Not feeling too great

hilde451
hilde451 Member Posts: 229 Member
First of all I am wondering about Donald51 and how he is doing. I am having so much joint pain. I wonder if anyone else has had that experience after doing Zevalin.
Blood count are still down and I got a shot of Neulasta last Wednesday.
Have to do my scan in two weeks.
Hope you all are doing fine. I wonder if Zevalin has ever not worked for anyone.
It seems like I worry about this all the time.
Hilde

Comments

  • moftexas
    moftexas Member Posts: 13
    Zevalin
    Hey Hilde451. I did my Zevalin at the end of September 2009. I didn't have joint pain from the Zevalin, but had lots of issues with fatigue and extremely low blood counts for quite a while and ended up with numerous transfusions. Neulasta worked for me, but that can cause bone pain. Did you start having the pain after or before the Neulasta?

    I'm not sure yet if it worked. I was in remission when I got it, but took it to keep the Lymphoma from recurring. It may take years to know this. I thought it was very hard, so know you're not alone. It was a much tougher treatment than I figured.
  • hilde451
    hilde451 Member Posts: 229 Member
    moftexas said:

    Zevalin
    Hey Hilde451. I did my Zevalin at the end of September 2009. I didn't have joint pain from the Zevalin, but had lots of issues with fatigue and extremely low blood counts for quite a while and ended up with numerous transfusions. Neulasta worked for me, but that can cause bone pain. Did you start having the pain after or before the Neulasta?

    I'm not sure yet if it worked. I was in remission when I got it, but took it to keep the Lymphoma from recurring. It may take years to know this. I thought it was very hard, so know you're not alone. It was a much tougher treatment than I figured.

    Hello
    Thank you for writing back. I am happy to see someone else that did Zevalin. I am dealing with very low blood counts. I did get a neulasta shot two weeks ago. Then the following week my blood count went up and now it went back down. I dont understand it.
    I dont know why the joint pains.
    I do another blood test next Wednesday and then Thursday I go for my cat scan.
    Personally I dont know if I would ever do the Zevalin again.It sure was a scary treatment to me. I suppose we will see what happens . We of course hope for the best.
    I wish you all the best. On top of everything else My Mother died of colon cancer last night. It was so upsetting to see her so badly off.
    Hilde
  • JoanieP
    JoanieP Member Posts: 573
    hilde451 said:

    Hello
    Thank you for writing back. I am happy to see someone else that did Zevalin. I am dealing with very low blood counts. I did get a neulasta shot two weeks ago. Then the following week my blood count went up and now it went back down. I dont understand it.
    I dont know why the joint pains.
    I do another blood test next Wednesday and then Thursday I go for my cat scan.
    Personally I dont know if I would ever do the Zevalin again.It sure was a scary treatment to me. I suppose we will see what happens . We of course hope for the best.
    I wish you all the best. On top of everything else My Mother died of colon cancer last night. It was so upsetting to see her so badly off.
    Hilde

    so sorry
    Im so sorry for your loss , Hilde. I hope your scan is perfect . May God wrap his loving arms around you in this time of grieving Joanie
  • hilde451
    hilde451 Member Posts: 229 Member
    moftexas said:

    Zevalin
    Hey Hilde451. I did my Zevalin at the end of September 2009. I didn't have joint pain from the Zevalin, but had lots of issues with fatigue and extremely low blood counts for quite a while and ended up with numerous transfusions. Neulasta worked for me, but that can cause bone pain. Did you start having the pain after or before the Neulasta?

    I'm not sure yet if it worked. I was in remission when I got it, but took it to keep the Lymphoma from recurring. It may take years to know this. I thought it was very hard, so know you're not alone. It was a much tougher treatment than I figured.

    Zevalin
    You are so right it was a harder treatment to me also. I seem to have muscle pain in my arms and legs. some days worse then others.
    I will give it a bit longer then go to my regular dr. I worry about this.
    It does not feel good.
    Hope you are feeling good. I just wonder What the lingering effects are of all of this.
    Just makes you wonder.
    Glad to hear from someone else that did this. I did my Zevalin December 23,09
    Not far from yours.
    Thanks for writing. Best wishes , Hilde
  • moftexas
    moftexas Member Posts: 13
    hilde451 said:

    Zevalin
    You are so right it was a harder treatment to me also. I seem to have muscle pain in my arms and legs. some days worse then others.
    I will give it a bit longer then go to my regular dr. I worry about this.
    It does not feel good.
    Hope you are feeling good. I just wonder What the lingering effects are of all of this.
    Just makes you wonder.
    Glad to hear from someone else that did this. I did my Zevalin December 23,09
    Not far from yours.
    Thanks for writing. Best wishes , Hilde

    I've had neupogen shots
    I've had neupogen shots since and those give me some bone pain, but I don't think it is directly related to the Zevalin. I'm finally past most of the side effects of it, so it's now a waiting game to see if it works. The continued Rituxan is giving me some side effects. I would have to really think long and hard about doing Zevalin again, but won't worry about it since it's a one time thing. The doctor told me they won't do it more than once. You should hopefully start feeling better soon.

    The thing that I find hard is not knowing what pains or problems are treatment related. I worry about that all the time.
  • hilde451
    hilde451 Member Posts: 229 Member
    moftexas said:

    I've had neupogen shots
    I've had neupogen shots since and those give me some bone pain, but I don't think it is directly related to the Zevalin. I'm finally past most of the side effects of it, so it's now a waiting game to see if it works. The continued Rituxan is giving me some side effects. I would have to really think long and hard about doing Zevalin again, but won't worry about it since it's a one time thing. The doctor told me they won't do it more than once. You should hopefully start feeling better soon.

    The thing that I find hard is not knowing what pains or problems are treatment related. I worry about that all the time.

    Zevalin
    I am also feeling the same way. I am still trying to get my blood work to normal again. I did have a neulasta shot. But it is slowly coming up.
    I dont know either if I had done this Zevalin again either. I just wondering if I have bad arthritis , I am doing to my primary care dr. And have them do a blood test to see what kind of Arthritis I have. Something is not right with the way I feel .
    I wonder if anyone who has done this ever relapsed?
    But hope you feel well. Thank you for posting on here.