Guilt plus Questioning high function & Avastin masking reality

13 Posts | Page(s): Prev 1 2 

RE: Guilt plus Questioning high function & Avastin masking reality

by jon4156 on Wed Aug 22, 2012 01:02 AM

Quote | Reply

I agree with Hux.  Even if your husband's great shape masks symptoms from general observations, the MRI will not be fooled.  The doctors are not going to sugar coat anything so if they say he is doing well you can likely believe it.  I have felt the guilt you speak of, my wife is doing relatively well compared to so many others, however we should remember that some people need to hear good success stories to give them hope and show that in some cases you can still have a good life after GBM for however long you are fortunate to have it last.

 

RE: Guilt plus Questioning high function & Avastin masking reality

by Cristiana on Wed Aug 22, 2012 03:51 AM

Quote | Reply
Dear I Love Gary When there is too many cases of cancer in the family is good to do a genetic test about Pt 53, talk to his doctors about it. Other people from his family can have benefits if , God fotbid , anyone lacks this gene that protects us against tumor ( Li Fraumeni ) Lots of luck Cris

RE: Guilt plus Questioning high function & Avastin masking reality

by Pokie123 on Wed Aug 22, 2012 04:22 AM

Quote | Reply

We just started this awful journey with our 21 year old daughter in May, when she had surgery to remove a 3", wedge-shaped tumor in her right frontal lobe that turned out to be GBM Grade IV.  She has had 30 treatments of proton radiation and her first round of Temodar, all of which she has handled pretty well overall.  She is in one of the clinical trials for the vaccine made from her own white blood cells and tumor cells, and that starts next Monday.  We pray and hope every minute of the day for positive results and as her mom, it helps me to know that my feelings of being helpless and overwhelmed are not uncommon.  Most of the time, it feels pretty loney and unbelievably scary since we don't have any control over the disease or the reactions to the treatments.  I hate the feeling of this heavy weight hanging over our heads constantly that we just have to accept and deal with somehow.

I, too, need to read the success stories at this point.  It is the bridge that keeps me going and lets me have hope, at least for right now.

Thanks to everyone who shares their stories on this site.  My heart breaks for each and every one of you and it has become very obvious to me that not enough money or research has gone into brain tumor research and treatments. 

There aren't even that many BT support groups out there and that is a real shame, too.  I hope and pray that these clinical trials with the vaccines will show strong promise and that there will be more public education about early symptoms, so that more people can be diagnosed earlier, which is not happening now. 

This is a long post, but since I no longer sleep for more than a couple of hours a night, this site helps me share my thoughts and concerns with others who have to live this nightmare every day as well.  Thanks for listening.

13 Posts | Page(s): Prev 1 2 
Subscribe to this message board discussion

Latest Messages

View More

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