The Battle Against Carcinosarcoma
An interview with Sam Stern – fighter, thinker, and survivor
Sam Stern has done many things. She was an accomplished criminal prosecutor, was and continues to be a practicing Buddhist and Vipassana meditation teacher, she’s the mother to two beautiful children, aged 16 and 20, and she was a mindfulness and pain management teacher to the elderly in Northern California.
In 2011, Sam took on another role. After her diagnosis of Stage IIIC ovarian carcinosarcoma, Sam became a cancer survivor and a fighter. Told she may not make it more than one year, Sam defied expectations and now, more than five and a half years later, she’s fighting still. We sat down with Sam to talk about her journey and her unique perspective. Hers is a tale of courage, perseverance, and strength – but it’s also the story of perspective, self-awareness, and gratitude.
1. What is your primary care facility, and who is your primary oncologist? What do you like about what your doctor is doing to facilitate in your care?
Answer, Sam Stern: I live in a small town, so we don’t have a large cancer center. I go to a small cancer center close by called Grass Valley Hematology and Oncology. My oncologist for the last five and a half years is David Campbell. He’s not a specialist in any particular cancer, but he’s a really amazing person. In addition to being smart, he is open to new ideas, willing to work with any other doctors I find, and able to help me get treatments based on ideas I have researched.
2. How were you diagnosed and at what stage?
Answer, Sam Stern: I had my original surgery, my primary debulking, in May 2011 at Cedar Sinai [Los Angeles] with a renowned gyn-onc surgeon, Beth Karlan. I was surprised when they came back and said you have this really rare and aggressive form of ovarian cancer. It’s stage IIIC, it’s called carcinosarcoma, and you need to be treated with chemotherapy as soon as possible.
3. How did you go about finding the right surgeon for your original debulking surgery?
Answer, Sam Stern: There were only nine days between when I found out I may have cancer and when I had my surgery. However, in those nine days I talked to four surgeons. This is some advice I’d give people – Make sure that you find a gyn-onc surgeon (not just a general oncology surgeon) that you believe is competent and that you feel comfortable with before your first debulking – even if it means getting several consults. From what I understand, the success of your first debulking is directly related to your overall survival. Apparently, there are several places that ovarian cancer tends to hide, and gyn-onc surgeons typically know where to look and how to remove them. I think that great care should be taken in deciding who does your initial surgery.
4. What was your original treatment plan like?
Answer, Sam Stern: I started doing chemo about six weeks post surgery. I did what is called a dose-dense protocol of Carboplatin and Taxol; I got Carboplatin once every three weeks and Taxol every week. I got acupuncture twice a week, and I also worked with a Chinese medicine doctor by the name of Michael Broffman. He has a clinic in San Rafael, CA called Pine Street Clinic. He has worked exclusively with cancer patients for over three decades and is brilliant. He consults with people worldwide with respect to cancer treatments (both conventional and alternative) and will create a supplement protocol for both during and after treatment. I highly recommend him to anyone and everyone reading this. He has traveled to most of the international cancer clinics that are involved with alternative and off-label treatments, so he knows what he is talking about when he recommends them to his clients. He seems to have clients in most of the clinical trials I have asked him about. All in all, he is an invaluable resource and member of my team.
Fortunately, I went into remission post chemotherapy. Unlike some carcinosarcomas, my cancer has responded similarly in many ways to regular ovarian cancer.
After chemotherapy, I decided to try to take a very proactive approach in an attempt to keep the cancer from coming back. I began working with an integrative oncologist named Dwight McKee, an alternative medical doctor named Brian Bouch [Hill Park Medical Clinic in Sabastapol, CA], a medical researcher named Dr. Mark Renneker, a naturopathic doctor and an acupuncturist. I continued to work with the rest of my team as well.
During that time, I took several off-label drugs, such as low dose Naltrexone, Zadaxin (a non-FDA approved immune enhancer), Metformin, GCMaf, a copper chelator (a natural anti-angiogenic) and Celebrex. I took many supplements, had a pretty strict anti-cancer diet and did high dose IV vitamin C.
5. What does the Foundation of Health consist of, and how does it affect your decision-making?
Answer, Sam Stern: I focused on what Michael [Broffman] calls the Foundations of Health, such as exercise, sleep, nutrition, weight, family and community support and spiritual health. The idea is that no one treatment is worth it long term if it strongly interrupts your foundations of health. I use that idea both in deciding treatments – when, where and which treatments to do – as well as how to live my life when I am not treating.
For instance, you probably should do chemo after a debulking, even though it will disrupt your foundations. However, when I’m deciding whether to travel to Austria to get a treatment, I think of how long I’ll be away from my family, how stressful it will be, whether I will be able to exercise, what are the side effects, etc. It’s really about risk vs. reward and trying to maintain as much of your foundation as you can. There are just so many things you can try, and we are all so different.
It’s helped me to maintain focus on feeling well while fighting this cancer.
I personally find that relaxation, laughter, exercise, and spiritual practice (meditation, visualization, affirmations and prayer) are essential to my well being – both mind and body.
6. You were in remission for nearly two years but then had a recurrence. What were your next steps?
Answer, Sam Stern: I had my first recurrence in April of 2014. I decided to have a second surgery. I consulted seven or eight surgeons around the country before deciding where to have the surgery. I ended up going with a surgical oncologist who has been doing extreme surgeries on women for the last 40 years, and the guy is a total hero. His name is Dr. Robert Barone. He has an oncology practice called Oncology Associates of San Diego. It is located in Sharpe Hospital. He allowed me to speak with some of his patients before deciding. He has operated on women who were told they had no hope and who no one else would operate on. Some of them are still alive 10-15 years later. One woman told me that he stripped her entire peritoneal lining. It took more than a year for her to recover, but she was still alive 15 years later telling me the story.
7. How did you make the decision to have a second surgery, and how did you feel at the time?
Answer, Sam Stern: The thing I’ll tell you that no one really talks about is all the fear that surrounds you during this time. Your family, your friends, and your doctors, even though they’re not trying to show it, they can surround you with fear. So what I did is, I meditated every day with intention, asking for clarity and wisdom until I saw the right path. I wanted to know that another surgery was right for me, and I wanted to be aligned with the decision.
It took me several months, even though my husband wanted me to go under the knife right away; I wanted to be clear. In the end, I was clear that I wanted another surgery, and that I was willing to do something pretty extreme. I was also clear that I wanted Dr. Barone. I felt that he was the only person that would stand on his feet for as long as it took and get everything out.
8. How did the surgery go?
Answer, Sam Stern: When Dr. Barone went in, there was a lot more cancer than they thought, which is typical with ovarian cancer. He said it’s like salt and pepper, the tumors are so small sometimes. He spent 11 hours in surgery removing the cancerous implants. He also did HIPEC [Hyperthermic intraperitoneal chemotherapy], which is where they bathe the peritoneal cavity in 120 degree heated chemotherapy during surgery. They usually use Cisplatin, but he used Carboplatin because I was concerned that my neuropathy might get worse.
9. What happened next?
Answer, Sam Stern: We had fresh tumor sent by Dr. Barone to Rational Therapeutics, which is run by Dr. Robert Nagourney in Long Beach, CA. He tested that fresh tumor against several chemo and other agents to determine what the tumor was most sensitive to. This is called chemo sensitivity testing. We also had non-fresh tumor, which is kept after all surgeries in a paraffin block, sent to Foundation Medicines for genetic mutation testing. The report they generate tells you what, if any, mutations were found in your tumor. It also tells you about clinical trials targeting that mutation and which (if any) medications are out there to target those mutations. We also had the block tested by Consultative Proteomics (run by Dr. Robert Brown at University of Texas) for protein analysis. Many of the new treatments are targeting genetic mutations and proteins within cancer cells. For that reason, I think it is essential that all cancer patients get these analyses if possible.
My tumor markers started to rise several months post surgery. I didn’t want to do chemo again if I could help it. My husband, who is a retired professor and my tireless support system, was doing a ton of research on non-chemo options. We were interested in PARP inhibitors. Both my Rational Therapeutics and Foundation Medicine reports showed that my tumor should be sensitive to Lynparza, a PARP inhibitor approved for BRCA positive ovarian cancer. However, my cancer is not BRCA positive.
By a fluke, my insurance company approved the Lynparza. It worked immediately, but I could not tolerate the dose at which it worked. I had extreme fatigue. We fiddled with the dose for many months, trying to find the sweet spot between efficacy and tolerable side effects, but it never happened. I could only tolerate dosages that didn’t work. At one point, my insurance company realized they should have never approved it and tried to stop paying. However, I appealed. My doctor provided the documentation from Rational Therapeutics and Foundation Medicine and told the insurance company it would be unethical to stop paying. He pushed hard for me and succeeded in getting them to continue paying. I can’t stress how important I think it is to have people that will advocate for you – yourself, family, friends and/or doctors.
10. The PARP inhibitor didn’t work for you, so what was your next option?
Answer, Sam Stern: I still didn’t want to do chemo if I could help it. We are always looking at clinical trials, and we found one that was interesting based on the NYESO-1 protein. Interestingly, carcinosarcoma patients tend to have this protein over-expressed more often than regular ovarian cancer patients. My tumor was positive for the protein, and I entered the trial at Seattle Cancer Center Alliance [SCCA]. The vaccine consisted of a viral vector and an immune booster that tries to teach your immune system to recognize the cancer and attack it! I flew to Seattle every two weeks to get the vaccine.
Even though it did not work for me, I would encourage everyone to consider clinical trials. It is challenging for carcinosarcoma patients to get into many trials that are histology-based. We are typically ineligible because they are looking for traditional ovarian cancers and think that our histology will screw up their results. We are more likely to be able to qualify for immunotherapy trials that are based on targeted proteins and mutations. That is one of the reasons that protein and genetic mutation analysis is so important. It is also why having an oncologist that will go to bat for you is extremely important – sometimes either you or your oncologist can convince the trial investigators to allow you in, even though you have a carcinosarcoma.
11. Immunotherapy was a big part of your treatment plan. What is the advantage of immunotherapy?
Answer, Sam Stern: There has been success in treating for specific proteins in tumors. It’s a really important thing for people to know this is out there and to try it if they can get it. It can be expensive, but some drug companies have programs that give the drugs for free. From talking to my doctors, even if it doesn’t, quote, work, the immunotherapy might reconfigure your system so that if you do chemotherapy afterwards, the chemotherapy can be more effective. They do not completely understand why immunotherapy works in some situations and not others, and they don’t understand all of its benefits.
That said, I wanted to try another immunotherapy but needed to do some chemo first to lower my tumor load. I did three cycles of Carboplatin and Doxil. After three cycles, my tumor markers were pretty low, and my scans were relatively clean. Several of my consulting doctors advised me to do 6 cycles of chemotherapy. However, my plan was to take just enough chemotherapy to put me in a good position for immunotherapy, as immunotherapy works best when you do not have a large tumor load. I do not personally think it is likely that any chemotherapy can “cure” me at this point. Although anything is possible, I do not think it probable. Also, and this goes back to the foundations of health idea – chemotherapy clobbers me. I am so sick on chemotherapy that almost all of my foundations of health are completely devastated during chemo.
Both before and during chemo, we researched which immunotherapy might be available to me. I decided to try to get one of the two approved anti PD-1 inhibitors, Keytruda (manufactured by Merck) or Opdivo (manufactured by Bristol Meyers). By the time I had finished cycle 3, I had been approved for Keytruda. Ultimately, I was able to get the drug free from Merck. My oncologist gave it to me once every three weeks from mid-June through mid-November of 2016.
12. What is immunotherapy?
Answer, Sam Stern: Basically, you’re trying to train your immune system to recognize and attack the cancer. The immune system doesn’t necessarily see the invaders for what they are and allows the cancer cells to grow. What immunotherapy is trying to do is train the immune system to identify the invaders and to root them out. So instead of chemotherapy where you’re killing all cells (both normal and cancerous), immunotherapy is targeting the bad cells or certain parts of the cells. It is less toxic, and there are significantly less side effects. If your system can be trained, you can have long-long-long-term remissions or “cures.”
The exciting thing is that it should work for all types of cancers. It seems like a majority of clinical trials are looking at anti PD-1s and various cancers. They are doing it both as monotherapy and in combination with other immunotherapies, PARP inhibitors, and chemotherapies. They are also looking into the idea of using something like radiation or ablation to kill the tumors and giving immunotherapy around the same time, so that the immune system can learn what is cancer by cleaning up the cells that were killed by the ablation or radiation. The majority of doctors I have spoken with think that immunotherapy is the wave of the the future in cancer treatment. They also think that the best results will happen when an immunotherapy is taken in combination with another immunotherapy. If there is anything I regret in the treatment decisions I have made to date, I think I would have tried harder to find another immunotherapy to take with the Keytruda.
13. How are you doing right now?
Answer, Sam Stern: I’m pretty sure I’m in a state of recurrence again based on symptoms, scans, and tumor markers. I have been consulting with my team of doctors to discuss options. Originally, I was thinking I would do some more chemotherapy to knock the cancer down again. However, after talking to several doctors, I think that I have a couple months window where I can do something to try to take advantage of my hopefully increased and excited post-Keytruda immune system, instead of killing it off right now with chemotherapy.
My local oncologist has sent in a prescription for Rucaparib, a PARP inhibitor that was approved a few weeks ago. It is unlikely that my insurance company will agree to pay for it, so I suspect we’ll have to appeal and try to convince them to pay. I am also trying to get another drug called Plerixafor off-label. This is not a cancer drug. However, Dr. Brown found that my tumor had a CXCR4 protein, and this drug targets that protein. It could take months to get these drugs, or I may not be able to get them at all, but my approach is to have as many options as possible.
I am also hoping to consult with an interventional radiologist this coming week. He treats cancer by ablating tumors (usually cryoablation) and then injecting immunotherapies directly into the tumors that have been ablated. This approach sounds very smart to me and exciting.
I also wanted to say that for many years we have been thinking about having a vaccine made from my tumor. We cryopreserved some of the tumor from my 2014 surgery for that purpose. The vaccines have to be made out of the country, require months of travel, and are very expensive. This is not something we are considering right now, but again, I love having ideas for the future.
Although I am in a recurrence, my spirits are still high. Having a team of doctors that are open, willing to work with one another, and willing to allow me to captain my own ship seems essential to my well being, sense of hope, and feeling of empowerment. I have found that most people (doctors in this case) want to help you. However, you may not have the same style or ideas. I do consults with doctors by phone when I have to but really prefer meeting them in person. I think something happens to us when we are in the presence of others– our hearts open, and we are much more likely to relate to them as human beings, not just a person with a disease. I have consulted with approximately three dozen doctors, many of which continue to help me.
14. This cancer is very aggressive, and you were told you might not make it a year when diagnosed. What do you think has been the key to what has now been a five and a half year battle with this disease?
Answer, Sam Stern: I don’t think any of us know the reason why some of us survive longer than others. Some of it is probably luck, some of it is the genetics of your tumor, and some of it is access to quality medical care and doctors. Some of it is privilege – privilege of your class, your race, but also your support system. My husband, my family, and friends – they’ve been there, researching and supporting me for six years.
Also, I started a spiritual practice twenty years ago, and it sits below everything I do – how I react, how I interact, how I hold these decisions, how I hold this fear going through these hard treatments…how I use my mind, how I grow. I have a gratitude practice and a compassion practice both for myself (first) but for others as well. For me, I think, “Wow I was so lucky I started this practice so many years ago,” and I’m grateful that I have it to help me through this.
Through this journey, I have learned to listen to myself (my intellect, my instincts, my longings, my values) and trust myself. Even if I am afraid, I ask questions over and over until I understand what I am being told. I push my doctors to consider things they might otherwise not consider. I discuss the difficult things with my family and friends. I look within myself to better understand what matters to me and what I’m willing to put up with– both treatment and life-wise. I focus on what is happening now, rather than the future or past. I laugh a lot and enjoy as much as I can every day.
The thing is, I love my life, and I feel that this life is so great. We all go through something. I have cancer, and everyone in my community knows this. We all know someone who has cancer. And the thing is I’m not ashamed or afraid at all to let people support me. It’s through our vulnerability that we connect to people. So I want to share my story, I want to encourage people… let people see you, let them help you; you are helping them by letting them help you. It’s through this vulnerability, through this shared experience, that you can see the beauty in the world.
It’s that feeling that we’re all in this together.
15. What advice would you give someone facing this challenge you’ve faced?
Answer, Sam Stern: You need to listen to yourself. You need to be clear about what you want. We are all different, and what is right for us is as different as we are. I am, as you can probably tell, a strong advocate for myself. I do not mind getting several opinions and having to figure my way through them. I don’t mind negotiating, questioning, and asking for what I want. This is certainly not for everyone. You need to make sure what you are doing feels true to you– that you are aligned with it. Tell people what you’re going for, what your concerns and difficulties are, what you want, and put yourself out there. Ask for help. Trust yourself.
16. One last question—What are you looking forward to this holiday season? (interview was conducted 12/21/16)
Answer, Sam Stern: [Laughs] Well, you know, I want it to keep snowing and I want to ski as much as I can. Of course, spending time with family. I just love the holidays and Nevada City; if you haven’t been here you should come. There’s just always something wonderful going on. Just being with friends and family and taking some time to relax.