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Posted on: Dec 13, 2016 03:08PM
I've had several people PM and want to know what I did for treatment and I've been bad about answering them but time has been in short supply so I just thought I'd put this up here. I am not calling myself a success story and in no way would my path be for everyone but some are wondering what I've done and what I'm willing to live with. Turns out I'm really comfortable with uncertainty, which I suppose is a strength and certainly one I never realized I had. Slowly in my life my personality has revealed itself little by little and I still surprise myself.
I got dx'ed mid-November 3 years ago and it was completely overwhelming to me. My husband had left me a few years before this after a very long marriage, I was a very new empty nester, and I had started not just a new job, but a new career as a special ed teacher, under very trying circumstances and after having to move to take the position. The lump was not a lump--it was a subtle rippling under the skin of my left breast and I saw it in the mirror one morning. I'm normally a procrastinator but I got right in and got it checked and it was certainly BC.
They started right away making mistakes with my tests and such. I had to miss an important scan b/c they failed to schedule it in line with when my period was due. One male doc told me lumpectomy but the more competent woman surgeon in St. Louis marched in and said grandly, "Off with the boobs!" Well she said something like that. I went ahead and scheduled it for January of 2014, but the more I thought about chemo and radiation, the more reluctant I felt and of course I was googling like crazy and reading many books.
I wanted to do holistic but wasn't even sure where to start. Thought I'd start with detox but much of what I read said don't do it if you still have metal fillings so I made an appointment with a holistic doc in St. Louis, 2-½ hours from home. The appt was on Monday and the surgery was scheduled for Friday of the same week. The doc took a look at me and told me I didn't look too bad and suggested that if I were willing to postpone the surgery, he figured he could help me knock it down to a lumpectomy, or possibly no surgery at all. The idea of canceling a major surgery was really scary b/c what if they got mad and refused to treat me after that. I decided to go ahead and do it anyway and immediately felt like a huge weight was lifted off my soul--I was very peaceful about my decision. By this time I had been on the ketogenic diet for 2 weeks and the cancer seemed to have stopped growing. I had felt it grow before--now it had stopped and all it took was to get the sugars out. I might add that I'd had a terrible sugar addiction all my life so I wasn't terribly surprised by this.
At this point I'm going to stop and tell you all why my reluctance to do conventional care. The first and most obvious one was the fact that I've always been a wannabe hippie. I was 5 years too late for the real fun, so I thought, but had always fooled about with herbs and making my own salves and herb teas and such and I actually think this is fun. The other reason was darker--only a year before as I was going thru mom's stuff after she died, I found pix of her aunt who had died of BC. She had a rare reaction to the chemo they used and was burned from the inside out. The pictures were horrific and I remembered some of the things they used to whisper about the case when she was dying--I wouldn't wish such a fate on Hitler. I knew that I wasn't going to do that. Some have pointed out that cancer meds have changed a lot in the last 25 years but when the MO gave me a list of what he wanted to use, that one was on the list. I knew it was a rare side effect but we were related.So I will stop here and resume in another post b/c this one is getting really long. BRB.
Posts 91 - 120 (122 total)
Jul 14, 2018 04:22PM - edited Jul 14, 2018 04:36PM by NeverForsaken
Thanks for all the information and testimony. After getting dx stage 4 I made the decisions to repeat chemo again..even though chemo did not prevent a future dx (recurrence) after the first dx. And just like the first time around I made this decision out of fear. I did not take any time to even think about alternatives, and my MO did not hesitate to set up my first chemo the same day he read off my PET scan report to us! But today I take all responsibility for my health care decisions and am not blaming the doctors or anyone else for pushing the conventional route (That is their job after all) And feeling bitter against any of them only adds to the toxic thought patterns that help us to develop cancer in the first place.
I am a stickler for result-based anything..so when I first changed my diet to a (mostly)vegan one, I said nothing to anyone outside my family until I got my blood results and they showed everything was at an optimal level except for the white blood counts that took much longer to rebound after chemo.
After chemo I changed my diet but I still reluctantly had 33 rounds of rads targeted to my axillary area and a small incision where a tiny tumor was removed low on my scapula. I had no (obvious) or immediate adverse effects from the rads other than the fatigue. The RO was mystified by this..I just told him that even though I understood that the radiation was not the same as a thermal burn, I equated my lack of damage to the area as being protected in much the same way as the 3 Hebrew children who were thrown into the fire in the Bible story coming out without a burn..That was because of my faith and prayer.
After the rads I was so fatigued that I had no energy for sticking to my healthier diet and excercise became more difficult, so I began feeling awful and my other health problems such as arthritis and back injuries begane to really surface more and more. It wasn't until very recently I have started back to a healthier diet and mindset once again. I do intend to continue with the targeted therapies for the HER2++ cancers for as long as they are effective and my heart does not suffer damage.
So, moving forward I have decided that I will never make another medical decision based in fear, but i will instead keep my faith and keep my head when it comes to doing what's right for me.
I also recognise that not everyone is on the same path of life, and what I do or don't do is up to me and it wouldn't work for others unless they were at the same place in life as I am because whatever we decide takes a multi-leveled approach and lots of determination and hard work..and all this can only occur when one is fully persuaded to go the route.
I also recognize that since I am dx stage 4, my decision may be different than someone with an early stage.. that doesn't mean that if you are dx an earlier stage your decision to forgo the typical medical tx route is not wrong for you. It is ultimately your decision to make too.
@Mapat~ Yes, Dr.Barnard and Dr. Michael Gregor have some great information regarding the benefits from nutrition..Thanks for including links to their videos..I have been researching a lot for many months because of them too.
@piper's dream~ I am going shopping for a rebounder now since I too live far from any gym..and thank you for sharing your journey!
Jul 15, 2018 07:32AM LoveFromPhilly wrote:I appreciate this post!
Jul 15, 2018 02:37PM 1redgirl wrote:Brenda - lovely post.
Dec 6, 2018 10:16AM pipers_dream wrote:
neverforsaken, you made a really good point in speaking about getting pushed into tx thru fear. Fear is never healthy, and the stress of a dx is terrifying as we all know, and stress is what got a lot of us into this in the first place. One thing that I’ve noticed in most of the holistic books I’ve read is that they talk about things you can do along with conventional tx. One of the most interesting things I’ve read about is fasting with chemo—you have much less nausea and side effects. Obviously you don’t want to do this if you have cachexia.
Lovefromphilly I wonder what herbs and supposed you’re using? It surely doesn’t feel fair to have taken such good care of yourself and you still got this beast. I’ve got to say though that the bravest people I know are the ones doing conventional tx...I was too scared. But also I felt it highly likely that I wouldn’t respond well to conventional tx.
1Redgirl, I can def relate to what you said about diet. I have thought about this a lot and I think that those of us who got cancer through eating too much sugar will have the easiest time of doing holistic because the good news is that we just have to change our diets. It’s tougher for those like lovefromphilly that were already doing everything right. I mean, where do you go from there?
Feb 21, 2019 10:20PM pipers_dream wrote:
I thought I’d check in. As some of you may recall, I lost my teaching position and decided to go on the road and live in a van and that is something I’d always wanted to do. I’ve been out for six months now and for the first three i was slipping off my plan. I ended up having to make a trip home thru all this because my sis got uterine cancer and had a hysterectomy but she seems to be fine now. The positive of that was that I rededicated myself back to my diet and supplements and got back out on the road. I did start to get nervous so when I got to Tucson I sought out a holistic doc for vitamin C IVs and they took blood tests including cancer markers and my results were excellent. The only reason I can think of for that is that I had laid the groundwork early on with chelation therapy and getting my mercury fillings replaced five years ago when I first got dxed. So, something has got to be working because I was dxed with stage III five years ago and from what the doc can tell, with no surgery I mean, is that I’m still stage III.
Feb 23, 2019 05:05PM pipers_dream wrote:
I wanted to add that these are the supps my new doc recommends the most. First she wants me to do intermittent fasting and trending towards Keto so I have one meal a day with my only carbs coming from fruits and veggies. In the morning before I eat I have 2 woebenzym pills (enzymes), 2 ECGC green tea pills, and one curcumin. Then I do the same a couple of hours later. Also she wants me to take DIM and 15,000 IV per day of vitamin D...I got off my program too long and the level dropped to 25 and she wants it over 100. Also I tested positive for the MTHFR mutation so I need special B vitamins, at least one green salad/day for folate, and need to avoid all enriched grain products because folic acid is poison for us. Also I eat a lot of flax seeds by nibbling on them while I drive. I feel fabulous and try to hike or work out every day and hiked 8-1/2 miles the other day so energy levels are high at almost 60. I wondered when I got this dx if I would make it to 60, and it looks imminent in May and I won’t be complaining about my age
Mar 18, 2019 08:10PM jo6359 wrote:
pipers_dream-Are you still camping and hiking?
Mar 18, 2019 11:31PM pipers_dream wrote:
yes Fl, I am still traveling . I’m getting vitamin C IVs while on the road...docs refer me to one another. Life is good. I’ve fallen in love a little bit with someone totally inappropriate for me and have my first grand baby due June 8. Of course I’ll be there.
Sep 2, 2019 12:46PM pipers_dream wrote:
Checking in. I now have the most beautiful 3 months old grandson in the world and I’ve been staying in South America since he was born so I’m getting to spend a lot of time with him and my daughter. His mom got where she didn’t need me quite so much so I decided to go to Ecuador for a few weeks. As you all know, I have a huge interest in natural healing methods so rainforest medicine became the main focus of my trip. I toured a couple of ethnobotanical parks and asked 10,000 questions and yes my Spanish is coming along nicely lol.
Much to my great surprise, no one batted an eye when I told them about my health care plan because everyone I met either had healed their own cancer holistically or knew someone who had. One man told me he cured himself of melanoma with baking soda. His recipe: 1 teaspoon baking soda plus juice of three lemons in a big glass of water twice a day...once before breakfast and once before lunch for nine days wait a week then do it again with the breaks until tumor is gone. I had heard of this but didn’t think it would work but hell it’s cheap so I’m going to get on it when I get back to Santiago, especially since I have a lemon tree in my yard there.
I learned about at least two major plants that seem to cure cancer with a high success rate, according to natives. One is sangre de drago and the other is leche de sandí. Leche de sandí is known to be better for breast cancer but both are highly medicinal and both are from the sap of a tree. If my Spanish was better I could find more info online but this is one of those “everyone knows” kind of things here.
Now that I’ve gathered some info and talked to some people I’ve got a better idea which way I could go and may choose to book a trip back in a few months. Either that or I’ve learned the name of an Ecuadoran woman who is now in the states and her husband told me that she’s had great success with breast cancer. Now brace yourself for this one...that same husband suggested that urine therapy is the best method of healing! Yes I’m talking about drinking your own urine! I was polite. Lol. I did have a taste one morning in the shower and it wasn’t as bad as I thought but I’m not ready to take the plunge
May 22, 2020 11:22AM pipers_dream wrote:
Well, things have changed quite a lot since we last spoke on here and I hardly know where to begin. Of course the covid going around is affecting all of us and I hope folks on here are weathering it well but I’m totally concerned about the stress we’re all going thru. I hope you all have learned some good techniques for dealing with it.
In my personal life now the stress is enormous because when my cobra ran out, I signed up for Obamacare and had the entire questionnaire filled out and needed a bit of paperwork and then realized I’d answered a question wrong so fixed it and the website said it was too late, even tho I filed by the date it said to...well, it’s a mess. I made many calls but the only advice anyone could give me is that I could try to get on Medicaid or get a job with benefits. Well I’m not eligible for Medicaid and I cannot imagine that anyone would hire me at my age for a job with benefits...I’m a teacher, btw. Annnnddd...to top off the whole freak show, I just found out I tested positive for antibodies to hepatitis C! Which feels like a whole nother Cancer dx, only contagious and with a sense of shame. I don’t think I’ve ever seen a more dire outlook for my mental or physical health and I simply cannot think straight right now. And yes, due to all this, my cancer is spreading and the pain is starting
Whew, I managed to get all that out in one paragraph! That’s the end of the bad news. And now the good news...a friend, who happens to be a nurse, wanted me to come stay at his country property in the empty RV he has, and it’s a nice little place in the woods and remote enough I can run around nekkid if I want to. This is after my months long travel was coming to an end due to CV and I needed a safe place to land. I think he was getting lonesome out here by himself and likes having company nearby so it works well for both of us.
My point in telling you all of this is that I need to be straight up honest, though I hope I have been all along but I’ve learned new things all along the way. The brutal truth about alternative medicine is that while it’s possible to slow or even stop the progression, you’re not likely to beat it. During that time you will enjoy much better QOL than you will doing conventional care, but when life gets stressful or you fall off your strict program, it will start to grow again. You may be ok with that...I was...but you should know that going in. I asked for five years when I began my holistic program and it looks likely that I’ll make it to at least seven (from a stage III dx) but most would not be okay with that unless they’re older, in which case the holistic plan may be a better choice because they will have a better QOL. Everyone is different though and I think we should honor each other’s choices, even if you would never do that treatment plan yourself.
Also, I need to add that this has been a deeply spiritual journey for me and my body might be a shambles but my soul shines brighter than ever. I have met some amazing people during this time that I was busy ignoring cancer and I love my life but I’m not depressed about the thought of dying. The worst part will be sharing with friends and family where I really am in all this and they don’t even know about the hep C. My nurse friend does though. I’m in good hands.
May 22, 2020 05:30PM exbrnxgrl wrote:
Hi pipers dream,
I very sorry to hear about your set backs, especially on health insurance. It really is a national shame that anyone in this country has to worry about how to pay for health care. Though I put my faith in conventional medicine, your story and outlook has interested me. I lucked out, I suppose, in being stage IV with no progression in almost 9 years and little impact on myQOL. I appreciate your frankness and hope you find a way to alleviate your pain. Please take good care of yourself and I will think good thoughts for you.
May 22, 2020 06:28PM ElaineTherese wrote:
I am also sorry to hear about your setbacks but am happy to hear you've found a good landing place. And, yes, it's awesome that you are living so close to a nurse! I hope you find something for the pain and that you continue to find peace and love in your life.
May 22, 2020 08:20PM pipers_dream wrote:
Thank you exbrnxgrl and ElaineThere....I have already called hospice even though it’s still early because I don’t have much family and I want to make sure I’m going to have what I need and they said they can set me up with pain meds when I need them. Right now it’s manageable with Advil and some cannabis to make me happy lol so I’m thankful for that.
May 29, 2020 09:26AM exbrnxgrl wrote:
I hope you’ll drop by every now and then to let us know how you’re doing. Take good care
May 29, 2020 03:15PM toria1212 wrote:
I am so intrigued by your story, and I do hope that you soon find relief with the pain, healthcare issues, etc. I was diagnosed March 19 as COVID19 was just taking off here in Michigan. Soo....in some sick way, I was thankful to be distracted from my diagnosis anxiety trying to keep my family safe and well(my 30 year old son, laid off as an accountant, has been staying with us).
My diagnosis was more of a surprise, with no family history, but (stage 1, grade 1, 5mm, invasive ductal, lumpectomy 19 days ago, two negative lymph nodes). I am blessed! I was put on the anastrozole prior to surgery due to possible surgery delays from the virus.
I was with my MO yesterday. I was not oncotyped. She said recurrence rate of 9%, 6% IF I take anastrozole for five years. Then....she mentioned that TEN years is now being found more optimal. I have been chewing on this since I left her office-so instead of a 9 out of 100 chance of recurrence, I will have a 6 out of 100 recurrence, throw in the insomnia and weight gain I am already experiencing, and a myriad of other possible SE and health struggles. So I am truly considering a holistic approach to this, and to going off of the meds. I do not know yet, I do not know how to find a "holistic" oncologist(do they exist?) but I am really, really struggling with the notion that this pill can help me more than hurt me overall. My progesterone is so low it did not show, but estrogen is high, but I just read an article that discussed that progesterone increase WILL benefit the high ER response.
Thank you for sharing-I am so appreciate as I am going to compile information and ponder some things. I too have been one giant sweet tooth for most of my life-I've been blessed with mostly good heatlh in spite of it. The last couple of years shifted after I had a devastating illness after a winter flu shot.
Your candor and information is invaluable to fellow bc sisters.
I am so happy you have a precious grandchild to enjoy-my gdaughters live 5 minutes from me-I will spend much of my weekend with them.
Sending positive vibes and (((hugs)))
May 29, 2020 03:51PM - edited May 29, 2020 03:56PM by exbrnxgrl
I just wanted to say that family history i. e. a genetic mutation, is relatively rare. The vast,vast majority of those diagnosed with breast cancer have no known genetic connection. Piper's story is unique. I am sorry to hear of her progression but I admire her for forging her own path. Take care
PS: I was dx’ed with stage IV almost 9 years ago. I still work full time and lead a pretty normal life too
Jun 5, 2020 07:23PM pipers_dream wrote:
The latest update is that I’m going to working with a women’s clinic that will give me a more recent dx so I can qualify for Medicaid and if that doesn’t work then the clinic will put me on a sliding scale. My plan is to get a pet scan and get tested for the hep C and see whether there’s enough of me left to put me on the hep C meds...it may not be worth it if I’m too far gone, and today the pain was getting more intense...I don’t have pain every day but when I do, it’s getting worse and I suspect it’s in my bones. Fortunately Advil and cannabis works for now. I’m fine emotionally but scared of the pain that is coming. I’m really sorry if this is too raw for some folksright now.
Jun 5, 2020 09:20PM Cowgirl13 wrote:
pipers_dream, none of what you have said is too raw. You are honestly sharing your experience of where you are now. So good to hear that you have a place to land. Please check in and keep us posted. Bless you.
Jun 6, 2020 05:59AM ElaineTherese wrote:
Hope you qualify for Medicaid soon and continue to find the pain bearable with minimal meds. Nothing is too raw for this message board. Thinking of you!
Jun 6, 2020 06:57AM exbrnxgrl wrote:
Thanks for taking the time to update us. I won’t get on my soapbox about access to medical care in the US, but I hope Medicaid works out. I hope you can also get hooked up with a pain management plan for when you need it. Advil or Aleve And cannabis are my current go to meds as well. Take care
Jun 6, 2020 07:18AM pipers_dream wrote:
Yes exbrnxgirl, I won’t get on my soapbox about healthcare in the US either but I do know that it’s not good for my health to be this angry and stressed over it.
When I called hospice, they said they can get me pain meds when the pain gets too much for my usual go-tos and if I don’t manage to get Medicaid or Obamacare before I need hospice then they will do it for free. Since I have some money, I’ll make them a donation but they weren’t able to quote me a cash price.
Thank you all for your support. Sometimes I worry that I’ll be judged for choosing an alternative health plan but too late to change that now and I wouldn’t anyway. I appreciate you all who are meeting me where I am, rather than where I “should” be.
Jun 6, 2020 07:39AM exbrnxgrl wrote:
I truly hope no one judges you! You have always been honest about the path you chose without putting down those who chose a conventional path, as I did. You never made it about us vs. them. Thank you and take care
Jun 6, 2020 09:08AM ElaineTherese wrote:
What exbrnxgrl said. You've had the courage to live out your convictions, and you should be respected for that, not judged.
Jun 6, 2020 09:58AM pipers_dream wrote:
thanks ladies, I’m crying a little because of your support. Considering all that is going on, I’m in good spirits for the most part and I think much of that has to do with all the emotional work I did since I got my dx.
Jun 27, 2020 06:13PM pipers_dream wrote:
Reporting back and the news is not good. I got my MRI and pet scan results back and brain is clear but bones are so full of tumors that they can’t be counted. I don’t consider this failure...none of us ever should I don’t think, even though I didn’t stick to my program like I should have. I got sick of taking handfuls of pills and keto dieting and vitamin C IVs and just went out and did what I most wanted to do which was to see our beautiful country in my van, plus I got to go live in Chile for a few months where my daughter and grand baby live so life has been wonderful. I don’t regret anything at all.
I’m getting weaker and have some pain now but it’s not every day and it’s not a straight line progression like I would have assumed. I suspect that I’m about to start losing weight,as my appetite isn’t as hearty as it once was.
Jun 27, 2020 06:39PM DebAL wrote:
hi pipers dream, I'm so sorry you are going through this. I really admire how you are doing what is best for you and enjoying life on your terms. Take care ((hug))
Jun 27, 2020 11:00PM Cowgirl13 wrote:
pipers_dream, so good to hear from you. You are in my prayers.
Jun 28, 2020 05:22AM pipers_dream wrote:
thank you for your kind wishes Deb and Cowgirl! Getting so close to the end brings some really strange emotions. Yesterday I was choosing music for....and I was crying at some of the songs and then I began laughing on top of the tears and it felt so good to cut loose. I’ve always been a bit closed in my demeanor because my parents had the attitude that having emotions is the same as being crazy so I kept it on lockdown. Wow did that feel good to let it flow!