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Old 04-04-2015, 05:28 PM   #21
KDR
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

The cannabis oil, or Rick Simpson Oil, is the curative method of the plant. It is oil that is extracted from the plants. No smoking. You can google Rick Simpson Oil or Phoenix Tears to learn more.

Best,
Karen
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Old 04-06-2015, 10:45 PM   #22
IrvineFriend
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Linn,

Not all types of pot have the same affect. I also hate the paranoid feeling but the variety I took during chemo did not do this at all. I bought about 4 kinds and then stuck with the one that gave me an appetite without the negative side affect
__________________
Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 04-06-2015, 10:51 PM   #23
IrvineFriend
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

By the way, unless someone finds a way to patent a combination of THC and something else, it will never get approved because there wouldn't be any incentive to spend the millions of dollars to fund all the clinical trials and go through the FDA approval process unless you can patent the drug. I think it's about a million dollars just to have FDA review your application.
__________________
Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 04-08-2015, 05:37 AM   #24
teresamd0906
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Google "Rick Simpson Cannabis Oil"
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Old 04-08-2015, 10:36 PM   #25
waterdreamer
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

I went to a medical marijuana lecture and the doctor said that it is the CBD's that affect cancer positively especially if you are Her2+, he advised staying away from marijuana if your cancer is hormone positive. Our bodies have their own cannaboid system, and cannaboids are found in breastmilk. It is the THC component that makes one high and also lowers blood pressure. I already have low blood pressure. The clinical trial due to start in Israel soon is only testing CBD - so you do not have to worry about getting high.
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 04-09-2015, 09:33 AM   #26
KDR
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Thanks for that information, Fern. It's complicated. Conflicting. At first I thought it was CBDs, which would make sense as the cells have CBD receptors. Then, I was told I was wrong, that it's the THC, and the high THC level that matters most. It is not for smoking, it's ingesting only. Some people have taken to making suppositories so avoid the fatigue and sleepiness altogether. Good to hear from you. Haven't started it yet myself because I still don't feel I've gotten all the information I need to do it "right."

Love
Karen
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Old 04-12-2015, 11:55 PM   #27
waterdreamer
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Thanks Karen, you are amazing, we will figure it out. I am still not doing any chemo, just natural stuff. I do have another brain met 4mm, which I am going to radiate at UCLA. My markers have just been climbing, CEA 111, and interestingly CA125 is now 358 - but an HE4 test was in the normal range. I am feeling great, doing Doxycyclin, LDN and sometimes Metformin.

Sending love, and still looking at CBD's
https://www.clinicaltrials.gov/ct2/s...cr=Open&rank=5
__________________
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.


Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 – Thoracentesis 1500 ml drained from right lung.
June 2016 – CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 – Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 09-01-2015, 05:03 AM   #28
Ais4Abbott
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Search Donald Abrams and Cannabis on YouTube. Dr. Donald Abrams is the Chief of Oncology and Hematology at San Francisco General Hospital. He puts a little umph in it all. His friends (other Doctors) are on these videos, too. Best wishes. He just published a paper about Cancer and Cannabis. He's been trying to publish one for years. It just became main street enough to be accepted.
__________________
2007 DX DCIS ER-/PR-/Her2+
2007 3x lumpectomy, radiation
2010 DX DCIS ER-/PR-/Her2+
Mastectomy
Tram Flap - 1) wish I could delete that.
2)Interested if anyone did this, and then got implants. 3)Ruined stomach muscle. (Appreciate info about fixing this).
Recommend New Orleans instead of MD Anderson for all surgery.
12/17/2010 TCH 6x/3wks Herceptin 3/wks til 11/17/11.
12/23/2010 Lost Hair - 10/5/2011 Wig free - 4/14/2013 Long Hair again.
Severe nail detachment-(Past) 10/2011 - toenails still trying to grow back. 4/14/2013 - Normal toenails & fingernails.
Severe neuropathy (upper thighs/upper arms) - taser sensation - (in the past), light touch finger or toes = burning. Sock free (still). Can bend knees and ankles, now. Dr. stopped Docetaxel after 5th, due to possible permanent nerve damage. (now in hands/fingers, feet/toes - pain, interested in help). 4/14/2013 - Neuropathy much less. Nerve damage is permanent in fingers & toes, hands & feet. Toekini ($10) from CVS pharmacy works great for my CIPN - feet at night. Nothing can touch my toes without burning me. I can not braid hair - fingertips do not work right.
Severe constipation - (made worse by drinking small swallow of water with Senecot instead of a full glass of water - caused concrete type blockage of bowels - drink lots of water with it!)-(Past)
Severe Reflux - (great medicine available for this) - Carafate (past)
4/14/2013 Much happier now. Smiling a lot. Started working in the yard again, but must wear toeless sandals. Blessed. Best wishes & Blessings to you all. Has anyone had success with Rick Simpson Oil in curing HER2? Very interested in hearing details. I live in Texas and do not know anyone that has tried it. We can not use it here.
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Old 09-02-2015, 10:02 PM   #29
Inger13
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

I was her2nu in florida so couldn't do cannabis. Now bcc skin cancer. I am also a lawyer here and I am going to specialize in cannabis to help us and others and kids with brain rumors. I know it cures some cancers and helps with other symptoms. So anything I can for anyone here in florida let me know. This is one of my missions. Thank you for all your support and for being open here.
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Old 06-12-2018, 07:58 AM   #30
Ais4Abbott
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Posts: 15
Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Hi Waterdreamer, My heart goes out to you. I hope you are still with us.
__________________
2007 DX DCIS ER-/PR-/Her2+
2007 3x lumpectomy, radiation
2010 DX DCIS ER-/PR-/Her2+
Mastectomy
Tram Flap - 1) wish I could delete that.
2)Interested if anyone did this, and then got implants. 3)Ruined stomach muscle. (Appreciate info about fixing this).
Recommend New Orleans instead of MD Anderson for all surgery.
12/17/2010 TCH 6x/3wks Herceptin 3/wks til 11/17/11.
12/23/2010 Lost Hair - 10/5/2011 Wig free - 4/14/2013 Long Hair again.
Severe nail detachment-(Past) 10/2011 - toenails still trying to grow back. 4/14/2013 - Normal toenails & fingernails.
Severe neuropathy (upper thighs/upper arms) - taser sensation - (in the past), light touch finger or toes = burning. Sock free (still). Can bend knees and ankles, now. Dr. stopped Docetaxel after 5th, due to possible permanent nerve damage. (now in hands/fingers, feet/toes - pain, interested in help). 4/14/2013 - Neuropathy much less. Nerve damage is permanent in fingers & toes, hands & feet. Toekini ($10) from CVS pharmacy works great for my CIPN - feet at night. Nothing can touch my toes without burning me. I can not braid hair - fingertips do not work right.
Severe constipation - (made worse by drinking small swallow of water with Senecot instead of a full glass of water - caused concrete type blockage of bowels - drink lots of water with it!)-(Past)
Severe Reflux - (great medicine available for this) - Carafate (past)
4/14/2013 Much happier now. Smiling a lot. Started working in the yard again, but must wear toeless sandals. Blessed. Best wishes & Blessings to you all. Has anyone had success with Rick Simpson Oil in curing HER2? Very interested in hearing details. I live in Texas and do not know anyone that has tried it. We can not use it here.
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Old 06-15-2018, 12:56 AM   #31
VDC
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Smile Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Let me clarify a bit on cannabis. I have been working with a researcher who is very well versed on cannabis. Here is what we know.


For HER2+ disease, there is an 80% likelihood that tumors will overexpress CB2 receptors. This is the receptor that THC targets. So for HER2+ disease a 1:1 ratio of CBD to THC is recommended. Usually around 125 mg of CBD to 125 THC in a 24 hours period.



However, for the other 20% that does not overexpress CB2 receptors THC can actually make the cancer grow much more quickly. This is because THC actually suppresses the immune system. Fro thoser tumors that overexpress CB2 that isn't a problem because the THC is shutting down the tumor by binding with CB2. BUT for cancer that does NOT overexpress the CB2 receptors that immune suppression allows the cancer to explode and grow. This is what is being seen in women. This is particularly true for women who have hormone positive disease. Hormone positive breast cancer is less likely to overexpress HER2 in the tumor. And it is more likely to grow with the addition of THC.


The recommendation for hormone positive disease is higher CBD than THC. The usual recommendation is 125 mg CBD and 25 mg THC .


The old Rick Simpson recommendation of a gram a day and high in THC only worked for HER2+ disease or in disease that had an overexpression of CB2 receptors. But it didn't work for everyone else and often caused greater growth. For the most part this Rick Simpson Protocol has been debunked by the true research.



CB1 is the receptor hit by CBD oil. This seems to be a good target for everyone regardless of hormone status or HER2 status. But as things are being learned, it appears that CBD doesn't work as well unless there is SOME THC also. And what seems to be working for women is about 4:1 or 5:1 CBD to THC with 125 mg of CBD and 25 mg of THC.



My own experience is still shaking my world. I had HER2+ hormone negative disease in 2016, and had surgery in October of the same year. I was told that I had a 35-40% chance of recurrence within 5 years. I did a LOT of research! (I am an Organic/Biochem gal by training, education and trade) A few months after y surgery and the end of treatment, I decided to add cannabis oil to my life (against everything I have ever believed about cannabis). Because i had no way to monitor the effect of cannabis on my cancer (I was considered cancer free so there was nothing to monitor for effectiveness) I wasn't keen on trying the higher THC protocol. I decided to take 125 mg of CBD and 20-25 mg of THC in a 24 hour period. I never dreamed there would be a way to know if it was helping keep my cancer at bay.



However, last December when I had my yearly MRI, They found a new spot in the tumor bed. It was biopsied and found to be a very very rare kind of cell. It is rare and even when it is found, it is usually in young women. BUT it wasn't cancer and I was elated!



Then the researcher that I have been working with, asked if she could share my pathology report with Dr. Sanchez in Spain. Dr. Sanchez is a researcher working on cannabis and cancer. I consented as long as my name wasn't included. Dr. Sanchez was excited about my biopsy because she said this kind of cell is exactly what she finds when she treats breast cancer with cannabis. She felt my pathology report was the proof of what she sees in her lab.



I can't prove it. IT could be just a really big coincidence. But it would be one in a million if it is a coincidence. What are the chances of finding this particular kind of cell exactly in the tumor bed? Very rare indeed.


I personally do believe that the cannabis kept my cancer from returning. My oncologist admitted she was very very surprised that my cancer hasn't returned. She thought I would recur within the first year. with my ONCO DX score of 79, it was off the charts literally. Everyone assumed I would recur quickly. But it has been 20 months and I am still cancer free......even if I DO have those rare cells in the tumor bed!



Anyway, the research on cannabis is ongoing. It is hard for women and others to keep up on the latest research on it. And it is even harder to ferret out the differences in Breast Cancer and how each component of cannabis must be tailored to the kind of Breast cancer. It IS NOT a one size fits all!



And one more thing. Cannabis is NOT safe to take with some cancer medications. There have been cases of death by women who took cannabis while taking other cancer medications. Cannabis uses some of the same breakdown pathways as other drugs. This means that cannabis can make other medications increase in concentration in the body. And sometimes those can be dangerous at higher levels. You can use a "drug checker" to check for interactions but cannabis is rarely found in those drug checkers. It is possible to use "grapefruit" as a surrogate for cannabis when using the drug checkers. But my advice would be to seek out a knowledgeable cannabis doctor or nurse who knows which medications interact with cannabis.
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Old 06-15-2018, 01:03 AM   #32
VDC
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

p.s. very very very little is absorbed with rectal use. It is literally "flushing $$$ down the toilet" There have been some studies where the blood level of cannabis was monitored after oral ingestion, And also after rectal administration. The oral use saw an increase in the blood concentration, while the rectal did not. The reason there is no ""high" after rectal administration? That is because it simply ish't absorbed (at least not much is)
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Old 06-15-2018, 07:10 AM   #33
IrvineFriend
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Re: HER-2 Positive & Triple Negative = Cannabis Intervention

Thank you so much for your information! (I'm another Biochemistry gal ... . I work in the biotechnology field (primarily in the drug discovery/ product development side) and our company has a dispensary across the street (it's in plain view with valet parking, etc so it's VERY busy) so I know what people in the biotech/ pharma field feel about cannabis and there is so much shame associated with using it. I personally use cannabis because I believe in the research being done. The largest country doing clinical trials with cannabis is Israel. My cancer was extensive and in my lymph nodes (4 macro tumors) and I've remained cancer free. I have no way to associate it with cannabis but it's safer than a glass of wine at night

-Julie
__________________
Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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