Women on Ovarian Suppression + Hormonal Therapy Unite!
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Lupron tomorrow 🤦🏻♀️🤦🏻♀️🤦🏻♀️. Let’s hope there’s no hitting of the vein.
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Good luck!
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Good Luck!!
Mellee, I'm coming back to your post. I am interested in any and all info on helping our skin.
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If you struggle with breakouts or rosacea, I also highly recommend The Ordinary's Niacinamide serum. It's fantastic and only $6!
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Mellee, I'd like the whole routine! I'm a total nerd with essential oils but I'm definitely going to look into some of this stuff!!
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Hi everybody - how are things going for y'all? How did your injection go JoySeeker? Hope not too bad. Mellee how are things continuing to go with the switch? Still crashing emotionally? Been thinking of you and hoping things are improving a bit. Hang in there.
Got the results from my DEXA scan today. Apparently all is normal, which is a surprise and a huge relief given I had lower scores 10 years ago in my 30s. I was dreading hearing the news about Osteopenia or the like, since my mom has had it for over 20 year, plus both my parents have broken hips in their lifetime.
Anyway, with that being clear, Lupron injections start on Tuesday. I'm really really really nervous. Not for the injection itself, I've had a billion and even had to give myself injections for a few years. Not fun but manageable. But am nervous due to all the awful SEs I experienced on Tamoxifen. I really hope I have better luck this route and can keep some type of QOL going. It worries me to see so many of you say that your SEs were "there" on Tamoxifen and a degree of awful to be sure, but that they are now more intense and even less tolearable on your AI. Le Sigh. Send me luck y'all. I have a feeling I'm gonna need it.
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Good Luck Spoonie77. Just want to also say AI is much better for me than Tamoxifen was in regards to SE.
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So I am changing the treatment.
I hate these choices. All are bad, which one to pick up? Anyways...
I am on Zoladex since July last year. Dexa scan in December showed osteoporosis (!!!). Aromasin started this January. Joint pain slowly crept in... untill I had to complain to my MO. After some waiting-and-seeing she suggested to take a short break to see whether it gets better and she suggested a possible switch to Tamoxifen in the future. In this time I had a check up by the bone doctor who stated that my osteoporosis is getting worse.
So I am going to have a tooth pulled out 😣 as a precaution and start bisphosphonates as soon as it heales. I also had an app with my MO who said let's make the switch to Tamoxifen since I already was taking a pause from Aromasin.
So now I am 3 days into Tamoxifen. I am starting slowly. I took 5 pills and made halves. I am going to take 1/2 pills for a week and then I am going to alternate a 1/2pill and a whole pill untill I run out of the halves. Fingers crossed.
I hope the Tamoxifen is going to help my bones a bit. I hope I will be able to tolerate it. I hope it will be enough to keep the cancer away... oh well, one is allowed to hope sometimes...
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Ayr1016 - thank you for sharing that your SEs were less this route than Tamoxifen. Gives me a bit of hope! Woot! Can never have too much of that laying around, can we?
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Hi all, I have been following the discussions here and feel so encouraged by everyone's determined spirit. I want to offer some encouragement to those starting hormonal therapy. I was diagnosed at 39 and so was put on Zoladex (every 3 months) and Tamoxifen. I can honestly say besides the hot flashes I am doing ok on the meds. I am definitely in menopause and have seen my body changing in response, as would be expected with lack of estrogen. But overall feeling well, no explicit SEs. It's early days I guess (almost a year) but I'm really hoping things stay the same.
Best wishes to all.
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How is everyone doing? Mellee, any updates? Here's hoping everyone is enjoying the day and having a low SE afternoon.
As for me, sooooooo it's begun. Saw my MO for the planned discussion on the Lupron + AI. We discussed options, what to expect, plus she answered a TON of my questions without batting an eyelash. There was small change. It had been planned to do Lupron but she decided to do Zoladex. In the end, I signed the consent and even though I am beyond afraid of having another downward spiral like I experienced on Tamoxifen, I'm still more afraid of my 35% METs rate....so I sucked it up and put on my big girl pants. Plus I had some virtual support from some wonderful ladies on BCO in my inbox. That super duper helped.
I asked for the injection to be in my "love handle" area on my back rather than in my belly, and they were agreeable thankfully. I don't know what I was expecting, but I thought it'd be painful to some degree but I didn't feel a thing. I feel more pain when they stick me in my elbow for blood! They iced me up real good and then boom we were done.
I go back July and Aug for the next ones. In Sept, if I can tolerate the Zoladex SEs and my labs show I'm in medical menopause, I'll start Arimidex. So, the journey is underway.
Palesa - thanks for sharing your experience! Hearing the lack of SEs sounds lovely. Fingers crossed that your journey continues on with this minimal amount keeping it tolerable for you as you near and pass your first year. May you sail through the rest!
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Best. Nurse. Ever. I didn’t even get a bruise from Lupron this time!! I am released from cancerland until port Flush and Lupron on the 23rd!! Woop! Woop!
Anyone get the three month shots? Other than weight gain (booooo) I have minimal side effects. I think I would like to do once every three months Lupron if possible.
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I had my lupron shot last Friday, I started having ear clogging since yesterday morning, it’s the first time I am experiencing this since last year that I have started my Lupron shots, does anyone else experience clogged ears after lupron shot???0
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spoonie77, yay! First one down. It only hurts if they do it wrong, so you had a good injection. Stick (no pun lol) with that nurse if possible each time. I'm curious, why the change from Lupron to Zoladex? I'm not familiar with Zoladex but assume they do the same thing.
Joyseeker, I get the 3 month Lupron injections. At first it freaked me out going that long, but it's nice not having to do it monthly. That is AWESOME to get a good nurse. It makes such a huge difference not only physically, but mentally.
Hi Nas. I have not experienced that (yet). I hope someone else can answer.
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Hey Spoonie, so glad to hear your first shot went well! The needle looks scary, but the shot has never hurt for me. Getting blood drawn is definitely worse. Hopefully, you won't have side effects that are too bad. For me, it was mainly hot flashes. We talked upthread about portable fans and they definitely work! (this is the one I have: https://www.amazon.com/OPOLAR-Handheld-Rechargeable-Batteries-activities/dp/B076KHJPCC/ref=sr_1_6?keywords=opolar+portable+fan&qid=1562124019&s=gateway&sr=8-6)
As for my reaction to Aromasin, I upped my antidepressant (I'm on Lexapro) and that's helped a lot. My mood is much better and my body isn't so achey. I even think it's helping reduce my hot flashes. Only issue is that it makes me sleepy, so it's not the best for fatigue/energy. I have an Rx for Provigil, but I don't like it. It makes me ragey. So I'm sticking to caffeine and hoping things level out. I'd love not to be so tired!
Nas - I've heard that some women experience ear changes during menopause, so I wouldn't be surprised if the shots are causing the blocked sensation.
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Spoonie, do you know why they're putting you on Arimidex? The two MOs I talked to only gave me the option of Aromasin (exemestane). They didn't say why and I didn't ask about other options, so I'm just curious.
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Thanks for the update Mellee. Have been wondering how you were doing. Glad to read that things are a bit on the upswing! I'm sure you are relieved. Sorry that Provigil wasn't helpful. Salmanadra suggested that on another thread so I was thinking that immediately when I read your post, but ugggh no luck. Being ragey is no fun. I do not suggest it. LOL. Umm I think Lewhy mentioned being switched to Concerta to help with the fatigue when Provigil didn't help. Maybe that might be something to look into?
As far as the Arimidex choice, I actually have no real idea why my MO chose that. I think I recall her nurse via portal saying that was her normal protocol because in studies less patients have intolerable SEs that route. IDK for sure though. I will put in on the list of questions I have for her. Did your MO mention at all why they went with ARomasin? It could be just the differences in the MO preferences to be honest. Oh, and a YR1016, that was the reason for the change from Lupron to Zoladex too. Her nurses had told me via Portal that it would be Lupron but I guess they were mistaken, she likes to go with Zoladex first.
Also, not sure if anyone may be interested but while I was researching info on Lupron, I came across a drug called Orilissa, which is brand new, approved in 2018. Does the same thing I believe and is currently being used for Endometriosis like Lupron and the like originally started off as. I think if for some reason I have SEs on Zola I may ask my MO if this is an option. Anyway, something to keep in mind down the road.
Anyway, sorry if I'm rambling, rewarded myself with my favorite wine and some chocolate cake tonight for taking another big scary step today. Ahhhh wine tastes so good when you haven't had any in 3 months! Cheers everyone.
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Has anyone had issues with their blood calcium levels creeping up? Since I started Zoladex and Femara I've been taking calcium supplements with Vitamin D. My last CBC showed slightly elevated calcium. In April it was also slightly elevated. I put a call into my MO, but I'm curious if anyone else experienced this.
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Spoonie, the cake and wine look amazing! Hope you had a great night. As for Aromasin, no one told me why that was the choice. I'll ask next time I see my MO.
Fritzmylove, I watch my labs like a hawk so curious to hear what you find out. I did read that if you're supplementing with vitamin D, sometimes calcium can get too high.
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Mellee - yeah, last night was relaxing. Feels good to have the worry & research part of the new journey over. Now to see what the future brings.
Hey FritzMyLove - I did a bit of Googling about calcium levels on OS + AI's, I am a curious cat.
I found some issues relating to Hypercalcimia, could be helpful but I doubt without high high levels it's severe. There is a chart below that maybe your lab levels may fall into range for normal still? Hope so. Oh, for EVERYONE, while snooping about calicum levels, I did find a REALLY helpful chart of all breast cancer medications (looks like providers would refer to it) but I'm saving it. Thought I'd pass it along to the rest of y'all as well. (partial chart at bottom of post, link here)
Cancer Related Hypercalcemia (Journal of Oncology Practice)
"Hypercalcemia is categorized according to the serum total calcium level1: mild hypercalcemia, 10.5 to 11.9 mg/dL; moderate hypercalcemia, 12 to 13.9 mg/dL; and severe hypercalcemia, ≥ 14 mg/dL. Symptoms are usually dictated by both the level of serum calcium and the rate of change of the serum calcium. Mild or indolent hypercalcemia can be asymptomatic, or it can be associated with mild nonspecific symptoms such as lethargy and musculoskeletal pain. In contrast, severe, rapidly progressive hypercalcemia can be associated with significant volume depletion and acute renal insufficiency, as well as dramatic neurocognitive symptoms ranging from altered mental status to coma.Hypercalcemia is a result of abnormalities in the normal bone formation and degradation cycle. Bone mineralization is a well-balanced constant cycle of bone formation stimulated by osteoblasts and bone breakdown (or resorption) stimulated through osteoclasts. During normal bone turnover, osteoclast activity is regulated by the binding of RANK surface receptor on the osteoclast to the receptor activator RANKL on the osteoblast. This binding of RANK/RANKL regulates osteoclastogenesis. Osteoprotegerin is secreted by osteoblasts and strongly inhibits bone resorption by binding to RANKL, thereby blocking the interaction between RANK/RANKL. If the interaction between RANK and RANKL is disrupted or blocked, then the osteoclasts do not mature. If there is increased interaction between RANK and RANKL, then there is more osteoclastic expression and more bone resorption.5,6
Calcium homeostasis is tightly regulated by many hormones, including parathyroid hormone (PTH), 1,25-dihydroxy vitamin D (1,25[OH]2D), calcitonin, serum calcium, and serum phosphorus.7,8 PTH is produced by the parathyroid glands. It both increases serum calcium and decreases serum phosphorus via direct and indirect stimuli of osteoclasts. It increases renal calcium absorption and decreases renal phosphorus absorption. PTH also stimulates the conversion of 25-hydroxy vitamin D (25[OH]D) to 1,25(OH)2D in the kidneys through 1-α-hydroxylase, which results in increased intestinal absorption of both calcium and phosphate.7,8"
"A Practical Approach To Hypercalcemia" (American Family Physican)
So since I'm not a doctor, my lay person view of what this all means is that since on OS + AI there's obviously a lot of hormone changes going on which directly can/do impact bone formation/degradation (hence Osteoporosis warnings on AIs), so this all seems plausible to me that it could be normal/expected to see changes in calcium levels. Only your team would know though, of course. I'm just Googling. LOL.
I guess if it were me, I wouldn't be alarmed but do as you did, and let your team know. I'm sure they will konw what needs to be followed or whether it's just a non-worrisome blip. Hope that's all it is. Keep us posted.
Partial Chart of Interactions and Lab Effects/Interference-- seems handy!
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That chart is super helpful. Thank you!!
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mellee,
My MO chose Zoladex + Aromasin because they were the meds in the SOFT study. She thought that insurance would be more likely to pay for them. But, that was four years ago, and the SOFT study had just come out.
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This reminds me: everyone who is on Zoladex or Lupron should be aware of the risk of prolonged QT interval, which is a heart rhythm abnormality that can be dangerous. Prolonged QT interval increases the risk of developing torsades de pointes (TdP), a ventricular arrhythmia that can lead to sudden cardiac death.
It is not a well known issue. Even my fantastic MO who has a stellar reputation in LA had never heard of it. I stumbled on it when I put all my meds & supplements into a drug interaction checker (I used this one at Medscape). I found out that Zoladex and my antidepressant Lexapro are contraindicated because of it. I'm still taking both, but I had to get an EKG to get cleared.
Here's what MedicineNet says about QT prolongation and goserelin/Zoladex (Lupron has similar issues):
"Goserelin may cause a condition that affects the heart rhythm (QT prolongation). QT prolongation can infrequently result in serious (rarely fatal) fast/irregular heartbeat and other symptoms (such as severe dizziness, fainting) that need medical attention right away. The risk of QT prolongation may be increased if you have certain medical conditions or are taking other drugs that may cause QT prolongation. Before using goserelin, tell your doctor or pharmacist of all the drugs you take and if you have any of the following conditions: certain heart problems (heart failure, slow heartbeat, QT prolongation in the EKG), family history of certain heart problems (QT prolongation in the EKG, sudden cardiac death). Low levels of potassium or magnesium in the blood may also increase your risk of QT prolongation. This risk may increase if you use certain drugs (such as diuretics/"water pills") or if you have conditions such as severe sweating, diarrhea, or vomiting."
Concurrent use of more than one drug known to cause prolonged QT increases the risk for TdP, so it's important to check everything you're taking out and discuss with your doctor. Lots of common drugs, including antibiotics, antidepressants, anti-anxiety meds, antihistamines, anti-nausea pills like Zofran, etc. are on the list.
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Thanks, Elaine! I bet that's why since they both talked about SOFT. I'll confirm.
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Spoonie, wow! Thanks for all the information!! I was able to speak to my MO’s nurse, who relayed a message from him. I was told that my calcium is still considered “in the normal range” even though it falls just outside the range given on the lab results. (According to the chart you posted I fall within normal at 10.4.) It could be the supplement messing with my levels, but he still wants me to to take them. It could also be a reaction from the hormone meds since the upward trend started right around the time I started Zoladex and Femara. All my other results came back normal, which is good.The nurse was sure to tell me that he is 0% concerned, but will keep an eye on future labs.
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Thanks Mellee for the heads up about the QT Long info. I have heart issues to begin with, abnormal rhythms and a murmur, so I will be sure to let my MO know if I notice anything amiss. I wonder if I should also let them know I have a family history of Congestive Heart Failure and Heart Disease/Atttacks? Hmmm.
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Has anyone ever looked through FDA Label: Zoladex (PDF)?
Was looking up info on tumor flares from Zoladex and came across this info (below). Helpful IMO.
Oh, and so yeah, I'm havin a heck of a day...<rolls eyes>. Today I found a 1/2 pea sized lump (not red, just nipple skin color no pain, but solid) on the underside of my nipple. It wasn't there a few days ago when I did my check. Took a pict. Will see what it does with a few days. But, tumor flares can happen first few weeks of Zoladex and I'm trying not to freak out and think that I had like a micro something or other and now it's flaring. Eeeekkk.
Did any of you notice any new lumps after getting your first injections?
"6.6 Breast Cancer
The adverse event profile for women with advanced breast cancer treated with ZOLADEX is consistent with the profile described above for women treated with ZOLADEX for endometriosis (see below in 6.4). In a controlled clinical trial (SWOG–8692) comparing ZOLADEX with oophorectomy in premenopausal and perimenopausal women with advanced breast cancer, the following events were reported at a frequency of 5% or greater in either treatment group regardless of causality.
In the Phase II clinical trial program in 333 pre- and perimenopausal women with advanced breast cancer, hot flashes were reported in 75.9% of patients and decreased libido was noted in 47.7% of patients. These two adverse events reflect the pharmacological actions of ZOLADEX.
In the Phase II clinical trial program in 333 pre- and perimenopausal women with advanced breast cancer, hot flashes were reported in 75.9% of patients and decreased libido was noted in 47.7% of patients. These two adverse events reflect the pharmacological actions of ZOLADEX.
Injection site reactions were reported in less than 1% of patients.
6.4 Endometriosis
In controlled clinical trials comparing ZOLADEX every 28 days and danazol daily for the treatment of endometriosis, the following events were reported at a frequency of 5% or greater:
The following adverse events not already listed above were reported at a frequency of 1% or greater, regardless of causality, in ZOLADEX-treated women from all clinical trials: WHOLE BODY - allergic reaction, chest pain, fever, malaise; CARDIOVASCULAR - hemorrhage, hypertension, migraine, palpitations, tachycardia; DIGESTIVE - anorexia, constipation, diarrhea, dry mouth, dyspepsia, flatulence; HEMATOLOGIC - ecchymosis; METABOLIC AND NUTRITIONAL - edema; MUSCULOSKELETAL - arthralgia, joint disorder; CNS - anxiety, paresthesia, somnolence, thinking abnormal; RESPIRATORY - bronchitis, cough increased, epistaxis, rhinitis, sinusitis; SKIN - alopecia, dry skin, rash, skin discoloration; SPECIAL SENSES - amblyopia, dry eyes; UROGENITAL - dysmenorrhea, urinary frequency, urinary tract infection, vaginal hemorrhage."
6.9 Changes in Laboratory Values During Treatment
"Plasma Enzymes: Elevation of liver enzymes (AST, ALT) have been reported in female patients exposed to ZOLADEX (representing less than 1% of all patients).
Lipids: In a controlled trial, ZOLADEX therapy resulted in a minor, but statistically significant effect on serum lipids. In patients treated for endometriosis at 6 months following initiation of therapy, danazol treatment resulted in a mean increase in LDL cholesterol of 33.3 mg/dL and a decrease in HDL cholesterol of 21.3 mg/dL compared to increases of 21.3 and 2.7 mg/dL in LDL cholesterol and HDL cholesterol, respectively, for ZOLADEX-treated patients. Triglycerides increased by 8.0 mg/dL in ZOLADEX-treated patients compared to a decrease of 8.9 mg/dL in danazol-treated patients.
In patients treated for endometriosis, ZOLADEX increased total cholesterol and LDL cholesterol during 6 months of treatment. However, ZOLADEX therapy resulted in HDL cholesterol levels which were significantly higher relative to danazol therapy. At the end of 6 months of treatment, HDL cholesterol fractions (HDL2 and HDL3) were decreased by 13.5 and 7.7 mg/dL, respectively, for danazol-treated patients compared to treatment increases of 1.9 and 0.8 mg/dL, respectively, for ZOLADEX-treated patients."
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Hi Spoonie,
Yes, definitely talk to your MO about the QT prolongation. I think the protocol would be to get a baseline EKG and then monitor to make sure the Zoladex isn't making it worse.
So sorry to hear about your lump scare. It's the worst not knowing if something is normal/benign or not, so I hope you can get it checked out and set your mind at ease soon. I don't know much about tumor flare, but try not to jump to worst-case scenarios (easier said than done, I know!). Hormone changes can cause cysts, so it could easily be something benign. But I would definitely show your MO and get an ultrasound and biopsy if necessary. Don't make the mistake I did of putting it off. My MO was convinced my lump was scar tissue and just observed it for 9 months. Turned out to be a recurrence at the needly biopsy site 😬. I'm not saying that's what's happening with you, but better safe than sorry!
I had a rough 4th as well. I found out that a woman I befriended during radiation died. It was sudden and unexpected. It hit me really hard. She went through so much and it's just so freaking unfair. I'm even more devastated because I hadn't checked on her in a couple of weeks. I've just been feeling so crappy and things like that fell through the cracks. Then, the day before she died she came into my head so strongly that I needed to call her and see how she was doing. I put it off, and now she's gone. That's a really bitter pill for me to swallow. My husband and I left the party we were at in Orange County because we obviously weren't in a festive mood anymore. But as we drove back to Los Angeles along the 5 we experienced the greatest fireworks show we've ever seen. There were fireworks to our right and left and up ahead the whole drive. It was incredible. My husband said it felt like a celebration of her life.
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On June 24 I received my first ovarian suppression shot and yesterday I started my period. I haven’t had a period since a year ago. My MO checked my estrogen levels a week prior to receiving the shot and they have come up since the first time he checked them in December, therefore recommended the ovarian suppression along with an AI. I’m very confused about why I would start my period now. I have a call into my MO about this and will have to wait until Monday to hear back since he wasn’t in the office on Friday. Any thoughts on this or similar experiences would be so appreciated!
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Christiekoe, I am having a similar issue. I had no periods during chemo. Started spotting on 3 weeks out chemo. This has been going on for 6 weeks. Got my second Zoladex shot earlier this week. My bloodwork prior to this shot indicated that I was in menopause. An US shows nothing out of the ordinary. CT in April was normal. Because of the spotting my MO decided start me on tamoxifen just to get me on something while waiting for the spotting to run it's course. So frustrating. Hope your MO can shed some light on your situation.
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