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nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Fri Nov 22, 2013 10:29 pm

Oh Bee,
Gutted to hear you have had a setback, you really don't deserve that. It just seems to work being honest and upfront with our children doesn't it, they just deal with it all?
Take care,
Nikki

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Sun Dec 29, 2013 3:58 pm

Hi All,
The physical and mental pain of this disease is just so unbearable. Christmas has been so tough, as I am sure it has been for most of you out there.

Paul and I were getting unclear, mixed messages from his oncologist, so decided just before Christmas to make him sit down and talk to us and answer all our questions. He is considered a genius, but in common with a lot of clever people his communication skills are rather lacking and we definitely felt he was avoiding us.

The result was that he said that he admitted tumour's shrinkage was negligible, and he was concerned that the lymph glands were still enlarged, including some in Paul's chest, which is not normally somewhere you see enlarged lymphs in a patient with pancreatic cancer. He felt Paul's best option was to complete his current course of 12 Folifinox (he has had 10)and then perhaps have another 6 as this was at least stabilising the cancer. Paul had surgery prior to this, but they were unable to remove all the tumour, and he said they would never be able to remove the rest of his cancer, whereas we had always been lead to believe they would. He didn't believe that Paul will get any better than currently is, not great as he is still weak and suffers from a lot of pain.

Paul was absolutely devastated, as he really thought he would get better and get his life pretty much back. The oncologist admitted that he should have been more honest earlier, "but found these things difficult", wish now I had suggested trying living with pancreatic cancer if he wants to know what difficult is! I wasn't surprised, I always fear the worse, but not having hope left is so hard.

We still think that giving folfirinox a go gave Paul the best chance, but don't think we want to carry on beyond the 12 sessions when it makes him feel so lousy. Have decided that we will get a second opinion, with a view to changing to a less harsh chemo, and our lovely GP was ringing round on Christmas Eve, finding out who was the best person to see.

I love my husband so much, and the though of him not being around is unbearable, but at the same time I will do everything in my power to make sure he doesn't suffer anymore. Yesterday he was admitted to the local hospice for a few days to get his pain sorted out, and they have been fabulous, and I wish now we had pushed for him to go in before Christmas. Paul still wants the last 2 folfirinox, and although I'm not keen it is his choice.

I just feel that we have had the worst of every possible scenario. Paul has been in pain and feeling rough most of the time since his surgery in May, and we have been robbed of any quality family time together this year or probably ever.

Not sure if this all makes sense, sorry if it doesn't, but it helps telling people that understand,

Nikki

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Folfirinox- seems to be working!

Postby Cathy » Sun Dec 29, 2013 5:56 pm

Hi Nikki

I am really shocked! How on earth does your oncologist justify not giving you important information about Paul's health as he finds it a bit awkward?? It really does make you worry doesn't it??

I completely empathise with how you are feeling. I don't know that you can be sure that Paul might not feel better in future with a change in chemo regime. They all work differently and a different regime would at least mean Paul wouldn't have the side effects that folfironox gives (Jonathan also had this). Also, it was only after his (Jonathan's) last session of folfironox that a CT scan showed a reduction whereas previous had shown stabilisation.

The hospice was a great idea. I am sure that they will sort Paul's meds out and he can look forward to a much better quality of life after. I will cross my fingers (and everything else) for you. Do let us know how he gets on.

Take care

Cathy xxx

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

Re: Folfirinox- seems to be working!

Postby J_T » Sun Dec 29, 2013 6:21 pm

Hi Nikki, like Cathy, and not surprisingly, I can empathise entirely.

I sometimes think the mental side of it can be worse than the physical.

Ray, too, was never really well throughout the process. We had some lovely days but not able to walk very far and certainly not able to go on holidays like a lot of the others.

I know too what you mean about hope fading but Cathy is right, things can easily turn around, even if it means for a short while I'm sure you'd both be happy to grab any opportunity to make Paul feel well again and I sincerely hope this will be the case for you.

You will be feeling exhausted, so take time to look after yourself too, but I know how hard it is, our loved one is always the priority.

Love to you both
Julia x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Sun Dec 29, 2013 7:03 pm

Thank-you Cathy and Julia,
Since we spoke to the oncologist I have been debating about posting, not sure if it would help, but just knowing that there are people out there that don't know us, but care does really helps,
Love,
Nikki

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Folfirinox- seems to be working!

Postby Bee » Sun Dec 29, 2013 9:06 pm

Hi Nikki,
I am sorry you are having such a difficult time and I hope the hospice can help,with Paul's pain. As others have said it is so hard and mental torture going through this. All I can echo is grab the positive moments when they happen, we were so fortunate that chris remained really well through his treatment, and although the deterioration was a sudden event and chris went to the hospice for his last days we still made some more memories in that time. We kept a book in those final two weeks of the funny things that were said, I am so glad we did.
When chris was ill I took life one day at a time, the last two weeks were hour by hour and I am still doing exactly that.
Look after yourself, eat, try and sleep and use all the support. I know you know that but it's good to be reminded.
Am on Facebook if you want to chat or you can get my email from the nurses.

Take care

Bee xx

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Folfirinox- seems to be working!

Postby InfoForMum » Sun Dec 29, 2013 10:59 pm

Nikki sweetheart, I wish you'd posted earlier. I'm so sorry you and he have been dealing with all this and feeling so low and alone. What a horrible thing to have that gut clenching feeling of needing to know and yet not really wanting to then getting the news you no doubt considered a possibility, but hoped against hope wasn't the news.

Another big fork in the road for you guys to try and assimilate into daily life. It is so harsh and I feel so badly for you. Don't stop coming on here to share and I hope the deep expertise in pain control the hospice can offer will give Paul some control back over his daily state of health. If I can be of any help, do let me know.

Mum and I are down in London on the 3rd for a pre-op consultation at Pricess Grace and back again on the 7th ready for the procedure on the 8th then staying til the afternoon of the 10th. I know it's highly unlikely you'll be in the city then, but if you are do let me know and maybe we can grab a coffee.

Thinking of you both m'dear and hoping there's a new path you both find that makes putting one foot in front of the other bearable and brings some good days back.

Hugs

Sarah
XXX

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Sun Dec 29, 2013 11:18 pm

Thank-you Bee,
Knowing that others know what this feels like does ease the pain a little and I have come home this evening feeling a little less anxious. It has been easier since Paul went into the hospice, as they are so good at getting the pain under control, and this evening we have been laughing and joking with the nurses which has been lovely. I also had a very good roast dinner there today, so no worries about my not eating. Have closed my facebook account as my teenage daughters were too competitive comparing how many friends they had compared to me, but thank-you will get your email address at some point.

Hope your Christmas was bearable and your children are ok.

Thank-you too Sarah, your words are a comfort,
I was quite excited for a minute about a coffee as we are in London next week, but when I checked it's the 2nd. Hope it all goes well for your Mum.

I read a quote from Tolstoy today that I thought was comforting,(I'm not highbrow, just found it on a leaflet in the hospice!)-
"Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them", really like to think that is true.
Love,
Nikki

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Fri Jan 03, 2014 12:15 pm

Hi all,
Thought I would update on our new plan. We have seen Paul's oncologist, and he has realised he has handled our situation badly,and was suitably contrite. He feels that as Paul has more pain and distension, that the scans may not be giving a true picture (they show no change), and the disease may be progressing despite the folfirinox. So we have agreed to try gemcitabine and abraxane and he was fairly confident that he can get the insurance company to fund it. So plan is to give that a go for perhaps 3 cycles, see if he is any better and rescan and then review.

Always good to have a plan, not perhaps expecting any miracles, but we are hoping that Paul can be more active again, and we can have more good days than we are having now,

Nikki

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

Re: Folfirinox- seems to be working!

Postby J_T » Fri Jan 03, 2014 1:48 pm

Hi Nikki so pleased to hear your onc is having a rethink!

I wish you all the best going forward. I do hesitate to say this, but be prepared for the Abraxane to be refused. We wanted to go this route but our onc couldn't get its use sanctioned by the powers that be, even though we would have paid for it privately.

I do hope you have better luck.

Julia x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Fri Jan 03, 2014 3:38 pm

Thanks Julia,
When he mentioned the Abraxane I remembered you saying you couldn't get funding, and I think he was surprised that I knew this could be a problem, but he has got it funded in the past. We will see. This forum can really make it seem that you know what you are talking about!
Nikki

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

Re: Folfirinox- seems to be working!

Postby J_T » Fri Jan 03, 2014 6:15 pm

Indeed nikki!

It wasn't that we couldn't get funding, we'd have paid. The authority wouldn't authorise its use, the argument being that Ray may have been sat next to someone not getting the same drugs (unlikely at our unit) and taking umbrage because we could afford to pay and they couldn't.

Life ain't fair, as we very well know.

x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Fri Jan 03, 2014 6:49 pm

I suspect they make the rules up as they go along Julia.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Folfirinox- seems to be working!

Postby Cathy » Fri Jan 03, 2014 9:21 pm

Hi Nikki

I am so pleased to hear that the hospice is working out well for Paul. A very welcome relief I imagine.

I also, of course, dearly hope that the new chemo regime works well. It sounds a promising prospect so lets hope so and that there aren't any hurdles to Paul having it.

Cathy xxx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Folfirinox- seems to be working!

Postby nikkis » Fri Jan 03, 2014 9:43 pm

Thanks Cathy, we are all having such difficult journeys.

For anyone reading this who feels anxious about getting help from their hospice I can not rate them highly enough, they really put us back in control.

Nikki