SCALOP

[Lallym]

I have a , currently, inoperable tumour on the head of my pancreas with proximity to two major blood vessels.

I had a partial whipples procedure a month ago ( during which the tumour was deemed inoperable) and now await regression treatment

I have been asked if I wolud consider participating in the " SCALOP" trial being run by the the Wales cancer trials unit by Dr XX at XX university.

I have no real basis on which to make this decision and would welcome any views from any one who has participated, had a relative who participated, or has knowledge of this trial and can offer any advice

Regards

Mike

[DRAD3]

Hi Mike

I read your post last week and have delayed my reply until today as yesterday my husband, Gary, had his CT scan results following 3 cycles of chemo as part of the SCALOP trial. I thought the results of that were important to know, along with our experience of this trial so far.

Firstly, excellent news yesterday, his tumour has shrunk and he has been given the go-ahead to proceed with radiotherapy. This will begin at the end of this month, after another cycle (an additional one, not strictly part of the trial but to keep the momentum up while radiotherapy is planned).

My husband is 46 years old and, like you, has a tumour at the head of the pancreas which was deemed inoperable because it has invaded blood vessels. This had caused a blockage in the bile duct and the resultant jaundice (first symptoms noticed over the Christmas holidays last year) were the reasons the cancer was eventually discovered in January. Chemotherapy was delayed until March as we had to wait until the jaundice had receded to acceptable levels.

You will no doubt have been told the regime for the chemotherapy part of the trial - Gary has infusions of Gem (sorry forgot spelling) once a week and daily tablets of Capecitabine (he normally takes his after his breakfast at around 9am and after his tea and around 6.30pm).

He has had minimal side effects we are glad to say. The main problem (for a previously very active person) has been the extreme fatigue. He has felt a little unwell after taking his tablets each day, more so in the morning (although he has never been a morning person) and has tended to go back to sleep and has found it very difficult to get up and going until mid-morning. He has been unable to pinpoint what "unwell" feels like but likens it to when you feel flu is brewing and you just feel the need to go a lie down. He has not had any sickness at all, a couple of occasions of very mild nausea but that may be a result of other things and he has not felt the need to take any medication for this. He plays a daily juggling game with trying to get his bowel movements OK. The morphine tends to constipate him, so he uses Laxido to help with that but the chemo, as the cycle proceeds, tends to loosen the stools so he has to be careful to try and get the balance right there but it has not caused any major problems. His stools last week were reminiscent of when he had jaundice but his jaundice levels were found to be up and they are keeping any eye on that and will take a closer look at the stent (which was fitted in January to allow the bile duct to work properly) if need be. The tablet chemo have caused his hands and feet to be sore, moreso his feets. They became quite red and very tender and there were a couple of occasions when he found it very difficult to walk. We had been given Pyridoxine at the beginning of the trial for this but had not realised that it was meant as a preventative measure, so did not starting taking that until the problem had presented itself - I suggest you take that religiously from the beginning as once Gary did this, he saw much improvement. The skin of his feet have been peeling quite a lot, coming off in sheets, in fact, but the skin underneath is not sore and it is not a problem as such, just a daily tidying task! He has had a few occasions where he has had quite severe headaches, migraine-like but these have been one offs, at the beginning of each cycle - pain killers have resolved these. He can feel quite short of breath at times and, along with the tiredness, this can restrict his activity quite a bit - this aspect of it has been the most difficult to come to terms with - a complete lifestyle change. He has had a few occasions when he has felt a tightening of the chest - it was scary the first time if happened, but like all of the side effects he has become accustomed to them as time has gone on. He said yesterday that the chemotherapy has never particularly bothered him, after being so ill with jaundice, it is that returning that he is most afraid of, which put it into perspective! The regime of tablet taking does take some forethought and we have to think about timing of meals etc. He does take a daily Lansoprazole tablet each morning (an hour before breakfast) which helps with the indigestion he experiences, this helps. The trips to the chemotherapy ward each week is something he has loathed - he has always hated hospitals and needles. Each time we have gone has been different in terms of waiting times but we have found the most successful way to minimise disruption to us, was to ask for an afternoon slot (rushing there in the morning was not good for him), to go and do blood samples the day before, and then ring on the morning of chemo to check the blood results were OK and to confirm we were coming - the ward ordered his chemo prescription at that point and (in theory) when we arrived a couple of hours later, it would be ready - it hasn't always worked out that way but it did seem the best way to do it.

I do wish you the very best of luck, Mike. I hope I haven't bombarded you with too much information - I always think you can never have too much, but that's just me! Gary (and I) were absolutely terrified yesterday morning- dreading that 3 months of chemo would have all been for nothing but the tumour has shrunk and we now begin to blast the sucker with radiotherapy - the battle continues and we hope to continue winning it. I wish the same for you. Let us know how you get on.

Good luck and best wishes.

Deb

[Hopefulwife]

Hi Deb,

My husband, Steve started the SCALOP trial today. He had his first Gem i/v this afternoon and we are waiting till after dinner for him to take the first Cap tablet. He usually has a doze on the sofa in the afternoon so don't know if he's any more tired today than normal. He has only been taking the Fentanyl patches for a week - starting on 12mg which was too weak, so yesterday upped to 25mg (on doctor's advice), but as this hasn't helped the pain he has been told today to up the oramorph to 30mls in the afternoon, then again at bed-time, and overnight if still not enough. So this will be wiping him out as well. I don't know how things are with you, but I wanted to thank you anyway for the reply on trials, because it was most informative for me too. If you want to read about us, I did a brief intro yesterday on the friends/carers' post.

Any hints and help from anyone will be gratefully received

Diane x

[PCUK Nurse Jeni]

Hi Diane,

Is Steve on regular paracetamol as well as the other meds?

If not, he can take it four times a day - 2 x 500mg tablets.

It is a good background painkiller, and not to be underestimated, and is quite effective combined with the stronger painkillers.

See how he goes on them, if he is not already on them.

Kind regards,

Jeni.

[laura]

hi, my hubby has been on a trial since june 2010! GEMCAP which is Gemcitabine infusion weekly 3 out of 4 and capecitabine tablets taken twice daily also for 3 weeks out 4, which seems to be the same chemo as used in the scallop trial, [ we are in cornwall and have to say receive brilliant care at Truro ]but i believe we are part of a larger trial from Liverpool.

we also had a good reduction in the tumour at first scan after 3 months, and 2nd smaller shrinkage at 6mths, scan taken every three months and whilst no further reductions , each scan shows no changes. which of course we are well pleased with, my husband also went to a different hospital for a WHIPPLE, he jokes that he went in for a whipple and came out with hemmoroids, which acually he did! whipples was not done tumour had invaded SMV.

we have a good life on the whole, we have just altered the things we do, to things that are easier, or more attainable, we decide daily what to do,, as each day can be different, energy levels etc, even moods and enthusiasm change daily, we plan to just keep on "takin the tablets" and planning our next break in wales.

as we have been doing this hosp thing for quite a while im happy to answer any more ? you may have, but obviously can only quote our experiences.

best wishes to you all, live for the day and each other. not sure what ages people are my hubby is 62 and im 71

love to all on here laurax

take care and be positive love to all laura

maller reduction

[laura]

hi again, i forgot to say that my hubby also has very red scaly dry feet, and ONE hand!. he didnt like the greasy feel on his feet, but we now use "UDDER" cream, yes its for cows udders!!, its lovely to use and does a brilliant job, not expensive either, re mikes query on trial or no trial you should have been given written info, your treatment should be no different on or of it, i guess as a trial it does save our individual hosp trusts the expense of our treatment, so i dont think you have anything to lose have yoy been allocated a specialist nurse? byee laura

[Hopefulwife]

Hi Jeni and Laura

Thank you both for your replies. We have survived the first night! Steve was sick at bed-time, just cleaning his teeth, but long enough after the cap tablets to keep them down. He then took 30 mls Oramorph and managed to sleep till 7 this morning! He has been taking 2x500mg paracetamol 4 times a day for months. They do seem to help, but we are trying to calculate the right dose of the Fentanyl as he feels spaced out on loads of Oramorph. He was on Tramado but it wasn't reaching the pain. Our trial is out of xx in xx and I thinks Steve sneaked in as one of the last in the trial. As he only has one kidney he needs to be even more closely monitored. Being on the trial, we have been allocated the Gem/Cap combo which we weren't sure he would get funding for, as his tumor is wrapped round the superior mesentary artery and declared inoperable. First they thought the cemo might shrink it enough for surgery, but it now looks like it's to "improve prognosis". Steve is 58 and I am 54 and our pre-health life was taken up with tennis and golf, holidays, seeing friends, all the things you look forward to doing in early retirement. Before January it was 4 years since his previous visit to the GP, so being ill and taking tablets is a real struggle for Steve. It's great to have found a forum for people in a similar position as ourselves. My usual dip into forums is on Tripadvisor or such like - so this is a far cry from all that. I shall keep a close eye on Steve's feet and hands and check out the udder cream - where do you get it if we need it too?

I'm sure I'll have endless questions over the coming (hopefully) months so it's really lovely to know there new friends out there. Maybe I can answer some for you too.

Keep well, we have to, so we can do the supporting.

Diane xx

[PCUK Nurse Jeni]

Hi Diane,

It is a good idea to start the cream right from the beginning, as this helps protect the skin. It is called Udderly Smooth, and you can get it at Boots, or order it on-line.

Hope this helps,

Jeni.

[Hopefulwife]

Hi Jeni

Thanks for that - I shall be off to Boots in the morning. Our MacMillan Nurse (or local equivalent) came over this morning. We asked about Steve's nausea - he was sick just half way through his lunch. She has had him prescribed some steroids to help with his appetite, so he's starting on them in the morning, called Dexamethasone, 2mg. Don't know if anyone else has been on them. Steve's sickness started about a week/ten days ago - before he started on the Gem/Cap, so not really related to the chemo. He's building up the strength of the Fentanyl patches - our nurse this morning suggested upping from 25mg to 37 so we've tried that this evening as it was replacement day. Hopefully he can reduce the amount of Oramorph he's taking as a top up. Just waiting for the new dose to kick in. It's all pretty grim isn't it - this cancer, people talk about having a good day, but can't remember when we had our last good one. I manage the odd time off when our 21 year old son looks after Steve, but Steve doesn't get one at all. It's a hard thing to get your head round isn't it. I'm still reading all your messages to find out each of your stories, so I apologise if I'm not up to speed on everyone.

It's comforting to know that there are others out there in a similar position to ours, but it's not a position I wish anyone else had to be in, so I send you all a big hug.

Diane x

[laura]

hi diane [ n steve ]

we got our cream at our local "Farmers" shop, where they sell cat/dog/ birdetc food, sure u must have one near you, u can then compare prices, every little helps,, my bri fortunately hasnt had problems with nausea, not always fancying and or enjoying food, but will take, and quite likes the Ensure plus drinks, in various fruit flavours,each bottle is a complete meal and are obtainable on prescription.

we use creon 25000, at least two at breakfast one after 2/3 mouthfuls the 2nd near the end, 1 at least with biscuits, cake etc

3 sometimes with main meal, again spaced out, he needs more with harder to digest foods like beef etc, not needed with fruit but with crisps and other snacks, apparently you cannot overdose on creon but can not take enough, pineapple juice i believe can help with nausea, it sometimes is trial and error cause we are all different.

re your "no good days" why not try keeping a little journal, i did when this all started, i wrote what we had done, how bri had been, like mood, awake, chatty etc whether we had gone out in garden/car seen anyone, just about our day, im sure you should see days where things are better but believe me it really is a rollercoaster, i think we have settled now into an acceptable gentle ride, had chemo yest, had real bad sweats about 1.00am bed pillows quilt really soakin wet, bed change at 2.00 he then slept, up at ten, bit sleepy but has been in conservatory doing a carving of a name place for us. all acheivements, just different goals, gosh i have rabbited on , sorry ! hope some of this may be helpful love laura xx