Hope and the Second Opinion

I'm lucky and I know I'm lucky.  I feel very lucky to live near New York which is rich with doctors who are great thinkers and innovators.  I had the privilege of meeting a new doctor this week for a second opinion.   He was congenial and kind and fun to talk to.  

Then the breakthrough happened. "Your bone marrow cancer and the cancer in your blood are not as bad as the tumor is on your spine.  What would you think if we stopped the KRD (chemotherapy) and just focus some strong radiation on your spine to eliminate the tumor?  You are too young to have to go through years of chemotherapy."  I do indeed love being told I am young.  I am not.  

I almost got up and danced.  This was the most thrilling idea anyone has presented to me since November 1.  No chemo means that maybe my immune system could have a little break.  Gamma globulin therapy infusions could support my immune system.   No serious sides effects of those strong drugs for as long as this works.  

As far the doctor said, the worst case would be that my cancer gets worse and I have to resume the chemo.  Even if I had a three month respite from the drugs, that would be three months of lower risk living.  Blood tests each month would monitor my cancer levels.  He said that he has had patients for whom this has worked for years.  Once it stops working, one returns to standard protocol: chemo, stem cell harvest,  bone marrow transplant. 

I have the highest regard for people who challenge the status quo when it is a smart idea to do so. I often think it is a smart idea to do so.  I loved this approach and I was so happy to hear an alternative to the 'standard of care' which to me means 'treatment on autopilot.'  It really felt like this doctor was taking my weak immune system, my strong medicine regime and my imbalanced cancer diagnosis into consideration when suggesting a plan.  No cookie cutter.  I was so deeply happy.  I felt hope for the first time in a long time.  

I first need to have a PET scan (DWI B MRI) to verify that I don't have small tumors on my spine to ensure that I would be a good candidate for this protocol.  I pray that this is the case.  If I am not eligible, I will have had a few weeks of hope making my life feel completely. different.  I will have had the profound reassurance that there are doctors who think and question 'standard of care' protocol when it may not been the perfect fit.  

Not every patient may want to assume the risk of a new protocol.    I'm very respectful of the fact that each person has unique needs, priorities and faith in their doctor.    If you have found the doctor who makes you feel that your specific situation is being prioritized above your doctor's need to do research or to follow a text book 'standard of care,'  please realize how lucky you are.  It is lucky to feel heard and understood. 

If you don't feel 100% comfortable that your doctor is balancing your chemo side effect risks, your immune system support and your cancer care, please seek a second opinion.  And a third opinion, if necessary. 

Why did this doctor have the courage to suggest something new?  He sees multiple myeloma patients with varying needs every day. "The doctor treating you in CT now probably treats 10-15 patients a year.  I'm seeing 21 patients today," he explained.  This sounded arrogant to me, but I reasoned that big cities and big hospitals are generally great rlearning centers for doctors with a wide range of patients.  

Be safe.  Stay warm.  Keep the faith that you will find the perfect fit for you.  Never lose hope.  Write me if you have questions. Please. 

Sending love and support. 

POST SCRIPT: APRIL 2022.  I later learned from other doctors that this doctor did not give me the full picture nor did he properly take the severity of my situation due to the chromosomal abnormalities into consideration.  He neglected to tell me when asked (six times) that my cancer could come back much stronger after the chemo was stopped.  He neglected to tell me that the priority in care the first year after diagnosis is eliminating as much of the cancer as possible, as aggressively as possible.  Other doctors told me that this radiation approach was irresponsible in my specific case due to my 'high risk' genetics.  I decided against the radiation approach for this reason.  I am concerned that this doctor gave me incomplete or incorrect information.   The risk that he was prepared to take with my life and my health was inexcusable to the point that I feel that he should not be seeing patients.  If I lived in remission for a few years, he would have looked like a hero.  Had I died as a result of a bad or early relapse, no one would have known of his advice. 

PRESS THE SMALL WHITE ARROW AT THE TOP LEFT OF THE PAGE FOR THE NEXT BLOG POST.