Women on Ovarian Suppression + Hormonal Therapy Unite!
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JRNJ,
I'm trying to figure out this "steroidal" nature of Aromasin. Unfortunately, I didn't find simple explanation for patients.
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That’s so interesting that some of your doctors had you start Lupron or Zoladex first and then start the aromatase inhibitor weeks or months later. My oncologist told me to start both at the same time. I felt dreadful for about six weeks. It’s starting to get a little bit better but is still difficult with the fatigue, emotional flatness, headaches, hot flashes, loss of libido. It’s been nine weeks since I started the meds.
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Danee, the AI will not work at all until the ovarian suppression shot has kicked in, usually about 4-6 wks. It might not have been harmful to start the AI at the same time but was essentially wasted pills...
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So I am officially joining you ladies. After being on tamoxifen for a year and dealing with awful ovarian cysts, pelvic pain and terrible bleeding, I consulted with a gynecological oncologist and we decided on a hysterectomy with oophrectomy. I did 4 months of lupron before my surgery to “trial" menopause before surgical and I hated every minute of how the lupron (not menopause symptoms) made me feel. While on lupron I continued with tamoxifen. I had my hysterectomy 12 days ago and will see my medical oncologist tomorrow. I am going to guess she will switch me to an AI so I'm a bit anxious about my appointment tomorrow. She was not fully supportive of the hysterectomy, hinting that it was an overkill...she also didn't have to deal with the intense pain of the cysts and then after lupron, my migraines that came back and 3 days after the shot of feeling blah and flu like. Any guess on what I will be on? Any other hystersisters out there
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Hi Jen2Mom, I felt the same with Lupron and that's why I decided to remove my ovaries. I didn't go though hysterectomy and now I regret it. It may be overkill for some doctors because they are trained to prescribe medications but we are the ones dealing with side effects of medications. I have gone through the same path as you. When I decided BMX and oophorectomy, that I have no regrets at all, I read so many celebrities with famous doctors who went through the same paths as us. Sometimes I wonder if doctors make extras when they prescribe medications vs. surgeries. If I could substitute 7 years of letrozole with a surgery, I would do it in a blink!
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After discussing the risks and benefits of starting an AI or staying on Tamoxifen with my oncologist, we decided to stay on the Tamoxifen. My side effects from the tamoxifen were gynecological in nature and with that “taken care of” through the hysterectomy, we decided to not try the AIs at this time due to the possible side effects of those.
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Hope everyone is doing okay, the weather is getting warmer and warmer. It seems like my flashes are occurring more often.
@Jen2mom Im happy you have the option to opt out. Some women do better with just tamoxifen.
I had my quarterly Lupron this week and had a few moods changes the day after. Crying, moodiness, tiredness etc. This feels like a rollercoaster.
Last night I looked up the risk of someone with my profile stopping at year 5. Im getting tired of the side effects. Of course it shows my chance of recurrence is much higher if decide to stop the medicine altogether. As a 31 year old my MO wants be to have a fighting chance so 10 years will benefit me most.
The weight gain, hot flashes and small mood changes are what bothers me the most.
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I was taking Tamoxifen for about 2 years when all of the sudden I got a blood clot in my leg. Turns out that I am in the .2% of people that got a blood clot on Tamoxifen. I am pre menopausal, so I started getting the Goserelin injection about 4 months ago and was switched to Arimidex as well. Why am I still having heavy periods???? My oncologist suggested an oopherectomy, but I want it all out. I am so over all of this. The joint pain, muscle pain, and lower back pain is taking its toll on me and I am wondering why I am going through all of this for an extra 2-3% decrease in reoccurance. Ugh.
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Littlebee72, as much as I hate medications, 3% reoccurance is higher than .2% you got blood clot on tamoxifen. I wouldn't stop if I was you. This is what I tell myself everyday because I can't stand the side effects of letrozle I'm taking. Honestly, I am happy I had oopherectomy since the side effects of lupron as OS were unbearable for me.
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Hi everyone,
This is an embarrassing issue and I hate posting this, but I have been struggling with anal fissures for the past several months. It all seemed to start when I started taking Tamoxifen and got worse when I began Lupron injections. I had surgery 4 weeks ago, but have not been doing well still. The fissures are having trouble healing. My Colon and rectal surgeon said I have very thin skin with lots of cracking in the anal area, probably due to chemo. I had fissures almost all through chemo (it was HORRIBLE!), but they healed shortly after I stopped the chemo, so I don't know if that's related or not. I had the problem reoccur some months later after I started Tamoxifen. I don't know if it's a coincidence or not.
I've heard menopause can make it harder to heal and cause drying of the skin due to lack of estrogen. I'm not sure about thinning. I was just wondering if anyone has had these issues.
Honestly, if the Lupron and/or Tamoxifen is contributing to this problem, I will stop taking both. I don't care anymore. I cannot live like this. It has been hell and I have no quality of life.
Thanks for listening. Sorry for bringing up such an embarrassing issue, but this has been what I've been struggling with for the past few months and I am losing hope. : (
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Peridot, there is nothing embarrassing in here. We are all in the same club of awful tests and side effects. Reminds me when I start breastfeeding my kids. In beginning, I was embarrassed to do it in pediatrician's office. In few months I had no problem to show my boobs in mall, train stations, parks... I didn't care anymore.
I don't have any similar experience you are having and I am not a doctor but I'm learning that estrogen suppression causes the immune to go down. That makes me think that you are not able to heal easy. Also, stool softeners my help. You take them as pills, they are sold over the counter and are perfectly safe, and will help you passing stools easy to give your skin a chance to heal. Lots of olive oil in your diet will help as well. Hugs.
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Thank you, Lilly. I really appreciate the kind words. : )
I forgot to mention that I don't struggle with constipation. I tend to have really soft stool naturally from my healthy diet. So, unfortunately, stool softeners would not benefit me. Even when I have soft stool, I still seem to tear. : ( That's how thin the skin is.
If the lack of estrogen is indeed doing this to me and causing me to have trouble healing in that area, I will probably have to stop the Lupron and possibly the Tamoxifen. Like I said, I cannot live like this.
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Peridot, lack of estrogen can indeed cause skin thinning and slow healing. it's why most doctors tell their patients not to start hormonal therapy until they are healed from radiation. You may want to discuss with your doctor at least taking a break from the meds to allow yourself healing time. You can always re-start later.
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Peridot, I wonder if Juven might help you heal? I used it after surgery on the recommendation of several surgeons. My dad is also a physician who runs a wound center and they use it for their patients who are having trouble healing. It's kind of pricey, but it can make a big difference even in a couple of weeks. They recently updated the formula and it includes collagen now, which should also help.
For quickest results, drink 2 per day. But 1 a day can make a difference, if you want to stretch them out longer:
https://www.amazon.com/Juven-Therapeutic-Nutrition...0 -
Thank you. BCat40. I will discuss that with my oncologist. Unfortunately, I got the 3-month Lupron injection about a month and a half ago, so I have to wait until the beginning of September to discuss things with my MO. : ( I really wish I didn't do that, but with the pandemic going on, I didn't have much of a choice and with getting surgery, I thought it would have been for the best so I didn't have to deal with coming into the cancer center. I really regret that decision now, ugh.
mellee - Thank you for the link! I will check that out. I can use any help I can get right now. I just wish it wasn't so pricey. : ( I'm wondering if they sell this in stores. I don't ever recall seeing it.
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Saw my colon and rectal surgeon yesterday and he said that Lupron can indeed cause thinning skin and make it more difficult to heal. He suggested I stop, even if it's just temporary, so I can heal. He also said Tamoxifen shouldn't be a problem, so I should continue that. He said estrogen is important for skin health and healing.
So, guess I will be stopping the Lupron. I thought I was doing well on it, but I guess not. I just want to get better, but have to wait another month and a half for this to be out of my system. I'm sure my MO won't be happy about this, but I can't live like this anymore.
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peridot, I'm sorry you had that problem - it sounds really terrible!
Different situation and drugs, but that's how I felt when my hands got destroyed on Aromasin - I just couldn't live like that anymore. My MO switched me to Faslodex, which has been much better for me.
I hope your MO has some helpful input when the time comes, and that you feel better soon.
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Thank you for the kind words, buttonsmachine. : )
Yes, these drugs can really do a number on us. I understand they are meant to help us and prevent recurrences and I'm grateful for that, but at what cost? This is just where I draw the line. I can't stand being in pain every day and never knowing when I'm going to heal. I can't concentrate on my job and I can't enjoy things like I used to. I fear using the toilet every day and that's no way to live. The surgery I got should help, but if the skin doesn't improve, it will be really difficult. I need to give my body a fighting chance to get better.
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Peridot, I'm glad your surgeon at least had a useful answer for you and would support your position with your MO. I doubt a few month break from the lupron will make a big difference in your cancer care.
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BCat40 - Thank you. : ) I hope so. I just wonder how long it will take to get it out of my system. Some people said it might take a few months, at least for your period to come back. I haven't been on the Lupron that long, though. I would think estrogen levels would begin to rise again once it gets out of the system. Still kicking myself for getting the 3-month-shot, but I didn't know this was all related to that at the time. Just have to wait it out.
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Hello Sisters,
I've been on Zoladex/Letrozole for over 6 years with a few Zoladex/Tamoxifen prior. So far (knock on wood) the treatment has been effective with tolerable side effects. My onco has several times suggested having my ovaries removed and I am at the point of serious consideration.
Of those whom have had this procedure done (or hysterectomy), what has your experience been and would you recommend it over getting monthly injections?
Thank you very much,
Kat
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Kat, it depends of your age. If you are young and want to have kids, once you have ovaries removed you can't go back. I asked to have my ovaries removed since I had difficult time with Lupron shots and I am done with kids. Also, since I was considered peri-menopausal, doctors don't really know when is the time to stop lupron. Removing the ovaries was very easy for me. A tooth root canal is more difficult
. Also, I was told from the GYN who preformed the surgery and MO that women who have ovaries removed have less hot flashes than OS. I barely have any hot flash here and there but very minor. I'm sure other sisters may have other ideas.
May I ask you why did you have bone radiation for?
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Hi Lilly,
Thanks for your message. I turn 50 today (Woot woot!!) so child bearing is not a concern. My mother had a hysterectomy plus in her 40s so not sure when she went through menopause, but my onco thinks I have at least 5 more years of hormonal suppression. So here I am wondering if it is a good option for me. My hot flashes were not terrible. Also, would it make sense to remove my uterus while I was at it?
As for my back, the cancer metastasized into my spine and cracked two of my vertebrae.
`k
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Happy Birthday!
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Thank you! xoxoxo! It's a victory to turn 50!
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Please remind us when you'll turn 95
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Happy birthday, Katharella! To many many more!
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Thank you so much! xoxo
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I started taking Tamoxifen 7 months ago. I had a pelvic ultrasound a couple months ago and discovered a few fibroids, cyst on my ovary & thickening of the uterine lining. I started Lupron 3 months ago & I want to switch to an AI. My question is, has anyone been successful in shrinking or reversing these uterine issues by switching to an AI instead of continuing on T? My MO says it's too soon to switch but I am trying to avoid a hysterectomy so I want to switch now.
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Got a call from my MO and she seems to think the Lupron is not the cause of my fissure problem not healing. I don't know what else it could be, though, since my issue got worse from the moment I started it and my colon and rectal surgeon told me to stop it. To top everything off, I had my first bone scan done and I have osteoporosis in my hip. I'm only 36. : ( I don't know how much more bad news I can take right now. My MO didn't even care about my fissure problem. She doesn't understand the pain this causes me. She just keeps telling me to go see a psychologist.
Sorry. I just need to vent. I can't take much more.
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