Mouth ulcers

[Didge]

I have read advice before about what to do for chemo related mouth ulcers but it didn't apply to us then? Anyone? Also bf is schedled for targeted radiotherapy for his liver tumour. Never heard of that one either. anyone know anything about that?

[Guest]

Hi Didge,

Dad suffered quite badly with this when he was on Gemcitibine. He was prescribed Difflam oral rinse. It took a few days, but it helped him a lot. You have to get it from the doctors. Is he using a soft tooth brush as well?

Leila xx

[Slewis7313]

Hi Didge, I have not had any issues with ulcers so can't help. By targeted Radiothetapy, do they perhaps mean Cyberknife? It is quite new, but apparently very effective.

Steve

X

[Slewis7313]

Didge, Cyberknife is used within the NHS. This link may be of interest:

http://www.royalmarsden.nhs.uk/diagnosis-treatment/treatment/radiotherapy/pages/cyberknife.aspx

Steve

X

[Didge]

No, I don't think so Steve as it will take 4 weeks which rules out any of the new stuff and even the old stereotactic radiotherapy.

[Didge]

Well - a quick catch up. the mouth ulcers got so bad he couldn't swallow so I had to call an ambulance and he ended up in his local hospital who nearly killed him with the wrong injection so he discharged himself. He was unable to eat for over a week and lost a lot of weight. No more chemo now unless they can get him back on folfirinox which he did brilliantly on but it knocked out his bone marrow so they are unwilling but will consider it. Now waiting a further 3 weeks for radiotherapy on one of the liver tumours but I think that is too long to wait, especially with no chemo. I think the tumour will have too much chance to grow. He's in a lot of pain and on morphine but after 2 blood transfusions yesterday and today, is feeling a bit stronger at least. Didge x

[nikkis]

Hi Didge,

It's all such rubbish, the disease, the care, the constant fighting, my heart goes out to you both.

Remember others have had longer breaks from chemo and nothing has grown, so really hoping that happens in your bf's case.

Lots of love,

Nikki

[sandraW]

Hi Didge, I know what you mean about the wait, its endless and like you I worry so much about the tumours growing, which in Trevor's case they are.

I thought we were having a bad time but nearly killing him!!! how dreadful, there is just no hurry with things its as though they think we have all the time in the world, instead of the opposite.

I am glad he is feeling stronger, lets hope they can get him back on the Furry Fox again, our only option if we ever get that far is Gemcitabin, but as he is now not having this stent/drain fitted until next Tuesday, I just don't know how much strength he will have left. Fingers crossed for you both thinking of you, take care love sandrax xx

[jay]

Hi Didge,

Massive hugs, just makes my blood boil how we have to fight for the proper care, pain relief and the right treatment for our loved ones. Hope things are improving.

Love Jayne

x

[RLF]

Sorry to hear you're having such a struggle at the moment, I don't know why it's always such a fight. Mouth ulcers sound nasty and I really hope he can get some comfort from them very soon!

As others have said a few weeks isn't likely to change much but we've had the same worries about waiting so I know when the shoes on the other foot it's a difficult thing to accept.

I don't know much about radiotherapy other than he overall mechanism but it's used quite a lot so hopefully it will work too. Any ideas why they aren't ablating it?

Rob

X

[Didge]

Rob, he did have one liver tumour ablated but the other they said would be too painful as it was near nerves (which explains why he is in such pain now). It doesn't quite make sense to me but we are seeing the oncologist again tomorrow so hopefully will be able to ask questions. He's not feeling too bad at the moment as the mouth ulcers are gone and a new pain control regime is helping to keep him more comfortable. x

[Sueoliver]

Hi Didge I am so glad the mouth ulcers have gone! What a terrible time! How did you get on with the oncologist? I hope it went well.

I hope things are improving.

Love Sue x

[Guest]

Didge, your poor boyfriend. They nearly killed him?! Bloody hell, he must have been so scared and anxious. Can't say I blame him for leaving, he just doesn't need the stress. I hope something has been said about what they did, he must be terrified every time he goes back there.

I too hope things are improving for you both. I am sick of reading terrible levels of care, it is so disgusting.

Leila xx

[Didge]

Unfortunately, in the absence of our usual oncologist we were seen by a really arrogant consultant who basically said he didn't know why the radiotherapy was over 4 weeks and not cyberknife and almost sneered when I asked if it was because it wasn't private treatment. I then asked about the delay in starting and he said he didn't know why and didn't seem willing to ask until I said that the radiology dept said they sometimes can fit people in sooner if they are asked to be but in this case it hadn't been marked as urgent! Good news is bf has excellent appetite at the moment and pain under control so we're off out to a birthday party! xxx

[Didge]

Oh and by the way, Leila, yes he is thinking of making a complaint about his local hospital who gave him heparin when he was already in dire danger of having a bleed from low blood platelets!

[Guest]

I hope he does. Will they take any notice? Probably not. But he will feel better I am sure.

Hope you both had a good birthday party yesterday.

Leila xx