Looking for Glioblastoma Multiforme Stage 4 survivors (brain cancer)

I used to be a chef years ago, and still love to cook.  Learning healthier recipes and methods will be fun.

My concern is economic. If my condition remains excellent for 5-10 years what are the chances that my Social Security Disability will be cut-off? A few years from now at 59-years old, having no recent coorporate experience (which was all I ever had) nor a college degree (which I never had), my chance of re-employment at a profitable level would be nil.  I'm afraid I'd become quickly broke.

What are peoples experiences being cut-off from SS disability.  I've been diagnosed and treated for a Glioblastoma Multiforme. I've suffered consequences and am now being treated for a spinal metastasis. But what if it all goes very weel and Social Socurity removes me from any disability.  Is that possible?

On Apr 05, 2012 12:45 PM lsmith wrote:

I have posted on here before, you can probably go back and find my comments, they may be detailed, I don't remember, it could have been years.  In one month my husband will hit the 9 year mark of survival with a GBM.  We are BIG advocates of a vegan none processed diet.  Typically raw. 

You need to do your own research and think outside of the box.  He was told he only had 3-6 months when diagnosed.  He has been cancer free since December of 2003 per the doctors although we think it was earlier.  His only current issues are side effects that did not happen until years later.  While he did do "traditional" treatments in the beginning, he opted out early after we had discovered food as treatment.

I would avoid processed sugar completely and become a label reading junky.  Read "The China Study," see the DVD's "Forks Over Knives" & "Food Matters" and the one that followed it recently, "Hungry for a Change" (I think that's what it's called) 

It is my belief (From experience) that if you do the same things others do, you will likely get their results.  My husbands results are better than most... I'm sure their are better out there, but I think I have only hear of one.

If you live in Hawaii, you are blessed... there is a raw food following there and you should be able to find people to help guide you if you choose to do so.  We live in Ohio and had no one... We did it anyway.

Healthy blessings!

Lauren

Hi,

My husband is 73 years old and was diagnosed April 4, this past Tuesday.  His tumor was removed last Thursday, it was size of golf ball in left frontal lobe.  They want to do the radiation 5 days a week for six weeks along with the Temodar and then wait 3-4 weeks and do MRI, I suppose continuing the Temodar as we have only been to Radiation Oncologist.  I am wondering what quality of life my husband will have during treatment as he does not handle illness very well and is not a "fighter".  I know everyone is different but could you share some of the side effects?  You are truly blessed and I wish you continued success.  

Thank you,

Carol

Hi Carol,

Some people experience nausea and fatigue from Temodar and radiation. Those are the most common side effects. However, people are able to control these side effects by adopting some lifestyle changes.

For instance, it may help him to be on curcumin. The curcumin will help reduce the swelling caused by the surgery and the radiation. The curcumin will also help residual cancer cells to die.

In addition, it would be best if your husband eats lots of fruits and veggies - organics are best. Dark berries provide important nutrients that will help him stave off side effects.

He needs to avoid red meats (beef, lamb, veal, etc.) as those are not going to do him much good right now.

Processed sugars (including sodas) are a definite no-no. They will not just feed the cancer (whatever the surgery may have missed), but metabolizing the sugar will make him feel lousy.

And getting him walking will help him (if he hasn't been in the habit before now).

There is no reason why your husband's quality of life needs to be horrible during radiation and chemo. The trick is making super healthy adjustments to his lifestyle.

I take from your comment about him not being a "fighter" that the kind of lifestyle adjustments I'm talking about above will be really tough with him. I think you are just going to have to have a "Dutch Uncle" conversation with him and let him know - hey, it's either you do these things or you're potentially going to feel like a wet dish rag or worse during treatment. Ultimately, it's his choice.

I'll be praying for you and your husband as you both work to deal with your new reality.

All the best,

Jana

Me and my doctors have just learned of my new brain tumor.

The first was a GME totally removed successfuly from my left temporal lobe back in Jan. 11.  I underwent the 6-weeks of chemo/rariation the six months of weekly Temodar.

I just recovered from four weeks of spinal radiation.

Friday's appoint began with an MRI. During my appointment later that day with my doctor, she showed me the new tumor growing on the back of my brain sitting alongside the spinal column regions. She hopes to begin Avantin IV's later this week, rather than another direct brain tumor surgery. 

I'm devastated.

  

The best thing I ever did to control my seizures is go for a seizure study. I had to sleep in the hospital for a few days hooked up to all sorts of wires but my epileleptoologisy got me all straightened out and I no longer have seizures. I used to have them several times a day. There are so many drugs to try but when switching you should be under close monitoring. Best of luck, Kali

Did they talk to you about pseudotumors? Pseudotumors happen frequently and a lot of docs diagnose them as secondary tumor growth. This usually happens after the initial chemo/ radiation. These usually tend to disappear over the next few months. The reason I am telling you this is because it happened to Kroop whom I am a medical proxy. He was told a new tumor was growing and we went threw many options such as a second surgery, as well as other treatments which included avastin. We then went to Boston and saw the leading glioblastoma doc Dr. Patrick Wen. He suggested we wait because of the pseudotumors that tend to s how up on MRI post radiation. I'm glad we did because the area has shrunk doing nothing but temadar on a 28 day cycle with 5 days of oral pills and 23 days off. We also were told he had less than 9 months left. We are celebrating his one year post surgery this sat. The bottom line is avastin is something you want to keep in your back pocket when you are 100% sure something is changing for the worse. Good luck with your decision. But get a second opinion in either Boston Dana Farber or new York Sloan.

Hi Argos,

I have been speechless since reading your post on Saturday. This is really tough what you are going through and I am sorry you are facing this.

I think Kroops' medical proxy has a point - pseudo progression can happen. David Kuo (second-in-command of George W. Bush's $8 billion "Compassionate Conservative" plan to let religious groups wage war on poverty) had a scan that revealed significant regrowth, etc and he was given a horrible prognosis, but when the fog suddenly cleared, it turned out to be only pseudo progression.

But, since pseudo progression is not that common, let's look at the possibility that you are dealing with actual new growth. If you just do what everyone else does (which is stick solely to exactly what the doctors order), then you can pretty much expect exactly the same outcome - and the doctors are fairly direct about their predictions with that.  So, if you haven't already done this, you might want to look at changes in your lifestyle,  e.g., diet changing and adding supplements that will collaborate with and enhance what the doctors are doing. I hope someone by now has mentioned that there are certain things you can do yourself to do a real stomp job on the cancer cells. If you need some help with exactly what to do down to the dosages, I have recorded my son's very successful program on an Excel spreadsheet which I can send you via e-mail (no cost, no strings attached) if you just send me an e-mail atjana.piscio neri@verizon.net  (Of course you will need access to MicroSoft Office software to be able to read this file. If you don't have it, maybe someone you know has it.)

Again, I am very sorry you are having to go throught this.

You will be in my prayers,

Jana

Hi Jana & Kroops

The doctor's at HUP will have a group meeting about me later this week and then recommend my next step. The doctor I typically see is recommending Avastin; for the time being.

She says that another brain surgery at this point is risky for me due to the long recovery period. My first surgery was Jan. 20th, 2011. I finally finished the Temodar chemo treatent back in November.  Surgery now would be risky, leaving me quite low, so if another tumor also showed up in the near future I'd become in really bad shape. 

I'll be curious what Friday's meeting decides. Maybe they'll give me some months on Avastin, then if nothing else shows up the surgery might be OK then?

I'll find out eventually. Thanks!

 

 

Dear Argos,

You don't need to worry. They will NOT cut-off your disability, with you having GBM! I was in the same situation, and will reach age 65 this year, still doing good after almost 2 years from surgery.

Good luck to you and be patient, age 65 will come faster than you think!

Doraza

Hello,

There is a new GBM vaccine, google that.

I had surgery 21 months ago, and doing well, no growth. I am taking a part in Myou clinical traial and am on everolimus ever since. Seems to be working, so far.

Good luck to you,

doraza