Diagnosis: Oligodendroglioma, multi focal, Grade 2 ,3 - AUG 13, 1997
Last Updated: 2/16/2013
When life throws you lemons……..throw them back. Forget about making lemonade!
August 13. 2012 - Celebrate 14th tumorversary. Oligodendroglioma, multi focal, Grade 2 ,3
Multi focal essentially means that the tumors are not one tumor, but multiple tumors (lesions) in the brain. Mine are in the parietal lobe, the frontal lobe, the occipital lobe, and the pons.
AUG 13, 1997 and FAST FORWARD TO AUGUST 13, 2012.
A/K/A Abbreviated Story: Heading towards my 50th birthday when,………life changed.
60 MRI scans of the brain, 1 CAT, 1 PET. Lots of gadolinium dye injected over the years.
Luckily, neither renal impairments nor allergic reactions to date.
How did I find out I had BTs?
ACCIDENTLY. Experiencing low neck pain for several months (I attributed to an auto accident) that did not respond to chiropractic or physical therapy, my chiropractor ordered an MRI of the neck. She spotted a suspicious white spot at the base of the brain that was incidentally captured on the MRI. This initial scan revealed I had a Chiari Malformation. A full brain scan was subsequently ordered. I had the scan done July 1997. The technician brought the films out to the room where I was waiting; he routinely said, "Oh, you have MS or brain tumors". Handed over the scans and walked away. That was the start of many crying jags, anxiety attacks, depression, whole body tremors and other manifestations of mind and body responding to something so totally unexpected. I recall driving back to the doctor's office that afternoon: Hope it's brain tumors and not Multiple Sclerosis. I had never met anyone with a brain tumor; however, I knew several folks with MS and the devastating impact of that disease. And now, 14 years later, I am still thankful that the diagnosis was not MS. In 1989, I had been diagnosed with Olliers Disease, a rare disease that affects the long bones. I still have tumors in various bones; but, the only surgery to date has been the harvesting of bone from my hip to insert into the middle finger when the tumor had eaten the inside of the bone (Nov. 1989)
For the weeks following the second MRI ( July 1997), I was seen by several doctors and ultimately referred to the NJ Neuroscience Center at JFK Medical Center, Edison, NJ, the only facility where I have been treated. With the exception of a PET scan done at Sloan Memorial in NYC in 1997, I have had all my treatments thru JFK, including three hospitalizations. My neuro-oncologists at JFK were always open to my interest in second opinions, but I opted to continue the course we had charted. At no time have I regretted my decisions.
- 1997 Aug 13 Stereotactic Brain biopsy. Confirms brain tumors: oligodendrogliomas
(Multifocal) grade 2. Learned how to say and spell it after a few months!!
At that time, genetic assessment of tissue was not routine; thusly, unknown
status of chromosome deletions. Surgery at the JFK Medical Center.
- 1997 Oct 11 First seizure. Hospitalized four days each time. Severe allergic reaction to dilantin;
tegretol substituted. MRI scans quarterly. WAIT AND SEE! WAIT AND SEE!
This would be my battle cry for the course of the disease.
- 1998 Don't recall date. I joined the Central NJ Brain Tumor Support group. Group met
monthly. It was and is an outstanding resource: guest speakers, survivors, doctors
and their caregivers. Interacting with survivors on a one-to-one basis, sharing tips on
side effects of the disease and the treatments, was invaluable. Brain tumors were not
an " in vogue" disease; thusly, the media and the unknowing public knew little about
the disease: impact on memory, learning, emotions, vision, hearing, balance, and all
voluntary and involuntary physical actions controlled by the BRAIN!
- 2000 Dec 19 Decision time. Tumors were growing, enhancing. Options presented: surgery, or
various chemotherapy options: BCNU, PCV,CCNU and Temodar. Radiation was
mentioned, but not recommended. Surgery was "iffy" because my tumors
were not solid masses, but infiltrative: cancer cells mixed in with good brain cells.
I have been experiencing symptoms several months prior: balance loss,
double vision, memory lapses, tripping on my own feet, fatigue, incontinence,
concentration issues, depression and emotional outbursts. I attributed these
symptoms to my high pressured career and changes in my personal life. Since day
one, I educated myself about brain tumors; thusly, I was not surprised when
treatment was required. The brain tumor support group I participated in was an
excellent source of information and emotional support.
- 2001 Jan Temodar was my poison of choice. Just recently out of clinical trials involving highly-
aggressive glioblastoma multiforme (GBM) tumors, it appeared to have the least side
effects and was available in pill form. Thus, it could be taken at home, allowing
continuation of full-time employment. The initial course of treatment was planned for
12 months on a "5 on/28 cycle" – five days of treatment followed by 28 days of no
treatment. Dosage was 250 mg pill.
Initial course of treatment planned for 12 months. Blood tests monthly.
- 2001 Hospitalized twice. Temodar and I had differences to iron out, such as the best time of
the day to take the pills ( morning administration resulted in the nausea, vomiting and
dehydration which lead to both hospitalizations). And while things "came up" very easily,
the side effect of acute constipation has always plagued me. Tried every constipation
remedy know to humankin; 99% failed.
MRIs every two months. Blood tests monthly. I eventually learned not to faint !
- 2001 April 23. MRI Reads: A LARGE AREA OF ABNORMAL SIGNAL IS SEEN INVOLVING THE
PONS AND BILATERAL BRACHIUM PONTIS. THIS LESION MEASURES
APPROXIMATELY 6 cm. X 3 cm. X 2 cm. ALSO SEEN IS A LARGE LESION
INVOLVING THE LEFT OCCIPITAL AND PARIETAL LOBES, BOTH GRAY AND WHITE
MATTER. THE LARGE MEDIAL LESION MEASURES APPROXIMATELY 7 cm x 3cm x 3
cm.
THE SMALLER MORE LATERAL LESION MEASURES APPROXIMATELY 2 cm. IN
DIAMETER. THERE IS CLEAR INFILTRATION OF THE CORPUS CALLOSUM.
- 2001 Nov 26 MRI reads. FOCAL SUBCENTIMETER LESION OF RIGHT MIDDLE CEREBELLAR
PEDUNCLE...LEFT CEREBRAL HEMISPHERIC, RIGHT PONTINE AND RIGHT CEREBELLAR
HEMISPHERIC LESIONS. NOT CHANGED IN SIZE COMPARED WITH PRIOR MRI, NO
BLOOD BRAIN BARRIER BREAKDOWN IN PONTINE AND RIGHT CEREBRAL….
- Jan 2002 Temodar continues 5/28 MRIs every three months. Switched to Keppra.
- Jan 2003 Temodar continues, cycle 13. What happened to that 12 month plan ??????
- Jan 2004 Temodar continues. Will it never end? Now into the 3rd year of treatment.
- Jan 2005 Temodar will be stopped. Blood is showing impact of the long term use.
- Feb 2005 48 Consecutive cycles of temodar. FINI!! FINUTO!! OVER AND OUT!!
- 2005-06 Quarterly MRI scans; anti-seizure medication Keppra. CURED? WRONG!
- 2007-10 MRI scans continue. Every six months. Surely I am cured!
- I think I am cured in 2010. I've reach the 5 year mark! Stupid me.
- 2010 May 9 Worrisome changes. Clinical notes: "some progression involving the left
parietal occipital lesion" Scans now quarterly. Fortunately, no symptoms. Reducing
Keppra dosage, as no seizures in years. Why burden the body with more pollutants.
- 2011 Feb 21 Decision time. Clinical notes:"…. a further progression with some faint
enhancement"
Options: Gamma knife, chemo options. Continue reducing Keppra. Resumed Temodar
5/28 cycle at 250 mg No new options for my oligos!! Clinical notes of my doc:
"The patient understands the possible risks of secondary malignancy with long-term
chemotherapy use. I (doc) discussed once again during the visit the risks of possible
secondary malignancy with prolonged use of Temodar. We are mostly concerned about
blood born malignancy such as leukemia. Cases of myelodysplastic syndrome and
secondary malignancies including myeloid leukemia have been observed."
- 2012 Feb Round 14 of the temodar. Keppra eliminated. MRI shows stable disease.
- 2012 June 18 MRI Reads: LEFT PARIETAL-OCCIPITAL, LEFT FRONTAL, CORPUS CALLOSUM, RIGHT PONS/MIDDLE CEREBELLAR PENDUNCLE LESION APPEARS SIMILAR. NO MODULAR ENHANCEMENT SEEN. CEREBELLAR TOSILS LIE JUST BELOW THE FORAMEN MAGNUM. STALE TUMOR BURDEN. NO NEW ENHANCING LESIONS SEEN.
- 2012 June 20 Asked my neuro-oncologist " When will I be cured?". Never.
June MRI = stable disease.
- 2012 July Round 19 of the temodar.
To date: 67 rounds of temodar. Only surgery was the 1997 stereotactic brain biopsy; no radiation; no chemo other than the temodar. Treatment center: NJ Neuroscience Institute at the JFK Medical Center, Edison, NJ. Dr. Joseph Landolphi neuro-oncologist since mid 2005. Angel nurse, Patty Anthony, who has been with me since my very first visit to JFK in 1997.
Debbie, my efficient pre-cert admin at JFK. Gail, Maria, Sofie, Irene, and many more.
OLIGODENDROGLIOMAS. Represent 2-3% of all primary brain tumors. Estimates are for 66,000 new diagnosed patients with primary brain tumors this year, or, 1,300 - 1,900 newly diagnosed oligodendroglioma patients. (American Brain Tumor Association statistics). The National Cancer Institute only anticipated 22, 910 people will be diagnosed with cancer of the brain in 2012 ( NCI considers Grade 2 and up as cancerous). From day one of my journey, I found no consistency between the various organizations involved in keeping statistics on brain tumors. There is even divergence in the grading: ABTA grades 1 and 2 as benign tumors; NCI grades 1 only as benign.
OVERALL, I have been fortunate. I have tolerated the chemotherapy well over these years; have missed little time from my career. My clients, co-workers have been as supportive as my family over these years. When I could not drive to work because I was concerned with my double vision, a friend drove me to work each day. Other co-workers drove me home at the end of the day. My career in financial services (am self-employed) required that I travel to client's homes or businesses on occasion. I was extremely fortunately to have friends and co-workers provide me the needed transportation.
Keep positive; keep engaged; keeping doing the things you enjoy, and new things. Make the bucket list and start checking off the completed adventures.
I am fortunate to be a long term survivor. Steep financial and emotional challenges have been encountered (out-of-pocket medical this year will approach $30,000). But, I can look back over this journey, and my motto remains:
" NO LEMONADE. I'VE LEARNED THE VALUE OF SUCKING LEMONS".
Update: 2/16/2013
As of the December, 2012 Temodar cycle # 24, my neuro-oncologist has given me a reprieve. So, no more treatments until the results of my next MRI are done in early May, 2013. The results of the January, 2013 MRI indicate that the tumors are still there, but they are no worse than the prior scan. As long term use of the drug is being linked to some cases of leukemia, I believe the doctor and I are both in agreement that, if the disease can remain stable for awhile without treatment, then that is the best course at this time.
Also, a chemo-free three months will give me the opportunity to address some of the other medical issues that I have placed on hold: such as potential surgeries on my knees for ligament and meniscus issues.
Of course, there is a side of me that wonders if the tumors will grow without the Temodar over the four month period without treatment. From other survivors and internet groups, this is a common concern: if the treatment is working, why stop it; and yet, are we sure the treatment itself might not be a cause of other potential cancers, such as leukemia.
I will enjoy the balance of winter and the upcoming spring months. In total, I have had 70 rounds of Temodar (5 days on/23 days off) since January, 2001.
Be back with an update in May 2013.
