Technical Remission!!!

I’m excited to say that Brian is technically considered in REMISSION!!! Woo hoo!!!

Let me get you up to speed. A few weeks ago Brian completed his last (4th) round of his current chemotherapy called GN (the normal cocktail is GND but Brian has had his limit of Doxil-the “D” in the name). Our PET scan was scheduled for last Thursday, his results appointment was scheduled for the next day and a DLI treatment was scheduled for today where his sister would donate some of her lymphocytes. With everything lined up, the process would be a domino effect if anything changed.

Enter last Thursday’s snowstorm. With the snow coming down at a rate of 3 inches per hour, people were getting their cars stuck everywhere. There were literally cars stuck everywhere on the interstates. The news channels were telling people to not drive anywhere. But us? Well we had a PET scan scheduled at KU Med downtown…30 miles away…and Brian was determined to make it. I wasn’t so convinced. I finally asked him to call his mom to ask her what she thought. Thankfully his parents offered to take us in their 4-wheel drive truck all the way down there. It was a crazy adventure, for sure!

Friday was much better and we were able to get down to the appointment easily. We also took Hannah and her boyfriend, Eric, to the appointment so Hannah could fill out some consent forms for the DLI process. The doctor (our favorite one) came in and read the report…the one lymph node that showed activity from the previous scan was even smaller!! Brian, knowing many medical assessments because of his 6 years of experience, knew that the size and activity levels were small enough to be considered “in remission.” He asked the doctor and he confirmed…yes, doctors would technically deem this remission. Oddly enough, it does not necessarily mean Brian is cancer-free…which seems weird to me. A PET scan will only show metabolically activity, which means things could light up if there were other types of inflammation. But this one lymph node that “lit up” was within the normal ranges, which is why they consider it remission. Seriously, this is THE BEST news that we have gotten since I have known Brian! It is also the smallest it has been since we have been together! I can finally say that I am married to a guy who is in technical remission!! Woo hoo! Thank you, Jesus! I consider this a miracle.

Today we are at the hospital for a Donor Lymphocyte Infusion. Brian has done these before. They will collect lymphocytes (a type of white blood cell) for his sister, Hannah, who was his allogeneic stem cell transplant donor back in 2008. They will collect something like 100 million cells from Hannah. In Brian’s previous DLI, he got those cells over 3 separate appointments, just to make sure he didn’t flare up with graft vs host disease (GVHD). GVHD is where Hannah’s Cells attack Brian’s body…you want enough that it will attack the cancer, but not too much that it starts attacking his whole body. Brian didn’t produce any GVHD from the last DLI. Another reason we chose to do this is that it will hopefully boost Brian’s immune system to keep cancer at bay. This time will be different than the last DLI because Brian will get all 100 million cells at once.This is a riskier treatment, but we are hoping that it will produce slight GVHD to fight the remaining inflammation/cancer in Brian’s body and keep his immune system fighting.

So far today, Hannah has had a line surgically installed into a vein in her neck, and she is now hooked up to a machine that will pull out her blood, spin out the lymphocytes and put the remaining blood back into her body. Crazy, huh? Brian is currently at the KU Cancer Center for the doctors to look over him and make sure everything looks good on his end. I am sitting with Hannah and her boyfriend, Eric, while she sleeps and gets the cells harvested. She will be on he machine for 4 hours…probably until around 1 p.m. Then, Brian will get settled into another room on a different floor where they will get his port accessed and they will inject the cells I to his body. He will likely have to wait for a few hours to be observed before we leave. They don’t expect to see any immediate issues or GVHD. It would start showing up in about a month, if he does get it.

All in all, this will be a very long day. We were at he hospital at 7 a.m. and will probably be here until 5 p.m. (That is just a guess). Keep us in your prayers today and this weekend as Hannah recovers and Brian and I head up to Iowa for the weekend. Also pray that this treatment works, but does not produce an unhealthy amount of GVHD.

After this treatment, the doctor briefly mentioned we may start a drug called Interferion in the future, which is also supposed to boost Brian’s immune system and get it agitated enough to fight off cancer.

That’s all I know, so I guess I’ll just end now. 🙂

PS…be impressed…I typed this entire blog on my Ipad with just the on screen keyboard. 🙂

Good news!

On Monday, December 17, we went into the doctor’s office anxious to hear the results of Brian’s latest PET scan. We got all settled and our favorite doctor, Dr. Abyankar, came in with the highly anticipated papers in his hands. Then he began to explain it….. “It shows that all but one spot have completely responded” He handed us the papers. The PET scan results normally reads something like “This spot measures 8.90 compared to previous scan of 7.34. That spot measures 3.54 compared to previous scan of 2.34. This spot measures 5.54 compared to previous scan of 4.54.” …or something to that effect. This time, it read something like…”This spot has had a complete response compared to previous scan of 10.34. That spot has had a complete response compared to previous scan of 8.39.” There was only ONE spot that was still there….and it had shunk from an SUV of 10 something to 2 something!!!! What does this mean??…..

Drum roll please….

Brian is in NEAR REMISSION! He only has ONE spot right now that “lights up!!!!!!!”

Praise GOD!!!!!! Oh it is such good news!

We know that the chances of it returning are good, but we are celebrating this moment and truly taking it one step at a time. The doctors would like to continue the chemo for another round or two to get it to complete remission. They also mentioned possibly doing a 4th DLI which we are totally up for. Usually they only do 3 DLI’s, but they are open to letting us do a 4th to see what it may do. Basically it’s getting booster cells from his Bone Marrow Transplant donor (his sister) and hoping that the cells will “boost” his system.

The doctor also told us that he was okay waiting until after the new year (Jan 3) to start back up his chemo, rather than doing his 3rd round over the holidays. Hoorayyyy!!!!!

Just wanted to share that awesome news with you all!!

And as awesome as we think this news is, we can’t help but thinking about the best news of all during this Christmas: That Jesus came to rescue us all and to heal us all of our human sickness, sin, and that because of that good news and great gift, we don’t have to fear death. We have been given eternal life if we just believe.

Now THAT is GREAT news!

WHAT A VERY MERRY CHRISTMAS, INDEED!

Science diagrams, good fungus, wheat-free and PET scans.

Last Monday we had an appointment with the Integrative Medicine (IM) doctor at KU. We were able to gain a lot of information and some action steps to possibly assist Brian’s body in fighting this cancer. The IM clinic is similar to a holistic doctor. None of the appointments, tests, treatments or supplements are covered by insurance, similar to a holistic doctor. I guess insurance just likes to pay for toxic chemicals, rather than healthy eating practices. The IM clinic isn’t designed to necessarily be “curative” for whatever disease or disorder you’re seeing them for, but it is a way to make sure that your body is working as “efficiently” as possible in order for your body (the best fighter against any disease) to be at its “best.”

Prior to the appointment, Brian had to do blood tests and send off different urine and stool samples. (Let’s just say that I may not ever eat chicken strips out of a white/red striped paper basket anymore, because that’s what was given to be the “collector.” Nasty.) When we went to Monday’s appointment, they had the test results back and we were able to talk through these things. One thing we discussed was the way Brian’s body was processing the food that he is eating. It’s quite interesting, but they can test to make sure you are able to pull out the nutrients you need and are able to use your calories the most effectively to help with energy levels and also to help get the right nutrients and get rid of the toxins. There are different vitamins and minerals that help this whole metabolic process work, so the tests were to find places that may be “bogged down” and help get those parts of the cycle working right again with the right supplements. Sounds confusing? It is. This is similar to the diagram he showed us:

KrebsCycle

 

 

Let’s just say, half the time I had no idea what the doctor was talking about. Thankfully, my science-minded husband studied this stuff in college so he understood it perfectly. When put into simple terms, it makes a lot of sense. If your body isn’t processing your foods efficiently, or your metabolic cycle is off whack, then your body isn’t at it’s “tip top shape” to be fighting diseases. The goal is to get Brian’s metabolism back to the proper place, since right now it is trying to use a less-efficient process because of all that his body has gone through. The doctor gave us a whole packet of supplements to order…B-complex, liquid vitamin D, more vitamin C, magnesium, pro-biotics (I call it good fungus), and a whole list of other things. One reason you saw me ask on Facebook about coconut water kefir grains to start growing our own good fungal bacteria probiotics for much cheaper.

One of the biggest things we found out, after looking at results from a food-sensitivity test was that Brian is sensitive to wheat. His wheat “sensitivity” number was  34, compared to 2-10 range of other foods. So, this means that we are now trying to shift our diet to exclude wheat. The doctor didn’t specifically mention gluten, so we are primarily just focusing on avoiding products with wheat. It is a little easier than avoiding gluten, but it is still amazing the things that wheat is in. We are doing our best to remove as much as possible, but we are not worrying about the traces of wheat found in some things (like frozen turkey meatballs, etc) and he still has occasional Christmas goodies. Brian didn’t necessarily have horrible side effects of eating wheat, in fact we had no idea he was sensitive to it before the test, but since his body is reacting to it with inflammation (shown on the test levels), the thought is that by removing the sensitive items that it will give his immune system one less thing to deal with. Hopefully this means it will give his immune system a lighter load so that it can give more focus to fighting the cancer. Brian has mentioned that his side hasn’t hurt since we removed wheat from his diet last week, so that may have been a side effect that we just assumed was related to the chemo or cancer. It will definitely be a challenge to shift our diet (since you’re always told to eat whole wheat things!), but I don’t think it will be a huge deal. We’ll just be eating a lot more lean meat and veggies. We did go to the health food section at HyVee yesterday to look for some items to replace the regular items we ate that do have wheat (bread, pasta, pizza crust, baked goodies), and that was a bit overwhelming because it was all SO expensive!!

Why is living healthy and going to pro-active healthy doctors SO EXPENSIVE and not covered by insurance!?! No wonder our country is so unhealthy!!!

Anyways, Friday Brian had his PET scan, so we will be going in today at 3 p.m. to get his results. Definitely a little anxious to see what this afternoon holds for us. We’d absolutely appreciate your prayers. I’ll update on Facebook as soon as we hear something, and will update on the blog when I get time.