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Nikkis, thanks so much for the gen on Meal replacements. Will no doubt come in handy! As for the spending - you n me sound like kindered spirits.


All,


GOOD NEWS!! The two spots on liver were diagnosed as cysts and rest of the MRI came up clear for secondaries and original situation from CTs (Borderline rescectable diagnosis) confirmed. Best nausea medicine EVER!


Mum's now ready again for the fight. Needless to say I cried (always do when things go well!). Sharing some good vibes with all others who need some.


Sarah

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Sarah, that really is good news which is most welcome after the difficult situation some of our friends here find themselves having to deal with lately. Also great that it is inspiring your Mum to recommence battle!



Best of luck to you


Steve

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Thank you so much everyone. Will pass on your best wishes to Mum. She hears about you all second hand and is so greatful for the support you offer me and the experience I can pass on to her.


As you say Bee - bring it on!


Sarah

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Thank you so much Hilary, I hope you are doing OK. It's very kind of you to take the time to wish us well.


Our main battle at the moment is food. Trying to find something she can eat and occasionaly something she enjoys. She's slowly coming to terms with the fact that sitting down to large meals isn't ideal, so now she's sitting down to eat at brekky when things are best then spreading snacks through the day. Unfortunately she's also now got lots of indigestion kicked in. She's suffered from that for years even when well and it's triggered by stress + a small hiatus hernia. From what I've read indigestion is also an expected symptom of chemo so sadly for her, given ranatidine is only working a bit, she's just going to have to cope.


She was better later today. Bought some mini pork pies and good traditional piccallili and some mini soul food puds (rice pudding, steamed jam pudding, trifles) and actually saw her enthusiastic about eating. The puds, pies, crisps and dips etc get laid out while watching re-runs of West Wing, so sometimes she's distracted enought to forget the nausea (big psycological element of that too - feeling slightly ill makes her think about being ill/recoil at he smell thought or sight of food or makes her ill) and just munch on stuff. Very rewarding, but am not taking any offence when she screws her face up at what I buy or offer. Baby steps.


One thing it would be good to hear from others on is whether they had any side effects, except sore injection site, from white cell boosting injections. She has a 7 day course of Filigrastim she was told to start on day 5.


Anyway, hope all are well. Saw Steve's news about new options for him and that cheered me up a bunch and jealous of Cathy and family getting away, but concerned about Julia and others as I think things are less rosy.


Take care


Sarah

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PCUK Nurse Jeni

Hi Sarah,


Is your mum on a proton pump inhibitor for the indigestion? Something like OMEPRAZOLE or LANSOPRAZOLE? If not, then she should be, as these are far more effective than drugs like ranitidine (seldom used these days). They are also good for taking alongside creon, so apart from them having a benefit for the indigestion, they will benefit the creon action.


Jeni.

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Good news Sarah re mums scan :-). I think little and often is the way to go with food and like Jeni says omeprazole often does a good job. Your mum must be so proud of you Sarah - you're doing a fantastic job. Look after yourself too mind

Karen xx

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Thank for your thoughts Karen. Generous as always. I hope you and the kids are coping with this busy time and friends and family are doing their bit. Thinking of you all and sending hugs.


We're now day 9 and nausea and indigestion both better. Still some stomach cramps after night time diarrhoea days 7 and 8. Also had a little bounce in temp yesterday - up to 37.8 at one point but variable down to normal in between. Back to normal today but keeping an eye.


Good meet with consultant today. PPI prescribed, slow release version of filgrastim prescribed (Mum had only mentionned she was running out of stomach to inject in and doc volunteered this - din't know there was such a thing so yey for doc) and alternative anti-emetic for next cycle.


One fab, fab thing today. Eating is much improved. She's been avoiding plates of anything that look like whole meals from day 2, but today blagged Sainsbury's into giving me a kids portion of sausage and mash with peas and she scoffed pretty much the lot. We were both delighted, but it did lead to me embarrasing myself in public.


She's been eating little or no veg since this started so when she was done she turned to me with a grin on her face and said - "Well that's the first green thing I've had inside me for a while and it was quite nice!" unfortunately I couldn't resist replying "the jolly green giant thanks you too". Wasn't so much what I said as that I found it hilariously funny, so laughed til I cried with various snorts and gasps with Mum and other Saindsbury's cafe patrons looking disapprovingly at me.


Never mind hey!


Sarah

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Morning all,


All good today except car overheating on the way here and a blip with BP. 158 over 102! Yet to see what happens when taken later, but a worry as Mum is pretty chilled despite car adventure. Given it's day 14 pre-chemo any advice on that BP would be fab, but will come back with what the next BP is.


I've been off the forum for a wee while so apart from knowing Cathy is in hols and Julia and Kat are having a tough time I haven't caught up with you all, but hope all is ok (under our difficult circumstances.


More later.


Sarah

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Dear Sarah


I have just caught up with your story about your Mum so...


Just a quick word to wish your Mum good luck for cycle 2 today ! (I guess by now she is well on her way to completion) I have my 4th cycle of folfirinox (Furry fox in our house) tomorrow and can actually say I am looking forward to it ! I know it's a bit of a weird thing to say but maybe your Mum feels the same as me. I feel it is my way of absolutely doing something about this bloody thing,every 14 days I feel I am doing my bit ! and 13 days following that I am using determinatin and will power (and family and friends) to fight it !


I think the second cycle for me was much easier as the anxiety from the first cycle was out of the window by then and it's a bit shorter !!


Sorry I can't help on the BP question, please give her my best and I would snap up pork pie and pickle any time !


All the best


David

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Hi,


Thanks for that David, Mum likes the Furry Fox nickname. Nickname isn't so family friendly in our house. To avoid offense let's call it "procreator (swap that for appropriate expletive) fumigation". Mum was also pretty positive about going for 2nd treatment. The 4 or 5 days feeling herself restored the fight. She tends to go through phases - down and poorly, hacked off at being poorly, not so poorly, but tired and beligerent, then pretty well and issuing orders. Good luck for your cycle 4 and the rest - 75% done!!!!


As for how it's gone this time. Meds for cycle 2 changed to Emend as anti-emetic (1 tab for 3 days starting day 1)and lo and behold, no nausea so far (now day 3, by which time she'd had 36 hours of constant severe nausea and 1 episode of vomiting with the Domperidom). Also no ill effects from the single dose Filgrastim (bone marrow stimulator to keep white cell count up). Appetite is a bit subdued, but far better than this time last cycle. Tingling fingers and throat spasms with cold came on quicker and worse, but still bearable. Fatigue also hit earlier, but not yet severe, but last steroid taken tonight so we'll see.


All in all REALLY good news.


2 down, 4 to go.


My thoughts are with Julia, Kat and Karen at the moment as I know things are really hard for you all. Much love and hugs.


Sarah

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So, in the interests of sharing for others starting their folfirinox, more about cycle 2 symptoms:


Days 1 to 3 were great in terms of little or no nausea and only slightly lowered appetite since anti emetics swapped from domperidone to Emend. The only hard one was the cold sensitivity in mouth hands and feet. Silk ski-glove liners helped as did silk socks, both of which can be worn with other layers with no discomfort. Also she was enjoying raspberry, orange and other juices with water, didn't want to let them go off leaving out of the fridge, but couldn't take them cold. The answer was water in a glass in microwave for 45sec to 1min, then topped up with cold juice. Resulted in warm glass and room temp juice - bingo!


Day 4 her throat and mouth got sore with cracking in corners. Blisteze helped on corners, but trip to docs day 6 and they diagnosed oral thrush. Now has nystin anti-fungal to use 3 times a day after food - have to swish round mouth for as long as bearable as it has no effect once swallowed.


Day 8 - today - repeated urgent trips to the loo starting 6am with normalish result, but by 5th trip she had developped severe diarrhoea. She took 2 lopermide straight away then one every time things happened again, but by 10am called me saying she couldn't eat or drink without it going straight thru. Talked to acute onc team and they said to go in for assessment if not resolved in 6 hours from onset, but luckily tablets seemed to have worked by 11am and she braved the shower by 12 and something to eat. Ok by 3pm - no temp at any point or we would have gone in.


More generally she's Ok. Each new symptom gets her down, but she feels guilty for being "thetic" in her words as she knows many have it much worse. I've told her to feel free to complain. A stiff upper lip isn't going to benefit anyone and having a 4 & 7 year old I'm bombproof when it comes to a good whinge!


Love to all


Sarah

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Hi Sarah


All sounds very familiar. Jonathan suffered with mouth ulcers and cracking in the corner of his lips and so used my lip salve at first til I bought him something a bit more butch (:))


Sounds like she is coping well though which is great.


Cathy xx

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Dear Sarah


I am pleased to hear that your Mum is cracking on and that the meds so far seem to be doing the trick! As Cathy said it all sounds familiar ! I guess if we add up all the "little" symptoms it is enough to get us down, but in isolation it seems weirdly manageable, even if it is enough to make you scream sometimes. Life is a touch more complicated than before with the inclusion of things like microwaved orange juice and silk undergloves,I find your creativity a real inspiration!


For me now in week two of cycle four and so far so good with the usual annoying side effects. (insert any topics in your mail here!)the biggest issue for me has been the side effects of the "Neulasta" injection which leaves me feeling pretty crappy for almost a week after. It's a small price to pay for a boosted immune system and I am finding simple meds such as paracetomol to be of some comfort.


so, Cycle 3 for your Mum and 5 for me looms, good luck to all!!


David

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Thanks Cathy, Thanks David!


It's great reassurance to hear how familiar it sounds. She is often asking me if this is "normal" and posts here help me reassure her. Better overall today. A few threatening grumbles, but better stomach-wise and oral thrush is clearing up. Dry mouth is also a bother, so we raided the vintage sweets in the shop down the road (pear drops, sherbert lemons, cola cubes...yummm...). Working well and nicest symptom control prescription by far!


Had a few good laughs as well. One where we both tackled her german shepherd to give him a good brush. When she brushed his fluffy bits at the back he dived through my legs sending me flying. The other one while watching Weakest Link. I walked back in the room to hear Anne Robinson saying to an Asian contestant "Did you come on your rickshaw then". My jaw dropped and I said "that's her career at the beeb over!". Only worked out what was going on when mum regained the power of speech after spitting her coffee over the table. Turns out the fella anounced at the start that he's a professional rickshaw driver.


All the best for the next one David. Cathy, I know before holidays, before Bob and before Ray (talk about the world shifting under peoples feet!) you had mentionned a scan result pending. I hope that brings positive news.


Sarah

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Hi All,


Having a major wobble as is Mum. She had diarrhoea starting day 8:


Day 8 – On waking at 6am abdominal cramps and urgent visits to the loo to empty bowels. 4 consecutive normalish bowel movements succeded by a bout of diarrhoea. 2 loperamide taken 7.30am. Attempted breakfast, further cramps and diarrhoea. Additional 1 Loperamide taken 9.30am. On-going cramps, but no further bowel movements. Symptoms settled by 11.30am.

Day 9 – Cramps and urgency to go to the loo and loosish 6.30am. 2 Loperamide taken, no diarrhoea. Cramps gone by 10am.

Day 10 – Lesser urgency. 2 Loperamide taken prophylactically. No diarrhoea in morning or throughout day.

Day 11 – Some abdominal grumbles. Again 2 Loperamide taken prophylactially and no issues.


Since then nothing. Eating and drinking well (apart from breakfast) and bloods described by chemo nurse as excellent (LFTs better than pre cycle 2 and U&Es all well within normal plus Bilirubin down to 8!!!


Why then has her consultant reduced her Oxaliplatin and 5fu dose to 80% on top of an original modification to regime for whole course omitting bolus and reducing Irinetocan to 75%?!


She was told this would not be increased again for remainder of course and she was floored. She's still generally well and wants to blast this thing in the short term for the chance of whipple, but her consultant is giving her generalist statements about her decisions and not talking things through. It appears she doesn't feel it's appropriate? necessary? useful? to talk her reasoning through with her patients and absolutely WILL NOT speak to me on Mum's behalf. In addition our local ONC will not comment due to fact they don't do folfirinox there (understandable) and onc working with the surgeon just says "she's very experienced so I wouldn't question".


Feel utterly helpless because this will be the first soul crushing "what if" question if her scan to check effect of chemo on the 12th has bad news. We can't have this fight later so what the hell do we do?


Any advice appreciated.


Sarah

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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

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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

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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

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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

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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

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