New to Board

[lts]

I have been a lurker on this board since the beginning of September, when our world came crashing down when my dad was diagnosed with pancreatic cancer that had spread to his liver. Cancer is a scary word and you never think it would happen to your family. My Dad had been ill for a few weeks and was visiting his gp. He was losing weight, didnt have an appetite but when he did eat something he felt full very quickly. He was also experiencing some pain which he put down to a minor accident at work. He was initially diagnosed as having ulcers, then helicobacteria (sorry not sure if that correct spelling). He was then sent for a CT scan which confirmed it was pancreatic cancer. He is currently being treated with gemcitibane and is half way through his treatment. Initially he tolerated this well but not so much now. He gets very tired and for 3-4 days after treatment he cant eat as he complains about a bad taste and also has no appetite. Just when his appetite comes back, he is back on his treatment again. He has had another scan which showed the chemo has kept it at bay and the cancer has not spread any further, which was some good news.

My dad has lost almost 4 stone and is now down to 8.5 stone. It is awful seeing him this way. Does anyone know what causes the bad taste and is there anything that we can do about it?

I have a son who is now 6 months old but he was only 8 weeks when he was diagnosed. My son is keeping everyone going at the moment and my dad focuses on him alot, however it also makes me very sad as my dad is an excellent grandad and my son will miss that as he grows up.

In America they use a GTX protocol which is a combination of Gemcitibane, Taxotere and Xeloda. It looks like this gets good results, however when I spoke to his consultants they dont do combination therapy as its not clinically proven to work better than using these drugs on their own. What treatments is everyone else receiving?

Edited January 20, 2011 by lts

[PCUK Nurse Jeni]

Hello Its,

Sorry to hear that your dad is not having a great time with his Gemcitabine. Though, it is, as you said, good news that the chemo is keeping the disease stable. Many chemotherapy agents cause taste changes and a metallic taste in the mouth. This will lead to, as in your dad's case, a lack of appetite. A common thing to hear is that "everything tastes like cardboard", and very often, people go off things which they really liked, and can not face them any more. The nature of the cycles of chemo also mean, as you said, people are just recovering and able to feel better, when it starts all over again. This can be distressing for patients.

One small but valuable thing you could do, is to check on your dad's oral hygiene -ie: brushing of the teeth or dentures regularly, to keep the mouth clean. It is good to use a soft toothbrush, as chemo can make the gums and mouth sensitive, and prone to damage from hard toothbrushes. It is also good to use a mouthwash in-between times, to prevent any soreness of the mouth. I am not sure if your dad has a sore mouth, but this can be a big factor in eating . Good to check the tongue as well. Often, the tongue can get a white coating on it, and this can also cause a bad taste. Occasionally, there may be a case of thrush, which you can see as white coating with spots on the tongue. There are treatments for this, available on prescription, so if you think it may be this, get the GP or hospital consultant to have a look into his mouth at the earliest opportunity. He may also be prescribed a medicated mouthwash (ie: Difflam), if necessary. If the tongue is coated, it can be gently cleaned off with the soft toothbrush. Trying these methods may help.

A short course of steroids can increase the appetite, and help your dad feel a bit better also. He should try and eat little and often, with high calorie drinks in-between to keep calorie intake up. You may ask for the dietician to see your dad also -they will be able to give you information on fortifying foods as well as providing him with an initial supply of high calorie drinks. You should also mention enzyme replacement, as in cases of pancreatic cancer, the instance of enzyme dysfunction and malabsorption is high. This will affect your dad's ability to absorb the nutrition from his food, thus leading to further weight loss. Your dad should be weighed prior to each chemo cycle, so it might be worth drawing the 4 stone weight loss to his consultant's attention.

As for the combination chemotherapies, yes in the States they do use different combinations to the UK. There are some combinations available here privately. In the distant past, pre-gemcitabine days, combinations such as Epirubicin, Cisplatin and 5fu drugs were used.

The GEMCAP study looked at gemcitabine based combination therapy and concluded that adding capecitabine (xeloda) to Gemcitabine improved survival of the disease by about 3 months approx. see http://171.66.121.246/content/25/16/2212.ful for the full result. But the standard treatment in the UK is Gemcitabine, unless you go onto a clinical trial and receive other drugs.

Hope this helps,

Jeni.

Please email support@pancreaticcancer.org.uk if you require any further input.

[Nardobd]

Hi lts and welcome

Jeni has given you all the necessary info, I know, but just to add personal experience, my husband, Ted, has been on Gemcitabine (in fact he's had one and a half six-month courses now). The side effects do build up with time and his second set had to be stopped because he kept getting infections. However, the Gemcitabine has precipitated a small reduction in the size of the tumour and kept him stable for almost two years in total. I know that we're very lucky compared to most, because Ted reacts very well to this chemo.

When I was investigating combination chemos his consultant (who is the Head of Clinical Oncology at our local Specalist Centre) said that the combo therapies tend to have far more side effects and be more toxic than Gemcitabine alone, so that could be a good reason not to add other drugs. It's all about balancing the pros and cons which, in part, depend on your Dad (and the family's) priorities. Please excuse my bluntness but some people want to survive at any cost and others want a better quality of life even if it means shorter survival time. That's a very personal decision.

Can I just take the opportunity to thank you for "de-lurking" and encourage others who read the boards to register and post - we don't bite (honest!).

Do keep us up to date with how your Dad, you and the rest of the family are doing.

Kind regards

Nicki

[Stravvie]

Hello everyone,

I, also, am a newcomer to this discussion board. My Husband, Edmund, was diagnosed, quite brutally by a French Doctor at our local hospital, on 10 December 2010 that he had a mass on his pancreas. That was it. We were kept waiting for 5 hours before we were given the prognosis. We were not given any further information by this man at all.

We were kept at that hospital for two weeks before being transferred to the City Infirmary (my Husband has von Willebrands Disease which is a form of Haemophelia). Because of that condition he had to have a drip Transaemic Acid (spelling?). Eventually on the 20 December after meetings of various Doctors, Surgeons etc from three hospitals, we were told that the cancer was on the head of the Pancreas, near to the bile duct, causing his Jaundice. It was far too close to the Portal Vessel, largest blood vessel in the body and the operation to remove it was too dangerous. We asked about Chemotherapy and were told that a Doctor at the Cancer hospital would be in touch.

We had an appointment for 6th January and advised about the chemo Gemcitabine which would be carried out in just over a week. I telephoned last Friday and asked when my Husband could be expected to attend for treatment and was given the 20th January 2011 at 2.30 and 5 pm. Why did we have to wait all this time when my Husband is worrying himself and saying no one is interested at his age. I am beginning to think he is right.

Thanks for your postings it has given me some hope knowing there are other people out there who are in the same position as Eddie and I. Any help would be very much appreciated. Thanks everyone. Nice to know I can talk to someone who understands.

Regards

Stravvie

[Nardobd]

Hi Stravvie

As well as having the same disease, our husbands have similar names - mine is Edward (normally shortened to "Ted"). Like Edmund, his tumour is too close to the Portal Vein to have an operation to remove the cancer.

I don't know whereabouts you are but I suspect your local hospital is not a "specialist centre of excellence" (there's a list at www.pancreaticcancer.org.uk/regional_centres.htm) and that was why the transfer to the City Infirmary was necessary. It is quite normal for anyone diagnosed with pancreatic cancer to have their case discussed at a "multi-disciplinary" meeting where the oncologists, surgeons and radiologists all look at scans etc and decide the best course of treatment.

I trust that the jaundice has been sorted - if not then you need to start throwing tantrums! The doctors can insert a stent to protect the bile duct and stop jaundice.

Unfortunately the beaurocracy within the NHS can mean that it's difficult to get quick action. My experience is that if you shout loud enough, long enough and often enough this can often be overcome. If you're not happy...let them know in no uncertain terms (but without being abusive). If you hit a brick wall then ask for details of your local Patient Liaison Support and Advice office (known as PALS, this organisation is designed to help patients and their families when dealing with the NHS, including overcoming obstacles and difficulties). Eddie should also be allocated a clinical nurse specialist dedicated to helping people with pancreatic problems. If not, then ask for one. These nurses often know the best way to work through the system and can often be the route to a short-cut!

I don't know how old Eddie is, Ted's 62 and, thanks to my ability to "throw my toys out of the pram" often and loudly, he seems to get reasonable treatment at our hospital. Hospitals should not discriminate on the grounds of age.

Just to give you a little hope, Ted was diagnosed in February 2009 and told "probably six to nine months". He's had two courses of Gemcitabine (one of which was cut short because of infections) and still has a reasonable quality of life. Of course, everyone is different and reacts differently to the chemo etc but it's not all doom and gloom!

Keep in touch

Regards

Nicki x

[lynbo]

Nikki

Teds story is very interesting to me, i follow all your posts, and think its fantastic how he has kept plodding on despite infection etc and your posts certainly do give hope.

Its frustrating though how treatment, or quickness of treatment, care, and aftercare, differs dramatically depending on where you live and the hospital you are treated at.

Myself and my niece have become PC nerds, following every story in the press, and reading up on as many cases as poss, its helped us understand this disease, and made us determined to raise awareness however possible.

So,

Thanks, chin up, and you and Ted keep fighting

Xxxxx

[Nardobd]

Thanks Lyn - there's not many positive stories about so each one is very precious because it does encourage others to fight for as long as they can.

I'm not sure it's our location or hospital that ensures Ted's quicker treatment so much as the fact that I have the ability to throw tantrums very effectively without being abusive! I'd encourage other partners and patients to stand their ground, be (nicely but persistently) demanding and use PALS and formal complaints where necessary - I even wrote to the Chief Executive of the local PCT! As a last resort, threaten to go to the media if you have to (but only if you mean it). Don't be scared that it will adversely affect any treatment - quite the reverse.

Of course, all that has to be balanced with acknowledging good/quick service, which I do.

Like you, Lyn, I'm a bit of a PC nerd and as a result have become very much a part of Ted's "team" - at our last appointment the consultant enquired whether I had any news about trials etc to tell him!

Take care

Nicki x

[lts]

Thanks to everyone for their informative replies. When my dad first started his chemo, he was on steroids but was advised to slowly wean himself off them. It was once he came off them he started to notice the side effects of the chemo. He is also on Creon which is I think the enzyme replacement you are referring to and has to take 6 of these over the course of the day. My dad also has bad diarrhoea and needs to go to the toilet about 10 mins after a meal. Do you know if there is anything he can take to prevent this? can he take immodine? Also can you confirm if this is a side effect of the chemo or the cancer?

One thing I would say, although my dad has these side effects, they are bearable for him and he is actually doing really well. When he was first diagnosed, I came on this site and it was gut wrenching to read stories where loved ones were here for an extremely short period of time, months sometimes even weeks. I was devastated when I read this. But here we are almost 5 months later and my dad is still going strong which I am well and truly grateful for.

Thanks everyone for your kind and informative replies.

xxx

Edited January 20, 2011 by lts

[PCUK Nurse Jeni]

Hi Its,

Steroids are used for many different reasons -they reduce swelling and inflammation (ie: in the case of enlarged liver or brain); they are also given to increase appetite. In chemotherapy, they are used short term as an anti-sickness medication, usually over 2 days. When a person is on steroids, there is also the added benefit of what's called the "feel good factor", in that the person has more energy and generally feel better in themselves. You cannot use steroids long term as they have many side effects -muscle weakness of the large muscles(particularly the thighs); altered mood and mood swings; stomach ulcers; thrush; weight gain; thinning of the skin. If they are used long term, there can also be the risk of steroid induced diabetes. The fact that your dad felt more sick when he came off steroids show that his nausea was being controlled by the steroids. However, there are several other anti -sickness tablets which your dad could take. In chemotherapy, often there is a particular regime for anti-sickness pills, but other combinations are available if the first don't work.

Gemcitabine chemotherapy does not have a documented side effect of diarrhoea. This is probably and more likely to be due to the amount of Creon he is taking. Do you know the strength of the creon tablets? they come in different strengths, so he might not be having enough. The fact that he has diarrhoea after meals is a classical sign that he isn't taking enough. Most adults should take 2 x 40,000 units per meal, and something less than that for a snack. He might just need to increase the amount with each meal or snack eaten. This is important. Yes, he can also take immodium, but be vigilant not to become constipated! 2mg of immodium to begin with will help (if the diarrhoea is frequent, he can take 2mg with each episode).It may be that long term he will need to balance creon with immodium to have a regular bowel habit. If this constipates him, he could try 2mg every other night, and see if this regulates things. But, altering the creon will be the best move.

It is good that your dad is coping fairly well with the chemo. Also good that 5 months have elapsed and he is doing well. Some cancers are sensitive to chemotherapy, and can respond better than others. Generally speaking, if the person is feeling well in themselves and coping well, it is an indicator that the disease may be responding. However, he will have another scan at the end of treatment, and take it from there. If the response has been good, there may be a break off treatment.Then he will be reviewed regularly.

Hope this helps,

Jeni.

[millyjo]

Its and Stravvie,

My thoughts are with you both.

Millyjo x

[deb68]

Hello Its,

Just want to echo Millijo's words - thinking of you.

You will find this site hugely supportive and helpful and its fine to be a 'lurker' I am a bit of one myself - the good thing is that everyone is here when you need them.

Debbie.xx

[Stravvie]

Hello Everyone,

Well, Eddie had Chemo last Thursday. Rather late in the day we didn't leave the hospital until 9 pm after treatment. Then we had to travel back to Stockport. (Our Cancer Hospital is the most sophisticated in the world so I have been told. I can honestly believe it after the treatment we had on Thursday)

Eddie was OK on Friday until after his breakfast, porridge, he brought everything back and I though "Oh, Oh, is this the start?" but, thankfully, he has not experienced any more sickness at all. In fact he has ups and downs, the Ups are marvellous he is back to his old quirky self, big smile and happy to be alive. Then the downside, he gets very tired easily, he cannot do the small things he would like to do but he is here and appears to be responding well to his treatment.

Karen, the MacMillan Nurse has told him that he will have episodes like this and not to worry, it is just the treatment reacting. His mouth is still sore, Karen suggested that she fax our Docs to request Corsodyl. What I have found helps him is to liquidise foods, at least he gets the flavour and he is adjusting to this. I make lots of soup and this is an easy way to help him as well trying to eat solids.

Well, tomorrow is another day and we will see what happens. Trying to keep our spirits and think positive.

Good night and God Bless everyone.

Stravvie.

PS An I allowed to say the name of our Hospital?

[pamela]

Hi Stravvie,

I've heard the hospital you are talking about is one of the top ones in the world.They were good to my dad when he went there[he went for blood tests] but decided against the chemo.Sadly he is no longer with us. unfortunately i can't remember the name of the gell he was given to put in his mouth to stop it becoming dry and sore.Yes i've met Karen too.

I found the dr.[can't remember his name either] was brilliant he's based locally but as dealings with the hospital in Stockport and St.Anns and another.He will come out to visit his patients at home,specialises in oncology.Things got moving when he got involved.

Pam

[PCUK Nurse Jeni]

Hi Stravvie,

Good news that Eddie is doing ok after his chemo.

Tiredness is a major side effect of chemotherapy, and it has a cumulative effect. This means that it adds up the more treatment he has had. It is important that he has rest periods and doesn't push himself too much. If he feels tired and like taking a nap, then he should do so! This will help him recharge his batteries and keep well for the treatment.

Regarding the sore mouth -try the corsodyl. Difflam is also a very good mouthwash for folk on chemotherapy. Keeping the mouth clean is very important. Brushing the teeth (or dentures) at least twice a day, with a soft toothbrush so as not to damage the gums. Pineapple is also excellent for the mouth, as it has natural healing properties. Keep the lips moist with something like vaseline. If he develops mouth ulcers, nip them in the bud straight away so they do not affect his eating. The mouthwashes will help with this.

As a general rule of thumb, if Eddie has been ok after first chemo, it is a good indicator of how his treatment will go. Apart from getting more tired, and maybe some slight drops in the blood count,(may or may not happen) it looks like he will cope pretty well.

As for identifying a hospital, generally posters don't tend to do it - and given the aims and rules of the board in most cases it's best to keep it this way. (Occasionally users identify a hospital for a specific purpose, like mentioning a particular trial which is available there).

Jeni.

[Stravvie]

Hello to Nikki, Pam and Jeni,

Many thanks for your messages. Believe me, they are so uplifting to me because I have been feeling rather low when I have been on my own and it is wonderful to think that someone else will take the time to reassure me. Bless you all.

Eddie and I went on Thursday for his second chemo and apart from the dreadfully long wait at the hospital, they were running at 3 hrs late. Anyway, he had his treatment and today he has NOT had any sickness at all. As Jeni said he has been a lot more tired this time but he is feeling very upbeat now. I told him about the cleaning of his mouth (which I have been telling him constantly about, in fact I printed out your answer Jeni and have left it for him to read in the morning.

Another thing, apparently he won't lose his hair with Gemcitabine but most likely it will go a little thin. In fact, the lady in the next chair/bed who had the most luxurious bobbed hair said she lost all hers with the first treatment. The hair I was admiring was a wig. It was beautiful. She had a different form of cancer but once again she was very upbeat and a nice person to meet.

So thanks again for making me feel so positive. Nice to know you.

Stravvie

[PCUK Nurse Jeni]

Hi Stravvie,

Yes, there are some forms of chemo (breast ca mostly) where the hair falls out in about 2 weeks ,the whole lot of it.

Gem is not a drug which causes this -the hair might thin out a bit. This happens sometimes.

Jeni.

[Stravvie]

Hello to everyone,

I have not been able to access my computer for two weeks, I was upgraded by my server and found out I had no access. All fixed up for now.

Thanks to all for your best wishes.

Update on Eddie. He has had his three weeks of Chemo and one week of rest. Thankfully he has not experienced much sickness, just an occasional bout which the anti-sickness pills helped with. He has not lost any hair but is extremely tired all the time and feels weak. It has been difficult for him to exercise because it has been too cold for him. He will have no excuse when the weather warms up because I will be taking him out.

We start again next Thursday on his second cycle. Will be seeing the Doctor and hope to find something positive out. I have missed the contact with everyone on this site and will keep you all updated as you all have.

Stravvie

[Trevor F]

Cardboard taste in the mouth ? That's thrush. I had that and took Nystatin. Cleared it up in no time at all.