Pharmaceutical Patient Assistance Programs

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
H is for Hawk
Posts: 103
Joined: Wed May 20, 2015 4:51 pm
Location: eastern Pennsylvania

Pharmaceutical Patient Assistance Programs

Postby H is for Hawk » Fri Sep 25, 2015 7:00 pm

I have new metastasis on my my liver and pleural lining only three months after my traumatic HIPEC surgery. The folks at Memorial Sloan Kettering are recommending systemic chemotherapy of Vectibix (anti EGFR), Tafinlar (dabrafenib - a BRAF inhibitor) , and Mekinist (trametinib - a MEK inhibitor).

I am having trouble obtaining the Tafinlar capsules and Mekinist pills, as they are FDA approved only for melanoma cancer, not colon cancer. I suggested to my local oncologist whether I should fill out the "prior authorization" forms with my insurance company. He said it is wasted time, as his experience (and his other colleagues) that insurance companies never approve "off label" use of expensive cancer drugs.

My next step is to apply for financial assistance directly from the pharmaceutical company. Has anyone had success with these patient assistance programs? On the application form, you have to list all of your income sources and assets. Do they expect you to spend down all of your assets (like a 401K) before they help? Do you have to be living near the government defined poverty level? Would they even consider assisting a middle class family?

My last option would be to purchase the drugs retail, perhaps from a Canadian mail order for about $15,000/month; my local CVS store quoted me a price of $29,000 per month. Has anyone had a positive experience buying cancer drugs outside the USA? If so, could you suggest a company.

Thanks,
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

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

Re: Pharmaceutical Patient Assistance Programs

Postby CRguy » Fri Sep 25, 2015 7:20 pm

Sorry for your FUBAR with the US system :twisted:
probably not much different up here :twisted: ... for what you are asking

IF it could be an "insurance" issue you may wish to try
http://www.theinsurancewarrior.com/home.html

Up here we do have a "compassionate access" for meds NOT currently approved .. BUTT in the chain to get here

AND we also have special release/access for Oncs who have their shit together and know where and HOW to get things out of the current "blessed" supply chain...

To "play the game in either country" ... you need an Onc who will go above and beyond to get you what YOU need or put you in contact with someone who will.

JMO.

Best wishes
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

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Pharmaceutical Patient Assistance Programs

Postby Lee » Sat Sep 26, 2015 3:04 pm

I'm sorry this is happening to you. Sorry to say, it's getting harder to get the insurance to cover things anymore, thanks to Obamacare. 11 years ago, when I was starting chemo, FOLFOX was only available to stage IV folks (ie FDA approve for only). My Onc got me on board and got the insurance to cover it. I don't think they would cover me today under the same situation :evil: .

Since MSK is suggestion this treatment plan, can they help you get it. Or possibly go through the insurance company, and when they deny it, appeal it. Also consider getting a medical attorney on board.

Good luck, this should not be happening. If the MD's recommend it, the insurance company SHOULD COVER IT :evil:

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Redtexa5
Posts: 181
Joined: Thu Aug 02, 2012 11:41 pm
Location: Austin, Texas

Re: Pharmaceutical Patient Assistance Programs

Postby Redtexa5 » Sat Sep 26, 2015 4:31 pm

I have had great luck with Patient Assistance Programs or PAPS Most only look at your annual income and it is pretty generous Also, see if you can track down the drug rep for the medication in question as they can be a huge help
Start of symptoms 9/08
Dx Stage IIIc/IV CC 2/09
T4bNxM0
Colostomy 2/09
Radiation/5FU 3/09-5/09
FOLFOX 6 6/09-8/09
9/09 Tumor removed Colostomy reversed
10/09-1/10 FOLFOX 6
3/10-2/15 NED
2/14 Colonoscopy NED
2/15 Colonoscopy NED
6/15 PET/CT NED
2/17 7 years NED

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Tue Jan 12, 2016 6:28 pm

Hi Hawk
Not strictly a reply to this post, but I'm on the same triplet BRAF-inhibition therapy as you (dabrafenib, tramatenib, panitumumab) here in the UK. I started last week. I also had a brutal HIPEC just 2 months ago and have peritoneal progression. Maybe we could compare notes on side effects etc as the treatment unfolds? Meanwhile best wishes to you.
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

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Pharmaceutical Patient Assistance Programs

Postby juliej » Tue Jan 12, 2016 10:23 pm

I have only used Genentech for Xeloda, but the process was very simple. They didn't care about income. They paid 80% of whatever your insurance wouldn't pay.

Another possibility is having MSKCC go to bat for you. I know they took on my insurance company (Aetna) and got things covered that weren't allowed by their Stage IV "standard of care" rules. It helps if your oncologist or your MSK team has published articles that show Tafinlar and Mekinist to be effective in combination with standard chemo for CRC patients. It's hard for the insurance companies to turn down straight evidence-based research.

Did you have the gene sequencing test at MSK? If not, ask your oncologist about it.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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 Jan 13, 2016 2:21 pm

Tim,
The so-called targeted chemotherapy of Vectibix / Tafinlar / Mekinist has more side effects than I expected. About two weeks after my first infusion, I developed dozens of pustular acne-like lesions of my face and scalp. This made shaving very difficult and I became self-conscious and avoided going out in public. My oncologist prescribed once daily doxycycline, which cleared up the pustules but shortly thereafter I developed flaky, dry skin on my face, which persists to this day. I have to pull off the pieces of dead skin with a tweezers before I go out. Moisturizer applied to the skin does not seem to help. About this time I also developed cracks at my finger tips, which is painful when picking up an object. I now apply a band-aid on each finger tip along with a topical antibiotic; this has made this issue easier to tolerate. About three months in the regimen I developed dozens of pustular sores on both legs, but it really didn't bother me much since it was hidden by my clothing. My oncologists prescribed a more powerful 3x daily Keflex antibiotic, which has helped somewhat, but since these sores were healing so slowly, my oncologist withheld the Vectibix on my last cycle. He is worried that it might lead to some sort of sepsis or body wide infection. The oncologists thinks the side-effects are caused mostly by the Vectibix. I am concerned that my Vectibix may be withheld permanently, which would negatively affect my response. My back up plan is to transition to ironotecan or FOLFIRI chemotherapy or possibly a clinical trial. Have you considered any clinical trials? I am researching immunotherapy trials right now.

I also had a traumatic recovery from the HIPIC surgery, for two weeks after surgery I was very weak and frail, I could barely walk to the hospital bathroom. My appetite was suppressed for a long time, I felt full after a spoonful of food. About a month after my discharge I developed severe constipation. A GI doctor prescribed Linzess which helped alot, it cured the constipation, with a side effect of diarrhea, but this was so much easier to deal with than the constant bloated & nauseous feeling of constipation. It took me five months to get back to normal.
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

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Thu Jan 14, 2016 3:52 pm

Hawk

I'm only 10 days in but getting the same effects. Pustules and pimples on back, chest and shoulders. Red flaky skin on my nose and face. And growing a beard to minimise irritation. The moisturiser prescribed seems to work quite well (diprobase). Also the cracked finger tips.

I have also had quite bad (new) diarrhoea, managed somewhat with Loperamide. I've been told that the externally visible irritation can also manifest itself in the intestines.

My back up plan would be to revert to folfoxiri plus avastin. It worked very well on my liver mets but didn't seem to reach the peritoneum, which I understand is a function of relatively poor vascularisation in one's abdomen.

Regarding trials, I have also done a lot of research but found little in the BRAF sphere - beyond this triplet thing - that looks promising. One area is pd-1 blockade, but that is effective only in MSI/MMR-deficient tumours ... Which mine apparently is not. Like you I also thought hard about this vitamin c paper from Harvard/johns Hopkins. My oncologist dismissed it as pre-clinical, thus not really valid.

How has your team been monitoring response? Cea markers / PET imaging?

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

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

Re: Pharmaceutical Patient Assistance Programs

Postby lpas » Thu Jan 14, 2016 10:55 pm

Hawk and Tim,

I wanted to pass along some information I came across recently about another possible therapy for those with the BRAF mutation (and others too). Have either of you looked into the possibility of copper chelation with tetrathiomolybdate? It's something I've been very seriously considering for myself, but when I came across the article below (first link) suggesting it may be useful for those with BRAF, I immediately thought of you guys. Seems like it's mostly been tested in women with breast cancer who are NED (see link #3) but the preliminary results sound quite promising. I've included lots of info below if either of you are interested in researching further.

Although the drug isn't typically covered by insurance, it is available for purchase at select US pharmacies with a prescription, and I understand there are a few doctors and naturopaths who are prescribing it for their patients. From what I've read, the cost is around $300/mo to start out but goes down substantially (closer to $150 or $200) once you reach the maintenance stage. My naturopath indicates he has seen some stage IV patients (not sure of their BRAF status) maintain on the regimen at 5+ years without a recurrence. Here's the info:

http://www.nature.com/nature/journal/v509/n7501/full/nature13180.html

http://www.ncbi.nlm.nih.gov/pubmed/24210000

http://annonc.oxfordjournals.org/content/early/2013/02/04/annonc.mds654.full.pdf?keytype=ref&ijkey=zXgHCm2GcxvqAbv

http://clincancerres.aacrjournals.org/content/6/1/1.full

http://www.cancerfoundation.com/roleofcopper.html

http://www.colonchat.net/forum/viewtopic.php?f=1&t=697&sid=5c4472ebbd35e06c523579ef07079956

I hope someone finds this useful. Best of luck to you both.
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

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Sat Jan 16, 2016 6:19 pm

Thank you. This is very interesting. I shall discuss it with the oncs. 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

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 » Tue Jan 19, 2016 7:05 pm

Hi lpas,
Thanks for the information about tetrathiomolybdate (TTM) for BRAF mutation patients, and the use of acetyl-l-carnitine to heal peripheral neuropathy last month. I think most of us are aware of the advice to avoid copper containing multivitamins because copper enhances micro blood vessel formation, potentially to tumors. The article in Nature magazine is especially interesting because it links copper directly to the MAPK signalling pathway to promote cancer in BRAF patients. I am going to see if my integrative oncologist will help me get on the copper chelation protocol. There is some work involved though, getting a baseline copper level, then gradually increasing the tetrathiomolybdate dose to get to a 20% of baseline copper level in the bloodstream.

Hello Tim,
Sounds like you are experiencing the hyperkeratinization side effects of the Vectibix / Tafinlar / Mekinist chemotherapy too. New skin cells are rapidly proliferating on the skin surface and inside the pores. The pores eventually clog and prevent sebum (skin oil) from exiting, resulting in infection and inflammation.

I had a CT scan in November that showed my liver and pleural lining mets have dissapeared, but a new suspicious 3 cm calcified soft tissue mass was identified on the pelvic muscle. In December, a PET scan revealed it increased in size to 3.6 cm with a SUV of 3. It is in an odd location, on top of the pelvic muscle, under some other muscles, and it can't be core needle or surgically biopsied, nor cryo-ablated. The oncologists are stumped, it could be a metastatic, or could be inflammation. I can only watch and wait; a CT scan next month may be more definitive.

CEA biomarkers were never a reliable marker for me, there were at normal levels just before my initial surgery and during disease progression earlier this year. The CA 19-9 test was more useful. This started out at 6000 at the start of the triplet chemotherapy and came down rapidly to 500, but has risen to 2500 last month.

There are three clinical trials here in the States (New York City, Tennessee and Baltimore) that use epigenetic compounds to attempt to change MSS tumors to act more like MSI ones when checkpoint inhibitors are infused. I suspect the logistics of have to relocate to the US for a few months is not practical. PM me if you want the clinical trial details.

A heads up to you about the Tafinlar capsules and Mekinist pills. The package insert indicates there is a 10% chance of experiencing heart damage, so Novartis recommends a echocardiogram at the start of therapy and every three months there after. There also is a risk of new primary malignancies - 9% basal cell skin cancer, 2 % melanoma, and 1.8% risk of developing pancreatic, head & neck or brain cancer. You are probably aware of the dose timing requirements, ingestion 1 hour before meals and two hours after meals because the fat in foods interfere with the absorption.
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

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

Re: Pharmaceutical Patient Assistance Programs

Postby lpas » Tue Jan 19, 2016 9:46 pm

Really hope it works out for you, Hawk. Please let us know. I've been working on chelating my copper levels down with straight molybdenum (much cheaper than TTM) which has dropped my ceruloplasmin from a baseline of 41 to 24 and my serum copper from 183 to 110. This took about 5 months, so much slower than with TTM from what I understand. I also think there's a limit to how much you can drop your levels with just molybdenum. I suspect I'm getting close to that point. If you end up needing the name of a practitioner who will prescribe, please feel free to PM me. I also have the phone number for a compounding pharmacy that will fill the prescriptions and ship to you.
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

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 » Fri Feb 05, 2016 6:26 pm

Hi lpas,

Thanks for the information; I had my baseline cerulplasmin (Cp) tested this week. I am now waiting for the compounding pharmacy in Hopewell, NJ to receive a new shipment of tetrathiomolybdate, so they can make the 20 mg capsules. My integrative doctor has prescribed 40 mg at each meal, and 60 mg at bedtime. I am also getting CBC blood tests every week to confirm I am not anemic or neutropenic, as this is one of the risks with this therapy. I found a 2014 research paper by Dr. George Brewer (University of Michigan) who performed a lot of investigation of this therapy in the last decade, and he concluded this therapy works best in patients with microstatic metastisis, not with advanced bulky disease.


I would like to give a shout out to the pharmaceutical company who manufactures Tafinlar and Mekinist. Since I am using these medications off label, my insurance company will not pay. After four months, I am at the 5th level of appeal with the insurance company. I think their strategy is to delay as long as possible so you eventually expire. The compassionate pharmaceutical company has provided these medications to me from day 1. If not for the pharmaceutical company, I would have had to sell my house and cash out my 401K to pay the $40,000 monthly retail costs of these drugs. My CA 19-9 biomarker level has dropped from 6000 to 100 so I know the drugs are working.
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

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

Re: Pharmaceutical Patient Assistance Programs

Postby Tim UK » Sat Feb 06, 2016 4:55 pm

Hi Hawk

Sorry for the radio silence. I was so pleased to note that your CA19-9 dropped way back down. My marker trajectory has been pretty weird. My pre-treatment baselines were CEA 16, CA19-9 600+. These fell after just two weeks to CEA 7, CA19-9 190. Then on my last blood test 5 days ago, they diverged: CEA down to 3, CA19-9 back up to 600+. I'm hoping that this latest is a temporary elevation, and draw quite some comfort from the trajectory of your CA19-9.

Skin symptoms have diminished slightly. Face is less red and flaky (hydrocortisone has helped, I think) and back pimples have reduced (Betnovate has helped). Fingers and feet have been splitting and painful. I have found that steri-strips on the finger cracks, followed by tight binding with surgical tape, has been effective. Again, the hydrocortisone cream has helped too.

I follow your copper discussions with interest. My team were dismissive ("pre-clinical", they say). But the science sounds compelling so I plan to revisit the discussion.

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

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

Re: Pharmaceutical Patient Assistance Programs

Postby lpas » Sun Feb 07, 2016 11:02 pm

That's great news about the TTM, Hawk. I'm really excited that you're trying it. The pharmacy my doctor referred me to is a different one (in Wisconsin). Maybe they would have the 20mg capsules in stock without a wait? FYI, I saw the same info about TTM working best for those who are NED. Were you planning to remove the pelvic nodule or leave it as is for now? Keeping fingers crossed that this strategy turns out to be helpful for you.

Tim, I'm not surprised your doctor was dismissive. My conventional oncologist made some of the same comments. I think it's only NDs and integrative doctors who are prescribing this for the moment. It might be worth an appt with an integrative practitioner if you have one in the area (I consult with mine over the phone). Wishing you continued success with the BRAF-inhibition therapy.
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


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



Who is online

Users browsing this forum: Google [Bot] and 109 guests