Happy New Year & News

New Weapons in the Fight Against Multiple Myeloma
Happy 2016! Great news right? 
I have not written an entry in this blog since May – yikes! 2015 was quite a year. I didn’t have much interest in writing for some reason, and doctors appointments, working, and everyday life got in the way. I look back at my entry from January 2015 and think of how much of a emotional roller coaster 2015 ended up being health wise. But I made it through! Here’s to hoping 2016 is a wonderful year. 

"Life is tough… Get a helmet"

Really good article if you are in need of a helmet ;)


Brownie points if you know what that quote is from ;)

Retinal Vasculitis and Cystoid Macula Edema and Prednisone… Oh my!

I have been totally slacking in the blog department. But it’s not because I have a lack of medical material to report about these days. Nope. Quite the opposite in fact. The last 3 months I have had more appointments and tests than I ever have had before.

I have always had bad eyes. Like everyone in my family, I am near-sighted. I started wearing glasses for distance in about the 6th grade to see the board in school. Eventually my vision worsened enough that I started needing glasses all the time and once I got old enough I transitioned into contact lenses. Over the years, I had a pretty good system where I went to the optometrist every other year and reordered my one year prescription of contacts and managed to make them last (in combination of wearing my glasses) until my next appointment.

In September,  I went for a routine eye exam with my optometrist. I felt like my eyes had worsened and probably needed a new prescription. However, I expected to be in and out of the appointment fairly quickly, with the outcome resulting in an up-to-date prescription that would allow me to order fresh new contact lenses. Unfortunately, this wasn’t in the cards.

While the optometrist was checking my eyes he noticed that the vision in my left eye was not improving with a higher prescription. This is actually my least favorite part of the appointment when the eye doctor says over and over, “Which is better: 1…2…1…2?” I have always had a hard time with that. After my eyes dilated, upon examination he noticed that there were “shiny spots” on my left macula compared to my right macula. This prompted him to refer me to an ophthalmologist within the next week. He said, “Sorry it wasn’t a ‘See you next year!’ appointment.”

I went to see an ophthalmologist named Dr. C who did a field test and a optical coherance tomography (OTC) scan. The tests were normal (apart from two small cycles in the parafoveal of my left eye) and upon examination she did not see anything wrong with my macula. She said to return for an appointment in about 3 months.

About a 3-4 weeks later, I noticed my vision started to get whacky. I felt like I couldn’t see my computer very well and the words on the screen were missing letters or parts of letters. I noticed this also while driving and reading highway signs. I called Dr. C and she recommended coming in for an appointment. She repeated the OTC scan which then showed bilateral cystoid macular edema.

A normal OCT – less than 250 microns.

My left eye in November – 571 microns.

My right eye in November – 465 microns. 

See those big holes? Yeah. Not good.

My opthalmologist was a bit shocked, and actually questioned if I was the right patient and wondered if there had been some sort of mix up with the tech who performed the OCT scan. Unfortunately…no mix up!

I returned to the office a few days later and had a fluorescein angiography – a test that revealed bilateral retinal vasculitis. Retinal vasculitis can be idiopathic or it can be caused by an infectious or autoimmune process. The first step was to rule out any type of infection that could be causing the retinal vasculitis. The first-line treatment for retinal vasculitis that is not caused by infection is prednisone, but that would be contraindicated if the retinal vasculitis were caused by infection. I was tested for a million different things and during that time my vision reduced to 20/40. Scary.

No infectious cause was found and I was prescribed prednisone. Steriods. Roid rage. The prescription was for 50 mg daily and was told to taper by 10 mg each week for a total of about 5-6 weeks.

Of course, I turned to google and began researching retinal vasculitis, a “sight threatening condition”. A lot of very scary things can cause retinal vasculitis. Then, I began researching prednisone. Mood swings. Weight gain. Irritability. Anxiety. Moon face. Diabetes. Bone loss. Ahhhhh. The alternative? Blindness.

My thoughts exactly.
And so began a 3 month adventure consisting of rheumatology, neurology, and myelomology appointments and evaluations.

And just to make things a tad more exciting…
Prednisone is evil. 


The last few months have been quite blurry. Literally. And figuratively.

One of the many, many new doctors I’ve seen recently said this to me:

“I think 2015 is going to be a better year for you.”

Here’s to hoping. ;)

(more updates to follow soon… :))

Categories Uncategorized

New Clinic Focuses on Why Some Conditions Become Cancer While Others Don’t

New Clinic Focuses on Why Some Conditions Become Cancer While Others Don’t

Insight: News and Information from Dana-Farber

Thousands of people learn each year – usually after a routine blood test – that they have a condition that may develop into a blood cancer such as leukemia, lymphoma or multiple myeloma. The news is often followed by an equally surprising addendum: the condition won’t be treated until it becomes a full-fledged cancer.
Robert Soiffer, MD,

Robert Soiffer, MD, chief of the Division of Hematologic Malignancies at DF/BWCC and co-principal investigator at the BCPC
The lack of treatments for such “precursor conditions” places patients in an awkward limbo: seemingly healthy but waiting for their disease to progress to the point where it’s treatable. Scientists have puzzled over why some people with these conditions go on to develop cancer quickly while others never do, and whether treatment could arrest the disease at the precursor stage.
Advances in genomic technology have given researchers the tools to study the switch from precursor condition to cancer at unprecedented depth. By understanding the fundamental changes that occur in cells’ DNA – and when those changes occur – investigators hope to break the process down to its key components and, ultimately, develop targeted therapies capable of bringing the process to a halt.
To lead that effort at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC), researchers have joined to create the Blood Cancer Prevention of Progression Clinic (BCPC), the first such facility in the United States. Comprised of experts in a variety of hematological (blood) disorders, the clinic has begun collecting tissue samples from patients with precursor conditions and from those with advanced disease. The samples will be analyzed to tease out genomic differences between early- and later-stage disorders, and identify which ones lead the march toward cancer.
“In cancer, we’re always looking to diagnose malignancies in their earliest stages, when they often can be treated successfully,” says Robert Soiffer, MD, chief of the Division of Hematologic Malignancies at DF/BWCC and co-principal investigator at the BCPC. “In many hematologic malignancies and disorders, precursor conditions provide this kind of advance notice. The challenge now is to use this knowledge to our advantage – to learn how to ‘read’ the tissue of patients with precursor conditions to determine which cases are likely to advance and which can benefit from early treatment.”
Precursor conditions take a variety of forms and go by a variety of names.  Early myelodysplastic syndrome, a disease in which the bone marrow fails to make enough healthy blood cells, is often a precursor of acute myeloid leukemia (AML). Myeloproliferative neoplasms, growths that cause the bone marrow to produce too many blood cells, can also lead to AML. Smoldering multiple myeloma, which occurs when abnormal plasma cells arise in the bone marrow, is often a predecessor of multiple myeloma, a bone marrow cancer.
Irene Ghobrial, MD, co-principal investigator at the CBPC

Irene Ghobrial, MD, medical oncologist in the DF/BWCC Jerome Lipper Multiple Myeloma Center, director of the Michele & Stephen Kirsch Laboratory, and co-principal investigator at Dana-Farber’s BCPC
Beyond their common identity as heralds of cancer, precursor conditions differ in how likely they are to progress to cancer, how quickly they will do so, and how they behave from one patient to another. Smoldering myeloma, for example, has a 50 percent chance of progressing to myeloma in two to three years, whereas a condition known as monoclonal gammopathy of undetermined significance has only a one percent chance, annually, of advancing to a cancer such as myeloma, lymphoma, orWaldenstrom’s Macroglobulinemia, says BCPC co-principal investigator Irene Ghobrial, MD, medical oncologist in the DF/BWCC Jerome Lipper Multiple Myeloma Center and director of the Michele & Stephen Kirsch Laboratory at Dana-Farber. She and Soiffer are joined by David Steensma, MD, and Benjamin Ebert, MD, PhD, both of the DF/BWCC Adult Leukemia Program, as the new clinic’s co-principal investigators.
“At this point, we don’t have a reliable way of determining which patients’ conditions are likely to progress and which are likely to remain stable,” Ghobrial remarks. “We’re hoping that research at the BCPC will enable us to better determine who is at greatest risk of progression and are the best candidates for treatment.”

3 Blissful Years

J and I celebrated our third wedding anniversary this past week.

Awwww, I know. Huzzah for us!

Coincidentally, I had to reschedule my 3 month labs and follow-up appointment with Dr. R due to conflicts, and it happened to fall right around our anniversary. I decided since we had plans to be in and around Boston for the day to celebrate our anniversary, it would be logistically logical to schedule my labs and 24 hour urine drop off sometime during that day. So, our Anniversary Day schedule was as follows: 11:30 brunch, 2:00 blood work and 24 hour urine drop off, time around Boston and then a nice dinner at Top of the Hub to watch the sunset.

Best laid plans right? This plan all sounded well and jolly but then I realized…from 11:30-2:00 is quite a bit of time! We’d be carting around the jugs between the time when we left our house, arrived at brunch, ate brunch, and then went on to Dana-Farber.

Our conversation during brunch went something like this, as I started to visualize what might be happening in our hot car:

Do you think the jugs are doing okay in the car?
Do you think there is enough ice packs in the cooler?
Do you think the urine is cold enough?
Do you think we need to bring the jugs in here?

Nothing says romance like discussing jugs of pee over brunch, eh?

Luckily, the jugs were fine. Nice and chilled. And, on a side note, it’s recently come to my attention that not all labs require 24 hour urines to be cold. MD Anderson’s lab for example: no refrigeration necessary. Wow. Well, that must be nice!

Overall, a very nice day to celebrate. Blood work, jug drop off and all.

A little overcast, but we’ll take it. :)

When J and I got married, instead of giving out traditional wedding favors we decided that we wanted to make a donation to something close to our hearts in honor of our wedding guests. We decided that we would donate to Dana-Farber not really because I was a patient there, but because we know many friends and family who have been patients there. We were married in 2011, almost 2 years into my initial “no big deal” MGUS diagnosis. Little did we know how much time we would be spending there during our first few years of our marriage since I was reclassified to SMM before our first wedding anniversary. We’ve continued to make a donation on our anniversary every year since our wedding in 2011.

Wedding Favor <3

That being said, because we are somewhat recurrent “donors” we receive a Dana-Farber magazine called Impact. In the summer edition of Impact there is an article called, Leukemia & Lymphoma Society grants delve deeper into biology of blood cancers, broaden access to clinical trials. This part of the article was really interesting to me:

New funding from the Leukemia & Lymphoma Society 
(LLS), a longtime supporter of Dana-Farber, will allow 
investigators to make inroads into the biology of blood 
cancers and move research findings from the laboratory to 
the clinic to benefit patients around the world. LLS recently 
awarded eight grants to Dana-Farber researchers, totaling 
more than $8.5 million.

Irene Ghobrial, MD, received a five-year Specialized 
Center of Research (SCOR) grant to identify the precursor 
stages of blood cancers and attempt to delay or thwart their 
progression to malignancy. She and her colleagues will 
study how blood cancers evolve over time and how disease 
progression occurs during the transformation from precursor 
states to full-blown cancer. In addition, physicians will see 
patients in the early stages of disease, including acute myeloid 
leukemia (AML), myelodysplastic syndromes (MDS), and 
multiple myeloma (MM), in a new Hematologic Malignancy 
Precursor Clinic.

“Understanding the clonal evolution of certain 
hematological malignancies from early- to late-stage 
disease will pave the way for defining new treatments for 
early-stage blood disorders and provide further insight into 
the treatment of AML and MM,” said LLS Chief Scientific 
Officer Lee Greenberger, PhD.

Sounds like good research to me!

Integrative Therapies

“I wouldn’t give up the traditional treatment for anything, but the alternative treatments I think work with my head as well as my body and that’s an awfully important part of getting well and staying well.” 

Since I am on my mindfulness and holistic living kick, I thought I’d share some information about The Leonard P. Zakim Center for Integrative Therapies. The video above highlights some of the key integrative therapies that are used at that center at Dana-Farber.

I think that quote from the video sums up how I feel about using any integrative therapy. I think being in the “early” stage of myeloma as either an MGUS or SMM patient, it’s important if at all possible to begin using these types of strategies, as a way to reduce stress as well as to prepare for any treatment that may be in the future.

Here is some more  information about myeloma patient Lenny Zakim, named for the Zakim Bridge in Boston as well as the Integrative Therapy Center at Dana-Farber. He passed away in 1999 and was only 46 years old.

The Leonard P. Zakim Center for Integrative Therapies

“The Zakim Center was the dream of its namesake, Lenny Zakim, who as a Dana-Farber patient found comfort and renewal by combining acupuncture, massage, Reiki, and other integrative therapies with his chemotherapy and radiation. Throughout his five-year treatment for multiple myeloma, Zakim worked tirelessly to make integrative therapies available and affordable to all Dana-Farber patients.

Employing the same passion he displayed as an attorney, civil rights activist, and New England Region director of the Anti-Defamation League, he worked with doctors, administrators, and other patient care advocates to make his goal a reality. Just before dying at age 46 in 1999, Zakim was able to announce the establishment of the Zakim Center, which opened at Dana-Farber the next year.”

The Leonard P. Zakim Bunker Hill Memorial Bridge

Slow Improvement

The nerves affected from my brachial neuritis (which was “maybe” the result of a bad, bad, bad flu shot placement) –  the axially and suprascapular nerves, which innervate the deltoid and infra/supraspinatus muscles – have improved to almost normal. Yay!
I was very happy to hear this after I had a repeat EMG back in April. I went back to my doctor and he thought because my affected brachial plexus nerves were almost back to normal, I needed more “aggressive” physical therapy in order to strengthen my muscles and stabilize my shoulder. This aggressive PT has consisted of a lot of massage, a lot of crawling, and a lot of strengthening exercises with stretchy bands. My new physical therapist has been very helpful- she seems to understand what’s going on within my shoulder much more than my previous therapists, and has given me a lot of exercises that are within a pain free range, as well as massage and stretching techniques to help reduce pain.

Crawling around… noticing so much cat hair…

When I went back to my doctor after being with this new physical therapist for about seven weeks, he felt it necessary to order some imaging to determine if the pain and clicking I am still experiencing is more than just impingement and instability.  My new physical therapist had actually suspected a labral tear upon my initial evaluation. A labral tear would be unusual because I have not had a traumatic injury to my shoulder (unless you count the placement of the shot!). I had an MRI in November which showed a contusion on my humeral head, bursitis, tendinitis and fluid. However, the study was not with contrast, which is necessary to view any issues with the labrum.

That being said, I had an MR arthrogram with intra-articular contrast and MRI yesterday at New England Baptist Hospital. I was very apprehensive about having this test for a couple of reasons. The first reason being that intra-articular means the contrast is injected directly into the joint under the surveillance of a special x-ray machine called a fluoroscopy. I am very weary of having anything injected into my shoulder since last September. :/ I have also read that in some individuals, imaging contrast has been traced as the preciptating factor prior to the onset of a brachial neuritis episode. AND, as I’ve written about previously, there are studies that have shown that gadolinium may cause myeloma cells to proliferate. Yikes.

Never again!
That being said, I contacted my neurologist who said, “Recurrences are unusual and not regional. So work specifically on the shoulder does not carry a higher risk than injections somewhere else.” I also contacted Dr. R who just told me to ensure hydration and make sure the radiology team knew I was a myeloma patient.
So, the test yesterday went fine. The radiologist who performed the MR arthrogram was great. He listened to my whole shoulder saga and was very reassuring that he would take it slow and be careful, and that he’s performed more than 10,000 arthrograms. He used  “fluoroscopy” which is a special type of x-ray to view my shoulder and to ensure where the contrast is going. To be honest, when he was prepping my shoulder area he said to look away so I didn’t inhale the fumes and I never looked back except to briefly see the screen. The procedure was a few lidocaine injections (short stings…nothing like the super bee sting bone marrow biopsy lidocaine injections) and then they injected the contrast. It really didn’t hurt at all. I was shocked when he said he was finished.

After the arthrogram, I had to go to the MRI department for the actual MRI. The hilarious part was they wouldn’t let me walk there by myself. At New England Baptist radiology is at a lower level and MRI is above and across to the opposite side of the hospital. So I had to be pushed in a wheelchair (wearing my lovely hospital gown and robe) through the waiting room, up the elevator, down the hall, through the lobby area  and into the MRI waiting room! Anyway, then the MRI was just a regular MRI that probably lasted about 30-45 minutes.

So far no throbbing pain in my shoulder! Woohooo! 

Keep it together nerves.