It’s hard to believe it has been two months since my last post. Sorry for keeping so many of you in the dark. It’s been a whirlwind of activity and emotional preoccupation and I haven’t had either a spare second or the energy to write down everything that has happened until now. Let’s see if I can bring everyone up to date.
Looking back at my last post, I can’t even believe everything that has happened since October. I left you last having told you all about my scans not coming back clean with regard to my lungs. I did hear back from my former endocrinologist, Dr. Sullivan (I say former….I’ll get to that shortly) or I called her, I can’t remember. At any rate, Jeremy and I met with her and the short version of that story is that her plan of action was simply to schedule me for another round of RAI (radioactive iodine). I had been doing quite a bit of research after I found out about my Tg (thyroglobulin) levels increasing and I had found a number of medical journal articles regarding metastasized/advanced thyroid cancer and there was some debate about the benefits of using PET-CT scanning vs. MRI scanning and possibly bone scanning to really get the best view of the cancer and exactly where it is and how extensive. RAI scans don’t necessarily provide an accurate picture of the cancer because they only show disease that is actively taking up iodine, as a true thyroid cell would. However, that’s only useful for imaging what’s called well-differentiated thyroid cancer. Often times, thyroid cancer cells morph into less well-differentiated (nondifferentiated) thyroid cancer cells, meaning they are less and less like actual thyroid cells and may or may not behave similarly (i.e. may or may not take up iodine). Neither Jeremy nor I were happy with Dr. Sullivan’s answers to my many, many questions pertaining to the research I had done. She did agree to schedule me for a PET-CT, but Jeremy and I reached a point where we felt that a second and potentially third (or more) 0pinion was necessary.
The research I found pointed me in two directions: Memorial Sloan-Kettering in NYC and another doctor in the same practice as Dr. Sullivan, Dr. Jason Wexler. Memorial Sloan-Kettering wound up being a dead end at that time. The doctors that I particularly had an interest in consulting with, who are known for their expertise in advanced thyroid cancer, weren’t accepting new patients. Dr. Wexler, at Washington Hospital Center, was also a hard man to get ahold of. After I tried calling and leaving messages multiple times, the Miracle Worker (aka Jeremy) managed to get me an appointment with him the following Monday! (I really don’t know how I would get through life without this man….)
After meeting with Dr. Wexler, Jeremy and I were both in agreement that this was the doctor we wanted to stick with. Meeting with him confirmed the impression of him that I had gotten from reading his article on metastasized thyroid cancer. He was our guy. He agreed with the PET-CT scan that I had already scheduled and another round of dosimetry (calculating the maximum amount of RAI that I could receive without damaging my bone marrow), as well as a brain MRI to rule out brain or bone metastases and a neck ultrasound to confirm that there were no additional suspicious lymph nodes in my neck. He also scheduled me for a pulmonary function test, since I have been having more trouble breathing over the course of the last year, especially when I exert myself physically (yep, I am still pushing myself and going to the gym 4 days a week — I’ve only missed a couple of workouts). Dr. Wexler also volunteered to present my case to the weekly Thyroid Tumor Board meeting held at WHC, which is composed of various oncologists, endocrinologists, radiation oncologists, nuclear medicine physicians, etc. They meet weekly to discuss new research, complex cases, and the like and get consensus on the best course of action in cases that aren’t cut and dry (like mine). He was very thorough and spent nearly two hours talking to us and answering my questions.
The earliest I could get scheduled for dosimetry and treatment was the week of December 9…..which wound up working out just fine, since I was still going to classes during this time (finals were scheduled to finish on December 11). It made me nervous to wait what seemed like a long time to get the treatment, but Dr. Wexler assured us that this wouldn’t have a negative impact whatsoever. In the meantime, my dad’s “thyroid guy” suggested seeing a doctor at John’s Hopkins, so Jeremy and I trekked up to Baltimore to meet with Dr. Ball, who is also one of the top thyroid cancer experts in the country. He didn’t have all of my information in front of him, but from what he had access to, he agreed with what Dr. Wexler had told us. He mentioned that he works with doctors at WHC on complex cases and that he would be happy to provide a second consult on my case in association with Dr. Wexler.
The beginning and middle of November was a whirlwind of medical tests, work, school, exams, and various appointments. Fortunately, my neck ultrasound confirmed what the RAI one year scan had suggested — no more tumors or suspicious masses in my neck or thyroid bed. Yes!!! Good news!!! The pulmonary function test also showed normal lung function, so my trouble breathing is likely just a slow process of adjusting to the new scar tissue in my lungs and reduced function from what I am used to, rather than significant functional impairment. (No more marathons for me, I guess!) And my brain MRI was clean, other than a benign cyst on my pineal gland, which is apparently pretty common and not something to be concerned about.
The PET-CT wasn’t great news, on the other hand. Although I am lucky that there wasn’t a significant size increase in any of the tumors in my lungs (the largest went from 5mm to 6mm), there was still just as much activity evidenced on the PET-CT (maybe more, I’m not entirely sure) as the one I had done last year, prior to being treated with RAI. The next step was to complete the dosimetry and see what my maximum RAI dose would be calculated at and move forward with another round of treatment.
So between the end of October and the beginning of December, I completed all of my medical tests and started the low iodine diet again the Monday BEFORE Thanksgiving…..meaning Jeremy and I stayed home for the holiday. With so many dietary restrictions, there was no way to go anywhere to anyone else’s for the holiday. No dairy, no egg yolks, no soy, no sea salt, no seafood, no regular salt…..etc, etc, ad nauseum. I know none of you doubted my skills at all, but I managed to make an awesome (if I do say so myself) Thanksgiving feast, complete with oven roasted turkey with an apple cider bourbon glaze and homemade turkey gravy, sweet potato casserole with homemade candied pecans, garlic smashed potatoes, pumpkin fritters with homemade bourbon caramel sauce, honey skillet cornbread (my one EPIC fail of the day), apple pie, pumpkin pie, and pumpkin snickerdoodles. Aliza wound up joining us, as she had JUST gotten back from Israel the day before. So it was a really nice, quiet Thanksgiving with an obscene amount of food. (And in case you were wondering, my “butter” substitute was an organic palm oil shortening that I discovered…..since Crisco has SOY in it!!!)
Yes, I know, when did I have time to do all of this?!? And with what energy?!? I honestly couldn’t tell you. I also had to study for my Anatomy & Physiology Lab and Lecture final exams and my Medical Terminology (online) final exam. Cooking was therapeutic…..either that or an outlet for my manic energy at that point. Nerves. I blame it on the nerves. Either way, it had a really nice end result, don’t you think?
So, then I focused all that nervous energy on studying for my exams. Which wasn’t all that hard, really. I loved my A&P class…..the professor was awesome and really made the class come alive. It never felt like sitting in a lecture. He always had real-life stories about what we were learning about. So a lot of the information had already stuck before I even went back to review it. Plus, so much of the stuff I was learning in class was (unfortunately) coming alive for me in my own health issues, so I really had a reason to learn it all.
This is when I got the best news I have gotten in the last 3 months. I had my A&P Lab Practical scheduled for the Wednesday after Thanksgiving, with my treatments AND my lecture exam starting the Monday after that. (I take after my mother….I don’t know the meaning of overprogramming.) So I went in on that Wednesday to take my Lab Practical and….I have to tell the whole story. My professor, Dr. N, asked everyone to have a seat in the pre-lab area so that he could tell us a story before beginning the exam. When he was in his second year of college, he had signed up for a very challenging series of science-heavy coursework. At that time, there were year-long courses with end-of-year cumulative exams. Dr. N had worked like crazy the whole year to achieve as close to a 4.0 as possible. He made it through the year and got all the way up to the week before finals and wasn’t sure how to succeed at all of the exams for his challenging courses. In the last physics class before the final exam, the professor went over all of the course material that was expected for the exam. Thinking that he would have to “punt” this exam so that he could do well in all of the others, my professor said that his physics professor had one more thing to say before letting everyone go. In this class of around 100 students, the professor had a practice of exempting the top 5 students from taking the final. My professor was praying HARD to hear his name in that top 5. The physics professor called the first name, then the second, then the third and then the fourth name. And lo and behold, the fifth name called was my professor’s name. He called that his “ah hah” moment….when he knew he was headed in the right direction and he could achieve his goal of being Doctor. My professor, Dr. N, followed up that story by saying he doesn’t remember that professor’s name, although he should. But the vividly remembers how he looked and how great of an impact that moment had on him. Our class was significantly smaller, less than 20 students. And he said there were a number of As in the class and quite a few students with promising futures in the medical field. But one student “brought it” each and every class, each and every quiz, each and every exam. And so he announced MY name as being the one student exempt from taking the final lecture exam.
There’s no way to express to you what a gift that was to me at that moment. I could have easily taken the exam. I would have aced it, just like I did all of the others, because I loved the class and the material and I think I finally just figured out what I was born to do. But that news was just the one ray of sunshine in what was a very dark few months that literally made my insides smile and gave me hope again. (So, if you’re reading this Dr. N, thank you. You gave me my very own “ah hah” moment.) (And I did still have to take my Medical Terminology final…. 😛 )
The following Monday I went in for the start of my dosimetry week. Basically I had two days of Thyrogen injections (artificially stimulating my TSH so that I didn’t have to withdraw my thyroid hormones and feel awful for weeks), then another mini RAI dose, and then daily scans for 6 days. Jeremy’s idea of fun at those injection appointments was flicking me in the arm, repeatedly, immediately prior to the nurse giving me my Thyrogen injections, resulting in numerous bright red welts up and down my arm. He was immensely pleased when the poor, confused nurse asked what had happened to my arm. He’s lucky that hospital security didn’t come over to ask what was going on…. 😛
The morning that I went in for my mini RAI dose (Wednesday the 11th of December) I managed to drag myself out of bed early and make this pasta sauce that I had been hoping to have time for. Without store bought sauces and dips, food is boring and bland on the low iodine diet. It’s hard to eat. About the only thing that tasted any good by this point was bananas in my homemade honey macadamia peanut butter. You can’t live on that. (Well, if you must know, you CAN live on that for a few days…..but then you run out of ANYTHING to eat because you’ve just rendered those foods inedible, too. I think it must be mostly psychological.)
This year I was brave enough to ask if I could take more pictures of my treatments and pills and machines. The nuclear medicine techs are all AMAZING at WHC and let me take pictures of whatever I wanted. So, in case you were wondering, this is the protective case that my personally-formulated I-131 pill came in that day:
And this is the pill. Amazing that this little thing makes you radioactive. It’s about the same size (maybe identical) to the massive dose that I got last year. Looks like a probiotic. Makes you toxic to other living creatures (and yourself, really). This time I only had 2mCi. Just enough to test where it went in my body and how quickly I expelled the radioactive material.
So, for 2 days (48 hours) I was radioactive again, sleeping by myself, using my own bathroom, and trying to touch as little as possible. It’s not nearly as bad or dangerous as after the full dose (last year I had 250mCi……100 times the dose I had for this round of dosimetry), but I don’t need to be damaging Jeremy’s thyroid (or the dog or cats…..). So, Jeremy was my personal chef for 2 days and those were the best 2 days of food I had the entire time I was on the diet!
Starting on the Wednesday that I took the RAI pill, I became besties with the E-Cam again. I spent 2 hours in this machine a couple of hours after I took the pill and then 20 minutes the next day, 4 hours in this machine (and 2 other similar machines) on Friday, then 20 minutes on Saturday, nothing on Sunday and 20 minutes on Monday. Most of the days the scans were just to get a reading of how much radioactivity I was emitting after however many hours had passed. By Saturday I was almost down to normal radioactive “background noise” that everyone emits naturally. Which is good and bad. Good because it means my kidneys function great (YES!!! Something works!!!), but bad because it means that it wasn’t “sticking” anywhere in my body. Friday was a long day of scans to actually take images of where the iodine was concentrated and how much.
During my week of dosimetry, I spent a lot of time talking to and emailing back and forth with Dr. Wexler regarding my treatment plans. Apparently, Dr. Ball at Johns Hopkins was true to his word and was keeping in close touch with Dr. Wexler regarding my case. There was some discussion going on between them about the possibility of me benefiting from postponing my treatment and waiting to get into a clinical trial. There are a number of clinical trials coming up testing drugs that are showing promise at increasing the uptake of iodine in thyroid cancer cells. One of the trials that is ongoing currently is specifically targeting a mutated gene present in some thyroid cancers, called a BRAF mutation. So a number of weeks ago, samples of my tumor were sent out to be tested for this mutation. Unfortunately or fortunately, my tumors didn’t have that gene mutation, so I didn’t qualify for that trial. However, there are some other clinical trials that are scheduled to start sometime in the next 6 to 12 months that don’t require that genetic mutation in the tumors. The short version of the story is that there wasn’t any definitive agreement as to whether I could afford to wait that long to get into a trial. That changed.
I completed my dosimetry scans on Monday, December 16. On Tuesday, I spoke with Dr. Wexler regarding the results. He had been in contact with Dr. Ball and had also already presented my results to the Thyroid Tumor Board and the general consensus had been that the benefits of treating me at this time would not outweigh the risks. Basically, the dosimetry scans had showed very minimal uptake of the RAI in my lung tumors. In addition, my maximum dose of RAI had been calculated at 900mCi. This means that my body expelled the radioactive material at a very fast rate. There could be two possible explanations for this. Either my tumors aren’t taking up much of the radioactive iodine or they are taking it up but expelling it almost immediately. In either case, no matter how high of a dose of the RAI I am given, there isn’t a very good chance based on the dosimetry scans, that my tumors will get enough exposure to the radioactive material to have any impact on them and the high dose of radiation will likely damage healthy organs. All of the doctors involved in reviewing my case agreed that I wouldn’t get any benefit out of treatment and so my treatment, scheduled for December 27, should be cancelled.
So where does this leave us? Dr. Wexler believes that at this moment the best we can do is watch and wait. Most clinical trials require at least one tumor to have a diameter of 1cm or larger in order to qualify for the trial. My largest tumor currently measures 6mm. So right now the plan is to watch and wait. Perhaps my cancer will be very slow growing or “stable disease” (meaning it stays about the same). Or, if it grows, then there will hopefully be room for me to get into one of the clinical trials for drugs that increase the uptake of radioactive iodine.
My dad and another excellent doctor friend of his are inquiring from Dr. Wexler about the possibility of getting a few biopsies of my lung tumors, to verify that the lung tumors are the same type of cancer as what was found in my neck. But I don’t know yet whether or not that will happen.
So, for now, we are trying to put this aside and try to go back to life as “normal” as possible. I’ll be going in for follow up bloodwork periodically and in 6 months I’ll have a chest x-ray to see if there has been any change in the lung tumors. But not much else can be done right now aside from that.
Thank you all for checking in on us periodically. We really appreciate it.
We hope you all have a happy, healthy holiday season and a very happy new year!
Keren & Jeremy