Bottle o Tamoxifen
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acaligirl- I started tamoxifen April 1-only side effects so far are a bit of brain fog early on, night vertigo (had before Tamo) and hot flashes. No weight change but it's only been a month, MO said to notify him if weight loss of over a couple of pounds
Discussions and my readings have pointed to Tumeric to help with the joint pain. I take magnesium to help with hot flashes that are getting better as time goes by.
Hope some help, hugs
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amylsp- I was 47 when I was diagnosed and nowhere near menopause (chemo quickly changed that!). I'm now 49 and just had a hysterectomy and BSO this past Thursday. My oncologist wanted me to do this and then continue with the tamoxifen for 4 more years. BTW, if it's any consolation, ladies, this recovery/pain is sooooo much better than the mastectomy!
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Hi acaligirl,
I saw your post about being 46 going on 80 and I had to write. I, too, am 46 and active and had ALL the symptoms you shared in your post! I dealt with it for several years until finally my oncologist switched me to Fareston. Wow, what a difference! I'm not 100%, but I am so much better! You may want to talk to your oncologist about Fareston.
Hope this helps!
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Hi, NWArtLady, thank you for your reply and letting me know about Fareston. I'm not sure what your diagnosis was but my Oncologist seems pretty set on keeping me on Tamoxifen. You can see my DX and I also have a very strong family history of BC. I lost my mom, my maternal grandma and an paternal aunt to BC and I know there were woman on my dad's side. I will ask her what her feelings are re: Tamoxifen and trying a new med. I see her next Monday for another 6 mo follow up and will mention this to her and see what she says.
As a side note, I love WA and hopefully in the next few years my husband and I will be moving up to Spokane! Thank you again for your reply.
Mm68 and NWArtLady .... I haven't had many good experiences on this website or many responses. A while back, one lady made me feel horrible because I was writing about my anxiety about my cancer coming back and future follow ups. Like I shouldn't have been worried because of my DX. I realize my cancer isn't as bad as what others have but it is still cancer and my experience(s). Anyone who has had cancer knows it can be fickle. Just because you have a low end cancer doesn't mean it will not come back, just as having a more aggressive cancer may never return. So thank you for your kindness and support!! For that I will try sticking around again :-)
Blessings and Hugs to you both :-)
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Aciagirl, so sorry you had that experience on this site. There are some threads, yes and even some users I steer clear of specifically for the reasons you state. However I do have a few threads where it is like family. With this said hopefully you will find this thread friendly and supportive and welcoming. I have only been on Tamoxifen for 4 weeks so seeking more answers than being able to give advice. Hopefully you will stick a around to share your experiences and offer support to those like me who are coming behind you.
Best wishes on your follow-up with your MO.
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Question, have you ladies experience any heart pain? I have been have this pain on the left side (side of cancer) and sometimes it feels like it is the heart and other times it feels like a pain on the mastectomy scar. I had radiation and had to do abc method because of the heart position. I think that my heart might have sustained some damage but I am wondering if this is due to tamoxifen.
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ladyb1234,
Thank you very much for your reply and support. I know there will always be people like that and it stinks because we are all women and all in this together, no matter what your DX!! As you stated, I was hoping to find that type of support and welcoming on this site so I will give it another try. I appreciate your comments very much and would be happy to share my experiences with others to help them. I really believe that until you have your OWN experience with BC, it is impossible for others to totally understand the fears, etc. Even though I watched my grandma go through it and cared for my own mother for 4-5 years, it was still different when it happened to me. Yes, family and friends try to be supportive but no one can really "get it" and at times I find it difficult to discuss with others because nobody understands what it is like and what we experience. This is why I had hoped this website would let me connect with other women who I could turn to instead.
When I was first DX'd with BC, I was stunned and also very afraid of the procedures I would face with the treatment plan I decided on. I was 43 yrs old and had never even had a surgery up to this point in my life. So, facing a biopsy, BM, reconstruction (R & L side) and hysterectomy, I was beyond terrified. However, the fear of dying young was stronger and that along with knowing I wasn't alone in this, really helped me start the process. I did a lot of reading, stories of women before me, who went through these procedures and their experiences. The advice they gave was so helpful to get through surgeries, healing, etc. I know how much it helped me so I can only hope our experiences can help someone else as well.
As always, I am starting to get anxiety about my doctor visit. Not so much the visit, because I don't think there are any changes to worry about, its the days following the blood tests, praying all is well and not hearing from my doctor. Once I get past that point, I feel like I have been granted another 6 months of being able to live anxiety free. I don't stress every day anymore and have learned to control my fears, but I do allow myself 2 weeks out of the year to go through this roller coaster of anxiety.
Thank you for the well wishes - I will be here and will be happy to support women any way I can.
Blessings to you ladyb1234 :-)
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acaligirl---I started Tamoxifen Feb 2013 so have been on it for about 27 months. My first significant SE was muscle/joint pain, mostly at night while sleeping. I tried Osteo BiFlex to no avail so found a holistic breast doctor who turned me on to Gaia turmeric and ginger and SloMag magnesium. All 3 have been a godsend! Within 2 weeks I was 90% pain free. I took 1 turmeric, 1 ginger and 2 SloMag a day along with my other supplements. I stay pain free for well over a year. Then in Jan of this year I also had a total hysterectomy including ovaries thanks to the lovely Tamoxifen messing with my lady bits. I started having hot flashes for the first time about a month after surgery. I added 1 SloMag to my regimen which did seem to help. (Keep in mind my HF weren't that bad....rarely during the day and usually 4 or 5 at night and none of them "house on fire" type!) Then at about month 2 I started getting pretty bad leg pains again (menopause will do that to you!) so I added 1 turmeric and 1 ginger to my routine. Within about 3 days, pain was gone! I'm sticking with this regimen for now since it's working so well. I've got my pains mostly gone and with added turmeric and magnesium, both of which are known to help with hot flashes, I've got my hot flashes down to 2 or 3 a night. However, I've started having 1 or 2 during the day so I talked with my doctor and I'm going to try something called Peridin-C which he said he's had alot of luck with. My MO had never heard of it so he researched it for me and said it's fine to take with Tamoxifen. Cross your fingers that this helps! I'll let you know. In the meantime look into the turmeric, ginger and magnesium. My holistic doc said to take the Gaia brand turmeric and the SloMag brand magnesium and any decent ginger will do. Hope this helps!
By the way, I was told SEs from Tamoxifen show up in the first couple of months then subside over the first year. Whatever you have then is what you'll have for the time you take it. I find this is not true! Most people I've talked with continue to have SEs come and go at random. I developed nausea and dizziness after a year which then subsided after another year. And my hair and nails will grow like crazy for a few months then not at all for a few months. It's so crazy! Anyone else find this to be true?
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lala1 -- So does your Oncologist say it is OK to take the supplements along with Tamoxifen? I am not sure what my Oncologist would say but I am going to ask her next week and will mention the Tumeric, Ginger and Slomag. Don't those things help aid with inflammation? She did have me start taking a low dose of Glucosamine/Chondroiton but I don't think it is helping. I think now that the weather is getting warmer, that is helping as the cool, damp weather seems to make the aches and stiffness worse - just like arthritis. I have ready that removal of the ovaries can cause joint and muscle pains (Menopausal Arthralgia)?? My Oncologist is 2 hours from where I live now. I stayed with her because I think she is compassionate, knowledgeable and has been good at addressing my concerns, etc. So I always try to arm myself with everything to discuss during my visits.
I was taking Gabapentin for HF's but felt they didn't do much and only seemed to cause more water retention so I stopped taking it 6 months ago. Now that I am almost 2 years out from my total hysterectomy and the HF's seem to be slowing down and and in intensity, I believe the HF's were more from surgical menopause than Tamox. As you stated, my SE's have constantly been changing over these past 3 years on tamox. I seem to have settled into these aches and pains that come and go. I guess we have to adjust our treatments as the SE's change. Again, I know there are women who have had it way worse than myself so I consider myself fortunate.
I have to agree with you on the SE's coming, going and changing. I thought my BM was going to be horrible and it really wasn't bad at all (the drains were the worst) compared to all the things my hysterectomy changed. I knew there would be some big changes after that surgery, bu t I had no idea of all the things estrogen aided in our bodies. So that surgery has been the most difficult thing to deal with along with all the many side effects. I could write a paragraph on all the things going on!
I haven't noticed anything re: hair and nails. Thank you lala1! I will discuss this with my Oncologist next week :-)
Lolis, I haven't noticed any heart/chest pain!
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acaligirl
You should never have to apologize about worrying for the future. We wouldn't be on this board or others talking about side effects from our meds, procedures etc if we weren't doing all this to hopefully stop recurrence. I don't sleep many nights because of SEs but I'm staying on the Tamox and lupron no matter what. And I'm typing this while on the treadmill at the gym trying to make sure that I don't gain weight.
Hugs to you
Scottie
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Thank you Scottie! I really appreciate your support :-) It has been nice to have women who understand what we are going though.
Hugs and blessings to you,
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acaligirl---I do run everything by my MO but he's kinda the old school type who thinks alot of supplements are just "all in your mind" type thing. He's really good at his job so I stick with him. He basically just checks to make sure nothing interacts with Tamoxifen and then let's me take it. I really try to keep track of symptoms and then research them to come up with natural treatments. The only thing he himself asked me to take were fish oil (one of the ones with high dose DHA/EPA) and a daily aspirin. Taking an aspirin a day caused me to have bruising so he knocked it down to twice a week and said it helps just as much as once a day. So I take Tamoxifen, SloMag, ginger, turmeric, and aspirin. Then I added Vitamin D because tests showed I was a little low. I've also had issues with nausea and burping which I think is the Tamoxifen so the local health food store suggested a probiotic as well as a Tbl of liquid chlorophyll every day which has helped alot with that. That's my big list of drugs!!
Of course now I think i"ve suddenly developed some sort of sinus problem because I have a slightly runny nose and some pressure behind my eyes and nose. I'm sure this is probably just another one of those stupid things Tamoxifen does! If it's not one thing, it's another!!
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to lolis
some chemo regiments are terrible for your heart. timmy protects your heart by lowering cholesterol but also it decreases the amount of blood thats going into your heart. full study here :
Cardiovascular Effects of Tamoxifen in Women With and Without Heart Disease: Breast Cancer Prevention Trial
http://jnci.oxfordjournals.org/content/93/1/16.ful...
or
When used for breast cancer prevention in women with or without heart disease, tamoxifen is not associated with beneficial or adverse cardiovascular effects.
Cardiovascular effects of tamoxifen in women with and without heart disease: breast cancer prevention trial. National Surgical Adjuvant Breast and Bowel Project Breast Cancer Prevention Trial Investigators.
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acaligirl, just wanted to pop in and say. You should never feel like you need to apologize for your diagnosis or feel that it is insignificant because it isn't a higher stage. Cancer is cancer no matter what stage you are. I'm stage 0 and have been through everything but chemo. It affects all of us and we have to remember that just because our treatment is over doesn't mean we don't or won't worry. I worry about reoccurring all the time. I felt a couple lumps in my good breast and I could tell it worried my BS. But he said it was good that they were painful. But didn't border an immediate mammogram or anything. And now I see 2 oncologist and a BS and each one of them does a breast exam. This is a relief to me. Anyone else struggle with depression? I've heard Tamoxofin can cause it but so can our journey of BC. I'm struggling with finding the right meds to help with that. Effexor was no good for me so now they gave me Lexapro. But haven't tried it yet. Kind of scared. I'm going to wait till the weekend.
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lala1, my MO is a little old fashioned as well I believe. I have asked her about supplements previously and she seemed a little hesitant to offer an opinion one way or another. I think she tends to be more on the cautious side. I will report what she tells me re: the other supplements.
Early on they did discover my B12 was way lower than the low number so I had B12 injections to get me closer to normal and since then the B12 daily supplements have been fine. I also take vitamin D each day because mine was a bit low too.
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josie123 - Thank you for your post.
Yes, cancer is cancer and I don't know about you but it took 1 1/2 years to get through all my surgeries and healing. I lost my mom to BC 2 years prior and had just started living my life again after caring for her for 4-5 years until she passed. So, on many levels, I fear a recurrence. One, because it is cancer, two, having to endure treatments again, healing, and it taking more time away from the things I love to do.
I understand about the lumps, bumps, etc. I try not to even touch myself because I am afraid of feeling something and obsessing over it until I see the doctor again. I have been trying like heck to lose some weight and then when I do, I freak out that it is cancer. It's a no win situation. I will never feel safe again as I did before my DX.
I don't think I struggle with depression but I do have moments from time to time when I cry or have a short pity party. I don't think I allowed myself to cry enough during my treatments, I just focused on what I had to do and did it. However, now I feel like I do need to let those feelings go, the loss of a lot of things so I could hopefully increase my survival chances. Like my husband always tells me "I married you, not your breasts, etc". and he loves what's in my head and my heart. Though I was never hung up on having breasts, there are times I miss them, having sensation, etc. I do take a small amount of Effexor for the HF's and anxiety. Mostly though, I embrace every day more than I ever did before and I don't take one single day for granted.
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Hi There, for those of you who take Turmeric for joint pain. Are you taking it in pill form?
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acaligirl, your very welcome. I'm sorry for your loss. My mother is still living and has never dealt with BC. I don't know what I'd do without her. But as she gets older she will be 80 this year I worry about her health.
I know what you mean about the weight gain. I need to start exercising and not eat whatever I want.
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josie123 -- Thank you, I miss her terribly. She was my very best friend and I was blessed to have such a wonderful relationship with her through my life. It was all very surreal, at 16 I remember watching my mom care for her mom when she had BC. I also remember her dying from ovarian cancer. So when my own mother was diagnosed, it was very scary. I will never forget sitting in the BS office, I was holding her hand when he told her her cancer was Stage 4 and when she asked "So how long do I have?" and he said "4-5 years." I cried and my mom stayed calm. We went through a lot together and she had a lot of complications along her journey that made it difficult. At the end, I had to be the one to agree with the doctors to take her off the liquid diet as her end was near. I fed her her last meals in the hospital and part of my heart broke the day she died. though I miss her every day, I am glad she is at peace and no longer in pain.
I know the meaning of unconditional love, you love someone so much you don't want them to go, but you also love them more than life and can't bear to watch them suffer so you put aside your own wants and let them go. I am sure having just lost my mom 2 years prior to my own BC DX made it all the more horrific for me since I had seen first hand with my grandma and mother what they went through. The Radiologist who found my mother's BC and mine told me "This is not your mother's cancer" when I looked like the deer in the headlights but it didn't matter. Cancer is cancer.
So, that may explain my fears a little bit more and yes I agree, I won't apologize for my feelings and fears. It was my experience and I lived it. Thank you again for confirming what I already thought!!
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Nixie - thank you for posting those studies. I thought I was in menopause but I just got my period back (after 8-9months) and I am only 34. I have a family history of heart disease (mainly AFIB and coronary issues). In December I had an abnormal ECG (something to do with the T-waves) but the RO said everything looked normal. If this pain persists I will mention it to my MO on June 4th. The last thing I want to deal with now is heart complication because of treatment (I wish I could have seen how much of my heart was damaged during radiation).
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acaligirl, so sorry for your loss. My mom was so with me every step of the way during my BC journey and not surer what I would hVe done without here. So my heart goes out to you.
Lala, thank you so much for the info on the supplements. My MO is also somewhat averse to supplements and hesitate to offer an opinion one way or another. She also checks to ensure there are no interactions with Tamo.
I have only been on Tamo for a little over 4 weeks. MY SE of the week is slight dizziness/lightheadedness the last few days - nothing constant. Hoping this is an SE that doesn't linger long and it is just my body adjusting to the med.
Hugs All
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I started taking Tamoxifen in January. My side effects have been hot flashes, insomnia (so started taking it in the morning instead of at night), joint pain (although not all the time) and night sweats. I sometimes wonder how much of the side effects are from going into menopause, tamoxifen or a combination of both? My vitamin D level has always been low. I'm taking 5000 IU daily, asa 81mg every other day, melatonin 6 mg every night.
acaligirl: I too was diagnosed at an early stage(what was supposed to be a prophylactic mastectomy turned into a Dx of cancer). There is not a day that goes by that I don't fear my diagnosis although I keep getting told that " I should not worry any more because the cancer is gone". And " I should have a positive attitude and be grateful it was caught early". I do sometimes feel guilty about the way I feel but I can't help it. Sorry for such a long winded post! What I am trying to say is we should not feel bad about the way we feel. And yes, although grateful it was caught at an early stage, we still have all the fears that a cancer diagnosis brings.
There are so many wonderful supportive and welcoming ladies on this forum. I find great comfort in their support. I hope I can do the same for others.
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acaligirl, I'm glad you were able to look back and see even those hard times with your mother were a blessing since you were able to be there for her. She is still there for you maybe not physically but in spirit. I truelly believe that.
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CindyK--I take Gaia Turmeric. It comes in a capsule. My doc recommended it because he said it's made very naturally and cleanly. It's produced in NC which isn't too far from me. The capsules are 500mg each. He suggested I start with one capsule for a couple of weeks and see if I had an improvement. If I didn't, I was to increase to 2 and so on up to 3 capsules a day. I got an improvement from 1 after only a few days so that's the dose I stayed on for the last year and a half until I went through surgical menopause and needed to up the dose due to menopausal leg pain. I do take ginger and magnesium with my turmeric so I don't know if it would work on it's own. It's probably a combination of the 3 that helps the most.
And as an added benefit, ginger and turmeric are anti inflammatories so they help your heart (which is good since Tamoxifen can cause blood clots and strokes) and magnesium helps keep your colon regular (which is also good since BC survivors have an increased risk of colon cancer, hence the reason we have to have colonoscopies every 5 years instead of every 10).
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acaligirl - I also got my feelings hurt by one of the ladies who posts on another topic. She took one of my comments out of context and spitefully chastised me. I don't post on that topic anymore. Who needs that kind of misunderstanding....glad you are staying with us.lala - I did not know about the recommended colonoscopies every 5 years!
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Blownaway---The doctor who did my colonoscopy last year told me that. I then confirmed it with my BS and my MO. Also, my dad is a urologist and he told me the same thing. Something to do with "like" cancers causing "like" cancers. If you have one reproductive type like breast, colon, ovarian, endo, prostate, etc, it increases your risk for the other "like" cancers. Not alot, but enough to keep vigilant.
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huh, that is very interesting information about the colonoscopys. I had an email s few weeks ago from my PCP that said that I needed to schedule a colonoscopy. I thought it was a mistake because I am not yet 50. Maybe it wasn't a mistake.
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Hi everyone.. woke up this morning and went for my exchange.. On the way to the hospital I thought Would check emails, facebook, etc. However I am not able to read the screen my vision is very blurred. Anyone else have this problem? If so is it temporary? Is there anything you can do to get the blurriness gone? Is it a symptom I should speak to my OC about?
TIA
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CindyK---Didn't anyone at the hospital have an opinion on what might be going on with your vision? Are you on Tamoxifen? I've heard that in rare cases it can affect your eyesight. I would absolutely call my doctor for an immediate appointment.
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Cindy, consider your stress levels and consequent anxiety as a cause of your blurred vision. Once I recognised this in my case, I learnt to handle situations better and keep myself on an even keel. I've never had a problem with Tamox and vision.
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