Considering Going the Opposite Way with Supplements

According to what I've read, weight-gain is not a major side effect of tamoxifen; in fact, it seems more women lose weight than gain weight while taking it. But there are some huge confounding factors that make an easy answer impossible. Many women struggle with weight issues after menopause and since many women are thrown into menopause by chemotherapy - before they even begin taking tamoxifen - any weight gain after treatment would be difficult to pin down to solely the tamoxifen alone or vice versa.

The only supplements I take are ones recommended by my doctor: calcium for minor age-related bone density issues; melantonin to help me sleep (I'm a raging insomniac), and low-dose aspirin to counteract my strong family history of stroke and tamoxifen's increased risk of clotting. Having been raised in the country, I've always been surrounded by the whole home-grown-is-best mindset and eat very little pre-processed food and I've always been very, very active. Yet... here I am. Good, whole food and exercise did not prevent my developing breast cancer, but - because I was following a healthy lifestyle - I had a good, solid basis for getting through treatment and recovering afterward.

Certain things we can't control: the fact that we are women; have breasts; family genetics; early onset menses; late onset menopause; etc., but others we can: don't smoke, keep to a healthy weight, exercise regularly, ensure that you get the recommended nutrition, manage your health appropriately. I don't think of these things as alternative or complimentary, but necessary to well-being. They may not help prevent cancer/cancer recurrence, but they may lower my risk, as well as my risk for other serious health issues. Overall health is so important! I'll never take good health for granted ever again.

Everyone gains weight on tamoxifen. I gained 40 lbs. And you hear the same thing over and over when you talk to people who have been on it. The docs will lie and say no, maybe it's menopause, etc etc but we know our bodies. For me there was nothing different! Have been normal weight all my life, never thought about it one way or another. Did not gain any during treatment even with the steroids during chemo, etc. Was in menopause for almost a year and never gained an ounce. Started on tamox and up & up it crept! Started logging calories (a foreign notion to me) just to see, and average day was under 1,000. Am active, work, exercise, etc. Still went up and up. Nothing different but the drug. I know it caused it!!

I have lost 110 lbs. I had dropped 18 before the diagnosis on a lower carbohydrate grain-free diet, and the rest of it since dx end of July on a full ketogenic diet. 40 of that has come off since I started the tamoxifen in November. Gaining weight on tamoxifen is not inevitable, but many either don't know how, or are not willing to make the kind of strict adjustments to diet that are necessary to fend off the metabolic changes that tamoxifen probably causes. There is too much conflicting info out there, and a lot of unfortunately deeply ingrained (heh) bad nutritional advice on what really constitutes a healthy diet (hint: anything that raises blood sugar and insulin is not good for cancer, your body or your metabolism). All I know is that my blood work and all other health parameters are pristine, and I'm still losing weight, so the proof is in the sugar-free, grain-free pudding (so to speak, as my pudding eating days are over). I've written extensively about my diet elsewhere on these boards so I won't rehash, but there is so much more info available online. I'm also happy to answer questions by PM.

Heidihill....We all have to make our own decisions....but one thing I know for sure is that most docs know very little about supplements. Its just not part of their curriculum in med school. So the only way they would know about them is if they took the initiative to educate themselves on the subject. Some do but most don't. All Im saying is don't hold you breathe waiting for a conventional doc to recommend supplements. Good luck to all.

Dtad, I am on an AI, not tamox. I was put surgically into menopause in order to take the AI, so it was sudden and severe menopause. I had lost 20-25 pounds between DX and starting the AI. When I started the AI I weighed 117 pounds. This is underweight for my height, so I deliberately gained 5 pounds, making my weight 122. It has stayed there for the last 4 years, and seems to be holding steady. I realize I am just one person, but I have not had a weight problem from it.

Just wanted to add my two cents by telling my story. Three years ago I realized there is something wrong with my digestive system. Primary care doctor tested for h.pylori, prescribed antibiotics, to which I had an unusual reaction: I was shaking as if  from uncontrollable panic attacks constantly, was having constant cramping and  diarrhea, inflamed old hemorrhoids.  Found a psychiatrist -first xanax, then klonopin. Went to GI, got the works but no suggestion of what to do. OBGYN- big fibroids that caused cramping. Found a diet similar to paleo - specific carb diet, stuck to it for three years. Weaned myself from klonopin in 3 month. Used multivitamins from food sources, flax seed fiber, omega 3, added probiotics after a while. Started bikram yoga (gentle sessions, twice a day at home) , walked 1 hour a day, everyday for the last 3 years. After 2 years added digestive enzymes. Gradually got better, even almost got rig of cramping, fibroids seemingly stopped growing. Mammogram was clear two years ago - now DCIS. I thought that three years of eating only home-cooked boiled beef, organic chicken, steamed and raw vegies and lots of greens and yoga would prevent BC and/ or other C. Go figure... And all my life before that I did not put junk food into my mouth, although some additives were hard to avoid. The only wrong thing I did was having one drink after a stressful day and some sweets, not much. Although, I have to admit, I was living 100 km from Chernobyl for 10 years of my young life. Now I'm sitting waiting for my lumpectomy of my left breast,  scared of  what it will reveal. I'm so tired of pushing myself, constantly making an effort to do the right things, to make healthy choices, etc. I cannot even imagine what standard treatment can do to me, if seemingly harmless antibiotics ruined my digestive system. I wanted to walk away from my biopsy and just be free of making choices, but my husband insisted. Now I'm on a conveyer belt for a standard cancer treatment. I feel like they offer me choices none of which I'm qualified to make. Each treatment decision is horribly difficult to make, and does not bring any peace of mind. I cannot choose between a menu of crappy options for which the consequences are unknown.   

Dragonsnake, you can't prevent cancer with just the right diet. There is no "just right" diet. Avoiding certain things may lower your risk of getting cancer, but that is not the same thing as preventing it all together.

Momine, I'm so grateful for your message. Knowing that someone out there reads about what you a going through, and cares, is huge for me. My father asked me not to bother him with my issues, because he had enough of them  already. He said I was destined for it because his aunt had it. Finding a community that cares is huge for me.

Dragonsnake, please keep us posted.

Hello, just my 3 cents (adjusted for inflationary rates)--I didn't gain weight on tamoxifen. I did gain it on Arimidex. And finally I now appear to be able to handle side effects of Aromasin much better so I'm sticking with it. Two points-one of the posts here said that AIs and Tamox were carcinogenic, and I did find that in high doses aromasin (much higher than we ever take) increased incidence of some kinds of endometrial cancer; tamox had a bit of higher risk for uterine cancer. I'm willing to risk that, because tx is all about risk and ultimately what the survivor is willing to accept as treatment and willing to forego.

Second, someone else asked why so many of us take a daily aspirin. I don't know if anyone ever answered that, so here goes, from MD Anderson's website, 11/2014: "The story is much the same for other common cancers. A study of recovering breast cancer patients found those who took a daily aspirin for three to five years were 60% less likely to suffer from a recurrence of the disease. The aspirin swallowers also were 71% less likely to die as a result of breast cancer." Here's the whole link.

https://www.mdanderson.org/publications/focused-on...

I take my daily aspirin--full strength, not a baby one--and my Vit D drops religiously. My oncologist checks my Vit D levels yearly and has since I hired her. We keep them at about 65-67, always close to the high levels.

Claire

Dear Adrift, I think that I've been misunderstood: my point was that my  good diet did not prevent anything. I cannot drop it either - it helps with my leaky gut. I just  cannot afford eating as I did before.  I don't think that there is an alternative treatment for cancer. I'm just mad that modern western medicine is so barbaric: cut it, fry it, poison it. However,  there is no alternative to it. After so much money spent on research virtually nothing have changed. What they actually did - they collected a big number of data  over the years, and they are trying to stratify cohorts according to different parameters (size of the lesion, grade, age of the patient, receptor status, margins after the surgery, etc). The only thing is consistent so far is that the whole-breast radiation reduces the recurrence risk  twofold in each cohort. It may be a decrease from 30 to 15%, or from  4 to 2%. Everything depends on either you feel that dropping the risk from 30 to 15% for you is a significant reduction that is worth fighting for, or you feel that  70% chance of no recurrence is good enough. Some people feel better when they do everything possible and at all costs, some - just let it go. Also, some see no difference between  10 and 15% risk, some fight for 5% reduction forgetting that is just a statistics, which sometime is based on a statistically small number of cases: for example, 200 or even 1000 is not a big number of cases, to my opinion. Also, researchers have access to databases in US, UK, and some   European countries only. I would be interesting to know how many are living with DCIS, and how many develop IBC in places where there is no regular screening, and DCIS is left untouched. But if you decided to participate in the game of screening, then it makes you to follow the cut-fry-poison path. I'm mad that I've chosen to do screening, and not declined it, as my mom did after her pre-menopausal pains in the breasts.  I'm also here sitting with half of my breast removed  to the chest wall, which happened yesterday, waiting for the pathology  results, scared of what the future might hold for me, for not in a million years was I thinking that I'm the one getting breast cancer as I do not have it in my family.

Dear Momine, I read all relevant abstracts and  papers that I could find  through  PubMed. I'm a scientist, and navigating scientific literature is no problem for me. Making a decision on treatment is solving  a multi-parameter problem for me, a problem with may unknowns. Biological systems are not linear, there is no clear cause-effect connection. Knowledge does not bring solace for me. Trusting medical professionals is a problem for me. I have no faith. Doctors say that I'm too much in my head, whatever that means. For some reason, I always end up with the worst scenario realized. Have you ever heard about a Schrodinger's cat? I feel like one. Nature plays dice with human lives.

Dear Solfeo, thank you for your supportive words. Sadly, I cannot discipline my mind to give up negative thoughts. I cannot choose to stop thinking. I do not know how. Most decisions   I made in my life were rational. My lovely father beaten out intuition out of me, literally. Since childhood I was trained to think before I say or do something, even if it was just walking. I do not know how to acquire faith. Since I realized that breast cancer is not curable, this  thought started torturing  me day and night. I also think that where your mind goes your body follows. I just cannot reprogram myself.  I'm poorly equipped for this fight.

Hi dragonsnake. You'll note there was nothing about faith in my post. In fact, you might see me hanging around the atheist thread. I don't do faith. It's not about believing you can have a good outcome without evidence that it is truly possible. The evidence is overwhelmingly in favor of your survival at this stage. It's been said but I'll repeat it with the hope it might sink in: although there is no cure for cancer, there are many women who are effectively cured. More with DCIS than any other initial diagnosis. It's called Stage 0 for a reason. I will venture to say that you are in fact living on faith and "intuition." Faith that only bad things can happen to you because of other negative experiences in your past. It's understandable but not necessarily rational. Not a criticism, because believe me we're all having irrational thoughts around here. Just pointing out that it's no different or any more reliable or predictive than any other faith-based belief.

You don't have to stop thinking. I know that's not possible with my brain, so what I do is try to crowd the bad thoughts out with the good ones. #1 suggestion is stop reading negative stuff about breast cancer. Focus only on things you can do to improve your odds, and then spend time doing those things so you will have less time for negative thinking. #2 maybe consider seeing a professional for cognitive behavioral therapy. It can teach you specific ways to change your thinking. I have been seeing a psychologist since the week after my diagnosis. And I hated therapy after several failed attempts early in life, so you could knock me over that it's actually working for me. And #3 ask for anti-anxiety meds in the meantime to get you over the hump.

This is probably more blunt than I would have normally written, but I'm leaving for my son's graduation in a few minutes and I just wanted to give you something to think about in the meantime. You CAN change. That much I feel comfortable guaranteeing. You just need help finding the right tools to do it.

Best,
Solfeo

With a lumpectomy on Monday, May 23, 2016, dragonsnake is probably awaiting her surgical pathology results and pathological staging, (and naturally is worrying whether the pathology will show something else or not). In the ups and downs, that was one of the hardest times.

BarredOwl