Diabetes, steroids and immunotherapy

[RJN123]

Hello all, glad to find this forum as my head is totally scrambled. I have been on immunotherapy for stage 4 lung cancer the last 2 years. It has worked well, and the cancer is mostly gone. However, a few months ago I was diagnosed with diabetes Type 2. I have no risk factors, so some of my endos think it is treatment related and others are not sure. I was initially put on 2x1mg metformin. Last week, I had both my adrenal glands removed, and now on steroids for life, so they added in gliclazide. The surgery was very long and my blood sugars were all over the place for 24h after. Between my new steroid dependency and new diabetes I am feeling quite vulnerable and hoping I can get some tips here and there. I am only 50, and until two years ago, I was fit, healthy and never had any medical issues, so it’s all a bit daunting.

First question: I am meant to check my blood sugar 3-4 times a day, but really struggling with the meter (AgaMatrix Jazz). I keep getting error messages, so each test takes 4-5 tries and I end up with horribly bloody fingers. I know this isn’t normal, so I hope to request/buy another device. Any recommendations? My diabetes nurse is trying to get me a Libre 3, but as there is disagreement as to my type I am not sure I qualify.

Second question: I am receiving my primary diabetes care at UCLH where they will also monitor my steroids and treat cancer. But my GPs diabetes nurse is great, so I would prefer to hang onto her. Any views on consolidating/splitting care?

Thanks all - feeling super overwhelmed!

 

[Lucyr]

First question: I am meant to check my blood sugar 3-4 times a day, but really struggling with the meter (AgaMatrix Jazz). I keep getting error messages, so each test takes 4-5 tries and I end up with horribly bloody fingers. I know this isn’t normal, so I hope to request/buy another device.

I use this meter, which error code is it? There’s a list in the manual of what they mean. Cold temperature is the only one I regularly get, and put the meter under my armpit/knee/in a pocket for a bit before testing when it’s cold

 

[RJN123]

It’s E2 and E6 primarily. I looked in the manual. The issue is how super sensitive it is, so my samples never seem to be good enough, so I’d like to try something else.

 

[Leadinglights]

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Hello all, glad to find this forum as my head is totally scrambled. I have been on immunotherapy for stage 4 lung cancer the last 2 years. It has worked well, and the cancer is mostly gone. However, a few months ago I was diagnosed with diabetes Type 2. I have no risk factors, so some of my endos think it is treatment related and others are not sure. I was initially put on 2x1mg metformin. Last week, I had both my adrenal glands removed, and now on steroids for life, so they added in gliclazide. The surgery was very long and my blood sugars were all over the place for 24h after. Between my new steroid dependency and new diabetes I am feeling quite vulnerable and hoping I can get some tips here and there. I am only 50, and until two years ago, I was fit, healthy and never had any medical issues, so it’s all a bit daunting.

First question: I am meant to check my blood sugar 3-4 times a day, but really struggling with the meter (AgaMatrix Jazz). I keep getting error messages, so each test takes 4-5 tries and I end up with horribly bloody fingers. I know this isn’t normal, so I hope to request/buy another device. Any recommendations? My diabetes nurse is trying to get me a Libre 3, but as there is disagreement as to my type I am not sure I qualify.

Second question: I am receiving my primary diabetes care at UCLH where they will also monitor my steroids and treat cancer. But my GPs diabetes nurse is great, so I would prefer to hang onto her. Any views on consolidating/splitting care?

Thanks all - feeling super overwhelmed!

t sounds as if you have got too much blood and it has over filled the reservoir in the strip. You only need a very small drop,usually no more than the size of a pin head. Do you have your lancing devise set too deep.

 

[Lucyr]

It’s E2 and E6 primarily. I looked in the manual. The issue is how super sensitive it is, so my samples never seem to be good enough, so I’d like to try something else.

Error 2 sounds like user error (inexperience) not filling the strip well enough. That won’t be solved by a new meter it’s just practice. Are you holding the strip to the blood long enough to fill the test window?

Error 6 sounds like maybe not filling the strip quickly enough. Call customer service if that one continues as it shouldn’t be too cold.

 

[everydayupsanddowns]

Sorry to hear about your diagnosis, and the complexities of your case (but glad yo hear your cancer has responded well to treatment!).

The loss of adrenal glands must be a bit of a nuisance. I guess that gives you a sort of surgical version of Addisons? Long term member @Pumper_Sue may be able to offer si e suggestions as she has lived with Addisons for years.

Hope you can find a meter that suits you better than the Agamatrix. Many members here like the SD Gluco Navii or the Spirit Tee2 which are reliable and have affordable strips for those self-funding.

I have divided my care between specialist centre for insulin pump / CGM stuff, and GP for more routine (BP, weight, toe tickle) checks. Saves some of the travel faff of getting to the hospital 🙂

 

[RJN123]

Thank you @everydayupsanddowns - very helpful. It would be good to connect with @Pumper_Sue as the interaction between diabetes and steroids (and in my case immunotherapy) is quite complex. And yes, I guess I have a sort of surgically induced Addison…

I think I’ll see if I can do something similar to you. My GP and their diabetes nurse have been wonderful, and I could do with a bit of sympathetic support day-to-day right now. On the other hand, I prob need the specialists support for various endo challenges to get everything balanced. Thankfully, I live close to the hospital and go there anyways for cancer stuff.

Question: I see that you self-fund the Dexcom - as T1, shouldn’t you get this on the NHS? Also, why Dexcom? I have just ordered a Libre 2 from Abbott on trial, as I feel it could help me get my head around diet and exercise, at least for a few months. My DN is trying to get me a Libre 3 (think she feels sorry for me and the absolute onslaught of medical stuff I have to cope with).

 

[everydayupsanddowns]

Question: I see that you self-fund the Dexcom - as T1, shouldn’t you get this on the NHS? Also, why Dexcom? I have just ordered a Libre 2 from Abbott on trial, as I feel it could help me get my head around diet and exercise, at least for a few months. My DN is trying to get me a Libre 3 (think she feels sorry for me and the absolute onslaught of medical stuff I have to cope with).

Guidelines on CGM and continuous sensor use in T1 have changed a lot in recent months.

I have been able to get Libre2 on prescription but up until my last pump clinic appointment (July 2022) my local health authority offered rtCGM to almost no one (this was a particularly bruising knockback some years ago). And it is Dexcom G6 I need to pair with my tSlim insulin pump as part of a hybrid closed loop system.

However! The funding situation has now changed, and I’ve been assured by one of the DSNs that I can get sensors on the NHS. Wahoo!

I just need an appointment now to get that sorted.

 

[RJN123]

Thank you. I looked at your site, and it looks incredibly helpful. I have downloaded the Diabetes Etiquette and think I’ll steal bits of it for my immuno/cancer forums. Made me almost emotional as it is so, so true.

 

[Pumper_Sue]

Hello all, glad to find this forum as my head is totally scrambled. I have been on immunotherapy for stage 4 lung cancer the last 2 years. It has worked well, and the cancer is mostly gone. However, a few months ago I was diagnosed with diabetes Type 2. I have no risk factors, so some of my endos think it is treatment related and others are not sure. I was initially put on 2x1mg metformin. Last week, I had both my adrenal glands removed, and now on steroids for life, so they added in gliclazide. The surgery was very long and my blood sugars were all over the place for 24h after. Between my new steroid dependency and new diabetes I am feeling quite vulnerable and hoping I can get some tips here and there. I am only 50, and until two years ago, I was fit, healthy and never had any medical issues, so it’s all a bit daunting.

First question: I am meant to check my blood sugar 3-4 times a day, but really struggling with the meter (AgaMatrix Jazz). I keep getting error messages, so each test takes 4-5 tries and I end up with horribly bloody fingers. I know this isn’t normal, so I hope to request/buy another device. Any recommendations? My diabetes nurse is trying to get me a Libre 3, but as there is disagreement as to my type I am not sure I qualify.

Second question: I am receiving my primary diabetes care at UCLH where they will also monitor my steroids and treat cancer. But my GPs diabetes nurse is great, so I would prefer to hang onto her. Any views on consolidating/splitting care?

Thanks all - feeling super overwhelmed!

Hello and nice to meet you @RJN123
Wow you sure have gone through the mill haven't you?
With your blood sugar machine do make sure you are using your finger poker correctly so enough blood lands on the test strip. If you are having major problems firstly ask your surgery nurse to show you how to use it and if still difficult an alternative should be provided for you.
Not sure how to describe your Addison's as know if they go defunct from steroid use it's called secondary Addison's. But hey ho you have Addison's no matter which way you look at it. Have a look on here https://www.addisonsdisease.org.uk/surgery loads of info to help you out.

I'm assuming you take Hydrocortisone (HC) and take your bigger dose first thing. I find my blood sugars tend to rise a couple of hours after I have taken the HC.
As you are not on insulin I would suggest that if your blood sugars go low and wont go up again after a carb boost then you need a bit more steroid to help you out.
Do make sure you have been given an emergency steroid injection pk as it could save your life.
Also do make sure the plonky surgery gives you needles and a syringe so it can be used.

 

[RJN123]

Thank you, Sue. All very useful advice. I actually cannot believe they didn’t give me the emergency pack before they discharged me… but off to DNS today, so guess I can ask her to get a prescription in. Glad to be in touch - throughout my immunotherap, the various forums have been so important, and now I get to add another two batches of helpful people (Addisons and diabetes).…

 

[mbmep]

Hi, my husband has immunotherapy induced diabetes. He is treated as if he is a T1as a c-peptide test showed he produces very, very little insulin. He may also now have developed Addisons and is having further tests for that. It's such an enormous blow but at least his cancer (mesothelioma -incurable, asbestos related) has been knocked back. It's good to find other people with the same thing so I hope you don't mind if we keep in touch.

 

[RJN123]

Hi, my husband has immunotherapy induced diabetes. He is treated as if he is a T1as a c-peptide test showed he produces very, very little insulin. He may also now have developed Addisons and is having further tests for that. It's such an enormous blow but at least his cancer (mesothelioma -incurable, asbestos related) has been knocked back. It's good to find other people with the same thing so I hope you don't mind if we keep in touch.

Of course! I now finished my immunotherapy and have had clean scans for six months, largely got my diabetes under control, and feeling pretty normal with the steroids. So all in all landed well (at least for now - like your husband I am classified as incurable), and I am living a normal life with just a few tweaks. If you have specific questions on Addisons and Immunotherapy, there are a couple of really good Facebook groups which has helped me loads as well. There are a couple of mesothelioma folks in there as well.
Keep us posted on how you get on!