Pharmaceutical Patient Assistance Programs

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Sun Feb 21, 2016 5:26 pm

Hawk
If you still have cracked fingers and feet ... I now use Epaderm morning and night. At night i wear cotton eczema gloves (Granberg) over the ointment. Things are a much improved as a result. Best wishes
Tim
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

Lryan
Posts: 5
Joined: Tue Mar 15, 2016 5:37 pm

Re: Pharmaceutical Patient Assistance Programs

Postby Lryan » Wed Mar 16, 2016 4:45 pm

Hi All

My first post as v interested in BRAF mutation therapies and how you guys have managed to access them. my step son Tim is in Australia and we have been putting together a case for him to receive the combination therapy that Tim UK is undergoing. At the moment it looks like the drugs are only oked for melanoma. Are you accessing via clinical trials or via some other means?

Thanks
Step Son Tim, aged 37. Diagnosed CRC in 2014 stage 4. Half colon, lymph nodes, appendix et al removed and liver resected. Adjunctive chemo folfox. Dec 2015 scan showed liver mets and peri aorta mets. Kraf wt, BRAF mutation. Folfiri + avastin, interrupted by anal fistula, cancer markers rising so considered refractory. Started on irinotecan and cetuximab in Feb 2016.

Nik Colon

Re: Pharmaceutical Patient Assistance Programs

Postby Nik Colon » Wed Mar 16, 2016 9:48 pm

Lryan wrote:Hi All

My first post as v interested in BRAF mutation therapies and how you guys have managed to access them. my step son Tim is in Australia and we have been putting together a case for him to receive the combination therapy that Tim UK is undergoing. At the moment it looks like the drugs are only oked for melanoma. Are you accessing via clinical trials or via some other means?

Thanks

Check this link
http://fightcolorectalcancer.org/get-re ... al-trials/

And this sticky thread
viewtopic.php?f=1&t=53238

User avatar
H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Re: Pharmaceutical Patient Assistance Programs

Postby H is for Hawk » Wed Mar 16, 2016 10:06 pm

The Vectibix infusion of the new triplet BRAF chemotherapy is FDA approved for colon cancer, the Tafinlar capsules & Mekinist pills are not. I went through 5 appeals with my insurance company and was denied at every step. I did obtain the Tafinlar and Mekinist through the manufacturer's patient assistance program. I looked at my application and noticed one of the requirements is US residency. Perhaps you ask the Australian oncologist to see if there is a Australia-based pharmaceutical patient assistance program; if there is one, the oncologist will likely know. The telephone number for the US-only program is 1 800 942 3424.

There is a clinical trial to obtain the Tafinlar and Mekinist. Unfortunately, the closest investigational site to Australia is in Japan. The other sites are in the USA and Europe. The trial number is NCT01750918.

Ask the oncologist whether he has some free sample bottles of Tafinlar and Mekinist from the pharmaceutical salesman.

The last option is to self pay, the US retail cost is about $38,000 per month for both Tafinlar & Mekinist; in Australia there may be price controls and it may be less expensive.
H is for Hawk (57)
10/14 L. hemi-colectomy 3 x 4 x 1 cm tumor, 13/14 lymph nodes pos. pT4a N2B M0 stage 3 MSS
11/14 - 4/15 12x FOLFOX
5/15 PET scan: 2.5 x 1.5 cm l. colon lesion, peri surface lesion SUV 2.4, adenocar., KRAS wd, BRAF V600E mut
6/15 HIPEC
9/15 Pleural lining & liver mets, CA 19-9: 6000
10/15 Vectibix Tafinlar Mekinist
11/15 1500
1/16 200
2/16 100, add Lentinan
3/16 122
6/16 4500
7/16 20,000, CT scan - three new liver mets
8/16 6700, FOLFIRI
9/16 4900, CT scan - two new liver mets
10/16 2255 vinorelbine

Lryan
Posts: 5
Joined: Tue Mar 15, 2016 5:37 pm

Re: Pharmaceutical Patient Assistance Programs

Postby Lryan » Thu Mar 17, 2016 4:03 pm

Thanks Nik and Hawk for your replies - will check out the links and may come back with further questions.
Lynne
Step Son Tim, aged 37. Diagnosed CRC in 2014 stage 4. Half colon, lymph nodes, appendix et al removed and liver resected. Adjunctive chemo folfox. Dec 2015 scan showed liver mets and peri aorta mets. Kraf wt, BRAF mutation. Folfiri + avastin, interrupted by anal fistula, cancer markers rising so considered refractory. Started on irinotecan and cetuximab in Feb 2016.

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Fri Mar 18, 2016 5:07 pm

Lynne,

Sorry for the slow response. I am not on trial ... I contacted a couple of trial centres here in Europe (Birmingham UK, Barcelona Spain), but it was complicated and eligibility criteria were tough, in particular the requirement for measurable disease. My mets were mucinous (as opposed to solid) meaning they are hard to measure and track by MRI and CT. My oncologist saved the day by convincing my health insurance provider to fund all 3 components. It took several rounds of correspondence, but he repeatedly referred to the ORRs of 30-40% observed in recent trials (Chloe Atreya at the University of San Fran published the most recent and comprehensive paper) and stated that he strongly recommened it in my case. To their credit, the company conceded and agreed to fund. I spent a lot of time researching the various triplet combindations (the other one is BRAF/EGFR/PI3K) and between us we built a case to present to the insurance co.

The side-effects are a bit nasty, with all the skin breakdown etc., but like Hawk I have had positive early results (CEA down to 1 or 2 and CA19-9 down to 55, with massive shrinkage on the PET/CT scans). So I think it's worth insisting and pushing. Best of luck,

Tim
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

Lryan
Posts: 5
Joined: Tue Mar 15, 2016 5:37 pm

Re: Pharmaceutical Patient Assistance Programs

Postby Lryan » Fri Mar 18, 2016 5:19 pm

Hi Tim

Many thanks for your response and info. We will digest this and may come back to you. We are very much in the hands of Tim's medical team at the moment but the distance between us is causing us to feel quite vulnerable with the thought that they are running out of options. As such my husband, step daughter and I have been doing some in depth research and are currently putting options together to discuss with the medical team for discussion. That paper will be very helpful.

Thanks again, kind regards

Lynne
Step Son Tim, aged 37. Diagnosed CRC in 2014 stage 4. Half colon, lymph nodes, appendix et al removed and liver resected. Adjunctive chemo folfox. Dec 2015 scan showed liver mets and peri aorta mets. Kraf wt, BRAF mutation. Folfiri + avastin, interrupted by anal fistula, cancer markers rising so considered refractory. Started on irinotecan and cetuximab in Feb 2016.

paulpopo
Posts: 7
Joined: Wed Mar 09, 2016 8:35 am
Facebook Username: Paul Popovich

Re: Pharmaceutical Patient Assistance Programs

Postby paulpopo » Sun Mar 20, 2016 4:28 am

When my husband was prescribed Xeloda, our co-pay was about $1500 a month. The cancer center that prescribed them told me to call if we had a huge co-pay. I called them and was told that they would 'work on it'. I got tired of waiting, so I dug around online and found http://www.abbviepaf.org/. I applied on their website and within minutes I was able to call the pharmacy with our approval information. The co-pay was paid through them and it was delivered the next day. The cancer center finally did call a week later to tell me that they were still 'working on it'. I know they have lots of other patients, but the only one I'm worried about is my husband. One thing I've learned from my husband's cancer is that you have to be an caregiver AND an advocate for your loved one. This patient assistance program has been a Godsend for us. They also helped us a few years ago with the cost of the Humira that my husband was prescribed for Crohn's.
husband dx 9/1/15 sigmoid colon tumor
Spent 9/1 - 10/26 preparing for surgery at Geisinger
10/26 - found out surgeon was 'out-of-network'
Started over 11/6 at UPMC - Pittsburgh
dx with rectal cancer 11/8
neoadjuvant chemoradiation 11/30 - 1/ 14
MRI 3/1 shows peritoneal lining infiltration
Sugery scheduled for 3/28
Stress test needed-surgery rescheduled for 4/11
Abnormal stress test/scheduled for MRI 4/11

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Sun Mar 20, 2016 4:04 pm

Lynne

I was thinking, the other paper worth citing is that produced by the Vall d'Hebron clinic in Barcelona. Very similar BRAF-inhibition triplet trial, but with a PI3K inhibitor instead of the MEK inhibitor. Also had good ORRs (30-40% I recall), and the pdf of their results is on the web, although I can't seem to find it now.

Tim
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

Lryan
Posts: 5
Joined: Tue Mar 15, 2016 5:37 pm

Re: Pharmaceutical Patient Assistance Programs

Postby Lryan » Sun Mar 20, 2016 5:11 pm

Hi Tim

Thanks again for your response. Tim is having a meeting with his oncologist on Wednesday who will hopefully support him to access a triple inhibitor regime. We have a family connection in a university research lab who is accessing papers however your information is once again very helpful. Hope you continue to get positive results.

Kind regards

Lynne
Step Son Tim, aged 37. Diagnosed CRC in 2014 stage 4. Half colon, lymph nodes, appendix et al removed and liver resected. Adjunctive chemo folfox. Dec 2015 scan showed liver mets and peri aorta mets. Kraf wt, BRAF mutation. Folfiri + avastin, interrupted by anal fistula, cancer markers rising so considered refractory. Started on irinotecan and cetuximab in Feb 2016.

Lryan
Posts: 5
Joined: Tue Mar 15, 2016 5:37 pm

Re: Pharmaceutical Patient Assistance Programs

Postby Lryan » Mon Mar 28, 2016 1:56 am

Hi Tim

Hope you are continuing to see an improvement with your treatment. We have made some progress with our Tim's medical team. We composed an email for Tim to send to his team suggesting a couple of avenues that may be helpful given his genetic report findings. Surprisingly they have acted on some of those i.e. SIRTs procedure will take place on 4 April, Cyberknife meeting to take place in April and Regorafenib drug to be administered. However we want to get them to consider the triple combination as we believe that this is his best chance from the research we have done. We want to steer them in the right direction as such were wondering if you can share any details in how your oncologist progressed this. You can PM me if that's better.

Not sure if you have seen this paper but thought it might be useful http://gotoper-com.s3.amazonaws.com/_me ... Cancer.pdf

Many thanks

Lynne
Step Son Tim, aged 37. Diagnosed CRC in 2014 stage 4. Half colon, lymph nodes, appendix et al removed and liver resected. Adjunctive chemo folfox. Dec 2015 scan showed liver mets and peri aorta mets. Kraf wt, BRAF mutation. Folfiri + avastin, interrupted by anal fistula, cancer markers rising so considered refractory. Started on irinotecan and cetuximab in Feb 2016.

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Tue Mar 29, 2016 2:35 pm

Lynne

The background is that my oncologist viewed this as a 2nd (or even 3rd) line treatment, the first having failed. In my case that was FOLFOXIRI plus avastin, and arguably my subsequent HIPEC op. To be specific, it had succeeded in shrinking my liver mets ready for resection, but didn't seem to have reached the peritoneum and serosal lining. This is relevant because I don't believe he could have advocated the braf triplet as first line.

Like you, I then presented him with a list of what I perceived as my options (revert to chemo / pd-1 blockade / this triplet) together with a brief summary of the response stats for each. He was quite familiar with the clinicians and the science behind each new option. I then asked him "what would you do, if you were the patient?". He was honest and said there were no clear answers, but his instinct was the triplet given my BRAF status, adding that if it failed then we could always go back and re-test with the chemo. I should be clear that I took second opinions with another leading UK onc who is closely involved in these trials and his view was totally different: he said that the toxicity of the triplet was quite brutal and it's efficacy not clear ... so I should go back to the chemo, trying the triplet only if the chemo failed.

Having decided how to proceed, the onc agreed to write to our insurer. He stated they would most likely reject it, on the basis that it is nowhere near NICE or FDA approval. We were prepared to re-mortgage and self-fund if necessary. They rejected it once, he wrote back with a rebuttal and a resume of the research. They agreed to fund the first rounds, and continue if there was evidence of early success.

Good luck!

Tim
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

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

Re: Pharmaceutical Patient Assistance Programs

Postby Alessandria » Sun Apr 10, 2016 10:01 am

Hi Tim

How are you getting on with the braf triplet therapy at the moment?

Best wishes
Alessandria

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Tue Apr 26, 2016 5:26 pm

Alessandria,

Sorry for my slow response. The therapy is going pretty well so far. Markers are well down, and scans show great shrinkage in my peritoneal mets and disappearance of the liver mets. Side effects are tolerable (skin cracks, spots, paronychia, diarrhoea, anaemia) and all manageable.

Best wishes,
Tim
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

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

Re: Pharmaceutical Patient Assistance Programs

Postby Alessandria » Mon May 09, 2016 5:50 pm

Oh that's brilliant news! As you can imagine, with mine being braf (and left sided & mucinous) too I have a great interest in hearing about how these new treatments are working for you. I *really* hope it continues to work well for you. I will have a scan in June to see how well the folfoxiri & avastin is working for me.

All the best
Alessandria


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