azurliene
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

azurliene

Forum Replies Created

Viewing 5 reply threads
1 2
  • Replies
      • November 2, 2011 at 2:24 am
      azurliene
      Participant

      Thank you both – I really appreciate advice, the link and the list of treatment suggestions. The "tumor board" came and said their recommendation for the remaining tumor is "inconclusive" they don't know whether to recommend a 2nd craniotomy or gamma/WBR – we go tomorrow to discuss again. They were also able to get in for a 2nd opinion with MD Anderson in TX on the 14th so trying to decide whether to wait or not and to do surgery or radiation… I'll feel much better once we are able to (hopefully) get rid of this tumor…

      thanks again

      Aften

      • November 2, 2011 at 2:24 am
      azurliene
      Participant

      Thank you both – I really appreciate advice, the link and the list of treatment suggestions. The "tumor board" came and said their recommendation for the remaining tumor is "inconclusive" they don't know whether to recommend a 2nd craniotomy or gamma/WBR – we go tomorrow to discuss again. They were also able to get in for a 2nd opinion with MD Anderson in TX on the 14th so trying to decide whether to wait or not and to do surgery or radiation… I'll feel much better once we are able to (hopefully) get rid of this tumor…

      thanks again

      Aften

      • November 2, 2011 at 2:24 am
      azurliene
      Participant

      Thank you both – I really appreciate advice, the link and the list of treatment suggestions. The "tumor board" came and said their recommendation for the remaining tumor is "inconclusive" they don't know whether to recommend a 2nd craniotomy or gamma/WBR – we go tomorrow to discuss again. They were also able to get in for a 2nd opinion with MD Anderson in TX on the 14th so trying to decide whether to wait or not and to do surgery or radiation… I'll feel much better once we are able to (hopefully) get rid of this tumor…

      thanks again

      Aften

      • November 1, 2011 at 1:16 am
      azurliene
      Participant

      anybody? 🙁

      • November 1, 2011 at 1:16 am
      azurliene
      Participant

      anybody? 🙁

      • November 1, 2011 at 1:16 am
      azurliene
      Participant

      anybody? 🙁

      • March 12, 2012 at 8:05 pm
      azurliene
      Participant

      Karen,

      Thank you so much for your reply – I printed this and showed it to my Dad as an example. I know everyone experiences different levels of side effects, but I wishhe would at least give the drug a shot. So happy to hear you have had success with it and SO great to hear you are maintaining NED status! Wishing you continued success and goof health – thanks again!

      Aften

      • March 12, 2012 at 8:05 pm
      azurliene
      Participant

      Karen,

      Thank you so much for your reply – I printed this and showed it to my Dad as an example. I know everyone experiences different levels of side effects, but I wishhe would at least give the drug a shot. So happy to hear you have had success with it and SO great to hear you are maintaining NED status! Wishing you continued success and goof health – thanks again!

      Aften

      • March 12, 2012 at 8:05 pm
      azurliene
      Participant

      Karen,

      Thank you so much for your reply – I printed this and showed it to my Dad as an example. I know everyone experiences different levels of side effects, but I wishhe would at least give the drug a shot. So happy to hear you have had success with it and SO great to hear you are maintaining NED status! Wishing you continued success and goof health – thanks again!

      Aften

      • March 5, 2012 at 1:42 pm
      azurliene
      Participant
      Thank you all so much – re: those on the 5 day dosing schedule, does the nausea / fatigue go away almost immediately after the 5th dose? Thank you again so much – god bless
      • March 5, 2012 at 1:42 pm
      azurliene
      Participant
      Thank you all so much – re: those on the 5 day dosing schedule, does the nausea / fatigue go away almost immediately after the 5th dose? Thank you again so much – god bless
      • March 5, 2012 at 1:42 pm
      azurliene
      Participant
      Thank you all so much – re: those on the 5 day dosing schedule, does the nausea / fatigue go away almost immediately after the 5th dose? Thank you again so much – god bless
      • October 31, 2011 at 7:50 pm
      azurliene
      Participant

      Cristy,

       

      Thank you so much for taking the time to reply and for the info – I am already finding this forum is my outlet…I get consumed by reading the stories info and profiles, but I am so thankful to have the outlet for additional support and to lern of more current information and options. The general web and statistics were eating me alive – so refreshing to read some positive …and hopeful stories…

       

      Thanks again 

      • October 31, 2011 at 7:50 pm
      azurliene
      Participant

      Cristy,

       

      Thank you so much for taking the time to reply and for the info – I am already finding this forum is my outlet…I get consumed by reading the stories info and profiles, but I am so thankful to have the outlet for additional support and to lern of more current information and options. The general web and statistics were eating me alive – so refreshing to read some positive …and hopeful stories…

       

      Thanks again 

      • October 31, 2011 at 7:50 pm
      azurliene
      Participant

      Cristy,

       

      Thank you so much for taking the time to reply and for the info – I am already finding this forum is my outlet…I get consumed by reading the stories info and profiles, but I am so thankful to have the outlet for additional support and to lern of more current information and options. The general web and statistics were eating me alive – so refreshing to read some positive …and hopeful stories…

       

      Thanks again 

Viewing 5 reply threads
1 2
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.