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#183999 08-05-2014 07:42 AM
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I have a friend/employee who has been battling breast cancer at Moffitt for the last 3 years. Moffitt told her yesterday that they are out of options, there is nothing more they can do. Her Husband is obviously desperate and called me a few minutes ago with all of this and also asks if I know anything about some product called Phoenix Tears? Anyone know anything about this stuff?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #184000 08-05-2014 08:09 AM
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It's all over the internet. It is hemp oil but sounds more like a scam.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
davidcpa #184003 08-05-2014 08:19 AM
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Hmmm well hemp oil can't hurt....


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
davidcpa #184004 08-05-2014 08:20 AM
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I see but I can't find anything on say Quackwatch, etc sites. Certainly I'm extremely doubtful but as her Husband is saying, they have nothing to loose at this point assuming it's not harmful. That's why I'm posting here to see if anyone has any info on this oil.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #184062 08-06-2014 10:04 AM
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Hi David,

I did a quick google search and #1 hit shows a relationship of this to Rick Simpson. If this is in fact a credible relationship then all is good as he is a fully legit medican (medical cannabis) expert.

He is one of the folks credited with an extraction process for creating concentrates. Search on his name and oil and you get pages.

I am sorry to hear about the prescription of the palliative route for your friend. Even being the staunch supporter of medican use it is not possible to indicate this for anything curative.

For easing pain, anxiety, insomnia, improving appetite, etc. there is only potential upside for trying. There are two types of chemicals: THC and CBD. One offers the psycho effects and the other helps easing the nasty symptoms.

Good luck


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
davidcpa #184080 08-06-2014 06:43 PM
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Shona Banda and Rick Simpson have both done amazing things. Basically vaporized weed with the vapor collected, scraped, put in a capsule and ingested.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
davidcpa #184096 08-07-2014 06:19 AM
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Thanks all.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #185553 09-29-2014 04:46 PM
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I was searching the forum to see if anyone had information on Cannabis Oil then I saw this forum. David maybe your friend can get his wife some?

http://www.collective-evolution.com...ies-that-prove-cannabis-can-cure-cancer/


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
davidcpa #187225 12-16-2014 10:26 AM
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I know a man in Las Vegas who was diagnosed with stage 4 pancreatic cancer, and swears by phoenix tears. He claims it arrested his symptoms and is a big evangelist for it.

There is some science about cannabinoids working against some cancers.

The plural of anecdote is not data of course, and your mileage may vary. But if your friend is out of options, it can't hurt to try.


Head and neck cancer,
Squamous cell carcinoma,
HPV p16, Stage 3N (6/14) Occult origin;
58 year old male 35 rads & 2.5 doses Cisplatin chemo 7/10/14> 8/25/14
1.5 years clear of cancer, at this point.

"This, too is part of Life's Rich Pageant!"
davidcpa #189162 04-14-2015 05:16 AM
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David, I've noticed you haven't posted, logged on in a while. Hope everything is ok.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






davidcpa #189178 04-14-2015 08:55 AM
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David is a CPA and usually is MIA during tax season.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
davidcpa #189179 04-14-2015 09:08 AM
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Thanks. Speaking of such, I have until tomorrow frown


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






davidcpa #190106 06-26-2015 08:03 AM
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Has anyone tried Rick Simpson oil? I've tried emailing Rick, but never got a response in an effort to find a responsible resource for the product.

My Mom has been diagnosed with yet another cancer of the tongue requiring a completion glossectomy of the remnant tongue or aggressive chemo; not good options given her age and condition. There are plenty of places out there trying to sell me hemp oil, but I'm not comfortable buying it based on my research (oil with all sorts of questionable byproducts/chemicals in them). Any thoughts would be greatly appreciated. I've read compelling stories about RSO and I'd like to try to obtain it. Thanks.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
davidcpa #190110 06-26-2015 02:07 PM
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The only scientifically proven ways to kill oral cancer is thru surgery (to remove the cancerous cells) or radiation with or without chemo (to zap and poison the cancer). There are NO other ways to eliminate this awful disease. We all would love to have other less invasive options but as of now they simply do not exist. Anyone claiming to have a "secret way to cure cancer" is flat out lying and trying to make money off other people's misfortunes. Save yourself and your mother's $$$ and health by following up with CCCs or other reputable medical facilities.



PS... The OCF forum is not the place to bring up unproven alternative treatments. Adjunctive therapies are very different from alternative treatments. Adjunctive therapies are things like manuka honey which helps patients not replaces conventional treatments. We strongly encourage alternative treatment types of conversations to happen other places than the OCF public forum. Part of our list of board rules is devoted to explaining this in more detail. Questions? Please PM me.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #190116 06-26-2015 08:43 PM
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You're welcome to your opinion. I've been battling this dreadful disease with my parents since 2003. I've also conferred with Oncologists at world class teaching hospitals - they actually support cannabis use in my Mom's case. I don't leave any stone unturned, that quality is in my DNA. Research has taken place at Israeli hospitals and is currently underway at a university in California. In addition, the NIH continues to explore the possible uses of THC, CBD, and other cannabinoids for medical treatment. Moreover, there is enough anecdotal evidence that suggests it may help my Mom with her condition. Am I desperate? Absolutely. Is there a downside in comparison to your so called proven techniques? Given my Mom's situation, nope. The proven techniques that you speak of have not cured my Mom's problems; please read my profile, I'm not a newbie. In fact, the radiation that she received in '03, according to her docs at the hospital where it was administered, most likely caused her tongue cancer. I won't take any more space on the forum, but I'm somewhat offended by your response. You have not walked in my shoes, you have no idea what type of research I have done and I simply posted, requesting information, on an existing thread.

Last edited by didier; 06-26-2015 08:46 PM.

Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
davidcpa #190117 06-27-2015 10:43 AM
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DavidCPA began this discussion long ago and Phoenix Tears and RSO are virtually the same dicsussion. When all conventional options have been exhausted, these discussions are what take place. I am in heart failure, kidney failure, lung failure and brain failure. Conventional treatment abandoned me and sent me home to die back in 2009. I don't bring it up here more out of respect for Brian and OCF.

Didier, message me or email me and we can start this dialogue separately. Forcing people to die after exhausting treatment options isn't something I will ever choose, for me or for anyone. Much of what I have tried is now being used at places like MSK and MDA. I consider them leaders in this war.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
davidcpa #190126 06-28-2015 03:58 AM
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didier,

Just supporting Ed's statement on OCF policy about the point where current scientifically proven medical protocols are gone.

OCF operates within the umbrella of science. Anything outside this is labeled alternative, outside the umbrella, and simply does not exist.

The reality is all things within the umbrella were previously outside until proven. So something that did not exist now does because it was proven.

I'm certain there other ways to treat cancers now labelled "alternative" and after being vetted through science will then be true.

I think Christine does a good job of making this point but adding this additional point along with Ed's perspective would better set the context for the range of treatments.

Personally, I strongly believe there are chemicals in pot that relieve pain and aid sleeping, and promote eating. Since it has not been scientifically accepted it can not be true and not recommended.

It does work and it does alter state. Why do driving laws prohibit driving while smoking pot - because it is true, just not medically proven as yet due to stupid political agenda. This is a specific instance when science will do its vetting and proving and indeed then pot will be prescribed by medical doctors.

Until that day, OCF will not recommend or support or recognize or allow posts stating take pot for pain or eating. Whether it is adjunctive or alternative is just BS. If it works then use it.

Second point. I would NEVER EVER support someone who has not fully exhausted all medically proven curative or palliative therapies to consider pot, NEVER EVER. But once that line has been crossed, any and all possibilities are fair game to me.

Ed is living proof that some "alternative" options work. Thankfully, "not proven" in this case is TRUE - he lives!

This started as a one line - I support Ed but the post made me think more deeply about where science starts and ends and the context where that lies along the possibilities of the universe. Science finds a way to document a subset of possibilities as true.

Do whatever will help you out. You can PM me also but I rather have the discussion posted. Maybe we have the discussion as adjunctive for increasing appetite; I think that would meet OCF guidelines.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
davidcpa #190131 06-28-2015 07:18 PM
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didier has been with us on the forums for a long time. I never got the sense in past posts that there was a tendency to favor alternatives over conventional, nor to advocate for them.

I think that everyone has stated this pretty clearly. We all have to make choices, and live with where we end up taking our ideas for better or worse. There is some positive work being done on cannabis, and there is also some questionable data from many years ago. On other forums and private blogs it has been talked about in more extreme terms, as "the" cure that no institution is willing to give up radiation and chemo to switch to. Various reasons are always given but for the most part they all circle back to the medical establishment making money. Conspiracy lives everywhere. The data is no human study heavy, but petri dish and mouse model driven, and we are not mice. We have cured a few cancers in mice through mechanisms that do not transfer to the human experience.

OCF's policies are pretty straight forward, but in this case I would say we are stepping into a gray area given the research of the last 3 years in particular. Nothing I've read makes me feel like THC or any other active ingredient in cannabis is the second coming, and going to replace anything in our current armamentarium of tools. There are great things in immunotherapy that I am very excited about and have seen great data from like the PDL-1 studies that were the hit of the ASCO meeting this year and still in clinical trials, which it sounds like this patient would qualify to be part of. But that's just me. Even those - with some pretty strong new data - are not going to replace what we currently use. But I can see those immune signaling pathway disruptors and similar monoclonal antibodies going mainstream as collateral treatments in the very near future.

I certainly, and OCF as an organization, will withhold judgment until there is some really hard data, peer reviewed and published, on the active chemicals in cannabis in head and neck cancers. There has been some NIH funding for looking more scientifically at it, and we'll see where that goes. In the meantime I would not argue with using it for things like appetite stimulation etc. where THC ability to deplete blood sugars to the point of being made hungry is both anecdotally and scientifically well established.

Ed has some serious experience here, and he has offered to take this conversation private which I would encourage. I also see no biological harms from use of this AFTER conventional therapies, which have a strong positive track record, have been used, and I think there is a consensus in the treatment community of lack of harm in doing so. Sadly this is all still a political football in so many ways.

So please discuss this amount yourselves off the boards, and it seems like it is about time for OCF to put a "current state of what we know" page up, though it will have a lot of maybe's and mights in it, and I will need to find the right doctors to help us craft it.

Thank you all for keeping this discussion civil and respectful.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
davidcpa #190133 06-29-2015 01:00 PM
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Thanks for the clarification and getting us all on the same page. As far as me, personally, I will tell 100.0% of the people that cross paths with me that NOTHING kills squamous cell carcinoma EXCEPT radiation cumulative dose of = or > 50 Gy of ionizing radiation, provided the tumor has tested + for the HPV oncogene, otherwise 70 Gy. Studies have shown certain chemotherapy agents have increased the probability of a more favorable outcome.

I offer this because one thing that is MOST important is exposure, getting the word out and letting all of us know what is going on in cancer world, collectively. We need to have the "elevator speeches" prepared at all times, one for the disease, one for our uniqueness. 10-15 second, sum it all up. Brian, would you please add, subtract or otherwise modify the message, if you will? I want to think we are carrying the same message, always.

As far as this discussion, honestly, there are no human studies of significance or reliance to say anything is going to absolutely do anything. Know this and find testamonials. Seek those people out and learn the similarities to what you are dealing with. Assume there are a limited number of pssobilities. This message is intended for those that have run out of options. My approach at that point is to help calm the soul, while finding anything that may hold a glimmer of hope. That means comfort with the goal of finding anything that has worked for any cancer. Then study that cancer, the symptoms, the treatment, etc., looking for similarities. It takes time and patience and you may know nothing more. But you did something. You do that till you don't want to any more.

This is why I study everything in terms of comfort care and pain relief. From how the symptom is manifested in the brain, nerves affected, etc. I don't bring at stuff here for a very specific reason. It is voodoo from a hippie magazine. I'm being extremely sarcastic in a friendly way, but there are NO scientific studies that even prove much of anything beyond nutrition. If anyone has run out of options, I will gladly share things via email, but not here. I won't dillute what has been done here.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
davidcpa #190135 06-29-2015 02:03 PM
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Brian and Uptown,

I agree with what you have both said. Often people turn to alternative treatments and then when those don't work, they go back to the standard treatments. By then, it may be too late for some and precious time has been wasted.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
davidcpa #190140 06-29-2015 09:11 PM
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Thank you, everyone, for your input.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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