Happy St. Patrick's Day!

This weekend we have been searching for a kitty costume to dress up Hennessy for St. Patrick's Day. Yes, we've become "those people." Couldn't find much except for this. He was NOT happy with the bow-tie. AT ALL. But isn't he so cute? He's almost as Irish as I am!

Happy St. Patrick's Day!

Just a few others... All I wanted was a nice, calm, sweet, loving, lap cat....

His new favorite hang-out spot... on THE FRIDGE.

 

 



Second favorite hang out spot while we do the dishes....

 

 



May the luck of the Irish be with you this St. Patrick's Day. :)

"Eat this and you WILL DIE"

Dr. M and I have a love/hate relationship. I love all the information he provides (among the misinformation sprinkled in) and I hate him because he scares the crap out of me on a daily basis. This Dr. M is not to be confused with my ID specialist Dr. M, of course.

Last summer as I attempted to start my "permanent health kick" I signed up for emails from the one and only Dr. M. Every single day my inbox contains a cryptic message stating, "Eat this and YOU WILL DIE." Well, maybe not exactly that. Here is a brief sampling of the article titles:


Eating This Could Turn Your Gut into a Living Pesticide Factory
 
Proven to Kill Cancer Cells without Killing You
 
Reconsider Drinking another Glass of Water until You Learn the Disturbing Truth
 
Help Flush These Brain-Damaging Toxins Out of Your Body
 
Discover Why Your Tap Water May Not Be as Safe as You Think

Avoid This Meat Like the Plague (Unless You Want to Eat Horse Meat or Get Sick)

Don't Eat Too Much of This Healthy Food (Even Organic) - It May Be Linked to Cancer

Doctor Stops Eating This - Starves Cancer and Escapes Death

Seriously?! I have come to the conclusion that pretty much anything I were to eat, drink, wear, use, touch, breath in, or look at, will eventually KILL ME, according to Dr. M. However, one email that I received recently made me feel like I might NOT die tomorrow because of something I've eaten or not eaten and may actually be headed in the right direction!

Common Household Chemicals Linked to Human Disease Lately, I have really been attempting to limit my chemical exposure. Not easy sometimes but according to this list I'm on the right track!

What Can You do to Reduce Unnecessary Chemical Exposure to Your Family?

Rather than compile an endless list of what you should avoid, it's far easier to focus on what you should do to lead a healthy lifestyle with as minimal a chemical exposure as possible:

1. As much as possible, buy and eat organic produce and free-range, organic foods to reduce your exposure to pesticides and fertilizers. (Totally trying to do this!)
2. Rather than eating conventional or farm-raised fish, which are often heavily contaminated with PCBs and mercury, supplement with a high-quality purified krill oil, or eat fish that is wild-caught and lab tested for purity. (Eh... don't really buy fish.)
3. Eat mostly raw, fresh foods, steering clear of processed, prepackaged foods of all kinds. This way you automatically avoid artificial food additives, including dangerous artificial sweeteners, food coloring and MSG. (Definitely trying to do this!)
4. Store your food and beverages in glass rather than plastic, and avoid using plastic wrap and canned foods (which are often lined with BPA-containing liners). (Only use glass pyrex dishes these days! Guilty of plastic wrap and the occasional canned good. Whoops.)
5. Have your tap water tested and, if contaminants are found, install an appropriate water filter on all your faucets (even those in your shower or bath). (Haven't had our water tested... I'm sure it's terrible.)
6. Only use natural cleaning products in your home. (Starting to make the switch...)
7. Switch over to natural brands of toiletries such as shampoo, toothpaste, antiperspirants and cosmetics. The Environmental Working Group has a great database⁶ to help you find personal care products that are free of phthalates and other potentially dangerous chemicals. I also offer one of the highest quality organic skin care lines, shampoo and conditioner, and body butter that are completely natural and safe. (Trying to make the switch...this is really hard.)
8. Avoid using artificial air fresheners, dryer sheets, fabric softeners or other synthetic fragrances. (I use dryer sheets. Bad.)
9. Replace your non-stick pots and pans with ceramic or glass cookware. (We have stainless steel pots and pans?)
10. When redoing your home, look for "green," toxin-free alternatives in lieu of regular paint and vinyl floor coverings. (Eh... nope.)
11. Replace your vinyl shower curtain with one made of fabric, or install a glass shower door. Most all flexible plastics, like shower curtains, contain dangerous plasticizers like phthalates. (We have a glass shower door where we live now but I've always used plastic liners in the past...whoops.)
12. Limit your use of drugs (prescription and over-the-counter) as much as possible. Drugs are chemicals too, and they will leave residues and accumulate in your body over time. (Sure... just say no.)
13. Avoid spraying pesticides around your home or insect repellents that contain DEET on your body. There are safe, effective and natural alternatives out there. (Definitely trying to do this!)

 

 Yikes, a lot to remember!

MMRF Race for Research 5K Walk/Run: Boston

J and I participated in the MMRF Race for Research last year - I wrote a post about it back in September. We have formed a team for the race in Boston this year as as well. The most recent race was actually held in September 2012, but typically the Boston race occurs in April, like this year.  The MMRF Race for Research at Carson Beach in South Boston will be on April 27 to raise awareness and funds for research of multiple myeloma. Hopefully it won't rain this year! :)

 

The Multiple Myeloma Research Foundation (MMRF) was established in 1998 as a 501(c)(3) non-profit organization by twin sisters Karen Andrews and Kathy Giusti, soon after Kathy's diagnosis with multiple myeloma. The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. As exceptional stewards of its donors' investments, the MMRF consistently surpasses its peers in fiscal responsibility and an outstanding 90% of total budget go directly towards research and related programming.

 

The Multiple Myeloma Research Foundation (MMRF) is a leading cancer-research foundation that has helped to double survival for multiple myeloma patients since its inception. Together with its partners in the pharmaceutical industry and at academic centers, the MMRF has contributed to the development of six new treatments in the last decade, several of which may be effective in treating other cancers. The MMRF continues to build innovative collaborative models that will accelerate the development of new and better treatments for multiple myeloma and all cancer patients, and lead to cures.

As the world's number-one private funder of multiple myeloma research, the MMRF has raised over $225 million since its inception and directs 90% of total budget to research and related programming. As a result, the MMRF has been awarded Charity Navigator’s coveted four four-star rating for nine consecutive years, the highest designation for outstanding fiscal responsibility and exceptional efficiency.

Held annually in nine cities across the country -- Atlanta, Boston, Chicago, Philadelphia, San Francisco, St. Louis, Tri-State (New Canaan, CT), Twin Cities, and Washington D.C. -- this family friendly 5K walk/run raises both awareness and funds for multiple myeloma. Since its inception in 2001 in Chicago, the MMRF Race for Research program has raised more than $17 million to support the Multiple Myeloma Research Foundation’s urgent work.

 

To learn more about the MMRF Race for Research 5K Walk/Run that may be in your area, please visit visit MMRF Race for Research.
 

 

If you would like to contribute to my team please visit:
Boston: Myeloma Mashers - MMRF Race for Research 5K Walk/Run

Not a Zebra!

I have had frequent fevers since the summer of 2009. When I saw Dr. R in December he suggested I see an infectious disease specialist to determine if the fevers I had been experiencing could be caused by something other than the smoldering myeloma. I saw Dr. M who thought that I might be a Zebra and could possibly have a periodic fever syndrome.

Well... I don't! The genetic testing was finalized last week and I have no mutations. I do not have a periodic fever syndrome. I am not a zebra.

No zebras here.

 

Dr. M said, "You don't have any of the 'KNOWN' mutations for a periodic fever syndrome."  Heh. I don't think he likes being wrong!

After I saw Dr. M in January he requested as "homework" that I record my temperature when I first wake up and then again between 7-8PM which I have been doing quite diligently. When I spoke with him regarding the results of the genetic testing, I mentioned to him that I seemed to be having fewer fevers than I usually do. I had only had a temperature over 100.4 four times since mid January and my temperature was below 100.4 by the next morning. He was happy to hear I'd been, “cooler than usual” and added "you need to come see me more often!" Hah. He cured me!

Not really. I had a temperature of 101.6 last night. And the beat goes on....

But anyway, Dr. M still wants me to go to see this fever specialist at the NIH. Not sure if I want to do that (Mo doctors, mo problems! Remember?) or even if the team would still want to see me for the study because I don't have any of the genetic mutations. He still wants me to have blood work when I first get a fever (CBC with differential, full chemistries (electrolytes and liver function tests), a CRP, a ferritin and triglyceride levels). Not entirely sure what he's hoping to "see" in this blood work that would be different when I have a fever. He said the monoclonal protein being produced by the MGUS/SMM clone could somehow be short circuiting the way my body regulates my temperature and it triggers/allows the periodic fevers to occur.  

Quick, quick, turn around... in more ways than one.

Last week, as J and I walked into Reagan National to fly back to Boston, I realized I had left my gloves on the NIH shuttle.

Bummer!

I decided it was a lost cause. Literally and figuratively. Oh well.

The day after we returned from Bethesda, J decided to try, on a whim, to call the NIH transportation desk to see if my gloves were found. And, surprisingly, they were still in the shuttle! I contacted the myeloma research nurse who said she would send them to me. Annnnnd... here they are.

Super quick turn around. Very nice people they have down there in Bethesda.


And, most importantly, I have the preliminary results of my bone marrow biopsy from last week. Another quick turn around.  Drum roll please...


5-10% plasma cells!


!!!!!!!!!!!!!


So, let's recap. I have had three, THREE, bone marrow biopsies since July 2012. Every time... a different reading. The results have been 10%, 10-15%, and now 5-10% plasma cells.


Stupid, stupid, stupid, patchy cells.


But. I'm thrilled, obviously.


Third time's a charm? :)

Bone Marrow Biopsy & CT Scan: NIH Day Two

Needless to say I didn't get a lot of sleep the night after the possibly "abnormal" area on my arm was discovered. The NIH team requested I not eat after midnight in case they were able to get me in for a morning PET/CT. Didn't have much of an appetite anyway! To say I had knots in my stomach is a bit of an understatement.

In the morning I received a call from the research nurse who said I could go for a CT of my arm after my bone marrow biopsy and aspiration that afternoon. There were no available slots for a PET/CT that day. The CT of my arm would only take about 20 minutes. Sweet. PET/CTs, I know from experience take at least 2 hours -  one hour for the tracer to settle, and one hour for the actual scan. I was happy with the shorter test!

J and I headed to the procedure suite for my bone marrow biopsy. I was greeted by a nurse (also named Elizabeth!) who took my temperature by swiping this wand over my forehead then back behind my ear. That was a first. Again - NORMAL temperature. She also took my blood pressure and pulse. I met the research fellow who would be performing the biopsy and aspiration. She introduced herself, "Hi, I'm Dr. so-and-so. I'm actually from the myeloma research team here at NIH. I've heard a lot about you."

Hmmm... What?

Apparently the myeloma team had discussed my case. She was going to do the biopsy on my left side since my biopsy in December was on my right. I mentioned to her how HORRIBLE my first biopsy was with the shooting pain down my leg. She said she would be very careful and that she had done many biopsies before.

I asked her how many aspirates she would be taking (I've have 4 vials for my other biopsies at Dana-Farber) and she said only ONE. Score. The aspirates are the most painful, in my opinion. The only difference between my biopsy at NIH and my biopsies at Dana-Farber was that there was a nurse, tech, and doctor, while at Dana-Farber I had just a PA and a tech with me. They also put all this crazy blue antiseptic all over my back. The procedure was fine, I feel like I'm becoming a pro at letting people suck out my marrow and bone. No big deal any more. This time the most painful part was when she injected the lidocaine - felt like a very long bee sting.

After the research fellow was finished I had to lay down for 15 minutes (never had to do that before - at DF they just sent me on my way) and I had to get a needle stick in my finger. Haven't had one of those since I was a little kid! Not really sure what that blood sample was for. The tech let me look at the biopsy - the piece of bone was tiny, smaller than my biopsies at Dana-Farber. Apparently they need less tissue at NIH? One aspirate vs. four and from my recollection a much smaller piece of bone.

Hope it was a good one. :)

After the biopsy was the CT scan of my arm. Sort of much ado about nothing. I had to wait forever in the second waiting room. Had a funny conversation with an older gentleman with the best southern accent I've ever heard. He kept saying how "cheeeeellllly" he was with his southern drawl. He was only wearing a tiny robe and slippers. Heh.

When I finally got called for the scan I was all set up but then apparently the computer froze while I was laying in this sort of weird position - almost part way off the table so my arm was more centered for the scan. After they "rebooted" the actual scan was literally 5 minutes I'm pretty sure. Probably less. Hopefully less radiation since it was just my arm? I hope so. After the CT we went up to the 12th floor clinic to meet with Dr. L, Dr. MR, and the research nurse.

So J and I were in the waiting room at the clinic when Dr. L, Dr. MR, and the research nurse came through the outside doors. I anxiously stared at them, trying to read their faces. Dr. L came over to me, smiled and whispered, "It's fine! It's fine!" The other doctor said, "Oh geez, we do respect privacy here but it's like Christmas for him, he can't wait!" HA. Kind of funny. Honestly, Dr. L really is a kind and compassionate doctor. I totally appreciate him not making me "sweat it out" and wait to hear the news until I got into the room!

They took us into a room and said the preliminary read of the CT scan was back... Apparently there is an "abnormality" on the inside of my left humerus, but it's not a lytic lesion (which I guess is on the outside of the bone). They said it would be very rare to have just one lytic lesion anyway. From what I understand, sometimes bones inside are not exactly smooth or even and my left humerus has an indentation on the inside.

The drawing of the bone on the right is what my humerus looks like inside.



The picture I posted above: the drawing of the bone on the left that has the labels of cortex and bone marrow and shows that little line coming out - that's apparently what a lytic lesion looks like. The bone on the right is what my humerus looks like. See that indentation on the inside? Yeah. The bone drawing below the other two is what my humerus looks like on the CT scan - it's a different view -  the inside part of the bone is uneven. The arrow on the top would be what a lytic lesion would look like, but mine does not have. Mine just has the unevenness inside, not outside.

The NIH team wants me to have the films from the skeletal survey and CT scan sent to Dr. R and have him compare my arm on the PET/CT from August to the CT of my arm from today. But overall, they aren't too concerned and it's just something to watch and see if it develops into anything. In the email response from Dr. R when I asked him about the PET/CT vs. CT of my arm, he said for me to "send best wishes to Dr. L" so I passed on the message - Dr. L said the same. So funny all these doctors know each other. I guess the myeloma community is pretty small.

Dr. L spoke about the gene expression profiling they are working on - apparently they have the profiles of 50 smoldering myeloma patients so far. He spoke about how important the bone marrow biopsy at the beginning of the study (now) is and then the importance of me getting a bone marrow biopsy at NIH again in 5 years. Basically he eluded to the fact that if I sign up to be in the study, these two bone marrows are really important. If I am going to be in the study, I need to be committed to coming back and, at the end, have another biopsy. Duly noted! 

Don't worry Dr. L, I won't quit part way through your study and mess up your results!

Dr. L asked what Dr. R was planning to "do" with me. He said the standard of care is to "watch and wait" which I know. From this point forward I should just be monitored and assess my "clinical symptoms" as they come. Super.

This is actually an interview with Dr. L from about a year ago: Smoldering Myeloma: What Do The Latest Research Findings Mean? A Discussion With Dr. Ola Landgren

I know that treatment of patients with SMM is still in it's very, very, early stages and is definitely not the "standard of care." I, for one, would like to hold off on treatment as long as possible as people can smolder for years and years. I don't think I'm considered high risk right now anyway. However, there is something to be said for waiting too long to start treatment. If you have bone damage and your kidneys are failing - you've waited too long. The decision of when to start treatment seems very difficult to determine. It's a fine line to walk, especially for me being on the younger side; any medication I start taking would most likely be for the rest of my life because at this time myeloma is incurable.

In closing, I share with you this quote from the interview posted above with Dr. L:

Our ultimate goal is to find a cure for myeloma. It is an exciting time to develop new strategies for myeloma and its precursor states!

For sure. I signed the consent form for the Natural History Study and will return to the National Institute of Health / National Cancer Institute in 6 months.

Dr. MR, will call me with the results of my bone marrow biopsy and m-spike next week.

Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One

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.

Really bad picture of sign inside!

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."

Heh.

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.

Bad note-taker.

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." Hmm. Ok? Not sure I like ok.

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.

No way.

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:



Dear Elizabeth,

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.

Best wishes,

Ola




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".

The more DOCTORS we come across... the more problems we see....

Yup. It was a very long night.