1. < Caregivers

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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 25, 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 update @js119. I’m sure new member @adri will appreciate reading this update. What treatments did Jim have?

REPLY
js119 | @js119 | Jun 25, 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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The standard-surgery followed by 6 weeks radiation and temador–now starting his 4th round of 5 days Temodar and 23 days off. Just good attitude and daily tasks to keep him moving. We own a Bed and Breakfast so there is not a lot of down time in our lives!

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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

REPLY
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, Connect Director | @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.

REPLY
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!

REPLY
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!

REPLY
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

Jump to this post

Great news! Thanks for letting us know.

REPLY
Dawn, Alumni 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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