Women on Ovarian Suppression + Hormonal Therapy Unite!
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Thanks buttons. Are you still on OSand Aromasin? How long does it take for you to feel OK on them?
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I had the same experience as buttonsmachine. Was on Zoladex for 3 months and feeling good, even through simultaneous radiation. I had hot flashes, which I didn't like but could live with. Then I started on Aromasin and immediately nosedived. Super depressed and exhausted. I upped my Lexapro and that got the emotional side of things under control.
I stuck with that regimen for almost a year, but now I'm with a new integrated team that's trying to help me feel the best I can. I figured out that Lexapro was causing steady weight gain and so now I'm tapering down on that. My new psychiatrist added Wellbutrin which has made such a difference in my energy levels. I've also been taking the thyroid med liothyronine to augment my antidepressant meds. That has helped my energy too.
My MO said she's had good results with women on OS supplementing with testosterone. It was an option we were thinking of pursuing, but I'm doing well now, so it's not necessary for me. But something to be aware of.
I'm also trying to get motivated to exercise regularly. Cedars Sinai has some amazing wellness programs for women with breast cancer. They're run by a guy called Dr. Asher. I had a virtual appointment with him a few weeks ago and he stressed the importance of exercising at a moderate intensity for 150 minutes per week (He defined moderate intensity as exercise where you're still able to talk but not to sing). It makes a huge difference for energy and depression (although results aren't immediate). But also, he said research shows that exercise can reduce risk of recurrence by 30%.
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JRNJ - makes sense that your doctor is having you start right away on the AI since you were already in chemopause. For me, I was already taking tamoxifen, so I stayed on that until we were sure my ovaries were shut down.
So interesting what you read about ILC and tamoxifen. I have IDC with lobular features (which there is almost zero research on), and my MO thinks that's why my cancer has behaved so bizarrely. I wonder if the tamoxifen/ILC link has anything to do with why my cancer recurred. My docs think I had some residual cells from the biopsy, but I'm 100% ER positive, so it was always strange that it was able to grow as much as it did before I found the new lump.0 -
mellee,
It's really great that your MO really cares of your overall wellness! I asked my oncologist about testosterone implant, but unfortunately he has no experience with it.
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Danee, I was on Zoladex and Aromasin together for almost six months. Unfortunately my side effects from Aromasin did not improve during that time. My MO switched me to Zoladex and Faslodex due to other problems from AIs. (I developed terrible trigger thumbs and couldn't even hold cups or drive without significant pain because of Aromasin. I'm still trying to heal from that almost a year later.) Fortunately, I feel much better on Zoladex and Faslodex in many ways. My advice would be don't get too discouraged yet - there are many drugs out there, and adjustments that can be made.
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melee, Sorry you had a recurrence. Do you mind me asking where it was? The Drs. are all saying reconstruction doesn't mask a recurrence, but I'm a little paranoid. I just don't think any of it is clear, they're just doing the best they can. Well respected Drs. have totally different opinions. Clinical trials don't always have that many people or don't follow long term results. Another issue that really bothered me is that lumpectomy automatically gets radiation, usually including the nodes, but mastectomy does not. This makes no sense, it's not consistent!!! Then add in node involvement. If you look at NCCN guidelines they actually recommend considering radiation for 1 to 3 macro nodes with mx, but my surgeon said no radiation and no ALND which gave me severe anxiety after finding out I was node positive. You got the full ALND, so they recommend either one or the other, not both. I wanted the ALND, but let it go when RO recommended radiation.
So Lupron last Wed, I haven't started Aromosin yet. I want to evaluate what Lupron does to me. I feel crappy, my feet, ankles and legs are killing me and I feel agitated and overstimulated, but tired at the same time. Is that just the initial Lupron phase of overstimulation, or is that permanent? Is that with every shot? Does ovary removal do the same thing? Can't wait to add Aromosin!
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I had a skin-sparing mastectomy and my recurrence was right under the skin directly beneath the needle mark from my biopsy. My MO at the time dismissed it as scar tissue and just watched it for 6 months! I figured she'd know if it was suspicious, but I figured wrong. Finally I just had my sister remove it (she's a plastic surgeon) and it was cancer. Margins weren't clear so I had to go in for a wider excision surgery. But mine was an unusual case as it wasn't a true recurrence, but rather residual disease from seeding of cancer cells during my core needle biopsy that gave me my original diagnosis.
I have asked a lot about local recurrences. My understanding is that the most common site of recurrence is in the mastectomy scar. So I would suggest doing a self-exam every once in awhile to see if you feel any hard lumps. I asked about recurrence on the chest wall underneath the implants. I never felt like I got clear answers on that. I did read that it's more common for chest wall recurrences to occur above the implants, especially if your implants are underneath the pec muscles. So eventually I think you'd be able to feel them right under the skin.
For ALND vs radiation (or both), I think you made the right treatment choice. I really wanted to avoid radiation my first go round. It was one of the reasons I chose mastectomy over lumpectomy. Even after getting the ALND, I was in a grey area for radiation. I got different answers from different ROs and decided not to do it for fear of worsening my lymphedema. I ended up having to do radiation after my recurrence anyways, but thankfully found an amazing RO who developed a treatment plan that avoided further damaging the axilla. (I have no idea what your surgeon who said you didn't need either ALND or radiation was smoking. Everyone I consulted with said you at least have to have one or the other if you're node positive. Like you said, the guidelines are clear on that!)
I deeply regret the ALND and am still mad at my surgeon for the lack of informed consent. Research indicates ALND doesn't provide a bigger survival benefit for women like us with 3 or less positive lymph nodes vs radiation alone. I know that it sounds comforting to have the peace of mind of knowing what exactly is going on in your nodes, but for me, the collateral damage has been so great that it doesn't come close to being worth it. The mastectomy recovery was a cakewalk for me compared to the ALND. I couldn't bend my arm straight, I was so weak I would shake when using a fork, and the arm felt like someone else's sewn on to my body. I had very painful cording and then quickly developed mild lymphedema in my upper arm. That lymphedema got much worse out of nowhere last fall and has required extensive PT, wrapping, garments, expensive and time-consuming pneumatic pump treatments, and then surgery in December. It's a lifelong condition that will forever limit what I can do and is incredibly uncomfortable and disabling during flare-ups. My best hope is that it doesn't get worse. I wish I'd had radiation the first go round. It may have even prevented my recurrence. I know we're not supposed to look back, but it's hard not to sometimes.
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mellee, so sorry for what you went through and thanks for the info. I am so disappointed in my medical people also, mistakes, poor communication, lack of information, options, side effects, horrible care in the hospital, etc....... I dumped my BS, I like my RO, I'm iffy about my MO and PS. I really didn't choose not to have ALND, I was not properly informed prior to surgery, but maybe it was for the better. I have arm pain and numbness and none of my Drs. have addressed it, just ignored it pretty much, except my RO gave me dexamethasone, which made me feel great, but I can't stay on that forever, so I've weaned off of it now. Weird thing is I had it pre-surgery, went away post surgery, came back 3 weeks after I completed chemo, before radiation. And now I have horrible aches and pains throughout my body, that I also had presurgery, went away during chemo, and is getting worse with Lupron and I still have not started my Aromosin. I don't know if it's lymphedema, neuropathy, arthritis, all of the them.... My new BS said I should see a Rheumatologist. I'll give it a little more time to heal after radiation and taking new meds. I haven't finished reconstruction, and I'm pretty much a mess, lots of excess skin, crazy big scars. I had TEs put in in the fall, and they were removed due to infection. I realized later they were over the muscle. PS never told me there were different ways to do it. I think under the muscle is safer for recurrence detection, but no Drs. will admit that. So now I have to wait 6 months after radiation and I rethought the whole thing and will try DIEP. So I'm trying to gain weight to avoid implants, lol. I had boost radiation on the scar for 7 days. I can't stop second guessing every decision, I'm just like that. But am generally happy with the treatment I got.
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JRNJ, I do understand what you are going through, all of us do. Hang in there, it will get easier. I had 3 surgeries in 4 months, lupron and AI all together. I recovered from surgeries faster than I thought. Treatments on the other hand seem like never ending aches and pains. I didn't have chemo and/or radiation and am I still adjusting to AI. Takes time and it gets easier. Aches and pains will diminish and I am told the fear of recurrance takes long time.
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JRNJ - It took me a while to find a good treatment team. My first MO turned out to be a disaster. The 2nd MO had a great reputation and I liked her, but she wasn't proactive at all with me. I stayed with her a year and then switched to my current MO, who is absolutely amazing. Just all kinds of ideas about what to try to deal with side effects, optimize my treatment, etc. If you're only iffy about your MO and PS, I highly recommend looking around. Maybe your RO has recommendations? And if you can connect with any breast cancer groups in your area, that's where you'll get the really good referrals.
I had immediate reconstruction but lost one of the implants to infection. So I know how upsetting that is. I had only 1 boob for two months while I waited for the area to heal enough for the second reconstruction (right side Victor, left side Victoria). I have a friend who had a ton of complications following her reconstruction. She subsequently consulted with a bunch of the best plastic surgeons all around the country and learned literally everything there is to know about reconstruction options, risks/benefits of different approaches, etc. She now advocates in this area, so if you would like to talk through your concerns or questions, DM me and I'll be happy to connect the two of you.
Sorry to hear about the aches and pains. It's so hard to figure out what's causing what after all the trauma our bodies have been through. It's not a cure-all, but I've found magnesium to be really helpful for body aches, which I struggled with when I started tamoxifen. I still take 200 mg of Doctor's Best High Absorption Magnesium Glycinate Lysinate at night, since it helps me relax (magnesium glycinate is well absorbed and has less of a laxative effect than other types of magnesium). When I had body aches, I took 400 mg a day. I also like Natural Vitality Calm, which is a magnesium powder you mix in water or juice.
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mellee - Thanks for letting me know about your experience with the 3-month Lupron. I got the 3-month shot a couple days ago since my MO was pushing for it. So far, no increased side effects. We shall see. At least I don't have to go back into the cancer center until September. I have to get surgery next month, so I need time to recover.
Hope everyone is doing well. : )
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Glad to hear it, peridot! Best of luck with your surgery.
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Thanks mellee and lilly. Feeling really lousy right now from the Lupron and still haven't started my Aromosin. Horrible nights sleep last night, with my sleeping pill, headache, agitation, anxiety are all even worse than the aches and pains because I can't relax. And I start work Monday after 8 months so my anxiety is really high. I'm going to try the magnesium. I handled the reconstruction failure pretty good, I was more anxious about an uncertain treatment plan at the time and 2 positive nodes. The antibiotics were making me sicker than the infection so it was a relief to get them out. It allowed me time to research, get another opinion and change the plan. I just didn't realize it would be over a year til I was finished. I have comfy foam ones, lol. I'm sticking with MO for now, because I like him, he is close and pretty flexible. It's some of his staff that I really didn't like and I never saw him during chemo and he is not a BC specialist, he does all cancers. If I have a recurrence I will probably go to Sloan. They have a local treatment facility where I got a second opinion, but surgeries are in the city and I did not want to go in the city. I found every Dr. I have seen has pros and cons.
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JRNJ I had my ovaries removed because I couldn't handle Lupron shots anymore. I am not sure what age are you but you can talk to your doctor and see what he suggests. Honestly, I feel much better since I had this procedure done. Some people do OK with lupron and some don't. Waking up at night time has become part of me and I am glad I'm working from home so I can make up sleeptime in the morning
. I enjoyed getting back to work after all surgeries, meds. etc. because I would keep my mind away from getting worried all the time. Also, when I wake up at night, I have some funny sites in FB and I read something funny and entertaining and helps me go back to sleep. 0 -
JRNJ - I'm sorry about the sleep problems and anxiety. If you're not taking melatonin, I recommend that too. I take 5 mg of a time release form from Natrol to help me stay asleep all night. If you have trouble falling asleep only, quick dissolve formulas work better. You could even combine the two. Experiment with dose as everyone is different in what works for them. Bonus: studies have shown that melatonin may help prevent breast cancer recurrence.
The other product that really works for both going to sleep and getting back to sleep when you're waking up in the middle of the night is Mid-nite (there are drugstore knock-offs too). It has melatonin in it, plus lemon balm, chamomile, and lavender. Mid-nite is more expensive than plain old melatonin so I don't use it as much, but it's pretty great.
The other thing I highly recommend is a good sleep mask. It can really help with sleep and I also find it soothing. I like this one, which is cheap and super comfortable: https://www.amazon.com/gp/product/B01N4GNSX6/
A couple other things you might try for anxiety and sleep:
My husband struggles with anxiety and he swears by two products from Hyland's: Calms Forté at night and Nerve Tonic during the day. They are homeopathic, so I was initially skeptical, but lots of people find them helpful. I often take Calms Forte before bed and it does seem to help me relax and get sleepy.
I also have a friend who started taking Charlotte's Web CBD oil for back pain, and found it helped him tremendously with sleep and anxiety. My husband took it for awhile too and found it helped, though not as dramatically as for our friend. They used the capsules, but now there are extract and gummy options too.
Best of luck as you get back to work!
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JRNJ - Could you tell me more about how you made the decision to remove your ovaries? My last MO didn't recommend it, but my new one said that if I'm not planning to have kids, I might want to think about it.
Did your docs mention any downsides? And what has been your experience before and after? How have your side effects changed?
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Lily, Thanks! Perfect timing, that is the info I was looking for. I was searching up that topic and found some old posts on Lupron vs. oooph that said the same thing you did, although some people didn't notice a difference. I actually decided a long time ago to get them out, and was supposed to last week, but delayed it til August partially due to COVID and honestly because I want to be home with my children at the end of August. After researching more I read Lupron can increase estrogen for 1 to 2 weeks, I thought it was just a few days, their literature is misleading. I also read the ovaries produce testosterone. So I think with Lupron you are getting a hormone imbalance, but with ovary removal you get rid of both hormones. I feel a little bit better, but still feel lousy and not right and still haven't started Aromasin yet. I want to be clear on what Lupron is doing to me. I hope the worst is just the first shot and not every shot.
mellee, thanks for the advice! I've pretty much tried all sleep aides, I've had insomnia for years. I like my Lunesta and have been taking it for several years. Since dx I got a waiver from insurance to take it every day. I was actually sleeping pretty good all through surgery (with Lunesta and vicadin), chemo, and radiation. This Lupron shot is nasty. It kept me awake even with a sleeping pill. I'm sleeping a little better now, but still not a good nights sleep. I wake up with a headache and feeling lousy. I am getting my ovaries out in August. I don't remember exactly, but I think it was my idea. I may have read it on these forums and told my Dr. I wanted them out. I said I don't want to take another medication that might not work and have side effects and even at 54 my ovaries are very strong and have a mind of their own. He just said OK, I agree with you and that was it. My second opinion from Sloan did not agree. She is the one that recommended going straight to AIs and skipping Tamoxifen, but recommended Lupron and AI. So I basically designed my own treatment plan using a hybrid of recommendations from different Drs. I'm kind of glad I'm suffering now on Lupron, so I can be sure later I made the right decision, but also hope I don't feel like this til the end of August.
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JRNJ, I had one MO who recommended to have ovaries removed and the second MO said most of women who have their ovaries removed have less side effects than Lupron. The procedure was easy and GYN who performed the procedure said my ovaries were very healthy but I have no regrets. I had 4 months of Lupron and for me, it didn't get any better. Also, GYN told me Lobular loves to go to ovaries so removing them gives me one less thing to worry about. I don't like to take meds, procedures, surgeries but once I got hit from this disease, my brain setting changed to survival mode. Another thing with Lupron is that MO needs to guess when to stop it because you can't get tested for menopause while you are using Lupron. I used a hybrid treatment plan as well. I was advised for lumpectomy+radiation+tamoxifen. I changed it to BMX+Oophorectomy+Letrozole. I am glad I did BMX since in the other breast was found LCIS that did not show on mammogram or MRI. I refused tamoxifen because my Mom had blood clot after a procedure and tamoxifen does increase the risk for people like me. I have no regrets for my made up plan but time will show. The only regret I may have is for not having the radiation on remaining on lymph nodes since I had 2 positive. MO said the radiologist believed I din't need radiation but I am not sure.
Why did the one from Sloan not agree to have ovaries removed?
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Yeah, to be honest I really had a problem with the concept that lumpectomy automatically gets radiation and mx doesn't unless greater than 3 nodes as told to me by my BS who I later dumped. NCCN guidelines actually recommend either ALND or radiation for 1 to 3 macro nodes, but apparently a lot of Drs. are not aware of that. You have to sort of read between the lines. Luckily I didn't have to fight with my RO, he recommended it because I had LVI. I didn't ask the Sloan Dr. why she did not agree with ovary removal, because my primary goal at that time was determining a chemo plan. I only met with her once as a second opinion and decided to stay with my local MO because he agreed to follow her chemo recommendation and agreed with me regarding the ovaries.
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Hi All. Just wanted to pop on here and introduce myself. I'm about to have my 3rd Lupron shot (monthly) and just finished radiation. Trying to give it time but honestly I feel like I've had every side effect from Lupron and then some. I'm not a fan of being on it up to 5 years (I'm currently 50). MO said let's wait to switch you to AI's until after a month break from radiation so I'm still on tamoxifen to make sure they work together in case the AI's don't. Problem being I got a second diagnosis after being on tamoxifen for less than two years in my right breast (umx-left) so clearly tamoxifen doesn't work for me as well as it should. MO also gave the option of surgery to remove ovaries but I've had 6 surgeries in the last 2 years and oddly my last lumpectomy was the worse experience thus far. I'm really considering it though as the Lupron just seems to have such harsh side effects. I've really appreciated reading through recent posts on here and knowing i'm not alone. I've worked part time through radiation but feel exhausted and lack motivation (not my norm) so now don't know if it is from injections or radiation or both. I'm also curious if anyone has had their ovaries removed and what recovery was like. Were AI side effects helpful or made things worse. I feel fortunate that I've tolerated tamoxifen well (other than leg cramps) but again, it doesn't seem to be effective enough.
I hope you are all staying safe and well
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I am getting ready for my 2nd round of goserlin tomorrow, started Exemestane last week. I’ve noticed my ankles are starting to bother me, I’m trying to determine if it’s a side effect of the meds starting to kick in, or if I’m doing something too hard during my workouts. Plus I’m exhausted, like crying cause I’m so tired and then I feel guilty, cause I don’t want my kids to only have the memory of me sleeping all the time. Any advice on the bone pain or the fatigue?
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Welcome, Blackhawk4.
Sykes, I drink turmeric tea every day and Mellee recommends magnesium as well. My MO said it takes around 4 months for the body to adjust to the new medication. I learned the hard way that you have to take the medication exactly at the same time, otherwise, your hormones start shifting or smth and you'll feel the same symptoms as in the beginning.
Fatigue? Join the club. I also drink Matcha tea that is supposed to be healthy and it has some natural caffeine. There are some other BC sisters here that have other helpful advice as well.
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Blackhawk, I'm assuming you read my posts. I've been on Lupron for 2 weeks and I'm miserable. Way worse than radiation, I was fine during radiation. I'm getting my ovaries out in August. I've heard recovery is pretty easy.
I just started Aromasin yesterday because I decided I should not wait any longer. Yesterday was a nightmare, headache, dizzy, nausea, exhaustion. I started work from home Monday and I fell asleep yesterday watching a video, lol. So today I didn't take it in the morning, I took it about an hour ago. But that might have been a mistake, if I'm up all night. I heard it was better to take it in morning? But my body aches and pains are actually a little better after taking the Aromasin. I read it is the only one of the three that is a steroid. But I'll take body aches over brain disfunction any day. I don't know whether to switch right away or give it time and see if my body adjusts. But my gut is telling me this is not the one for me. I've always reacted bad to SSRIs, melatonin or anything that messes with my brain. My Dr. said Aromosin has the least side effects from what he has seen, but I think that is probably referring to body aches. I also started Magnesium per melee's suggestion. I know two days is not enough time and I need to give it more time. I just don't know if I can work like this. I also read Aromasin is the toughest on cholesterol and the liver. Anyone discuss this with their Drs.? Also I think I am having a mild allergic reaction to it. My eyes watered, and I became all congested and starting sneezing.
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Hi JRNJ,
I'm taking Arimidex (brand name). My first month was mostly normal, my second month was a nightmare (I even wanted to stop treatment ). Now I'm on the middle of my third month, and things are getting slightly better. I take lots of supplements too. As I read, Aromasin is less toxic for bones; Arimidex is slightly easier for cholesterol. All three can affect liver.
Have you checked your cholesterol before starting Aromasin? As for liver enzymes, we have regular blood work, right?
Could you please explain to me this correlation "brain"-"steroids"? As for now, Aromasin is my next choice, but I can't understand the difference between steroidal AI and non-steroidal AI.
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Hi Mika MIka, I meant side effects that alter my brain function. my side effects are severe agitation, dizziness, headache, fatigue, insomnia, swollen nasal congestion, slight nausea, loss of appetite, brainfog, memory loss…. I also have nonbrain side effects such as aches and pains throughout my body. The meds have also increased anxiety and depression substantially. I was doing really well. I was working on house projects and lost all desire to do anything in the house because I don't have the energy. Did you have any of these side effects the first week?
I have my cholesterol checked regularly by my primary, I am on statins. My liver was checked during chemo. I had some elevated liver enzymes but they weren't too worried about it. I stopped statins for a few weeks and my cholesterol went up. I will ask for liver testing, as they screwed that up during chemo and didn't send me tests out regularly. I'm going to ask for an estrogen test. I hope he says yes.
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JRNJ,
Thank you so much for your response!
It seems like we have similar SEs taking different AIs! I got almost all that you mentioned on my second month, even postponed projects.
I've noticed that limiting the amount of added sugars (and gluten) helps me with mood changes and depression.
I have monthly blood work (including estrogen levels) since I started Arimidex. But my estrogen test is not sensitive, it's just showed level <15 (menopausal).
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JRNJ,
I'm sorry to hear that you're having such awful side effects due to Aromasin. I've been on Zoladex + Aromasin for over five years, and my side effects did get better with time, especially the hot flashes. Celexa really helped me out with the brain function issues but wouldn't be of use to you because you've had such a bad experience with SSRIs. Also, I use melatonin to help me sleep, but you have had a bad reaction to that as well! Everyone responds to meds differently; I wish I had some advice to give you. Maybe your MO has some ideas? Best wishes.
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I just had a phone visit with my MO and she told me that if you start AIs at the same time as Zoladex/Lupron, it can actually take longer for your estradiol levels to go down. She says it's best practice to wait 3 months from initiation of ovarian suppression to start your AI. Just thought it was good info to know so I'm sharing it here. My previous MO did this, but didn't tell me why, other than that she wanted to make sure my estrogen was consistently low. I didn't know the timing of AIs could impact anything.
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Thank you for your post Mellee. I wished I knew it before I started letrozole. My MO said to start letrozole after 6 weeks of lupron but 3 months sounds better.
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Thanks melee. Makes me more frustrated with my Drs. and nurses. I'm not getting good information at all. Anyway, hopefully since chemo put me into chemopause it won't make a difference. I see the Dr. in 2 weeks and I'm going to ask for an estrogen test.
Elaine, I take Lunesta for sleep and that is my favorite medication, it really helps. But I get special approval from insurance to take every day and when that ends I'm afraid I might totally freak.
MikaMika, Sugar is the only thing that makes me feel good, lol.
So 3 weeks on Lupron and 1 week on Aromosin and 2 weeks back to work. It's been rough, but I'm feeling a little better. I still feel agitated, can't relax, in combination with being really tired. And of course body aches and pains, but they actually got a little better after taking the Aromosin. I just wish I knew what was really happening and had a good Dr. that could figure it out. From what I read Lupron and Aromosin could increase testosterone in women. I feel like I have a hormone imbalance and I don't know if it is too much estrogen or too much testosterone. I also feel like I'm allergic to the Aromosin. As soon as I starting taking it I've been congested and sneezing a lot, and my ringworm rash that I already had got worse. I also read Aromosin is the only one of the three that is a steroid. Anyone hear that?
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