my wife

[Drew]

Hello all , my wife was diagnosed in April last year and had the whipple procedure to remove a tumor in the head of the pancreas and around the main artery . The surgery was a success and they were able to remove 20 lymph nodes from the area , unfortunately 8 of the nodes had cancer. We had a great family holiday in July and she was doing fairly well after the op. Chemo started in august but a scan in Oct showed 3 tumors in the liver and swollen nodes pressing against the spinal nerves. This caused a lot of pain for her and she was put on oxycontin and oxynorm for breakthrough . The type of chemo changed from tablet to drip and she tolerated it very well.

From diagnosis to now she has lost 4 stone. A scan last week showed further tumors in the liver and no sign of the chemo working .

My wife is 45 and we are devastated at the news. She is in the hands of the palliative care team hospice nurse now only to treat her pain. She is now on oxycontin 80 mg every 12 hours and breakthrough of 20 mg oxynorm every 4 hours ,250 mg of pregablin every 12 hours. The pain is now sorted but she is always sleepy and confused .

This is a hateful cancer.

[louiepc]

Drew

I am so very sorry to hear of your wife's news. You are so true, this is absolutely a hateful cancer.

I lost my lovely Mum 2 weeks ago to this cancer. Diagnosed 14 August 2011 passed away 30 December 2011.

My heartfelt love and best wishes go out to you both.

Louie x

[Drew]

Thanks for your concern Louie and so sorry to hear of your mothers passing.

[Mistipop]

I'm so sorry to hear this. My mum was diagnosed with pancreatic cancer in october and is under the care of the palliative team at the hospice. My thoughts are with you. You wouldn't wish this on your worst enemy.

[Drew]

It's like a living Hell ! but somehow you get through it.I don't know were the strength comes from.

My wife is on so many tablets I have had to take them off her, cause she gets so confused and agitated _ she is a very independent person , or should I say was !

She was admitted to hospital in November with pain in her side that turned out to be blood clots in both lungs.She was in for a week and put on clexane injections ( my daughter and I give her this morning and night ). After 5 days at home her legs had swollen so I rang the oncology help line. She was admitted again for another week with more clots in her leg, groin, and lungs. A scan last week showed the clots are still there and have increased in number.

What's next ? Wish we could just wake up now I've had enough of this nightmare now.

[rachelqt]

Hi Drew

Im so sorry to hear about your wife. It is just heart breaking. PC seem to test you to the limit. Its truely awful watching a loved one deteriorate and not a damm thing we can do about it.

My Dad was diganosed in September, although he is having chemo, it angers me that it is not to cure him and someday it will catch up with him. Although im grateful for having some extra time with him now.

I hope you find this forum a support, there is great people on her to give advice or support when needed.

Take care..Rachel

[Drew]

Hi Rachel

I do find this site a way to release by posting our experience but I don't want to be negative and stop others hope, I do believe in some cases there is hope and someday there will be better treatment to to increase the survival rate for this cancer.

My wifes brother died from pc 5 years ago, he was 37. We now fear for our 18 year old daughter, no screening for early detection even though we have 2 cases in the family. I don't look forward to the future anymore.

The support we have from family and friends has been great from the start. The nurses and consultants in the xx and xx suite are the best in the world. Palliative care from the XX and Hospice have been excellent. But it is amazing how alone I still feel from time to time.

Drew x

[lynbo]

Hi

I agree about early detection, my husband was 39 and we have now found that his uncle also had PC

xxxxxxx

[PCUK Nurse Jeni]

Hi Drew,

So sorry to hear about your wife, and what you are all going through at the moment.

Blood clots are common in people with pancreatic cancer, and the risk increases again with chemotherapy, which your wife was on. The treatment is long term, so she will need to be on these for as long as necessary.

If the pain becomes an issue again, your wife could be referred for a nerve block. These are usually very effective, and can remove the need for medication which can cause excessive drowsiness and confusion.

Also, it would be well worth you contacting Europac with regard to screening for your daughter, and indeed, any children of your wife's brother. The link is as follows:

http://www.europac-org.eu/

If you think I can be of any further assistance, please contact me at support@pancreaticcancer.org.uk.

Kind regards,

Jeni

[Drew]

Hi Jeni and thanks for your contact with europac I will ne looking into it.

Have you or anyone heard anything regarding complementry treatment working for pc . I have been given contact details for a place in Belfast who treat cancer, and I've been told of people told by oncology that chemo failed to work and nothing else could be done for them. They then received this complementry treatment and have survived 4 years so far ?

Here is one of the treatments

Multi Mineral Vitamin Drips and High Dose VitC Drips – introduces essential nutrients directly into the body via the bloodstream, boosts the immune system, helps to ward off disease and promotes optimal health. High dose VitC given intravenously has been shown to be toxic to viruses and cancer cells.

It all sounds a bit sus to me but I would be willing to give it a go.

What do you think ?

Thanks again Drew

[laura]

hello drew, have been reading your posts and haven't quite known what to write to you, but not doing so is a cop out !,i am so sorry to know what you, your wife and daughter are going thru, as already been said this is such a sneaky, horrible cancer, with so many differant outcomes,we, thankfully are experiencing a peaceful time, i know how very lucky we are at the moment,and i'm scared to look to far forward, even with good results, two shrinkages and now static, but my hubby has had 19 months of chemo, we still live for the moment,re your last post you could find yourself chasing shadows and missing out on time with your family, but i do understand your need to feel you are doing something that may help your wife, there are such charletons out there that will get people to part with money, that if you werent under such pressure you perhaps would not do. anyway just wanted to let you know that i also am thinking of you all, my regards to your wife and daughter.

love laura x

[Drew]

Hi Laura

I find life is all about people not knowing what to say and I fully understand .If the shoe was on the other foot I would be the same.

Good to hear your husbands news, gives us all some hope, and long may it continue for him.

As for this other treatment, I am being tortured to contact these people by family, but we can do without false hope, if that's what it is. I haven't even mentioned it to my wife, I think she had had enough and don't think she could cope with more bad news. But at the back of my head I need to know more. I have looked at their web site and it all looks good - proper qualified doctors and nurses ??? If it only gets her an extra month is it worth putting her through it. That sounds like a real harsh thing to say but it is reality and I hate it. Too many options and questions going about in my head , I need a qualified person to lay it straight for me. To be honest the money side of it hasn't even crossed my mind until now, but if I knew it worked I'd rob a bank for it lol.

If these things can work why do oncology not recommend it after chemo fails, or why don't they try it before or even alongside chemo. See too many questions!!

We live in hope , and more research

All the very best of luck to you and your hubby.

Drew

[rachelqt]

Hi Drew,

We are getting our treatment and care at the [name removed -moderator] Hospital. While the care is good I feel frustrated because I feel we have a postcode lottery over here. I see so many different types of Chemos other people are receiving in the UK and anytime I mention these or ask about clinical trials I get cut short and told they only do the standard Chemotherapy and leave it at that! They are not very willing to discuss other options.

If you dont mind could you post the address of this place in Belfast, I would not mind having a look into it also.

I hope you get some insight with Europac. My Gran(83) died very quickly with what they say was complications and infections in the stomach area. I have my doubts on this now that my Dad(60) has been diganosed with PC. It really makes you wonder about genitics and PC.

Chin up, takecare..Rachel

[Drew]

Hi Rachel, here is the web site and address.

www.synergyhealthcareni.com

Telephone: 028 9070 9300   Fax: 028 9070 9309   Email: synergy.health@btclick.com

The Magee Clinic, 300 Cregagh Road, Belfast, County Antrim, BT6 9EW

I don't know what to do, Heather is very sleepy and confused due to the oxy drugs sit wer trying to sort that. I haven't mentioned to her yet, I don't want to build false hope for us. My dad has been on the phone again this morning to see if I have contacted them yet. It's doing my head in.

Drew

[laura]

hi drew, no harm in you ringing them is there, then you can truthfully say to your dad you have, could your dad take this action on board for you? might make him feel useful.

i dont think anyone can give any of us a definative answer to our questions of will it work, how long, what side effect and so on and on -----------

could you discuss with your wife what she wants? iys often the one thing we dont do, we think about what we want, difficult one but you may be surprised, coz after all its their pain, their body, we are just the supporting cast in this drama.

hope you can stop your head "buzzing round" ask others to take some of the strain if they are willing,

thinking of you laura xx

[Drew]

I sent this clinic an email asking for more detail regarding cancer treatment.

The reply was very informative with links to other sites but the treatment was mad. You'd need to change your entire lifestyle with an intense 8 weeks of treatments then another 8 weeks less intense. It all sounds good and looked good but I could find no evidence of increased survival. Plenty of good news stories from people it worked for but no % figures. And as you can imagine cost thousands ( but if it worked with evidence you'd find the money for it ).

I spent all day researching on the internet.

I also got information and advice from pc UK and spoke to Heather about it.We discussed it for a while and Heather decided shed had enough of needles and couldn't cope with anymore false hope. Based on what I found on the net I believe she made the right call. So our future is in Gods hands.

Good luck to all affected and thanks for the advice.

Drew xxx

[laura]

hello drew and heather, glad you did some research and that it helped you both make a decision,so glad you talked to heather, such a difficult thing to do under the circumstances isn't it? well done, perhaps you both can go on living a new normal life and enjoy each other, i really feel for you all, chin up. love laura xx

[PCUK Nurse Jeni]

Drew,

Well done on all your research. I think you have done a fine job of finding out all you can to help Heather, AND taking her feelings/thoughts into account. I think you have done all that you can, and at least you can know inside you that you have made enquiries about what is on offer.

I am a bit taken aback that the treatment cost thousands - I thought probably a few hundred all-right, but not as much as that. You have taken a good stance, and were right to ask for the evidence.

I wish Heather and yourself every good wish at this difficult time, and I hope that there can be some hope for you all.

Kind regards,

Jeni.

[Drew]

We've had a busy few days. Heathers brother came home from England to see her for the weekend, it gave her a bit of a boost to see him again and he has promised to return in a few weeks. Gives Heather something to look forward too. Jade our daughter has her upper sixth year formal in a fee weeks also so Heather and her had some fun spending money on a dress lol.

We managed to see the genetic people and have registered with europac, Heathers mother came with us they they also have her blood for research. Big brother is going to see his local genetic people this week too, so I think we are doing all we can on the research side of things. Big thanks to Jeni for the contact. It'd good to know there may be help for our children in the future, so hopefully they succeed and gain plenty of support and funding.

Heather has been very sleepy and confused for a long time now, we had been putting it down the oxy meds. They have been changed to MST now but I haven't noticed any changes. Blood tests have showen a drop in hemoglobin ( is that spelt wright lol ) over 2 weeks so Heather is having a blood transfusion as I ramble on my phone lol , she is sleeping again and I feel like jumping into the bed beside her. The nurses keep catching me on with my eyes closed so its a bit of a running joke at the minute, maybe the novelty will wear off soon so I can get to sleep lol.

Just a wee update to keep me awake.

Drew x

[PCUK Nurse Jeni]

Hi Drew,

Good to hear some news on how Heather is doing. Glad that she had a visit from "across the water"! These events always cheer people up. Great news about Europac, and that was quick too! I think they are great, to be honest, as they always deal quickly with anyone we refer to them, so a thumbs up for them. Let's hope this big screening project they are carrying out will give some concrete results which will help in the future.

Indeed, you spelt haemoglobin correctly! This should make a big difference to Heather in terms of tiredness and energy levels. Lets hope so anyhow. Most people get a boost after an transfusion, and seem to be less tired. I can't remember now if I mentioned nerve blocks to you in an earlier post, but I wonder if her consultant would consider referring her to the anaesthetic team for consideration of this? The idea of them is that painkillers are not needed, as the block should take care of all pain. This would really sort out the drowsiness from medication, and help Heather to have a better quality of life. Anyhow, something to think about.

Kind regards,

Jeni.

[Drew]

Hi all,

Heather had the blood transfusion last week and it hasn't made a bit of a difference.

We had 2 appointments today , surgical and oncologist consultants - both said the same thing, the cancer is causing the fatigue and the MST is adding to it but it is giving her a better quality of life. Some life ah ! I asked both about nerve block and they both said it would help with the nerve pain in her back but that she would still need the MST for the pain she is now getting in het stomach. Sort of defeats the purpose.

Oncologist said trials are not available in Heathers case due to the aggressiveness of her cancer. Heathers cancer was removed surgically and came back during preventative treatments so clinical trials would only mean her having to deal with more side effects along with her current issues. The trials are to find safe doses to reduce effects.

He told us we have very limited time.

Deep down we already knew all these things, but hearing it was Hell.

[Mistipop]

Hey Drew,

It's just terrible isn't it? my mum, who is in the hospice now, is also extremely tired and confused. I keep asking why the confusion and night-time hallucinations, they tell us it could be the medicine or could be the stage of the cancer. I feel awful leaving her at the hospice but she lives alone and i am a single parent so we would really really struggle to have her home. Saying that, it's her birthday Wednesday and we are hoping she can come home for the afternoon.

I hope you're all bearing up ok, it's so hard on everyone involved.

X

[CFF]

Oh Drew,

I'm so sorry - I completely understand kind of 'knowing' but until you hear it from a doctor you can hold onto a shred of hope. But hearing 'the news' is just heartbreaking. I don't know what to say really other than I'm thinking of you and Heather and your family. Be as brave as you can - and cherish every minute

xx

[laura]

hello drew and mistipop, really sorry to hear about heather, and also your mum mistipop.what an absolutle bummer for you all, i just dont know what to say to any of you any more, everything sounds so trite, you want so much more dont you, my love and thoughts to you and may everything be peaceful, so very very sorry love laura xxxx

[louiepc]

Dear drew and mistipop, I am so sorry for both of you, it is the most awful feeling being told this news. A real stomach wrenching moment. Be there as much as you can, cherish every smile, laugh, even a glimpse of one. These are the memories that will carry you through. I hope things are as peaceful and pain free as they can be.

Much love louie xxx