Arimidex - Coping with the SE's
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Thanks for all the info on the chol & AI's. I wish doctors knew as much as we know from these boards. My general practioner told me AI's shouldn't be affecting my cholesterol. . . geez. I wanted to scream at her, SO WHAT ELSE COULD HAVE RAISED IT 50 POINTS IN 8 MONTHS???
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When I went to the gyno specialist guy; he was knew NOTHING about arimidex, just tamoxifen. I had to tell HIM the background of it. I know that he isn't an oncologist, but really?!!!!!! I'm hoping that the young intern who was sitting in thought to himself, "Hmmmm, maybe I will want to stay current in women's health issues if I plan to be in this field."
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Hello Arimidex Ladies - Just wondering how many of you had their hair impacted by Arimidex. I had the last chemo on June 18th and started on Arimidex end of August, right after I finished rads. Hair is about 2.5 inches long (shorter in front), good coverage, but feels like it has really stopped growing. Leg hair definitely has slowed down. Concerned that I will have a problem with my hair.
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Hi Char: I've been on arimidex for 8 months, and so far no hair problems. Hope it is as gentle with you as it's been with me. Now that you mention it, leg hair has diminished a bit, but the head is good.
Cheers!
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Alex56 - thank you!
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Char.... I think it was more your hair growth cycle was reset from chemo. This is most noticeable with eyelashes, but I have noticed the same thing with body hair. Things will eventually randomize as we go out in time.
Right now, all the start/stop growth cycles are synchronized.
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Claire - That makes sense. Thank you.
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I have been on the Arimidex since May of 2010....noticed hair loss about August or September of 2010...I'm using Nioxin with some new growth noted but it seems as fast as I get stubbles, the hair loss is expanding. It started in the middle of the top of my head and is now spreading towards the front. Oncologist said she is not sure whether or not it will come back, although it is, slowly, with the Nioxin. I feel like discontinuing it. I have more than four years left on this crap and really don't want to be bald for that time. It was one thing to lose my hair during chemo but at least that was somewhat time limited. I'm just disgusted. Don't feel like I dare discontinue it as I don't want to kick myself in the ass 8 years down the road if I hear of more cancer. Also hate to lose my hair if it's coming back anyway. It sounds petty in the big scheme of things but I'm just really down about it.
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Hello everyone, I am new to these boards and wanted to introduce myself. My name is Bevin and I had surgery about 5 mos ago now. Am done w active treatment and have started arimidex. I am in my early 40s but went through menopause early. I have a quick question. Is anyone taking effexor for side effect of hotflashes? I have been on it now for about 2 months. Great reduction in hotflashes, but have noticed the last few weeks my heart is racing. Sometimes my Heart rate is 136 BPM. The lowest it usually goes now is around 95. My resting heart rate used to be around 65. Did anyone experience this? Does it subside? Did your docs make you come off the effexor. I can't stand the thought of coming off it, my Hotflashes were frequent, and strong and after 4 years had not subsided. They really interfered w sleep and work. Now, the effexor ended the hotflashes, but I can't sleep because my heart races so much.
I'd appreciate any advice. Thanks everyone!
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Bevin--welcome to the club no one wants to join, glad you found us. I haven't taken effexor for hot flashes, but I do take gabapentin (Neurontin) for them and it works great. If it turns out you have to come off the effexor there ARE options to manage the hot flashes!
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bevin
AND, if you do stop the effexor, PLEASE make sure you do it under a doctor's supervison, and do it gradually. It is one of the medications you can't just stop - cold turkey - but have to get off gradually.
There are many other antidepressants you can take to help eliminate hot flashes. Seems effexor is the "first one" most doctors reach for, because it can be taken with tamoxifen, ssri's can not be taken with tamoxifen. But on arimidex, yu have many options. Good luck.
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Bevin....glad you found us, but sorry you have to go down this journey....I second what NM said about gabapentin (Neurontin)...it works for joint pain as well as hot flashes and night sweats....I need to increase mine again...just need to remember to take nightime pill when I take my ambien!! been miserable hot lately.....Hugs to you.
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Bevin, welcome! You found great people here.
Char, my hair has also been affected in the 11 months I've been on Arimidex. I see very little falling out but somehow it is thinner anyway, especially in the front. I use Nioxin as well and even though I see new growth, it sadly does not seem like enough.
It looks like they are taking me off Arimidex due to another reason. I'll be interested to see what they put me on now and if the hair thinning stops.
Angela
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I have been on Arimidex for a year and a half now, and definitely see my hair thinning. It seems to affect the front top of my hair the worst, I can see it on the part in my hair. I would never quit the AI's so guess this is just the new normal. I have an appt. with a new onc. will discuss it with him. Karen
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I have been on Arimidex since December 3, 2010-just over 6 weeks. So far I haven't had any side effects. When I met with my radiation oncologist last week for a f/u he commented that since I had already been through menopause naturally before my BC dx I probably won't have any SE. I would love to believe him.
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I'Ve been on Arimidex for almsot 3 years now and have cyclical hair thinning. The thinning seems to correspond with times of stress, like right around the times of doctor's appointments and the anniversary of the beginng of this he##ish journey. Of course, I went from borderline -menopausal to pre-menopausal during the first 2 years of Arimidex. And no gyn in my area will take out may ovaries because "that is not accepted treatment." Sigh.
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Thank you everyone for your welcome notes and for your feedback. I am relieved to know there are other therapies for the hot flashes other then the effexor.
So far for me the worst SE are the hotflashes as well as hip pain. Curious as to the percent reduction in reoccurrence this stuff provides.. going to have to ask that at my dext appointment.!!
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Hello all. Wondering - any of you get a new BC diagnosis wile on AI's? I have a biopsy on the other breast tomorrow and have been on Arimidex for over a year. Odds should be in my favor, but I have to confess I'm very nervous about a possible new DX.
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bevin -
If the effexsor is controlling the hotflashes - perhaps stepping down on the dose would help. If you are going to want to come off it, you will have to step down just as you stepped up when you started. If a step down stops the heart racing, stay there. I never stepped up any higher than 75 mg and was good there and have been for 16 months since I started. And I would check - I was given the effexsor because it was one of the few that didn't interact badly with Arimidex and Aredia and then Faslodex (I have mets so it may be a bit different - I take this to stay alive, not to prevent a recurrence - done got that already).
Try to eliminate gluten for the joint pain - it is amazing how it just fades away!
Hugs all
LowRider
No hair loss on Arimidex or any of the antihormonals - did CMF as chemo 1999 with thinning but no complete hair loss either.
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Last few days getting tingling in the tips of thumb and 2-3 fingers on right hand (BC side). Was thinking sign of possible LE and never thought, as was suggested by JO-5, that it might be SE of A. Fancy that! Never thought I would be hoping it is SE of A. Of course on my 6-month follow-up with med onc next week he probably will deny it!
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Nancy7912:
I had to have another biopsy when I went in for my first 6 month follow-up mamo. I had been on Arimidex for about 2 months. Talk about being horrified. It was in the same breast, in an area that was very close to a second biopsy that I had had when I was given my original BC DX. What I think they thought they saw were changes due to rads and they thought they better cover their butts and do a biopsy just in case. I'm sorry that you have to go through all of this. I will be thinking of you and hoping for the best.
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Nancy,
You will be in my thoughts and prayers. I think it is the biggest fear of all of us. Let us know how it all turns out. All of us are cheering for you.
Catch my hug
Teri
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A hug to you Nancy! I think they just want to be super careful, but very scary stuff for sure. Like others have said, let us know. Ruth
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patoo, my 6 month checkup is Wednesday (if I don't drop dead of a stroke before then..... OMG I hate those appointments!!!!!!)
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Nancy,
I too would be terrified! Just the way it is, I think, with bc. I was having very, very bad lower back pain - and was terrified of "liver or kidney" cancer - went to my acupuncturist, when I showed her where the pain way, hip joints in back - & told her my concern, she smiled, and said "May I show you where your liver & kidneys are." One treatment on my back, and several days slathered in Tiger Balm & using a heating pad - ALL's WELL!!!!
I hope your examination shows nothing! And be gentle with yourself about the worrying, I am sure it comes as apart of this journey.
Patoo: It IS the Arimidex. That's how my trigger thumbs started - if you aren't already wearing wrist plints to sleep- that was the first stpe which helped me. It DOES go away - hand exercies help too.
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"...tingling in the tips of thumb and 2-3 fingers on right hand.."
patoo, that's a classic symptom of carpal tunnel syndrome. The nerve that's getting squeezed in the "carpal tunnel" is the one that goes to the thumb and the index and middle fingers of the hand. It's fairly easy for a good PCP to diagnose (it doesn't take a specialist). My PCP prescribed a wrist splint, which I wore every night for several months until the tingling was gone.
Turns out, sometimes you can help relieve the squeezing of the nerve(s) and prevent it from getting worse by not allowing your wrists to "flex" (bend toward your inner forearm) for long periods of time. I think that's why people get carpal tunnel syndrome from their jobs (people who work at keyboards a lot, etc.), and that's why the wrist splint can help.
My carpal tunnel syndrome was really early, and it did go away without steroid injections or surgery. Now instead of the splint I use a soft pillow to hold my hands/wrists straight while I'm sleeping. The pillow doubles as my "arm pillow" for my at-risk LE arm, and I switch sides with it when I roll over at night. This works for me because I tend to wake up when I change positions at night but otherwise I'm fairly still.
OTOH, my mom has carpal tunnel in both her wrists, and she hasn't ever been on an AI. Genetics is a major predisposing factor.
otter
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Thanks Caerus and Otter. I'm a lefty but do work on the computer all day (and, glutton for punishment, here again at night). I was having symptoms of carpal tunnel in same, right, hand early in my A journey and did sleep with a splint and have worn it at night the last 2 nights. Last time I also wore soft splints during the day so may break them out again and use them as well until it goes away again. I had trigger thumb on the left hand and had to have cortisone shots. That was several months ago and so far, so good.
So, think I will get off this computer and relax. Thanks all.
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patoo, go eat some ice cream with hot fudge. That always helps me. It's for the calcium, of course.
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Hmmmmmm, not gone yet, was still reading.
Are you on the "other" teams on the E-LAB thread and trying to get me off =track so my "team" doesn't take first place this week? Not nice, otter, not nice. But, then, this is virtual so maybe the ice-cream with hot fudge can be also. Yeah, I like that - a no calorie treat. Thanks again.
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HI Lowrider , thanks for the tip and I am sorry for your dx and resulting mets.
I am taking a low doese 37.5 mg of effexor xr ( extended release) generic brand. Do you mind sharing if you're taking 75 mg of the extended or normal release? I wonder if that extending action can cause the heart rate issues. anyway - so bothersome today, I did call Onco office. They said to go off the arimidex for 2 weeks to see if that could be causing it. I honestly think its the effexor since its a known side effect in their literature, but I'll follow thru w her action plan and see if anything changes. I checked the effexor website 2night- I dont see a lower dose. Does anyone know if the generic or brand name effexor come in lower than 37.5.? I suppose I could call my pharmacy. That will likely get me the info... Thanks again for all of your advice.
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