Hi

I just found Cancercompass 3 days ago. I was looking for some kind of support group and I just google & found this site. I have been reading posts on here and so nice to know that I'm NOT alone going through this trial of dealing with  Cancer like all the fears, frustrations & stress of it all. My Husband got diagnosed with Brain cancer " Glioblastoma" on his right Temp Lobe February of this year. He had Brain Surgery January 30th & 4 days later we got the news that he has brain cancer. It was very difficult news to take!! He retired from the Military after 22 years of service and moved here to the Pacific Northwest in January of 2010 right after he retired. We have 2 boys age 15 yrs & 9 yrs old. Looking forward to start a new life after the Military. November of 2011, he got sick at work. They called 911 and as soon as he got to the Hospital, he had a Grand Mall Seizure and he was in ICU for 4 days. He had at least 3 more MRI including a Spectroscopy  and finally set a date for brain surgery on Jan 30th. He went through 7 weeks of Radiation treatments and he was on Tumadar,too. Last week May-31st he went for MRI and the result was not good. His Oncologist at UW Medical Center  told us the swelling in his brain is down but the cancer is back. It was such set back news for us. So he will be starting his new treatment next week. He will be on Avastin every 2 weeks & Carboplatin every 4 weeks. Praying for strength as he goes through this treatment. Deep inside, I feel so worried of loosing him because our Boys needs their dad around especially our younger one he is sooo close to his Dad. It just break my heart just thinking about it.

Judy

On Jun 08, 2012 9:13 PM jdykllr wrote:

I just found Cancercompass 3 days ago. I was looking for some kind of support group and I just google & found this site. I have been reading posts on here and so nice to know that I'm NOT alone going through this trial of dealing with  Cancer like all the fears, frustrations & stress of it all. My Husband got diagnosed with Brain cancer " Glioblastoma" on his right Temp Lobe February of this year. He had Brain Surgery January 30th & 4 days later we got the news that he has brain cancer. It was very difficult news to take!! He retired from the Military after 22 years of service and moved here to the Pacific Northwest in January of 2010 right after he retired. We have 2 boys age 15 yrs & 9 yrs old. Looking forward to start a new life after the Military. November of 2011, he got sick at work. They called 911 and as soon as he got to the Hospital, he had a Grand Mall Seizure and he was in ICU for 4 days. He had at least 3 more MRI including a Spectroscopy  and finally set a date for brain surgery on Jan 30th. He went through 7 weeks of Radiation treatments and he was on Tumadar,too. Last week May-31st he went for MRI and the result was not good. His Oncologist at UW Medical Center  told us the swelling in his brain is down but the cancer is back. It was such set back news for us. So he will be starting his new treatment next week. He will be on Avastin every 2 weeks & Carboplatin every 4 weeks. Praying for strength as he goes through this treatment. Deep inside, I feel so worried of loosing him because our Boys needs their dad around especially our younger one he is sooo close to his Dad. It just break my heart just thinking about it.

Judy

Judy

I am so sorry you are going through this. The CC Community is very passionate and will support you as long as it takes.

What the doctors are doing is called the Standard of Care treatment and has been around for a while (5 to 8 yrs).

The latest treatment is in Clinical trials now is a Vaccine. There are several companies working on it.

Here is an old link to the GBM work that was being done 3-4 years ago.

http://www.virtualtrials.com/braintreatments.cfm

There is a ton of information on this site if you start searching the CC site only. All kinds of comments and patients and support notes. I recommend you do that and then expand your research to the general net to back up what you have found.

I would also call Joyce Schaffer RN MSN OCN at TGen the Researchers:

http://www.tgen.org/contact/index.cfm?pageid=18

Ask her about GBM and what she would do. Their up on all of the latest research.

Here are all my personal notes:

http://liveforeverwithcancer.com/

Please keep writting.

My Best

John

Hi Judy,

UW medical is a good place for treatment.  I am on the other side of the state over in Richland.  I was DX july last year with Brain Tumor, had surgery 85% resection and was told ten days later it was GBM.  All was stable until Jan's MRI which showed full regrowth (inop) I have been on avastin and 140 mg of temodar (21/28 cycle) since.  Mine has now gone from baseball size to smaller than a golfball and still getting smaller.  Im assuming ur husband is fairly  young and in good health with the military background (tell him thank you for his service) That really will help keep the side effects away with the avastin. The only side effect I have had with the avstin  is some edema, which was treated with some Dex.  .

Best of luck to you and your family.

josh

I just happened to see your post, and wanted to welcome you to this site. Please tell your husband Thank you for His service to our Great United States, .

My cancer was on the eoiglottis which I chose to have removed by the De Vinci robot and it's been 7 months...I'm doing really well.

My wish is for healing and peace for your Husband and strength for you and the boys

Carolyn~~~Ohio

Thank you, Josh! We are very happy with UW Medical. My husband have always been a healthy guy till he got sick in November 2011 and that was the 1st time he got hospitalize since we been married 19 years now! We now know that his brain cancer is job related when he was still active duty in the Navy. We were told about all the side effects from Avastin and we do worry but  We will continue to pray for good news.

Thanks Carolyn and so happy to hear you are doing really well. I will tell my husband your message. He is feeling extra tired today so he goes to bed early tonight. It has been hard few days for us since the MRI news last Thursday we found out the Cancer is back!

John,

Thank You for those info. Really appreciate it. You have a great weekend!

Hello Judy - and sadly....welcome to this board.   So sorry to here about the recurrence and hope for a good response to avastin.   I was just curious - and if you don't mind my asking - how did they determine the root cause was from the military?  The reason I ask is because my husband has been around a lot of nasty chemicals his whole life, and even tho we were told no correlation, I still wonder.

Hi Judy,

I read many of the posts, but I rarely post myself. Anyway, my daughter who is now 24 was diag. with "GBM" when she was 20. She has had the standard treatment...crainotomy,radiation and temodar. Now four years later, she continues to do very well. All MRI's have been been good and we expect that to continue. Our family Believes in prayer and we know our prayers have been and continue to be answered. We cerrainly will add your husband to our prayers!

Bruce

On Jun 08, 2012 9:13 PM jdykllr wrote:

I just found Cancercompass 3 days ago. I was looking for some kind of support group and I just google & found this site. I have been reading posts on here and so nice to know that I'm NOT alone going through this trial of dealing with  Cancer like all the fears, frustrations & stress of it all. My Husband got diagnosed with Brain cancer " Glioblastoma" on his right Temp Lobe February of this year. He had Brain Surgery January 30th & 4 days later we got the news that he has brain cancer. It was very difficult news to take!! He retired from the Military after 22 years of service and moved here to the Pacific Northwest in January of 2010 right after he retired. We have 2 boys age 15 yrs & 9 yrs old. Looking forward to start a new life after the Military. November of 2011, he got sick at work. They called 911 and as soon as he got to the Hospital, he had a Grand Mall Seizure and he was in ICU for 4 days. He had at least 3 more MRI including a Spectroscopy  and finally set a date for brain surgery on Jan 30th. He went through 7 weeks of Radiation treatments and he was on Tumadar,too. Last week May-31st he went for MRI and the result was not good. His Oncologist at UW Medical Center  told us the swelling in his brain is down but the cancer is back. It was such set back news for us. So he will be starting his new treatment next week. He will be on Avastin every 2 weeks & Carboplatin every 4 weeks. Praying for strength as he goes through this treatment. Deep inside, I feel so worried of loosing him because our Boys needs their dad around especially our younger one he is sooo close to his Dad. It just break my heart just thinking about it.

Judy

Judy

I have been doing some more research and another great option(ask your doctor) to explore if the cancer type is very similar to NSCLC like Adenocarcenoma, is Carbo and Alimta. I am not a doctor but i personally have had it 15 to 20 times and all clear. I am a lung cancer survivor and it works very well on me after 4 recurrances. The internet research i did shows that it Crosses the Blood Brain Barrier which is half the battle in GBM types. There are also tons of notes and comments in this CC web site by doing searches.

Here is the link:   Type this into Google

Does Alimta cross the blood brain barrier

Here are all my personal notes:

http://liveforeverwithcancer.com/

My Best

John