Knowledge is Power!

I was fortunate enough to attend the Thyroid Cancer Survivor’s Association’s annual conference which is in its 17^th year that was held on 17-19 October in Denver, CO. What a truly amazing experience and something which any thyroid cancer survivor can benefit from attending at least once. It’s not only the information gained about this disease, but those connections with other people who are facing similar circumstances. It was great being able to actually talk and meet those in person whom I have been communicating in the online support forums with.  I just love meeting new people and hearing their stories of where they have been in their journey; we really do learn from one another.

For the very first year after my diagnosis I really felt like I was up a creek without a paddle. I had no idea of how to steer my way through this cancer diagnosis. The only support system I had was my immediate family who did their best to provide that assurance to me that I was going to be ok. However, it would have been a much easier journey had there been someone I could talk and relate to who knew what I was going through and experiencing. At the time of my diagnosis, I was going in between having to be rushed out of Japan back to the United States in order to get good medical care, being separated from my immediate family for many months and then returning back to Japan for only a short time as then our family was transferred back to the United States for my husband’s job just so that we could be near some good facilities for my follow-up care. After our move to Colorado, I was able to learn about the local support group which I found out about from a flyer which was in the endocrinology office. So I thought to myself, what the hell I might as well kill two birds with one stone. So after one of my medical appointments I decided to stay a bit longer in Denver in order to attend the support meeting. Was that ever a good decision as the support group has been such a lifeline for me. It has helped me to know what is and is not normal and the questions I need to be asking my doctors. More importantly they are truly a wonderful group of people that I now call my dear friends. I would have to say that the majority of what I have learned about this disease has come from support groups, both local and online. Our doctors simply don’t have the time to tell us everything we need to know about our disease and why we need to be our own advocate and educate ourselves.

With that being said the support groups have spoken very highly of attending this annual conference that the Thyroid Cancer Association has every year. This is a conference where they have experts from all over the country come and talk about various topics. It is at a different location every year and this year it fortunately was held in Denver, so I was able to attend. There is new information that is evolving all of the time as researchers find new ways of treating this disease. The conference was full of so many wonderful speakers  with doctors from all over the country from some of the top cancer centers such as MD Anderson, Memorial-Sloan Kettering, John Hopkins, Massachusetts General…….the list just goes on and on.

The topics which I was most interested in were other treatment options for those with advanced disease that have failed traditional treatments with radioactive iodine. I wanted to educate myself about the chemo drugs that are being used in clinical trials that have had success. This will be the next step for me when this watchful waiting approach will no longer hold for me. My medical team will have to determine whether surgery is still an option, but I do understand that it might not be feasible, because of where my cancer is still located. It could possibly be too risky, but that is a decision which my surgeon will have to assess, but something that we will do together. I am fully aware that my cancer will grow at some point in time; we may need to explore other options and I just want to be prepared for what lies ahead.  It was quite interesting to hear these doctors explain about the different chemo drugs that are successful, but they also explained in great detail the science in how they work in a language that was easily understandable. I was able to gain knowledge about the different mutations and what specific drugs are being used to target these mutations. In addition, I learned about a clinical trial that Memorial-Sloan Kettering is working on to reverse the effect so that those of us who are RAI refractory can then have the ability to take up the iodine so that type of therapy can then be utilized.

One amazing speaker Dr. Steven Sherman, chairman from an organization called ITOG (International Thyroid Oncology Group) talked about the group and what their mission and purpose is.  This is a collection of scientists, doctors and patient volunteers in which they focus on identifying new therapies for thyroid cancer and improving patient experiences. More information can be obtained at their website:

http://itog.org/

The Dinner/Auction was a very fun night. At the live auction someone had offered to do a dance on the table to get people involved by pulling out their pocketbook to raise funds for research and throughout the night over $35,000 was raised for thyroid cancer research. One of the great doctors was honored for his work and support of all thyroid cancer patients, Dr. Bryan Haugen, who is such an amazing man! In addition, there was dancing which was a total blast and I think was just a fun night where we could all relax a bit and not have to think about cancer, but just to have some good old fun!

Overall, there were more than 600 people from the US, Canada, and United Kingdom which attended the ThyCa conference this year and from what I hear it was the biggest attendance on record! So much information was gained at this conference, but the key message that I want to get across to people is to educate, educate, educate yourself about your medical conditions and be aware of your own body, so when you see those red flags come up that you need to take action, because for some it is just too late. What I think is the big take away here is that knowledge is a powerful tool that we can utilize and something which needs to be shared which is why I continue to share what I know about this disease. I came across this quote that I think is very fitting:

 

 

 

 

It’s That Time Again!

Well here we go again it is that time for testing once again. I’ve been at this thing for over three years and it still gets hard not to worry about what will be found. They scanned my neck even more thoroughly than they have before, scanning the same area multiple times and with more than one tech. I have been a bit anxious this week waiting for the results as they have never scanned me like that before and maybe they were just being very thorough which is good. I would rather them be thorough than not scan me enough, as I have seen that happen to others where techs barely graze their neck and miss something that was there. I had my follow-up with Dr. Song and the results of the ultrasound show a slight increase in the nodule size and my lab work is showing that my tumor markers are up slightly as well. Although it’s not a big jump where we would actually have to do something about it; however, it is essential that we continuously monitor this. Moreover, my T4 levels are too high once again so now we’re back at the drawing board again, trying to get my levels right and having to adjust the dosage of my thyroid meds. Back in April my levels were just perfect and I thought after three years we finally achieved the perfect match with the right drug and correct dosage as I had never felt better. However, lately I’ve not been feeling that great and have had more fatigue again and now the high T4 explains why. I am surprised that this hasn’t yet pushed my heart back into overdrive again. I really don’t like the thought of having to add that tiny little pill back into my med regimen and hoping that never happens ever again! After this next adjustment, we’ll check my levels again in two months and hopefully I can get back on track; it will then be another recheck of my tumor markers along with another neck ultrasound in six more months. This game sure never gets any easier!

Bye-Bye Beta Blocker

Had my follow-up with my cardiologist, Dr. Kim and now that my thyroid levels seem to be getting better and I’ve not had issues with the heart palpitations for quite some time he is weaning me off of the beta blocker! Hooray and a happy day for me! Now I get to delete another pill off my med list. He says to keep my meds on hand in case that I may start having palpitations again, but feels that because I’ve had to be kept so suppressed, the thyroid levels were the major culprit in why I started having these issues in the first place. So I will only need to follow-up with him as needed. I will miss coming in to see him as he always makes me laugh and puts a smile on my face. However, tiny little pill it has been real, but it’s time to say bye-bye and I hope to never have to see you again!

Top-Notch Medical Teams

Of the numerous amounts of people on my care teams, those which have had the greatest impact on me throughout my journey would have to be my wonderful surgeons. They have not only strived to heal my body physically, but have helped me in so many other ways. From the moment that I walked into Dr. Song’s office, he has shown such genuine concern for my well-being and progress and what he can do to help in the process. He has never wavered in ALWAYS, ALWAYS giving me the encouragement and support that I so desperately needed, especially during those times when things have just not been in my favor. He has consistently given me one-hundred and ten percent and beyond and I feel so privileged to have him as my doctor. I am very grateful to him for his persistence and patience. I believe it must have had to take a great deal of patience on his part when he was faced with the myriad of challenges in trying to find this cancer during my surgery. I can imagine that he must have been frustrated; however, I believe that he was persistent and did absolutely EVERYTHING in his power to find this blasted cancer! His tireless efforts are to be commended and I appreciate him more and more each day for all that he has done and continues to do for me.

In addition, my daughter has benefited from his expertise as well. She was having some thyroid issues of her own; we were not really happy with her current doctor and felt as though they were not taking a very proactive approach to this, especially with our family history. However, I knew bringing her to Dr. Song for a second opinion was the right choice. He has been very instrumental in helping us get to the bottom of what was really going on with her thyroid and has always consistently ensured that her condition is being continuously monitored very closely. He is one incredibly intelligent and wise man who never ceases to amaze me with his knowledge and talents!

Moreover, Dr. Bentz has always been such a positive influence on me and I can always count on him to lift me up. He has really taught me about always having a positive attitude even amid the circumstances and challenges that I have faced with this cancer. After all, attitude is everything, especially for a cancer survivor! The medical community has not only benefited from Dr. Bentz and his excellent surgical skills, but more importantly by his huge and caring heart. He really cares about his patients and it shows in the way in which he interacts with them. This is a doctor who takes his job seriously and shows such dedication to his patients and will do EVERYTHING he can to help you. Anyone who is fortunate enough to come in contact with him benefits a thousand times over, because of his knowledge and the compassion he demonstrates consistently for people, as he truly has a heart of gold. I am so thankful to have had him as my surgeon and I appreciate his continual advice and wisdom!

I really did hit the jackpot with these two impeccable surgeons as I know many people have not been so lucky and have had their surgeries not turn out so favorably. Having surgery in the neck area is very delicate and you need to have a skilled, experienced surgeon to ensure that you can have the best outcome possible. I am so fortunate and count my blessings every day to have had two of the best surgeons around.

What sets these two exemplary doctors apart from other doctors is that they never make you feel like you are just another number passing through the system. I have felt like that with some doctors and others I’ve talked with whose doctors just dismiss them as though they are not important and just push them out the door. With these doctors you immediately feel like you are being treated as though you were a family member, rather than some random stranger because of the great concern and care they show towards you and make you feel as though you do matter.

I want to give these doctors the recognition that they are so deserving of; they are truly gifted doctors that use their God-given talents and abilities to the fullest extent possible in helping and providing hope to others. They are the epitome of what it means to show compassion for people and are making their mark on the world. I thank them both for being the phenomenal doctors and unique individuals that they are; truly they are a rare breed and we need more doctors like them in our healthcare system. I really respect and admire what they have to do on a continual basis, day in and day out; they are men of great integrity and character and I feel so fortunate to have them on my side.

Both of these exceptional docs have been such an integral part of my journey and have played such a key role in my outcome. Words just cannot express the gratitude that I have for these two wonderful men, who have taught me much. One of the most important and lasting things that I have learned from them both is that there is ALWAYS hope which has truly been the guiding force that has seen me through this whole ordeal. They have always encouraged me to NEVER give up no matter how bad my situation has seemed and that I can and will conquer this! Encouragement goes a long way and sometimes what helps you the most to get through whatever challenge you are facing. Medicine is so much more than just the physical healing of the human body, and for me it has been the support and encouragement that these doctors have provided which has meant the world to me. You treasure those who mean the most to you and these two outstanding docs are definitely at the top of my list. To me they are my heroes as they have saved my life and have helped me in many more ways than they even realize; I would not have made it through this journey without either one of them!

I have had the BEST medical teams available to me and they are some of the most impeccable professionals I have been so fortunate to know. These amazing doctors and nurses on my care teams have helped me to understand and recognize that I need to be in constant fighting mode and that giving up is simply NOT an option, even though it would have been the easy thing to do. This has helped me to realize that my life is definitely something worth fighting for and I will do whatever it takes to kick this cancer to the curb! I will say that all of those on my care teams have played such a vital role in my journey and I consider myself extremely lucky to have so many people looking out for me.

Reaction

Wow, did I ever speak too soon with the increase of the Synthroid! It is now six weeks later and my levels are way too high; no wonder I have started feeling so horrible! I can’t seem to get my levels right. One dose is too low and another is way too high. It makes me wonder if I will be one of those patients that can never get their levels right – this can be so frustrating! Moreover, I am just grateful that I have an endo who doesn’t just look at numbers, but also takes into consideration into how I feel; since we switched to the Synthroid I just have not felt well and have had many different issues – I have had the fatigue again, a lot of joint and muscle pain and major brain fog. So now we are going to try a different brand by using Tirosint. I have talked with many people who have had positive results and feel so much better, being that they had to switch from Levoxyl as well. The thing with Tirosint is that it is pure gel form and doesn’t contain any filler’s which I think is a major problem for some people as they don’t respond well to it and have many issues because of it. I really love the fact of how open my endo is to new ideas and doing those things that will be of benefit to me and helping me to have a better quality of life.

Recall

Now it is March 2013 and the drug company that manufactures the thyroid drug Levoxyl, which I am taking decides to recall the drug. This feels like I have just been thrown under the bus! I have been taking that drug for the last eight months with better results on my levels and I have felt better taking it versus the generic brand. So now due to the recall they will not be manufacturing the drug until mid-2014. Now, my endo is switching me to Synthroid, so we’ll see how that pans out and what side effects I get from that. One thing that concerns me is that I worry that the effects of changing meds again will push my heart rate back into overdrive again. I will have to deal with getting the right dosage once again and it’s like we are starting all over again. This is the most frustrating part of dealing with thyroid cancer. It is a roller coaster ride of getting on the right dosage of the meds without having too many side effects from it. It seems like a never-ending cycle, just when things are going good something jolts everything out of whack and it feels like you are back at square one. Time will tell and I just really hope that it all works out for me and that I can stay suppressed without too many effects from it and something that I can deal with.

Follow-up

Come January 2013, I had another ultrasound which shows no further growth and so now I am celebrating that and doing the happy dance! About a week after the ultrasound I saw Dr. Song again and he said that he has high hopes that it does not develop into anything more. He did bring up something quite interesting in which he had a patient who had a recurrence happen thirty years later. That just goes to show that this monster can recur at any given moment and is why we need to be very vigilant as it can sneak up on you when you least expect it!

I have watched a recent Webinar that was presented on thyroid surgery and re-surgeries and the ensuing complications that can result to the laryngeal nerves. I was able to really understand the effects that can take place when those nerves are injured. I have also talked with others cancer survivors who have had similar experiences and the lasting effects it has had on their life. Now, I think it truly has sunk in my head what Dr. Song has been telling me over and over and how going back in now would be doing more harm than good! As far as I am concerned he can keep his scalpel as far, far away from me as possible. Keep it tucked away, hidden in a drawer for a long time to come, or better yet he could lose that scalpel permanently! Dr. Song has done the best thing he could possibly do for me by telling me NO – that surgery was not the answer in my situation, even though at times it was hard for me to understand that. Much like a parent disciplines their children for their own good as I have done with my own children many times. The decisions that he has made has been for my own good and now I can really see why and I am so grateful to him for that!

I also followed up with my most amazing endo, whom I absolutely love! It is nice when you are on the same page as your doctors and you don’t have to fight to get what you want as I know many people have struggled in finding the right doctor that really listens to them. That has never been an issue for me at all and I am so fortunate to be at a top-notch facility that is on the forefront of cancer treatment. The great news is that I will only need to be followed with just ultrasound and Tg testing, so no more whole body scans! That is a celebration in itself as I really hate those whole body scans! Hopefully, my TSH can stay suppressed at a level that will keep the cancer at bay and the next testing will be in July. I am coming up on my two-year mark since my TT. It has been an interesting two years and I hope that one day I can be in that category of a long-term survivor.

More Issues

At about the same time I was having issues again with my eye drooping again and also started having eye twitching of my bottom lid on my left eye which occurred very frequently, what seemed to be about every two minutes. I emailed Dr. Song about it and so they had my PCP check my calcium, Vitamin D and parathyroid levels which were all normal. Although my calcium level was borderline low, a few days later I know that it dropped even further as I started having numbness and cramping in my fingers and around my mouth, the same feeling I had right after surgery when my calcium had tanked. I remedied that with some Tums and really pushing in getting enough calcium back into my system. The eye twitching has been a continued problem and is unfortunately just a related nerve issue, just something else to annoy me! Dr. Song explained that the eye droop was just temporary and was due to the nerve being stretched during surgery, but should improve over time. He said that the fact that it comes and goes is an indicator that it is something which is temporary, because if it was there all the time that would be more of a permanent situation.

Additionally, it was time for my annual mammogram and they had to recall me back for further images. OMG, please don’t tell me I may now be dealing with the possibility of breast cancer! We have a history of breast cancer in our family. I have heard of people having both thyroid cancer and getting subsequent breast cancer or vice versa; I was hoping and praying that was not my situation as I always worry about getting secondary cancers, because of the radiation exposure. I think I have had just about enough of this cancer mess! Lucky for me, I went back for those repeat images and thank God all is good! Another bullet dodged!

Cardiac Evaluation

The PCP then sent me to a cardiologist due to an abnormality they found on my EKG. The cardiologist was a Korean doctor, but he had a southern accent which is something that I just was not expecting. He was pretty funny and kept joking with me and I think we spent half the time talking about living in Japan. I was sent for a cardiac stress test which initially didn’t reveal any distinct problems. However, I had been tracking my heart rate which was showing a pattern of being quite high, so he had me do a 30-day heart event monitor. The cardiologist explained that because of the high suppressive dose of my thyroid meds that most likely he was going to place me on a beta blocker in an effort to get my heart rate down to a decent level. That was an interesting thing, I had electrodes placed on my chest and was connected to this monitor and had to press it when I had symptoms from heart palpitations to high/low readings of my heart rate. I was so glad to get those electrodes off my skin, it was so raw and I ended up having my PCP give me a steroid ointment to clear up the rash that it caused.

About mid-way through I was having many fluctuations with my heart rate going from very high to very low. My resting heart rate reached the level of 150 beats per minute, which was just not normal and during exercise it reached up to 250 beats per minute and was not calming down, way past the maximum even for a really trained athlete! The cardiologist finally put me on the beta blocker, which helped tremendously. Going through that really scared the hell out of me! It truly felt like my heart was going to leap out of my damn chest.

During this time, I was in constant email contact with the endo and was able to get them to lower my Levoxyl dosage. I understand the need to be kept suppressed, especially with me having a current metastatic nodule still inside me and at very high risk for cancer spread; however, at the same time I needed to be able to function. I was overly suppressed as my TSH levels reached to near zero and with all of the heart issues as well, they were able to lower my dose. Now, I am doing so much better since the dose reduction and the addition of the beta blocker. It is just amazing to me the effects that the thyroid has on the body and how much it controls everything!

Follow-up

It is now near the end of August and time for the repeat Ultrasound. Prior to having my appointment, I was just crossing my fingers that I would have a stable exam. Luckily, it showed no growth and my Tg number was low at 0.3. Dr. Song explained that we will continue monitoring the nodule and will repeat the ultrasound in January.

Well now I am starting over with Endo number two as Dr. Lund had to go and graduate from his fellowship and has moved on to another practice. I always seem to lose the good ones! On the other hand, I now have the most amazing Endo, Dr. Mark Bridenstine, another fellow for Dr. McDermott and I hope that he will be around for a while. We went over my entire history bit by bit discussing everything and every possible scenario that could happen. He is so detailed and leaves no stone unturned. This one is definitely a keeper and I truly am blessed to have such an outstanding team of doctors. One thing that I did learn was that the reason my iodine uptake scan did not light up when it really should have, is that I am not avid for iodine and so that treatment really does me no good. I sure wish they would have made that clearer to me before, maybe they had and I just didn’t quite process it. Well this is just great, another complicating factor that makes my treatment protocol and plan even more difficult! Can I ever catch a break here?