Uma Pequena Notícia Boa

Several weeks ago we submitted blood samples for genetic testing. Based on my family tree and medical history they tested me for BRCA 1/2 & p53 mutation, both which would shed some light on the origin of my sarcoma.

Today we received the results and everything was negative! Although this doesn't explain the presence of my sarcoma, this is great news and means that I'm not at any elevated risk for developing any additional sarcomas or cancers for that matter. I have the same cancer risks as anyone else. It also means my parents/grandparents are off the hook for passing down bad genes.

As far as why I developed a sarcoma, my geneticist explained that either I just have bad luck or I developed the tumor based on environmental factors. Which brings me to my initial hypothesis: Diet Coke, McDonalds (minus their vanilla cones), artificial sugars and microwaves give you cancer! Watch Out!

It's Still Chemo

The delivery of Yondelis is much better than AIM; a simple 24-hour infusion over a 72-hour hospital stay where someone is taking my vitals every 4-hours. Sleeping in my own bed is a bonus and I feel fine during the delivery of the drug (during the infusion) which makes me feel like I gained an extra day. This is all true.

The recovery of Yondelis is much the same as AIM. Even though it's less toxic, I get the same nausea and fatigue I got after AIM. I guess it's still chemotherapy. As with AIM, I'm sure I'll get more used to the side effects of Yondelis and the next rounds can only get better.

Three days out and I'm starting to tailor down my nausea meds which is an improvement over the 5-6 days with AIM. If this works out, it'll mean I can get two good weeks of being normal and one week off for medical leave; thus gaining an extra week. But before I get ahead of myself, I will rest and keep you updated.

Due to the AIM washout waiting period / chemo date shuffle, I have the next three weekends to enjoy chemo free. Mom, Dad and the sisters will be in town this week which will be a good kickoff to this little break.

Beginning the Yondelis Clinical Trial

Yondelis is a pretty cool drug. It's based on a derivative of the "Sea Squirt" marine organism found in the reefs along the Caribbean Coast and in the Mediterranean. It's been used in human trials since 1996 and is approved in more than 150 countries worldwide, though only available through clinical trials in the US. Here's a link to a neat video about how the drug works: How Yondelis Works.

It's administered outpatient (at home) through a 24-hour infusion using an electric pump. What this means for me is that I get to carry around a man-bag for the next 24 hours. The picture above is the contents of my man bag. The littler critter was a gift from one of the nurses at the hospital. He looks over my chemo.

Starting my first round of Yondelis turned into an all day affair. We entered the hospital at 10:00 am and after registerting at the outpatient infusion center, meeting my new nurse, pump training, etc it wasn't until 3:00 pm that I was hooked up to the pump and receiving the chemo treatment. Next time should go smoother.

And then I was told to go home and enjoy the rest of the day!

Just like that, I was off on my way, receiving chemo as I went on with my day. In the evening we went to a Thai restaurant for dinner with the family, both Mom and Dad Guyer are in town. I think I can get used to this!

Round 4 Scan Results

Last Monday, after finishing the remainder of the MRI scans in the morning, we met with the oncology team to discuss the results, and it took a good number of days to accept their findings: there is still no significant disease progression; however the tumors / lesions haven't shrunk as expected. Again, this was not the news we were expecting, after all I'm feeling much better than when I was first diagnosed, but I guess we'll take it.

These results struck conversation between the various departments of my oncology team and everyone agreed that systemic control of the disease using medicine (chemo) is still the best path to manage the disease. Surgery would delay the chemotherapy treatment while we'd have to wait for my body to heal and radiation could complicate the later surgical resection of the disease.

The conversation turns to a discussion of which chemotherapy regime to continue. The current regime of AIM (adriamycin-ifosfamide-mesna) has served me well. It's most notably gotten me out of a wheelchair; however the AIM regime has done little to actually shrink the tumors and the various cancer markers show that the effectiveness of the drug is starting to plateau. Additionally, the AIM regime is no walk in the park and is very toxic to the body. I could only get two more rounds of AIM before the drug starts to adversely effect my heart.

As a second line defense there's a new drug under clinical trial called Yondelis which has shown to be very promising at combating STS (soft tissue sarcomas) and even more promising for my M/LS (myxoid liposarcoma). It's an experimental drug in the US but approved in more than 150 countries worldwide where it's probably even used as a first line defense. Yondelis is also about a 1/10th the toxicity of AIM and currently there is no cap on how many times I could receive the treatment. We're given the consent form for the clinical trial and are sent home to make a decision between continuing AIM or starting Yondelis.

It must be understood that Tuesday (the next day) I was scheduled to go into the hospital to start my 5th round of AIM. So a decision had to be made fast.

The next three days began an emotional roller coaster, researching this new clinical trial and deciding which treatment to continue. After a lot of research and discussion we were leaning towards Yondelis, ditching the 60 year old chemotherapy drugs for the newer modern medicine, swinging to the fences to find a cure. (*** If you were wondering where the sarcoma donation dollars are spend, Dana Farber has been instrumental in brining Yondelis to the US and this is just one small piece to the other research and clinical trials they're doing.)

Tuesday morning the hospital called and informed us that I wouldn't be able to start my scheduled AIM treatment until later in the week, possibly Friday or Saturday. We took this as a good sign as it allowed us a little more time to get more opinions and to make a final decision. Meanwhile we started the screening process to enter the Yondelis clinical trial.

Tuesday evening I received a call from my doctor stating that I wasn't eligible for the clinical trial due to "no progression of the tumor site." Additionally we were told that we would have to continue the AIM regiment as an outpatient instead of inpatient due to an unforeseen influx of patients to the hospital. These two statement weren't taken lightly. 1.) We were leaning towards this new medicine hoping and thinking that it could have a chance to kill the tumor. 2.) AIM is hard enough to do inpatient; outpatient would require dragging myself back and forth to the hospital for three days.

What were we to do? We really only had once choice now: continue AIM as an outpatient. On the bright side I'd get to sleep in my bed every night without being woken up every four hours, and I wouldn't have to be subjected to hospital food for three days. I tried to convince myself that outpatient may have some serious advantages. Additionally I could start my treatment Wednesday (tomorrow) instead of waiting till the weekend.

Wednesday morning we woke up, packed a day bag to take to the hospital and headed over to my doctor's office to begin Round 5 of AIM as an outpatient. As an outpatient the first thing you have to do is to meet with your doctor to write the orders and make sure your blood counts have bounced back high enough to handle the next round of chemo. At the meeting, after talking through the past couple day's roller coaster ride, we asked to see the final reads on the MRI scans from Monday (it takes up to 24 hours to get a final radiology read on a scan so a portion of the reports reviewed at Monday's meeting with the oncology team were only preliminary reads).

And there we found it: "Progression of osseous metastatic involvement." Before you get the wrong impression, it's really not that bad and our second opinion said that the scan might have been slightly over-read. Again, not the news you ever want to hear but just enough bad news to get me in the clinical trial, which we really do feel has a good chance at killing this disease.

We left the hospital and spent that and the next day (Thursday) celebrating our small win. Yondelis starts on tomorrow which works well because I would have needed to wait until Friday anyway for the AIM to washout; so no time wasted!

Kol Nidre Mochaccinos?

On the "day of atonement" I spent the majority of the day in CT and MRI machines! It sounds eerie and generally unappealing, but I had the foresight to bring entertainment: adavan and stand up comedy CDs. Whereas during my last set of scans I spent my time counting sheep and singing songs to myself, this time I listened to Chris Rock, Dane Cook and Dennis Leary, trying my hardest to suppress laughter so that I didn't move my body.

Unfortunately they only scheduled me for five hours of scans instead of the required eight hours of scans so I have to return on Monday before visiting with my oncology team to get an MRI of my brain and C-spine. We're very anxious to find out the results of the scans, and I will post an update on Monday evening.

The picture above is one of me drinking Mochaccino flavored contrast for the CT Scan. I think I'll stick with Starbuck's version.

Beware of the Zebras!

After my diagnosis and intermittently since I was diagnosed I sometimes lie in bed at night and think to myself, "Why wasn't this caught earlier?" Since we moved to Boston I've been regularly visiting my PCP doctors and thinking back on the events leading up to the diagnosis it seems clear that something was wrong.

My "medical monitoring" started in December 2009 after Autumn and I drove across the country and I was diagnosed with a DVT in my left calf. At that time I was seeing my PCP doctors twice a month which eventually turned into a monthly visit. In the beginning the DVT diagnosis precipitated by a prolonged cross country drive made sense; however as the weeks and months passed on something wasn't right.

I remember going into the doctor's office, nearing tears, complaining about pains in my leg and being shooed out of the office with another pain medicine prescription. I remember telling the doctors that I don't want pain medicines, I just want my leg to be cured. Every visit ended the same way, "Let's check back in a month and see how you feel then."

I tried wearing compression stockings on my left leg to alleviate the swelling pains from the DVT and shortly after I returned to the doctor's office complaining that I couldn't move my great toe and could barely move the other toes. This turned into the hot topic of discussion at my monthly appointments and every month we'd monitor the movement of my toes. They never really moved but I got used to them and stopped complaining. "We'll see you in a month."

At one point Autumn suggested I get a scan of my legs; I was having pain in my DVT leg and my right knee had started to hurt (attributed to my compensated stride). A scan of my knee seemed to be a reasonable request especially since I think I had injured it over a year ago; however, for the scan of my DVT leg we needed a second opinion. I remember three doctors gathering around me in an examination room looking at my leg and my immobile big toe. I remember hearing them say, "That's strange. I've never seen that before." I got approval for the MRI of my knee but the DVT leg received it's standard treatment: "Let's see you in a month."

Six months later I was diagnosed with a myxoid liposarcoma in my DVT leg.

Last week I decided I wanted to talk to my PCP doctors and tell them about my nights lying awake in bed and how I was feeling. I'm a strong believer of confronting your feelings head on and approaching people directly. My psychotherapist thought I was a masochist. I don't really know what I wanted in meeting with my PCP doctors. Maybe I wanted them to say that they were wrong. Maybe I wanted an apology.

But really I wanted to warn them about zebras for the next patient. There's a saying, "When you hear horse hooves, you look for horses not zebras." With the DVT diagnosis all my complications seemed to have a source. We never questioned an alternative source; it all made sense, but clearly this was a zebra.

The appointment was this afternoon. The meeting was difficult and I started crying the second I saw my PCP doctors. I told them everything I was feeling and by the end of my story they were fighting back tears as well. One of the doctors put his arm on my shoulder and told me how very sorry he was and we ended our meeting with sentimental hugs.

Even though I wanted to see them so that I felt better, I think they needed to see me so that they could feel better. Just as Autumn, my Dad and I have beat ourselves up for not catching this earlier, they too were tormented by the same feelings: scouring their notes and speaking to their colleagues about the situation. They thanked me for coming in and talking to them about my feelings.

I'm glad I went to talk to my doctors today. I think we all needed it.

For everyone else reading, beware of zebras! Listen to your body and if your not getting what you need, get that third, forth, and fifth opinion. Don't wait "another month" till you really have a problem.

The Poop Heard Round the World

Warning: Please stop reading if you don't want to know!

They all say cancer doesn't kill you; it's the side effects of cancer and treatments that lead to your ultimate demise. For me this almost came in the form of a poo.

A side effect of chemotherapy is constipation and no matter how many pills or drinks I take to manage "the mush and the push," for me chemotherapy means a standstill of my bowel movements during my treatments. Thank g-d I'm on a three day chemotherapy schedule instead of a five day schedule!

Once I arrive home after a treatment, mind you I'm drinking Metamucil for hydration and eating Colace like they're tic-tacs, there's always the anticipating fear of confronting what I've made over the past week.

During round 4 I made a mean turd: hard as a rock, edges sharp as daggers and a girth that would make my father proud! As this demon passed through Master Sphincter he tore him right open (medical term: anal fissure).

So there you have it! This is why I haven't been retuning calls or emails. Combined with the inability to heal due to the chemotherapy knocking down my blood counts, I spent the majority of the weekend on the couch or in a sitz bath or applying a new ointment in hopes to relieve this extremely painful experience.

Finally today I got some relief and was able to go into the office!! It seems my blood counts are on their way up again and hopefully I can put this all behind me; no pun intended.

L'Shana Tova!

A Happy New Year's wish to all and hopes that this next year will bring more health and happiness than the previous year!

I've been feeling okay the past couple days: walking, getting out of the house, eating well. Today I was able to return to work which is always nice to talk to my friends and return to my life :) And after work Autumn and I went sailing! The evening started as a green flag day (light winds) but as we launched our boat the yacht club raised the red flag (heavy winds). I think I got a good scare out of Autumn but she was giggling by the end of our journey.

In a little under a week and a half I'll get rescans of my body to compare with the original scans, pre-debacle. These scans will determine what to do after Round 6: do nothing, more chemotherapy, radiation or surgery (in no particular order). Prior to Round 5 on 9/20 I'll meet with an oncology surgeon and radiologist to get the opinions on the matter.

Until then, it's the waiting game!

Saturday's Pile of Bricks

I believe the second day out of chemotherapy is the worst day. I was shocked at how I felt Thursday and Friday, but everything came to a halt on Saturday.

The entire day I felt like I was starring in a zombie movie, sluggishly dragging my body around town drooling on the people I passed. Even so, I managed to walk a great distance throughout the day (2-3 miles) and must have drooled on at least 200 onlookers.

For dinner the family went to Chinatown. There's something in Hot & Sour soup that cuts right through the chemo. It's really great and I swear there must be a correlation; maybe it's those weird stringy mushrooms or maybe it's the extra scoops of spicy paste that I add. Whatever it is, it works!

$15,000 in Research Funding, Earl Threatens Holiday Weekend!

Arriving home early after completing Round 4 and checking my blog to see that we have surpassed $15,000 in research funding, I couldn't be happier. Thank you everyone for your most generous support in fighting this disease. I've been speaking to the recipients of our funds and will have annual reports (email if interested) and will post an update on some of their more specific accomplishments. I can't thank you all enough!

Headlines boast, "Quickest Round Ever Recorded!"

I got admitted at 10:30 am Tuesday and discharged at 2:30 pm Thursday. This is in comparison to the prior round of being admitted at 8:00 pm Wednesday and discharged at 11:30 pm Friday evening. I can't believe it's already over and I don't really know what to do with myself. This'll make for some good recovery time before this coming holiday weekend!

Dad Guyer is supposed to come in town provided that Hurricane Earl behaves!

Above is a water color picture I painted from my room at MGH. It overlooks the Charles River, specifically Longfellow Bridge.