My husband massive pleural enfussion

[Birchen]

We returned from a holiday to Spain and my husband went to see our GP as he had been having a pain in his left side. He was immediately sent for an x-ray on Friday at 6pm and on Monday at 6 the evening he had a chest drain inserted. On the Wednesday he was told whilst on his own that he had pancreatic cancer with multiple metastases in both lobes of the liver and a malignant pleural effusion. He was told he had this in an open ward with no privacy and went into total shock. He is a very fit 64 year old (only looks 54) and when we saw our oncologist he could not believe how well he looked but stressed that my husband was an extremely ill man. He was diagnosed in the middle of June and has started both gemcitabine and capecitabine. He seems to be doing very well and his CA199 has gone down from 4123 to 2608. He has never been ill and in hospital prior to this and we are still trying to come to terms with this dreadful illness. Cannot understand where we go from here and how his illness to progress with regard to pain etc., As his tumour is in the tail of the pancreas he did not go yellow and we wonder whether this will happen in future. I am so glad that I have found this discussion forum as feel unable to talk to him at the moment as I don't want to upset him. Any advice would be a benefit.

[J_T]

Hi Birchen, so sorry to hear of your husband's diagnosis and in particular the way in which it was delivered, only too common I'm afraid. You have to wonder at the thoughtlessness of people sometimes and particularly those in the medical profession.

I think with your husband's cancer being in the tail it is unlikely he will get jaundiced but I am no expert obviously! There are others here with experience of it in the tail so hopefully you will get some advice from them.

If you haven't done so already I would suggest you call or email Jeni or Dianne on this site who have a wealth of knowledge, experience and advice to impart. They are brilliant.

Julia x

[Birchen]

thank you for your reply Julia will email either Jeni or Diane. Really just taking the first steps to try and understand what happens next and it is always helpful to have discussions with other people who are going through the same.

kind regards Lyn x

[Bee]

Hi Lyn,

Welcome to the forum, I find it so helpful and great support is here always, hopefully you will find the same.

I can only echo what Julia said, the way your husband was told is disgraceful and inexcusable!

It does sound like things have been a little more positive since. My husband has the same chemo regime and he tolerated it really well. Fingers crossed you have the same experience. It sounds like you are going to email the nurses who I am sure will be able to answer your questions. Just so you know they are not available at the weekends.

Wishing you a restful weekend,

Bee x

[Slewis7313]

Hi Lyn, really sorry to hear about the diagnosis and the awful way they broke the news to you husband. I was diagnosed in December 2012 and have undergone chemo / radiotherapy. The tumour has shrunk, but remains inoperable due to involvement with arteries. My tumour is in the lower part of the head and as such has not interfered with the bile duct, which means I have not had any jaundice or the need to insert a stent (helps to keep the bile duct free). As mentioned by my fellow forum members, I believe it is therefore unlikely your husband will deveop jaundice, though Jeni or Di will give a more informed answer. They will however not be back online until Monday morning.

You will find a wealth of information on this forum and support from people who know exactly what you are going through.

Take care both

Steve

[InfoForMum]

Hi Lynne,

I also wanted to dive in and assure you that you are amongst supportive, well informed friends. I have only been posting as the main carer for my Mum for just under a month and have found this a fantastic site for comfort, information and an outlet when the unfairness just makes you need to have a rant.

I wish all the best to you and your husband with this first steep, tiring and painful learning curve. Just remember you don't have to go through it alone.

Sarah

[Cathy]

Hi Lyn

Welcome to the forum - as I am sure you have already found, the support from the forum family is great and the nurses will provide excellent comprehensive advice. I certainly don't know how I'd have managed without the support from friends here and the nurses.

Your husband's story sounds very similar to my partner Jonathan's (I've added a link below). He was diagnosed last year (Christmas 2012) with PC in the body and tail of the pancreas advanced to lymph nodes, liver and abdomen. Like your husband, he was alone when told - we had so not expected bad news. Jonathan was a strapping 6'2" healthy 56 yr old and had only low level pain when he turned up to what we thought a routine checkup. We were told later that the consultant had not expected those scan results at all as he looked so well which is why he hadn't been given any indication beforehand that he might be going to hear bad news.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=3&t=1017

Since then he has had chemo (folfironox - 8 cycles) which seemed to have stablised the disease. We have a scan result lined up for next week. So far his main health complaints have been related to the actual treatment (largely tingling and numbness in hands and feet that he still complains about). He stopped taking pain killers after his 2nd cycle chemo and hasn't had jaundice either and we don't know if he will do (*touches wood*). People reguarly remark on how very well he looks and he is still eating well and enjoying his beer (ahem). I'm still working full time.

He has very recently started to get some discomfort when eating likely to be a need for enzymes but he has chosen to wait to next week to find out. If this is the case then this seems to be a problem easily resolved with pills (although a bit of a worry for me if not him but his paliative care nurse and key worker have both said it needn't mean anything ominous so will hope not - watch this space).

When we looked ahead after his initial diagnosis to the immediate future I thought of things we'd already planned - holidays booked etc - none of these did I think he would make or even be here for. As it was, we managed nearly all including 2 weeks in Greece in July. Life has changed to a new life of now not planning too far ahead, of making the most of each day where he feels well and trying to pack in as many nice things as we can. Hoping to get away to some more sun soon if his scan is ok.

I also try to remain positive and truly believe in hope for all of us on here.

This disease comes with a very steep learning curve which I'm sure you have realised and there is a wealth of experience on here so feel free to ask anytime. One thing I have learned is that everyone is different, in how they manage the disease or the treatment so best ignore the stats.

Everyone who has posted recently - sorry, we've been away but will catch up on your posts soon.

Cathy xx

Edited September 9, 2013 by Cathy

[Cathy]

Hi Lyn

Sorry - missed the bit at the end of your post.. have you got a Macmillan nurse or Community palliative care nurse? They will be able to talk to you about what services they can offer - in particular they are very good with symptom control inc pain control which might put your husband's mind at rest a little.

People deal with the diagnosis differently and it may be that your hubby would rather not know too much detail of the disease and deal with whatever arises when/if it does. Sometimes that's not an unhelpful tactic and avoids dwelling on things that might never happen. So you could do what I do - advocate for your hubby and amass all sorts of information that it might be helpful to know and share with him at some point in future but information he might not want or need to know about now.

I'm not sure if this helps....?

Cathy x

[Birchen]

Thank you Cathy for your email. I have gained a lot of help and information from this discussion forum already but if not yet come across anyone else who has it in the tail of the pancreas (except for your husband). My husband had not symptoms at all until he had the fluid on his lung and it really takes time to get over the absolute shock of hearing that he has cancer of the pancreas. Nothing in the world prepares you for it and I sometimes feel as if I am living in a dream. At the moment he is good and playing golf as much as he can. We do hope to get away but flying may not be possible as his left lung is now only 77 percent due to the fluid and adhesive they put in after draining it. We have been put in touch with the doctor at our local hospice and had an initial meeting with him and he will look at pain relief etc in due course. The main problem seems to be in our city is that we never seem to get the same GP which means you have to go through the whole saga again and again. I really hope your husband continues to do well and we think a positive attitude does help so we are trying to focus on that at the moment by taking each day as it comes. We see our oncologist in 2 weeks for a follow up CT scan so just keeping our fingers crossed. Lyn x

[Cathy]

Hi Lyn

Thank you.

Please keep us informed with how you get on.

I have read that often patients with the PC in the tail and body present fewer symptoms whch can mean the cancer is more advanced by the time it's discovered - a real double edged sword.

What's your hubby's name?

Very good he is managing to play golf - I think if I suggested golf to Jonathan he'd look at me as if I was barking mad. He's happy to walk anywhere tho, partic if there is a pub at the end of it for a recupperative guiness. Like your hubby, he looks and feels fine - both of which I think are things that cannot be underestimated in importance.

Keep in touch Lyn and take care

Cathy xx

[Birchen]

Hello Cathy. My husbands name is Terry and he also likes the pub. Fortunately for him he has some brilliant mates who have organised a golf buggy so the doesn't really have to walk far when playing golf. At least his mind is off it when he is playing as he still wants to win regardless of his cancer. Sure that the pub and a walk does the same for your husband. Will keep the forum posted of any new developments but our oncologist thought that when the cancer is in the tail the cells are passed around the body more quickly as the tail keeps moving but who would have thought something so small could cause so much damage. Speak soon. Lyn x

[InfoForMum]

Hi Birchen,

I can't offer anywhere near the sage advice others here can because they've been through and learned far more, but I did do something to ease the problems with having to repeat EVERYTHING many many times history, meds, treatment, symptoms-wise.

I'm used to writing reports so designed an excel doc to round it all up in a page or 2 I've handed over when meeting new docs. When going into A&E this week the doc thanked me saying it gave him info he'd have spend a couple of days rounding up.

IF you, or anyone else thinks having the template would be of any use I'll forward through. Just ask the moderators for my email address. It's helped me to note everything down for my own sanity too as sometimes, as some of the guys having chemo suggested, it works as a diary of symptoms to spot any patterns of issues with meds etc.

Take care and make sure you lean on the support line if needed. Great expert advice.

Sarah

XX

[InfoForMum]

I've sent a version of my excel template to the support mailbox so anyone interested can aske the moderators for it. Please use, abuse, slice, dice or bin depending on what you think or need.

Best wishes to you again Birchen and take care.

Sarah

[Birchen]

thank you Sarah. Will take a look as anything helps.

Kind regards Lyn

[Cathy]

Hi Lyn

How's Terry?

One thing I found helpful with Jonathan (which you might already have seen on other threads) is keeping a diary of treatment, drugs taken and any symptoms/side effects. It really helped us when we saw Oncologists and also helped us to plan ahead a little.

I like the idea of a golf buggy tho not sure they'd be legal driven back from a pub....

Speak soon

Cathy xx

[Birchen]

Hi Cathy

Terry is very well thank you. Hope Jonathan is also well. Terry seems to pick up a couple of days after receiving the gemcitabine and is good until the next infusion.

He is playing as much golf as possible as weather is still good and I go into work when he is golfing so we are adapting to our new life ok at the moment. Diary sounds a really good idea so will start one as any information they can give back on side effects etc is good. thank you for your help. Speak soon Lyn x

[Slewis7313]

I too kept a detailed diary until finishing my radiotherapy. It was really useful to compare notes through each cycle of chemo. I also used excel to graph all the blood results which again was handy at my monthly Oncologist reviews.... Much easier to read than notes in a treatment diary! You could cleary see the peak in platelets when I had the blood clot.

Steve

[Birchen]

Terry has just started his next round of gemcitabine/capecitabine today after a 10 day break as he went away on a guys golf trip. Seems to be having a bit more pain than normal which has spread to his right shoulder. Not sure what this is but hope we can get it under control. He had good results from his last CT scan with the tumour in the pancreas decreasing in size and all liver tumours otherthan two also decreased. Oncologist seemed to be very pleased so with a bit of luck this may continue to be the case. Hope everyone else is doing well and thinking of you all.

Lyn x

[Birchen]

Really cannot believe how many people have passed away recently on this forum but the thing that really stands out is the care and compassion shown by each and every ones family and they are truly an inspiration to everyone else who has a loved one suffering from this dreadful illness. I only hope that we as a family will be strong and able to deal with this illness as it progresses as know one knows how it will progress.

At the moment my husband is well but initially it was thought he would only have about three months but he has responded to chemo very well and the oncologist is very pleased.

thinking of each and everyone one of you

Lyn xx

[belgrade]

So glad to hear that your husband is doing well at the moment.....a victory against this vile enemy!!!

Take care,

Hilary x

[Birchen]

Had an appointment with the oncologist yesterday and he seems to think it is beneficial for Terry to take one dexamethasone tablet a day, believe this is a steroid and Terry seems concerned about muscle wastage on his legs, which oncologist says is a side effect of this drug (think it has something to do with affecting his golf) otherthan that he feels that everything is going well with the chemo.

Emotions seem all over the place at the moment as Christmas seems to be so close and is a milestone in the time span they initially gave us. Very much hope they are wrong and that meds continue to do their job.

thinking of everyone on this forum

Lyn x

[cestrian]

Hi Lyn

Both my GP and oncologist at local hospital gave me an equally gloomy prognosis but like Terry I'm still amazingly well, cycling a bit, walking my dogs and getting out and about with friends and family.

I'm also Gemcitabine and have no side effects. I feel fortunate to be on a clinical trial under which I receive excellent care from all the team. I'm also lucky to have a great GP who I see every 3 or 4 weeks just to review progress and keep in touch as I get my Creons, Omeprazole and Tinzaparin via the surgery.

Keep the faith and like me count your blessings that Terry is feeling so well. My trial professor, who is very approachable always reckons that how I feel and look are his most important guide to the effectiveness of my treatment. Mind you that doesn't seem to reduce the number of blood tests, observations and scans that I have as part of the trial!!

Good luck and stay positive.

Love and Peace

Mike

[Cathy]

Hi Lyn

Great to hear Terry sounds like he is doing well.

I think we are all with you about Christmas. My Jonathan was diagnosed just before Christmas last year (what a sureal time that was) and now we are tentatively making plans for this one..

You are right re the steroids. They are wonderful tho poor Jonathan did have muscle wasteage on his arms and legs however it was a great energy enhancer and appetite booster - he felt he could eat a horse. Swings and roundabouts really (especially for the horse lol). His arms and legs did build themselves back up very quickly after treatment ended if that is Terry's worry but he was definitely wobbly for a little while ( although I am pretty sure was a good part due to chemo and not steroids - difficult to say).

Hope this ramble helps....

Cathy xx

[Birchen]

Yes he definitely is eating more and thank you Mike and Cathy for your comments they are really helpful as everything is still new to us. This site is truly inspirational to everyone that is fighting this terrible illness. Hope Steve is recovering well.

thinking of you all Lyn x

[Birchen]

Terry has had a very emotional couple of days which he is finding hard to shake off. Maybe the dreadful illness or just feeling really sorry for himself. This is very difficult to deal with, knowing if you are saying the right thing or better saying nothing. Can normally talk about anything as we have been together over 30 years but sometimes feel lost for words.

Sure at some time or other you have all been through the same. thinking of you all Lyn x