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General Discussion

Sasa

Not sure how I feel about this......

Well, it's good news chaps, and Mark has been signed off for a break following 12 rounds of folfiri and avastin. Hooray ???????

But during the consultation Mark asked his onc if he could be prescribed LDN for his break, as it had had such amazing results. He was also bolstered by the fac that it was a trial at St George's and the Prof running it was known to our oncologist.

He wasn't keen, and explained his reasoning.... basically, as bowel cancer is so diverse, unless the patient keeps on doing what they've been doing, the job of the onc (as he sees it) is harder as you never quite know what is working and what isn't.

Whilst I totally get that, I also feel very strongly that there is a lot out there that will help. Narrowing your options seems daft, especially with things that are being developed that seem to have good results.

We do feel like we have scored quite a victory though as onc has agreed to read up about it with a view to prescribe it (possibly) next time we see him.

He's a great onc and we trust him so this will be interesting, but if they like to keep patients 'doing the same thing' no wonder they don't advocate improving your diet etc.

That thought bewilders me!

Sarah

mem

It’s great to hear that Mark is doing really well @Sasa and I hope you both enjoy your well earned break. ? :x::x:

Highkaren

I'm with you @Sasa, if you always do what you have always done then nothing will change, after all you read so much about chemo therapy stops working after a while of the same thing...in the end does it matter what works so long as it does...

LABluebell

@Sasa Really thrilled to hear that Mark's going to get some down time. Enjoy!! :x::x:

charleyb

@Sasa its brilliant news that you both can have a break and that Mark is doing so well. I`m not sure what LDN is sorry but i`m glad Onc will consider it. :x::x:

Sasa

@charleyb, LDN (Low Dose Naltrexone) is something that boosts your immune response and I believe this is what they have used to change AIDS into a manageable disease rather than a terminal one. It works very well with cancer in trials too, and Marks onc knows the prof who runs the trial.

Bit of a no brainier as far as I'm concerned. Just seems like madness that they don't want you to help yourself as it could throw them off the scent, so to speak.

Thanks for your kind words, we are also looking forward to a break from chemo.

Sarah :x:

Wendywood

Really interesting reading up about LDN via Web searches @Sasa. Especially interesting as St George's hospital in Tooting (LDN trials) was my local hospital in London, before I moved up to beautiful Cumbria. Small world!

Something that boosts your immune system has to be a good thing :) I am going to further research on LDN and hopefully take in printed info for my Onc to read.
#nostoneunturned

Thank you for mentioning this....
:x::x:

Highkaren

@Wendywood,@Sasa@charleyb @mem
I've been taking LDN for 3 months now, I get it on prescription via Dixons chemist in Glasgow, low cost. About to visit
the Oncology Clinic In London for re-purposed drugs - Metformin, doxycycline, Statin and Mebendazole , whislt im on a chemo break and waiting for the PIPAC referral to Cardiff

Baxter2

Great new @Sasa!

A chemo break sounds lovely!!

Best wishes

K❤️????

Chris82

Great news that treatment has worked and he’s getting a break. I’m interested to hear how the LDN discussion goes.

GD62

Naltrexone is an interesting opiate antagonist and I used to prescribe it with methadone patients to prevent them from respiratory failure if they over dosed. In Manchester it used to be dispensed from specific pharmacies with water for injections, drug paraphernalia, clean syringes as part of a harm reduction programme against aids and deaths from over dose. Interesting that LDN has a new usage and worth considering. Dixons Chemist in Glasgow dispensed my first prescription there ever in 1985, a blast from the past...:x:

Sasa

Dear @Wendywood , @Highkaren , @Chris82 , @Baxter2 and @GD1962 ,

Update on the LDN discussion was that Marks onc wouldn’t prescribe it. Point blank! He knows that Mark can get it anyway but won’t endorse it. He says that the prof who runs the trials could be attributing improvement to disease to the LDN without knowing if it is due to that or to chemo. The usual stuff really and we expected as much as he likes to toe the party line!

So Mark got in touch with the prof direct, who is happy to provide a prescription but only privately following a £500 consultation. ?. It’s only available on the NHS for a specific type of melanoma. We are currently awaiting a reply from Dixon’s as to whether we can obtain a prescription from another source. Karen may already know the answer to this question anyway .... ?

Mark is still on a chemo break and is on the COC protocol, however due to lots of new aches, pains and gut cramps has stopped taking them till he hears back from the doctor there who may plan a more gradual introduction to the drug combination.

But he’s still doing the Korean acupuncture .....

Sarah :x:

Wendywood

Thanks for the update @Sasa on the LDN. A pity Marx's onc won't prescribe it. I am quite sure mine would have the same reaction. Interesting to see what Dixon's will say!
@Highkaren how did you manage to get a prescription?

Wendy :x: