An Alternative approach to Stage IV Health and choices

Heidihill · January 2012

Much better for my aging eyes! Just had my PET/CT this morning and glad to report I'm still NED!

Heidihill · January 2012

I've started using coconut oil as a deodorant. It works!

Kaara · January 2012

Heidihill: Congrats on the NED! Peace of mind means a lot! I'll try the coconut oil, but isn't it oily to the touch and get on your clothes?

Heidihill · January 2012

It gets absorbed very quickly into the skin. Maybe you could use a cotton pad to apply it? I now have argan oil for my face, edelweiss oil for my ears (in a convenient spray solution) and coconut oil everywhere else.

lulubee · January 2012

Coconut oil for deodorant? Seriously? Is there nothing this stuff cannot do?

Just last night I read somewhere here on the boards of an oncologist telling patients to make vaginal suppositories with it and keep them in the freezer for daily use, to combat the intense dryness caused by treatment.

Now that our vaginas are all taken care of, it's on to the armpits, gals. Haha. Coconuts, who wouldathunkit.

I'm beginning to understand why Hawaiian and Polynesian women are usually depicted as slightly more than half-naked and smiling.

Cool

thats-life- · January 2012

fantastic news heidi )))

I agree coconut oil absorbs really quickly. Havent thought of using it as a deodorant, will do that. I wonder if it explains their beautiful skin and minimal visual ageing.

bestfriend05 · January 2012

Hello all, very glad to catch this thread and see women geniunly interested in alternative/complementary treatments as well..i was wondering if u gals could pls advice me, my mom is stage 4 with mets to brain, has had mastectomy, followed by rads to chest and brain, and now on letrozole..all this in a span of about three and half months now..

My inclination is to supplement this with some more natural/healing/immune boosting remedies..pls advise..

Kaara · January 2012

So very sorry about your mom. If she wants alternative or complementary treatments along with her other conventional meds, I would suggest seeing an integrative or naturopathic physician for advice. There can be interactions between the different drugs, vitamins and antioxidants and it should be monitored carefully. I was told no antioxidants with radiation for example. Some vitamin infusions (Meyer's cocktail) could help boost the immune system, and of course her diet should be mostly raw veggies and fruit, with juicing of raw greens and vegetables. This diet gives her the best chance of starving cancer cells. Carbs or anything sugary is not good.

I send your mom prayers and positive healing energy.

bestfriend05 · January 2012

Thank u kaara for your kind words and advice..

Yes mum has been having a lot of fruit and veggies, including raw turmeric juice in her daily intake of fresh fruit/veg juices ..Trying to find a good naturopath is a quite a challange..but am still trying..she is also doing breathing excercises..

Yes heard a lot about vitamin c infusion and am wondering if that is going to be beneficial in my mom's case..

Has anyone heard of ruta 6, its a homeopathic medicine, used in brain tumor patients and as with all complementary meds has mixed reviews..

Kaara · January 2012

All my test came back negative....even the circulating tumor blood test that was so important to see if there were any stray cancer cells floating around in my body. My naturopathic doc said if they were there they were so small that they couldn't be detected, and my diet and supplement program would keep them at bay.

It's been a long journey to get to this point...and after careful consideration I've decided not to go forward with my rads treatment because I couldn't get the short version (5 day) that I wanted. I will alternate with thermography and mammo every six months, keep up my diet, supplementation and exercise program, and hope for the best. My family supports me 100% on this endeavor.

Hopefully we can keep the alternate threads going...so many people have dropped out...but I do feel that I had a lot of support here, learned a lot, and hope that others could as well.

Sending everyone prayers and positive energy!

sweetbean · January 2012

bestfriend,

I am doing homeopathy - I think it includes ruta6. It's from this Indian homeopathic oncologist who comes to NYC a few times a year. Read the reviews, decided to do it.

bestfriend05 · January 2012

That is really good to know sweet bean, I have a few questions though if u don't mind,

When did u start taking ruta 6? How long have u been on it? Did u get in touch with the oncologist to start taking it? Do u take it as a preventative or to treat lesions in the brain? are u on any other meds? What about interactions an side effects?

Have u heard of Iscador, a homeopathic agen used in cancer patients?

Sorry about the thousand questions...

Hope to hear from u soon...xx

bestfriend05 · January 2012

That's really good to know kaara, keep going with the good work and keeping positive attitude, wishing u best of luck and hoping that u are always in the best of health for many many many many years to some...xx n hugs

Kaara · January 2012

bestfriend: I don't know anything about ruta 6 but Iscador is also called Misletoe and is an injectible that is used in cancer treatment. My naturopathic doctor told me it would be good to take if I had any circulating tumor cells in my body, but I tested negative. It's expensive and is ordered from Germany.

You can read about it in Suzanne Sommer's book Break Out, or google Iscador.

bestfriend05 · January 2012

Thanks kaara will defenaitly have a look at it.. Circulating tumour cells how do we test for that.

?

Kaara · January 2012

You can ask your MO to do the test, but they usually feel it is unreliable and according to some, they don't do them unless you have mets. My naturopathic doctor suggested it for me to see if my body had any cells circulating that were cancerous and I came up negative...zero. He said there could always be some microscopic cell activity that can't be detected in the tests, but those can be killed off by a healthy immune system.

Heidihill · January 2012

Kaara, great news!

Bestfriend, mistletoe is popular here in Europe. Insurance even pays for it in Switzerland, maybe also Germany. My onc says it works by inducing an allergic reaction.

bestfriend05 · January 2012

I see, I will ask them but u know what once are like, it's nit our standard procedure blah blah..but thanks anyways kaara I will defenaitly look it all the things u suggested..thanks again..

sweetbean · January 2012

bestfriend, I take the homeopathy as a preventive measure - no brain lesions. I saw the homeopathic oncologist when she came to NYC in May and then again in October to get more. There are no side effects. I've also done mistletoe for 2 months, but it was too expensive. I'm hoping to start it again when I finish Herceptin in May - hopefully, by that point I will be able to afford it. The only side effect from the mistletoe is a big welt on my thigh at the injection site.

thats-life- · January 2012

Hi all. I am very upset today. Two beautiful women lost to liver failure from chemotherapy. I know we dont know how long any of us would live if we didnt do the standard chemo train, but it still upsets me terribly..,,I saw my onc yesterday...I warned him that i will most likely refuse chemo (new onc, and head of the bc dept) he said 'we dont need that conversation yet'....I said i want him to be aware that once hormonals are gone through, i would like an alternative plan to ploughing through the various chemos, and that i would be willing to do a clinical trial of a vaccine, he said ' we have one going, but you wouldnt qualify as you need to have been on chemo and have a supressed immune system to do the vaccine trial'...it is the shingles vaccine. I said ' could you not consider me on compassionate grounds or something, and do it without chemo?' he said ' we dont need to have that that conversation yet'.....and round it goes...very frustrating.

Im wondering if i should get the shingles vaccine from my gp?..stimulate some new killer tcelll?...or maybe hep b (havent been vaccinated for that) or a TB booster?...i have read of people going into remission after a serious infection like TB....new killer t cells (which do recognise the cancer) are made and multiply rapidly. (Our present tcells have been hoodwinked by the cancer cells to be considered 'normal').The Australian fellow who's blog i follow, who has made alot of money and helped alot of people after surviving stage IV cancer, has been in the news lately. Two scientists are claiming that as he had TB while being treated for stage IV cancer, maybe the 'bony protrusions in his chest" were from TB, and not cancer. Im wondering if it was the TB that may have helped his cancer go into a remission...anyway, i am going to look into booster shots, safety of vaccines, and trials of vaccines. etc etc.

Onc said i am presenting as stable and well. (dont feel it) I see him again in 3 months, and have ct and bone scan lined up prior to the appt in april.

good news....my vitamin D levels have more than doubled, now 51...so that is good.

Interesting re mistletoe...if it induces an allergic reaction heidi...does that then stimulate new tcells...im wondering how an allergic reaction affects cancer cells?

Kaara · January 2012

thats-life: So good to hear from you! I'm sorry you're feeling down today. Hopefully tomorrow will be better. It's always frustrating when doctors don't seem to understand your needs. I've seen a lot of that lately on a personal level.

It sounds like you got some good news on the Vit D..51 is good. See if you can get it to 70. I was offered a shingles vaccine two years ago after I had a case of the shingles and I refused. Maybe I should go back to my PCP in NC and tell her I want it now. My naturopath suggested mistletoe, but said I don't need it right now because my circulating tumor cell test was negative. He really believes it works.

Today they announced a new cancer vaccine here in the USA. Is it the same one I wonder? I read the article and it said the vaccine works to boost the immune system to fight the cancer. Hello...all the supplements we take and diets we are on do that as well, but if you bundle it up in a vaccine and put the FDA approval on it, all of a sudden it becomes NEWS! I certainly hope it works and becomes available soon so that more lives can be saved from this terrible disease.

After trying to get a particular kind of radiation, a 5 day external beam that I thought was appropriate for my type of bc, the RO called and said she couldn't find any trace of the surgical site. She said it was as though the cancer never existed, and therefore she couldn't properly plan the partial rads. I took that as a good sign and opted out of rads altogether, so now I'm flying on my own. I might look into tamoxifen, but that's about it. I'll stick to my diet and supplements and hope for the best.

I keep you in my prayers and hope that you continue to remain stable until a good vaccine or something else comes along to give you permanent NED! Never give up!

Heidihill · January 2012

Good to hear from you again, thats-life. Was getting worried about you.

I have very bad hayfever which could last up to 6 months. The onc seems to think it could be saving my life. Still I want to get it under control because by the end I usually end up with asthma and I just read that while nasal allergies may prevent brain mets, asthma may encourage lung mets. So I may have to resort to steroids again. I have to read up again on t cells and allergies. I just recall reading that endurance exercise increases T2 helper cells which are the ones supposed to fight allergens, as opposed to T1 which fights viruses and bacteria. Maybe Zumba will help my hayfever!

Kaara · January 2012

Heidihill: That's interesting...the new cancer vaccine I referred to above targets and boosts the killer Tcells in the immune system to attack and kill the cancer cells without destroying the good cells. It is showing great promise and the one being developed in Israel might be released to the market in about three years. There are many of these vaccines being tested out there by many different labs around the world...too bad they couldn't collaborate and get this done sooner, but because our society is profit driven, they are all competing to see which one can hit the market first. One is supposed to provide a real breakthrough for triple negative bc which is difficult to treat. Interesting reading..the article about the vaccine being developed in Israel has a video attached to it that gives a great explanation of how the vaccine will work. Google cancer vaccine Israel and it will come up.

thats-life- · February 2012

thanks for the info you two...im ok, just a bit disheartened lately, as i think we all have been.

Heidi, that is VERY interesting information on your hayfever and what your onc said...please tell me more about how and why he/she said that. Where can i find the info on nasal allergies preventing brain mets?..and athsma and lung mets???....i am the hayfever queen, you have no idea LOL...so lets hope there is something in that. I did read recently that tamoxifen may prevent lung mets, or maybe it was lung cancer...its all very interesting. You know, i have often wondered why i had such a low inflammatory marker test result when first diagnosed, i remember discussing it briefly with you heidi on the oligo thread, it was extremely low, i think i thought that with such an allergic body, it would have had a higher number...maybe they are not connected. I have had athsma since i was 13, but all the sinus issues, sneezing, itching, rashes etc started about 8 years ago, and never went away. I have been on steroids etc, good for a reprieve, but long term not so much.....thanks kaara for the vaccine info..and the sympathy re oncs Undecided

Heidihill · February 2012

I can't seem to find the articles anymore. The reasoning sounded good to me, that nasal allergies keep the stuff running and out of your system. Whereas asthma coodies tends to sit in the lungs. I suppose when you get secondary infections in the sinuses this may not be so good.

As to why allergies help, he didn't say.

I am going to try putting coconut oil in my nostrils as a pollen barrier. Fortunately we still have freezing temps.

Heidihill · February 2012

http://www.ncbi.nlm.nih.gov/m/pubmed/18922934/

This is the study relating to asthma.

3littlegirls · February 2012

Have any of you guys heard of site specific immuno therapy? I will try and look it up but not sure. I am on my Blackberry.

My Nd is going to be participating in a clinical trial using it. I am hoping to be one of the participants. Hope your guys are doing ok. The boards have been so sad lately. It has to stop soon!

Love and hugs!

Kaara · February 2012

Here's some good news. My boyfriend's DS was diagnosed with small cell lung cancer last year...stage 4. She was told little or no hope. She went through about 5 chemo treatments vowing each time she would do no more.

Last week, she got her scans and the doc called her and said the cancer can't be found anywhere in her body..not even in the blood tests! He told her it was a miracle. She is overjoyed and so are we. I pray that this is a permanent remission for her. She will continue to have frequent testing.

Even when you think there is no hope....there is always hope. A combination of medicine and prayers worked.

Heidihill · February 2012

3littlegirls, sounds very interesting! Keep us in the loop, ok?

Kaara, what wonderful news! Hope you and the BF are celebrating like mad!

I wanted to post something on HDAC (histone deacetylase) inhibitors. I forget if I've posted on it before. It might have some relevance to site specific immune therapies. This is from the Linus Pauling Institute in Oregon.

http://oregonstate.edu/ua/ncs/archives/2010/apr/%E2%80%98epigenetic%E2%80%99-concepts-offer-new-approach-degenerative-disease

The good news - for cancer and perhaps many other health problems - is that "HDAC inhibitors" can stop this degenerative process, and some of them have already been identified in common foods. Examples include sulforaphane in broccoli, indole-3-carbinol in cruciferous vegetables, and organosulfur compounds in vegetables like garlic and onions. Butyrate, a compound produced in the intestine when dietary fiber is fermented, is an HDAC inhibitor, and it provides one possible explanation for why higher intake of dietary fiber might help prevent cancer.

"Metabolism seems to be a key factor, too, generating the active HDAC inhibitor at the site of action," Dashwood said. "In cancer cells, tumor suppressors such as p21 and p53 often become epigenetically silenced. HDAC inhibitors can help turn them on again, and trick the cancer cell into committing suicide via apoptosis.

___

The fermented dietary fiber advantage could very well explain the benefit from taking fermented wheat germ extract.

Kaara · February 2012

Heidhill: Good info....I'm eating a ton of broccoli and other cruciferous veggies, so hope it works. Also taking iodine and other supplements as well as infusions to prevent bc recurrence.

An Alternative approach to Stage IV Health and choices

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