Newly diagnosed with type 1 caused by keytruda- anyone else have this happen? ( I’m being treated for lung cancer)
Did you report this event to your doctor? Adverse events are tracked and followed up by the manufacturers.
Absolutely! It’s quite rare - leave it to me! 
I’m having trouble getting the nurse practioner I see for my diabetes to understand that due to my cancer treatments sometimes food gags me. My oncologist is trying to get me in to an endocrinologist- appointments are a year out!
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I am sorry to hear that @boothompson please consider buying the book “Think Like a Pancreas “ it has good information about insulin and carbs. You can always substitute carbs if toast is hard to eat there’s always a little ginger ale, for example.
Thanks, I’ll definitely check out the book!!
@boothompson Welcome Elizabeth to the JDRF TypeOneNation Community Forum! You are welcome here to share your diabetes story and offer us management tips.
Yes, I have heard about what appears to be TypeOne, and is managed just as if it is T1D, diabetes caused by various cancer chemotherapy/immunotherapy drugs. This is a kind of diabetes in Classification 3 - there are four diabetes Classifications enveloping various kinds [6] of diabetes. One of my brothers was diagnosed in his late 70s with diabetes “caused by” his chemo - I’ve forgotten now the name of medication involved.
I was on 2 chemo drugs and immunotherapy, Keytruda. Because I had good test results my oncologist stopped one chemo in July and the second in August. I’m now getting an infusion of Keytruda every 3 weeks. Less than 1% got Type 1 diabetes from Keytruda in the clinical trials. Like I said, leave it to me!
I bought - and read- “Think like a pancreas”! Thank you so much for the tip! It is an awesome book!!
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This thread is two years old, so I hope those reading it might respond again. I too was diagnosed after being treated for cancer with Keytruda in a clinical trial and was told this happens to less than 1% of Keytruda patients. I’ve also been told by specialists who study this Type1 “variant” that it is often especially hard to manage—very volatile and unpredictable. (And one specialist explained why this is true for “immune checkpoint
inhibitor-induced” Type 1.) Type 1 plus cancer later in life is a lot to deal with! So looking for support, perhaps management tips, from anyone else out there who acquired T 1 this way. Thanks!
Hello @Keeko welcome to Breakthrough T1D. I hope you have reported this event to your doctor and specialist because adverse events are essential to document. As far as insulin dependent/ type 1, well a lot of us here are very familiar with controlling blood sugar with insulin, Key issues are monitoring blood sugar and managing insulin. Key concepts include an understanding of what carbohydrates are and where to find and how to count them, and replacing the insulin in your body by injecting long acting and fast acting insulin. Do you have an endocrinologist? A CDE or a nurse and a nutritionist can also be very helpful. If you read up in this thread you can see I recommend reading “Think Like a Pancreas”. I find it to be a big help. Over the last 46 years I went from different forms of glucose testing but now I use a CGM. Also over those years I used various forms of injected insulin but today I use an insulin pump. I recommend working with a n Endo and trying different therapies to find the one you like best. All forms of type 1 are difficult to control but it is manageable with practice. If you have specific blood glucose questions just post them and we’ll try to answer from our own experiences. 
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Hi Keeko,
When I began my cancer treatments- chemo, radiation and Keytruda- the % of people getting T1 was less than 1! It also killed my thyroid but given the alternative- I am Stage 4b metastic, lung cancer - I’ll take it.
I was taken to the ER by ambulance and my glucose was over 800!! I don’t remember the first 3 days in the hospital. I was given syringes and a vial of insulin and told to take a minimum of 10 units before eating anything! Needless to say I had numerous lows. Because I live in rural Maine there are no endocrinologists around. After 6 weeks I saw a “diabetes educator”. She insisted I get a pump. I did. For one year. I hated it! I felt tethered. I now self injection and am much happier (I think I’m a control freak - lol).
There is no rhyme nor reason to my glucose levels. I measure, weigh, etc. but every mouthful is different. I use Libre 3+ and Inpen plus a keep a journal. I have just reached a point where I have decided it is what it is. My newest diabetes educator gets upset with me because I would rather be low (60’s) than over 175 - I get short of breath and really sweaty when I’m high.
I participated in the Blue Circle Health program and it was a great experience. The endocrinologist, Dr. Gomberg, was a Godsend! I strongly recommend you connect with them!!
The book Think Like a Pancreas is a wonderful resource also.
It’s a journey I’ll have to say but…as I said before- given the alternative I’ll take it!
I wish you much luck and hope you can find your happiness!!
God bless, Elizabeth
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Hi Sharyn. I’ve got a family member in a similar situation, cancer treatment caused diabetes, things are going great for her because she’s been cancer free for a few years and even though she’s a type 1 because of damage to her islets her treatment is way more like a type 2, occasional tests with a BGM and insulin only when high have kept her and her care team happy. Just wanted to encourage you to advocate for yourself with your care team to treat you as you are instead of the label Type 1.
I recommend think Like a Pancreas too and the fourth edition just came out this year so if you look for it make sure you get the latest edition from your library or favorite bookstore. Think Like A Pancreas - 4th edition
Elizabeth, your strength, your very positive outlook, and your ability to “take-hold” and find your way are inspiring. You remind me of someone very close to me who has 3 or 4 autoimmune conditions [but NOT diabetes] three of which require chemotherapy. It is a long story that began with two thyroid cancer surgeries and very heavy radiation treatments.
I wish you well, and God Bless you.
You’re too kind. Quite honestly all credit goes to God. My first PET scan and MRI looked like I had Christmas lights scattered in me! I went for palliative treatments. I ended up having radiation in my shoulder and brain and chemo and immunotherapy, after 2 years my oncologist looked at my test results and said “I think we’re looking at a miracle! You’re in remission.” I still have one small spot in one lung but it is much smaller than what it was and has been stable for over a year.
At the beginning of this journey I fell to my knees and asked God to help me through. I have had so many people praying for me! God is truly great!!
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Thanks to all of you for the encouragement and detailed answers. Yes, my adverse event was automatically reported because I was in a clinical trial at Memorial Sloan Kettering when this occurred—and spent 11 days in their ICU after being admitted with DKA. I have had other adverse events too, including a reactive arthritis that at one year out is improved but had me hobbling for months, and an oral mucositis that still persists in bouts—blisters in the mouth that complicate eating and drinking and require topical steroids in the mouth…you can imagine how that affects diabetes control! And I had to be on both prednisone and methotrexate for months. Sloan Kettering sent me to the rheumatologist who treats all the inflammatory reactions from cancer treatments. I still see her when I am back there for cancer evaluations.
One other interesting thing—in my clinical trial there were to be NINE doses of Keytruda over a year. My T1 was triggered after just one. The important silver lining was that my immune system reacted so violently that it apparently put me into cancer remission—for which I am very grateful! Though I still hold my breath when I go back to NY every 3 months for tests.
I am in rural VT but do have UVM just shy of an hour away. So I do have an endo and work weekly through Zooms and my portal with diabetes educators who make constant changes to pump settings (Omnipod, and I would not go back to injections). Every setting change helps briefly, then causes something new. But I am grateful for their help. My G7 sensor went through a phase of multiple problems but seems better this past month. (I read about their problems online, hope Dexcom quality control is getting better.)
My biggest problem is the VERY high highs and also lows with alarms every night, little sleep as a result. Diabetes educators and endo keep trying to address but kind of shake their heads at this point. I will check out that 4th edition of Think Like a Pancreas. Thank you all for that recommendation! Any other management tips welcome. It seems this variant does not want to be tamed—at all.
And best of luck to all of you!
I’m new so don’t know exactly how,posting works…do not see the long post I just replied with. But forgot one thing—would love to know more about the Blue Vircle health program, which I had not heard of. Thanks!
hello @Keeko this site will auto-flag long responses from new users if they type too fast or if they cut-and-paste a long response. I just found it and cleared it so you should see your original response.
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Elizabeth, thank you for the recommendation to Blue Circle Health! I had never heard of this through any provider, research online, etc. I will sign up after the holidays, and really appreciate your mentioning this resource.
You’re very welcome!! It was a huge help for me - I’m sure you will find it helpful as well.
Good luck in your T1 journey!!
Sharon @Keeko , type “Blue Circle” in the search at the top of this page. That will lead you to topics about this wonderful service, which has now grown to 16 states.