my wife was diagnosed about 4 days ag... - Pancreatic Cancer...
my wife was diagnosed about 4 days ago she is 60 years. she has stage 4 the type of cancer not yet diagnosed. What treatment can she expect?
Hi Robert , welcome to the site , i am 60 also and was diagnosed last oct , my cancer is terminal as it wrapped around two veins , they may ask for an EUS to diagnose the type of cancer , it is a more detailed endoscopy to extract cells from the tumour . I am currently on chemo GEMPAC , It is the chemo they usually give for PC . We all on this site try to keep each other motivated , and we all help each other as best we can . Ihope this as been a little help in some way and i send you both the very best , keep us posted . Love Cath x x
Hi Cath
thank you for responding so quickly. It is very helpful to know that there are others thatunderstand. May I ask how active you are now? Can you live a nearly normal life?
I really do ofer my sincere sympathy. Do you have a partner and if so how is he/she coping?
love
Robert
xx
Hi Robert , my mum was diagnosed in Sept 2011, at the age of 68, she'd not previously been ill or even felt unwell before she started to turn jaundiced and that resulted in her diagnosis of PC. She was referred to a specialist cancer centre and has just finished 5 out of 6 months of Gem Cap chemotherapy , unfortunatley they cant operate on mums cancer as it had already spread to the liver which is very common with this cancer, it does not stay in the primary site for very long! Is your wife a suitable candidate for surgery? The pancreas is hidden very deep inside the body and is difficult to reach but it is operable in some cases. Mum has felt pretty well on the chemo , it's just started now to make her feel sick , but you can have medication to relieve the sumptoms of that . You must be thinking all sorts now , so must your wife! I think we all went into shock when we found out what it was , reading on the internet is quite scary and the general prognosis is not good, but there are some survivors and mums still here 6 months on , fighting , I would suggest you maybe contact Ali Stunt who runs this web site and a survivor of this disease and also there is a face book page called friend in support of pancreatic cancer , they are all people who have lost someone or who are suffering or helping people with someone suffering , it's a great place for advice , information and may help answer some of your questions .
I wish you and your wife the very best of luck , make sure you dont get lost in the system ( NHS) always keep pushing and challenging and they do all the approprite tests so you know exactly what your dealing with as there are quite a few pancreatic cancers, mums was the most common type adenacarcinoma in the head of the pancreas.
Sending you lots of positive thoughts , Nessy x
Dear Nessy
thyank you so much for this answer. It is good news that your mum is still fighting.
Isabel too has stage 4 but we will only be discussing treatment options this week. She was diagnosed just 5 days ago.
I will contact Ali stunt.
So grateful for your reply. A small light in a sea of dakness.
Hi Robert. So sorry to hear that your wife has been diagnosed with this dreadful disease. I was diagnosed with PC in Dec 2009 aged 39yrs-a huge shock as i had been so well prior to this. I fortunately was one of the lucky ones and found it early so immediately had a distal pancreatectomy to remove the tumour followd by 6mths of chemo which did unfortunately make me feel very sick. However, 2 years down the line i am having regular scans and remain 'disease free'. I hope you can find some comfort and hope in the knowledge that it isnt always the dreadful prognosis we expect with this cancer. My love and best wishes go to you, your wife and your family. Manny.
Hi Manny
So grateful for the message. Unfortunately Isabel has stage 4 and surgery is not, apparently an option.
We are all in despair and trying hard to find some solace somewhere.
best
Robert
Hi Robert, the answer to your question is no i cant lead the life i had , i worked full time up to diagnosis , had to give up work and not as active as i used to be ,i get tired very quickly and the chemo knocks me out for a few days . I dont have a partner , i live alone , but have 2 grown up kids who pop in constantly . i had been unwell for the most part of 2011 , If you go onto patients stories on this site you will find my story , Ali asked me if i would do it . It was a huge shck when i was diagnosed and the worst part of it was i knew exactly what i was dealing with , as my lovely brother passed away 3 years ago with the same cancer . I hope you get good news , keep us posted , possitive mind thoughts . Love Cath x x
Dear Cath
Thank you so much for your honesty. I am truly sorry you have suffered so but I do admire your courage in trying to help others. I have read your story and admire you all the more.
Right now I do not know how I can go on. Our sons live many miles away but are trying to ensure that one is always here with us.
It is the lack of any hope that is so debilitating and everything is so tiring for Isabel even now though we may today have at least made some progress with pain relief.
Not sure if I want to carry on when/if the worst happens.
love
Robert
Hi Robert , please dont think that your in this alone , although the world probably feels like a very lonley place almost as if your in a bubble , is the only way I can describe it . Both my dad , sister and brother have lived with the prospect of losing mum since we were told last September we didn't know how long she would have , but if your wife is strong enough to go through Chemo I would recommend it .The regime mum is on and Cath is quite well tolerated and buys precious time , we all hope that in the very near future a possible cure or new treatment will be found and this cancer has been upgraded to a priority for cancer research Uk.
I cant pretend it's not difficult , every day is a battle to stay fit and well for mum but it can be done . As I said earlier if your on face book check out friend in support of pancreatic cancer, they are so supportive and know exactly what your going through , they've all been there themselves and may help in some small way . Please keep us updated on how things progress with your wifes treatment later in the week . Keep your chin up , I would also suggest to read Wendy's Army blog the link is on Ali's site her husband posted a blog when his wife Wendy was diagnosed at the age of 55, you might find it helps read from the beginning Feb 2011 she was a very inspirational lady and has done alot to raise awareness of this type of cancer.
My father isn't coping particularily well , I think it must be so difficult for the partners mum and dad have been married 47 years! Best wishes, Nessy x
Robert, I lost my husband 14th January 2012 & my only reason to live is to fight this evil cancer......so please stay strong xx
Hi Robert
My husband who is 47 years old was diagnosed with pc in august of 2011...the cancer unfortunatly is wrapped around an artery so he has gone through months of chemo and radiation hoping to have it shrink away from artery..we go on March 20 to find out if it will be possible for him to have surgery....he has kept as normal of a life as he can...he has only missed less than 2 weeks of work since diagnosis...but he is very tired...has lost over 60 pounds...has trouble eating....but he is a fighter so we are praying he gets to have the whipples procedure done...although that is a very difficult surgery, I think it is his only chance...As for me...well I am dealing with it as best as I can..which is not very well..I act strong around him of corse but worry all the time and cry almost every night..it is very hard and I am so sorry you are BOTH going through this....But this site and the facebook site have helped me soooo much..they are all soooo supportive and offer great advise....glad you found your way here...there are people who understand and do care very much ...
I also know exactly how you feel when you say u dont know if you want to carry on if the worst happens....I feel exactly the same way...but please try to hold on...you can talk out your feelings everyday..all day on here and facebook site..and the love and support you get back helps alot....
I am praying for you and your wife....Please try the facebook site....you will love it..
With love..Miki xxxx
Dear dear Nessy and Miki
thank you SO much for these words. I know I have to find strength from somewhere for isabel. I pray that tonight we will at least be told that she can have treatment.
I will try the face book site though I don't know how to access it?
love
Robert
xxxx
Hi Robert , I used my sons facebook page to make a friend request , as I dont use facebook myself , if you have an account or one of your sons has a facebook account , if you make the request , you will be accepted into the group by one of them .There are several hundred people in the group and you can ask anything , my sister Adele is on there too . We've found it a great source of information and support , they are a lovely bunch of people , who have all been through , what your going through now . It will give you some strength. Regards, Nessy x
Hi Nessy
I am really sorry but I simply do not know how to do this. Who am I requesting to join? How do I get to their page or site to do so?
really sorry - mind a bit numb at present.
love
Robert
XXX
Dont worry Robert , I fully understand, do you have a facebook account ?
If you dont you would have to create one , or if one of your sons is there , access through there facebook page , if you type into the search bar at the top of facebook home page 'Families in support of pancreatic cancer awareness' you then need to make a request to join the group and someone will accept you as a new friend , then you can join the on line community .
If you havn't been o facebook before , probably best to ask someone who has to talk you through the set up if it's a new account for yourself .
Are your sons quite technically minded to help you through this process?
Good luck. Nessy x
Dear nessy
thank you i will try that. I am sorry to be such a trouble.
love
Robert
xxx
Like I said , dont worry , it's really no trouble , you will have good days and bad days over the coming days, weeks and months. I hope you find it a help thats all , it has done for me and my sister and Cath , Mikki is on there too , we all try and help / support each other .
Best wishes, Nessy x
Hi robert , Jayne P who moderates this site , is also the lady who set up the facebook page, we've been talking about and you can find the link under My Story on this site off the home page.
Hope that helps.
Nessy x
Robert please dont ever think you are alone , we are all on here to support each other , it is a very hard road to be walking on , i try and keep strong for my kids and grandkids , as they are suffering with me , just like you and your family are . Do you have a
Sorry i sent the message before i had finished . What i was saying , do you have a facebook page , Never be afraid of asking questions when you see specialists , my kids always come with me and ask things as i tend to forget ,. Please dont give up , you have to fight this together. We are all here for each other for support , Much love Cath x x
Dear Robert,
I have been reading these posts from afar and all contributors have given lots of fantastic advice - they have either been through this or are currently going through it. You really are not alone. If you would like to chat to me - please get in touch via Pancreatic Cancer Action on 01428 656269 or email ali@panact.org. I will be very happy to help in whatever way I can.
All the best
Ali
We are seeing the oncologist on Thursday with a probable view to Chemotherapy. Our gastroenterologist said that its impossible to tell beforehand what the individual reaction to chemo will be. He said that in about one third of cases it has no effect, in another third it stops growth but does not reduce the tunour and for about one third it does have a reducing effect.
Isabel reacts badly to most medicines and she is very worried that the chemo experience will be awful. Unless it can give a subtantial amount of quality extra time she is unwilling to live with a poor quality of life or in a constant befuddled daze.
We are hoping to speak with Macmillan and with the local hospice later this week too we hope. Does anyone have any experience of these charities?
If things get too bad she wants to go to Zurich whilst she retains some powers of decision. I hate the very idea but could not bear to see her in agony and unable to do anything herself.
Despite sleeping pills I can barely get more than 3 or 4 hours fitful sleep. Not sure I can cope with the tiredness or the constant fear.
Thanks for all the words of support and the information. I am trying to offer support to everyone too but it is so hard to forget my own situation - so I apologise for that.
love
Robert
xx
Hi Robert, My name is Christine, i am the sister of Cathdw1. I have been reading these post's and you have been given lot's of good advice, please don't give up hope. You, Isabel and your family, must be still an a state of shock, Isabel, having only been diagnosed a few days ago.Our family have been though this once, with my brother and now we face it again, with Cath , it's not easy, but we, the family, must be strong for our loved one's, who are fighting this thing they call Pancreatic Cancer. I find the hardest thing for me, is to accept the unknown and the lack of control I feel ,It is very difficult to watch someone you love suffer, all you can do is to support their wishes and be there for them.. I wish Isabel,you and your family all my best wishes, be strong don't give up hope. Christine xx
It is as my sister points out , very early stage after diagnosis , myself and my family were in total shock for weeks , i think personally it took me 4to 6 weeks before i could think with any logic. you have to try and be strong and not make rash decisions , help is never far away , you just have to ask , talk to Ali she is easy to talk to and knows more than most on this disease . my love Cath x x
I am so very grateful for this support. I am in despair most of the time with only occasional slightly better periods. I need to be more aware of the horror my sons are experiencing. They just make sure they occupy every minute and repeatedly tell me to do the same.
I too am trying to fill the time with jobs. I am retired but have an active life with interests in several areas. Still the time weighs heavy. We see the oncologist on thursday and it looks like there will be the option of Chemo. We have been told that this is perhaps less severe than for some cancers but even if succesful it only delays the inevitable.
bless you all
Robert
Hi Robert , i hope you get some more answers on thursday , as for the chemo , yes like in my case its pallative treatment , but i want to be around as long as possible to enjoy time i have with my kids and grandkids and my family . chemo is'nt as harsh as some, my hair still intact , in my case its mostly tiredness for a few days . x x Cath
Hi Robert. My husband was diagnosed in December 2011. His first diagnosis was Type 1 Diabetes in October 2011, so it was such a shock when he became jaundiced and lost a considerable amount of weight and lost his appetite completely. He was admitted for the Whipple procedure but during the operation it was found that the tumour was round an artery so the tumour was not removed. The obstruction of the bile duct which was causing the jaundice was moved so fortunately he does not have the awful symptoms of jaundice and has now had 5 sessions of Gemcitibine chemotherapy. Myself and my two children are I think still in shock. My husband has hardly ever had a cold! He was sooo fit even at the age of 69. The disappointment after the operation was extremely difficult to bear but we have to fight on. At first, like your wife, he was unsure about going ahead with the chemo but we told him - try it - if you really feel awful you can stop. Well he has one bad day the day after the treatment which is once a week for 3 weeks and then one week off. The bad day consists of nausea but he isn't actually sick and he just doesn't want to eat and he is wiped out with tiredness and lethargy. On the other days he is able to carry out small tasks and has planted out vegetables but just does a little at a time and during the recent spell of lovely weather he managed to mow the lawn. We have been to the cinema a couple of times and out for a drink a few times but he doesn't want to eat out as he only wants small meals. We find little and often works best. He hasn't lost any hair and is now regaining a little weight. He was 14stone 2lbs before diagnosis and dropped to less than 11 stone but he is on the way back up slowly. During the next two gaps in the chemo we are hoping to get away for a few days with me driving to Devon but we shall wait and see how he is, but its good to have something nice to do planned. I do hope your wife copes with the chemo and am sending a cyber hug for you and your family. Its so hard for the family and like you in private I cry a lot.
