To have the op or try alternative

I got another reply from a charity saying they only fund research not treatment

WHY ???

WHY 

WHY

WHY

???

Surely there is a gap in the charity market. Surely people want to raise money so that people can be treated?

A mate of a mate just succumbed to secondaries from stomach cancer and I'd have thought proton beam could have extended his life but he didn't get the chance, was just told,  sorry there's nothing we can do. 

What they usually mean is there's nothing available to us under the current budgetary guidelines ?  because we haven't invested in new treatments. 

I realise that if you want to cater for the millions of patients on the NHS you do need a one size fits all approach and there won't be time or cash available to try alternatives, whether they be a different approach with the available drugs or a completely different set of alternative treatments. 

BUT

Surely this is where one of the charities needs to step up.

What Chloecat is doing is research, it's what scientists do, use themselves as guinea pigs. 

  apply for a research grant !!!

Carolyn

xxx

Just curious do you know the cost of anastrozole in comparison thanks. 

Hi All

Thanks for the feedback.

jowoomot - have only, as yet, used the endocrine therapy to reduce and stop spread - which as we know was not working due to being on Letrozole for a year.  The Exemestane with Everolimus and the Lemon Mucilage is however working for me as I can feel the 'new area of concern' getting smaller after, now, only 8 days.  Such a big grin on my face when I felt it yesterday.  My preferred treatment is Sono-Photodynamic.  A photodynamic trial is running at the Royal Free Hospital but at the moment is suspended as Prof Keshtgar is ill and unfortunately all his registrars etc on this trial have moved from the department.  It is unknown when this may restart.  However they were trying to get NICE to approve lumpectomies rather than mastectomies which would also help with trial patient recruitment but has succeeded into Phase 2 of this trial. What this entails I haven’t been able to find out as all the locums I have seen have not been given details.

The link below will take you to the Daily Mail article on the trial.  It was published I think in November 2013. Unfortunately I would not agree to the mastectomy and didn’t want to mess up the trial by scarpering before the mastectomy and the Prof said I didn’t qualify anyway!

http://www.dailymail.co.uk/health/article-2439464/Photodynamic-laser-treatment-kill-breast-cancer-15-minutes.html

As to other treatments, Rigvir, GC-MaF – Rerum is its’ successor, CryoAblation (cold) and ThermAblation (heat), among others. ALL being used outside of the UK. HiFU I watched from a video by UK doctors/researchers on YouTube at a medical conference. This can give a 2 CELL margin with no surgery - not the 1cm margin as dictated by invasive surgery.

Argymargy – many thanks for clarifying the price/s. A question I will ask on the 18^th is how long will I be on exem. and ever. I have seen discussions elsewhere showing up to 18 months or more.

Carolyn28 – what a good idea about getting a research grant for treatment! I can but try.

Optimistic – last check on cost of Anastrozole was about £3.75 for a pack although some manufacturers are more expensive. I think some pharmacists through their suppliers are trying to source cheaper tablets so that they can get better margins between the cost the NHS pays to them for the supply.

Keep the feedback coming.

NHS pays £1.27 for 28 tablets of anastrazole.

Does anyone know is Exemestane meant to work better than Anastrozole. A friend has been prescribed this and I'd only heard of Anastrozole and Letrrozole. My cholesterol was a bit high at my last blood test and high cholesterol is a 1 in 10 risk on the Anastrozole packet don't think that's  the case on Exemestane does any one know anything more about this or the difference in these drugs. Thanks.

Hi Optimistic 

The main difference is that Exemestane is steroid based where Anastrozole and Letrozole aren't.

Exemestane (also called Aromasin) is often offered if patients are suffering severe side effects like joint / bone pain with the other two, but it may not help with any menopausal feelings :(

Hopefully a few ladies with experience of being on Exemestane or who have switched to them can help more ?

BCC has this leaflet about it -

https://community.macmillan.org.uk/cfs-file/__key/communityserver-discussions-components-files/38/bcc46_5F00_exemestane_5F00_2016_5F00_web.pdf

G n' J

Hi Optimistic

From what I've read (I'm no expert) they match each other in the results, they just work in different ways. 

Jo x

Hi  Chloecat! I'm absolutely intrigued reading your posts because I've never even heard of some of the treatments available! I suppose if your lucky enough to be near a larger hospital they have more to offer! I must say I fee like I never put nearly enough time and effort into the whole research thing when I was diagnosed 2 years ago! Same type of cancer as yourself! I simply went Down the mastectomy route! No questions asked!  Could I ask (and you don't have to say if you prefer not to)! But why did you not think a mastectomy was the best approach at the time for yourself? I'm starting to doubt my ow choices now! Take care and good luck with planned treatment! Gill x x x

Hi Newdawn

As with any new treatment it has to go through trials even if they have been approved overseas.  At least we can say that NICE are being thorough on this score but it just takes too long to get them to understand the potential benefits for all cancers.  Trialling them for use on these other cancers needs to be done and as usual there is a cost factor.  If you have the money then you can seek these abroad.

It isn't necessarily being linked to a big hospital that these potentially new treatments have arisen but through the internet.  Researching your own cancer can give you more information than the short amount of time your consultant, in the UK, can give to a patient.  I know just how fraught my long waits at appointments have been. 

Initially they wanted to do surgery (lumpectomy) followed by radiation to which I said No.  Was put on endocrine therapy (Anastrozole).  They felt last year that this had stopped working so put me on Letrozole for a year which didn't do anything.  Hence the Exemestane and Everolimus (with Lemon Mucilage).  I will be asking my oncologist on Wednesday about the Lemon Mucilage.  Interesting addition this Lemon Mucilage.  It is simply high dose lemon with fibre being used as an anti-inflammatory but will ask questions of the oncologist on this and how it became to be included in this treatment.

Mastectomy only offered as a direct result of the extra 2 lymph node 'tumours' in the armpit as well as the 'area of concern' (since I haven't had, and I won't have, the stereotactic mammogramme biopsy). They did actually put forward a mastectomy when they said they had 'found' something at the 10-11 o'clock in the same boob way back.  But again I said No.  (It was only microcalcifications though they believe these to be a precursor to a tumour - nothing happened here yet.)  Biopsy, very likely would be done with a fine needle aspiration which I will never have that again - so much bruising and I think resulted in the second armpit 'tumour' through 'seeding'.  Any invasive surgery whether minor or major comes with risks!  In all instances it is hoped that your immune system gets you through.  It is also said that at some point in the future surgery will only be used as a last resort, not initially.  Surgery has its' place but in my opinion not for breast cancer.  The argument for surgery is that it lessens the cancer burden so that the immune system can begin to deal with circulating cancer cells and mop up any residual cancer cells at the excised site/s.  Medical treatment here is chemo and radiation but ultimately it is your own immune system.

Don't doubt your own choices, ever.  Work to ensure they were the right choice by keeping yourself well.  Being absolutely selfish here is the key.  Look to your lifestyle and make changes for the better, get rid of anything that is giving you stress.

Thanks for your good luck with the planned treatment.  Appointment on Wednesday 18th will be interesting.  Wonder what they will be looking for in the blood test but I will find out.

Love and hugs to everyone

Hi chloecat45 thank you for your posts although not a route I may take as I had a very aggressive tumour it's very interesting to read alternatives and thought provoking which has to be a good thing. Can you tell me if you know how Er positive you are either Allred score or percentage I was just curious reading the anastrozole and Letrozole did nothing. Thanks again. .