Help us complete immunotherapy course

Update 2/21/2024

We woke up this morning to the best news in my life. My mom's CT scan results came back saying "No evidence of metastatic disease". A year ago she could not breathe, could not walk, her lung was filled with fluid. She had just weeks to go. We are now crying with tears of joy.

It's been a roller coaster year. It is still a long way to go but we know we can do it. One more year of immunotherapy. The kidney tumor is still there but it shrank to half of its size. It's not the time to take a break. Cancer does not take a break, it waits for the person to loose control. We need to stay focused and keep going forward, slowly but surely.

Thank you all for your amazing support. We would not have been where we are today without you.

Update:

The long-awaited picture that has a special meaning to me this year. The last month has been filled with our dog and cat ER visits but we finally made it. This past year has been the worst and the best in my life. From my mom's diagnosis giving her weeks to live to marking one year enjoying life against all odds.

Never submit to the society dogmas about your expiration date. There's no single magic pill that will give you health or life. Empower yourself with knowledge. It's an everyday hard work, perseverance, and love for life.

With all that, I truly wish you all Happy New Year. Let it be a better one.

Our story

“I close my eyes and see myself running… running around the lake… Grai (our dog) by my side… I am breathing in the fresh air fully and easily, I can feel the warm sun, I can feel my body… I am strong and healed. One day I will be able to do it again as I used to… go running,” my mom just shared with me yesterday.

I couldn’t speak. I realized it was the point when I needed to ask for help. For some reason, I always felt shameful asking for help. It took me a long time to have the courage to write this post but it was the moment when I realized there are times in life when we need help of others, not for ourselves but the sake of our loved ones.

Days before Christmas, in December 2022, my mom was diagnosed with cancer. Christmas holidays, festive spirits, everyone enjoying vacations and family time. I wake up in the morning thousands of miles away from her to hear the news.

There are no good cancers to get but there are some that make you feel like being swept by tsunami. Renal cell carcinoma is one of those. Asymptomatic, resistant to chemo, resistant to radio, stage IV, exceedingly rare manifesting sudden complication. In two weeks she turned from a healthy, energetic, bursting with life and full of plans person into a disabled patient that nobody wanted to deal with. Hardly being able to walk around the house and make food.

Once you hear the diagnosis, you immediately look up the information on the treatment and prognosis. The lung complication of pleural effusion with RCC stage IV with no treatment or failed treatment gives you three months. Three months. Dreaded death sentence. I was not ready to lose her. We had so many plans. I just couldn’t let this happen. I had to do something. I lost my dad to f*ing cancer nine years ago. At our home, in my arms. I wish I could see him getting older. Every person deserves to enjoy living through their old age. There wasn’t a day that I wasn’t thinking about him. It never gets easier with time, no matter what someone tells you. You learn to live with it. It changes your life forever.

When you share that you or your loved one are diagnosed with cancer, you can feel people’s reaction. You can read in their faces that you are doomed. You are just one of the unlucky ones who got it. Bad luck. Thank God they don’t have it. Better not to even think about it. Too scary. Life goes on. You are left alone navigating the illness, navigating the healing, navigating the healthcare system while trying to maintain what used to be your life.

Cancer doesn’t ask you whether it’s a good time for you, whether you have the energy, time, resources, money, support. You just scrape yourself from the ground and go. Step by step. Tine little steps. Step back, step forward. One day you win a small battle, another day you lose it. But you keep going. Because of love for life. What my dad taught me, is that as long as a person is alive, everything is possible.

I don’t blame those people at all. I was one of them. Fear. Fear of getting ill. Fear of pain. Fear of losing hope. Fear of dying. Fear of unknown. We, as society (and I don’t mean a country but our world today), find ourselves so ignorant of the disease that is number one cause of mortality. Wait, you will tell me, it’s not number one, number one is cardiovascular disease! The truth is, strokes and heart attacks are the leading direct causes of death among cancer patients. They just don’t get coded as cancer causes. It is now estimated that one in two people will develop cancer in their lifetime and will face the diagnosis. Research shows that we all get cancer cells in our body but as long as our immune system is strong enough, the cancer cells are destroyed. This process is a result of such an entangled combination of everyday factors of nutrition, stress, work conditions, and environment that are pervasive in everyone’s daily life. Yet, we prefer to believe it’s not going to affect us. Someone else, not us.

To comfort you, some might add that we will all die at some point, and it’s normal, so take it as it is, there is nothing you can do. Well, dying from cancer is not normal, it is not natural. A cancerous cell is against the nature. There is a natural cell process called apoptosis, cell death. Every normal cell is programmed by nature to go through apoptosis, to die. A cancerous cell is programmed to live and divide forever. To parasitize a body. And, in fact, it is quite disturbing to hear such normalcy perspective. It gives an easy way out for a person, an opportunity to put responsibility for their life onto others’ (doctors’) shoulders.

As my mom and I began this journey of learning and healing a year ago, we were overwhelmed with all the information available these days. I feel more empowered now than I was nine years ago when I lost my dad. We know we CAN do it. We know WHAT to do.

It has not been easy. It does feel like a rollercoaster because there is no copy and paste protocol that will fit any cancer, any person. As a complex combination of factors and characteristics, it requires a complex thinking and approach, changing and adapting to the individual. Now we have the knowledge, the skills, the access to information and treatments. We have to act on our behalf. No doctor, clinic or drug will ever give you health. They can give you treatment, to the best of their knowledge. With novel promising immunotherapy treatments, RCC success rate is 15-20%. While it’s a hope for patients, it turns out more as a surprise for doctors if they see a good response. With rare cases of pleural effusion they don’t even talk about response rates. Even my mom’s oncologist went from kindly joking “You control your mom. She controls her blood pressure. I control her cancer. Everyone’s happy,” to “Keep doing whatever you are doing because it’s working.” And they begin to look at you like a walking miracle.

The more I hear about so many people giving up early, the more I admire my mom’s stamina, resilience and will. When someone asks why I am so stubborn, I tell them I got it from my mom. When she found out about her diagnosis, she went into such a shock she couldn’t think, she couldn’t act. She felt paralyzed. With her physical and emotional condition at that time, she traveled thousands of miles away from home to get her treatment. She had the courage to get out of her comfort zone and navigate a new healthcare system in a new country in a language she barely understands but so eager to learn. She put her trust in me. That we can overcome everything together. I can’t let her down now that we’ve made it this far with such breathtaking results. She is feeling good. She is determined more than ever. We made it from walking 60 feet to 3 miles every day! We made it to the lake! Every day, every step we are getting closer to our goal. Against all odds.

I love a quote by Isabel Allende, a Chilean writer, “Retirement in Spanish is jubilacion. Jubilation. Celebration. We have paid our dues. We have contributed to society. Now it’s our time, and it’s a great time. I have chosen to stay passionate, engaged with an open heart. I am working on it every day. Want to join me?”

Humbled and deeply grateful, I am asking for support that will help my mom continue her treatment and move her into complete remission. She wants to live, enjoy simple life, keep learning and helping others. As a doctor, working days and nights in ICU, she saved so many lives. She deserves at least one chance to save hers.

If you can, please share to help us spread the word. Thank you.

Update:

I wanted to give a more detailed overview of the current treatment that my mom is getting. I hope it will also be useful for those of you who might be going through this experience, for yourselves, your loved ones, or your friends. Just remember that you are not alone and there are ways out there to help you. Please don’t hesitate to contact me if you ever need any information or guidance on where to look for information.

As there are no cancers and individuals that are alike, each and every case requires a thorough and thoughtful approach. Since the disease is a combination of multiple factors (and genetics is just a tiny percentage of that that can actually be manipulated as genes can be turned on and off), we have to take a massive and radical approach and stick to it every day, every minute. Cancer doesn’t take a day off. We can’t expect a single drug to work. We may be able to see a short-term result but the lasting effect depends on so many things. Same goes for any food choice, supplements, and off-label repurposed drugs. We can’t rely on just one single thing to work. It has to be a combination used for right reasons at the right time under medical control.

We decided to pursue a combination of conventional and holistic treatments. When facing this aggressive type of cancer, we can’t rely on just one modality and go either only conventional or only natural. We have to utilize as much as possible of everything that exists out there. We have to try to tap into every type of treatment approach, etiological, pathogenic, and symptomatic.

At the moment she is on first-line therapy for RCC IV which is a combination of an oral target drug and an immunotherapy drug. She is getting immunotherapy infusions every three weeks. We believe immunotherapy is what makes a huge difference for patients like her with cancers that are known to be resistant to chemo and radiation. I know people who had great long-term success with this treatment and others who were not able to tolerate it or did not have any response. Since she did not have any major lifestyle or genetic factors that are known to contribute to development of RCC, we believe stress and weakened immune system may have played a substantial role. We are grateful that these drugs exist now (they were not approved yet when my dad was ill). Immune therapy drugs “activate” lymphocytes to attack cancer cells but they do not increase the number of lymphocytes. We are working on that with other means and hope to continue seeing a good progress. With ups and downs, she is tolerating the treatment well and we are trying to keep the side effects under control.

In addition to this conventional treatment, we are doing lots of supplements rotations, vitamins, diet, off-label repurposed drugs, juicing, exercise and stress management. We hope to be able to try IV Vit C as she has tried liposomal oral form before with good results. Not every vitamin or supplement is appropriate with RCC or in her case. We have been doing a massive research of medical literature (using databases such as PubMed) on every single element, supplement and food item before incorporating that into our protocol to make sure it is safe for her, it works for RCC and there are no interactions with other drugs or supplements she is on, to make sure it works synergistically. We can’t rely on any single holistic doctor or clinic. We have to do it on our own and be advocates for ourselves because cancer field is so diverse and medical knowledge is ever-changing, so no single person can stay up-to-date on all of the cancer types and current research findings. Our medical knowledge and experience helps us understands the studies and mechanisms behind the drugs’ and supplements’ actions. We check her blood work every three weeks to monitor the progress and make adjustments when needed.

Thank you for all your support. I will keep you updated on our treatments and progress.