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Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

New member...

Postby Veema » Mon Feb 02, 2015 9:47 pm

Hi all

My husband was diagnosed at the end of November with a currently inoperable pancreatic cancer. It was still contained in the pancreas, but was pushing up against the blood vessel that feeds the bowel, so the surgeon wasn't hopeful that she could get it all out. So, the plan is to have 6 cycles of Folforinox and see if that shrinks it away from the blood vessel, with the hope of then being able to remove it surgically. We are going for the 3rd cycle tomorrow and so far he is tolerating it reasonably well...some diarrhoea and tiredness last cycle, but in general it's not going too bad.

I fluctuate between being really positive (because he looks so well at the minute) to being really negative because of everything I read...he's just gone 53 years old and I thought that was young until I read some of the posts on here.

We have an 8 year old daughter and he has two lads from a previous marriage who are in their 20s. We've told them what is happening and they seem to be okay...our daughter does have some mini meltdowns about it, but we're trying to stay positive for her and she knows she can ask anything and we will tell her the truth as far as we can. She has asked the question 'is daddy going to die' and I've told her that although I cannot promise that he won't, that he is doing the best he can and the doctors think he has a good chance. It is her I feel for the most as she absolutely loves her daddy and they do everything together...I just cannot get my head around the fact that he may not be around to see her go to high school, university, give her away or see her children like my dad has for me.

Anyway, suppose that's enough for now...we'll just have to see what the CT scan shows at the end of the 6 cycles and hope and pray that the thing has shrunk...even if it's only shrunk a little away from the blood vessel that will do us.

Thanks for reading

Victoria x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: New member...

Postby J_T » Tue Feb 03, 2015 12:56 am

Hello Victoria and welcome. No-one really wants to be here but we get along just fine anyway :)

Glad to hear your husband is tolerating the Fox well. A lot of people find that side effects get better with each cycle so you should stay positive about. Hopefully it will do the trick and your husband will be operable. Keep us up to date of his progress. This is a good place for all sorts of information and also to let off steam, have a moan and celebrate victories.

It must be especially tough with a youngter to deal with too, but you are doing all the right things.

Best of luck
Julia x

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

Re: New member...

Postby MSH » Tue Feb 03, 2015 12:58 pm

Just to echo Julia, good luck with the treatment. There is a good chance of surgery after the chemo +/- chemoradiation, and it seems to be beneficial to have chemotherapy before surgery.

Best Wishes

Mark

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: New member...

Postby sandraW » Tue Feb 03, 2015 5:06 pm

Hi Victoria, welcome to the forum, thanks for sharing your story with us, glad you husband is feeling well the furry fox is a hard regime but has positive results. As Julia says keep us up to date with your story, we love good news but we also support each other when the news is not so good. take care sandrax

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New member...

Postby Veema » Mon Jul 25, 2016 10:05 pm

Me again...

Wow...such a lot has happened since that first (and only) post...lots of ups and downs.

He had those first 6 cycles of folforinox and they did indeed shrink the tumour sufficiently to make it operable. He had the whipples op in April 2015 and made a totally remarkable recovery...was home just a week after surgery. He continued to do well at home and because tumour had been found in 4 out of 18 lymph nodes, he was given a further 6 cycles of folforinox as a mopping up exercise, which he tolerated well. In September 2015, he finished the chemo and we started to get on with our lives, thinking that Yay!!! he'd cracked it, we were going to be the positive statistic. He had none of the whipple side effects, he can eat more or less anything he wants and as long as he takes his creon, he's fab. Anyway, he had a little back pain late October and so he had a scan...it was back in a line of lymph nodes down the aorta...BOO...nothing to be done, just now continuous chemo...so back on the folforinox just after christmas. After another 6 cycles, the CA19 levels were back down to normal and the lymph node tumours had shrunk...YAY!!! Carry on with the chemo and he's just finished another 6 cycles (24 in total...our oncologist doesn't know anyone else who has tolerated that many), but the most recent scan shows that although the lymph node tumours are the same, he has multiple spots in his lungs...too small to biopsy, but they are pretty sure its the cancer as the CA19 levels are back up. Gutted is an understatement. My heart is broken. You just get to the point where you're plodding along quite nicely and then BAM! back down to rock bottom.

I know we've been really lucky to get this far, but I just think that now it's in the lungs its game over. They're giving him some time off chemo whilst we go on holiday and then another scan at the beginning of September to see how active these lung spots are...then the plan is gemcitabine as the folforinox is clearly now not working.

So...there's my update.

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

Re: New member...

Postby Proud Wife » Tue Jul 26, 2016 12:24 am

Im so very sorry to read your update Veema.

I can totally understand why you would want to go on holiday and think its an excellent idea. However, why the long wait before a 2nd line chemo when it seems to have spread to your husband's lungs? What is the reason why he's not being offered treatment as soon as you are back from holiday?

I wasn't sure whether to even mention this and I so hope you don't think I'm speaking out of place but if your husband is well in himself and coped with folfirinox, then personally I'd want him to keep having treatment without any undue delay. The reason I feel this way is my hubby finished cycle 12 of folfirinox in Dec 15, when his CA19-9 started to rise and the CT scan showed one of the liver mets to be growing yet he was still given a 12 week chemo break. That was the final straw for him. By the time he was put on a 2nd line chemo after a bit of faffing around (not of his chosing) it was too late, the cancer had clearly become too aggressive and he passed less than 8 weeks later. My biggest regret is not pushing for alternative treatment earlier. Whether it would have made any difference, I will never know but at least he would have tried.

I can appreciate why you feel it's game over but your husband has cracked it twice and hopefully he will crack it 3 times, I am only worried that without treatment when there is clearly progression, your husband may not even be well enough to tolerate chemo when the time comes.

However, I am by no means an expert here, I just wanted to share my experience with you.

Good luck xxx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: New member...

Postby Dandygal76 » Tue Jul 26, 2016 7:54 am

Hi Veema, sorry you are both going through this. If you can afford some private treatment then you could look to have ablation of the spots on the lungs which is much more effective whilst the are small. This could work in conjuction with second line chemo. Also, if you look into it and ask PCUK for prof nanoknife name... they will know who I mean, then you send the scan there, you should also get a second opinion on what the lung spots are and perhaps use it to push for quicker treatment. I would also find it frustrating to be playing a waiting game right now. Don't forget it is your right to 2nd opinion on NHS... perhaps a bit of research into some oncologists ahead in their field might assist you. Of course the options given to you may be correct and you might already have an amazing oncologist but a second option could not make things worse for you both. X

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New member...

Postby Veema » Tue Jul 26, 2016 8:24 am

My thoughts exactly...we both said lets get on with it as soon as we're back, but they want to see how fast it's progressing...but what if it then progresses too much??? But in reality, it's only another 2 weeks, so hopefully that won't make too much difference and the spots are so tiny they wouldn't even be able to biopsy them. We're both very much of a mind that we keep battling on. We've managed a really good quality of life over the past 18 months, despite the chemo and surgery...you just seem to get into the routine of it and it scares the life out of me not having it. Doesn't help that our consultant has been on maternity since the beginning of the year, we have just got used to the registrar, but he's now cleared off to (edited-moderator)and we saw someone different yesterday who obviously doesn't know my husband or his fighting spirit or even how we deal with this...he doesn't know we've got a 10 year old daughter who goes into year 6 in September...I just hope her Daddy gets to see her going to high school.

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New member...

Postby Veema » Tue Jul 26, 2016 8:29 am

Dandygal76 wrote:
> Hi Veema, sorry you are both going through this. If you can afford some
> private treatment then you could look to have ablation of the spots on the
> lungs which is much more effective whilst the are small. This could work
> in conjuction with second line chemo. Also, if you look into it and ask
> PCUK for prof nanoknife name... they will know who I mean, then you send
> the scan there, you should also get a second opinion on what the lung spots
> are and perhaps use it to push for quicker treatment. I would also find it
> frustrating to be playing a waiting game right now. Don't forget it is your
> right to 2nd opinion on NHS... perhaps a bit of research into some
> oncologists ahead in their field might assist you. Of course the options
> given to you may be correct and you might already have an amazing
> oncologist but a second option could not make things worse for you both. X

I'm not sure they could do the ablation as there are many, many spots...?

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: New member...

Postby Dandygal76 » Tue Jul 26, 2016 8:48 am

Don't give up Veena... there is still hope and you need to hold onto that. Can I ask how long it was between the last Forfirinox and the scan. I was trying to work it out without asking and from the details in your post but I am not used to the Forfirinox cycle. Try and enjoy your holiday and the break and use it to regroup for the fight ahead... some people do have really good responses to Germcitabine and there is no reason right now to think your husband will not respond well to the treatment. x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: New member...

Postby Dandygal76 » Tue Jul 26, 2016 8:51 am

If you can get hold of the scan and send to it prof Nanoknife PA (you can find it easily online) and the prof took a look at dads and came back within a day to tell us he was suitable and to book a consultation. It was that easy to find out and I am unsure how many would be too many to be honest. I hope that helps. x

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New member...

Postby Veema » Tue Jul 26, 2016 8:57 am

He had the scan before he finished the folforinox...he was due to start the next cycle of 6 last thursday, but they cancelled that because they wanted to talk to us about the scan result...so we stewed on it all weekend...so the last folforinox he had was 7th July, we should have had last thursdays and then a break to go on holiday, so by the time we get back and get back into a chemo routine he would have missed 3 cycles of folforinox if that was the way we were continuing.

I don't know what to make of it...we always get the **** (post edited by Moderator)news before christmas or holidays...we think that's it and then he rallies and just gets on with it. Luckily, he is generally very well and you wouldn't think there was anything wrong with him, like I said, we live a normalish life. I'm just fed up of having this ever growing knot in my stomach. Think I'll go to the doctor and get some 'don't give a ****' pills (post edited by Moderator)...managed thus far without them, but it's getting too much.

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

Re: New member...

Postby Proud Wife » Tue Jul 26, 2016 11:25 am

I was in exactly the same boat as you Veema and my lovely GP prescribed me Sertraline which oh my word helped! She upped my dose about 4 weeks before my husband passed which I'm sure has helped me cope. There's nothing to be ashamed off and it's not a sign of weakness to say hey I need some help here. Its blinking understandable after what you've been through.

I really and truly don't want to make you worry any more than you are already worrying but I just have to speak from personal experience. After all, it's what this forum is all about. My hubby breezed through folfirinox - we even managed holidays between each cycle by having chemo every 3 weeks rather than 2.

As I said, towards then end of the 12 cycles, we could see his CA19-9 and CEA markers increasing every so slightly but then his were very low to begin with - CA19-9 was something like 107 on diagnosis and about only 280 at the end but his oncologist decided further treatment should wait. This is the key issue here and I would hate for you to make the same mistake.

His last cycle of folfirinox was around 7 January this year. Gemicitabane and abraxane was started around the middle of April - he had 2 of the 3 full doses that make up one cycle and the 3rd one on day 15 was without the abraxane as hubby had become poorly. I don't know if it was the gem/abrax that finished him off or the disease progression but it did absolutely nothing for him because I think, and I stress "I" because I'm not a medical professional, hubby was left too long without treatment and the cancer was allowed to take over.

We were exactly the same, people would look at hubby and wonder how he could be so ill when he looked so well, until about the last 6 weeks when we fell into a downwards spiral.

I hope I don't cause you additional anguish by saying what I'm saying but if it helps your hubby then something positive will come out of my hubbys own experience.

All the best
PW xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New member...

Postby Veema » Tue Jul 26, 2016 2:01 pm

Dandygal76 wrote:
> If you can get hold of the scan and send to it prof Nanoknife PA (you can
> find it easily online) and the prof took a look at dads and came back
> within a day to tell us he was suitable and to book a consultation. It was
> that easy to find out and I am unsure how many would be too many to be
> honest. I hope that helps. x

From what I know about nanoknife from the bit if research I did right at the beginning, don't they have to put the needle into the tumours and then blast it...if the spots are too small to biopsy wouldn't they be too small you nanoknife?

Feeling rotten today. Just trying you get some travel insurance for him and it's a nightmare...last year it wasn't metastic which seems to be what's causing the issue now. He's prepared to wing it...I am not.

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

Re: New member...

Postby Proud Wife » Tue Jul 26, 2016 2:07 pm

I can't comment on nanoknife I'm afraid as I know nothing about it but I don't think you will be able to get travel insurance I'm afraid. We holiday-ed without. We just made sure we kept to Europe and had our E111's to hand and didn't book too far in advance. We were lucky and didn't need medical assistance whilst away.

Where are you thinking of going? xx