Persistent Papillary Thyroid Cancer with BRAF Mutation

Posted by littlemsmalibu1 @littlemsmalibu1, Nov 28, 2019

I am wondering if anyone else has a persistent thyroid cancer? I have pappilary with a braff mutation.I had my thyroid removed one year ago today. They told me they got it all and no lymph node involvement. My 1st checkup they found 2 suspicious lymph nodes in level 7 and we thought it wad missed and opted to do alcohol ablation. I went back in September for my 2nd treatment. They did an ultrasound and found more cancer positive lymph nodes on right of neck confirmed by FNA biopsy. I was back on October 2nd to have right and central neck dissection. I go back again in February for follow up. In 3 months it popped up in other spots so I wonder. How many of us will never reach No Evidence of Disease? What is that journey like???? 3 of many lymph nodes removed were positive besides the 2 killed by ablation all in under a year :(. No RAI and my meds work great. I feel no effects from not having a thyroid.

@littlemsmalibu1, welcome to Connect. You mention that you have papillary thyroid cancer with a BRAF mutation. From what I've read, the BRAF mutation contributes to the cancer being more persistent and at higher risk for recurrence that conventional papillary thyroid cancer. While that's not great, it is good that you and your care team know that you have the genetic mutation and that they know to monitor you more closely. I'd like to introduce you to a few other members who also have papillary thyroid cancer, like @blulilbaby @julieparton @love4life and @synm, who can share their experiences.

Littlemsmalibu1, I'm glad that the meds are working well for you and that you're not feeling side effects of not having a thyroid. For some people it can take quite some time to find the right dosage and balance. Did it take a while to get the meds right for you?

Liked by littlemsmalibu1

REPLY
@colleenyoung

@littlemsmalibu1, welcome to Connect. You mention that you have papillary thyroid cancer with a BRAF mutation. From what I've read, the BRAF mutation contributes to the cancer being more persistent and at higher risk for recurrence that conventional papillary thyroid cancer. While that's not great, it is good that you and your care team know that you have the genetic mutation and that they know to monitor you more closely. I'd like to introduce you to a few other members who also have papillary thyroid cancer, like @blulilbaby @julieparton @love4life and @synm, who can share their experiences.

Littlemsmalibu1, I'm glad that the meds are working well for you and that you're not feeling side effects of not having a thyroid. For some people it can take quite some time to find the right dosage and balance. Did it take a while to get the meds right for you?

Jump to this post

It took 3 dose adjustments and now I'm good. I never felt bad too high or too low. I take tirosint so it's unique in that its liquid and I have trouble digesting things so best choice.

REPLY

I have Follicular Thyroid cancer with the BRAF mutation. I had papillary as well, but it seems to be gone. I had my thyroid removed in 2008, which is when they found the papillary thyroid cancer, but it was so small they did not follow up with RAI or even thyroglobulin tests over the next 8 years. Christmas day 2016 I went to the hospital with chest pains. They found tumors all through out my lungs which were biopsied and found out to be follicular thyroid cancer. We tried RAI and it failed so I went to MD Anderson in Texas. There, they found it was also on my rib (which caused the chest pain) and a node on my adrenal gland. Now it has also spread to my scalp. I have done external beam radiation to shrink the tumor on my rib, which has me pain free now. I just got finished with a second RAI treatment after taking Mekinist for 3 months to make me more susceptible to the RAI. Initial scans did not looks like I was taking up the radiation, but I am still hoping for improvement.
I feel like if I had been more aggressive in 2008, I might not be in the pickle I am in now. It is unlikely that I will ever be cancer free.
Since you have already found that your cancer is more aggressive than most thyroid cancer, I recommend you learn as much as you can about your options ( I wish I had found Thyca.org back in 2008). You may decide you want to see a specialist. My doctor at MD Anderson specializes in Thyroid cancer so she know all the latest treatment options. With yours being so persistent, I hope you find a thyroid cancer specialist too. My local doctors did not even know about the tumor on my rib, they just pumped me full of Norco.

REPLY
@dizzyb

I have Follicular Thyroid cancer with the BRAF mutation. I had papillary as well, but it seems to be gone. I had my thyroid removed in 2008, which is when they found the papillary thyroid cancer, but it was so small they did not follow up with RAI or even thyroglobulin tests over the next 8 years. Christmas day 2016 I went to the hospital with chest pains. They found tumors all through out my lungs which were biopsied and found out to be follicular thyroid cancer. We tried RAI and it failed so I went to MD Anderson in Texas. There, they found it was also on my rib (which caused the chest pain) and a node on my adrenal gland. Now it has also spread to my scalp. I have done external beam radiation to shrink the tumor on my rib, which has me pain free now. I just got finished with a second RAI treatment after taking Mekinist for 3 months to make me more susceptible to the RAI. Initial scans did not looks like I was taking up the radiation, but I am still hoping for improvement.
I feel like if I had been more aggressive in 2008, I might not be in the pickle I am in now. It is unlikely that I will ever be cancer free.
Since you have already found that your cancer is more aggressive than most thyroid cancer, I recommend you learn as much as you can about your options ( I wish I had found Thyca.org back in 2008). You may decide you want to see a specialist. My doctor at MD Anderson specializes in Thyroid cancer so she know all the latest treatment options. With yours being so persistent, I hope you find a thyroid cancer specialist too. My local doctors did not even know about the tumor on my rib, they just pumped me full of Norco.

Jump to this post

Welcome to Connect, @dizzyb.
Did they explain why the radioactive iodine (RAI) did take? Are you part of this clinical trial?
– Efficacy of MEK (Trametinib) and BRAFV600E (Dabrafenib) Inhibitors With Radioactive Iodine (RAI) for the Treatment of Refractory Metastatic Differentiated Thyroid Cancer (MERAIODE) https://clinicaltrials.gov/ct2/show/NCT03244956

While the initial scans don't look promising, are you still taking Mekinist (trametinib) and it might have effect?

REPLY
Please login or register to post a reply.