My first post .... just signed up

Greetings from Kansas City. I am a 67 year old man who was diagnosed 15 months ago with both CLL and CTCL (a form of non-Hodgkins lymphoma). My doctors in KC, as well as those at MD Anderson, have said this combinations is so unusual that they really have no similar cases in their database. Anyway, I feel pretty good and am on W&W for the CLL. For CTL, I get narrow band uvb treatment 3 times a week. That is about like a tanning bed :). I stay positive most of the time, but I'll admit to sometimes feeling like the "other shoe is about to drop."

Thanks for the insights from all of you!

Ron

9 Replies

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  • Welcome Ron,

    greetings from Wales in the UK. Good to have you join in and contribute to our community.

    NHL seems to have a number of different diseases cll being one of them. I had never heard of anyone having two different types either. So pleased you feel good most of the time, long may it continue.

    Best wishes

    Bubnjay1

  • Hi Ron

    Welcome from West Midlands Region of uk!

    Don't hesitate to ask any questions you have although you may wish to flag these as community members only when you post for privacy reasons.

    We are all members of the club and here to help if we can

    Geoff

  • Ron,

    I had to educate myself on CTCL. I must say it was quite interesting. I'm surprised I had never heard of it. Sounds like you have great doctors and an exceptionally good attitude. Enjoy every day. Sally

  • Hi Ron and welcome. Lots of good advice to be found here. Also, many good links to websites with great information. Sounds as if you manage to stay upbeat most of the time, that's all any of us can do. If I'm feeling low, I dip in here and find that it helps. We keep each other going when, try though they might, our lovely friends and family just don't really understand. Peggy

  • Welcome Ron. I hope you find lots of information and support on here. Having your treatment three times per week must take up a lot of your time. I hope you don't have too far to travel for it. I look forward to hearing how you get on and hope you continue to feel well and positive.

    Best wishes

    Lyra

  • Hi Ron ,

    I'm from KC too and I was just diagnosed in January. Are you going to the University of Kansas Cancer Center? I can relate to waiting for the other shoe to drop. I am hopeful that it's a feeling that goes away with more time.

  • Thanks to all for the encouraging responses. Yes, Aquafinn, I go to the KU Cancer Center for my CLL. Since I am in W&W, I just go every 90 days. My doctor is Dr. McGuirk, who I think is excellent. I go to the KU hospital/Medical Center for my CTCL treatment 3 times a week.

    Overall, I am super lucky to be close to such a well regarded cancer center. No one knows what the future will bring, but for now I feel just the same as always. I went to MD Anderson last April for a second opinion, and they confirmed everything KU had diagnosed. My only concern is that no one can definitely explain the relationship between my two cancers. Both are cancers of the blood but one is focused on B cells and the other involves T cells. Maybe I'll be on the cover of some cancer research magazine? :)

    Ron

  • Hi Ron, Greetings from Eugene, Oregon today (I usually live in San Diego now). There are many to support you and it seems you have good doctors. Besides this resource visit the cll list on acor.org (there may be members near you. And our site, patientpower.info/cll We do have ask the expert sessions and you can write in. As for your outlook, just keep trucking. I do and it's been 19 years since cll diagnosis. All the best!

  • Hi from sunny Hampshire, Uk.

    I'm glad you've found us. We're all here to help - be it with information, sound advice, support or a listening ear. Keep the posts coming.

    All the best,

    C

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