An attractive woman sits on a field during sunset with her two young suns, smiling.

Do you really need a cancer care advocate or is the basic care you receive from your public oncologist good enough? Read on to find out the truth about standard care and decide for yourself.

Joan was 45 years old when she was diagnosed with stage IV metastatic melanoma. Her public oncologist gave her the option of standard chemotherapy, which, according to studies, would’ve given her approximately less than a year to live. Since her disease would not respond to standard treatments, her oncologist told her that there were no other treatment options. She was told to get her affairs in order.

But Joan wasn’t ready to accept this – so she and her husband reached out to CTOAM. Our cancer experts helped them to access the right targeted treatments, among other things, and now Joan has been cancer-free for several years!

“I didn’t really actually believe it when the blood test came back with no cancer. Then shortly after that, the CT scan came back with proof that the tumours were resolving. We were also doing PET/CT scans through all of this. And in July 2015, the PET/CT came back that there was no evidence of cancer anywhere.” – Joan

Joan says that, in addition to getting the right treatment, she and her husband really appreciated the sense of hope they gained from working with CTOAM:

“Alex was just so positive – we enjoyed our phone calls with him because after we talked to him, we were always like, ‘okay, we can do this!’ There was always hope after we talked to him. There was always something we could be doing more of. You know, drink your green tea, take all your nutraceuticals…there was just always, always something positive.”
Read more about Joan’s journey with cancer.

Close up of doctor's hands holding up a sign that says Expert Advice.

Why Hiring a Cancer Care Advocate, Like CTOAM, Can Save Your Life

1. Access the Right Treatments for Your Form of Cancer

Joan’s public health care oncologist had been unable to provide her access to the life-saving drugs (immunotherapy) that she needed for her melanoma. The drugs that her oncologist would’ve prescribed for her stage IV diagnosis would’ve only worked for a few months. Without immunotherapy and the exact right treatment combination for the patient’s genetic mutations, melanoma is extremely hard to treat, let alone cure.

“My husband had done a lot of research and so we already knew that the old medications weren’t the answer – and that we needed to get this new medication. So we already knew that we weren’t going to be able to follow the protocols of the BC Cancer Agency. The advice I tell people now is that ‘you need to be in charge of your cancer care. You need to do more than what the oncologist is telling you and sending you to treatments – you need to know more.'” – Joan

2. Access the Best Drugs & Dosages According to the Latest Cancer Research

Joan’s public health care oncologist – through no fault of her own – was unaware of the optimal drug dosage that Joan should be on according to the latest research. When CTOAM provided Joan’s oncologist with Joan’s genetic test results and the latest peer-reviewed studies, her oncologist agreed 100% that CTOAM’s dosage recommendation was superior than what was, at that point, approved as standard treatment.

“There were a few different drugs that Alex had recommended. One of them was a standard drug. For that standard drug, 3mg was the standard dosage recommended by the cancer clinic. But according to Alex’s research, he said that I needed to have 10mg dosage. He said the studies were showing that the 10mg dosage is far and away better than the 3mg dosage: ‘If you’re going to do this, do the 10mg.'” – Joan

Blue and white pills with Cancer written on the center one.

3. Have the Chance to Get Expensive Drugs Completely Paid For

The targeted treatments that Joan needed cost around $250,000 CAD. Because CTOAM provided Joan with the data to back up the fact that she needed these drugs, her husband’s insurance company agreed to cover it completely. Joan received these life-saving drugs entirely for free!

“They wrote letters to them that said, “look at the studies…” and she sent them studies of what the success rates were for 3mg compared to 10mg. And the insurance company approved it! They paid for my treatment. It came out to, like, $250,000 in the end and they paid for it. So, yeah, that was pretty amazing.” – Joan

 4. Access Comprehensive and Accurate Genetic Testing and Anaylsis

The genetic testing provided by BCCA (British Columbia Cancer Agency) had actually missed Joan’s BRAF mutation completely, despite the fact that they’d been specifically looking for that mutation. (It is not uncommon for genetic testing to be poorly performed and analyzed within the public system.) When CTOAM facilitated a more comprehensive genetic test for Joan, our cancer experts discovered Joan’s BRAF mutation and used the results to determine the best treatments for her.

“I kind of fit the stereotype that I would’ve been BRAF positive. So the cancer clinic took my tumour and had it genetically tested. But when we actually had it done properly through CTOAM – and Alex [analyzed the results] more thoroughly – it turns out that I was BRAF positive!” – Joan

A word cluster with reds and yellows featuring the words pet scan, medicine, and other associated terms.

5. Access PET/CT Scans for Diagnosis and Treatment Monitoring

Through standard care, Joan had not been sent for a PET/CT scan. In fact, at the time, all of the PET/CT machines in British Columbia were out of order! CTOAM facilitated arrangements for Joan to travel to Seattle to access a PET/CT scan. After that, Joan’s public oncologist sent her for PET/CT scans, fully covered by BCCA, because she could see that Joan was going to get them done one way or another.
“I don’t fit into the protocol of getting a PET/CT scan done through the BC Cancer Agency. But of course it’s recommended, so I wanted to get one. When I needed to get one, there was only one in BC at the time – and it happened to be down. So I had to go to Seattle for it. And we had to figure out how to do that. But Alex recommended someone – a medical travel agent – and she hooked us up with everything. So they did all the arrangements, everything. After we had that one done in Seattle, my oncologist at the cancer agency started sending us for them here. So they were paid for by BCCA then. I think she realized that we were going to do it anyway, she might as well make it a bit easier.” – Joan

6. Get Evidence-Based Nutrition and Exercise Recommendations

 Joan had not received any advice on nutrition, or the importance of exercise, through standard cancer care. CTOAM provided her with specific instructions for what to eat, what supplements to take, which exercises to focus on, and the scientific research to back it all up. This gave Joan the proof she needed to feel motivated to make these changes, as well as have real hope grounded in scientific facts.
“CTOAM also recommended more [diet changes] for me, and this time there was science behind it [and it was more personalized]. It gave me a bit more belief in it, knowing that it had been researched: it wasn’t just airy fairy; there was some science behind it.” – Joan
Hands chopping healthy food on a wooden table.

7. Get Educated on What’s Going On in Your Body

Similarly, Joan hadn’t received any information on the science behind her cancer from her public oncologist. CTOAM’s cancer experts, meanwhile, educated her in detail about what, exactly, was going on in her body and the science behind CTOAM’s recommendations for drug treatments, nutrition protocols, and exercise regime. Because when it comes to cancer, knowledge is power.
 “Alex educated us really well. He just felt really smart to me, you know? So I felt like I had a bit better of a grasp of what was going on. I felt really well educated and I felt empowered by knowing the science behind it. And if we needed to talk to him, he was always there.” – Joan

8. Learning What to Advocate For and How to Do It

Joan’s dermatologist had urged her and her husband to be the ‘squeaky wheel’ – meaning, to advocate for better cancer care. But the problem was, they didn’t know what they were supposed to advocate for! How were they supposed to know which drugs, dosages, and tests they needed to get? CTOAM solved that problem by doing the research and telling them exactly what they needed to get and how to do it.
“What we’ve learned through all of this is that everyone – each doctor – has their limits and the only person who’s going to bring it all together is you. The only one who’s going to spearhead and drive you getting better is you. And that was one of the great things about CTOAM: Alex really brought together a lot of the different parts that we’d already researched a bit. And he put a lot more science behind it and behind why. The overriding hope was having this science foundation which meant that I knew I was getting the best treatment I could be.” – Joan
 A middle-aged woman sits at a table looking at a laptop computer with a glass of water nearby.

Give Yourself the Best Chance of Success with Science

Make sure you know all the latest evidence-based treatment options for your form of cancer! Both you and your oncologist will want you to have as successful an outcome to your cancer treatment as possible. Contact CTOAM today for a free consultation to learn how you can enhance your current cancer care and optimize your chances of a full recovery or, at the very least, a longer and higher quality life.

Published by on June 1, 2018
Tags: , , , , ,
3 Comments

3 Comments

  • Beth Ann Flewelling says:

    Hello ~ any advise you could share about helping stage 4 Multiple myeloma would be greatly appreciated. My husband has been battling this for almost 4 yrs. He went through a stem cell transplant, which only lasted a few months. He has been on every chemo drug available, and was told the new drug he is on (Nalaro) now is the last drug available. A patient shouldn’t take this drug if their platelets are below 50, my husband’s are between 10-15, just recently there were 7. He needs to have hemoglobin and platelets transfusions weekly. This new drug can cause your platelets to drop, but my husband, could not wait to see if his platelets would go up, because his oncologist said time was not on his side. So now we are dealing with even lower platelets. Anything you can share would be greatly appreciated.

    Beth Ann Flewelling

    • Michelle says:

      Dear Beth Ann, recently there have been many new drugs approved for multiple myeloma and it is now considered a curable form of cancer. However, it is essential to know the exact genetic features of the disease before you can decide which drug to use. Ninlaro is approved with lenalidomide/dexamethasone (IRd) for high-risk cytogenetic abnormalities defined as del(17p), t(4;14), and/or t(14;16).These are translocations where part of one chromosome gets attached to another. The fact that your husband’s stem cell transplant only lasted for a few months tells me that he probably did not have the correct drugs for his specific mutations. Additionally, I am concerned that he has some sort of internal bleeding that is leading to his low platelets as they typically rebound after a drug is stopped. I would suggest that he gets a tumor DNA sequencing panel such as the Foundation One Heme in order to determine;(a) The best chemo options, (b) potential targeted options, and (c) if immunotherapy is an option. WE can help initiate this process. I would also suggest that you contact our office and book a free 20min consultation.

      The CTOAM Team

Leave a Reply