I wish you all a terrific new year and hope it will be a great one for you and yours!
I also feel I should update everyone on my visit to Huntsman Cancer Institute in November. I've never been to Huntsman, so this was a new experience. We met with Dr. Atanakovic who is the Director of the Myeloma Clinic. This was really nice because that clinic sees over 800 patients (almost 900) all of whom have Multiple Myeloma. So, even my local oncologist who does see Myeloma patients does not see that many -- he mostly deals with leukemias and other types of blood and other cancers. So this was a chance to hear from someone who is immersed in just my cancer.
I will say that Huntsman is beautiful -- although I am sure it was very expensive to build, going into that setting is somewhat relaxing. To see a clinic with people wearing masks, and to see bathrooms where they have wipes next to the door handles really made me feel that the anxieties I live with every day are understood. The Dr. and his PA were both really up on my chart, asked many questions, and reviewed my prior results.
He said a few things that were interesting. Regarding my prior test results, he basically told me that I had an "atypical form of myeloma". He said that my results were quite surprising to him -- when myeloma comes back, it usually is quite aggressive, but he was impressed that I had been stable for so long. He thought that it even looked a bit like the disease had "regressed" back to what they call smoldering myeloma. In our discussion, he noted that it was possible that I could remain stable if this pattern continued, possibly for years. He said there was no need for any additional treatments at this time -- whew! -- and that I should keep doing that I have been doing.
He was concerned about my shortness of breath, skin vitiligo, unusual liver function scores, and other issues. He wanted to run some more tests. Then he set up a follow-up appointment, and he and his PA left. They came back in, like, five minutes! He said that they had been discussing my case as they left and, his PA said something that really caught his attention. In my original MRI skeletal scans, they had noted that one of my lesions/damaged bone areas was a lytic lesion. He said this was unusual -- usually myeloma creates holes in bones, but a lytic lesion is like scar tissue on the bone. This linked to a possible situation that could explain many of my symptoms -- a syndrome called POEMS. This is a quite rare condition, so he didn't think it was highly likely (1 in 1 million), but he thought we should check on it.
The other thing he said that Patricia really found liberating was that since my M-spike (myeloma protein spike in my blood) was 0.3 when I went in for my Stem Cell Transplant, he would not have done the transplant. He said if the spike, the abnormal proteins, are not 0 at the start of transplant, he believes the transplant does not work. Of course, this was born out by the return of my myeloma very shortly after my transplant, although it did stabilize. She asked him to make sure to share this type of information is shared with LDS Hospital so that other patients would not have to go through what we did.
(Now to the title tie-in)......So, that was then. So what is going on now? Wazzup?Before we left SLC, we got blood drawn (lots of blood drawn) and got a chance to visit with my Aunt. I went back in December for lots of fun including them drilling a hole into my left hip for a bone marrow biopsy and more blood tests as well as the always popular "orange jug" 24-hour urine sample which I got to carry around with me for a while. It has been a while since I had a biopsy, and it made me remember why I don't really like to do it. That was almost two weeks ago, and I am still a bit stiff, but at least the itching and pain have gone down.
I have another meeting with Dr. A next week, so he will give me all the results, and we'll discuss them. I also have another bone scan in January, so I'll have that data when I meet with Dr. Wallentine locally again. From what I can tell (spoiler alert!): I am not showing abnormal levels yet of elevated free chains (which are the molecules that damage my kidneys); the POEMS results also came back, and I do not have that condition -- which still leaves questions about why I have so many things going wrong at the same time. I've got Questions! ???????? Here's the bad news: Remember that my M-spike has been stable around 0.6 - 0.7 for more than 2 years now. It bumped up occasionally to 0.8 and then would drop back down the next month. Well, my November reading was 0.91 and my December reading was 1.03; I'm hoping this is due mostly to different labs? But we'll talk about that. It may mean that the myeloma is NOT going to be stable for years and may be coming back.....if it goes up by .10 every month or so, we probably would start talking about chemotherapy again. Arrrgh. We'll see what Dr. A says, though, in light of ALL the test results, before I get too anxious, but it would explain my slight increase in fatigue (I'm sleeping better though as a result......). My white blood counts in December also dropped quite a bit; they had been just below normal, and this last time were a fair amount lower. I've also lost about 3 pounds in the past month, although I am cutting back after the holidays!
So, that is the latest. Hate to end the year on a bit of a low note, but I am still kicking and will still be here in 2018 -- we are planning a trip to see Wesley's graduation at the end of April, and then on to NYC where we will see at least one Broadway show and other sights. I am looking forward to 2018 and my blood cells will just have to keep up! I'll leave you with these thoughts -- and my best wishes for a wonderful new year!