longest living glioblastoma-multiforme survivor - Jerry

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RE: longest living glioblastoma-multiforme survivor - Jerry

by Isabela97 on Wed Oct 20, 2010 08:43 AM

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Either Duke hospital in Carolina or MD Anderson in houston. My Husband is currently been treated @  MD anderson and it they gave us HOPE!Goodluck !

RE: longest living glioblastoma-multiforme survivor - Jerry

by ToraG on Sat Oct 30, 2010 10:01 PM

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March 6, 2000 my Mom was diagnosed with glioblostoma. I was only 7 years old at the time and i was the youngest of 9 children. My mom had a total of five surgeries to remove her golf ball size tumor on the right side of her brain. She was also undergoing chemo and radiation treatments. After two years of hell the battle was over! She was able to defeat her cancer and we just celebrated her ten year anniversary this year, but with all the surgeries, medication, and chemo left my mom paralyzed completely on her left side of her body and a diabetic. She is still with my family today and we are forever grateful but it has completely changed my mom’s personality. And since then she has had several problems because your body can never fully recover for all of that torture. I am able to love her every day because of what she endured but i have also been taking care of her for the since i was eight. I recommend that you keep strong. it is very hard but very worth it. If we had not been living in Utah my mom would probably not survived because we went to the huntsman cancer center. If you are planning on traveling for medical help i strongly recommend going there. They were really great to us.

 

RE: longest living glioblastoma-multiforme survivor - Jerry

by I_love_Gary on Sat Oct 30, 2010 11:23 PM

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Well Tora, if your mom is a 10 year survivor of GBM, then it does say a lot about your cancer center.  I am very happy that you have had your mom all of this time.  It is a sad thing that our loved ones lose their original personalities, and I suppose after 10 long years, and you only being 7 when she was first diagnosed, you would hardly remember her the way she was before.  You must be an amazing child, and at 17, you will be making her proud every day, growing up as an empathetic and caring individual, because of your experience with her.  Your right, I think it is worth it, and I can only hope that your mom is there when you walk down the aisle to your own future.  Keep being the special person that I think you are.                DL

RE: longest living glioblastoma-multiforme survivor - Jerry

by ToraG on Sat Oct 30, 2010 11:33 PM

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Thank you. After all of this I have become a very strong person and i am a strong believer that everything happens for a reason. and every time i find another reason to why it happened to me i become even more grateful for my mother. A couple of days ago my best friends family discovered that their dad has three tumors in his brian, they dont know what kinda of cancer it is yet, but i know will of my heart that one of the reasons i went through it was so that i can help them.

RE: longest living glioblastoma-multiforme survivor - Jerry

by YvonneV on Sun Nov 28, 2010 09:29 PM

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My husband, Robert Allen Vostry, served in the Marines during Vietnam.  He was recently diagnosed with level 4 GBM and operated on this October.  He is currently undergoing radiation and chemo.  Just found your email.  Thanks, Yvonne Vostry

RE: longest living glioblastoma-multiforme survivor - Jerry

by plzletmysislive on Fri Dec 23, 2011 05:31 AM

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My sister was just diagnosed with GBM Today 12/22/11

She is only 28 years old, And has 5 Children, She has not yet had chemo or radiation scheduled, They are going to call and set it up within the week, Christmas is terrible this year.

her children are not even teenagers, And her youngest is not even a year old.

what can she do? Any trials that help? Please help her.

RE: longest living glioblastoma-multiforme survivor - Jerry

by geekgoddess8257 on Fri Dec 23, 2011 06:04 AM

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http://clinicaltrials.gov/ct2/home

Also, I know that an arm of the Duke University GBM Tumor auto-vaccine study is coming to the IU Simon Cancer Center here in Indianapolis in the near future. (My dad's neurosurgeon is one of the Drs in on it)

Make sure you get an actual Neuro-Oncologist. They specialize in tumors/cancers of the brain, and will be the most up to speed on the current treatments.  Right now this is: surgery if possible, followed by about 6 weeks of radiation, and either Temodar or possibly CPT-11 for chemo. The Temodar is a capsule/pill she can take at home.  Haven't used the CPT-11.  I also think I remember something about one called carboplatin (sp?).

The Dr may also give her a steroid called dexamethasone (Decadron) to help with any swelling that may occur in the brain.  Mood swings, increased anger/irritability, and severley increased appetite and weight gain are not uncommon whi9le taking it, but the benefits are usually well worth it.  They may also add on at least 1 anti-epileptic if she is having seizures.  My dad is currently on 3: Keppra (leviteracitam), Lamictal (lamotrigine), and Vimpat (lacosamide).

A newer line of defense is a drug called Avastin.  It's used to try and keep the tumors from being able to get a blood supply to feed them.  Sometimes the Drs give it along with the Temodar, sometimes they wait to use it until after the Temodar stops working.  It does have some pretty severe possible risks (stroke or even death) for some people, especially for those with high blood pressure, but for a lot of people it's proving to be quite an effective treatment.

Arm yourselves with as much information as possible.  Find & join a local support group.  Not just a group for the patient, but try and find a group for the family/caregiver(s) as well. It helps. A Lot!  They will usually also have support groups for the kids of the patient.  Check with the Social Worker at your local hospital.  They can lead you to one.

Prepare for the worst, but always hope for the best, and know that everyone here is in this battle with you in some way, shape, or form.  You and your sister are not alone.

My father is going on 21 months now since initial seizure/diagnosis. He has some issues, but he's still fiesty!  Don't give up hope.  They are finding new possibilities every day.

And relish the holidays.  We should ALL do it ALL the time, because none of us know when we or our loved ones are going to go before us. Every day for every one, not just for those battling an illness, is a gift and an opportunity to cherish it and share it. (Even when the dexamethasone induced crabbiness makes you want to give them a boot to the head)

RE: longest living glioblastoma-multiforme survivor - Jerry

by jjcsdaisy1 on Fri Dec 23, 2011 09:25 AM

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Hello,  my husband Jim was diagnosed with glioblastoma this past October - as I am finding out, we were like so many others, and didn't even realize what was happening, we thought Jim had a "sinus headache" that just wouldn't go away and...he went in for a yearly physical and, because he did have some sinus drainage at that time and all else (other than his tryglicerides) looked okay, he was put onto an antibiotic for a sinus infection...at the time he was rotating in and out of Romania and had just gone over there (from Texas) - I realized that something more was happening just from speaking with him (or trying to) on the phone and...as I couldn't get anyone there to realize that something was seriously wrong, I booked a flight home for him and was lucky to get him home, directly to the hospital and diagnosed with a brain tumor - which was operable and removed two days later however...it was diagnosed as glioblastoma.   Jim has just finished his radiation and first round of chemo (Temodar) at the Seton Brain & Spine Center in Round Rock - we have also been to M D Anderson where we will be heading the second week in January for an MRI to find out if the radiation and chemo have been helpful and to discuss a clinical trial that he may qualify for.  To do so his tumor had to be tested to see if he had the MGMT promoter (at the time that we spoke with M D Anderson, I didn't realize the implications but after researching found that I was hoping he would not qualify as that would mean he did have the promoter and that the Temodar would be more effective, however, he does qualify - no MGMT promoter).  The clinical he is looking at will treat him with Avastin and Tarceva and I am hoping to get some thoughts, experiences, from anyone or their caregivers who is being treated with either or both of these drugs to find out what side effects (there are many listed and many very frightening), problems and or benefits they have experienced.  Thank you all for sharing your stories - as I'm sure everyone will agree...when you or a loved one is diagnosed with anything of this sort, you become very knowledgeable about many things concerning the cancer in a very short time...and try to find out anything you can...the newest, most promising thing, ANYTHING that might be helpful...anything to at least slow the progression and pray that a cure be found ... I consider it a blessing that my Jim was able to get home and that they were able to do a resection and that he is doing so well at this time and...just appreciate each day that I wake up to his smile and sweetness - I cherish the time that we have together and pray for each and everyone of you that is wading through this - whether it be as a survivor, a wife/husband/significant other/child -

Lisa

RE: longest living glioblastoma-multiforme survivor - Jerry

by sdevito03 on Fri Dec 23, 2011 10:06 AM

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Hi Lisa,

My course of treatment right now is Avastin every 2 weeks and 5 days of Temodar every 28 days.  The only side effects I seem to have are that the Temodar makes me very sick to my stomach, I take 4 pills a day for 5 days so I take one every few hours throughout the day so I don't vomit.  I am also very tired now, nap a few hours each day and go to bed early.  The only side effect I seem to be having from the Avastin is pain in my feet, knees, arms and hands.   Other than that I go to the gym everyday, ride my horse, drive my car and feel pretty normal.  I also took myself off the steroids and anti-seizure medicine they had me on and that helped alot.  I just had an MRI yesterday that did show some changes but they aren't sure what is going on just yet.  Prior to that my MRI had shown the tumor as dormant and actually a bit smaller.  I was originally diagnosed last April and am working hard to get to this April to surpass the 12 months they gave me to live.  I will say a prayer for your husband.  Best of luck -

Susie

RE: longest living glioblastoma-multiforme survivor - Jerry

by Sonso on Fri Dec 23, 2011 12:32 PM

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Geekgoddess' reply is perhaps the most cogent I have seen.  GBM gets you in the end, but you must have a philosophy of how to deal with the 'journey', both as a patient (while you still can) and as a caregiver (while it still matters).  We were pleased with the treatment we received at Hopkins, Georgetown, and Duke, although, of course, in the end none of them forestalled the inevitable.  My brother made it 22 months from dx.

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