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My husband was dx with glioblastoma

Posted by Jeannie1 @jeannie2, Aug 11, 2015

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 26, 2016
In reply to @adri "Hi everyone! My dad was dx with glioblastoma stage 4. I'm 27. He is 58 years..." + (show)
@adri

Hi everyone! My dad was dx with glioblastoma stage 4. I’m 27. He is 58 years old, never been sick before. He had surgery on March 15th, 2016. The tumor was completely removed, thank God. We had his MRIs on April 17th and the drs said it was a perfect surgery. The next one will be on September, 2016, we still don’t know the day. He completed his radiations and Temadar on June 3th, 2016. And now he is staring again with Temadar 100mg 5 days every 28 days, on July 1st, 2016. Our lifes have completely changed since we found out about this. At the beginning, we didn’t really now what it was about but now we know and all I can say is that these have been, by far, the worst months of my life. He is still full of life, this is so unfair… He is fine now, I mean, scared but no more headaches, his tumor was on the right front part of the brain wich kind of helped because he speaks, walks… I mean, everything normal. I can’t even describe my sadness and anguish! But when I look at him, I feel happy, so… Lets see what happens! does anyone would like to share a positive testimony about this tumor?

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How wonderful that you have good doctors and more importantly that you can be hopeful in your situation.  Blessings!Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 26, 2016
In reply to @eaglesview "We have just entered the Glioblastoma world on November 23rd, 2015. My husband is 74 years..." + (show)
@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

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What a wonderful attitude you both have!  Best wishes and my prayers go with you both!Teresa

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Mentor
Martin Jensen, Volunteer Mentor | @predictable | Jun 27, 2016
In reply to @colleenyoung "Welcome to Connect @adri. I can only imagine your sadness and anguish. Both you and your..." + (show)
@colleenyoung

Welcome to Connect @adri. I can only imagine your sadness and anguish. Both you and your father are so young to be on this journey – he as a patient and you as a caregiver and daughter. I love that you feel happy when you are with him. I say focus on the here and now and that happiness. Focus on the success of the surgery and the treatments.

@ljsandlin @eaglesview @jeannie2 @cynaburst, I hope you’ll join me in welcoming Adri.

Adri, how did you father do with Temadar treatments last time? Are you concerned about any side effects? Do you and your father have holiday or special summer plans?

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@colleenyoung, I saw your message regarding glioblastoma and wanted to make sure everybody hears about the Duke University “breakthrough,” as declared by the FDA. CBS News broadcast details on its 60 Minutes program back on May 15, making it clear that it is one of the most exciting prospects ever in the war against cancer in general, not only brain tumors. I’d guess that @ljsandlin, @eaglesview, @jeannie2, @cynaburst, @adri, and many others will be greatly interested. Here are two links to the CBS News reports on the breakthrough:
http://www.cbsnews.com/news/60-minutes-fda-breakthrough-status-duke-university-cancer-therapy/http://www.cbsnews.com/videos/whats-next-in-fighting-cancer-with-polio-virus/
Using modified polio viruses, Duke U medical scientists successfully attacked and killed glioblastoma in several patients. Although the cancer came back in a few cases, it had been made vulnerable to cancer-cell killers in their newly tuned-in immune systems that were working on the second tumor. The FDA and Duke are so encouraged by the discovery that they advanced it to Phase 2 testing that will be conducted through trials in 40 locations around the country!

At this stage of the research, such encouraging news is nevertheless conditional — participants in the trials can get the benefits in the medium term, but others must wait until the trials are completed and the therapy is offered to all. Until then, patients and their families may develop false hopes about obtaining a treatment now that is at least months away from being available to them.

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Moderator
Colleen Young | @colleenyoung | Jun 27, 2016
In reply to @colleenyoung "Welcome to Connect @adri. I can only imagine your sadness and anguish. Both you and your..." + (show)
@colleenyoung

Welcome to Connect @adri. I can only imagine your sadness and anguish. Both you and your father are so young to be on this journey – he as a patient and you as a caregiver and daughter. I love that you feel happy when you are with him. I say focus on the here and now and that happiness. Focus on the success of the surgery and the treatments.

@ljsandlin @eaglesview @jeannie2 @cynaburst, I hope you’ll join me in welcoming Adri.

Adri, how did you father do with Temadar treatments last time? Are you concerned about any side effects? Do you and your father have holiday or special summer plans?

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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.

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js119 | @js119 | Jun 29, 2016
In reply to @eaglesview "We have just entered the Glioblastoma world on November 23rd, 2015. My husband is 74 years..." + (show)
@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

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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!

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js119 | @js119 | Jun 29, 2016
In reply to @colleenyoung "Welcome to Connect @eaglesview! March 1st is so close. That will be a big milestone. Is..." + (show)
@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?

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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!

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Cynaburst, Alumna Mentor | @cynaburst | Jun 29, 2016
In reply to @eaglesview "We have just entered the Glioblastoma world on November 23rd, 2015. My husband is 74 years..." + (show)
@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

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Great news! Thanks for letting us know.

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Mentor
Dawn, Volunteer Mentor | @dawn_giacabazi | Jun 29, 2016

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.

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1 reply
js119 | @js119 | Jun 30, 2016
In reply to @dawn_giacabazi "So encouraging and so many blessings to be thankful for. My mom passed away from a..." + (show)
@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.

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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.

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Sandy Dominy | @sandydominy1 | Sep 13, 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

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barb kaser | @barbkaser | Sep 16, 2016

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.

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1 reply
Moderator
Colleen Young | @colleenyoung | Oct 2, 2016
In reply to @barbkaser "My story is similar but we are now in the clinical trial you mentioned at Duke..." + (show)
@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.

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Thinking of you @barbkaser as you prepare for tomorrow’s MRI. Please let us know how it goes.

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