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Glio tumor grade III that is inoperable

Daddys_Girl123
Posts: 3
Joined: Dec 2011

My dad age 57 was just diagnosed last week with grade III Glioblastoma. The doctors say they are going to treat it as a grade IV. His tumor goes from one side of his brain to the other, it is inoperable. He goes Tuesday to meet with his oncologist to set up radiation and chemo treatment options. From what I have researched on glio tumors, the survival rate is not good at all. I have had my dad for 35 years and I am not ready to give him up to cancer! My husband recently battled leukemia and is now in remission, I just pray there is some hope for my daddy. Anyone who can help me with any advice, please respond. Thank you!!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I am so sorry...I went through this nightmare with my sister, thinking I was going to wake up from that horrible dream only to wake up and God it was REAL... Thinking about it makes my heart hurt. I hope you can go with him to his appt on Tuesday. Take a note pad, take notes. Its hard to take everything in. They will most likely do the standard treatments. Radiation and temador, maybe avastin too. Its really scary, I know...Once he starts treatments it will feel like you can breath a little, just having a game plan, a place you have to go everyday. I remember feeling like I was doing something about it. The radiation causes some changes in the head so a few days into it if you notice one side of the body not moving right, like when he is talking and his mouth isnt moving on one side, dont panic, its more than likely swelling in the brain from the radiation, call the doctor right away. The sooner you take care of it with something like decadron the sooner it goes away.
I would say thats all you need to know now. Take care of your self too, eat, and get sleep and pray.
Let us know how things are going. This site is a good sounding board, a place where people really know how you are feeling...Take it one day at a time, no two brain tumors are the same. I remember going through all the posts looking for someone with the same tumor, same size and same place. But that was a waste of time. every tumor reacts the way its going to react.
Take care...

dasspears
Posts: 233
Joined: Feb 2009

My SIL was just diagnosed with Stage 4, level 4 glioblastoma - two tumors. One is inoperable and located mid-brain. She is on Temodar and had done 15 radiation treatments out of 30. At that time, the doctors will perform a CT scan to determine if the tumor shrunk, remained stable or grown. Would you share with me what to expect from the radiation - such as any lasting health issues? Thank you!

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

The first MRI post radiation can be worse than the one before the radiation because of all the inflammation caused by the radiation. So if the first post radiation MRI is a bit worse do not panic.

As far as lasting effects from radiation, well frankly I try not to think to much about it. Because we don't have a choice of refusing radiation. Without the radiation, the tumor will continue to grow.

There is a chance with radiation of cognitive impairment; of a new tumor growing because of the radiation (low chance), and your hair never growing back (yes, the hair is negligible when compared to life and death, but for a woman hair is our beauty and only way to be normal in society).

J.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

The radiation did make my hair fall out, and it has been two years since I had the radiation and I still have a bald spot that has really thin hair over some of it. I just parted my hair to the other side, and if you did not know that the bald spot was there you would never know I had a bald spot. Trust me, radiation that causes your hair to fall out is a small price to pay just like I Promise said, compared to living a healthy life. I will keep you and your family in my prayers.

dasspears
Posts: 233
Joined: Feb 2009

I well know the hair thing! I am a 4-year anal cancer survivor. Lost hair two locations - one grew back, other area did not. Agree - very small price to pay! Thanks so much for the info. It helps me to understand what she is going through.

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

And while I understand that surviving, speaking, running, dancing is more important than hair :) I do have a plan in place for my sister: (if you are a man you might -might I said- not understand our obsession with hair, after all a bald man can be sexy and very acceptable in our society) After a few years, I will look into hair transplantation to the bald spots. The technology has come a long way and some plastic surgeons do it pro bono for cancer survivors!
That day will be a happy day when I worry about hair and not paralysis, headaches, cognition impairment, tumor recurrence. Wait! That last one is my cross to bear. I will always be sickened with fear that the monster can be back.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

I never thought of hair implants. You are right it has come a long way. My husband told me he likes short hair anyway so he is fine with my bald spot. Lol! I was reading where people were asking Mattel to make a Barbie with no hair for the little girls that have cancer to prove that you can still be a Princess with no hair. That almost made me cry! I know how hard cancer treatment is (not just the hair part but all of it) to go through, and I cannot imagine my child going through this. It really makes you look at the world different whether you are the patient or the care giver.

All of you and your families are continuously in my prayers.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:

We met this wonderful hair stylist in Seattle that owns a Aveda Salon in Seattle. She was wonderful at making real hair wigs. She made my 18 year old daughter a real hair wig and also a weave. The weave was used to clip into her hair when she at first at only a small amount of hair loss. Then, when she lost most of her hair we had her real hair wig. She matched the color of both and cut the wig on Sarah's head. It was such a blessing for my daugher who was senior at the time.

Edna

Susan S
Posts: 3
Joined: Jan 2012

I'm just in the decision-making stage of whether to start radiation right away or not. The hair loss thing kind of bums me out. How was the rest of the radiation experience?

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Susan,

I will be blunt in my description of what happened to my sister.

What king of tumor do you have? It will really impact the decision making. At this point a grade 2 can have or not have radiation; the docs are divided. A grade 3... well the all of the clinical research papers have shown that only radiation plus chemo gives sometimes an outcome of living over 10 years.

The hair is very traumatic. You can also get radiation fatigue -chronic-. My sister (aa 3) was unfortunate to have a huge cyst developped within the cavity where the tumor was removed and she needed a second surgery to put a Omaya Reservoir. The second surgery was very hard on her (more so than the first one); she had extreme vertigo. Eventually all of her symptoms resolved. Also the radiation caused a lot of swelling in her right frontal lobe causing a partial left side paralysis. She went on some high dose of decadron. We are still decreasing her steroids. Her paralysis resolved within 24 hours of taking the decadron and she was back playing the piano and her smile was symmetrical again.

But she and I (and we are not oncologist) beleive that radiation is unfortuanately the only tool that has been shown scientifically to control the growth of the tumor (even chemo is not as effective). It can put the tumor in a state of hybernation for a very long time.

J.

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I wanted to add that even though radiation was hard for us, it is not always the case: a lot of people just cruise through it. My sister tried to work out everyday during radiation to combat fatigued.

The end result of the radiation is priceless. The rest of the tumor is not visible on the MRI (but I know that at the cellular level it is still there; that is why a 100% resection is impossible for gliomas).

Everything my sister and I do is buying time, and time will bring us a cure.

J.

connsteele
Posts: 232
Joined: May 2011

Thanks for your comments about radiation. It reinforces what I've heard along.

I have always felt a little guilty of approving radiation for our son (age 34) when he was 8 (...his first diagnosis of brain cancer, a medulloblastoma). All of his physical problems since then were directly, or indirectly, related to the long term effects of radiation...learning disability, hypo-pituitary, growth hormone deficiency (his adult height is 4'9"). Also, for his type 1 diabetes...when he was 10, he started on growth hormone, which they think brought on the diabetes (it does run in my family).

Now, he is dealing with his second brain cancer diagnosis of AA3, dx this past April, which his current NO (and the one he had in Virginia) said is caused by his previous cranial radiation. I mentioned to his current NO that if I had it to do again, I would have not approved the radiation when he was 8, and he was emphatic about saying that he wouldn't have had the 26 years he had between cancers.

So, this time around, he had radiation again, but I was very hesitant...angry really, at his radiation oncologist. But since he is now an adult, and makes his own decision re: treatment, our son wanted to have it, to fight with every tool available. It was really hard on him. In fact, at one point, the doc had mentioned stopping treatment and contacting Hospice. He was put on 24 mg of Decadron, which helped and got him through the treatments.

Reading again about how radiation is buying more precious time for him, despite the negative effects, helps relieve some of my resentment and anger about radiation.

dasspears
Posts: 233
Joined: Feb 2009

It is a depressing moment when you realize you are losing all your hair. But there are beautiful hats/scarves/turbans to wear and it was rather freeing not to have to wash/comb/gel hair for awhile. I hope no one thought that I was making light of losing hair.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

Losing my hair was not a pleasant experience, but I was just glad that I would have more time with my family and my daughter that is 4 now. I am not going to lie, I would sit in my recliner and just pull out hand fulls of hair anytime I ran my hands through my hair. I made light of it to my husband, but it was very heartbreaking! I just tried to make light of it, and finally it got to the point that I asked him to just shave the remaining hair off. My hair has grown back now, and I just part it a different way so you would never notice the bald area. That area does have little fuzz hair on it, but for the most part it is bald. I will post a Christmas picture of my family, and sometime this week take one of the remaining bald spot.

Love and Prayers to all,

Michelle
Mobile, Al

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

I'll add my two cent's worth about radiation. My son David (26 years old at the time) did six weeks of focal radiation along with Temodar. He was extremely fatigued by the time his treatments were over, and it took him a few months to regain his strength. His hair came out in handfuls too, and even though he's a guy and being bald is not the stigma that it is for women...he hated being bald. He felt like he looked like a sick cancer chemo victim. He just toughed it out though...no hats except when it was cold. His hair grew back pretty fast. It isn't as thick as it used to be, but it wasn't really noticeable unless you knew him really well. Now he's totally bald again, but this time it's from the chemo that he's taking.

As far as we can tell, David has not had any bad aftereffects from the radiation. If we had to do it all over again, I would want him to do radiation. We didn't really feel like we had a choice. It was either do radiation and risk maybe having bad side effects years later...or die a lot sooner.

I think that everyone's experience with radiation...and chemo, etc... is different, but for us personally, it was one of the more tolerable treatments that David has done.

Blessings to you,
Cindy in Salem, OR

ltaglio
Posts: 4
Joined: Jan 2012

I had a full course of radiation and chemo to treat my stage 4 glioblastoma last year. I am alive this year, almost a year since diagnosis because I learned about low dose naltrexone, a cheap prescription medication with an off label use for an assortment of autoimmune diseases, GBM being one of them. Go to lowdosenaltrexone.org and save lives by sharing the information you find there.

survivormannc
Posts: 17
Joined: Jan 2012

I actually tollerated the radiation quite well. It really didn't make me tired until I got near the end of my treatments. Each person reacts to it differently so take that into account. My hair thinned in 3 circles (where the beams were directed) dramatically but has since come back in full force. I shave my head so it all could have fallen out and I would be happy about it :).

ltaglio
Posts: 4
Joined: Jan 2012

I was diagnosed with a grade 4 glioblastoma in early February of last year. I had all the Temodar I could have along with radiation. I learned, after all these treatments plus surgical removal of 2.3 of a 5.5 cm tumor. I was deteriorating badly until I found low dose naltrexone.
Lowdosenaltrexone.org. I started taking this in November and feel like I may live many more years. Go to the website above and learn about this inexpensive prescription medication with an off label use for an assortment of cancers and other diseases. I am thriving because of it.

jon4156
Posts: 7
Joined: Jan 2012

Tell your father to ask his NO if Gamma-Knife is an option for him.

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