Holistic tx only--what Ive done
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Ahhh...the impending distance makes the heart grow fonder!...
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Ahhh...the impending distnce makes the heart grow fonder!...
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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!
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I appreciate this post!
As a practitioner of holistic medicine and leading what I thought was a healthy and spiritual lifestyle, I was dumbstruck and in shock when I got my stage 4 de novo bc with mets to my bones diagnosis.
I can’t speak to the experience of choosing to not get treatment, as I am in treatment and have been told I will be for life.
However, I am using the medicines of herbs and supplements to help me through and hopefully keep me strong.
I always have felt a strong healthy fear around chemo (I’m a vomit-phobe) and I know how intense it can be for some people. Others seem to do quite well with it! I am scared of the when the day comes that my MO tells me it is time for chemo. What I have heard is, at this point, it actually makes a stage IV person feel better, because the cancer makes us feel sicker. And that at this stage, they do much more gentle chemo infusions, than the ones they would use aggressively at stages 1-3.
I believe how well we do has a lot do with mostly aggressiveness of the cancers as well as our immune systems, outside support, financials, socio-economic factors and ability to access care, psychology, diet and lifestyle, and other factors.
I always told myself: if I get cancer, I would have the surgery to remove the cancer but skip the chemo.
Now that I have this diagnosis, the world has flipped upside down.
Everyday I wake up and wonder where I would be if I didn’t start treatments over a year ago. The good news is: I am functionally fairly normally - I have my own beautiful busy clinical practice, great friends and family, and have upped the self-care to the highest degree. The not great news is: I feel like my body is taking a toll from the meds. My joints and bones ache and I am easily fatigued. My friends and I went on a hike. Normally 7 miles would be intense but not impossible. Well, this time, the last mile I was so physically fatigued and then I was absolutely physically and emotionally drained for several days after that hike.
I don’t have the answers but I do salute the folks on here who are trying other ways. It is incredibly brave. We are all being the experiment and have our own journies and egos that guide us. We are all the trailblazers for those who follow in our footsteps. Hopefully, we will have wisdom from our experiences to help guide others
Wishing us all the best in sickness and in health! I REALLY understand the struggle! And I really get why a person would choose not to get treatments.
Please keep us all posted of your journies!
Brenda ❤️0 -
Brenda - lovely post.
I do not have the answers either. I have gone through many of the bios on this board. I cannot say there is an absolute correlation between grade of cancer and initial diagnosis nor reoccurrence. It appears nearly all had chemo, or radiation and targeted hormone treatment and still reoccurrence either fairly soon or some time much later. I had DCIS in my left breast over 20 years ago. This year dx with DCIS and IDC in right breast.
I was given a big book to take home and read after surgery from the cancer hospital. In that book, it was stated that a 1 cm tumor on average was around 10 years old. I mentioned that to my doctor that laughed at such a notion. He said my cancer was just a few months old. My tumors were 2 cm approx. I asked if I should consider having my other breast removed. Nope, didn’t think that would matter.
There is no right answer since apparently everybody is different. My issue is being guilted or scared into making a decision I feel horrible about. I had 3 appointments with my oncologist as he was trying to get me to be aggressive with my cancer. I am not mad with him. That is his approach. He is fully committed to the current protocols. If I conceded my belief system, believing he knows better, and it fails me, I will then be furious. If I make the decisions and it fails, I accept that fate. I will not be mad.
Changing my diet and lifestyle has been dramatic for me. It has been effortless. I accept that my cancer is driven by estrogen that is fed by fat which accumulates because of sugar and carbs. It is true I have said NO to many foods I once loved. It is permanent. I wish I had known long ago how detrimental sugar is for ME. I have had headaches my entire life. At least 2 bouts a day. Yes, I just got use to them. My joints hurt all the time. I have a L5 disk that is crap. I have been careful about certain movements. Again, I adjusted. I have not had any back aches since eliminating sugar. Clearly, my body was dealing with inflammation that is associated with bc.
Every week I go to PT. I need it and love it. It is at the cancer center. It breaks my heart to see so many men and women struggling with their cancer and the medical,side effects of those cancer drugs. I say nothing. Bless them. What amazing people being so brave.0 -
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?
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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.
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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
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pipers_dream-Are you still camping and hiking?
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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.
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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
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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.
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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.
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pipersdream,
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.
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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.
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I hope you’ll drop by every now and then to let us know how you’re doing. Take good care
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pipers_dream
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)))
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hi toria,
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
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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.
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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.
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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!
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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
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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.
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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
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What exbrnxgrl said. You've had the courage to live out your convictions, and you should be respected for that, not judged.
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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.
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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.
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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))
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pipers_dream, so good to hear from you. You are in my prayers.
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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!
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