Roller coaster ride trying to decide

Faith_
Faith_ Member Posts: 56
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Thought that the decision had been made..still deciding Chemo every two months for 2 years or Radiation infusion Zevilin. Worried about secondary cancer that maybe cause by radiation. We know that we shouldn't be worried about the unknown and deal with what we do know and that's making sure lymphoma is kept away, but still a dilemma. Gur!!

Sorry, just Had to vent.

God Bless, everyone.

Comments

  • britta
    britta Member Posts: 107
    #2
    DECISION
    Hi Faith,

    I haven't been on this board for quite some time, but I was in the same position as you 16 months ago. I was back and forth and finally decided on the Zevalin. Hindsight, wish I would have gone with the rituxan maintenance. My cancer had returned to the same spot is was before and right now we are in a watch and wait game because it is in such a position they can't get a good enough sample to biopsy. My doctor told me that I could have Zevalin more than once, but I found out that isn't true, it's a one time deal, so maybe it should have been saved for later on. I also have developed very painful arthritis. I saw the nurse who administered my Zevalin a few weeks ago and asked her if there was much demand for the Zevalin and she said they hardly ever get a call about it. At a recent seminar in Mpls, they barely mentioned it.

    I wasn't sure whether I should post this, but it's good to look at both sides before we make such an important decision. I know others on this board are still cancer free after two years so weigh your options. I'll be praying for wisdom for you.
  • onlytoday
    onlytoday Member Posts: 609 Member
    #3
    britta said:

    DECISION
    Hi Faith,

    I haven't been on this board for quite some time, but I was in the same position as you 16 months ago. I was back and forth and finally decided on the Zevalin. Hindsight, wish I would have gone with the rituxan maintenance. My cancer had returned to the same spot is was before and right now we are in a watch and wait game because it is in such a position they can't get a good enough sample to biopsy. My doctor told me that I could have Zevalin more than once, but I found out that isn't true, it's a one time deal, so maybe it should have been saved for later on. I also have developed very painful arthritis. I saw the nurse who administered my Zevalin a few weeks ago and asked her if there was much demand for the Zevalin and she said they hardly ever get a call about it. At a recent seminar in Mpls, they barely mentioned it.

    I wasn't sure whether I should post this, but it's good to look at both sides before we make such an important decision. I know others on this board are still cancer free after two years so weigh your options. I'll be praying for wisdom for you.

    Thanks for posting
    Britta,
    I am presently on watch and wait as well. I don't know if Zevalin will ever be an option for me but I just want to thank you for sharing.

    By sharing your story you show the importance of this site. As we tell our stories and give our honest thoughts we truly help one another especially when faced with these life changing dilemmas such as Faith is facing right now.

    So thanks! God Bless

    Donna

    NHL MZ Stage IV 05/10 Rituximab 09/10 4 infusions. 10/10-present. Watch and Wait.
  • Faith_
    Faith_ Member Posts: 56
    #4
    britta said:

    DECISION
    Hi Faith,

    I haven't been on this board for quite some time, but I was in the same position as you 16 months ago. I was back and forth and finally decided on the Zevalin. Hindsight, wish I would have gone with the rituxan maintenance. My cancer had returned to the same spot is was before and right now we are in a watch and wait game because it is in such a position they can't get a good enough sample to biopsy. My doctor told me that I could have Zevalin more than once, but I found out that isn't true, it's a one time deal, so maybe it should have been saved for later on. I also have developed very painful arthritis. I saw the nurse who administered my Zevalin a few weeks ago and asked her if there was much demand for the Zevalin and she said they hardly ever get a call about it. At a recent seminar in Mpls, they barely mentioned it.

    I wasn't sure whether I should post this, but it's good to look at both sides before we make such an important decision. I know others on this board are still cancer free after two years so weigh your options. I'll be praying for wisdom for you.

    thank you
    Thank you for sharing your experience. Yes, it been hard making a decision, our fear is just that that if we were to go the Zevalin route we risk further issues down the line. Plus being a heart patient is also a concern. Again that you so much appreciate your frankness.

    God Bless.
  • Danco_man
    Danco_man Member Posts: 14
    #5
    Faith_ said:

    thank you
    Thank you for sharing your experience. Yes, it been hard making a decision, our fear is just that that if we were to go the Zevalin route we risk further issues down the line. Plus being a heart patient is also a concern. Again that you so much appreciate your frankness.

    God Bless.

    Roller Coaster Ride
    Faith- Just wanted to say I know exactly how you feel. I've been riding the same roller coaster trying to decide whether it's better to go on Rituxan maintenance or have a SCT. Either way I'm having cells collected (tomorrow actually). I find it just amazing that these difficult decisions need to be made by patients like us without the benefit of having medical backgrounds- simply because there are so many differing treatment options now available and very little consensus on which are the best. As much as I think this is a good thing (the many options)...it certainly hasn't made it any easier for us laymen to know what the right choices are. Good luck with your decision.
  • hilde451
    hilde451 Member Posts: 229 Member
    #6
    britta said:

    DECISION
    Hi Faith,

    I haven't been on this board for quite some time, but I was in the same position as you 16 months ago. I was back and forth and finally decided on the Zevalin. Hindsight, wish I would have gone with the rituxan maintenance. My cancer had returned to the same spot is was before and right now we are in a watch and wait game because it is in such a position they can't get a good enough sample to biopsy. My doctor told me that I could have Zevalin more than once, but I found out that isn't true, it's a one time deal, so maybe it should have been saved for later on. I also have developed very painful arthritis. I saw the nurse who administered my Zevalin a few weeks ago and asked her if there was much demand for the Zevalin and she said they hardly ever get a call about it. At a recent seminar in Mpls, they barely mentioned it.

    I wasn't sure whether I should post this, but it's good to look at both sides before we make such an important decision. I know others on this board are still cancer free after two years so weigh your options. I'll be praying for wisdom for you.

    Hello Britta
    I was diagnosed with Follicular NHL in 04 had surgery and radiation treatments.
    Well it came back in O9 and was in my bone marrow. And stage 4.
    Did 8 treatments of R-Chop. and then the Zevalin December 23,09.
    So have been through the ringer with it all. I am just wondering about all of it. Have not felt good since. But will be doing my cat scan Feb. 3.
    So will see what it says. I just sometimes think that once you have this it will stay away so long and then you are always waiting. Have lots of joint pain also.
    I wish you a lot of luck and Happy New Year. Hilde
  • Ann Marie 2012
    Ann Marie 2012 Member Posts: 1
    #7
    Roller coaster ride trying to decide
    Hello, I am new here, but have done the ratuxamab one week and Zevlin the following week back in Dec of 2010. By February 2011, I was very weak. My platelets were down to 3 and so wasn't my red cell count.

    I was scared..had to have 3 transfusions of Platelets and 3 of blood. My platelets are still at 106. Still am tired a bit. I have to push myself.

    I'm waiting to get a pet scan scheduled. They also wanted to do a cats scan, but I was concerned about that due to my kidneys.

    Due your research and see whats best for your health and well being

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