Bottle o Tamoxifen
Comments
-
I'd love to "get on with my life" but I don't think I should have to tolerate constant pain. My MO just told me to stay off the tamoxifen and is ordering a pelvic ultrasound. Pelvic pain and vaginal discharge are NOT normal on tamoxifen according to him.0 -
Nancy, Sorry to hear of your problems; I was told vaginal discharge is a potential side effect of Tamoxifen which should be investigated. Looks like that is what your MO is doing and that you have been running the gamut of hormone blockers. Sending you best wishes for things clearing up for you. (((Hugs))) Keep in touch and let us know.
0 -
Beaverntx, thank you.
I have always been sensitive to medication and anesthesia. I am not surprised that I've had issues with all the hormone blockers. But this constant pelvic pain is more than I can handle. I'll go back to Femara. I can pretty much control those SEs. Although my MO is perfectly fine with me not taking anything if that's my decision, I feel like if I don't take anything and I have a recurrence, I'll never forgive myself.
0 -
Nancy, totally understand about the pain being intolerable! About taking/not taking the blockers, it is a conundrum for you, isn't it? Hoping you can find a way that supports an improved quality of life.
0 -
Nancy, hope you find a solution that is workable for you. I have been on Tamoxifen for only slightly longer than two months and I also have a pelvic ultrasound scheduled for next week. I have had a constant bleed now for 29 days. So obviously my body isn't too happy with the impacts of Tamoxifen either.
0 -
Anyone having hot flashes very frequently?? I almost get them every hour and its getting so annoying, But from what I’ve read hot flashes are very good sign as tamoxifen is working, Whenever your body feels lack of estrogen hot flashes happen, I’ve read women with more hotflashed have less chance if recurrence... but its so annoying EVERY SINGLE HOUR dealing with that🙈
0 -
Nas- you just nailed my fear! I am having almost no side effects from Tamoxifen. So I am constantly asking myself is this medication working??? I've lost 25 pounds, I have no hot flashes, no joint pain, I sleep well every night, no vaginal dryness and sex drive is still there. What I am experiencing is a little forgetfulness and a little bladder leakage. Neither one of those cause me big issues they are just SO annoying! I still wear sexy panties and fitting a piddle pad in there is a challenge! I had to give up my beautiful bras due to truncal LE so I refuse to lose my panties to!
0 -
For all of you ladies having pelvic pain, I have also experienced this while on Tamoxifen. I have been on Tamoxifen since February 2018, and only minor SE up to this point. I began having pain in my left hip and buttock that extended to the back of my knee a few months ago, I thought it was sciatica since it was a pain that came and went. This past Saturday I began having extreme pain in my left side of my abdomen, just to the inside of my left pelvic bone. I thought it might be gas, however the pain increased overnight and I went to an urgent care on Sunday. They performed a CT scan that showed nothing other then free fluid in my pelvic area, hello doctors the last time I checked you don't have fluid in your abdomen for no reason. They put me on Cipro for a UTI and sent me home. The pain continued and I emailed my GP on Monday evening asking for an ultrasound as I thought it may be my ovary....sometimes googling your symptoms is not a bad idea! My doctor got me in right away on Tuesday and ordered an ultrasound, and a vaginal ultrasound. The Ultrasound discovered a 2.5cm hemmoragic cyst on my left ovary, and a 1.5 cm cyst on my right ovary, and a fibroid in my uterus. I have never had any of these issues until I started Tamoxifen, so yes I absolutely blame it on the drug. I stopped taking it on Saturday night, I will not take this drug from this point forward. My biggest concern is that I have ovarian cancer in my family, my cousin died at 42 with ovarian cancer. I have a gyne appointment next Wednesday to see what the treatment for the issues found will be. I am still in pain, and feel like I am 3 months pregnant from the bloating and gas caused by the cysts.
0 -
Oh Jadalulu, how anxiety producing for you!! Know you are in my prayers. Please keep in touch and hugs for a good outcome.
0 -
Jadalulu, that is upsetting when you have to be your own doctor and get on Google and then squawk for service! Aggravating as hell. I hope they get you fixed up.
Vargadoll, can you please tell us more about your trunk lymphedema and why you had to give up your pretty bras?
At first after radiation I had LE in my arm. Felt awful and sometimes ached very badly. Got a sleeve which is a medieval torture device, I HATE that thing. Was fairly regular about laying on the floor and doing painful stretches which mostly, over a year, luckily resolved the arm LE. But what has not resolved is the LE that persists in the breast, trunk and armpit. By trunk I mean my upper side and down onto the ribs under my boob. That area feels and often looks like someone injected me with water. By end of day I am often in PAIN and everyday since surgery I wake up in pain. The pain in my breast has not gone away since surgery in March 2017. It is constant.
I just spent over $300 on two bras (this is SCANDALOUS for me, I hate shopping and bra shopping in particular because those heinous places never have a liquor license. No one should have to be sober during bra shopping!!) I find that the better the bra fits, the more of my breast that is actually IN the bra, the less swelling and gouge marks on my breast each night. So my boob looks better in a 'good' bra, because the old bras leave a gash from the wire that looks like someone karate chopped a pound of butter. However, the new bras, while not flaring my boob LE, DO flare the trunk LE because they are TIGHT and snug, to hold up these monster boobs of mine. So boob got better but other parts got worse. There is no winning!
0 -
Rah2462 I'll be thinking of you and looking for
your results. Hope all is ok. Fortunately I'm not bleeding. Do you have pain?
Jadalulu, I'm so glad you were proactive. It's so important if we KNOW something isn't right to speak up. Prayers as you go forward...
Runor, having pain and LE that long has to be frustrating. Have you ever had PT? I had some LE and also cording in my armpit a year ago. My RO ordered PT which made a world of difference. Just saw my RT who said the pain I've had around the edge of the breast and under my arm needs PT once again.
0 -
Nancy 618 - thanks for the good thoughts. And no pain for me, just a darn "period" that is going on and on.
Jadalulu - prayers for you and we all know unfortunately we have to push when something just isn't right.
Runor - I am only a little over 3 months out from BMx with immediate recon. The left side is very problematic still for me and I am currently in PT (which has helped tremendously) and am starting medical massage next week. Can't wait for that. I am small but I find a compression bra is the only thing that works for me. I live in the surgical garment they sent me home with at night and a Marena recovery bra during the day. Anything else fires up whatever nerves are still unhappy. Maybe check Marena out? And see if your insurance won't help especially if a doc could prescribe a specific garment? (the compression bra exerts consistent pressure all over which seems to be what helps me the most) There is even a bra that has 3/4 length sleeves so you compress everywhere. I have an appt with my plastic surgeon in two weeks and I am going to show her a pic of it and get her opinion before I order it, however.
0 -
runor,
I'm with you on the bra shopping. That is very high on my list of least favorite things. If not liquor, maybe some wine???
0 -
I had a few breakdowns bra shopping after BMX with DTI reconstruction. A liquor licence wouldn't have helped either as my weekly alcohol allotment is too small to even get a buzz.
I have found now some I like and I guess I'm coming to terms with the size of the reconstructed breasts, but it is a long road. Probably unaided by the emotional effects of tamoxifen! 😊
0 -
hello all I was on Tamoxifen for 5yrs and did have side effects weight gain fatigue several of ones mentioned here But Praise God I am now a 24yr Survivor. idc stage2 0/3 nodes 3mo chemo before n after Lmast reconstruction but body rejected implant after one filling in expander removed. then got married I was 42 we were planning our second marriage at diagnosis. Then 7wks rads 5 yrs on Tamoxifen. Wear prothesis since then. Hang in there. msphil
0 -
Congratulations msphil!
0 -
I was I think pre menopausal. It was hard for me to know because before being diagnosed wiith breast cancer I had been on the depo shot for years for birth control. A week before my 51st bday I found out I had breast cancer it was stage 1 and I was blessed it was found in a mamogram and then verified by an ultrasound it was very small the human touch could not find it. I had radiation 6 weeks to the right breast after a lupectomy. I was put on tamoxifen but it caused me to have a cycle after not having a period for almost 2 years. I felt horrible until I had the period, I was tired, blotted, gained 15 pounds in less then 4 months i felt terrible. I took myself off and started taking Carbinol -3 for 2 years. I have not had any reoccurence in 4 years. I was on tamoxifen less then 2 years and not on tamoxifen for over 2 years. I feel so much better. I felt better after I had the period. I had to switch oncologist because of insurance I really loved him. I was scared he would be upset if he knew i stopped the tamoxifen. I have switched oncologist and i was honest and told him I stop taking it. He asked me how long ago was i diagnosed and I told him 4 years and he said so they are watching it. I said yes. I was going to oncologist every 2 months for 1st two years and then 3 months when i got to 3 years. I am always afraid that maybe I should have not stop taken it. I feel so much better that I can't go back. Now I want to work on my weight. I had my physical in July and everything was great my A1c choloesterol everything so I feel I made the right decision for me. I am 55 now so I know i am post menopausal. Just recently was put on some anxiety medicine to help with hot flashes and sleep and it seems to be working
0 -
I pray the best for you was on tamoxifen I gained weight, fatigue, hot flashes, and a break through period after 16 months. I had a pelvic ultrasound everything was fine. I stop taking the tamoxifen after that and have not taken it for about 2 1/2 year now I am in real menopause and it has been a total of 4 years no reoccurence of breast cancer 1 more year to go to reach my 5 year mark. I know the Lord will get me there. I pray blessings on you that you have no side effects. I think i had the issues because I was pre menopausal and the tamoxifen was trying to put me in it. My body rejected that and I had a period. After the period that last 1 week when I did have them they were only 3 days. After that breakthrough I felt great so that is when I decided to stop the tamoxifen. I was 50 when i was diagnosed 1 week before my 51st bday and now I am 55 and feeling ALIVE!!!!!
0 -
Hi ladies, haven't checked in for awhile.
My SE are still hanging in there. Only thing different is I am losing weight at a shocking pace. Since last February I have lost 32#. I eat like I did before, haven't changed anything. Still have that occasional beer.
My MO did a PET scan last month and looked good but still get worried.
Sorry to see the new ones who joined. Welcome. Sending love n hugs to everyone
0 -
Shelabela, Hope you can figure out the reason for your weight loss and that will mean you no longer need to worry! I've lost about the same amount over the same period of time, but my loss is intentional --changed my diet and increased my exercise. I've known for a long time that for me weight loss involves eating less and moving more. Had let that slip until my BC diagnosis when I decided to do what I could to better control risk factors for recurrence.
0 -
I have some totally unproven theories about the weight loss. I find men always have an easier time shedding pounds than women and I think this is a hormonal issue. With our female hormones being blocked, are more of our male hormones expressing themselves and perhaps they are the reason some of us are losing weight? We all have some natural testosterone in us and maybe with estrogen and progesterone blocked, the effects of testosterone are more pronounced (like chin hair and hair loss). Just a thought that I had. No proof whatsoever.
0 -
runor, that's interesting
0 -
JadaLulu....I had Polycystic Ovarian Syndrome years before my Breast Cancer and taking Tamoxifen. In 2008 I had multiple cysts and a mass in my uterus. I had surgery and everything was beneign at that time. My doctors didn't tell me about the possibility of ovarian issues while on this lovely drug. However, I read on this site that other MOs recommended a baseline ovarian checkup when starting "T". One of my first SE's was ovarian pain. I made a b-line for my Gyno & he ordered an ultrasound & did a complete exam. The U/S showed a small cyst on the left ovary that he is monitoring. So far things are stable. I also have osteopenia so Femara was/is a no go. Overall, the Tamoxifen has more SEs but they seem to trade off. Hot flashes one week, leg & foot pain the next, poor memory & Word recall too. They all have been "tolerable" though not pleasant. After the pain of Femara, I've decided that even with the ovary issues, that I'll try to stay on the Tamoxifen for as long as I can. Hopefully the cyst will remain the same size and no others will grow. Good luck with your appt on Wed
0 -
Shelabela, I, too have experienced weight loss on Tamoxifen. I've been on it a little over 2 months and have lost 10 pounds that I didn't need to lose. My weight loss has stabilized, but that is with effort on my part to add extra protein and (good) calories. And I am not working out heavily because I don't want to lose more. Runor your theory I think has merit. Change in hormones as well as my focus on eating very healthy I hope are the root cause. But it will all be part of the discussion with Gyno and Onc after my pelvic ultrasound tomorrow. Not looking forward to that test.
0 -
Rah, the pelvic ultrasound is not the most pleasant experience, but it is doable-- and you can walk away and go about whatever you want to do afterwards. Hope you get your results promptly. The waiting for results, at least for me, is one of the most stressful parts of this journey we are on. Best wishes for tomorrow.
0 -
I got one for you ladies.
Have you ever experienced a side effect from missing a pill or two?
Runor - that is an interesting theory, I hope my testosterone kicks in soon - for the weight loss only though! 🤣😂🤪
0 -
vampeyes, not at this point from missing a Tamoxifen pill but yes from missing a blood pressure pill! Interesting thought.
0 -
Just started tamoxifen Thursday. It's only Tuesday and I'm really nauseous. Not sure if it is from that, but idk what else it would be. Anybody else have nausea fast from it?
0 -
meowmmy65--I found Tamoxifen to be very dehydrating. I spent months battling nausea and dizziness. Once I started drinking lots of water, both issues went away. I did 5 years on Tamoxifen and am now about 6 months off. I find that I still get very nauseated if I don't drink enough water. I'm assuming that this will be my new normal.
0 -
Beaverntx - thanks for the good wishes. I had my pelvic ultrasound today so awaiting my results.
Meowmmy65 - I was nauseous the first 2 - 3 days I took Tamoxifen as well. My body adjusted pretty quickly as long as I ate a solid meal with the pill (for me it is breakfast oatmeal). I echo what lala1 says - drink lots of water to stay hydrated. I also found a cup of ginger tea really helped me initially. But now that I am a couple months in, no nausea but a nice set of hot flashes!
0
