follicular

allen8855
allen8855 Member Posts: 6
Hi!! I'm just a bundle of nerves. The cancer i have is follicular NHL grade 3 stage 4 I had my spleen removed. done the chop treatments now on my last round of retuxan in July. got to get c-scan 7-1 . But the last several months i'm expericing some major fatique and pain in lower abdomin area.. Depression is bad just found out my brother has only months left with us[large B cell]

Comments

  • dixiegirl
    dixiegirl Member Posts: 1,043
    Fear
    I understand your fear. I know you are scared, but sounds like you are finishing your treatments. Have you talked to your onc about the pain you are having? I too was very tired at the end of my treatments as they are cumulative. It takes time to get your energy back. I think it's normal to think it's getting worse before scan time....I do it too.

    Rituxan is a good treatment too, it's what I am doing at this time only. It's working and reducing the spots from this last relapse. I was convinced the treatment wasn't working :)

    I also have a friend of mine who has DLBC and chemo and rads put her in remission...for 3 years so far, so have hope with your brother.

    Take care, get lots of rest and be kind to yourself.

    Beth
  • COBRA666
    COBRA666 Member Posts: 2,401
    FOLLICULAR
    I start my first round of r-chop in a week. Got stage 4 too. Scared also. How long has your brother had the large b-cell? Why can't they do more for him? Have they tried the rituxamab? John
  • allen8855
    allen8855 Member Posts: 6
    dixiegirl said:

    Fear
    I understand your fear. I know you are scared, but sounds like you are finishing your treatments. Have you talked to your onc about the pain you are having? I too was very tired at the end of my treatments as they are cumulative. It takes time to get your energy back. I think it's normal to think it's getting worse before scan time....I do it too.

    Rituxan is a good treatment too, it's what I am doing at this time only. It's working and reducing the spots from this last relapse. I was convinced the treatment wasn't working :)

    I also have a friend of mine who has DLBC and chemo and rads put her in remission...for 3 years so far, so have hope with your brother.

    Take care, get lots of rest and be kind to yourself.

    Beth

    follicular
    Thanks, Its nice to know there are people like yourself out there.
  • allen8855
    allen8855 Member Posts: 6
    COBRA666 said:

    FOLLICULAR
    I start my first round of r-chop in a week. Got stage 4 too. Scared also. How long has your brother had the large b-cell? Why can't they do more for him? Have they tried the rituxamab? John

    follicular
    The r-chop wasn't as bad as i thought.for me. Hang in there and keep in touch.I'm new to this site, but its wonderful wish I found it before.
  • kayebadoe
    kayebadoe Member Posts: 81
    allen8855 said:

    follicular
    The r-chop wasn't as bad as i thought.for me. Hang in there and keep in touch.I'm new to this site, but its wonderful wish I found it before.

    How many rounds of RCHOP did
    How many rounds of RCHOP did you have?
  • COBRA666
    COBRA666 Member Posts: 2,401
    allen8855 said:

    follicular
    The r-chop wasn't as bad as i thought.for me. Hang in there and keep in touch.I'm new to this site, but its wonderful wish I found it before.

    FOLLICULAR
    Allen, thanks for the response. Yes, it is a wonderful site. Its like another world we are in now. John
  • dixiegirl
    dixiegirl Member Posts: 1,043
    COBRA666 said:

    FOLLICULAR
    Allen, thanks for the response. Yes, it is a wonderful site. Its like another world we are in now. John

    Cancer world
    You are very right John, this is a new world and new experience. Humor is extremely important. Laugh at yourself. Look for the positives in everything. Chemo brain is wonderful..........the perfect excuse for walking into rooms for no reason. Forgetting what you're doing 1/2 way through it LOL. Forget the 2nd half of your sentence as you're saying it LOL.

    Someone told me once, do NOT scrub your face too hard, you'll rub your eyebrows off. I cracked up and was very careful hahaha. John I will tell you, keep the kleenex handy, you'll lose nose hair too, which makes your nose run all the time.

    I was thoroughly amazed at what chemo was like....it was NOTHING like I thought it would be. I had this horrible image in my head and I couldn't have been more wrong. It is different, but it IS doable.

    Have a great weekend!
    Beth
  • onlytoday
    onlytoday Member Posts: 609 Member
    dixiegirl said:

    Cancer world
    You are very right John, this is a new world and new experience. Humor is extremely important. Laugh at yourself. Look for the positives in everything. Chemo brain is wonderful..........the perfect excuse for walking into rooms for no reason. Forgetting what you're doing 1/2 way through it LOL. Forget the 2nd half of your sentence as you're saying it LOL.

    Someone told me once, do NOT scrub your face too hard, you'll rub your eyebrows off. I cracked up and was very careful hahaha. John I will tell you, keep the kleenex handy, you'll lose nose hair too, which makes your nose run all the time.

    I was thoroughly amazed at what chemo was like....it was NOTHING like I thought it would be. I had this horrible image in my head and I couldn't have been more wrong. It is different, but it IS doable.

    Have a great weekend!
    Beth

    This sight
    I am brand new to all of this. It feels like the lymphoma underworld! Thank God you are all helping eachother thru this. Just got preliminary dx low grade b cell follicular . Have first hemotologist appt Monday and am pretty nervous. I am anemic and have discomfort upper ab and ribs. Hoping they can stage it soon because I'm getting more anxious by the dayl. I'm an optomist but I will admit this has shaken me.
  • onlytoday
    onlytoday Member Posts: 609 Member
    Allen
    I'm very sorry to hear about your brother. I hope the progn. for him is wrong.

    I'm all new to this. I feel such discomfort in my upper abdom. and rib area, thinking it might be spleen but I hope not. Should know more next week.\

    I'm so glad I found this sight.

    God Bless - hope you feel better.
  • COBRA666
    COBRA666 Member Posts: 2,401
    LARGE B-CELL
    Allen, really sorry to hear about your brother. If you don't mind sharing his history with the disease, what happened? I would think they would be able to do something to help him. Did it spread or what? How long has he had large b-cell? Has he gone for 2nd and 3rd opinions? I am sure most of us here would be interested in what is going on. John
  • allen8855
    allen8855 Member Posts: 6
    kayebadoe said:

    How many rounds of RCHOP did
    How many rounds of RCHOP did you have?

    rchop
    it was in 2008 I believe it was 4 or 6 I remember ther was three weeks off between treatments
    2008 was a diffacult year.
  • allen8855
    allen8855 Member Posts: 6
    COBRA666 said:

    LARGE B-CELL
    Allen, really sorry to hear about your brother. If you don't mind sharing his history with the disease, what happened? I would think they would be able to do something to help him. Did it spread or what? How long has he had large b-cell? Has he gone for 2nd and 3rd opinions? I am sure most of us here would be interested in what is going on. John

    brother
    hi John,

    I went out of state to visit him this weekend. He's getting rad. threatment to his brain now. he was very sick. He want talk much about it I remember he had just got the news last Sept. a week before one of my daughters wedding. Other than my wife he's my best friend in the world.