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

Re: A bit of a worry

Postby J_T » Tue May 28, 2013 8:20 pm

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

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

Re: A bit of a worry

Postby Sueba » Wed May 29, 2013 7:59 am

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
X

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

Re: A bit of a worry

Postby Cathy » Wed May 29, 2013 6:16 pm

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

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

Re: A bit of a worry

Postby J_T » Wed May 29, 2013 8:49 pm

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

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

Re: A bit of a worry

Postby karen17 » Wed May 29, 2013 10:19 pm

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

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

Re: A bit of a worry

Postby Cathy » Thu May 30, 2013 2:50 pm

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

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

Re: A bit of a worry

Postby Cathy » Fri Jun 07, 2013 1:47 pm

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

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

Re: A bit of a worry

Postby J_T » Fri Jun 07, 2013 7:03 pm

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

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

Re: A bit of a worry

Postby Bee » Fri Jun 07, 2013 9:31 pm

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

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

Re: A bit of a worry

Postby karen17 » Fri Jun 07, 2013 11:18 pm

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

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

Re: A bit of a worry

Postby Cathy » Sat Jun 08, 2013 1:14 pm

Hi all

Thank you for your kind replies :)

Well, he's home! The hospital could find no infection and think he felt so poorly because of the chemo and with his blood sugar levels being erratic. They also said they think his diabetes has been caused by the steroids (you can't win) and that when they come out of his system that he is unlikely to need insulin. So that was good news. He saw his diabetes nurse again and I've been told that they will be adjusting his medication with any more steroids.

Jonathan himself still feels totally wiped out tho is a little better today - this is definitely the worst fatigue he's had and yesterday was saying "no more". We'll see. He could do with a break and we've got our 2 weeks holiday still firmly on the horizon so hopefully they can organise things so he can go away without feeling poorly and relax.

You're right Bee re juggling work and home life. For me at times that has been the most stressful thing. The mortgage still needs to be paid tho l've managed to get an arrangement to work from home 1 day per week (Karen-is that mobile working?) which is great Jonathan's work was always ad hoc as he is an actor - currently "resting".

That stupid wheelchair. Falling out of it so dramatically (helped by me shrieking "S**T!" In a very unladylike fashion) was Jonathan's highlight of the whole experience (Julia - you should try it). It was a nightmare to manoeuvre which meant that he was parked in some very peculiar positions as we moved thru the various stages of A&E - largely getting in other people's way or facing in odd/inappropriate directions. Actually.. now I come to think about it.... he declined my offer of finding a wheelchair when I picked him up again. Hmm.

Hope Bob is feeling better today Karen and you didn't have another night of being entertained by drunk people.

Hope you all have lovely restful weekends.

Xx

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

Re: A bit of a worry

Postby J_T » Sat Jun 08, 2013 5:37 pm

glad to hear Jonathan is safely home, not so glad to hear he is still very fatigued :(
Hoping he picks up a bit over the next couple of days. Hope the blood sugar problems sort themselves out. I'll think we'll give the extra steroids a miss next time!

Those hospital wheelchairs! The first one I tried to wheel him went from left to right in a zig zag until I turned it around and pulled backwards, that seemed to work. The next one on another day I pulled backwards and it didn't want to know so I turned it round and hey presto off we went! Who designs these contraptions? People who don't use them obviously!

Best wishes to everyone x

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

Re: A bit of a worry

Postby Bee » Sat Jun 08, 2013 7:51 pm

Hi Cathy, I have to confess when you said he is an actor and describing the falling out of the wheelchairs "scene" , it did make me smile. At least he saw the funny side too!
You have to laugh I guess, in order to maintain normality, it is so hard isn't it! Three days after our diagnosis I watched my son pla rugby as we always do every week and it was all normal, except it wasn't, I just wanted to scream at the world that nothing was normal anymore!
Hope you have managed to relax a little this afternoon x
Last edited by Bee on Sun Jun 09, 2013 12:17 am, edited 1 time in total.

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

Re: A bit of a worry

Postby karen17 » Sat Jun 08, 2013 9:46 pm

So pleased to hear Jonathons home. You get no rest in hospital so hopefully he will pick up now he's home. Keep looking forward and planning holidays.
We managed not to spend another friday evening in a and e with the drunks. We had family to stay for the weekend and have spent today on the lovely north norfolk coast. Now back to watch BGT!

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

Re: A bit of a worry

Postby Cathy » Sun Jun 09, 2013 1:41 pm

Hi all

Well, yesterday was my first taste of being a proper full time carer. Jonathan stayed in bed all day and I was run ragged by the end of it. All those stairs!! Good for my bum I guess.....

He is still wiped out today and wondering how he will manage to get to the oncologists appointment. Ive said we'll cross that bridge when we come to it tho am not sure what the answer will be. Hopefully he will feel better later and has agreed to come out with me to the shop around the corner and get him something to eat that he fancies as an experiment.

I'm mystified myself. I am sure it must be related to blood sugar but I don't understand why he is so wiped out now he's started to control it. He actually seems better when it is higher. I'm going to ring the diabetes nurse tomorrow again for a chat.

It's odd finding humour at dark times... Maybe it's about staying sane? The day he was diagnosed just before Christmas we'd so not anticipated bad news I'd gone to a meeting in another town for work and so only got the terrible news on the train on the way home. Of course, the signal kept cutting out every 30 secs as he was telling me then I couldn't get back to him as he hadn't realised I'd been cut off so was still talking to me on his phone. That happened time and time again. I don't need to describe to any of you how awful that felt.

Anyhow, earlier that day before that conversation I'd planned to pop to our local supermarket (Asda) when I got home for a bag of salad and had had this mantra in my head all day "must go to Asda, must go to Asda". When I finally got home, in shock, numb and dazed, I still had the same mantra so went to Asda. Afterwards, home again, I discovered I hadn't bought the bag of salad but an enormous jar of Quality Street that had caught my eye as it was on special offer. I don't even really eat Quality Street (apart from the purple ones). They're still on my kitchen shelf to this day and I point them out to friends. Anyhow, I mention that as it tickled me despite it being I think the worst day of my life.

I hope you don't all think I am weird now.......... :)

Enjoy your Sunday's everyone. Karen, glad you managed to avoid the drunks and Bob was ok.

Xxx