Had the Zevalin!

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Comments

  • merrywinner
    merrywinner Member Posts: 626 Member
    britta said:

    Hi Mary, Hilde, Yogi, Don and Everyone
    Hi,

    I haven't seen you here for awhile and wondering how you are all doing? Mary, you must be out a month now from your Zevalin. Hilde, you must be out nearly 5 months, bet that's a good feeling - and you will be seeing your onc in June. Yogi, you must be out a week or two, how are you doing? And Don, we all know you are great and a good inspiration for the rest of us.

    I just took my last treatment of R-CVP yesterday, just have to finish the Prednisone for 7 days and I'll be done. Then to Mayo June 16 for a catscan and propably set up appointment for Zevaln, not definite yet, I'm still praying about it, but getting more comfortable, thanks to you guys and Betsy's website. By the way, I was telling my onc here about Betsy's book, and during my chemo, he came and and showed me a book one of his patients had just given him, it was Betsy'. Small world.

    Take care all of you and stay well and hope to hear from you.

    Britta!!!
    Good to hear from you and glad things are moving along even though all is not decided yet. I think that was the hardest part for me. I am 1 month out and pretty much just have the fatigue but I will deal with it. Feel better the last two days. Blood work is taking a little hit but they are not concerned yet. My white count was actually at the upper end of normal and my platelets which started at 200,000 are now 116,000. That is still good I guess. We will see what next week shows. So funny about your MD and the book. I guess it was meant to be. We will all manage to stay connected somehow. I go back to Mayo on the 27TH. I am hoping all is good. I'll keep you posted and you do the same. All the best. Mary
  • hilde451
    hilde451 Member Posts: 229 Member
    britta said:

    Hi Mary,
    I chatted with

    Hi Mary,

    I chatted with Betsy online and ordered the book, she said I'd have it by tomorrow so am looking forward to it. We can all relate to the title, so I'm sure she has a lot to share. Hope you are feeling good and your counts stay up. I was wondering how long it was between finishing the R-CHOP and starting the Zevalin. They wanted me to start within a month of finishing chemo, and I'm afraid if I go in with low counts, they're going to really go down. Oh, and by the way, I saw Donald had mentioned not eating sugar cereals, I noticed Fiber One Bran cereal and "0" sugars in case you are interested. Did they tell you at Mayo to stay away from plants, animals, etc., and to eat organic food, or is that somehting others have been told. Also, Hilde said she was on antibiotics for the first 2 months, are you also? Just wondering as I am allergic and the only thing that I haven't had trouble with is Cipro. So much to think about !

    Notice you are an early riser, I'll just be going to sleep about the time you get on here. Talk to tomorrow.

    Stay healthy!


    Britta

    Hi Britta
    If you can tollerate the Cipro that is what your dr. most probably will do. I would think.
    I am feeling much better , with just a few issues. Still have night sweats. But I am
    dealing with things much better. I hope I have not put a dampner on the Zevalin that was not my intention. I was dealing with a lot more . I was also stage 4 and had bone marrow involvement. I hope that you and your dr, decide what is right for you.
    My pet scan in February was good. So maybe it is working. I just wonder if there is anyone that ever had the Zevalin that relapsed. I know it is like looking at the dark side. But can not help but wonder. But I feel this way if it buys me 20 years I will be thrilled. I am already older so that is another worry. I am 64. Hope you all feel well.
    Hilde
  • hilde451
    hilde451 Member Posts: 229 Member
    britta said:

    Hi Mary, Hilde, Yogi, Don and Everyone
    Hi,

    I haven't seen you here for awhile and wondering how you are all doing? Mary, you must be out a month now from your Zevalin. Hilde, you must be out nearly 5 months, bet that's a good feeling - and you will be seeing your onc in June. Yogi, you must be out a week or two, how are you doing? And Don, we all know you are great and a good inspiration for the rest of us.

    I just took my last treatment of R-CVP yesterday, just have to finish the Prednisone for 7 days and I'll be done. Then to Mayo June 16 for a catscan and propably set up appointment for Zevaln, not definite yet, I'm still praying about it, but getting more comfortable, thanks to you guys and Betsy's website. By the way, I was telling my onc here about Betsy's book, and during my chemo, he came and and showed me a book one of his patients had just given him, it was Betsy'. Small world.

    Take care all of you and stay well and hope to hear from you.

    Hi Britta
    Hope you are going through your treatment with small or no problems.
    I am doing pretty well. I wont say I dont have days of problems. But have other health problems , which makes me wonder about everything. But as much as I read about the Zevalin
    was not too bad at all. I was scared at first but since my pet scan in February it was clear. So I am happy for sure. So hopefully my cat scan June 2nd will be just as good.
    I wish you all the best. And if you are offered Zevalin I would surley go for it.
    Well Britta I wish you well. Hilde
  • britta
    britta Member Posts: 107

    Britta!!!
    Good to hear from you and glad things are moving along even though all is not decided yet. I think that was the hardest part for me. I am 1 month out and pretty much just have the fatigue but I will deal with it. Feel better the last two days. Blood work is taking a little hit but they are not concerned yet. My white count was actually at the upper end of normal and my platelets which started at 200,000 are now 116,000. That is still good I guess. We will see what next week shows. So funny about your MD and the book. I guess it was meant to be. We will all manage to stay connected somehow. I go back to Mayo on the 27TH. I am hoping all is good. I'll keep you posted and you do the same. All the best. Mary

    Zevalin
    Hi Mary,

    Congratulations on the twins being born, what a blessing for you and your family. Funny, by best friend just witnessed the birth of her twin grandchildred on May 15 and called yesterday, proud Grandma!

    I guess I have pretty much decided to take the Zevalin, but I have some questions for you about treatment at Mayo, could we talk off-line. If you could write me at djhansen@live.com, I'd appreciate it.

    Have a great day.

    Britta
  • merrywinner
    merrywinner Member Posts: 626 Member
    britta said:

    Zevalin
    Hi Mary,

    Congratulations on the twins being born, what a blessing for you and your family. Funny, by best friend just witnessed the birth of her twin grandchildred on May 15 and called yesterday, proud Grandma!

    I guess I have pretty much decided to take the Zevalin, but I have some questions for you about treatment at Mayo, could we talk off-line. If you could write me at djhansen@live.com, I'd appreciate it.

    Have a great day.

    Britta

    Yep
    I'd be happy to. I'll get to you very soon. With those babies being born it's been a little crazy. My daughter went home yesterday but not the babies quite yet so that was hard. They were six weeks early but are both doing really well. I will talk to you soon. Mary
  • hilde451
    hilde451 Member Posts: 229 Member
    rdonald said:

    Hello. My name is Don and I am a 5 year survivor of NHL. I possess a wealth of information on the subject of Follicular NHL. Unfortunately I don't have the time today to share much more than to suggest to Britta, that she take the Prednisone as early in the day as possible. Doing that will help with the "sleeplessness". I'm 68 years old. I lost my wife of 38 years to cancer in 2001. Since that time, I have been active as a volunteer at Karmanos Cancer Institue (An NCI hospital) and our local Gilda's Club. Last year because of 2 back surgeries, I resigned from the Board of Directors at Gilda's. However I'm still active on the Patient & Families Advisory Committee at Karmanos. In Michigan where I reside, we are fortunate to have 2 NCI hospitals. The other is the University of Michigan. I chose Karmanos because they do more stage one clinical studies. I Have had over 60 hours of training as a 'mentor'. If there is anyone on this board who feels like they would like to ask a question, I would be happy to respond with an answer, if possible. Don.

    Hi Don
    I was first diagnosed with follicular Non-Hodgkins Lymphoma in O4, Had surgery on the left side of my neck and they took out the gland and inside my cheek on that side and then did 20 Radiation treatments.
    Was home free for one week away of 5 years. Then it came up on the right side of my cheek
    So had surgery again to take out the gland on the right side on my cheek and nodules in my parotid glan. Well I was then diagnosed with stage 4, and had bone marrow involvement.
    Did 8 treatments of R-Chop and then two rituxin , and on Dec. 23 I did the Zevalin.
    My blood work went down pretty far. My wbc was just 1.1 and everything else went down really far like my platelets were only 15 so had a Neulasta shot and then it came up slowly. I dont know where I am at this point till June 9th. I have had a sore throat for a week now and pain in the corner of my jaw by my ear. Naturally I worry what this is.
    I am truly sorry that you lost your wife.
    What I would like to ask is about what negative stuff you have heard about the Zevalin?
    thank you so very much,
    Hilde
  • britta
    britta Member Posts: 107

    Britta!!!
    Good to hear from you and glad things are moving along even though all is not decided yet. I think that was the hardest part for me. I am 1 month out and pretty much just have the fatigue but I will deal with it. Feel better the last two days. Blood work is taking a little hit but they are not concerned yet. My white count was actually at the upper end of normal and my platelets which started at 200,000 are now 116,000. That is still good I guess. We will see what next week shows. So funny about your MD and the book. I guess it was meant to be. We will all manage to stay connected somehow. I go back to Mayo on the 27TH. I am hoping all is good. I'll keep you posted and you do the same. All the best. Mary

    Good Luck today
    Hi Mary and all,

    Know today is when you're going for your checkup. Will be thinking about you and praying for a good report.

    Tell us some news about your new grandbabies too. Boys, girls, or one of each, and how big, and how cute. We all need a some cheery news once in awhile.

    Have a good day and write and let us all know how you are.

    Love to everyone.

    Britta