Women on Ovarian Suppression + Hormonal Therapy Unite!
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I'm sorry I keep changing my name. When I was diagnosed, I went to find some comfort music during my good years and the song "Lily Was Here" by Candy Dufler came to my mind, so here I am and I don't play any instrument
Violet is so right, estrogen is what keeps us women in good shape with skin, hair, etc. looking young and now... we have crossed the bridge and we are in the island of surviving. I was expecting these changes since breast plastic surgeon warned me but I didn't know would happened so fast!
JRNJ, I think talking to someone who does integrative therapy is worthy because they tell us things MO don't. I haven't gained any weight, actually I have lost some and I am eating less because working from home with kids around is not easy for me. Also, cooking is not my thing and we have been living in salads as a family
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Lilly, that's not you in the picture!!! My son plays the sax. Nobody warned me about anything or gave me any info. I get it all here. My face is starting to look more crinkly. Although I don't like feeling fat, I actually need it right now, doing DIEP in January. So I'm actually trying to gain weight, and also starting losing some when I was on aromosin and lupron because I felt so horrible, but eating normal now. I'll try and get in better shape after the surgery. I'm not the exercise type, but my daughter wants to go to the gym with me, so I joined one right before they closed down, lol. I"m also working from home, while kids are remote learning, and I hate cooking. The kids are in soccer and marching band. I"m overwhelmed again and missing quarantine. I'm redoing my basement and just bought a pool/ping pong table.
Violet, I'm just so frustrated with all my Drs. They've all said things that just don't make sense. Really, the numbness and pain in my arms 3 weeks after ending chemo has nothing to do with chemo, the lump in my throat during radiation, that went away after radiation, has nothing to do with radiation, the pains in my body immediately after taking Lupron, and after ovary removal have nothing to do with estrogen, really???
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For me it's very difficult to deal with doctors here, in the USA.
I always expect to get a list of possible SEs and how to prevent or treat them, because doctors have good manners and look really friendly. ))) I am from the Eastern Europe and our doctors are not so polite and friendly, moreover, often rude. On the other hand, they are mostly honest, i.e. " of course this treatment has this and that SE. What did you expect? It's a treatment, not a chocolate cake. You can do this or that, it might be helpful or not. "
So, I screwed up again with my PS.
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hello ladies! I am here to ask if anyone switched from just tamoxifen to OS +AI due to SE’s from tamoxifen. I have been on tamoxifen since February 2019 I have experienced extreme fatigue and what I explain as a lack of feeling any joy in life. I saw the NP at my oncologist appointment yesterday and she actually listened and heard me. My first MO was unsympathetic to any SE’s I was having. She said of course one option was OS+AI. I am just wondering if I would just be trading one SE for a host of others. Also I could of course just quit all together. My first MO told me it would be “very dangerous” to quit the hormone meds. The NP said sine my mammaprint was luminol A and low risk she thought my risk of recurrence was 10%. She said if I had had the oncotype we could have had a better idea, but I didn’t. When I did the predict online tool it shows a 67% survival rate with no hormone treatment. I understand that doesn’t account for the genomic make up but that’s scary!
Ok, sorry for being long winded 😁. I appreciate you reading this! Thank you.
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I was just advised by my MO that there is a shortage of Lupron. Has anyone been told the same? How is your treatment center handling this shortage issue?
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Hi,
I have a Lupron injection scheduled next Friday. As for now they didn't tell me about the shortage.
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Yes, I was told this also. My doctor had to put me on Eligard (which is the same drug as Lupron, just a different brand).
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Is anyone else here on OS+AI or OS+Tamoxifen even though you had a low risk tumor, low Oncotype score, were node negative, and have no family history of breast cancer or genetic issue like BRCA? Everything about my situation is low risk, except perhaps that I was 41 at time of diagnosis. My Oncotype score was 7. I just don't understand why the cancer center went straight to OS+AI.
All I know is that I'm suffering on this drug combination. My sense of vitality has been zapped, I'm agitated and anxious, I feel more depressed (and have a history of severe, chronic depression already), headaches, sensitivity to light and sound, on top of the usual stuff like hot flashes and vaginal dryness. I've been on these drugs for 6 months. I was on the 3 month Lupron, which wore off so I came out of menopause, and now I'm on the one-month shot of Eligard so I'm being plunged back into menopause. I'm miserable and wondering if I should try tamoxifen. Unfortunately, I'm on Wellbutrin and can't tolerate other antidepressants.
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I was told there's a Lupron shortage too. I got my injection last week and they gave me Eligard.
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Danee, I personally found Tamoxifen alone to be much more tolerable than OS and AIs. I think it's definitely worth considering in your situation.
We must all weigh possible benefits with side effects. But quality of life is SO important too. Best wishes to you.
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Are you getting monthly Lupron injections?
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Danee, unless there's something that I'm not understanding about your case, I don't believe the first-line recommendation is for OS + AI. I would get a second opinion.
My cancer was similar to yours (low grade, Her2-, low risk on Mammaprint) but my tumor was bigger and I had 1 macrometastasis and 1 micrometastasis to the lymph nodes. I was 40 when diagnosed. Even with that profile, I was not put on OS. It was offered to me as an option, but the recommendation was tamoxifen.
Only after my recurrence did I go on OS + AI (And mine wasn't a true recurrence, but residual disease from my needle biopsy. If I hadn't had a skin sparing mastectomy or if I had radiation initially to the skin, my MOs don't believe I would have had the second bout - so don't let my recurrence scare you).
Quality of life is so important. Tamoxifen was so much easier for me than Lupron and exemestane. Definitely talk to your MO about it.
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Yes, I am getting monthly Lupron injections.
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Hi Dani, not sure if you ever got a response. My understanding is that OS+AI tends to be more difficult than tamoxifen alone, not easier. I might be taken off OS+AI and put on OS+tamoxifen or just tamoxifen for this reason. What did you decide to do? I'm sorry to hear that you're having a hard time with these drugs.
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I also consider Tamoxifen as an easier regime.
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I just saw my oncologist, and we're having to take me off OS+AI. The side effects were making me too miserable. I've been on this regimen for over 6 months and am still having a laundry list of side effects, and my oncologist wasn't confident that it would get to a tolerable level. Now we have to put me on tamoxifen, which she said is a little less effective than OS+AI. She's going to start me on 5mg for a month, then go to 10mg, then go to the full 20mg dose, so hopefully my body will adjust to it. I'm on Wellbutrin, which interferes with tamoxifen, so we're going to have to figure out how to get me off that. I have a long history of severe depression and have tried many antidepressants without success, so it's unlikely that I'll be able to take one of the antidepressants that don't interfere with tamoxifen. This situation is really scary.
I feel bad, like I failed at something or wasn't tough enough to hang in there with the treatment. I just feel so disappointed. I have severe PMS, which OS was preventing, and now I will have to deal with that again. She said that if I can't handle any hormonal therapy, my odds of developing metastatic disease in the next 10-15 years is something like 10%. I really hope tamoxifen will be my friend and not torture me like OS+AI.
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orangeflower - Do not feel like a failure. Everyone has a limit as to how many side effects they can put up with. For myself, I could not tolerate Lupron, so I had to quit. My MO did not agree with my decision, but I had to do what was best from a quality-of-life standpoint. I just could not live anymore like that on it. I am on just Tamoxifen (have been on it for a year so far) and am handling things much better (however, Tamoxifen has its own set of issues for me which may be causing my particular problem (skin atrophy in my anal area and constant anal fissures... Lupron made it worse, which is why I quit), though I do not know yet... I have to see more specialists next month before deciding to go off of it, too, which scares me). My issues are rare, though.
So don't beat yourself up. I understand how scary it all is. Hang in there and do what is best for you.
As for antidepressants, I had to switch from Prozac to Lexapro (both SSRI's) when I started Tamoxifen since Prozac interacts with Lexapro. I honestly didn't notice much difference. I struggle with depression and was on Prozac since middle school, so it was very difficult to switch. Thankfully, I didn't notice much of a difference between the two. Your experience may be different, though.
Best of luck to you. : )
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Orangeflower, thank you for your response. I decided I would just stay on tamoxifen. I didn’t want to trade one set of SE’s for another. They want me to try taking b12 to see if it helps my fatigue. I hate to hear that you feel like you failed. You absolutely did not. Your quality of life is so important. I hope you do well on tamoxifen. Look at all you have come through and know that even on days when you feel defeated you are in fact stronger than you think 💙. I wish you the best as you transition to your new regimen
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My MO informed me of the shortage as well, we switched from quarterly injections to monthly.
It's nice to see that people are vocal with their MO about the side effects from OS+AI. I have will reach my 1/2 mark through the recommended 10 years. This past week I has an virtual appointment with my MO and sheet me know that I can switch from Anastrozole + Lupron and hop on Tamoxifen if I cant stand the side effects anymore. This would happen sometime this summer.
I got really excited but then started experiencing this significant back pain. I have been working from home without a nice chair or desk and my posture is terrible. However I feel like I should get a scan/test because it has been persistent. Seems like if it not one thing its always something else to get me anxious. 
She told me that I have held out for a while on OS+AI, longer than many of her patients, I was taking it as a compliment but then worried maybe I might have been ignoring my body and how it was not happy. This treatment is taxing on the well being of us patients in general, specifically the side effects seem to change how we partake in our daily life activities. T
his can be a sobering reminder of our cancer alone. It really does get annoying. Listening to you al makes me realize that there is nothing wrong with complaining, if don't who will?
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I stopped taking Lupron a couple months ago or more, but still get hot flashes and still no period. I wonder how long this will stay in my system. : ( My anal fissure problems are still there. I am still tearing no matter what I do. I don't think my estrogen levels have returned to normal. Seeing another colon and rectal surgeon on Wednesday, as well as a gastro doc the week after, since my MO thought they could help and she just didn't want to deal with me anymore. Dermatologist was no help and just told me to put on more ointment that does nothing for me (she was clueless about Tamoxifen and Lupron... she was a young physician's assistant, though, so very inexperienced). This all started with Tamoxifen, so I wonder more and more if that is the true culprit. I was perfectly normal before starting that drug, then Lupron made everything worse. I am scared if it is the problem since going off of it will be a huge risk for me. But I cannot live like this anymore.
This is all so stressful. : ( It is all such a tough decision staying on these drugs when they make you feel so awful.
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peridot180,
I'm sorry to hear that your fissures haven't improved since stopping Lupron and Tamoxifen, and that your doctors haven't found a solution. How frustrating! What % of your cancer's receptors tested positive for estrogen? My cancer was 95% ER+/95% PR+. You'd think that estrogen was driving my cancer, but my oncologist is pretty sure that the overexpression of the HER2 protein was the main culprit. In any case, I'd be less worried about hormonal therapy if my % ER were lower. ((Hugs))
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orangeflower, I feel that way too. I'm still struggling with the ais and feel like a failure that I can't take it. Why can some people take it and not others? I'm taking it every other day now, which is more manageable than every day. But my hands and feet and arms are always numb and in pain. My kids are still 13 and 15. I can't keep up, I can't make dinner, I can't ride a bike...... I'm more reluctant to switch to tamoxifen with ILC, because it is not always effective for ILC by a larger margin than IDC.
Peridot180, my understanding is that the hot flashes are caused by hormone fluctuations, not a particular drug or total lack of estrogen. I don't think it means the Lupron is still in your system, especially if you are on tamoxifen which could cause hormone fluctuations. And my ovary removal and lupron stoppage did not solve all my issues either. It helped some of my symptoms, mostly agitation and headaches, but the pain in my arms and legs got much worse. I don't know what the heck is wrong with me either. All the Drs. tell me arm pain is not a symptom of lack of estrogen, yet 5 days after my ovary removal my arms are throbbing in pain ever since. Can you stop the tamoxifen for 2 weeks to see if it helps? My dr. took me off ais for 2 weeks in the summer when switching from aromasin to arimidex.
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Elaine - I only stopped the Lupron, not the Tamoxifen. I am afraid to stop it. I know how risky it is. I want to seek more specialists and their opinions before going that route. I honestly do not know how much tested positive for estrogen. My oncologist never shared that with me. She barely tells me anything. She just says "it's complicated" and leaves it at that. : ( This is information I need, yet she doesn't really give me it. I'll be looking for a new oncologist after these next few specialist appointments.
JRNJ - I only got hot flashes with Lupron, so it makes me think it is that. I never got hot flashes with Tamoxifen. So it stands to reason that it's probably still the Lupron or my hormones are just all screwed up because I was on it. Many women online (mainly endometriosis patients) said they got hot flashes for a few months after stopping the Lupron and didn't get their period back for quite a while (a few months). I think all these drugs just really screw up everything, even after we quit them.
I am afraid to stop the Tamoxifen since I know how important it is to take it since it reduces your risk of recurrence by 1/3 or more. : ( I really think that might be the culprit. Everything just went to hell after I started it last year. My MO refuses to believe it's related. Hopefully this new colon and rectal surgeon has some ideas, but I am not very hopeful. I need to see a new MO, but want to get these specialist appointments out of the way so he can't just tell me to see more specialists (I'm done after this next one, unless I can get in to see someone in UC San Francisco, but they aren't taking new patients now due to Covid).
I am so sorry to hear you are still struggling with pain. : ( I really hope you feel better soon. *hugs* Messing with hormones just does so much to mess up the body. I don't think a lot of doctors really understand this.
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peridot180. Thanks for the hugs, I needed them!! Hope you find relief. I feel the same way, afraid to stop, but miserable.
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Hi JRNJ,
I'm sorry that you have all these SEs. I see that you are taking Arimidex now. Is it a brand name drug or generic?
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peridot180,
You can request your pathology reports and see all the details regarding ER%, PR%.
I got copies of my pathology reports (after biopsy and mastectomy) from my surgeons.
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MikaMika - Thanks. I will look into that. I have an entire folder of records that they gave me, so it might be located in there. If not, I will talk to my oncologist about and hopefully she's helpful.
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Hi MikaMika, It is a generic. I've heard brand name might be better. And I do feel like my body is acting like I am having an allergic reaction, swelling, congestion. I'm afraid the Dr. will think I'm crazy and annoying, he already does. I just don't feel like a priority. It is a local MO, not a BC specialist. He has patients much worse off than me, much older than me. Always telling me how good I "look" and how I "breezed" through chemo. This is worse than chemo!!!
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JRNJ,
Sending you a big hug and positive vibes. I am an annoying patient too
.I think a brand name drug makes a difference for me. Could you give it a try?
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peridot180,
It's great that you have all your records!
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