Folfirinox- seems to be working!

[nikkis]

Dear all,

Paul had a scan on Friday, after Folfirinox number 7, and have just heard that it looks good. He has a small amount of tumour left after surgery (see previous posts), and there was some in the lymph glands, both of these have shrunk back. His tumour markers have also gone down from 800-1000 to 160. Apart from feeling terrible from the chemo, he generally feels much better, if that makes sense. He has managed to stop his morphine infusion, and the pain is controlled by Abstral tablets. So all really good. Paul, of course, in his positive, determined way, was convinced it could only be good news, while I have been falling apart all weekend!

Still a long way to go though, but just so pleased to be able to pass on some positive news. At times things have looked so bleak for us, and previous scan showed no improvement, but we are fighting back!

Nikki

[InfoForMum]

Nikki, I'm so pleased! A justification for all the pain and discomfort for him. I doubt either of you are jumping up and down with joy as rough is still rough, but that's just fab!!!

Sarah

XXX

[nikkis]

Thanks Sarah,

It's this week for your Mum's scan isn't it? Keeping everything crossed for good news for her,

Nikki

[J_T]

So nice to hear positive stories. So pleased for Paul and you. Brilliant news!

Julia x

[PCUK Nurse Jeni]

Nikki,

Very good news! Well done Paul!

Jeni.

[Bee]

Nikki,

Fantastic news, I am delighted for you. Great to have something positive to read about, onwards and upwards!!

Bee xx

Ps. Perhaps you should get another bell with a different tone and he could summon you with a celebratory tune, lol!

[belgrade]

Brilliant news Nikki, wishing you both well.

Hilary x

[Cathy]

Hi

Just adding my sentiments to the others.

Well done!!!! You must be absolutely delighted.

It is great to hear some good news

Cathy xx

[Brian]

I know how tough Folfirinox can be, so delighted to hear such good news.

Brian

[nikkis]

Thank-you everyone for your kind words, it has meant so much to Paul and I. There has been so much sadness recently, I really wanted some good news of hope for everyone. Credit to Paul's oncologist, who gave him Folfirinox post surgery, which isn't the normal first choice. I also think most wouldn't have taken the risk and given it to him when he was so poorly for the first few sessions, but the gamble seems to be paying off so far.

Paul actually got through his first few days post chemo better this time, and I am sure the good news was a factor. Not so great today though (day 6), diarrhoea with a vengeance. Only 5 more to go though. When we started 12 seemed so many, and 6 months such a long time, but the next session comes round so quickly.

One thing he hasn't had, that I have noticed others have suffered with is mouth problems. He drinks on average 2 bottles a day of Bottle Green, Lemongrass and Ginger. I am spending an absolute fortune on the stuff (possibly more than I do on wine for myself!), so I like to think it has some magic properties that protects his mouth.

And yes, he is still using the bell. Every time I hear it I think I should be in some sort of Downton's maid outfit!

Thinking of you all,

Nikki

[nikkis]

My daughter did a cake sale with her class today to raise money for Pancreatic Cancer UK. A member of staff, who hadn't realised that Paul had PC, told her that she had it 8 years ago and is doing fine. So great to hear of someone who has beaten it, and especially lovely for my daughter who has come home so positive from her day, and they had made £133!

Nikki

[J_T]

Wow that is fab Nikki's, a big round of applause to your daughter! Well done mini Nikki's! xxx

[InfoForMum]

I know what you mean about survivors, it's great to meet them! Well done to your daughter and her class too, great effort!

Funnily enough Mum was her own version of a survivour for someone the other day. She was waiting to start her cycle 5 on Wednesday and was sat next to a really lovely lady who'd just travelled back 70 miles to have her pump disconnected after her first cycle. She was floored when Mum told her how far she was through and they talked through symptoms and symptom control as well as asking to be trained to disconnect pump to avoid all that travel. Apparently she hugged Mum and said she'd made her day.

Mum's now thinking of other ways she can give back.

Still feeling smiley about your great news too Nikki. Feels like corners have been turned for a few folk while still remembering those dealing with loss.

Love and hugs

Sarah

XXX

Edited November 22, 2013 by InfoForMum

[nikkis]

Thank-you Julia,

So proud of both my girls and how they are coping (much better than me!) and any little lift really helps doesn't it?

Nikki

[Bee]

Nikki,

Well done to your girls, I am sure you are a very proud mum!

Children are just so amazing, another setback for us today ( will update thread), but my two took the latest head on!

Have a good weekend

Bee x

[nikkis]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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