Diagnosis: Glioblastoma Multiforme 2002
February 11th, 2002:
My Father, Andy Posa (b. 1941) is a retired automotive engineer. At age 60, he was renovating my Grandmother’s kitchen, when he experienced an unusually sensation that made him stop working, he knew something was wrong and had difficultly speaking.
He called me; I concluded a stroke from his symptoms. I quickly called 911, in the hopes of having anti-stroke medicine administered. At the hospital, Andy experienced a grand mal seizure.
A MRI confirmed a 1cm spot on the left side of his brain (speech area). We left the local hospital for better treatment at UofM, where we met Dr. Lawrence & Dr. Junck. A board of Doctors considered Andy’s case and decided to wait & see.
Andy experienced another seizure before the wait period was over; a needle biopsy was performed. GBM was confirmed by the presence of tiny glioblastoma fragments, vascular tissue along with the advance rate of growth (1 to 2cm). Due to the tumor’s location, surgery was not an option.
My poor Father has already experienced the horror of a brain tumor, by losing his Brother, Louie in 1971 at the young age of 33 (leaving 4 young children behind). My Father also lost a Brother to metastatic bladder cancer.
Note- Louie’s hospital records were open by Dr. Junck (thank you). Louie suffered with seizures for 6years and a resection surgery was performed near the end of his life. The tumor apparently began as a slower growing Anaplastic Astrocytoma that progressed into a GBM.
Interesting – the same highly vascular comments were noted.
April 11th, 2002:
Andy is having trouble retrieving vocabulary; it is difficult for him to carry on conversation (he is very aware and knows what is going on). We are working with the best - UofM Ann Arbor Neurology department under the care of Dr. Junck.
We have decided to “fight like hell” - Chemo & radiation & another Chemo - simultaneously. Thanks to online Medifocus (well worth the $20), we learned that studies have shown that radiation opens the blood brain barrier and helps the chemo penetrate directly to the fast growing tumor. Survivor stories from www.virtualtrials.com (especially Dr. Ben William’s story, article & future book) fuel our fight and we see many common traits between survivors; radiation & multiple chemos & the will to live.
Andy has completed his second week of radiation; he has done one round of Temodar and we will begin a second round next week.
May 22nd, 2002:
Andy has completed standard radiation treatment on Monday May 13th and two rounds of Temodar chemotherapy. Neurologically he has a karnofsky score of 90, he had a score of 60 at the beginning of his treatment. The tiring side effect of the radiation was evident during the last two weeks. The chemotherapy side effects are none existent or possibly masked by the radiation effects.
Andy has also started re-taking the blood pressure medicine, Verapamil (with the hopes that it will allow the chemo to remain inside the tumor cells). He eats well (no alcohol, low sugar and plenty of fruits & vegetables) and gets exercise as much as possible, although difficult with his low energy level.
But the fight is not over, we feel that the tumor has only been "set back" and we continue to battle the tumor with therapy. We have been in contact with the Duke Brain Tumor Center and if necessary, we are prepared to switch treatment centers.
We have persuaded Ann Arbor to hold off on a waiting period (to see if the tumor is still growing) and to continue treatment. Dr. Junck has prescribed a larger dose of Temodar with simultaneous Accutane (Acne medicine). Studies have shown that the acne medicine, Accutane has a mechanism for fighting cancer, which tricks the tumor cells into behaving like normal cells. Accutane has been known to cause depression in 10% of the population and my Father signed documents recognizing this fact.
He is talking much better and scribing words.
June 20th, 2002:
Andy has been suffering from chest pain & back pain. Friday night @ 3am we were released from the E.R. with prescribed muscle relaxors for back muscle spasms. Still in pain, he returned Saturday to the E.R.; Andy was diagnosed with pneumonia and admitted to the hospital. Tuesday afternoon, Dr. Junck diagnosed lung blood clots to be our problem (a pulmonary embolism).
After ultrasound of his legs, chest X-ray, radioactive dye and a full body X-ray - blood clots have been diagnosed. Blood clots are common for some brain cancer victims; the mechanism is not well understood.
Andy has been prescribed two methods to stop the pulmonary embolism; blood thinners reduce the likelihood of clot development, while a Greenfield filter halt the clots from traveling to the lungs. Andy has had a filter inserted into his inferior vena cava to catch clots from traveling to his lungs.
Andy’s pulmonary embolism was aggravated by the lack of walking when recovering from pneumonia. Being bedridden, blood is more likely to solidify and clot, especially in the lower extremities (legs).
Andy recovered and Dr. Junck prescribed intravenous BCNU (heavy duty chemotherapy), we are very hopeful; many of the GBM survivors have been treated with BCNU or CCNU.
July 10th, 2002:
On Andy’s 61st birthday, he receives a dose of BCNU chemotherapy. This is a good sign because his health is good enough to receive this heavy-duty cancer poison. He has been out of the hospital for about a week after the blood clot and pneumonia treatment. He has been doing better everyday since. Andy has Doctor’s orders to walk to keep the blood moving, but when he walks his legs swell up. He tries to walk twice a day.
August 5th, 2002:
Andy has been having trouble speaking. At his Doctor’s appointment, an emergency CT was performed, and no bleeding was detected. Bleeding is a major concern due to the prescription of blood thinners. Brain swelling has been observed and his steroid prescription has been significantly increased.
The prescription change has been beneficial. He has reacted well to the first three weeks of BCNU. He is cold and tired. My Father is walking several times a day.
August 30th, 2002:
On August 21st, my Father received a new MRI scan. The tumor’s size has increase by approximately 10% - the BCNU chemotherapy is not working and Dr. Junck does not recommend a second dose. My Mother & Father were crushed with the results; we had high hopes for BCNU. We discussed another dose of BCNU, because we read that it may take more than one dose of chemotherapy to gain effectiveness, but we followed Dr. Junck’s expertise & experience.
Dr. Junck has "opened his tool box" to us, with his approval we can pick and choose our cancer poisons. For our next attack, he has recommended Procarbazine, which we have decided to take with Celebrex (thank you Dr. Junck & Dr. Williams). You have probably heard of Celebrex, an arthritis medicine that is a potent anti-angiogenic agent (inhibits new blood vessel growth & development). My Father's tumor is "highly vascular" which is a characteristic of high-grade tumors, by stopping the growth of blood vessels; the tumor's growth is slowed. One component of the inflammatory process is angiogenesis; my Father's speaking difficulty is from brain swelling. Celebrex may also reduce brain swelling.
We are changing our course and adding alternative medicines to our treatment. Being an engineer- I am a skeptic, but there is a lot of research out there that has significantly increased my confidence with alternative medicines. I have gained great hope from Dr. Ben Williams, a GBM survivor who has recently published a book, Surviving "Terminal" Cancer - please, if you know anyone that is faced with this horror, please purchase.
My Father has begun taking the following alternative supplements:
- Genistein is the major anti-cancer derivative of soy. It is an anti-angiogenic agent. Andy is taking 6 large pills (Mega Soy) from www.LEF.org per day.
- GLA (gamma Linolenic acid – 3grams/day) is an essential fatty acid found in certain seeds, which is highly cytotoxic to many different types of cancer cells (hopefully my Father's).
- Melatonin is a naturally occurring hormone that boosts the immune system and may also be a cancer cytotoxin (20milligrams before bed).
- PSK (polysaccharide krestin – 3grams/day), which is a coriolus versicolor mushroom extract, this is a standard component of cancer treatment protocol in Japan:
- Boost immune systems
- Anti-angiogenic agent
- Inhibition of tumor invasion into adjacent tissues
My Father is taking mega doses of these products which may be obtained from the Life Extension Foundation (www.lef.org), there are many products on the market, quality and concentration are very important.
The Life Extension Organization is non-profit and focuses their funding towards alternative medicine research. Their research is on the website & is easily reviewed (mostly animal testing). I feel lucky to have the LEO, there is not enough money for drug companies to research alternative medicines, and someone has to do it. As bleak as this disease is - the alternatives look as or more favorable than the standard treatments.
Sept. 20th, 2002:
Andy is in his 3rd of four weeks of Procarbazine, his speech and energy levels continue to improve. Dr. Junck is pleasantly surprised in his health improvement (especially during chemotherapy) and he feels that the procarbazine may be helping. After this round of Procarbazine, my Father will take Accutane during the four-week wait period before the next MRI.
Oct. 18th, 2002:
After a morning MRI, we met with Dr. Junck. I was expecting the worst, my Father experienced a scary seizure several weeks back, and although he continues to walk, his speech has declined.
After an hour of neurology testing and a half an hour wait while the Doctors reviewed the MRIs. We were pleasantly surprised that the tumor has not grown. Dr. Junck has pointed out the area of concern, a small peninsula that sticks out a centimeter from the front of the tumor. This area was present in the last MRI, but it is the newest anomaly.
Brian swelling is very present; the anti-swelling steroid has been increased to 16mg. Seizures and loss of speech are my Father's major concerns.
For me, the good results took a day to soak in - some good news, we are making a difference! My Father is taking many anti-cancer medications & supplements, we do not know which one or mixture is making a difference - so we will repeat 100% of what we did before:
8 Week Conventional Treatments (thank you Dr. Junck):
- 4 weeks Procarbazine/ 4 weeks off
- 3 weeks Accutane/ 1 week off
- Celebrex continuously
Natural Supplements (thank you Dr. Ben Williams):
- Melatonin, Genistein, GLA & PSK
Nov. 13th, 2002:
We are on an "up". Last Friday, my Father used the word, "GREAT", to describe how he felt. His speech is better; he is having difficulty finding words. I have noticed that Andy moves quicker and seems much more agile. Also, when eating, he finishes his plate, even during the Procarbazine chemotherapy.
Dec. 12th, 2002:
Good news, the MRI scan is showing no growth and greatly reduced swelling! This is the second scan with no growth. The Family is very relieved, especially my Father, he has had difficultly sleeping due to the anxiety associated with the new scan.
We will continue the Procarbazine chemotherapy, along with all the other therapies - it is very difficult to conclude the effective therapy, we believe that a little of everything is doing the job.
Feb. 6th, 2003:
My Father continues to gain strength, energy & vocabulary.
Good news, yesterday's MRI scan is showing no growth and reduced swelling! This is the third scan with no growth. We will continue the Procarbazine chemotherapy, along with all the other therapies. Dr. Junck feels that the tumor is alive, but not growing due to the chemotherapy.
Due to the improvements during the neurological testing and the reduced swelling, the steroids have been dropped to 8mg and maybe to 6mg within four weeks. Side effects due to long-term steroid use include bone lose (mega doses of vitamin D have been added to Andy's therapy to combat bone lose).
March 28th, 2003:
Good news, yesterday's MRI scan is showing no growth and reduced swelling! This is the fourth scan with no growth. We will continue our current therapies, 100% exactly. We compared yesterday's MRI to 2 months earlier; it looks slightly better, but barely noticeable. But when compared to December's - the reduction is very evident!!!
Dr. Junck feels that the tumor is alive, but not growing due to the chemotherapy. Dr. Junck seemed optimistic and discussed the long term Procarbazine regiment from one year to up to one and a half years.
Due to the improvements during the neurological testing and the reduced swelling, the steroids have been dropped again from 6mg and possibly to 4mg within four weeks.
May 7th, 2003:
This last dose of chemo has been very hard on him. Several weeks ago, he fell during a walk on Manhattan, he received stitches and looked like he was in a bar fight. My Mother and I were concerned that maybe the fall was due to the tumor affecting his coordination; his speech was declining during this time.
My Father has been checked into a New York hospital for pneumonia. His immune system has been weakened by the chemotherapy. He is on IV antibiotics, his speech is good and I feel that he will be out soon.
May 28th, 2003:
The great news - the tumor continues to diminish and Andy is back home.
The bad news - my Father must endure another round of Procarbazine chemotherapy.
The good news - there is a light at the end of the tunnel. Dr. Junck feels after 8 rounds of Procarbazine, we could stop taking chemo and see what happens. This next round is my Father's 6th, which puts us at autumn for being chemo free.
As I have wrote earlier, this last dose of chemo has been very hard on him. I wish we could stop taking Procarbazine.
July 24th, 2003:
The great news - the tumor is significantly smaller, we are very lucky.
My Father must endure more rounds of Procarbazine. His white blood cells are a little low; he will wait for his blood parameters to pick up before the next round of chemotherapy.
Sept. 30th, 2003:
The good news - the tumor is slightly smaller.
The great news - the tumor is smaller, without chemotherapy!!!
The good news - Andy is off the anti-swelling steroids.
Andy's white blood cells are even lower; my Father cannot receive chemotherapy. I try to keep in mind that this is a blessing in disguise, maybe the tumor is dead and he does not require chemo anymore!
Andy is cold and tired, but eats well. Dr. Junck is scheduling more blood tests to determine if the steroids have affected his adrenal gland and/ or pituitary glands.
Dec. 23rd, 2003:
My Father continues to heal and the tumor is significantly smaller. His 8-week occurring UofM appointments have been backed off to every 12 weeks. My Father's white blood counts are still low and he is not taking chemotherapy.
March 29th, 2004:
MRI scan shows no growth. My Father’s white blood counts are low and infection is an issue. In few individuals there is a connection between low blood counts and Dilatin use. My Father will be slowly weaned off Dilatin with the addition of Keppra as a new anti-seizure medicine.
November 29th, 2004:
My Father fell asleep and could not be roused. We was received by UofM ER and admitted to Neural ICU. MRI-S revealed great swelling and a 2cmX2cmX2cm tumor on his right hand brain side, deep within the optical vicinity. This new growth is on the opposite side from the old growth.
January 4th, 2005:
Andy is at home under the great care of my Mother. We are contemplating Procarbazine chemotherapy. He is taking many medicines for symptom control, Accutane, Celebrex and the following natural supplements; Melatonin, Genistein, GLA & PSK.
February 21st, 2005:
Andy completed a round of Procarbazine on February 17th, he is no longer well enough to be cared for at home; he has been admitted to UofM Ann Arbor Hospital. He has not been conscious for several weeks and has lost the ability to swallow. My Mother is staying by his side.
February 23rd, 2005:
Andy passed away peacefully at UofM hospital.
My Father’s journey has been a long roller coaster ride with many low points. There were dark times when we were instructed to “throw in the towel”. I cannot credit one treatment for Andy’s success, but here are the major contributors (There is no order of importance):
- Friend’s & Family’s thoughts & prayers
- Andy’s Will to Live & endure the treatments
- Dr. Junck & UofM Hospital
- www.virtualtrials.com (especially Survivor Stories)
- Dr. Ben Williams & his book, Surviving Terminal Cancer
- www.LOF.org (supplier of high quality & concentrated supplements)
- My Mother’s persistence & attention to details
- Healthy living; no alcohol, low sugar diet and many fruits & vegetables.
In retrospect (hindsight being 20/20); we would have done the following:
- No radiation or Temodar
- Procarbazine, Accutane, Celebrex & Tamoxifen
- Walk, walk & walk (especially with Tamoxifen)
- PSK, GLA, Melatonin & Genistein
- Healthy living
- Spend more time with Dad