Please Help Just found out my Husband has Pancreatic Cancer Diagnosed with Stage 3.

[Wiscwife]

After reading all these messages first of all my heart goes out to each and everyone of you that has this cancer and has lost someone to this cancer, My husband just turned 57 yrs old yesterday, was diagnosed with pancreatic cancer stage 3 on 3-14-2012, I am so scared for him, and what we will have to be going though, can anyone give me advise if the treatments help? I understand that its going to be a long road ahead of us, but I don't know what to say to him he does not even want to talk about it. Please Help Thank you, Wiscwife. May God Bless each and everyone of us. my prayers are with everyone on this site.

[Debbz]

Hi, Im sorry to hear of your Husband's diagnosis. I would say everytime he is due to see a specialist over the forthcoming weeks that you are present, although they are very good at explaining all procedures, you do tend to be "bombarded" with a lot of information. Try and get as much information from them as you possible can and dont be afraid to ask anything! Also, try not to read too much on the cancer on various websites, it can be misleading or not accruate for your Husband and frighten you unnecessarily. I hope things go well. Deb.....

[Wiscwife in reply to Debbz]

Thank you very much for responing to this Deb, and the advise We just don't know what we are in for.. can I please ask do you or a love one have this kind of cancer?

[Debbz in reply to Wiscwife]

Sadly my Dad passed away with Pancreatic Cancer in April 2011. He was diagnosed February 2011. I cared for him for when he first feel ill until his death. He died aged 72.

[Wiscwife in reply to Debbz]

I am so sorry to hear about your father Deb my heart goes out to each and everyone of you that has this cancer and is dealing with this cancer. May God Bless you always. Wiscwife.

[cathdw1]

Hi , welcome to the site , my name is Cath , i also have this horrible cancer , i have a terminal prognosis as its wrapped around 2 veins ,. When i first got this news myself and my family were shell shocked to say the least . When i go to see oncologist or any other procedures my son and daughter- in - law insist they go with me as what i dont take in one of them will , i also write questions down as i go along , while its fresh in my mind . Its early days and you will still be in shock , i think it was about a month before it came clear what i was dealing with , it is a hard road , but try and get him to talk , i talk to anyone that will listen . If you go onto patients stories on this site , you will find mine . I wish you all the best x x x Cath

[Wiscwife in reply to cathdw1]

I am so sorry to hear that you too have this cancer, Cath, just overwhelming all these doctor's calling and making the appointments. We have our first appointment with the oncologist on march 27th can you please tell me what do they do on this appointment? I know its going to be a long road for us, my husband after I told him the oncologist called for us to come in that day he started to cry. I feel so bad for him and don't know what to do.But thank you very much for the respond to this.. best of luck to you also, and may god be with you and your family too. xoxoxo Wiscwife.

[cathdw1]

Hi , my first oncologist appointment , both my kids and my sister came , because as i said in my last blog , its not easy to take everything in , my sister was the only one that was with it so to speak , so she wrote everything down , In my case , the MDT , which is a board of people that get together beforehand , eg oncologist , surgeon , key workers , to discuss the findings. oncologist then told us what had been discussed and any treatmrnt plans will be talked through with you , You do need someone else with you to take things in .

Idont know if you have read my story or any of the stories , but there quite a few good outcomes amongst them , talk to Ali who is the founder of this site , and a survivor of this cancer , she knows and will answer all your questions , a lively lady and easy to talk to . Iwish you all the best and hope i have been some help to you . This site is amazing and you have come to the right place for support or just to vent your feelings . Love Cath x x x

[Bradbury]

Hi Wiscwife,

I am so sorry to hear your husband is suffering this horrendous cancer,Please try to take it one step at a time , write questions down before you go and see the oncologist, and ask for clarification if you dont understand. Wishing your husband the best of luck , best wishes to you and your family Christine xx

[Hidden]

Hi Wiscwife, my heart goes out too you, keep stronge,our son was being treated for stomack ulsers for 3months,before they sent him for a scan,then ct scan,then biopsy,he had pancreatic cancer 4cm in the ((tail))of his pancreas them chemo for 3months ,dident work for our son sadly,it had gone into his liver,then offered hickman line ,which he dident like the prosieger so turned it down,by the time hed thought and talked to the drs about it, it was too late, sadly we lost our son a month after his 40th birthday, 17th dec 2011,lm leaving this web site now as its so painfull to read people like my son was and not being able to do anything,so ld like to wish each and every one of u all the luck in the world l hope it all works for every one,you have my blessings,keep stronge,its a very good web site,keep up the good work,joan xxxxx

[editfmrt]

My heart aches for both of you. I will try to give some pointers but they are only based on my experience when my husband was diagnosed at end stage - your husband is stage three. Everyone is different and experiences of the health service will differ too depending on where you are, who provides the care and what stage the cancer is.

Are you in the UK?

There are some people that want to fight to try for the best outcome. My reasoning was that why shouldn't my husband get good quality of life for the maximum time possible? There have been so many cancers and other illnesses previously deadly that are now treatable and there had to be a point in time where pioneering work turned into success, so why not for pancreatic cancer? Someone has to be the first.

Like yours, my husband didn't want to talk about it. That was excruciatingly difficult for me and our two daughters. He was a changed person from the very point of diagnosis. He seemed to shut down on all fronts. I can only remember very little conversation coming from him and for me there was so much to talk about. I was very aware that his rights and wishes were paramount but that is very difficult when they don't want to talk. The only thing I could do was keep asking him "did he want us to fight for him". The answer was always "yes". I pressed on also asking him if he wanted to go in peace. He always said he wanted to live.

In hindsight, I believe chemical or hormonal changes played a big part in his psychological changes. I realised he had been changing for many months even before diagnosis.

On that basis, as a family, we researched all the possibilities. That meant having the pain of being scared by the poor prognosis and the attitude of the medical profession. If you can face up to the trauma and harsh reality of the way this cancer is perceived and treated then you will need to research and plan each step of the way.

Keep records and logs from the beginning: details of your research, clinical trials, contact details, records of appointments and the conversations, test results. I would even record the conversations at each appointment using mobile phone technology - it is impossible to take in what they are saying because the anguish is so acute during appointments.

In the meanwhile you need to consider nutrition factors. As much as anything he needs to keep his strength up otherwise a decline can make the difference between being offered one treatment over another. There is appalling and fatal ignorance by non specialists in pancreatic cancer. My husbands "team" if you can call it that, may have been cancer "specialists" in the loosest sense of the word but they had no idea about pancreatic cancer. Pancreatic Cancer is NOT LIKE OTHER CANCERS. They cannot be "fattened up" with high fat junk foods like we were told because they cannot digest in the same way. Look at pancreatic enzyme protocols. Insist on a specialist PC treatment by the right team although you may need to travel outside of your area. We knew they were wrong and we were continuously fobbed off and thwarted by their lack of knowledge.

On a practical note, if finances are an issue, please claim all the allowances due to you. Your GP should and can advise on that. (ADMIN EDIT: OR YOUR LOCAL CANCER CARE) We didn't get advice and costs of travel and hospital parking fees caused much additional stress. It cannot be claimed retrospectively.

To this day, I still know that if we could have found someone to operate, all of us would have accepted the high risks. Some surgeons are more willing to take those risks - you just need to find the right one. Look at and ask about current trials remembering that you can be excluded from many of them if chemotherapy had already started.

There are some amazing experts and pioneers around who wanted and were willing to help - Pofessor Neoptolomus and Professor Dalgliesh amongst others. If they can't help they may know of others in the field so don't be afraid to ask.

I wish you both all the very best xxx.

[Hidden]

I am so sorry to hear of your husband's diagnosis. I lost my dad to it two years ago, I don't know what stage he was, the information wasn't very forthcoming, but he passed away eleven weeks later.

I'm with all the replies here, take someone with you to ALL appointments, take notes and accept all the help offered. Apply for Disabled Living Allowance under the Special Rules, it will be through in a shorter time, then you can apply for a blue badge. Once you have those you can claim back the tax on your car and get free road tax.

Make sure that you have support from outside the family, your husband may open up to someone he doesn't know more than loved ones, he can't hurt or upset someone he doesn't care about can he?

Take care

Jayne xxx

[Wiscwife]

I thank each and every one of you for the support and information that you all are giving us, we are taking one day at a time getting all the information from alot of doctors right now they are doing more testing on my husband and once everything is done and results are back they are going to talk about the plan for my husband.. Thank you all from the bottom of my heart for the SUPPORT YOU HAVE GAVE ME.. THIS IS SUCH A BEAUTIFUL SITE TO BE ON, I WISH ALL OF YOU ALSO THE BEST IN LIFE MAY GOD BLESS YOU ALL. Wiscwife. thank you again.

[Miki8]

Hi, my name is Michelle...I have not been on here much lately, I have been depressed.. My husband also has pancreatic cancer..he is 47..he was diagnosed in Aug 2011...he is still fighting..I know how hard it is for you that he doesnt really talk about it..my husband is the same..that makes it very difficult...I do wish you all the best of luck....unfortunately in my husbands case, they only give him 6 months to a year from now....but he is still fighting...just dont let your husband give up....I am praying he responds better than my husband did...Also..I know how extremely hard this is on you....please take care of yourself as well...-Miki xxxx

[Wildleigh1434 in reply to Miki8]

hi Michelle

just catching up on this site... how is your husband? i hope he is still fighting, and taking the chemo as im reading a lot of in-operables can become operable in time... good luck.

dane

[Jody58 in reply to Miki8]

My husband was diagnosed March 19 of 18. He had 6 months of chemo he has decided to stop treatment due to the fact that it's now growing in the bone and the chemo stopped working. He was originally given 10 months to a yr. The dr has given him 6 months. How do I prepare myself for this.

I wish everyone here luck.

Xoxo jody

[Wiscwife]

Hi Michelle, I am very sorry to hear about your husband also, so young may god watch over the both of you. As we still sit here knowing nothing yet really, he is due to go in on April 5 for another Eus, and biopsy and then on April 6th for a Pet Scan, hopefully we will know more then, I thank you very much for the support all of you are giving us, I have been doing alot of praying for each and everyone of you.. God Bless take care.. Wiscwife xoxoxoxoxo

[Wiscwife]

can anyone tell me my husband had tumor makers blood work done, the results were 180 is that bad or not?

[cathdw1]

Hi , Good luck with all the tests and tell your hubby to fight , a positive attitude is needed , i try to stay positive but not always easy . i may have to have another EUS as the last one was inconclusive , not enough tissue to make an accurate diagnosis of the type of cancer . not sure about the blood markers , all i can say mine was around that and my oncologist said she was opptomistic with it . Take care and all the best to you both .

Michelle hope you have some help with your depression , thought i had'nt seen you on family's in support x x x x Cath

[dottie68]

Hi Wiscwife,my Dad was diagnosed with 3 stage pancreatic adenocarcinoma, he undergone Whipple opperation 10 weeks ago and started chemo (Gemzar ) 3 weeks ago, and you know what? -he is doing really well! ! after such a hard opperation his appetite is back and not side effects after 3 sessions of chemo at all! Please don't give up and believe that God will let your husband enjoy long years, my Dad is 10 years older than your husband and we REALLY BELIEVE h (e will recover! !(he went on holiday with Mum yesterday as two weeks break from chemo )

Wishing you all the best, to me very helpful was and still is pancreaticcancer.org. uk and pancan.org. ,they will answer any of your question.

God bless

Dorota

[cornelious in reply to dottie68]

I hope your dad continues to be strong and healthy like my mom now! we really believe for mom and god help her and everyone as still in shock she had it! we all need to raise awareness and money to help this cruel diagnosis

[Wiscwife]

Thank you all for the wonderful comments, and answers, as of May 31, 2012 my husband had another Eus, bx and the results came back they said they were sending them to the Mayo clinic in Madison Wi, 7 days went by, and on Tues this week we got a phone call staying that it was Cancer of the pancreas, we are going to see a chemo doctor on Monday and Radiation doctor on weds of next week, my husband still does not want to talk about this, I will keep you all informed about what they say.. God Bless each and everyone of you. Thank you, Wiscwife.

[lonzo]

Amazing as it might seem, I was diagnosed almost the same exact time with 3mm tumor in the pancreas (no surgery due to location)...

I've doing chemo for over 2 months and usually have to skip the next week because of low blood counts...I had a Cat Scan 19June and it showed the tumor, as well as the other areas trying to form into cancer, was shrinking...that's good news...my main side effect has been just really being tired and nauseous more lately...I'm suppose to go in again thursday for another treatment...they wouldn't last week due to low blood readings...

Glad to hear the update for sure...Hang in there and keep smiling and laughing (great medicine)...I'll check in after Thursday...Take care with much love, Lonnie

p.s.--looking for other "good health" suppliments and/or retreats...I sincerely believe our diet is most critical, not just eating as much of whatever (that's better than not)..laterlon

[Wiscwife in reply to lonzo]

Hi Lonzo, I am sorry to hear that your going though this also, I am saying prayers for you and everyone else, at this moment, My husband had his surgery and is home after 9 days in the hospital and now home lastnight, with have the pancreas out and being a total diabetic now is very hard but I know things will get easier for us, and getting his glocose under control its hard, I hope your test today come back ok lonnie in 4 weeks he will be going thought chemo and radiation treatments to be safe there is no cancer cells around inside, hope and pray there is none. God Bless you Lonnie and I hope you do well ... xoxoxox Wiscwife.

[cornelious]

Hi my mom had the whipped op two weeks ago today, nurse called today they had results of biopsy and tumour was dead due to radio therapy and chemo! So don't underestimate the treatment and also if the operation isn't possible it doesn't mean the end xxxxxxxxx god bless all xxxxxxxxxxxxxxxxxd

[Wildleigh1434 in reply to cornelious]

hi

what great news that the tumour was zappped by the chemo, before the operation, it gives hope to all out there.... I had a whipple 11 months ago, finished chemo two months ago and im now starting to feel human and looking forward ot the future, with a clean bill of health.

[cornelious in reply to Wildleigh1434]

I no god bless to Us all!!!!!!!!!!!!!

[jawwalker01]

prognosis for chronic pancreatitas with bile acid

[poppystorey]

You sound a very strong loving lady .my prayers go to you both .I am just waiting for confirmation of blood tests get to know tomorrow I am 75 year old lady .my world as been turned inside out I have such a wonderful husband Do take care

Love poppey storey