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

A bit of a worry....

Postby Cathy » Thu May 09, 2013 6:33 pm

Hi

For those that haven't read any of my other posts, Jonathan, my lovely partner was diagnosed just before Christmas 2012 with advanced pancreatic cancer. This was a devastating blow and a dreadful shock as he was so fit and healthy otherwise with no other symptoms other than some fairly low level nagging pain. I thought he had IBS!

Anyhow, he has been on Folfironox since the beginning of Febuary and has been doing fantastically well. His pain went almost immediately and his weight has increased and he is managing the side effects of the treatment really well.

His recent CT scan didn't seem to show much change but his blood tumour markers had halved (I think) and overall he feels (and looks) very well.

So, I was a bit worried when 2 nights ago he complained, in bed, of a bad back and neck. Immediately alarm bells started ringing. The next morning he complained of the same, and some stomach pain when he had been standing and then lay down (more alarms bells) but said it doesn't last long.

This morning when I asked (again) he said it was getting better and only lasted for only 10 seconds when he got into bed. He now says he is fine and feels better (although this might be that he is now completely fed up of me asking him how he feels - I am officially more irritating apparently!)

I had a long chat with his key worker this afternoon who has put my mind at rest a little saying it could just be a one off thing - particularly as he has no other symptoms of feeling unwell and is still eating well and going to the loo "normally". We're due to see his oncologist again on Monday and will discuss with him although I was told that it would be unlikely he'd be referred for another scan so soon unless he had had more severe prolonged pain and other sympoms.

I wondered if anyone else had experienced anything similar?

Jonathan isn't concerned about any of this of course. Just me.

Cathy xx
Last edited by Cathy on Thu Nov 07, 2013 5:39 pm, edited 2 times in total.

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: A bit of a worry

Postby Sueba » Thu May 09, 2013 10:52 pm

Hi Cathy
Sorry I can't offer a proper reply but just wanted to say I have had the same kind of worries with my hubby before.He is on Fofirinox too and had a twitching/throbbing shoulder last weekend which he says he's had once before but goes off,after watching him for 4 hours I rang our hospital hotline who told me prob ok if no temp etc but hubby was cross with me and said not to worry!!!its been fine ever since so prob just a side effect of chemo.
I think I worry for both of us!!he seemed more interested in the football!
Good luck with next cycle
Sue
X

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

Re: A bit of a worry

Postby Cathy » Fri May 10, 2013 2:02 pm

Hi Sue

Thank you very much for your reply.

Yes, "throb" was the word Jonathan used and as he mentioned his back I reacted as you did. I think he wishes he'd kept his mouth shut now as he, like your hubby, would rather concentrate his attentions on the football than have me fussing over him like an annoying bee.

I've checked with him twice today and both times been told, very firmly, it's fine now. So fingers crossed it really was nothing. We'll see his oncologist again on Monday so see what he thinks as well.

Good luck to you for the next cycle as well. Ours is Weds. When is yours?

Cathy xx

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

Re: A bit of a worry

Postby J_T » Fri May 10, 2013 5:15 pm

hi Cathy, I think its hard for us carers sometimes! I would have reacted the same as you, of course you were concerned!

Hopefully your onc will be able to put your mind at rest and I hope Jonathan has had no recurrence of these 'niggles'.

Julia

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: A bit of a worry

Postby PCUK Nurse Jeni » Fri May 10, 2013 5:30 pm

Ladies,

If they are getting shoulder pain and the 5FU is running, then do get in touch with the chemo unit, as it can cause this, and sometimes, angina type pains.

If the 5FU is not running, then as Jonathan's key worker said, it's probably a one off.

I do think you are right to be concerned though. Always better to be safe.

Jeni.

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

Re: A bit of a worry

Postby Cathy » Fri May 10, 2013 5:48 pm

Hi Julia and Jeni

Thanks for your replies. I'll be keeping an eye on him this weekend but he does seem fine at the moment. It would have been about 4 days after the 5FU so hopefully just some random thing.

Julia - hope Ray keeps well over the weekend and into next week this time. Both Jonathan and I think of you all.

Cathy xx

LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

Re: A bit of a worry

Postby LindaH » Fri May 10, 2013 6:42 pm

Hi Cathy,

I too was diagnosed at Christmas 2012 inoperable 6cm tumour.

Back pain (right between my shoulder blades) was my major complaint. The Gastro doctor told me it was the tumour pressing on the nerves in my pancreas. I was given low dose Morphine 10mg which over the first few months before Chemo I needed to crease the dosage. Having said that I am now cutting the dose which is good for me.

I often get back pain. Sometimes it's maybe just because the duvet is up against my back, that is how sensitive it can be for me. Plus when I'm sat in my chair I have two cusions against my back, to enable me to sit more upright, but it does give me pain after awhile. I don't worry about it too much because it does get better and if as you say there are no other symptoms it probably is a one off thing.

I completely understand it being a worry for you...

I hope Jonathan continues to go from strength to strength.

Linda x

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

Re: A bit of a worry

Postby Cathy » Fri May 10, 2013 7:53 pm

Thank you Linda and thank you for your reply.

It's good that you are able to decrease the amount of pain killers you are on. That's a good sign and must feel a huge relief.

Jonathan was quite "lucky" I suppose in that his pain was never that bad and went almost immediately after the 2nd session of chemo. I guess my first thought, when he developed new pain was that it meant the chemo had stopped working. His pain seems to have gone now again so fingers crossed it was nothing. It never seemed to worry him at all!

I saw your thread about your chemo being put off a week so I'll add a reply to that.

Kind regards

Cathy xx

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

Re: A bit of a worry

Postby J_T » Sun May 12, 2013 1:37 pm

Glad to hear Jonathan's pain has gone now - phew!

I know what you mean, every thing out of the norm alarm bells start ringing! Its normal I suppose :)

Julia x

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: A bit of a worry

Postby Sueba » Sun May 12, 2013 2:25 pm

Hi Cathy
Yes micks settled too,it was a week post chemo but he tends to think its a side effect of the chemo .
He had his 2nd cycle of Folfirinox on Friday so next week I shall be looking for the same thing!!think he will be hiding in the other room if he starts again!!he thinks it was more muscle twitching then anything else and there was no pain ot high temperature with it!
If its not football it's formula 1 now!!and if micks not watching it my 3 sons are,so I've come in a different room to watch "come dine with me"
Sue
X

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

Re: A bit of a worry

Postby Cathy » Sun May 12, 2013 4:29 pm

Hiya Sue

I think Jonathan's was just under a week after chemo. He had it on Weds and complained of the pain the following Monday night/Tues morning - nothing since really. It's not happened before but it's something we can look out for now and very helpful to know what Nick has experienced. This was his 6th FOLFIRONOX.

Like Nick I think Jonathan found me far more annoying than the pain. I guess it's a good sign if they feel like that as it obviously isn't anything that they felt was a concern.

Oh I'm with you about Come Dine! Im a bit of an addict. A family friend is on it in a couple of weeks (filmed in January) .. I can't wait!!

Hope all goes well this cycle for you both.

Cathy xx

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: A bit of a worry

Postby Sueba » Sun May 12, 2013 10:25 pm

Hi Cathy
Oo let us know when your friends on!shes very brave!!i love it though its very addictive!
Mick still sickly,this is his 2 nd cycle post whipple,he had 6 cycles preop and apart from the first cycle once they tweaked his meds he was great really.
Oncologist said this will be a different kettle of fish as he's now got different anatomy(!!!) and is only about 11 weeks post op after major surgery.His scan was clear post op so this may be has last chemo,belt and braces and all that!!then not quite sure.....I think a scan in 3 months.
Bye for now
Sue
X

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

Re: A bit of a worry

Postby Cathy » Mon May 13, 2013 11:06 am

Hiya Sue

I will indeed. I'll post on this thread when I know.

I'm clearly going to have to start wearing my glasses when I use my laptop - I'd read Mick's name as Nick!! I do apologise. :oops:

How womderful it's his last chemo. I hope you have something super lined up to celebrate (not football or F1 related)

Cathy xx

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

Re: A bit of a worry

Postby Cathy » Tue May 28, 2013 5:28 pm

Poor old Jonathan has had a bit of a struggle since his last chemo. Unusually he was offered a drug to counteract tingling (which he actually hadn't asked for or wanted) and coincidentally (or not) his tingling is far worse this time. He also, 2-3 days after, developed a huge thirst (wore off after another 2 days - both his thirst and my panicking because of it) and has also developed (now also worn off) a very painful mouth and throat which Jeni has suggested could be thrush and could be related to the steroids, as could his feeling thirsty. He's also struggled with fatigue a lot more. We've an appointment with the oncologist tomorrow lunchtime now much to my relief and after Jonathan kicked up a fuss today (initally he was due to have his next chemo session without being seen by anyone). His 8th folfironox is due on Thursday (if his blood tests are ok), then a scan and a discussion about what next.

Because of all of this his bitter melon remains undrunk in the fridge - I will broach this again tomorrow...

Hope you are all doing ok.

Sue - CDWM is this Friday. Our friend Nina is on first.

Cathxx

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: A bit of a worry

Postby karen17 » Tue May 28, 2013 8:06 pm

Hi Cathy, Hope Jonathans appointment goes ok tomorrow. Will be thinking of you both. I think that the folfirinox is just so aggressive that the side effects get worse after a while. Bob has now finished the 12 cycles and it was just beginning to take its toll. He has a full scan this thursday and results next tuesday. I'm dreading it.
We had a good holiday although the weather was not as good as it should have been. Didnt swim and dont think he would have risked it anyway. He's now full of cold which is getting him down.
Good to hear from Sue and Mick and I like the CDWM comments. I also am a fan so will look out for your friend on friday.
Karen xxx