J and I arrived at NIH bright and early for day one of appointments and tests. We were in building 10, the NIH Clinical Center, which is HUGE.
According to my appointment letter, I was supposed to meet a research nurse at the admissions desk in the Hatfield Building. When I got there I had to do a bunch of admissions paperwork, get my picture taken, etc. etc. etc.
I met with the research nurse and the first thing she said to me was, “Hi, it’s so nice to meet you. I’m sure you already know this but we’re really interested in you because of your age and we’re so glad you’re here.”
We chatted for a little while and she had me sign a consent form entitled, “Eligibility Screening and Tissue Procurement for the National Cancer Institute (NCI) Center for Cancer Research (CCR) and Clinical Research Protocols.”
Now that’s a mouthful.
The research nurse showed J and me where phlebotomy and radiology was located, and where we could get our ID badges. Having the ID badges would make entrance into NIH a little quicker in the future – if you have a badge you don’t have to go through the metal detector at the security check point every time you are trying to enter the campus. Anyway, the plan was to get blood work, then a skeletal survey, then head up to the 12th floor clinic for an appointment. No EKG! I was kind of disappointed to be honest. One test I’ve never had before!
So I got my blood draw. I counted 15+ vials! I think that might be a record for me. I also had to give a urine sample. Good times.
After blood work I had to have the skeletal survey. The wait was REALLY long (as I had to wait for a result of a negative pregnancy test – heh) and I was worried I was going to miss my appointment in the clinic. The receptionist called a few times and the doctors did want me to get the skeletal survey prior to going to the appointment. So I waited. And waited. And waited. As you’ll read later, it’s a good thing I had the skeletal survey.
The x-ray tech guy said that obtaining all the images could take up to an hour. I don’t remember my skeletal survey in 2009 taking that long. Mildly panicked, I told him I was concerned I was already almost TWO hours late for my appointment and he said he would move as quickly as he could. I had to wear a paper shirt and pants that were about 10 sizes too big and get into all these crazy positions, standing and laying. The x-ray guy kept saying things like, “Hmmm where are your knees in there?” and moving me all around. His hair was longer than mine and he had it in a very blond pony tail.
After the skeletal survey we headed up to the clinic for my appointment. I had my vital signs taken pretty quickly. The nurse seemed shocked with my diagnosis and kept saying “Hmmmmm” and looked at me all concerned as I gave my history. Vital signs were fine, she took my temperature in my ear (it was NORMAL – take that fevers!) and brought J and I into a room.
A few minutes later the research fellow came in. Great news, all my blood work from earlier in the day was NORMAL. No flags at all. At least that is what he told me – he said he barely ever sees no flags. Yup. That’s right. Perfect blood work. My IgG that had been climbing over the last couple months (it was 1520 last month) was down to 1340. So that was good. AND. My hemoglobin was 13.2! Whoa! It hasn’t been that high in years (it was 11.3-11.8 last month).
So, research fellow asked my history, did a physical exam, and then asked me if I had any questions.
Uh, of course I did. I think he was amused at the amount and extent of questions that I did have. He was very nice and let me ask tons and tons of questions. Some of them, in particular ones that were related to treatment options he responded with, “You’re not there yet.” Heh. This is true. But. Still need to be prepared. When I asked about pregnancy he said there are only about 20 case studies AT ALL, EVER, in regards to MGUS/SMM/MM and pregnancy. This I knew.
This research fellow also commented on how I am considered young for the disease, but he did say there is a boy who is THIRTEEN with symptomatic multiple myeloma who just had a stem cell transplant at NIH. Yikes. Thirteen… :(
DISCLAIMER AS YOU READ ON: I had long conversations with this research fellow, Dr. OL, Dr. MR, and the other doctors. I have several pages of notes that look like this.
Yeah. Really not very organized. I am trying my best from memory and referencing these notes to recall all the information discussed with the myeloma team. Please take everything I am writing with a grain of salt as it may not be entirely accurate! Really need to get a voice recorder for appointments like these. :)
This research fellow talked about the Natural History Study and the clinical trial they have for patients with high-risk SMM. He also spoke about the differing risk stratification models (Mayo vs. Spanish) and how there is such a discrepancy between the two. This article, Mayo, PETHEMA, And The Risk Of Progression In Smoldering Myeloma: More Disagreement Than Agreement explains this much better than I ever could. The research fellow said some patients are not willing to “watch and wait” and the NIH has this trial, Carfilzomib, Lenalidomide, and Dexamethasone for Smoldering Multiple Myeloma to see if early treatment will improve outcome for these high risk smoldering myeloma patients. These researchers believe that this treatment protocol may improve survival for these high risk patients. He said that everyone with myeloma has an altered gene sequence – the cells start to accumulate these mutations over time, the damage is irreversible, and chemo won’t kill the cells because the mutations will keep coming back. They are hypothesizing that coming at these cells early with treatment may improve survival.
Well. Honestly, this may or may not be exactly what he said. You’ve seen my notes. They make no sense. Remember my disclaimer? God help me.
I asked why all MGUS patients don’t get a bone marrow biopsy. I didn’t have one when I was first diagnosed and having had one in July has been a total game changer for me. I know according to the various support groups that I am a member of that many other MGUS patients have not had one as well. He said, like I’ve heard from other sources, that it is personal preference of the physician and not everyone is screened with a biopsy. It’s really “hit or miss”. The m-protein is really an indirect measurement of the plasma cells – some plasma cells secrete a lot and some only a little (like me). All MGUS and SMM patients that go to NIH get a bone marrow biopsy.
After I asked many, many questions the research fellow left the room and then returned with Dr. OL, Dr. MR, and four other research fellows and/or doctors. I’m not really sure who they all were. It was kind of lot of people. Seven total including the research nurse. Nine people including J and me – crammed into an appointment room.
The first thing I asked about was pregnancy, which is really my biggest concern at this time. Dr. MR said that no one would really absolutely tell me that I shouldn’t have kids as there is no research that definitively says pregnancy is contraindicated in someone with MGUS or SMM. Dr. OL spoke about a research study he was involved in in Europe where they studied women with all different kinds of cancers and compared women diagnosed with cancer who earlier in life had children and those that did not have children. He said there was no differences in women with cancer who had children and those that did not. They actually had a woman in the Natural History Study who is 35 and recently had a baby and I guess is doing “okay.”
One thing that did suck, for lack of a better word, was that they said I definitely have smoldering myeloma based on my two biopsies of 10-15% and 10% plasma cells despite the fact that my m-spike at the time of my biopsies were .34 g/dl and .42 g/dl respectively. The team said they have seen plenty of people, like me, with low m-spikes and 10% or greater plasma cells which meets the definition of smoldering myeloma, not MGUS. The criteria for MGUS is less than 10% plasma cells and monoclonal protein less than 3.0 g/dl. According to these physicians the m-protein really isn’t always a direct measure of the number of plasma cells because some plasma cells secrete a lot of protein and some do not. And some plasma cells don’t secrete AT ALL like in the nonsecretory patients. The number of plasma cells and the features of the plasma cells is what is really important.
Everyone was super nice and we had some good conversations. It was a little awkward having six different doctors staring at me! Dr. OL mentioned my chromosome abnormalities (13, t(11, 14) and 14q32(IGH sep)) and he said really they are just numbers and letters and not to get too bent of shape about them as scientists are not 100% clear what they mean. Obviously, I’m paraphrasing here.
So the appointment was winding down and I was all set to sign on for the Natural History Study. One of the research fellows joked that we would need to bring back New England clam chowder next time we are at the NIH. Everything was all happy-jolly. However, no one had reviewed my skeletal survey. A negative skeletal survey is required in order to sign on to the study.
As Dr. MR continued chatting with me I saw Dr. OL and one of the research fellows start to review my images on the computer in the room. Dr. OL started pointing at one of the images of my arm. They all started staring at the image and whispering together. Dr. MR was still talking and I think trying to distract me while they are reviewing the images.
I could clearly see them pointing to the image of my arm. In my mind I was thinking, what’s wrong with my arm?? What’s wrong with my arm??
J and I were asked to step into the waiting room as they were going to review my skeletal survey before I signed on to the study. After about 10 minutes all six of the doctors came walking out. I assumed they were going to say, “Everything is good to go! Sign here.”
Unfortunately they did not. They walked right past me!
Dr. MR looked back and called to me, “Oh we’re just going to take a look at the images with the radiologist.”
Whaaat? This can’t be good. Something is wrong with my arm.
About 10 more minutes go by and they all come back through the doorway. I again, expect them to say, “Everything is good to go! Sign here.” Unfortunately, they asked me to go back into a room. This can’t be good.
I start having flashbacks to when I was supposed to get a call from Dr. R saying, “Plasma cells are below 5% – good to go!” and instead I had to go back to Dana-Farber to discuss the results of my bone marrow biopsy.
We got into the appointment room and Dr. MR said that apparently there is an abnormal area on the image of my upper left arm.
I joke, “Are you sure it’s not just my bulging bicep?”
Heh, it’s not.
Dr. MR said it could be nothing, or it could be something – possibly a lytic lesion. Dr. OL said he wanted me to have either a full PET/CT tomorrow or at least a CT of my arm as this area needs to be investigated further. At this point it was after 5:30PM and they had no way to find out what the availablity would be for the next day. They apologized that this finding is probably causing me anxiety.
Uh. Yeah. It is.
J and I left. I was freaking out inside. I’ve heard skeletal surveys are worthless because they don’t really show anything. How could the skeletal survey possibly show an abnormality on my arm? How could a lytic lesion form just 6 months after an entirely negative PET/CT?
I was also worried about more radiation exposure with the PET/CT or CT after already having had a PET/CT in August and then the skeletal survey as well.
When we got back to our hotel I emailed Dr. R to get his opinion of the situation. He suggested just the CT of my arm since the recent PET/CT was negative. I also emailed the NIH team. Dr. OL responded with this:
Thanks for kind email.
You are asking important questions. Here are my answers:
1. Changes in bone (and other tissues/organs) can theoretically develop during short periods of time. That is the reason we want to check and make sure we are not missing anything. We are always very careful.
2. Radiation exposure is always something we consider in our daily decision making. Here are some facts: to do a skeletal survey is approx. 1 REM. To do a whole-body PET/CT is approx. 2 REM. To do a standard CT of the chest area (incl the arm) is approx. 2 REM. The reason the whole-body PET/CT and the chest CT are both 2 REM (despite whole-body vs part of the body) is because the whole-body PET/CT is a lower exposure method. CT is a better methods to assess bone than MRI. MRI is better to assess soft tissue (such as bone marrow). Bottom line: I suggest either PET/CT (whole-body), or, alt #2, a CT of the arm (if the PET/CT waiting line is too long).
Tomorrow, we will have it all sorted out. I am sorry for all anxiety due to this. I think a careful work-up is the only way to move forward from here.
You know that song, “Mo money, Mo problems” by the the Notorious B.I.G.?
Well, my theme song at that moment was, “Mo DOCTORS, Mo PROBLEMS”.
Yup. It was a very long night.