DonnainRI

Activity

  • papabill
    Thanks for the encourgement...but sounds as if while you know several who did well on Keytruda, you may know of others who did not fair as well. Keeping my fingers and toes crossed now for both of us as we strive to keep the faith.
    June 2018
  • Lundmusik
    Have you heard about your Pet scan/MRI results?
    May 2018
  • Lundmusik
    I’m excited for you with your mekinist/trafinlar decision. I wish you the best. I’m taking my first dose of the combo tonite. I’ll be anxious to know how both of us do on side effects.
    May 2018
  • Lundmusik
    Since you have the Braf gene mutation, have you thought about targeted therapy. I’m starting that in the next couple weeks. It’s an added weapon for those of us with the mutation.
    May 2018
  • nursevenner
    Hi and thank you! My daughter had a a brain MRI which was good and a CT scan of thorax and abdomen. This showed haziness, increase in size and number of lymphy nodes in left axilla. PT scan has never even been mentioned:( Her WLE and SLN was done on April 13, 3 lymph nodes "lit up br ght blue", however, he only took out one?????? This one showed 2% melanoma in subcapsular level of capsule..(whatever that means) she is now going in Friday for complete node dissection. I'm wondering if he took out those other 2 originally what would still be growing? I'm so scared for her with mitotic rate of 25, nodular and ulcerated but praying it didn't get too much into the other nodes....4 weeks in between.....You give me hope as you started your journey close to her age now and still here to help!!!! Thank you!!!!!! xo
    May 2018
  • SandiA
    Hi! I saw your question on scan anxiety. I am also a melanoma fighter/survivor. I finished treatment July 2016 and so far clean scans. I just wanted to stop by your wall say hi and see how you are doing. Sandi
    April 2018
  • Skyemberr
    I just wanted to drop by your wall to let you know that I support you and I am very glad you're here with us.I am stage IV Rectal cancer. Every scan is an adventure.
    Clinical trials are coming for all of us. We just have to hang in there.
    April 2018
  • Lundmusik
    Thanks for your feedback about therapy, and congrats on your continued good fortune and results
    April 2018
  • geekling
    Hello. How are you this morning? Resting easy, I would hope and trust. I want you to know that there are always exceptions.

    "... care what stage you are, or what type of cancer you have. Learning you have cancer is a frightening experience"

    I wasnt frightened. I was relieved. I had been told by dozens of doctors that I was simply fine. I just needed to pop a happy pill.

    Over the course of 13 years, wanting to stay alive; knowing something was attacking me ... and that it was insistent, I looked into a whole lot of odd ways and roads seldom taken. Had I known what I was fighting against, I might have had a chance to not only stay alive, which I did, but to possibly thrive which I still hope to acomplish.

    The Universe had me to finally break a big toe while I ran a business to help care for my Mother. Stuck in a cast, unable to walk for several months but still responsible for all else I had taken on, I felt sorry for myself. I took solace in what comfort was available... Stoneyfield Farms Double Dutch Chocolate Ice Cream.

    With it, I managed to gain 65 pounds. The tumor grew along with the rest of me. A doctor surgeon who had refused the year prior offered to remove it because "it must be uncomfortable." Right, lol, as though having a small cancer is somehow acceptable until it grows some.

    So. You see. I was relieved when I chased the dastard down and heard him say "You have cancer. I didn't get it all. Find an oncologist." and he hung up the phone.

    I finally had the answer to a 13 year search.

    So. You see. I wasnt more frightened, more distressed thsn I already had been. I was relieved to know the face of the enemy. Now I could learn its weaknesses, rout it, and, by this note, you see I persist.

    Sorry for your troubles.
    March 2018
  • geekling
    Hello. How are you this morning? Resting easy, I would hope and trust. I want you to know that there are always exceptions.

    "... care what stage you are, or what type of cancer you have. Learning you have cancer is a frightening experience"

    I wasnt frightened. I was relieved. I have been told by dozens of doctors that I was simply fine. I just needed a be happy pill.

    Over the course of 13 years, wanting to stay alive; knowing something was attacking me ... and that it was insistent, I looked into a whole lot of ways and roads less seldom taken. Had I known what I was fighting against, I might have had a chance to not only stay alive, which I did, but to possibly thrive.

    The Universe had me to finally break a big toe while I ran a business to help care for my Mother. Stuck in a cast, unable to walk for several months but still responsible for all else I had taken on, I felt sorry for myself. I took solace in what comfort was available... Stoneyfield Farms Double Dutch Chocolate Ice Cream.

    With it, I managed to gain 65 pounds. The tumor grew along with the rest of me. A doctor surgeon who had refused the year prior offered to remove it because "it must be unvomfortable." Right, lol, as though having a small cancer is somehow acceptable until it grows some.

    So. You see. I was relieved when I chased the dastard down and heard him say "You have cancer. I didn't get it all. Find an oncologist." and he hung up the phone.

    I finally had the answer to a 13 year search.

    So you see I wasnt newly frightened. I was relieved to know the enemy and face it even more aggressively. Now I could learn its weaknesses and, by this note, you see I persist.

    Sorry for your troubles.
    March 2018
  • geekling
    Hello. How are you this morning? Resting easy, I would hope and trust. I want you to know that there are always exceptions.

    "... care what stage you are, or what type of cancer you have. Learning you have cancer is a frightening experience"

    I wasnt frightened. I was relieved. I have been told by dozens of doctors that I was simply fine. I just needed a be happy pill.

    Over the course of 13 years, wanting to stay alive; knowing something was attacking me ... and that it was insistent, I looked into a whole lot of ways and roads less seldom taken. Had I known what I was fighting against, I might have had a chance to not only stay alive, which I did, but to possibly thrive.

    The Universe had me to finally break a big toe while I ran a business to help care for my Mother. Stuck in a cast, unable to walk for several months but still responsible for all else I had taken on, I felt sorry for myself. I took solace in what comfort was available... Stoneyfield Farms Double Dutch Chocolate Ice Cream.

    With it, I managed to gain 65 pounds. The tumor grew along with the rest of me. A doctor surgeon who had refused the year prior offered to remove it because "it must be unvomfortable." Right, lol, as though having a small cancer is somehow acceptable until it grows some.

    So. You see. I was relieved when I chased the dastard down and heard him say "You have cancer. I didn't get it all. Find an oncologist." and he hung up the phone.

    I finally had the answer to a 13 year search.

    So you see I wasnt frightened. I was relieved to know the enemy.




    March 2018
  • Lundmusik
    Thx for your lovely remark about Frank. Actually the Llama only spit on me twice. You’ve been through a lot with your own melanoma and I wish you the best.

    Chuck
    February 2018
  • wngalvin
    My name is Bill Galvin and I am reaching out to you regarding two different studies. I participated in different studies for this recruiter before and he asked if I would be able to help identify people for two more studies.

    Study 1: looking for one individual who has Melanoma and after some sessions with Yervoy (or Yervoy and something else) came down with GI issues as a side effect.

    Study 2: I am looking for up to four people who have been diagnosed with Melanoma and who are on any of the following:
    opdivo and yervoy combo (preferred target)
    yervoy
    opdivo
    keytruda
    tafinlar or zelboraf

    If you qualify and are selected, you would receive $150.00 for a 60-90-minute interview which is done over the phone or the internet.

    if you are interested in speaking with me further about these studies please email me at studies 07 01 (all one word) at gmail

    If you know anyone else who may want to speak with me - please forward this information to them.

    Thank you
    Bill Galvin
    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/skin-cancer

    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.
    May 2016
  • 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
    April 2016