Information needed

My husband has recently been diagnosed with inoperable pancreatic cancer that has spread to the lymph nodes. He has been told that most people in his position only live for 1 year without treatment. We seem to be wasting valuable weeks between each appointment to see various specialists and have now got an appointment with an Oncologist. 52 weeks - and we have wasted about 7 of those waiting. He was given a big bag of tablets when he left the hospital, some to stop acid, some anti histamine,(does he continue with these even though the symptoms have gone following a stent being put in?) Colestryamine powder - what is this for? and 2 lots of pain killers, paractamol and Tramadol - Is he going to be in pain? When he left the hospital, we were obviously in a state of shock but no one told us what all of these tablets were for. He hasn't taken the Colestryramine powder or the painkillers yet - should he have taken them? Any help would be appreciated.

Welcome to the forum!

I can empathise with you. Our first dealings with health professionals was not good either. Happily it did get better but we still have to be pro active.

Cholestyramine is for the itch associated with jaundice. My husband took them, plus Questran drink. The itch drove him nuts! If your husband has had as stent fitted and he is not itching I can't see a need to keep taking those tablets.

My husband also still takes a PPI, Lansoprazole, to curb the over production of acid in his gut. He was also prescribed pain killers because he had pain. Maybe they have given you some 'just in case'? I am not a doctor but wouldn't take painkillers until they were needed.

With regards to timescales and starting treatment, again we were in the same boat, but finally it was explained to us that the jaundice needs to go and bilirubin levels return to near normal before chemotherapy can begin. Its frustrating but necessary. The bit that's most frustrating is having to drag the information out of them!

If you want any immediate queries answered you can email or telephone the brilliant nurses on this site who have a wealth of experience and knowledge.

Good luck with your journey and keep us informed.

Best wishes

Julia

Colestyramine also known as Questran is for jaundice. If the stent is working well it shouldn't be needed. Same goes for the antihistamine. I presented with painless jaundice but developed pain a month or two after diagnosis. Fortunately this responded to the chemotherapy and my only regular medication now is Creon to replace the pancreatic enzymes.

The wait is frustrating but the jaundice will have to clear before chemotherapy can be considered, and you may well need a central line fitted.

Are you at a regional pancreatic centre?

Mark

Yes, thats right Mark, I got mixed up. Ray took chlorphenamine and Questran for the itch

Thank you for the information. Yes my husband had a stent fitted. His biliruben count was 520 before it was fitted and after the operation it went up to 660. The surgeon we saw said that the ultrasound showed that the stent had not been fitted correctly and if the count didn't come down he would re-do it himself. Luckily my husbands count has come down and is now at 50. The hospital didn't tell us to keep getting blood tests - we have rung the doctors surgery and arranged them anyway. When I spoke to our own doctor on the phone he was unaware of my husbands condition. Do hospitals notify local GP's of patients condition? I am sorry if these appear basic and stupid questions but neither of us (in our 60's) have fortunately never had much to do with doctors or hospitals. We go today for a consultation with an Oncologist and are hoping for good news as regards that Keith can have some sort of treatment.

Yes, your GP should beware of everything that has happened so far. In my area all information can be accessed by all the health professionals involved. I'm shocked your GP was not notified.

Good luck with your appointment today, let us know how you get on.

Julia

Well we had our visit to the hospital.

Keith has been booked in for another scan next week to see if the cancer on his pancreas has grown since the last scan. This will determine if he can have radiotherapy.

He will also be considered for clinical trials where a new tablet is being used in conjunction with the chemotherapy, which he can have anyway.

The treatment, whichever it is should start in 2-3 weeks.

I am so relieved that something is now happening and did say so.

They then explained to me that though I didn't think that much was going on, the stent that they put in actually saved his life and they said he would probably have not been here without it.

Arlene.

Hi Arlene

That's great you have some idea of when things will start. Let us know what treatment he is going to have when you do.

Yes, the hospital should be telling your GP. Ours sends letters that we are cc'd in to. It would be worth checking when you see the consultant again (or speak to the keyworker if you have one) to find out how that happens then you can always double check that the GP is getting them. I say this as my partners previous GPs practice claimed not to have had the letters that we knew had been sent as we'd got copies of them. Needless to say we changed practice sharpish afterwards (not recommended but we were totally frustrated by them).

All the best with the next scan and future treatment.

Cathy xx

Hi Arlene

I am just waiting for final tests to see if I'm eligible for a similar clinical trial. Luckily for me all my healthcare professionals have been brilliant at keeping me and my family completely informed at every step. I do wonder why this is not standard throughout the NHS as it is so important as there is nothing worse than feeling in the dark and that nothing is happening, particularly with our illness where you do think speed is of the essence.

Good luck with your husband's treatment!

Best wishes - Love and Peace

Mike

Well we have an update on my husbands treatment. The consultant told us that Chemootherapy would start on August 2nd. He also did another scan to see if the cancer on his pancreas was small enough to be able to have radiotherapy as well. The bad news is that the growth is too large. The good news is that it has not grown any more since his last scan about 8 weeks ago. He also mentioned cancer cells in the lymph nodes. We had the option of whether to go ahead with the Chemo or have another biopsy done to see if the cancer cells were the "right type" of cancer to undergo clinical trials. Sorry but I did not understand what the right type of cancer cells are so I cannot elaborate on that. Anyway by having this, it will delay any treatment for about 3 weeks. This is the option we have taken as we realised Chemo does not have too much effect on pancreatic cancer. We also realise that the clinical trials ( if he is allowed to have them ) may not work but at least it is HOPE. Keith's liver is now also functioning normally so the stent is doing it's job so that was good news. For the first time I came out of the hospital with a smile instead of tears.

Hi Arlene,

Glad to hear you are smiling and that you have a plan for treatment to get started.

It sounds like you are focussing on the positives which is all any of us can do with this awful disease, grasp the positives and take things one day at a time.

Take care,

Bee x

Hi Arlene, great to hear you now have a plan in place, it really does make a difference.

Good luck with it and keep us informed.

Best wishes

Julia x

Hi Arlene

I mirror Bee and Julia's comments. Great that Keith is feeling better and that you have options of how to progress.

Let us know if Keith is able to do the trial and what it is when you do.

Cathy xx

Thank you all for your support and good wishes.

A bit of a mixed day. We got a phone call from the hospital and Keith is going for his biopsy in the morning - as fast as that. Super news that things are happening so fast.

Then we had a bad bit where the reality of the inevitable hit us again and were both inconsolable for a while. I must admit that I feel very selfish as most of my tears are fear for the future. Most likely having to give up my home, no life insurance, how will I cope without Keith - it all seems to be about me. I know I must saund awful and I do feel bad about my thoughts. Arlene.

Arlene, do not feel bad about your thoughts or feel you are being selfish. Your fears are entirely normal - it is only natural and human to fear the future when it is so uncertain. So please don't apologise or feel bad about that.

The forum is here so you can feel free to voice your thoughts - maybe to voice things you don't like to say to friends or family.

One thing you might find useful as well might be something like counselling? Our MacMillan nurses have done a referral for both Jonathan and me. He has started his already (I'm on a waiting list). It isn't something that is for everyone but you might find it of help to you? If you ring your local nurses they ought to be able to give you an idea of what is available and how to get referred.

Good news about the biopsy!

Cathy xx

Hi Arlene,

I feel guilty as well thinking about how this is affecting me, in particularly the financial implications, and how my life is going to be in the future when my husband is going through hell, but I am sure everyone is the same. I guess it's so hard because normally in difficult situations, you would be working out what to do for the best together , but you can't do that the same. I don't know about you but I feel alone a lot of the time now, even though he is besides me.

Not sure if that make's sense or helps, but just wanted to assure you that what you are feeling is completely understandable,

Thinking of you and Keith,

Nikki

I was referred 4 counselling and didn't find it very helpful. Perhaps cos I do a bit of cbt myself at work so I knew wot she was goin 2 say b4 she said it! Kept thinking well I wouldn't have said that! Ended up talkin bout her shoes. However 4 some it really helps. As everyone else has said don't feel bad about discussin ur feelings on here. No one judges. We are all in the same boat. Hope all goes well

Hi,

I can only echo what has been said before, there is no right and wrong thoughts in this, I feel and think so many things at random times and there is no logic to any of it , so now I just try to go with the flow and shelf the bad thoughts when they come. We all have to cope with each bit as it comes but I take comfort from knowing I am not alone in this.

Take care

bee xx