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Pancreas Cancer

Finally went to Johns Hopkins. was posted 06/16/2016 11:47 am by Ricsuaq
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I made a thread a few weeks back about taking my dad to Johns Hopkins, here is the link. http://pds17.pathology.jhmi.edu/N/n.web?EP=N&URL=/MCGI/SEND1^WEBUTLTY(200,1246 076)/96580418

Well, we are home from our two day visit in Baltimore and Johns Hopkins Hospital. We met with a couple oncologists, namely Dr. Joseph Herman (radiation oncologist, co-director of the pancreatic clinic), but no surgeons. I guess we just arenít there yet.

I am feeling a bit... I'm not sure....frustrated?

My dad's tumor (head of tumor) has not grown, and has even shrunk a little. Alas, it is still too close to the blood vessels to resect. Dr. Herman recommends 3 more months of Gem/Abraxane at the local cancer center. After three months are up, we are due back at Johns Hopkins.

If things havenít changed much, Dr. Herman recommends a Phase II clinical trial (combination immunotherapy and radiation) for my dad that was JUST RELEASED TWO DAYS AGO. Even though 50 people have signed on for it, it still makes me a little bit nervous. Dr. Herman mentioned this is the first time(s) they are giving immunotherapy to a patient with localized pancreatic cancer who is already taking chemotherapy. He told me it is usually done with patients who had yet not received treatment, or patients who's cancer had spread.

I will try to explain the regimen as best as I can. I know many of you here might be familiar with these terms, but it's all pretty new to us.

Like I previously said, Dr. Herman recommends for my dad to undergo 3 more months of Gem/Abraxane here locally. After that, he wants us to go back to Hopkins and do a pet scan. If the pet scan says he needs more shrinkage, they want to put him on an combination immunotherapy regimen. It would be cyclophsphamide, pancreatic cancer vaccine, and pembrolizumab two times through six weeks. In addition, he would get 5 straight days of SBRT (radiation). After that, they will check again to see if surgery is possible. If not, a biopsy will be done along with two cycles of chemo, and immunotherapy every 3 weeks up to six times.

I understand completely that because of trials like this, we are where we are today with not only advancements in pancreatic cancer, but with all sorts of diseases. Still, I am bothered. I expected a clear, concise, proven plan of attack even though this disease does not cooperate. I didn't expect 'try this very very very new clinical trial that may or may not work'. Iím sorry if I am coming off as pessimistic. I donít mean to be. After all, maybe by the time chemo is finished, chemo will have done enough to make the tumor shrink and surgery would be possible.

One thing that left a sour taste in my mouth is we got a hint from another patient that Dr. Herman is leaving Johns Hopkins. It just makes me wonder why. Is JH not good enough anymore? Is the other institution offering more money to get the best doctors? Will we still be in good hands?

I am considering taking my dad to one more place for a third opinion, but fear he will reject that idea. It took enough convincing to get him to Hopkins.

Thanks to anyone who has read this. I appreciate it from the very bottom of my heart.

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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