Bottle o Tamoxifen
Comments
-
re heavy periods--I too had super heavy periods, would go through 4 super plus absorbency tampons in an hour kind of bleeding. When I got the OK to ditch my uterus, I fully expected to have fibroids but I did not.
So it may not be fibroids, it may just be your body as it was with mine
0 -
Hi edj3, Good point!! Take care....
0 -
I have PCOS and for me that means I don't have pre or any diabetes but I have lots of cysts on each ovary and I don't have periods (everyone's pcos is different) I've been on the same pcos meds for decades. However, week after radiation ended I bled, heavy. So much so that I went to see my OBgyn, clearly I didn't have any tampons at home, it was heavy bleeding and just a mess. OBGyn confirmed I was having a period! It had been almost a decade (even though I'm not in menopause, nonpwriodsdue to pcos). At least for me I had a weird GYN incident before tamoxifen. Whose to say how all the treatments affect our bodies? We have lots done and just hope for the best.
0 -
I had periods from hell and no sign of them stopping. They were a curse! Asked Onc if tamoxifen would affect my periods. He said no, it would be business as usual. Hah! Boy was he wrong! I have not had a period, a smudige, a smear, a dribble, NOTHING since the first dose of tamox entered by body. It was a 100% immediate shut down of an otherwise full steam ahead period. I would say that tamox most definitely hurled me into full blown menopause (i had zero menopausal signs at time of diagnosis) or I am one of those people on whom tamox has a profound affect. Onc did say that when I go off tamox the periods might come back. Oh, hell no! That has been the only good thing o come out of this cancer experience. The end of periods that controlled my life.
0 -
runor, I did not mind ditching my uterus for that very reason. For the next year, I found all the places I'd stashed emergency supplies, I didn't realize until then how much that bleeding controlled my life. Good riddance.
0 -
When your period is such that you know where every bathroom is along your travel route, and as you say you have emergency supplies in every vehicle and room... it's a problem. I found that regular pads could NOT handle the sudden tsunami of blood that my body would expell, with force, and I constantly had bleed overs. I finally made my own fabric pads. Desperate times call for desperate measures. Of course the fabric washable re-usable pad industry is actually bigger than you can imagine. For a short time I made and sold pads. I still wear pantiliners made of flannel and cotton and a thin layer of bamboo batting in between. I am a lot more comfortable that way and do not chafe and itch like I did with store pads.
If my periods come back I think I will also ditch my uterus. Goodbye, you nuisance thing!0 -
Rosanne - prior authorization for Tamoxifen??? It is shameful how insurance is given a vote in what DRs have prescribed. I wonder if it is because their records show anastrozol, and the two should not be taken at the same time. It is hard enough to go through all this without having insurance making it more stressful. I dropped the "S" bomb last year when talking to insurance, and came very close to using the "F" bomb as well. Felt bad, because I'm sure the person would have fixed the problem if she could, but was limited by the rules of the company. Good luck.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018, stopped Sept 2019.
6/18/2019 Swelling in R-arm, opposite side from where lymph nodes removed. 8/2019-9/2019 scans, biopsies etc revealed tumor in R-axilla. Started Ibrance and Arimidex 9/2019.
1/2020 - Scns showed tumor shrunk. Hooray!!
0 -
flashlight - I do have 2 very small fibroids but they've been there, unchanged on recent ultrasounds (5 in past 4 years), for over a decade. I'm changing GYNs and the person I wanted doesn't take my insurance (she does robotic procedures using DaVinci), but the other provider I chose also came highly recommended by the GYNs I work with now and other medical providers who live in that city, and does vaginal/laparoscopic hysterectomy...assuming I'm headed there. Funny I'm changing from driving 3 hours for GYN to driving 4 hours, but my spouse lives in the city 4 hours away (I guess I do too!) and it's where I go every weekend so that will be more convenient now. I work at a very isolated hospital in the middle of large Native American Indian reservation. Aside form primary care, I travel for all other appts. We have to send our patients off the reservation for chemo, radiation etc, so I obviously had to go far as well.
xo
0 -
Andraxo--I had no prolapse issues at all after my hysterectomy. Just peace.
I will say the one problem I have is that once I need to go, I need to go right then! I just have a hard time holding it. But I've always had that problem albeit not as bad and it seems like most women I talk to have it so I'm sure menopause has a lot to do with it. My GYN said to practice holding my stream while going so I've been doing that for about a month now. Seems to be working....0 -
Thanks lala1 - So many people are telling me they wished they had the hysterectomy sooner and have done well, so I'm glad I'm going to another practice which means getting another opinion. I asked about hysterectomy a few months ago and they only wanted that as a last resort, which didn't make much sense to me given the 4-5 biopsies they put me through in the past 4 years on T. I'd rather be done with those! I also read on a FB group on T that someone recently had a uterine ablation to stop bleeding, but my previous GYN said ablation could mask/hide endometrial cancer down the line.
0 -
I ditched mine at 43, well before this BC stuff. I did it because I never stopped bleeding, and I do not miss it one little bit. (Oddly, no fibroids, I just had heavy never-ending periods).
0 -
Andraxo---At least without all my parts I don't have to worry as much about endometrial cancer, which Tamoxifen increases the risk of, or ovarian cancer or cervical cancer, etc. I do still get yearly paps because my Gyn pointed out that A) you still have a vagina so you could get cancer there and
when they do a hysterectomy there is no guarantee that every single cell was removed so....rogue cells and all could lead to cancer. Now the risk is minuscule but as long as I have my paps I don't worry. 0 -
Well, here is goes. Took my first tamoxifen!! I am part scared and part ready to get started so I can move forward.
I am also taking metformin to help. Did I read on here somewhere that others are taking it too.
Here's to low SE's, great results and a productive relationship with the drug 😉
0 -
rlmessy,
I just took my first one yesterday as well! I cheated and took half and half again today. I’m hoping in a few days to go up to 20mg. I’ve been stalling as I had my surgery Dec. 10th. My mom took it for 5 years with zero side effects, but I’m premenopausal so a little scared😅. I wish us luck
0 -
Badluckbdaygirl - I was thinking about ramping up instead of jumping right into mgs. Honestly, don't know what changed my mind, probably just tired of thinking about things and making decisions I just went for it.
We will have to compare notes as we go along.
0 -
I don’t blame you at all! I’m going to 15 tomorrow. Ready to be at 20 and just deal with it. We should keep each other posted
0 -
Today might be the first time I wondered about going off tamoxifen for a while. The idea flitted into my head and out again and what would prompt this? Fat. I have gained so much weight. At first I was losing weight. But then, I don't know what happened, my gut exploded. I have not had this much gut since I was pregnant. I look awful but worse I feel terrible. I feel thick and squished and uncomfortable. I have always been prone to bigness. But this? This is unprecedented. I walk around in horrible, baggy pants that hang off my ass, but that's because if I pull them up they bite into my gut all day and make me truly miserable, which leads to murderous. I have plumber butt, pants sagging off.
The gut is so huge that I have wondered if I don't have enlarged organs, or a monster growth in my uterus. I know! This sounds bat shit crazy. But what else could explain this massive belly? I know my eating habits are not the best, as in I'm not all kale and organic. But most of our meals are home cooked, not much packaged food, and often I get up at 8:30 and don't eat anything until 2 or later. I live mostly on coffee. Who gains weight on coffee? ME!
Today I went through my closet and hucked out all the clothes I can no longer get into. This is very depressing. Not in a funny way but in a deeply hating myself way. A dreadful disgust with myself. I want to cry when I catch sight of myself in a mirror or window. So I actually thought, maybe I need to go off this shit for a few months and see if I can't get this under control. I need to lose about 40 pounds, not that I could pull that off in a few months. Fat sticks to me like burrs to a dog. But...ugh. A few months off might also clear up the arthritic, swollen knuckles I am suddenly developing. Who knows? I probably won't take time off but sure wish there was some way to quickly and easily not be so damn fat and ugly.0 -
Runor - I started eating antioxidant rich, anti inflammatory food and cut down on carbs and sugar and my symptoms disappeared. I had stiff fingers that I had to use my other hand to move when it got stuck, pain in my feet when I got out of bed in the morning, and Charlie horses during sleep. These symptoms went away and I am now trying to lose 20 pounds. Yes. My stomach is the biggest part of my body. I know it is hard - believe me, I have to come to this site and listen to audio books all day to motivate myself, but take baby steps and You can do it. Something is going on in your gut bacteria that is causing the bloating. I listen to Breasts by Dr. Kristi Funk and Longevity Paradox by Dr. Gundry. I like Dr. Kristi because she is focused on BC. There may be other causes of your gut explosion, so maybe see a doctor.
0 -
Runor - you are not fat or ugly. Weight gain and difficulty losing is so frustrating and often depressing. Strategies really seems to vary on what/what doesn't work, but you can do it. Rxs may exacerbate problems. BC for the third time has me terrified and made me very angry. I have lost 15 pounds since June 2019, and hoping to lose a few more. For me, what works is writing everyting down, what I eat/when, and activity, logging water etc. A lot of work, especially measuring and writing that down. Is there any nutrient I am missing or need more of? Starting out, maybe general descriptions, then get into the details of calories, fat grams, carb grams, fiber grams, water. I found I did eat/snack/nibble/taste more than I thought. I am using a journal called "BodyMinder workout and Exercise Journal, a fitness diary" by MemoryMinder. One criticism, no breakout for fiber, but I do try and break it out. Weight loss has plateauted for a while, I think because I'm not tracking as well as I was a couple of months ago. I also eliminated alcohol. Yes I miss it, but a drink even once/day can add up to 800- 1,000/week. Also making a more serious effort on cutting back added sugar. You can do it.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric(Curcumin), Gluchosamine-Chondroitin,BoneUp(multi with Coligen),Thorne (another multi), Melatonine(at night).
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray
0 -
Bluegirlred - what a journey you have been through. Congratulations for the wonderful Pathology report. That is awesome.
I have to add, I don’t eat much animal protein - not vegan because I eat a little to taste the food I make, and use butter and cheese for flavoring.
0 -
Hey BLB- day
how old was your mom when
she took tamoxifin fir 5 years ?
0 -
runor - have you let your OBgyn know? Cause sudden weight gain can be from gynecological issues and tamoxifen can create these issues. Before throwing out clothes, Iwould leave them a message and get their two cents about it.
0 -
Hi Cassie,
My mom just hit her 6 year mark cancer free. She went off Tamoxifen after 5 1/2 years (took the BCI test that said 5 years was sufficient). She was 67 when she started it. I was surprised she did Tamoxifen. She said they never gave her an option, but believes it's because she has osteoporosis and Tamoxifen worked better. She was perfectly healthy otherwise. She never knew she was on it, albeit my mom is not a worrier or neurotic like me🙄.
I am 46 and my estradiol levels are through the roof along with pretty high ER and PR so Tamoxifen is my drug. I chickened out and split my pills for the last three days and went up to 15 mg today. I had a glass of wine just so I might not know the difference😂
My next step is to get to 20mg for a bit (I have my exchange surgery on Friday) and think about Lupron or something else. It kills me I'm so stressed about the amount of estrogen floating around my body.
I feel the more I learn, the more I need to find out and research
0 -
Badluckbdaygirl....day 4 at the 20mgs and so far so good, knock wood. I am emotional and short tempered but I have been that way since I was dx'd. I am 100% ER positive and like 94% PR positive. I am research low estrogen foods and it is confusing with so many references. I am trying to put together a list of everyday ok food, in moderation foods and then no foods. But I am cross referencing for HER2+ foods and foods and stuff I can eat or take while on Tomoxifen. Its alot.
runor...oh, honey you are not alone. I look like I am a nine months pregnant grandma, well I did before I lost my grey hair. Now I look like a bald pregnant middle aged woman!! I am pretty small all around but my belly sticks out so far!! I am living in sweat pants and t shirts.
0 -
There has been some misunderstanding about Soy product and Tamoxifen but according to my research, the phytoestrogens in soy product is not estrogen and it is good for you while taking Tam. Eg. Organic soy products and miso.
0 -
Foodforbreastcancer.comThis list saids Soy but I have read soy is good for you and does not have estrogen., So I do eat organic soy, tofu, miso products
0 -
Tofu is recommended for breast cancer although it should be avoided during radiation treatment. (link goes to the same site you cited)
BTW I do love that site, so helpful.
0 -
Very interesting article about tofu. I didn't know I shouldn't have eaten it during radiation, but I am sure if I did, it wasn't that much. It'S too late now :
0 -
Well I have to periodically recheck what I've learned from there--I had it in my head that soy was off limits always. Nope. And I hoped grapefruit would be OK for me since I've opted out of tamoxifen. Again nope (with much sadness, I do love grapefruit).
0 -
what is the deal with grapefruit vs other citruses?
0
