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I have been trying to get this update out for weeks now. I have pages and pages of different starts. Different thoughts and feelings. But…. In the end I think I just need to get something to you. Here are just the nuts and bolts. I will start after the last biopsy I got in May. I started doing the Brentuximab drug right away. Which was the drug that got me in remission to start with. I started that on May 10. The treatment went well and no really issues. I had assumed or hoped that this same drug would get me to a remission again. MY plan was to take 3 cycles of the drug then do radiation to the stomach and go from there. I was supposed to do the second cycle on May 31st. I called up to double check the time and it turns out the dr office had forgot to order the drug. I was pretty upset about this. It really messed with the schedule at work along with a lot of other things. I ended up doing the treatment on Tuesday June 4th. To break up this little straight to the point update. I did do one very exciting and fun thing in between. I went on a private Cataract Canyon trip with several of my close friends including my brother. This also happened to be over my birthday. To add to the excitement I took my 9ft “mini-Me” boat through with my friend Zacharia. The level was pretty big probably around 23000 Cubic Feet Per second. To give you prospective I know several commercial companies pull their 18’ row boats at 15000. We did end up flipping in one of the bigger rapids Big Drop 2 ½ also known as the “claw.” We ended up having to hand paddle to shore RIGHT above the next rapid…Satan’s gut or Big Drop 3. Pretty exciting. The rest of the day we play horseshoes and told stories /lies on the beech. I am pretty sure I have never had a better birthday. I had another Pet Scan on June 25. And then a meeting with Dr. Prystas and then a meeting with the radiation doc. The pet scan showed more active spots of cancer all around my stomach and intestines. The activity was very small. But in a lot of places. Like a shot gun blast. Since the Brentuximab did work this time we did not do another cycle. There was really no plan when I left the dr office that day. Talk of clinical trials or radiation and that the only real “cure” would be another more invasive bone marrow transplant. I met with the radiation doc later that day. He was very young and rather indecisive. He also pushed for the BMT. He was very against radiation to the stomach area in such a large area. Not a very good day overall. I quickly called my mom and we started setting up appointments with the two largest lymphoma hospitals in the country. MD Anderson in Houston and Memorial Sloan Kettering in New York. Along with potential ones in Chicago, Minnesota, and Colorado. We had already received a second opinion from MD Anderson about doing the bone marrow transplants in the first place. This hospital also see’s 28000 lymphoma patients a year. So they have seen more relapses that are similar to me than anyone in SLC and would have better idea of what has worked in the past. We also set up a meeting with the BMT team because I thought it would be a good idea to talk with them again. A Long Week: We were able to set up a meeting with MD right way. These guys were incredible on the phone. Really customer service oriented. Not what you are used to when you deal with hospital. We had a ton of information before we got there. Including the issues with my insurance and such. I flew from SLC to Den to Houston on southwest. My Mom met me at the airport for the flight from DEN to HOU. It was her birthday. I know there is no place she would have rather been but it did make me feel like shit. One hell of a bday present. MD Anderson is like the Disneyland of Cancer hospitals. This place is immaculate. Thousands of volunteers running around serving coffee, helping people on where to go, there was a person playing music in the entrance it had a concierges desk even and an aquarium. Really an incredible facility. Check in was also fast and efficient. I cant say enough about my experience there. We met with the doc for a long time and went over a ton of studies and options. He stressed that my treatment so far was perfect and that I should not blame anything on my treatment so far. He really broke the studies and went into the ones he thought would work best for me. Really the reason why we went there. He also stressed that to get a “full” cure I would have to do a BMT. We flew back to SLC and met with the BMT in LDS hospital the next day. It was very informative also. The dr we met with had strong opinions about all the studies some he really liked and some he really disliked. The whole thing was very informative. It also made me more comfortable to do this BMT. Still not excited about it but… I took a couple of day off for the 4th to head up to park city with friend and relax and not thinking too much, just play. I flew to NYC on Saturday. We decided to go earlier to hang out with family. We had a bunch of BBQ’s and fun while we were there. We met with the dr on Tuesday July 9th. Sloan was nice but nothing like MD Anderson. Very similar to the meeting with MD Anderson. We went over a lot of clinical trials. Unlike MD, Sloan had a lot of open trials going on. He suggested one that was close to finishing up Phase one and almost in phase 2. Which is better for me. It also had one Hodgkin’s patient go into remission from the treatment. (not many Hodgkin’s patients are in studies and they only allow in 3 patients at a time so this is a good sign) I came home on the 11th. Now it is decision time. We still have potential appointments with other hospitals. But I think we are leaning to the Sloan one at this point. I talked to dr. Prystas in SLc and she thought it looked good. Also seems right in line with what most of the others where saying. Another big reason for using Sloan is that it might be able to take my Medicaid. Which seems crazy to me but would be a huge financial relief. Though the drug and direct meetings will be covered by the study. Test and emergencies are not. And the fact that I have tons of cousins around the hospital helps makes moving To NYC vs. Houston a lot easier. Especially if I have to be there for almost 6 months. This journey would be so much harder without the help and uncompromising love of friends and family. First with David Everitt and his family to just give me their SLC condo for the first sets of treatment. Then Dasch who just let me moving into his basement for 6 month even though I had never met his wife Megan up to that point. (and probably more important Meg letting me move in) And now my cousin Marc is letting me move in with almost no notice. It is so so nice to not stress housing and just work on the treatments. So Now I fly back on weds to NYC for an entrance interview, which will be a lot of tests and such. None of which is covered in the study. I will be there for about 9 days. If I qualify I will fly back then load up my car and head out for the time I need to be there. They do not really want me leavening after I start the trial but since my brother is getting married in sept I will have to leave at least once. I have a more…emotional update I am working on but I don’t know when I will finish so there you go. Sorry it took so long. I will try and do another one once I know more details about the trail such as how long I will be there, time between treatments and such.Thank you allArlo
Arlo's Cancer Story | Arlo's Cancer Story
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