Bottle 'o Tamoxifen

BlueKoala

I have been having horrendous upper back/ shoulder pain, especially since getting a silicon prosthetic. I'm going to see a physio about it because I have finally accepted that it isn't going to improve on its own.

lala1

Not sure where to ask this question....I want to get on the picture forum after a long time of not being on it. I have what I think is the link bookmarked but the user ID and passwords from BC.org don't work. Does anyone know if that forum is still in use?

cliff

anyone else get exgiva shots once a month with their daily tamoxifen? my shots give me extreme pain for about 6 days after, different parts of the body each time, but hurts bad. last time I took plenty of ibuprofen before the shot and lots of liquids, didn't seem so bad. another shot tomorrow, trying again.

mellee

Hey lala, I recently signed up for the pictures forum and was able to get on. But due to dealing with other stuff, never posted there. When I went back to sign in with an update on what's been going on with me, I couldn't get in either. I was thinking they might have disabled my account because I wasn't active.

lala1

Thanks, mellee....I was wondering the same thing since I haven't logged on in a year or so even thought I have a whole thread with my results there. Guess I need to figure out who's running things and PM them. If anyone knows who I should contact, could you post here?

farmerlucy

I think it is nowheregirl.

Rubiayat

Farmerlucy - I hope your hysterectomy goes well next week. My mother had one in her 30s (not BC related) and was recently telling me that she felt a certain relief afterwards and the recovery was easy. It is no simple thing to give up part of yourself. Hopefully, there will be less stress from continued biopsies, etc. after the hysterectomy.

farmerlucy

Thank you Rubiayat!

jpr143

farmerlucy: Just wondering how you decided on the hysterectomy? I see you already got rid of your ovaries. I still have all my lady parts but am considering a hysterectomy due to postmenopausal bleeding and pelvic pain while on Tamoxifen. The GYN onc seems to be leaning towards the hysterectomy while my regular onc wants me to stop the tamoxifen, check my FSH levels again(2 prior tests both in menopausal levels) and then possibly switch me to an AI. How do you make this decision! Ugh! I'm 46 and am more than willing to let them have my uterus to stop this pain. But then should I let them take my ovaries too? I worry that if I switch to an AI, I'll just trade one bad side effect for another.

Any thoughts or good articles appreciated!

farmerlucy

jpr - I did the ovaries to get to menopause, eliminate any ovarian cancer risk, and move onto an AI because Tamoxifen was playing tricks on the uterus. A gynonc told me if the uterus is proven benign there is no reason to remove it. Also I was worried about possible incontinence. Fast forward two years, tried Femara (tough), and Arimidex (no way) and the joint stuff and fatigue was too hard for me. I resorted back to the old standby Tamoxifen, which feels like a picnic for me comparatively. However after just a few months I was having light spotting, which I let go for a few months, then called my gyn who did a biopsy and TVU. Pathology called it benign polyps, but my gyn wanted me to have a hysteroscopy next. I basically decided four biopsies, a d&c, numerous TVU, and a hysterscopy in the past four years were enough. I just think that my body makes these polyps, but since I've been on Tamoxifen, any future presentation will take me down the same rabbit hole. I love my gyn but we see too much of each other!

Now, if the pathology of the hysterectomy comes back bad, as it did for my preventive mastectomies, you all are going to have to pick me off the floor. I'm not really concerned. It's not like 1 in 8 get uterine cancer.

Good luck with your decision.

jpr143

Thanks farmerlucy. I started tamoxifen in October 2015 but started having pelvic pain and some discharge after 4 weeks. Since then, I've had numerous cysts, 3 tvus, and a hysterscopy with D&C where they removed a large polyp. The polyp and endometrial sample were all benign which was great. But about 5 weeks after the d & c, my pelvic pain began again and isworse than before and I have spotting several days a week. So, I like you am tired of seeing the GYN and am just ready for some relief!

ARCats

farmerlucy,I'll be in your pocket and you'll be in my prayers that all goes well for you with the hysterectomy.

irp13, Just like farmerlucy and you I'm also going down the path of pelvic pain and bleeding while on Tamoxifen. I'm sorry you've had so many problems and I guess this is the normal progression for some of us with the SE's. This coming Friday I will get my results from the Endo biopsy as my GYN stated that possibly all I have are polyps and will recommend a D&C, and I'm hoping this will be it for me.

farmerlucy

Thanks ARCats!

jpr143

Thanks ARCats. I hope everything goes well and this will be the end of it for you too. I have another tvus tomorrow to make sure nothing bad is seen and then will follow up with the gyn to see if her recommendation is still hysterectomy. For the last week, I have also had soreness over my left ovary and down into groin. Anyone have groin pain too

Farmerlucy, hope all goes well with your hysterectomy! My sister had one years ago and said it was the best decision ever!

lala1

Just to chime in on the hysterectomy option....I had mine Jan 2015 after 2 years on Tamoxifen with ensuing "changes". I have to say, one of the best decisions I ever made. I had ovaries removed as well. The whole thing was done with 3 tiny incisions then removed vaginally so I have a cuff. By day 10 I felt totally normal which actually worries my gyn because he said I'd feel like I could do anything. And he was right. Day 11 had some strong pain in my side. Day 12 in his office and then over to CT for a scan and yep....I pulled a muscle Couple of days of rest and felt great. I walked 30 minutes a day from the first full day home (spent one night in hospital and went home next afternoon), never had the dreaded gas pains, had a BM by day 3 with no problem....etc etc. Now more more bloating and nausea and all the period issues. I do have one caveat....I've been walking around talking about how nice it is not to worry about "those" cancers and I got a call the other day from my gyn. Seems my pap (yep, you still need to have those. You have a vagina, you can get vaginal cancer) was very very slightly abnormal. My HPV test was negative so he's almost certain it was an aberration but now I get to do a repeat in 4 months. Surprisingly, I'm not really that worried. I've had a couple of abnormal results in years past and it was always negative. And now I find that menopause can actually contribute to that so....

Anyway, if you have any questions, I'll be happy to answer. The only real issue I have is the hot flashes and really they are pretty mild and short. I may have 1 during the day and 2-3 at night. I do take iCool per my MO's recommendation and I feel that helps alot. Otherwise, I am feeling better than I did even before BC!

Vickster66

I have had pain all over since I got my first herceptin alone after chemo. I hurt all in my back, arms, legs, fingers, feet and mainly in between my shoulder blades. I am on pain meds which wear off when the pain still continues. I am so tired of the oncologists saying the pain is not a side effect. I have finished the herceptin and I am now on tamoxifen and still hurting all over. Any suggestions to help the pain ?

DCISinAZ

I had a UMX for DCIS and assumed Tamoxifen would be suggested for me. I am 46, no family history of BC. When I went last week for my appointment with my MO, he said no Tamoxifen for me. I am shocked, happy, and scared. I thought Tamoxifen was pretty standard for this but he said no. Any thoughts?

Blownaway

Vickster66 - you have described my pain exactly. It is worse when trying to sleep I have prescriprions for Gabapentin and Tramadol which don't even touch the pain but admittedly, I am concerned about taking higher dosages as I get too doped up. Cymbalta gave me complete relief but I've recently been made aware that it cannot be taken along with Tamoxifen. After being off it for 2 weeks, the pain came back full force in spite of my nightly maintenance med, 600-900 mg Gabapentin . I intend to request Lyrica at my next dr appt and will research "nerve block" - chemo is rough stuff!

lala1

DCISinAZ---Did he say why no Tamoxifen? Did you have the Oncotype test done? That test would tell you your recurrence risk based on taking Tamoxifen. I'm surprised you aren't on it. I just assumed everyone premeno takes it, even if you just have DCIS. I was 49 when diagnosed with no family history either but there was never a question of whether or not my doctor would put me on Tamoxifen and for 10 years at that.

tsoebbin

My Oncotype score came back a ZERO and I am taking it. It's interesting how different doctors look at things differently. Mine wanted me to try it for security and if I had bad SEs then I'd discontinue.

💙💜💛💚

cliff

" DOCTORS DO THINGS DIFFERENTLY" I am glad that my cancer center usually uses a committee to decide treatments.

superius

DCISinAZ, Will you be having Chemo? I think that is usually before Tamoxifen.

NormaJean65

DCISinAZ......your DX doesn't indicate whether you are HERS2 + or -. I was post menopausal when diagnosed at 62 (turned 63 days before surgery). Look at my history below. I was on AI's for a while after chemo but could not stand them with my osteoporosis then was switched to Tamoxifen. Took Tamoxifen for 6 yrs. until the se's became more frequent & longer in duration. Onco wanted me on Tamoxifen for 10yrs but in Jan. this yr. I opted out. Second onco looked over all my tests & said that for women such as myself he doesn't ask for more than 5yrs. BUT if the patient wants 10yrs. he will prescribe it. I decided quality was better than quantity. Most onco do not do the OncoTypeDX on HERS+ as the test was intended for HERS2- otherwise the results may not be conclusive or accurate. In other words, I should have never had it done. Called the first onco on this. My breast score scared me into being submissive and agreeing to any thing they wanted, that is why I asked the question if you knew where you are on being positive or negative. You might consider a second opinion.

DCISinAZ

I only had DCIS and they don't test for HER2 for that. I had a mastectomy and clean margins so no radiation and they don't do chemo for DCIS. I was 46 when diagnosed so still a little bit out from menopause. I am going to ask my husband to ask some MO he knows what they think and I have a message into my breast surgeon.

NormaJean65

DCISinAZ......good luck in finding the answers you need & should have. Sometimes we simply have to research & dig for ourselves. Best wishes to you and your family. I didn't have any family history either of BC. I believe it's all a crap shoot anyway we "shake it".

jpr143

Well I am officially off of Tamoxifen for now. I had another tvus today and ovaries and uterus look normal so the doctor says the Tamoxifen is what is causing my pelvic pain and bleeding which happens at least 3-4 days a week now. I will have an fsh test next month to be sure it is still in the post menopausal range and then see what my onc recommends. If menopausal, an AI. If not, ovarian suppression and an AI? However, if the pelvic issues do not go away, the gynonc suggests I go ahead and have uterus, ovaries and tubes removed. I meet with her again in May to see how it is going.

Glad to have a plan but hoping the AI's se's wont be too bad.

jcn16

Hi DCISinAZ,

I had the exact opposite expectation based upon conversations with my BS after the full pathology following surgery. However I still have one breast and my MO wants me to protect that one. Also I'm 100% ER+. Yours is a great question. Have you asked your MO?

DCISinAZ

jcn16 - Maybe because I was only 50% ER+? Hard to know. I am still waiting to find out some answers.

Beesie

DCISinAZ, have you checked out the responses to the thread you started, with the same question, in the DCIS forum? The answers there are more relevant to your diagnosis.

DCIS and invasive cancer are different, and the risk vs. benefit assessment of Tamoxifen for someone who has had a UMX for DCIS (and even more so, a BMX) is different than it is for someone who has invasive cancer. While some women who have a UMX for DCIS are prescribed Tamoxifen, many are not, and even for those who are, it's pretty much considered optional. So the recommendation you received is not unusual at all, and is in keeping with treatment standards.

cliff

side effects seem different for different people and even guys and gals. the side effects from tamofloxin to me aren't the same, probably due to different plumbing. you should report any suspected side effects to your medical staff. I had a side effect from carvedillo I was taking for congestive heart failure that caused me to black out a half hour after taking it. that got me sent to a neurologist, and almost cost me my drivers liscense when they thought I was epileptic. just a reduction from 35 to 3.5 mg a dose fixed it. also watch for interactions between what you are taking and new prescriptions. its your body, protect it with screami9ng at the doctors if needed.