Bottle 'o Tamoxifen

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  • jbokland
    jbokland Member Posts: 890
    edited February 2016

    Ladies,

    I work for a world renowned drug information company, Micromedex (when you Google a drug, thats our information box that pops up on the right). We provide all the evidenced based information to hospital and pharmacies around the globe and I have full access to any of that information. If you ever have a question, just IM me...I am glad to look up any question on drugs, side effects or interactions. The trouble with looking up studies on your own is you have no idea if its a valid or adequate study or written with a self-serving bias.(was the study funded by the drug company?)

    I've researched in our data and there is no concerns or drug interactions with either calcium or turmeric.

    cheers!

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    Thanks much, jbokland. that's very helpful!

  • solfeo
    solfeo Member Posts: 838
    edited February 2016

    Enhancing the bioavailability of tamoxifen is not necessarily a good thing. What the first study posted by Marietje is saying is that there was a higher level of tamoxifen but less of the active metabolite 4-hydroxytamoxifen, because the curcumin interfered with the metabolism process. It is the active metabolites that do the work, not so much the tamoxifen itself. You don't want that kind of inhibition - that is what can reduce the effectiveness of tamoxifen, but it was a rat study and humans don't always metabolize drugs the same way that rats do.

    The 2nd study posted by labelle was in a lab where they directly exposed the cells to the curcumim and tamoxifen, so it's not reliable in terms of how they interact in the human body. It's not going through the metabolism in the liver that the first study looked at, at all.

    Neither study proves anything one way or the other, but if someone says curcumin doesn't interact with tamoxifen at all then they are not fully informed. It is also not accurate to say it has been proven to be safe in combo with tam. Curcumin does inhibit some of the CYP450 enzymes that are responsible for tamoxifen metabolism. That much has been proven. But I've seen other studies that suggest inhibiting CYP3A4 might actually be a good thing with tamoxifen use, so the best you can say is that the evidence conflicts.

    The bottom line is that they just don't know yet.

  • Occovegirl
    Occovegirl Member Posts: 27
    edited February 2016

    Thanks for the info lala1. Etnasgrl many women don't have all the side effect of tamoxifen. I have been on it for 3 months and the side effects come and go. Just started really crazy hot flashes but not everyday and aches and joint pain in mornings mostly.. but I still just keep it moving . some days are great some not but that's life! Good luck hoping you have no problems or side effects! :)

  • Peppin
    Peppin Member Posts: 29
    edited February 2016

    I went through the literature about tamoxifen and curcumin which is found in turmeric. I got concerned that if the availability of functionality of tamoxifen is increased by anything, doesn't that mean that the negative effects - like increased risk of uterine cancer - could also be possibly increasing? If any of you have any insight into this I'd like to hear it.

    I find the foodforbreastcancer website below typically gives information that is based on literature - though I think that in reality there are no population studies on any food interactions with tamoxifen so in reality it is a grey area.

    http://foodforbreastcancer.com/articles/breast-cancer-diet-during-tamoxifen-treatment

    http://foodforbreastcancer.com/foods/turmeric 

    For those who like scientific articles I found this one to be interesting:

    http://www.sciencedirect.com/science/article/pii/S0022286012010642

    Tamoxifen and curcumin binding to serum albumin. A Spectroscopic study. Maciążek-Jurczyk et al, 2012.

    In the presence of curcumin, tamoxifen is less bound to albumin, which would make the tamoxifen more available. But then I ask the same question - doesn't the increased risk of endometrial cancer also increase further?

  • MomOfTwins98
    MomOfTwins98 Member Posts: 69
    edited February 2016

    Why do some of you mix ginger with the turmeric? Flavor? or is it of value? I started the whole thing yesterday and certainly hope it helps with my joint and muscle pain (using it always mixed with black pepper as I read that is a must for absorption)


  • lala1
    lala1 Member Posts: 1,147
    edited February 2016

    I use both because both are considered anti inflammatories which are helpful for arthritis. That's the same type of pain we feel from the Tamoxifen. I will say that I also take magnesium which I've been told can be helpful as well with arthritis. Don't know if that is also contributing to the reduced pain for me.


  • Trvler
    Trvler Member Posts: 3,159
    edited February 2016

    i take magnesium and although I have only been on Tamoxifen for 2 months, I have had no joint paint or stiffness at all.

  • MomOfTwins98
    MomOfTwins98 Member Posts: 69
    edited February 2016

    What type and how much Magnesium? I was at two stores today looking for it, before even seeing your post, and couldn't find it - will go to another after lunch - The Cancer Center here is not big on Magnesium and sort of discouraged it but I want to give it a try - she told me to be careful about the dose

    Lala1 - do you just sprinkle ginger on your food? I mixed it with the Turmeric and black pepper and added to my dinner.


  • Sloan15
    Sloan15 Member Posts: 896
    edited February 2016

    I'm still on 40 mg per day of Tam with no side effects. I questioned my doc about whether ANY study supports 40 mg/day for Stage 1, but he still hasn't sent me any articles. I am going in for a 2nd opinion on Monday. My concern, though is that my CEA levels are elevated at 5.2. I know a few of you said not to worry about that, but I do.... This doc wants to do scans if the level stays above 5. Others say their docs do no scans (except mammos) and no markers unless there is a problem. I feel like I'm being frightened into staying with this doc and doing all the scans "just in case", you know? But the rational side of me knows I'm probably being overtreated. Errr!

  • New-girl
    New-girl Member Posts: 358
    edited February 2016

    I have declined Tamoxifen for over 4 years. I just didn't see the value for the small percentage it was suppose to help me. So now I am back with my second round and awaiting surgery and rads and my dr says to go on it. I picked up the prescription yesterday and was really going to start last night. Then I read the warning:

    "This drug my raise the chance of very bad and sometimes deadly side effects like stroke, blood clots, or endometrial or uterine cancer"

    It goes on the next page over the full page with " It can cause very bad health problems that my not go away, and sometimes death". This is from the pharmacy.

    I didn't take it last night. Woke up very sick this morning throwing up. Glad I didn't take it because I would have definitely thought I was dying.

    How do you jump off the cliff and take it?

  • solfeo
    solfeo Member Posts: 838
    edited February 2016

    Small pilot study in women with breast cancer looks good. They studied hot flashes, but those of us who take it know it works for more than just the hot flashes. Constipation, muscle aches and pains, and probably helps you sleep a little better if you take it at night.

    A pilot phase II trial of magnesium supplements to reduce menopausal hot flashes in breast cancer patients

    In summary, magnesium appears to safely reduce hot flashes with few side effects at minimal cost. A phase III randomized controlled trial is planned to further evaluate effectiveness of magnesium supplementation for hot flash symptoms in a larger patient population, with biologic correlates to determine mechanism of action.

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    You look at the Material Safety Data Sheet (MSDS) or side effects sheet for anything and see the horrific-sounding side effects. This puts it in perspective. Water, for example. Drinking too much can cause psychosis, electrolyte washout, and death. So every morning I look at the Tamoxifen and say, "Thank you, Tamoxifen," and take it with the other medications that I don't worry about so much.

  • MomOfTwins98
    MomOfTwins98 Member Posts: 69
    edited February 2016

    Thats how I feel - Tamoxifen is my defense right now and I,too, say, "please work" every time I swallow it - I think of it like this...I trust my Dr and had a 2nd opinion at Dana Farber. Both gave me my stats WITH taking Tamoxifen and radiation so, I have to trust that they know what they are saying and that this little white pill will help me. I do not feel like there is another choice if I want to do what I need to do - KSusan is right int hat every drug has a long list of possible side effects...when I hear the commercials on tv and they spend most of the time warning you what can happen - my goodness, if that were true for most, no one would take anything.

    I found Magnesium 250Mg so will try it. Thansk all


  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    So here is the Drugs.com info for Tylenol, for example. Many/most of us were told to take Tylenol rather than aspirin or ibubrofen because Tylenol causes fewer potential problems after surgery:

    As well as its needed effects, acetaminophen (the active ingredient contained in Tylenol) may cause unwanted side effects that require medical attention.

    If any of the following side effects occur while taking acetaminophen, check with your doctor immediately:

    Rare
    • Bloody or black, tarry stools
    • bloody or cloudy urine
    • fever with or without chills (not present before treatment and not caused by the condition being treated)
    • pain in the lower back and/or side (severe and/or sharp)
    • pinpoint red spots on the skin
    • skin rash, hives, or itching
    • sore throat (not present before treatment and not caused by the condition being treated)
    • sores, ulcers, or white spots on the lips or in the mouth
    • sudden decrease in the amount of urine
    • unusual bleeding or bruising
    • unusual tiredness or weakness
    • yellow eyes or skin

    If any of the following symptoms of overdose occur while taking acetaminophen, get emergency help immediately:

    Symptoms of overdose
    • Diarrhea
    • increased sweating
    • loss of appetite
    • nausea or vomiting
    • stomach cramps or pain
    • swelling, pain, or tenderness in the upper abdomen or stomach area

    For Healthcare Professionals

    Applies to acetaminophen: compounding powder, intravenous solution, oral capsule, oral granule effervescent, oral liquid, oral powder for reconstitution, oral suspension, oral tablet, oral tablet chewable, oral tablet disintegrating, oral tablet extended release, rectal suppository

    General

    In general, acetaminophen (the active ingredient contained in Tylenol) is well-tolerated when administered in therapeutic doses.[Ref]

    Hepatic

    Alcoholic patients may develop hepatotoxicity after even modest doses of acetaminophen (the active ingredient contained in Tylenol) In healthy patients, approximately 15 grams of acetaminophen is necessary to deplete liver glutathione stores by 70% in a 70 kg person. However, hepatotoxicity has been reported following smaller doses. Glutathione concentrations may be repleted by the antidote N-acetylcysteine. One case report has suggested that hypothermia may also be beneficial in decreasing liver damage during overdose.

    In a recent retrospective study of 306 patients admitted for acetaminophen overdose, 6.9% had severe liver injury but all recovered. None of the 306 patients died.

    A 19-year-old female developed hepatotoxicity, reactive plasmacytosis and agranulocytosis followed by a leukemoid reaction after acute acetaminophen toxicity.[Ref]

    Hepatic side effects including severe and sometimes fatal dose dependent hepatitis have been reported in alcoholic patients. Hepatotoxicity has been increased during fasting. Several cases of hepatotoxicity from chronic acetaminophen therapy at therapeutic doses have also been reported despite a lack of risk factors for toxicity.[Ref]

    Gastrointestinal

    One study has suggested that acetaminophen (the active ingredient contained in Tylenol) may precipitate acute biliary pain and cholestasis. The mechanism of this effect may be related to inhibition of prostaglandin and alterations in the regulation of the sphincter of Oddi.[Ref]

    Gastrointestinal side effects have included nausea (34%) and vomiting (15%). Cases of acute pancreatitis have been reported rarely.[Ref]

    Renal

    Renal side effects are rare and have included acute renal failure, acute tubular necrosis, and interstitial nephritis. Adverse renal effects are most often observed after overdose, after chronic abuse (often with multiple analgesics), or in association with acetaminophen-related hepatotoxicity.[Ref]

    Acute tubular necrosis usually occurs in conjunction with liver failure, but has been observed as an isolated finding in rare cases. A possible increase in the risk of renal cell carcinoma has been associated with chronic acetaminophen use as well.

    One case-control study of patients with end-stage renal disease suggested that long term consumption of acetaminophen may significantly increase the risk of end-stage renal disease particularly in patients taking more than two pills per day.

    However, a recent cohort study of analgesia use of initially healthy men concluded that moderate use of analgesics including acetaminophen was not associated with increased risk of renal disease.[Ref]

    Hypersensitivity

    Hypersensitivity side effects including anaphylaxis and fixed drug eruptions have been reported rarely in association with acetaminophen (the active ingredient contained in Tylenol) use.[Ref]

    Hematologic

    Hematologic side effects including rare cases of thrombocytopenia associated with acetaminophen (the active ingredient contained in Tylenol) have been reported. Acute thrombocytopenia has also been reported as having been caused by sensitivity to acetaminophen glucuronide, the major metabolite of acetaminophen. Methemoglobinemia with resulting cyanosis has been observed in the setting of acute overdose.[Ref]

    Dermatologic

    Dermatologic side effects including erythematous skin rashes associated with acetaminophen (the active ingredient contained in Tylenol) have been reported, but are rare. Acetaminophen associated bullous erythema and purpura fulminans have been reported. One case of toxic epidermal necrolysis associated with acetaminophen administered to a pediatric patient has been reported. Dermatologic side effects associated with IV acetaminophen have included infusion site pain and peripheral edema.
    Very rare potentially fatal skin reactions: Stevens-Johnson syndrome (SJS), toxic epidermal necrolysis (TEN), and acute generalized exanthematous pustulosis (AGEP).[Ref]

    Respiratory

    Respiratory side effects have included dyspnea and a case of acetaminophen-induced eosinophilic pneumonia.[Ref]

    Cardiovascular

    Two cases hypotension have been reported following the administration of acetaminophen (the active ingredient contained in Tylenol) Both patients experienced significant decreases in blood pressure. One of the two patients required pressor agents to maintain adequate mean arterial pressures. Neither episode was associated with symptoms of anaphylaxis. Neither patient was rechallenged after resolution of the initial episode.[Ref]

    Cardiovascular side effects including hypertension and hypotension have been reported following the administration of acetaminophen.[Ref]

    Metabolic

    Metabolic side effects have included hypokalemia. Metabolic side effects including metabolic acidosis have been reported following a massive overdose of acetaminophen (the active ingredient contained in Tylenol) [Ref]

    In the case of metabolic acidosis, causality is uncertain as more than one drug was ingested. The case of metabolic acidosis followed the ingestion of 75 grams of acetaminophen, 1.95 grams of aspirin, and a small amount of a liquid household cleaner. The patient also had a history of seizures which the authors reported may have contributed to an increased lactate level indicative of metabolic acidosis.[Ref]

    Nervous system

    Nervous system side effects associated with IV acetaminophen (the active ingredient contained in Tylenol) have included headache (10%), insomnia (7%), and fatigue.

    Musculoskeletal

    Musculoskeletal side effects associated with acetaminophen (the active ingredient contained in Tylenol) IV have included muscle spasms and trismus.

    Psychiatric

    Psychiatric side effects associated with acetaminophen (the active ingredient contained in Tylenol) IV have included anxiety.

    References

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    4. Gursoy M, Haznedaroglu IC, Celik I, Sayinalp N, Ozcebe OI, Dundar SV "Agranulocytosis, plasmacytosis, and thrombocytosis followed by a leukemoid reaction due to acute acetaminophen toxicity." Ann Pharmacother 30 (1996): 762-5

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  • superius
    superius Member Posts: 340
    edited February 2016

    New-girl: Not everyone would get every side effect. Has your MO explain to you which side effects might more common, for you?

    My MO listed all the signs one should watch out generally. But since I had Chemo, I saw her every 3 weeks & did blood test before each round, from that she can kinda predicted how my body reacts to the medicine. So from that list, she said most likely Hot Flashes & vaginal discharge. Watch out for abnormal bleeding or heavy period. She actually think my period would come back after couple month after Chemo (hasn't happened). Well... except the period part, she's pretty right on target.

  • lala1
    lala1 Member Posts: 1,147
    edited February 2016

    MomofTwins--I take ginger in capsule form as well. My turmeric is Gaia brand which is made in NC and includes the black pepper as well. I buy my magnesium at Vitamin Shoppe. I take magnesium glycinate 400....200 mg in am and 200 in pm. My doc said to take as much as I can take without causing diarrhea but no more than 450-500mg a day. This dose keeps me regular, minimizes my hot flashes and seems to help with joint pain as well.

    Newgirl--- "How do you jump off the cliff and take it?" I'm more of the "How do you not?" I was nervous to take Tamoxifen but knowing it reduced my BC risk by 50% made me pretty quick to jump on the bandwagon! I knew that if I didn't take it and BC came back, I'd never be able to live with myself. And knowing that I could quit it if I wanted made it easier. Maybe you could give it a go knowing there are other options if it's just too much. And you may be one of the many many people who do just fine on it. I think you might find you are one of those. You said "How do you jump off the cliff and take it?" I'm more of the "How do you not?"We all have different ways of seeing things and justifying things in our minds. One woman may find the idea of researching BC to be scary while another may find it comforting. Same thing with whether you want to hear exactly what a doctor is going to do to you in surgery. Perfect example for me....my sister, stupidly, still won't go get a mammogram because she says it didn't catch my BC or any of her friends. We found them through self exam so she figures she'll get by with that. She says "Well, you had a mammogram 6 months before you found the lump and it didn't catch the lump so why bother?!" My way of looking at that is that once I found the lump and was diagnosed I was comforted by the idea that maybe my lump was less than 6 months old. I figured if a mammogram didn't see it, then it must not have been there so since it's younger that 6 months, maybe it won't be a "bad" type. Mine did turn out to be small and I didn't need chemo or rads so that was good. Nipples and nip tats are another example. I love my recon nip and tattooed areola. When I pass a mirror and give a quick glance, I look and feel whole. Others may not care about that or want another surgery or whatever. As to Tamoxifen, do what makes you most comfortable. My newly diagnosed friend is declining it. She doesn't want the side effects and says she's ok with the risk of it coming back. I was the opposite way. My doc told me the risks percentages and benefit percentages and I knew I had to give it a try. And I was even one of the ones who got a thickened endometrial lining from it and had a total hysterectomy a year ago. And today I feel awesome!

  • stage1
    stage1 Member Posts: 475
    edited February 2016

    lala1, tell your sister that there are kinds of cancer that are not lumps. I had microscopic calcifications found on my mammogram. It was grade 3. When I was told I had cancer, radiologist said to hurry in for treatment with the kind of cells that were found. If I had skipped my mammo for just one year, I don't think I would be alive.

  • Suzanne50
    Suzanne50 Member Posts: 280
    edited February 2016

    Hi Sloan - I was just thinking of you today and wondering about your 2nd opinion. Please let me know how it goes as I am very curious about this 40 mg vs 20 mg.

    I am just wrapping up my 2nd month on Tamoxifen and I have to say that I don't have any side effects except for night sweats and I had them before I started.

  • labelle
    labelle Member Posts: 721
    edited February 2016

    New-Girl it took me a year to talk myself into taking Tamoxifen. Like you, I wasn't terribly concerned about the common and annoying side effects that we can feel, the ones everyone says you can always quit if they are intolerable, but with the quiet and potentially deadly ones like endo cancers and blood clots, the ones addressed with the "This drug my raise the chance of very bad and sometimes deadly side effects like stroke, blood clots, or endometrial or uterine cancer" warning inside the package. Yikes! I really wished I hadn't read that part either, LOL!

    Even though I definitely didn't want to deal w BC again and the odds are in my favor either with or without this drug that I never will have to, in the end I made a sort of peace with this and took the plunge. Some of the things that helped me are having a gyno who is willing to monitor me closely - we've set me up w transvaginal ultrasounds every 3 months-not fun, but not painful and very necessary for my own peace of mind. I am no longer am chained to a desk job and since I don't smoke anymore (smoke free for over a year now) or have to sit for long periods of time at work and because I do exercise regularly now, plus take aspirin each day per my OC, I've convinced myself that my personal risk for blood clots is low, or as low as I can get it.

    The other SEs (many and varied) are not life threatening, certainly not experienced by all and can sometimes be handled with supplements, other prescription drugs, diet, exercise. etc.

    I doubt anyone was more hesitant to take this drug than I was. For me being able to take it required getting the monitoring that makes me comfortable with this choice per my gyno and being proactive in preventing blood clots. Once I got these in place, I felt pretty confident I could deal with the less concerning (not life threatening), yet pretty crappy side effects. So far these have been few and minor for me and definitely manageable. Talking to your gyno and adopting a proactive stance might be some things you can do to help you with the fears you have about taking this drug.

  • Occovegirl
    Occovegirl Member Posts: 27
    edited February 2016

    Hi New Girl

    I started my tamoxifen 3 months ago. I had really minor side effects til now. But my mo Said in time they will subside. Hopefully. I truly feel that not taking tamoxifen is not an option for me. I have to much life to live. Please consider trying tamoxifen. I encountered many women in radiation that were back because they stopped taking tamoxifen. Good luck and fight on!! :)

  • TeamKim
    TeamKim Member Posts: 568
    edited February 2016

    Hey everyone -- Add me to the Tumeric/Ginger bandwagon! I started taking a supplement called Deep Blue, twice a day which contains: Frankincense, Tumeric, Ginger, Grape Seed extract, Peppermint, Green Tea, Pomegranate Fruit extract and caraway seed extract. I started taking it 4 days ago at the advice of a friend who is into essential oils, and it seems to be helping a lot. Thanks for suggesting the Tumeric and Ginger, since that got me exploring something to take along those lines! So far, so good!

  • superius
    superius Member Posts: 340
    edited February 2016

    I am trying to find information about Tamoxifen & raised Blood Sugar. I had lab last Friday & the A1C raised 0.6 points, to 7.5! Of course I'm still catching up with going back to regular exercise routine after chemo & Christmas (church musician, supper busy). And I was eating all meals at home during chemo, more carbs (I ate more veggie etc at work).

    Also how about BP? My MO said no... but it was raised mid Dec at my surgeon's office & in jan when I had the Echo.

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2016

    My A1c has been the same as before on Tamoxifen.

  • lala1
    lala1 Member Posts: 1,147
    edited February 2016

    TeamKim--Make sure your MO is ok with you taking the Deep Blue. It has grapefruit seed extract in it which is contraindicated with Tamoxifen. Maybe ask if the amount is small enough. I am using something called CitriDrops which I add to my saline nasal rinse for allergies. It has GSE in it so I had to check with my MO. He was ok with me using it because i only use a couple of drops and he said that amount wouldn't effect Tamoxifen. I see the Deep Blue has 50mg but I have no idea if that is considered a large or small amount.

  • MomOfTwins98
    MomOfTwins98 Member Posts: 69
    edited February 2016

    Lala1 - Thank you - Just ordered my Magnesium Glycinate from Vitamin Shoppe - did so much research...goodness, so many kinds of Magnesium who knew? - Had bought another kind yesterday at a local big box store but will switch when the is order arrives -


  • Scottiemom11
    Scottiemom11 Member Posts: 1,298
    edited February 2016

    For what it's worth, I use magnesium citrate which is suppose to absorb better. I have had some muscle spasms and the mag citrate definitely helps. I am trying turmeric but will need to check with MO for long term.

    Scottie

  • New-girl
    New-girl Member Posts: 358
    edited February 2016

    Thanks everyone. I am slowly accepting the fact I will be taking it. Just need to decide when. Maybe I will start tonight.



  • lala1
    lala1 Member Posts: 1,147
    edited February 2016

    Here is an article that talks about the different types of magnesium. Glycinate and citrate both are well absorbed. Citrate has more of a laxative effect (which can be a good thing!) and glycinate seems to help the muscle pain more.

    Understanding Different Types of Magnesium | Dr Nibber

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