Bottle o Tamoxifen
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has anyone else developed complex cysts on their ovaries while taking tamoxifen?
If so, what did you / your docs do??
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Hi ladies,
I'm curious if any of you have experienced a hard breast from takin tamoxifen? My mom's affected breast has turned completely hard. Like the whole thing is completely hard.
She had a breast exam on Friday and it was totally fine and a day later it is completely hard. I'm so worried that something serious is wrong.
Do you think it could be from tamoxifen? She does have a history of a hematoma after her 2nd lumpectomy. I'm thinking maybe this is a seroma?
Have any of you experienced this?
Thanks ladies
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Chelsea, I think it could be scar tissue after having 3 lumpectomy' s.Radiation also causes the Breast to become hard.Also lymphedema which is a condition caused by lymph node removal.
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Hi ladies.
I'm new to this board. I'll be having my last chemo on Jan 2nd and am just wanting to know how long after that I would start Tamoxifen.
Thanks!
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Hi. My last one is Monday and I start Jan 2nd
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I had about a 3 week break after chemo - but I could have started sooner, since I had the prescription.
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Thanks lindacam and caitlin 61!
We have a family vacation planned for 8 weeks after I finish chemo and I was hoping I'd be able to travel without any chance of side effects. I guess that's not going to happen.
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uds 17. I started radiation 13 days after chemo and I would have been well enough to take a trip no problem just a slight bit of neuropathy
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Uuds- I stopped chemo 8/26, had my surgery 10/28 and didn't start my tam till 12/12 because i wanted to spend time with family without something going on with my body. If you want to delay taking it- talk to your dr. I don't think delaying it 8 weeks will matter. It will take longer than that for the chemo to move out of your system.
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uds17, I actually felt better the first few weeks after I started Tamoxifen - like I had a sudden burst of energy - it was probably just that I was starting to get past the fatigue brought on by chemo and radiation. I'm now in my 5th month on Tamoxifen, and although I have night sweats (starting to diminish) and some periodic sleep disruption, I have to say it hasn't been too bad at all so far.
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it's good to hear that the night sweats can diminish! I was awakened with them in the wee hours this morning and never really did fall back asleep! Not normal for me. Taking my melatonin now....
Uds, you may not even see the se's - my hot flashes started during rads, so I can't really blame the tamox .(though I'm sure it's not helping!). I'd probably be too afraid to wait too long.
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Hi Ladies,
I am jumping into this thread. Have tried two of the AIs with horrid SEs. Have been on tax only a couple weeks and the SEs remain the same-bone and joint pain, can't sleep, moody (anyone need killing or maiming-will run over with my car). And more.
For a fast, down and dirty introduction in the middle of the night. Because I cannot sleep because of the %*^& estrogen blocking drug that also keeps the mitochondra on their backs laughing at any and all moisture I try to add anyplace on my body or hair or any weight loss I aim for through diet. Exercise-ha-since I can hardly limp let alone walk.
Joined the club June 2012. Had years and years of lumpy bumpy breasts. First mammo @ age 32 and yearly thereafter. Am now 62 but feel older than God. Had a lump-grew to fingertip. Slowed down the coffee which usually made any lump go away. Added a smaller lump and seemed to grow together. Within 15 days-documented by medical had a mass the size of a double deck of cards pulling my breast down and pulling my nipple to the right. Felt like cement. And the saga began. Chemo, surgery number 1 after a new shadow following 4 dose dense cytoxin adriamycin and 2 new shadows following 7 taxol and herceptin. Toxic on taxol. Switch to taxotere. Toxic and neutrophils dropped to 0.3 and banned to home. First MX December 2012 with 23 nodes. Herceptin dropped ejection fraction to 35-lots of MUGA scans and ECHOs. 30 rads. Second MX July 2013. No reconstruction. Breast surgeon declined until after 2nd MX. Then was only approved for that surgery by cardiologist due to EF. Plastic surgeon doesn't want to start until health back to prior to BC. I am thinking not as she said rads side will be a 4 stage process and other a 2 stage. Minimum. Plus by that time I will be really really old and my chemo brain will probably be at the point I may not even remember why I want breasts. And I certainly do not want to add anymore pain to my life. Day I had mammogram I accepted a new position as Dean of Health @ a university and found out my husband (now ex) had an active match.com website and had a date that night. The last year of our marriage he had a gastric bypass (he was morbidly obese) and had a penile implant (yes). I have not seen him since the day my port was placed in July 2012. He walked out the back door and into someone else's house. Since then has lost about 200 lbs and several women have kicked his now skinny ass out for cheating. If you see an very very tall very very skinny old looking male prowling trying to pick up women-run. That cancer is out of my life-but I try to prevent it from entering others. My way of disease prevention.
These estrogen blockers from hell. I need some help. I am a nurse but my clinical history is pediatrics, women's health, and psychiatric nursing. I have never done adult nursing and my oncology nursing has been with children. I have given kids some of the same drugs I received. But I digress. Chemo brain again. So these drugs. For those of you who have been on them for some time-do the side effects go away or at least ease? I started on Femara, switched to another AI, back to Femara, and now to Tamoxifen in hopes for some decrease in SEs. It doesn't seem to matter what time of day I take it-sleep is always an issue. I can go a week to 10 days of being awake until 3-4 am, get up @ 6:40-7 and go to work. Then will hit the wall and sleep for 24 hours and start over. But the muscle/bone pain is always there. Every. Single. Day. My MO keeps me supplied with oxy which I try to avoid. But there are days I take more than one. Getting up in the morning I look like I am about 95 by the way I hobble about. If I sit too long my hips will hardly move to get up. My head hurts almost constantly. Have had vision changes. Bones were fine-had a bone density the same day as first mammo. As a nurse and an educator I went to the current research and found enough research to back the medicine to continue suffering and take it. But also found evidence that while 15% of the persons with BC need the drugs only 5% of the 15% are able to tolerate and take the drug due to the quality of life issues. Which I so understand. My MO wants me on this for @ least 2-3 months. If the SEs do not decrease of if they get worse he wants me to change back to Femara due to the increased benefit for my very aggressive type of BC. I am thinking no. I need some quality. I told my MO during my most recent appointment no more scans. In the past 18 months I have had 2 bone scans, 2 PET scans, a brain MRI, chest CT, abdominal CT, I cannot remember how many MUGA scans-@ least 8-10, 5 ECHOs, a 2 part non-treadmill nuclear stress test, and I cannot remember what else. But enough. If I am upright, breathing and walking and talking @ the same time, and do not have any new growths I do not want scans to look and see. I have had enough nuclear medicine I should glow green and each one adds to the cancer risk.
I need help. I started on the July 2012 chemo thread and the Triple positive thread. I lurk on a couple others. The information on the boards is better than many of my peer reviewed journals. And I have made lifetime friends.
I look forward to meeting the women on this thread
Susan
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hey Susan! Good to see you over here. I've only been on Tamoxifen for 6 ish weeks, no SE other than rashy/pimply skin and ovarian cysts!
But I'm sure some of the ladies who have been taking it longer will come along soon with some great info for you!
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Hi Tamox Sisters. I have not posted in a long time and just wanted to check in. This Friday I will have been on Tamoxifen for 3 years - 2 more to go - yeah! I refuse to do an additional 5 years and will not try the AIs again.
SusanHG123 - I also tried two of the AIs from hell. Tamoxifen hasn't been too bad for me other than multiple uterine issues. I had to have a hysterectomy this past summer. Ovaries were supposed to come out at the same time but the critters have fused to my bladder making it impossible for them to every be removed. Oh well. It is what it is. My only side effect is a few warm flushes. Hope your SEs subside soon.
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Jo.
What kind of uterine issues did you have? I started Effexor prior to the AIs as it is off label for hot flashes related to AIs and tamoxifen. And, I have had some depression with the BC and all the side winding trails I have had with the treatments. The hot/warm flashes have been mild and very tolerable. Will stay on Effexor forever.
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hey susanhg123. when you say oxy, are you saying oxycodone, or oxycontin. i was on arimidex for 6 months, and now i found out in that short time, according to dexa, my bones are mush, and where i was only slightly osteopoenic at base line, now i am full-on osteoporotic. and in such sever pain after three or so months of tami, too, that triage said dr said stop for two weeks, and then call and let them know how i feel. i am only 54, and normally high energy, but NOT since treatments, yet. and tired of hurting everywhere, ready to stop. because if it comes back, then i would do them. so tired of everything about b.c., xcept BCO!!! i asked about what you were using for pain, cause i have never stopped since surgury cause of pain. four 7.5 percocets a day, since sx. and i know that when i need five a day, it is time to talk to onc! i doent know why i keep using apostrophes, it makes me look like i am excited about all of this. thanks
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Thanks, everyone, for your responses about when you started Tamoxifen. I'll speak to my oncologist and see what he says about delaying the start for a few weeks. I'm sure I'll be back to this board soon.
Take care!
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Kathec. I have had both-but now am using oxycodone only. Have 5, 10, and 15mg to choose from. I do not get the oxy mixed with ASA or iBprophen. Just straight narcotic. Works better for me. I always try OTC drugs first. If I am at work and focused on a project sometimes my mind pulls me from the pain pathway. Not often but occasionally. Also have liquid morphine-but have not used in some time. Do not like the way it makes me feel. Also have lorazapam 2mg scored. Generally break in half and sometimes break that in half. I HATE taking the drugs. Worked with substance abuse in my nursing career. Realized I have never worked with a cancer client. Ever. Guess that is because we do not want to take the narcs and avoid them if possible.
We were diagnosed about the same time. I finished 20 of the 52 Herceptin before stopped due to the EF of 35. Still hoping my MO can find a clinical trial to replace the missing doses. Then I might actually stop the estrogen blockers. I cannot imagine felling this bad for another 4.33 years. Actually 9.33 years. I know i will not make it.
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SusanHG123, welcome--what a hard and bouncy ride you've had. No wonder you've had depression issues. That convergence of new BIG job, fateful mammo, and discovering husband's cheating all on the same day, OUCH. I don't have any words of wisdom about the AIs but I just wanted to offer some moral support. I hope you get the right answers and can start to feel better somehow.
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SusanHG123 - OMG! Where do I begin? In June 2011, I had been on Tamox for 6 months and went for my annual pap. On the advice of the ladies here, I asked my gyno to do a transvaginal ultrasound. He wasn't planning on doing it then but I thought it would be good to at least establish a baseline. My doctor said my uterus was very thick and he wanted to do a hysteroscopy (biopsy) and a D&C. Fast forward to June 2012, my annual exam, another ultrasound - which I insisted on having. This time he say something which looked "fuzzy", So another biopsy, D&C AND removal of a 3 cm benign polyp. Enough already!!! On to 2013. I saw my oncologist for my 6 month checkup and at that time I told him I had some post menopausal bleeding. He told me to stop taking Tamoxifen until I saw my gyno which I did later that week. Another ultrasound. With my history of uterine issues to this point, my gyno didn't hesitate. He said I needed a hysterectomy. The plumbing needed to come out. My ovaries could not be removed due to a couple of things. I had an ectopic pregnancy 35 years ago and ended up with a lot of adhesions. The adhesions over the years got wrapped around my ovaries and the ovaries have attached themselved to my bladder. Oh joy! Still have to think about ovarian cancer. Just what I didn't want but have no choice. I don't think about it at all. Not a concern right now. Sorry I went on for so long. I truly believe my situation is not common. I usually don't post this kind of information as I don't want to scare anyone.
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Jo, you are always good about saying your case is not typical--thank you for that. But I'm sorry you had to go through it.
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Jo,
Thank you for sharing your history. My MO-as he was writing the order mentioned the risk of uterine cancer of which I was aware. I looked @ him and said-what is one more risk with all the toxic waste, nuclear medicine, radiation, and who knows what else I have had the past 18 months. He and I have a good relationship. During the first few months when I was chemo only and somewhat of a "teaching tool" he would ask if another student could examine me. One day I said the next time someone better show up with flowers in one hand and a bottle of good scotch in the other. Having taught in health care since the dead sea was just sick I understood the benefit of having a "good patient" so off went the top and bra!
Women i meet on the threads are the most amazing
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"Since the dead sea was just sick" is my new favorite way of saying I'm old!
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And from my perspective, Runfree, you are not!
Yes, a great expression!SusanHG123, welcome...you seem like an incredibly resourceful woman (who has come through a lot). I do hope that Tamox is gentle on you.....
I had the discussion with my onc last week about trying some Ritalin to deal with the cognitive fog that makes it hard for me to complete any projects I might otherwise be able to tackle. I described to her what feels to me like being an elementary school student with executive function disorder. Well, she was not at all put off, and is checking with my other docs, (re: any cardiac concerns) and will likely prescribe it. Fingers crossed.
Meanwhile, the neck itching has returned, which reminds me painfully of the allergies I had all last summer. Am hoping my eyes stay asymptomatic for a while longer.
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Why thank you Lacey! Everything's relative, to be sure.
A friend from elsewhere on BCO has taken Ritalin a bit and found it quite helpful. I hope you get some and I hope it works! So sorry to hear your itching is back. Mine finally (speaking of crossed fingers!) seems to have slunk away. I stopped taking Bactrim 11 days ago and I have not had significant itching, nor any visible rash.
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Ritalin. Nice. And it is being used for those with BC? In the past I could never just sit and watch TV. Now--bring it on. Will add that to my list for next visit. Nice SE is weight loss. Wonder if it can overpower the laughter of the mitochondria in our cells. Be sure to take in the early AM-will add to sleep issues otherwise. Sorry-long time nurse just surfaced.
Thanks for all the nice comments. Some days I feel resourceful. Other days I am Wheezer on Steel Magnolias and just want to punch someone. More days Wheezer.
Told my MO I did not feel old or bad or tired until I turned him and his band of medical junkies loose. Now all I need is wrinkled "stockings" at my ankles, a black handbag, a kleenex stuffed in my sweater sleeve, and glasses with lines. Maybe some black oxfords. And a housedress.
Off to the pharmacy for more drugs for my herceptin attacked heart. I do believe the estrogen blockers from hell were developed by a group of PharmDs who hated their mothers. Would think some of the SEs could be debugged.
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Susan: Thank you for ending my year laughing!!! Wheezer! Hilarious!
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Susan, hahahahaha....and thanks for the comments about Ritalin. Fortunately, (or unfortunately) my caseload over the last twenty years was comprised of so many kids on stimulants, that I'm pretty familiar with the SEs....definitely AM would be the way to go....and I've lost twenty lbs over the last six months (intentionally), no w going for that last ten, so that wouldn't be a problem.
But my intention would not be to use it regularly....mainly when I need to tackle projects, get reading done, etc. My concentration sucks! Hopefully I'll know by next week if MO will prescribe it.Meanwhile, I think I discovered why I have resumed itching. About a week ago, I thought it was clearly safe to delete Zyrtec from my pillbox, given our frozen temps and no vegetation or mold around Not so fast! I started it again today...so we'll see if the itching remits.
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Happy, HEALTHY New Year to you all!
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I know I haven't posted on here much but I did want to mention I've been off Tamoxifen for like 3 weeks and the eyelid problems I had like itchy, scaley eyelids is pretty much gone 100%. I didn't go off intentionally I just forgot a pill and by the next day it was a little better.The eye doctor saw me today and agreed that the dry eye and eyelash loss and this allergy eyelid problem is probably related to Tamoxofin.Not sure what is next but I guess I will discuss that with my MO when I see her.She wanted me to make sure the eye Dr saw me first to make sure it wasn't some other underlying condition.She and I talked about the fact that when they switched the brand that the pharmacy was carrying thats really when my eyes started getting bad.She said it might me possible to continue taking it if the other Teva brand doesn't cause the eyes to get too bad.Not sure I want to take the chance.Not sure what other options I have if I'm not menopausal .
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