Are these symptoms "normal"

[kwaitang]

My husband has been diagnosed with inoperable pancreatic cancer that has spread to his lymph nodes. He started initially with severe acid reflux and jaundice. A stent was fitted and the jaundice and billiruben count eventually came down and he is hoping to start chemotherapy and hopefully clinical trials this Thursday. He went to see our GP last week after having symptoms of feeling ill and losing his voice and was diagnosed as having Oral Thrush. He was prescribed NYSTAN oral suspension which seemed to start working fairly quickly. The doctor suggested that he try to not take the OMERPRAZOLE capsules that had initially been prescribed for the acid reflux as he said that as the stent was working he should not need them. Within 2 days the acid is back. Is this something not related to the fact he had the stent in or is it a "normal" part of pancreatic cancer? One other symptom that is causing a major problem is the constant aching. He has taken PARACETAMOL but they seem to be having little effect and sleeping is a real problem. Any suggestions or help would be appreciated. Arlene.

[Slewis7313]

Hi Arlene, I was likewise diagnosed with inoperable Pancreatic Cancer back in December. My tumour is lower down in the Pancreas, so it has not to date affected the bile duct so I have not had a stent fitted. Again, whilst not affected myself, I do understand oral thrush is one of the side effects of certain drugs. However, as far as the initial symptoms are concerned (abdoinal pain), mine dissappeared towards the end of the first cycle of chemotherpy (3-4 weeks).... I remain pain-free.

Not too much help Arlene, but I am sure our friends on this site will be updating soon with more relevant information.

Take care

Steve

[Slewis7313]

Arlene, I missed the last point. My pain in the early days was also keeping me awake and Paracetamol had become ineffective. I was moved onto Cocodamol which did the trick for me!

Steve

[J_T]

Hi Arlene, my husband's symptoms were similar, he started with 'indigestion' that wouldn't shift, then got jaundice. He takes Lansoprazole which is similar to omeprazole. He took it before he had his stents and still takes it daily 6 months down the line.

Julia

[kwaitang]

Hi Steve. Thanks for the info. Perhaps Keith may be pain free after he starts the chemo like you are. I hope so.

I have just had a battle with the local GP'S receptionist. I phoned and asked for a prescription and apparently I have to take a note down, listing the medication we require, then go back tomorrow to collect the prescription for the medication for the acid. I said well make me an appointment to see the doctor then only to be told they were full today and to ring back at 8am tomorrow. As it was only 5 minutes past 8 when we were speaking, I am afraid I "lost it". Within minutes the doctor was on the phone and printing out a prescription for us. Why is everything a battle? We seem to spend most of our precious time waiting or having to fight our way past receptionists.

Oh well at least we have an appointment for the hopspital.

Best wishes to you Steve and sorry for the rant but it does relieve the pressure. Arlene.

[Slewis7313]

I just don't get it with some of these Doctors / Receptionists. My GP referred me very quickly when I was first poorly and I had a specialist appointment within 2 weeks (just as well)! After diganosis, she gave me a list of telephone numbers where she could be contacted during the week (she works at several surgeries). If I need her, I am to phone the numbers on the list and insist on speaking to her directly. She has been fantastic from the outset and as you say, it should not be such a struggle.

Good luck!

Steve

[Sones]

Hi Arlene I had severe stomach pain prior to diagnosis but didn't go yellow but like Steve resorted to stronger prescribed pain meds.

Steve you are so lucky to have such a wonderful G.P, I can remember sitting in my G.P surgery sobbing and asking them to do something, they just gave me yet more stronger pain killers. I waited over two years for a scan and that was only done after I'd collapsed and taken to A&E.

Your right Arlene you shouldn't have to fight, this illness is hard enough to deal with. Hopefully once Keith sees his consultant at the hospital you will be given a named specialist nurse who you can contact. Don't ever worry about having a rant on this site, we all do from time to time.

Take care.

Sue.x

[karen17]

Hi everyone,

Not posted for a while as feeling a bit down but have been following your posts. Bob was also more or less pain free during chemo but since completing course has developed pain and jaundice. Has no energy. All odd to me when scan results less than a month ago were good. Admitted for stent today but sent home as blood clotting not right so now on vitamin k till weds when they will try again. Itching like mad with nothing controlling it. I know the itching and skin colour will improve with a stent and just hope the pain is not pointing to something sinister. Co-codamol not effective so now on meptid which is also not great. Any ideas folks?

[KATB]

Oh Karen, so sorry to hear Bob is not feeling great.

Have you got Questran for the itching - it comes in sachets and is mixed with water. I think Dad found that helpful when he had the itching. He was really unwell with the jaundice but was miles better once the stent was sorted so fingers crossed it can go ahead for Bob soon.

Thinking of you

K

x

[karen17]

Thank u Kate we've not heard of that one. Will call gp 2moro. Did your dad have pain too?

[Grainne92]

Hi I don't know if this will be any help but my mum had a good bit of pain before the stent and also again a week after it one night she was rushed into hospital because she kept vomiting and had such a bad pain in her side but there was no reason for it, they just got fluids into her and pain relief. She still has a little pain every so often but she hasn't started chemo yet. We are seeing her oncologist tomorrow to discuss her treatment plan. Her doctor prescribed her oramorph which is slow release form of morphine that she takes a small dose of when the pain is bad, this may be a suggestion to mention to the doctor to reduce pain.

[PCUK Nurse Dianne]

Hi Arlene,

Welcome to the forum family, and I am sure you will find this a very supportive and helpful environment. It is great that Keith has had a stent inserted already, and unfortunate that he has thrush, this in itself can be a painful thing to endure. I would disagree with your GP's idea about the Omeprazole. Most people will find that they will need this for some time due to reflux. Also, your husband will no doubt benefit from some pancreatic replacement medication (comes in form of tablets) and most common one is Creon. This is to replace the pancreatic enzyme that is not being produced sufficiently by the pancreas to aid in breakdown and absorption of food eaten. One of the other effects of the pancreatic enzymes is that it often helps to alkalinise some of the acids, thus if there is not enough enzyme produced may be why people with pancreatic cancer have these symptoms of reflux and indigestion in the early days of diagnosis. Also if Keith is given Creon (or similar medication) and he should be, he would need to continue the Omeprazole whilst taking this so that the gastric juices that are high in acid do not break down the tablet too quickly. I am happy to talk through this or give your more in depth discussion via email if this would help.

As for the pain relief, certainly paracetamol may not be enough for Keith at present. I will take the opportunity to email you at length Arlene if that is ok, as this may be too much information for the forum. Thank you to all the other forum members for their input as always, your experiences are invaluable to each other.

Dianne,

Support Team

[KATB]

Hi Karen - yes he did have pain. He had pain for months and it almost disappeared when he was on FOLFIRINOX (but has since returned as this regimen was stopped )

He takes MST twice a day, paracetamol every 4 hours and then Oramorph liquid as needed. He still has a lot of pain/discomfort at the moment though.

For the itching he had the Questran sachets plus the chlorpheniramine tablets I think.

K

x

[kwaitang]

Hi Diane. Yes please do email me. We didn't realise he may need Creon or something like. Does anyone know what Colestyramine powder is for? I found this in my husbands "bag of goodies" from the hospital but don't know if he has to take it all the time or why. So sorry if I seem to be clueless. We have never had too much to do with medicine's or Doctors. My husband does not ask questions and just seem to accept whatever is handed to him. He is very down at the moment. I have a number for a nurse at the hospital but I feel daft to ring her for tiny little things. Arlene.

[KATB]

The cholestyramine powder is to relieve itching from jaundice if he needs it.

Don't hesitate to ring the nurses if you need them - that's what they are there for.

K

x

[marie souter]

Hi there,

I was going to suggest questran but I can see someone already has : Without a doubt, once the stent has been fitted, the horrible itching dimishes around a week later. The only thing that helped my mom a little was cold flannels placed over the itches and trying not to overheat as this makes it worse. It's a horrendous side effect when they're going through so much already.

When my mom was in that state, I couldn't see her getting out of it - she looked so ill. That was Easter this year. 5 mths on, and shes out everyday. She's on fentanyl patches for pain as she doesnt suit oxycodone or morphine, levomapromazine for nausea and buscopan for her colic like pains on eating, when they bother her too much. Other than a pressure sore and chest infection atm, shes been doing really well. You will not believe the difference once the stent is placed! I hope he feels better soon. If hes been losing weight etc..., it might be an idea to get him on creon capsules to help him break down the fat in his food. Moms weight has remained stable since shes been taking them, where currently she's lost 6 stone in a year xxx