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low-grade non-Hodgkins

RandyinFlorida
Posts: 2
Joined: Jul 2007

I was diagnosed w/ low grade non-Hodgkins lymphoma stage IV over 4 years ago and have had 2 Rituxan treatments. Now have severe bone pain but all of my scans and labs look ok. Anyone else experience this?

Djhodan's picture
Djhodan
Posts: 5
Joined: May 2008

Hey i haven't known anyone to get Rituxan..I have been clean for 16 years with follicular non-hodgkins lymphoma..Mine is the small and medium cells... I just got Bexxar Friday and feel tried but not sick..Thank you God..I went through chemo 16 years ago with chop and it was terrible..You have to have less than 25% in your bone marrow to get this..I hope it work's and if so i will pass the word on to other's..Hope your bone pain get's better..

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Djhodan
Posts: 5
Joined: May 2008

Has anyone had Bexxar for the treatment of this cancer non hodgkins..I got it 3 months ago and i'm waiting for a pet scan to see if it worked or not..My blood count has done well and would love to talk to someone who has tried this...Debbie

dixie1
Posts: 7
Joined: Oct 2006

I've had Rituxin several times and never got bone pain from it, but everyone is different. I do have a bad reaction to Rituxin, so they have to put me in the hospital every time for chemo because they have to run the Rituxin very slowly into my system otherwise I get severe pain all over, chills, headache. Once they get that settled down with medication, I'm okay. I've had NHL for 8 years.

Phil F
Posts: 8
Joined: Feb 2009

Hi, I'm using my husband's site, I had NHL stage IV in May 2005, I recieved CVP and Retuxin, four treatments and I was in remission. I still had Retuxin every 6 mos for two years. January 2009 my cancer came back. The onco said I could do another round of chemo or try Bexxar or Zevelin treatment. I researched both and decided Zevelin was better for me. I had it March 12th 2009. I never had any trouble with it at all until 4 weeks later when my blood counts dropped dangerously low, which is expected after the drug. I had 20 Nupigen shots, 3 red blood cell shots (can't remember the name), and 5 blood transfusions. My counts started coming back up, and I was doing good. It's now July and my counts started dropping again, has anyone else experienced this? I've decided against shots and transfusions. I am hoping my body will start working again and correct this problem. I have a blood test every two weeks to monitor this. I really don't have pain except in my back when I do too much. I feel very fortunate that I am doing so well. Any comments would be appreciated. Jeri

grannyof11
Posts: 6
Joined: Jul 2009

Hi Jeri, I'm new to this site just today. I've been reading posts and have realized that there seems to be a common thread with the treatments we've been getting. I too have "reallllly" bad back pain and have been diagnosed with degenerative disk disease, arthritis, bulging disks, and something else(can't remember at moment..lol) Of course all this didn't appear until after I received 7 months of "CHOP" treatments, and then after it did appear, I've received 12 doses of radiation and over 2 yrs worth of rituxan treatments. It's just unfortunate that we as survivors of cancer have to endure such pain after receiving treatments that are meant to make us well. As to your ? about your Zevelin treatments, I can't offer any assistance there other then to say good luck with your treatments and I hope all goes well and your blood counts return to normal. I know it's not comforting to know your blood counts are dangerously low resulting in stays in the hospital. It's scary enough having cancer alone, let alone all the uncertainties that follow, plus the things you find out after you've had your treatment that the doctors failed to tell you in the beginning. Like I just found out on my last onco visit that them "CHOP" drugs can and have been known to cause Luekemia later on in life. I did not know that and don't know if knowing it would have altered the course of my treatments. But I'm the kind of person that would like to know these things up front so I can make informed decisions, not partial ones. This might be something that us that are having pain in our bones keep a close on eye and report our symptoms to our doctors promptly. Good luck Jeri with your recovery and may god bless you. Karla

donald51's picture
donald51
Posts: 60
Joined: Feb 2008

Hi Jeri. I have spoken with your husband before and it is nice to meet you. I had zevalin back in June 2008. My counts never did drop so low as to create a problem for me. I saw my onc just last month and while getting my vitamin R (rituxin)I got a copy of my blood work from that morning. I noticed my red and white count was low so when I did see him I asked why? He said that the zevalin will keep your red and white counts low for some time but, all the others such as Hgb, Hct , Mcv and such are good and thats what matters. It wasn't that low from the normal range anyways. I hope that yours is constantly improving. Maybe thats why every time I look into a mirror it appears that everyting wobbles for the first second or two. Other than that I am doing fantastically GREAT! It is my hopes and prayers that you too will be shouting the same words really soon.
Stay strong and positive

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