The watch and wait thing always gets to me though. Its like,what are they watching and waiting for. John(FNHL-1-4A-5/10)
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #8
    COBRA666 said:

    Great News
    kb64,
    That is great with a remission of 9 1/2 years. The watch and wait thing always gets to me though. Its like,what are they watching and waiting for. John(FNHL-1-4A-5/10)

    Great News!
    What a tremendous remission. I have Follicular stage 3 on my 4th time in 5 years. Getting ready to do Treanda Chemo, then SCT. I'm scared, but taking a minute at a time. The goal is 80% chance of 5-6 year remission.......I'm good with those numbers.

    Congratulations! Enjoy the watch and wait while you can.

    Beth
  • Squirrel2011
    Squirrel2011 Member Posts: 1
    #9
    Hi!  My name is Linda and I

    Hi!  My name is Linda and I was diagnosed with CLL about 1 1/2 years ago.  I was in denial and went for 2 different opinions before going to the Cancer Treatment Center.  All of the doctors agreed on "watch and wait".  There is no reason to put yourself through something that will do more harm when you might go many years without needing treatment.  It is scary!  Very, very scary!  I'm in the acceptance mode now and have changed doctors again to another treatment center, with the same results.  So, I guess I should just simmer my jets and enjoy life.  I do get tired and need more sleep than usual, but I am able to hold down a full time job.  My white blood count ahs been as high as 48.  I recently started something new Methotrexate 2.5, I take 6 pills every monday and my blood count has gone down to 25 for the first time since my diagnosis.  The red blood count has reacted at all, but I am hopeful.  Hang in there!  We have a lot of life to live.

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