Women on Ovarian Suppression + Hormonal Therapy Unite!
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curious question for you ladies getting Zoladex-
So I got my injection today, sometimes it bleeds a little, occasionally not at all, one time it bled a lot as soon as he took the needle out. Today, no blood- piece of gauze and a bandaid and I was on my way. I get home, hang up my coat, walk into the kitchen, and my three year old asks, “what’s that red stuff?” I look down and my shirt is soaked in blood, the waistband on my pants was also. Looked like I’d been stabbed. (I guess technically I was!) It had stopped bleeding by the time I got it cleaned up enough to check. I’ve been getting these shots for over a year and this has never happened.
I’m not a bleeder, the shot didn’t hurt any more than usual (I ice, no numbing spray at my place). I had a good sized lump - hematoma probably. I considered going back and having them check it, but in the end i just called and let them know.
Has anyone else had bleeding problems from their shot?? I’m very thin, so they’re careful to get it under the skin and not in the muscle. It was pretty dramatic and I had to let my three year old come watch me change and clean up so that she could see I was ok. It’s still sore now, but that happens sometimes anyway. Suddenly I’m nervous about the next one!
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Thanks everyone. : ) I saw videos on YouTube of the Zolodex needle. Yikes!! Apparently some people have to administer the shot themselves? I could never do that. Just wow...
I guess I'll just give the Lupron a try and see how it goes. I'll definitely be following this thread. You guys are super helpful. : )
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I had my first zolodex shot. The nurse told me not to look. I didn’t and it really did not feel any different then any shot. It has been about a month, Nd I have had no SEs to speak of. Already had hot flashes and they are no worse
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Did any of you get hair loss with Lupron? I just read that's another possible side effect. Also, do any of you get joint pain or be headaches with it?
My appointment is this Wednesday. I don't know if i can do this.
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peridot- It's been my experience that side effects come and go with these meds. When I first started, my hair on my head started to thin, but hair started to grow on my face!! I had to go buy facial hair removal creme. I'm happy to say I only had to use it twice. That lovely side effect went away, and the hair on my head is thicker than when I started, so that recovered nicely. I remember a lot of joint stiffness, only occasional joint pain. I'd get up and hobble around for a bit before things loosened up. That also is mostly gone.
I guess I'm saying give it a try. Don't worry about every side effect you read. Some may happen to you, some may not. Even the ones that do may not last for very long. I had resigned myself to a beard, and that's not how things turned out!
Edited to add- no headaches, but I’m not prone to them either.
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Cpeachymom, did your bleeding stop? What did nurse say? I hope you are feeling better.
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Chiming in on my experiences for those who are contemplating and concerned. I've been on Lupron since Oct 2018, and an AI since Dec 2018. The combo of the two gave me a lot of aches and pains, mood swings, hot flashes, vaginal dryness and pain, a whole mess of side effects. I chipped away at them, here's what helped: acupunture for hot flashes, patience for mood swings, a regimen of imvexxy and hyalogyn for vaginal concerns, walking more and not sitting in my desk chair for over an hour for aches and pains, stretching every night. Things were pretty tolerable, then I started Duloxetine (Cymbalta) for anxiety, and a baby starter dose of 20mg took all my arthralgias away! It was like magic and so good. The shots don't bother me and I take the AI every morning without issue.
My breast surgeon said give it 6 months to get used to side effects. There were times I wanted to quit but since I'd already had a recurrence it seemed so important to give it my all. I felt I owed it to my two little boys. I really feel that now I am in a very sustainable place, it just took work to figure it out, and patience and determination to tough it out while I adjusted.
I know everyone's experience is different, I hope this might reassure those who are fearful or having a tough time that it can be done!
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Thank you Cpeachymom and 2002chickadee for sharing your experiences. It helps to hear different people's experiences. I still don't know if I'm going to go through with it. I will have my appointment tomorrow. I've been going through a bad spell of depression lately and have been overworked at my job, so I may end up putting it off for another week or two. I will have to talk to my oncologist. I just don't want to add one more thing on top of myself right now when I'm already suffering. From what I've ready, the first few months are the hardest. Is that true? Do the side effects dissipate or get worse as time goes on? It seems like different people say different things.
Thank you again for the advice.
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Peridot, I completed 3 shots of lupron. Headaches, depression and anxiety are major side effects for me. We can manage hot flushes as time moves on.2 episodes of migrane for me so far. Complete left side head, face shoulder , arm pain which lasted for 1 day.
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Peridot, I had 4 lupron injections and two months on letrozole. I started one at the time, lupron first and then in 6 weeks letrozole. This month is the only one that I feel normal. Even though I had breast reconstruction surgery 2 weeks ago, I feel much better than when lupron started. As I said before, I am considering to have ovaries removed, works on my case, in order to avoid other lupron. I do think you should give it a try and have patience. It gets better. It is normal to feel sad and overwhelmed. I work too and during December I wasn't myself, but it is gone now and I am doing better and so will you. I do move around all the time even though my job requires to sit down, I do take fish oil, vitamin D and Calcium. Also, I take vitamin B complex that helps with hair, skin, and energy level.
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Hi, I'm 40 (was diagnosed at 38), and I've been taking Tamoxifen for about a year and started monthly Zoladex injections 5 months ago. I haven't noticed any side effects really at this point, some hot flashes that are manageable. On Tamoxifen alone, I did have a thickened uterine lining and some ovarian cysts. Since adding the Zoladex, those are all pretty normal / baseline now. Just sharing my experience!
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Peridot, just wanted to add my experience. I had already been on tamoxifen for several years before I started ovarian suppression (Zoladex not Lupron). I found the adjustment to tamoxifen much more difficult than Zoladex. The only thing I noticed once I started Zoladex was a big increase in hot flashes (which was not fun, but still manageable).
I was on Zoladex for three months before then switching to an AI. Once I started my AI, I really crashed depression wise (depression is a long standing issue I struggle with). I upped my Lexapro and that made all the difference.
I've now been on Zoladex since last March and Aromasin since last June. Hot flashes are an ongoing issue. I'm also getting some breakouts again as if I'm a teenager. I don't feel like my fatigue is any better or worse on this combo than it was on tamoxifen alone.
I don't have any hair loss at this point, which I was noticing on tamoxifen. Also, the moderate aches and pains I had when starting tamoxifen have gotten better. I don't know if that's just my body adjusting over time or from switching medications & treatments.
We've been through a lot so it's hard to sort out what's due to what. But I will say that Zoladex has not been the nightmare I was afraid of. What helped me when I started was knowing that I could stop if I didn't tolerate it. You can always go back to tamoxifen alone if it's too disruptive to your quality of life.
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Thank you all for the help. I truly appreciate listening to your experiences with this. I am beyond terrified. I am seeing my MO today. I am thinking of putting it off for a bit more due to my depression and other issues, but I will see what my MO says.
mellee - Thank you for sharing your experience. May I ask why you didn't go on ovarian suppression right away after starting Tamoxifen? Was it your choice or what your MO wanted? My MO seems to want me to start right away. I've only been on Tamoxifen for a few months. Thankfully, I have done really well with it. I wish I could just stick with that alone, but my MO doesn't seem to want that. : (
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I have had differing amounts of bleeding from the zoladex shot. I am thin and have tried sitting in different positions to make it easier. It bled quite a bit a couple times (onto my pants through the bandage). Other times barely any blood.
I lean forward to create more of an area to pinch. I also apply a about half dollar sized spot of numbing cream about an hour to 45 min before hand. The last 2 injections have gone very well using that technique. Didn't even feel the needle 👍.
A few months ago, I leaned back and I didn't have a very big spot of numbing cream on. I jumped a little when the needle when in (missed the numb spot) and it hurt/burned immediately. It probably got my abs (sore for the rest of the day). I starting the leaning forward technique after that, lol.
Good luck to everyone
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Peridot, I had just turned 40 when I was first diagnosed, my tumor was not aggressive (Grade 1), I was 100% ER positive, and my Mammaprint result came back as low risk of recurrence, so the oncologists I met with all thought tamoxifen alone should be sufficient, even though I was still relatively young when it comes to breast cancer. However, I had a recurrence two years later and that's when I switched to Zoladex plus an AI. For whatever reason, tamoxifen didn't work for me. I've since learned that even if your breast cancer looks "good" (or as good as cancer can look) on paper, being younger makes it more unpredictable. Young age, independent of pathology, is in and of itself a risk factor. So even though I'd passed the technical cut-off of 40, I still ended up with a tricky cancer that has surprised me and my doctors at every turn.
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Hey everyone,
Well, I showed up for my appointment and was ready to get the Lupron (after crying for a while in my doctor's office), but my insurance apparently did not approve it yet. So, I will have to wait a bit longer. In some ways I'm relieved, but in others, I wish I would have gotten it over with. I am tired of thinking about it. They had over 3 weeks to call it into the insurance company. I wish they would have called me and told me that so I didn't have to work myself up for nothing. : ( Not happy.
mellee - Thank you for telling me about your experience. I'm so sorry to hear about your recurrence. It sucks being diagnosed at such a young age. I was diagnosed at 35, so I guess that's why my MO is so insistent on getting the Lupron. I will give it a try. I guess we have to do everything we can to fight this.
So, I guess we'll see when my MO's office calls me back about my insurance. I'll keep everyone updated.
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Going to get the Lupron on Monday now. They wanted me to do it today but I didn't want to get it right before a weekend in case I have a reaction or other problem.
Wish me luck. : ) And thank you again for everyone who shared their experiences. My MO wants me to at least give it a try, so I'll see how it goes. I'm a big crybaby and was sobbing to her in the office the other day while she tried to get me to do the shot. Still scared, but hoping for the best.
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Thinking of you peridot and sending love. It sucks what we have to deal with. Cancer isn't easy at any age, but it seems doubly unfair at a time when we're supposed to be in the prime of life.
Ovarian suppression was scary for me too, but as I mentioned earlier, it hasn't been anywhere near as bad as I feared. Hope you're able to relax this weekend and not stress too much. Wishing you luck for Monday!
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Thanks so much, mellee. : ) Hope you have a good weekend as well.
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buttonsmachine, Divergent and Alden722 thanks for posting about triggerfinger! I have been experiencing it also I think. I went on Anastrozole in early July and in mid August started having some inflammation of all 3 middle fingers on my left hand. Now only the middle finger seems to be a problem, the other two are back to normal. But the middle finger just won't bend normally and gets stuck sometime - so painful. I was hoping it would get better, but seems to be getting worse instead. Thanks for the link to the other page. I have been contemplating trying to see a hand specialist, so I think I am going to call now tomorrow for sure. Hope you all are doing better!
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A note on trigger finger -- my husband had it years ago, there was a pretty minor surgical fix with some subsequent rehab, hasn't bothered him since. So it's not terrible if you do have it, definitely see a specialist though as it can get progressively worse if you ignore it!
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Hi everyone,
I did the Lupron shot today. Honestly, it did not really hurt at all, so that was good at least. But I finally did it...
Hoping and praying for few to zero side effects. Thank you all for your advice and kind words. I really needed that during this difficult time in my life.
Will keep you guys posted. Take care everyone!
~Stephanie
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So glad to hear you got the first shot behind you, Stephanie! It's a big emotional hurdle. I'm with you, hoping your side effects are minimal to non-existent.
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Stephanie - do you recall if you got the Lupron Depot or the 7.5 mg shot?
Thanks 😊
Meg
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Thank you, mellee! Hoping for the best, too.
Meg,
It was just the one-month version. I don't want the three month version because of more side effects and not knowing how it will agree with me. So my MO said the one-month version is best.
~Stephanie
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FYI, the one-month shot is what the TEXT and SOFT trials used (these were the studies that established the survival benefit of ovarian suppression on top of hormonal treatment).
My MO said that she doesn't use the 3-month versions because she was finding that they weren't always reliable in keeping estrogen suppressed in the menopausal range for the full 90 days. So even though it's inconvenient to go in every month, the monthly shot is more reliable and clinically validated.
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Thank you for that mellee! My MO keeps pushing me to switch to the three month and I keep telling her no. I’m not surprised that they’re not as reliable for the full 3 months. It is a pain though. Zoladex actually says the 3 month is not suitable for women, but what do I know? I only actually read these papers.
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Any of you doing kadcyla while on lupron? How many days away from the infusion day would you get the lupron shot? For many days does the lupron side effects last usually?
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Oh my God, Cpeachymom! I didn't realize they actually flat out say 3-month Zoladex isn't indicated for ovarian suppression in the drug literature! I've heard so many stories of MOs pushing it, which is nuts when the data doesn't support its reliability. Our lives are on the line!
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Hi Gals on Monthly Lupron! Do you know if you're getting the 3.75 MG shot or the 7.5 MG monthly shot?
I'm advocating for the 3.75 mg shot as I've seen some on the forum in the past were prescribed that. If the 3.75mg/month is just as effective as the 7.5mg, then I'd of course steer towards the lower end for possible reduced side effects .
Here's the study showing they work the same https://www.ncbi.nlm.nih.gov/pubmed/1606596
Thanks!! WEEE.. Always fun.
Meg
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