Saturday, March 29, 2014

Second Opinion

Thursday was the big day where we had our appointment at Mass General with Dr. Abramson for a second opinion on the diagnosis and treatment plan.  We have no lack of confidence in Dr. D'Silva and the team from the Lahey Clinic, but second (and sometimes third or more) opinions are important to get when you're dealing with cancer, especially types that offer a number of different treatment options.  Dr. D'Silva himself actually arranged for this visit which says a lot about him.  Dr. Abramson is the director of the Lymphoma Center as well as a professor at Harvard Medical School, so I was anxious to get his assessment.  My entourage for this appointment consisted of Tiffany, my parents, and my older brother John.  It was a cozy ride down to Boston but we made good time and found our way to the Lymphoma Center and checked in.  I learned that we would be seeing Dr. Abramson's fellow, Dr. Oser first, which was fine with me; the more lymphoma specialists the merrier.


We were called in exactly on time and piled into one of the treatment rooms.  After the nurse took my vital signs and asked the standard questions, she gave me a paper that listed my care team from Mass General. This listed all of the doctors and nurses I would have access to.  It made me feel good to have another whole team of experts that would be available to me.  Soon after, Dr. Oser came in and introduced himself to everyone.  He had reviewed my case and spent most of the time talking about the most recent pathology report from Mass General.  The biopsy was reviewed by the pathologists there after I received my initial diagnosis and there were some differences.  While the initial results indicated follicular lymphoma with an aggressive type similar to diffuse large B cell lymphoma, the latest pathology showed it to be straight follicular lymphoma, which is a slow growing type.  Apparently I am right in the middle as far as slow growing vs aggressive, but it's amazing to think that I've had this for years.  After about 30 minutes or so, Dr. Oser left with my discs to go review the CT and PET scan results with Dr. Abramson.


Another 30 minutes later, they both returned and Dr. Abramson introduced himself to everyone.  He started from the beginning, educating or reeducating us on what exactly lymphoma is at the cellular level, all of the different types, and then my specific type.  He explained that for slow growing or indolent lymphomas, if it is "behaving itself" or not causing any symptoms, they prefer to leave it alone until treatment is necessary because earlier treatment doesn't have any impact on overall lifespan.  In my case, even though I don't have any outward symptoms, the fact that there is so much of it encroaching on my organs means I need treatment.  He reiterated that this type was not categorized as curable, but treatable, meaning it usually returns at some point down the road (although personally I don't have to accept that right now.)  However, there have been significant advancements in lymphoma treatments very recently with even more expected in the near future.  "There's a lot of work happening for Joe," he said.

Next we talked about treatment options.  This was the part where we learned some new information.  He talked about my current planned chemotherapy regimen, R-CHOP, as well as another that has seen recent success, R-CVP, and a newer regimen called R-Bendamustine that was only FDA approved in 2008.  He also told us that I qualify for a current clinical trial for a drug called Lenalidomide, which has seen some early success in treating lymphoma.  It's a non-chemo drug, so it would be less toxic, however there is no long term data on it and if I even if joined the trial, there would only be a 50% chance that I would get it (the other half are given R-CHOP) and I'd have to drive into Boston for the treatment vs. getting it in Derry.  Given all of the options available, his recommendation was that I go with the existing plan of the R-CHOP since it's a proven treatment with over 40 years of data behind it.  I'm young enough to tolerate it and according to him, if it comes back there is a better likelihood for advanced treatments in the future that would come with less unknown risk.  He also strongly recommended "maintenance therapy" of getting just the Rituximab every 2 months for 2 years after the R-CHOP ends, which has shown to extend remission time.  Rituximab won't cause any of the chemo side effects as it is just an antibody that targets cancer cells to help our immune system kill them naturally.  We all agreed with his conclusions.


We spent the next few minutes asking some other questions, including "the" question of what could have caused this.  He confirmed what we had already been told, that it's a random genetic mutation and nothing I did caused it.  He also told us that it's not hereditary, so I couldn't blame my parents or pass it on to my children.  At that point he had spent around an hour with us and we were satisfied that we had all of the information we needed.  He gave us his card and said to contact him any time if we have questions or want to come back for another appointment.  We left feeling even more informed than we already were and more at peace with the current plan.  We were also very impressed with Dr. Abramson and grateful to have access to him in the future.  So now we're down to three more days until chemo starts and I'm ready to get on with it.

Phil 4:6,7 – “Do not be anxious about anything, but in every situation, by prayer and petition, with Thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Relevant verse from this song: "..couldn't believe, it could happen to me, I guess we're all one phone call from our knees..."

9 comments:

  1. Our entire family has been praying for you, Joe! We will continue to do so in the days to come! Our kids pray for "Mr. DeLangie" at every meal too! :-) Be strong and courageous for the Lord your God is with you wherever you go!
    ~Cathy, Nathan and kids

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  2. I guess we are "one phone call from our knees". You are making all of us stronger in our faith, we know that's part of "the plan". Praying for your chemo to treatments to be successful with as little discomfort as possible, Joe. We love all of you so much! Big hugs and kisses to all!!

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  3. Joe ~ You are such an inspiration to so many. My prayers are always with you. I love you so much! Val

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  4. I can only surmise what you and your family is going through. My prayers with you. I am a 2 time cancer OVERCOMER! I choose not to say I survived. My case is different that it was caused in my senior complex from 2nd hand smoke. So I fight! And will not stop til God takes me home. http://janworthen.wordpress.com/2014/03/24/dealing-with-cancer/

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  5. Hi Joe, I'm Lindsey! I have a question and would love to talk with you. Please email me when you have a chance, thanks so much! lindseyDOTcaldwellATrecallcenterDOTcom

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