Type 1 after cancer surgery and treatment

[Larry846]

Hi guys! Larry here. Had type 1 for about 2 years now and just lately getting fed up with it. Treatment induced type 1 I feel is badly served in follow up. I have a glucose to insulin ratio of 2:1 which is fairly constant, at about 8 units per session which normally keeps me, after meals at 7.5mmol. Food spikes about 12mmol max, but just lately has been jumping around! I have a good diet, have a binge occasionally, but mostly all fresh. I have this BEFORE type 1, so I needed little modification. However, recently, after a lot of cancer related surgery and immunotherapy, I have been on CO-CODAMOL for pain killers, and my control seems out of the window! Any ideas?
Thanks

 

[trophywench]

Well the thing about diabetes (of any sort) is that it never stays the same for ever so long and hence whatever dose(s) of insulin we are using to treat it will need adjusting to match.

I am not sure what you mean when you say that you take 8u per 'session' most of us take one or two jabs a day of a longer lasting insulin, our 'basal' dose and then take 'bolus' doses of a shorter acting insulin each time we eat or drink any carbohydrate. What actual type of insulin are you taking - brand names would be helpful. Also - who is actually overseeing your diabetes treatment - as opposed to who is overseeing your cancer treatment - is it a hospital diabetes clinic - or who? I ask that because Diabetes Specialist Nurses (the ones with a specific separate Uni Degree who work in hospitals full time and are hence very experienced cos that's all they deal with) are normally the best source of assistance with such things.

 

[Larry846]

Well the thing about diabetes (of any sort) is that it never stays the same for ever so long and hence whatever dose(s) of insulin we are using to treat it will need adjusting to match.

I am not sure what you mean when you say that you take 8u per 'session' most of us take one or two jabs a day of a longer lasting insulin, our 'basal' dose and then take 'bolus' doses of a shorter acting insulin each time we eat or drink any carbohydrate. What actual type of insulin are you taking - brand names would be helpful. Also - who is actually overseeing your diabetes treatment - as opposed to who is overseeing your cancer treatment - is it a hospital diabetes clinic - or who? I ask that because Diabetes Specialist Nurses (the ones with a specific separate Uni Degree who work in hospitals full time and are hence very experienced cos that's all they deal with) are normally the best source of assistance with such things.

Hi Jenny thanks foir the reply! I take 26 units of Lantus in the morning, followed by an after meal dose, twice a day of around 8 units of Novarapid, the dose varies according to meal spikes. As for support, no one! A visit to mouth patients every six months if they remember to send me an appointment! Other than that, nothing!

 

[trophywench]

Righty ho - do you live in outer Mongolia? - Never mind - wherever you are we can attempt to assist you. You MUST bear in mind that 99+% of us on here are not medically qualified but instead have various lengths of experience in dealing with our own diabetes day to day so are just passing on what has helped us or we've seen helped someone else, hence anything we pass on is purely a suggestion as to what might help someone else.

My first question is - what's your Lantus actually doing for you - have you ever done a Basal Test to find out? I ask because I hold that unless your Lantus actually holds you as steady as it can all day and all night - you are purely firefighting your BG with Novorapid the rest of the time and it's daft constantly fiddling with it instead of having any kind of certainty that it's likely to be the right amount you can rely on for a bit.

So, if you go to the 'search box at the top of the page and type in 'Basal Test' it will show you where to look.

 

[Larry846]

Hi Jenny! As you can see, up early! 5 every morning sadly, in my book, for no good reason other than "dawn syndrome'! Firstly, I should explain that I was diagnosed with cancer 5 years ago, a tumor on my right thigh, a Lypo Sarcoma, a rare form, which was removed. This was 3.5kg. The pre radiotherapy launched several nasty melanomas on the left side of my face and chest, which caused metastasis to my lungs. This was treated withe neck resections, lymph gland removal, and infusion of Keytruda, an immunotherapy drug, known clinically as pembroluzimab. This killed all the cancer in six months, but sadly destroyed my body's immune system and was not monitored properly. I was at a well known London Cancer hospital. Thanks to an Agency Nurse during pre infusion checks, the high glucose level was spotted via the rapid weight loss, 13kg in six weeks. An immediate decision was made and may treatment was halted, and I was immediately transferred the Chelsea and Westminster diabetes unit. The diagnosed type 1 treatment induced. I am an ex long term soldier and was exposed to extreme sun since 1970, and I am told that was when the damage started, in Oman.

Back to the type 1! The dose I am currently on for Lantus remains as is from what Chelsea prescribed. The two other mealtime doses through lack of any other supervision I adjust accordingly as a result of tests two hours after a meal. For example, a pre meal test normally would show 7.5-8.5 mmol, an hour after, a food spike of 12-14mmol a further hour, 10 mmol, and I I would normally inject 5-8 units which would bring me down to 5.5 to 7.5 mmol pre next meal. The few times I have spoken to diabetes nurses they have told me to also do a shot of Nova rapid after breakfast, but I have found I go into Hypo by 11am!

Hope this makes sense!

Thanks!

Larry

 

[rebrascora]

Hi Larry and welcome.
I am sorry to read that you are battling cancer .... and then diabetes on top of that, must be making things pretty tough.
What I find odd is that you take the NovoRapid after food. I am not sure if there was a specific reason for this advice but most of us take it before food and breakfast time is the most difficult time of the day to get the timing right.
I assumed that you must only be eating 2 meals a day if you were just taking 2 shots of NR but it sounds like you are eating 3 meals but only bolussing for 2. Most of us need a higher ratio of NR with breakfast than any other meal and I find that I need to inject it an hour before I eat breakfast and then about half an hour before lunch and dinner. Unless you suffer from some digestive problem then I would try injecting your insulin just before you eat and see how that goes and then perhaps experiment with maybe 10-15 mins before you eat until you find the point at which the insulin is hitting your blood stream at the same time as the glucose from your food.... this involves a little more frequent testing until you figure it out. ie. Inject the insulin and have the food that you are going to eat ready, then test at 10 min intervals until you start to see your BG decrease and then eat your food.
I think you need to get in touch with your GP surgery and get an appointment with the practice nurse who monitors the diabetics at the practice and ask to be put on a DAFNE (Dose Adjustment For Normal Eating) course where they will help you to figure out the best way to make use of your insulin and/or ask to be referred to the Diabetic Clinic/Consultant. You should not be left trying to manage this without a support network.

 

[silentsquirrel]

Hi Larry

Welcome to the forum, sorry to hear about your problems.
Your recent erratic blood glucose levels may be due to the pain and stress of this, and/or to any of the medications you are taking, You do need to get expert help to sort this issue. Have you been seen for a Diabetic Review at Chelsea since these recent problems? If not, make an appointment as soon as you can.

Your use of Novorapid is very unusual, and the timing of your injections will not be helping. Normal practice is to inject BEFORE a meal, either just before eating, or perhaps 10 - 20 minutes before (longer for some people, especially before breakfast). The only reason to inject after a meal would be if you did not know what you were going to eat eg when eating out, or if your appetite is unpredictable. You do not want to inject the right amount for a meal and then find you can only eat half of it. But in that case, you would inject immediately after eating, not 2 hours later!

 

[silentsquirrel]

@rebrascora got there first!

I am tagging some very experienced T1s - I am T2 (although on insulin for a long time) and @rebrascora is fairly newly diagnosed, so perhaps we are missing something!

@everydayupsanddowns , @mikeyB , @Northerner - any ideas?

 

[Larry846]

Hi Larry and welcome.
I am sorry to read that you are battling cancer .... and then diabetes on top of that, must be making things pretty tough.
What I find odd is that you take the NovoRapid after food. I am not sure if there was a specific reason for this advice but most of us take it before food and breakfast time is the most difficult time of the day to get the timing right.
I assumed that you must only be eating 2 meals a day if you were just taking 2 shots of NR but it sounds like you are eating 3 meals but only bolussing for 2. Most of us need a higher ratio of NR with breakfast than any other meal and I find that I need to inject it an hour before I eat breakfast and then about half an hour before lunch and dinner. Unless you suffer from some digestive problem then I would try injecting your insulin just before you eat and see how that goes and then perhaps experiment with maybe 10-15 mins before you eat until you find the point at which the insulin is hitting your blood stream at the same time as the glucose from your food.... this involves a little more frequent testing until you figure it out. ie. Inject the insulin and have the food that you are going to eat ready, then test at 10 min intervals until you start to see your BG decrease and then eat your food.
I think you need to get in touch with your GP surgery and get an appointment with the practice nurse who monitors the diabetics at the practice and ask to be put on a DAFNE (Dose Adjustment For Normal Eating) course where they will help you to figure out the best way to make use of your insulin and/or ask to be referred to the Diabetic Clinic/Consultant. You should not be left trying to manage this without a support network.

Thanks Barbara! I to try and do what I can myself, as local support for type I is non existent. I live in Thurrock. GPs are a somewhat slipshod affair. My partner Sue, who has Lupus and APS, has a terrible time getting a doctor to listen and understand as do I! They spend most of the appointment trying to persuade me I have type 2! I was advised that I could take Nova rapid before or after meals, and aim for between 5 and 9 mmol. I also had kidney infections probably due to to high blood sugar 7 years ago, before the cancer and I ended up with retention which caused me to be fitted with a catheter, which remained in place for five years before I finally got BPH surgery last year after it had caused three bouts of sepsis. This illustrates the lack if support. I went to see my doctor with what I thought was a small skin cancer on my upper right ear, and she gave me some cream. I was concerned that as I had melanoma giant cell on my left neck previously which was excised under general anaesthetics with all lymph glands removed on two occasions, due to infection and delay in treatment. I went on two appointments at the hospital dermatology department who dismissed it as a skin legion. Two weeks ago they cut off half of my right ear. Not happy! Which is why I need this site.

My earlier life was spent in the Army in hot climates, fair hair and skin and blue eyes, a recipe for damage.

I will try your recommendations Barbara, and see how I go. I do test for ketones on each occasion which is always .5. I am on treatment for treatment induced Atrial Fibulation via Rivaroxiban and Bisoprol, and Indapamide. Could any if these be reacting with insulin?

Many thanks for your interest and help.

 

[Larry846]

As a footnote to illustrate lack of support, unrelated to diabetes but illustrative..when they cut my ear off, I had to travel to a specialist skin cancer hospital for an overnight stay on general anaesthetics! When I got there, the place was in disarray and dysfunctional. They cancelled my general and decided to use local, just with a relaxant. They numbed my ear which made me sleepy, then cut my ear off halfway down with snips. The awful thing was that I could HEAR them cutting my ear off. It took about eight minutes. They then took me back to a ward and said they would send me home. I had come by patient ambulance and they said they would send me home by the same. The ambulance never came despite them calling the service. I waited 6 hours! Then they said they would send me home by cab, but then could not get it authorised. I had to pay £62 cab fare as the hospital was in Chelmsford.. No public transport direct route ( I am now disabled) so I had a great NHS experience!
DON'T GET ILL IN ESSEX!

This is why I need help from you guys, for which I thank you in advance!

 

[rebrascora]

Hi again.

I am sorry to hear your NHS experience has been so poor but you really should be referred to a specialised Diabetes clinic. I cannot advise on the medicines you mention as I have no medical or pharmaceutical training or personal experience of them. perhaps someone else will know about them.
I don't understand which occasions you mean when you say...

I do test for ketones on each occasion

It is testing your blood glucose which is important unless your BG is 15 or over and then it is important to test for ketones.... do you test your blood or your urine for ketones?
I usually test my BG first thing in the morning and that reading helps me to decide how much NovoRapid I am going to inject. I usually need two units even if there are no appreciable carbs in my breakfast (ie a mushroom omelette) due to the dawn Phenomenon plus a correction unit if my fasting reading is around 10 as it was this morning (I was out for a meal last night and miscalculated the amount of carbs). If I am having a Nature Valley protein bar for breakfast which contains just under 10g carbs, I have 3 units plus a correction unit. If I am below 8 I don't use a correction unit. If I was 13, I would give myself 2 correction units, plus the two to compensate for Dawn Phenomenon plus whatever units I needed for carbs at a 10:1 ratio. I give myself the bolus injection as soon as I wake up and then potter on for an hour or so with a cup of coffee and cream until the insulin starts to work and then I eat my breakfast. Lunchtime is the same but I just inject half an hour before I eat and I don't need any extra insulin for the dawn phenomenon as it has passed by then. I use the same 1:10 ratio. Similarly on an evening, I inject my bolus insulin and then cook the meal and assuming it is just something which will take half an hour to be ready. I keep my carb intake low to reduce the risk of hypos and if I do have a hypo, it responds very well to treatment and I have not had any recurring ones.
A typical day's food for me would be....
a 2 egg mushroom omelette with onions courgette, peppers and cheese with a large side salad including salad leaves a couple of cherry tomatoes, cucumber and avocado.....no bread or toast or potatoes/hash browns
Lunch of a chunk of cheese and a few nuts or olives.... no appreciable carbs so no NR injected unless my pre lunch reading is high and needs a correction.
Dinner is meat or fish, with cabbage/kale/leeks cooked with a knob of butter and served with a dollop of cream cheese, broccoli, or runner beans and/or home made ratatouille with a couple of small potatoes or sweet potatoes followed by a few fresh raspberries with cream or a creamy natural yoghurt... I give myself 4 units for this and inject before I start cooking.
High meat content (80%) sausages or gammon with cauliflower cheese is a prime favourite.
Tonight's dinner is salmon fillet pan fried in butter (and served with lemon juice) with aubergine and creamed spinach and broccoli and a couple of pieces of sweet potato.
I hope that gives you some ideas. This works for me, but there is no guarantee it will work for you. More frequent testing is really important if you are going to experiment with the timing of your NR injection and you should have good hypo awareness.

 

[Larry846]

Yes I test blood for ketones! I am using a Menari Ario machine.

Thanks for all the info

 

[everydayupsanddowns]

Hope you find a way to get your BGs a little more stable.

TW’s suggestion of fasting checks to see whether your basal insulin (lantus) is still correct for you. It would be very unusual for my basal insulin requirement to remain the same for 2 months running, let alone 2 years!

The fact that you are not needing to inject for breakfast may indicate that your basal dose is too high for you - but that’s just a guess and you would need to check to know for sure.

I would also echo the comments others have made about dose timing. While your spikes are not really extreme, ideally it would be better to peak at 9-10 rather than 12-14 and taking your NovoRapid before eating (even waiting a while after dosing before eating) could well help. But again... everyone is different, and it’s really a question of working out what works well for you.