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A bit of a worry....


Cathy
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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

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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

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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

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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

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PCUK Nurse Jeni

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.

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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

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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

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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

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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

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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

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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

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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

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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

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  • 3 weeks later...

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

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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

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Hi Cathy, I'm going to post more fully about Ray's last therapy (Cycle 3) on the other thread.


Sorry to hear Jonathan is feeling a bit rough but I'd say he has done well to get this far and been so well (probably no consolation to him!). Fatigue is definitely the worst and that just from being an onlooker.


Ray got thrush on cycle 2 and we were given Nystan and that with the Difflam mouthwash seemed to do the trick. Ray got cold sores too.


Ditto the bitter melon here. To say Ray isn't keen is an understatement lol. I don't get it myself, I'd try anything myself!


Karen, will be keeping everything crossed for you and Bob. We have yet to have our first CT scan and I'm already dreading it. Got to be done I suppose.


Best wishes ladies x

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Hi

Hope all goes well with the scan Karen and glad you managed to get away on holiday.

Mick has finished chemo,hurray!!it was a lot lot harder to tolerate post op than before and he suffered much more with nausea, and his hair started dropping out in chunks early last week,to shave or not to shave is now the question!!!

So were back to the hospital in 3 weeks to check he's recovering from the chemo and then a scan in August which will be 3 months since his last one.He seems to be "unchartered territory"in the words of the oncologist,he hasn't given Folfirinox post op before so he said we will see how you get on.

We've never had such a long break from treatment before so I'm not sat here with holiday brochures!

Looking forward to watching Come Dine With Me!!

Sue

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Hi all,


Thank you for your replies. Isn't this forum great?


Well, we saw the oncologist today. The "extra" drug was just oxalyplatin given over a longer period of time to try to couteract tingling. This hasn't worked so the oncologist wants to (in fact has) removed oxalyplatin from his folfironox for tomorrow and has said he should have it no longer due to the fact that he thinks Jonathan might be starting to have neuropathy. I'm not entirely happy about this - couldn't he have a reduced dose? He will have the other 2 drugs as normal. I do like the oncologist that we saw but am now wondering whether I need to get a second opinion from someone else in his team.


We get his scan result on the 10th of June. I too am dreading it. At least his blood tumour markers have come down again which is good.


Bizarrely blood sugar isn't something that is tested as a matter of course but my complaint today about Jonathan feeling thirsty and his sore mouth and throat prompted an immediate blood test which showed very high blood sugar levels which I guess have peaked due to the increased amount of steroids he's taken (but I guess might have been high anyway as part of a longer term condition we were unaware of until now). Good news is he is to get pills (more pills) to help with that which, we're told, will really help his fatigue (so hurrah for that) and hopefully avoid a sore mouth (hurrah again).


Karen - I'm glad you had a good holiday but sorry Bob is full of cold. We're going to ask about pic line protectors tomorrow so will let you know if they recommend anything for future reference. Will be thinking of you next Tuesday.


Julia - we've been thinking about Ray and wondering how he was getting on this time. Thank you for Nystan recommendation - the oncologist suggested it himself just as the words were coming out my mouth. LOL


Sue - fantastic news!! (about the chemo - not the shave dilemma). You deserve your break so I hope you find somewhere wonderful.


Yup - CDWM Channel 4 on Friday. Now I've told everyone I hope it isn't too eccentric (although they do tend to be the best ones)..


Cath xx

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Hi Cathy, is Jonathan still on 100% of the other drugs? It does make you feel a bit wobbly when they reduce the dose doesn't it?


Ray's Folfirinox was reduced to 75% and then last week they reduced Oxaliplatin to 60%. The oncologist came and explained it all to us and we were happy with his comments. There's no point taking the full wallop if you're going to feel grimmer than grim, so I guess we have to trust them!


I've heard (but don't have a clue really lol) that the tingling thing can be quite nasty so its probably best.


Wishing you all well.


Julia x

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Hi Julia,

Bobs folfirinox was reduced to 75% at cycle 2 because of the neuropathy. He has stll suffered with tingling when its cold but I,ve heard that some people lose complete feeling in their fingers and toes so guess it's for the best. The worst thing for Bob has been as he calls it the 'cardboard' tongue and honestly this is not due to my cooking! I do watch CDWM for goodness sake lol. We are hoping that now he has finished chemo the taste buds start to kick in again. Hope Rays next chemo goes ok xxx

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Hi Julia and Karen.


Thank you.


I think his irinotecan was reduced a little after the first time but is still on 100% of 5-FU. I am going to see if they will reduce - but not get rid of entirely the oxaliplatin to see if that works.


And, yes, neuropathy was suggested as the reason. Our oncologist claimed that he had seen people "crippled" by taking it too much. It's about finding a balance I guess but he was very insistant we mustn't have it this time.


I'm sure the cardboard tongue will go - it seems most side effects diminish and disappear after chemo finishes.


Jonathan has just finished his 8th chemo without the oxaliplatin and reports no tingling. :|


xxx

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Hi all


Thought I'd update on this thread.


At the moment, as I write, Jonathan is in hospital, coincidentally only a small number of days after Karen's Bob was admitted.


On the "diabetes" thread I said how wiped out Jonathan was - he's just been so sleepy this time around. Yesterday morning he announced he felt a bit better so I went trotting off into work leaving him in bed. Later he'd got up and gone downstaris to get a drink and struggled to get back upstairs (on hands and knees) and at the top, passed out for a few seconds then clambered back into bed. He texted me this news while I was at work. I rang the diabetes nurse who rang him and spoke to him (and told him to stop the insulin) and got a couple of friends locally to pop in to administer biscuits (the nurses suggestion) and went home.


When I got home he seemed cheery but very sleepy but I felt unsettled as his blood sugar reading had still been high, he reported that he hadn't been to the loo for a couple of days (for a poo) so took his temp and rang his hospital. His temp was raised at 37.5C so they advised that he should go into A&E. So I bundled him (complaining bitterly) into the car and took him there. He was too fatigued to walk to the A&E unit so I found a wheelchair (that wouldn't steer forwards so I had to pull it), got him in it and started pulling him, backwards, at some speed, towards the unit (and I can tell you - he is no lightweight!). I managed to find the only pothole in the road and over he went, backwards onto the road with his legs akimbo and all his stuff tumbling on top of him. Oddly this made him laugh for the first time since before I'd told him I was taking him to A&E. Some kind passing man helped me get him back upright and off we went again, backwards.


To cut a long story short, they were very good and did lots of checks and decided to admit him. What was odd was that they said he was really dehydrated which I thought odd as he has drunk loads of fluids (although not eaten tho for a couple of days)so they gave him some antibiotics and a drip and he perked up almost immediately. And he did look better.


They think he might have an infection, possibly on a lung as they said they could hear "crackles" which might be an infection or might not. His chest xray showed nothing they said - and he doesn't have breathing problems or a cough so they aren't sure.


No idea if fainting relates to diabetes or not but he is OFF insulin for now (as he isn't eating all that much) and they have told him that they think the blood sugar issue WAS the result of the steroids (not sure how you can tell that but there you go).


I have to say, the lung thing does worry me. It was clear in his last scan and he has always had a "crackle" when he breathed (a smoker!) so hopefully nothing more than that. Scan results Monday..(gulp, again)


He rang me a little earlier thinking he was going to be discharged and I definitely got the feeling last night that it was likely just to be for one night. We do have a little communication problem - the pothole fall resulted in b**gering the screen of his phone so I'm sitting here waiting to hear an update.


I'll update more news when I have it.


Hope everyone else is well?


Cathy xx

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Wow Cathy, that all sounds a bit traumatic! Saying that, we have been through similar but without me chucking Ray on the road though lol!


Sorry to hear Jonathan is feeling so poo! Sounds similar to how Ray was last week, culminating in his fall in the kitchen, his ribs are still recovering! We, though, have no idea whether blood sugar levels have anything to do with it (these will be checked next week). Interestingly though it was Ray's first time at taking the extra steroids, so makes you wonder if these are the culprit, seems like no-one really knows?!


Must be a worry for you whilst you are working. We are lucky in that we were both able to retire early so have no such pressures regarding leaving Ray alone.


Hope Jonathan's discharged and gets home to his own bed pronto!


Chin up kidda!


Julia x

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Hi cathy,

What a day you have had but it sounds like you were very on the ball and did all of the right things, difficult when you are trying to juggle work amid home life!!

I hope Jonathen continues to improve and as Julia says gets home soon, as for you I hope you manage to get some sleep tonight,

Take care : ))

bee

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Oh Cathy so sorry to hear Jonathon is feeling poorly. How similar to Bob though! He was also dehydrated but don't know why, he drinks enough. Funnily enough its friday night again and he has just gone to bed saying he does'nt feel great. Temp is up again so I guess I will be checking it again later and hoping we dont need a moonlight flit to hospital again. I think we should have been given antibiotics to bring home instead of just 24 hours worth.

I know how hard it is dealing with all this when you are working. I work full time too but luckily am community based with base being 6 miles from home. I can also mobile work 1 day a week. I hope you have colleagues who are as supportive as mine are, don't know what I'd do without them.

Anyway Cathy take care. Fingers x Jonathon will be discharged tomorrow and again good luck for the scan. Will be thinking about you both.

Ps - I'm so glad we are all retaining a bit of a sense of humour. I likes your description of transporting poor Jonathon in the wheelchair! Sure he didnt though, bless him!

Karen xxx

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