Deciding on the Trial

While the last post talked about getting into the clinical trial, in reality we were still pursuing multiple options, with the trial being the first on our list. We had reached out to several doctors, some we’ve dealt with before and some we’ve established a new connection. As a result of those contacts we felt we needed to review all possible options immediately in front of us. What we found were three topical areas:

Clinical trial, Liver directed therapies – radioembolization, chemoembolization, and Hepatic arterial pump. We contacted Memorial Sloane, Fox Chase, Johns Hopkins, St. Louis University (a specific doctor), Stanford (our “Go To” guy). The short story is below.

We went to Johns Hopkins to meet with one of the top Interventional Radiologists in the country – Dr. Geschwind. Wow. What an amazing doctor. He discussed both radio-embolization and chemo-embolization, both standard practices. He explained all options as we knew them, including the trial. His view was the best next step for Lynn would be to start chemo-embolization immediately. He felt it could reduce Lynn’s liver tumors quickly. He made our decision to start the trial very challenging – in a constructive way.

Prior to that discussion, we had a phone conference call with the special doctor at Stanford who has helped us since day 1. He also suggested either radioembolization or chemoembolization. What that told us was the top doctors felt the “standard” protocols would help Lynn.  Both doctors felt the trial ‘could’ be beneficial but were much more confident with the current treatments v. a trial.

Memorial Sloan was suggesting a hepatic pump, where they surgically install a chemo pump in the body and continuously inject high doses of chemo right to the liver. After researching this topic, we decided this was the least viable option.

So why did we pick the trial ?

Because all statistics on this cancer indicate “standard” treatments are marginally effective. And all standard treatments are focused on destroying the existing disease. Even the doctor at Johns Hopkins really had us feeling that chemo-embolization was the best option. We discussed this for hours. Finally, we decided the clinical trial was the right next step because it was novel in combining a preventative drug to help stop new growth with a standard chemotherapy to destroy the existing cancer. All other treatments were focused on the current, not the future. And no current treatment had proven to be truly successful. The balance we felt was – during the trial – Lynn’s condition would be evaluated weekly (blood work, liver conditions, etc.). If we find the liver functions are deteriorating, we can stop the trial – and then still pursue chemo-embolization at Johns Hopkins. Key in all this is the health of the liver. That is what has become the primary indicator.

Next post: The start of the trial….

Carl (for Lynn)

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10 responses

  1. Your thoughtful and focused pursuit of treatment is amazing. Your positive attitude is inspiring. Prayers and good thoughts continue.

  2. Your family is on quite a mission. You are all on the same page and focused on whats next..The Scheitrum’s are stronger than concrete and truly amazing ! Prayers are everywhere for your family. Hugs to Lynn for being such a tough cookie ! Best of Luck on this next journey …
    Deana

  3. Terry DeCristofano | Reply

    Thank you so much for keeping us updated on this journey. You are always in our thoughts & prayers! Anything we can do to help please let us know. God Bless all of you!
    Love, Terry, Bill & family

  4. You had some tough choices but are going with what you feel is best for Lynn. That is what is truly important. We are all here for both of you. If you need us for anything–call. We will all jump in as before.
    You are in our thoughts & prayers.

  5. Patricia Barth | Reply

    Wow!!! A tough decision to make…our thoughts and prayers are with you both through this process. Keep us updated!!

    Love, Kevin and Pattie

  6. Thanks you for the update. Your family is in my thoughts and prayers.

  7. We’re praying every day, good success on this!!!

  8. Lynn and Carl,
    Thank you for the update. I am sure the last few days have been difficult with what road to chose. It sounds like your team is the best. Your strength, faith, family and friends will be here to help you through whatever you need.
    Kathie

  9. Lynn – Thanks for the update. Tough choices… I wish you all the best & pray for the speedy restoration of your health. God Bless!

  10. Oh Carl, I think of you and Lynn every day and hope your daily life can be giving you the good times as you go along. It is worth all of this concentration and may the good Lord shine down on you and grant you long life. Love, Ferne

    P S I am still waiting for Service Elec. Mean time the T Vs are working O K, thanks to you.

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