jon4156's Message Board Messages

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Hello, it has been some time since I contributed to this forum...Aug 22 last year, in fact, when my wife passed away.

My FACES OF BRAIN CANCER project is seeking photos of brain cancer patients, deceased or currently battling the disease, for my "TAKING BRAIN CANCER DOWN" deep dive where I will sleep overnight at the bottom of the Atlantic Ocean in my one-man submarine to raise money for brain cancer research. The photos will be affixed to the outside of the submarine hull to honor the patients and families impacted by this disease.  I need about 1500 photos to cover the hull of the submarine for this project.

I am asking for your help.  Would you please consider joining this project by sending a photo, name of patient, diagnosis date, and date of death (if applicable) to photo@facesofbraincancer.org and visit www.facesofbraincancer.org for the latest info.

All money raised by this event will be targeted for brain cancer research and collected by a trustworthy charity that will partner with the project.

GBM has taken my wife

by jon4156 - August 22, 2014

My wife passed away today 8/22 at 3:45am after a 3-1/2 year battle against GBM.

First diagnosis in March 2011, recurrence in February 2014.  Initial treatment was resection, radiation, Temodar for 12 months.

After recurrence she had another resection but suffered many complications not normally seen by most GBM'rs.  We tried Temodar again for 2 months but the cancer returned a third time.  At the end of May my wife made a concious decision to cease further treatment.  She entered hospice July 26th.

Except for the normal issues related to the dying process, my wife's death was uneventful.  Hospice kept her pain free and very comfortable throughout the ten days it took her to break free of the cancer.

I have no regrets about the treatment choices we made.  She had three fantastic years of high quality life after her initial diagnosis and treatment.  Her life after recurrence was very difficult and I also do not regret her decision to stop treatment.

I wish you all the best of luck in your own journey against this disease.  

Wife update

by jon4156 - July 23, 2014

My wife's GBM journey is heading towards an end.  We will be making a 1500 mile trip to the Florida Keys where we own a vacation home, to spend her final days.  Upon arrival hospice will be involved and we plan to spend as many days as we can watching sunrises, sunsets, and enjoying the evening air before she is taken from me.

She has endured a living hell since March of this year when we skipped our way into her second GBM resection.  Left side paralysis due to a stroke, pulmonary embolism, liver hemorrhage, seizures, and a nasty DVT later...we've reached the point where nothing more can be done and it's time to enjoy the time we have left.

I don't regret the fight...we kicked GBM's ass for 3 years and countered every punch it threw for another five months.  It will have the last laugh however as it wins the battle and takes my wife away from me forever.


Steroids are usually used to control inflammation of the brain.

Temodar is used to fight cancer cells.  It wouldn't make sense to use it for necrosis since those cells are already dead.  I cannot find any evidence that Temodar is used to treat inflammation or that it causes inflammation.

Bringing a notebook is a good idea.  Write down questions when they come to you so you can ask at your next appointment.  Write down info the doctor tells you so you don't forget it later on.

Be polite, respectful, but assertive with the doctor.  If you don't understand something just say, I don't understand please repeat that.  Or literally ask them to speak in "plain language" so you can understand.  I never leave the office with any questions because it's too important to make sure the care you give at home is performed correctly.

A general GOOGLE search of medical terms will typically get you all the references you need.  Some folks in this forum are pretty good with understanding or researching medical terms so ask here as well if you can't find it yourself.


The only clinical study performed to determine the maximum duration of effectiveness for Temodar lost funding six months into the trial.  So six months became the defacto standard for maximum use of Temodar.  For the most part there is very little gray in medical science.  It is primarily black and white.  If there is no acceptable study showing that Temodar works any better if it is taken for 12 months then it is simply an unproven theory.

Most doctors and medical institutions will not stray very far "out of the box" to experiment on you for fear of you suing them when things don't go right.  So some doctors follow accepted practice strictly and only provide Temodar for six months because when challenged they can always fall back on this one clinical trial as evidence that they acted appropriately.

Over time, "experimentation" by doctors (not clinical trial) has shown few negative effects of expanding 5/23 Temodar use to 12 and 24 months.  The NO at Mass General in Boston that we use for second opinions told me that 48% of doctors prescribe Temodar for 12 months, 48% prescribe it for 24 months, and the rest prescribe for less than 12 or more than 24.

So the length of time you or your loved one is on Temodar is primarily determined by the comfort level of your own doctor.  Temodar use can lead to leukemia which is one reason most doctors will not allow a patient on the drug for more than 24 months and why you get a blood test every month when you are on Temodar.

The bottom line from a medical perspective is that nobody can definitively state using Temodar for more than six months is any better than limiting it to six months, because there is no official study showing that to be true.


Just gave my wife her 2nd cycle of Temodar for this recurrence.  I call it 2.2, 2nd GBM, 2nd cycle of Temodar.

A CT scan Monday (12th) confirmed a large mass in her liver.  NO and radiologist are not sure if it's metastasis from the GBM (very rare) or a liver specific cancer.  She'll have a biopsy Monday (19th) to determine the source.

NO says he has only seen two cases of GBM metastasis in his career.  Well, let's see, NueroSurgeon said only 4% chance of stroke during brain surgery, which my wife had.  And said her recovery should be faster than the first surgery back in 2011, which it wasn't by a loooooooooong shot.  Anyone taking bets on my wife being the third case her NO is going to see for GBM metastasis?

Know what our reaction was?...we didn't have one. 


I'm sorry to hear this news about your son.  If temodar failed and Avastin is not an option then the options are very limited.  Whether to install a shunt will be a tough call.  If he doesn't you may find that the additional fluid in his head causes disabilities and headaches that would otherwise be avoided.  However the risks, such as infection as someone else mentioned, would result in requirement of medical intervention at a time when he is weak.

We're sort of in the same boat.  I'm giving my wife Temodar in about five minutes.  An MRI in june will determine if it's working or not.  If not, I'm afraid we'll get word that it's time to make a tough decision.

Prayers for you both...


Well today's doctor visit did not go as well as we hoped. My wife had a CT scan for the liver lesion that was found a month ago when she had a pulmonary embolism. Today's scan determined THAT lesion was nothing, but it also found a new large lesion (about a third of the liver) that is not on the surface but interior of the liver and is very suspicious. She'll need a biopsy, probably in a week or so. Chemo for the brain tumor will continue this week. 

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About jon4156

Brain Cancer
Cancer Treatments, Chemotherapy, Conventional Treatments, Radiation

My wife (age 48) was diagnosed March 21, 2011 with GBM-4 in the right temporal lobe after suffering a week of severe headaches, nausea, fatigue, and general confusion. She went to her doctor on March 17 complaining about her symptoms and the doctor assessed it as a viral infection. Symptoms remained on March 21 and she could barely function so I made another appointment early that morning and saw a different doctor. He took one look at her, asked a few questions, and said "this is no viral infection" then told me to bring her to hospital emergency room immediately. MRI and CAT scans showed presence of tumor and she was transported to a Tier 3 hospital. She spent one week in ICU to get her brain swelling under control and had a craniotomy/resection on March 28, 2011. Almost all of the tumor was successfully removed. The only side-effect of surgery was some light weakness on left side, particularly left arm and hand. Released from hospital and entered rehabilitation on April 1, 2011. One week of rehabilitation returned most of her functionality lost to surgery. Released from rehabilitation on April 8, 2011.

We were offered an Avastin clinical trial for newly diagnosed tumors. What to do?? Performed LOTS of research and read MANY medical journals and trial results. Got "second" opinions from three highly rated doctors in three different hospitals. We declined the Avastin trial at this time due to potential side effects with the drug and the fact it would exclude her from the Novo-Cure trial after radiation was complete. We opted for standard treatment (radiation and temodar) with the intent of participating in the Novo-Cure clinical trial afterwards.

She finished radiation and Temodar on June 14 with no major side-effects. She experienced fatigue, hair-loss, loss of appetite (nothing tasted good anymore) and occasional nausea. Zofran easily controlled the nausea. She was anti-red-meat for about 8 years prior to her diagnosis but post-surgery found cheese-burgers being one of the only things she found pleasant to eat (yeah mcdonalds!).

June 27, 2011. She returned to work and is currently doing very well. Almost all food tastes good again and fatigue has passed for the most part. Still occasionally feels nausea depending upon certain food smells, but Zofran corrects this easily enough. She is glad to be back at work and feels less fatigued because she is not sitting around the house doing nothing.

July 13, 2011. MRI results. Images look good, no indication of recurrence.

July 29-Aug 2, 2011. Started adjuvant temodar (260mg) and handled it very well. A bit more fatigued than usual and also vomited two days (one time each day). The worst effect is that food not tasting good has returned. Any kind of pasta is ok, plain fish is ok, plain chicken is ok, and cheeseburgers are ok. Everything else makes her nauseous just smelling it.

August 25-29, 2011. Second round of adjuvant temodar (260mg) and handled it very well. Fatigued, but not as much as the previous round. Vomited only once, two days after completing the cycle. Smell and taste not affected so much this time.

September 22-26, 2011. Third round of adjuvant temodar (340mg) handled very well. No vomiting this month although some nausea was present. Kytril and Zofran do a good job controlling the nausea. Certain food smells will make her nauseous, but enjoying almost all foods now. Still working although her performance is reduced.

October 15, 2011. Labs and MRI results. Images look good and no indication of recurrence.

Will update this area as things progress.

Major Milestones
March 21, 2011 - Diagnosis GBM-4
March 28, 2011 - Craniotomy and resection
April 1, 2011 - Released from hospital to rehabilitation
April 8, 2011 - Released from rehabilitation to home
May 3, 2011 - Start radiation and Temodar
June 14, 2011 - End radiation and Temodar
June 27, 2011 - Return to work
July 13, 2011 - First post-radiation MRI. Images are clear, no tumor progression.
July 19, 2011 - Apply for Novo-Cure clinical trial.
July 20, 2011 - Denied Novo-Cure device due to randomization.
July 25, 2011 - Back to original oncologist. After reading the MRI he said it was the best he has ever seen in his life. All clear at this point.
July 29, 2011 - Adjuvant Temodar, first 5/23 cycle.
Aug 25, 2011 - Adjuvant Temodar second 5/23 cycle.
Sep 10, 2011 - MRI & MRS scans
Sep 15, 2011 - Labs & Checkup - MRI scans are clear and doctor says he could not be happier with the results so far.
Sep 22, 2011 - Adjuvant Temodar, third 5/23 cycle.
Oct 11, 2011 - Labs & Check up. All blood work is good. Experiencing severe pain in legs at night. Doctor thinks it might be fibromyalgia and will test for this on 10/17/2011.

Next milestone:
Oct 17, 2011 - Blood test to see if we can find source of her nightly leg pain.
Oct 20, 2011 - Begin fourth cycle of adjuvant Temodar (340mg).

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