Access to drugs....

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Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Access to drugs....

Postby Cb75 » Mon Oct 19, 2015 12:18 pm

I had some testing done of a met that was just removed from my ovary. The testing revealed that I am resistant to some drugs like 5fu and oxi. However, I am sensitive to irinotecan (which I have been receiving as part of folfiri) for over a year. Is there anyone here who is only getting the irinotecan part of folfiri? If I go back to chemo I don't see the point of the 5fu of I'm resistant. The report also noted that I am responsive to some other chemo drugs that are not typically used for crc. For example I am sensitive to vinorelbine, gefitinib, tamoxifen, and salinomycn. Is there anyone here who was able to obtain other chemo drugs that are not "standard of care"?

Also, if anyone has any experience with dealing with Health Canada under the SAP procedure (compassionate access), I'd like to hear about your experience...

Thanks,

cb <3
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Access to drugs....

Postby lpas » Mon Oct 19, 2015 1:24 pm

Interesting question--I'm curious to hear the answer as well.

My naturopath said he often recommends a test on circulating tumor cells that looks at the different substances (both chemotherapy and natural compounds) your tumor is sensitive to. It's performed by a company in Greece called RGCC. The concept is interesting to me and it seems like info that would be great to have, with the one (huge) caveat that insurance typically won't cover therapies outside the standard of care. I'd be very interested in hearing if anyone has had luck using this kind of information to obtain coverage or compassionate use. It seems horribly unfair that a patient would be denied access to a drug with demonstrated efficacy for their specific tumor on the sole basis that it isn't typically used for colon cancer.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Access to drugs....

Postby Steph20021 » Mon Oct 19, 2015 2:31 pm

I dont have any experience here but Id love to know how/where/how much it was for your testing. Was it at pmh? Id be interested in doing this too. I hope you are feeling well and having some great days.
<3
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Access to drugs....

Postby CRguy » Mon Oct 19, 2015 3:25 pm

Hey Cb
just have a couple of links which you probably have, about the SAP process and BCCA
Special Access Program
BCCA program

From my third hand experience the first step is having a good proactive Onc who is tied into the Cancer Centre / Health Programs where you are ( e.g. PMH ? ) and good at writing requests and navigating the hierarchy.
I also know that sometimes NDs can access and use meds that MDs can't get to easily BUTT not sure that applies to specific chemo drugs per se.

With your met coming from the ovary it is possible there is a "chimeric" effect with cell lines from germ cells making it susceptible to something like tamoxifen which you should be able to get access to.

My understanding is that the SAP is more for getting drugs not available or approved in Canada, as opposed to "off-label" uses for existing approved drugs being used in a nontypical setting ? That appears to be the basis of the POG program out here so I am hoping you will have no interference getting what you need.

Sending MEGA best wishes to you
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Access to drugs....

Postby Steph20021 » Sat Nov 07, 2015 8:53 am

Bumping this thread up, hoping it catches carmen's attention. Curious where (in Ontario?) she had her testing done and what (if anything) she paid...
Steph
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: Access to drugs....

Postby JENNJ » Sat Nov 07, 2015 11:20 am

My family has first hand experience with this situation. Memorial Sloan does the circulating tumor test here in the US. My Dad was prescribed meds FDA approved for melanoma and they were denied coverage by his insurance. The doctor at Sloan helped us with the appeals process and so far we have had 100% success with two appeals each for a different drug. We are submitting an appeal for the Xalkori that my Dad has started, after having paid $14k for one months supply, and are hopeful that with the research submitted and the CTC test results we will have this reversed as well. You really need a knowledgeable oncologist to help with this process. Our local oncologist in Buffalo was no use but thankfully we had our doctor in Sloan to help.
Hope this helps.
Katy

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Access to drugs....

Postby rp1954 » Sat Nov 07, 2015 11:49 am

My point of view is that they need to be testing live cancer cells against the generic drugs that are on the Redue list. Generic drugs that are cheap and accessible.
We've extended 5FU action partly by raising MCV with additive molecular and immune tx candidates, with MCV as a chemo activity, as well as the known cancer markers. Blood tests every 10-14 days if I'm in a hurry.
Last edited by rp1954 on Sat Nov 07, 2015 11:55 am, edited 1 time in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Access to drugs....

Postby JDinNC » Sat Nov 07, 2015 11:55 am

lpas wrote:Interesting question--I'm curious to hear the answer as well.

My naturopath said he often recommends a test on circulating tumor cells that looks at the different substances (both chemotherapy and natural compounds) your tumor is sensitive to. It's performed by a company in Greece called RGCC. The concept is interesting to me and it seems like info that would be great to have, with the one (huge) caveat that insurance typically won't cover therapies outside the standard of care. I'd be very interested in hearing if anyone has had luck using this kind of information to obtain coverage or compassionate use. It seems horribly unfair that a patient would be denied access to a drug with demonstrated efficacy for their specific tumor on the sole basis that it isn't typically used for colon cancer.


I think the trick would be to find a compassionate doctor who thinks outside the box and is willing to use unconventional treatments to see what affect it would have on his patient. Unfortunately, finding that one doctor would be impossible because he is controlled by the medical institution. I couldn't even get my doctor to do a CA-19 but cause it wasn't standard uses for colon cancer.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Access to drugs....

Postby JDinNC » Sat Nov 07, 2015 12:08 pm

Jennj

You mentioned that your father is being treated with a melanoma drug. Can you tell me the reason for this. I was diagnosed with melanoma in June. My onc for the melanoma suggested that my colon onc put me on a drug for the melanoma but he refused. I would love the name of that drug and treatment so I can again suggest the uses to my oncologist. Thanks..
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

JENNJ
Posts: 115
Joined: Tue Feb 17, 2015 8:00 pm

Re: Access to drugs....

Postby JENNJ » Sat Nov 07, 2015 12:58 pm

JDinNC wrote:Jennj

You mentioned that your father is being treated with a melanoma drug. Can you tell me the reason for this. I was diagnosed with melanoma in June. My onc for the melanoma suggested that my colon onc put me on a drug for the melanoma but he refused. I would love the name of that drug and treatment so I can again suggest the uses to my oncologist. Thanks..


Hi JD,
My Dad is BRAF mutant so he was prescribed the vectibix/Zelboraf combination. Zelboraf is a melanoma drug. His onc at MSKCC added mekinist which was also off label as its FDA approved for melanoma as well. He has progressed so we did a circulating tumor cell test that showed a newly acquired MET amplification so we have dropped the mekinist and vectibix and are solely doing Zelboraf and Xalkori starting today.
Have you been tested for the BRAF mutation?
Katy

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

Re: Access to drugs....

Postby H is for Hawk » Sat Nov 07, 2015 1:09 pm

I had the RGCC blood test done when I consulted with Dr. James Forsythe in Reno, Nevada, a well known integrative oncologist. I received a list of chemotherapy agents that would and would not help me. It costs $2500 and is not covered by insurance. Ultimately, I decided to go with chemotherapy regimen recommended by Memorial Sloan Kettering because there was data backing up their plan.

Larry Weisenthal of the Weisenthal Cancer Group, a company that tests live tumor samples for the best chemo drugs has negative things to say about RGCC, that the technology can't work-

There is a laboratory in Greece - and perhaps others elsewhere, that we are not aware of - which claims the ability to test blood samples in order to identify effective treatments for patients with solid tumor types. There are compelling scientific reasons why Dr. Weisenthal and other experts have very serious concerns about this approach. The method consists of removing normal cells from blood samples. This supposedly leaves only tumor cells. The remaining cells are then cultured and passed through a flow cytometer. A flow cytometer is a machine that detects a fluorescing marker which was added to a cell sample during processing. In this case, the marker used is called “annexin.” Annexin binds to the membranes of cells which have been killed through a process called apoptosis.
Here is why that approach cannot possibly work as the laboratory claims. First, real tumor cells always clump together when they are cultured (“culturing,” as it is used here, means inducing tumor cells to multiply outside the body). Cells which have clumped-together CANNOT be interrogated with a flow cytometer, which works by passing cells through a laser light beam, one cell at a time. Secondly, the lab in question prepares the sample using what is called “negative selection.” It attempts to remove normal cells from the sample and leave behind what are hoped to be only tumor cells. Experts in the field of cell selection state that this is impossible. No negative selection methods, known to exist today, can produce a pure tumor population - or even come close to doing so. Persons knowledgable in this area agree that this method always leaves behind hundreds or thousands of normal cells for every one tumor cell obtained. Hence, any readings obtained with this method would be based mainly upon normal cells and not upon tumor cells. Data obtained with this method would be irrelevant at best. More importantly, it is easy to see how inaccurate data such as these could drive treatment decisions which are harmful to the patient. Dr. Weisenthal has never warned against using the services of any specific lab. In this case, he strongly advises awaiting the emergence of data from independent investigators, showing that this method is capable of accurately assessing anti-tumor drug activity.
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

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Access to drugs....

Postby Cb75 » Sat Nov 07, 2015 2:57 pm

Steph20021 wrote:I dont have any experience here but Id love to know how/where/how much it was for your testing. Was it at pmh? Id be interested in doing this too. I hope you are feeling well and having some great days.
<3


Hi steph. First I want to apologize for not answering you PM. I've been overwhelmed and can hardly talk about what has happened to me. After reviewing a few labs I decided to go with Wysenthal Cancer Group. They are in California and work from a NCI approved lab. The testing grew my fresh cells to determine response to various drugs. The overall cost was approx 7000 uSD. Luckily my oncologist agreed to put me on the chemo recommended even though they are not typically used for crc. However, I need tokay the cost out of pocket. It's about 1500 for a month of drugs and treatment.

Something interesting that I found out which may benefit Canadians, is it seems that if you want access to something, you can get a recommendation from a U.S. Oncologist and then you can get access. For example with tas 102, approved by the FDA, but not approved by health canada (and I've been told it likely won't be approved any time soon), you can get a prescription from an oncologist in the U.S. Then your local oncologist can likely get it for you. It's such political bs but good to know.
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Access to drugs....

Postby JDinNC » Sat Nov 07, 2015 3:16 pm

Jennj,

Thanks for getting back to me...I was tested negative for KRAS and BRAF...that's all I know regarding my colon cancer. As for my melanoma ...I had genetic testing and all the report said was I had a 50/50 chance of recurrance. I swear....do they think we're that stupid?

Hope your dad continues to do well with his treatment

Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Access to drugs....

Postby Steph20021 » Sat Nov 07, 2015 5:36 pm

Cb75 wrote:
Steph20021 wrote:I dont have any experience here but Id love to know how/where/how much it was for your testing. Was it at pmh? Id be interested in doing this too. I hope you are feeling well and having some great days.
<3


Hi steph. First I want to apologize for not answering you PM. I've been overwhelmed and can hardly talk about what has happened to me. After reviewing a few labs I decided to go with Wysenthal Cancer Group. They are in California and work from a NCI approved lab. The testing grew my fresh cells to determine response to various drugs. The overall cost was approx 7000 uSD. Luckily my oncologist agreed to put me on the chemo recommended even though they are not typically used for crc. However, I need tokay the cost out of pocket. It's about 1500 for a month of drugs and treatment.

Something interesting that I found out which may benefit Canadians, is it seems that if you want access to something, you can get a recommendation from a U.S. Oncologist and then you can get access. For example with tas 102, approved by the FDA, but not approved by health canada (and I've been told it likely won't be approved any time soon), you can get a prescription from an oncologist in the U.S. Then your local oncologist can likely get it for you. It's such political bs but good to know.


No need to apologize. Sorry it's been tough :(. Thanks for this info, good to know this stuff. I'm not in a financial position but it's good to stay on top of this I feel. I'm avail to chat/listen if ever you need to. Pm,phone,email, whatever :) take good care.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab


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