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!
It is now July of 2013 and time for testing once again. Every time I come up on follow-up testing I always worry and wonder are they going to find something more, is the tumor marker going to rise? It is a hold your breath and wait for it……wait for it…..moment which feels like it has no end. You go in and get the tests and then have to wait for the results. I think that is the most nerve wracking part of it all being kept in limbo not knowing whether it is good or bad. The fortunate thing is that with the hospital system at UCH you have automatic access to your medical records so you can see the lab results online and don’t have to wait for the phone call from your doc. Best invention ever designed with the patient in mind. The result for the lab work is fairly quick; however, results from ultrasounds and scans takes a bit longer. I am so fortunate to have such wonderful docs that are on top of everything and usually call me fairly quickly with my scan results so I don’t wait too long.
The results are in – absolutely no growth of my existing nodule! The nodule has stayed the same exact size since the last ultrasound. Yeah for me! So I am celebrating and doing the happy dance! How I would long to hear those words cancer free, but I really don’t think that will ever happen in my lifetime; I’m not even sure that it’s possible, because with thyroid cancer the likelihood of recurrences are so high. However, I am really grateful for those stable results; stable is good given the other alternative of it taking a nose dive and having the increased risk of more cancer cells growing and multiplying.
My TSH level is slightly above where I really need to be to keep those cancer cells from waking up and so we are going to try and raise the dose of Synthroid on a trial basis and hope that it doesn’t push my heart rate back into overdrive again. Time will tell how my body will react and I’m hoping that all will be well and that I don’t have side effects from the dose increase. Currently, my Tg marker has gone up from 0.4 to 0.5 which is not a significant rise and seems to be holding steady. However, if my Tg does rise significantly and there is an increase in the nodule size, Dr. Song tells me we’ll need to have a serious discussion on attempting to go back in to find this blasted cancer, which would mean another surgery. That is a conversation I really don’t want to have and hope that we never have to come to that point EVER!
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.
I came back to see the Endocrinologist on November 2, 2011; the endocrinologists that I saw were Dr. Greg Lund which is a fellow to Dr. Michael McDermott. They went over my entire history reviewing everything in great detail and I spent nearly an hour talking with them about my case. I really like these doctors and I am very impressed with them as they are very thorough. Although my TSH levels are not exactly where they want me to be at I am slowly, but surely getting there; however, they are going to increase my dosage and then I will follow-up with them in about three months. I came back a week later on November 8, 2011 to have the ultrasound and to also see the sinus specialist, Dr. Todd Kingdom and he was really phenomenal as well. He ordered for me to have a sinus CT scan which I had done a week later.