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

Re: Cycle 3 Folfirinox - Dose Reduced and Worried

Postby Cathy » Thu Oct 24, 2013 4:05 pm

Hi Sarah,

I'm afraid I'm not posting with an answer for you as I'm not sure other than asking for a second opinion (which might delay things?), talking to PALs, or perhaps (I always recomend this) asking the nurses here.


I do know that it is not unusual to alter the dosage in Folfironox to try to mitigate side effects although I think this is done normally in a paliative setting. Jonathan had irinotecan reduced after his 1st infusion and the oxaliplatin was removed entirely in the last cycle. I was concerned about both of these but, at least in the latter example, probably a good thing due to his on-going issue with numbness and tingling. We were also advised that, with the irinotecan, a larger dose for Jonathan wouldn't make any difference.

Normally with chemotherapy the side effects are cumulative and possibly your consultant has that in mind but, even so, ought to be able to discuss that with your Mum as s/he should if they feel that the dosage is correct and that there is nothing to be gained by increasing it.

I would give the nurses here a ring I think if I were you just to sound them out.

Good luck

Cathy xx

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Cycle 3 Folfirinox - Dose Reduced and Worried

Postby KATB » Thu Oct 24, 2013 4:16 pm

Hi Sarah,

As Cathy says the dose reduction is usually due to side effects. Since treatment with FOLFIRINOX is not with curative intent, quality of life is a big consideration and I suppose if you relayed all of details regarding the diarrhea to the oncologist that is possibly why there has been a reduction.

However, I am astounded that the oncologist refuses to discuss her decisions! How utterly ridiculous! To refuse to discuss with you is also bizarre. I found the opposite and both dad's oncologist and GP were more than happy to speak to me, either with dad present or not, with dad's consent (which he gave right at the beginning).

Talking to patients, giving reassurance and helping them to understand the decisions that are made is as important as giving the treatment itself. I am really staggered that an oncologist doesn't know this.

I'm not sure what you could do about it - is there anyone more senior you can make a complaint to?

K
x

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

Re: Cycle 3 Folfirinox - Dose Reduced and Worried

Postby InfoForMum » Thu Oct 24, 2013 7:55 pm

Thank you for the quick and sensible replies Cathy and Kate. I've also had a chat with the wonderful Jeni and between you you've calmed me down. I now understand there's a points scoring system for different severities of the various symptoms. There are guidelines for a given score for whether dosage should be reduced (and what to), elements of chemo left out, a break should be taken or treatment ceased. Then clinical judgement is applied based ont he specific situation for that patient.

In terms of Mum's symptoms we both suspected the reports that made their way back to her Dr were exagerated (I called when she didn't think the second dose of Loperamide was going to work, but she was up and about within 30mins). She only ever had 2 instances of 40 horse power diarrhoea). She's now put her questions about this into an email and sent it to her consultant and just a minute ago got a reply saying her consultant will ring tomorrow. That's positive news so will reserve judgement until she lets me know how that goes.

I've kept myself very much out of the mix as I think I queered the pitch at our first consultation where it was clear she thought i was being too pushy and possibly trying to push Mum beyond her comfort zone. I wasn't and our other consultants grasped our relationship quickly, but it's very hard to put that first impression back in the box.

Kate, I'm so glad you had that relationship with your Dad's doctors. It's how it should be. If our communication problems don't sort themselves out we may request a referral, but it's a toughee when our onc is one of/the most senior in that hospital and there seems to be wariness of challenging her.

Having said that, chin is up again and will keep you posted. It's very kind of you both to indulge my tizzies!

Sarah

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

Cycle 3 Folfirinox - Half Way There!

Postby InfoForMum » Mon Oct 28, 2013 11:48 pm

Good news after the convo with her consultant. Very much put Mum's mind at rest as her concerns about the reduced dosage were taken very seriously. To the extent that her onc was chatting about her difficulties making dosage decisions when many studies don't include research on varying dose and related changes in toxicity and effectiveness. Looks like keeping myself out of it worked!

Plan now is to wait for this cycle bloods and if all well revert to previous dosage, then for last 2 (again depending on bloods and symptoms) look at going to standard starting dose. That buoyed mum up loads and should work out as her bloods at end of last cycle were described as "excellent" by both her consultant and specialist nurse. Her liver function tests actually improved and get this folks..her Bilirubin...8!!!! A big thanks again to those that helped her get through her jaundice and post stent concerns with their excellent advice!

With that increase in dose now a possibility she's thinking 2 beefy doses for the last two are worth the risk as even if she has a break cos of increased symptoms between 4 & 5 the last one will smack the wee b*st**d hard before she breaks to recover for chemo/radiotherapy.

Big date for our diaries is the mid cycle scan on the 12th.

So far with cycle 3 - Usual tingling/throat sensitivity to cold from day 1. Taste very affected this cycle (low appetite, low taste, dry mouth), but eating Ok. Nausea not a problem again (thank goodness for that antiemetic swap). Hyper and hilarious on steroids days 1, 2 and 3, but very tired day 5 and today, day 6. Appetite back a bit tonight. A wee bit of hair loss in last couple of days, but as hers is short it's not noticable.

Thinking tonight of Steve and his upcoming op and of all those dealing with the aftermath of funerals. Lots of love to you all.

Take care

Sarah
XXX

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

Finally allowed to disconnect own pump

Postby InfoForMum » Tue Oct 29, 2013 12:28 am

I forgot to add this to the last post, but for those who've supported me with my fight over lack of district nursing support, it's a win I wanted to share.

Still no joy with district nurses, but they've trained me and Mum to disconnect her pump and flush her hickman line at home :D Saves her 20 mile round trip for pump disconnection and another for mid cycle line flush and we're both chuffed to bits.

It's not something our particular hospital normally lets patients or carers do at home (although many many on here were trained with no fuss at other hospitals). An impression backed up by all the stares my bucket got as I left the hospital (big yellow, purple lidded toxic disposal bin in case you were wondering). Dunno whether they thought I was trying to steal toxic waste for some unfathomable reason. Luckily we have an excellent specialist nurse who spotted the psychological difference this would make and who knew I was not going to screw it up.

The only slightly disconcerting thing for Mum was having me disconnect her pump and flush her line while my 4 and 7 year old were there. I tried to shuffle them off to watch TV, but they decided Grandma's central line was more exciting, so with her permission they watched. Far from being weirded out by it they were fascinated. At one point I thought my 4 year old had got squeamish, but turned out she'd disappeared to find a comfier viewing chair and she was distraught when she arrived back and I'd finished!

Apparently I got a 10 for confidence and a 9.0 for technique (would have been a 10, but i forgot to close the clip after putting the saline in, thankfully spotted by Mum).

So another small victory and we need as many of those as we can get.

Sarah
XXX

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Cycle 3 Folfirinox - Half Way There!

Postby cestrian » Tue Oct 29, 2013 9:49 am

Well done Sarah - these bloody Post Code lotteries that dictate what is available will be the death of me if the PC doesn't get me first. It seems to affect every phase of the treatment that patients receive from diagnosis to final palliative care and in a National Health system this is just not right but sadly no one in power seems to care. None of this relates to my own experience as I have received top class care throughout - my whole point is why this is not universal throughout the country!

Where would some on here be without the support of this group and the persistence of those like you who are prepared to stand up for your Mum's best interests? Well done my lovely and top marks.

Love and Peace

Mike

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Cycle 3 Folfirinox - Half Way There!

Postby davidandsam » Tue Oct 29, 2013 9:53 am

Sarah

Great job for the dosconnection and flushing procedure! As a patient I know how sensitive the central line area is ! My other half Sam loves to play nurse (actually vet, she is constantly administerng vacinations to our 3 horses and loves playing with vet wrap and iodine !)

I know how bervous I was as I watched her scrub up and arrange her operating table in front of our 4 year old who thought the whole process was amazing !

She has repeated this process several times and is now a dab hand at it ! it makes such a difference being able to manage the basic things at home and I am sure your Mum will give you ten our of ten next time!

Goodluck for your mid term scan

David

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

Re: Cycle 3 Folfirinox - Half Way There!

Postby Cathy » Tue Oct 29, 2013 3:37 pm

Hi Sarah

Well done on learning that. As you probalby remember, we were lucky enough to be offered this service via our District nurses but they were equally happy to teach me (in fact, positively enthusiastic).

We took many a trip (including to Greece earlier this year) armed with saline, syringes and a syringe bin. What option is there otherwsie? I wasn't going to take a nurse with us?

I don't think I was ever a 10 though. The tagaderms stuck to everything. :)

Best of luck with the scan Sarah!

Cathy xx

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

Postcode lottery for rural patients

Postby InfoForMum » Tue Oct 29, 2013 8:44 pm

Mike, David, Cathy,

Thanks for the lovely replies :-). Have to admit Mike, yours did make me slightly tearful, in a good way. When you said 'well done my lovely' it brought memories of my Dad flooding back as it's something he would call me. I'm as sure as I can be that he would be proud of both Mum and I, but it doesn't stop me missing my Dad hugs and the benefit of our after dinner chats where he passed on his hard won experience. It was nice to feel cared for that way.

As for the postcode lottery, I have been barraging our MPs with messages trying to provoke interest in the all party working group and specifically highlighting the challenges of having specialist centres in largely rural regions. Not hard to gather the necessary patient numbers to qualify for having 1 or more specialist centres in large cities (government dictates at least 2 million patients have to be served by a hospital applying for that status), but for us in East Anglia and in many other regions the catchment area to get that patient count is huge. Many, many patients are travelling hours for that specialist care, when expertise in chemo, line care and other repetitive treatment should be made available in all larger local hospitals and consistently from district nurses and GPs driven by and supported by specialist centres. Not only that, patients in urban areas often have a short trip, with good transport links, to another specialist centre for a second opinion/alternative treatment. Not so here. Travel actually becomes a quality of life factor in decisions about treatment, impacting prognosis more or less depending on how well/well funded/well informed/motivated a patient is. And I'll now delicately descend from my well used soap box!

David - glad to hear I don't have the only 4 year old fascinated by body parts and gore. Caught her watching "The real A&E" having left her with cbeebies while I washed up. A) didn't know she could manage the sky remote that well and B) after careful enquiries as to whether she was scared/confused by what she was watching she floored me by explaining the biker had a fractured femur and that was dangerous as he could lose a lot of blood. We watched together before going back to Ben and Holly's. A future surgeon or trauma specialist perhaps?!

In terms of your Mrs playing vet I'm just hoping she doesn't go for a one size fits all aproach to taking temperatures!

Cathy - hoping against hope to get mum away for a week between chemo and radiotherapy, but complicated slightly by time of year, potential weather issues and having the whole clan down for chrimbo. Watch this space. Wonder if they would count my big yellow bucket in the carry on baggage allowance?

Mum's had a good day today despite tiredness, a bit of a sore throat and better, but still iffyish appetite. On the whole good and building back up to the 4th chance to grab our personal monster by his short and curlies to bring him to his knees :-)

Sarah
XXX

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

IV Home Care Trial to Start in Norfolk

Postby InfoForMum » Wed Oct 30, 2013 4:32 pm

Hi all,

Thought you would like to know that I've had a response from my Mum's MP. He's been in contact with the local district nursing commissioners and has confirmed that a trial will start soon to have specially trained nurses provide IV line insertion and IV line care at home in areas where that's not currently done.

It may not be soon enough to help my mum, but will help other local PC sufferers and any other patients with a central or other IV line. The upshot should be shortenend hospital stays, less travel, lower infection risk and overall better quality care.

PLEASE PLEASE ADD YOUR VOICE TO THIS IF YOU LIVE NEARBY AND WANT TO MAKE SURE THIS BECOMES STANDARD COMMUNITY NURSING CARE RATHER THAN A TRIAL THAT GOES NOWHERE.

I've put together more details (including where you can find MP contact details and a copy of the letter I first sent to ours) on the below new thread. I'm also going to scan and forward copies of letters received from our MP and the local PCT commissioner to the support line that you can ask to see.

It shows we can make a difference. I was doubtful and cynical, but have been proved wrong.

Not all of us have the time, energy or motivation to fight these things when we're already fighting this demon disease or supporting others to fight and I fully understand that, but if you do want to share your views and potentially make a difference GO FOR IT!

http://forum.pancreaticcancer.org.uk/vi ... =23&t=1212

Sarah
XXX

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

Re: 4 Folfirinox Down, 2 to Go.

Postby InfoForMum » Wed Nov 06, 2013 11:00 pm

So, back from hospital after cycle 4 (well apart from next 40 odd hours on the 5fu pump). I helped Mum pass the time by sharing my Dexter box set. Wasn't sure a series about a serial killer was quite the right vibe, but she thoroughly enjoyed and passed a decent chunk of the time.

I'm now a line flushing demon. The kids gathered to watch again but wimped out when I drew the blood, even though they'd kept asking "where's the blood".

Very few cycle 3 symptoms, probably due to the reduced dose, but as requested her dose has gone back up to the original modified dose for this one and her onc is considering going up to a standard starting dose + bolus for the last 2.

Sensitivity to cold has been cumulative - started almost immediately post treatment this time. Fatigue is expected to be worse and she's bracing for diarrhoea days 7/8/9, but all told still trucking on. She cooked us all a roast on Sunday then on Tuesday she hosted a fireworks party for the kids and I (I bought £120 worth of discounted fireworks and they just about blew the windows out, but were fantastic). Kids bestowed the ultimate accolade after hot dogs, hamburgers, tatties and choc brownies were served up...."Grandma, it's better than MacDonalds". Praise indeed!

The only cloud on the horizon is her BP, which, with no history of hypertension, remains consistently high. I've encouraged her to take it up again with her GP as the chemo ward keep writing it off to worry about chemo, even though I can hand on heart say she was really calm. 179 over 97 today. Not going to have her keel over with a stroke or heart attack - that would be too damn ironic (her words).

All things considered small prices to pay.

6 days until the scan. 8 days until results are in.

Love to all

Sarah
XXX

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: 4 Folfirinox Down, 2 to Go.

Postby davidandsam » Thu Nov 07, 2013 5:42 pm

Hi Sarah

Great news that your Mum is progressing through cycle four and so far with flying colours, tell her not to fret about days 7/8/9 speaking from experience "it might not happen this time" and if it does it maybe a lot easier to manage than cycle three. I can not pigeon hole the side effects, for me sometimes I have tingly digits and feel tired and sometimes I could stick my head in a freezer and run about like an "eejit" I am experiencing no set pattern which if I remember happened from about cycle 3/4.
So with a bit of luck your Mum might get the same random selection of minimal side effects, I truly hope so.

I can imagine your thoughts and anxieties surrounding the CT scan, I had my "mid term" CT about three weeks ago with reasonable results (stable Primary tunour with some scar tissue perhaps, and liver mets reduced on average by 10~15%)but the anxiety between scan and discussion was a tough one. I am never negative especially when fighting my demon but it really tested my grit and positivity, get ready for the super support role and stay positive ! My support network went into overdrive with distraction tactics and positivity and it helped massively! To the point that I promised myself a glass of bubbly if the results showed we were moving forward, again Sarah that helped a lot ! (especially after the bottle was consumed !!)

The BP maybe the white coat syndrome, I have an issue where my resting heart beat at home is ridiculously low at about 45~50 BPM (triathlon training Pre-PC) and as soon as I see a white or blue coat "wallop 75 plus" could be the same for your Mum

So with 8 days to go to the results I wish you and your Mum all the best and hope some of my positive vibes rub off on her !

Fingers crossed you might even get more roast dinners !

All the best to you all

David

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: 4 Folfirinox Down, 2 to Go.

Postby KATB » Thu Nov 07, 2013 6:34 pm

All sounding good Sarah - you're doing a brilliant job!

xxx

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

Re: 4 Folfirinox Down, 2 to Go.

Postby J_T » Thu Nov 07, 2013 8:50 pm

certinly agree with david and Kate. Your tenacity is amazing. What a brilliant job you are doing for you mum! Go girl!

x

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

Re: 4 Folfirinox Down, 2 to Go.

Postby Bee » Thu Nov 07, 2013 10:27 pm

Ditto Sarah,
Well done you, keep going.
Bee xx