Tumour in duodenum

Hi Mai Tai,  hope you are through the last cycle by now.  I haven't been on the forum for ages and as I'm sure you've seen this particular area is very quiet.  The side effects are not very pleasant but do clear up pretty quickly.

I just wanted to say I am two years further down the road than you - diagnosed in April 2016, Whipples (very similar to yours by the sound of things) in May 2016 then chemo from July to just before Christmas 2016.

Everyone is different and starts from a different place, but just to let you know it probably took 3-6 months to get the last of the chemo side effects out of the system, though I still plead chemo brain on occasion ;-)

I felt much better as soon as I'd taken the last Cape tablet, partly psychological I guess as I really detested them. 

I will be counting myself as 3 years clear in early May, on the anniversary of the Whipples procedure.  I only see my oncologist and surgeon once a year and barely think about it.  I'm still taking a small dosage of Creon due to the partial removal of the pancreas, but otherwise I'm back to how I was pre-cancer.

Hope you recover well from the chemo side effects.  I found the diarrhoea stopped when I stopped the Oxy/Cape treatment, and in fact after being very bad at one point (during the Rio Olympics I think!) the oncology team adjusted my dosage to mitigate it.  The Creon does take a bit of getting used to - do you keep it temperature regulated?  Its effectiveness is neutralised if it gets too warm (I'm sure you know all this).  I only take a few tablets daily and sometimes forget with minimal side effects, so I hope your new digestive system adapts.

Anyway, thinking of you and hoping you are making progress

Hi

Thank you for the response! 

Yes, it is rather quiet compared with other groups!  I'm thinking of starting some long running "fun" discussions like they have in other groups e.g. a similar one to "Walking back to happiness" in the Breast Cancer group - maybe calling it "Are you ready boots" ??

Congratulations on your 3 years clear! 

Do you take your creon with meals? 
I started with 1 creon with a snack and 2 with a meal, but because of loose, pale stools the dietitian advised to take more.  And she just kept increasing the amount she thought I should take.  In the end I was upto 8 with a meal, which was just ridiculous!! Especiallly, when once out for the day and I forgot to take any creon with me - I noticed that there was no difference in my symptoms between taking none and taking 8!  So now I'm pretty sure my symptoms are chemo related rather than creon, as there was a short time between surgery and chemo start when my stools were normalish!  So I've  lowered the dose back to 4 with a meal.  I'll give it a few months post-chemo and see if things return to normal.

I'm taking creon with cold drinks, but I don't keep it in the fridge - it's just out at room temp.  Is yours in the fridge?

I did struggle with side effects really badly and lost a lot of weight until cycle 3 when I was helped with a course of antibiotics and steroids, and have been reasonably well since then.  The last (planned) cycle should start this week.  This will be 8 cycles of Capecitabine and 7 of Oxaloplatin.  I'm almost there! 

Did you lose your hair?  Mine has started to thin quite a bit, and I have big bare patches.  What's left feels fluffy and soft like baby hair.

Hi - in answer to your questions:

Creon - I do keep it at room temperature, but try to keep it out of direct sunlight.  I've noticed there is a pronounced 'chemical' smell after a few weeks at room temperature.  When I have just collected a prescription but not yet finished the current one I keep the 'spare' pack in a cold dark room (but I'm not sure if it makes any difference).  I have done a bit of travel since finishing chemo and I try to keep the Creon in an inner part of my rucksack or handbag as I'm concerned too much ambient heat could affect it.

I'm on Creon 25000 (300 mg).  I started off taking two with any lighter meal eg lunch and three with my main meal / dinner but after a short while I reduced that to three with my main meal (usually dinner) as the previous dosage was having the opposite effect and making me constipated.  I've been taking just two with my main meal for a long time now.  I do occasionally forget if I'm out (even though I always have a small supply with me) and there never seems to be too much difference.  I have asked my surgeon at my annual catch up whether I need them and been told I could try a week without them as a controlled experiment,  but I haven't got round to trying that yet.  I have noticed a few changes but I think it's mostly down to what and when I eat.  I was advised 'little and often' but don't really follow that.  The main change I have made is that before I was sick I never had breakfast, so now I always have a healthy breakfast, usually cereal and fruit.  Although I rarely eat a very fatty meal I don't rule out things like occasional fish and chips and Indian food and very occasionally, pizza.  I have had no issues with them.

It did take about six months to regain the weight I'd lost between being very sick and essentially not eating anything at all since early March to end May, then chemo July to November/December. Like you I had a lot of weight loss in the middle of chemo - cycles two and three were bad for me.  My Cape dosage was changed and the infusion amount reduced and I had a rest period off the medication between cycles 3 and 4, and also between 4 and 5 I think, and my weight recovered somewhat after that, though still down by at least 5 kg compared to before getting sick. 

Great news you are on your last cycle!  I had six three-week cycles in total, though of course the gaps without medication strung it out a bit longer.  I found my appetite improved over the weeks after chemo finished.  The good news is that we are coming into spring so I'd really encourage you to get out and about though it sounds like you've kept active anyway.  There will be chemo drugs in your system for a while so being active helps circulate them so they get removed naturally.  Of course you need to listen to your body and be kind to yourself as it's easy to overestimate what you'll feel like doing, and there's no shame in having a rest as you build up back to 'normality.'  I did get tired easily initially but before you know it you'll be doing things that seemed out of reach at the worst points.

On the hair loss side, I was told to expect thinning rather than full loss.  It got quite noticeable around the time of the worst weight loss, mainly on the hairbrush with distressing clumps on it.  It did grow back quite quickly after chemo ended, and sort of grew through the exisiting hair, so for a while I had a short layer growing through the longer hair, which was a bit strange, but not too odd looking.  It's also the same colour as before - I've known people say theirs came back grey or a different colour / texture to before, but that's not been my experience.

Hope that's been some help.  All I can say is both my surgeon and oncologist told me that after the operation and treatment I should expect to go back to a 'normal' lifestyle and that has been exactly right.  I do feel very lucky in that respect but I did want to share it as it can feel a bit daunting to know what next after the chemo finishes.

Hadnt realised how rare duodenal can cer is as not much conversation on here about it. Was interesting reading about your experience.Am on my 8th and final cycle from today.My treatment has taken longer than expected as when next cycle was due my bloods were often too low.So had to take few days to try get count up.Nothing I could do to improve it,as I was told each time. I have been very lucky to have had very few side effects. Get very tired when taking the capecitabine but other than that just had my hair thinning,but no noticable hair coming out in clumps etc.

Am looking forward to finishing the treatment.Told that they cant do scans to tell if cancer fully gone.I guess its just blood tests that will tell if cancer is still in body.I found I was allergic to a number of medications ,one being the dye used in scan,so guess I cant get too many more scans.

Am hoping to go to Canada for a few months over Christmas but have found getting travel insurance is really expensive.Am hoping it will be a bit easier and cheaper once chemo is finished.If you or anyone has any experience in getting travel insurance after cancer treatment I would very much appreciate hearing from you.

Hi - I went to USA two months after finishing chemo for a duodenal cancer.  I didn't phone up while on chemo so all the following was when I could say my regular hospital visits had stopped.  The main problem was the insurers didn't go to the level of detail of duodenal cancer so tend to lump you into whatever the agent thinks is closest.  If this happens to you make sure they pick bowel cancer and not pancreatic cancer!!!!

I had some ridiculous quotes (thousands of pounds) but ended up only paying twice what I usually paid for an annual policy before cancer.  I used World First and the conversation on the phone took about an hour because they are very thorough.  I have used them ever since.  The current premium for annual worldwide cover is only a few pounds above what I used to pay without cancer and covers me for any medical costs including anything cancer related.  The last renewal conversation I had with World First they had improved their cancer categories and did have duodenal as an option, which is probably why the premium is reasonable.

I travelled a lot both with work and leisure before cancer so it was a big thing I was looking forward to starting again.  I don't travel as much now as I did (through my own choice not because of wellness) but since chemo finished I have been to USA several times, Canada and Europe several times too.

I've not had any scans since chemo finished, as neither my surgeon nor my oncologist thought they were necessary.

Good luck wiith the last few cycles!

Thank you so much for your quick reply to my request.Are you part of the Macmillan team or just a member on here?

The company you use sounds good compared to some weve looked at. Will be looking at their site today.Are their questions very personal or just generic?Do they need ALL ones medical details? I have had high BP for many years and the insurance we have thro bank account wont even cover me for that now.

Thanks again for your help.Will let you know how we get on!

Hi - I'm just a member so any opinions are just my own.  I'm not often on here but I do try to reply on duodenal cancer because there's not much discussion here.  Also I want people to know you can get through it and life can be pretty normal afterwards.

I found the websites were not that helpful as they are quite general and default to quite high premiums  It is much better to speak to an actual agent on the phone but it is time-consuming.

Any insurance company will want to know about all conditions.  I recommended World First to a friend with thyroid cancer and he had some other pre-existing conditions and didn't find them so good.  He went with Post Office I think and he travels a lot all over the world.

I have 'free' insurance through my building society but I don't think I could claim on it due to having had cancer.  That said, I think 5 years is a cut off for a lot of insurers for cancer, so if/when you get to that point ...

Hi, Have just come across these old correspondents while scrolling thro old emails.

How are you Linds?Still keeping well I hope.

My treatment finished last October and this week spoke to consultant .He told me the hospital don't need to see me again,just to go see my own Dr. if feeling unwell.Was surprised they don't need to see me again at all,as most cases I hear about have annual check ups at least,but I guess they think Ive recovered well enough to just get on with life as normal now.Would just be interested to know if anyone else has been completely discharged after just 18 months from operation(Whipple)

Also interested if anyone else experiencing difficulty in obtaining Creon tablets?Started off on 4000 capsules but was told they stopped making them.Was then given 25000 but the chemist finds it very difficult to get hold of this size.Dont know if its only here in Wales or a worldwide shortage? Seems easier to get 10000 but taking so many of this size each meal is such hard work.

Managed to get travel insurance thro a company you recommended,so spent over 2 months in Canada,returning just prior to Covid lockdown. 

Hi Spamy

I am caring for my husband [65] who has duodenal cancer. He had a Whipple in February 2018 and after a tough 4 month recovery - [you read my profile I have set out all his diagnosis/progress/symptoms since] He was due a scan in May but due to Covid 19 that was not possible but he might be having one in late July. He has had two telephone conversations with his oncologist since lockdown but no actual appointments have been scheduled. However they think he's doing OK too, which surprised everyone - as he is asymptomatic of cancer so far. They don't seem anxious for him to see anyone and like you, told him to call if he begins to feel unwell.

He's no different now than he was before the Whipple, other than he gets tired in the afternoons and has had to give up mountain climbing! The 'Whipple attacks' and 'dumping syndrome' faded after a few months [both very unpleasant]

The Creon situation is annoying having to change from 40k's to 25k's but we have a great pharmacist who orders extra whenever he can to keep him in stock.  He takes a lot of capsules with each meal [8 on average] and although tedious, it's better than the alternative.  He says the formula is slightly different too as he had some problems at first but he is settling down now.

Eighteen months ago we were dealing with a depressing prognosis which hasn't happened - yet. 

Glad to know you are doing well - hope it continues.

Hi Spamy, hope you are doing okay - your trip sounds great.  I also hop you had some luck getting hold of meds.

I've not had any problems with Creon availability, but I take so few (and sometimes I forget) a bottle of 100 lasts me about 6 to 7 weeks.  I take Creon 25000, always have done.  I'm in the West Midlands and the chemist has never had any supply issues.

I am supposedly still on annual catch ups, but I have yet to have a review that is more than 5 minutes of chit-chat (normally after an hour to an hour and a half's drive).  I am now more than 4 years on from my Whipple and I'm glad to say they were right that things would be as they were before cancer.

I have annual mid-summer appointments with my surgical team - except I couldn't go to last year's and had a 5 minute phone call with a nurse a few months later.  I have annual mid-winter appoints with the oncology team in a different hospital.  This year's was in early Feb otherwise I suspect it would have been cancelled due to Covid.

Basically the conversation is that I look fine (no tests are done), and if I don't feel well I should let them know.

If you are a duodenal cancer patient and the prognosis after Whipple and chemo was that you should get back to 'normal' health then I'm not sure there is any advantage in these meetings if that is any comfort.  I do like the reassurance of having a contact in the oncology team rather than going through my GP, but I also wouldn't be surprised if I get a letter saying they won't see me this year in mid-summer or mid-winter.

I am surprised they didn't say contact your key worker rather than GP, as I still have (and carry) the business card of my specialist nurses, not that I've ever needed it.