An Alternative approach to Stage IV Health and choices
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That sucks about the MRI, thats-life! Hope it's nothing but lack of estrogen. But it's good that you already have a plan, just in case. Maybe they can give you something to relax you before the MRI. My sister falls asleep in those things. I don't know how she does it.
Eve, good luck on the Herceptin!
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Heidi, thanks...I have been meaning to ask you...I read something you posted in the ? thread on the stage IV forum..it was an incredible description of your fatigue prior to dx...just then i read your post in the stress thread..you are really an amazing person, dealing with life as you have
...I am getting curiouser and curioser (lol)...about your story...what was it like at dx?..how much chemo did you do? how did you get back from that level of fatigue? when did you find out you had NED?...do you attribute it to the chemo? tell me more about your fasting and how you think its helping..bottom line...can you tell me your story?..and make it long please:)
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Good morning ladies.
I have now done the last chemo available to me. Halavan worked great shrank my tumors quickly dissolved my skin mets for (like some of the others) for about 6 weeks. Then my cancer over rode it again and it's fast tumors back, pain skin mets starting to spread again I get rescanned tomorrow. I am looking for a miracle. I can proudly say I have done them all. My onc says there is nothing more they can do. I have decided to live much longer than my onc thinks which is a few weeks to maybe a couple of months. I can and will be doing whatever I can. Have any of you heard anything about the New Hope hospital in Sonora Mexico? Someone else was telling me about the Ayurveda Institute in Albuquerque, NM. Thanks for any info you might want to share.
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I have an app't to see my bs on Monday to get the final results and particulars on my bc. The really good news is that I had an app't with my private physician that prescribed my bioidentical hormones last year. I had all of my blood work and saliva testing done and the results were terrific. My Vitamin D-3 levels went from 27 to 57, and all of my hormones were in what he called the "gentle" range, meaning that they are well balanced and none of them are dominant. My thyroid is also in balance for the first time in years. My CRP levels were way down, meaning I don't have a lot of inflammation in my body.
He suggested that I go off the hormone replacements at least until after I have my surgery and get a clear report. I thought this was reasonable, and so I agreed to do it. Once my surgery is complete and I've decided on treatment, we will talk about the benefit of balanced hormones in my body vs unbalanced or none at all.
I left armed with all my reports to show my bs. It will be interesting to see if this matters to him. I selected him because he is an excellent breast surgeon, and I want to make sure I get the clear margins I need. I haven't selected an oncologist yet, but would like to have one that supports integrative medicine.
My take on "chemo brain" is that it is real...I have witnessed it first hand with extremely intelligent friends who couldn't remember from one day to the next and were not that way before having chemo. It was scary!
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laurajane, I will keep you in my prayers and pray,too, that you get the miracle you are hoping for. May God bless.
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Laurajane, your strength, courage and determination are really inspiring. Please take a look at the "Why I'm Not Doing Chemo" topic, you might find some answers there. Please keep in touch with us as we would like to accompany you on your quest.
ThatsLife, thank you for this thread and for sharing your inner thoughts with us
Hugs to my BC sisters
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Laurajane, I'm sorry to hear that your doctors have exhausted their therapies but I'm so glad to see that you are still willing to fight this! It's amazing how far our spirits can carry us. Miracles happen everyday. We just have to believe! Attitude is everything. I have heard many, many stories of stage IV survivors.
My cancer has advanced to my lymph nodes. I am currently getting treatment at an alternative facility in Tulsa Ok. I chose this therapy because I had done the most research on its therapies. I have only been getting treatment for a very short time. Its a daily infusion and I just took my 12th. I will be doing 40 total and then getting another PET scan on December to see my progress. It consists of a carrier called DMSO which makes cells permeable, allowing the therapy to enter. It's administered along with high dose vitC and laetrile (B17). The B17, once inside the cancer cell releases cyanide that kills the cancer cell but does not harm normal cells. There was a man at the clinic, when I got there, who had prostate cancer. He arrived at the clinic in a wheel chair and was on dialysis. He left 4 days after I arrived to complete his therapy at home. He was walking and no longer on dialysis when he left the clinic. I got a call from another man who was one of the first patients to be treated there 13 years ago. He was 67 at the time and had non-hodgkins lymphoma. He was treated and remains free of N-HL to date. Two years after his lymphoma, he got prostate cancer. Again, he was treated there. He is 80 years old today and cancer free! He has made it his mission to call anyone who is dealing with cancer and to share his story. PM me if you want further information. I will be glad to share anything with you that I can. See the link:
http://www.camelotcancercare.com/
An Oasis of Healingin Mesa, AZ is another facility that has a good reputation. Another member here is currently there. She doesn't come to these boards anymore because she is busy maintaining her own blog. Please see this link and watch Dr. Lodi's video.
http://www.anoasisofhealing.com/
She is stage IV and is having success there. Her tumor markers have been cut in half in a very short time. I will see if I can get in touch with her to see if she minds if I give you her blog info etc.
Another is Oasis of Hopein Tijuana, Mx. (not the be confused with the one above). I have heard many, many good things about this one. Dr Ernesto Contreras started the clinic in the 1960's. His son Dr Franciso Contreras continues it today. He is one of the "top dogs" in the alternative circles. I have heard it is a spa-like setting which can be great for healing. Here is the link to this one:
http://www.oasisofhope.com/patient_testimonials.php
Some people are anxious about Mexico. We vacation in there every year though further south. It's a beautiful place with good people. Please click around and check it out. Listen to some of the survival stories.
I wish you luck in your search. I hope this help you in some way.
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impositive,
How much does this treatment cost? Sounds intriguing!
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Hi laurajane...im glad you are here too. Its very confronting when our doctors tell us they cant cure our disease. I had a hard time coming to terms with that for a while. But i got there....one of the very important resources i found that helped me accept my disease, was a book by Ian Gawler called 'You can conquer Cancer'...From reading that book, i realised, as i have said earlier on this thread, that one can conquer cancer, whether we can control our cancer, or not, by doing our best while we are alive, and aim for a calm and centered death if our cancer cannot be controlled...it gave me a goal...and I saw that yes, we can be defeated by 'dying' in spirit before our body dies....He had stage IV cancer, with bone metastasis protruding out of his chest. He was given a few weeks to live, when he met Ainsley Meares, a psychologist..who taught him a simple meditation that he practiced 5 hours a day...he had a little chemo prior to progression, and had had his leg removed because of his primary tumour..but when he was given a short time to live by the docs...he embraced all he could...and he survived..
This is his website http://iangawler.com/
this is his blog: http://www.gawlerblog.com/ ...I know the women here will help with their information on treatment centers in the US and their wonderful information...but from far away here in Australia...I can only give you my support, and the philosophy of cancer that gave me peace...(and hope!) I hope that you get to a treatment center that can help you rebuild....meanwhile, we are here, ask as many questions as you need to.
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what about the block center girls? are there any options there if standard treatments have been exhausted? http://www.blockmd.com/testimonials_karyn.htm
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Laurajane, I'm sorry to hear your doctors are up against the wall. Would you be open to a second opinion? In any case I think trying to support your immune system with alternative medicine is a great idea.
Kaara, I think you're on the right track. Re: chemo brain. I wouldn't be surprised if cancer itself affects our brains, even without mets in the brain. It's the supply and demand for glucose, I'll bet. So the more blood you get flowing in the brain, probably the more food the brain gets relative to the cancer cells. Headstands, anyone?
Thats-life, thanks for the flattery. I'm just living day-to-day and maybe have had more experience than others in coping with (chronic) disease. The fatigue was a problem. But maybe more from lack of sleep as the pain prevented me from getting a good nights sleep for months already. I was about to buy a new mattress when I got the diagnosis. I did 6 rounds of triple agent chemo (TAC! Lol) with Zometa. I was NED somewhere around the fifth round. Yes, I attribute him to chemo since that's all I had done at that point. I could feel my tumor shrinking and immediately told my onc when I could no longer feel anything. I took a lot of naps but only after my daily walk. Rads was actually worse than chemo in the fatigue dept., coming after chemo and surgery. It may sound counterintuitive, but I added 1 hour of "arm dancing" with my favorite music to my walking routine. The music gave me an energy boost. The dancing relieved the tightness and probably helped with wound healing. I would say it took a year until I no longer needed my naps, but I still went to bed much earlier than before BC for a while longer.
I'm not as strict with the fasting now after a year. I do it when I feel like (17 hours a day without food). It's probably best to keep cancer guessing, now that it's probaby adapted to that schedule, if it isn't hibernating or, hopefully, extinct.
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Morning everyone! Good posts....great information. I had some good news yesterday when I went to my bioidentical hormone physician. He took me off my hormone replacement therapy for the time being until my surgery and treatment is completed, but my Vitamin D-3 levels which were very low at my last visit 6 months ago have gone from 27 to 57. I would like to be at least 75, so I'm moving in the right direction. Take those supplements...they work!
I feel the juicing and gluten free diet is helping me get my body into optimal condition. I've lost about 10 lbs now, more than I wanted to, but my DS tells me that when your body is detoxing from acidity, the fat cells that have been created to store the excess acid begin to break down and are flushed out of your system, which causes your weight to drop. He told me not to worry about it as long as I'm eating healthy. I'm feeling great.
See my BS on Monday to get final details about my receptors, etc. I will ask him about mammosite radiation, which is the only kind I would consider, and sentinel node biopsy only. Chemo will not be an option for me. I'm over 70, so the treatments are different than with younger women, and I have studies to back that up....conventional studies for a conventional doctor, so he will listen. I am hoping and praying for the best...but don't know if I'll know anything for sure until after surgery.
Happy Friday everyone!
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Heidihill, I am not stage IV yet....you ladies impress me so much
I would be very grateful if you shared your protocol.
Have a nice weekend everyone
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Laurajane, it might be worth doing a biopsy again, if possible. There's always a chance that your cancer has turned her2 +. Or do a circulating tumor cell test to find out the pathology of those cells. It would be good to know if you could benefit from Herceptin. Check out www.tnbcfoundation.org for clinical trials to match your needs, if you're interested in joining one.
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Sweatbean, Not sure which facility you were referring to. They are all expensive when paying out-of-pocket, unfortunately. Most insurance companies will pay a portion of the cost though. For example, my treatment cost $13000. I will get reimbursed by my insurance for my picc line and some of the other standard procedures. The treatments administered were "off-label" so they wont pay for those. I am not sure how much I will get back in the end. I have chosen to do 20 more rounds before I go for my next PET scan. That will cost about a quarter of the orginal price because all the up front procedures etc have already been taken care of. I have a $10,000 insurance deductible. No matter what route I chose, alternative or conventional, it would have cost me $10,000 this year then $10,000 next year since my treatment would carry over. $13,000 was a no-brainer for me. I would have gone this route no matter what but that helped me to rationalize the spending, lol.
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I just watched this via chickenpant's youtube link (catching cancer on active topics) ...very very interesting and thought provoking doco on the cluster of women who worked for the ABC in Australia, who were all dxd with Breast Cancer..(it even mentions the tasmanian devils i spoke about earlier on this thread!).....you can watch the whole doco on youtube...facinating...It makes me understand more of our desire to help our immune systems...
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That's a very interesting documentary. It troubles me that they put so much merit in the vaccine for HPV though, as so many girls have alledgedly died or been harmed by it.
I have read the Final Report of the Independent Review and Scientific Investigation Panel on The Breast Cancer at the ABC Toowong Queensland. It stated they tested for "known" or "suspected" environmental factors that are carcinogenic such as ionizing radiation, EMFs or RF's, asbestos, water, radon, tobacco smoke, etc... and nothing unusual was found. It did say "Contact was made with Mr Bruce Clayton of Haden, the air-conditioning contractors for the Toowong site. He said that the condensate trays were cleaned infrequently with a common, soap-based detergent to remove slime. The ductwork is vacuumed on an infrequent basis. The filters are not cleaned but replaced about once a year. The heat exchangers are cleaned infrequently with a chemical named Coil and Filter"....
Sounds like they did not check for mold in this building. I wonder if they did, wonder what they would find...
The report also mentions this "cluster study".
"Heath and Hasterlick reported an early formal epidemiological investigation of a cancer cluster. Eight children were diagnosed with leukaemia in Niles, a suburb of Chicago, from 1957 to 1960. All lived in the same residential neighbourhood and seven attended, or had older siblings who attended, a single parochial school. The authors concluded: "Although the exact cause of these cases was not identified, their association with one particular school, the time pattern of their occurrence and the parallel occurrence of a "rheumatic like" illness suggest an etiologic relationship to infection."
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thatslife, enjoyed watching the utube, catching cancer. It came to mind, like impositive said, perhaps it was mold related...perhaps the building had a mold problem.
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Thanks for the link! I got to the end but I maybe missed an important part: did they or did they not check for viruses on the ABC women? It seems they only checked for environmental factors.
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Impositive- thank you for all of your information. I think the Camelot sounds very intriguing.
Thatslife- I'll check out that book. I've had several people suggest Dr. Block also. They just did a skin biopsy last week I get the results next week. Funny, but an onc I saw last august suggested I have one done but my onc at that time thought it was unnecessary. I'm curious as to what the results will be.
Heidihill- I was told that the only clinical trials available for me would be a phase1 and probably had less than a 10percent chance of helping me. I would basically be a guinea pig.
I'm seriously considering seeing a Chinese herbalist I was referred to in china town, New York. I think this will be my first step. I've started my diet changes actually several weeks ago but have not been following it as much this week. It doesn't really make sense other than I was feeling so down for a while after seeing my onc. I'm back in charge again and feeling so happy to be here today! It may be cloudy outside but the sun is shining in my heart. Life is great. I hope you all have a wonderful weekend -
impositive: My DS lives in an area of W. Palm Beach, Fl that is part of a cancer cluster (a group of children all with brain tumors). They have checked everything and can come up with nothing that would indicate a problem. The area used to have orange groves and of course pesticide was used, but the ground tested negative for it. Wonder if the tested the nearby schools for mold...I'll have to ask him. That problem is really huge in Fl.
Thanks for the info on the cost of alternative treatment..that would be doable for me..I was thinking much more .I'm sure Medicare wouldn't pay, but maybe for some of it like you say.
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Just some info on some of those Chinese herbs.
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laurajane, im glad youve started on the diet changes, i wasnt sure where you were at healthwise, and whether to suggest that at this point in time. Diet has great influence on triple neg cancer. You will find heaps of info on it here. There is the Gerson diet, the budwig protocol, and a few other trial results that we have discussed in detail a few pages back
...chinese medicine has a long history...go for it i say...i was interested in the ayurvedic ? medicine too...i found an indian doctor in melbourne who sets out a diet and treatment plan for $70 !...It is reimbursed by medicare, so there must be some merit to it!..i thought i could at least get his list, then come home and check out the ingredients on google to make sure theyre ok before deciding..i didnt get to my appt with him last month, i should do it...
Only we are in charge of our lives and how we deal with this disease...im proud of your attitude
it was rainy all day here...so i practised my new physiochi routine..its very nice....push the mountain..paint the rainbow...brush the peacocks tail..I surrender...these are the terms used to explain and remember each movement ..its really lovely, and a safe low impact exercise...
Heidi, ive started weightbearing exercise too...very minimal to start with...pushes against a wall, raising on toes and holding...squatting and holding for a few seconds...slow and steady...:)
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Just FYI, Dr. Block's book is available for Kindle... that way you can keep it handy on your iPhone, PC or Kindle (or like me, all three!).
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hey lulubee, what's kindle?
heidi: re the doco, the fellow who organised the meeting with the women from the ABC who had breastcancer does, towards the end, explain that he didnt find a connection between the biopsy samples they gave him..he seemed very dissapointed. but i think the underlying point of the doco was to explain that it took 30 years for both the hpv virus/cervical cancer, and the pylori /stomach cancer connections to be proven...He was looking for activity from the mouse mammary tumour thingy that some women with BC have in their tumours. I used to have pet mice as a teenager
Medicic, eve, impositive..great to have you here..thinking of you all and your treatment plans...anyone have experience with the gerson diet? im seriously considering it..
Impositive: what diet have they recommended to you along with the treatment? any?
Kaara..you are really on top of it, keep us informed of your decisions
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that's-life: I think if you google Gerson Diet you will get all kind of information about it, including a book you can order. There are a couple of movies out about it..."The Beautiful Truth" is one and it is excellent. It's all about juicing and eating raw foods...oh...and taking coffee enemas at least once a day. The home office is in San Diego, CA and there are clinics in Mexico and Hungary. None here in the USA as yet. I did read something about a support clinic in Hawaii, but have not been able to find that again. We're on a variation of the diet, but still include some fish and chicken for protein. We feel great and have both lost weight. Our skin even is looking better. Haven't been able to tackle those coffee enemas just yet! Anyone else done them?
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thatslife --
Kindle = the Amazon.com eReader.
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Ladies Coffee enemas...It was recommended that I do one everyday but will admit that I have only been doing them a couple times a week. They are time consuming and require some prep and clean up and I get lazy, lol. By the time I take my IV drip, which is usually an hour or two, (depending on how fast I set the drip speed) then do an enema (usually an hour total between prep, enema time and clean up) I have used up my entire morning! Today, I also sat in the sauna for an hour and by the time I knew it, my day was half over! However... I highly recommendcoffee enemas. We have to detox. If we dont, out bodies just reabsorb the toxins that are being killed during treatment or diet. The treatment leaves me with a headache most days. I hate taking Ibuprofen but some days it's necessary. I have found on the days when I do the enema, my headache goes away! It's been a pretty amazing discovery for me. Plus, I feel lighter and cleaner!
The diet they recommend is the Doug Kauffman Phase I diet. You can find it at Knowthecause.com if you want details but it is basically a whole food diet, no grains, no sugar and no foods that are known to be contaminated with mold such as corn and peanuts which are almost universally contaminated because of modern day commercial storage practices. The lesser sugar fruits are allowed as well as meat that is grass fed, free range, organic. The other option is the Bali Diet by Dr Roby Mitchell (also known as Dr Fitt-you can google Bali Diet and Dr Fitt). Bali stands for Basic, Antioxidant/Antifungal, Low insulin. He recommends eliminating white flour, salt, grains and dairy products from your diet and replacing them with fish, skinless chicken, organic beef, raw nuts, dark beans and eggs. The diets are pretty much the same with a few small differences.
Kaara, A great while back, over on the fungal thread, someone (I can't remember who) posted that same sort of story. She was a teacher. I even think it may have been in Florida. She and a few of her co-workers had been diagnosed with bc. She thought it was more than a coincidence. I mentioned mold and she said the building was very old and indeed did have mold. She said they supposedly cleaned it up and painted over it. I asked her about the kids and behavioral problems, illness, etc. She said they actually have one of the highest absentee rates and learning dis-ability rates in her area, as well as behavioral problems. I wish people would take mold more seriously. These poor children (and teachers) are probably being exposed on a daily basis and are getting sick and/or blamed for their behavior and grades when it's not at all their fault!
Btw, from the research I have done in regards to fungus and bc, I have learned that it is very difficult for scientists to find virus, fungus and/or bacteria in bc specimens. This especially true if they dont know which one they are searching for. If it's not a live specimen, (which of course they never are once they are cut out of our bodies) the specimen has to be stained with the proper stain to reveal the proper pathogen. Certain stains wont reveal all pathogens. Perhaps that's why it took so long for those scientists to prove their cases. That, and of course, the resistance of the mainstream to co-operate and believe it!
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Impositive: Thanks for the info. Hope your treatment is going well. I will have to go to the other website and check up on you. Keep the faith!
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Thatslife, thanks for the summary. My daughter interrupted with homework questions a few times so I missed some crucial parts.
I found this link on fasting http://www.webmd.com/diet/features/is_fasting_healthy?page=3
I was doing the Ramadan-style fasting. The other options mentioned in the article are alternate-day fasting and the one I may try after the holidays is 4-5 days' fasting a month. The doctor quoted said this brought some patients to the "next level of immune competency." Well, I expect we need to have the highest level in our situation. I'll have to research what 4-5 days' fasting entails and how doable that is. Maybe exercise will have to be put on hold for that period.
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