natural girls
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I take glutathione related supplements (TMG and NAC) and I think they've been great for my digestion. A clean brand of whey protein powder is Vital Nutrients. I eat tons of protein powder and it's great but SO EXPENSIVE!! I've been trying to figure out of I can give it up, but I start losing weight like crazy every time I try...
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Eve, I am so sorry to hear about your struggles with the cording, the seroma, and all the emotion that goes with the territory. LE will always be a concern, and it can happen at any time, as you know. You can beat back the cancer beast but have your quality of life trashed by LE. Hardly seems fair. Please don't beat yourself up for the node removal. You did the best you could at them time, and you can't change any of that now. I hope everything clears up in time and you are not left with LE.
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eve, sorry to hear about the cording, even though I don't what it is. It sounds uncomfortable, whatever it is. When you get the rebounder, my suggestion is to wear shoes. Freaky side effects me had pain in my second toe on the left foot as a result of using mine without shoes.
The ladies in the lymphedema section are very knowledgeable and helpful. To this day it floors me that not one of my medical professionals ever mentioned lymphedema once during my year of treatment. Each of us is probably half way through a self paced university of medical knowledge with all that we have to learn on our own. I'm wondering if the LE ladies talk about dry skin brushing? I do this when I remember. I use a brush made of boar's hair. Just a very light touch is all that's needed to stimulate circulation and movement of lymphatic fluids.
Another thing I've been doing for a long time now is abhyanga. It was one of the MANY things I tried over the years to combat the fatigue I couldn't shake for the longest time. In a nutshell, it's self massage from head to toe with coldpressed oil (I started with sesame and now use coconut). It didn't phase my fatigue problem that I could notice, but it did wonders in soothing the scar tissue from surgery. It's also my hope that it helps my lymphatic system. Even if it doesn't help, I would continue with it anyway just because it feels so good! It makes my skin feel and look great. My sequence is to start with my scar tissue, then my head, and down to my toes. Then I ease into a bubble bath infused with epsom salts. It's an uber deluxe spa day without leaving the house. ....of course, fresh out of surgery, this would not be an option yet. This is what I missed more than anything after my surgeries.
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Eve, so sorry to hear of your frustration with your lymph node removal. I had eleven removed (definitely the standard of care 10 years ago) and basically I guess you can say I no longer have an armpit. The good news (besides they were clean) is: our youngest thinks it's so cool that I can make "that certain sound" from under my arm without placing my other hand in my arm pit. In fact, he often asks me to preform for his friends and I always oblige. (Hope the story made you smile
Seriously, it was a long, slow recovery (I had three kids without drugs and this was MUCH more intense than even the two breast cancer surgeries) so remember to be patient with yourself. I never wore a sleeve so I can't speech to that. And, thankfully for the past 10 years have never experienced the arm swelling.
I found yoga to be a wonderful and gentle way to gain back the range of motion in my arm at my own pace. (The mental and spiritual stuff doesn't hurt either.) I do the hot (Bikram) yoga which lets you get a deeper stretch and I like how it helps regulate my "heat issues" as well since I'm in menopause.
Keep us posted. It's always good to hear what works (or doesn't) and how others are doing emotionally, spiritually and physically.
Best health always to you!
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Hello ladies,
I would like to join you. I am 43, diagnosed a year ago. I had bilateral mastectomy with DIEP, chemo (T/C). Right now I am on zoladex inj until ovary removal (probably end of this month). I had three cancers in my right breast (two being IDC and one ILC). Cannot take Tamoxifen due to clotting issues and cannot continue with inj as was diagnosed with prolactinoma in 1998. So, ovaries are going out. So far I agreed with this Tx and feel good about it.
Now, my onc wants me to start Femara, gave me prescription. I think I did enough of conventional Tx and would like to try something else instead. I know that I would still have some estrogen after ovary removal but I think that with diet, exercise and natural supplements I can somehow block that estrogen. Any thoughts, suggestions.
I know it was probably written already but there is 270 pages, I am planning on reading them but it would take some time.
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Re: the question about GNC Melatonin....I have experimented with several brands. I take 20 mg most nights if I remember to start at 8 pm...I usually take 15 mg at 8 or 9 pm and then take 5 of the 1 mg sublingual GNC cherry flavored chewable as I go to bed usually around 1 or 2 am. I've used variations of 3 mg timed release life Extension and my doc's personal brand and I use GNC's 5 mg. I like all of them fine. But I think I like the 1 mg chewables best.
Re Whey protein...I have done lots of research...even my son has switched to my brand after further researching his brand that he had chosen after much research...we have settled on Defense Nutrition's Warrior Whey...organic...grass fed. etc. Yes...expensive as is all of this stuff once you start trying to pick high quality brands.
I keep telling relatives who buy the cheapos that say everything can fit in those little pills that if you look at my counter full of stuff you will see that one pill would have to be about the size of a baseball.
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Oh man.,,,,,,,,,,,, Ladies...... after all the blood work for two years in a row....... and my onco. telling me I was 100% through Menopause......and not having a period for 8 months PRIOR to chemo.... and now almost three years PAST chemo...... I started my period today????????????
Could it be the Bio-Identical hormones I started three months ago?
SO WIERD.
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Eve, After I had full axillary clearance on the affected side, I had cording from armpit to almost my wrist. Swelling below and beside my armpit, lots of pain there but especially the cords. After the drains came out I developed seromas on both sides and on the affected side I had a couple of rips in the wound where the seroma fluid was bursting out. After the fluid drained the wound would close until a few days later, I'd stand up or lean over and swoosh, it all poured out, through the diapers I was using to soak up any leaks and all down my clothes. I had one big hole with muscle showing through when it first burst, and of course lots of antibiotics to try and heal the wound in time to start chemotherapy. I avoided the recommended exercises and nursed my arms at first till the pain stopped. The cording went away gradually by itself. Now, 20 months later I finally realised the adhesion of the scar to underlying muscle has finally gone (probably been gone for months) and I've only had a little swelling under the arm once or twice in hot weather. I do the lymphatic massage to develop an alternative pathway for the lymph in case I ever get excess fluid. I use a mini-trampoline and have done plenty of exercise.
So there is hope. I'm sure many must start with post operative swelling which never returns. Once again it's that frustrating waiting around to see what eventuates that's such a pain.
One funny note, It was when the seroma burst one day and I had to borrow a top from my sister that my mother uttered the immortal words, "Don't ask me to come into the bedroom while you're changing, I'd feel like you'd been mutilated." While my sister and niece froze in horror, I just broke up laughing, then so did they when they saw me in fits of laughter. Only my mother could be so completely insensitive and not even realise what she'd said. In retrospect, Mum was in the early stages of Alzheimer's so it's as well I didn't take offense. She's such a treasure.
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Estepp...I would think it is from the bio identicals. I am meeting with Vivre's DR, on getting balanced. I would contact your DR and see if all is balanced and levels are ok. I know the testing will be done for me,every three months.0
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Estepp: Not being a doctor, I really don't know what is going on. A little weird, indeed. I agree with DonnaDio that you probably want to check with your Doctor.0
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Estepp: The bioidenticals can re-start your period. It is producing the hormones you have been without, so it's very commom. I get cramps but no period yet. I am betting I too will get them eventually.
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I knew you would know Mary...thanks ladies...I will be seeing my doctor for a full exam in two weeks.
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Oh Evaberry, I am SO sorry to hear of your struggles, especially being "blindsided" or "surprised" when you went to sign your surgery permit. There are some very good physical therapists and specially trained massage therapists who can help a lot with the lymphedema. I hope your symptoms resolve and let you get back to normal activities.
I hate surprises. I nearly did NOTHING other than ask for lumpectomy. I initially refused ANY additional treatment, in fact, asked to not go through biopsy prior to lumpectomy because I knew there was no way I was going for axillary node removal after I had done a TON of reading and research, so the biopsy was kind of unncessary in my view (surgeon prevailed on that one). The surgeon was not happy about not taking sentinel node, but did tell me that there was no evidence it led to improved survival, but MIGHT decrease local recurrence. I made very sure that my op permit specifically excluded anything other than lumpectomy, and specifically told my surgeon and husband that I did not want any "surprises" such as waking up with no breast, even if she found a tumor that was so large she couldn't get it. I have learned to not trust well-meaning health care professionals too much! I do like mine, but have a very healthy skepticism!
I also refused radiation, but did finally agree to chemo because of the tumor size and grade and 2 nodes involved. I felt like I had to do at least SOMETHING since we knew 2 nodes were there that still had cancer in them). I was more terrifed of nerve damage and lymphedema than I was of short-term chemo effects. I also tried tamoxifen as recommended by my MO, had horrible SEs, so quit that and have quit ALL my meds except ambien for sleep and am feeling 1000% better!!!! Just cannot convince myself to go back on tamoxifen as we don't even know if it will work in my individual case. What I do know is that I want to live for now and enjoy life NOW as the future is always uncertain. I am enjoying a healthy diet including and have even discontinued suppements other than vitamin D and E, and I use flax seed for heart and joint health (my only source of omegas as I am vegetarian).
OK, I'm talking again and can't shut up. Sorry about the long post.
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N3Ypb- - Love your attitude. Live for NOW. One thing BC did for me was make that abundantly clear. I relish every single moment of every day. Even the "bad" ones, which don't seem so bad anymore.
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Estepp, it is true that most women get their period back on bioidenticals. Dr. Rashid talks about this in her book, Hormones Explained. I think she would be willing to do an online chat with us on my website sometime if people are interested. She might be able to answer some of these questions.
NsYpb-I really admire your initiative. I still cannot believe how easily I was led. I wish I had had the courage to say no to radiation, but I was in such a fog that I just did everything I was told. I only had two nodes removed but it took me a year of therapy to get rid of the pain. I cannot imagine how horrible it is going to be for my aunt, who had all of hers removed by a butcher. I still can see damage on my breast on my therms where they put all that radioactive junk in me to find the sentinal nodes. Whatever happened to first do not harm?
I hope many of you will try to make it to the Health and freedom Expo in Chicago in June. It is really worth the trip. And I may be speaking! It would be great to have all of your support. The topic will be Why it is time to Think Beyond the Pink.
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Greetings Ladies,
New natural gurl on the block....so glad to have found you !!! Would love to read back to when it started, maybe one day soon. In the meantime, is any of you experiencing extreme fatigue. I have to get back to work very soon and dun't know how I can do this. Finished six rounds of TAC last May and 20 rads in July + Tamox. Have to wonder whether rad killed my thyroid and will have it tested. My RBC is low, so found some fenugreek seed in a tablet and hope this will work, cannot trust iron, highly debatable, even though prescribed...... Taking multi-vits, omega 3, calcium/magnesium combo, CoQ10, pondering about melatonin and yeast extract as my regrowth is too slow for my comfort
In spite of the pharmacist team telling me prior to chemo to "eat at McDo every day if I wished to" - yuk, yuk, yuk - could NOT believe what I was hearing - been trying to eat as healthy as I can. Been juicing, blending, steaming. Seen a new machine on the market that blends raw veges. Will get back to u on this.
Looking forward to your precious advice
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nikola,
about estrogen, go book yourself for an appointment with an endocrinologist, one who can order a diagnostic test for hormonal imbalance (sometimes called metabolic liver test).. this will help you find out if you are correctly metabolizing estrogen-- then probably prescribe you with I3C/DIM ...again please see a license endocrinologist who can talk to you about this and order the test..as well as explain the results of the test for you in detail
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ive been an irregular lurker for quite some time.. have followed vivre's website as well as evebarry's site..
long threads.. but I find comfort here.. knowing that there are equally minded intelligent girls out here who believe in alternative medicine..
my grandfather was the town's natural healer in his hometown (this is probably one of the reasons why my mother cannot be swayed to take conventional medicine)..
he has been long dead now.. but his legacy leaves on. I enjoy all the stories that my mother's siblings tell me about him healing their diarrhea by having them drink castor oil. how he healed their cough, also with castor oil.
how when they have fever, they will be asked to take a bitter green slimy juice of this or that leaf..its amusing and also heart warming at the same time (my mother have 7 male siblings and 4 female siblings)...
they tell these stories with profound affection for my late grandfather.. if only he is alive now.. I guess my mother and I will get the best support from him.
however, my mother tried to be very much "UNLIKE" her parents.. that when she had me, I have all of the conventional vaccines.. and every antibiotics available in the market because of my frequent tonsilitis. I also had my tonsils removed. all because my mother wanted to be so "unlike" and not as "uncivilized" as my grandfather..
after a while, after seeing how the antibiotics, wrecked havocked on my digestive system, she realized something is terribly wrong.. now she values everything what my father had told her about working with your body not against it. use natural elements to cure natural ailments..
she learned the hard way. and for a time, I also tried to be so "unlike" my mother,, before I realized, we had so much in common, that denying it, is denying my real self.
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I am a Filipino single mom who have been working and living in Singapore (with my 60 year old mother who was diagnosed with BC IDC stage 2B ER+/PR- Her2+++ last Jan 2010 and my 5 year old daughter) for the last 11 years.
I can say coming from a 3rd country and moving to a 1st world country (Singapore) has been quite an experience.. I have a connection with people who are naturally inclined to natural medicine (for them it is not called alternative-- in fact to them it is called conventional or traditional).. because natural is the only one available to them..
I also have connection with people who have access to both worlds-- both conventional medicine and what we call now as alternative medicine..
its funny to witness the reversal of terminologies, just by traveling by plane for 2 hours.. in my mother's hometown.. what we call as alternative is actually what is called conventional.
and despite all the advances in technology in medicine, in science.. Singapore is still searching for that illusive cancer cure..
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I have a question I keep forgetting to ask. As many of us are ER+ and PR+, why is the focus completely on eliminating estrogen only?? The doctors insist we have to eliminate all estrogen with Tamox of AIs (which I still refuse to take). Why are they not concerned with the PR+ part of the equation?
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DesignerMom, maybe it's because progesterone actually might be suppressing the cancer growth rather than feeding it as estrogen does. Women on hormonal replacement with estrogen are told to always take progesterone too, to prevent the proliferation of the uterine lining. So if it suppresses proliferation in the uterus, it probably does the same in the breast cells. I know that the WHI studies show that progestins with estrogen lead to higher BC rates, but I believe in the bioidentical progesterone as being beneficial as compared to the synthetic progestins.
I know that the stronger PR+ you are, the better the prognosis for hormonal therapy to work for you. I was 100% PR+ and only 50% ER+, but my Onc said he was very happy about the strong PR positivity. I beleive it's tested just as a predictive factor for how well you will do with hormonal therapy.
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Rose-Hmmmmm...still puzzled. Thanks for your feedback. I am wondering if "unopposed estrogen" allows too much estrogen to feed the ER+ cancer? Then why would doctors not test both ER and PR and try to balance them so they don't get out of control? I guess this is the theory with bio identicals? Jeez, I never wanted to be a scientist! I am a designer!! Why hasn't someone figured this stuff out by now?
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Designermom: Pharmaceuticals make way more $$$$ giving us chemicals then having a compounding pharmacy actually balance our hormones. Anything 100% natural cannot be patented so a regular dr. will rarely prescribe bioidenticals. I believe that balancing hormones makes way more sense then supressing estrogen, but I am triple negative for hormones, so it isn't my place to speak for those who are ER+ PR+. I would like to think I would still do bioidenticals to balance rather then take Tamoxifen to supress, but this is only my opinion. You would have to find yourself a good integrative dr. if you want something different then the standard care.
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I find this topic so interesting. I had 3 different places run my ER/PR. In all three my ER was 99%, but my PR changed with each patholigy rport. From my biopsy it was 65% my lumpectomy was 34% and Oncotype DX was PR-. I have no idea how all three could be so different.
The other thing that troubles me is my Onc. seems to feel it isn't necessary to check my estrogen levels. I have been on Femara for 6 months. How do they have any idea what my levels are now?
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Luan, fatigue is the number one reason I've been a participant here for such a long time. Despite the fact that radiation is notorious for knocking our thyroids out of balance, receiving help for this problem is a problem in itself. I haven't seen any stats regarding what kind of time medical students receive on thyroids, but I suspect it's on a par with nutrition, if that. Stats say medical students often graduate with only 2-6 hours of classtime devoted to nutrition.
When you seek help with your thyroid questions, if you encounter a physician who uses TSH and nothing else to evaluate your thyroid health, look for another doctor. At the minimum, you need TSH, free T3 and free T4 testing. Most people feel best when their TSH is around 1.0, even though the 'normal' range tops out at 3.5. It used to be 5.5, a standard that changed in 2002, which my former doctor didn't know, didn't want to know, in 2008.
At the time I was thinking an endocrinologist would be the next step. nanay, maybe in singapore they're effective in treating thyroid health, but where I live, these doctors tend to have their offices filled with diabetes patients. ....and considering that my city has one of the highest diabetes rate in the US, it's abundantly clear to me they're only treating symptoms. sigh
designermom, I had the exact same question from very early in my bc experience. All this focus on estrogen and how to suppress it. My sil gave me Chrisiane Northrup's book on women's health, which I loved. In a nutshell, she explained how estrogen is in charge of cells cycling in, and progesterone is in charge of cycling them out, aka apoptosis. I'm thinking, wtf, why isn't everyone more focused on progesterone??? Just five minutes of reading about cancer tells a beginner that tumors are the result of cells rapidly dividing and growing out of control. So, why not beef up some cells that will take them out?? As it turns out, Dr John Lee did study progesterone and wrote about it. I was floored that my onc didn't test my hormone levels! We're expecting to take hormone therapy but it's of no interest to them to know what the levels are to begin with?? Some ladies here do have oncs that test hormones, and I remember feeling very envious of them.
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althea: I have read both of those books, and if you and I can figure it out, makes me wonder what the heck they are teaching these dr's anyway??!! That's why I love these boards-so we can get the help we really need. I always feel as if the medical community as a whole is about 20 or 30 years behind the actual proven research. It's just crazy.
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Right on, MBJ and Althea. I made my decision to not take Tamox based on what I've read about cells and estrogen vs. progesterone. My levels were 97% Estrogen, 98% Progesterone. In my point of view, Progesterone was beating the Estrogen (not by a long shot!), so I've been using exercise and diet to lower my estrogen levels naturally. I had my estradiol test done, and my estro levels were in the low range based on that test. I know hormones fluctuate a lot, so I won't rest on any laurels that I've created the ideal situation in my body, but I know that I am doing everything within my limits to curtail estrogen. I'm going to visit with an endo to see about progesterone (bio-identical) one of these days. I have absolutely NO LIBIDO, but cannot figure out if that is just 3 kids and marriage, or if it's hormonal. Who knows? I intend to bring it up with my OB, as I've been too embarassed to mention it in years past......
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althea and MBJ,
your qeuestion about why most oncs- do not test our hormonal imbalances when they are prescribing hormone theraphy is also beyond me..
the conventional girls (who are posting in WOMs post)-- almost picked me apart by implying that it is ridiculous for me to ask why endocrinologists (or any doctor who can order a hormone test) talk to the oncologist or why an oncologist deal with the complicated world of hormones -- when they dont test your hormone profile anyway..
medical oncologists-- just treat the symptoms.. and I agree you will be lucky to have an oncologist who will agree to order hormone metabolic tests with you and also sit with you and discuss it with you without being defensive..
I hope the oncologist am scheduled to see on 4th may -- will be that kind of oncologist
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Ok ladies another comment/question. I eat like 10 servings of fruits/veggies a day, and I suffer from so much gas because of this. Don't wanna blow the family away. LOL
WHAT DOES ONE DO??
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Thanks althea, makes me feel better I'm not alone - trying to determine whether chemo, radio or Tamox in my case is doing what, where, when and how has me in a tiffy. Same in Montreal, my endo treats mostly diabetes and has such a paternalistic attitude, I can't stand him. Last time I asked something specific, like could thyroid and BC be related ? he asked "whoever made you a doctor?"
I've about given up on my oncologist.....and asked my gynecologist to test me for hormones - he suggested I give a copy to the onco which I plan to do if only to keep him apprised !!!!!!
On another note ladies, when I asked the pharmacist (at the hospital who brews our cocktails) re Tamox and progesterone (what I have read is that BC could be related to progesterone and not estrogen....!) she told me Tamox took care of both.
Don't know if many of u are on Tamox ? my question to her was : Is it so smart so as to block only breast receptors and not all the other ER receptors in our body and she answered Yes ! I highly doubt this & will have to investigate this further. The more one digs, the more confusing it gets. Feeling like Sherlock Holmes on a mission
Fighter, re gas, tried Beeno and digestive enzymes. If you go for the natural stuff, be careful to select enzymes from herbal origin only, as some products contain pancreatic enzymes from bovine extracts.
Chow for now !
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