A little advice needed...

[Tomd86]

Hello all, I'm new here and just looking for some advice.

I've only recently been diagnosed as type one (July 2020) and the Drs put it down to being related to my cancer treatment.

Almost immediately, I had great control over my glucose levels as they put me onto carb counting within a few weeks. However a month ago i restarted chemotherapy which requires me to have a good dose of Dexamethasone and a drip of glucose over 2.5hrs. As you can imagine my blood levels go through the roof and are hugely difficult to get back down, usually taking the next week to bring back down. The Dexamethasone leaves me with very blurred vision and the chemotherapy itself leaves me feeling rather poorly, as if im constantly having a hypo.

I'm checking my blood levels more often due to not knowing if its the chemotherapy or a hypo, and getting sore fingers. And of course, I'm eating what ever I can taste and stomach which doesn't help.

Can anyone recommend any tricks or tips that might help me with the above?

Sorry for the essay!

TiA
Tom

 

[Sally71]

Oh that sounds horrible, poor you
My first thoughts are if that was my daughter I’d increase her background insulin to cope with the extra glucose until she came down again. Easier for us as we are on a pump, could you ask your diabetes team about doing this? Do you know how to do correction doses with your fast acting insulin? Do the cancer team know you have diabetes?

Eating whatever you can stomach doesn’t sound so terrible if you are carb counting, it sounds like the effect of the chemo is that you need more insulin though so speak to your doctor about maybe adjusting your doses during this time.

The other thing is, ask about getting a Freestyle Libre, it's a sensor that sits on your arm and reads your blood glucose level and you just have to wave a reader at it to find out your blood sugar. It's not as accurate as a finger prick, but close enough most of the time and would tell you if you’re high or low or in range and whether you are rising or falling, and would save you quite a lot of finger pricks. It's possible to get them on prescription, although you might have to jump through some hoops to get there, you can buy them from the manufacturer in the meantime if you can afford it.

Good luck 🙂

 

[Tomd86]

Hi Sally,

Thanks for your reply.

My oncology team have mentioned about increasing my Glargine to 10units per evening rather than 8units. However, they want me to speak to my diabetic consultant first, which is proving difficult. They're both aware of my conditions, however, won't talk to one another, so whilst getting my head around the basics, I'm also trying to be the middle man of the two doctors also.

My dietician has asked my diabetic team about the Libre, however they won't allow me to have it due to being newly diagnosed.

Its all a bit of a minefield really ‍

Thank you. Tom

 

[rebrascora]

That is really shocking! They should have a rocket put up their backsides!
There were people on my DAFNE course who were given a trial of Freestyle Libre when they were newly diagnosed and it is possible to self fund it without any real training or experience so there is no real medical reason why they couldn't at least give you a trial of it particularly considering your very difficult circumstances! I guess the diabetes teams may be rather busy in the general wards and ITU at the moment with Covid causing problems with BG levels for diabetics with severe symptoms but many of us have still been getting our consultant reviews albeit by telephone. Have you contacted your diabetes hospital helpline and explained the situation?
The points that @Sally71 has made are exactly my thoughts too on how to go about managing it but you really need the support of your clinic, particularly being newly diagnosed... keep pestering them. I know I hate to do it but sometimes you have to fight your own corner with these things at least as far as the Glargine adjustment. If you can afford to self fund even for a short while, the Libre will make things much easier. Maybe something Santa could help with if you have relatives who normally buy presents and could possibly club together.... I used my birthday money to self fund it initially.

 

[Tomd86]

Thank you for your input. I'm frustrated with it all tbh, I do agree with the rocket. I just feel as though both teams are such nice drs, id hate to get on the wrong side of them and pester them. But I agree. I need to get over that I guess.

I didnt realise they gave them to newly diagnosed people like that, I may use that in my argument.

May I ask, what's a DAFNE course?

Unfortunately, at the moment, I couldn't afford to self fund it. Due to the cancer, I havent been able to work since July 2019.

Could I get myself into a mess if I were to adjust my Glargine without speaking to the Dr?
I understand the fast acting insulin, but very little about the background one.

Tom

 

[Sally71]

Hi Sally,

Thanks for your reply.

My oncology team have mentioned about increasing my Glargine to 10units per evening rather than 8units. However, they want me to speak to my diabetic consultant first, which is proving difficult. They're both aware of my conditions, however, won't talk to one another, so whilst getting my head around the basics, I'm also trying to be the middle man of the two doctors also.

My dietician has asked my diabetic team about the Libre, however they won't allow me to have it due to being newly diagnosed.

Its all a bit of a minefield really ‍

Thank you. Tom

Oh FFS that makes me MAD, what has being newly diagnosed got to do with it?! If you are capable of pricking your finger and understanding the result then you are capable of using a Libre, it's hardly rocket science. We'd have loved it if they were available when my daughter was newly diagnosed! We have recently switched to Dexcom sensors and have one unused Libre left over, I kept it initially in case we didn’t get on with Dexcom but that doesn’t seem to be the case so I’ll probably give it to our hospital team next time we see them so that they can give it to someone else to use. I'd bring it to you and show you how to use it myself if that were possible!

Unfortunately diabetes and cancer doctors not communicating doesn’t surprise me much, but do they really think that being stuck in the middle as a go between and trying to work things out for yourself when you are so newly diagnosed is better than having a bit of extra technology to help you?! Oh I do feel for you, I’m so sorry that I can’t think of any more helpful suggestions, other than keep nagging them, which must be exhausting!

 

[martindt1606]

Tom its been a while since i used long acting insulin but i would have thought taking a fast acting bolus adjustment would be more appropriate. Could you ask them how many carbs are in the intravenous and apply your DAFNE ratio accordingly? First week keep the jelly babies handy, if you still see a high it may be worth considering taking slightly more fast acting the next time (almost like treating the day with sick day rules). I'm currently having an injection every 28 days to manage my cancer and I have a 4 day period where i need to be very reactive - although in the opposite direction to you as my treatment crashes my blood sugars.....

 

[Sally71]

I don’t know if I’m supposed to suggest this here but I’d have thought that if you adjust your glargine one unit at a time it won’t hurt. Glargine is Lantus isn’t it, it takes up to 3 days for the effects to be noticed so bear that in mind! Keep hypo treatments handy just in case.

We are pumping so a bit different, and have been doing so for 8 years, but one time we were having some difficulty with persistent highs for some reason, our nurse said “just keep gradually increasing the insulin until the numbers come down again!” Which is basically what we do, keeping a close eye on the numbers of course. Pumps only use short acting insulin though so the effects are a bit more instant.

 

[Robin]

May I ask, what's a DAFNE course?

It stands for 'Dose Adjustment for Normal Eating' and is a course that teaches you to carb count in detail. I was never offered one, and taught myself, with the guidelines given me by my Diabetes Nurse, and doing the BERTIE on line carb counting course as a refresher. (another acronym, It stands for Bournemouth Endocrine something or other, because that’s where it was developed). dtails here, anyway.

Bertie Diabetes

www.bertieonline.org.uk

. I think there may be a DAFNE online course now, but I don’t know how you access it. I certainly think it might be useful for you to have a look at one of them.

 

[Inka]

Hi @Tomd86 I really, really can’t understand why you can’t have a Libre. Surely you’re an ideal candidate? It could be such a help to you.

I understand what you’re saying about not wanting to “pester” the doctors, but sometimes you do need to push firmly but politely to concentrate their minds and to focus them on thinking about your individual needs.

I’ve never used Lantus but I’d be thinking about if the highs were short or long term and how predictable they are. If they’re short term and not so predictable - ie they can suddenly vanish - then I’d use my fast-acting insulin to correct as needed. If the highs were longer and predictable - eg high for one week or whatever - I’d temporarily adjust my basal/background insulin.

Sending best wishes to you. I wonder if the Diabetes U.K. helpline above could help in any way? You could give them a call tomorrow maybe.

 

[grovesy]

Hi @Tomd86 I really, really can’t understand why you can’t have a Libre. Surely you’re an ideal candidate? It could be such a help to you.

I understand what you’re saying about not wanting to “pester” the doctors, but sometimes you do need to push firmly but politely to concentrate their minds and to focus them on thinking about your individual needs.

I’ve never used Lantus but I’d be thinking about if the highs were short or long term and how predictable they are. If they’re short term and not so predictable - ie they can suddenly vanish - then I’d use my fast-acting insulin to correct as needed. If the highs were longer and predictable - eg high for one week or whatever - I’d temporarily adjust my basal/background insulin.

Sending best wishes to you. I wonder if the Diabetes U.K. helpline above could help in any way? You could give them a call tomorrow maybe.

My thoughts too re the Libre!

 

[rebrascora]

DAFNE is so much more than just "Dose adjustment for eating " though. It is an intensive 5 day course which teaches yo how to keep yourself safe in any number of scenarios with your insulin and how to spot when your basal needs adjusting and how to adjust it and also provides a networking framework for after support and can be a springboard to getting tech like Libre or even a pump.... at least that is how it works in my area. I appreciate that DAFNE courses are not currently running due to Covid and there is an online version but I think there will be aspects of the course like peer support and networking which will not translate online. There are reps who attend the course and explain their products and one of the senior consultants comes in and answers questions towards the end and the course tutors will flag up particular problems people are having to the consultants if they think changes in insulin or some new tech will help overcome it.....
....... Just so much more than a carb counting course and the educators are fantastic! Totally non judgmental and always on the side of the patients looking for ways to help and support them.

 

[trophywench]

Tom - I agree with other people. You know what I'd do were it me? I'd ring the diabetes consultant and TELL him I was going to increase the Lantus, unless he rings me back pdq to tell me what to do instead - even though OK we're not your doctor and have never met you and really are definitely NOT supposed to give anyone dosing advice.

At the end of the day - WE each treat our own diabetes - not the people with hats saying GP or Diabetes Consultant.

 

[nonethewiser]

However a month ago i restarted chemotherapy which requires me to have a good dose of Dexamethasone and a drip of glucose over 2.5hrs. As you can imagine my blood levels go through the roof and are hugely difficult to get back down, usually taking the next week to bring back down

Should treatment be ongoing then insulin pump would be best option, easier to increase decrease basal insulin in response to fluctuating bg levels.

Usually not given to newly diagnosed but yours is exceptional circumstances, worth having word with diabetes team to see if pump is possible, they take no getting use to, got use to mine after week or two.

 

[Tomd86]

Hi all,
I just wanted to say thank you for all the advise, I'm hoping I can find a way to speak to my consultant before I have my chemotherapy on Thursday. Not holding my breath though.

The DAFNE course sounds fantastic, I only wish there wasn't this poxy virus about to be able to do a course!

Thanks again!

 

[everydayupsanddowns]

The DAFNE course sounds fantastic, I only wish there wasn't this poxy virus about to be able to do a course!

Welcome to the forum Tom

Sorry to hear what a rough time you are having, especially the complexities of cancer treatment in your diabetes management. Steroids have a well earned reputation for causing BG chaos

DAFNE have set up an online version I think?

Home - DAFNE

DAFNE stands for Dose Adjustment For Normal Eating. It aims to help adults with type 1 diabetes lead as normal a life as possible.

dafne.nhs.uk

It may also be that Chemo is affecting you rather like illness and therefore ‘sick day rules’ might be helpful?

Sickday rules pdf

Sick day rules flowchart from Leicester diabetes centre. Particularly useful for people with Type 1 Diabetes during the Coronavirus outbreak.

www.t1resources.uk

I suspect they might be being being careful partly to keep you safe, but also because as someone newly diagnosed the ‘honeymoon phase’ might mean that your flagging pancreas intermittently ‘helps out’ with some home grown insulin!

 

[trophywench]

Whatever you decide to do Tom, wait for actual relevant medical advice or go with your own instincts (and have to say generally I've needed to trust mine a lot of times since 1972 and still here I am) - but always back up either what you do instinctively or what has actually been suggested by qualified medics - by making extra use of your meter, If you need to test shedloads of times, so what? Test strips are NOT on ration. If you need to use more than have been put on your repeat prescription by your GP - ask them to increase them. You absolutely have B good reason to test more if anyone ever did!

 

[Lizzzie]

Hello! You might be able to find online (or perhaps in the medical formulary?) how long Dex stays in the system / affects BG wrt changing background levels or introducing Novorapid corrections. I have always gone ahead and changed my background if I knew it was needed (down for long walks, hectic night shifts etc) but am blessed with a brilliant diabetes team who encouraged this. Thinking of you at this horrific time and hope you get it sorted