Women on Ovarian Suppression + Hormonal Therapy Unite!
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Thanks for your imput. I'm confused about his aggressive stance too and will be getting a second opinion for sure!
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I am wondering if dehydration affect CBC results. I didn't eat and drink for 10+ hours before my recent CBC test. Shockingly almost all the results went up compared to 3 months ago, especially Iron and LDL cholesterol they went up quite a lot! Inflammation test ESR is also above normal. Should I be concerned?
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How is everyone doing?
I'm really struggling with the exemestane and Zoladex. It's bad enough that I've considered stopping it and going back to tamoxifen. But then I wonder if I should give it more time. I've been on the Zoladex since April (so 6 months), and the exemestane since June (4 months).
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mellee, I started off with Tamoxifen alone. When my period came back 8 months later, I went on Tam/ZOL for one month with no side effects. After one month my MO switched me to exemestane/ZOL and I was ok for a couple of months, then started having severe side effects and dizziness to the point that I had to switch back to Tam/ZOL. I was adamant to try an AI again, my MO wasn't too happy with too much back and forth, so I stayed on Tam/ZOL for another 18 months and then switched to Arimidex/ZOL. I've been on this combo for about 18 months with minimal side effects except the usual hot flash, dryness etc. My theory is that either sudden and severe estrogen depletion was too much for my body, but after some time on ovarian suppression my body was ready for an AI or it's possible that Arimidex agrees with me better. You could consider switching to another AI.
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ErenTo, interesting... So do you think you're doing better mainly because your body adapted over time, or do you think it's that you do better on Arimidex compared to exemestane? Or a bit of both?
If you don't mind my asking, what were the other bad side effects on exemestane beyond the dizziness?
For me, I'm fatigued, feel mentally foggy, and I got super depressed (although after upping my antidepressant, that is under control).
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mellee, it could be both, but I've seen many people switch to a different AI and feel better. Exemestane is the trial drug and I think that's why most MOs start off with it. Note that it's also a steroidal AI which is a bit different than the other two, so I'm not sure if that plays a role in side effect profile or not.
My side effects were really strange and gradually got worse, and my MO didn't think they were from exemestane! But once I stopped, I gradually started to feel better and eventually went back to my normal. I'd have sudden and random lightheadedness, often triggered by some form of external factor such as coffee, hot weather, being stuck in traffic, boring meetings, etc. and would feel that I was going to collapse (never did). It was probably a severe form of hot flash. It was gradually becoming more severe, debilitating, frequent and lasting longer. I also had tingling in my fingers, arms and toes which later became so uncontrollable that once my coffee cup fell off my hand while walking on the street, as I had no control over it. I actually went to ER right away (was scared of brain met). But the ER doctor just told me that most likely it's because of this medication.
Towards the end, for one whole week, as soon as I would go to bed I'd have all over severe body throbbing to the point that I couldn't sleep at all. I think it had some kind of neurological impact on me. Really weird. I stopped for 10 days and went back on tamoxifen. It took a while for the symptoms to completely go away, maybe 2-3 months. It also took about 2 months for the symptoms to appear actually.
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That reminds me that I had some weird neurological issues at first too. For several months, my feet tingled/went numb when I would go on my daily walks. It eventually went away but it was really disconcerting!
I'm going to do some research in the differences between the AIs and talk to my MO. I'll report back if I find out anything that might be helpful.
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mellee, Aromasin and Zoladex were brutal for me. I was on Zoladex alone with no trouble for months, so I blame the Aromasin. The last straw was that I started losing hand function due to tendon damage from the Aromasin - supposedly that's rare, but it's extremely painful and had significant impact on my daily function. I'm still trying to recover from that, and had to be sent to a hand specialist doctor.
My MO contemplated switching to another AI, but said it would probably create the same problem. My MO suggested Faslodex instead. I'm only a month in, but so far it's much better than Aromasin, at least for me. I'm hoping I can stay on Faslodex for a long time. I'll never take Aromasin again.
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Buttonsmachine, I just was talking to a woman I met here on the boards about the incredible pain and trigger finger she had in her hands from Aromasin. She has to see a hand surgeon for it. I hope you get relief soon!
I have never been told that Faslodex is an option. Do you have any side effects from it that you notice? And do you know what the pros and cons are as opposed to continuing with an AI?
For me, my big issues are fatigue, depression, poor sleep, and crazy intense hot flashes. I did notice hot flashes on the Zoladex (like you I was on it for 3 months before starting the AI) but they've become really frequent and overpowering since starting the AI. My MO thought this was just the Zoladex "kicking in" but that didn't make a lot of sense to me, as my estradiol numbers went down below 2 in the first month. I'm convinced it's the Aromasin making it worse (and hot flashes are listed as a side effect!). I've handled my depression by doubling my SSRI dose, but I'd like to taper back down.
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I lasted 6 months on Aromasin with Zoladex. The amount of pain was just... absurd. I was on Zoladex for 6 months with minor issues like hot flashes. After I started Aromasin, joint pain gradually crept in. I didn't know there are so many joints in the hand untill all of them started aching and even waking me up.... Now I am on Tamoxifen since June and feel much better.
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I haven't had joint pain yet, although sometimes my hands feel tight. I feel lucky in that regard! But it's only been 4 months so I'll keep an eye on my symptoms.
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mellee, my MO said that Faslodex isn't typically used in the curative setting at this time, but in my situation it made sense. My MO was able to make the case to my insurance company, I think partly because I've had local recurrences. My hands were so bad that my MO thought that switching from Aromasin to Letrozole was not a viable option right now. My MO also said that although going back on Tamoxifen is an option, that option is not very reassuring because I had local recurrences while on it. My MO thinks Tamoxifen would be better than nothing, but that Faslodex would be better than Tamoxifen. That is how we arrived at Faslodex.
As you know, every drug is different for every person, and we all have different risks and benefits in taking hormone drugs. Subjectively speaking I can say that Faslodex is better for me so far. The injections are not fun, but no worse than Zoladex. In comparing Aromasin and Faslodex, these are the biggest differences: on Faslodex I do not have the depression that came with Aromasin. I also have less joint pain, I can sleep better, I have less fatigue, and I can think a little more clearly. Most importantly, my hands are better, although they are still healing. I do still have hot flashes, and the typical estrogen-deprivation symptoms on Faslodex, but on Aromasin the side effects were more extreme. One day at a time. I hope you find a good solution.
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I'm so glad you're doing better on the Faslodex and that your doctor was able to work with your insurance like that. I hope your hands fully heal soon!
I'm going to stick out Aromasin for a little longer, or maybe see about trying another AI. But it's good to know there are other possibilities out there for us.
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Curious, how long did it take anyone taking Tamoxifen to start noticing side effects. I just started mine yesterday and so far so good. I have not noticed anything at all so far.
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Hey Jenni, if I recall, I noticed within the first month. The first symptom that started for me was night sweats. And that was my main issue the whole time I was on tamoxifen. I had some mild joint pain too, all noticeable within 4-6 weeks. The night sweats went away over time, but they were pretty bad at first. I recommend getting moisture wicking sheets if you have that issue (PeachSkinSheets is good).
When I started exemestane, I experienced major fatigue and depression within a week.
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Hey ladies! Just checking in-I am also on Zoladex and exemestane and am having some joint issues. My right thumb is “locked” straight and won’t bend, or rather it will bend but it’s super painful.
Am currently on a one week break from exemestane and taking 800mg prescription Ibuprofen to see what happens. I told my onc I’m staying on this med no matter what, so we’ll see. Overall it hasn’t been that bad. I think some of the joint pain and muscle stiffness are due to the lack of estrogen in that I feel old now!
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Hi Misha, sorry to hear about the joint pain and thumb issues you're experiencing. Joint pain is really common on the AIs. This article gives a pretty helpful overview:
Apparently, switching to another AI can often help, although they're not sure why. Antidepressants can also help with pain in general, so that might be something to talk to your doctor about.
Also, have you been tested for Vitamin D deficiency? There's some evidence that vitamin D supplementation can help with AI-induced joint pain.
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Anyone who has been tested for TSH as well as estradiol while on Lupron or Zoladex?
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Yes, I just got the full thyroid panel. My TSH has gone from 2.3 a year ago to 4.69 which is outside the reference range.
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Thank you, mellee. I meant to ask if anyone who is on Lupron or Zoladex has been tested for FSH (Follicle Stimulating Hormone) in addition to estradiol. I guess I have had one too many lab tests which got me confused. My estradiol is very low, but FSH still shows that I am pre-menopausal.
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I know the feeling! No, I am not being tested for FSH. I just get the estradiol ultrasensitive test.
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I get tested for FSH. My levels are slowly climbing, but don't fall in the post-menopausal range yet. They worry more about the estrogen and everything else is just information. Or at least that's how it seems to me.
Those of you that get zometa- should I be taking claritin each time? I was advised to with the first but the clinic was all kinds of disorganized today so they didn't really give me much in the way of helpful info. I felt pretty lousy after the first round, so hoping this time will be better.
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Mellee-Already on antidepressants, just had blood work done and vit D is fine. Today is the last day of my one-week break from exemestane. Thumb is still locked but overall joint pain is decreased.
Thanks for the link!
Ps-Thanks OTMom, I am having my first zometa infusion on Thursday and I am taking the Claritin!
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I was on lupron and letrozole, exemestane and toremifine. I had severe vagina changes I'm 46 and now being off everything for about 3 months have been diagnosed w DIV. It's a rare form of vaginitis. I was given metronidazole 6x in 6 month time frame. All I can tell you is get a specialist for your vagina bc now sex is completely off the table for me very painful. I wish I could give you a solid regime that I followed to prevent the atrophy dryness and symptoms that were like it and yeast infections but in the end was always vaginitis.. so only use mild soap and for now I'm not sexually active. When I was I recommend coconut oil .. but it took about 6 months for my symptoms to start and after I was diagnosed w vaginitis I've been battling it for over a year.. I am calling my treatment a chemicals castration..but I'm still here and learning to work with what I got..my last exam vagina exam was excruciating pain. Never had this before the cancer treatment.. it was gradual but now severe. I'm not on any hormone blockers or ovarian suppression bc oncologist said too many side effects I experienced but I'm still experiencing them. I urge you to be aware of the facts about what the meds are doing. You know your body and I would of listened to mine a lot closer had I known this would be the outcome. Thanx for sharing
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Sorry you're dealing with that, Jennifer. It's crazy how much cancer treatment can impact quality of life. It's rough!
Has your doctor talked to you about treatment options? I know there are suppositories that can help. An Ob/Gyn who has herself gone through breast cancer told me that even the vaginal estrogen treatments are safe (there's no increased risk of recurrence with their use, according to research so far). But there are also some non-hormonal options, including Replens.
The Use of Vaginal Estrogen in Women With a History of Estrogen-Dependent Breast Cancer: https://www.acog.org/Clinical-Guidance-and-Publica...
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does anyone seem to get more hot flashes towards the end of their 4 weeks on Lupron prior to the next shot? I feel like the Lupron shot at this point (on it for 2.5+ years now) seems to wear off or something weird is happening?
Gotta ask my MO on Monday! Putting it on the Q n Alist!
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There is no rhyme or reason to my hot flashes and I've been having them for the last 4.5 years. I go through weeks of serious hot flash and then weeks of less intense ones, on and on. I thought it might be connected to my zoladex cycle, but it doesn't seem to be the case. Not connected to weather either. Who knows, I'm going through a quiet phase and hope it will be a long phase.
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nomoresideffects, I hope things improve for you! That is one of my big fears about these meds. So far I've been okay, but I sometimes wonder how long that will last.
Someone reminded me recently that the hipocratic oath says "first do no harm." That opens up a whole can of worms, doesn't it? In cancer treatment we go through a lot of harm in hopes of being cured or prolonging our lives. Sometimes drugs do too much harm, and I believe that until better medicines are invented, some of us really cannot reasonably continue with some of these treatments.
Your advice to listen to your body is great. And we hope for the best and make adjustments as needed. That's all we can do.
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lovefromphilly- I get Zoladex now and do feel like it wears off near the end of the month, but it doesn’t seem to effect my hot flashes. Know what does? Babies! It’s so weird. My three year old was only one when I was diagnosed, but this was all new to me back then, so it was hard to tell. But now we’re taking care of a nine month old and I swear every time I went near her last night it started. Just writing this caused one! Hormones and babies...what a combo! Yeesh!
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Hi! Did anyone receive a good explanation on FSH levels? I’m confused because my Estrodiol is <5 so indicates menopause but my FSH is 3.8 which is far from it. Does this mean I’m not appropriately suppressed?
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