slbbw

slbbw's Recent CancerCompass Activity

• 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. 

  Yesterday 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 at 1:39 AM 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 at 7:53 PM 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 at 7:39 PM 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 at 8:50 PM 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 at 8:41 PM view discussion

• slbbw has replied to a post on the message board

  It is an interesting time for this to come back up.  We just had a scare about a possible pregnancy and the full 6 month window had not passed yet.  I looked intyo everything I possible could and there is actually no link between infertility and birthdefects with Temodar that has been reported in recent literature.  Our NO basically told us the same thing, but said to be on teh safe side give your body...

  December 20 at 8:35 PM view post

• slbbw has replied to a post on the message board

  My husband lost about half of his hair due to radiation.  at least 50% of that grew back completely.  He has a patch, about 25% of his scalp that has a very fine short layer of hair.  He keeps his hair short now, but his tumor was the frontal lobe and it would be a noticeable patch no matter the length.  This seems to not be the norm however, from those I have talked to.  Our RadOnc told us t...

  December 06 at 4:29 PM view post

• slbbw has replied to a post on the message board

  My husband is by no means a long term survivor, but even I find it difficult to come back when things are going well, and they have been for a while.  It is always a sobering reminder that it could always recur.  I have to say, your posts are always helpful, and I am personally greatful for the responses you have given.  I think it is important to pop in and help where you can.  You may feel like...

  November 15 at 4:34 PM view post