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Jeannie1
@jeannie2

Posts: 1
Joined: Aug 11, 2015

My husband was dx with glioblastoma

Posted by @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.

REPLY

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

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?

Hi All, I’m new to the group and just wanting to reach out for stories and a little more knowledge. You can search and search sites and although all cases are different, just thought some real life stories would help me. My mother was diagnosed on October 12, 2015 with a glioblastoma stage 4. She turned 70 on January 1, 2016. She is done with the 30 day Radiation, Temadar first initial 42 day treatment and has just started her 2nd “5 day” treatment which happens every 28 days. Her tumor is smack center in the top of her brain, surgery was done on Oct 15 to remove what they could. We just had her first MRI results on last Friday and the Dr. said, he’s impressed with her ‘progress’ but the scan still shows some “irregularities” he said to complete as they were and if anything changed drastically they would do another scan, if not, June. She is gaining her strength back and I realize I won’t see my mom zipping around anymore as she has done all her life, right up to a few days before the occurrence. No signs, no headaches, nothing and then BOOM, she had stroke symptoms and had emergency brain surgery. So, I was hesitant to ask in front.. what does that mean, really ? Not worse Not better ?? Any thoughts ?? or input? Thanks in advance. sorry for the lengthy message..

Hi @ljsandlin, welcome. You’ll notice that I moved your message to an existing thread. This was so I could introduce you to @eaglesview and @jeannie2.

Like your mother, Jeannie’s husband had Temadar. And Eaglesview’s husband just finished radiation treatment last week. I hope that you will connect and offer support and share information with one another.

You ask good questions LJ. It can frustrating to hear that there are “irregularities” but we’re just going to watch and wait. I prefer the phrases “watchful waiting” or “actively monitoring”. I don’t know the particulars of your mom’s case but sometimes treatment can be harder on a person than leaving slow growing cancer cells. These are great questions to ask her care team.

Do you live near or with your mom? She is lucky to have someone advocating for her.

@eaglesview how are you and your husband doing?

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?

Liked by Belinda

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?

@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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Hi Adri,

Welcome to our group here at Connect. I echo Colleen in expressing my condolences that this terrible thing has happened to your family. The one thing I can offer is that this is a wonderful time in cancer treatments. There are so many new developments in all kinds of cancer, but specifically with respect to glioblastoma. They are coming up with new drugs, and immunotherapy, and there are many new clinical trials all the time.

My best advice is to make sure that your dad is being treated by an expert team, who is involved with research and who follows all the latest developments. That way you can be sure that your dad will get the best treatments possible and will hopefully be here for you for many years to come.

Wishing you and your family all the best.

Liked by Belinda

@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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Thank you for your words! Eventhough I don’t know you, I really appreciate it! Thank God, he is actually being treated by excellent doctors. We live in Mexico City and we are very pleased with how things have come so far. I look at him everyday and it’s like nothing really happened, you know? He is doing so good! There is actually this doctor who is a neuro oncologyst and he is good, he is really involved with research! Like I said before, thank you so very much for your kind words!

@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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Hi, thank you for your words! He did just fine with the pills. I guess it has to do with his age, maybe. He is a tall guy, he used to be a runner so he is in very good shape. Yes, I’m kind of concerned about side effects but this is kind of our only choice, I guess. We don’t have any specific plans, I just want to be with him, no matter where.

Liked by annmerc

@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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Update! We are now at the 7 month point! Jim is doing superb! MRI and bloodwork great —next MRI in 3 months instead of planned 2 months! He is now driving –helping a farmer haul grain to the elevator. He drives 20 miles to the farm on his motorcycle and loads the semi trucks and then drives 30 miles, unloads the truck, drives back and does it all over again and again! He works 8 hour days and can’t wait to get up the next day and do it all over again! We have been blessed and want you to know that prayers help the process and comfort us! Also there is hope for an almost normal life again! Love and prayers for you and yours!

@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?

Liked by fastfay

@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!

Liked by martyc2016

@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

@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

@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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