sluss910

I'm interested in hearing about expierences with radiation effects.  My husband is about 2.5 years in and has a stable MRI and clear PET scan as of today, but symptoms seem to be worse than ever.

Thanks for sharing any information any of you have on this topic!

~Sheri

I truly feel that Avastin is one of the major things that has allowed my husband to survive the last 28 months!  I know there are alot of side effect possibilities, so it is definitely an individual family decision!  All my best....

Sheri :)

:)  Tears came to my eyes and chills to my body when I read this and everyones follow up.  We are currently 26 months out of diagnosis and wow, what a ride it has been (and continues to be).  Goodness our daughter was 16 months when we first started and now she will be 4 in April!!  My profile pic is a little outdated. :)  Speaking of which I do miss seeing who people are.  I too find it difficult to come back at times.  I definitely have to take breaks from the site as I can obsess over things.  But, I'm always drawn back to it and even if I don't post as much as I use to, I often "lurk".  This website has been an invaluable resource for me and I have "met" multiple people with whom I keep in contact with off the site who have helped me through this journey!  When I find out about someone with a new cancer diagnosis one of the first things I refer them to is this website and CaringBridge/Care Pages! 

Prayers for you all!!

~Sheri

CB:joshslusser

Gliosarcoma which is similiar, yet different from Glioblastoma does have an ability to metastasize to other parts of the body other than just the spinal cord.  My husband was originally diagnosed a St. Louis hospital that doesn't specialize in Brain Tumors/Cancer with GBM IV, but upon further testing at Duke University, they have determined his is actually Gliosarcoma.  Thankfully my husband's has not spread at this time, but it may be something you want to look into. 

Prayers!

Sheri

Linda, your post has given me the chills!  I'm so happy for you!!!  I am not on CC too often anymore either, but for some reason today decided to see what all had been going on.  It is so nice to hear of your happiness, you 100% completely deserve it!! Congratulations!!

Love, Sheri

On Aug 04, 2012 10:25 PM glasscgg wrote:

Dr. Henry Friedman at Duke & Dr. Mark Katapka in Philadelphia confirmed that the wafers placed in my brother's head for Stage IV GBM meant that no trial would "touch him".  A release had to be signed to have them implanted, given permission & confirming that my sister-in-law knew this.  I have a copy of that release. 

I can't tell you the heartbreak when we learned this happened after the fact.  Research is a wonderful thing.  It's at our fingertips. 

We were not allowed in any meetings when my sister-in-law met with Dr. Katapka at Einstein Hopsital in Philadelphia. 

Do your research!!!  I wish we were given the opportunity!!

Yes, we were told this at Duke as well for my husband in December of 2009.  Things may have changed or studies added/deleted, but for us chemo wafers meant no trials.  However, we are okay with that because we can't say that those chemo wafers didn't help him get to where he is today. 

As far as talking to kids, when we went to Duke for our initial visit we were put in contact with a Child Life Specialist there who was a great help for not only our daughter, but the many nieces, nephews and friends kids that are in our lives.  And not only helpful for the kids but even more so for the parents.  I would defintiely check and see if there someone at the facility you are being treated at and they should be able to refer you to someone. 

Hi.  I'm so sorry you had to find us on here, but I'm so glad you did so early on!!  My husband was diagnosed at age 33, he's now 35 and almost 2 years out.  At the time of diagnosis our daughter was 16 months old, so we know how hard that part of it is! 

I agree 100% with the others on here who have posted...  definitely do everything you can to go to one of the top Brain Tumor facilities, have a NEURO oncologist, and for sure check about the wafers.  My husband had one put in at surgery, we didn't know at the time there were certain brain tumor centers to go to and once we found out there were he didn't qualify for trials because of the wafer. 

We now go to Duke, but there are a handful of great places out there.  My thoughts and prayers are with you and your family. 

~Sheri

All of this is sooo true!  I wish I could just post the link to this thread on my husband's caringbridge site.  I'm so sick of people only being around when things are on a downslide and I'm om a downslide.  Offers, offers, offers, I never believe them until they actually happen and when they do happen it's usually by people whom we are not even close to vs. those who you'd have thought would be helping you out.  All of this has opened my eyes in SO many different ways.  And yes, there are many people in particular that I'm bitter towards and I'm praying someday I will be able to forgive them.  I just want to be "normal" again, all of this sucks and is very lonely.

I would recommend for anyone who has any type of brain tumor to go to a facility that specializes in brain tumors!!  Such as Duke or MD Anderson... there are many others too.  I would not be comfortable with the "watch and wait" approach, especially if there has been any type of growth unless it is coming from one or more of the Dr.'s that truly specialize in brain tumors.  Good luck to you!

~Sheri