Help us please.

[EmmaR]

My husband was diagnosed a week today cancer in the body and tail spots on liver and lung nodules some sort of fluid in stomach he is waiting for a ultra sound liver biopsy so they can see if he can have chemo but at the moment he is so weak and cannot eat much and everything thing is an effort shaving today I had to get a chair for him ,I don't think I asked his consultant enough questions but I think from what I have read it's at a late stage he keeps saying he won't make the chemo he was a fit 70 year old up to late June playing golf walking on weekends now we feel in a very dark place I think you all know what we are going through on this forum and that someone can help me get to grips with this thank you

EmmaR

[J_T]

Hi Emma and welcome to the forum. So sorry to hear of your husband's diagnosis.

It's a familiar story sadly. Fit as, one minute then hit with this devastating news.

I hope you can get some answers when you next have an appointment. If your husband is deemed fit enough for treatment he can feel well again. My husband was quite ill following a terrible bout of jaundice but he had treatment and was able to withstand a quite aggressive chemo regime.

Good luck.

Julia

[Cathy]

Hi Emma

Welcome to the forum but so sorry to hear about your hubby (what's his name?).

My partner also was diagnosed, last December, with cancer in the body and tail of his pancreas (he was 56 then) and with liver and abdomen mets. He has had chemo since (8 cycles of folfironox) which stabalised the disease and has even reduced the mets. He had his ups and downs with the treatment but by and large tollerated it pretty well and an almost immediate effect for him was that he no longer needed pain killers (still doesn't).

It maybe that folfironox might be too strong for your hubby if he is feeling weak but if he is deemed strong enough for some kind of chemo, it could help him feel better.

If you haven't already, you ought to be referred to Macmillans (or something similar) as they can really help with symptoms of the disease and hopefully make your hubby feel a bit better, and give you some support as well of course so you don't feel you are fighting this on your own. Your GP can do this but I also believe you can refer yourself. Try giving your local team a ring? You can also ring or email the nurses on this site support@pancreaticcancer.org.uk who are always full of very good advice.

Best of luck

Cathy xx

[Birchen]

Hi Emma

So very sorry to hear of your husbands illness. My husband was diagnosed in June this year and has now had 3 x 3 courses of gemcitabine and capecitabine. His latest scan has shown that the tumour in the tail of the pancreas has decreased and most of the liver tumours have also got smaller otherthan 2 which have increased slightly in size. We are still trying to get our heads round this terrible illness and still cannot understand how you can feel so well and yet be so ill. Hope that your husband will be able to commence chemo. Good luck

Kind regards Lyn x

[EmmaR]

Thank you all you have given me some glimmer of hope with your stories ,since posting GP phoned and decided after talking to Macmillian nurse to give hubby steroids to help with appetite then the hospital phoned and they are doing the biopsy tomorrow morning ! So hopefully chemo next step , has anyone taken these steroids Dexamethasone ? The side effects makes horrendous reading but in this situation I think hubby will try anything .

EmmaR

[J_T]

Hi Emma, yes Ray took dexamethasone but only whilst on Folfirinox. He had no side effects from the tablets.

Looks like things are getting sorted for your husband. Good luck.

Julia

[nikkis]

Hi Emma,

My husband has had short courses of steroids and been fine, and yes they have side effects but that is more if they are used very long term. Hopefully they will give him an appetite and make him feel better, but when he stops taking them don't be surprised if he loses some of that, as it is an artificial high. Hopefully it will be enough to get him to the next stage of treatment.

It's a very dark place to be in, and so hard to keep going. Sounds like your GP, hospital and Macmillan Nurse are on the ball though, so that's some good support you have there,

Hope the biopsy goes ok,

Nikki

[Cathy]

Hi Emma

Just to mirror the other comments, yes, there are side effects but they do seem to give you a lift and a great appetite. Maybe what your husband needs?

For my partner he had a dip after he came off them (like Julia it was during his treatment). The issue is they can also heighten blood sugar levels so Jonathan had to have insulin for a while. They also removed some muscle mass in his arms and legs. None of these side effects continued after he stopped taking them. Overall, in the short term the benefits seemed to far outweigh the downsides.

Cathy xx

[Jwilson]

Hi Emma. So sorry to hear of your husband diagnosis, that, for me, was the darkest time, just hearing those words. Somehow you get through that and live one day at a time. My husband was diagnosed in April. My advice is take all the help you can get and just ask ask ask! Something I didn't know til this week was that PC causes your blood to be sticky and form clots easily! Bill was very very weak, breathless and totally devoid of energy this week. The reason was two clots had formed in his chest. He already has one in his leg and part of it may have travelled. If this is how your husband is feeling maybe get the doc to listen to his chest or get it scanned. You get claxane injections to thin the blood as treatment.

Maybe I am just reading too much into what you said because of Bills latest problem. He takes those steroids and I haven't noticed side effects.

If your hubby can't eat much there are loads of high calorie shakes and things that can be prescribed to give him energy. Just ask for them! Make sure he drinks lots of fluids......Bill didnt. Result low blood pressure due to dehydration and two days on a fluid drip. Low BP makes you all muddled and disorientated.

Get the kettle on Emma. Hope things improve for you both and there is always someone to chat to on here. Great people!

June W

[Bee]

Hi Emma,

Welcome and as everyone as said , sorry to hear of your husbands diagnosis. I too am walking your path, and yes it is scary and unknown, one step at a time works for us, and this forum is fantastic. There is no logic or reason to how you will be feeling but once you have a plan it helps!

Take care and keep posting

Bee xx

[EmmaR]

Hello all,

Biopsy done hubby very very tired had to use a wheel chair to get through hospital to daycare dept really broke my heart to see him in it ,when weighed was shocked to hear he had lost two stone have only eaten a qtr of a weetabix today that they gave him in hospital during the 4 hrs we had to wait after the biopsy , got everything at home to tempt him to eat fortisip from doc but he as not wanted them last few days he says everything just sitting at the top of tummy , so I am wondering once he takes the steroids even if they give him an appetite will he still have that full feeling oh what a mess ,very despondent tonight he is sleeping now so i'am on my ipad for a little respite from dishing out pills never had so many in my tablet box! I feel so helpless I could scream my head off which is so not me , and now it's the waiting game for results to get to oncologist and a date for our first meeting with her I can't begin to think what the outcome will be there is no cure I know that and our lives will never be the same again but why him why this terrible disease I know that's not the way to think when there are so many young people suffering cancer's so I just pray I have the strength along with my brilliant children and grandchildren to see him through .

Thanks for reading and listen to my feeling 's when so many of you are in the same situation .

EmmaR

[InfoForMum]

So, so sorry you're going through this Emma. I don't think you can understate the unfairness of this nasty, sneaking, vicious disease. My Mum has just started chemo and she is one of the fortunate ones who got symptoms that took her to the doctor and got a referral before this had spread, but that might have changed (we've got an MRI result on monday).

You must come on here and vent whenever you need to. This diagnostic, vertical learning curve is very very rough. The advice and support I got on here through that was invaluable. Also, remember you can call the support line number here if you want more immediate answers about this disease, symptoms, likely treatment options or just to talk things through in general. There are nursing staff on the phone with a wealth of very specific experience.

I'm hoping your hospital team come through for you when the biopsy comes back. Good luck and hugs for you both and do keep us posted

Sarah

X

[Cathy]

Hi Emma

Can't really add anything to what Sarah has written but just to let you know we are with you and please let us know how you get on and with the onc and biopsy results.

Cathy xxx

[nikkis]

Hi Emma,

Know exactly how you feel about wanting to scream, and how unbearable it is to think your life will never be the same.

It has been an issue for my husband that while steroids have given him an appetite that full feeling is still there. Key is probably to eat small amounts of what he fancies, but hopefully they will make him feel better,

Nikki

[washingtonmike]

Hi Emma: I'm not a caregiver but a single 72-year old guy who was fortunate enough to have a small family unit (niece and her family) willing to take me in when I was diagnosed in May. When people ask me about my experience(s) I tell them it was sort of like being yanked up by the hair on your head and thrust into a parallel universe of some sort where you have no idea what the rules are nor how to proceed from this point forward.

The medical personnel, God bless them all, aren't able to help us, really, through the intricacies of trying to cope with this crazy disease and it's really tough on both the caregiver and the patient. That's why these forums are so critically important to both parties; please keep coming back.

On the appetite situation, I was told, and have heard other people told, to eat whatever tastes good and stays down; just get it down and enjoy the sins of eating whatever you want whenever you want. I was big on ice cream sodas for a while and the local ice cream supply took a dive during that week as I recall . It put some pounds back on me though and that was the intent.

My best regards to you and yours. Cheers, Mike

[Jwilson]

Emma. Good morning! I hope you are getting to grips with all that has happened to you and your hubby. I just wanted to say.........croissants! Bill can eat warm croissants dunked in raspberry jam even on the worst of days when he can eat nothing else, oh and porridge with honey in it always slips down well. Hardly masterchef but hey you would try anything to get food into these men! Chicken pie as well and I have started making these myself, but I buy frozen pastry! The desire to eat just seems to disappear doesn't it and Bill says things taste wrong. So there it is croissants, porridge and chicken pie! And.....don't panic

Love June

[EmmaR]

Thank you all you are so helpful and encouraging June hubby as been managing porridge with honey small banana stewed apples and custard ,not altogether but he still leaves a little says it's to much he as changed to whole milk haven't had that for years and as been drinking a small glass ,but he is still very weak but says that he must try to eat ,family been back and for today he try's to cheer up for the grand kids but conversation is taking its tole on him but they no when to leave ,this morning was a beautiful morning and a normal Sunday for us would have been a six mile walk in our local forest I looked out and thought if we could only go one more time then the tears came hubby was still in bed so I had time to put on the smiley face so so hard to do .

Kind Regards to you all and your loved ones x

[KATB]

Hi Emma

We had the same this morning, looking out at the stunning weather and the hills beyond and thinking how normally on day like this we'd be out walking up a mountain with dad and finishing off with a pub lunch

It's a tough disease, it really is.

Chin up xxx

[PCUK Nurse Dianne]

Hi Emma,

I am sorry to hear of your husband's recent diagnosis, such a difficult time for you both at present. I am sure you will find the forum a very supportive place, with some lovely family members and all very supportive to you at this time.

Please feel free to contact us on the support line (020 35357099 or support@pancreaticcancer.org.uk) as we may be able to help you with some further support and guidance that you may find helpful.

Kind regards,

Dianne

Support Team

[liz99]

Hi Emma,

I am sorry to hear of your husbands diagnosis, my husband was diagnosed in April this year and I remember how awful and confusing it was in those first few weeks.

I found it helpful to write questions down to take to the oncology appointments as I could never remember anything when we got to the appointments otherwise.

Others have given good advise regarding apetite, and I would echo the eat whatever they feel like - ice cream is my husbands favourite - and mashed potato (not together!!)

Another thing worth considering is an anti-depressant, as having this diagnosis can have a huge impact on mood and can result in depression. My husband was started on a low dose anti-depressant (after my insisting on this - I am a mental health nurse) and this did lift his mood slightly and his appetite.

Not saying this is the same for your husband - but worth a discussion.

Take care and do use this forum - I have often read entries which has helped me enormously through the darker days. (have not felt up to contributing until recently)

Liz

[EmmaR]

Hello all things seem a little brighter hubby started mst's twice a day and is taking the 3 steroids in the morning he is eating a bit more and not going to bed in the day !! We both slept better last night I had been so tired !! Didn't know if I was coming or going still waiting biopsy results and appointment with onc I think he was so tired taken all the co/ codemols the mst's seem much better at controlling the pain I know he is still unwell but this little improvement is better than nothing the doc came to see us and sorted out the dose for the mst's and told him the steroids were not only for appetite and would make him feel a little better I think one of you good people on this forum had also said that . I will keep in touch .

EmmaR

[J_T]

Hi Emma, that is good news, all the little victories count! Glad to hear you are both getting some much needed sleep, we all know about that!

Keep us informed

Julia

[EmmaR]

Hello all,

Had biopsy result yesterday confirmed the cancer the consultant had already sent off the referral to the onc so should have an appointment soon ! Both consultant and specialist nurse thought he was ok for chemo but onc has the final say so fingers crossed he is to start creons soon oh dear more tablets have to get a bigger box ! Joking aside he is still very tired and looks so thin but he is trying hard to eat as much as he can thanks again for all your support.

Love to all Emma x

[Slewis7313]

Hi Emma, just a quck not to remind you (if you don't already know) that there is a Maggies Centre at Singleton where you can drop in at any time. I cannot stress enough what a help they have been to the family especially in the early days. They will make you very welcome! If you are seeing the Oncologist in Singleton, you will find Maggies next to the chemo centre. They will tell you how to get there. I'm off to Cyprus today for a week on business, but am around the week after if you would like to meet at Maggies (or somewher else) for a chat

Take care

Steve

[EmmaR]

Dear Steve how kind of you for the offer of a chat and the info , but my hubby will be having his chemo if suitable at X at X hope it's ok to mention hospital names , have a good time in hopefully sunny Cyprus even if it is business will keep you posted on OH progress and hope to hear good news from you regarding your treatment in Germany you and your family are in my thoughts be positive !

Kind Regards Emma x