• GregP_WN's Avatar

    GregP_WN wrote on Joshwa's wall

    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 with 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 database 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

  • Joshwa's Avatar

    Joshwa shared an experience

    Other Care

  • Joshwa's Avatar

    Joshwa shared an experience

    Oh No (Cancer has spread/Metastasized): May 2018 and I started to feel funny, bloating, cramps in my upper abdomen. It persisted for a few weeks and I contacted my PCP... Emailed my heamotologist and she recommended I come in earlier than my first scheduled six month CT follow up. Had bloods and PET CT which seemed to be clear at first. She checked my glands and felt my abdomen and found nothing remarkable. Told me I had gas from my high fiber diet... Two days later I got the call and she told me they found a new hyper metabolic node(s)... Para aortic. In my upper left abdomen. Exactly where I had been complaining about cramps. It's small. Apparently, "too small for me to notice." About 1 cm. Yet, somehow I knew something was up?!?! Report, highly suspicious for new active site of lymphoma. Of course, the difficulties of distinguishing sarcoidosis and lymphoma make it impossible to say. I have sarcoidosis thoughout my pelvis and spine, with chronic reactive nodes in my groin, along with suspected (not confirmed) pulmonary sarcoidosis.

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    Joshwa shared an experience

    Radiation (External radiation ): Difinitive Radiotherapy December 18th 2017 to January 8th 2018, roughly... Had my mask made the same day we decided to go for radiation. It would be 30Gy over 17 days. Minimal skin irritation but I was proactive with natural remedies that worked excellently. The nurses were amazed how well my skin took it. Dry mouth, yes... Bad taste in my mouth, oh yes!!! Metallic, tasted like my mouth was bleeding. Minor throat irritation. Lozenges and life savers were key.

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    Joshwa shared an experience

    Decision Point (To radiate or not to radiate.... December 2017): Staging still inconclusive with so many areas of PET CT lit up several weeks after Rituxan. Drs suggested radiotherapy because they believed, but couldn't say for certain that the lymphoma was likely isolated to my left neck. Had a second opinion at Dana Farber, favored radiotherapy. Met with radiation Onc at DHMC who left the ball completely in my court as to what should be done... A difficult decision but we were optimistic for early stage, radiotherapy hope for cure.

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    Joshwa shared an experience

    Drug or Chemo Therapy (4x Rituxan ): October 2017 began series of 4x Rituxan infusions (once a week for four weeks). Drove myself there and back. Super sleepy from Benadryl and then super wired from prednisone! A roller coaster of energy crashing a few days after each time.