Husband just diagnosed at 36

[Annie14]

I have been looking at the forum for the past week since my husband was diagnosed. I have found the forum honest but has given me hope too. It all started prior to our wedding in July of this year when he started to have a dodgy tummy and back pain. On honeymoon things started to get worse obviously brought on by over indulgence but on return the doctor suggested it was indigestion. Gaviscon was suggested obviously didn't help. Three more trips to the doctor and they suggested he has torn his stomach lining. He knew there was something else wrong so asked to be referred to Bupa as he has a work policy. Again, it took a few different tests but eventually adenocarcinoma tumour was confirmed. It is inoperable at the moment.

He feels very well apart from diarrhoea and has been at work everyday. He is meeting his consultant at Bushy Spire Hospital on Wednesday to discuss chemo options going forward and will start ASAP. The main help and advice we were hoping for was if anyone has been able to help with the tirenesss / dehydration after diarrhoea. He was taking diarolyte but is concerned about the glucose in it!

Also, we have a four year old daughter so any advice on how to deal with this disease and a young child would be amazing.

Thanks you. Infant...any advice is helpful. Iam only 27 so it isn't something I thought I would have to deal with for another few decades atleast.

[J_T]

Hi Annie, welcome. Sorry your husband (and you) have to deal with this diagnosis at such a young age.

Plenty advice on this forum from patients and carers alike and also Dianne and Jeni, the two specialist nurses you can ring or email during the week.

I'm sorry but I have no advice regarding the fatigue. My husband was tired before being diagnosed and never really regained any stamina BUT there are plenty of others who carried on working and went to the gym and all sorts, everyone is so different.

Good luck with your meetings. Don't be afraid to ask plenty of questions.

Best wishes

Julia x

[InfoForMum]

Hi there Annie, I'm also so sad for you both. What a horrid googlie to have chucked into all of your lives!

On the practical front, has he asked about pancreatic enzyme replacements and had his bilirubin levels checked in his liver related blood work? Tumours often restrict flow of pancreatic enzymes that are essential to aid digestion, in particular breaking down fats and enabling fat soluble vitamins like vitamin D get properly processed. Symptoms specific to that include fatty, floating, smelly and often loose bowel movements. That problem with absorption of fats and other nutrients/vitamins can also have a knock on effect of weight loss and tiredness. The pancreatic enzyme replacements have various brand names, but CREON is the one most often talked about. I recommend talking to your docs about getting that. It has no known toxic dose and if taken with meals might help a lot. Please don't take my word for it. Give the nurses a ring on the support line on the home page. They are a mine of information about this and everything else to do with this hard disease.

I mention bilirubin as it's a good indicator of whether bile flow is working properly. Bilirubin is a bi-product of usual liver activity, but can back up in your system if the main bile duct starting from the liver and going past the bottom of the pancreas is constricted or blocked (something tumours in the head of the pancreas can quite often do). The symptoms usually include dark wee plus pale stools. It can also cause tummy trouble as bile is another ingredient needed in the digestive process. Another obvious symptom of that is Jaundice, but ideal if this can be checked before someone goes yellow and starts itching. The solution is usually to fit a tube called a stent into the bile duct to keep it open, get rid of any backed up bile and keep it flowing.

Those aren't the only possible causes and I'm only talking about my Mum's experience without a medical background, so as I said before, do have a chat with our brilliant ladies on that support number.

As far as telling kids is concerned I can only share what I've done. I have a 4 year old and a 7 year old and have gently introduced info about their beloved Grandma's PC. I said that she was ill with nasty tummy trouble and it was the kind of tummy trouble that tablets and bottles of her pink medicine couldn't fix, so she was having to have lots of rest and go to see the cleverest doctors to have special extra strong medicine (chemo). The trouble is that the special medicine can make her very tired and even maybe make her go bald! The last part caused much hilarity and led to little one asking if grandma was bald yet every time she called!

Since that early chat I've just talked about other stuff happening in language she'll understand, but I've never talked about what might come down the line as for us and for her that's to be dealt with if and when it happens. I have however avoided saying grandma will definitely get better. I always say we hope she will or it would be great if the latest medicine works. She's been completely at ease outwardly with the changing relationship and news about her gran, but I did brief her nursery and recently her new school and asked them to flag to me if she showed any behaviour changes. She even got to sit in while I disconnected grans chemo pump and flushed her central IV line. Something she proclaimed "cool".

I've posted in the same extreme length about my mum's PC journey on 2 threads. 1 starting the day before her initial CT review that led to diagnosis and that links to the 2nd one started the day before her first chemo. If you are intested I've put the link to that first one below.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=9&t=1137

Do remember to take care of yourself as well m'dear. This initial post diagnosis period with the vertical learning curve can be really hard on both of you and do use us whenever you need to.

Sarah

X

[cestrian]

Hi Annie

I've often thought that this is one forum no one actually wants to be welcomed onto but we are where we are so welcome and I'm sure all of us are shocked and saddened that you, your hubby and daughter have been dragged into this at such young ages. Hopefully he has been diagnosed in time to be operable and at his age will be fit enough to bear up to the rigours of any treatment he needs.

Jenni and Dianne may well be able to advise on rehydration - funnily I am just looking into the effects of glucose so have had to go cold turkey on my addiction to Lucozade!! I'm sure there are sugar free/reduced sugar alternatives you can obtain - maybe a chat with a dietician. You don't mention any weight loss but will often find that putting the weight back on is prioritised over a possibly "healthier diet".

May your God bless you and your family

Love and Peace

Mike

[marie souter]

Hi Annie,

Firstly welcome to the forum you will find it an invaluable tool to help you through the times ahead, the people on here have a wealth of experience in this area and the specialist nurses/moderators are amazingly helpful (please use them and us to vent anytime you like)..

Secondly, my mom was also inoperable by the time they found the pancreatic cancer it was stage 4 and had metastesised ... she refused chemo (I truly wished she had tried it). Your lovely husband is far too young and this is so unfair for him you and your little ones to have to deal with at a time in your lives when you should be in the flow of enjoying bringing up your young children and looking forward to what the future brings..life has thrown one of those horrendous curve-balls at you and this will test your strength (which believe it or not you will have even when you feel you don;t have it anymore, you will find it, believe me I know.)

My mom had loose fat pale stools followed by constipation (neverending cycle I'm afraid)..well for her it was at least. The CREON is a MUST u can't OD on it and will find you will have to tweak a little to get the right balance but his weight will settle once he has the right balance ... Once again as Sarah has said (am not from a medical background, I was my moms sole carer from the initial diagnosis til she passed and she spent 99.9% of her time at home and only went in hospital very briefly at the beginning for her diagnosis as she was jaundiced and 5 wks before she died for a week to control symptoms). The CREON will also help a lot with his tummy as digesting fatty foods is the problem he will have and CREON will help his body be able to replace the lost enzymes to be able to break down the fat.

I think it depends on where the tumor is representing itself on your husband as to how he will produce symptoms my moms was at the head of the pancreas and caused a lot of problems with her digestive tract including as sarah mentioned the bile duct/bilumin levels and she inevitably had the jaundice and the itch ... she was presribed Questran sachets for the itch/bilumen levels and she took this 3 x daily to keep the levels down whilst her stent was put in place via undoscopy (they try to take biopsys at the same time if this is the case) The Questran really helped with the unbearable itch until the bilumin levels returned to normal. Questran sachets also come in sugar free btw. Ensure if you go down that road that it is the sugar free ones that are prescribed as I had constant issues with them giving me full sugar. There will be sugar free supplements for dehydration just ask the doctor to prescribe them for you.

I see that you have mentioned a worry about glucose so I am guessing that your husband has the horrible side effect of onset of Diabetes .. my moms very first side effect too.

The tiredness stems from the cancer itself as well as Diabetes if he has it...moms was always there she was always tired and she had little staying power/stamina throughout. However I have seen other people like the lovely Mike who has posted here who seems to cut through every obstacle that is thrown at him. I have seen people with zero side effects from chemo whether it is palliative or at the stage where it follows the whipple procedure, I have heard from nurses how people go for chemo in their lunch hour and then back to work they go..of course everyone is different. Medicines will also add to your husbands tiredness and hopefully he is one of the lucky ones who will get past it. For the dehydration if he does need a bag for this they can also make sure they don't give him bags with glucose (a mistake that almost happened to my mom) learn to stay on the ball and double check everything that has been prescribed or anything that is being given at hospital. If you think of a question in the middle of the night whatever it is no matter how small, write it down EVERY question no matter how insignificant you think it is .. may well matter hugely and if you think it then it definetley matters to you, so its always worth asking.

Thank god for BUPA tho as your husband could still be suffering for a while yet, my mom went back and forth to her GP for 2 years with the same symptoms..tummy and back pain and was misdiagnosed for a long time.

My mom had no young children herself as although she was 65 she was at the stage where she had 9 great grandchildren (she was a young mom)...but my grandchildren are very young...and I jsut told them pretty much the same that nanny was very poorly and was going to be tired and sometimes not very well ... and when it was clear she was passing within a couple of hrs my son told them that the angels were waiting to take nanny to heaven .. then when she passed he was told nanny was now an angel herself..

I do not envy the journey you guys have ahead of you .. push your GP for your macmillan nurse to contact you asap as they are amazing, you will be asigned one specifically who you will get to know well...help is there Annie, you have young children and your husband accept all the help that is offered to you, you will have an amazing district nurse team and out of hours team who you can call as and when you need them, know that that help is going to be there for you and you don't have to be alone in this...

You are far too young to be having to deal with this ... far too young....

Vent whenever you need to on here its a good place to do it...

my whole experience is pretty much summed up from start to finish on this thread...

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1057

things I had to face ... medication issues I had etc etc ... My mom refused the help of carers so I did it all on my own pretty much but know that the care is there for you should you need it and your husband wants to avoid hospital at a (hopefully much much later stage).

I don;t know what else to say, except good luck and will be thinking of you, please let us know how you are all getting along...

Love and hugz

Marie

xx

[nikkis]

Hi Annie,

Looks like you have had some great advice here, and I haven't really anything to add but just wanted to say how sorry I am that your family are going through this, and welcome. It is all so much to take In and deal with. Hope your meeting goes well on Wednesday,

Nikki

[Sharon m]

Hi Annie,

It must be so hard I read your post as it was put on at about the same time as mine, I also have a young child aged five she is staying with my ex at the minute while I recover enough from surgery to have her back. She has been very strong for a little one and I have just told her I have a poorly tummy,and I'm hoping she stays happy but i do worry about how it may effect her in the future.

Hopefully your husband will get the help to sort out his symptoms soon I felt so much better after the stent was fitted and taking Creon has helped to.

I send you and your husband my best wishes.

Sharon

[Annie14]

Thank you all for your incredibly kind words and advice. I am very lucky to have found this forum and all of you! My husband is generally very well and after losing half a stone in the autumn he has now stabilised and even put a few pounds back on. His appetite is also still very good. The doctors are stunned at how well he is and this added to the delay in diagnosis. Thank you all for the advice on Creon and I will contact the nurses about a hydration options without glucose. We will know his chemotherapy options tomorrow so I will no doubt be begging you for more advice then.

I spoke to my daughters teachers today and she was brilliant. She said that in twenty years of teaching she can't imagine any child who would be better placed to cope.

Sharon - I hope you are able to recover very soon so you can have your little girl at home with you. All the best with your treatment and I hope you are able to have a nice Christmas.

[Annie14]

Sorry another question.......

I know it is impossible to tell how well my husband will cope with chemotherapy but I was wondering from your own experience how independent you think he might be. Iam currently half way through my teacher training year and have now broken for Xmas. However, iam still undecided if I can continue after Christmas. Our daughter is only in preschool so just attends from 9am until midday everyday and we don't have a grandparents close enough to help daily. In your experience do you think iam being naive to carry on with the course? Or should I defer for a year and focus on the disease for now. It is my natural reaction to leave the course and focus on my husband, my daughter and making sure all our housework etc is done so I can make him nice meals and be with him at all his chemo but he has a very strong work ethic and wants me to continue and for him to go to work as much as he can during chemo.

[nikkis]

So glad to hear your daughters teacher is supportive, that makes such a difference, and how proud must you be of you little girl for her to say that! She is obviously a credit to you both,

Nikki

[nikkis]

Just read your other post Annie. Everyone is so different with their chemo, so it is hard to say how your husband will cope. My husband is having Folfirinox post surgery, which is especially tough, and I wouldn't want to leave him for too long, but others here have continued with work and their normal activities whilst on the same regime. I was on a course when we found out Paul was going to have surgery as cancer was suspected, and I stopped, because I found it too difficult sitting in a classroom with time to think, and would have struggled to concentrate. The emotional side is as much of an issue as the physical side. Can you perhaps make a decision later on, once the chemo has started? The oncologist should be able to give you some advice tomorrow as well. Some people even feel better once their chemo has started, and the cancer becomes less active,

Take care,

Nikki

[InfoForMum]

Hi Annie,

My Mum tolerated her Folfirinox really well. She's 68, but fit and active with no cancer related pain and minimal weight loss. 1st cycle was a bit rough, but things evened out later. I asked if she would have worked through if she'd still had an office job and she reckoned she would have done, but probably with days off on day 5 of earlier cycles and maybe days 4-6 of later ones when tiredness really bites.

More generally for info on chemo and possible side effects, my threads have lots on FOLFIRINOX. I put the link to the first one at the end of my monster post above. Also maybe try a search for "chemotherapy" or a specific chemotherapy name using the search function for the forum. Should chuck up posts with relevant titles and contents Of course you'll also get lots of specific responses here when the plan for your man is clearer.

Take care

Sarah

[J_T]

Annie, that's a very personal thing.

One argument says your course will give your breathing space from the undoubted tough times ahead, the other says your husband may rely on you a lot so might be best for you to put the course on hold. As others have said it will depend, I suspect, very much on your husbands's attitude and how he copes with his treatment.

Tough one.

Julia x

[AnneK]

Hi Annie

So, so sorry to hear of your husband's diagnosis. I am 48 and was diagnosed with PC in July and have had 7 cycles of Folfox so far - if this is the chemo your husband has (most likely as he is young and fit) then I would be more than happy to share my experience with you via email or on the phone if it helps.

As others have said, for me the tiredness kicks in around day 4/5 and stays for about 3 or 4 days. I do feel pretty rough and I haven't worked since I was diagnosed as I knew I couldn't do the travelling and long hours that I used to.

This forum is definitely a source of great guidance and support. For me, the Macmillan nurses have been fantastic too so I hope you get some good advice from them too as they can really help with management of the symptoms.

Thinking of you and your family

Anne

[marie souter]

Hi Annie,

I never had to deal with the Chemo option..however, my first thought woulda bin 'naturally' to quit everything to be by my moms side (if I was doing what you are doing), however, thats a natural 'panic/knee-jerk reaction' ... I have seen instances where people do great and people don't. I really think it's a wait and see thing, he really might be one of the lucky ones who sails through with no side effects whatsoever...

Sharon ... my heart truly goes out to you too

hugz

marie

xx

[Annie14]

Hello everyone,

Thank you for your kind words and advice. It really helped us when we met the oncology team last night. My husband will be starting folfirnox next week for 3months. He has also been given Creon to help with his dodgy tummy and told to eat, eat, eat!!! I lost track of how many mince pies and tubs of ice cream he had last night but I guess having an appetite is a good thing.

The consultant was very honest with us but my husband likes straight talking people so I think they will get along well. I might find it a bit more difficult though. I prefer fluffy talk but I guess with pancreatic cancer there isn't much point in being fluffy.

It's my daughters 4th birthday this weekend so we are looking forward to that before the treatment starts.

Thank you all again!

[nikkis]

Hi Annie,

Glad to hear you husband has a good appetite! Hope you can have a good weekend, 4th birthdays are very special,

Nikki

[InfoForMum]

I second that Annie, I hope you have fun in spite of the exhaustion a party usually causes (unless you pay for the local soft play area to take things off your hands - guilty of that!) and I'm sure you'll love seeing wee one going nuts with her friends. It's fab.

Otherwise take good care and take it easy.

Sarah

XX

[marie souter]

Hope your lil one has a lovely birthday and ur hubby keeps that appetite going

Love n hugs

Marie

Xx

[Annie14]

Hi everyone,

Thank you for kind messages. Our daughter had a brilliant birthday and was exhausted after it. She is now all set for Christmas.

My husband had his first folfirinox treatment yesterday which went well. He is a little nauseous but the anti sickness drugs are taking edge off it and he is very sensitive to cold food / drink. Other than that he is pleased with how he feels. He got up at 8am had breakfast and walked into town to get some groceries and has now gone to pick my parents up from airport for Christmas. Long may it continue but I'm aware that new issues may arise everyday.

The nurses and doctors all couldn't believe how young he was and asked lots of questions about his symptoms etc. I'm pleased they seemed so keen to learn. They also seemed surprised but delighted that he had managed to put on 2pounds.

Overall, I'm glad we have started on the long road and determined to get through it fighting.

[J_T]

All sounding good Annie.

A word of caution though, and not to put a downer on you, but forewarned is forearmed. The full effects of Folfirinox can take a few days to manifest and your husband may start to feel quite fatigued around day 5. He may not, but just thought you should be prepared.

Best wishes

Julia

[belgrade]

Hello Annie,

I'm so glad things are going well for your husband and long may it continue. Sending you warmest good wishes for Christmas.

Hi Julia,

I know this is a different thread, but in response to you asking if I was ok, I have to say I've found things very difficult over the last few weeks with all the Christmas hype. How about you?

Hilary

[marie souter]

Hi Annie

So pleased ur hubby picked up enough to have his treatment x Julia is right though best thing is take each day as it comes and deal with fresh challenges as they arise. He sounds like a strong man he's gonna learn his limitations and how far he can push himself. He sounds like his support network is solid xx b strong honey glad he's eating as well

Love n hugs

Marie

Xx

[Annie14]

Hello everyone. I hope you all had a nice Christmas and New Year. I did but glad to get back into a routine now.

Just wanted to let you all know how Jim is getting on. He has had two cycles of folfirinox now and his side effects seem to have settled into a routine now. Immediately after the treatment he gets cold sensitivity in his mouth and the sensation of locked jaw when he eats. It only lasts two days and get progressively better over those. The following day he gets hiccups and on day 5/6 that's generally when the diarrhoea starts. It is normally just one bad day of it and then he has a week before the next cycle feeling normal (well, a little tired) He has been able to spend a couple of hours at work this week and has more golf planned than Tiger Woods which is a good sign. He has maintained his weight but is having to put in so much effort to do so. At least 3000 / 3500 calories everyday and still no gain. Just glad he isn't losing any! Talking about losing things.....he has noticed that he doesn't need to shave every day anymore. He normally had to shave twice a day his hair grows so quickly so the chemo is obviously starting to effect it. Generally we are pretty happy with the quality of life he has on chemo. For the first week we need to plan to be bear a toilet at all times but the second week is pretty much normal life!

[J_T]

Hi Annie, pleased to hear Jim is doing well. Hiccups though, that's a new one!

Is Jim taking Creon? This should help with food absorption and maintaining/gaining weight.

Best wishes

Julia x