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Topic: Holistic tx only--what I've done

Forum: Alternative Medicine —

This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Dec 13, 2016 03:08PM

pipers_dream wrote:

I've had several people PM and want to know what I did for treatment and I've been bad about answering them but time has been in short supply so I just thought I'd put this up here. I am not calling myself a success story and in no way would my path be for everyone but some are wondering what I've done and what I'm willing to live with. Turns out I'm really comfortable with uncertainty, which I suppose is a strength and certainly one I never realized I had. Slowly in my life my personality has revealed itself little by little and I still surprise myself.

I got dx'ed mid-November 3 years ago and it was completely overwhelming to me. My husband had left me a few years before this after a very long marriage, I was a very new empty nester, and I had started not just a new job, but a new career as a special ed teacher, under very trying circumstances and after having to move to take the position. The lump was not a lump--it was a subtle rippling under the skin of my left breast and I saw it in the mirror one morning. I'm normally a procrastinator but I got right in and got it checked and it was certainly BC.

They started right away making mistakes with my tests and such. I had to miss an important scan b/c they failed to schedule it in line with when my period was due. One male doc told me lumpectomy but the more competent woman surgeon in St. Louis marched in and said grandly, "Off with the boobs!" Well she said something like that. I went ahead and scheduled it for January of 2014, but the more I thought about chemo and radiation, the more reluctant I felt and of course I was googling like crazy and reading many books.

I wanted to do holistic but wasn't even sure where to start. Thought I'd start with detox but much of what I read said don't do it if you still have metal fillings so I made an appointment with a holistic doc in St. Louis, 2-½ hours from home. The appt was on Monday and the surgery was scheduled for Friday of the same week. The doc took a look at me and told me I didn't look too bad and suggested that if I were willing to postpone the surgery, he figured he could help me knock it down to a lumpectomy, or possibly no surgery at all. The idea of canceling a major surgery was really scary b/c what if they got mad and refused to treat me after that. I decided to go ahead and do it anyway and immediately felt like a huge weight was lifted off my soul--I was very peaceful about my decision. By this time I had been on the ketogenic diet for 2 weeks and the cancer seemed to have stopped growing. I had felt it grow before--now it had stopped and all it took was to get the sugars out. I might add that I'd had a terrible sugar addiction all my life so I wasn't terribly surprised by this.

At this point I'm going to stop and tell you all why my reluctance to do conventional care. The first and most obvious one was the fact that I've always been a wannabe hippie. I was 5 years too late for the real fun, so I thought, but had always fooled about with herbs and making my own salves and herb teas and such and I actually think this is fun. The other reason was darker--only a year before as I was going thru mom's stuff after she died, I found pix of her aunt who had died of BC. She had a rare reaction to the chemo they used and was burned from the inside out. The pictures were horrific and I remembered some of the things they used to whisper about the case when she was dying--I wouldn't wish such a fate on Hitler. I knew that I wasn't going to do that. Some have pointed out that cancer meds have changed a lot in the last 25 years but when the MO gave me a list of what he wanted to use, that one was on the list. I knew it was a rare side effect but we were related.

So I will stop here and resume in another post b/c this one is getting really long. BRB.
Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Jul 9, 2017 02:12PM pipers_dream wrote:

Oops Bosum, I meant to get this to you: Fat for Fuel by Dr. Mercola I'm putting this out there b/c the book is specifically directed at cancer patients and it seems to be springboarded off Travis Christofferson's book Tripping Over the Truth. Both are good reads for the metabolic theory of cancer as opposed to the genetic theory, which seems to have come to a dead end according to both authors. I know some believe that Mercola is a quack and I will say that I don't agree with everything he says but I have learned a helluvalot from him and his advice has helped me tremendously.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Jul 9, 2017 02:16PM MelissaDallas wrote:

I assure you I fasted for several months beccause the ascites and tumor were so huge they compressed my stomach, heart and lungs to the point I couldn't eat, had cachexia, malnutrition and a PE, so no, fasting (even involuntary) didn't help. It almost killed me

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 9, 2017 11:39PM Momine wrote:

Piper, :D Yeah, Mercola is a quack, but even quacks may trip over something useful here and there.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Jul 9, 2017 11:40PM Momine wrote:

Melissa, that sounds horrifying, so glad you are here to tell the tale though.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Jul 10, 2017 04:44AM new_direction wrote:

I think fasting helps but has to be combined with blocking the glutamine metabolism.

from another thread:
https://community.breastcancer.org/forum/73/topics/856479

Although dietary energy restriction and anti-glycolytic cancer drugs will have therapeutic efficacy against many tumors that depend largely on glycolysis and glucose for growth, these therapeutic approaches could be less effective against those tumor cells that depend more heavily on glutamine than on glucose for energy

Glutamine is a major energy metabolite for many tumor cells and especially for cells of hematopoietic or myeloid lineage [47,49,294,295]. This is important as cells of myeloid lineage are considered the origin of many metastatic cancers


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Jul 12, 2017 10:48AM pipers_dream wrote:

Melissa, I too am glad you're here--most with ovarian cancer are not so lucky. I'm sorry if I offended you in any way with this and I by no means am suggesting that fasting is a cure for cancer but I do believe that it can be one contributor to rebalancing the body back to the "maker's specifications." However, I hope I am appropriate in suggesting that it may be a factor in leading to the fact that you're still with us. We'll never know of course, which is the objection that most mainstream docs have to holistic methods (voluntary or not), in that holistic treatment throws everything but the kitchen sink at cancer and if it helps they have no idea what was the biggest contributing factor. Mainstream docs have a mindset that values certainty.

I just finished a very good book on fasting called The Complete Guide to Fasting by Jason Fung, MD. He deals with a lot of diabetic patients and has managed to help just about every one of them to reverse their disease. Part of his explanation for why this works better than diets, even very low carb ones, is b/c nothing will get the insulin level down more than fasting. You need to get insulin down as low as possible in order to start losing fat b/c insulin is the fat storage hormone and while it's up, there is no possible way that fat will come off. I have come to believe that it's not as simple as "sugar feeds cancer"--what actually happens is that eating sugary foods raises your blood sugar which raises your insulin level and it stays high when you have metabolic syndrome so you can't lose weight, even when on the ADA diet or weight watchers, or any diet which allows carbs. Some folks even have trouble with keto diets b/c if they've done it a few times they have more trouble going into ketosis. All of this may explain why metformin helps those with cancer or helps people to not get cancer in the first place--fasting does what metformin does but w/o the side-effects. I'm not so sure the ADA diet is bad per se, but it would be better to get the weight off first with a combo of fasting and very low carb dieting and then segue over, experimenting with raising the carbs gradually by using root veggies and beans, rather than bread and pasta as your carbs of choice. If you start to gain weight then take another fast day or kick back on the carbs or both. One thing I like about the author is that he does not advise a spartan lifestyle--he insists that you go ahead and eat that birthday cake or Thanksgiving dinner or Christmas goodies and then go back to your fasting lifestyle when the fun is over. He also gives several different plans--most people choose intermittent fasting and some may choose a more extended fast for quicker results. All in all a good read and interesting information. One of his most interesting statements was this: at least 75% of Americans have enough fat stores to walk from NY to Miami without ever stopping to eat! LOL

Good news: sis finished her fast with good results, even tho she did drink some apple juice--she thought it was ok b/c it was "no sugar added" but we all know that apple juice has plenty of sugar of its own. She feels much better so she has agreed to see the doctor. Yay!

New direction: I am going to look into your study--I know that on Dr. Mercola's very low carb diet, he insists that you keep protein grams within tight limits--you must eat no more than your minimum daily requirement in order to avoid feeding the cancer thru the mTor pathway. According to him, most of your calories should come from very high quality fats. Remember, this is a diet recommended specifically for those with cancer.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Jul 12, 2017 11:58AM MelissaDallas wrote:

Piper, I agree about intermittent fasting being good for some things, especially glucose control.

My medical records show "malnutrition" at my hospitalization and I continued getting bigger and bigger with more and more ascites over the course of the months before my hospitalization, so I still think three months of not being able to eat and/or drink made me much iller. The resulting severe dehydration also almost certainly caused my PE.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 12, 2017 12:06PM pipers_dream wrote:

Well good point there. Fasting is never recommended for those who are malnourished and is not a cure-all for everything. It's merely one more tool in our arsenal and great if you can use it but not everyone can. The reason I bring it up is b/c almost no one thinks of it and while many docs are horrified at the thought, it's actually the oldest healing modality on the planet and one that has helped many people. I had bad fibroids before my fast--had just passed my 56th birthday and was still bleeding regularly and then did the fast. Started my period, again 2-1/2 weeks after the last which really pissed me off, and then never had another. That was 2 years ago and menopause was essentially trouble free--none of the emotional crap and very light hot flashes. My ob/gyn had told me it would be hell, due to the fibroids but it wasn't.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Jul 12, 2017 01:41PM MelissaDallas wrote:

I fasted INVOLUNTARILY until it CAUSED malnutrition.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor.
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Jul 12, 2017 01:56PM - edited Jul 12, 2017 01:58PM by pipers_dream

Oh shoot Melissa, I was just getting ready to get on here to explain that I already knew that because I was afraid you would think I was chiding you, but since I'm talking to others as well, I felt the need to explain that one shouldn't start to fast if malnourished. Yes, I do believe that a 3 month involuntary fast would indeed be harmful but glad you're here with us now. Please don't take any of what I say as telling you what you should have done--after all, I've just learned much of this myself. I cannot imagine what you must have gone thru.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Jul 12, 2017 02:00PM ChiSandy wrote:

Such drastic dietary restrictions would, for me, be like being on permanent chemo without the hair loss and immune impairment. It’s a personal decision for everyone, and QOL is high on my priority list. Dairy is not harmful so long as it comes from grass-fed cows who graze on no-pesticide non-GMO pasture and receive neither abx nor hormones (BTW, abx and hormones are illegal now in beef sold in the US). The carcinogenesis of red meat is that it raises the risk—in susceptible individuals—of colon cancer by 6%. But the risk is comparatively low to begin with. And fasting can lower metabolism by sending the body into “famine” mode.

Do what works for you and does not make your life miserable. For me, having to ditch alcohol, caffeine, & dairy and go pure keto (and avoid those “Plant Paradox” green veggies like nightshades that some now say are “toxic”) would seriously interfere with my vacations, deprive me of a hobby I love, and make me a general PITA when it comes to friends (not to mention making me cranky as hell). I once had to house a touring band from back East who were my friends. Lovely people—but one was gluten-free, another lactose-intolerant with nut and fish allergies, another kept Kosher and only one was an omnivore. I felt like a short-order cook at a yoga retreat. Don’t even get me started on finding a restaurant where we could all eat after the gigs.

Low-carb is about as far as I am willing to go.

Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/22/2015 Lumpectomy: Right Radiation Therapy 11/1/2015 3DCRT: Breast Hormonal Therapy 12/30/2015 Femara (letrozole)
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Jul 12, 2017 08:00PM pipers_dream wrote:

I understand what you're saying Sandy and believe me I have the same thoughts. If I have given the impression that I'm doing everything perfectly and that I have a lot of discipline then I have failed in my message. The fact is that I still have about 20 extra lbs and I've been happy with this for awhile b/c I weighed 185 lbs for years but I've realized that my blood sugar is still out of control if I'm overweight. Also I've gained some lbs this year b/c bread is my absolute and most favorite food in the world--I would happily give everything else up if I could just continue to eat bread and I'm really good at baking it besides. I went on a cracker making spree just this past spring and I think I put on 5 lbs just from that b/c I wanted to try out all the variations. But, alas, bread is the new sweets for me. Sad

This has put me right back into sugar burning mode, as opposed to the fat burning mode that I need to be in, so I'm hoping to drop a few lbs and get the sugar/insulin down and then I will be able to have some treats, but certainly not as excessively as I've been doing them. Also, remember, I'm single and I want to date. LOL.

I've had to ditch alcohol anyway b/c I'm ILC so it's a rare occasion when I have a drink, and dairy isn't advised for ER/PR+, even organic, but I do have a spot of cream in my coffee. The good doc says to have that coffee so I do--never gave it up and I drink organic.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Jul 12, 2017 08:08PM pipers_dream wrote:

Bosum, I never took that as criticism but I guess I did feel a little guilty so maybe got defensive. I know how hard it is to get an unwilling patient to the doc since our family has a long tradition of that. I had an uncle who died of Lou Gehrig's (so they thought) and never once saw a doctor for it. The only reason he knew it was LG was because in that side of the family it runs rampant.

I know that what I'm talking about sounds like a lot of work but I haven't done it all at once--this has been spread out over the past 3.5 years and most of the time I spend in enjoyment of what I like to do and my job, but I"m a teacher and have summers off so I do spend a bit more time on it then. And yes, I have def turned this over to a higher power and consider that just as much a part of my healthcare as the other stuff. Remember, I just got back from a month long vacation in South America so I'm certainly not suffering lol.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Aug 26, 2017 04:40PM Houston2016 wrote:

Hello Ladies,

I followed the conventional treatment and completed rads Jan.31, 2017. Since then I started taking several herbal remedies such as Curcumin, green tea extract, reservatrol in tablets. This in addition to vitamin s D, C B complex. Although I did check out the side effects of these supplements but my thought was to reduce the inflammation outweigh the risks. Just this past Friday, I started to feel soreness under my rib cage, underneath the right breast that runs to my lower abdomen. I checked the info on green tea extract and lord and behold, it has been linked to liver damage. My question to you all is has anyone tried this supplement and what was your outcome?Thank You.

Dx 4/5/2016, IDC, Left, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 4/14/2016 AC + T (Taxol) Surgery 10/5/2016 Mastectomy: Left Radiation Therapy 12/13/2016 Whole-breast: Lymph nodes, Chest wall
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Oct 4, 2017 02:32PM Maggiemoo63 wrote:

Houston 2016

I don't take the green tea extract but drink green ice tea everyday and a little to much at times and I don't have liver damage from it.

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Oct 27, 2017 08:03PM hopeful_36 wrote:

Dear pipers,

Very encouraging to read about your path.

Would you update us on your tumor progress? Is it all gone?

Dx 3/27/2013, DCIS, Left, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 4/19/2013 Mastectomy: Left; Prophylactic mastectomy: Right Dx 8/27/2017, IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Surgery Lumpectomy: Left Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 27, 2017 09:20PM Icietla wrote:

Pipers_dream, I recently found some soy-less, sugar-less crackers that might save you a great deal of work -- Medford Farms Stoneground Wheat Crackers.

Dx 2/12/2016, ILC, Right, 2cm, Stage IIA, Grade 1, 0/13 nodes, ER+/PR+, HER2- Surgery 2/19/2016 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/1/2016 Femara (letrozole) Surgery 4/25/2016 Prophylactic ovary removal
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Nov 14, 2017 06:34PM hopeful_36 wrote:

Anyone HER2+ and refusing conventional treatments?

I was HER- first time around for DCIS (2013). 2017 recurrence, they've tested it twice with results "unequivocal". Retested for the third time, and it turned out to be HER+.

It'd be good to hear there is someone else who's gone alternative with HER+.

Dx 3/27/2013, DCIS, Left, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 4/19/2013 Mastectomy: Left; Prophylactic mastectomy: Right Dx 8/27/2017, IDC, Left, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+ Surgery Lumpectomy: Left Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 2, 2017 07:55AM pipers_dream wrote:

Hi all, so sorry I took so long but things are mostly going well and I've not been on here as much. Still I have been thinking of updating for awhile now.

I've been talking to my friend who is going on 9 years with this path. She is still doing well though she calls her breast "the mutant boob." LOL. We lost our first cancer patient in our holistic support group and I'm going to take the opportunity to say that if you're under 50, I would not recommend holistic tx b/c the tumor is so aggressive in folks of a younger age--she was 45. The funeral was very sad as she had two little girls under 10. I suspect she would not have made it anyway but it's so hard to say really. Most of us are doing holistic b/c we all had a deep inner feeling that we personally would not have done well on conventional tx.

Another thing we talked about is the "dark side" of holistic--the fact that after a couple of years you lose your fear and you begin to drift from the program. It's just so hard to keep going at times--you start eating a little junk food here and there, give yourself more breaks from exercise or the endless pills. A little at a time the program begins to fall apart. And yet I guess we've found our balance b/c we still seem to be doing well. At this point I'm not sure I even care since I've lived with it for so long. Did I have a death wish from the beginning? Many of you would believe that the answer is yes, but perhaps ... well I just can't say. I'm living my life day to day and drinking club soda when I go out with friends. I'm constantly having to pull or push myself back into it and guess I always will. Either way, whether I live or die soon though, I suspect I will think this was worth it.

The main thing I am grappling with right now is the emotional end of this. My family was so dysfunctional as I was growing up. We appeared normal to the outside world but I'm beginning to have the thought that it's possible my mother was a sociopath, or perhaps had S tendencies. Dad was a functional alcoholic and mostly ignored us so we were all severely emotionally neglected growing up and I'm having trouble getting past the sadness of what might have been. It starts eating me every year just before the holidays and it's eating me now. I'm not openly depressed--I get up and go to my job every day, but my mood is often so flat or irritable that I'm having trouble even caring about the future, even though I have two delightful daughters. Lately I've been over-sensitive and have had several run-ins with friends or co-workers and though these situations seem to be clearly their fault, I can't help but think that I've done something to spark these off. My therapist says that I need to drop that line of thinking but it's hard to believe there's not something wrong with me as I've felt that way all my life. My sister is the same way--a big hallmark of those who were emotionally neglected is feeling that you're fatally flawed. Still I will keep plugging along and though I'm not fit company for anyone right now I will go dancing tonight with the friends I have left, lol.

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-
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Dec 6, 2017 04:22PM gemini4 wrote:

Big hugs to you, Piper! I rarely check BCO these days but decided to catch up today. I was glad to see you posted, as you're one of my board favorites. I'm sorry to hear you're feeling down. This is definitely a tough time of year. I ordered (and received today) a special wake-up alarm clock lamp for my bedroom and one for my daughter (age 18, HS senior). It simulates sunrise, and I'm eager to try it and hope it works. It's really hard to get up in the morning when it's so dark right now -- super depressing. I also ordered another light therapy device that's due later this week. Didn't mean to make this all about me, but wondering if the short days are also contributing to your feelings of darkness right now.

I would go dancing with you if I lived near you! :-) Keep on dancing and stay connected with your friends -- you don't need a lot ... a few quality people are better than a crowd of acquaintances. Hang in there, and please keep in touch here.

xo

Age 48 at Dx, pre-menopause / OncoType score 16, no chemo Dx 12/7/2012, ILC, 1cm, Stage IB, 0/2 nodes, ER+/PR+, HER2- Surgery 12/18/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 1/14/2013 Lumpectomy: Left Radiation Therapy 2/10/2013 Breast, Lymph nodes Hormonal Therapy 4/3/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 6, 2017 05:04PM pipers_dream wrote:

Oh my goodness gemini, tomorrow is your 5 year anniversary! Congratulations!

Yes I've wondered if it's the darkness making me dark too and I've even wondered about the spraying of the cotton crops around here--they dump a substance very like agent orange on the fields with planes and it has neurological effects that I've noticed in other years also. In fact, I get this way about the same time every year. I've responded by getting serious about my diet again b/c I was beginning to stray and I had to have a come to Jesus talk with myself. Feeling much better lol. And maybe that fast helped and cleared some cotton toxins out of my system. Thank you for your kind concern and I've been considering getting one of those alarms too. Where did you get yours?

Breast cancer should not be something to fear but rather a call to go deeper in this journey called life. Dx 11/14/2013, ILC, 5cm, Grade 2, ER+/PR+, HER2-

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