Hormonal Treatment for Stage IV
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Hi Curveball sorry to hear that you have been dx'd with liver mets and very glad that you have not felt any SEs from the anastrozloe. I know you wonder if its working or not as you feel there should be some SE but take it from me, that is one very powerful little pill that you are popping each day.
Good luck on your scans when they are due.
Love n hugs. Chrissy0 -
@chrissyb, I don't doubt that anastrozole is working because of the lack of SE. I just don't know yet because I haven't had a second scan to see whether the mets have shrunk since I started taking it. That's scheduled for early in May. Anyway, I have only been taking the anastrozole since January. Maybe I will get SE later, but if it works I will take it in spite of SE. Better to have SE than cancer spreading every which way.
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Curveball it's a good thing not to have SEs. I'm on Femara and I have almost no SEs either but I know it's working and has been for two years already.
Love n hugs. Chrissy0 -
Sorry not to be able to manage individual responses today, but I hope these "very powerful little pills" (ChrissyB) help all of us to do as well as possible for as long as possible. I have maintained NED status for almost 4 years now. I took tamoxifen for almost 3 years before developing an allergic reaction to it (go figure...), managed 12 days on fareston before developing an allergic reaction, then had to take a drug holiday (long story). By that time I knew how powerful those little pills were, and I was apprehensive about being on no hormonal therapy. I started aromasin in January, and I have quite a number of side effects, but I will keep trying to tough it out. I started out with a lot of side effects with tamoxifen but many of them disappeared or were significantly reduced, so I'm hopeful that will happen with the aromasin SE's. Right now I am still thinking the benefit outweighs the burdens.
By the way, lorazepam for sleep worsened a very mild tremor I have, and I had to stop it; I am now taking restoril, 30 mg, for sleep. I still have the sense that my body is very tired and ready for rest when I lie down at nighttime, but my mind is filled with intrusive, repetitive song phrases or verses. Really--I am not making this up! No worrisome or racing thoughts, just verses from a particular song going round and round (might be the same song for a couple of days, but often I get a "new" song every day/night). Songs are also running in my brain during the daytime, but I manage to keep them in the background while doing other things. The very first time I had chemo 17+ years ago, I had the same problem: songs would go round and round in my head, get more intrusive and "louder" when I lay down to sleep, but they gradually faded. With the aromasin, it started happening again almost immediately! And no, just in case you are wondering, I don't have OCD. I mentioned this to my onc and she seemed puzzled; we are both hoping this little quirk will just fade away. I guess it's another example of just how powerful these meds are (now that's a positive reframe)!
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Hi to all of you enduring hormonal therapy,
My exemestane has been stopped by my MO after I developed, on Tuesday, sudden hearing loss (approx. 90%), accompanied by severe increase in mild tinnitus that I've had for years, in my right ear, and a moderate hearing loss (approx. 30-40%) in my left ear, accompanied by moderate increase in tinnitus. This led to extreme dizziness and vertigo, with inability to walk unassisted, then horrendous head pressure and head pain, with increased confusion and difficulty communicating as well as I'd like, but not totally bungled communication. Of course, all this happened right as my MO's office was closing, so I ended up in the local Emergency Room. Had lots of labs, CT of head, EKG; no findings of stroke or heart attack, no findings of "brain tumor" (although it was emphasized I might need MRI "later"); received pain med, steroid, dizziness meds and left like a walking zombie. Sent me home with steroid, antidizziness med, and antibiotic ("in case you have an ear infection"); neither my MO nor my internist want me to take antibiotic and internist changed steroid dosing. I will see my MO on April 5th.
So...I'm wondering if anyone has had this kind of reaction to hormonal therapy in general and exemestane specifically. I noticed someone in another forum had posted about hearing loss and tamoxifen, PM'd her but have not heard back, wondering if you guys have experienced or learned anything in this area. I'm still trying to do some research but I've been quite compromised since Tuesday.
I hope you all are having a better week!
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Brendatrue,
Hi Brendatrue,
And, I empathize with all who are taking meds to prevent a recurrence. Great to have all of the support.
Just saw your post. I sent you a message. I understand how frustrating this is, believe me. I, as well, had problems with "word finding" and ended up in the ER on 2/23/13. They did almost nothing in the ED, had a CT scan, no bleed. The MRI is more specific. By the time I left the ER, (3 hours later), the dizzy feeling had passed, I was no longer nauseated and the "word finding" episode had passed. Since I have been off the generic tamoxifen citrate from Mylan labs, (6 weeks now), I still have the hearing loss, but no more dizziness and nausea. That stopped about 3 weeks ago. The volume of the tinnitus wanes and waxes, but I am always hearing "white noise". Have you or has anyone else tried Lipoflavinoid tablets for tinnitus?
The hearing loss and tinnitus are not listed side effects. Neither is dizziness or problems with "word finding". Makes me wonder if it is the drug or the Manufacturers, as there are lots of them.
Thank you for sharing all the knowledge out there!
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1-vangogh-1,
Thanks for your response. I sent you a PM. It will be interesting to see if anyone else has experienced or heard about this hearing loss issue, what was helpful, what the outcome was.
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Hi Brenda and VanGogh, I have tinnitus and did lose hearing in my left ear last year after I had my knee replaced. The hearing has gradually returned but the 'white noise' continues, sometimes worse than others. I've not put this down to the Femara I take but it could be the cause. As for the 'word finding' well that has been a huge problem.......it was worse when I first started the AI but I have been on one now for almost four years and it has gotten a bit better. There are times when I still search my mind for a particular word or totally forget the word all together but it has definitely eased over time.
Love n hugs. Chrissy0 -
Chrissy, thanks for your response. I'm glad to know that your hearing returned but sorry you have to deal with the white noise. My current tinnitus is a very loud ringing with chirping and harmonica like high pitched tweets, non stop. Both ears are improved but the right one is still quite diminished, the left one less so. Dizziness is worse when I change from lying to sitting to standing and when I lean over, but otherwise better. Still have head pressure, but only mild confusion and decreased word finding problems.
In my situation it is tough to know how much is part of a rare neuro disorder I have and how much is medication/other related. Though, none of the literature on the neuro disorder includes hearing issues, and I've read a lot of it.
Thanks again to 1-v/g-1 and Chrissy. Maybe we'll hear from others. I'll let you guys know what I hear at my next MO appointment.
Take good care all!0 -
Brenda, I had a hearing test done about six months ago and I have permanently lost the low range of the heaing in the left ear but the mid range and high are still perfect. It seems strange that it has only affected the one and not the others but when it happened, I was stone deaf in that ear. I'm just glad I got most of it back and I've gotten used to the white noise.
Yes, please let us know what your MO thinks next time you have an appointment.
Love n hugs. Chrissy0 -
I started Exemstane two weeks ago after being diagnosed with a large chest wall mass and DM to the bones. I have since felt several other lumps near the chest wall mass. If they decide to connect, I will have a soccer ball.
I do not feel any different from the Exemstane. I am having a hard time imagining two+ more months of this and then deciding to do chemo. Why not, chemo first?
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At some point while on Femara, my tinnitus was driving me crazy. I tried different things like putting oil and a saline solution inside my ears, taking vitamin B12 and magnesium supplements, stopped using earbuds/headphones to listen to music, stopped cleaning my ears. Eventually it got better but I don't really know what actually worked or if everything in combination helped.
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I have been having problems with my hearing - when in situations with lots of noise, I feel like it is really amplified in my head, and i have to leave the room.
I presumed it was related to the dexamethasone that I am slowly reducing, but now after seeing this thread I wonder if it is the femara that I started 3 weeks ago.0 -
I've been on monthly Faslodex shots for a year now. Had lung mets and some bone. Have tight joints with the Faslodex but that's all. Been under control for 3 years now.
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Mag8yearsurvivor,
Several thoughts...I didn't immediately feel that different after taking exemestane, but I surely started to feel various effects in a matter of weeks more. Sometimes we fear those horrible side effects, sometimes we look forward (if it can actually be called that!) to them, as "evidence" that the med is working inside our bodies.
Have you thought about getting a second opinion if you are starting to doubt your treatment plan? Or first, being up front with your MO about your concerns, getting feedback, then seeking a second opinion if needed? I have used second and third opinions in the past to help me answer questions about my treatment plan, to tweak when needed, and to have more confidence in the plan. I felt more empowered, and that is always useful to me.
When I had a chest mass (mets also to skin), my MO pushed for chemo first, then hormonal therapy. I honestly can't presume to guess the rationale behind doing hormonal therapy first in your particular situation, although I have known others who received hormonal therapy first in order to determine response to treatment, which helped to guide future treatment decisions, including those related to chemo. I hope you get the answers you need and let us know how are you doing. We're here for support!
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First: Florence, glad to hear that you've had good control over the past 3 years. Thanks for sharing that good news!
Second: Thanks for those additional responses regarding hearing issues. Latte, one of the things I've noticed with changes in my hearing since last week is that the left ear seems to amplify noises in the high range and already loud range (with other ranges still being muffled), while the right ear still is very diminished (albeit slightly improved). The severe tinnitus, and other problems, like dizziness and difficulty keeping my balance, also continue. Heidi, I'm glad to hear that your tinnitus got better; it adds to my hope about my hearing situation!
I read some research online regarding reports from 4,489 people taking aromasin who had side effects, and 27 of those reported sudden hearing loss. This most often happened for people in the 6-12 month range, but also happened in the 1-6 month range. There were lists of comorbid conditions as well as additional meds being taken.
I wonder how many people experience problems and don't report them? I'll let you all know what I hear from my MO after Friday's appointment.
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Mag8yearsurvivor, I asked my MO about the same thing initially. The hormonal therapy is less toxic, so if you have not had it initially, it is a good first choice because if it works, then you still have chemo available later. On the other hand, if there is a large tumor burden, it is very rapidly progressing, is causing symptoms in other organ systems, the chemo will work on rapidly dividing cells, whereas the hormonal therapy does not. So if you are in that situation, they would use chemo first, THEN hormonal. Hope this helps, hope I didn't make it more confusing.
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Brendatrue, just as we were speaking, so to speak, my tinnitus amped up. This time I knew it was from the antihistamines I'm taking for hayfever. I stopped taking them and it's getting better. I have to find another solution for my hayfever though. I'll try some Benadryl tonight.
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Hi, Heidi,
I have had mild tinnitus over the years (I blame it on nerve damage from a Police concert in the 80's....), and I have learned what worsens or helps it. Years ago I took gingko biloba and experienced a decrease in tinnitus over many months, but that might have occurred on its own, without benefit of the gingko. It seems I am better at knowing what makes many things worse than I am at knowing what makes things better, unless by making it better I mean taking away what makes it worse! Or perhaps that's just a reflection of how I am feeling these days....
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Thanks for the input. I have been walking an hour a day for the last two months, feel that it has helped my mental and physical well being. We have a beautiful community park.
I wrote last about Femara, just discovered a new pea size lump on my left breast (original site already had mets to lung and lymph so no surgery) and will have ultrasound in four days to identify. What a roller coaster. Each day is a gift.
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Oh Prosper I sure hope that new lump is nothing to worry about. It's is indeed a roller coaster ride and there are many ups and down.........all we can hope for is that the ups far outreach the downs.
Love n hugs. Chrissy0 -
Prosper2, I am sorry to hear that you have a new concern and a test to endure; I do hope that you will get the best possible news. Yes, you are right, we often feel as if we are on a rollercoaster, don't we? Cheers for walking an hour a day!
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Brief update on my hearing "issues" and hormonal therapy status. My MO says I must stop hormonal therapy and "just rely on surveillance for a while," which means at least six months, since I am still having hearing loss, severe tinnitus, recurrent vertigo, and almost constant mild to moderate dizziness, which she is attributing to exemestane wreaking havoc neurologically. She believes that the rare disorder I have, which creates neurological "episodes" and places me at risk for stroke, has not created the right environment for the hormonal therapy to do its job safely. She sent me for an MRI immediately after my appointment on Friday, and I do not yet have the results. She also is working toward an audiology work-up to determine the status of my current hearing impairment. I remain hopeful that my hearing will improve, of course, but at least testing will help to determine how I am NOW and whether there is improvement in the weeks and months to come. I am unsettled by the prospect of "relying on surveillance" and also find myself hopeful that I am dealing with "just" a bad reaction to the exemestane and not anything more challenging in my brain. Thanks to all for your support thus far!
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Being new to this group, I do not know if anyone else has tried the Flax Seed Oil & Cottage Cheese protocol. Another Stage IV person told me about this and when I googled, I did not finish typing the word "cheese" before a ton of articles popped up on what a German scientist promulgated 60 years ago. back when chemo killed patients as much as it cured. My husband (who suffered a brain stem stroke after surgery for a benign brain tumor) and I have started taking this concotion twice a day. The research that I have read is incredible. If it works, great. If not, no downside.
I see my MO in two weeks, but my tumor feels like a golf ball now and it was a soft ball. He can take all the credit if it turns out to be true.
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Does anyone know if tiredness, nausea, and lack of appetite are SEs of letrozole (femara)? I have been suffering from all three this week. This week is the first week that I have been completely off steroids, so I assume that all these SEs were also happening before and were just masked by the steroids. The other option is that they are caused by the fentanyl patches, but what is strange is that the SEs are only there until after lunchtime, and then I start to feel better. I take the letrozole before bed at night. Any ideas?
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Latte, the tiredness and nausea very definitely are (my nausea was worst the first few weeks and gradually got better but I still get it occasionally). The lack of appetite may also be but could also be a byproduct of the nausea. Hang in there...it should get better but let your MO know if the nausea gets worse. A mild anti-nausea med might help, too. Hugs...
edit to add... Try bumping up the time you take the pill to mid-afternoon...that might allow the worst of the effects to happen overnight.
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Latte, yes, those SEs can occur with letrozole, but also with fentanyl, and lots of other meds. How many other meds are you on? The more meds, the more likely you are to have drug-drug interactions as well as compounded SEs, so if several cause nausea individually, together they may cause it more. I had problems with severe fatigue and dry mouth recently, found that each and every one of my meds could cause those SEs. So, being the poorly compliant patient that I am, I ditched them all for a bit, did a sort of "wash-out" for a couple of weeks, felt tons better, then have been slowly adding them back. This was BEFORE letrozole - I would not stop that without talking to my MO! Talk to your MO about your SEs.
Here is a link from Mayo Clinic on SEs for letrozole:
http://www.mayoclinic.com/health/drug-information/DR601669/DSECTION=side-effects
I have only been on this for 10 weeks, and am having no issues other than I am noticing lots of hair in my hairbrush and caught in the drain when I wash my hair, knock on wood. From what I have read here and on the Femara thread, some SEs take a while to show up, others hit early, and some resolve with time as your body adjusts to it.0 -
Thanks ysa and Linda
I just got home from my onc checkup and she decided to take me off letrozole next week because my markers went up 20 on the last three weeks (I thought originally we were going to wait 8 weeks to see if it is working). And I'm going on a clinical trial next week instead for velaparib with carbo and taxol. Which terrifies me...0 -
Mag8yearsurvivor,
What you describe is, I think, part of the Budwig protocol. I don't know much about it but if you look on the alternative forum you should find something. Flaxseed oil and flaxseeds are one of those foods that may not be good for those with ER+ bc, although opinions vary. Wishing the best for you and your husband.
Has anyone had se's worsen from hormonals after a long period of time? I have been on Anastrozole for 18 months and had negligible se's until recently. In the last month both knee and ankle pain/stiffness have markedly increased. Just had a PET on Monday and am still NED so pain is not progression. Arthritis, general aging?
Caryn0 -
Caryn, it's very possible that you have osteo arthritis which is causing your pain. I had it prior to staring the AIs but it has progresses markedly since being on them. To help combat this I take Boswellia twice a day as it is a natural anti inflammatory and seems to work well for me.
Love n hugs. Chrissy0
