My husband was dx with glioblastoma
I am new to this group. My husband was dx with glioblastoma stage 4 July 2014, he is 73. The tumor was completely removed, he had 30 radiation treatments of 42 temadar treatments. It has been a year and his MRIs are clear. His reaction time and short term memory is not what it use to be but otherwise he has a good quality life other than dreading the MRI as we have been told it will come back and was given 12-15 mos. It has been 13 mos and he is still doing well. Would like to hear from others who have had glioblastoma.
Liked by Colleen Young, Connect Director, eaglesview, adri
js119
@js119
@js119
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Joined: Feb 04, 2016
@eaglesview We have just entered the Glioblastoma world on November 23rd, 2015. My husband is 74 years old and has never been sick before! His tumor was still in the “ball stage” (no fingers into the brain). He had surgery on December 14th, 2015 and is completing his 30 radiation and 42 temador treatments. Actually will complete his last radiation on March 1st! His quality of life is great — no headaches, swelling,etc and his lab tests are so good that they have skipped two times and don’t plan to do this weeks lab work either! Jim’s loss is his right peripheral vision and so he hasn’t been able to drive. We are hoping he regains that so his days are not spent without some driving! We would love to keep in touch with you as we both journey through this NEW NORMAL we are forced to live! Linda
Thanks! He is doing fabulous and I am almost able to put the diagnosis in the back of my mind! We have been and continue to be blessed!
js119
@js119
@js119
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Joined: Feb 04, 2016
@colleenyoung Welcome to Connect @eaglesview!
March 1st is so close. That will be a big milestone. Is he having daily treatments?
@jeannie2 how are you doing? How is your husband?
We are doing great! June MRI shows all is well. Treatments are 5/23 Temodar -today is end of 5 cycles. He is on a 6 month Bactrim prescription as side effects of Temodar can produce pneumonia in some people. Life is good right now!
Liked by Colleen Young, Connect Director
Cynaburst, Alumna Mentor
@cynaburst
@cynaburst
Posts: 272
Joined: Dec 26, 2014
@eaglesview We have just entered the Glioblastoma world on November 23rd, 2015. My husband is 74 years old and has never been sick before! His tumor was still in the “ball stage” (no fingers into the brain). He had surgery on December 14th, 2015 and is completing his 30 radiation and 42 temador treatments. Actually will complete his last radiation on March 1st! His quality of life is great — no headaches, swelling,etc and his lab tests are so good that they have skipped two times and don’t plan to do this weeks lab work either! Jim’s loss is his right peripheral vision and so he hasn’t been able to drive. We are hoping he regains that so his days are not spent without some driving! We would love to keep in touch with you as we both journey through this NEW NORMAL we are forced to live! Linda
Great news! Thanks for letting us know.
Dawn, Volunteer Mentor
@dawn_giacabazi
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js119
@js119
@js119
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Joined: Feb 04, 2016
@dawn_giacabazi So encouraging and so many blessings to be thankful for. My mom passed away from a stage 4 GBM. It is truly a scary process. Stay positive and living each and everyday to it’s fullest. Will keep each one of you and your loved ones in our prayers.
Thanks for responding. We are keeping positive and taking time to enjoy time together! Sorry to hear of your Moms passing. One never knows the future.
Liked by Dawn, Volunteer Mentor
Sandy Dominy
@sandydominy1
@sandydominy1
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Joined: Aug 04, 2016
My hubby was diagnosed in December 2015. They surgically removed 95%. He received radiation and chemo for 6 weeks. We are now on chemo maintenance. Hubby is doing well and loads of folks are praying. We’ve been to Duke for consultation. If it comes back we will go to Duke for possible clinical trial. Duke has had great success with trials, particularly with inserting the polio virus into tumors. We live outside Atlanta and Duke is only a few hours away. Make sure you inquire about clinical trials
barb kaser
@barbkaser
@barbkaser
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Joined: Aug 06, 2015
My story is similar but we are now in the clinical trial you mentioned at Duke taking the MRZ . His tumor is too close to the bridge between the right and left side of the brain so they can’t give him the polio vaccine until his tumor shrinks from that site. Oct 3rd is the next mri so we’ll see if there is any improvement, I am quite impressed with Duke and the staff there.
Colleen Young, Connect Director
@colleenyoung
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Joined: Jul 23, 2014
@barbkaser My story is similar but we are now in the clinical trial you mentioned at Duke taking the MRZ . His tumor is too close to the bridge between the right and left side of the brain so they can’t give him the polio vaccine until his tumor shrinks from that site. Oct 3rd is the next mri so we’ll see if there is any improvement, I am quite impressed with Duke and the staff there.
Thinking of you @barbkaser as you prepare for tomorrow’s MRI. Please let us know how it goes.
@colleenyoung
In reply to @colleenyoung
Thanks for posting this @predictable. While this research indeed is very promising, I appreciate your pointing out that the study is in phase 2 trials, meaning that it will still be some time before this becomes standard treatment. It is important to evaluate the research reported in the news as you have done here.
I found this thorough article from the Family Caregiver Alliance on Evaluating Medical Research Findings and Clinical Trials
https://www.caregiver.org/evaluating-medical-research-findings-and-clinical-trials It is well worth the read.
Liked by Dawn, Volunteer Mentor, Martin Jensen, Volunteer Mentor