A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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kate2101
Posts: 37
Joined: Fri Jun 15, 2018 4:20 pm

Re: Battling to get treament

Postby kate2101 » Tue Jul 03, 2018 3:31 pm

Hi Jeni and toodotty

Back from meeting with oncologist, agreed to folfirinox, no specific date yet but probably 2 weeks. Although a very nice doctor, I came away full of gloom although no more bad news, diagnosis unchanged. Told in no uncertain terms if I don’t get on with folfirinox NHS won’t fund softer chemo. Agree toodotty, dead man walking syndrome too prevalent, what happened to hope?

I can picture you in this baking heat in your ‘disguise’, hope you made it away with some nice pickings!

Must get on my exercise bike too, once I’ve moved all the washing off it, it’s a brilliant clothes airer! :D

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Battling to get treament

Postby Proud Wife » Tue Jul 03, 2018 4:59 pm

Hello Ladies

I've just updated myself with all your news and am in awe of you both! I'm not sure if you are aware but you can ask admin to pass your contact details to one another if you want to have a more personal chat off forum. I'm only sorry there's not that many forum family members on here at the moment to support you both along the way but there seems to have been bit of a gap of new members posting in the past months so consequently, it's very quiet on here. It doesn't mean that we care any less about you though and I send nothing but best wishes for you both to quash that dreadful dead man walking syndrome and to give PC the bashing it so deserves.

Toodotty, my husband was treated under private medical insurance. I have to be honest and say the quality of care that he received was probably worse than most of the NHS (I believe the bare minimum was done for him by his oncologist) but.....access to the latest drugs and having treatment within a week of diagnosis was a benefit. I hope the fact that you had to stop your cover is not playing on your mind too much xxx

PCUK Nurse Rachel R
Posts: 18
Joined: Thu Jan 25, 2018 10:52 am

Re: Battling to get treament

Postby PCUK Nurse Rachel R » Tue Jul 03, 2018 5:07 pm

Hi there kate2101

It’s Rachel here, I’m one of the other Nurses on the support line.

I am glad to hear that you have now been seen by Oncology and that you have opted for folfirinox. We know that this regime is difficult to tolerate but is also showing us the best results in terms of outcome.

I can appreciate that you felt disheartened after your appointment. Often Oncologists have the difficult task of talking about chemotherapy regimens that are tough to tolerate and are unable to give guarantees in relation to their success. Sometimes it is difficult to get the right balance in these conversations. Only earlier today one of our colleagues was highlighting the importance of hope in the midst of treating cancer and the positive impact that this can have.

In terms of having to pay for a less difficult to tolerate chemotherapy type, this is not correct. Certainly we have clear guidance in terms of second line chemotherapy treatment that should be available free of charge on the NHS. If you did wish to pick up this discussion further then please don’t hesitate to contact us – details are below on the signature.

With kind wishes,

Rachel
Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

kate2101
Posts: 37
Joined: Fri Jun 15, 2018 4:20 pm

Re: Battling to get treament

Postby kate2101 » Tue Jul 03, 2018 11:19 pm

Hi all

Nothing like an exciting game of footy with the family to take your mind off things!

Thank you proud wife for your lovely comments, toodotty...happy to chat off forum if you’d like to.

Thank you Rachel too. Another ‘disappointment’ with today’s oncology meeting, I called my designated specialist nurse yesterday as my daughter wanted to come with my husband and myself. We only broke the news to her Friday as she’s been in London on a placement with uni. I explained she was still reeling a bit and asked if meeting could concentrate on next step treatment and not long term prognosis. I’m fully aware of what could lie ahead but don’t want to worry her too much at this stage. No problem I was assured. Specialist nurse couldn’t attend but promised to have a word and preempt the situation. The 3 chemo options were explained to me but unfortunately the words ‘if you go down the folfirinox route it could give you an extra 5/6 months’. Needless to say she was in pieces again.

Fortunately my older son and wife are here for a couple of days. My daughter in law is Turkish, her father has survived radical surgery for prostate cancer, a close family friend has just been given good news re Lymphoma and skin cancer and best of all, another family friend is 2 years down the line with stage 4 pancreatic which had spread to liver and stomach, also had op. Needless to say I will be getting more info on last case. I know there is no miracle cure but once again, a glimmer of hope makes life bearable. Who knows what’s round the corner, good or bad. I intend to be here as long as possible and a person living with cancer not dying from cancer.

Lovely to know someone is there if I need a rant!

Thank you all x

toodotty
Posts: 83
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Wed Jul 11, 2018 5:19 pm

Hi All,
Met with my lovely GP yesterday who is constantly uplifting. I have talked to her about Nanoknife and Heidelberg and she is prepared to put a case forward to her PCT to see if there is some funding available. She has also said that I am the first "younger" PC patient that she has had to deal with and the first one to complain about the level of treatment available. It has "opened her eyes" as to how inadequate the NHS is in dealing with PC compared with the rest of the world and she is on a campaign to spread the message to her peers about this terrible situation; they are equally shocked.
Off to see Dr Doom tomorrow and gearing up for Round 5 Folfirinox on Friday. I have had virtually no pain since the last treatment so hoping for more progress. I have also discovered unpasturised sauerkraut which seems to be helping a bit with the bloating and constipation.

Keep on rocking!

toodotty

kate2101
Posts: 37
Joined: Fri Jun 15, 2018 4:20 pm

Re: Battling to get treament

Postby kate2101 » Wed Jul 11, 2018 7:56 pm

Hi toodotty

Your GP sounds brilliant, makes such a difference. Good luck with NanoKnife and Heidelberg, please keep us posted.

Saw my Dr Doom today and have my first Folfirinox tomorrow. Scared but looking forward to getting things underway. My night pain has got worse recently and energy plummeting. I’ve been prescribed morphine so hope I won’t be pacing up and down at 4am again.

Unpasturised sauerkraut sounds awful but I might give it a try.

Anyway, 1-0 at halftime, miracles can happen! 😀

PCUK Nurse Jeni
Posts: 1015
Joined: Mon Jun 14, 2010 1:30 pm

Re: Battling to get treament

Postby PCUK Nurse Jeni » Thu Jul 12, 2018 4:58 pm

Hello Toodotty and Kate,

Firstly Kate, the footy was sad for England, but they have done themselves and the whole country proud! They gave us all a wonderful and entertaining time, and I am sure for some of you folks on here, something else to focus on, albeit, momentarily.

Toodotty, your gp sounds absolutely amazing - just the sort of gp that you need. If we can help in any way, by providing resources, or if she is interested in the APPG for pancreatic cancer, please do let us know.

Kate, possibly by now you will have had your chemo - i hope that it went well, and more so, that the next few days don't bring too many side effects.

You are both inspirational.

Take care,

Jeni.
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Battling to get treament

Postby Proud Wife » Thu Jul 12, 2018 5:52 pm

Ditto Jeni's words regarding our incredible English squad. Such a pity but they did us proud!

And double ditto Jeni's comment that you are both inspirational. You sure are.

Kate, hope today's chemo went ok? Perhaps you would like to start your own thread so that we can support you? Fingers crossed your pain subsides quickly. My husband's did after he started folfirinox.

Toodotty, good luck for tomorrow round 5. Massive shout out to your GP. That's great that she wants to be so proactive.

Keep us posted xxx

toodotty
Posts: 83
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Thu Jul 12, 2018 7:24 pm

Hi All,
Saw my lovely GP this week who was delighted at how well I was looking. Since being diagnosed with PC she has been an absolute stalwart for me and this week admitted to being totally horrified at how badly PC sufferers are treated. She admitted that her other PC patients were elderly and had many other complicated issues which gave them little chance, but she assumed that given my age and fitness levels that I would be offered the best possible treatment available and this would be equivalent to what is available in other developed countries. A bit of research by her has highlighted that this is not the case and she is quite disgusted about this. She has been busy raising awareness with her peers and has even offered to put a case to the PCT for funding for treatment such as Nanoknife, obviously no guarantees, but she wants to wake up the medical profession to the inadequacies of NICE when dealing with PC.
Also saw Dr Doom today who was actually quite cheerful for once. He is happy with my progress, jaundice levels are still dropping and other tests are fine too. He has booked me in for round 5 & 6 of Folfirinox, also a CT scan and we will meet again on the 9th August for review. At last I have had 2 weeks almost pain free, though I am still chomping my way through a vegan diet. Just as well is seems to have become fashionable and there are good ready meals available.
(post edited - moderator)
toodotty

toodotty
Posts: 83
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Sat Jul 14, 2018 5:28 pm

Round 5 Folfirinox,
Saw Dr Doom last Thursday and for once he seemed a bit more upbeat. The bilirubin levels have now dropped down from 39 to 20 in two weeks, probably the 6 pints of squash I am forcing down me everyday, and I am feeling so much better.
Round 4 Folfirinox had killed off the pain so and this has continued into Round 5. The lovely ladies at the hospital yesterday got me in and out within 5 hours, need to send them a Record Breakers card because this was quite amazing. There were also the same two nurses who treated me the last time so it made is so much easier for them and me regarding continuity of care. I now have the nick name of the "polite vomiter", because last time I was massively sick but made no noise at all! This time they gave me an anti-sickness injection which put pay to the problem, but I do get a bit hot and sweaty when they hook me up to the second round of drugs so I turn over and sleep through this bit.
I was so well for this round 5 treatment that I was able to drive myself the 45 minutes to the hospital and check myself in. I rang my husband as they hooked me up for the 2nd set of drugs as he was cycling over to pick me up, with time for a short pub stop on the way for him of course. This gives him back some of "his time", I am quite happy in hospital with my Amazon Fire listening to my audible books (shuts out the less polite vomiters and all the beeping!) and playing various games.
So one more round to go, I have agreed that I will see the oncologist next after round 6 and once the CT scan results are back. So next two weeks, I will spend getting up to speed on Nanoknife surgery and the Heidelberg options.
Everyone is amazed at how well I am coping with the treatment, my advice eat as well as you possible can. I am almost vegan because my body doesn't want animal products at the moment, and there are some fabulous ready meals now available at good prices. Also don't forget to exercise, some of the weight loss will be due to loss of muscle tone, even if it is only step ups three times a day to keep your strength up. And finally drink as much fluid as you possibly can cope with to flush out the chemo as fast as possible reducing the side effects.
My quote for today, picked up from another forum "We are each our own statistic". (Meaning, we each have a unique genetic makeup, a unique cancer and each a unique determination and outlook. One size therefore does not fit all).

toodotty
xxx

PS I have discovered stylish hats, never a bad hair day again! :D

toodotty
Posts: 83
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Sat Jul 14, 2018 6:10 pm

Hi again all,
Sorry if I seem to be repeating myself and not replying but the forum is a bit reluctant to update itself and I have just picked through a whole raft of replies that I haven't seen before.
Firstly, what I am going to exercise to now that the footie is over. 45 mins = 10 miles, I will now have to find something else, (hopefully more riveting than some of the games), and yes England did do well but looked like they ran out of steam at the end.
Re Dr Dooms and statistics : half of all patients diagnosed with Stage 4 PC will not survive for more than 4 months; half of all patients diagnosed with Stage 4 PC are aged 75+ and usually have complex medical needs. I therefore conclude that most of the poor people who do not survive more than 4 months are likely to be aged 75 and over, a group which happily I do not belong too. So I must therefore have a better chance. I was also advised that Folfirinox only works for 30% of patients, I am in the lucky 30% and working hard to stay there. There is plenty of evidence out there of S4 PC patients who live for much longer than the threatened timescales, 50% survive more than 4 months. The chap who set up the Nanoknife warriors lived for 4 precious years, he was 44 with 3 small children.
"we are each our own statistic"
toodotty

toodotty
Posts: 83
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Sat Jul 28, 2018 7:40 pm

Hi All,
Serves my right for being so smug about how well I had been feeling, it all caught up with me on Thursday. After a great week, I woke Thursday morning with a headache, thanks to the unbearable heat, by Thursday afternoon this turned to a raging temperate (38.5 and rising) and shivers, I was under the duvet wearing a bobble hat. Took 2 paracetamol and it brought the temperate down but I felt completely done in for the rest of the day. Oddly, the same happened the day before my round 5 chemo but I put it down to a tummy bug. Obviously had to keep a really close eye on things as it could signal a serious infection, but I was fine by Friday morning and was able to take myself to the hospital. I spoke to my cancer nurse and said that it may be related to the bilary stent so we need to keep a close eye on it.
Round 6 has now gone through, just about. Had over a two and a half hour wait before they hooked me up yesterday which wasn't ideal (again). There was further confusion over my drugs to take home and another long wait for this to be sorted. So I was in a sweltering hot ward from 9.30 until 6.30 for treatment that could have seen me out in 5 hours. I am amazed that I didn't faint as it was not possible to open the windows and there was no air-con or a fan within reach of me.
So, what next? I am actively following up the Nanoknife option which I will post under a separate topic. So look out for this appearing shortly.
Meanwhile, I am in hyper-steroid mode, so getting loads of stuff done, but expect the kick back on Tuesday/Wednesday when lack of sleep will catch up with me! Hey ho.

Keep positive everyone,

toodotty

xx

kate2101
Posts: 37
Joined: Fri Jun 15, 2018 4:20 pm

Re: Battling to get treament

Postby kate2101 » Sun Jul 29, 2018 8:58 am

Hi

Sorry you had a bad Thursday but so pleased you managed your treatment although it sounds like a nightmare day!

Had my round two and so far so good, better than one and nausea under control thank goodness. No doubt dip after steroids but a day at a time.

Looking forward to your NanoKnife investigations, be wonderful if this is a route you can follow, everything i’ve read about it sounds promising. What are your feelings about Heidelberg? Can they offer us stage 4 sufferers more than the UK?

Must get back on my exercise bike, my bum has almost disappeared. Also bingo wings! Have some hand weights that I’ve started using, can’t believe how quickly muscles vanish!

Stay positive! xx

toodotty
Posts: 83
Joined: Sat Jun 09, 2018 4:17 pm

Re: Battling to get treament

Postby toodotty » Sun Jul 29, 2018 1:46 pm

Hi Kate2101,
Glad your round 2 was better and it sounds as though it is already having benefits which is great. I lost most of my hair on this round, it sort of melted and all stuck together when I had a shower and we had to cut it off. It was quite long and thick and to use my husband's words "it looks like someone has skinned a Labrador", there was so much hair. I now belong to the Billy Ballie style of hairdressing, wispy bits on the end but not much on top! Can get away with hats otherwise I look a bit scary.
Re exercise bike, take it easy and listen to your body. I can't use mine the first week, I just do step ups on the bottom step to help with muscle wastage and then start off slowly the second week. I do have a heart monitor on mine which I use to gauge how my body feels about it, this is a good indicator as to whether it is OK to continue, but also encouraging as to how quickly I recover.
Re Nanoknife v Heidelberg Whipple option I will post this on separate threads as I have been doing a lot of research into one versus the other.

toodooty

patrigib
Posts: 41
Joined: Sat Mar 05, 2016 7:53 pm

Re: Battling to get treament

Postby patrigib » Mon Jul 30, 2018 10:02 pm

Just to give hope : my husband, now 75 was diagnosed stage 4 on 3rd Sept. 2014. He only has had chemo, and still alive, although very tired.
Statistics are what they are....