Today I have an an appointment with Dr. R at DFCI. This is my fourth quarter visit this year which will (hopefully) be my last visit of 2013. I know it's only November, but I am glad to see 2013 go.
Interestingly my first visit with Dr. R was just around this time 4 years ago - November 16, 2009. My m-spike that had been found that July was just a "trace" of IgG lambda and I was "officially" diagnosed with MGUS in August/September. After seeing a local hem/onc and getting my official MGUS diagnosis I decided to go to Dana-Farber. What an interesting 4 years it's been. I got married, changed jobs, moved (twice), got upgraded to smoldering myeloma, and had millions of blood draws, 24 hour urine, MRIs, PET/CTs, CTs, skeletal surveys, etc.
My first visit with Dr. R back in November 2009 was almost 2 hours long. I was the last patient of the day and Dr. R had to let me out of the old Dana-Farber building as all staff had left and the custodian was vacuuming. I believe my appointment was scheduled for 3:00 and we didn't leave until almost 8:00. I thought that might be a one time thing but the wait times and leaving at 8:00 when I have a late in the day appointment have just been things I've come to accept. :)
Hopefully this will be an uneventful visit!
Wednesday, November 13, 2013
Monday, November 11, 2013
M-spike & Shoulder
Well, I had my 3 month blood and 24 hour urine tests last week. Everything is looking... okay. Some numbers up, some numbers down, m-spike up. My m-spike is at the highest level it's ever been since it was discovered in July 2009 when it was just a "trace" of IgG lambda. I head to Dana-Farber to meet with Dr. R this week to discuss.
In other news, my shoulder saga continues. I still cannot believe all of this has happened from a FLU SHOT. After a few sessions of PT with no improvement and significant pain even with passive movement, my PCP finally ordered an MRI of my shoulder. The MRI revealed two partial bursal tears and a whole bunch of other crap. Apparently shoulders are very complicated.
I've been in contact with Dr. Google to get to the bottom of this as the MRI report appears to be in another language. My PCP does not think surgical intervention will be warranted (thank God) but I do have an appointment with an orthopedic surgeon this week. Hoping this doctor will be helpful and provide some guidance in where to go from here. I'd like to be able to touch the top of my head again.
That would be swell.
Hopefully there will be cortisone shots in my future that may provide some relief.
Because, obviously that's what I really need - another shot into my shoulder. :/
In other news, my shoulder saga continues. I still cannot believe all of this has happened from a FLU SHOT. After a few sessions of PT with no improvement and significant pain even with passive movement, my PCP finally ordered an MRI of my shoulder. The MRI revealed two partial bursal tears and a whole bunch of other crap. Apparently shoulders are very complicated.
I've been in contact with Dr. Google to get to the bottom of this as the MRI report appears to be in another language. My PCP does not think surgical intervention will be warranted (thank God) but I do have an appointment with an orthopedic surgeon this week. Hoping this doctor will be helpful and provide some guidance in where to go from here. I'd like to be able to touch the top of my head again.
That would be swell.
Hopefully there will be cortisone shots in my future that may provide some relief.
Because, obviously that's what I really need - another shot into my shoulder. :/
Sunday, October 27, 2013
Mind Body Update
In August I posted about a clinical trial commencing this fall in Boston at Mass General / The Benson-Henry Institute for Mind-Body Medicine - Mind Body Medicine for MGUS and Smoldering Multiple Myeloma. Dr. R had recommended I try to enroll as it would be "great for me."
Hmmm...say what? Me stressed?! No way.
This research study is a supportive care trial evaluating the effectiveness of a mind body medicine intervention called the Relaxation Response Resiliency Program (3RP) on stress and stress related symptoms in patients with MGUS and SMM. Data from this study will also be used to assess changes in gene expression that result from 3RP intervention, particularly genetic pathways that are known to be dysregulated in multiple myeloma. You can read more about the study here:
Mind Body Medicine and MGUS and SMM: A Promising New Approach
Well, I am happy to report that I have been accepted into this research study. I’m super pumped. The study is randomized - participants are randomly selected to be in either the “immediate" group - which means they go through the 8 week 3RP program at time of sign up, starting at the end of October - or the “wait list” group which means they go through the 3RP program starting in January.
I’m a tad bummed because I was selected to be in the “wait” group – I need some mind/body medicine now! January seems so far away. Oh well…luck of the draw. Like flipping a coin. The study is enrolling ~96 participants AND…drum roll please… I was the FIRST person to sign up! Participant #1. True story.
This is the Clinical Trial Listing:
http://www.clinicaltrials.gov/ct2/show/NCT01955395?term=13-266&rank=1
Hmmm...say what? Me stressed?! No way.
This research study is a supportive care trial evaluating the effectiveness of a mind body medicine intervention called the Relaxation Response Resiliency Program (3RP) on stress and stress related symptoms in patients with MGUS and SMM. Data from this study will also be used to assess changes in gene expression that result from 3RP intervention, particularly genetic pathways that are known to be dysregulated in multiple myeloma. You can read more about the study here:
Mind Body Medicine and MGUS and SMM: A Promising New Approach
Well, I am happy to report that I have been accepted into this research study. I’m super pumped. The study is randomized - participants are randomly selected to be in either the “immediate" group - which means they go through the 8 week 3RP program at time of sign up, starting at the end of October - or the “wait list” group which means they go through the 3RP program starting in January.
I’m a tad bummed because I was selected to be in the “wait” group – I need some mind/body medicine now! January seems so far away. Oh well…luck of the draw. Like flipping a coin. The study is enrolling ~96 participants AND…drum roll please… I was the FIRST person to sign up! Participant #1. True story.
This is the Clinical Trial Listing:
http://www.clinicaltrials.gov/ct2/show/NCT01955395?term=13-266&rank=1
Friday, October 18, 2013
The Flu Shot From Hell
Dr. R recommended I get the flu shot and pneumonia vaccine last year after my "upgrade" to smoldering and because I had been very sick during the winter with multiple sinus infections, chronic cough etc.
I followed his instructions and had both shots last fall. No issues minus one crazy male nurse giving me a hard time about the pneumonia vaccine. As a result, this past winter I was MUCH healthier: only sick with a cold 1-2 times, one sinus infection, and well, I did get the flu, but OVERALL I was much healthier than the previous winters. Also, exercise and healthy food helped!
Anyway, not wanting to jinx anything, and hoping for another "healthy for me" winter, J and I went to a flu clinic at our PCPs office about 3 weeks ago.
The Flu Shot From Hell story goes like this:
I entered the exam room and sat down. The LPN came over, used the alcohol wipe to clean around my shoulder/arm area. He said he was going to get the shot ready while the alcohol dried.
Okay, sure, not a problem.
Then, he came around to my left side and without any warning, or really looking at my arm at all, jabbed the shot into my shoulder. I literally jumped and yelled out something along the lines of, "OUCH!" He responded and said, "Whoa sorry! I guess you're a really small person!" and proceeded to inject the flu vaccine.
I looked over at my shoulder and a small amount of blood was dribbling out of my arm. And, I noticed the the injection site was at the TOP OF MY SHOULDER. Not into my deltoid or anywhere near my deltoid.
Nope.
AT THE TOP OF MY SHOULDER.
The LPN nervously stuck the band aid onto the injection site (this band aid was coming up over my shoulder, mind you) and I was on my way. Shocked and confused, but on my way. My arm was throbbing and I could barely move my shoulder.
Anyway, to make a very long, melodramatic story short, three weeks have gone by since this incident. These three weeks have consisted of ice and heat therapy, gentle stretching, shoulder exercises, and ridiculous amounts of Advil. After two trips to my PCP and a diagnosis of a "rotator cuff injury due to incorrect administration of the flu vaccine" - which could be just an injury that is causing pain and inflammation, a partial tear, or a full thickness tear...
I am headed to physical therapy next week.
Because I had the flu shot injected in the incorrect location on my arm.
Seriously?
I wish I was joking.
If after 4 weeks of PT there is no improvement, I will have an MRI of my shoulder and be referred to an orthopedic specialist.
I followed his instructions and had both shots last fall. No issues minus one crazy male nurse giving me a hard time about the pneumonia vaccine. As a result, this past winter I was MUCH healthier: only sick with a cold 1-2 times, one sinus infection, and well, I did get the flu, but OVERALL I was much healthier than the previous winters. Also, exercise and healthy food helped!
Anyway, not wanting to jinx anything, and hoping for another "healthy for me" winter, J and I went to a flu clinic at our PCPs office about 3 weeks ago.
The Flu Shot From Hell story goes like this:
I entered the exam room and sat down. The LPN came over, used the alcohol wipe to clean around my shoulder/arm area. He said he was going to get the shot ready while the alcohol dried.
Okay, sure, not a problem.
Then, he came around to my left side and without any warning, or really looking at my arm at all, jabbed the shot into my shoulder. I literally jumped and yelled out something along the lines of, "OUCH!" He responded and said, "Whoa sorry! I guess you're a really small person!" and proceeded to inject the flu vaccine.
I looked over at my shoulder and a small amount of blood was dribbling out of my arm. And, I noticed the the injection site was at the TOP OF MY SHOULDER. Not into my deltoid or anywhere near my deltoid.
Nope.
AT THE TOP OF MY SHOULDER.
The LPN nervously stuck the band aid onto the injection site (this band aid was coming up over my shoulder, mind you) and I was on my way. Shocked and confused, but on my way. My arm was throbbing and I could barely move my shoulder.
Anyway, to make a very long, melodramatic story short, three weeks have gone by since this incident. These three weeks have consisted of ice and heat therapy, gentle stretching, shoulder exercises, and ridiculous amounts of Advil. After two trips to my PCP and a diagnosis of a "rotator cuff injury due to incorrect administration of the flu vaccine" - which could be just an injury that is causing pain and inflammation, a partial tear, or a full thickness tear...
I am headed to physical therapy next week.
Because I had the flu shot injected in the incorrect location on my arm.
Seriously?
I wish I was joking.
If after 4 weeks of PT there is no improvement, I will have an MRI of my shoulder and be referred to an orthopedic specialist.
This is how I feel about flu shots right now.
Evil.
Friday, September 27, 2013
The Time You Have (In JellyBeans)
Very cool video that is worth watching.... less than 3 minutes! What will you do with your time?
Tuesday, September 24, 2013
My Favorite "Rock Star"
I am a member of several myeloma support groups online. In one of these groups, lots of research and information is shared among the members. This is a valuable way to learn from each other and gain new information related to the treatment and management of myeloma. Recently, some members have attended patient symposiums through the MMRF and IMF. It's a amazing how excited the group gets when we hear that members of our group saw, met, and spoke to some of the top multiple myeloma specialists in the world. We joke that these doctors are in fact "our" rock stars!
Well, one "rock star" that is at the top of my list is Kathy Giusti who is not only a myeloma patient, but the co-founder of the Multiple Myeloma Research Foundation. I've had a draft blog post entitled, "Kathy Giusti is a Rock Star" since I started this blog a year ago. Finally getting around to publishing it now. This amazing woman was diagnosed with smoldering myeloma in 1996. At the time, she had one daughter and she was determined to give her daughter a sibling. In 1997, she gave birth to her son. While fighting to survive and to complete her family, in 1998 she and her twin sister founded the Multiple Myeloma Research Foundation. In 2005, Kathy's myeloma became active and she underwent a allogentic (donor - from her twin sister) in 2006.
Kathy's story is incredibly inspirational and the work she is doing through the MMRF for myeloma patients is outstanding. Here are a few video clips and articles that explain this work much better than I can.
Kathy Giusti - Morning Joe 9/23/13
The Multiple Myeloma Research Foundation (MMRF) Launches Revolution in Precision Medicine to Accelerate Cures
Kathy Giusti - Congress Unplugged 2012
Kathy Giusti: Two Wars Against Cancer
Kathy Giusti - Cancer Can't Stop Me
Kathy Giusti: Time 100 Most Influencial People in the World
The Multiple Myeloma Research Foundation
I have had the opportunity to participate in two MMRF Race for Research events: last September and in April. I am proud to support such an excellent organization like the MMRF. Kathy Giusti is a rock star in my eyes, in more ways than one. :)
Well, one "rock star" that is at the top of my list is Kathy Giusti who is not only a myeloma patient, but the co-founder of the Multiple Myeloma Research Foundation. I've had a draft blog post entitled, "Kathy Giusti is a Rock Star" since I started this blog a year ago. Finally getting around to publishing it now. This amazing woman was diagnosed with smoldering myeloma in 1996. At the time, she had one daughter and she was determined to give her daughter a sibling. In 1997, she gave birth to her son. While fighting to survive and to complete her family, in 1998 she and her twin sister founded the Multiple Myeloma Research Foundation. In 2005, Kathy's myeloma became active and she underwent a allogentic (donor - from her twin sister) in 2006.
Kathy's story is incredibly inspirational and the work she is doing through the MMRF for myeloma patients is outstanding. Here are a few video clips and articles that explain this work much better than I can.
Kathy Giusti - Morning Joe 9/23/13
The Multiple Myeloma Research Foundation (MMRF) Launches Revolution in Precision Medicine to Accelerate Cures
Kathy Giusti - Congress Unplugged 2012
Kathy Giusti: Two Wars Against Cancer
Kathy Giusti - Cancer Can't Stop Me
Kathy Giusti: Time 100 Most Influencial People in the World
The Multiple Myeloma Research Foundation
I have had the opportunity to participate in two MMRF Race for Research events: last September and in April. I am proud to support such an excellent organization like the MMRF. Kathy Giusti is a rock star in my eyes, in more ways than one. :)
Sunday, September 1, 2013
NIH says, Your m-spike is going up? Is it?
Umm... are those statements or questions?!
Alright, the blog has been very neglected the past couple of weeks between all of my jet-setting to Nantucket and the NIH and with.... dun, dun, dun.... school starting! Needless to say things have been very busy.
So, let's recap. A couple weeks ago I traveled to the National Institute of Health / National Cancer Institute for my second visit for the Natural History Study of MGUS and SMM. I traveled by myself which was kind of a big deal since it was only the second time I've ever flown alone and I was a tad nervous. Of course my flight from Logan was mildly delayed and had to be rerouted due to bad thunderstorms in New Jersey. Bad start to the morning! I found out our plane was going to arrive at Reagan National a half hour late and I was going to miss the NIH shuttle I had planned to take. There was of course another shuttle (2 hours later) but I was worried I was going to be late for my appointment and I didn't want to wait around at the airport. So, I decided against my better judgement to take a cab.
I tried to convince the driver to give me a flat rate to NIH but he wouldn't budge. Twenty minutes and a ridiculously expensive cab ride later, I arrived at NIH. Of course because of tight security the cab couldn't bring me IN to the NIH so I had to take a shuttle to actually get to building 10 since I was dropped off at the entrance completely across campus from where I needed to be. Oh well. A short shuttle ride later I arrived at building 10, had my blood draw, and gave my urine sample. Easy.
I wasn't sure which doctor I would be seeing at this appointment. Back in February, I saw Dr. L, Dr. R and a whole slew of myeloma research fellows. My husband and I counted 8 different doctors in the room with us. Turns out this visit was quite a bit more low-key. I saw a really nice doctor named Dr. Q. In the appointment room she reviewed my interim labs from DFCI. As Dr. Q looked through the papers, she said to me, "Your m-spike is going up? Is it?"
Okay. And as I wrote at the beginning of this blog post... is that a statement or a question??!!
The thing is, as you look at my SPEP reports from 2009 to present, my m-spike is in fact, going up. BUT, it's still small and overall "stable" since January, but definitely higher than a year ago.
Dr. Q and I had some good conversations re: my FISH results, bone density, and family planning. It was nice to have a female doctor for once; she was very empathetic to my situation. She told me about a study starting at the NIH using PET scans with a new tracer that is currently used in Europe. They are waiting on FDA approval to start using this. She said she would call me in a couple weeks to review my blood tests. I will return for my third visit in 6 months, and then annually after that. There actually is probably a lot more to write about in regards to this visit than what I am writing, but this is all I have in me for now! I actually recorded my visit on my phone so I will have to review that sometime and share some more details in another post. :)
My second visit for the Natural History Study of MGUS and SMM (minus the stupid cab ride grrr) was no big deal. YAY! Although, I must add on the shuttle ride back to Reagan I did forget to tell the driver which airline I needed...went through the whole airport and I didn't get off the shuttle. Totally wasn't paying attention. Driver was not happy. Whoops. But, overall quite less uh, terrifying? than my initial visit.
Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One
Bone Marrow Biopsy & CT Scan: NIH Day Two
And. The best part was my flight was billed directly to the NIH. And. I got a "meal voucher." Not bad for a day of travel, free second opinion, and donating about 15 vials of blood and a urine sample to myeloma research, right?
However...ahem, THIS is what I got back from the meal voucher:
Alright, the blog has been very neglected the past couple of weeks between all of my jet-setting to Nantucket and the NIH and with.... dun, dun, dun.... school starting! Needless to say things have been very busy.
So, let's recap. A couple weeks ago I traveled to the National Institute of Health / National Cancer Institute for my second visit for the Natural History Study of MGUS and SMM. I traveled by myself which was kind of a big deal since it was only the second time I've ever flown alone and I was a tad nervous. Of course my flight from Logan was mildly delayed and had to be rerouted due to bad thunderstorms in New Jersey. Bad start to the morning! I found out our plane was going to arrive at Reagan National a half hour late and I was going to miss the NIH shuttle I had planned to take. There was of course another shuttle (2 hours later) but I was worried I was going to be late for my appointment and I didn't want to wait around at the airport. So, I decided against my better judgement to take a cab.
I tried to convince the driver to give me a flat rate to NIH but he wouldn't budge. Twenty minutes and a ridiculously expensive cab ride later, I arrived at NIH. Of course because of tight security the cab couldn't bring me IN to the NIH so I had to take a shuttle to actually get to building 10 since I was dropped off at the entrance completely across campus from where I needed to be. Oh well. A short shuttle ride later I arrived at building 10, had my blood draw, and gave my urine sample. Easy.
I wasn't sure which doctor I would be seeing at this appointment. Back in February, I saw Dr. L, Dr. R and a whole slew of myeloma research fellows. My husband and I counted 8 different doctors in the room with us. Turns out this visit was quite a bit more low-key. I saw a really nice doctor named Dr. Q. In the appointment room she reviewed my interim labs from DFCI. As Dr. Q looked through the papers, she said to me, "Your m-spike is going up? Is it?"
Okay. And as I wrote at the beginning of this blog post... is that a statement or a question??!!
The thing is, as you look at my SPEP reports from 2009 to present, my m-spike is in fact, going up. BUT, it's still small and overall "stable" since January, but definitely higher than a year ago.
Dr. Q and I had some good conversations re: my FISH results, bone density, and family planning. It was nice to have a female doctor for once; she was very empathetic to my situation. She told me about a study starting at the NIH using PET scans with a new tracer that is currently used in Europe. They are waiting on FDA approval to start using this. She said she would call me in a couple weeks to review my blood tests. I will return for my third visit in 6 months, and then annually after that. There actually is probably a lot more to write about in regards to this visit than what I am writing, but this is all I have in me for now! I actually recorded my visit on my phone so I will have to review that sometime and share some more details in another post. :)
My second visit for the Natural History Study of MGUS and SMM (minus the stupid cab ride grrr) was no big deal. YAY! Although, I must add on the shuttle ride back to Reagan I did forget to tell the driver which airline I needed...went through the whole airport and I didn't get off the shuttle. Totally wasn't paying attention. Driver was not happy. Whoops. But, overall quite less uh, terrifying? than my initial visit.
Abnormal Skeletal Survey & Perfect Blood Work: NIH Day One
Bone Marrow Biopsy & CT Scan: NIH Day Two
And. The best part was my flight was billed directly to the NIH. And. I got a "meal voucher." Not bad for a day of travel, free second opinion, and donating about 15 vials of blood and a urine sample to myeloma research, right?
However...ahem, THIS is what I got back from the meal voucher:
Let's see... a five, and three ones. Gee, that's eight dollars. Yes, that is correct. 8 bucks. It almost covered my bottle of water and muffin from the Au Bon Pan in building 10. ;)
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