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    Homans wrote on CookiesMom's wall

    Hello,
    Has your doc(s) ever said anything about CAR-T treatment. I was stage 4 with Large B cell ‘Double Hit’ Lymphoma, and it put me into remission over a year ago. I’m coming up on 2 year scan in June. No problems yet. I read they have use it on your cancer. They don’t do it at all treatment centers. I got mine at KU in Kansas City.
    Best Regards, Steve H.

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    CookiesMom wrote on CAS60's wall

    Do U know your sub-type of NHL? If not, ask as there are anywhere from 60-90 different types of NHL. And each in itself is its own type. Ask your Dr. what your sub-type is as there are many 'online' groups and other information specific to sub-types you could join and learn from as well. Welcome to your new journey.

    Also, you might consider asking for a 2d opinion specialist referral for your sub-type before you start treatment if possible (or soon after you start). If no other reason than to get further information, maybe explained differently. Also, I found out that I trusted my hema/onc. more after learning he actually did know what he was doing (as I have a rare cancer with few actually knowing much about the sub-type). Changed my treatment plan as well based upon what specialist saw and what his potential concerns at the time were...as an example.

    It will be lots of visits, tests, treatment will come thru the next months. You will learn the words, the labs, different things. And....don't be afraid to ask about side effects of treatment and if you are online good, be careful of researching. Look at copyright dates (so much has changed across all types in the past few years alone--with all the new drugs and treatments available). There are some scary things out there. You don't want to get sucked down or into. Ask your own Dr. and if you do get a 2d opinion, that Dr. as well, what sites are good for you to do research on and get information from. So much out there can be harmful. So, be careful.

    U CAN do this. B R E A T H E.

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    CookiesMom shared an experience

    Drug or Chemo Therapy (Rituxan - & on Imbruvica Daily 420 mg): Minor issues with both. Luckily, handled well & tolerable.

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    CookiesMom shared an experience

    Oh No (Thought it was pneumonia. NOPE.): Needed 6 blood transfusions as blood levels at 4.1 super low. Secondary cold agglutinins doing the PacMan thing w/my blood cells.

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