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Where do I start?

 

 

“Change is the only constant, whether it’s in music, culture, dance or fashion.” – Sonu Nigam

 

 

First, I’ve missed you guys, although many of us have migrated over to FB and the various groups there that offer us information, hope, and inspiration. 

I’ve felt for some time, as you may recall, that I needed to get back to my blogging. But life has gotten in the way, in a good way, and that’s kind of A-OK with us. So let me try and bring you up to speed on a couple of things quickly. 

Dave is doing great. However, he went out of remission about this time in 2015. It was a slow progression and so back to UAMS in Little Rock we headed. We went back on the Rev/Vel/Dex (low dose now) and it slowed it down but didn’t bring it down. He was stable and still not showing too much in the way of disease symptoms, but enough that we all agreed we needed to get on it. So we switched to Pom/Kyprolis/Dex. Drove his MM into the dirt! However, there was a precursor to heart damage that Arkansas has observed so they pulled us off pronto. From that, we went on Daratumamab (Darzalex)/Pom/Dex. Dave’s heart took longer to recover than expected, so we went to a Cardiologist to make sure it wasn’t something else besides treatment. The cardiologist mentioned that the “mabs” have a heart impact also, so perhaps because we went right onto it, it made it a little harder for Dave’s heart function to recover. Anyway, we all opted to just sit tight on our current treatment last fall, and this January we discovered Dave is in SCR (Stringent Complete Remission), no MRD (Minimal Residual Disease), lesions have resolved, his heart has recovered. He’s been in CR for over a year and no chromosome abnormalities have developed. So all in all, as before, he does respond to treatment opportunities. (The only bad, but expected, news is, his immune system is pretty schnockered! So I check flunearyou.org every week to see if we have any flu outbreaks in our immediate area and we have Tamiflu on hand if there is.)

As you know, Arkansas is one of the more aggressive treatment facilities you can go to. They aren’t aggressive for all patients, but if you are young and otherwise healthy, that is the direction they prefer. So yes, SCT, that’s what they want to do. The difference this time will be that he will get all 200 mg of melphalan instead of having it broken up into several treatments (refracted), which is what he had with the tandem. There were some concerns I heard from my local on doing another transplant and that it wasn’t something there was evidence to support. Dave wasn’t feeling that great at the time and so he wasn’t all the keen on jumping down that path either. So I embarked on some requested research and found very little (as in NONE!). I went to a patient seminar and put the question to the panel and all said if a patient got a good response with the first they would do it again. Dave had two you say? Yes, but I considered it really one treatment as it was the protocol and the second wasn’t given after a relapse setting. That’s just me though. So the upshot was, I couldn’t find any papers or data that supported it or not. Frustrating to be sure. Nothing new there in Myelomaville right? So we had our heart to heart with the doctor in Arkansas and there is some unpublished data that it can be “helpful.”  His experience with patients like Dave is good with this particular path in relapse. His goal is to get Dave off meds for the long haul. That is probably the biggest appeal to Dave. He loved being off everything for the two years. We both did. So I totally understand the lure. And as I’ve always said, it’s Dave’s decision. And per usual in Myelomaville, there are several paths one can take. With all the new drugs that came out in 2016, there are even more things one can consider and try. They are all still trying to sort it out. So per usual, you read or hear about a lot of different cocktails, dosing, theories, etc., and also per usual, not everyone agrees with our decision.

OstrichSo we are off to Little Rock in a couple weeks to begin this process. It’s been a very strange road these last couple of years. When Dave came out of remission, we had a really hard time finding our dance steps again. And lo and behold we had both changed a lot. We were stepping all over each other or not dancing the same dance at all! We had a bit of the ostrich thing going on too! 

 

Angelica & Hudson

On a lighter note, our son Hudson got married two years ago this month. Angelica Contreras. She lives up to her name. We just love her. She is from Colombia and so they had a Court House wedding at the beautiful City Hall in San Francisco. Her Parents came and a couple of siblings and friends. I think we had about 18 for dinner and it was simply lovely. Hudson also started his own tree care service business in the Bay Area and Dave is one of the principals and our daughter Montana does all the bookkeeping and marketing stuff. (She moved here with us from Baltimore, MD almost two years ago, so it’s been wonderful in so many ways.)

Note: There are some amazing FB Groups now for Myeloma. You should definitely consider joining some of them for information. So much has happened at a very organic grass roots level that is fabulous for patients and caregivers. IMF has an International Working Group that meets regularly to discuss the latest data on Myeloma. Myeloma Crowd has regular radio program interviews with researchers hot on the trail for a cure. CureTalks keeps putting out great podcasts. And I discovered in a chance meeting at the San Diego airport after one of the Myeloma Conferences that Vanderbilt has a Oncology Cardiac Team now to help sort out heart issues that happen as a result of treatment. SparksCures is the new clinical trial group just for us! Definitely check them out. Oh and LOTS of peeps on Twitter these days as well. (@PuenteLori)

 

 

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