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My 3rd Serious Setback

Dr. Al Danenberg Nutritional Periodontist

August 19, 2019

 

 

 

My 3rd Serious Setback

 

My journey with aggressive multiple myeloma started with my diagnosis in September 2018. One fact, which defined the extent of my disease at that time, was that my bone structure throughout my body was riddled with holes. These lytic lesions were the direct result of the bone breakdown process from my bone marrow cancer. My weakened bones were subject to pathological fractures. “Pathological fractures” are caused by a disease, rather than an injury. Both of my previous setbacks were related to pathological fractures.

 

Recently, I learned that I have the acute potential for other pathological fractures – in the thigh area of my left leg and the humerus in my right arm. My oncologist ordered a PET/CT Scan[1] about a month ago. He observed an expanding lesion in my left femur which was breaking through the cortex of the bone. Basically, this meant that I am in danger of my leg fracturing. My weakened femur may not be able to support my normal body weight. A fracture in my leg would cause severe pain. Also, there was a lesion that was expanding to a lesser degree in the humerus of my right arm.

 

After the PET/CT Scan, I scheduled two appointments – one with an orthopedic surgeon and one with a radiation oncologist. Both specialists said that there was no way to prevent another pathological fracture. The orthopedic surgeon suggested that a rod be surgically placed through my femur to help support my weight, but it wouldn’t prevent a fracture. The radiation oncologist said that radiation might help with pain but could make the femur weaker. Also, it appeared that the lesion in my humerus was not a great concern at that time. Since I was not having pain in the femur or the humerus areas at the time of the appointment, I elected to do nothing for the time being.

 

Meanwhile, my blood chemistries continued to show relative stability with some ups and some downs. And my oncologist, whom I saw after the bone scan, believed my current chemistries were not showing a spike in my bone marrow cancer. However, there were signs of slow deterioration in my bone structure.

 

 

3rd Serious Setback

Then, things changed. The week before Friday, August 9, 2019, I began to have sharp pain in my triceps and biceps of my right arm. The pain became severe. My right arm could hardly function.

 

I had new x-rays of my right arm on August 9th. The results showed multiple erosions of the humerus of my right arm and confirmed the worse – another pathological fracture. The radiation oncologist said that radiation would not stop the pain from the fracture area, but it might help relieve some of the pain from the lytic bone lesions. However, I am dealing with innumerable bone lesions throughout my body – all of which could become symptomatic.

 

The next stage of my journey is becoming clearer to me and my medical team. I will have to concentrate on pain management.

 

On Monday, August 12th, I enrolled for in-home hospice care for pain management.

 

 

From Me to You

I want to thank you for your empathy and support. I want to let you know how much I appreciate YOU. I also want to let everyone know that my unconventional approach to my cancer treatment has allowed me to live a quality life with dignity until now. That was, and still is, my goal. Certainly, I will continue with my integrative approach.

 

I know I have written about this over and over again. But it is important to remind you that I believe living without quality and dignity is not worth pursuing for me.

 

Knowing what I know now, I would not have treated myself any differently. I never would have accepted conventional treatment using caustic chemicals which might extend my life but would have destroyed my existing immune system. Again, my emphasis is to lead a quality of life. Longevity has never been part of my equation. I have no regrets.

 

If hospice can provide adequate pain management to the point where I can still function and write as I am doing now, you will continue to read what I continue to write.

 

However, I am a realist. I know I have a terminal disease.

 

[1] A PET/CT scan allows the radiologist to see both the anatomical structure and the metabolic functions of the complete body. It is perfect to see malignant masses and bone lesions on a cellular level.

 

 

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23 Comments

  • Mark Johnson

    Sorry to hear of your latest setback. I saw an inspiring documentary featuring an Australian actor, Tom Long. His last chance was CAR-T therapy. Whilst very invasive and devastating on the immune system, he recovered from this trauma and is now in remission.

    I have flowed your journey and understand and respect the choices you have made
    Maybe it is not too late to try something new?
    Either way, I wish you all the best.

    Reply
  • Heidi

    Thank you.

    and

    Love and light.

    Reply
  • Annika

    I’m so sorry to hear this, Dr. Al. My dad died of multiple myeloma, so I know how challenging it can be. I admire the open and honest approach you’ve taken with your readers – we can learn a lot from you! I wish you strength and peace as you transition into the next phase of your journey.

    Reply
  • Tara McWhirter

    May the Creator of the universe and of You bless you through His mercy and strength with help, healing, relief of pain, encouragement, and every form of help you need.
    God bless you Sir
    tara

    Reply
  • Ellen Davis

    So sorry that this is happening. I hope hospice helps you continue to have a quality of life you can live with. That organization was of great assistance when my mother was dying, so I expect they will. Wishing you many pain-free days.

    Reply
  • Christi Matthews

    Dear Dr. Danenburg,

    I wrote to you early in your diagnosis and do so again now to tell you that, of course, you and your loved ones are in my continued prayers. You’ve been an inspiration and an incredible example of how one lives – and dies – on their own terms. It’s my earnest hope that your pain can be managed to allow for as much quality time with loved ones as remains to you.
    THANK YOU for sharing your knowledge, wisdom and this final journey with your readers. I have read your articles for a number of years, but have had a sincere and heartfelt interest since your diagnosis. I’m incredibly grateful for your presence in this world, Sir.
    And one more thing … though organized religion has failed you, God holds you – and your family – for all the days ahead.
    With Kindest Regards,

    Christi Matthews

    Reply
  • Lynne

    You are brave and you are kind. I believe life never ends and we will all be together in the end. Life here on earth is a mystery. I am sending you love and love for your family. All shall be well.

    Reply
  • Lois Hines

    I am so very sad to read of this setback, Dr. Danenberg. Living without quality and dignity would not be worth pursuing for me either.

    I have the utmost respect for you and the work that you’ve done and send love, comfort, and peace to you and your family.

    God bless you.

    Reply
    • Jim Nelms

      Dear Dr. Al, thank you for shining so brightly in the midst of some dark times. You have fought the good fight and run your race well. Peace be with you…

      Reply
  • jean delavigne

    We are thinking very positive thoughts for you……..God bless you……you’ve helped so many..Jean Delavigne

    Reply
  • Bart Trover

    Dr. Danenberg, As a physician who has an interest in naturopathic medicine, I enjoy reading your posts. I am saddened to hear that the disease has progressed. I share your sentiments regarding organized religion where mankind attempts to gain the favor of God through his own works. True Christianity is a relationship with God based on the person and work of Jesus Christ. He entered this world as the God-Man and died on the cross where all our sins were imputed to him and judged. The apostle Paul wrote – For by Grace you have been saved through faith and that not of yourselves it is a gift of God not of works so that no man may boast. Salvation only requires that is a split moment of time one believes in the person and work of Jesus Christ. I pray that in the coming days your mind will be content and that your body will be pain free and that you will seriously contemplate this message.

    Reply
  • Jenny Wilkinson

    Thank you for sharing your journey so far. I really hope the pain management keeps up quality of life for you. By including us and setting such a brave and wonderful example – you have given us a gift. Thank you.

    Reply
  • Martin Portner

    Al, I just what to let you know how much your e-mails are important to me. I am a a healthy clinical neurologist but my life has acquired much more value since I have been following you. Thank you so much. My energy goes to you from the southernmost area of Brazil. Martin Portner mrportner@gmail.com

    Reply
  • KAREN RAPOPORT

    Thank you for sharing your cancer journey. I send you love and pray for a peaceful transition.
    Karen

    Reply
  • Polina Sayess

    Al,
    I admire your strength and determination. Thank you for sharing your journey with us, ups and downs. It has been a privilege to follow along and to learn from you. You made and are making the world a better place. My thoughts and prayers are with you and your family.
    With much love,

    Reply
  • Evan

    You’re in my thoughts. I hope the additional care works well for you. I enjoy reading your blog and look forward to future blog posts!

    Reply
  • Debra G Rogers

    Dr. Danenberg,
    I have followed you emails for a couple of years. I am a dental hygienist and have worked in several periodontists’ offices. I have always loved this area of dentistry because I can see that I am making a difference. I admire your bravery and your honesty. As well as your expertise in the field of periodontics. Thank you for keeping me always learning.

    Reply
  • Marianne Sievert

    Dr. Danenberg, I wish you the very best and thank you so much for sharing!

    Reply
  • Allison

    I think of you often. Thank you for sharing all of your thoughts with us. You are a role model of how I would hope to handle any crisis, with knowledge, empathy and a positive attitude.

    My prayers are with you and I hope to hear from you soon.

    Reply
  • Rosemary Barrow

    Dr. Danenberg,
    You are walking your path with courage and integrity, and I so appreciate you sharing what you’ve been going through. I’ve been following you since before your diagnosis and I want you to know I deeply appreciate you and your work, and especially how you’ve chosen to show up for this last year as you’ve navigated this condition/illness. It’s been incredibly moving and you are an inspiration to me (and undoubtedly many others!)! I’m so happy for you that you can stand in this place where you are now & feel no regrets. Peace is such a great gift. I have learned so much from you whether health- and dental health-related or the depth of courage in your spirit so I want to express my utmost gratitude to you!!! Sending you comfort, peace, light and love. May you be embraced by & filled with all of these and by those people you love most & who love you most in your life.

    Reply
  • Michele Drielick

    Dr. Danenberg,
    Thank you for sharing your often witty, always thought-provoking and extremely courageous journey.

    I followed your posts…cheering you on silently from afar. Your thoughts about medicine, humanity and the fragility of life was a gift to us all.

    Please know that you touched the minds and hearts of so many.

    For now, I wish you only peace, comfort and clarity. Thank you for your shining, inspirational light. ❤️

    Reply
  • Jeri Lee

    Dear Dr.Dannenberg,
    I am saddened to hear about your latest setback. I am still hoping for your recovery. Work your plan. I am sending positive thoughts you way.

    Reply
  • Maria

    Send you some love

    Reply

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