My husband was diagnosed with GBM IV at the age of 51 in December 2010. He is my Life. I am terrified - but he is being so strong! We have five children and three grandsons. Husband diagnosed (dx) 12/05/2010 [left parietal mass]; Surgery 12/13/2010 [left parietal craniotomy and resection of the mass]; MGMT negative; radiation/temodar (160 mg) started 01/10/2011; last day of radiation/temodar 2/18/2011; MRI March 16. 2011[saw some whiteness: either false growth from radiation swelling or real growth]; March 16, 2011: Met with NIH for clinical trial consult: [Dr. Howard Fine recommended AVASTIN (every two weeks) with Metronomic Temozolomide/Temodar (100mg everyday]; March 17, 2011 oncologist appt [agrees with NIH Dr. Fine- about AVASTIN/TEMODAR!] March 22 – started AVASTIN/TEMODAR. Next MRI at NIH is April 25, 2010 (after three Avastin treatments).
UPDATE: NIH told us there is shrinkage and that we are moving in the right direction! So hubby will stay on Avastin/Temodar for another six weeks, then next MRI! THIS IS GREAT NEWS
MRI at NIH on June 6th, 2011 - we get the results Friday June 10, 2011. Praying for continuing shrinkage and total absence of mass!
UPDATE: JUNE 10TH - there is shrinkage visible to the naked eye! continue on same treatment - next MRI at NIH in eight weeks! hubby still working and feeling great!
8/01/2011 - Next MRI at NIH -
8/05/2011 - Clinic Meeting at NIH - UPDATE: still shrinking! continue on with Avastin/Temodar - next MRI in 8 weeks at NIH!
8/05/2011 - Hubby has been granted Medical Disability Retirement from Office Personnel Management (OPM). Yesterday was his last day at work. U.S. Customs and Border Protection (CBP), Human Resources Management, Retirement Branch basically showed him the door without any transition or preparation for this type of retirement. This is no way to treat people. It is very obvious people that worked his case have not a care in the world and do not want to understand the situation we are under. He has tried to call and email CBP with no responses. Even OPM has not returned his calls.
10/05/2011 - Next MRI at NIH
10/07/2011 - Clinic Meeting at NIH
MRI showed SIGNIFICANTLY SMALLER SIZE - keep on Avastin and Temodar! Next MRI in two months!!!
MRI @ NIH: NOV 30TH
CLINIC @ NIH: DEC 2, 2011. MRI shows STABLE no growth. We are counting our blessings. Next MRI in 8 weeks at NIH. Continue on Avastin/Temodar regimen.
MRI @ NIH: 1/25/2012
CLINIC @ NIH: 1/27/2012 – STABLE – No new growth. Hubby took himself off Temodar Dec 05, 2011 – said it made him feel terrible. He is MGMT negative anyway (so Temodar not expected to work as well).
NEXT MRI @ NIH in two months!
NEXT MRI @ NIH March 21
Clinic @ NIH March 23.
UPDATE: MRI IS STABLE! WE ARE TRILLED! Next MRI in two months!
Husband took himself off Decadron - very fatigued. But skin is looking much better.
5/10/2012: Husband simply not doing well without the Decadron - started back on 1mg a day with oncologist's blessing.
5/15/2012: What a difference Decadron makes! My husband is back and feeling so much better. Such a small pill but such an improvement!
NEXT MRI @ NIH
May 16, 2012 Clinic @ NIH –
May 18, 2012 - UPDATE: MRI IS STABLE! Next MRI in two months!
Trip to ARUBA - 7/8-12/2012! Trip was Fantastic!
NEXT MRI @ NIH July 11, 2012
Clinic @ NIH - July 13, 2012
RESULTS: new growth is shown on the MRI. Offered extremely experimental gene transfer clinical study [ EGFRvIII variant ]at NIH. We are going for it.
7/26/2012: husband undergoes Apheresis (to take the white blood cells out, modify them and grow them in the lab).
August 1-10, 2012: Cruise around England, Ireland and Scotland! Again, trip was awesome!!!
Aug 13th - scheduled to begin 3 weeks in NIH hospital - to wipe out immune system and reintroduce modified, retrovirus white blood cells that will target the mutant EGFRvIII variant on his tumor.
NEXT MRI @ NIH
Aug 14, 2012
08/22/2012: Tomorrow is "Day 0" for my husband inpatient at NIH Hospital in Bethesda. He will be returned his modified anti-EGFRvIII cells.
8/27/2012: husband off IL-2 now - platelets are low. Waiting for infusion of platelets; still inpatient at NIH Hospital in Bethesda.
We are waiting for his immune system to return to normal before he can be released...
9/03/2012: Husband discharged from NIH Hospital! No longer Neutropenic - but very tired.
9/24/2012: MRI @ NIH; Apheresis; 9/25/2012: Clinic apt to see status of clinical trial (if it worked).
UPDATE: 9/26/2012: Clinical Trial did not work. Tumor growth visable in only a month. NIH is recommending another surgery. We have consult with neuro-surgeon on 10/4/12.
UPDATE: 10/04/2012: Husband considered excellent candidate for second surgery. 2nd surgery debulking scheduled at Inova FairFax VA on Oct 22, 2012.
10/19/2012: 2nd Surgery postponed due to very low platet count (only 35 - need at leat 100 for safe surgery). Hope to have surgery within the next two weeks.
10/25/2012: hubby to have CBC done to see if platletts have rebound high enough so he can have second surgery. Results: Count was only 27 (need 100)- we go back in on Monday 10/29/2012 to check platletts again....
11/06/2012: Platletts still too low (28); second surgury has been post-poned indef. Checking platletts again 11/08/2012.
11/08/2012: Platletts up to 34 now! check again in two weeks.
Platletts now only 35.
12/05/2012: Hubby taken to Emergency with severe chest pains. Terrified. Suspected heart attack or blood clot. Tests confirm only (only?) pneumonia. Relieved. Prescribed Antibiotics and allowed to go home. Platelet count down to 26.
12/12/12: Platelet count back up to 34.
On the night of December 18, 2012, my husband fell down and I could not get him up. He said he felt dizzy and lightheaded. When my daughter arrived, we were able to pick him up and take him to Emergency. CAT scan showed bleeding around the tumor. He was Air evac’d to Inova Hospital in Fairfax, VA, where his neurosurgeon practices. MRI showed tumor growth from 5cm (Oct 2012) to 7cm (Dec 2012), tumor swelling and bleeding. He was immediately put on 18 mg of Decadron (6 mg every 8 hrs.) to bring down swelling. Platelet count still very low (19K) and surgeon requires 100K before he will perform second craniotomy. They gave him platelet transfusion of two bags: platelet count up to 97.
Platelet transfusions are only a temporary fix, since transfused Platelets only live 2-3 days in the blood, while our own plantlets that we make in our bone marrow, lasts 7-10 days. Surgery cannot be performed now, since even with a temp fix of transfused platelets, he could still ‘bleed out’ in the brain AFTER the surgery.
Radiation Oncologist will be performing radiation therapy again (10 sessions over three weeks – focused only on the tumor itself and not the surrounding tissue), in the hopes of slowing down the tumor growth while we wait for platelet count to rise to 100K. Radiation does not impact platelet count.
My husband came home with a walker and can no longer walk unassisted. His balance is shaky and he has double vision when he gets over-tired. I count my lucky stars that he is still cognizant, and aware. We can still talk and laugh. We started the Decadron decrease today. I am watching the man I love with all my heart, struggle, but still be so strong in spirit. I envy his strength. I know others on the board have more serious problems with their GBM stricken loved ones. I fear what is to come.
I buried my husband yesterday. Today is 1/16/2012 and I buried my husband yesterday in his home town. As a U.S. Marine, Master Gunnery Sergeant (E-9), he received full military honors (21 gun salute, 6 Marine Corp pall bearers, Bag piper and Taps with a live bugler, and more).
My husband fought so hard and kept so much of his pain away from me. I simply did not know he was not only battling GBM, but also has pneumonia and Shingles due to his weakened immune system. I kick myself for being so clueless. He protected me to the end, not letting me know just how sick he was and how much pain he was in.
1/6/2013; my husband was admitted to ICU at Walter Reed Military Medical Hospital in Bethesda, MD. He could not stand and no longer wanted to use his walker. He would stop himself from drinking so he wouldn’t have to get up and use the restroom. I realize now he was shutting down and slowly dying before my eyes.
When the hospital wants to monitor the brain, they do not give any pain meds, so that they can REALLY see what is happening in the brain. They found massive hemorrhaging visible around his tumor. His platelets were low again, which contributed to his brain bleeding. They gave him four bags of platelets – bringing his count up to 101. We consulted with Neurologists – based on the fact that my husband still could not manufacture his own platelets. The Neurologists told us that a 2nd brain surgery was now permanently off the table – due to the vascular nature of his tumor, he would bleed out on the table and die during surgery. The treatment option was more radiation, but surgery to remove the Beast would never happen.
If he could not verbalize his wishes, I had the legal power to stop or continue life-saving treatment; I can honestly say I would have continued treatment – selfishly wanting my husband with me and alive as long as possible, even if he were not conscious.
1/7/2013: Once the platelets were given the bleeding stopped and my husband was once more coherent/conscious, but still in terrible pain. Yet, his CT scans were no different in terms of the amount of blood and swelling in his brain. My husband understood that the second surgery would never happen. He spoke with the doctors and neurologists. His pneumonia was winning and there was an infection in his blood. Doctors wanted to place a tube down his throat so he could breathe better. After apologizing profusely to me, our children, and even his own brother (all present in ICU) he told the doctors he was “tired of fighting and wanted to die”. His words were clarified by the doctor. We were in tears but accepted his decision. For the first time in two days he smiled at us. Given two shots of Morphine, he was then put on a slow morphine drip, and pain was finally easing from my husband. We said our goodbyes, spoke of the good times we all had as a family, held his hands, spoke loving, comforting words that “it was ok, we love you.” Once again my husband protected me by taking the life/death decision out of my hands and I will be forever grateful.
Six hours later my husband, my love, my soul mate, a mere 53 years old, took his last breath. He was smiling and at peace. The Beast had won, the pneumonia acting to speed up his death. My husband chose to go out of the world on his own terms, and I am proud of him.
I fly home today to mourn the loss of my husband, our life together, and the years we have been robbed of.
My husband survived for 2.09 years post diagnosis, and we made the most of our time together. I miss you Babe, but know you are finally pain free and watching over me from above. I love you!