Bottle o Tamoxifen
Comments
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Girl Friday, yes I here you about the feeling of Impending doom.I get that monthly when I'm ovulating.I feel like that right now.It usually only last a day or less.I think it has something to do with my hormones .
My sleep has actually improved since I started the Tamoxifen.At first it wasn't good.Not sure why.But maybe out of pure exhaustion.Used to get up at least once in the middle of the night to go potty.Lately I haven't even done that.But in exchange for sleeping I still wake up feeling tired and really have no energy.My boss wants me to be more productive but I really don't feel the need to explain why I haven't been.Although I guess they can't hold that against me or can they?
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I run into the same thing...I don't think any explanation is justified, because I haven't actually shared with my boss that I'm a survivor. If he wants to criticize my work that's fine, but I'm not getting into the details as to why I'm a zombie on occassion. Oh and I forgot to mention...I wanted to have an ablation when the fibroid was removed...I'm 40 and not having kids, but the gyno thought it was a bad idea because of the endometreal cancer issue. If they removed the endometrium then they couldn't test it for cancer. Ack! I've considered an ooperectomy, but I just wasn't ready for menapause. I just feel like my body should be able to balance itself out...but yet again there always seems to be some issue. It's tedious and tiring.
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I thought I read this but now I can't remember is a SE itching? It is driving me crazy. Does it go away?
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I am one of those with itching....especially all around my hair line. Went off Tamox for a while (still off...rogue intervention!) and am now treating self with allergy test driven serum injections, since all Tamox side effects have abated except for the allergic itching. Am seeing derm for annual next week. She told me last year that the itching was related to the Tamox altering my estrogen, and since estrogen is protective for your immune system, the allergies have surged. Lovewins, have you ever had allergies in past. I did as child, got injections thru childhood, and had been fine through adulthood til Tamox. Am hoping the current treatment helps with the itching....lately it wakes me up every nite. Hope you can find a cure for yours.....Runfree, are you out there? Is your itching still resolved?
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Lacey....I have been lurking at the what's for dinner thread and been feeling your pain as you give up dairy. The only thing I was allergic to was bee stings and I got shots for that. I will try to read up on Tamox altering estrogen....I am hoping this is a positive? Thanks for letting me know I not alone. I hope you get yours resolved and you are able to eat some dairy again.0 -
noooooo, not itching? I had severe itching while on taxol and can't imagine having to deal with it again. I have my three month supply of tamoxifen but my MO wants me to wait until Monday to start. He wanted to make sure that I could distinguish the SE's from the rads first. So far, no noticeable SE's from the rads.
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Hi all. I started Tamoxifen Oct 2012 and my main issue is hot flashes. My MO put me on catapres twice a day, but it hasn't helped. Other than that, not too bad. Are others taking anything to combat the flashes?
Thanks! Traci
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I'Ve been away from here a while, had bronchitis and bunches of tests. Seems iI had 90% artery blockages. Had surgery and am on the mend. Been taking Tami for a year now and have an occasional hot flash biggest problem has been soooo tired. 4 more years of this an now a year of anti-platelet drug for heart. I'm getting wore down. Also have diabetes 2 and rheumatoid arthritis. With heart and diabetes anything good i' m not supposed to eat! Sorry to complain so much, just down tonight. Happy days are bound to come along! Everyone take care.
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Traci- a lot of people here on the boards take Effexor for hot flashes.
Good luck!
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Missspinky, glad to hear your on the mend.90%blockage? Wow your lucky they found it before you had a heart attack.
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I Never had chest pains, just back uncomfort and shortness of breath and tired, so tired. Thought it was Tami and Rads after effects. Doc finally sent me for tests and ended up with cardiologist and in surgery next day. Believe it that women have different heart problem symptoms!
So lucky they found out. No heart damage. Still have follow up tests.
Question abt taking Tami, ive been taking it at night for a year but have a light snack first, food on stomach helps to keep SE away. Good luck yuall.(Texas drawl).
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Where in your pack did it hurt?
Did you hear Tamoxifen can cause heart problems? I thought I heard that somewhere.
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I Was hurting across my back just under my shoulder blades. I had back pain upon any exertion. It hurt to stand up straight and would get better after laying down for a while. I thought i had heard it could cause heart trouble, also have heard radiation could cause heart damage. I'm 75 so mine could be from age, but in addition i've been on Tami for a year if it is a suspect, I don't know. Cardiologist hasn't zeroed in on cause of my blockage.
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Need some advice....just had my annual this past Mon and asked the gyn about doing a baseline ultrasound re endometrial lining. I've had regular normal periods through all my treatment (no chemo or rads) till Jan. I had a period in Jan then not again for 10 weeks then another period and now 7 weeks since that one. She feels I'm in menopause. She said she didn't really see reason to do TV US but it couldn't hurt so we did one. Now it seems I have all sorts of issues and she wants to do a complete hysterectomy! I have an enlarged uterus, a few fibroids, my left ovary is 6cm and right is 3.5cm and both should be between 2 and 3. The left ovary has 2 large simply cysts and my endometrium lining is an 18 and should be around 12 so its thickened. I'm not having excessive bleeding when I do have periods and no pain or cramps otherwise. I'm sure the Tamoxifen is the endometrial culprit. I'm BRCA negative so not at greatly increased risk of ovarian cancer although having breast cancer does increase my risk somewhat. I haven't had hot flashes so I don't know if I'm actually in menopause or if I'm just one of the lucky ones. I'm 50 years old. My gyn says to just take it all out, that I'm not using it and not going to (never had kids or plan to at this point!). However, I keep hearing all sorts of forced menopause horror stories and am worried I would be doing too drastic of a measure. On the other hand, I do have lots of issues. I had a biopsy yesterday and am waiting for the results of that. And she wants to do another TV US in a month to see if anything changes re the cysts or fibroids.
Irregardless of tests and/or changes she is really pushing me to do a complete hysterectomy. I've talked to a couple of people who know people who've had one and all are saying it was the best thing they did. Got rid of all the problems. Thing is, I'm not having any "problems" so it makes me a little hesitant. Am I blowing the side effects out of proportion? I'm on Tamoxifen and doing ok as far as SEs, joint/muscle pain is biggest issue. Can a hysterectomy make what may be an "easy" menopause into a horrendous one? My gyn actually had one herself at 43 and said it was a good thing for her. She said a month recovery because she does the bikini line incision. My dad, who is a doctor, said I should have it done with endoscope (?) cause it's a much easier recovery. She doesn't like to do it that way cause she says the surgery takes 3 to 4 times longer and she doesn't like patients under anesthesia that long. She also says she done both ways and doesn't feel the recovery time is that much different.
Anyway, sorry if this is the wrong place to post this. Wasn't sure where to ask. If anyone has any thoughts or advice, it would be greatly appreciated!!
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I'd advise a second opinion, just because it's such a drastic surgery. I know there are lots of women who are happy with their decision, but I've also heard an equal number that have had additional problems. I also worry about gyns that are so pro surgery, and especially such an invasive style when there are different ways to do it. What about just removing the ovaries? See if you can get a consult with a gyn onc, this may give you perspective. I had issues with my ovaries too, but there they cysts came and went a couple of times...it was almost like the US just gave me more to worry about. It's also something to discuss with your oncologist. They'll want to know what's going on in your body.
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Lala1, I'd agree with GirlFriday, a second opinion (especially with a gyn onc) should be helpful for both questions you have....the need for the total hysterectomy and the type, traditional or less invasive. Good luck to you as you make your decision!
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I'd definitely get a second opinion from a GynOnc, and if they're still talking surgery, demand a follow-up u/s before surgery. They were all ready to go after an ovarian cyst I had, and possibly more (whole ovary, possible hyst, etc), and my hubby said, it can't hurt to do one more scan, right?
Follow up showed everything had resolved and that all the cysts were physiologic (ie my post chemo body was just trying too hard to ovulate). So - no surgery needed.
Surgeons are wonderful and save lots off lives - but they do like to cut things.
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My story:
For me, a full hysterectomy is a necessity. I've had two myomectomies, and one uterine embolization a few years prior to my BC diagnosis due to fibroids and endometriosis. My BS was more worried about my uterus then she was about the BC. My pet ct scan showed that my uterus was filled with tumors. You would have never thought that I had the prior procedures by looking at the scan. She couldn't believe it. My husband and I couldn't believe what we were seeing. She sent me straight to a Gyn oncologist. He told me that I had to have the hysterectomy because of my underlying issues. There was no way that I could be on tamoxifen for 5 yrs. and not get it done. Based on the report, some of the tumors looked "suspicious". I wanted it done along with the mastectomy but they felt that it would be too much on my body. My Gyn oncologist said that the chemo would shrink the tumors making it easier to do the hysterectomy. He is hoping to do it endoscopicly. The two myomectomies where done with the bikini line incision. I start tamoxifen tomorrow and can't wait to be done with rads so that I can get it out!!!! I'm done with rads on the 27th and hoping that I can have the surgery a few weeks later. Fingers crossed!!!!!!
Definitely talk to a Gyn oncologist! You mentioned that you are not having any "problems" but knowing what we know about tamoxifen and the accumulative effects that it has on the uterus, you should consider having it done. I think it's best to be proactive. You don't want it to get worse. Take care of it now. Remember, your doctor didn't even want to do the ultra sound and look at what came up.
Whatever decision you make be sure it's right for you. I know that it isn't easy. You will be in my thoughts.
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McKatherine, you reminded me of a story from waaaaaay back in the day when I had a blind date with a surgical resident. As we were headed out for the day, I asked him why he decided on surgery.....he responded, "Because I like to cut". I almost jumped out of the car!
Up to current day, my older son is an ortho surgeon, and I am always happy when I hear of him referring patients to PT rather than getting his scalpel out.
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And good luck to you, also, Lonnie. Keeping fingers crossed for you, too!
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Here's another vote for a second opinion from a gyn/onc! If you decide to go ahead with surgery and (heaven forbid) there's anything malignant in there, outcomes are proven to be better if a gyn/onc does the operation. Good luck!
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for the last 3 months or so since CVS has been unable to get Teva in the 20mg I've had to take 2 of the 10mg, well I notice I have gain 4 pounds, haven't changed anything, also notice my hands are swelling and stiff, my right should is getting stiff again too and just over all feeling bloated. Monday CVS was able to fill it in the 20mg, I SO hope this all goes away soon!
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thanks everyone for the advice on getting a second opinion re having a hysterectomy. It is day 6 since my biopsy and I'm still waiting for my dr to call me with results! Looks like I may need a second opinion as well as another dr, although I do like her alot! I've called and left a couple of messages but nada,. While I'm waiting I wanted to ask about AFTER a hysterectomy. I am not in menopause (perimenopausal) yet and know that this will toss me into menopause quickly. How bad will it be? I don't have hot flashes yet and despite my dr telling me I'm pretty well into menopause, I don't really have any issues at this point. If I have the surgery and end up with hot flashes, how do ya'll deal with them? I'm ER+ so HRT isn't an option. I think I'm more worried about after surgery than the surgery itself. Thoughts?
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Hi Lala. I am sorry you are having to wait and I hope you get your results today!
I would suggest starting a new post with your questions so that more people will chime in about what their hysterectomy experiences are. I am also taking tamoxifen and worry too about being told to have a hysterectomy. I have been on the Tami for about 30th and have started having heavy periods. I think you are right to give this careful consideration and to get 2nd opinions. Someone I know had a hysterectomy and did have terrible hot flashes. Her Dr gave her Effexor and said it was a godsend (took most of the hot flashes away). For me, I would worry about the sexual side effects - dryness and loss of libido. I am married and this would be a problem for us.
I hope your biopsy comes back negative. Please keep us posted!
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Woo hoo!! Results from biopsy are negative!! Dr still wants to me eventually have a hysterectomy but she says now I can take my time and look into all my options. She said sometimes Tamoxifen (which can thicken your lining) will give you a "pseudo" thick lining. They call it "honeycomb". She says it can make people think they have a thick lining when they actually may not. Regardless, I still have fibroids and cysts, so another TVUS in a month and then we go from there. She did tell me my surgical menopause side effects shouldn't be as bad since I was in perimenopause. However, I told her if I went through with surgery, I would want it done laparoscopically (which she doesn't do, only abdominal). She said that's not an option since I never had kids. That they wouldn't be able to remove my parts vaginally. What? Never heard of that! So a second opinion is definitely in the cards.
And thanks, Dawne-Hope, I will start a new thread and see if I get more information.
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I just had a visit with my RO yesterday. I was on T, stopped for radiation and then started up again on 4/6. I am also on Fluoxetine (Prozac) for PMS. I was all set to ask her about the interaction with F because it is on the list of high interactions with T on drugs.com when she said that she wanted to make a slight change. I started Fareston (toremifene) this morning. The MO stated it is essentially the same med as T, but the formulation is not affected by the T. The RO said that T, and every other drug in that category except Effexor, may make the T less effective blocking estrogen. Is anyone else on this med? I did a little poking around on Drugs.com yesterday. The first page that popped up had a warning about long QT, tachycardia and passing out. It freaked me out. I am planning to go back and read past that part, but I need to settle down first. I had some tough SEs with T, but at least my heart didn't race and I didn't pass out. And of course, I was very excited because on Monday my RO cleared me to get back into the pool to train for a July 19 triathlon. Not a good time to be worrying about staying conscious!
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lala 1, Hi, don't really understand what your gynecologist is telling you. I had a complete hysterectomy after chemo and radiation. It was done laparoscopically with no issues. Small incisions. The worst thing was the gas that they pump you full of to see all the body parts. I have never had children and is certainly wasn't an issue. Another opinion for sure.
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downey30,
How long did you have to wait after rads to get the hysto/ooph? I'm curious about the timing as I need to do it also.
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Downey30
My doctor is trying to tell me that doing the hysterectomy laparascopically still involves removing the uterus through the vagina. If you haven't had kids, the pelvic bones aren't as relaxed so removing it this way is much more involved and painful. I know through my research that you can remove everything laparascopically but it involves morecellating the uterus which the FDA is now recommending that doctors quit this practice of removal. Morcellating the organs, it turns out, can spread cancer through the abdomen and lead to a deadly type of cancer. I had a negative endometrial biopsy but do have fibroids and cycts and you can't know for sure that there isn't cancer there until it's removed and tested. This isn't common but the new guidelines say that it's more common than thought. I'm trying to get a recommendation for someone to give me a second opinion. If I can get a laparascopically assisted vaginal hysterectomy, that may be the way to go. I am not questioning getting the surgery; I'm questioning which procedure to use. Not real keen on the idea of 3 months of recovery!!
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has anyone experienced worse SE when re-starting the tamoxifen after a break?
I had to quit taking it for my exchange surgery, and restarted about a week ago. About an hour or so after I take it, I feel really hot - not exactly like a hot flash, but I'll feel hot for several hours. I'm also having a really hard time sleeping. I'm not sure if it's because of the tamoxifen, or just getting used to sleeping without taking Valium at bedtime ( I was taking Valium to prevent the post-op aches during the night and first thing in the morning). I'm hoping this evens out soon - it's getting really hard to function with so little sleep.
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