General Discussion

david watt

Radiographer taking the piss again

Hi, he's been OK last two ✌️ ctscans, but this one hes again said I am full of shit , (faecally loaded).
Just had my 23rd cycle of Pembro, and am relatively good all things considered, 16 months into a terminal diagnosis. It really stinks that this treatment still has not been approved for the NHS for colon cancer, but has for lung and skin cancer.
Best wishes David

Jaap

Fantastic results @david watt.
Super to hear you are feeling relatively good as well.
I think there is a Pembro trial going down in the UK. Hopefully it yields the same results as you have had on it and gets approved for use on the NHS as you said.

GD62

Marvellous news @david watt :)

david watt

@Sean yeah someone else posted about it. My view is to try anything that can help me to get through more time in a good state. There are so many breakthroughs happening each week. If I can be around in 2 or 3 years, there will be a much better range of trials available. Eating tree nuts 🤪, odd aspirin, vegan diet despite the fact I love meat 🥩, avoiding alcohol as it weakens the immune system.
With so many new breakthroughs it is a shame that it takes so long to get to patients in terms of treatments. How many thousands of women had chemotherapy for breast cancer that didn't need it?

Sean

yes that news about the breast chemo is just ridiculous isn't it. Tho I suspect there's many on maintenance who may not need it.
Kinda what the registrar said to me after telling me it had returned already. "hang in there, there's lots of new stuff coming"
Forever hanging in there huh

Only now am I realising how crap my c.t scan reports are.

david watt

@Sean do you get paper copies of your reports to read through? Everyone and every cancer are different. All you can do is try your best to recover and hope that things work out. At the end of the day we are all going to die, just a case of how and at what age, for younger people it is particularly sad 😔 as we have had less time ⌚ to live our lives and see the world. Some people go very quickly such as jen82 and nothing seems to work, some can hang on a few years. I want to live as long as possible providing I have a good quality of life. Once things get really bad, pain wise and quality of life as I have no kids or wife I will probably try to take matters into my own hands. With liver spread the main indicator that time might be running out is a rising bilbrin level which should be recorded in your regular blood tests. Best of luck 🤞

Sean

@david watt no i dont get any of that. There was simply a few lines that say it's returned and im to do more chemo. Asked again today for the sizes and they still dont have them. It matters to me now.
They are stretched massively there so i dont dig them out too much, but I think its bad form. Tho they did agree to put a request in for Sativex for me, so that's something.
I miss Jen. She was so pleasant and bright, just a cruel world when souls like hers are hurt. Im glad the oil helped her get out of the house.

Baxter2

Hi @Sean,

If you're struggling to obtain the information regarding your health, you can request a full copy of your records and all scans, reports etc. Hopefully this won't be neccesary as there will be loads of information there you probably don't need but it's useful to know. Perhaps put something in writing to request all copies of correspondence and reports from now including the recent stuff?

I'm having a scan and consultation on Thursday. My oncologist will have a copy of the report there to give me once discussed, as he knows I need to read and re read it numerous times in order to absorb all the information.

Best of luck with this,

K💛💜💙💚❤️

Sean

Thanks @Baxter2 Hopefully I wont need to do that. Baffled at how it varies so much across the NHS. and seemingly different attitudes towards these reports we get.

All the best for Thursday K!!:x:

Baxter2

Thanks @Sean!

I'm sure polite persistence will pay off for you!

Loads of love,

K💚💛💜💙❤️

Ally13

@Baxter2 That’s good information. I didn’t know it was possible to get copies of ct results. I’m going for results today, and, as you know, previous information regarding fractures during chemo was withheld. I will ask for a copy of my ct in future. Might have a fight to get it though.
Good luck for your scan on Thursday. I’ve waited 3 weeks for results, and had to check they would be ready in time, due to lack of radiologists.
:x::x:

Baxter2

Hi @Ally13

Yes, anybody can access their full records and scans on request but not everyone wants to or requires to. In my opinion, it's far better to have a good trusting relationship with your doctors and obtain copies of letters and reports as you go along.

I'll have everything crossed for your results today 🤞🤞🤞I believe there's a national shortage of Radiologists 😕

K 💚💛💜💙❤️

Ally13

Thanks @Baxter2
:x::x:

DMR700

@Sean how did you go about requesting sativex? Let us know if you get it!

Sean

Easy @DMR700 I already had a sativex that I used for holidays. I brought it in too ask them to get me some more - they had never even heard of it! Sheer madness I tell thee! Will find out more Thursday, if I remember!

@david watt whats next for you mate? we just got the cetuximab funding back, again!

david watt

@Sean usual, ctscan tomorrow providing it is OK, then carry on for another 9 weeks. Good that you got the cetux back, does the rash come back mean that it is working?

DMR700

@Sean that’s good you got the Cetuximab back!!

I’ve never mentioned my “extra curricular medication” 😂 might just chance my arm! Asked about that first week pre-chemo CEA drop today but the CRN just waffled some spiel about fluctuations... I have my first scan next weds so might just rattle everything between now and then!!!

GD62

Hi @david watt and @Sean

Thanks for sharing your information, and really sorry that you two lads have had a crap time so early in life too. I just think you are amazing how you cope and fight your corner against the system. I must admit I'm not expecting great things for myself in the coming months but have already booked my third holiday one in July and Spain in October.

Doing like you said David walnuts, cashew nuts, aspirin, turmeric and looking into itraconazole which I prescribe all the time for blokes with intertrigo in their groin and bullocks. Will speak to my oncologist as we've nothing to lose except a 'no'.

Positive healing and best wishes :)

david watt

@GD62 I am also on probiotics 1 pill 💊 a day after evening meal and am now trying japanese seaweed, so as I understand it a wide range of gut bacteria is good for having a strong immune system. The Japanese typically have a better life expectancy and relatively low rates of colon cancers. Recent study seems to indicate positive results on mice, now I am the human Guinea pig 🐽