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Semi-good news today :) Still low grade lymphoma grade 1-2. Bone Marrow is clean :)

So now looking at doing Treanda and SCT. I have an appointment with the transplant clinic on the 25th. I may qualify for a trial, we'll see. Regardless if I qualify for the trial or not, it's what's going to happen, but it'd be nice if a trial would pay for it.

He says Treanda may not eat my hair :) but it really doesn't matter in the long run. He said I have about 80% chance of obtaining a 5-6 year remission....how wonderful does THAT sound???

Bad news of the Day, my 85 year old father (who's memory is VERY bad and sliding fast) got his feelings hurt when he saw me put Jim's dad as an emergency contact. Both Jim and I tried explaining to him he lives only an hour and half away where my dad lives 2 and half hours away just makes sense. Plus he went into the hotel to check on my step-mother and came back out saying he forgot the room number and she didn't answer her phone. We told him the number and we bent back in and said she was ok. When I talked to her later, she said he never even tried calling her. It just breaks my heart.

Oh well. That's the news anyway. Hope everyone else gets better news than I got, even though I am not unhappy about it either.
Take care,
Beth

Comments

  • yesyes2
    yesyes2 Member Posts: 591
    News
    Hi Beth,

    Considering everything it could have been, your news is really pretty good. I'm so glad it hasn't transformed or gotten into your bone marrow. And the news on Treanda coming out of the cancer community is really good. It has been approved for fNHL treatment after first line and maintenance. Just read the report today. I know having to face a SCT has to be very scarey but a 5/6 yr remission sounds pretty darn good.

    So sorry about your Dad. That has to be equally difficult for you. Seems like challenges just keep coming your way.

    Take care and try to get some rest. Blessings and prayers are being sent your way.

    Loving thoughts too.
    Leslie
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    yesyes2 said:

    News
    Hi Beth,

    Considering everything it could have been, your news is really pretty good. I'm so glad it hasn't transformed or gotten into your bone marrow. And the news on Treanda coming out of the cancer community is really good. It has been approved for fNHL treatment after first line and maintenance. Just read the report today. I know having to face a SCT has to be very scarey but a 5/6 yr remission sounds pretty darn good.

    So sorry about your Dad. That has to be equally difficult for you. Seems like challenges just keep coming your way.

    Take care and try to get some rest. Blessings and prayers are being sent your way.

    Loving thoughts too.
    Leslie

    Thank you
    Thank you so much Leslie, your response made me tear up. I am afraid for my father more than me at this point. I just hate seeing him like this.

    It's starting to hit me that I won't be able to sleep in my own bed, be in my own house, and love on my hubby and puppies whenever I want to. Three and half months is a VERY long time to be away from my life. It's scary.

    And you are RIGHT, with everything it could have been, this was definitely good news. I thought I was used to cancer. I think I was wrong.

    Thank you again,
    Beth
  • yesyes2
    yesyes2 Member Posts: 591
    dixiegirl said:

    Thank you
    Thank you so much Leslie, your response made me tear up. I am afraid for my father more than me at this point. I just hate seeing him like this.

    It's starting to hit me that I won't be able to sleep in my own bed, be in my own house, and love on my hubby and puppies whenever I want to. Three and half months is a VERY long time to be away from my life. It's scary.

    And you are RIGHT, with everything it could have been, this was definitely good news. I thought I was used to cancer. I think I was wrong.

    Thank you again,
    Beth

    Support Needed
    Hi Beth,

    You have a lot ahead of you. And you can never get used to Cancer, I know because I have had cancer 4 times. You already know your strong, we on this board know your strong. You have handled everything that has come your way with such strength and dignity. It takes a strong person to be able to say they are scared and/or worried of what lies ahead. And I am very proud of you. I know the next several months will be a real challenge. Yes, 3 or 4 months is a long time to be away from your life. You just need to not lose sight of that 5/6 year remission.

    What transplant center are you going to? How far from your home is the center and is that why you will be gone that long from home? I have heared that the first consult is not only frightening but very overwhelming. The SCT Oncs tend to talk a lot about statistics and frighten the stuffing out of you. Keep in mind that you are not a statistic. Wish I lived closer to offer my support in person. I had a friend who had a SCT for her NHL back in 1994 or 1995 and she is still cancer free and going strong. She was only in the hospital for a month and lived about 50 miles from the center.

    One last item. The LLS has some great booklets and information on SCT from pre treatments to life after a SCT.

    Ok, rattled on too long. Thanks for reading.

    Blessings to you,
    With love,
    Leslie
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    yesyes2 said:

    Support Needed
    Hi Beth,

    You have a lot ahead of you. And you can never get used to Cancer, I know because I have had cancer 4 times. You already know your strong, we on this board know your strong. You have handled everything that has come your way with such strength and dignity. It takes a strong person to be able to say they are scared and/or worried of what lies ahead. And I am very proud of you. I know the next several months will be a real challenge. Yes, 3 or 4 months is a long time to be away from your life. You just need to not lose sight of that 5/6 year remission.

    What transplant center are you going to? How far from your home is the center and is that why you will be gone that long from home? I have heared that the first consult is not only frightening but very overwhelming. The SCT Oncs tend to talk a lot about statistics and frighten the stuffing out of you. Keep in mind that you are not a statistic. Wish I lived closer to offer my support in person. I had a friend who had a SCT for her NHL back in 1994 or 1995 and she is still cancer free and going strong. She was only in the hospital for a month and lived about 50 miles from the center.

    One last item. The LLS has some great booklets and information on SCT from pre treatments to life after a SCT.

    Ok, rattled on too long. Thanks for reading.

    Blessings to you,
    With love,
    Leslie

    Beth
    I can not say it any better than Leslie. John
  • vinny59
    vinny59 Member Posts: 1,032
    COBRA666 said:

    Beth
    I can not say it any better than Leslie. John

    keep fighting
    without repeating what everyone else said, I know you have a strong will, keep sight of the prize.......
  • Michele23
    Michele23 Member Posts: 168
    Treanda
    Hi Beth,There are a couple of us here doing Treanda.Being a 16 yr survivor I have done my share of treatments.This actually is the first time in a couple years I 've felt my neck muscles so the treatments is working well.Had more then a few side effects from the treatment,muscle aches ,itching,rash,and headaches so this is new for me.Tomorrow is my 3rd round,treatment takes 2days together.Onc said 4-6 treatments otherwise it will just return.Oh and this drug does not affect the hair.Why if your scan is clear are you considering more treatment? Have a good day,Michele
  • miss maggie
    miss maggie Member Posts: 929
    YES
    Beth,

    I am sorry it is not the news you wanted to hear. But, in my opinion, it might have been worse.

    Even though staging doesn't matter, it is wonderful news your bone marrow is not involved. Even then, there are so many treatments for bone marrow involvement. Sounds good to me, treatment with Treanda and SCT 80% remission for 5 to 6 years.

    Love Maggie
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    Michele23 said:

    Treanda
    Hi Beth,There are a couple of us here doing Treanda.Being a 16 yr survivor I have done my share of treatments.This actually is the first time in a couple years I 've felt my neck muscles so the treatments is working well.Had more then a few side effects from the treatment,muscle aches ,itching,rash,and headaches so this is new for me.Tomorrow is my 3rd round,treatment takes 2days together.Onc said 4-6 treatments otherwise it will just return.Oh and this drug does not affect the hair.Why if your scan is clear are you considering more treatment? Have a good day,Michele

    Scan
    The scan wasn't clear. I had spots in my armpit and under the collarbone. The collarbone area is new. I am having the treatments because i progressed while doing rituxan maintenance. They were worried that it may have changed to aggressive or a possible new cancer.

    So the news of still lowgrade and no bone marrow activity was fantastic news.

    My onc's office gave me a new website to check out. It's oncologist approved site cancer.net or .com I can't remember. It was awesome though.

    I get the frickin tube out at 2pm today..............THANK YOU GOD.
  • allmost60
    allmost60 Member Posts: 3,178
    Darn it....
    Hi Beth,
    Well darn...I sure was hoping "EVERYTHING" would come back clean. I know how your feeling..(somewhat)..when I got my scan in January I was happy the majority of the scan was clean,and no progression, but was very disappointed when it showed the tumor under my colar bone was still active. I soooo wanted the "full remission" like John, Tom and others had gotten. My doctor said he "hoped" the rituxan would clear up the one tumor, but he didn't give me a 100% of it happening, so... I sit here and "wonder". It is comforting to know that there are other options available if the rituxan fails and hearing your story gives me a road map to mull around in my mind. I get alot of strength and hope from you Beth. You have alot to deal with, but your strength will get you through whats ahead. I'm so sorry about your dad..it's heartbreaking when our parents or loved ones reach this stage in the ageing process. My prayers will be with you daily!Hang in there and know we are "ALWAYS" here for you.
    Much love...Sue (FNHL-2-3A-6/10)
  • JoanieP
    JoanieP Member Posts: 573
    semi good
    Beth it sounds like pretty good news to me. I am glad there is no bone marrow involvement. Do you know the age limit for a bmt. I am 63 and was wondering the cut off age. Sorry to hear about your Dad . It is so hard when someone we love so much becomes more like a child and we become the caretaker. I am glad the wait is over and you will know what the next plan is. Take care and God bless you. Joanie