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sluss910's Recent CancerCompass Activity
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!
February 06, 2013
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....
January 17, 2013
:) 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 My profile pic is a little outdated.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 fi...
January 08, 2013
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 sprea...
October 25, 2012
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!!
September 14, 2012
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.
August 05, 2012
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 ...
August 05, 2012
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, ...
August 04, 2012
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 helpin...
July 30, 2012
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!
July 28, 2012
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My husband was diagnosed with GBM IV at the age of 33 in late September 2010. We have a beautiful 2 year old daughter and are doing everything we can for him to battle this horrible, horrible brain cancer!
9/24/2010 1st MRI indication of tumor/swelling
9/30/2010 Brain Surgery
10/3/2010 Home from hospital
10/12/2010 MRI (severe headaches) – stable
10/14/2010 Start Radiation/InitialTemadar
11/24/2010 Last Day of Radiation
12/14/2010 MRI – stable
12/30/2010 Started Avastin
1/14/2011 Spiral CT of lungs - clear
1/17/2011 ER – head CT (headache) – stable
2/14/2011 MRI - Stable
4/14/2011 MRI - stable
4/20/2011 ER (headache) – CT scan – stable
6/20/2011 Next Scheduled MRI