Has Anyone Had A Total Thyroidectomy During A Pause Of Consolidation Treatment? | MyMyelomaTeam

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Has Anyone Had A Total Thyroidectomy During A Pause Of Consolidation Treatment?
A MyMyelomaTeam Member asked a question 💭

DarzalexFasPro Kyprolis and 20mg of Dex will have been paused for 19 days before surgery.

posted March 11
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A MyMyelomaTeam Member

I want to share my total thyroidectomy experience with you. Keep in mind it happened well before I learned that I have SMM. The first thing you should know, if nobody else has told you, you will probably experience ups and downs with calcium and magnesium levels. And those can be severe if not monitored. Making sure that the parathyroids remain either intact or are being reimplanted is crucial. If they need to be removed, you should discuss your post-op wellness with your PCP so you have full awareness of what you are facing. This information is not meant to upset or worry anyone, it is happening because your body has to adjust to no longer having a thryroid. My PCP told me ahead of the surgery it can take 1 - 2 years before the body adapts - and it did.

posted March 11
A MyMyelomaTeam Member

I understand! I will tell you this....there is a chance even if they remove the thyroid that some of the thyroid tissue could grow back. So monitoring is key to success. Annual ultrasound diagnostics should always be on your radar to see if there is regrowth. My surgeon explained that that there is always a chance that not all the tissue is removed. They'll probably place you Letho thyroxin or Synthroid to keep your electrolytes balanced. Electrolyte imbalance is very common with thyroid removal. And the symptoms are different for most people, but recognizing low calcium, magnesium etc. will be key to manage progress. And, if you have to take calcium and magnesium, take them at least two hours apart so your body doesn't fight for absorption. Calcium supplements to take together are calcitriol and Vitamin D 3. It is important to monitor Vitamin D3 as it can become toxic, so bi-annual blood tests for D levels is critical. Hope all this helps.

posted March 12
A MyMyelomaTeam Member

Did you have any problems swallowing pills....just pills? Just asking but assume that it probably is not a symptom related to my thyroid. I only get my thyroid checked once a year now. It used to be every three months; not sure why. I hope the alternative prescription works well and doesn't give you any yukky side effects.

posted March 11
A MyMyelomaTeam Member

Oh yes I sure did. Some of the symptoms that are dead giveaways are muscle fatigue especially in the upper back, and funny feeling around the lips and sometimes one side of the face will have dropping. And feel yuck overall.

posted March 11
A MyMyelomaTeam Member

Isolde, Hello!!
Every once in a ;while I wonder about my thyroid. Besides the calcium and magnesium, did you have any symptoms....physically?

posted March 11 (edited)

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