Lupron shots and AI- how bad is it?

renbird

Hi BC sisters!

I am 49, healthy, but had a high Oncatype score (36/23% recurrence) and my tumor was grade 3. Luckily, my cancer was Stage One.

I just finished (4) rounds of chemo, no rads needed.

Next, my oncologist wants me to start monthly LUPRON shots for the next 5 years, with AI.

Just curious to hear about your experience with this...

1. Are the Lupron shots painful? Is there bruising? How long does soreness last?

2. Side effects of Lupron?

3. Side effects of AI?

Although I've not had a period in 2 months (during chemo) I 'think' I'd rather do Tamoxifen, and then switch to AI after menopause after maybe 3 years when I'm likely to be in menopause "for real". Thoughts?

Thank you!

-Ren

kathabus

Hi Ren— I started off thinking I was going to just do tamoxifen...but my treatment plan was Lupron shots and letrozole when we found out it went to a lymph node. I actually never did the shots. I just did a hyster/ooph. Not suggesting that....that was just what I wanted and my GYN helped me with the decision.

Anyhow...research the SOFT trial. It explains that Ovary suppression and AIs give better outcomes for premenopausal women. I just thought I’d mention that because it’s important to have that piece of it before you decide between AI and tamoxifen.

Everyone is so different. I have almost no side effects from it at this point. I’ve been on it for6 months. I exercise for 30 minutes everyday. I know it helps.

Anonymous

Ive been taking the shots since November 2019 and if they are painful depends on a few factors. They are injected below the naval line so if you have some fat down there its not too bad. Also, how fast the nurse injects is key - a less experienced/nervous nurse (due to the needle size) may think its smart to go slower when the adverse is true. I was once the training patient for how to give these with the really really good nurse showing another. She said in and out quick was the best way, and she was right; I never had bruising or even pain when she did it.

Last month the nurse went slow and I still have the bruise four weeks later, had a bit of bleeding and it was tender up to two days later, and it was not comfortable. But you grin and bear it because you have no choice. Some places offer numbing cream, or you can get some and do it yourself in advance. Pro-tip -- don't look at the needle or the injection in real time. I just stare at the wall.

The main downside of the shots is how they really constrain your calendar. There is no leeway on them, they MUST be given exactly four weeks apart.That doesn't seem like a big deal until you are arranging vacations or whatever and oh, gotta be back by X date for the shot. I am at least 10 years off menopause and its mostly the scheduling factor that pushed me to ask for ovaries out. That and a 100% estrogen driven tumor and MO was absolutely on board (then the BRCA1 came back positive so now they really have to go). I hoping we can get that done end of March (pending insurance and a bunch of other things).

Side effects of the actual shot - I feel a little bloated for a day or two after. Don't wear constricting clothing in that time period. I may have a few more warm spells in the week or two immediately after, and I can tell when we are getting close to the next month as my mind starts to feel a little crazy - like a mini PMS. I do love not having a period and frankly dont mind menopause as I like the mental evenness it gives me. That being said, my mother only had very very minor menopausal symptoms and it helped chill HER out, so I can get it will be different for others who have more of an issue.

AIs - well, everyone reacts differently. Ive been pretty good on letrozole once I found the brand with the least side effects for me. I also exercise daily and drink a lot of water.

LillyIsHere

Towards the end of 2019, after BMX, I was recommended for Lupron+Letrozole. I refused tamoxifen because my Mom had a blood clot. I did 4 lupron shots for 4 months and honestly, I had a very bad experience. I recovered faster from double mastectomy than from lupron shots . First, they were painful and one time the nurse hit a nerve and for a week, I could barely move my leg. Second, these shots not only dried me up everywhere, but they hit my head that I couldn't think clearly, I couldn't perform my work even my boss told me I wasn't there. Lupron gave me this malignancy feeling overall. I went to 4 MO and one of them suggested I could take ovaries out. I did and in my case, I believe it was a good decision.

To answer your second question, there are many comments about AI. Some sisters have side effects and some don't. I did get unpleasant SE and it got worst in the 6-7 months of starting but it is getting better now. I am not sure it is getting better because my body is getting used to this medication or yoga and acupuncture but I have a feeling a combination of all. In my case, sweets and alcohol increase the side effects of letrozole and I am staying out of these two

Good luck and let us know.

renbird

Hi Kathabus, LillyIsHere, and SondraF-

Thank you all for your honest accounts of your experiences with Tamoxifen/AI/Lupron. Very enlightening.

At 49, although I still had a period for the 1st two rounds of TC chemo, they have been missing Jan and Feb. My onc says chemo 'may' have put me into menopause, but she also says you can never be sure.

*Have/did any of your oncs say they doubted the reliability of testing for estrogen to see if a patient has actually gone into menopause?*

Thanks again! : )

-Renbird

skv0123

Hi! I did Lupron shots for 1 year. I took Tamoxifen for 6mths then tried an AI. I started to feel very depressed and could hardly get out of bed for a week on the AI. I went back to tamoxifen (this was last March) & decided to have my ovaries taken out. I was tired of getting the shots & felt like I wanted to take less medicine, have less appts etc. I just had surgery to take my ovaries out 8/2020

My MO wants me on Tamoxifen for a year from January 2021 so my body can be stable on the same things for a bit. We will talk about trying a different AI in 1 year.

I noticed some increase in vaginal dryness, eye dryness, some weight gain, and joint stiffness after having my ovaries out compared to the Lupron, not a lot but some. I like not having to worry about shots, etc. the Lupron was tolerable. I am not saying you would have to have your ovaries removed, and wanted to share my experience

cmartinperez

Hi Ren,

Just checking in to see if you made a decision and how things are going. I'm 48, just had a right mastectomy. No chemo or radiation but need to decide on Tamoxifen alone, Tamoxifen + Lupron or Letrazole + Lupron. Trying to get as much as possible. I'm hesitant about shutting down my ovaries and adrenals with Lupron.

cmartinperez

Hi,

Why were you switched from Tamoxifen to AI? What side effects did you feel from the Lupron when you were on it? I have to make a decision on my treat in the next week and trying to get as much from you sisters as possible. I'm 48 and a little weary about Lupron.Thanks!

GinamarieZ13

Hi there,

Hope everyone is well. I am 1 year post partial mastectomy with 20 sessions of radiation. As I am pre-menopausal, my MO recommended tamoxifen. It took me awhile to get on board with it and started taking it on 1/1/21. I decided on 10 mg instead of the recommended 20 mg. Started off okay but it immediately messed with my periods and the insomnia and hot flashes began.

Then in early June, I ended up in the ER….diagnosis of 2 DVT’s in my right leg and a small PE in the lower lobe of my right lung. Scary to say the least. I couldn’t believe it and frankly it scared me more than the actual breast cancer. My MO told me to stop taking the tamoxifen. Since then my periods are normal again and I am sleeping much better. I am now taking Eliquis and will continue to do so for a few months.

My MO is now recommending monthly Lupron shots with Arimidex. Given what happened with the tamoxifen I am hesitant to do this now. All of the side effects seem so scary. I already have osteopenia so I am concerned about bone loss and joint pain. I certainly do not want metastatic breast cancer but I feel paralyzed by fear and uncertainty.

Would appreciate hearing from those taking the shots and an AI. Thanks so much.

jennyjo20

Hi Renbird, I can only speak to my own personal experience, but I am tolerating Lupron/Arimidex much better than Tamoxifen. Tamoxifen gave me incredible and crippling anxiety (which I know is not typical). For me, the shots don't hurt at all and I haven't had any bruising.The side effects of Lupron/AI have been hot flashes, mild joint pain in my hands and feet (but only in the morning when I first wake up), moderate vaginal dryness (that for me has been manageable with coconut oil and Medicine Mama V Magic Vulvar Balm), and insomnia. I started ovarian suppression a little over a year ago and almost all of the side effects have either improved or at least leveled off. I would OF COURSE rather not have to take anything, but this is doable for me to reduce my risk of recurrence. I try to exercise daily and I eat a whole foods, plant based diet. I gave up alcohol (other than the rare drink for a special occasion) and I drink LOTS of water. I do my best to minimize stress and prioritize sleep. Prior to my diagnosis, I didn't do any of those things so I think taking better care of myself has helped to offset the side effects of these drugs. I wish you the best in your decision making. It's definitely not easy!

KateHanni

I could not get a dental clearance to take the Lupron shot due to very sudden bone loss in my jaw, probably due to the AI's which I"ve only been on for 3 months. I have many dental implants and one of them is just over 2 years old and the x-ray shows bone loss around it, so dentist refused to "clear me" for the Lupron injections and I do have osteoporosis of the spine and am pre-osteoporotic in my hips. Very disconcerting for me as I've always been athletic and strong!

sunshinegal

I know this thread is a few months old, but thought I'd add my two cents. I've only had one Lupron shot so far (I'm on the 3-month one) but it was painless and without bruising, pain, or other injection site side effects. I'll be doing Lupron for 2 years, then we'll take a break to see if I'm naturally in menopause or not (I was perimenopausal when the recurrence happened).

MO checked estriol levels before starting letrozole to make sure I was in the menopausal range.

Hot flashes are pretty sucky right now. They're mostly at night and are making sleep difficult. Otherwise, no other SE yet.