List of all of the Side Effects I deal with that wreak my QOL

Options
1…45679

Comments

  • macb04
    macb04 Member Posts: 1,433
    edited May 2020

    I am really having much more achiness in the past month than I had been having. Kind of weird. No changes in anything I can think of.

    · Share on FacebookShare on Twitter
  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited May 2020

    MACB04, strange but I have been having aches and pains more then usual in the last week or so. Do you use any AI treatments?

    · Share on FacebookShare on Twitter
  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited May 2020

    Macb04, I read on this thread that you are taking Thorne curcumin with meriva for pain. I have a lot of pain in my hips and was told by my orthopedic doctor that I will probably need a hip replacement in a few years. Of course the neither the arimidex nor the prolia shots for osteoporosis are helping my pain issue any. The doctor told me that there is a lot of inflammation, so I have been thinking of trying the curcumin. I am wondering if Thorne is the only brand you have tried? It's so expensive, and I'm wondering if any of the other brands with meriva are effective (Now, Doctor's Best, etc.).

    · Share on FacebookShare on Twitter
  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited May 2020

    I have bought a large bag of organic turmeric powder used for cooking and I make tea :)). I am not sure if it works the same as turmeric pills but it is way cheaper.

    · Share on FacebookShare on Twitter
  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2020

    Curcumin is wonderful stuff. I had inflammation and aching hips BEFORE cancer and getting on curcumin (I take Theracumin by integrative Pharmeceuticals) has gotten rid of that. I take 2000-3000 mg twice a day

    It is a blood thinner a a high dose, be aware of that....

    · Share on FacebookShare on Twitter
  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited May 2020

    Ladies, I want to ask you a question. I have been in letrozole for 6 months now and the recent blood test showed high levels of calcium in blood. In beginning of the month, one side of my neck got also swollen. I checked online and high levels of calcium and enlarged parathyroid glands have some connection. Do you have any experience like this? What can it be? I am getting worried.

    · Share on FacebookShare on Twitter
  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2020

    there's a whole thread on the parathyroid connection somewhere

    · Share on FacebookShare on Twitter
  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited May 2020

    I make my own mixture. 2 parts turmeric powder, 1 part ginger powder, 1 part cinnamon powder, and a pinch of black pepper (all organic ingredients). Mix it up well. I take two tablespoons of that mixed in a bit of water every morning. It doesn't taste good but it's the cheapest way!.

    · Share on FacebookShare on Twitter
  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited May 2020

    Thank you for the responses about the curcumin. I don't think I could take it in a glass of water, even if it is cheaper. I bought some tumeric to use as a spice, but I'm not too crazy about the taste. A good friend of mine recommended Curamed by Terry Naturally but it's pretty pricey too. I think the Theracumin might be a little better price-wise. I would honestly not mind paying for something if it helped these stupid aches and pains, but don't want to pay more than is necessary to get the job done (I'm already paying quite a bit for other supplements). There's so many formulations that it's difficult to decide on one.

    · Share on FacebookShare on Twitter
  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited May 2020
    Thanks, Lori! I don’t do well swallowing pills so mixing the powders is a great idea. And no fillers!
    · Share on FacebookShare on Twitter
  • Togethertolearn
    Togethertolearn Member Posts: 278
    edited May 2020

    I've been off tamoxifen for 1.5 months after trying it again, and I am extremely sensitive to noises now! I already left the room twice today in my house of noise that used to seem fine. I hate it. Also I keep forgetting words, like I'll be talking and know what I am thinking but can't find the word. I had that same word forgetting thing in October - November before I stopped tamoxifen the first time, so Imexasperated the word forgetting has popped up after being off it for over a month.

    · Share on FacebookShare on Twitter
  • whitelight-
    whitelight- Member Posts: 49
    edited June 2020

    I am so sorry and so sad for you.

    I read a thread like this once which was of ex soldiers from the 1st Iraq slaughter who had been experimented on by Big Pharma.

    Try finding them, ex soldiers who were given so many poisons, they do have some very good detox recipes. I no longer have any links I am afraid.


    · Share on FacebookShare on Twitter
  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited June 2020

    whatjusthappened - you might try L-O-R-I's recipee with food such as rice ( I couldn't drink it either in water). I use turmeric/pepper/ginger in food all the time. Also take a pricey GAIA supplement. I've really varied in how much I use. 1/4 tsp seems ok, but when I take1/2 tsp -1 tsp in a single meal is a little stressful on the bladder.

    TogetherToLearn - heard an interesting interview on the use of pyschedelics and PTSD, that some of them seem very promising, but very hard/impossible to get legally, or guidence in how to use. Michael Pollen's book "How to Change your Mind" . Psycheldelics were being explored for positive use in mental well being until "tune in, turn on, drop out" scared everyone.

    · Share on FacebookShare on Twitter
  • abigailj
    abigailj Member Posts: 145
    edited June 2020

    The only side effects I had were bad hair loss which really upset me and a little bit of body aches from taking Anastrazole during the postponement of my BMX due to Covid - I had it earlier this week with immediate DIEP reconand just learned today pathology of all tissues outside the known cancer sites in both breasts is negative. However because of all the information I learned on this thread from so many of you who took the time to share, I at least felt armed with the power of knowledge if I hadn’t gotten lucky with today’s pathology report so thank you so much for that

    · Share on FacebookShare on Twitter
  • macb04
    macb04 Member Posts: 1,433
    edited July 2020

    Hi All. I was gone off the thread, BCO in general for a couple months. Popped back in because seemed like no activity, and saw all these posts.

    Seems like I am not getting email notifications of postings for some reason.

    So WhatJust Happened, I just Love Meriva Curcumin by Thorne Research. Jarrow also does a Meriva version of Curcumin as well. I also recommend Boswelia ( Literally Frankincense like in the Bible) It is also a marvelous Anti inflammatory. I also take Vitamin D3 5,000IU per day along with Vitamin K2 ( mk-4 type) and Magnesium Complex.( Not Magnesium Oxide, pretty useless)

    Many people don’t realize that without sufficient Magnesium, it is almost impossible to maintain adequate levels of Vitamin D, even with supplements. A recent study said almost 50% of Americans are Magnesium Deficient. Only a specific blood test called an RBC Magnesium will accurately pick up a Magnesium deficiency, as 96% of Magnesium is kept in soft tissue spaces, not in serum.

    The Bad side effect of too much Vitamin D, without the necessary counterbalance of Magnesium and Vitamin K2 is ELEVATED SERUM CALCIUM LEVELS!!! This also leads to an elevated Cardiac Calcium Score/ Arterial Calcification/ Aortic Calcification, increased risks of Heart Attacks, Strokes and Osteoporosis.

    I will attach some of the scores of available research supporting this info tomorrow as I have to go.


    · Share on FacebookShare on Twitter
  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2020

    macb04 - please post links you have for RBC Magnesium blood test. Problems with insufficient Mg and "too much" vitamins D with K. I take all as supplements, preferring Mg glycinate. since I get blood test for Ibrance every 3 weeks, I'd like to request the Mg test you mentioned. It might be that I have to pay for it if it cannot be justified as part of Ibrance testing. But maybe I could get as part of wellness check in sept?

    · Share on FacebookShare on Twitter
  • macb04
    macb04 Member Posts: 1,433
    edited July 2020

    Hey BlueGirlRedState, I also like MgGlycinate. I actually take a Mg Complex by Genestra because it has several very bio available types.

    I kind of doubt you would be deficient in Mg if you take it daily. That's available for order online through a Lab vendor that then sends your lab order to a major lab company like Quest or LabCorp. Like I said, doubt you are deficient, so you may not need the test.

    More important would be a Vitamin D blood test. The range is 30 to 100mg/dL. Optimal levels, especially with a history of BC, Diabetes, Depression or other Chronic Health concerns would be 50 to 70 mg/dL. Most doctors say they are happy if your Vitamin D level is 30, but I always think, “ Do you want barely surviving, or Optimal?" So for me, I go for at least 50mg/dL on my Vitamin D.

    As you probably already know, there are 2 different types of Vitamin K, K1 which is mainly involved in blood clotting, and Vitamin K2 which lowers risks of Heart Disease and Osteoporosis through its actions on Calcium. Then there are several types of Vitamin K2, with MK-4 and MK-7 being the main ones discussed in the research. I also eat Gouda Cheeses and other food sources of Vitamin K2.

    There is no real standard for Vitamin K2 except the daily “Adequate Intake" ( AI) The AI for Vitamin K2 in the US is 120 micrograms. Also important to know is there is no upward level of Vitamin K2 toxicity level ever noted. In Japan, Vitamin K2 is given, sometimes for years, as a treatment for Osteoporosis, usually in doses of 45,000 micrograms PER DAY. ( And no, that is not a typo. Forty five thousand micrograms per day)

    I have myself taken that dose safely for the past three years, with zero side effects, under the guidance of my Naturopath, because my mom had osteoporosis.


    Do standard blood tests check magnesium?A Magnesium RBC test can provide an earlier indicator of Magnesiumdeficiency than a standard Magnesium blood test. When levels are low, the body will pull Magnesium from the cells to keep blood levels normal.imageRequest A Test › magnesium-rbc-tes...

    Magnesium RBC Blood Test - Request A Test

    · Share on FacebookShare on Twitter
  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2020

    macb04 - thank you for the reply. About 3 or 4 years ago I did get my D levels checked. They were on the low side of acceptable, even though I was taking 1,000, and DR suggested I take a higher dose. 2,000 did not boost it much, so I went to 5,000. The D level went to the high side of normal range. That summer I dropped to 2,000 again since I was in the sun so much (but with sun screen, sleeves, often a hat). D levels went down. So I went back to 5,000. Only recently started using D/K combo.

    · Share on FacebookShare on Twitter
  • macb04
    macb04 Member Posts: 1,433
    edited July 2020

    BlueGirlRedState, I saw a study looking at Vitamin D levels on children in Lebanon, in the Middle East. Lots of sun, but they were still deficient in Vitamin D. Factors like long sleeves /head coverings and going out later in the day to skip the worst of the heat, negated the fact that they were practically on the Equator, in terms of sun availability.

    My Doctor ALWAYS says take 3,000 to 5,000IU per day of Vitamin D3. And make sure to have plenty of Magnesium rich foods daily like pumpkin seeds/ nuts and avocado

    · Share on FacebookShare on Twitter
  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited July 2020

    Thank you macb04, I will definitely be trying the meriva curcumin just as soon as it's safe to do so (had reconstruction done yesterday). I have definitely seen an increase in aches and pains having to go off some of my supplements in preparation for surgery, so that was good evidence that supplements do work. I also take 5000 IU of vit D daily, and have an order to get that tested at my next lab draw. I have never gotten it into the normal range so far as I've seen at 2000 IU daily.

    · Share on FacebookShare on Twitter
  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited July 2020

    avacado-cucumber soup tonight. Much better than those supplements for Mg

    · Share on FacebookShare on Twitter
  • macb04
    macb04 Member Posts: 1,433
    edited July 2020

    BlueGirlRedState, maybe try a liquid formulation of Vitamin D? Like Carlson or by Thorne Research ? Liquid types of Vitamin D can have much better absorption. And take with your highest fat meal of the day to increase absorption.

    · Share on FacebookShare on Twitter
  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited July 2020

    mab04, thanks for mentioning vitamin D with highest meal of the day. I didn't know. I was taking it with my morning coffee :). I use liquid form of pure encapsulations. I don't know what to get for joint pain, fish oil, turmeric? They are not working as well.

    · Share on FacebookShare on Twitter
  • macb04
    macb04 Member Posts: 1,433
    edited July 2020

    I take a Meriva type of Curcumin, two capsules twice per day. And if sore more than usual, take some Boswellia ( which is Frankincense, weirdly enough) and some Wobenzym.

    · Share on FacebookShare on Twitter
  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited August 2020

    So, a little update on the Vit D discussion. I've always been low in the past. The last time I had my level tested, my level was around 24. I've been taking 5000 IU per day since then and just had my level tested again. My level was now 100, which my doctor said was too high. My doctor told me to quit taking the supplements. I'm thinking of just dropping them down though. Has anyone else has their level go up that much with supplements?

    · Share on FacebookShare on Twitter
  • flashlight
    flashlight Member Posts: 698
    edited August 2020

    Whatjusthappened, Did you also have a CMP done to check your calcium level? I think you can go as high as 125, but you have to be careful because it can damage your kidneys. I have been taking K2 with VitD3. I was at 33 and now a year later at 56. I am going to take it every other day. If you find you are urinating more frequently I would consider taking a break from it. What did your doctor say to do?

    · Share on FacebookShare on Twitter
  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2020

    I was taking 7000 IU during/after chemo. Over the last 4 years I've dropped it down to 3000. I get blood tests every 6 months & my numbers stay around 50 +/- depending on how much I'm outside soaking up sun.

    · Share on FacebookShare on Twitter
  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited August 2020

    flashlight, I have had a couple of recent CMP's but I haven't really seen the results. I would've thought that I would've been notified if my calcium was high though. I have a Prolia injection next week and they always check my calcium levels so I'll know for sure then. My GP told me to take a break from the vit d but I'm just going to drop my vit d dosage down for now. I like to take vit d and k2 with my calcium to help with absorption.

    MinusTwo, I think 3000 seems like a good dosage- 5000 might have been a bit much for me. I forgot that my calcium pills have added vit d as well, so I've been taking closer to 6000.

    · Share on FacebookShare on Twitter
  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited August 2020

    whatjusthappened - I started at 1000 and increased to 2000. Testing showed I was on low end of normal range, Oncologist suggested I increase. Went to 5,000. Next test showed me on high end of normal. Did this for about a year, dropped to 2000 with summer. Outside a lot, but wore sleeves, pants, hat, sunblock most times. D went down, so went back to 5,000. Dose needed probably varies with individual, where they live (I'm at about 44 degrees latitude), diet, how much times outdoors, what they wear, use of sunblock etc

    · Share on FacebookShare on Twitter
  • Whatjusthappened
    Whatjusthappened Member Posts: 283
    edited August 2020

    BlueGirl, that makes sense. I got a lot of sun this summer, though not so much in the past month. I'll have to play around with the dosage and see if I can get my level where I want it. I would rather be on the high side than low, but don't want want kidney problems either.

    · Share on FacebookShare on Twitter

Categories