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

Central Line Insertion

Postby InfoForMum » Fri Sep 20, 2013 11:59 pm

So on to the next thing. Mum's line on Monday (doing separate subjects cos I think it might help folk find relevant stuff easier - not sure). This is going to be the first visible change to her body, with the exception of moderate weight loss, since this started. I've shown her, at her request, a YouTube vid of someone flushing their own Hickman line so she gets a feel for how this is going to be/look/feel. I'm not sure, and hope I'm wrong, but think this bit might upset her. She commented today that this feels like the start of her body not quite being her own for a good long while.

This may sound trivial to some, but I suspect others will get it. She's got her usual game face on, even talking to contacts we have who can help with tattoo eyebrows, semi-permanent eyelashes and good wigs in case of need, but it's not real til it's really real is it. We know that's a small corner of the bigger challenge, so please don't think we're ignoring the bigger fights going on for others.

The rebooked MRI is the Wednesday locally, then on to the main event next week. First FOLFIRINOX. That's the biggie in a week of biggies. Week after next will be the biggest biggie so far, the MRI result to find out what those 2 teeny liver lesions most likely are.

Sarah
X

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

Re: 1st chemo hopefully with surgery at the end

Postby nikkis » Sat Sep 21, 2013 9:02 pm

Sorry Sarah but I have only just seen your post about contacting the MP - well done girl! Paul has had 3 lots of Folfirinox now, we was told that his hair may thin but not fall out and that has been the case. He hasn't been to the barbers, just a quick trim at home so as a result he has very bushy eyebrows! Hope its the same for your Mum (though obviously not the bushy bit!),

Nikki

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

Re: 1st chemo hopefully with surgery at the end

Postby InfoForMum » Sun Sep 22, 2013 12:02 am

Lol Nikki, thoughtful post, thanks! Mum and I only recently commented that one sign of getting older was having to attack your eyebrows with hairdressing scissors as well as the tweezers. May just be us...who knows! Her consultant said she was pretty much guaranteed to lose her hair or at least get dramatic thinning. Not quite what my research had said, but seems she's prepared.

Did have a wobble today. She had some persistent lower abdominal pain overnight. Enough to periodically wake her and continuing through today. No temp (I suggested she do temp every day in run up to chemo to establish a baseline morn and eve). Not, as far as I know, a symptom of pancreatitis (would be higher pain like last time), but as usual every twinge is scaring her. Think she may have overdone the rich food while my sis was here and upset her system along with a couple of glasses of red wine, so will wait and see.

Sarah
XX

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

Re: 1st chemo hopefully with surgery at the end

Postby nikkis » Sun Sep 22, 2013 8:45 pm

This blinking (for want of a stronger word) disease never lets us relax does it Sarah?
Nikki

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

Re: 1st chemo hopefully with surgery at the end

Postby InfoForMum » Tue Sep 24, 2013 11:01 pm

Line placement went well. It is much more discrete than Mum thought it would be. Sore still, but she's already forgetting it's there some of the time. We've also got some more recent bloods. 29 for the bilirubin - yey. Not bad considering it was over 300 on the day of the stent op 4 and a half weeks ago. Also paid attention to the CA19-9 for the first time. 90 a week ago. Haven't got past levels to compare, but think that's not too bad.

Have clarified the regime. They're starting slower - usual dosage Oxaliplatin, 75% of usual Irinotecan, no 5fu bolus, but normal dose for slow infusion by portable pump. As most would, Mum's worried they're starting too slow and she may not be fit to have that ramped up later (the plan if she tolerates well). That's swings and roundabouts. We'll see.

One good bit of news to share (well encouraging bit of news). The radiologist had another look at her 2 CT scans to check out the liver lesions in more detail. His summary said the enlarged lymph node is almost certainly due to the pancreatitis/biopsy and the two quote "tiny" liver lessions were in fact there on the first 9th Sept CT, but weren't spotted and when comparing he could see no size/shape change so suspects they will be cysts. Still not in the clear on that til MRI results back next week, but has freed up a bit of both our heads to focus on the chemo.

As a little light relief I took her out for lunch and a movie today. Went to see Rush (about formula 1 rivalry between Niki Lauda and James Hunt) and twas very good. Also, the barmaid in the pub made me laugh (much needed). She wasn't enjoying her shift, but said Monday had been worse. On Monday she'd said to her boss "if you want bright eyed and bushy tailed find a [very rude word] squirrel!". Thought someone here might want to reuse if expectations of putting on a brave face get too high sometimes.

Take care all,

Sarah
XX

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

1st Chemo Session Yesterday

Postby InfoForMum » Fri Sep 27, 2013 9:38 pm

A very emotional day yesterday. The nurse thought Mum would be relieved to have something finally happening, but she had a hard to fight gut reaction that it was wrong to voluntarily put poison in her body. She cried with me for the first time, but thankfully had no symptoms during the infusion or overnight, but today her fingers have been tingling in the cold as an expected symptom of the Oxaliplatin and this afternoon she was sick for the first time.

That concerned her as she was told she should not be sick taking the antiemetics (she has 2 to take 4 times a day as a precaution). We think it was because she woke up at 4.30am and took first dose then, then second with breakfast at 9ish, then delayed the next dose until about 3pm. Probably a bit too long. She's talked to the ward at the hospital and they've said to keep an eye on things and contact them if it happens again after the next dose, then they'll consider changing to different ones. Think it's Ondansetron she's currently on plus a steroid twice a day for 2 days (Dexamethazone - doubtful spelling there). The other thing that's really worrying her is that her appetite took a dive the day BEFORE chemo and is gone now. She's going to try meal replacements once a day to get some balanced nutrition down, but will have to see how she goes.

She's scared. Don't like that she's scared, but it's 1 down and hopefully only 5 to go, depending on the outcome of the last MRI to look at those liver lesions. Monday PM for that appointment.

Hope you are all keeping on keeping on.

Sarah

InfoForMum
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Re: 1st Chemo Session Yesterday

Postby InfoForMum » Fri Sep 27, 2013 10:23 pm

Damn me for being so bloody introspective. Spouting trivial non-problems, then spotting Karen's post. Can't believe Bob's gone. So, so pissed off for him, furious at this bloody disease and so sad for Karen and her kids.

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

Re: 1st Chemo Session Yesterday

Postby Cathy » Sat Sep 28, 2013 10:23 am

Hi Sarah

I know. Still shocked and upset. :(

Has your Mum been given steroids? They are given for anti sickness with chemo but also have the added benefit of boosting appetite. Jonathan always had a huge appetite the weekend after each infusion. I also remember that Ray (Julia's hubby) was very sick after his first infusion but was much better after that.

The tingling is a classic side effect of the oxalyplatin. Keep an eye on it over the next few sessions and make sure you let the onc know as they can adjust the dosage. The tingling can be cumulative and a bit unpleasant. I know I'm probably telling you nothing you aren't already doing as you seem fantastically clued up on everything. :)

Hope your Mum feels ok over the next few days. The first session is very scary as you don't know how you will react. But it will help inform future cycles.

Cathy xx

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

Little or no appetite, nausea and sick again

Postby InfoForMum » Sat Sep 28, 2013 10:04 pm

Thanks for the post Cathy, as you illustrated everyone is different.

Mum was sick again today after a day of fairly constant nausea. She actually threw up in Sainsbury's car park and was mortified. I tried to deal with that. She also has the extreme sensitivity to some smells that others have reported - I have to clean out her fridge for her tomorrow so she can open it without having to hold he breath!

For effects of Oxaliplatin on fingers and toes and Hickman line comfort just found some good stuff on-line (spending money is another of my fortes and feels like the only thing I can really do now). Silk/elastane bra tops (reportedly didn't feel like she was wearing anything and kept tube under control). Riding gloves -cheaper than arthritis or other specialist gloves, thin but warm and have grips. Also ordered some silk socks which can go under another pair in real cold let feet keep warm and not get sweaty in bed. All not too pricey and from Amazon and can share specifics if needed.

Did call oncology again as with lack of appetite (even while taking dexamethasone steroids) and throwing up is a concern. Turns out she's not on Onadestron (if that's right) it's domperidone. Made a poor assumption based on not having the info an looking at most common anti-emetics. Think an ask for a change might be in order. I'm sure it's not helping that she's making a normal days dose stretch over 20 hours (waking up at 4am, not getting to sleep til midnight ish).

She's also stressing about keeping fluids up as water, coke and oj are starting to make her feel sick. From what I understand nausea should be tailing off on day 4 or 5 so hopefully this will resolve. She doesn't want a dose modification if this is just a med issue so we'll see next time around.

Take care all

Sarah
XX

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

Re: 1st Chemo Session Yesterday

Postby nikkis » Sun Sep 29, 2013 3:35 pm

I'm with you on the spending money being something you can do Sarah, even brought an exercise bike as Paul thought it would help build his stamina up, of course it just sits in our lounge unused, but at the time we were convinced it would make all the difference!
Have also spent a small fortune on different drinks. The best one for Paul, especially when he is feeling sick, is Bottle Green, Lemongrass and Ginger. Probably not for everyone, but it works for him. Just worth trying different things and hopefully there is something that will suit your Mum.
Your Mum must be so glad she has got you Sarah,
Best wishes,
Nikki

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

Re: MRI Clear - Onwards to cycle 2 FOLFIRINOX

Postby InfoForMum » Mon Sep 30, 2013 4:27 pm

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
XXX

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: MRI Clear - Onwards to cycle 2 FOLFIRINOX

Postby Slewis7313 » Mon Sep 30, 2013 6:03 pm

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

Re: MRI Clear - Onwards to cycle 2 FOLFIRINOX

Postby nikkis » Mon Sep 30, 2013 9:11 pm

Great new Sarah, everything just makes you cry doesn't it, good or bad? That's another thing I spend a lot of money on - tissues, all different sorts!
Nikki

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

Re: MRI Clear - Onwards to cycle 2 FOLFIRINOX

Postby Bee » Mon Sep 30, 2013 10:23 pm

Fantastic news, let battle commence !!
Bee x

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: MRI Clear - Onwards to cycle 2 FOLFIRINOX

Postby belgrade » Tue Oct 01, 2013 12:05 am

So pleased to hear the good news about your Mum Sarah.
Take care.
Hilary