Dr. Al Danenberg ● Nutritional Periodontist
July 10, 2022 [printfriendly]
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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19 Comments
As I sat here reading your latest update to my husband, I stopped and said to my husband “why don’t they just slide Al onto a cot and then gradually upright him?”. Lo and behold, I continued reading to find that you had to come up with the idea yourself and relay it to your care team…smh. It’s a valuable message Dr. Al for us to be our own advocates. Thank you for sharing. My thoughts and prayers are with you as you continue treatment and God willing, you will get the pain relief you seek absent any further damage to your body.
Dear Dan, Try the honey Life Mel Honey from Zufglobus.com It has proven to help people undergoing cancer therapy. They even did a double blind study publpished in the Journal of Medical Oncology. I have given it to many of my patients who have had chemo & radiation.
I continue to be amazed and inspired by you, Dr. Al!!! Sending you much LOVE and healing prayers. Thank you for sharing and educating us.
How did the Darcalex cause such problems? I am on it also.
Darzalex is an excellent immunotherapy drug for multiple myeloma. However, after about a year on this drug, the side effects I experienced all at once outweighed the benefits.
I thought you said it was a bad injection.
The bad injection may have caused the combination of side effects to affect my immune system. Then I contracted COVID that further stimulated the reemergence of multiple myeloma. From that point, I had several ups and downs.
Do you mind explaining the problem of the injection? I had a nurse give it to me fast not over 5 minutes. I’ve been dizzy for 3 weeks so far.
I explained the problems with my Darzalex injection in this Blog: https://drdanenberg.com/my-cancer-journey-i-think-i-had-covid/
Thank you again for sharing 🙏❤️
Dr. Al, thank you for the reminder. Unfortunately, vigilance is necessary wherever we go for treatment.
I can only hope that your pain will be lessened soon. Again, thank you for sharing your journey with us.
Hugs, love, and prayers to you and your family.
i hope you ask for and receive HBOT treatments post-radiation!!! HBOT – hyperbaric oxygen therapy. best.
I know you are into more natural healing so I would recommend joining Telegram and then join the “Dirt Road Discussions” I think you would be very interested in the information on that channel. I have been following the protocol and seeing much improvement myself. Diane
During my husband’s horrible ordeal during his chemo, radiation and post-op surgery for esophageal cancer, I learned quickly to not leave his side for one second. So many mishaps, some due to overwhelmed staff, but some outright malpractice. There were 2 instances that I knew I had to make something happen or I would lose him. Thank God, the staff was so afraid of me as I made a formal complaint regarding his lack of care, that when I screamed, they listened. It helped that I was an RN, but anyone being treated in the medical system needs an advocate.
So Fenbendazole did not help? I’m taking Ivermectin and Fenbendazole. Hoping and praying!
Personally, I have not seen any benefits or any harmful effects from fenbendazole yet.
Al, so sorry to hear about the painful complications caused by unaware medical personnel. I have smoldering myeloma and have not started treatment so am following your journey with interest. It’s my understanding that a chemo-plus-steroid regimen is the standard of care for myeloma and for insurance to cover treatment, that must be tried first. It’s great that your oncologist is willing to do other things but have you been able to get insurance coverage for the immunotherapy?
I had a blood clot in my right leg that persisted after I broke my right femur. The chemotherapy could not be performed with an existing blood clot.
So happy to see your emails still coming. I don’t read all of them , but seeing them in my email list makes me smile and be glad
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