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Hello and a question re: CML and total thyroidectomy

I would first like to introduce myself to the forum.   My name is Mark.  I'm 55 and live in Illinois, near St. Louis, Missouri, USA.   I am very recently diagnosed, chronic phase (May 2 officially,Apr 26 prelim), started 100mg Sprycel on May 12 (thank goodness for very good health insurance).  WBC was 33,000 in early April.  Highest WBC was a week ago at 50,700 and I'm down to 35,000 as of today. Other than doctor visits, I have not had any interruption in my work schedule.

I feel fortunate to have found this when I did, as I had virtually no symptoms and likely would not have seen the doctor for a physical for quite some time if I had not decided to have intraocular implants so that I would not have to wear glasses anymore.  The eye surgeon required a physical to make sure I was healthy enough for the procedure, and here I am.

I am quite interested to see if there are others here who have CML and have also had a total thyroidectomy.   Mine was removed in 2000 for follicular variant papillary carcinoma (the first time I heard, "if you have to have cancer, it's a good one to have..."), followed by an ablative dose of 250 millicuries of radioactive iodine.   In my initial review of TKIs, I have come across several references to increasing TSH levels and hypothyroidism, particularly in total thryroidectomy patients.    As my levels have been quite stable for well over a decade, I'm keen to keep a close eye on this and would be interested in other's experience.

I am trying to become informed so that I can become an aggressive advocate for my care.   I refused to allow my ENT surgeon or endocrinologist to just treat my lab results - insisting they treated how I was feeling - and I have no intention to change that tack on this new journey.     I am quite happy to have found this forum and have already gleaned a considerable amount of information and inspiration from it.

Thank you for sharing,

Mark

 

Hi Mark and welcome! I don't have any answers to your questions but just want to say hello to another American. I live in Montana and am same age as you. My diagnosis was in April 2017 so I haven't been at it very long, and have had a fairly unremarkable, mostly successful experience with imatinib. Best wishes to you! I'm sure others on this site will have good information for you.

Welcome Mark

My husband was diagnosed last Sept aged 50. We also live in the States in California but are originally from Uk and Germany. Paul had much higher counts than yours with an extended spleen and was also started on 100 mg Sprycel ( because of this) . Not able to speak to the question you asked but I totally share your view that you need to be able to advocate for yourself ( or spouse) when you have a rare and chronic condition. We pushed hard for a dose reduction at 6 months to 50 mg. In my husband’s case the side effects did seem to gradually build ( his main issue has been swelling round his eyes). Sharing the research posted here persuaded his oncologist to allow the dose reduction and he was very grateful for the info. 

Beat wishes to you,

louise 

 

 

 

 

 

I am very interested in your post.  I was diagnosed with CML in October via a routine blood test to find out why I kept having lung infections.  I'd already had a scan on my spleen but had been told it was a "fatty lump" - it was so large, you couldn't miss it.  My WBC was 330,000 and my spleen was 30cm!  I've been on dasatinib since November and my 6 month visit today showed that I am down to 0.46% BCR!  Result!!

Anyway, for the last two years I've been treated for overactive thyroid/goitre.  I take 5mg Carbamazole for this.  My Endocrineologist wants me to take the iodine therapy to get rid of the goitre.  I've asked what research has been done on CML/radioactive iodine and the answer comes back time and time again that no research has been done!  CML is rare and thyroid conditions are also rare.  together we make a really rare group!

I saw a surgeon last month to discuss thyroid removal and have dismissed this option.  I asked my Oncologist today is taking radioactive iodine would accelerate me into another type of leukaemia and she didn't know.   I will talk to the iodine team in due course, but am also thinking of just doing nothing.   I've been told that the 1000 + millicurie levels are those that can start to cause problems and can lead to CML, but the short answer seems to be that little or no research has been done as the numbers of people it impacts are minuscule!

Hi Mark, I'm in the UK diagnosed in 2007 so just past 11 years on imatinib, mainly on the standard 400mg dose but for the last 8 months on a reduced 200mg. Appointment next month to check I am still PCR undetectable.

Your story chimes with me because I had a testicular cancer 31 years ago when I was 30, and had 15 doses of radiotherapy over 3 weeks. Although we will never prove it I believe that the RT was the root cause of my CML. The letter from my oncologist which confirmed the diagnosis to my GP said " I note his previous diagnosis of testicular cancer which was was treated by radiotherapy".  I have seen research which says incidence of CML is higher for those with previous radiotherapy, but can't remember reading about a thyroid patient being diagnosed.

Welcome to the club none of us wanted to join, and I hope that your TKI treatment means that, like me, if you had to get two different cancers you got ones neither of which will kill you.

The following may be of interest to you.   There is a link at the bottom of the abstract to the full text.  

Thyroid dysfunction caused by second-generation tyrosine kinase inhibitors in Philadelphia chromosome-positive chronic myeloid leukemia.
Kim TD, et al. Thyroid. 2010.

https://www.ncbi.nlm.nih.gov/m/pubmed/20929406/

I’m certainly going to ensure that my TSH/FT4/FT3 levels are monitored through this journey more frequently than annually (annually being the frequency that I’ve been on for many years now).   Since the symptoms of hypothyroidism are similar in many ways to some of the reported side effects of Dasatinib (and other TKIs) I want to make sure we are focusing on the right thing should something arise    

 

 

 

I had a subtotal thyroidectomy for what turned out to be benign adenomas, in 1979.  Like you, I was diagnosed with CML inadvertently, on a routine physical, in 2009.  On Gleevec at first and later on Sprycel, I have increasingly presented all the clinical symptoms of hypothyroidism, BUT my TSH continues to go in the other direction, toward hyPERthyroidism.  They keep cutting my levothyroxine back.  So, I do wonder sometimes if this is a false reading, or rather not a false lab result but a false effect, i.e., not truly pathological.  Anyway, I don't know, they don't know, and you will find as you continue on this journey that that happens a lot!

Quite Interesting.  

As part of my treatment for thyroid cancer part of the protocol is TSH suppression.    While I’m no longer kept below 0.5 (heart palpitations were a bit much) I’m still kept in the very low end of normal - right around 1.

I had thyroid labs drawn by my endo in March but so far the hematologist has not ordered a follow up.   I’m almost two weeks into the Sprycel and will be asking him to have my thyroid levels checked.   I would really like to either find an Endo with CML patients or a hematologist with thyroidectomy patients, but as noted earlier there aren’t many of us out there, so I’m not holding my breath.