A forum for advanced pancreatic cancer issues

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Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Sat Jan 30, 2016 7:30 pm

Not yet!! x

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Sun Jan 31, 2016 4:59 pm

Baby girl arrived this afternoon, 7lbs 6 oz xxx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Jan 31, 2016 7:20 pm

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

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Sun Jan 31, 2016 10:41 pm

Thank you! It's my daughter. I hope to see them when they are out tomorrow xx

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Totally in awe of my wonderful Husband!

Postby sheena » Sun Jan 31, 2016 10:57 pm

Congratulations didge at last something beautiful has happened enjoy your little bundle x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sat Feb 06, 2016 10:29 am

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

Fifi

Re: Totally in awe of my wonderful Husband!

Postby Fifi » Sat Feb 06, 2016 6:28 pm

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

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Sat Feb 06, 2016 11:51 pm

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

Proud Wife
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Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Tue Feb 09, 2016 5:33 pm

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

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Totally in awe of my wonderful Husband!

Postby MSH » Wed Feb 10, 2016 10:36 am

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.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Totally in awe of my wonderful Husband!

Postby Ruthus » Wed Feb 10, 2016 11:25 am

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

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Totally in awe of my wonderful Husband!

Postby Ruthus » Wed Feb 10, 2016 11:33 am

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.

Didge
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Joined: Sun Dec 29, 2013 10:35 am

Re: Totally in awe of my wonderful Husband!

Postby Didge » Wed Feb 10, 2016 12:18 pm

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

Proud Wife
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Joined: Sun Jan 17, 2016 9:28 am

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Thu Feb 11, 2016 7:55 pm

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.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Totally in awe of my wonderful Husband!

Postby Ruthus » Thu Feb 11, 2016 8:17 pm

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