Is there an alternative!

Hi Vicky 

You are in a difficult place as you can only support and care for your husband. 
My husband has supported my choices and loved me through it. There’s was just once when I said I didn’t want the operation I saw the pain on his face. This stopped that choice and I went for it. 
Maybe the oncologist will have some good advice 

Sorry I’m not of much help. 

Thanks, Artsie!

Hi Vicky 

It's easy to loose perspective.  Chemo is a lot less painful than a Root Canal at the dentist and a few months after finishing treatment functionality will improve. 

After 3 cycles a PET scan will hopefully show improvement in FDG avidity. Why not ask for one? There are other measures ....CEA tumor markers. They are usually measured at the beginning and end of treatments but as they only cost 10 quid extra on blood tests why not ask now to see if the treatments are working. 

Practical tests might inspire some extra hope and willpower.

I received a diagnosis 11 months ago immediately classified myself as DOA, made arrangements for termination etc etc.

Remarkably consuming 486 grams of Xeloda, radiation up the Wazoo and that ghastly Oxy means that I can now have a Stoma op on the 16th.  I'll be asking to go back on Chemo in the New Year. 

George Alagiah has gone through 17 cycles over the years.

Don't be disheartened. It's a rocky road. If your husband believes it's working that will perk him up. 

Thank you Anthony!

He had a CT scan 2 weeks ago is this the same as the PET scan you mention? His bloods, Kidney and Liver function have been good up until now. It was the Wednesday after his last Oxy infusion the previous Friday that he really started to feel shit, about 2 weeks ago and his mobility started to suffer through it. Before that he was beginning to walk again as more or less normal and he had been trying to get back to this for months after his operation to remove the tumour. He has a stoma fitted already got this done last July and manages ok with it. They upped the Capecitabine and Oxy dosage at the beginning of cycle 3 and he got through that ok but don't know what happened at all during cycle 4. It's the walking thing that's really getting to him as his balance is slightly off too. His vision was blurred, and he went to the opticians last Thursday and he has been prescribed glasses he needs to wear constantly just now but again, don't know if this is a side effect of the chemo. He is worrying about the results of the scan too so I can just assume that this is getting to him too obviously. When he gets blood tests on the blood form it has marked CEA, so I take it they are testing these as well and last time the oncologist said his bloods were good and never really elaborated on that. I know I should ask but feel they may come out with some terminology you don't understand then you have to ask them to explain in `idiot speak` does that mean they're up or down etc. Yes, it is a rocky road and hopefully we will have some positive news on Thursday. Can't come quick enough but then again wonder if we actually want it to come. Thanks. 

Vicky 

Hi Vicky 

A CT scan would be for a torso segment...say liver...pelvis .PET are used for whole body.

Both types of scan receive a narrative review signed off by the Radiotherapy specialist. Ask for a copy to be printed whilst you listen to the Oncologist burble on. The latter will.be iteratng the narrative supplied to him.

As for CEA values ...zero to 5 is normal. That means the tumours are not spitting out nasties.  From memory...but Google it.. anything over 25 indicates possible extensive disease.  I started at 96 hence expected to die within 20 months of diagnosis per membership of that data series.  

You can ask for a longitudinal data series for any measurement from the bloods. UCH in London has an app where each patient can access all this guff.. so it's easy.

CEA is an indicator. It has problems but then everything else has.

I whined to my Oncologist about the pain from Oxy and he offered to change from Capox to Folfox.  There are disadvantages with the latter as you have to wear a Flask pump for a while. A friend told me it's like going camping.  There are no free lunches. 

If your Oncologist is aware that you need data to generate morale they will probably be more forthcoming. 

Stay positive. I keep a vision of what I want to do when this nightmare ends. Keep your dream at centre stage.

Thanks again Anthony!

Yes, the CT was for his chest pelvis and abdomen. Where are you are you in England? only thing is I don't if regional healthcare is the same i.e. NHS England may differ from that of Scotland where we are, and I don't actually know if they make scans and things like this available to patients baby scans yes, but don't know about things like that. I don't know how high his CEA levels were the surgeon only told him in her letter they had risen `slightly` so by that I gather was over the limit of 5. There's lots of things we want to do but I can't even think of Christmas just now I know that sounds really stupid but usually at this time of the year I would be busying myself to prepare for that. This time last year we were just preparing ourselves for his operation in January this year and things were bouncing along nicely. What a difference a year makes I know we need to try to stay positive we do our best but its really hard. He's not his usual jovial self although he's trying, and this brings me down as well I just hate seeing him this way.

Hi Patty

Dorry for getting your name wrong.  I'm in London.

There is a UK legal entitlement to your patient record. It's probably pointless asking for the pictures..although I obtained my entire record. The hospital you visit will no doubt use proprietary software not readily accessible to mortals.

The one page interpretive summaries will be in English albeit using technical jargon. and can be provided immediately at your interview discussion. Just ask for a print out and explanation. 

Incidentally  I record all interviews on my phone after securing permission.  Chemo brain fugg ,anxiety and waiting time act against clear appreciation...at least for me. So I replay, look up the terms and review. It a measure of returning control.

Things can always get worse but your Oncologist is there to help. Fingers crossed for you. 

Thanks Anthony!

Don't want things to get worse- obviously. I wouldn't have a clue with the technical jargon, and neither would Jay. I'm `his ears` at these oncology appointments and sometimes even what the oncologist says tends to go over my head, but I've always got my notebook with me to write it down or he will say something that will stick in my head, and I'll remember it.  His oncologist has more or less gave him not glowing reports, but ones that have been encouraging for him and I don't for a minute think it would be in a specialist's best interests to tell you a load of garbage and give you false hope. They would be more likely I think not to disclose any information on the patient's illness, and not commit themselves to say anything they were unsure about themselves they'd be sued left, right and centre I would think. Well thanks again for your time in replying Anthony. I will be having my fingers, toes and everything else crossed for Thursday I think. Take Care. 

Vicky 

I would speak to the oncologist regarding reducing again, or a pic line maybe. 

I just wish I could get some treatment as my oncologist has said no treatment as I’ve no symptoms even tho I’m stage 4. 

I’m considering second opinion at this stage. 

Big hugs to you and Jay. 

Thanks Kath! 

Head all over the place again. Just want Thursday to hurry up and come because of that this week will drag in. So sorry they're not even going to consider you for anything. But that is so weird! you're stage 4 with no symptoms?? Hope you get your 2nd opinion. Take Care

Vicky xx