My Cancer Journey
– Be Your Own Advocate! –

Dr. Al Danenberg Nutritional Periodontist

July 10, 2022

This is an ongoing journey, but I want to describe what has happened to me since my last cancer update. The lessons I have learned boils down to the fact that each of us must be our own advocate.

But a little history to bring you up to speed with me …

 

A Little History

As you may know, I’ve been transparent with all my experiences – good and bad – since my diagnosis of incurable bone marrow cancer in 2018. Some of my setbacks have been severe.

At no time have I accepted chemotherapy. My belief has been that chemo was too destructive to my immune system in general and would not cure me because my cancer was incurable. My goal has always been to lead a quality life as best as I could until the end.

But I have not rejected all conventional treatments. I’ve integrated newer treatments offered by my oncologist to help my body heal. These have dovetailed with my 11 Unconventional Cancer Protocols.

The recent setback, which I described in my 6/19/22 Blog, My Cancer Journey – Old Pain; New Pain, caused me to have bone pain 24/7.

To deal with the pain, I had to resort to medications – Advil, Tylenol, Gabapentin, and Percocet. And to prevent constipation from the narcotic, I also took Senakot S. But the pain continued and progressed as it moved from my vertebral column to different parts of my body. It encompassed my entire rib cage. It was piercing, especially when I took deep breaths.

The pain was a result of the activation of malignant plasma cells after severe side effects from Darzalex (an immunotherapy drug) and the resulting COVID infection several months ago.

Much of the pain was the result of the cancer cells eating bone away from the inside out. Therefore, my bones were fragile and could be broken easily.

But I was offered a solution by my oncologist. Targeted photon TrueBeam radiation therapy could kill the cells that were the culprits of the pain. While not curing the cancer, it would be a means to help me return to my quality of life.

Here is a video that explains TrueBeam Therapy

 

For me, it was a no-brainer. Targeted Radiotherapy was what I did.

I also was told that the radiation would continue to destroy malignant cells for another 30 days after the actual irradiation of the areas.

The targeted treatment began on Thursday, 6/23/22. This was a daily regimen lasting less than 15 minutes per session over 10 consecutive weekdays.

But there are side effects from radiotherapy that a patient must know if he or she wants to make an informed decision. And there are precautions a patient could take to prevent or minimize them.

 

Side Effects & Precautions

Some of the side effects from radiotherapy could be uncomfortable, painful, and debilitating. For me, it was surprising that no oncologist in the radiation clinic where I go described them in detail to me. I guess that most patients in other clinics are not thoroughly informed of these potential problems. And I’m sure that most patients are not told how to offset them as I’ll describe below.

Here are some of the side effects of radiation that concern me:

  • Creation of unhealthy free radicals which may damage healthy cells adjacent to the cancer cells
  • Damage to the mucosal tissues of the gut creating mucositis (Mucositis is inflammation and ulceration of the digestive tract lining, which can extend into the mouth causing painful and debilitating “sores”.)
  • Disruption of the gut microbiome which could cause gut dysbiosis and diarrhea

Here are some precautions that might prevent or offset the previous side effects:

  • Molecular hydrogen will neutralize unhealthy free radicals that are created by the radiation.[1] Therefore, I consume molecular hydrogen in the form of hydrogen rich water twice a day.
  • Raw local honey has been shown to prevent mucositis and decrease the severity in patients receiving radiation therapy for cancer.[2],[3],[4] I began eating 1-2 teaspoons of raw honey about 4-5 times a day starting the day before my radiation treatments and will continue for at least a week following the end of my treatments.
  • Specific spore-based probiotics (HU58 and RestorFlora) will increase the diversity of the gut microbiome. Also, nutrients in bovine colostrum (Colostrum-6) will assist the health of the gut and bind to toxic elements in the gut. I will consume these during radiation treatments and continue them for at least 3 months.

 

Serious Complications

Although I prepared myself for the potential side effects I just mentioned above, I was not prepared for what happened.

And serious complications did happen for the first 5 sessions!

For each treatment, I had to lay down flat on a metal table that was part of the TrueBeam machine. Because of my compression fractures and masses of cancer cells, this was difficult and painful for me. But once I was flat on the table, the pain resolved, and I was OK for the treatment.

However, after each treatment, I had to be lifted off the metal table. The technicians pulled me up to a sitting position. While the technicians lifted me, I had severe pain in my back and ribs. Immediately, I had difficulty breathing. The technicians were aware of this.

But for 5 consecutive sessions, the pain got more severe every time I was lifted off the table. And the technicians said nothing about making it easier for me!

In the morning of the day before my 6th treatment (6/30/22), I had such severe pain and difficulty taking a deep breath that I had to go to the ER by ambulance.

The doctors in the ER prepared me for a CT Scan with a contrast dye. They wanted to see what was happening with my spine, ribs, and the malignant masses. They also wanted to rule out any blood clot, collapsed lung, or pneumonia.

I had no blood clot, no collapsed lung, nor pneumonia, but my malignant masses were increasing. In addition, I had some fluid accumulating below my lungs (pleural effusion). But the ER doc said I had more cracked ribs than I had when I started the radiation treatments!

The cracked ribs were creating pain and difficulty in breathing. But why did I have additional cracked ribs?

The answer was disconcerting.

When the technicians lifted me off the radiation table, they put pressure on my fragile ribs and broke them.

Yes, the radiation techs broke more of my ribs every day for 5 consecutive days.

And the proof that these new rib fractures occurred after the technicians did their job was confirmnd in the CT Scan that was taken in the ER.

Wow!

After I was discharged that day from the ER, I called the radiation clinic and stopped the 6th radiation treatment for that afternoon on Thursday, 6/30/22. I explained to the physician’s assistant that I had to go to the ER and all my records where there for the radiation oncologist to review.

The PA called me back and relayed that the radiation oncologist suggested that I take a break until 7/5/22 and then make my decision about completing the treatments.

I now had to adjust my thoughts about killing the malignant cells, healing the broken ribs, and alleviating the pain.

Rest, pain meds, and amazing support from my wife were the steps I needed to take immediately. I then made the call to my radiation oncologist on the morning of Tuesday, 7/5/22.

 

Be Your Own Advocate

This is my advice to everyone. You must be your own advocate to get proper treatment.

I called my radiation oncologist on Tuesday, 7/5/22. I asked myself, “Why did I have to tell them how to do their job?”

I had to suggest something that they should have arranged for me from the beginning of my radiation treatments.

I had to tell them that they needed to place me on a gurney that could raise and lower the upper part of my body automatically. They could wheel the gurney into the radiation room, slide me onto the radiation table, and then slide me back onto the gurney after the treatment. Then, they could slowly raise my upper body with the gurney so I could get into a wheelchair. All this would not put pressure on my ribs and would prevent any further rib fractures.

My biggest concern is that no one in the radiation clinic suggested this option. I had to advocate this by myself. And at least one of the technicians who worked on me was defensive because I spoke out.

 

My Thoughts Moving Forward

I restarted the radiation treatments on Tuesday, 7/5/22. I have 5 more sessions before I’m done. The radiation treatments should kill the masses of cancer cells and help resolve the pain.

Of course, the broken ribs will have to heal on their own. I have had previous experience with broken ribs and know this will be successful.

I am happy to report that I never developed mucositis and never had diarrhea or gut distress. Maybe my precautions were effective!

My goals are to …

  • Continue to live the highest quality of life. I’ll do this by giving my body the best nutrition and gut health I can which will improve my immune system as best as possible.
  • Publish my new book in several months titled, Eat As If Your Life Depends On It.
  • Continue with, and emphasize, my 12-Week Balanced Metabolic Coaching Program to all who are interested in overall wellness.
  • Actively publish my Blogs.
  • Personally answer all questions emailed to me from viewers and followers.
  • Continue to be grateful for the lessons I am learning from this incredible cancer journey.
  • Share all that I learn and be as transparent as possible with my successes and failures.
  • Make beautiful memories with my wife, other family members, and friends.

Throughout this journey, I’ve been my own advocate. I’ve taken information from many doctors, researched my options, and made my own decisions. I encourage you to do the same. You know your body and its abilities better than anyone else.

Don’t just take some guy’s word off Facebook over a trained medical provider without doing your due diligence. But also, remember that not every doctor is the right fit for your care. Take the time and ask questions to ensure you are working with the right people.

You have the power to find the option that is best for your unique situation. Then, don’t be afraid to tell your care team exactly what you need from them.

I can attribute my success this far in my journey to many factors, but one element that stands out is having an oncologist that lets me do things “my way”, while providing me the support I need.

You are your own best advocate. Never forget that!

[1] https://www.sciencedirect.com/science/article/pii/S0753332220307824?via%3Dihub

[2] https://www.sciencedirect.com/science/article/abs/pii/S1744388118305462

[3] https://www.sciencedirect.com/science/article/abs/pii/S0020748918302001

[4] https://link.springer.com/article/10.1007/s00520-019-04722-3

 

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