Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Take Our Poll: How well do you feel your family understands your diagnosis?
Share your story: Your reflections about Mother's Day

Phoenix Tears Treatment Plan - An Experiment

Options
123457

Comments

  • simplelife4real
    simplelife4real Member Posts: 341
    Options

    Good stroy Bren....thanks for sharing.

  • twinkly
    twinkly Member Posts: 104
    Options

    Hi everyone,

    How are you all doing? I love getting the messages with news of your journeys, and have been so happy for the opportunity to answer your questions :)

    Well, I caused a hairline fracture in my sternum sneezing....ouch. This was so painful, I almost passed out. Afterwards, I could draw a line across my chest, from the centre of my sternum out towards the right, showing exactly where it was hurt.

    But since the sneeze (just a few weeks ago in early December) I have felt my sternum healing. It starts itching like crazy deep inside the bone. What seems to help most is the marijuana salve, which I also use all over my chest, and in my arm pits, etc. to help keep circulation flowing. It's made using grapeseed oil, beeswax and lots and lots of marijuana (strained out before it's bottled).

    I did learn that I need to bend over at the waist when sneezing. It hurts too much to hold something soft against my sternum, and then sneeze, which is what I tried to do at first. Thankfully, bending over when sneezing doesn't hurt at all :)

    I had the follow-up appointment with my onc (after the nuclear bone scan) a couple of weeks ago to discuss any questions I had regarding her recommendation that I begin taking tamoxifen and denosumab. I still hadn't made a decision. The reason I hesitate is simple....how can my body successfully fight this disease and Heal, if the medicine I'm taking for the disease causes toxic side effects that may or may not require more medicine prescribed to manage the side effects, etc.

    Overall, I am happy to give the medical marijuana a longer chance, because even though the cancer in my sternum hurts a lot, and even though the back of my neck still hurts sometimes, I've been feeling so much healthier all-round while I've been taking this medicine.

    Take care all!! Please keep posting your information! It's so good to hear your positive results and please keep your questions coming!!

    big hugs,

    Twinkly

  • twinkly
    twinkly Member Posts: 104
    Options

    ...I forgot to mention I am sure the medical marijuana has been helping every cell in my body in so many other ways...here are a few examples:

    For about two weeks now, I've been having hot flashes...about 2 to 4 a day. I've not had any hot flashes since passing through forced menopause in 2008/2009...I believe something is healing or getting into balance.....but right now, I'm not sure what :)

    Within months of starting the medicine, I couldn't hold my pee beyond thresholds I had consistently abused my entire life. Suddenly, from one day to the next, if I waited just one moment too long, the pee dance didn't save me any more. In fact, I had to start wearing those poise pads, just in case. This has gone on for months now, but recently, I've felt things are healing and getting back into balance somehow, and realize the pee dance has almost become a thing of the past....so something has been working out in the kidney/bladder region too.

    I've lost 50 pounds (much needed loss) since I started taking this medicine. It has given me an appetite for nutritionally dense foods, which has resulted in much smaller portion sizes. Turns out the nutritionally dense recipes I was using were 'paleo' (lots of veg, meat, meat broth, nuts & some fruit - that's it) so I follow this way of eating for at least 80% of the time.

  • badger
    badger Member Posts: 24,938
    Options

    hi twinkly!  Thanks for the update, love hearing from you and all the CBD ladies! ♥

  • ahunt2015
    ahunt2015 Member Posts: 1
    Options


    Hey there! I am wondering if cannabis oil interferes in any way with the uptake of tamoxifen? Stage 2-b lobular. Er/Pro+ Her2-. I had a BLM in July 2014, no chemo or rads. Tamoxifen and other AI for 10 years.

    I know that some antidepressants are contraindicated but I can't find much out about how the Oncs feel about adding the oil as I live in backwoods bumfuck NC.

    So glad I found this thread!

    Alisa

  • MemaSue56
    MemaSue56 Member Posts: 2,061
    Options

    Hi Twinkly.  I finally have been on Rick Simpsons tears (cannabid oil) for about 6 mos.  I am raising my own plant, 1st one, so will let you know how it turns out.  We are not in an area where we can have a hot house so I'm hoping the heat doesn't kill it.  So far so good. 

    Anyway, LOL at the poise pads.  Just told my DH last night 'gonna hafta get some'.  But I hate underwear so placing it would be, well, weird.  The con is the constant 'dry mouth', but's doable.  The pro is, my LVEF (left ventricle ejection fraction) has been holding around 63% since my dx in '11, last month it was 74%.  AND, my bones and joints don't ache a fraction as they used to.

    There is def something to be said, said thing is, we can't and most of our docs won't acknowledge it.  And all the money we are spending in fighting, well, I hope someday money is spent to determine exactly what cannabis does for healing.

    Lubs ya'll and of course positive healing energy blasting in your direction.

  • Mom2ABoy
    Mom2ABoy Member Posts: 125
    Options

    This is a fascinating topic. I've never used marijuana or any other drug recreationally in my life (if you don't count the occasional glass of wine), but I'd consider using anything nontoxic if it would help stave off the spread of this disease.

    While I've been reading this thread, I've been feeling extremely grateful that I live in a state where it's perfectly legal for anyone over 21 to just walk up to a marijuana store like they're walking up to any other store, go on inside, and just buy some. (That floors me every time I think about it, it's such a strange thing to see having lived 50+ years with the idea that it's illegal!)

    Anyway, here's my question: to get the forms of marijuana, CBD, THC, etc., that you're all discussing, does one have to get a prescription and go to a medical marijuana supplier? Or do the "pot stores" sell that type of thing too? Very curious! Thanks for any help, especially those of you in WA.

  • karabesque
    karabesque Member Posts: 37
    Options

    Hi,


    I just found this thread and I hope that the CBD ladies are still around. I was diagnosed in August 2014 and put off doing any traditional treatments until I was able to give cannabis oil and some other alternative treatments a try. I live in New Mexico and got my medical card in a week after applying. A friend of mine has a friend that is a grower and they donated a pound of marijuana to me and made me the oil. I was working at the time and I could not do the protocol as directed since the medicine made me extremely neurotic if I took the full dose. After 3 months, I had a physical exam from my MO and the tumor had shrunk a bit but since it was so big ( 13cm at surgery), I had to opt to do surgery. Initially, I was told I only had to have the mastectomy but the lymph removal showed cancer in 14 of 21 nodes. So chemo and radiation were put on the menu. I will have my 3rd AC treatment of four on Wednesday followed by 12 weeks of T. Reconstruction and radiation (20 treatments) will follow.


    I have been doing CBDs and low dose of RSO along with cannabutter (marijuana infused coconut oil) every day. My hope is that the cannabinoids act as a helper to the chemo and also support my body and mind. I do not like to be high so my dosage is low and admitedly, self-prescribed. I have yet to find a doctor here that will prescribe and work with CBDs although my entire medical team is behind me using it 100%. In fact, my plastic surgeon has asked me to check in and give him reports on my experiences. This is all such new territory for everyone.


    Since I was using the medicine before I started chemo I am not sure how much it has helped with SEs. I can say that I am slightly nauseous and fatigued and that is the extent, besides hair loss, of my SEs. The THC in the cannabutter helps with depression and my motivation to do things. I am gradually increasing my RSO and take it only at night. It helps with insomnia and I am able to sleep at least 10 hours at night. I feel that is when the healing is done.


    I have heard cannabinoids referred to as natures nanobots. They seek out where the healing is needed and do their thing!


    I am looking forward to hearing about others experiences with using medical marijuana and am here for any one else if I can help. As I said, this is all new territory and we are the explorers, students, scientists, researchers, subjects and teachers. And I am excited about what we can find.
  • Srh242
    Srh242 Member Posts: 139
    Options

    from what I have seen high cannabinoid oil ratio is better for hormonal .

  • Srh242
    Srh242 Member Posts: 139
    Options

    from what I have seen high cannabinoid oil ratio is better for hormonal .

  • twinkly
    twinkly Member Posts: 104
    Options

    Dear fellow travellers,

    It's been some time since I was here.  I've had an interesting journey these past few months.

    I've now been on medical marijuana for 1 year and 4 months.   

    When I started, I tried to build my resistance on inferior product.  When my first order from the medical marijuana lab arrived after using the inferior product for one month, I took a full gram dosage on day one, another full gram on day two and another one on day three.  On day four, I woke up in a full blown psychotic episode (panic / anxiety attack) that put me in hell for ten days.

    Had a PET scan in January 2014 - showed cancer in the upper third of the sternum.

    A bone scan in September 2014 showed the disease progressed throughout the sternum.

    Went for another PET scan in January 2015.  This confirmed the progression into the full sternum, but showing no other areas of involvement. 

    Started taking tamoxifen for the first time (I had my ovaries removed, to avoid taking this drug).

    After 35 days taking the standard 20 ml dosage, I could no longer get out of bed....move my body, or even breathe without extreme pain.  Turns out a side effect of tamoxifen causes pain in the tumor, and if the tumor is in a bone, then there is bone pain as well.  I had five episodes of almost fainting (when the pain gets to be 10 out of 10) and barely held on.  Falling would have hurt too much.

    So I stopped taking tamoxifen for five weeks, until it had worked its way out of my system enough to move without too much pain.  Now I'm self titrating the dosage (with my oncologists help).  I've been able to manage 5 ml per day for 8 out of 12 days...and then the pain becomes too much.  I'm slowly building up my dosage, and the only other side effects I have are being tired (naps are my best friend).

    It is now 18 months since my diagnosis of Stage 4 metastatic breast cancer in the sternum.  I am enjoying a quality of life that I know in my heart is due to the following:

    1.  changed my diet to paleo (80% of the time only...so I don't need to think about dieting - I've now lost over 75 pounds :)

    2.  medical marijuana - I take my tears at night, before I go to bed and take the water resin and fresh juice during the day, because I don't like to feel high either, and this strategy works perfectly for me.

    3.  tamoxifen - this is supposed to disrupt the hormones in my body, that the cancer finds so appetizing, which will then allow the medical marijuana to do it's thing.  I found a study (that I can't understand a word of)about medical marijuana effects on tamoxifen....so I sent to my naturopathic oncologist asking for clarification (the gentleman who recommended I start taking medical marijuana) and he indicated that medical marijuana helps the tamoxifen to be even more effective....

     

    And that's where I'm at today.

    If you have Any questions at all, about anything to do with medical marijuana, dosages, etc. please send me a message, and I'll get back to you asap.

    Also note:  CBD isn't psychoactive.  Only THC is (and it needs to be dried and heated to a certain temperature before it is psychoactive). Take as much CBD as you can get your hands on...ideally you would have two times the amount of CBD as THC, or at least a 1:1 ratio. The CBD tempers the 'high' from the THC, hence, this is why growers have been breeding CBD out of their cannabis strains over the past decades, because they didn't want to minimize the effectiveness of the THC in their plants. 

     

     

  • Srh242
    Srh242 Member Posts: 139
    Options

    Hi Twinkly:

    I talked to this cannabis experts at the San Diego Cure to Cancer Summit and from personal anecdotes low thc is better for hormone positive.High thc can cause the cancer to spread apparently, so you need high cannabinoid This is the link:

    http://www.unitedpatientsgroup.com/blog/2015/06/02/treating-breast-cancer-with-cannabis-why-the-treatment-must-match-the-classification/

  • badger
    badger Member Posts: 24,938
    Options

    ((twinkly)) thx for the update, always great to hear from you and the CBD ladies. ♥ to all

  • mkinoly
    mkinoly Member Posts: 11
    Options

    May I join you, CBD ladies? :) I've read this thread thoroughly and have gotten so much useful information from it. It's beyond helpful to read about women's actual experiences using CBD oil. I understand it all so much better now. I'm reading other things online and through links you've posted.

    I am going to start using CBD oil tomorrow. I live in Washington state where you can barely go 1 mile it seems without seeing a dispensary. Through the Leafly app my wife and I have decided on a place to go to tomorrow. We plan on getting an oil that is 80% CBD 20% THC, or maybe even 90/10, depending on the recommendation of the employees. I want to use it for sleep--I've had sleep issues my entire life. I know how important and healing getting good sleep is, especially after my mastectomy in about a month. My wife had lung cancer 3 years ago, so we both want the anti-cancer benefits, and she also wants to replace her sleep med (trazadone) with CBD oil.

    I'm happy to post the name of the oil we end up getting and to add my experiences to this thread. When I saw a naturopathic oncologist last week I asked about CBD oil, but although he acknowledged there are good studies showing its benefit, he wanted me to use melatonin for sleep instead and did not recommend CBD. Oh well, I'm still doing it! :)

    I'll share this experience that amused me: two weeks ago we went to Ocean Shores (Pacific Ocean coast) to relax and deal with this unexpected cancer diagnosis of mine. On the way we saw 2 different billboards advertising marijuana and specifying it's legal in WA, as if it was a draw for tourists or something, which it may well be. It just surprised me seeing it used as tourist marketing!

    Maureen

  • karabesque
    karabesque Member Posts: 37
    Options

    Welcome, Maureen although I am sorry for the circumstances. I have been using RSO at night for almost a year now and I use straight CBD oil during the day. It does help me sleep as long as I fall before I start to get high because it really spins my head. You will find your cycle, I'm sure. Good Luck!

  • mkinoly
    mkinoly Member Posts: 11
    Options

    Well, I went to 3 recreational pot shops around town and none of them carry anything like I'm looking for. The closest product was a tincture that was like 25% CBD and 21% THC. Plus it was $45 for just 10 doses!! One place had a super high CBD with low THC but it was only for smoking, which I don't want to do. One place said I'd have to go to a medicinal shop with a prescription/card to get what I want. Which is sort of funny (maddening) because the whole legalize marijuana thing emphasized the medical benefits, but the retail shops mostly just carry stuff to get people high.

    I asked the naturopathic oncologist and my primary physician for a prescription and they both won't. I guess nobody within my medical group can/will. What the heck? How do I get medicinal marijuana from a medical dispensary without that? I'll have to do some more research.

  • karabesque
    karabesque Member Posts: 37
    Options

    That is really frustrating. MMJ IS expensive and insurance does not cover it. It is, however, a tax write off so keep your receipts! The dispensary I go to will also give me a print out of my total spend for the year. One guy spent over 40k on MMJ last year!

    I am fortunate to have a friend that is in the business and has donated the RSO to me. I do buy just CBD capsules for the daytime because I really don't like to be high.

    I'm surprised no doctor will give you a script so you can get your medical card. Here in NM, I just had to fill out a few forms and I had my card within a week. They fast track cancer patients. I did go to my OBGYN for it. I would ask every medical professional you see. Maybe even call a medical dispensary and ask if they have any doctor that does referrals.. but that may be illegal for them to tell you. I wish you the best of luck. It makes me so mad that this extremely powerful and amazing medicine is not available to the people that need it. THAT should be illegal!

  • mkinoly
    mkinoly Member Posts: 11
    Options

    I finally got my medical marijuana authorization! I had to go see a certain naturopathic doctor twice (totalling $200) and give him my medical records. He had lots of good ideas for me for my various issues and I'll be trying some of them. At the end of the second visit I got the authorization. Today I went and got 1 gram Rick Simpson oil and a bottle of CBD oil tincture. They gave me the RSO--they are a "collective" and instead of charging money they ask for suggested donations plus they give free RSO to cancer patients! The CBD tincture was $25 and should last awhile since they recommend 1/2 dropper for a dose.

    Are any of you ladies still using these types of products? How is it going?

  • rosiesgirl
    rosiesgirl Member Posts: 24
    Options

    Hello everyone! I just got my card and am starting on MMJ. I have tincture of CBD and also THC. I am using both with the hopes that it will handle my CIPN and Radiation induced Fibrosis as well as truncal lymphedema pain. The doctor I saw to get my card recommended the THC for bedtime since pain prevents me from sleeping more than 4 hours a night. I'll let you know how I do. They recommended RSO at the dispensary where I went and I am going to get some next time. I also got herb for vaping, but I don't know if I can handle the bad taste. I will let you know how it does. I am keeping notes and will post when I have an opinion on how it is doing. I am flying to Florida tomorrow, so unfortunately I will have to stop using fro the next week since I cannot take it with me.

  • jojo68
    jojo68 Member Posts: 336
    Options

    Hi ladies! Pennsylvania has now passed the medical marijuana bill so I am excited. But, I notice nobody has posted here for the last 5 months or so?

    Twinkly, are you still taking the CBD?THC and if so, how are you? I don't even know where to begin with this...

  • twinkly
    twinkly Member Posts: 104
    Options

    Hi Jojo, take as much CBD as you possibly can....I've sent you info in a message but will also include here, in case anyone else is interested....

    I recently stopped taking all of my medical marijuana after two years. I took phoenix tears, fresh juice from the fan leaves, suppositories, CBD, and used salve made with marijuana on my scars, and the area that was radiated.

    Pain is minimal, and I'm working on my liver now, with coffee enemas. These are fantastic and a gentle way to detox for anyone who's undergone chemo, or taken any other toxic cancer drugs. Use the enema coffee from sawilsons.com. I can't stress highly enough how amazingly healing coffee enemas are to our livers, and ergo, to our entire system.

    I suggest you watch 'the quest for the cure' to understand more about how the conventional treatments have harmed your immune system. Once you heal your immune system, cancer can't live in you anymore. It's that simple, and no doctor out there is taught this in their pharmaceutically trained medical school. In order to scientifically research cancer on living tissue, scientists have to compromise the immune system absolutely, before the cancer will 'take'. Otherwise, the immune system kills the cancer cells, which is what a healthy immune system does. So heal your immune system, and potentially heal your cancer.

    I've also lost tons of weight by going on a paleo diet, which has helped a lot.

    You need to find a really good supply of phoenix tears. You should be able to tell by the taste....and your body should feel like it's humming with good health when you take them. Try a few different varieties and listen to your body, as it will tell you which one is the purest, and which one you should take. I would bypass taking all medical marijuana orally, and create suppositories. We absorb up to 70% of the healing cannabinoids in the med. mar. when we take it via suppository. If we take orally, we only get about 30% into our system. Don't bother smoking, unless you're in a lot of pain, as only 15% ish of the cannabinoids are absorbed into our system through the lungs.

    Also, as long as you can get the phoenix tears, you can make your own suppositories....just find an ice cube tray that makes little ice cubes that you believe will 'fit'....take your syringe of phoenix tears (1 gram or ml) and squeeze out into a container with virgin coconut oil (that has been heated in the microwave until it's very warm and liquid). Mix well and cool until just warm, then pour into ice cube tray and freeze. One gram or ml of phoenix tears should make about 4 - 5 suppositories, so that will tell you how much coconut oil to use. Make sure you use a high quality 'raw virgin' coconut oil, as it's all organic, but you don't want the oil to come from the stuff that's dried and then sent to a factory to create into oil. Once frozen, pop out all suppositories and store in an air tight container in freezer. Take two suppositories in the morning (make sure you lie flat for at least 20 - 30 minutes) and then a couple before you go to bed. If you want to take a full gram every day....you can reduce this if money is a factor and just take one in the morning and one or two before bed. Your panties will become stained green, so be prepared.

    The thing about suppositories is, you don't get 'high' like you can get when eating the medicine orally. It bypasses digestion by the liver, so you will most likely avoid 80% of the high feeling you can get when you get started on them.

    Hope that helps! Please let me know how you are doing down the road.

    Twinkly

  • LvinAZ44
    LvinAZ44 Member Posts: 107
    Options

    hi. I love in AZ mmj state. The place I go had what they call rso and a product called Clear, cannabis oil. I have been unable to find Phoenix tears online. I do smoke some for pain and nausea but take want the oil to try.

  • twinkly
    twinkly Member Posts: 104
    Options

    hi Lvin, is 'rso' the same as 'rick simpson oil'??? It's worth asking. Basically you are looking for hash oil, which is the resin that comes from dried cannabis plants. You can also watch for free on youtube the Rick Simpson story, and learn all about it. I don't know what 'Clear' is, sorry.

  • LvinAZ44
    LvinAZ44 Member Posts: 107
    Options

    yes it is Rick Simpson oil. I saw the video pretty compelling stuff. I dint know if Phoenix tears is same as rso?

  • twinkly
    twinkly Member Posts: 104
    Options

    yes, Rick was the one who coined the term 'Phoenix Tears'.

  • Rosieo
    Rosieo Member Posts: 200
    Options

    I so want to try the CBD oil. I purchased some at our health food store. The person who sold it to me said to take a dropper every day under the tongue.

    I am on chemo, so I have not used it yet. I am afraid it will intefere with the chemo and I know betterto ask my oncologist. I know he will say not to take it. Any advice Ladies. Thanks for this thread Twinkly

    Rosieo

  • Rosieo
    Rosieo Member Posts: 200
    Options

    livin

    You say you smoke it. I am afraid to do that too. I do have a "joint" someone gave me but I never smoked in my life and don't even know how to try it. :-)

    Pointers on that if you can. :-)

    Rosieo

  • abigail48
    abigail48 Member Posts: 337
    Options

    she's right. don't smoke anything, not good, very bad for lung function. there's something called a vaporizer now, not sure if that's good or better.

  • cb123
    cb123 Member Posts: 80
    Options

    Hi Guys,

    You know Rick Simpson has a Facebook page? You might find more info there.

    Rick Simpson Official Facebook

    cb

  • jojo71
    jojo71 Member Posts: 20
    Options

    Twinkly,


    I'm taking RSO, too. I'm disappointed to see that it wasn't enough to heal your cancer completely.



    Joellen

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.