Wednesday evening I met with Dr. Glenn Marshak, a family friend who wanted to hear the story from me and had also lined up meetings with the other Dr's. Based on the conversations and past discussions (he's known about and followed for a bit) he felt the Autoimmune Pancreatitis (AIP) could be the problem and he was glad I'm on the Steroids. He was not comfortable with the Whipple discussions and felt the CO Dr's we're possibly guessing and that the whipple was too severe (remember they cancelled the whipple 20 hours before the scheduled hospital check in time and 36 hours into the pre procedure prep). While I was with Dr. Marshak, he called another Dr to discuss and make sure i'd get seen the next day.
On Thursday, I had a 230pm Appointment scheduled with Dr. David Berz, a hematologist/oncologist, and it was moved to 11am. When checking into Dr Berz's office, there was a small area directly behind the receptionist with 6 chemo treatment chairs with patient(s) in each chair. As a former chemo patient, it made me incredibly uncomfortable because of the lack of space and privacy. While sitting there hearing the conversation (nurses and patients), not only could I reflect back to the feeling of treatment, I could taste it. Near the end of each treatment, they would give me Lasik, some type of diuretic used to make you go to the bathroom and flush the chemicals out. It (and whatever else they did) have a specific taste and smell which came back as I sat there.... feet from the patients getting treatment. As Dr Berz was fitting me in, I ended up waiting over an hour in the lobby before they took me upstairs to a room where I waited an additional hour. On a side note, they are expanding and the new space was great and much better suited to give space and privacy.
Before leaving Denver, I'd given Dr Berz's office electronic access to my medical records and I also brought hard copies and scans on disk so he was aware prior to our discussion of what's happened so far as well as why I was looking for additional opinions. He asked me to recap the past year and had a few additional questions that had not been asked before... mostly about blood work and tests. As Dr Berz agreed we're not seeing cancer now and that the Steroids/AIP seem to be the most reasonable source of the issue. As he is a hematologist, we talked more about the blood and he mentioned some genetic blood work he helped pioneer 7-8 years ago that has become pretty common and questioned if CO dr's were looking at it. As it wasn't familiar to me, he asked if they could take some blood and we would have results back in about 10 days. Dr Berz was great and, his take was, if the steroids do not solve the pancreas issue, there is a possibility of surgery (whipple or more) but we wont know anything until we see the post steroid scans on July 25th. Dr Berz then mentioned I have a 3pm with Dr. Nick Nissen and they got me his address....
I ubered over to Dr. Nissen office on Beverly Blvd and was initially told he was unavailable. Not long after, I realized all 3 of these Dr's were on a group chat discussing my case and soon after Dr. Nissen was available and met with me. His card reads "Director, Hepatobiliary & pancreatic Surgery" & Surgical Director, Liver Transplant Program" at Cedars Sinai. While i've not kept track, maybe we have 40+ Dr appointments in the past year and Dr Nissen was just different. I instantly felt like I was in the right place and this guy knew. So we recapped everything again (you'd be shocked to hear me talk about the pancreas including test results, scans and possible diagnoses) and he asked my concerns. Dr Nissen was also glad i'm on steroids and he feels this could clear everything up... and i'm sure you're wondering how.... According to all the Dr's, the scans on 7/25 are the most telling signs if we're dealing with AIP and if the steroids are working. Nissen said #1 goal is to identify if there is cancer and since right now there is none, he said #2 with AIP you treat the symptoms (acid reflux, pain, jaundice, etc) as there is really nothing else you can do. With the next scans, he wants to see if the bile duct structure is better (less blockage because pancreas/lesion is shrinking) and said there are times the stent could fall out on it's own as the duct goes back to its normal size. He felt this is a classic case of AIP as the pancreas is "sausage" shaped on the scans and he's not clear there is a lesion. While this is confusing as the other dr's have confirmed a growth and they've biopsied it as recently as 6/12, Nissen was comfortable saying he believes the July scans will show bile duct heading back to normal and no issue with the Portal Vein..... My big question was, if it is AIP and the steroids are a success, will I still need to consider surgery to save the protal vein. He said it's a non issue and not something I should have surgery on for a couple reasons. First, he's not convinced of the lesion and second, he did an amazing job talking about how the body handles this and said, in this situation if the vein was blocked, the blood would find another path (he also said he could transplant a shoulder vein if necessary but it's not usually needed). There was a 4th Dr I was trying to see but was unable to get the appointment. Dr. Simon Lo at Cedars was unavailable and then Dr Nissen asked if he could present my case at the next Tumor board on Thursday July 13th..... so Dr Lo could weigh in.
Near the end of the time with Dr. Nissen, he asked for my UC Dr's contact info as he wanted to follow up with them as well as send in a request for access to my next Scans. It just felt like he got it and was going to be ready and waiting to see the results. I felt like I was in good hands for sure.... again remembering I was 20 hours from the Whipple. Nissen was performing a Whipple on Friday morning.
That leaves us waiting for blood work follow up from Dr Berz office (around the 17th) and the July 25th appointments to see if the steroids have made a difference.
I started the Steroids on Wednesday June 28th and it took a few days for me to notice anything. I'm hungry all the time right now and feel better but not 100%. In speaking with Nissen, I said I still feel like crap and he suggested I take a PPI (Prevacid or Prilosic) to help and was a little surprised it had not been a suggestion before. I'll pick that up this weekend and get started.
I've been reading about AIP and it's easy enough to google if you're interested. First identified in 1995, it's pretty rare with about 10 people out of a million getting it and a little more prevalent in Japan. There are two types and i'm a little young for type one but possibly a little old for type 2..... The pancreas is fighting healthy cells thinking something is wrong with them. Again, no real solution, treat the symptoms and make sure there is no cancer. The Medical pages I read seemed to indicate little or no connection between AIP and Pancreatic cancer with less than 5% of AIP patients ending up with pancreatic cancer. I like those percentages.
Lastly, i'm registered with Mass General and expecting to hear back from Dr. Banks (Harvard) this week. He received my scans late last week and was having his group review. One more review and expected confirmation.
Thanks for getting this far and checking in. Also apologize for my snarky comments on the last post.... I felt terrible and probably should have picked a better time to share how I was feeling.
I'll post up when I hear from Banks or get some results back.
Sam
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