"First do no harm" is the foundation of the Hippocratic oath. It is no doubt what springs to mind when my medical professionals see me coming armed with the latest research and endless questions on drugs and treatments outside of conventional ovarian cancer regimes.
To back-track, I completed 7 rounds of topotecan at the end of the first week of April. The first six rounds were the best chemo experiences I've had to date...no side effects to mention and a life! The 7th round was the straw that broke the camel's back . The dosage was increased throughout the period and the last infusion seemingly saved up all that was possible. The result was toxic. I've been asked by two doctors and several nurses to explain what happened and the best I could come up with was "like being in a black hole with no ability mentally or physically to surface". A friend described a similar circumstance as the feeling of having her soul leave her body and being left with the shell. So, this was not a near-death experience with all the welcoming lights and tunnels - just a death experience. Perhaps hell.
This description, coupled with the word toxic, caused my oncologist to take me off chemo for the time being in order to give my body a chance to rebuild and recover.
The mind is so fickle however, it has no ability to remember actual discomfort or pain - only the knowledge that it happened. So, not being daunted by a mere black hole, I am now pursuing other treatments that could be helpful during this break. Two drugs come to mind - metformin and tamoxifen.
Metformin is a drug which is typically used in the treatment and regulation of type II diabetes. Several papers have been published recently about it's potential use in ovarian cancer progression, survival and chemosensitivity. An article in the Journal of Diabetes - published in February 2011 by Donghui Li, states that "...there is increasing evidence from epidemiological investigations, laboratory studies and translational research that metformin may have a broad activity against cancer." Armed with this and several more recent papers, I prevailed upon my medical oncologist, my general practitioner and my brother-in-law (who is a neuphrologist) to see if it isn't worth trying. The theory is that glucose - which is what the body produces as fuel to live - is also the primary fuel of cancer. If that fuel can be limited and modified the cancer cells will starve or eat each other. Metformin has been recommended for use alone or in combination with cisplatin http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084625/ by the Mayo Clinic. The possible side effects include weight loss and diarrhoea. The three-way verdict is that there is no compelling reason NOT to use metformin.
Secondly, even though my tumour assays have shown that I am not BRCA1 or 2 positive nor HER positive, there is a body of evidence that shows that the hormone suppressing drug tamoxifen can be effective as a maintenance drug in between chemo cycles. The female body continues to produce estrogen even after a total hysterectomy, in the liver, adrenal glands, breasts and fat cells. The possible side effects of tamoxifen include hot flashes, muscle pain and constipation - to name a few. Again, the doctors have agreed to the "no reason why not" theory.
My GP told me an interesting story about how the medical world was ultimately able to respond to HIV/AIDS - turning it into a very treatable, maintainable disease - she said that "they threw everything at it - not just one drug at a time". I too see no reason "why not" - I'm going for it.
25 Apr 2012
15 Apr 2012
"This is a marathon, not a race"
These words were spoken to me in reply to a barrage of questions I posed during my very first visit with my new medical oncologist in May 2009. I had been referred to him by my surgeon after a 17 month remission, as it was clear that I was in the throws of my first recurrence and would need a chemo specialist. The words were pointedly meant for me to rearrange my attitude and to leave him to figure out the medicine.
Those words are echoing in my head these days. A marathon - 42.195 kilometres or 26.22 miles or in my case, four years, 7 months and 3 days.
In the OvCa marathon, staying in the game is no different than training for Boston. Once you're through surgery, it's about nutrition, mindset, chemo endurance and plenty of physical and psychological coaching. We both become imbalanced, exhausted and hit the wall. We both feel the agony of defeat - if not from CA125 psychosis - then from the "elites*" whose name underlines the fact that you didn't stand a chance to win to begin with. And it wasn't about winning anyway.
I'm extremely proud to say that my brother-in-law - our webmaster's husband, John - will be wearing bib number 13147 in Monday's 2012 Boston Marathon. John has been on a journey culminating in this event for years. Other than the day he married my beloved sister, it is probably one of the highlights of his life. The barriers to entry were high - not having been a life-long runner - but having enough drive, motivation and focus - to put it on his "over 50" bucket list. I wish John's father had lived to see this day - maybe he'll be there at the finish line. His mother won't ask how it went - she who couldn't think of a second name for her second son.
Well, we care lots. We, who upon discovering that he didn't have a second name, christened him John Elton - after his favourite singer/performer - we care that he runs his heart out - that he feels the rush of the hundreds of thousands of spectators cheering him on - that amongst that throng of voices he'll hear ours sending him wings under his feet - that he feels the thrill of achievement and sweet victory when he finally crosses the finish line.
It's interesting to reflect on the the doctor's cliche manifesting itself in real time in our family. Life is a beautiful metaphor.
GO JOHN ELTON GO!!!
*elites = world class, high performance, highest speed/lowest time runners
Those words are echoing in my head these days. A marathon - 42.195 kilometres or 26.22 miles or in my case, four years, 7 months and 3 days.
In the OvCa marathon, staying in the game is no different than training for Boston. Once you're through surgery, it's about nutrition, mindset, chemo endurance and plenty of physical and psychological coaching. We both become imbalanced, exhausted and hit the wall. We both feel the agony of defeat - if not from CA125 psychosis - then from the "elites*" whose name underlines the fact that you didn't stand a chance to win to begin with. And it wasn't about winning anyway.
I'm extremely proud to say that my brother-in-law - our webmaster's husband, John - will be wearing bib number 13147 in Monday's 2012 Boston Marathon. John has been on a journey culminating in this event for years. Other than the day he married my beloved sister, it is probably one of the highlights of his life. The barriers to entry were high - not having been a life-long runner - but having enough drive, motivation and focus - to put it on his "over 50" bucket list. I wish John's father had lived to see this day - maybe he'll be there at the finish line. His mother won't ask how it went - she who couldn't think of a second name for her second son.
Well, we care lots. We, who upon discovering that he didn't have a second name, christened him John Elton - after his favourite singer/performer - we care that he runs his heart out - that he feels the rush of the hundreds of thousands of spectators cheering him on - that amongst that throng of voices he'll hear ours sending him wings under his feet - that he feels the thrill of achievement and sweet victory when he finally crosses the finish line.
It's interesting to reflect on the the doctor's cliche manifesting itself in real time in our family. Life is a beautiful metaphor.
GO JOHN ELTON GO!!!
*elites = world class, high performance, highest speed/lowest time runners
4 Apr 2012
Cutting Edge
The Inspire.com discussion groups are abuzz with an emerging treatment for difficult-to-reach ovarian cancer tumours called CyberKnife. Contrary to what its name conjures up, it is a robotic radiosurgery system - a non-invasive alternative to conventional surgery. It delivers pinpoint beams of high-dose radiation to tumours with remarkable accuracy. It purports to offer a pain-free option to patients with inoperable or surgically complex tumours with quick recovery time. All of this seems to indicate a better quality of treatment and perhaps lower cost overall.
Many ovarian cancer patients have their disease recur in lymph nodes which are often buried in the abdominal cavity. Disturbing the bowel system to remove lymph nodes by conventional means is rarely done after initial surgery. The usual secondary treatment involves serial chemotherapy.
This alternative offers new hope with no invasion. Removing the source of the cancer - i.e. active nodes - offers potential remission without chemo. Another favourite recurrence site is the liver - the Cyberknife.com site states that "these treatments are usually performed on an outpatient basis in one to five days. Most patients experience minimal to no side effects...". Wow.
This treatment could also be appropriate for patients whose health would not permit conventional surgery - no anaesthesia is involved and it eliminates the risk of hemorrhage and infection. It could also be an option for patients who refuse surgery. Of course, this technique is not a panacea for deeply embedded or inaccessible tumours.
CyberKnife has been around for years but is only recently being offered more aggressively to ovarian cancer patients.
A similar but different technique is called Gamma Knife - http://www.gamma-knife-surgery.com/. According to their website, this treatment is recommended for brain lesions which do exist in ovarian cancer patient metastases, however, rarely.
Recent news has also covered successes of cryoblation - a technique of freezing cancerous tumours through injection. This procedure has migrated from other types of cancer treatment such as prostate cancer. It is now being offered as an alternative and/or adjunctive treatment to chemotherapy for recurrent OvCa in accessible tumours.
A great number of mainline chemotherapies for ovarian cancer originated after successes with the more prevalent cancers. It's interesting to note that non-invasive treatment techniques are heading in the same direction.
Many ovarian cancer patients have their disease recur in lymph nodes which are often buried in the abdominal cavity. Disturbing the bowel system to remove lymph nodes by conventional means is rarely done after initial surgery. The usual secondary treatment involves serial chemotherapy.
This alternative offers new hope with no invasion. Removing the source of the cancer - i.e. active nodes - offers potential remission without chemo. Another favourite recurrence site is the liver - the Cyberknife.com site states that "these treatments are usually performed on an outpatient basis in one to five days. Most patients experience minimal to no side effects...". Wow.
This treatment could also be appropriate for patients whose health would not permit conventional surgery - no anaesthesia is involved and it eliminates the risk of hemorrhage and infection. It could also be an option for patients who refuse surgery. Of course, this technique is not a panacea for deeply embedded or inaccessible tumours.
CyberKnife has been around for years but is only recently being offered more aggressively to ovarian cancer patients.
A similar but different technique is called Gamma Knife - http://www.gamma-knife-surgery.com/. According to their website, this treatment is recommended for brain lesions which do exist in ovarian cancer patient metastases, however, rarely.
Recent news has also covered successes of cryoblation - a technique of freezing cancerous tumours through injection. This procedure has migrated from other types of cancer treatment such as prostate cancer. It is now being offered as an alternative and/or adjunctive treatment to chemotherapy for recurrent OvCa in accessible tumours.
A great number of mainline chemotherapies for ovarian cancer originated after successes with the more prevalent cancers. It's interesting to note that non-invasive treatment techniques are heading in the same direction.
2 Apr 2012
"Light It Up Blue" for Autism Awareness
Autism is symbolised by a puzzle piece - very appropriate for a condition - or more accurately - a spectrum of conditions which have no known cause and no cure. Furthermore, autism is considered an epidemic in the United States as it has increased tenfold in the last forty years. Now, one in 88 children is affected somewhere on the spectrum of the disorder from high-functioning to non-verbal with severe physical complications. Strangely it effects 1 in 54 boys and 1 in 252 girls. The prevalence among boys remains a mystery.
I read an article in the NY Times on the weekend which said that autism can now be diagnosed in infants as early as 6 months old with a CT scan. The changes in the brain have been studied and are now identifiable. Early detection is obviously a help in providing parents and caregivers with the knowledge and tools to cope. Autism isn't a sentence - there are many, many things that can be done to help children learn and function well into adulthood.
Extreme controversy remains about the role of certain childhood vaccinations in triggering autism.
A high-functioning PhD with Asperger Syndrome (another developmental disorder on the spectrum) claims that autism - no matter where you are on the spectrum - is not a disease, just different.
For more information on the subject, here are some great web links:
- http://www.autismspeaks.org/
- http://www.barberinstitute.org/autismINsight/autismAwareness.php
- http://www.cnaf.net/
- http://www.autismsocietycanada.ca/index.php?option=com_content&view=article&id=68&Itemid=138&lang=en
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