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Naturopaths

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

A couple of recent posts have made me wonder.  How many of you are working with either integrative or naturopathic doctors in addition to or even instead of "conventional" doctors?  If you are working with them in a complementary capacity, do your conventional doctors know about it and what is their reaction?

I am now working with a board-certified naturopathic oncologist who specializes in complementary cancer care.  I did not make a connection with her until I was finishing up brachytherapy.  Since I am now NED, we are working to keep me that way.  At follow up, my medical oncologist was very interested when I told her I was working with a naturopathic oncologist and was curious about the supplements she was prescribing.  She was not disparaging at all, and actually was quite excited that I was pursuing this kind of "treatment" after being cut loose from chemo and radiation.

I was just curious about other women's experiences in this regard.

Chris

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2900
Joined: Mar 2013

Chris, I looked for one once and there was nothing local.  To find a board certified one?  Wow!  I had never heard of them before cancer, but I had never heard of a gynecologic oncologist before cancer either, but found it very intriguing from some of the other women.  Can you tell us, is this something that you are doing on your own or is insurance covering this?  I am curious if insurance companies are "open" to this as well.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I am a Kaiser member, so they are not covering the cost of the naturopath or the supplements.  The appointments are not outrageously expensive, but there is a cost.  Kaiser does have programs with discounted fees for third party acupuncturists, massage therapy and even chiropractors.  I don't know if most insurance companies cover naturopaths.  

In addition to about a dozen supplements, we work on my diet, exercise and other lifestyle enhancements, including meditation and imagery.  I am also doing mistletoe extract injections and taking low dose naltrexone.  I was impressed at the sort of "whole life" information my naturopath discussed with me on our first appointment, much more comprehensive than any health discussion I've had with any other doctor.

A listing of naturopathic doctors that specialize in cancer can be found here:  https://oncanp.org/find-nd/

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

My medical oncologist was not too keen on me working with an acupuncturist to help alleviate neuropathy but she has come around. I chose to go to a pain center at my local hospital. My acupuncturist is also an anesthesiologist but she doesn't specialize in cancer. I notice many cancer centers have cpnlementary medicine as part of their offerings. She and I are working together to figure this out. She's close to my home, is in a pain center at the local hospital so convenience was a factor.

As a registered dietitian nutritionist, I can research supplements but I would encourage all to consult an RDN specializing in cancer treatment. I decided to not take the l-glutamine because of controversy around that and I'm actually quite conservative about supplements.  I have made major dietary changes in that I no longer eat red meat and very little dairy and trying to eat more lentils, beans, vegetables, and fruit and limited refined sugar. I'll be more diligent once treatment is complete and my sense of taste returns. I have lost about 18 pounds but my weight seems to have stabilized at this point. I do take preventive measures for constipation and that seems to be working.  If there was a complementary oncologist at my cancer center, I would take advantage but I just can't handle any more outside appointments right now.  Maybe, like you, after treatment, I will seek someone out. 

I encourage all of you to consult a registered dietitian nutritionist who specializes in cancer prevention and treatment. Most times this is covered by your insurance or is offered at your treatment center. Do take advantage. 

I also do guided imagery every morning. I've found some great free resources online that have met my needs. I think this is very important to keep a positive attitude no matter what. 

I also am fortunate to have a very supportive family and support network. I have a CaringBridge website to which I post status each day and many provide encouragement to me via this website.  I find this very comforting. It's also therapeutic keeping a journal on the site. My faith has been renewed and I feel that that is also a comfort to me. 

These are the tools that are getting me through this ordeal. Some may also find these helpful. 

takingcontrol58
Posts: 263
Joined: Jan 2016

Editgirl,

When my EC metastasized two months after my total hysterectomy, my gynecological oncologist
recommended I see an integrative oncologist.  Current cancer treatments  have not been successful
for metastatic endometrial cancer so she knew I needed to do more than the standard treatment.

My integrative oncologist had a PHd in molecular biology and was one of the smartest
people I know.  He put me on metformin and on 44 supplements- I still take all of them today
and have been NED for nearly one year after being told by Memorial Sloan Kettering I had 4-6 months to live.

My oncologist at Memorial Sloan seemed offended when I told her I was seeing an integrative oncologist
and denigrated my doctor.  She called him unethical for putting me on metformin when I am insulin resistant.
As you can see my integrative oncologist addressed one of the major risk factors for endometrial cancer, insulin resistance.
The chemo nurses at Sloan told me they were not allowed to talk about supplements.

I personally believe it is essential to get involved with a naturopath or integrative oncologist along with your
gynecological oncologist if you have advanced cancer.  Current cancer treatments do not address why you
got cancer in the first place.  And if you don't address the cause of the growth, you can continue to get
recurrences, since your body still has an environment that allows cancer to thrive.  Only an integrative oncologist
or naturopath will address you as an "entire person."  You need to be treated as a person, not a tumor.

Here is a great quote that I think describes what is wrong with the current cancer treatment industry.
It is from Albert Einstein.

"Intellectuals solve problems.  Geniuses prevent them."

Naturopaths and integrative oncologists help to prevent you from getting cancer by working to get your
body back in balance and functioning properly. The body knows how to kill cancer cells if it is working
properly.

Takingcontrol58

wendybru's picture
wendybru
Posts: 11
Joined: Jul 2016

Takingcontrol58

Do you mean to say chemo is not effective against metastatic EC?  Many on this forum take treatment for exactly that, and appear to survive.  Anthing past stage I is metastatic, isn't it?  The internet is full of stories of those who survived it via diet alone.  One website is chrisbeatcancer.org or com, I forget.  Another link, https://www.youtube.com/watch?v=dMoVVl7Y_ss, tells the story of a stage IV survivor who used diet and the mind body connection.  The question is, can we believe them?  Artemisinin is an herbal extract with cancer fighting promise. I am stage III, considering chemo, but scared.  If it does not improve outcomes, I would like to know.  My onc says it will "cure" me. For now, I am cleaning up my diet, etc., and debating chemo or not.  Thanks to all of you for sharing!    Wendy

MAbound
Posts: 1149
Joined: Jun 2016

If I have learned anything on this site, it is that with this cancer we are all unique in what we are dealing with and undergoing. One size does not fit all. You are going to read posts from some who are almost evangelical about what they've done or are doing, some who'll be complete opposites in their opinions and some who see benefits in being open to what both western and alternative medicine has to offer.  It's a learning process to come to make your own decisions about who to trust and what to do. That's as it should be because you're the one who has to live with your decisions. This is a place where you can learn and share with others and find support and caring as you embark on this journey you didn't choose. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1794
Joined: Jun 2015

Wendy, welcome! Sorry you had to join us and glad you found us....

I'm not going to lie, chemo is not an easy treatment to get through. However, it is doable. Being scared is part of the process. I can tell you that it is not as bad as the fear we all face with that first treatment. You will find that you are strong and will amaze yourself from start to finish. (And you will see many ladies here state that very thing over and over.)  While I recognize this is a personal decision that each of us has to make, I ask that you please not believe all of the magic formulas you may see on the internet.

If you want some insight into the different impacts chemo has, please go to a thread on the board titled 'Ladies Going Through Chemo...'   Several ladies documented their journies starting about mid-July year through current. It may help you.

Please come back with any and all questions.

Love and Hugs,

Cindi

 

janaes
Posts: 800
Joined: May 2016

Wendy i just wanted to share how hard it was for me to make the desision to do chemotheropy.  Ive curently done two chemo treatments so far.  I had chemotheropy 23 years ago and when i heard i had cancer again chemo was the last thing i wanted to do.  It took the doctors quite a while to get on the same page. In fact i decided to to chemo before they were on the same page.  It was very frustating that i had to make the desion with out all of them agreeing. I decided to do it mostly because i finally found out what the 3 patholigists thought. They incouraged chemo.  Any ways doing chemo is a tough dession and its okay to want to feel good about it.  Yes it can be scary like cindy said. It was for me but i felt in my heart i needed  to it.  For me this last chemo treatment was emotionally hard on me but i still know its right.  Hopefully I can get back to were i want to be. May god be with you as you decide.  Janae

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

I have no access to any board certified integrative doctors in this area.  I talked to my doctor's PA yesterday about using massage and acupuncture to treat my neuropathy.  She cautioned about my tendency to get infections and said to make sure it was it was a reputable practioneer.  That does make me nervous and so, for now, will stick with the massage therapist.  I also hope I can get off the magnesium supplement I've had to take since it may be the cause of my persistent diarrhea.  

Each person has to decide for themselves what's right for them.

Love,

Eldr

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

medicare will not cover naturopaths unless they have a medical degree. I searched and there were none in my area that were naturopath oncologists. Do they have a medical degree? I amnot getting any positive reinforcement about supplements from my onco.

MAbound
Posts: 1149
Joined: Jun 2016

Editgrl for starting this thread!  My gyn oncologist is also very open to complimentary care and I'm really looking into what I can do to up my odds of staying NED after I'm done with with chemo and taking progesterone. Clearly my prior habits contributed to getting EC in addition to having both early onset of menstruation and late menopause as risk factors I wasn't aware of prior to diagnosis and I need to make some changes. I hope to educate myself from various sources to help ask the right questions and intend to see if I can find a board certified naturopathic oncologist like you have. Don't know what's available in my area yet.

Eldri...I always love reading your posts! You have such a positve attitude and spirit after having been through so much. You are inspiring!  Have you tried using hypothermia slippers for your neuropathy pain? I developed intense neuropathy after my 1st treatment from Taxol and got them in time for my 2nd treatment when I was switched to Taxotere and started on B12 shots, Metformin for untreated pre-diabetes, and glutamine supplements in hopes of preventing things from getting worse. My pain abated 4 days after the B12 shots and 2 days before starting the Taxotere, but reintensified to a lesser degree 48 hours after that second cycle. I wear the slippers and mittens during chemo, but also find them very helpful to fall asleep at night when the burning pain seems to intensify and keep me awake. The cold feels really good, which is odd when my feet and legs feel cold, but I suspect what's happening is that they calm over-excited, damaged nerves.

I had my 3rd chemo yesterday and no re-intensification of neuropathy issues so far, so I'm crossing my fingers that what's been done so far is really helping. Amazon sells the slippers, mittens, and ice caps for saving hair for about $100/pair or cap. Gouging price, I know, but cheaper than taking long-term meds with their own scary side-effects. Hope this can help you. 

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

I never thought about putting cold on my foot at night to help with the burning and pain.  Our son has this cooling thing he used on his pitching shoulder and I think it's still in the freezer.  It kind of feels like it's made of jelly and has Velcro on it.  I bet I could wrap it around my foot when I go to sleep - sure wouldn't hurt to try!!!

Thats why I love this place - somebody always has an idea to try!!!

Love,

Eldri

MAbound
Posts: 1149
Joined: Jun 2016

The instructions that came with the slippers I use want you to wear something like a surgical bootie over your feet while wearing them and come with a pair when you buy them. It's for sanitary purposes because you can't really wash the slippers, but it also helps to give some protection to your skin without being too thick to do what it's supposed to do during a chemo treatment. I do wear socks instead when using them outside of a chemo treatment and it still helps. Just don't wear too thick of a pair. Some people complain that the slippers are too painfully cold when you first put them on, but if they can get through the first 10 minutes or so it subsides. I've found that to happen only when we're keeping them cold with dry ice in a cooler on chemo days. Dry ice is a lot colder than what our chest freezer runs at. Just some more information for you in case it's needed. Good luck. I soooo get that the burning pain is more the problem than just the numbness and tingling they warn you about before you start treatment!  It's awful. Hugs and good wishes for you!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

My oncologist was also leery of acupunture for neuropathy,  but she has come around.  The info about infections is just out of date.  Today they use disposable needles with very little risk for infection.  What's most important is to choose a good practitioner.  You may find this helpful.  I have found that the acupucture is helping with my neuropathy.  Here's some info you might find helpful.  As the previous posts indicate, we need to take our health into our own hands.  Our docs are not always as informed as we would like them to be on some of these issues. 

https://nccih.nih.gov/health/acupuncture/introduction

 

Tethys41's picture
Tethys41
Posts: 1374
Joined: Sep 2010

I started working with a naturopath as soon after my surgery as I could get an appointment.  I actually tried to get one before my surgery, but fate did not support my plan.  I incorporated dozens of supplements and integrative therapies during and after treatment.  I naively tried to share what I was doing with my oncologists, but finally realized I was better off keeping them out of the loop.

The first gyn/onc told me not to take any supplements, and that he had seen a liver, during surgery, which was destroyed by them.  I did not tell him when I went to Mexico for integrative treatments between chemos.  I was afraid he would refuse to further treat me. 

My medical oncologist told me I should not do IV vitamin C because it would repair the damage to the cancer cells from the chemo.  She quoted flawed research, which was performed at a cancer hospital and was aimed at discrediting Linus Pauling’s research with IVC.  The study used oral vitamin C, rather than the high dose IVC used by Pauling.  When I told my doctor that I still intended to use the IVC, she gave me a time out and left me sitting in the examination room for 30 minutes before returning.  That was over six years ago and we have not talked about it since, although I still see her once a year.

My second gyn/onc, who I switched to because he was closer than the one who performed my debulking surgery, but was still 4 hours away, was a very jovial man when I first met him.  I listed all of the supplements and treatments I was receiving, as his intake paperwork directed.  After seeing him for about a year, he told me he didn't care what I did when in remission but that if I recurred, he would not allow me to use any integrative treatments.  I saw this man for my 6-month follow up appointments for over 3 years and after his statement about integrative treatments, with each visit he became ruder and ruder with me.  When I requested that I be transferred to his colleague, who worked in his office, he fired me and referred me to another practice.  About a year later, I received a letter from his practice stating that he was no longer with the group and they had no forwarding information for him.  I suspect he was suffering from dementia, but I don't know

I haven't had any conversations with my current gyn/onc about integrative treatments.  She is very conventional and my past experience has taught me that there is nothing to be gained by embarking down that path.  The closest specialists to me are 4 hours away, and I don’t feel I can risk losing this one, since I don’t know how far I would have to drive to see someone else.   I will not have any of these discussions with her even if I find myself back in treatment. 

I do know women who have much more open minded oncologists and gynecologic/oncologists on their team.  Some have even contacted my naturopath to find out what she is doing when they see the results their patients are experiencing.   But so far, I haven’t found one that open minded in my neck of the woods.

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I go to a regular oncologist and a Gyn-Onc.  My regular Onc. Recomended accupuncture, but the location and time made that impossible.  He is also ok with any/ most supplements, although he doesn't have a lot of hope is some of them. He is a pretty special Doctor.  Lou Ann 

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Hello Chris, as you know I, too, am working with a MD/holistic doctor and dietician. I ordered and was gifted many books on cancer curing diets. There are many, but most have the same basic items that are acceptable, with variations in the grains and a few other things. I, too, am administering mistletoe injections, three times a week- started Friday of last week. I also have to drink a berry, mushroom smoothie every morning, which contains various tinctures and powders.

Sadly, insurance does not cover the expenses of the supplements or appointments. The doctor appointments are reasonable, as this particular office offers a co-op type of insurance for those interested. You pay a one-time consultation fee (by phone or in person) and then a reasonable monthly fee thereafter. By paying this monthly fee, you have access to the doctor by phone, e-mail, or in person at no additional charge.

It gives me a peace of mind, that I am doing everything possible to remain NED. I wanted to ditch my brachytherapy, due to this other treatment, but decided to go for it alongside the alternative treatment. I had my first radiation today. So far, I feel fine. I had a little bit of cramps immediately afterward in my lower back and vaginal area, but that could be because nothing has been up there for a month and a half. Lol!

After this kind of diagnosis, you quickly learn to take it one day at a time, as we're not guaranteed tomorrow. Yet, we don't give up on hopes for tomorrow either. I am looking forward to climbing up on my big boys back and riding again. It has been much too long since I've been in the saddle. I had shoulder surgery in February; prior to finding out I had uterine cancer. I was still recovering from that, when I underwent the hysterectomy. My sweet guy probably thinks I have abandoned him. Someday, I will look forward to riding with you. Camanche here we come!!!  Love and hugs to you, sweet girl.

Red Dahlia
Posts: 16
Joined: Apr 2016

Hi All, 

i have not found a naturopath but did have a consult  from my oncologist to see  an Integrative Doctor.  I was constantly asking them questions about herbs and supplements, so they finally asked if I wanted this consult.  He told me what he thought I should do once I was finished with chemo.  His recommendations were:

1 curcumin 725 per day.  Said should be a brand that has BCM-95, or body wouldn't absorb correctly, two cups of green tea, exercise daily, some type of mind-body daily(guided imagery, bio feedback, yoga etc.). Follow a MIND diet which is basically Mediterranean with added berries daily, try to eat as much organic as possible, probiotics.  I also had been taking vitamin D and liposomal vitamin C throughout all of my treatment And he said to continue.  He wasn't big on me taking herbs because he said  they react differently in everybody and at this point he didn't think they were warranted.  

Accupuncture has worked very well for me.   I started after my second chemo. and it made a huge difference in my taxol bone pain, constipation issues as well as overall stamina and well being.  A few times I started getting what I think was neuropathy tingling and it would go away after acupuncture.  I was done with all treatment April 29 and  don't have any neuropathy.

i watched some of the series The Truth About Cancer and wish I hadn't because this confused me more.  One segment said that glutamates were a bigger cancer feeder than sugar.  When the guy was asked what food had glutamates that should be avoided, he said bLack beans.  I eat lots of legumes, so I quit eating for now....  

I do think all of their points prove that nothing works for everybody.  All of their conflicting viewpoints came from research that cured some. 

I also want to thank everyone for all of the wonderful information I have received from reading this board.  It helped me through my treatment.

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

"I do think all of their points prove that nothing works for everybody.  All of their conflicting viewpoints came from research that cured some."

And this is the tricky part about cancer.  As someone on this board said once, cancer is a different disease for each one of us.  Our bodies are so individual that it is not surprising that our own cancer is every bit as unique as our own bodies.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1794
Joined: Jun 2015

Thank you Red Dahlia for the information. So happy to hear you didn't have to deal with neuropathy.

Love and Hugs,

Cindi

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

I have posted several times about using a naturopath.  I was diagnosed Stage IV UPSC and had surgery, chemo, and brachytherapy.  But the cancer came back before my hair!  The second round of "conventional" therapy (DOXIL) damn near killed me.  After that I went to a Board Certified Naturopathic oncologist and have been working with both her and my conventional oncologist ever since.  Some days I feel like I am getting up and saving my own life one day at a time, but I have never looked back.  My ND has me on supplements, mistletoe injections, and low dose naltrexone as well.  I have been doing the mistletoe injections and the supplements for the whole year I have been on Avastin and we could almost track the improvement of my CT scans to the increase in misetletoe dosage over the course of the year.  Now the Avastin is causing HBP and so if my scan on Aug. 2nd comes back good, my oncologist wants me to quit Avastin and take a break from conventional treatment.  I am with Kaiser and while they don't cover naturopathy, they have kept an open mind and I have had no problems working with both. 

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