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    User: CancerNews

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    User: Chris

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    spring started following

    User: Allyssa

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    spring wrote on Allyssa's wall

    Dear Alyssa,
    I had stage one follicular lymphoma, too. I was 49, now turning 51 in March. My treatment was external radiation, no chemo or other drugs. I am right here if you want to talk about it. Do your docs want to treat it?

    2 Comments
    • Allyssa's Avatar
      Allyssa

      My onc prefers just watch and wait since all my blood work and scans show I am very heathy right now with no symptoms. Yet I feel like ticking time bomb right now. I'm hoping by the time I do need treatment they will have a non toxic version approved. I can't stand the thought of making my NHL better by damaging healthy organs and tissues.

      about 4 years ago
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      Allyssa

      They found it in nodes all over my body so radiation is not an option.

      about 4 years ago
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    spring posted an update

    Hi,
    I am under a lot of stress right now. After several months of conservative treatment for bilateral capel tunnel, I am recommended for release surgery in both hands. While being seen and worked up for that by 4 different surgeons, (to get a consensus), I had an MRI of my head, as abnormal pituitary activity is sometimes associated with carpel tunnel. They found something abnormal, and i am going back for further studies on Friday. Although I was stage one, and my whole team was convinced that i am a candidate for cure, now I am sitting here wondering if it is the lymhoma, or a different cancer! Maybe it is benign. I am repeating over amd over to myself, we will handle it whatever it is. I am quite flattened by this, and have been thinking about my will all night. I have to be so dramatic. Today is the first meeting with the first hand surgeon. I will take my violin and play for all 4 of the hand surgeons this week, so that they can see me in action, and see the seriousness of cutting my hands.

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      I can understand your concerns. Sorry for the predicament. I am with you on keeping your mind around the thought that no matter what comes, you will tackle it head on, beat it, then get on with the next most important thing. You have to get healthy first, then worry about everything else second.
      We all wish you the best! Let us know how your meetings go.

      about 4 years ago
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      spring

      Hi,
      I didn't realize that you had written to me. It is very kind of you. The carpul tunnel is not gone, now one year afte diagnosis, and we have no consensus on what to do, other than stop playing. I plan to go to a hand surgeon in NY. Interestingly, with the lymhoma diagnosis, I had the usual blood work, which did not reveal an alarmingly low b12 level. Mine was 275, which is low end OK. However, since I had parasthesia in both hands and feet, and the carpul tunnel together, my neurologist suspected a return of the lymhoma in the bracheal plexus. It wasn't lymhoma, just a grave lack of b12, which can lead to dementia! So, $15000 worth of b12 shots later, I am no longer b12 deficient, $5000 for 2 shots of iron, so I am not iron deficient, which can cause tingling in the hands, but i still have the carpul tunnel. I suppose I should be greatful it wasn't lymphoma.
      This brings me to such a shocking story that i know you will enjoy it. When they scanned, me for the bracheal plexus, they threw in several views of the head on MRI, just for good measure. The neuroradiologist, trained at Yale, who read it, claimed that he saw a meningioma of the pituitary. So, for a whole week, we had to redo it twice, and wait for another guy to read it, and get te firstThe second guy won out, but what a week! guy to retract his opinion, as the second guy didn't agree. The first guy did retract, but the facility still charged me! Unbelievable! I have since learned that neuroradiologists can and do disagree all the time! What a crazy world post cancer treatment is. Now, everything is looked at through the maybe it is lymhoma lens, and i ell you, I don't like it one bit!

      over 3 years ago