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Totally in awe of my wonderful Husband!


Proud Wife
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PCUK Nurse Jeni

HI Proud wife,


The case of this being an "individual" number is true, but feel needs a little more explaining.


Ca 19.9 (Carbohydrate Antigen) can be raised in several cancers - such as pancreatic, gastric, oesophageal, bile duct and gall bladder cancer. This is a protein secreted by highly active cancer cells. Anything below 37 is a normal reading, and anything above this, is abnormal. Of course, there are degrees of abnormality!


For some, their markers will never go any higher than the hundreds, for others, they go into the thousands, and tens of thousands. Having high tumour markers on their own does not constitute what makes an "advanced" cancer.


Advanced cancer is cancer which has spread to other organs, and this can be the case even with low tumour markers. This is why they are not taken as a "stand alone" to diagnose, or predict outcomes, but with the bigger picture - CT scans and how the patient is.

There has been some research into prognosis and very high ca 19.9, and this has shown that a very raised ca 19.9 can indicate a poorer prognosis.


The biopsy question is a more complex case. Gold standard for inoperable pancreatic cancer is to have tissue diagnosis to ensure the right chemo is given. Occasionally, you will get an oncologist who has enough "evidence" from scans etc...to get on with the chemo, and not wait for a biopsy.


In many cases, a biopsy or even several biopsies can be taken and results "inconclusive", meaning that they did not see cancer cells in the sample, even though they know this is a tumour, looks like a tumour, behaves like a tumour etc.... Clearly, the chemo worked, so was the right one, so the matter of the biopsy is less relevant at this stage, but you can ask the oncologist should you wish. Its unlikely they would do a biopsy at this stage, unless hubby was going into a clinical trial at some stage.


Kind regards,

Jeni, Support Team.

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Hi Pw

CA19-9 levels are specific to a person and are a good indicator, taken along with everything else like how the person is feeling, blood tests etc. as to whether the chemo is working. So you may have a fairly low marker at the beginning or a much higher one but that is what will be watched, whether it is increasing or decreasing. Around 80-85% of adenocarcinomas of the pancreas will cause a raised CA19-9 level as far as I am aware but decreasing with treatment is a good sign that the treatment is working. Other things can cause the level to be raised though and there are frequent blips of up and down, but a sudden significant increase would be cause for the doctors to look at what might be happening. As for a biopsy, radiologists, so I am told, can take a good guess at what they are looking at from the scan and to treat your husband with folfirinox, which is pretty heavy duty, without a biopsy, shows they must have been pretty confident as to what they are looking at. One bonus in not having a biopsy is that you do not get the results of what it looked like under the microscope. Poorly differentiated tumours are more aggressive than well defined tumours so if you don't know, assume you are in the latter camp!

No news of the baby yet...

xxx

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Oh thank Leila, Jeni and Didge so much for your detailed replies. I really appreciate it! What you all say makes perfect sense now. And I agree Didge, sometimes too much information is not good! We know what we are up against and have complete faith in the oncologist but sometimes it doesn't hurt to make sure that nothing has been overlooked.


Looking forward to hearing some happy baby news soon!


Have a good evening xx

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You are welcome.


Hope your husband is ok at the moment.


Don't be scared to ask questions PW, that's what we are here for. We all want ti help in any way we can.


Leila xx

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Thank you so much Leila. Your words are so kind and very much appreciated. I'd thought I'd be chatting more to people who are currently going through this ordeal, rather than those who have lost their loved ones and it's just so lovely that you all take the time to come on here.


I hope also, that my sharing hubby's story, I can try to help others who have only just been diagnosed.


Didge, presume no baby news yet?!! xxxxx

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YAY!! Many congratulations to you and your family. So nice to hear lovely news for a change. Hope Mum and baby doing well, is it your daughter or daughter in law? Please tell her a very big WELL DONE from me. I suspect Grandma is going to be kept nice and busy in the next few weeks ;)


All the very best Didge xx

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Hope all is well with your daughter and new grand-daughter Didge. I won't ask about the sleepless nights!


I have 3 questions please if someone could help me out.


Firstly, I note that several people take creons. After the first few cycles of Folfirinox back in July last year, my husband was skin and bone. No appetite or interest in food. We saw the oncologist who said he would prescribe some hormone treatment which I now presume was creon? Anyhow, we had an appointment to see his pain management specialist who gave me advice on dexamethasone and metoclopramide which did the trick and he is now over 4 stone heavier, with the appetite of a horse!


On advice from his oncologist, we are now gradually reducing both medications and will obviously monitor his weight but will he then need creons? I am not sure when they should be taken.


Secondly, in terms of pain relief, my husband has for the past year been taking 60mg MSR twice daily. Yes, 60mg and he's totally alert and with it!! He was in absolute agony to begin with, hence the high dosage but we know the pancreatic tumour has shrunk slightly and the liver mets have reduced. However, he still remains on 60mg daily and like the other 2 meds, I'm wondering if we should be asking doc to reduce this dose whilst he's stable so that we have "somewhere to go" in the future? We are very much the type of people that if its' not broken, don't fix so I'm scared to even suggest this to hubby but is it harmful to be on such a high dose of MSR for so long?


Finally, whilst I get to grip with how to use this forum, is there perhaps a setting that notifies members when stories are updated, rather than keep logging on to see if anyone has posted?


For me, this is a wonderful place to be because I can talk openly about PC without either boring other people or reminding my hubby of his condition which he'd much rather forget!!


Thank you and have a lovely weekend xx

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Hi proud wife.


Creons are pancreatic enzymes. The pancreas produces enzymes to help digest fat that we eat. Again this is something which is individual to oneself. Someone might need just one with a meal, or 12 with a meal.


You cannot overdose on creon, that is important to know. Some doctors might say you can, but they don't realise what they are. They are not medications.


You don't take them for the size of the meal, you take them for the quantity of fat.


My Dad needed 12, 40,000 creons with each meal. One way of knowing if you are taking enough, is when your husband goes to the toilet. If he stools are pale ( yellow ) and watery, even spray like, then more creons would be beneficial. You take them just before a meal. Though my Dad would have some before and some during.


I know some people don't need creon, most do, but not everyone. Maybe your husband doesn't or he would already be on them. What are his stools like?


Dad had the two medications your husband is already taking. He had the steroids to not lose muscle rather than for appetite. Dad's appetite was also like a horse, and that continued.


Brilliant news that your husband is also like that, it is so important. Well done for him putting all that weight back on, that is absolutely brilliant too. He must feel so much better for that


Can't help with your second question though, sorry.


Leila xx

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Hello PW

re pain relief, if he can reduce the oral morphine, I would say that is a good thing, no harm in testing it out. If it doesn't work he can increase it again. Morphine does bring side effects, including constipation, so I would not take any higher does than necessary. Some alternatives can help too among other things cannabis oil, although illegal in this country, does help with pain relief enormously. In fact a friend of mine told me that she took part in a medical trial comparing opiates v cannabis oil 20 year ago in Scotland and cannabis oil came out on top, but was never heard of again. So there are plenty of options available in the future for those who want to seek it out!

xx

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Ah! Thank you for explaining that Leila. I keep telling him to watch his stools to make sure they are not black (my late dad didn't tell anyone he was until it was too late) but not pale or watery ones. I will make sure he's aware of that too now, thank you.


Problem with the morphine Didge is that he takes it in tablet form and it's slow release throughout the day. He's got oromporph as a top up but never needs to take it. We are seeing his oncologist at the end of the month for the results of blood test so will ask what he thinks. Yes, I've been told about cannabis oil! They really should legalise it for those that need it. How's Baby by the way, has your daughter named her yet? xx

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Hi PW,

It can be difficult reducing analgesia especially when it's been used over a long period. The general idea is to use the faster acting oral morphine as a top up if needed. If needed on a regular basis then the regular morphine would be increased. To downscale the regular morphine would be reduced by a small amount. Supplementary oral morphine can be a back-up but if not needed, then the regular morphine could be further reduced, allowing a reasonable period for the body to adjust.


Twenty months ago I got up to 80mgs of Morphine daily when I was having trouble with my bones. Fortunately I was able to reduce and stop this as I responded to treatment. More recently I have been taking 10mgs twice daily. I suspect I could now stop these but psychological factors can also play a part.

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PW I will reply to you on this thread as I'm conscious of not cluttering MSH's blog.I have found that I haven't had a two week treatment as yet due to a variety of reasons. After my first Folfirinox my bloods weren't quiet ready and so it was 2.5 weeks, we then had a planned holiday in Spain so it was 2.5 weeks between my 2-3 treatment and has just been 3 weeks between my 3-4 treatment. My neutrophils had gone from 1.1 last Monday to 4.9 yesterday so the week made a great difference.


Due to not being able to have chemotherapy last week I went to the Cotswolds with my daughter for a night and then travelled to Salisbury to stay with family for the weekend. I had my 4th cycle yesterday and have to say it seems to be getting easier. I have no pain and have never had pain (I don't want to tempt fate through typing this though) so that is good. If it wasn't for the fact that I know I have this diagnosis I really don't think I notice any difference! So far I have suffered with no neuropathy, sickness after the initial chemo day and my fatigue levels so far have not been problematic. I am well aware the mid cycle scan will be the reality check though and just hope for no spread and a reduction in tumor would be marvelous news. I am reading more positive stories about Folfirinox regime and the fact that it is still in early days in determining long term outcomes.


I now plan another 3 weeks before 5th treatment as we had booked to go to Spain again as my son is 21 in the next few weeks and we wanted to go as a family and take his girlfriend. We are going to spend the weekend in Valencia and plan to cycle through the park. It is a fantastic city. If I had been able to have my 4th chemo last week it would have meant I should have had my 5th chemo before we went to Spain but has it had to be this week it means 3 weeks before next treatment. I am finding though that the 3 weeks break seems to be working well and is nice to have more quality time.


I wish you and your husband all the best

Ruth xx

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PW on the subject of creon.


I have been taking them since seeing the specialist nurse who had completed a research project on the matter of creon with pancreatic cancer. She is a strong advocate of taking them. She advised me to take 3 with snacks and 5 with meals. She advised a layering effect, so taking one just before eating and then taking regularly through the meal finishing with a creon. She explained this is a layering effect in the stomach which helps with digestion of food.


I have to admit I often only take 3-4 with main meals but if I notice my stomach is more grumbly than usual or stools pale I up the creon. I hope I have given this information correctly! I think it is an individual matter though and one to be advised by specialist nurses/medics for each situation.

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This thread has given some useful information both re reducing pain relief and also in the use of creon. My partner never took creon but I am now realising that it might have been a good idea to increase absorption when he was losing weight. Yes, the baby has been named - but not registered yet so can only assume it is final! x

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Hi Ruth


I'm so sorry I didn't realise and the last thing I want to do is clutter MSH's blog as I am in awe of that gentleman! I've deleted it and will reply to your last post here if that's okay. My son is only a few months behind yours in age and it's a great and special birthday to celebrate - I've made that my hubby's next target to aim for. Valencia is indeed a beautiful city and a wonderful place to celebrate your son's 21st.


How has chemo gone this week for you? I presume you were disconnected from your pump today? Do you get a neulasta injection the following day out of interest? I am so pleased that you are also having it once every 3 weeks at the mo, it's such a tough chemo I really wonder how people manage it every fortnight. My hubby is a tough cookie and nothing phases him but even he couldn't tolerate it that often. As much as he's fighting to stay with us for as long as possible, quality of life is equally important to him and as I said in my previous post it's worked so well for him. I am confident your mid cycle scan will give you a much needed boost by showing a reduction, please keep thinking positive and it will happen!!


My hubby is having blood test next week to check his markers etc, he takes it all in his stride but I am starting to get nervous. I was okay when he was on Folfirinox because I knew it was doing it's job but I don't like the idea of no treatment in case it allows the either the pancreatic tumour or the liver mets to grow. We have to wait until the 25th for results, only because his oncologist is on holiday and it's the waiting that's the very worst!!


Again, sorry about baby's name Didge, when you get absorbed in someone's story or something that's happening, I forget that personal details should not really be given out on the forum -I'm learning!


I agree, some really helpful information on both creon and pain relief. Thank you to everyone. I've spent the past 10 months researching PC and there's still loads more to learn!


MSH, thank you in particular for your advice on MSR reduction. Apart from the early days,he's not needed to top up with the liquid stuff. As I said before, in total awe of your journey and to have been on 80 mg twice daily before, you must have been in a really bad way. I know exactly what you mean about the psychological factors, which is probably why hubby's been on 60mg now for so long. He's going to take your advice and ask the oncologist to give a new prescription on next visit, I think its going to be really interesting and telling for that matter to see how far he can come down, slowly of course, without any pain.

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Hi Proud Wife


Please don't apologize, it was more me not wanting to clutter MSH's thread as when I read if from start to finish I noticed a comment stating MSH wanted to use it as a blog. It's difficult sometimes knowing where to reply/post. I felt really good yesterday after my 4th Folfirinox. Had lots of energy and felt very bright, however today I've been very emotional. I think this is likely to be due to the nature of this illness and possibly the steroids/medication.

I am prescribed 0.5 ml Nivestim/Filgrastim which I inject myself sub cutaneously for 5 days following chemo to boost neutrophils.

I had a look at current world wide clinical trials last night on the Internet. There were nearly 700 listed! I was interested to read that Florida are recruiting for PC clinical trial using the Proton beam. There is a set criteria for eligibility but am wondering if proton beam maybe something to be used successfully for PC. I will obviously await my 6 cycle scan results before I can consider further options.


I understand your anxiety regarding your husbands completed his treatment. Is the intention to continue with Folfirinox four weekly as a maintenance therapy for him?


Take care

Ruth x

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Ruth, you are entitled to have a wobble!! I've been following your story and you are doing amazingly well on Folfirinox. I don't think you'd be human if you didn't have a really emotional here or there at the very least. How are you feeling today? I hope a little brighter although I found my hubby had his worst dip at around days 4-6 which is where you are at now.


As to my hubby's treatment, I really don't know. We were told that he wouldn't have Folfirinox again. I've heard conflicting reports. Some people have had 30+ cycles (oh my word!) and then I've been told there is no evidence to support that over 12 cycles have any additional effect. I suppose it depends on each Oncologist. In any event, after cycle 9, they had to remove the Oxylaplatin part of the cocktail as it was and is still causing neuropathy, so how effective Folfirinox would be without that I don't know either. All will be revealed after the results of the bloods I suppose. I hope and pray he is still stable with no progression and if that is the case, then we both like, if the oncologist agrees, some treatment to keep it stable. We are vert interested in Nanoknife but have not done any research yet as to whether hubby is suitable or not.


We have just been out for a chinese meal and were given fortune cookies. Hubbys read "A change of direction on Wednesday could lead to a brighter future". He's having his blood tests on Wednesday!!


Have a good weekend and I sincerely hope your spirits have been lifted today and you are feeling brighter. xx

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I hope the fortune cookie is accurate PW!! I have heard mixed reports regarding number of Folfirinox treatment which can be given. I could be wrong but I think it depends on how the individual is responding and whether the person's physical state is safe to warrant continuing. I have heard of individuals having maintenance chemo at less regular intervals.


I am going to discuss the issue of steroid medication with the Consultant/nurse as I have heard it can cause nasty mood effects which appear to be happening to me around day 4-6.


Ruth xx

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I don't know, hubby's response has been brilliant, considering the amount of liver mets he had and apart from the neuropathy, he looks so well, you'd never know almost 11 months ago now he was delivered the devastating diagnosis of terminal PC. Hopefully he is still stable and in which case, yes, maintenance chemo at less regular intervals I think would suit him down to the ground - we'd just rather keep attacking it rather than wait for it to become active again and then have to start treatment again aggressively. Quality of life is so important to my hubby than quantity and as much as i want him with me for as long as possible no matter what, I have to respect his wishes.


How are you feeling today? I noticed on another thread that it wasn't just one day of being emotional. What steroids are you on and what strength? I have noticed that hubby can be very aggressive on them, especially the increased dose for the days 2 and 3 of the cycle - he was given 4mg dexamethasone twice daily which is a lot but then again, with such toxic treatment as Folfirinox, the body needs them. I suppose having to take the steroids is like being stuck between a rock and a hard place. Let me know what the consultant/nurse advises. Not sure if there is a different steroid that you could try perhaps? good luck xxxxx

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Hi there


I have been prescribed dextramethazone also. I have really struggled with it this time and had significant mood changes between days 2-5. I am going to speak to my clinical nurse about this and whether there are alternatives. My family have noticed that the emotion I have experienced over the past few days is really abnormal for me. I have read steroids can cause mood changes that are unpleasant.

Anyhow the sun is shining today so we plan to get out in the fresh air and walk over Edale!

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Hi Ruth


Hope you had a good day walking in the sunshine (roll on summer) was a great idea to get out in the fresh air says she who has been stuck indoors today!!!!!


If this has been a one off so far, perhaps it might be a combination of the steroids, the effect of the chemo because let's face it, Folfirinox is not for the faint hearted and the natural emotional effect of this evil disease which will hit you when you are at your lowest point thanks to treatment but if there is a pattern emerging, then I agree you should see if there are any alternatives. I can only speak from experience and say that without Dexamethasone, we'd have been lost.


By the way, I've just read your very first post and I absolutely loved your comment that you are determined to be your own statistic! Probably not a day goes by when I wonder if perhaps smoking or eating too much processed meats for example contributed to my hubby's diagnosis - there's always that question "why?" but when I read what a healthy and super fit life you led and continue to lead, then perhaps not. I get tired just thinking about those marathons LOL!!!!


Joking aside, if you want my contact details and want to have a chat by email for example which is more personal, please ask Admin for them.


Take care xxx

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