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March 12, 2015 From Sofia, Portugal
About my diagnosis and treatment (including chemo, radiotherapy, radiosurgery and immunotherapy):
In December 2011, I was diagnosed with stage 1A small cell ovarian cancer hypercalcemic type and lost my two ovaries despite just one was sick... I didn't do chemo after. The hospital was careless with me and only when I decided to go to another place 9 months after, I found was sick again: 2 new tumors- one near the primary area and another on retroperitoneum. They were very hard to operate on that time because the big one was stuck on the vena cava and arteria aorta. So, in November 2012 I started chemo: cisplatin + etoposide and checked after 3 months and the tumors were shrunk by 50% so they could be operable...I decided to do another chemo cycle before surgery because I chose to get my surgery at MD Anderson, Madrid (Spain, so not my country).
I was operated on 14th February 2013- everything went fine, I was clean after. Then I did 3 more cycles of cisplatin+ taxol and after that, received lombo-aortic + pelvic radiotherapy (25 cycles, 2 gy each one). All the treatment ended on 27th July and had surveillance plan every 3 months with PET-CT.
During one of my PET-CT, in April 2014, I found once again another tumor, apparently stuck on my spleen (approx. 4 cm with SUV= 7). After some discussion, 2 options were given to me: a) operation (cut all my abdomen again!); b) radiosurgery… the b) hypothesis was only defended by my radiotherapist …The radiosurgery in my case meant receiving a high dose of radio, in single shot…less than 10 minutes to irradiate just the tumor, protecting the rest of my body as much as possible, with 20 gy. This approach is more conservative than a surgery and this would be the huge advantage for the body…less harm and apparently there was just one tumor. You can read and see the video about this new technique on here:
I decided for radiosurgery, but on my planning CAT to do this procedure they found another tiny suspicious thing, also near the spleen…but on previous week on PET this thing didn’t light up…so could be a tumor or not.
A month after my radiosurgery I went to Germany to try immunotherapy vaccines (dendritic cells vaccines + the oncolytic virus Newcastle Disease Virus) which I'm currently doing...I currently have done 6 vaccines, the first 4 vaccines were done with 4 to 6 weeks between, and then I started to do every 3 months. Then will be every 6 months until one per year and none, depending how good or bad I am. There is no right number of vaccines to do, is not predictable since immunotherapy like I’m doing is not something fast, but something that is “introduced” to your immune system and for that reason needs time until your body learns…not like conventional medicine which is a response from outside to inside. This one, starts in the inside of our body due to our blood which is worked on in a lab and re-injected to us.
Just the first cycle of immunotherapy treatment gave me side effects – fever, cold symptoms- they are related to our healing activation response against the virus injection.
So I don't know why, but probably because of those vaccines, that tiny suspicious thing also found in April 2014 took 6 months to grow 1 cm...Usually my tumors grow one cm per month. I received another radiosurgery, this time on this tiny tumor, in October 2014...I checked in January and this tumor went away, too.
I can’t tell you with all the certainty in the world that immunotherapy is doing something for me but since last year is the unique systemic treatment I’m receiving…It is almost a year since I had that big recurrence on my spleen. Since April, 2014 my CATs and PETs always found suspicious things and apparently only the “tiny” one increased, the other things always gone then, even one which light up with a SUV=5.8 on a PET. Of course the key to eliminate the tumors found in April quickly, was the radiosurgery, but to keep the rest of the body healthy maybe is immunotherapy, maybe is God, I just don’t know, but I have some faith in both!
Brief explanation of basics about immunotherapy:
Normal cells have intrinsic tumor suppression properties but due to multiple mutations of the tumor suppression genes and/or of oncogenes may lead to a failure of the intrinsic tumor suppression mechanisms. Mutations may occur by oncogenic stimuli such as: chronic sunburns, radioactive radiations, certain chemical compounds, cigarette smoke, toxic micro-environment of chronic inflammation, oncogenic viruses etc and this leads to the development of tumor cells.
Our immune system has also extrinsic tumor mechanisms which occur when the intrinsic ones fail and immunotherapy works to trigger those extrinsic tumor mechanisms. There are several trials and forms of immunotherapy around the world. In Germany, the clinic for immunotherapy (http://www.immune-therapy.net/en/) uses autologous primed dendritic cells (DC), with or without an oncolytic virus (New Castle Disease Virus- NDV). To specifically attack the tumor and leave the normal tissue alone, they marked the tumor by administering NDV to the patient. It is expected that cytokine production neutralizes the virus immediately and that cancer cells are lacking in this type of cytokines and that a certain proportion of them will be killed by the virus. The remaining cancer cells survive the attack, but are infected by the virus and presented the NDV’s antigen on the surface. Then, the autologous monocytes of the patient which were transformed, using appropriate stimuli, to dendritic cells in cultures in lab and also were presented to NDV antigen and tumor antigens (once they are available, for example, with tumor sample). When the DC are mature, they are injected back to the patient.
JOIN THE FIGHT AGAINST SMALL CELL OVARIAN CANCER