Diagnosis: Oligodendroglioma, multi focal, Grade 2 ,3
Still in the game ! 19.5 YEARS as of March 2017
Now heading towards my 85th round of temozolomide today ! ! .
Anniversary 19 reunited me with my companion, TEMODAR !
My July, 2016 MRI confirmed substantial growth over the past 6 months, so its treatment time. I was offered the option of PVC or temodar; I returned to my old buddy, Temodar, because of the stories I have read regarding less toxicity.
May and July 2015, Depressing news? YES.
Do I count the years, the months, the weeks???? YES.
Melancholy? YES, at times, recognizing that my remaining life span will be in years, not decades.
Prone to bouts of crying? YES.
OPTIMISTIC? NOT SURE. There are few long term survivors with this type of multifocal oligo which means there is no priority for clinical trials.
A CURE? NO. Convention medicine has no cure for my disease, now or in the foreseeable future. The best we can look forward to is treatments that contain the growth and perhaps provide some shrinkage.
A strong sense of self and a strong will to survive. An acceptance of the treatments needed to handle the disease, an acceptance that this is no cure for my disease based on current medicine. A willingness to travel thousands of miles each year to be treated by medical professionals whom I trust and feel confident in their care.
Looking into clinical trials, but have not located any for my disease and prior treatment protocols. The side effects of the chemo are more significant than in the prior years: longer periods of constipation, restlessness, acute fatigue, sleeplessness when avoiding the lorazepam. After three days on the pills, it feels as if a blow torch is fired into my mouthâ€¦a feeling that lasts for a week.
I resumed Temodar in August, 2016, at 320 mg 5/28, as there was significant growth over the last 6 months. Back to the monthly blood test before starting each cycle of Temodar and the blood test before each MRI. My physician and I considered the option of PVC as a chemo alternative, but after deliberation on the harsh side effects, I opted to continue with the temodar. I also found it important to switch to a different brand generic, as the one from the major US manufacturer was causing excessive nausea. I am pleased with the current generic. Likewise, the general anti-nausea pills have controlled most of the nausea, although on days 4 and 5 of treatment, and days 6 and 7, I still find my stomach sour and UGLY!!
In February 2017, my MRI summed it up as follows:
"Mass of the medial left mid to posterior frontal lobe and corpus callosum splenium measuring up to 7.5 cm maximum diameter is again identified without significant change. Right brachium pontis nonenhancing 1.6 cm lesion
IMPRESSION: Partially enhancing medial left frontal to occiptotemporal lobe mass. Right brachium pontis lesion".
My diagnosis remains mutli focal (basically that the tumor covers a large portion of the brain. When I converted the centimeters into inches, I was astonished at the large size of the largest tumor area (3 inches by 1.3 inches by 1 inch). Not many parts of my brain remain tumor free.
I continue treatment at JFK Medical Center, Edison, NJ, where I was initially diagnosed in August 1997. I have been extremely fortunately to have had only two neuro-oncologists attending me all these years at JFK (Dr. Hariharan initially and currently Dr. Joseph Landolphi). And extremely important in my treatment has been my energetic and caring neuro onc nurse, Patty Anthony. Patty was my attending nurse at my initial biopsy on Aug 13, 1997, and she and I are both still at our stations at JFK.
While the temozolomide is my life saver, when you put poison into your mouth 5 nights each month, there is a sense of uneasiness and fear. The warning on the label reads in part:
"If temozolomide capsules are accidentally opened or damaged, be careful not to breathe in (inhale) the powder from the capsules or get the powder on your skin or mucus membranes (for example, in your nose or mouth). If contact with any of these areas happens, flush the area with water".
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 anticipated that only 22,910 people would 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.
BACK TO THE BEGINNING: AUGUST 13, 1997 : Biopsy
Learning I had a brain tumor
I was experiencing low neck pain for 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. This initial scan revealed I had a Chiari Malformation. A full brain scan was done a few days later in July, 1997. The technician brought the films out to the waiting room and he routinely said, "Oh, you have MS or brain tumors". He handed me 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 thinking "Hope it's brain tumors and not Multiple Sclerosis (MS)." 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, 18 years later, I am still thankful that the diagnosis was not MS. In 1989, I was 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, I was seen by several doctors and ultimately referred to the NJ Neuroscience Center at JFK Medical Center, Edison, NJ. With the exception of a PET scan done at Sloan Memorial in New York City in late 1997, all treatments have been 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 part of the treatment protocol.
- 1997 Oct 11 First seizure. Hospitalized four days. 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. The group remains an outstanding resource: guest speakers, survivors, doctors, family and 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's impact on memory, learning, emotions, vision, hearing, taste,perception, 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 had 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. There was only beginning to get a lot of information on the internet. In the first years of my journey, I relied on University libraries in New Jersey.
- 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 pills daily followed by 23 days of no pills. Dosage was 250 mg pill. Initial course of treatment planned for 12 months. Blood tests monthly.
- 2001 Hospitalized. Temodar and I had differences to iron out, such as the best time of the day to administer (morning 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 plagued me. Tried every constipation remedy know to humankind; 99% failed. MRIs every two months. Blood tests monthly. I overcame my lifelong fainting at the sight of needles.
- 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 CEREBRALÂ¦".
- Jan 2002 Temodar continues 5/28 and I have MRIs every three months. Switched to Keppra as the antiseizure medication.
- Jan 2003 Temodar continues, cycle 13. What happened to that 12 month plan ?
- In the summer of 2003, my fiancÃ©e dies suddenly; I had the good fortune of meeting another man, Ed, who would become my husband in a few years. He developed tonsillar cancer in early 2009, so we both understood the stresses cancer places on a family. He underwent extensive robotic surgery at HUP in Philadelphia, PA, followed by 30 rounds of radiation. He reached the 5 year CURE STANDARDâ€¦.and we were both delighted. We were happily married in February 2009. OUR LIVES HAVE BEEN BLESSED.
- Jan 2004 Temodar continues. Will it never end? Now into the 3rd year of treatment. MRIs every few months, constant blood tests to assess the impact on the blood from the Temodar and the impact of the dye used in the MRI contract process.
- Jan 2005 Temodar will be stopped. Blood is showing impact of the long term use. 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:" â€¦ a further progression with some faint enhancement" Options: Gamma knife, chemo options. Continue reducing Keppra. Resumed Temodar 5/28 cycle at 250 mg. There are 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." Yes, we had our discussions, but no alternatives were presented that I can recall. So, we stay the course with Temodar.
- 2012 Feb Round 14 of the Temodar. Keppra in now completely eliminated
- 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. STABLE TUMOR BURDEN. NO NEW ENHANCING LESIONS SEEN.
OVERALL, I have fortunately tolerated the chemotherapy well; have missed little time from my career. My family, clients, co-workers have been very supportive. I was a self-employed Certified Financial Planner, Chartered Financial Consultant, Chartered Life Underwriter, and many other professional designations. I was dependent for income on my ability to drive to see clients; my co-workers and friends filled in as my drivers, to and from the main office, and from clients. These folks made it possible for me to have the funds to pay the $1300.00 monthly co-payments for my chemo. PS I forgot to mention that I had a tax practice at the time with over 400 clients.
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 in 2012 was $30,000). But, I can look back over this journey, and my motto remains:
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 May, 2013. The results of the Jan 2013 MRI indicate that the tumors are no worse. As long term use of the drug is being linked to some cases of leukemia, I believe the doctor and I are in agreement that, if the disease can remain stable 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. 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.
Things are going extremely well. My MRIs in Jan and May 2013 showed some minor enhancements in a few areas, but there is no recommendation to resume treatment. It has been a wondrous 7 months: No chemo. This month marks the 16th year since my diagnosis of multi-focal oligos. When the initial diagnosis was presented to me, my primary research resources were the university medical libraries and a support group. Over the years, the expansion of medical information on the internet, as well as the support groups online and at the local community setting, has made it possible for the newbies to be more informed about the disease. And, as long-term survivors post their experiences, I believe it is consoling to the more recently diagnosed that long term survival, with QUALITY OF LIFE, is more commonplace. My next round of MRI and blood work is scheduled for mid-September, 2013. Until then, I enjoy each day: living with a ZEST for LIFE.
All things continue going well in my life, including the oligos. The MRI done Jan 29 shows tumors in right frontal lobe, and the left parietal and occipital lobes.
Fortunately, I am symptom free and have been for well over two years. My last round of temodar was in December, 2012 (following a 24-month course of oral treatment). My doctor, and I, are pleased that there are no new enhancements in the tumor areas and there have been no symptoms.
Living life and enjoying each moment. In December, did Vegas with the National Rodeo finals one evening, the Million Dollar Quarter life show at Harrah's another night, and had plenty to eat at the famous Bacchanal buffet at Caesars Palace. Returned to Florida and set off on cruising the Caribbean for 9 days aboard the Ruby Princess. Food, fine weather, and a respite from the cold that was gripping the Northeast, and continues.
Very happy to be again providing an update that is positive! Now 16.5 years and counting!!
The last two years have been excellent; no treatments and no chemo. The only interruptions in the year have been my quarterly MRI scans and visits with Dr.Landolfi.
Overall, it seems that there are less folks posting on the chat boards, which may indicate that either we have had some great survival and success stories, or the direct opposite is true.
I have enjoyed this year with trips to the Caribbean for a cruise, and road trips to the Southwest including Las Vegas, Tucson, Tombstone and Hatch, NM.
Months have passed and I report continued good health. My MRI report last week (Jan 8, 2015), indicates the tumors are stable. No new enhancements. I continue to enjoy life, now taking greater care of the food I partake in and attempting to get into a more regimented exercise program. I have lost about 4 pounds over the past 5 months due to the exercise and the anticipation of a cruise that unfortunately did not occur because my mother-in-law took a stroke on Nov 19.
UPDATE: March 26 2017
I returned to TMZâ€¦.in 2015 for another 6 rounds, concluding in Dec 2015. I was getting more tired and had poor blood results, so in consult with my doctor, discontinued the chemo in Jan 2016 as the tumors were stabilized. In early 2016, I sought second opinions at U of Penn. I was hoping that I would be a laser ablation candidate, as a friend of mine had successful removal of her oligo. However, because of the multi focal nature and the large amount of involvement of brain tissue, I was not a candidate for any surgery at this time. I was referred to an oncologist at HUP, with whom I consulted several months later. Her only option was PVC. I decided to take a wait and see approach and continued with my neuro onc at JFK. Growth was noted on the MRIs in May and July.
The short reprieve from chemo was a blessing, but not long lasting. In May, my NO noticed the increase in the tumors and had me return for more MRIs in July 2007. Based on the findings, I again had to choose medical intervention. I selected TMZ again, as I had been okay with the drug in the past. The dosage was increased to 320 mg. For 5 days every 28.
I resumed Temodar in Aug 2016, at 320 mg 5/28, as there was significant growth over the last 6 months. Back to the monthly blood test before starting each cycle of Temodar and the blood test before each MRI. My physician and I considered the option of PVC as a chemo alternative, but after deliberation on the harsh side effects, I opted to continue with the temodar. I also found it important to switch to a different brand generic, as the one from the major US manufacturer was causing excessive nausea. I am pleased with the current generic. Likewise, the general anti-nausea pills have controlled most of the nausea, although on days 4 and 5 of treatment, and days 6 and 7, I still find my stomach sour and UGLY ! !
And so here I am, in late March 2017 preparing for my 85th round of TMZ. I would think I must hold a world record for this drug. Perhaps I should be the poster child for TMZ.
I am thankful to be able to post this update. I am thankful to have had my Dr. Harry and then Dr. Joe L. and my nurse, Patty A., at JFK Medical center. I am thankful for the Central NJ brain tumor support group and to Al Musella's website. And I am thankful to my husband, Ed, who has to deal with my illness and its side effects. I am not the person I was 19 years ago, nor the person I was when we met in 2003. Our significant others are impacted also by the changes the brain tumors made in our lives.
November, 2017. Time to make new decisions. My NJ doctor recommended radiation and then lomustin. I decided to seek a second opinion at the MD Anderson facility in Albuquerque, NM. Their opinion was radiation and chemo. However, I was not comfortable with these options from either NJ or NM institution and elected to go to the # 1 cancer center in the world: MD ANDERSON IN HOUSTON TEXAS. This was a major expense and challenge but, when you are fighting for your life, you will do anything.
Drove with my husband to MD Anderson and meet with the best medical staff ever, and I have seen many over the last 69 years. At MD Anderson on November 16 and within a few days they had MRIs, blood and other tests and arranged for a brain biopsy even with the Thanksgiving holiday approaching. The staff at MD are absolutely amazing and the nicest, kindest folks in the world.
The brain biopsy was done and revealed that the oligo IIs were now reclassified as Anaplastic Oligo III, in multiple locations in the brain, right and left. Much more aggressive than expected. It was good that I came to MD Anderson as no recommendation was made in NJ to do another biopsy (only other one was done Aug 1997 at the time of initial diagnosis.
My neuro-oncologist recommended IRMT radiation immediately, so we went home for a few days and then drove back for a 6 week radiation course. Finished the radiation February 7, 2018. Stayed in Houston TX at an extended stay facility at Herman Circle. It was a great place, had all the best of a small condo. Only surprise was the 19 degree weather we had for two days in Houston, so cold that the hospital closed at 1 PM one day and were able to reschedule my radiation to Saturday. Now that is a real hospital at work: patient centered.
Throughout the radiation, I felt fine but I have only been sleeping a couple of hours at a time and then get up to pee. Had no pain throughout the experience, and not fatigued as I was told to expect. I guess I wanted to be living in the moment and would not give in to anything. Again, the radiation went smoothly; the staff in the radiation section were absolutely wonderful and caring. Nowhere in all my years of medical treatment have I found a more warm and loving staff. Even the parking attendants were wonderful folks.
How am I feeling ?
I feel that my choice was well made. I am confident that MD Anderson offers me the best possible outcome. Their motto is MAKING CANCER HISTORYâ€¦.with a crossout mark thru CANCER.
My journey will continue in March when I return to MD Anderson for reevaluation on the impact of the radiation on the tumors. I am already scheduled for blood, MRI and the doctor (amazingly all in one day). The doctor had mentioned a chemotherapy regiment, but the drug and duration has yet to be identified. I WILL SURVIVE. This was my motto every day of these last 3 monthsâ€¦.and will continue to be my motto as I move forward with the support of my husband, Ed, my family and friends.