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In that paper tomorrow.

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Shewolf
In that paper tomorrow.

Many of you don't know me as I'm on the advanced cancer site. 
I've done a lot to pressure NICE to change protocols (successfully) regarding treatment breaks for cervical cancer patients. These were discriminatory before. 

I'm now, realistically unlikely to survive another year. My voice will be lost. It's up to you all to keep the pressure up. This article in tomorrow's express was written by a journalist who really understands how shoddily we are treated. Her contact details are in the article. 

https://www.express.co.uk/finance/crusader/1365956/cervical-cancer-treatment-drugs-medicine-claire-elliot

 

1/16Vaginal bleeding

12/16Stage 2b

Jan-Mar 2017 35 EBR 5 x Cisplatin

6/17 All clear

12/17 2.5cm tumour,incurable

3/18 7 x carbo/Taxol/Avastin

8/18 MRI CT-PET cancer free.3 Carbo/Avastin 11/18 remission

4/19 15mm endocervix recurrence

7/19 -8/19 5 x SABRE LINAC

11/19 MRI- treated area stable,but tumour growth at uterine fundus and full thickness of myometrium.

Surgical opinion 4/12/19 laparoscopy cancelled 27/1/2020 CT PET tumour 12.5cm,no mets possible Pagets disease. Surgery ruled out 28/1/2020 Biopsies taken

2/2020 started 6 cycles of Doxirubicin and carboplatin

7/20 tumour active again. Platinum resistant. No further treatment availabile. 

emmz13

Hi Claire,

All I can say is thank you for everything you've done and I hope very much that you will get the chance you deserve to try pembrolizumab. Much love and appreciation to you.

emma xx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

Shewolf

Thank you. 
As my Consultant said to me, patient power is the most important tool to levy against the current system. 

I'm fortunate that I'm a lawyer with a nursing background who is able to research and target the relevant people. It's so important we keep the pressure on as sadly too many of us die too soon, meaning we let the faceless bureaucrats at NICE and the MHRA off the hook. 

This week I rang NICE to ask why they were taking so long with their consultation on Pembrolizumab, when they were able to release an interim treatment list during Covid-19 tell the ago. This contained kinder treatments (mostly immunotherapy) for 23 other cancers but not cervical cancer. 

The project manager was more concerned about how I had got her number and that she 'doesn't speak to the public.' I reminded her she was accountable to the public .
There just doesn't seem to be enough pressure on them to act in an expeditious manner with a group of women who are resulting in numbers since the advent of preventative HPV vaccines. 

I'm waiting to hear from my MP this week. I'm not going to die quietly, 

Claire. 

1/16Vaginal bleeding

12/16Stage 2b

Jan-Mar 2017 35 EBR 5 x Cisplatin

6/17 All clear

12/17 2.5cm tumour,incurable

3/18 7 x carbo/Taxol/Avastin

8/18 MRI CT-PET cancer free.3 Carbo/Avastin 11/18 remission

4/19 15mm endocervix recurrence

7/19 -8/19 5 x SABRE LINAC

11/19 MRI- treated area stable,but tumour growth at uterine fundus and full thickness of myometrium.

Surgical opinion 4/12/19 laparoscopy cancelled 27/1/2020 CT PET tumour 12.5cm,no mets possible Pagets disease. Surgery ruled out 28/1/2020 Biopsies taken

2/2020 started 6 cycles of Doxirubicin and carboplatin

7/20 tumour active again. Platinum resistant. No further treatment availabile. 

FeelingTheFear

Hello Claire 

Thank you for continuing to draw attention to this important cause. I emailed my MP about the NICE guidelines and I got the following response, which was a reply she had received from NICE. I dont really understand what they are saying in this response, as it seems like a whole lot of waffle that still doesn't get to the bottom of why our cancer isn't important to them, and/or passing the buck to NHS England:

 

" This table is not designed to be an exhaustive list of the only cancer treatments available during the pandemic, rather NHS England identified a number of alternative treatment options, where they are available, to reduce the risk for some cancer patients during this period, but it does not mean that other treatments cannot not be offered. It was introduced to allow for greater flexibility in the management of cancer during COVID-19 pandemic to ensure clinicians have additional treatment options through this time. It is important to emphasise that the guidance is intended to provide a framework for decision making, but that any decisions about an individual must involve review and assessment by the relevant cancer specialists, based on their clinical judgement and knowledge of the case. Should you have any further specific queries about the table please contact NHS England, they will be better placed to respond.

In terms of NICE guidance, in 2009 NICE published technology appraisal topic on topotecan for the treatment of recurrent and stage IVB cervical cancer (TA183)https://www.nice.org.uk/guidance/ta183. In this guidance, we said that topotecan in combination with cisplatin is recommended as a possible treatment for women with recurrent or stage IVB cervical cancer only if they have not received cisplatin before.

We are also working on the following technology appraisal topics:

* Pembrolizumab with chemotherapy for treating recurrent, persistent or metastatic cervical cancer [ID3798]https://www.nice.org.uk/guidance/proposed/gid-ta10669

* Tisotumab vedotin for treating recurrent or metastatic cervical cancer after systemic therapy [ID3753]https://www.nice.org.uk/guidance/indevelopment/gid-ta10620 Finally, it is worth noting that our guidance does not cover every health condition, clinical scenario or treatment and treatments do not have to be appraised by NICE before they may be prescribed on the NHS.

Ultimately, health professionals would be expected to consider an individual patient's own circumstances, and weigh up the possible benefits and risks before making an informed decision about what treatment might be appropriate for them. "

I just want to add that I really admire what you do to highlight these inequalities and unjust treatment, it is all we can do, and I really hope you will get the opportunity to try pembrolizumab very soon. Huge hugs to you x

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Memagh

Claire thank you for all you have done and continue to do to help all cervical cancer sufferers across the UK. Keeping everything crossed that you get the chance to try pembrolizumab, it's the very least you deserve. 

x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved.

Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed.

Treatment plan 5 chemo, 25 extended field radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

February 2021 15 Month scans NED

Extensive bladder damage seen on mri and damage to sigmoid colon.

 

 

Southofthelake
Southofthelake's picture

Claire, you have done more for the cause than most, I think, and I thank you for your efforts.

Do not go gentle into that goodnight, indeed.

October 2019 - smear test

November 2019 - results back; hpv with severe dyskaryosis, colposcopy organised.

November 2019 - colposcopy, biopsied - confirmed abnormal cells

December 2019 - lletz done

Jan 2020 - confirmed cancer

Feb - confirmed stage 2b CC (updated info, staging changed to stage 3 invlving lymph nodes)

Treatment start March - 28 external radio/5 chemo/4 brachy

April 25th - finished brachy

July 2020 - MRI

Aug - confirmed cancer in lymph node

Sept 2020 - lymphadenectomy (unsuccessful)

Nov 2020 - PET scan - confirmed metastatic cancer -cyberknife denied - chemo only option

noodlesdoodles

Dear Claire,

I admire your sheer determination and campaigning action on behalf of all of us.Thank you so much.

The situation is disgraceful and I will be hounding my MP.Keeping everything crossed for you and hope your GO Fund me page makes treatment possible.

Never think that any action does not help. One of my all time favourite quotes is below.We can all make a difference.

Thank you. Sending big hugs.xx

Niki

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema
noodlesdoodles

It didn’t add the quote:

Never thing that a small group of determined, thoughtful citizens can’t change the world. Indeed, it is the only thing that ever has. - Margaret Mead 

xx

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema

More Information

Treatments for cervical cancer