This myeloma blog is place for me to share information with my family, friends, and other individuals affected by the disease. My hope is that by sharing my experiences I might also help and connect with other patients.
When my initial m-spike was found I had a skeletal survey (full body x-rays) to check my bones. I actually just found the CD with all the images - skull, spine, pelvis, ribs, arms, legs etc. all from different angles. Kind of crazy to look at. The skeletal survey was obviously painless, just like any regular x-ray except they took a ton of pictures. It took a some time to get in all the right positions for each of the images, however. My bones were fine. I had this skeletal survey back when I was initially diagnosed in September of 2009 and I haven't had one since.
When I started seeing Dr. R in November of 2009 he had me get a PET/CT scan (positron emission tomography/computerized tomography). A PET/CT helps doctors see how the tissues and organs of the body are functioning. After my biopsy results this past July I had another PET/CT scan. Dr. R wanted me to have these scans to rule out lymphoma and to check my organs/tissues. Both of my scans were entirely negative.
The PET/CT is painless, but long. In preparation for the scan I couldn't drink or each anything except for plain water within 6 hours of the scan. Both my PETs were scheduled in the morning so I couldn't eat anything when I woke up. I was pretty starving but it's not like I was going to get up at 3AM to eat a snack. Intense physical activity like running, weight lifting, yoga, and massages need to be avoided 24 hours before the scan. Before the scan I had a quick blood test to check my blood glucose level. Then I was injected with a radioactive tracer and had to rest quietly in a private room for one hour. Family and friends can't be in the private room because obviously you will talk and doctors have found that the tracer collects in your throat and doesn't get evenly distributed throughout the body like it should. During this hour waiting period my first scan I read and the second scan I watched TV. Boring, uneventful. After the hour of waiting for the radioactive tracer to distribute, I was asked use the bathroom to empty my bladder before the scan.
For the scan itself you lay down (you don't have to change into a gown, but you have to make sure you aren't wearing any jewelry or have metal on your clothing) and they sort of wrap your arms down to your body and put a band around your feet so you won't move. The scan is slow - you are moved a little bit and then stop for a few minutes. I didn't feel too claustrophobic because most of the time part of my body is outside the tube. It's very quiet except machine makes a noise when you are moved along and there is a very slight whirring noise at one end of the tube. My arms, hands, and feet fell asleep during my second scan and I couldn't wait to wiggle them. The scan takes about an hour or so but to me it felt like longer.
Overall the PET/CT isn't a huge deal, but like I said, a bit time consuming since it takes a total of two hours (one hour for the tracer, one hour or so for the scan). After the scan I was given a card that said that I had been injected with this radioactive tracer and I had to avoid contact with children and pregnant or potentially pregnant women for 24 hours. Kind of crazy being radioactive.
I have an MRI scheduled for December and have been told the scan lasts about 75 minutes or so. I believe this is to evaluate marrow signal and take a better look at my back. Not entirely sure how an MRI differs from a PET in terms of preparation and procedure. But if you are really enticed and want to learn more MRIs and PET/CTs please read Study Compares MRI And PET-CT Scans For Evaluation Of Multiple Myeloma.
Continuing on with my exciting blog series, Tests I Have Had Since Diagnosis....
Second post: The 24 Hour Urine Collection
Unlike the blood tests with the million acronyms this test is pretty straight forward. Yep. It's exactly what the title states - you literally collect all your pee for 24 hours.
After my initial m-spike was found, the first hematologist I went to told me I had to do a 24 hour urine collection before my next appointment.
I think my response was something along the lines of, "Okay...um...wait, you want me to do what??" I had never heard of such a thing. I had peed into a cup at the doctors' office but never "collected pee" during a 24 hour period of time.
A nurse presented me with a jug...
Now, if you are male this may not seem like a big deal. Begin female.... eh. Difficulties may arise! Luckily, my sister (who is a nurse) was with me at that appointment and she requested a "seat hat" for me to use. A "seat hat" fits over the toilet and makes things a little easier for the ladies...
I have had to do a 24 hour urine collection before all of my appointments at DFCI every 3-6 months over the last 3 years. Not a fun time. The worst part of the test is that the urine must be kept cold. Now, unless you want to keep it "on ice" in a cooler, the jug has to be stored in the refrigerator. YUCK. I have completely grossed out two roommates and now my OCD/germaphobe husband every time I have to collect. Typically, there are a few, "Heyyy, I made some fresh lemonade!" jokes tossed around to lighten things up. I usually try to make my appointments on a Monday so I can collect Sunday morning to Monday morning. The test for the most part causes me to be housebound. I haven't really figured out how I could collect while working... I barely have time to go to the bathroom anyway!
Dana-Farber distributes the orange jugs in a lovely plain brown shopping bag. I've never really understood why the bags they give out are paper - plastic would make a little bit more sense since we are dealing with liquid after all. Anyway. The brown shopping bag can be used to transport the jug (or in my case, jugs...I drink a lot of water) back to the hospital. Occasionally, I'll bring my orange jugs back in a jcrew shopping bag instead to jazz things up a bit. Maybe then people will think I've just been out shopping instead of lugging around my pee...
Here are my most recent results:
09/07/2012 IEP, urine
No monoclonal protein detected. Test Performed or Referred
by: Mayo Clinic Dpt of Lab Med and Pathology, 200 First Street SW, Rochester,
RESULT:(NOTE) Albumin is the only protein detected. See
09/05/2012 GFR (estimated)
>60 Abnormal if < or = 60 mL/min/1.73m2 If patient is
Black, multiply result by 1.21Protein
analysis SEE MEDICAL RECORDS AND/OR BICS09/16/2012
Kappa FLC (mg/L) SEE
MEDICAL RECORDS AND/OR BICS09/16/2012
No monoclonal protein detected. Test Performed [More]09/07/2012
(NOTE) Albumin is the only protein detected.[More]09/07/2012
M Protein, timed ur
See rest of report. Unit: not reported mg/24hrs09/07/2012
Albumin (%), timed
urine 100 %09/07/2012
A1 Globumin (%),
See rest of report. Unit: not reported %09/07/2012
A2 Globulin (%),
See rest of report. Unit: not reported %09/07/2012
B-Globulin (%), timed
See rest of report. Unit: not reported %09/07/2012
G-Globulin (%), timed
See rest of report. Unit: not reported %09/07/2012
A/G Ratio, timed
urine See rest of report.09/07/2012
Total Volume, ur 3700
Total Protein, timed
urine (mg/24hr) 37
Reference range: <102 mg/24 h09/06/2012
urine 24 h09/06/2012
Now to be honest, I'm not entirely sure what most of this means. What I do know is there is no monocolonal protein detected, which is really the point of the test - that is what I focus on!
This is the first in a series of riveting blog posts called:
Tests and Procedures I Have Had Since Diagnosis!
Ooohh....ahhh....I know, you can barely contain your excitement.
First post: the blood test.
Every time I have an appointment with my hem/onc I have to go one hour before for blood work. Blood tests are mostly painless except for the initial poke (or in my case several pokes - crappy veins) of the needle. Many of the results are ready an hour later at my appointment which is convenient. However, the really important tests like the SPEP & IEP (serum protein electrophoresis and immunoelectrophoresis...see, here we go with the acronyms) are not ready for about a week. To be honest, only recently have I really started to understand what all these tests are and what they indicate.
Complete Blood Count (CBC) - tells the number of red blood cells, white blood cells, and platelets; and relative proportion of white blood cells. This test helps determine the degree to which myeloma is interfering with the normal production of blood cells. Low levels may signal anemia, increased risk of infection, and poor clotting.
Chemestry Profile - albumin, calcium, lactate dehydrogenase, blood urea nitrogen (BUN) and creatinine. This test is used to determine general health and check liver and kidney function.
Beta 2 -microglobulin - Determine the level of a serum protein that reflects both disease activity and renal function. High levels indicate more extensive disease.
C-Reactive Protein - Indirect measure of cancer cells. High levels indicate more extensive disease.
Immunoglobulin Levels - Define the levels of antibodies that are overproduced by myeloma cells. Higher levels indicate more extensive disease.
Serum Protein Electrophoresis - indicate the level or presense of proteins, including m-protein
Immunofixation Electrophoresis - identify the type of abdormal antibody protein in the blood
Freelite serum free light chain assay - measure immunoglobulin light chains. Abnormal levels and/or ratio suggest the presence of myeloma or a related disease.
When I log onto my patient portal online I can see most of the test results (except pathology - SPEP, IEP, and biopsies). If you click on a particular test it will show all the results of that particular test from previous dates as well. It's nice to compare to see if the numbers are trending up or down or staying stable.
Here are some of my most recent results. Reference range is to the right. Numbers are flagged as low/high with a (#).
I got this email from the International Myeloma Foundation the other day and it made me chuckle.
The email subject was: World experts debate treatment options!
No disrespect intended - I am sure it will be an excellent conversation/debate. Reason for the chuckle: To me, this picture slightly resembles some sort of advertisement for an international wrestling match, only featuring doctors in suits. Heh.
It's pretty cool for me to have a doctor that is considered a world expert. I feel very lucky. Interestingly though, December 10 is biopsy/MRI day for me at DFCI and it's a good thing I didn't schedule my appointment with Dr. R that day because clearly he is going to be in Atlanta laying the smack down on treatment plans. :)
Faneuil Hall Christmas tree lighting
short work weeks
online support groups
classes at the gym
hot water (we had no hot water)
We are so very blessed. Have a wonderful Thanksgiving - give thanks!
Last night J and I were discussing the ups and downs of life and all the changes we are facing as of late. Possibly moving, my health, job loss...
You read that right. Job loss. I am getting "bumped" at the end of this school year due to budget cuts/restructuring. Yep. When it rains, it pours. Darn you, teachers unions!
At the end of our conversation J sighs and says, "Well, you know what? It's allllll butter..."
He meant to say, "It's alllll gravy..." meaning, it's all good.
Whatever works. ;)
It's allllll buttahhhh, man. Totally starting that trend.
Anyway. I met with the high risk OB for my second "preconception" consultation. Good times. The med student, resident, and the high-risk OB named Dr. G were all very nice. Gotta love teaching hospitals - I really perfected my response to, "So what brings you here...?" by the third round when I finally got to speak with the real doctor. Dr. G has never had a patient with MGUS, smoldering myeloma, or active myeloma. She said that was to be expected though since the majority of myeloma patients are in their 50s or older and are not having babies.
Dr. G has dealt with patients who have gotten cancer before or during pregnancy and she talked a little bit about the protocol for patients with cancer. Pregnancy in itself is a immunosuppressed state and women who are pregnant are more susceptible to a lot of things. For my situation, it would really be a "TEAM" approach between maternal fetal medicine (Dr. G or whoever ends up being my OB) and Dr. R at Dana-Farber. They would work together to monitor me throughout my pregnancy. And, if things were to start to progress during the pregnancy they would work together to determine what medication I could take that would be safe for the baby and how early I could deliver, if needed.
Overall, the appointment was sort of a "nonevent" since a lot of this I already knew. And, of course, she really couldn't pin-point my degree of "risk" since there isn't much research in this area.
And finally, unfortunately, there was no recommendation for J to buy me diamonds like at my previous preconception appointment. Bummer! However, she did say, "If things are stable in December, I wouldn't delay. I hope to see you back here soon." Yippeee.
Approximately one month from today I will be back at DFCI! I have been waiting and waiting and waitingggggg for December 10. Just about one month to go! I feel like I am in the homestretch.
Doesn't this sound like a great day?
9:45 Blood work / drop off 24 hour urine collection
10:45 MRI (I've been told the scan should last about 75 minutes or so)
1:30 Bone marrow biopsy and aspiration (!!!!!!!!!)
2:30 Appointment with a different doctor (my rheumatolgist) over at the BWH
However, really, the MOST important, critical day, will be December 18th - when I actually have my appointment to see Dr. R and I will get all the results - M-spike, urine analysis, MRI, bone marrow. I didn't want to have my appointment with him on December 10th because none of the results would have been finalized and that's obviously what I want to talk to him about.
After the July bone marrow fiasco, I want to have my results presented to me at my appointments when possible... not via email or on the phone and then end up having to make an appointment to discuss the results in person anyway. Luckily, there is the patient portal I can use to find out most of my blood work and test results before my appointment. But it always hides pathology tests so I can't see my SPEP and biopsy results.
Although...after careful consideration, I might email his secretary (God bless her, she hears from me a lot) the day before my appointment to see if she can send me the results of my biopsy and m-spike.
I know, totally cheating.
But, I sort of don't want to go into the appointment BLIND not having ANY idea what my biopsy or m-spike results are. I need to be prepared! And of course, I need to compose my list of questions. :)
I have an appointment with a "high risk" OB on Monday. These particular doctors who practice Maternal-Fetal Medicine are also known as perinatologists. This is a subspecialty to obstetrics and gyncology mainly used for patients with high-risk pregnancies.
Side note: I have been starting to keep track of all the different "ologists" I have been to.
So far: hematologist/oncologist, dermatologist, opthamologist, rheumatologist, endocrinologist, gyncologist and now - perinatologist. Crazy.
Anyway, right before my biopsy this summer, I went to see a nice, good, old, "regular" OB for a preconception appointment.
I told the doctor I had a diagnosis of MGUS and she nodded her head and said, "Ohh okay. I've had patients with that. *long pause* Uh, but, remind me exactly what that is again?"
Right... Not helpful!
While going through my list, "Questions You Should Ask At A Preconception Appointment (heh)" - that I had printed off the Internet, I came to the question, "What can my husband do to increase our chances of conceiving?" She responded, "Treat you like a queen and buy you diamonds!"
Funny, sure. Helpful, no. I guess this doctor was trying to lighten up the mildly hysterical person in front of her who was reading a list of 30+ questions from "the bump" dot com. Regardless, I decided that I liked this witty, regular OB. Plus, she said she thought I would be FINE to have kids. Sweet.
Then, in July, after pregnancy plans were shown a big huge STOP sign until December (or indefinitely...), I was advised to go for yet another preconception appointment, this time with a perinatologist. We'll see if this doctor has heard of MGUS and has tips and suggestions other than J buying me diamonds. Not that I am opposed to him buying me diamonds, of course.
This is why I am here! Okay, I began writing this blog post when I first started my blog about a month ago. I have had it in my "drafts" and have been avoiding it like the plague. To be honest, there is not a whole lot of information or research on the topic of pregnancy and its implications for people living with MGUS, smoldering myeloma, or multiple myeloma. Myeloma and pregnancy is really "uncharted territory" as most people diagnosed are beyond childbearing years.
After J and I got married in August of 2011 we started talking about if/when we would have children. We wanted to be married at least a year before we started on the "baby" journey. As I have written previously, after my diagnosis of MGUS in September of 2009, I never thought pregnancy would be an issue. It never even entered my mind!
In April, I was in to see my doctor at Dana-Farber. J and I were thinking of trying to start a family that summer. I saw a research fellow before seeing Dr. R and I asked her if she thought I would be okay to have children, assuming she would say, "Of course!" However, her response was, "If you want to have children, you should make sure to have them sooner than later." I was 28 and thought that I had plenty of time to have kids - but the fact that she said "sooner than later" was a bit unsettling.
When Dr. R came in he said he thought that I would be fine to have children but he wanted me to have a bone marrow biopsy. I had never had a BMB before and this would be for us to be "super careful" and make sure I was stable before conceiving. He said that if the plasma cells were below 5% green light for babies, if the cells were between 5-10% I would need to be more cautious, and if they were 10% or higher I would then be considered "smoldering." We all know how that turned out.
After my biopsy results suggested smoldering myeloma (10-15%), Dr. R said that if I were to become pregnant there was risk that things could progress more rapidly than if I had I not become pregnant. He said the cells have estrogen receptors and my body/immune system would be focusing on taking care of the baby instead of fighting off these cells and could lead to more rapid growth of the "bad" plasma cells. The baby would be fine - myeloma is not passed down from mother to child - they know that much. He said that if I do become pregnant and things start to go "south" with my health (meaning CRAB symptoms - elevated calcium, renal failure, anemia, or bone destruction) I would need to deliver the baby as quickly as possible in order to start treatment.
Margaret, who writes an excellent blog called, Margaret's Corner: Living with Smoldering Myeloma has graciously allowed me to link a post that she wrote about pregnancy here. Please check it out! As you can read on her post, the limited information that she found was not the most encouraging.
I have done my best googling and I have also not found many studies or articles written on this topic. This is what I have found, some of which is the same as on Margaret's post:
Haematological cancers in pregnancy
-There is a table in this article that states for asymptomatic myeloma, the suggested approach is "monitor carefully" during all pregnancy stages. For symptomatic myeloma, pregnancy termination is recommended during for the first trimester. During the second and third trimester, suggested treatment is similar to non-pregnant women using chemotherapy. However, doctors should avoid treating with lenalidomide (Revlimid) and thalidomide as they cause birth defects but might consider treatment using bortezomib (Velcade) but fetal toxic affects have not been established. Aggressive cases require early delivery. Renal failure complicating myeloma in pregnancy
Obviously, there is a lot of unknowns with my situation. I need to see what my biopsy results are in December. Also, like I have written before, most people are not diagnosed with MGUS at my age. But scientists now know that MGUS always precedes multiple myeloma. However, many women diagnosed with multiple myeloma are in their 50s, 60s, and 70s - and many had children before diagnosis. Which means, if these patients had children in their 20s or 30s and had undiagnosed MGUS and were not diagnosed with active multiple myeloma until 60 or so...maybe their pregnancies didn't affect things. Maybe not. Maybe yes.