Loading...

slbbw's Recent CancerCompass Activity

  • slbbw has replied to a post on the message board

    No she is bRAF negative.  We have also been told she will not qualify for any trials. 

    July 15 at 12:39 PM view post
    • slbbw has replied to a post on the message board

      Hopefully this is not derailing the post.  For those of you who lost loved ones, can you please give me an idea of what the progression was like.  I am trying to be optimistic for my mom's recent dx but I would also liek to know what to expect.  I am planning to try and visit as much as possible, but I really do want to be prepared to deal with her decline.  feel free to answer me here or privatel...

      July 10 at 3:31 PM view post
      • slbbw has created a new message board discussion

        My mom has stage IV melanoma with bone mets as well as others and her only initial option is dacarbazine/DTIC.  Has onyone else on here had sucessful treatment with this.  They will consider yervoy if she responds to the DTIC, but only if she responds.  I know the numbers are 10-15%, but I am looking for some anectdata. 

        July 10 at 3:00 PM view discussion
        • slbbw has replied to a post on the message board

          Scotttt, do you have any studies or papers on the IDH1 gene.  My husband had a mixed glioma, so they only did the testing for the 1p 19q deletion. 

          May 17 at 5:15 PM view post
          • slbbw has replied to a post on the message board

            That is fantastic!  always glad to read appy stoies on here.

            April 30 at 5:53 PM view post
            • slbbw has replied to a post on the message board

              My husband had very few if any side effects from the Temodar.  He took it with zofran and experience no nausea.  His biggest issue was constipation.  We did have to make sure he ate.  He lost his apetite for a few things.  We stopped treatment at 10 months because his blood levels did finally drop and there was no signs of growth so the need to continue treatment was minimal anyhow. 

              April 08, 2013 view post
              • slbbw has replied to a post on the message board

                I know this was not directed to me exactly, but the length of teh Temodar is soemthing we grappled with and I researched extensively.  My husband ended up doing 10 months total.  The research done on Temodar was only done for 6 months.  There is nothing but positive anectdotes for 12 month temodar.  However I believe from what I have read teh doctors must see positive results with it.  As f...

                February 20, 2013 view post
                • slbbw has replied to a post on the message board

                  I can only tell you that I, well actually my husband has been there.  Mike was dxed  Sep 2011, our daughter was 4 months old at the time.  His dx was astro/oligo 3.  They did very aggressive therapy with him, 6 weeks radiation with temodar and then 12 months of temodar following.  We ended up only doing 10.  The last treatment was in october and all of his scans have been clear, the last...

                  February 20, 2013 view post
                  • slbbw has replied to a post on the message board

                    I would definitely recommend her sending her scans out to as many NS on teh east coast as possible.  Duke as PP mentioned is probably closest.  Our doc at georgetown was also very good, as well as NIH and johns Hopkins.  I would see if they would be able to give an opinion over teh phone or e-mail.  Proceeding with radiation is not a bad thing to do since the tumor is in a bad location, but withou...

                    December 20, 2012 view post
                    • slbbw has created a new message board discussion

                      There is not a ton of folks on here with grade 3 tumors, I tend to see mostly GBMs or grade 2 oligos.  We went through the full regimen of treatment and have had our first clear scan since being off treatment for 2 months now.  yay!  I wonder though if I can revert to my optism, or if we should be expecting a recurrence and when.  Most of our doctors have been very optimistic with prognosis, yet w...

                      December 20, 2012 view discussion
                      Loading...
                      Load more activity
                      Loading more activity

                      About slbbw

                      slbbw has not shared any information about themselves. Send them a message to tell them you'd like to find out more about them or add them as a friend.

                      We care about your feedback. Let us know how we can improve your CancerCompass experience.