Newly diagnosed type 1 after immunotherapy cancer treatment

[Ruth1961]

Hello everyone.
I am a new type 1 diabetic, having had a very severe DKA 3 weeks ago caused, they think, by my immunotherapy cancer treatment 'frying' my beta cells in my pancreas. I've found the last few weeks scary, with my blood glucose very high, and hard it seems to bring under control. I spend most of the day over 15, average over 19, and occasionally drop into the 'green zone'. I have also had 2 hypo's so far, with very high glucose dropping rapidly to a hypo within an hour.

I am on levermir 16 units at night, 26 units during the day, and 6 units of fast acting 3x per day with meals.

Will this eratic and scary pattern settle down?

thank you!
Ruth

 

[Pipp]

Just saying “Hello and Welcome”. So sorry you are going through this. As I have T2, without personal experience of T1 issues, I have no knowledge that can be of use, but I am certain you will soon have replies from our friendly, T1 members.

Wishing you well.

 

[Mathewted]

Well Ruth it's bitter sweet to see you here; on the one hand if having cancer was not a big enough challenge it appears you're treatment has caused diabetes, and in the other like @Pipp said I'm sure people will be only too pleased to help.

The newly diagnosed tend to have a so called honeymoon period where beta cells may still produce insulin. You can get a test for C-Peptide (a protein that binds to insulin I believe) which is indicative of insulin production.

It sounds like you have been given set amounts of Levemir and separately set amounts of fast acting and it would be interesting to know the process by which these were prescribed.

One thing I'd hope is that you should have priority access to both cancer and diabetes specialist nurses especially as I have heard - only through rudimentary research - high glucose and separately high stress is generally a poor environment to reduce cancer cell multiplication and that your diabetes may be affected in some way of which we are unaware by your immunotherapy.

If you haven't already I would really recommend getting as much time as you can with your oncologist, endocrinologist and aforementioned nurses to focus on well being in the context of both diagnoses.

On the sudden lows this, as you've probably found out can be really dangerous.

If this next bit sounds condescending then please forgive me but I'm assuming you have not been advised how to count carbohydrates. If you are consistently giving 6 units at a meal but are having variable meals then this may cause problems. In the extreme if you give 6 units and your glucose level comes back to the level it started before you ate say, a baked potato with salad and then a banana, but the next day you gave the same injection but only eat green salad (no carbohydrate) your glucose levels are likely to plummet. If you're taking a fixed dose then fixed amounts carbohydrates nay help.

Generally I imagine your dietician has advocated eating real food with lots of vegetables rather than ultra processed products at the other extreme but if not I'd suggest asking about that in general terms but would expect that to be of benefit to most people.

It would probably be helpful to the community to understand how you have to manage your lifestyle, specifically insulin dosing regimen and dietary advice you've received with these two serious diseases.

I do hope this helps but will look in on the thread later as I'm sure you'll have lots else to read.

All the very best

Mat

 

[Ruth1961]

Thank you Mat
I had a very severe DKA 3 weeks ago, and I think they think it is taking a while to settle down, but you are right my last immunotherapy dose was on 6th July, one week before the DKA, and may still be effecting things...the effect is cumulative. I was in hospital for 10 days, where they just set the nominal bolus dose of 6 units with meals, and have fiddled with Levemir. They are tweaking this every few days. In hospital I was on 12 units of Levemir twice a day. But the community nurses have increased this on discharge to 20 each, and now 30 in the morning and 20 at night. They have also just increased the bolus to 8 units. However despite 8 units, my glucose has increased to over 27 after lunch (soup and a brown bread cheese sarnie)...its a bit scary to be constantly this high. Ketones are between 0.1 and 0.2 so thats ok. My average glucose is over 15, and thats come down from an average of 19 a few days ago. I was only discharged from hospital one week ago, so I guess its early days....I am being trained to carb count on Wednesday apparently, I have been told to eat anything I want...but my diet is pretty healthy anyway, almost no processed foods and wholemeal bread/rice/pasta etc.

 

[Mathewted]

I see, yes it must be really challenging for you. Hopefully you'll see a diabetes specialist nurse and a dietitian at your carb counting sesh which will give you a much clearer picture of the impact specific food will have in terms of carbs alone. Getting focussed on the specific questions you have around diet and problems for which you're looking for solutions will at least ensure they address those to the best of their knowledge.

Perhaps you already have done so but if not then - amongst all the other things playing on our mind - you may want to research insulin and having a basal (Levenir) dose for Basal Metabolism and bolus (rapid acting) for meals or 'correction'. It's a steep learning curve and never ending as nuances occur in life and in medicine but well worth getting on top of the basics asap.

I suggest keeping us up to date in developments if only to get to grips with what your strategy is going to be medium term. Sounds like the short term, at least with respect to diabetes - is clear. It sounds like you have the mindset to beat the cancer and manage the diabetes optimally but what are your end goals health-wise (a rhetorical question if you like).

You can do this!