Sunni1ib

Activity

  • Gymmom
    Hi!! Didn't you have a scan last week? I think I remember you telling me you were having one the week of the 19th. How are you doing? I hope all is going well for you! Gymmom/aka Donna :-)
    September 2017
  • Gymmom
    Hi Sunni1ib, Welcome to WhatNext. I'm wishing you all the best. It looks like we have had some very similar experiences with stage IV dlbcl. What a journey. How are you doing these days? - Gymmom/aka Donna
    August 2017
  • icrazyhorse
    There is always hope for a cure. In November 2011, at the age of 65, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of August 14, 2017, she has been in complete remission for 17 months. Current CAR-T clinical trial data shows that once a follicular lymphoma patient achieves a complete remission they stay in complete remission. There is more information on CAR-T for fNHL patients and people considering CAR-T at https://fnhlben.wordpress.com/
    August 2017
  • GregP_WN
    Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

    https://www.whatnext.com/conditions/cancer/non-hodgkin-lymphoma-nhl

    There are also subtypes listed on this page to narrow down the type of cancer to match your dx. Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall. Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also.

    Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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    GregP 3X Survivor
    WhatNext Community Mgr.
    August 2017
  • DaveWaz

    Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

    Wishing you the best.

    David
    Founder, WhatNexter
    August 2017