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Totally in awe of my wonderful Husband!


Proud Wife
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I am so pathetic. The first sign of something not quite right and I'm bawling. I was only posting on Shelda's thread this morning about me not being able to wear a mask and hide the tears.


On diagnosis, hubby's CA19-9 was 103. It fell to 22 at once stage during Folfirinox. Was 33 on blood tests prior to cycle 12 last month. Hubby was having chemo once every 4 weeks at his choice in order to have quality of life and we are now 5 and a half weeks into the 6 week planned break. CA19-9 is today 46 which although very, very low compared to others on here, for my hubby I'm worried it's a significant increase. Especially when it was only 103 at diagnosis and he was terribly ill at that stage.


We don't get to see Oncologist until next Thursday. It was hubby's idea to ask for blood results so it's not Oncologist or anyone else's fault that we got blood results ahead of next week's appointment. Next few days for me are going to drag. Hubby continues to be amazing and takes it all in his stride.

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PCUK Nurse Dianne

Thanks Proud Wife for your post,


I hope you do not mind me answering here, and it would be good to hear from other forum members too in this instance. I am sorry to hear you will have anxious days, and this can be one of the issues associated with blood tests. They are used as a 'guide only' and we hear stories of others who live anxious days waiting for their next CA 19-9 to see if it is coming down or increasing. It is good to be able to have access to these, however they do provoke anxiety, in both waiting for the result and then even small increase of 1-2 numbers can be upsetting for most patients and families.


We have seen in the past that some patients have had a small rise in the CA19-9 that has not been related to tumour activity, CA19-9 can be elevated due to other causes, ie infections. I note you say that your husband is on a 'chemo break' at present, and I would say that it would not be uncommon to see a rise when patients have just come off treatment. There is also some evidence that the Folfirinox has its biggest impact in the early stages, so this may justify the rapid drop of the CA19-9 in the early stages of chemotherapy.


I also take on board your comment about the initial CA19-9 at diagnosis and your husband being unwell. We so often find that patients are in poorest condition at diagnosis, and with support and information that is given subsequently that we do see an improvement in the patient when their condition has been 'optimised'. Also one of the many benefits of having chemotherapy is the regular review and management of symptoms that will also help patients to have good quality of life with less symptoms whilst having treatment.


I do hope this is of some reassurance to you Proud Wife, and the fact that your husband is doing well is encouraging and a good sign. Do keep up the great work as your support and encouragement will mean more than anything else to him.


Dianne

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

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PW,


Sorry to hear that you are having an anxious wait and I do hope that Thursday's meeting with the oncologist is a positive one.


One thing that makes the waiting so hard with pancreatic cancer is that there is so much at stake. You certainly aren't pathetic, you're just human!


xx

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Thank you Wife & Mum. Dianne, of course I don't mind you posting, any information/comment gratefully received.


I've not slept last night. Hubby doesn't really want to talk about it before Thursday but I like to be as prepared as I possibly can be, especially as he was so badly misdiagnosed at the beginning. It's all about working out what's the best thing to do but of course, none of us can see into the future.


As I've mentioned before, hubby couldn't endure folfirinox every 2 weeks adamant that he wanted quality of life, which of course I totally respect. He therefore went from 2 weeks to cycles of every 3 weeks, then to 4 and then there was a break of 5 weeks in relation to a couple of cycles. This has enabled us to lead a perfectly "normal" life I would say for the past 8 months once he was able to put weight back on and that has been so very important to him.


Looking now at the breaks between chemo cycles, although within normal range for months, I have seen that from October onwards, his CA19-9 has increased each month steadily but surely. Add that to the possibility that one of the liver mets is growing and I'm immediately panicking, rightly or wrongly.


Between October and November, it was +2, November and December +2, December and January +7 and now between January and February +13. I know that's not a lot but when he was only 103 on diagnosis, that for him is a big jump.


My head tells me I need to wait until Thursday but I beat myself up, trying to work out if his CA19.9 is increasing because we've left it too long between treatments and if he went back on folfirinox more regularly (if Oncologist is happy for him to exceed 12 cycles) would his levels start to come down again (I am deluded?!!!) or does the increase mean he's no longer responding to treatment? Oxyliplatin was removed at around cycle 10 so perhaps that's why markers are up?


Secondly, researching what's left to try and it seems its Gemcitabine and Abraxane? Again, I've noted that's treatment every week for 3 weeks and 1 week off.


Has anyone had experience of becoming resistant to folfirinox and then moving onto gem/abraxane? How did it compare in terms of toxicity although of course I appreciate everyone is different? My concern is, with only one week off in 4, with a high risk of serious infection (something hubby totally avoided on the fox) what quality of life would he have? I can't imagine he'd have much of a life on that type of regime because there is no let up or do I see that wrong?


It's hard to believe that hubby is even ill at the moment as he looks and feels so well. My biggest concern is that he moves onto gem/abraxane straight away and his quality of life goes downhill and perhaps doesn't improve. Is that a risk worth taking when at the moment, we could have a good life together, doing all that we want to do but obviously without treatment......


I may be totally premature in my worrying but I just can't help it. I can't broach this particular subject with hubby until nearer the appointment as he understandably wants to "forget" about cancer and I have to respect his wishes.



Any advice that anyone can offer me, either in relation to CA19.9 in addition to Dianne's comments or experiences of chemo would be very gratefully received. At least I can get stuff of my chest here without annoying hubby which is the last thing I want to do.


Thank you xxx

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Proud Wife

I can totally empathise with what you are saying having been in this position with my husband and I understand your wish to be well prepared for Thursday. I can't really add anything to what Dianne has said about CA 19 9 levels.


My husband was on a Gemcitabine regime prior to Folfirinox. He had three months of treatment and felt very good on it but the cancer returned and he moved over to Folfirinox which he did not tolerate so well and which seemed to mess up his bowel.


Unfortunately, until a person has treatments we don't know how they will react. Your oncologist will have ideas about the next steps so I would be guided by him/her. I'd also be guided by your husband's wishes.


Catherine

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Hello Catherine


Thank you very much for your post. I've read Stephen's story and think you are very brave to come back on here and help others, when you are going through your own grieving process. I only hope and pray that I can be as strong as others on here.


I've looked back through hubby's blood test results and have notice his CEA marker has been increasing as well over the past few months. I suspect that probably does mean the Folfirinox is no longer working and I'd rather prepare myself for that now and be wrong, rather than be told that on Thursday and burst into tears at the hospital!


I've even managed to have a chat with hubby today (sometimes really difficult to broach the subject) which was really good and one thing I need to bear in mind is that he's currently feeling and looking very well, so perhaps 2nd line treatment can wait until if and when he starts to get any symptoms of progression. I'm sure his oncologist will advise us further, I just want to know what our options are. I know I'm jumping the gun but I can't imagine life without him and I cannot bear to see him suffer, so I will do everything in my power to make sure the right decisions are made, whatever those difficult decisions may be.


Just being able to come and hear and chat, makes such a difference, thank you all!! xx

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Hi PW, I think you are jumping the gun although it's understandable. We were told that rather than just CA19-9 levels, they tend to go on symptoms more than anything and you say he is well. Are you due to have a scan or will you not know until the appointment as that is the only thing which will tell you what is going on. It may be that folfirinox with or without the oxyplatin could be started again - it certainly wouldn't be seen to have stopped working if you've been on a break. they may consider other chemo although I'm not sure abraxane would be suggested as it is my understanding that is a first line treatment only but I could be wrong. A scan will show if there is any progression and you can't really make plans until then. And until you know what the situation is, your husband can't really make any decisions of treatment over quality of life. Didge x

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Morning Didge


Hubby had a scan 6 weeks ago and there was a question mark as to whether one of the liver mets had grown. So of course, I've taken that into account with the increased markers and decided that 2+2=5!


I think you are spot on about symptoms and he is extremely well at present, eating like a horse, no problems with pale stools or dark urine and either maintaining or very slightly gaining weight. Blood sugars tested and no diabetes so I am going to try and relax until Thursday and hope that I've made a fool out of myself by making a mountain out of a molehill!


How's your baby grand-daughter doing? Hope her mum is not too exhausted xx

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Hi PW, sorry you are feeling out of sorts, I always find I get really emotional and snappy when mum has tests and the wait for results is unbearable (goodness knows how mum and your hubby feel) with regards to CA19 mums had quite a jump during first few months of chemo and when I questioned it I was told you can often seeing it go up when the chemo is actually killing the cancer cells as its then in the bloodstream, her Dr agreed and said best thing to do is look at those numbers along with CT results for a better overall picture...hope that helps a little if I've made sense that is.

Lots of positive thoughts your way for Thursday xx Shel xx

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Hi Shel


Thank you very much for asking! Yes all good. Oncologist very happy with hubby. Although tumour markers have increased they are still not very high and he thinks it best that hubby have another 6 week break from chemo to recover from the Folfirinox. The next step will be Gemcitabine and Abraxane but not I suppose until he really needs it which is hubby's view and I have to respect that.


Given that he has no symptoms at all and continues to eat well, it is probably the right decision. I've seen the new thread about maintenance chemo which was great to read but hubby wants to keep the new chemo in his arsenal of future weapons so to speak and attack when he really needs to. He can then go back to Folfirnox or a version of it at a later stage. Oncologist described restarting chemo in terms of driving and deciding when to cut in front of another car without causing an accident. I hope and pray it's the right decision but in any event, hubby can enjoy another 6 weeks at least without chemo.


How's your mum doing and are you holding up okay? Don't know about you but I'm shattered today and have been battling a migraine - probably because I've been getting myself in a state.


(Very very very) Proud Wife tonight xxx

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That sounds good news has he had a recent CT too?? So good he's still got his appetite. Sounds like you could both do with getting a little break away to a nice hotel, bet he's looking forward to 6 weeks of "normality".

I'm fine just trying to take everything day by day...hope that migraine shifts soon and you can enjoy your weekend after the build up to that appointment. Lots of love xx Shel xx

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Morning Shel,


Yes, 6 weeks ago which showed just one of the liver mets to be growing (which is why, combined with increased CA19.9 I started to panic) but stable for the rest. He will have another CT scan in 6 weeks time so will know more then. However, everyone has been telling me to go by how hubby is and I think that message has finally sunk in now and as long as he continues to out eat me, I know all is good as I can eat for England as it is LOL!


And yes, we were planning on using the next 6 weeks to live life to the full and go away etc but my health isn't brilliant either, I said as soon as I hit 50 it would be all downhill from there and I was not wrong!! That's why my hubbys diagnosis came as such a shock as I was the ill one and he was taking care of me!


I am due to see specialist on Monday and depending on results of MRI we will take it from there. Apart from being diabetic myself, I have throat and neck problems and now I am having problems using both arms and so it goes on...


Will pop over to your side now to see how your mum's doing! That's all you can do, take it day by day. Hope you are able to enjoy your weekend too. Take care xxx

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Hi Proud Wife,


I just wanted to comment on what Dianne wrote you about the Ca19-9. I know how very anxious those numbers make you feel, more so the loved one than the patient. My Dad couldn't have cared less about them, he was only interested in what the scans showed. Dad's numbers came down quite steadily, if they happened to go up by 10 say, I was very upset, but as Dianne said that doesn't really mean anything, it could be a slight cold or unfeeling. I wouldn't worry about these going up by a small amount.


It is so amazing that your husband has a wonderful appetite, rarely not many people do. Seriously embrace that. Dad's appetite was pretty ridiculous, he would have porridge for breakfast, cream muffins and chocolate bars at 11, a roast dinner, a salad for tea and a pizza or kebab for supper. He was desperate to put weight on. He wanted to get to 11 stone for Christmas.

Your husband is fighting, and long may he continue to win. I really hope your husbands next scan results show shrinkage. State of mind is so important and it will relieve some pressure from his mind.


Leila xx.

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Hi there Leila


I've read all of your posts today and my heart really goes out to you. Your dad was far too young, as is my hubby and indeed, lots of others on here too. That's part of course what makes it so hard to accept. However long we have our loved ones is never ever long enough.


Am I right in that your dad ate loads but failed to put on weight? That was an amazing amount of food he put away. I'm constantly in the kitchen now, cooking up all types of goodies to keep his interest in food. The funny thing is, before he was diagnosed and for most of our 20 odd years together, he never ate much at all and didn't get excited about food. Now I get, "how long for dinner, I'm starving!!"


It really makes me therefore wonder when the cancer started, could it have been brewing for many years undetected or do tumours like this grow within months? I don't even know if anyone knows the answer to that, not that it makes any difference, I'm just amazed to see such a change in his eating habits.


I think Leila, shrinkage is a hope too far, I will settle on stable; time will tell and in the meantime, Nigella Lawson here (I wish!!) will carry on cooking delights!!!


Thank you so much for your continued support, it really means a lot. I just wish I could wave a magic wand and make your hurt disappear. If you ever want to get things off your chest, I'm always here xxx

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Just read your lovely message in mine P. Oh dear I'm sorry to read of your own health worries, I hope that you are managing to look after yourself too as well as your lovely hubby?? Seeing how my dad is I can see what you are going through and like you my dad has health problems and my mum and the family have had such focus on dad being poorly mums has come as a massive shock, she's always been the strong one.

Let's hope this nice dry weather continues for you to have a nice break away.

Take care P xxx Shel xxx

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Hi Proud Wife,


Dad was a tall slim man, before diagnosis he was a very typical 3 meals a day, no snacks at all. If he missed a meal time, he would just wait until the next one. As a child he never had chocolate or crisps in the house. He went down to just under 9 stone. He ate loads, as you have read, he did out weight on, mostly on his stomach. But no where near enough as he wanted. If he didn't suffer with diarrhoea, then maybe he could have kept more weight on.

We don't know for sure what caused the cancer, whether there even is a cause, but Dad always thought it came from Hernia he had a year before. He was always certain of it. I don't know anything about hernia's to comment, that's just what my Dad thought.

When it comes to scans on the pancreas, the same as before is always a good result. I would say that to my Dad, if they say its the same, don't be upset, it is a good result and shrinkage is an absolute bonus.


Dad did say, if he had his time again, he would have ate what he wanted all his life and been big. Keep cooking him great meals. Not many people are able to have such a great appetite with this nasty disease. I did fight hard to get my Dad steroids. They didn't want him to have them as they are to give someone an appetite, but I wanted them so he didn't lose muscle mass. We did eventually get them, whether they helped, I don't know.


Leila Xx

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I don't know if I've spoken too soon. On advice of oncologist, we've been reducing daily dexamethasone from 2mg per day and were down to 1/2 mg but I have noticed a mood change with hubby, decreased appetite and he is starting to lose weight. I've upped him to 1mg daily but doesn't seem to make much difference yet. Will give it to weekend and then up to 2mg. I'm presuming he will only need creons if stools pale oily and floating or would they be needed if he continues to lose weight despite going up on dose of dexamethasone?


Leila, I think you are probably right although being big brings it's own health problems of which I'm walking proof so it makes me wonder what is actually best! That's strange that you should mention a hernia. Hubby had a tripple hernia op about 12-18 months before diagnosis. I'd never have thought that a hernia could do it, I would have said diet and lifestyle perhaps but now...???


Am I right that its the anniversary of your dad's passing next month?


PW xxxxx

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Hi Proudwife, the only way to know if Creon needed is to do a faecal elastase test. When Ray was ill our oncologist told us several times Ray didn't need Creon. Armed with information from Jeni and Dianne we pushed for the test and guess what? He needed Creon!


Creon can't do any damage and will probably help.


Good luck with it.


Julia x

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Hi Proud Wife,


What Julia says is absolutely right. Creon will not hurt. Creon isn't a medication. It is an enzyme. GP's know sod all about them, do not take thier advice on them, because they don't even know what they are. Speak to the oncologist. But it will not hurt your husband whether he may need them or not, to take them.


I don't think lifestyle has anything to do with it anymore. Dad had a great lifestyle. Very very fit, ate very well. Had a roast dinner every day with plenty of veg. I think the best people in the world, or just being picked out.


Yes, you are right. Dad passed away 21st April, 6.25am. It would also be his 64th birthday this Monday.


Leila xx

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Thank you Julia and Leila, much appreciated. Hubby hates taking pills so I've got my work cut out for me!


I've just read Ray's story Julia and I'm really sorry, Ray didn't have an easy ride at all. As I get to know you all on here,it;s important for me to understand what you all are going through or have been through.


Leila, Spot on about the best people in the world being picked out for this awful disease. I could not agree more.


You will probably find the first of everything is the very hardest to bare. First Christmas without your Dad, first Easter. Now you are approaching his birthday, that's a really hard one. I've always marked these "special days" by lighting a remembrance candle, buying some "birthday" or "anniversary" flowers for the house and on birthdays, either going out or making a nice meal for my hubby and son....just something to acknowledge the day and to show that loved ones will NEVER EVER be forgotten. When my son was little, I always used to write him a birthday card and give him a present from his nanna and poppa, little things like that can help.


If you are finding it hard to cope the nearer you get to those memorable dates and you would like to, please ask moderators for my email address, more than happy to support you in any way I can. You are not alone ok? xxx

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Hi Shel


Yes thank you very much - better! Hubby seems to be eating more now and weight stablised so it seems we took the dexamethasone down too low.


How's things with you? Will pop over to you side now! xxx

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