Women on Ovarian Suppression + Hormonal Therapy Unite!
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I am in 3 months lupron and it is getting worse by day, my lower back is hurting so bad, cramping like pain, all my body is aching and its getting out of control, my doctor suggested shutting down my ovaries by radiation, has anyone heard about that??? He said no need for surgery, in 2 sesiones of radiation we will smash your ovaries... I haven’t heard that befort.. any experience??
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Hi Nas, I was on Lupron shots+Letrozole and after 3 lupron injections, I was having side effects especially in my thinking and clarity. I made e decision to have my ovaries removed. Tomorrow I have a surgery for breast reconstruction and 4 weeks after I will have my ovaries removed and not take Lupron anymore. Letrozole has enough side effects and I am trying to reduce number e medications that come with their own list of side effects. I never heard of radiation of ovaries and if you don't have to do it, why would you go through this route? Consider the surgery. I was told it is only 30 min procedure and there are over 600 thousand women a year that go through this procedure. At least it is not a new and unknown thing. Also, I see you take Tamoxifen. Do you need Lupron with Tamoxifen?
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lily,
Thanks for responding , My doctor continues with tamoxifen as my hormone level hasn’t reached the menopause stage, I am 40 years old and according to my doctor as my body despite 2years of lupron is still pre-menopause stage the best option is to remove my ovaries and start taking Letrizole
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Thanks for the info - How long are you to be on the lupron & arimidex? 5 years? Or do they keep testing you to see if you need to continue Lupron?
Sorry for all the questions!
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Nas- Please make sure the RO discloses all of the possible SEs from this treatment. It sounds terrifying to me! You could also get a second opinion. My MO was pushing for ovary removal, and I didn’t want it. Got second opinion from same doc at Dana Farber who did my original consult, and she said no way! So we switched OS drugs and stayed the course. I like knowing I can come off OS if I need to. You can’t get your ovaries back though!
Good luck with your decision!
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CpeachyMom - Did you go off Tamoxifen and switch to Zoladex?
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Meg- I’m on both.
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Cpeachymom, thank you for your post. I go to Dana Farber too
It was me who suggested to remove ovaries vs Lupron shots. I am not in menopause yet, I have difficulties with Lupron shots that are getting worst. Side effects of removing ovaries are milder. Nas, google Lupron and ask your doctor what she thinks once she has the list of Lupron side effects vs oophemectomy side effects in long term. If you are 40 yr old means you will use Lupron for many years to come. On the other hand, if you want to have kids, you shouldn't do oophemectomy. Side effects and life goals are something you need to decide. I had breat reconstruction surgery this morning and I feel fogy from anestesia. I better go to sleep
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Nas- for what it’s worth, I’ve found Zoladex easier to tolerate than Lupron. It almost feels like Lupron-lite. Often MOs just put us on one or the other because, “That’s what I usually put all my patients on.” (My MO) I also will not let them put me on the 3 month shot. I don’t want that much stuff in my system.
Lilly- hope you recover quickly and your upcoming surgery goes smoothly. I saw Dr. Partridge up there, she’s had my back for just about every decision.
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I heard Dr. Partridge is one of the best! I asked to have her as my MO but she is not taking new patients. I have requested to move to another MO since the one I currently have is not what I would like.
If you don't mind me asking, who is the doctor who worked in your breast reconstruction?
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Anybody here have asthma? I've had an increase in breathing problems, going from illness-induced asthma that only crops up once or twice a year if that, to a cough and asthma symptoms since late August. My GP says that hormone changes can affect asthma, so she suspects that the rapid-onset menopause has just triggered a worsening of symptoms and we just need to keep me on meds year-round now. Has anyone else experienced this? This hormone stuff is full of fun surprises.
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lilly- I did not have recon up there, I had a local PS, he’s in Fall River.
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Ooops....taking tamoxifen 20mg at midnight every night for the past year made it such an automatic activity that thanks to its devastating effects on my memory, tonight I might have taken 2 pills just 15 minutes apart...I am not sure but it is a possibility...now I am freaking out at the thought of a stroke or a blood clot during my sleep...40 mg at once is not big of a deal, right? Thank you in advance for your replies. I wish you all the very best.
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Coeachymom,
what is SO??? Im a bit lost sorry🤦🏻♀️
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Nas- OS= ovarian suppression = Zoladex or Lupron. 😊
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Thanks Cpeachymom🥰
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Hi ladies, I have developed constant dry mouth and scratchy, phlegmy throat since last November (thank goodness no coughing and swollen lymph nodes). All these symptoms are not getting worse or better. I went to ENT doctor last week to have gastroscopy the doctor said my throat looked swollen and looked like it is from allergy. Can this be one of the side effects from my hormonal treatment (2.5 years of Lupron and Aromasin)? I saw somewhere online that Aromasin can cause sore throat. Thank you for all your input!!
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stephilosphy0, do you live in a cold climate? It may be dry air from heating. Also, Lupron kills the estrogen that keep our skin healthy and moisturezed. I have been having dry mouth and throat as well the last couple of months. I am on Lupron and Letrozole that started recently. Doctor told me this combination does kill estrogen and I will suffer from dry skin and thinning of hair.
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stephie,
You are not alone on that, I am having the same symptoms, dried throat, phlegm, swelled muscles in my throat and trouble in swallowing... doctor after checking my throat told me that it could be the result of reflux... I am on lupren+tamoxifen and this combination is extremely strong, Whole my body is struggling with coun side effects
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Nas,
Thank you for your reply, good to know I am not alone with all these symptoms!
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I get zoladex and lethzole and I get dry mouth oh occasions I always put down to morphine and pre gablin xxx
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I too get these symptoms with lupron and Tamoxifen. Dry throat, jaw pain. Thanks ladies I am not alone.
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Hi
I am 36. I got a period just 2 months off chemo. I just started tamoxifen today. MO says we shall start lupron shortly and once hormones are in menopause range then switch to AI from tamoxifen. Is this how its done usually?
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Neeli, I didn't know you need to get Lupron in order to take Tamoxifen. I was a candidate for tamoxifen but because of my predisposition of blood clots, I was moved to plan B: Letrozole. In order to take Letrozole while you are not in menopause, they started me on Lupron to create artificial menopause. That's why I am on Lupron+Letrozole. These are very powerful drugs.
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neeli- yes, that is a good way to do it. It gets you on something preventative right away, then the steps to get you switched over. I never switched to AI, I’m doing okay on Zoladex plus Tamoxifen. Zoladex and Lupron are both used for ovarian suppression. I was having trouble on Lupron but switching to Zoladex helped. It sucks at first, but two years in, I’m doing okay. Good luck!
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Cpeachymom - Thanks for the info. Is Zoladex also a monthly shot? What issues did you face with lupron ?
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neeli- Zoladex is also monthly. After about 5 months on Lupron, I was having blood sugar issues (I’m not diabetic) and my hot flashes started making me nauseous. Assuming 10-15 hot flashes a day, that’s a lot of nausea, and I was not holding my weight. I felt sick a lot. I told my MO that my hot flashes had started coming with a side of nausea, and she took me off the Lupron. I stayed with Tamoxifen and three months later started zoladex.
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I'm going to have my first Lupron injection on Wednesday. I'm really scared. I've read so many awful things about the side effects. I have so many other issues going on in my life that I'm just so afraid. I almost want to cancel my appointment.
Does Zolodex have less side effects or are they about the same? My MO said the needle for the Zolodex is huge and that she is going to give me Lupron instead because I'm a big wuss that sometimes faints when getting my port accessed or my blood drawn.
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peridot- for me the Zoladex is more tolerable, for you it could be different. I still have hot flashes and sleep troubles, just nothing out of the ordinary. Yes, the Zoladex needle is huge. My onc nurses hate giving it. Plus it goes in your stomach. Stick with the Lupron if you don’t like needles.
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Chiming in to say that while the Zoladex needle is big, getting blood drawn hurts more than the Zoladex shot—at least if they numb you with the numbing spray. I don't feel any pain at all (just pressure). Just look away if you don't like needles, and you should be fine.
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