Bottle o Tamoxifen
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Got my prescription last week and I'm really feet dragging. Don't really want to take it. So I guess I'll fill it on 5/1. Nice round number. I better lose weight or not gain any, or I'll be mad!
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Hi RReynolds! Your friend should check with her oncologist...sounds more like a low-grade infection or something! I haven't heard of Tamoxifen causing those side effects, but then, every-one is different! How does your friend know that the Aromasin does not work for her? Did they do a test? It's always good to know about other people, because it helps US decide what to do! Jeannette0
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Hey travelgal, I dragged feet too, getting my scrip in mid-Nov but not starting till Dec 1. Figured I wanted to get through Thanksgiving w/o worrying about a new drug. I know it's easier said than done, but try not to "worry in advance" too much about it, just give it a try and see how it goes. Lots of women do just fine on it and with any luck you'll be one of them, so try to keep a positive outlook about taking this proactive step agst further BC rather than worrying about possible side effects that very well may not happen!! And if you have Q's or worries, do come back here and ask - the women here are really supportive & knowledgeable. Best to you -
CS
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Hi Chevyboy,
My friend, Margaret, is a 7 year survivor. They tried Arimidex for 3 years but it did not work, then they tried Aromisen and that worked until 6 months ago. She was told that Tamoxifen was one of her last choices. She had the flu earlier in the year and I agree that it sounds more like an infection. However, they took her off the drug for 7 days and the symptoms disappeared. She is a retired RN and Reiki instructor and is pretty up on what's going on with her. I just was curious if anyone else had these particular symptoms and if they subsided over time. She is going back on the drug next week.
Roseann
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Hi Tamox. Ladies:
I was on tamoxifen for 10 yrs. (1987 to 1988.) I was pre-menpausal at the time. I had 5 of 14 nodes positive and do believe tamoxifen helped save my life. Tamoxifen does not help you lose weight...have never heard of that...but you can maintain your weight or lose wt. if you change eating habits. I'm a 23 yr. survivor and am metastic to parts of my bone. One node lived. I thought I was cancer free untile 5 yrs. ago. I've been on Aromasin and Zometa once monthly and, to date, have done well. I do savor life and make sure I can say that I made some contribution at the end of each day...even if it's feeding my neighbor's animals. I feel blessed and am due for my 3rd PET in two weeks. I will keep you in my prayers and please keep me in yours.
Much love and many hugs to all!
Lindy Griffin
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To All:
I was on tamoxifen for 10 yrs. (1987 to 1988.) I was pre-menpausal at the time. I had 5 of 14 nodes positive and do believe tamoxifen helped save my life. Tamoxifen does not help you lose weight...have never heard of that...but you can maintain your weight or lose wt. if you change eating habits. I'm a 23 yr. survivor and am metastic to parts of my bone. One node lived. I thought I was cancer free untile 5 yrs. ago. I've been on Aromasin and Zometa once monthly and, to date, have done well. I do savor life and make sure I can say that I made some contribution at the end of each day...even if it's feeding my neighbor's animals. I feel blessed and am due for my 3rd PET in two weeks. I will keep you in my prayers and please keep me in yours.
Much love and many hugs to all!
Lindy Griffin
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To All Bottle 'o Tamoxifen Friends:
I had posted earlier that I had taken Tamoxifen along with CMF from 1987 to 1988. Symptoms for me and my cancer group (we met at Stanford and six are still together) were and are: hot flashes, vaginal dryness, from pre to post menopause and a little weight gain does come from that transition alone. The world of breast cancer is a scary one. I'm stage 4 (mets to the bone) but I am without pain and love life. I have lived for 23 yrs. and don't plan on leaving soon. It's important for all of us to keep copies of our blood work (really watching our liver enzymes i.e. SGGT and SGOT. When they elevated, my oncologist took me off Tamoxifen. I watch my blood work like a "hawk" and have been on Aromasin for 5 years. In order to know that Aromasin is no longer working, I believe it would take a PET Scan to show how and if the cancer has progressed. I'm due for my 3rd in a week. So far...so good. I have to watch my creatine levels (kidneys) and, to date, all is well. I have friends that have stayed on tamoxifen for 20 yrs. They are all connected to Stanford and the surrounding areas. I'm fortunate that I have good insurance through my husband's company and think I know how you must feel. It's always scary and most of us are not ready to say "goodbye" yet.
Love and hugs...they're important.
Lindy
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A P.S. from "love the sea."
I've taken liquid calcium mag the entire 23 yrs. I've had cancer. It didn't seem to affect or interfere with Tamoxifen or Aromasin. It's also great to check your vitamin D levels. I wound up taking 3000 iu a day and continue to do so. There's good info on vitamin D and cancer on the web. Several of my cancer friends found that they were totally depleted of D.
Lindy
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Recently diagnosed with stage 4 bc with mets. Started taking Tamoxifen almost a month ago and started my Zometa infusion (on a 4 week cycle). Will be going to my onc next week for the first time since starting treatment. Does anyone have any suggestion for questions to ask during this visit?
The only symptoms I've experience is that I run fever intermittently and get tired/fatigued easily. Don't know if that is the treatment or from stage 4 bc.
So glad I found this site; very inspiring and uplifting! Thanks!
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Lindy: You said "I was on tamoxifen for 10 yrs. (1987 to 1988)" Did you mean 1987-1998 or did you just take it for a year? When you say "one node lived" do you mean that the surgeon missed one node which was malignant? You mentioned that your friends are on tamoxifen for 20 years. I never realized it was used long-term like that. I thought it was typically just used for five years.
Welcome Deedles. Yes, this site can be inspiring and also a great place to come with questions, moans or rants.
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I know my son-in-law's grandma had BC in the early 1980's when Tamox was being first used widely and she STILL is taking it! She's too afraid to go off of it and convinced if she does she'll get BC again. Of course she is pretty old now too and quite a worrier. Her doc must not mind her being on it since he keeps renewing her prescription!
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Hi Deedles63 - I see you are stage IV - in the stage IV forum there is a relatively new thread about hormonal treatment as it relates specifically to stage IV. You might post some questions there too - I'm sure ladies on that thread have some insight they can share. I don't want to direct you away from this thread - but thought the other thread might be helpful to you too.
http://community.breastcancer.org/forum/8/topic/751203?page=3#idx_79
edited to try to repost link - I can't get the link to work - but copying and pasting works.
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Deedless6e,
Your symptoms are similar to my friend's and her oncologist said it was from the Tamoxifen. Be sure to mention that when you see your onc. He/she may suggest another option for you that doesn't have the same side effects.
Roseann
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Thank you for your reply and words of support. I'm taking my fist pill tomorrow. I'm so happy to have found this Board. What a god-send. It's the best support group in the world!
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lovethesea - thanks so much for sharing your inspiring story! I'm definitely sending good thoughts your way for "all good" PET scans. Thanks also for your comment about the calcium. I haven't yet found any data on it otherwise so I think there's just no evidence of a problem. Not taking Ca and getting osteoporosis could be a bigger problem. Vit D too - I definitely agree with you there.
Have a great weekend everyone. I hope it's sunny & warm where everyone is, like here!
CS
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Dear Mary:
Yes,I was on Tamoxifen for ten years )1987 to 1997 and I'm happy you caught my date mistake. I've been in the Stanford Breast Cancer Community for 21 years and know many people who continue to take Tamoxifen. I did have a hysterectomy in 1985 which kept me from worrying about uterine cancer (which can be caused by Tamoxifen.) I also keep copies of all my blood work and would have continued to take Tamoxifen if my SGGT and SGOT enzymes didn't elevate. With regard to "one node lived" there are nodes that cannot be reached by the node dissection. If I had chose to have radiation, it probably wouldn't have lived. The ten yrs. of Tamoxifen helped save my life, but the node grew, wrapped itself around my right arm anxillary nerve and a vessel. I had right arm symptoms and (thinking I was cancer free) waited for two years before seeing my oncologist. He was sure it was scar tissue from a double free flap surgery I had in 1994. All were surprised when the Bone Scan showed something, then the PET confirmed Stage IV Breast Cancer w/mets to the bone. We all have a choice with our protocol and I definitely got a second opinion. A great oncologist in S.F. concured with my oncologist in Palo Alto, so Zometa and Aromasin were my choice. It's amazing that one little node made it past my initial chemo, but I only had CMF which was a protocal in 1987. Now it's the heavy duty "stuff" right away. Hope this answers your questions.
Sending hugs and warm thoughts,
Lindy
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Dear Lindy:
Bless your heart and my thoughts and prayers are with you always. Thank you for sharing your story with us. I'm so glad you got the 2nd opinion and have such a great doctor. Sounds like you are very thorough in keeping up with your records/lab results. I always ask for copies too and have a file I keep everything in. I'm going Tuesday for 1st mammogram since bc diagnosis and from what you said about Tamoxifen, I surely will be getting lab-work done to see how it is affecting me. I've been taking Tamoxifen since 1st of February, 2010. If you don't mind one more question?......what does CMF mean? I had chemo, Taxotere/Cytoxan x 4, last one was 1-7-10.
Best wishes to you, Lindy, and thanks again for your open-ness in sharing your experiences with us.
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I have been taking Tamox since August '09. I have experienced a wide range of side effects, some more manageable than others, some that have resolved over relatively short periods of time. In the last several weeks I have had what appears to be at least one if not two blood vessels burst. The latest happened on my arm, right above my wrist; the other was on the outside of my thigh. I also have noticed that I can really hear my pulse pounding in my ears by late day/early evening. When checked my blood pressure is normal for me (90/60, 100/70). I have called my onc's office and I will be seen in about 2 weeks. Has anyone else had these kind of symptoms?
Thanks for all the good info and support found here....
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So I have been on T for the past two weeks and I was wondering can I blame my wicked bitchy mood on it? or perhaps, it is because I have been off wortk for months and just started back. I work full time and have a house and a family to take care of...perhaps it is that. Or a combo of the two.
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Hi Brenda:
I haven't noticed any blood vessels bursting but I sure have noticed an increase in varicose vein appearances. and I also hear the pulse pounding----very strange, isn't it? I had thought that little issue was just me, as I am on Coreg for blood pressure and chest pain.
The blood vessels bursting seems concerning to me....and they still can't see you for 2 weeks? You've been on Tamoxifen for 6 months longer than I have.....what other side effects did you have and which ones have subsided?
Hey Michele:
I started noticing I had a VERY low tolerance for stuff that I used to just shake my head over. I've found myself saying things that I (pre-bc) would never have said.....out loud! It's kind of liberating , actually! A few of the older women I work with are pros at the tellin' it like it is routine....so I guess I've joined that club now, too!
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Lindy, Would you share what were the "arm symptoms" you mentioned? Since I've had a SMx I won't be able to get a mammogram on that side, and I was wondering how I might notice if it recurs in the remaining lymphs there.
I send all positive thoughts for a clean PET scan when you go. I deeply admire your strength and fighting spirit.
CS, Many thanks for the recommendation for Anti-Cancer, and I'll repeat the plug for this book that reviews all kinds of medical and alternative approaches to treatment. I haven't finished it yet, but I'm finding it very informative and inspirational. Following your (and the author's) sound advice, I've been consuming LOTS of fruit-veg every day. I'm not deliberately omitting other foods, but I fill up on the veg and just have less space for all the junk I used to eat. I hadn't noticed any big difference as I've made the change gradually, but today I sure felt immediately sludge-like after eating a cheeseburger and hotdog at a fundraiser softball tournament. (Next time I'll just donate the $5 and they can keep greasebomb.) More salad!
Cool, drowzy nights and sunny days to all the brave ladies here! Love and hugs, Ali
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Micheleboots....I was told by my Oncologist, that I would be having mood swings & be "bitchy," (in front of DH!) So when this started happening, I would TRY & not let the moods take over....(most of the time) I was bound & determined to prove them wrong! I think whatever side effects you are having, will only last awhile, then you can plan on something else coming along...
and taking it's place! Have you gals found that your "mind" seems more alert now? I mean I thought I was before, but NOW I can organize & figure things out better than ever. I don't know how to exactly explain it, but I feel like I am really "there" & make the right decisions...even small ones! I would like to credit this to the T pill. Or is this just the beginning of something I don't know about?
Lindy.....I would like to think we can find hope, with your post....but your experiences with Tamoxifen weren't very good.....But you had Chemo, & then didn't do the Radiation after your surgery? Just the Tamoxifen? You would THINK that if you ever got cancer again, that it would not be related to the first time. The Chemo, I thought, is one of our assurances that we are fighting this with everything they have!
But I realize that sometimes no matter what is done....We can't always be positive that we won't get this again....So we gotta just live for each day....& hope & pray for the best! So on THAT note......
Jeannette
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I am am 59 and switched from Aromasin to Tamoxifen a little over two weeks ago because the SEs from the Aromasin were making me miserable. It's only been two weeks and I feel like a different person. I feel like I did before BC. The joint pain and sitffness are still there (onc said it would be 4-8 weeks for them to clear) but in general I feel GREAT. Chevyboy I was intrigued by your statement about your mind being more "alert". I would have to agree that my mind seems more alert and I am able to get a whole lot more done at work. I feel more in control... Do you think this side effect will last... I sure hope it lasts. So far the only SE I have is mild hot flashes. I actually think I was suffering from mild depression on the Aromasin and just didn't realize it. We are all so different and all these drugs effects each and everyone of us in a different way.... Good luck to all of you.... 0
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Chevyyboy and knowledgeforpower: I don't know that my mind it "more" alert for decision making because of Tamox or not. Maybe it is just that we are so aware of everything and have had so many decisions to make up to this point it is just second nature now.
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Hi Gals....You know, I'm not sure what it is, but like today, I'm switching Summer Clothes for the Winter clothes in my closet, & I found BOXES of shoes....1/2 full! A lot I will get rid of, but I am amazed at how much work I make for myself! I used to hang onto everything, but now, I will get rid of what I won't use! Maybe it's because I'm getting older, & MAYBE more sensible, but I still think the Tamoxifen has something to do with it..... Maybe I'm just "nesting".....Ha! But I'm trying to organize my closet so I can actually find things, & maybe even "walk in" instead of fighting through the clothes!
AND....I am more tolerant of the things my Husband says & does now!
I have quit correcting him when he mis-pronounces a word....at least most of the time, & when he is helping me around the house, I just let him do it his way! Even if I have to change it around later! Maybe I am just more appreciative of him now....You are right about the decision making bcincolorad...... We HAVE had to wade through so many things now! Maybe that what makes us "sharper!"....Jeannette
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Psalm121, Yeah, I really do have to wait 2 weeks to see my onc of 3+ years. I am making sure that I take fish oil capsules every day, which my internist recommended for the stroke risk after I first started Tamox and rediscovered that I can't manage aspirin (makes my tinnitus so loud I can hardly hear people talking to me). The range of side effects I have had with Tamox have included migraines (resolved), nausea (resolved) profuse vaginal discharge (resolved), blurred vision and dry eyes (partially resolved), thinning hair (head, eyebrows and lashes), thickening of my waist area (with no increase in weight, probably because I work out at least 5 of 7 days a week), fatigue (reduced somewhat, perhaps also from recovery from chemo), joint/bone pain (reduced), vaginal atrophy (unresolved, probably never to be resolved!), and difficulty sleeping (partially resolved).
I also have read the Anti-Cancer book and really enjoyed it; I plan to read it again. Mood swings? I think I am less tolerant of frustration and others' disrespect/lack of competence/disregard for others. When I was taking Arimidex I experienced such despair and moodiness I thought I would "lose it" on a regular basis, had to fight hard to remain centered and avoid impulsive behavior (like telling someone off). My mood on Tamox has been significantly better. I haven't noticed any increase in alertness: I've actually had more mentally fuzzy moments, but again, that could be related to "chemobrain" as well.
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Hey "T " Pals,. Here's some picture of me & my Pink Outfit at Ky Oaks Friday April 30 "pink Out day" ( day before the Ky Derby) Breast Cancer Survivor day. It was 136 th running of the Oaks & had 136 Breast cancer survivor Parade around Churchill downs. I was so Honor & Held my Head up High for all you ,my Pink pals! It was a wondeful day & I meet several other Beautiful Breast cancer Survivor.
Then I got home & had a message from my oncologist office to call them back Monday. They would have to rain on my parade! Maybe just more test results ?
Hope all of you are doing well. I was thinking of all of you when I walk in the parade & I am Praying for all & esp that everyone's appt & treatments go well this week.!
{{Hugs}} Gina PS I started back On Tamoxifen Yesterday. I wanted to wait til after the oaks parade, so my leg would not ache & No headaches. So we will see it was the side effect or if It was the infection . ( it was probally little bit of both)
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RE: Pulse pounding in my ears. This began from me during chemo. On another thread, there were women mentioning this during chemo also.
I was on tamoxifen for four weeks until the joint pain and hand swelling prompted my onc to take me off. Now we are waiting for hormone test results to determine if I am post menapausal so he can try an AI. We shall see!
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Thanks ReginaR for sharing all that pink pics. That's great!
I'm officially through 5 months...only 55 to go!
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Brenda:
wow, thanks for sharing your Tamoxifen experiences.....you have given me hope that some of these side effects I'm having will also resolve! If I could just get myself motivated to move and exercise! So far, I've been lucky to walk 2 miles in a week!
Gina! loved the pictures and so glad you got to have yourself some fun! Thanks for honoring us with your Survivor Walk. It must have been a very uplifting and touching experience.
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