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Immunotherapy and Thyroid - NEED ADVICE

Immunotherapy and Thyroid - NEED ADVICE

Posted By
9/10/2019 7:12pm
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Replies: 19

Hi all,

Unfortunately my husband's cousin who lives in Henderson, Nevada had a toe amputated about a year ago. We didn't know about this until recently when we visited and his wife gave us the whole story. She also shared the picture with me before he had it looked at, of what it looked like before he sought treatment. Needless to say, when I saw it, I became was immediately beyond concerned. One of the worst I've seen and we know that melanomas on the toe and extremity can sometimes correlate to poor outcomes. The whole toe was bloody, disfigured and unrecognizable. Kelly, the patient, is a hard worker and most likely didn't want to get it looked at or worry the family. I'm not sure why, but it was another 9 months before treatment was discussed. I believe he is being seen at Kaiser in Las Vegas, but we keep trying to get him to come to Houston and MD Anderson. When we were there in August, they were just going in for the PET Scan results. As suspected, they found it had spread to his left groin and his adrenal gland which isn't great (PET scan showed mass with SUV 12.9). We recommended that he needed systemic treatment immediately and they discuss that with doctor ASAP and explained they need to see a specialist, not general oncologist. The general oncologist did start him on immunotherapy, I'm not sure exactly what but I suspect IPI/NIVO. i'm not sure how many treatments he has had, his wife is overwhelmed as they have found more spots and Kelly just got laid off and they have 3 daughters in college. they work hard but have minimal insurance coverage . They texted us and said they stopped his immunotherapy due to thyroid issue but I'm assuming the IPI (maybe the NIVO) has crushed his thyroid . I don't have much more information and we are trying not to overwhelm them with medical questions. My question is: What is the protocol now? Will they try to get the thyroid under control with synthroid and start therapy again if bloodwork shows improvement. How long does this normally take (6 weeks?). I'm so concerned since his original presentation was not good, the wait for therapy, and the aggressive nature of his spread. I will find out about BRAF status, we were asking them to ask the doctor this when we saw him in August, but I'm not sure. I will start researching this but I know this topic has been discussed on the board and wanted to get some immediate advice. I will also search through posts. He is young, in his early 50s and doesn't reach out much, so I think we need to make sure we advocate for him if him and wife will let us. They are two of the nicest people we have had the privilige of know and they don't like to burden people. Just devastated this is happening to them.

Thinking of Mike today as well and hoping had a good appointment with Hamid. We mentioned him to John's cousin as well since that is a short flight.

Many hugs to all of you and thanks for any guidance. I'm on a plane now but going to start looking into this.


Jackie <3

Hey Jackie,

So sorry you are having to deal with this....not to mention feeling for your cousin and his family. But, glad they have you in their corner. To my knowledge, there is no need to stop immunotherapy. Just a need to rapidly start snythroid to replace the needed hormone and follow blood work closely until levels are stabilized...should be checking Free T4 and TSH. Could be wrong....but that's what I'd want for myself or my loved one. Since it seems that they have stopped therapy....I'd be pushing that synthroid be started ASAP and re-start immunotherapy rapidly as well. Certainly would want him to be seen by a melanoma specialist...but you can only do what you can! Love and hugs!! Celeste


There are a few states that practice Integrative medicine and Nevada is one of them. Just a suggestion maybe you could have them looking into this
or search "Integrative medicine+melanoma"

Best wishes,

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Hi, everything Bubbles said is the same that I experienced. I did not stop immunotherapy, just jumped right in with levothyroxine. Free T4 and TSH levels checked before each infusion . Know that it takes a few weeks for the thyroid levels to get straightened out but it wasn't a problem in my case. I'm glad they have you and your husband for support!

Immunotherapy wiped out my wife's thyroid about a year into it (combo treatment). Oncologist put her on levothyroxine but did not stop or delay continued immunotherapy treatments. Took about 6-8 weeks to get the thyroid levels worked out with proper dosage, but she's been on that for a year now and all going well. I don't think I've heard of anyone stopping immunotherapy due to thyroid issues (which are very common in this treatment).

Jackie, as others have said, thyroid becoming underactive from therapy is an easy fix. But in rare cases it can become overactive, meaning it will produce too much hormone. This can be life threatening and is not that easy to fix. I'm thinking in such cases the protocol is to stop treatment and see if it improves. If not, there are things they can do like radioactive iodine, but they are not simple. Can you find out what is exactly an issue, too much hormone or not enough?

I agree with Ellie but also look that possibly there are other issues than just the thyroid. I have had a DILI (drug induced liver injury and they stopped my combo treatment while I was on high doses of steroids. This took 4 months including the weaning off period. Now. I am on Opdivo only.
Best wishes.

Thank you so much Ellie, wasn't even think hyper, so that will be on my radar now. I'm talking to Kelly's wife who is handling all the information, so I'll find out more hopefully and see. Hugs,

Jackie <3

I had the chance to speak with Kelly's wife. She is going to send me the various lab tests, scans, pathology, tonight. She wasn't at home when I spoke to her. But I now actually believe it IS hyper (and I guess what they call thyrotoxicosis). She mentioned the number .03 which makes me think she was talking about TSH . Will confirm more once I get copies of the labs. He is on Nivo only even though they originally asked about IPI/Nivo. He is not BRAF positive, but not sure if he is wild type or NRAS. He is seeing regular oncologist, but I think we are going to try to get him into MD Anderson. Will know more tomrrow.

Jackie <3

TSH of .03 is NOT good. Could be really dangerous. There are things they can do to manage hyper, but a lot of them are irreversible because they kill thyroid cells. So he might end up on levothyroxine supplement till the rest of his life. I would imagine they probably would want to see good evidence that nivo actually works for him before they go ahead. This is a harder situation that hypo. If it's that, I hope it resolves by itself and he is able to restart nivo. Please keep us posted!

Here's some info on "normal" TSH levels: "The normal range of TSH levels is 0.4 to 4.0 milli-international units per liter. If you're already being treated for a thyroid disorder, the normal range is 0.5 to 3.0 milli-international units per liter. A value above the normal range usually indicates that the thyroid is underactive. This indicates hypothyroidism."

So - a level of 0.3 is not that crazy and could be due to lab variability. That said, it all certainly warrants investigation, clarification and treatment as indicated based on those findings.

In thyroiditis, which can be caused by many things, you can sometimes get a "surge" of thyroid hormone (which is not really a surge, but more of a leaking) that leads to INCREASED thyroid hormone floating around - HYPERthyroidism - sometimes symptom-less, sometimes with full blown signs and symptoms, transiently, BEFORE the gland goes kerplunk and stops producing hormone - leaving the patient with HYPOthyroidism. Here is a link that is pretty good at explaining all of that:

I do not have the data to demonstrate that this is the method by which the thyroid is affected by immunotherapy, but it wouldn't surprise me. Bottom line, as you well know, until you know both the Free T4 and TSH numbers, as well as some sequential numbers of same, it will be hard to know what is happening.

Probably didn't tell you anything you didn't already know, Jackie. Hang in there. You are amazing! love, c

OOOOPS! Just realized that sneaky ZERO after the decimal is sitting there!! So......with a probable TSH level of 0.03 then it may well indicate that the pituitary is not making TSH. That can be because T4 levels are very high - OR - because the pituitary is failing. The missing piece as I noted above - is the T4. In the circumstance or immunotherapy - the most likely dx = hypophysitis. Which means that the pituitary is not able to make TSH, therefore it won't stimulate the thyroid to make T4 and you end up with HYPOthroidism and need hormone replacement. basically still need more info. Now that I've muddied the waters completely - I hope you and your cousin get answers and help soon!! love, c

Bubbles, you know a lot about thyroid ;-) I have autoimmune thyroiditis (Hashimoto disease) from genetics likely. I'm on thyroid replacement (hypo), but I know that people with Hashi can be anything, hyper or hypo or they can fluctuate between these. Some go from hyper to hypo so much that they need to have their thyroid removed. So what i am getting to is, isnt immunotherapy attacking thyroid sort of through the same mechanisms as the autoimmune diseases? If so then indeed he can go from hyper to hypo and back. Not the best scenario because the hyper state may be dangerous (or it may not be, we dont know). So how do you think docs handle that?

Not really my area of interest or something that I have spent a lot of time reading about, but if you go to the link I posted earlier today( a couple of respnses below this one) on this topic of side effects caused by using Ipi+Nivo you will find that Dr. Postow gets into a detailed explanation of how the thyroid react to immunotherapy and it is clearly at odds with your thinking on the topic. Dr. Postow's view not mine scine this is way over my pay grade!!!

They handle it as indicated by the patient's labs and status.

Here's an abstract that offers some insight:

Thyroid disorders induced by checkpoint inhibitors. Ferrari SM1, Fallahi P2, Galetta F1, Citi E1, Benvenga S3,4,5, Antonelli A6.

Immune checkpoint inhibitors are drugs that inhibit the "checkpoint molecules". Different types of cancer immune checkpoint inhibitors have been approved recently: CTLA-4 monoclonal antibodies (as ipilimumab); anti-PD-1 monoclonal antibodies (as pembrolizumab and nivolumab); and anti-PD-L1 monoclonal antibodies (as atezolizumab, avelumab, and durmalumab). The increased immune response induced by these agents leads to immune-related adverse events (irAEs), that can vary from mild to fatal, according to the organ system and severity. Immune-related endocrine toxicities are thyroid dysfunctions, hypophysitis, adrenal insufficiency, and type 1 diabetes mellitus, and are usually irreversible in 50%. In particular, hypophysitis is the most frequent anti-CTLA-4-antibodies-related irAE, while thyroid abnormalities (as hypothyroidism, thyrotoxicosis, painless thyroiditis, or even "thyroid storm") are more frequently associated with anti-PD-1-antibodies. The combination of anti-CTLA-4-antibodies, with anti-PD-1-antibodies, is associated with about 30% of irAEs. Clinical signs and symptoms vary according to the influenced target organ. Endocrinopathies can often be managed by the treating oncologist. However in more severe cases (i.e. in the presence of insulin-dependent diabetes, adrenal insufficiency, or disorders of gonadal hormones, or severe hyperthyroidism, or hypothyroidism, or long-lasting management of hypophysitis) an endocrinological evaluation, and a prompt therapy, are needed.

Here is a link that includes a PDF document that provides a complete algorithm for treating endocrine side effects:

But mrochelle's post on this thread below, answers it even more elegantly.

Melanoma peeps and their docs do what they gotta do. Overall, decreased thyroid function due to decreased function of the thyroid itself or decreased pituitary function (from hypophysitis) are the most common thyroid problems that immunotherapy induces. c

Sister Jackie! Wow! Im so sorry about your cousin (your cousin to!!) And now his meds are halted? It happens as youll learn, or already know!! As i like to quote a favorite cartoon pic with a text under it saying; Immunal Therapy, "Kills all The Things!" Concerning immunal therapies, in relation to your cousin, my Pembrolizumab (pembro) was stopped for a few weeks or less til my T4 & THS levels got right with the help of Livothyroxines (im at 250mgc now) but started back on the Pembro fairly quickly, plus when i did the Ipi/Nio combo & the Yervoy Fried my Pituitary gland, they halted infusions til my Hydrocortisone pills brought up my Cortisol levels, missed one infuse date (3 weeks i believe) thats it, I hope he evens out as soon as i did!! Hopefully LESS then what you thought at 6 weeks....Oh! Read my post about Dr. Hamid!! !!... love ya sis...

Melanoma Will Not Beat Me or my MRF Family!

Thank you all! And love you too brother Mike, so glad you saw the good doctor :) I'm having a phone call with Kelly's wife in about an hour to try to get more information about what is going on, as you know it's hard when you don't have all the facts. I'm not sure what is meant by thyroid (hypo or hyper) and if there were other factors to his treatment being stopped. Thank you Celeste (hugs always) and everyone, your information will allow me to even ask the right questions, it means a lot. Once I know more, may be posting again.

Going try to get him to take a trip here to Houston if possible.
Hugs everyone

Jackie <3

The combo killed my thyroid, been on hormones for 2 years and never missed a treatment.

Hi Jackie, here is a link that features Dr. Postow of Memorial Sloan Kettering talking on Research to Practice about side effects and if you go to 42:10 min mark he talks about side effects of thyroid with immunotherapy. You might have to sign up to research to practice but they don't spam you after and there is no cost!!! Ed

Greetings! I am new to this blog but not new to melanoma. I was on a trial @ MSK in 2014. My TSH skyrocketed to 155 (normal being 0.4 - 4.0) There was never a discussion of delaying a matter of fact I was told this was a positive consequence of well as the vitiligo from Keytruda and the oral lichen planus I developed along the way. I went from being hypo to being hyper and have lost 45 pounds in the last five years. It’s been troublesome keeping the TSH consistent.. I was told by my endocrinologist I would probably never put the weight back on and that has it’s own challenges....but endocrine fallout (adrenal, thyroid, pancreas etc) have been well documented in the ;past several years.
All the best to your brother-in-law.