What is remission?
Complete remission means that tests, physical exams, and scans show that all signs of cancer are gone. Some doctors also refer to complete remission as “no evidence of disease.” That doesn’t mean you are cured. There is no way for doctors to know that all of the cancer cells in my body are gone, which is why many doctors don’t use the word “cured.” If cancer cells do come back, it usually happens within the 5 years following the first diagnosis and treatment. Some cancer cells can remain unnoticed in the body for years after treatment. If a cancer returns after it has been in remission, it’s called a “recurrence.” It’s normal to be concerned that this will happen to me since I had recurrence in June 2016 after treatment ended March 2016. Every situation is different, and there’s no way to predict what will happen to me or to someone else with the similar disease.
What does all this mean for me?
As of September 12, 2016 I have been in complete remission. This does not mean treatment stops. It means simply no cancer cells found in my body per the PET scan. Since then I have undergone 3 additional treatments every 21 days. My last treatment was on November 3, 2016.
The month of November was very busy. First, I consulted with my treating oncologist, Dr. Maen Hussein http://flcancer.com/hussein, and lead oncologist, Dr. Garry Schwartz http://www.cumc.columbia.edu/hematology-oncology/about_us/gary_schwartz, on the next steps. They both agreed I should consider the maintenance chemo which is basically spreading out the treatments from 21 days to every 6 weeks. The same dosages, but less frequent. December 12-16 is my next treatment on this new 6 week plan.
At first I wanted to stop all treatments, however, I was advised otherwise since apparently this cancer type have the tendency to return and when it does, it is usually very aggressive. With that said, I agreed to undergo 4 treatments, 6 weeks apart ending April 2017. At the end of this period, we will regroup to figure the next steps.
Also, I obtained a 3rd opinion from the Moffitt Cancer Center in Tampa. They have one of the oldest Sarcoma clinics around. Dr. Damon Reed https://moffitt.org/providers/damon-reed/ came highly recommended. He also agreed that the 6 weeks maintenance is the way to go for now. He has agreed to manage my care in Tampa which is closer to my home. I feel blessed to have a great team of doctors and nurses at my side.
This may seem like a cake walk, right? Believe me, it is not. Every morning now starting around November 25th I am tracking my pulse rate, blood pressure, body temperature, oxygen level and weight. In addition, I am noting any new, constant or recurring pain especially in the areas of my lower back and left neck/shoulder. These were the areas where my initial pain began and then reoccurred back this past June. For me, this is critical for my personal peace of mind as well as my ongoing care.
I am also working out in the form of cardio, primarily dancing, and trying to harness a stress free life. This has been a balancing act and requires dedication and utmost discipline and focus. I stay away from any sweets (well I had 2 small pieces of cake this week) and try to not look at any sweets (I clearly looked at those 2 small pieces).
I am trying to increase my vitamin D level as blood test shows it is very low. I am taking 5000 IU chewable daily. This is critical as this helps boost my immune system and bone strength.
Other natural products I am taking after some research are as follow:
- Bitter Melon (Karaila) http://www.lifehack.org/articles/lifestyle/10-benefits-bitter-melon-that-makes-even-more-worth-eating.html
- Moringa leaves (Sygan) http://www.mindbodygreen.com/0-22401/10-powerful-benefits-of-drinking-moringa-every-day.html
- Black Seed Oil https://draxe.com/black-seed-oil-benefits/
These are foods that would be consumed either by cooking it or just taking it in supplement form. Other than the Black Seed Oil, I cook the other 2 or take supplements if I run out of cooked portions.
No one knows, including the leading oncologists, what course this disease may take in my case, but I know I am trying every angle of treatments, natural products and prayer to keep it in remission.
Drug Education as a bonus
For the purpose of education, I would like to share the drugs that are used to treat Ewing Sarcoma. They are a five drug regimen of vincristine, doxorubicin, cyclophosphamide, ifosfamide, and etoposide. Thus far my initial 7 treatments from October 2015-March 2016 were strictly Vincristine, Doxorubicin and Cyclophosphamide. Since then I have maxed out on the Doxorubicin. Now I have alternating treatments of Vincristine/Cyclophosphamide (1 day infusion) and Ifosfamide/Etoposide( 5 day infusion). More details on these and other drugs can be found at http://chemocare.com/.
As of the date I am posting this blog, I am enjoying the holidays and living life as normal. I only focus on the positives and try to stay upbeat and happy. When things come my way that causes worry, I deal with them quickly and move on. My support structure of family and a few close friends keeps me grounded. I am working on projects at home and continue to read and write. Life for me has always been a gift and I am treating it with utmost care.
As the year is coming to a close, I would like to thank a few people who have made this journey a pleasant one. Nina Singh, Joshua Singh, Jason Singh, Jennifer Singh, Misir Budhram, Taijwatte Budhram, Jasodra Deowdhat, Rami Deowdhat, Beta Jacob, Data Jacob, Artie and Sudesh Jacob, Nina Budhram, Tony Olive, Lakhram Boodram, Shirley Boodram, Gwen Six, Tom Six, Denise Knowles, Joseph Knowles, Esther DePedro, Bruense Aplin, Dennis Aplin, Glenda Rodriguez, James Henny, Ann and Larry Cohen, all my wonderful staff and work colleagues, all my nurses and doctors, all my care givers and finally my son, Randy Deowdhat and daughter Samantha Deowdhat for being there for me at my beck and call at home. Most importantly, God whom without His divine guidance, I would have been lost. Love you all and let’s keep praying
Until we meet again. Have a blessed Christmas and a remarkable new year. May 2017 be a blessed year for all of us.
Pictures of my Oncologists: