# Hello, new to site:



## Vivien (Jan 26, 2011)

Hello, I became type 1 in November last year after being diagnose with pancreatic cancer and having my pancrease removed. I started 6 months of chemo at the beginning of January and my blood sugar levels are no way near correct yet, the biggest problem I have is that they are too high. Does anyone know what to do if this is the problem? 

The other question I have is what to eat for snacks mid morning and afternoon that are not sweet, I am not used to eating so often or as much. I had an apple turnover (very nice!) yesterday morning but it sent my levels up to 23 and they did not come down for the rest of the day.

Any help or support would be appreciated


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## Fandange (Jan 26, 2011)

Hi Vivien,

wow, you have been through a lot! Welcome to the forum, there is always someone willing to share their experience and maybe something to make you smile.  

Take care, Angela


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## shiv (Jan 26, 2011)

Hi Vivien, what medication are you on to manage your diabetes? If you are using insulin and your levels are too high, it's a good idea to talk to your health care team to discuss how they can help you use the insulin to bring your levels down (they may suggest increasing background insulin, for example).


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## Andy HB (Jan 26, 2011)

Hello Vivian, welcome to the forum from me too.

I'll leave it to the type 1's to answer your question though, I just wanted to say hi.

Andy


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## chrismbee (Jan 26, 2011)

Hi Vivien and welcom to the forum.

It must be all very daunting for you, so soon after "diagnosis" but you will get to grips with it in time.  I suspect that you've still got other stuff to deal with, following your treatment.
Even after 28 years as T1 I still make silly errors and eat stuff that sends my BG into orbit, not to mention the sometimes inexplainable swings.  The thing is that high sugars are not an immediate danger (within reason) - you just need to get accustomed to what you can and can't eat and how different foods affect you.  This is obviously not going to happen straight away (I'm still learning!) but the secret weapon is testing, testing, testing; it's the only way to understand what's happening.  Never be tempted to avoid a test, purely because you think it won't be good - that just compounds things (deffo "do as I say ...." thing going on here).
There are loads of peeps on this site with quick access to a variety of sources of info, as well as it being a genuinely compassionate, caring community.
Good luck with your endeavours and look forward to seeing some of your input.
Best regards, Chris.


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## alisonz (Jan 26, 2011)

Hi Vivien and welcome to the forum xxx


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## shirl (Jan 26, 2011)

Good morning vivian, and welcome 

take care, Shirl


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## novorapidboi26 (Jan 26, 2011)

Welcome Vivien........

I couldnt comment on the effect of chemo on blood sugars and how long they would last, it might be good to see if anyone has any information on that.........

Dependant on what insulin regime you are on it is possible to only inject for the food you eat, so no need for mid morning/afternoon snacks if you dont want to.......your diabetic team can help you there......

Its good to have you here..........


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## martindt1606 (Jan 26, 2011)

Vivien,

I had my pancreas removed in May - neondocrine tumours.  I'm under review with the oncology team and so far they have not recommended chemo.

More than happy to exchange experiences - on here or through the private message function.

You're probably the closest person I've met on the forum - both health and location as I'm only 3 or 4 junctions away on the M40.

Regards

Martin

PS currently at work so cannot comment further at the moment


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## macast (Jan 26, 2011)

hi Vivien.... welcome to the forum


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## AlisonM (Jan 26, 2011)

A friend's father has had chemo for prostate cancer and they noted a signifcant increase in his blood sugar levels while he was undergoing treatment. He's done with that now and his BGs are back to normal. Based on that I'd say the chemo could certainly have an effect.


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## Vivien (Jan 26, 2011)

*Thank you*



martindt1606 said:


> Vivien,
> 
> I had my pancreas removed in May - neondocrine tumours.  I'm under review with the oncology team and so far they have not recommended chemo.
> 
> ...



Thank you for your reply it is really good to hear from someone who has gone through the same experience not that I would wish this on anyone. I expect you are taking Creon as well? Would love to hear more from you. Vivien


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## Steff (Jan 26, 2011)

Hi and welcome to the forum


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## eggyg (Jan 26, 2011)

Vivien said:


> Hello, I became type 1 in November last year after being diagnose with pancreatic cancer and having my pancrease removed. I started 6 months of chemo at the beginning of January and my blood sugar levels are no way near correct yet, the biggest problem I have is that they are too high. Does anyone know what to do if this is the problem?
> 
> The other question I have is what to eat for snacks mid morning and afternoon that are not sweet, I am not used to eating so often or as much. I had an apple turnover (very nice!) yesterday morning but it sent my levels up to 23 and they did not come down for the rest of the day.
> 
> Any help or support would be appreciated



Hi Vivian, I  had most of my pancreas removed 3 years ago because of a pre cancerous tumour. I was only diagonosed as diabetic 3 months ago, I am classed as type 2 but it's not really as simple as that, the usual advice of losing weight and exercising more doesn't apply to me as I have very little pancreatic function left, I am on metformin at the moment and had a HBa1C test yesterday to check my long term BG if it's too high they will put me on insulin, not looking forward to it, but it's better than the alternative! I am also on Creon 40,000 with meals, which I am sure you will be aswell. Did they remove your spleen? they removed mine "just in case". being diabetic is scary enough as it is without the added complications of recovering from major surgery. All I can say is, you will get through it, you probably have a fab scar but you're alive. There isn't alot of us on here I don't think, I have been in contact with a couple of people, I think martin will have more in commom with you as he is type 1 too. But everyone will be really helpful, I don't post much but I log on most days for a nosey. PM me if you need a chat. Hope every thing goes well with the chemo. Elaine x


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## Pigeon (Jan 26, 2011)

Did you know that Chris Rea is diabetic as a result of pancreatic cancer? Don't think that he's a member on here though


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## Pigeon (Jan 26, 2011)

Forgot to say hope you get to grips with things soon, and welcome to the site.


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## martindt1606 (Jan 26, 2011)

Vivien said:


> Thank you for your reply it is really good to hear from someone who has gone through the same experience not that I would wish this on anyone. I expect you are taking Creon as well? Would love to hear more from you. Vivien



Hi Vivien - I've just realised I've become a Senior Member - I must have spent too much time on here recently.  

I'll be interested to keep in touch as you go through chemo as my oncologist told me in November that it was too soon to consider chemo (this was 4 months after the pancreas operation).  Basically he wanted my body to recover further and also he wanted me to stabilise the diabetes and gain control of the blood sugar.  We will review the requirement in May and hope Chemo isn't necessary as all the post op tests suggest that all the neoendocrine tumors were removed and there was no further activity.

Have you recovered from the operation?  One side of my scar took around 6 weeks longer to heal than the rest and I've now got a big lump on the side of my stomach - I'll never swim again.... But seriously it sounds like you started Chemo before my scar had even healed.  Not sure I could have considered that... 

As well as the insulin (lantus and NovoRapid) I take omaprazole once a day and Creon.  I take 35000 Creon with meals and 25000 with snacks or with a carb booster after a hypo.  I'm used to the Creon as I took it for 4 years before the operation.  

You mentioned what to have for a snack - I've started eating Riveta Thins 5 carbs each and the seeded variety are not too bad.  They don't seem to have a big impact on the blood sugar which is good as my BS is certainly not under control.  I have periods where I think it is sorted - perhaps 3 days between 5 and 7 and then it will all go wrong for no reason and I'll have 2 - 3 days with a hypo a day or as now a period where I cannot get the BS into single figures (but not extreme highs perhaps 13-14).

What I have found since my operation is that most days (perhaps 4 days a week) I feel sick and "spaced out" which is a nightmare at work.  I keep mentioning this to the diabetic team and GP but no one seems to think I should take anything else.  I'm sure it would help to do so as this feeling is hiding the hypos.......Are you on any other drugs?


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## Vivien (Jan 27, 2011)

martindt1606 said:


> Hi Vivien - I've just realised I've become a Senior Member - I must have spent too much time on here recently.
> 
> I'll be interested to keep in touch as you go through chemo as my oncologist told me in November that it was too soon to consider chemo (this was 4 months after the pancreas operation).  Basically he wanted my body to recover further and also he wanted me to stabilise the diabetes and gain control of the blood sugar.  We will review the requirement in May and hope Chemo isn't necessary as all the post op tests suggest that all the neoendocrine tumors were removed and there was no further activity.
> 
> ...



Hi Martin, I hope I am doing this correctly, I am not the best on computers!
Did you have your operation at the Churchill in Oxford? I am having my chemo at High Wycombe but it is under the Oxford team. 

The operation was on 4th Nov and I had a really bad time once I left hospital with pains when eating so after 2 weeks they have given me Domperidone to take before I eat as well as the creon, which is helping, I am also taking Omaprazole. Creon I am still finding a bit of a nightmare and quite often forget to take it which is not good. I also take 1 antibiotic a day as I had my spleen removed quite a few years ago due to hodgkins disease, yes I have been unlucky!! So coping with insulin as well I feel my time just revolves around thinking about eating, pills and insulin.

The operation went well but the oncologist said there were some loose cells that they had to get rid of hense the chemo. I am more then happy to talk to you about it, so far it has not been bad at all. I have 1 hour of chemo a week for 3 weeks, then a week off, which I am currently on I call it my holiday, then the cycle starts again for 6 months. So far it has been fine I have only felt a little tired and maybe a bit sick but nothing significant. It might get worse as the toxins build up but so far so good.

The post operation has been pretty awful, my bikini days are over. Don't not go swimming because of your scar you have been through so much and it is only your body. I know we are one of the very few 'lucky' ones with this cancer but sometimes I wish I had not gone ahead with the op. I am not back at work yet but am hoping to start back at least for a few hours during Feb.

Thank you for the info on the rivita slims


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## Vivien (Jan 27, 2011)

eggyg said:


> Hi Vivian, I  had most of my pancreas removed 3 years ago because of a pre cancerous tumour. I was only diagonosed as diabetic 3 months ago, I am classed as type 2 but it's not really as simple as that, the usual advice of losing weight and exercising more doesn't apply to me as I have very little pancreatic function left, I am on metformin at the moment and had a HBa1C test yesterday to check my long term BG if it's too high they will put me on insulin, not looking forward to it, but it's better than the alternative! I am also on Creon 40,000 with meals, which I am sure you will be aswell. Did they remove your spleen? they removed mine "just in case". being diabetic is scary enough as it is without the added complications of recovering from major surgery. All I can say is, you will get through it, you probably have a fab scar but you're alive. There isn't alot of us on here I don't think, I have been in contact with a couple of people, I think martin will have more in commom with you as he is type 1 too. But everyone will be really helpful, I don't post much but I log on most days for a nosey. PM me if you need a chat. Hope every thing goes well with the chemo. Elaine x



Hi Elaine, thank you very much for your reply. I had my spleen removed a number of years ago due to hodgkins disease, so yes you can have cancer twice, the consultant said I was just un lucky! I take a mixture of creon, mainly either 25,000 or 40,000 I do not have it right yet and sometimes I forget which is not good and with the insulin as well it is all a bit of a nightmare. Yes I have a lovely scar, it is all still quite uncomfortable, mainly internal and mostly in the evenings. I can not walk to far yet but everything is getting better slowly. I know we are one of the very few who get over this cancer and we are alive but there are times when I wish I had never gone ahead with it all, that is happening less as time goes by and I am getting more used to it. Chemo is not too bad at the moment, I have just finished my first batch, 5 more to go!
Thank you again, I do not normally post either but it has been great hearing from people like you and Martin. Thank you for your support


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## Vivien (Jan 27, 2011)

*Thank you everyone*

I just wanted to do a general thank you to everyone for your replies. This is all very new to me and quite hard so it is great to have such positive feedback form everyone. Thank you


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## Vivien (Jan 27, 2011)

chrismbee said:


> Hi Vivien and welcom to the forum.
> 
> It must be all very daunting for you, so soon after "diagnosis" but you will get to grips with it in time.  I suspect that you've still got other stuff to deal with, following your treatment.
> Even after 28 years as T1 I still make silly errors and eat stuff that sends my BG into orbit, not to mention the sometimes inexplainable swings.  The thing is that high sugars are not an immediate danger (within reason) - you just need to get accustomed to what you can and can't eat and how different foods affect you.  This is obviously not going to happen straight away (I'm still learning!) but the secret weapon is testing, testing, testing; it's the only way to understand what's happening.  Never be tempted to avoid a test, purely because you think it won't be good - that just compounds things (deffo "do as I say ...." thing going on here).
> ...



Hi Chris, thank you for this, it is encouraging that you are still 'experimenting'. I still don't really understand what I can and can not eat, or at least eat less of and I think that you are right regarding try and see. Apart from apple turnovers I think cheese can send my bs high. I have been amazed at the replies that I have had which is lovely. Thank you


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## eggyg (Jan 27, 2011)

As I mentioned in my previous post I am 3 years post op. I went back to work part part time after 4 months. I was still pretty exhausted. I remember quite clearly the first day I ventured out for a walk, I had my op on 18 December and went out on 1 Feb. my 15 year old daughter came with me I just did 20 mins but by God I was kn*****ed! But everyday I tried a bit more, I drove for the first time in the March that was scary, I was in a bit of pain at first when I changed gear and put on the hand brake, obs was all the internal scarring. I know what you mean about wishing you hadn't had the op. I felt exactly the same, you feel that you will never be better. I won't lie, there's no great epithany, you just feel gradually better. It takes time, but I try and live each day as if it's my last, I feel I've been given a second chance, I have to be careful what I eat and drink, not just because of the diabetes but because I get pancreatitis, sometimes I wish they had taken it all away, because each time I have a pain I think the tumour is back. because mine was pre cancerous, I don't have any ongology support and neither my GP or local hospital( I had my op in another trust in a specialist unit) can deal with me, I find that frustrating and upsetting sometimes. I have great support from my family, my husband worries about me constantly, if I am going out for a meal etc without him I get given precise instructions. I don't take any notice mind! I work 4 days a week and look after our 2 4 yr old grandchildren on a weekend and am usually permenently exhausted, but that could be my age. 50! People always say I look really well considering what I've been through, I just feel normal apart from having most of my insides removed (I had my gall bladder removed 10 years ago because of gall stones which in turn resulted in pancreatitis which led to the whole sorry mess) and being diabetic. I am still here to tell the tale though! Elaine x


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## martindt1606 (Jan 27, 2011)

Vivien said:


> Hi Martin, I hope I am doing this correctly, I am not the best on computers!
> Did you have your operation at the Churchill in Oxford? I am having my chemo at High Wycombe but it is under the Oxford team.
> 
> The operation was on 4th Nov and I had a really bad time once I left hospital with pains when eating so after 2 weeks they have given me Domperidone to take before I eat as well as the creon, which is helping, I am also taking Omaprazole. Creon I am still finding a bit of a nightmare and quite often forget to take it which is not good. I also take 1 antibiotic a day as I had my spleen removed quite a few years ago due to hodgkins disease, yes I have been unlucky!! So coping with insulin as well I feel my time just revolves around thinking about eating, pills and insulin.
> ...



Vivien hopefully you may have identified why I feel spaced out and sick.  Before I went in for the Op I was taking Domperidome but these were dropped by the hospital doctor and I never had then reinstated by the GP.  I guess its time to ask for them to be added back to the prescription. 

Its amazing how we are all different and yet similar.  For example eggyg started out with Gall Stones as I did and it was whilst investigating these that they identified a scarred pancreas (but no tumour).  6 years later they identified the tumour so out came the pancreas - but not the splein.  

Like you I am also benefitting (?) from the joys of multiple health authorities.  I am now with Hillingdon for diabetes but with Hammersmith for Oncology (they also did the gall bladder and pancreas follow up).

I've been back at work since September its been slow and this week (hopefully) will be the second consecutive week where I've worked all week for the first time.


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