Hello Everyone from snowy Moab Utah,
This updated was mostly written last week after I meet with Dr. Hoda and the BMT team. I did not want to send it out until I had my PET scan results. Thanks to the incompetence of the Huntsman Caner Institute I have just received those results. The wait and result have turned what was a happy email into a rather turbulent one.
This is an important update and I wanted to put a lot into it. I am having a hard time organizing this one. I want to go over all the past events along with what is going to happen and put a lot of how I feel in this update. Just do not know where to start.
This last little while has been very busy, stressful and fun. I think the next couple of weeks will be the same until it gets real boring and rather…depressing.
My life has been a combination of lots of work and prep for when I am…gone, Mixed with trying to soak up as much LIFE as possible without endangering my “future.”
I think the best way to go is just in a time line:
This update starts off with my pleasure in meeting the son of two of my favorite people Gretchen and Jon Fuller. I got to visit their little boy Bram Fuller 4 days after his birth. I am very excited for these two very important people in my life. And I hope to be around to watch him grow up. It seems like everyone I know is having kids and I really want to see these little ones grow up. Who else is going to teach them all those bad habits, but Uncle Arlo?
I went to the Hospital to meet with my doctor and go over my thoughts on the BMT.
The highlight of my day was not the 4 pokes I got from the Huntsman staff but the Mini Mouse that gave me a cookie and had a mans voice. Pretty awesome.
This week was full of fun including dancing to the boom boom room and sea kayaking on one of the last warm days in Moab.
This was a week of meetings. The weekend started with my sister, Emma, coming over from Colorado Springs. I am training her to hopefully be my assistant but really to replace me at the company. This was a lot of work because I had to rewrite the marketing plan, organize everything I do, and set realistic goals for her.
This was a very hard/stressful process but helpful. Overall this was a very good meeting for her, me and in the end for my father. He is really excited to have her move to town.
I also had meetings with the Moab Travel Council, Utah Guides and Outfitters and a meeting with the SGRE staff over Emma’s integration. This may sound weird but these “mundane” board meetings are important to me and help me stay in the here and now.
This all ended with a meeting with Dr. Halwani on Thursday Nov 14th. Dr. H. told me that a date had officially been set by the LDS staff of Dec 18th to begin the Allo Transplant. He also thought it was a good idea to do my last PD1 treatment and that would give me 30 days to clear the drug out of my system before the transplant.
Of note is that I started to feel some back pain during this week. Similar to my feeling two years ago when I had my worse scan ever. I noted it to the dr, he was not really to concerned about it so neither was I. (more on this later) I know I am leaving tons of cliff hangers.
We also set up a Nov 21st PET/CT scan. More on this later.
I ended this week by flying to Las Vegas and meeting with my friends for a wild weekend in Las Vegas. I had a lot of fun even if I did not win a single sports bet. (That could change if Germany wins the World Cup) (another cliff hanger?)
Nov 18- 25
This was a week of tests. I stayed in SLC for blood tests (about 17 vials of blood) and a bone marrow biopsy. Of note the LDS staff only had to poke me once to get blood. Thought the Bone marrow biopsy was a little rougher than the last two times. The PA had a little trouble “chipping” some of the bone for the biopsy. This procedure is really not as bad as it sounds, it is just…awkward . The drilling and pounding in your back is something that is just not right.
Then I drove home to stay in my bed for just two nights before coming back to SLC.
I went back to SLC on Weds Nov 20 to meet with Dr. Hoda and the BMT team and then I did a PET/CT scan at the huntsman on Nov 21. I am going to go over the PET/CT first.
The drug company required that I have a finally PET/CT scan at the end of the trial and that I do it at the Huntsman. I had to do some rearranging so I would not have to do one at IMC and one at Huntsman. Finally I was able to talk the LDS team into taking the Huntsman scan, which is also nice because the drug company will pay for this one. (the test is 10K by the way and I have done 21 or so now.)
So back to the official consult with dr. Hoda and the BMT entrance. Dr. Hoda was the only one I wanted to talk to about the BMT even though there are 6 doctors on the BMT team at LDS. (I would have been ok to meet with Dr. Asch also) But Dr. Hoda is the doctor every cancer patient wants.
Dr. Hoda is one of my favorite doctors. He is no bullshit, straightforward but nice, a little cocky (which I love) and really really smart. Not just with a ton of knowledge in his head but he has the ability to take it out of clinical and doctor speak and break it down for you in a way you can understand.
Dr. Hoda got me in the PD1 trial, personally calling Dr. Halwani. He called me in Oct from his vacation to stress how important he thought it was that I go STRAIGHT to transplant even with the PD1 working so well. He was also the doctor who had to talk to me about doing open heart surgery just to get to the transplant oh so long ago.
This all to say that I have TREMENDOUS respect and admiration for Dr. Hoda. I think, NO… I KNOW if I live through this, my life is squarely on his shoulders. I know he saves lives everyday but I feel he has gone above and beyond for me and my family.
This meeting was slightly a formality since have been in contact with LDS since 2011. We have had several meetings about doing an ALLO transplant with Dr. Hoda before this meeting. I went with My Mom, for what was still a rather important meeting in my head.
Because the past week has been crazy, I am not going to spend too much time on the details of this meeting. Which is funny cause I thought this entire update was going to be about this meeting. We did talk about long-term side effect and such. I will stress two things from this meeting.
I really need help finding a place in SLC after the treatment. They want me to stay in SLC for at least 120 days. I have a huge issue asking for help. Which makes me delay in asking for help until it is way more inconvenient. Which happened last time with Dasch. And I was incredible lucky that worked out so well.
SO I do need a place to stay in SLC after the treatment that can accommodate a sick me. So anyone that wants to help me out here I would be much appreciated. I have not really thought too much about this because I think it will just work itself out. I also just do not want to stress about it or ask others to inconvenience themselves for me. I have had a couple people offer and I may take them up put I REALLY REALLY do not want to burden anyone. (one of my biggest fears in life is being a burden. Might even be a phobia.)
Surprising meeting Stats
The second part of the meeting was on how I will recover and new information on that. Dr. Hoda really made it seem like I should not have problems with the whole process. He said “I hope to have to you back in Moab by the summer and back on the river in a year.”
Wow, That was not how I expected that to go.
Top Secret Charts
Next, Dr. Hoda pulled out a chart that had been given to the BMT team at a recent conference on transplants. The chart was of Hodgkin’s patients all doing allo transplants; broken into 4 groups: Full match non-related donor, full match related donor, half match unrelated donor, half match related donor.
So right in line with what I am doing. (I am a half match related donor) There will be a test so keep notes.
The first graph was called “progression free survival.” Yeah that is not a scary/cold way of putting it. The graph had percentages on one side and time on the other. The graph showed for the first 1000 days 85% of half matched related patients survived. (for those not paying attention that is the boat I am in.) This was by far the best, and most the death were within the first 100-300 days.
Interestingly the graph showed full match unrelated as the worse and down around 50%.
The second graph showed the same four groups but how many had developed graph versus host (GVH) disease. Now you would think that a half match would have high GVH and a high success of taking out the cancer right? Well that is not what this graph show. Only 10% of those doing a half match related got GVH! in 1000 day period. The other three groups show much worse in both categories.
Here the catch: First this is an unpublished study and Dr. Hoda would not let me take the chart. (Maybe I am not even supposed to put this out there) Next there are VERY few who have done half matches…EVER! I think the number was 50ish. That is also why it only went to 1000 days. (the other Full Match lines did go to 10000 days.)
Could have been the first Half Match at LDS:
Side story, When I finished my auto BMT and went in for my 100 day review, I had already started on Brentuximab and was feeling much better. At that time Dr. Asch told me that I should still do an ALLO transplant even if I went into a complete remission on Brentuximab. I thought that was strange at the time but she was obviously right. But the story is that at that time she mentioned that if I decided to do the ALLO transplant they would like to do a half match. Which meant I would be the first to do a half match at LDS hospital and the first in the State of Utah. Something that was not mentioned at the time.
Now 2 years later they have done a total of 10 or so. Of which most have done well and some that have done REALLY well.
DOUBLE WOW! Great News!
Mom and I left the hospital on a complete high. 85% is better than the 50% I was working on for the double auto transplant so long ago. And 10% on the GVH? Love those numbers. (even with a really small sample set) Maybe things have finally come around for me?
Of course I think of what Dr. Ptystas told me at the VERY VERY beginning. Statics really do not matter to me. Either it works 100% for me or 0%. And that is all I that matters. BUT I like when the odds finally start working in my favor.
If you like happy ends stop reading now.
Not so great Huntsman
I have held off on finishing this update because I really wanted to see the PET scan results. I have been having back trouble on the left side of my back in the middle. This reminded me of that terrible time when I could not get out of bed and my back was killing me and it turned out to be cancerous lesions on my ribs, spin and such. I told both Dr. Hoda and Halwani about it and they did not think to much of it.
Now to the Huntsman.
I had the PET scan on Thursday morning. 7am.
At the IMC I have tests at 9-12 and meet with the dr. in the afternoon. By 2pm I can check online and see my results almost always. I love being able to read my results online this allows me to compare to my previous results and gives me a visual of what is going on. It is really nice and comforting. This also allows me to formulate intelligent and important questions for the doctor.
Ok, so the Huntsman does not have this feature. I think this is complete BULLSHIT.
You have marble covered floors, redwood panels, free headphones at check in and more money than you know what to do with and you cannot upload reports online for your patients? UNACCEPTABLE!
So this leaves me at the mercy of the Huntsman staff which I have already explained is terrible. The communication is a joke. I have had SO many problems with this. My coordinator at LDS is having trouble getting my file and reports from them. The PA that did my updated history at LDS was very frustrated that she could not get ANYTHING from the Huntsman. That means they have to go off what I tell them was my test results and when from my memory only. That is just ridiculous, this could honestly put peoples lives in danger.
On Friday Nov 22 I called the Huntsman to get my results. I left a message for my study coordinator to email me or call me with the PET scan results. I also emailed her.
I received a message Friday evening from a nurse and she ran through all my labs. Nothing about my PET scan. LABS? Do you really think I am going to call about how my labs are doing? I guess some people do have those needs. But I did tell them I was looking for my PET scan results so somewhere in the communication it got lost. For the weekend I had no PET scan information and my back went from annoying to painful and I started to freak out.
Monday 9am. I email again to get my PET, PET, yes PET scan results. I had some pain pill from the bone marrow biopsy, which helps with the back pain but does not help with my anxiety. I called and left another message.
Tuesday 9am I find my coordinators direct line. I call her get her voicemail. I leave a message.
I call again at 2:30 pm. This time I get her. She looks up my PET scan.
“Everything else looks good though”
“Wow” I thought, could that be right?
She gave me a lot of numbers but it is hard to process the numbers and compare them to previous info.
Basically what I got out of all this was that the 2 main tumors had shrunk even farther from before. Their brightness was 10 SUV or something like that. It meant nothing because I could not remember what they had been before. And that there was a spot on the middle left side of my back that was VERY active at 28.9.
I asked her to email me the report to me so I could look it over and process it. (Probably beating a dead horse but this would have been a lot easier online) She told me she would have to print it out, scan it then send it to me. Again, WTF, you can not just send me the report right off? Print, scan, email? Might as well send smoke signals or pony express to Moab.
What does it mean?
I did not know what all of this meant. Would I have to change the BMT date? Could I even do the BMT? Do more chemo? How large and active are the tumors? Do I need to do a new study? Can I get in earlier? Really wanted to read the report and try and figure out what it all meant.
I call my mom right away. She was obviously very upset and confused also.
I called Cindy the coordinator at LDS next. I wanted to let LDS know the issue. I think everyone has been working on the idea that I had no active disease. Or at least I was working on that idea.
Cindy let me know that Dr. Hoda and Dr. Halwani had been talking and still thought it was a good idea to move forward. This made me feel better that Dr. Hoda had seen the report. Though I was a little upset that no one thought to call me, the person with the cancer and painful back lesions?
5:30pm Tuesday Nov 26. I still had not gotten the report from Huntsman. I called again to make sure I had not been forgot. I really did not want to keep putting this update off and I did not want to send this out without reading the report for myself.
The coordinator answered the phone and said she had the report in the scanner and was going to send it in an hour. UGH. I asked her something the PET scan tech had mentioned off hand, about having a test on Dec 4tth. The coordinator replied that she would have to check on that. When she got back to me it was to no ones surprise that I had been scheduled for a CT scan at the Huntsman for Dec 4 at 6 pm.
Here I go again. If I had been informed of this test I could have picked up the needed contrast when I had my PET scan. This all means I have to go up on Dec 4th when I had not planned on it. And I will have to be there 2 hours earlier then I want or really need to be. I get to drive to the Huntsman and pick up the contrast then sit there for 2 Hours for a test that will take 15 minutes.
I AM NOT HAPPY WITH THE HUNTSMAN.
OK I will try and leave the huntsman alone for the rest of this ridiculously long update. I am pretty pissed off in case you cannot tell.
And my new situation does not make me friendlier. I feel bad for my family this weekend. I hope I can relax and just enjoy the moment and life and such.
But to be honest I am really really upset and feeling let down.
It is no ones fault but I am confused, lost and…
Shit looked so good last week. I was so excited about “the chart” and the really thought I was going to crush this and move on.
Now I am as discouraged as I have ever been.
Wow, that is a terrible way to end an update and send out right before thanksgiving.
You know though. I still believe I will make it through this.
Thank you all.