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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Fri Feb 12, 2016 8:48 pm

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

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

Re: Totally in awe of my wonderful Husband!

Postby Ruthus » Fri Feb 12, 2016 9:38 pm

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

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 » Sat Feb 13, 2016 12:34 pm

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

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

Re: Totally in awe of my wonderful Husband!

Postby Ruthus » Sun Feb 14, 2016 11:01 am

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!

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Feb 14, 2016 7:51 pm

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

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 » Fri Feb 19, 2016 1:42 pm

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.

PCUK Nurse Dianne
Posts: 303
Joined: Tue Aug 14, 2012 3:29 pm

Re: Totally in awe of my wonderful Husband!

Postby PCUK Nurse Dianne » Fri Feb 19, 2016 4:07 pm

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Totally in awe of my wonderful Husband!

Postby Wife&Mum » Fri Feb 19, 2016 7:07 pm

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

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 » Sun Feb 21, 2016 10:03 am

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

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Totally in awe of my wonderful Husband!

Postby boa » Sun Feb 21, 2016 3:58 pm

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

Proud Wife
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Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Sun Feb 21, 2016 5:17 pm

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

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

Re: Totally in awe of my wonderful Husband!

Postby Didge » Mon Feb 22, 2016 1:07 am

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

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

Re: Totally in awe of my wonderful Husband!

Postby Proud Wife » Mon Feb 22, 2016 10:04 am

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

shelda
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Joined: Thu Feb 04, 2016 11:41 pm

Re: Totally in awe of my wonderful Husband!

Postby shelda » Tue Feb 23, 2016 1:07 am

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

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

Re: Totally in awe of my wonderful Husband!

Postby Didge » Tue Feb 23, 2016 12:58 pm

Hi Pw, granddaughter is fine thanks x