Appointment Day with Good News!

Over the past week, while waiting for todays appointments, we were contacted 3 times regarding my "scheduled" August 4th Whipple..... as shown in my UCHealth Portal:

My health care provider approved the procedure, I was approved for Short term disability and asked to schedule a pre procedure anesthesiology meeting. We wondered if they knew something we didn't or just preparing for the worst.

When I got to the hospital today, they provided me an itinerary of the days events:

I started with the CT scan... pretty standard stuff although the nurse who put the needle in my arm asked to see the itinerary and, when she saw I had labs later, taped it up so they could use it again without the extra poke. Good thinking on her part. Scan went well and I headed up to meet with Cheryl, the NP and my Advocate.

I've emailed with Cheryl a bit over the past few weeks talking about the other Dr's, their opinions as well as asking questions about hockey, meds and travel.  I think she's been a straight shooter and when she came in, I asked about the scheduled whipple and told her I dont see any way i'm getting on that table next week. She was cool and understanding while telling me they're looking at the scans which  will tell the story.....  We reviewed meds, weight (up 10 lbs in the past 4 weeks...), medical history, etc with the understanding the multidisciplinary board would again review my case and make a recommendation. While she felt surgery was off the table (she has a cancer patient she wants to put in my slot), she again said they are waiting on radiology and would know more at the afternoon meeting.

They walked me over for labs and I was surprised at how many stickers printed out.....  she dropped these tubes on the table like pick up sticks and I had to snap a quick pic:

They pulled blood and sent me on my way saying to be back by 12:45 to check in for the 1pm. While not really enough time to go home and come back, I grabbed some lunch, read some emails and wondered what the hell they were going to say.

After checking in, they took me right back to a room and said the conference was still going on. Jen had a busy morning, was on her way for the big meeting when I texted her the room number and moments later, Dr. Del Chiaro came in with his classic....Hello Mr. Williams... and went right into it saying the steroids worked better then expected and there would be no reason to perform a whipple.  Jen walked in and he repeated it saying the steroids reduced swelling all over and they're now wondering if the "lesion" is scar tissue from the first pancreatitis episode. While they've seen these spots on the pancreas, he said they seem to be moving around and not always in the same place..... bottom line is (and he qualified it again saying without a thorough biopsy and removal of pancreas) there is no way to say it's not cancer but they are finally saying the diagnosis is Autoimmune Pancreatitis. He also said, if teaching about AIP, he would not use my scans as they are unusual and dont look like a typical patients scans. It's a consistent theme we've heard from every dr on this journey.

Del Chiaro said he is a surgeon who will perform surgery to help people get healthy and often save their lives and, at this point, we will be moving back to the care of Dr. Wani, the pancreas specialist. This was great news as we've felt there was a bit of a miss that we kept talking with the surgery guy and not the pancreas Dr. While it was Dr. Ed who suggested we "try" the steroids, why didnt we see him (or Wani) months before while we were talking with Dr. DC?

I've been a little challenged with Del Chairo's attitude.....  he's a little cavalier and maybe that's exactly what you need from the guys that's gonna make the cuts but it's a bit off putting when he says it's good to get additional opinions but then says, if the dr's call him, he will talk to them (without saying he will not make that call). One of his good friends is the head of Cedar's Surgical Oncology department, but he would not reach out to this friend to engage or make a connection with Dr. Nissen.  I dont know... seems like collaboration isn't a bad thing when considering cutting out someones pancreas.  But....  as I say that, I really like the guy and believe he's struggled making a decision because he understands how crappy the surgery could have been especially if he had to come back to us and say there was no cancer.  So, he then surprised me....  by acknowledging what a good job we've done. He thanked us for not getting hysterical at the news (good and bad) and for getting additional opinions which, he acknowledged, made a difference. I told him I have his cell number and will call to check in....

So, what's next?  We expect to hear from and see Dr. Wani in the near future with a call at some point this week. Big questions including do I continue taking the steroid and if so, what dosage and for how long? While I understand it's pumping me up right now, not sure how much longer I can take the constant need for food and round the clock appetite. Hungry.... all the time...  Other topics for Wani include use of PPI (prevacid, prilosec, etc) and how long I can take one, Meeting with a nutritionist to understand more about diet including what to eat and what NOT to eat as well as basic management of  AIP. I'm reading what I find on the internet but can any of you really tell me what I should do first thing in the morning?  Is it a big cup of water or fresh made organic celery juice or a protein shake? Yea, it's really confusing.   

I received a bunch of emails from UCHealth saying test results and Dr's notes from todays appointments were available. While I dont know what all of it means, there was an update on my August 11th ERCP appointment which read, "he is scheduled for stent removal on 8/11 and aware to keep this appointment."  Great news as they'll pull the stent and not put a new one in!

Sometimes I think I find the perfect word(s) and other times I know I miss the target but the sense of relief we've felt and talked about today is on point.  The whipple was cancelled at 11am on Sunday and I had a 6am check in the next morning for an 8am procedure.....  We were that close to a (possibly) unnecessary major surgery.  To all of those who suggested questioning things, getting 2nd opinions and helped us find Dr's, thank you. I understand we have to be our own best advocate and sometimes thats rough so I appreciate your constant nagging. 

The thoughts from family, friends and strangers make a difference and we're grateful for the support.  Lots more to follow as we learn about living with AIP.

And finally, while googling things about AIP, this shirt came up and is sort of funny....

Thank you for reading this, checking in and thinking of us. We appreciate it.

Sam

Feeling good….

Since I know you don’t want to ask….. I’m feeling great right now. The steroid is helping as I’ve been pain free for over a week and have skated a couple times. I emailed my health advocate earlier this week to make sure it was okay to play hockey and she gave me the thumbs up. I was scheduled to play in a men’s league tourney July 21-23 and gave my spot up a while back. Turns out one of the guys now can’t make it so I’m back on the roster!

As advertised, the steroid have me hungry all the time and I’m sure any weight I dropped last month is back.  The good thing is I have an appetite.  I’ve asked my advocate if we can schedule time with a nutritionist especially if we’re talking about AIP as there are some trigger food to be avoided. While I already eat a restrictive diet (no beef, pork, shellfish, alcohol….) it doesn’t mean I eat great and I guess there is a need for more protein, less inflammation causing foods and I don’t know what those are. Since I got sick last year, the suggested no more fired foods and I’ve done a good job passing on them although I still like some sweets. Anyway, look to understanding from a dr. The right way to eat as I find the internet suggestions overwhelming and hard to find a place to start.

Still waiting on Blood work details from LA visit and then nothing happening until July 25th appointments. 

Thanks for checking in and more to follow soon. 

Sam

Dr Banks and ERCP

Dr Banks called late Monday and he (and team) believe, it's either a severe case of Chronic Pancreatitis or AIP. He was trending towards AIP and wanted to know how the steroids were doing. He suggested 2 additional tests (including A1C blood test) and asked me to follow up with him after the July 25th appointments to understand what my Dr's are suggesting. He also mentioned, if I want him to continue reviewing my case, I'd need to plan an in person hospital visit.

Also received call yesterday from UCHealth and they scheduled an ERCP for Friday August 11th. This will replace the current stent although, according to what Nissen said, there is a chance it could fall out on it's own.  All of it still revolves around the success of these steroids and possibility we might get an actual diagnosis. It still feels like we're trending further and further from a big surgical procedure.

I'm scheduled to leave for a work trip on August 18th and planning to go....   

LA Dr visits.

I bumped to LA on Wednesday evening and got back to the house late this afternoon.  Recap below...

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 

July 4th, Cali trip and 6 scheduled appointments

Morning and Happy 4th of July! Had 3 amazing days of Dead and Company shows in Boulder with family and friends. Last night ended with Dave Matthews joining the band for the final 4 songs and drones lighting up the sky as a giant Steal Your Face....

Quite a few things have happened since I last posted. I started on the steroid on Wednesday June 28th. While I didnt notice any immediate changes, Jen mentioned I had more energy on Friday and I needed it heading into the long weekend. Also started the antibiotic although that's on a different schedule.

On Wednesday, I also spoke with a friend from work who asked if i'd be interested in talking with Dr. John Kim (in Los Angeles) as they had mentioned my situation and he offered to catch up with me. He ended up calling Wednesday night and we spoke for about 45 minutes. As I had a minute to give a brief Medical history, he brought up a few things that haven't been mentioned by my dr's (question of  lymphoma, maybe the benefit of a "spyglass" if I need another ERCP/EUS and the possibility this is somehow connected to prior testicular cancer). Great guy willing to take a few minutes to talk with a friend of a friend....

While I was talking to Dr. Kim, Hockey buddy (Mike) texted to see how I was doing. He is a Harvard trained MD and ended up calling to hear exactly whats going on. As we're talking, he starts typing out email to Dr. Peter Banks, the Director of Center for Pancreatic Disease and a professor at Harvard.  He asks Dr Banks if he has some time to talk with me and review my case. Dr Banks responds quickly saying he is going out of town and for me to call him Thursday. I give Dr. Banks the high level overview and he says he will connect when he is back in town after the holiday. He calls back late Thursday asking me to send copies of scans/Med records related to the pancreas and have them at his house when he returns. He provides him home address and then says "i've seen this before...." and is the first dr we've talked with who's said that. To this point, everyone else has been stumped saying they dont know exactly what's going on. As you can imagine, some excitement hearing that as well as him saying it was good Dr. Ed got me on the steroids.

And finally, late last year, through a family friend, I was introduced to Dr. Nicolas Nissen from Cedars Sinai. He reviewed my scans and provided some feedback on the lesion. The same family friend suggested I visit with Nissen and Dr Davis Berz asap for a "2nd" (or maybe 3rd or 4th) opinion. As you know we've already postponed the initial Whipple, the time is right and i'm headed to LA Wednesday night for some appointments on Thursday and Friday. I went to UC health last week and got copies of scans/records and have them ready to share with Dr's in LA. While I dont know if they're thoughts will be consistent with the UC Health med team, something needs to happen soon as UC health called yesterday...

Received a call from Cheryl Meguid. She is part of the pancreatic team and the multidisciplinary board and I think my healthcare advocate. Last December, just before Christmas, we met Cheryl at the appointment where I was asked to make the decision if I wanted to schedule the Whipple right after New Years and we've not seen her since. So, she calls and follows up on what Dr's had discussed... a month of steroids before another set of scans and Cheryl offers to make the scan appointment on the 25th. She also mentions there will be a multidisciplinary meeting that day and we will schedule time to talk. A bit later I see a couple emails mentioning appointments and check the portal to see whats up:

July 25:

825am - CT Scans

930am - Multidisciplinary appointment with Cheryl

10am - Lab work

1pm - Multidisciplinary appointment (I believe this is when the board meets and wonder if she wants us to attend the actual conversation. At one point Del Chairo said I had the Most discussed Pancreas at UC Health and the possibility of us meeting with the board....)

3pm - Pre-Procedure services....  (I had a Pre procedure meeting a few weeks ago with anesthesiology and wonder what this is about)

So yea, that sounds like a fun day. Before we got off the phone, I mentioned we're speaking with other dr's including the So Cal visit this week. When I spoke with Nissen earlier in the year, neither of the Dr's wanted to talk with each other and both said "have him call me to discuss."  Cheryl supported getting additional opinions and agreed she is the right person to have the outside Dr's contact to discuss my case. Extremely helpful as she can manage and schedule the conversation if there is a need for them to talk.

Lots happening and optimistic these Dr's will agree on the path forward and best options.... whatever they are. We're ready and still want to avoid missing that point of no return (portal Vein thing).

And finally, I feel okay. Could be better and i'm sure it could be a lot worse.

Hope you're holiday is fantastic and thanks for the texts, calls and support.

Sam