I actually know the person who sends out the links to the surveys. He lives in my community and his brothers are friends with my son. I feel a bit strange replying to the surveys because he knows who I am and I don't know if he is privy to my responses. I wonder if anyone else here in the same situation.
- katds
- York, PA
- Member Since Sep 2015
Their Diagnoses (1)
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- Patient: Follicular Lymphoma
- Patient Info: Newly diagnosed (has not begun treatment), Diagnosed: over 7 years ago, Female, Age: 62, Stage IV
- View this journey (9 Experiences)
Their Links
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katds asked a questionNon-Hodgkin Lymphoma (NHL)
Hey Everyone!
4 answers-
Mo62
I just wanted to say that I checked with 3 Oncologist about maintenance Rituximab. All said the studies on it are not up to date due to newer meds used for chemo. There wasn't enough data to continue maintenace. They left it up to me. if ypou are having side effects may have a second opinion?
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Schlegel
I stopped Bendamustine after two treatments because of extreme fatigue at a time when my seasonal job was in session. I then did four weeks of Rituxan followed by quarterly treatments, no problems. I went into remission after the four weeks, do not know if it it was from the Bendamustine or Rituxan. I stayed in remission 45 months.
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po18guy
An alternative may be Ofatumumab (Arzerra), which is the same class of drug as Rituxan, but more potent for a longer period of time. It is in clinical trials against various lymphomas and even against Graft-Versus-Host-Disease for transplant patients. Other than an initial infusion reaction, I have noted essentially zero side effects.
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katds shared an experience
Symptom Management: I can't believe how many Doctors I've been to in the last few months and I still don't think any of them get how bad I feel. I'm really frustrated.
about 4 years ago