I have had three treatments of the TDM1 now, and this week was our first indication of whether it's doing its job or not. And I am happy to report that it is!
My tumor markers were taken this week, just a few days before my third treatment. I now have to go to the hospital a few days before treatment to get my blood drawn, since they need to make sure my liver enzyme levels are good, and that's not something that can be measured with a simple finger-stick before treatment.
So when I came for treatment on Friday, Eugenie (Dr. Sara's nurse practitioner) came by my chair and told us the good news that my tumor markers are down! And it was clear that she and Dr. Sara were just as excited to hear my results as I was. She said Dr. Sara had emailed her earlier saying "LOOK AT EMILY'S TUMOR MARKERS!" (complete with all capital letters). It feels good to know how much Dr. Sara and Eugenie care.
I'm still going pretty strong on the minimal side effects - as I mentioned, after the first treatment I had some achy-ness. I had that again after the second treatment, but it was less intense (not that it was even that bad the first time) and for a shorter duration. So far this time, I had a little soreness in my lower back the day after treatment, but frankly, I think that was bothering me before so I'm not even sure it's related to treatment at all. I feel fine today, two days post-treatment, and even went running this morning.
And, my hair is definitely coming back in! On April 13th, I had what I like to call my "troll hair" - meaning the wispy, brittle, uneven "chemo hair" I had - shaved off. I did this to get rid of the crappy chemo hair and make way for the new healthy hair to come in. I did the same thing last time I knew my hair would be coming back, and it worked out well.
My new hair feels like it's coming in fast - in reality, it's probably the standard 1/4" per month rate that hair normally grows, but it always feels faster when it's this short since it's that much more noticeable. Last weekend my Dad even swore that I had more hair on Sunday than I did on Friday!
I'm still wearing the wigs most of the time, since it's still a little too short for comfort. My goal is to have it long enough that you can't see any scalp (which I'm pretty much there now), and long enough that it's not sticking straight up, but that I can have it lay flat on top (even if it takes some product to get there). I still have a bit of a ways to go to get there. I'm hoping maybe by Memorial Day it will be long enough that I can ditch the wigs. It would be coming full circle, since it was Memorial Day last year that I had just started losing it again, and shaved it off since it was getting really annoying.
It will be nice to have short hair for the summer. And, there was a segment on Good Morning America just this week about how pixie haircuts are "in," so I will be right on trend!
Sunday, May 12, 2013
Sunday, April 7, 2013
Bone Biopsy Results, Part Two
When last we left off, I had received the results of my bone biopsy, but my next treatment was still TBD. The uncertainty was difficult, but as Dr. Sara promised (and he's never broken a promise to me yet), by the time of my next treatment, he had a game plan in place.
He had consulted with his colleagues at Sloan Kettering, and they agreed that the new drug TDM-1 was the best option for me. I would also be taken off all the other chemo I had been on previously, so I will only be receiving the TDM-1.
This drug had JUST hit the market and in fact was so new that I couldn't get treated that day since insurance hadn't approved it yet. Eugenie, Dr. Sara's nurse practitioner, who was working on getting all the approvals, said they practically had to get the White House to approve it! I would be the first person receiving TDM-1 at Roosevelt Hospital.
To give insurance time for all the approvals, I rescheduled treatment for the following week. Although I was supposed to go in the morning as usual, the day before treatment Eugenie called me to tell me to come in the afternoon since the drug wouldn't be arriving at the hospital until noon. I imagined the drug arriving like the Stanley Cup, complete with a white-gloved escort!
Even when I arrived at the hospital around 1pm, the drug "was in the building" but hadn't yet arrived at the oncology pharmacy. But luckily, I didn't have to wait too long.
Since this was obviously my first time getting this drug, it was administered slowly over a 90-minute infusion. Future treatments will be faster. Of course, as is the case with any new drug, there was a risk of a reaction (like what happened when I got the Pertuzamab the first time), but luckily I was reaction-free this time.
Like the Herceptin and the Pertuzamab, this drug has minimal side effects. I will have to keep getting MUGA scans to monitor my heart, but luckily every MUGA scan I've ever had has been normal (including one just a few days before my first TDM-1 treatment). I did notice some achy-ness in the days following treatment. It could have been a side effect, but it's hard to know for sure. I guess I have to wait and see if it happens again. Either way, it wasn't too bad, and is definitely something I can live with.
The best news of all is that I WILL BE GETTING MY HAIR BACK!!! This drug does not cause hair loss, so almost a year since I started losing it again, I'll be getting it back. It will be nice to have real hair again and not have to rely on wigs all the time - I am really looking forward to that!
One other new development that I think I forgot to mention last time - I am also starting to receive a drug called Xgeva, which is given to help my bones build back up from the tumors. It's not a chemo - in fact it's more typically given to osteoporosis patients - and it doesn't really have any side efffects either. I will get this shot once a month, and had the first one when I got my bone biopsy results. No side effects to report!
So now, I am just hoping and praying that the TDM-1 lives up to its hype and does its job. Time will tell. Dr. Sara was also encouraged by some additional news he got from his colleagues at Sloan - they told him they are working on the "next generation" of the TDM-1 drug, and so it is good to know that that is also a possibility down the road should I need it.
For now, I'm going to send positive vibes to the TDM-1 running through my body, and will be staying on the lookout for healthy new hair to start growing back soon!
Sunday, March 17, 2013
Bone Biopsy and Results, Part One
For the fourth time in my cancer career, I reported to the 5th floor Ambulatory Surgery center of Roosevelt Hospital on the morning of my bone biopsy. This is the same place I had to go when I had my liver biopsy and my two surgeries, so I'm pretty familiar with the place by now.
Luckily, unlike those other times, my appointment was not at the crack of dawn, but rather a much more reasonable 10am. Although, I learned that the price for getting to sleep in a bit meant that I was that much more hungry, since I was not allowed to eat anything after midnight. Interestingly enough, when we checked in my Dad was remanded to the hallway to finish his coffee, as they don't allow any food or drink in the waiting room. The reason for this is to not flaunt food and drink in front of the patients who can't have any! I thought that was pretty thoughtful and considerate, though it did mean my Dad had to chug his coffee in the hall (I guess we didn't remember everything about Ambulatory Surgery!).
We didn't have to wait long before they called me to the back. As usual, they asked me a bunch of questions (like why was I there, when was the last time I ate, etc.) and then gave me a hospital gown and locker to store my stuff during my procedure. Then my Dad was allowed to come back. Once again, we didn't have to wait too long before they were ready for me.
I was wheeled down to the 4th floor, where the procedure would take place, and a nurse came over to put in an IV. She tried to put it in my hand, since I would be lying on my stomach for the procedure, which would theoretically make a port IV difficult, but the vein blew (hate when that happens). So, she left to ask the doctor if a port IV would be OK and luckily he said yes (whew).
Once my IV was all set up, a fellow who works with the doctor came over to explain the procedure. They would be using CT scans to guide a needle into a tumor in my spine to extract a small piece of it for analysis. I would be given a sedative to relax me, but not put me out (though she said some people do fall asleep). I would also be given a local anasthetic. She also warned me that the needle itself makes a noise - kind of like a dental drill - since it would be going into bone, and not to be alarmed by the sound.
While we waited for me to be wheeled into the procedure room, my Dad and I chatted about - of all things - Easter candy. You see, I gave up chocolate for Lent, and I really, really miss it. And considering that it was around noon by this time, meaning I hadn't eaten in about 15 hours, I had candy on the brain. So we discussed what my parents would be purchasing for Easter candy this year and concluded that it would include all of my favorites, especially peanut butter eggs, but also a chocolate bunny, Cadbury eggs, Peeps, and jellybeans. (And yes, even though I'm almost 35 years old, my parents still do my Easter basket every year!)
After I got wheeled into the procedure room, Dr. Friedman came over to talk to me as well. I told him that I remembered Dr. Sara saying that they might have to avoid the area of my spine that had radiation, since sometimes that can affect results. Dr. Friedman said that shouldn't be a problem, but just to be safe, he called Dr. Sara to discuss it before starting the procedure. And Dr. Sara agreed that the area they were planning to go in was the best place. I liked that they listened to my concern, and took the extra step to double check with Dr. Sara before doing anything.
Anyway, I was then given Versed and Fentanyl which relaxed me. I didn't fall asleep during the procedure, so I did hear the "drill". But it didn't really bother me. It didn't hurt at all, except for a burning sensation I felt a couple times as the needle was going in. I mentioned it but they said this was normal too, so nothing to worry about.
I think the whole procedure took about 30 minutes or so, at which point the doctor said they got a good sample, and I was wheeled back out. I was still very sleepy, but I started to perk up after the drugs started wearing off.
I was then wheeled back up to the 5th floor, where I could finally eat! They actually had a hospital tray for me with a full meal, but it wasn't vegetarian and didn't really look very appetizing, so I just had some graham crackers and ginger ale.
I was discharged about an hour later, and then I could finally have a real meal. We went to a nearby diner where I had blueberry pancakes which tasted SO GOOD!
Over the next couple days, I had a slight soreness in my lower back - like I pulled a muscle - but other than that I had no lasting effects from the procedure. It was pretty easy, all in all.
The following Monday, my parents and I went to Dr. Sara's office to find out the results. Now, I did not really feel apprehensive about getting these test results - after all, we already knew that it was cancer of course, and we already knew that it was increasing in the bone; it was just a matter of whether or not the cancer was hormone receptive, which would determine the type of treatment.
Dr. Sara told us that the test results showed that the cancer was actually NOT hormone receptive. It is HER2 receptor positive, but not hormone receptor positive. This means that determining treatment is more complicated. If the cancer was hormone receptive, the answer would have been clear - add a hormone treatment to my current regimen. But that solution will clearly not work, so what do we do now?
Dr. Sara said that there is no clear answer on how to treat this, so he is consulting with other oncologists to get additional opinions and ideas. By the time I have my next chemo treatment (this coming Thursday), he will have a plan in place.
You see, there are three known characteristics of breast cancer receptors - HER2 and the two hormones estrogen and progesterone. But, there are other types of receptors which have not been discovered yet. And it's one of these receptors that is causing the cancer in my bone to respond differently from the cancer in my liver, which is why it's so difficult to determine treatment.
Dr. Sara said one possibility he is considering is putting me on TDM1, which is the latest "blockbuster" breast cancer drug. It actually has just been approved by the FDA, and will be on the market within a week or so. It is a HER2 drug, so it's possible the cancer in the bone might be more receptive to this new drug, since it's not responding to the Herceptin and Pertuzamab. Dr. Sara is consulting with the team at Memorial Sloan Kettering, as they did the clinical trials for TDM1, so they know it well and can tell Dr. Sara if they think it is a viable option for me. The team at Sloan actually already knows about my case, since Dr. Sara had tried to get me into one of their clinical trials for this drug awhile back.
Another option might be to just keep me on the same regimen that I am on, and repeat my PET scan in 2 months, versus the usual 4 months. Dr. Sara said that sometimes, there can be a "delayed response" in certain areas, so it's possible that the cancer in the bone is just being slow and will eventually respond to the drugs I'm currently on.
The bottom line is, we just don't know yet. And the not knowing has hit me a little harder than I expected it too. As I said, I was not really apprehensive about getting these results, but I came away from it a little upset. It was difficult to hear that there is no clear answer to my treatment. And while I have full confidence that Dr. Sara will come up with the best solution and there will certainly be a plan when I go for chemo this week, the not knowing is hard.
It's not that I'm worried that the treatment will be more demanding physically or anything like that. It's just that the fact that we don't know what is causing this cancer to not respond to the current regimen means that there is a greater chance whatever treatment we do choose may not work. Despite this fact, I think I will feel a little better when I know what the plan is, so I am looking forward to Thursday, and to knowing more.
Until then...
Sunday, March 3, 2013
Whac-A-Mole
Well, this past week was a scan week... I had my latest PET scan on Tuesday, and got the results on Thursday. As has become the "norm," the results were mixed once again.
The good news is that the cancer in my liver is "markedly" improved. Wahoo! The areas in the lymph nodes in my neck are also improved, which Dr. Sara already knew from his clinical exams.
However, there are some cancerous areas in lymph nodes in my chest and abdomen, as well as a few places on my spine, which are increasing.
So what does this mean? Well, we know that the chemo regimen I am currently on (Herceptin, Pertuzamab, Taxotere) is working - at least where the liver is concerned. So, Dr. Sara does not want to completely change my treatment.
However, obviously, something needs to be done about those increasing areas. As you may remember, last time my treatment changed, Dr. Sara's theory was that the increasing cancer in the liver was likely HER-2 positive, meaning drugs that fight the HER-2 protein (like Herceptin and Pertuzamab) would be effective against it. It seems that Dr. Sara's theory was correct, since the cancer in the liver is responding to this treatment.
Now, his theory is that perhaps the cancer that is not responding to this treatment might be hormone positive, since when I had my first biopsy back when I was diagnosed, my cancer was both HER-2 and estrogen positive. It's possible that the cancer in my liver is more HER-2 positive and the cancer in the other areas is more hormone positive.
With breast cancer especially, the cells can act differently within the same body, even though it's all still breast cancer. He used the analogy that my Mom, Dad and I are all part of the same family, but we are still different. This "acting differently within the same body" thing is more often seen with breast cancer than with other types of cancer, and obviously makes treatment more complicated.
If Dr. Sara's theory is correct, then adding a hormone treatment to my current regimen should help fight the increasing spots. However, he doesn't want to just go by trial and error - he would rather know for sure what we are a dealing with rather than just throw something to the wall to see if it sticks.
To that end, I am going to have a bone biopsy this week. They will stick a needle in my spine to extract a tiny piece of the tumor which will be analyzed to see what it's made of, and if it is indeed hormone positive. Then, Dr. Sara will make a decision on treatment.
I'm scheduled to have the bone biopsy at the hospital on Tuesday. It will be similar to the liver biopsy I had three years ago, except this time the needle will go in my spine instead of my liver. In fact, the same doctor who did my liver biopsy will also do this procedure. I will get a local anesthetic, and probably also some kind of sedative so it should not hurt (hopefully!).
I will get the results the following Monday, and that's when I'll find out what my treatment moving forward will be. I have been on a hormone treatment before - namely Tamoxifen, which is a daily pill that luckily did not cause any side effects for me. However, I imagine there are other types of hormone treatments as well and so we'll just have to wait until next Monday to know what it will be (if it is indeed a hormone treatment that is added).
This experience of test results that are "some areas up, some areas down" has become a pattern, and it is definitely frustrating. My Dad calls it Whac-a-Mole because it seems that as soon as we knock down one area, another pops up. While I am very thankful that my test results continue to not be "catastrophic," just once I'd like to have some all-around positive results.
Maybe this new treatment will do the trick and next time my wish will come true!
Monday, January 21, 2013
Tumor Markers
Just a quick post with some good news... On Friday, I had treatment #3 of the latest chemo regimen (Herceptin, Pertuzamab, Taxotere) and got some good news - my tumor markers are DOWN! And not just down a little, they are down a lot - from 700+ to around 200.
And these results came in after only one treatment - even Dr. Sara says this is "big," and if you've been following along you already know that Dr. Sara does not sugarcoat anything!
They even showed me the graph - it looks like a mountain. You can see a sharp incline in early December before my first treatment of the new regimen, and then it's a pretty steep drop after treatment #1.
Obviously this is very good news, as it tells us that the chemo is doing it's job. In addition, during this week's clinical exam, Dr. Sara could barely feel the lymph nodes in my neck, and he also could not feel anything in my abdomen/liver (unlike last time). Further proof this new regimen is looking pretty effective.
Of course, while all of this is very encouraging, it's also important not to jump to conclusions - this certainly doesn't mean that I am cured, or will be cured, and it doesn't mean that this new chemo is going to work forever. All it means is that it's working right now, which is amazing and good enough for me right now!
It's even better because this chemo continues to give me no real problems on the side effect front. In fact, the pre-meds I have to take to ward off side effects are giving me more trouble than the chemo itself. I have to take Dexamethasone twice a day the day before, the day of, and the day after chemo. It tends to make my mouth taste funny, and it's also been affecting my sleep.
I told Dr. Sara about this and he said that next time, I get a 50% off Spring sale - meaning I only have to take half of the dose I normally take. As long as my feet don't swell (one of the side effects it wards off), I will be able to continue on the half dose and that should alleviate the mouth/sleep issues.
So all in all, it was a very good week at chemo! Until next time...
Sunday, January 6, 2013
Cancerversary
Happy New Year! This year I resolve to be a better blogger. I hate, hate, hate it when I end up making promises I can't keep, so I hereby resolve to blog at least once a month. There, now that it's out in the universe, I will make it happen!
For me, January brings more than cold, dreary weather; a re-dedication to healthy eating and fitness plans; and NFL playoffs (go Packers!). It also brings my "Cancerversary," i.e. the anniversary of the day I was first diagnosed. Some people refer to their "Cancerversary" as the day they completed treatment or were declared cancer-free, but since I don't and frankly aren't likely to have one of those days, at least not anytime soon, I'm sticking with the first definition.
On January 14th, it will be three years to the day that I found out I had breast cancer. I think back to that day and how my mind was reeling with the unknown. Even though in my calmer moments I knew that statistically, most people survived breast cancer just fine, I couldn't help thinking things like "I hope I'm still here next Christmas." Well, I did make it to that Christmas, and the one after that, and the one after that.
And while I still have advanced disease and am still a regular at the Oncology ward at Roosevelt Hospital, I am also still thriving. I still work full-time, travel, and live a full life, despite my diagnosis.
Back on January 14, 2010, I could not have imagined that would all be true despite my dire diagnosis. So for that, I am very, very thankful. I'm not really sure how I feel about the word "Cancerversary," because is the day you receive devastating news really something to put a celebratory notion to? But if I think about where I am now, versus where I saw myself at this point three years ago, then yeah - that is something to celebrate!
When we last left off, I had started on the new chemo regimen of Avastin and Abraxane. All went fine with that, until my next scans came up in August. Mixed results once again - some cancerous areas in my body were increasing, while others were decreasing. And no, there was still no way to tell quantitatively if there was more or less cancer in my body.
So, Dr. Sara changed my treatment once again. This time, I was put on Adriamycin, Cytoxan and 5-FU. The minute I heard "Adriamycin" I thought "The Red Devil." You see, I'd heard about this drug. It's been around for a long time so I've read about it in various cancer articles and books. It gets its nickname from its red color (it even turns your pee orange - party trick!), but also because of it's brutal side effects.
Luckily, Dr. Sara assured me that it's not really considered "The Red Devil" anymore because anti-nausea drugs have come such a long way that they can now effectively combat the side effects.
And, surprise, surprise, Dr. Sara was right. I did have some occassional chemo-related fatigue and appetite issues (after one treatment, I only wanted to drink iced tea; after another, it was birch beer), but all in all, it was not bad at all.
Dr. Sara could tell the treatment was doing its job because the lymph nodes in my neck would either stay the same or decrease when he examined them every three weeks I was there for treatment.
But alas, you can't REALLY know what's going on until you get scanned again. My next scan was scheduled for October 30th, but you may have heard about this little incident we had here called Hurricane Sandy. As it turned out that crane that was dangling from a building in NYC during the storm that was all over the news was just a couple blocks from the radiology place! Not to mention the fact that I was stranded in my apartment in Hoboken for 2 days until the flood waters on my street receded and I could flee to Mom and Dad's, where I was a refugee for a week and a half.
I was determined not to miss treatment though, so even though it took us FOUR HOURS to get to the hospital on the Thursday after the storm (when it should only take about an hour and a half from my parents' house), we made it.
But of course, that scan did not happen as planned, so instead Dr. Sara said we would go one more cycle, and then get scanned after Thanksgiving.
Side note - they have changed the guidelines for the no carb, no sugar diet I need to follow the day before the scan... it's even more restrictive now. So I had to change the PET scan diet routine I had gotten used to - it's all about cheese-less veggie omelets and salad now. No fruit whatsoever, not even apples and blackberries which used to be OK; no cheese; and no yogurt which also used to be allowed. Ugh; at least it's only one day every four months or so!
This latest scan showed results much like the previous two - mixed. The cancer in all areas of my body except the liver, including my lymph nodes, spine, abdomen, were all decreased or unchanged. But, there are new lesions in the liver, so another change to treatment was in order.
Of course, the liver is the only vital organ the cancer is in, so it's disheartening that that is the one place the cancer was increasing. But Dr. Sara reminded me that the liver is one of the most resilient organs in the body, and he assured me that he didn't expect me to start experiencing any effects from the cancer itself, which was good news.
With most cancers, chemo tends to treat all the cancer in the body equally, as it's a systemic treatment. But sometimes with breast cancer specifically, they see cases like mine where some areas can be up while others are down.
Now, I have not been on Herceptin, or any HER-2 drug in about a year, so Dr. Sara's theory is that perhaps the cancer in the liver contains more HER-2 receptors than the cancer in the other areas of my body, which would explain why my most recent traditional old-school chemo regimen wasn't being effective there.
So my new treatment cocktail includes a return to some old favorites. Welcome back Herceptin and Taxotere! They are now joined by newcomer to the party, Pertuzamab. Pertuzamab is a HER-2 drug very similar to Herceptin, but studies show the two drugs taken together are more effective than either on their own. And Taxotere is more of a traditional chemo drug, which was part of my original chemo regimen back in 2010. The thinking is that hopefully the Herceptin and Pertuzamab will attack the cancer in the liver, while the Taxotere will keep the other areas in my lymph nodes, etc., quiet. It sounds like a war strategy, doesn't it?
I've now had two treatments of this new regimen and so far, so good. These drugs are much milder on the side effects scale than my most recent regimen, and that wasn't even that bad.
I did have the new experience though of having an initial reaction to the new drug. The very minute the Pertuzamab started dripping into my bloodstream, I suddenly got chills. My fever had risen slightly, and my blood pressure was really low. This is a common reaction to any new drug, but it was new for me as I've been on LOTS of new drugs and had never had any problems before. I was given Demerol to combat the reaction, which made me really drowsy - I basically took a nap the rest of the day in the chemo chair. Dr. Sara was not too concerned and said he did not expect it to happen again, and luckily it did not when I had my second treatment of this regimen last week.
One side effect of the Taxotere is hair loss though, so I will not be getting my hair back anytime soon. Sure enough, right on schedule about 18 days after my first treatment, I started noticing my hair falling out again. Now, my last few treatments have all caused hair loss and I've noticed it kind of ebbs and flows... it will come out heavily for a while starting the requisite 18 or 19 days after treatment, then it will slow down, then it might start up again, etc. The result being that right now I have what looks like a thinning buzz cut. It's not attractive to say the least, though Dr. Sara was quite amazed that I have as much hair as I do even after the Red Devil, I mean Adriamycin.
I have pretty much been "wigging it" since we lopped off what remained of my hair last Memorial Day. And I have added a new style to my wig repertoire as well:
I'm BLONDE! (PS aren't Claire and Ben just the cutest?) This wig is courtesy of the American Cancer Society. The NYC office runs a program providing free wigs to cancer patients. My friend Bernadette and I had fun trying on the different styles. Here is one we passed on; I call it my "Vegas look":
And lastly, I'm FAMOUS! Well, not really, but back in August I was interviewed for a CBS NY special that aired in September leading up to the Komen race. They did a segment highlighting all the great programs at Roosevelt, including music therapy. Here is the link; you can see me just before the 2:00 part. You will also see Dr. Sara and some of my favorite nurses: http://newyork.cbslocal.com/video/7706895-2012-susan-g-komen-race-for-the-cure-special-part-3/
And here's a pic my Mom took of the "shoot":
Until next time (which will be February - I promise!)...
Sunday, July 15, 2012
Catching Up
Yes, yes, I know it's been more than six months since my last post. It's not that things haven't been happening on the cancer front - they have (but don't worry, nothing tragic) - it's more that 1) I've been busy living my life and 2) lately, in the limited free time that I have, I've found myself not wanting to really sit down and think about cancer. But that being said, here is the Cliff Notes version of what's been happening over the last 6 months, and I really will try not to go so long without updating next time.
Now, where did we leave off? Oh yeah, my cancer markers spiked, the PET showed some new spots, and so my treatment was changed to Halaven. The Halaven went well... once again, as seems to luckily be the pattern with me, I did not have any adverse side effects. The worst that happened was that my nails became really brittle and split, and I had to keep them really short. Miniscule in the grand scheme of things.
Better yet, the drug seemed to be working. In January, Dr. Sara re-ran the CEA test and the numbers had dropped significantly. I remember checking my phone after a meeting with a client on a Friday morning, and I had a message from Eugenie (Dr. Sara's nurse practitioner) with the favorable results. Now that's about the best news I could've received that day. I saved that message for awhile!
I got re-scanned again in March, and the results were mixed. The cancer in my liver and in some of the lymph nodes by my liver had decreased; some of the other spots (like the spot on my spine) had not changed; but there were also two spots in my abdomen which had increased and a new spot in lymph nodes on the right side of my neck (in addition to the left which was discovered in December).
There is unfortunately no such thing as a test that measures all the cancer in your body to be able to tell collectively whether there are more or less cancer cells than last time, so it was hard to say if the results were better or worse, but we were encouraged by the fact that there were decreases in the more "important" areas (i.e. the liver).
So Dr. Sara decided to keep me on the Halaven, but repeat the scan soon - in May - to keep a bit of a closer eye on things.
There is unfortunately no such thing as a test that measures all the cancer in your body to be able to tell collectively whether there are more or less cancer cells than last time, so it was hard to say if the results were better or worse, but we were encouraged by the fact that there were decreases in the more "important" areas (i.e. the liver).
So Dr. Sara decided to keep me on the Halaven, but repeat the scan soon - in May - to keep a bit of a closer eye on things.
And then in April during a clinical exam, he could feel that the lymph nodes in my neck were swollen - a sure sign that the cancer there was increasing. So I was scheduled for another PET scan and even before I had it Dr. Sara had decided on my new course of treatment.
The PET showed that some of the existing spots - including the liver - were more "active" (though not necessarily increased) and of course the cancer in the lymph nodes by my neck had increased, which we already knew.
My new treatment - which I am still on - became the combined forces of Avastin and Abraxane. Both drugs are 30-minute infusions, and I now go to chemo every week for three weeks, then have one week off. On weeks 1 and 3, I get both drugs, while on week 2 I only get the Abraxane.
The first day of my new treatment was extra long since the Avastin had to be administered over 90 minutes, to ensure no adverse reactions. I was in the infusion suite all day - it was like back to the early days of chemo. But, of course, I did not have any adverse reactions so the next time I received Avastin it was a 60-minute infusion, and now it is down and holding at 30 minutes.
One major side effect of this new treatment is that I have lost my hair again - well, sort of. It became very brittle and course a few weeks after treatment started - what I call "chemo hair" - and then it started falling out about a week or so before my birthday (May 29). Even though my hair is so thick that even after week of significant hair loss you still could not tell by looking at me, it was super annoying. I was constantly vacuuming my bathroom floor and after a week I was tired of pulling fist-sized clumps of hair out of the shower drain.
So over Memorial Day weekend, my brother-in-law Kevin once again put his shears to use and shaved my head. What a relief!
Oddly enough, it seems like my hair is growing back - I kind of have a crew cut now - but it's still very thin in the spots just above my temples. I look like I have male pattern baldness, so I pretty much keep it covered with my wigs or any variety of hats/scarves. I have gone running a few times and gone swimming in the ocean with nothing on my head... it's so hot out, that I just don't care sometimes! Luckily I haven't noticed any staring.
I've also noticed a little bit more fatigue than I'm used to. It's manageable; I just find that I need more like 8.5-9 hours of sleep these days rather than the standard 8. I'm trying to make an effort to go to bed a little earlier, especially during the week, but it's easier said than done.
On the bright side, my nails are no longer brittle and splitty; in fact they seem stronger than ever. Funny how the different drugs affect things differently.
And the new treatment is working. Almost immediately, we noticed a decrease in the lymph nodes. As Dr. Sara said, he of course does not like the fact that I have cancer in my lymph nodes, but it does apprise him the opportunity to be able to tell right away - without a scan - if the treatment is working.
I've now completed two full cycles of the new treatment, and will start cycle 3 this week. In the last few weeks there has not been a change in the lymph nodes, but this is not cause for alarm or reason to think the treatment is no longer working, since as long as it's not increasing it's good, and there could also be scar tissue there as well.
Pending no more unforeseen drama, my next PET scan will be after the next cycle, in August. I am coming up on a year since the cancer was discovered to have returned, so here's hoping for a better August than last year!
As I said in the beginning of this post, one of my "excuses" for not posting in so long is that I've been busy living my life. I am still working full-time and full-force; in fact, iVillage.com did a nice piece on me for doing just that, which you can check out here: http://www.ivillage.com/real-women-i-kept-working-while-i-had-cancer/4-a-460382?p=2
I am still traveling, both for fun and for work - so far in 2012 I have been to Seattle, Las Vegas, San Diego, Dallas, upstate New York (twice), Washington, DC (a few times), Portland (Oregon), the Jersey shore (a lot), and also have upcoming trips planned next month to Bedford, PA; Denver and Las Vegas (again).
I've also tried to stay active. I started off the year great with a 5-mile "Hangover" run in my hometown of Hamilton. Here is my sister - pregnant at the time - and me at the finish line:
While my commitment to staying active has kind of waned in the last few months as I've been adjusting to this new treatment, the summer has re-inspired me to get back to the gym!
And most importantly, there is a new member of our family. My nephew Benjamin John Kirner was born June 17th. Now Claire has a little brother!
Here's a picture of the little guy:
And here is a picture of me with both of my little munchkins:
So you can see, it's been a busy year... until next time!
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