AVASTIN on NHS - Maintenance

Please feel free to read, share your thoughts, your stories and connect with others!
Hanksy
Posts: 15
Joined: Thu Jul 07, 2016 2:19 pm
Facebook Username: katie.hanks

AVASTIN on NHS - Maintenance

Postby Hanksy » Tue Aug 02, 2016 4:52 pm

Hello

Can anyone offer advice for funding of Avastin for maintenance purposes from NHS in England? My husband is receiving it now as first line treatment along with 5FU & Oxcilplatin. We are moving back to the UK following his 12th round and we were hoping that the UK could match the treatment that the US may offer. However after talking with the UK ONC Nurse she said their maintenance programme maybe a case of come back every 3 months for a scan!!! Im very alarmed by this as before chemo he was told he wouldn't last 6 months and now his prognosis is 'at best 2-3 yrs' so I dont want to shorten it by moving home to UK, although we have made steps and booked flights etc so it is all systems go!

The UK nurse did say that his age & the fact that he is receiving it now may help his case, but who knows. :?

Along with 16 other drugs, Avastin (chemical name: bevacizumab) will no longer be available as a first-line treatment for new NHS patients with advanced bowel cancer because it is judged too costly for the benefits it brings.



Any advice would be great.
My Husband, Age 42 (Father to two children both < 10 years old)
DX: (RC)
Tumor Location: Lower rectum, and 7cm from anal verge.
Tumor type: Adenocarcinoma;
Tumor size (5 cm)
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage IVB
Positive lymph nodes: Several Pararectal
Mets: Innumerable Spots on Liver & 2 small spots on Lung
Baseline CEA 1833/6308/5558/latest 1620
KRAS Mutation
Chemotherapy (if any): 5FU & Avastin (11 treatments in as of 10/10/16)

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: AVASTIN on NHS - Maintenance

Postby stu » Wed Aug 03, 2016 7:51 am

Hi,

If you contact beatingbowelcancer UK they will be able to advise you what the current criteria is and inform you how it is being accessed in the NHS. They have a help line manned by nurses. Or MacMillan may have current information as it is used in other treatment protocols also experiencing the same problem. They do use some other options as maintenance and you may want to explore them.
All the very best.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Hanksy
Posts: 15
Joined: Thu Jul 07, 2016 2:19 pm
Facebook Username: katie.hanks

Re: AVASTIN on NHS - Maintenance

Postby Hanksy » Wed Aug 03, 2016 9:12 am

Thanks very much I will look into :-)
My Husband, Age 42 (Father to two children both < 10 years old)
DX: (RC)
Tumor Location: Lower rectum, and 7cm from anal verge.
Tumor type: Adenocarcinoma;
Tumor size (5 cm)
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage IVB
Positive lymph nodes: Several Pararectal
Mets: Innumerable Spots on Liver & 2 small spots on Lung
Baseline CEA 1833/6308/5558/latest 1620
KRAS Mutation
Chemotherapy (if any): 5FU & Avastin (11 treatments in as of 10/10/16)

Alessandria
Posts: 37
Joined: Wed Apr 06, 2016 3:18 am

Re: AVASTIN on NHS - Maintenance

Postby Alessandria » Wed Aug 03, 2016 11:41 am

Hi there, I don't know what the options are for maintenance chemo, but just to say that I am on Avastin in the UK as part of my chemo package and although I am receiving treatment through private healthcare I still have to pay for the Avastin as it's not approved for bowel cancer by NICE.

Good luck!

Hanksy
Posts: 15
Joined: Thu Jul 07, 2016 2:19 pm
Facebook Username: katie.hanks

Re: AVASTIN on NHS - Maintenance

Postby Hanksy » Thu Aug 04, 2016 1:40 pm

What's the cost's looking likely to be to fund Avastin?
My Husband, Age 42 (Father to two children both < 10 years old)
DX: (RC)
Tumor Location: Lower rectum, and 7cm from anal verge.
Tumor type: Adenocarcinoma;
Tumor size (5 cm)
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage IVB
Positive lymph nodes: Several Pararectal
Mets: Innumerable Spots on Liver & 2 small spots on Lung
Baseline CEA 1833/6308/5558/latest 1620
KRAS Mutation
Chemotherapy (if any): 5FU & Avastin (11 treatments in as of 10/10/16)

Alessandria
Posts: 37
Joined: Wed Apr 06, 2016 3:18 am

Re: AVASTIN on NHS - Maintenance

Postby Alessandria » Thu Aug 04, 2016 4:28 pm

Around £1000 each treatment

User avatar
LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: AVASTIN on NHS - Maintenance

Postby LeonW » Thu Aug 04, 2016 5:27 pm

Wow . . :(
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

thehunter
Posts: 65
Joined: Thu May 19, 2016 10:13 am

Re: AVASTIN on NHS - Maintenance

Postby thehunter » Sun Aug 07, 2016 3:03 am

Hi there
Avastin is available if you live in Scotland on the NHS. I called Macmillan nurses about my brother and was told that we should move to Scotland where the Scottish Parliament has approved it. The NHS in England decided not to approve avastin. This is a crazy decision based on money.
Mar 15 stage 3 colon cancer
Apr 15 Colon resection
Cancer found LN & in fat in back
Jun 15 - 6 months chemo oxi & 5fu
Dec 15 scan : colon clear but mark on liver
Feb 16 mark on liver is a tumour
Feb 29/16 - liver resection
1 Tumour liver & attached to diapgrham & LN
May 16 - pet scan - peritoneal seeding, pelvic mass & marks in lungs & Lymph node by collarbone.
May 16 - TX: IRINOTICAN & 5 FU
Aug 16 chemo stopped. Not working.
lynch syndrome negative
KRAS Mutation present

thehunter
Posts: 65
Joined: Thu May 19, 2016 10:13 am

Re: AVASTIN on NHS - Maintenance

Postby thehunter » Sun Aug 07, 2016 3:11 am

Googling it I think there may be restrictions on who gets it even in Scotland. Better check that it out but it's certainly worth looking into. Do you have private health care that will work in the uk? Aviva in the uk include it in their cancer package.
Mar 15 stage 3 colon cancer
Apr 15 Colon resection
Cancer found LN & in fat in back
Jun 15 - 6 months chemo oxi & 5fu
Dec 15 scan : colon clear but mark on liver
Feb 16 mark on liver is a tumour
Feb 29/16 - liver resection
1 Tumour liver & attached to diapgrham & LN
May 16 - pet scan - peritoneal seeding, pelvic mass & marks in lungs & Lymph node by collarbone.
May 16 - TX: IRINOTICAN & 5 FU
Aug 16 chemo stopped. Not working.
lynch syndrome negative
KRAS Mutation present

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: AVASTIN on NHS - Maintenance

Postby Tim UK » Sun Aug 07, 2016 4:05 am

Do you have a UK lead oncologist yet? I understand that to some extent an onc is able to make a patient-specific case for the use of Avastin. As such one needs a doc who is both confident and established enough to make that call based on the case. For example BRAF-mutant KRAS-wild disease like mine was shown in a big Italian study to respond well to FOLFOXIRI plus bevacizumab as a first line:

(http://www.nejm.org/doi/full/10.1056/NEJMoa1403108)

Good luck.
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

Hanksy
Posts: 15
Joined: Thu Jul 07, 2016 2:19 pm
Facebook Username: katie.hanks

Re: AVASTIN on NHS - Maintenance

Postby Hanksy » Sun Aug 07, 2016 9:25 pm

Hi all

After my initial panicking I'm advised by my USA Onc that he will be done with Avastin after 12th round and that he could consider Folfori & Irinotecan for maintenance and I believe that is available in UK....
My Husband, Age 42 (Father to two children both < 10 years old)
DX: (RC)
Tumor Location: Lower rectum, and 7cm from anal verge.
Tumor type: Adenocarcinoma;
Tumor size (5 cm)
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage IVB
Positive lymph nodes: Several Pararectal
Mets: Innumerable Spots on Liver & 2 small spots on Lung
Baseline CEA 1833/6308/5558/latest 1620
KRAS Mutation
Chemotherapy (if any): 5FU & Avastin (11 treatments in as of 10/10/16)

User avatar
wwroam
Posts: 763
Joined: Sun Apr 06, 2008 8:13 pm
Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
Contact:

Re: AVASTIN on NHS - Maintenance

Postby wwroam » Sun Aug 07, 2016 10:09 pm

I'm rather sceptical of the benefits of Avastin, so if it were discontinued I wouldn't be too down.
Also I wouldn't be too quick to discontinue Oxaliplatin. Talking to our Oncologist it is good for 20-24 cycles ( my partner did 22 before it ceased to be effective).
It was only then that she switched over to Folfiri ( Irinotecan + Fluorouracil) + Erbitux. Once you have switched you can't go back.
She has now done 6 cycles of Folfiri and is still going strong.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

stu
Posts: 1614
Joined: Sat Aug 17, 2013 5:46 pm

Re: AVASTIN on NHS - Maintenance

Postby stu » Mon Aug 08, 2016 1:51 am

Hi,
Yes, all the mainstream are available. I think Tim gave some really good advise on assessing which oncologist is best suited to your husbands needs. A proactive oncologist is essential plus it helps navigate the NHS, which I am grateful for but its a big system and it makes it so much easier when you have a good oncologist paving the way.
All the very best with the move.
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 46 guests