Arimidex - Coping with the SE's
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"The harsh reality is that up to a third of women starting hormonal treatment don't stay on because of severe side effects." - I also believe many may have continued the hormonal treatments had they been with an MO who listened to them and tried other options.
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Patoo--you have a good point.
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The statistic is actually 50 percent of women do NOT continue anti hormone treatments due to SE. My oncologist at a major NYC facility confirmed that. This is not ok. Women really need to speak up and docs really need to listen to them. IMO there needs to be much more research to come up with some resolutions to combat SE and/or find alternatives!
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I was more fortunate than I realized. The first day I took my little white pill, I felt like I was so old. I had taken it in the morning. I switched to evening and that worked for me. I got back to my walking 3 miles several days a week and started playing golf again as soon as I was fully healed from my bmx/recon surgery. In 2009 I was 67 so I was never certain any aches and pains were SEs or just aging. The HRT had kept me feeling younger than my age and stopping HRT brought on aging SEs.
I am now experimenting with getting off the Effexor 75 mg that helped me with the SEs like hot flushes. I am taking an Effexor every other day. If that works out, I'll take one every third day. My PCP is not urging me to stop taking the drug but I am interested in learning if I really need it. Lots of older people are happier taking a mild anti-depressant.
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Starynights, I am someone who "pushed through" the SEs, which ran the gamut. I still have some but they seem to take turns bothering me—some more than others (knees, feet, back, hips, shoulders, wrists). I was on the branded Arimidex for quite a while, but was switched to the generic when that became available. Seven years and counting (MO says it or another AI will probably be for life for me). Since some of the SEs come from inactive ingredients (isn't THAT a misnomer!) in the generic pills, they might be avoided by switching to a different manufacturer. I find ibuprofen works pretty well. I take it prophylactically on days I plan to be more active.
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I am starting my 9th year on Arimidex. For the first 2-3 years, I did have joint and bone pain then it gradually went away. Also, I did find that I did better on the Arimidex than on the generic. My biggest SE now is indigestion.
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Aug242007...is indigestion a SE of Arimidex? I'm having reflux/heartburn issues and was wondering if it could be due to anastrazole.
PB
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Dtad--Wow, I didn't realize so many women didn't finish hormone therapy.That's actually pretty frightening.And amazing that it's considered ok for mainline cancer treatment!
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Just can't help thinking if bc was a mans disease we would be much further along. I think its really sad that the number one standard of care is not tolerated by 50 percent. Add that to the other percentage of women who live with the side effects and its a pretty big number. I understand that some women do well on them and thats great but what about the majority that don't ? The fact that so many women get breast cancer is bad enough but living with the so called standards of care is another! We are one courageous bunch....
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I always wonder if the women who do well are getting the full benefit. Maybe we are sneaking some estrogen past the drug. A very unscientific line of query.
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Pboi, if you go to the Arimidex website it has a long list of SEs one of which is indigestion. Also, sort of interesting to see the laundry list of SEs. Most doctors don't even know what they are.
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To all, maybe it would be a good idea to post our SEs since doctors don't usually read the list of SEs. I am on my 9th year on Arimidex, I took the BCI test which showed benefit from continuing 10 years. I had the most SEs during the first 2-3 years, bone and joint pain, headaches, dizziness, had two frozen shoulders and of course, vaginal dryness. Just kept taking it and pushed through. I hope that all of you can at least do 5 years. Good luck!
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Thx Aug242007. I had seen that. Was just wondering how common it was to have reflux due to the anastrazole. Or maybe my reflux has nothing to do with the AI. I don't know if I need to change brands of my AI or change AI or what. Will need to discuss with MO
PB
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pboi,
I had just finished a round of Prilosec (OTC, not prescription strength) when I was diagnosed. I thought I was done until chemo brought my acid reflux and heartburn back. I stayed on Prilosec until I developed developed an allergy to it about a year ago. I tried going without anything, just making do with antacids, but that didn't work very well, so I am now on Nexium (OTC also).
I am certainly glad there is a product that helps me lead an normal dietary life, and another product that is helping to keep my breast cancer contained. I don't really mind taking them both.
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Nancy... Periodically I had stress related reflux pre bc. Then chemo aggravated it too. Just wondering what could be the cause now stress or Arimidex. Have you continued to have the reflux the whole time you've been on the Arimidex?I can live with it but wondering if it's ok to take the these reflux meds long term.
PB
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Also, many of us had heartburn or reflux after radiation. It just happens. I use Zegerid OTC which works well. I only use it for 7 days then it calms the indigestion for a period of time. Although I did not have chemo, I would think that the chemo kills off cells along the digestive system which causes indigestion. Just a thought.
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An interesting SE that I had on Arimidex at about year 2-3 was "word search". This happens to many of us who have taken AIs. It is caused by the lack of estrogen. Word search is when you just cannot think of the word. So maddening. It then just goes away.
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pboi,
Except for the periods when I tried to stop using Prilosec or Nexium, I have been on reflux meds for close to nine years. Only the OTC strength, though, not prescription strength. When I go to my MO for now yearly checkups and blood work, it's always on my list of meds. So they check my liver function, as that is one of the SEs from these meds. So far, so good.
I know there is probably a physical reliance now on these drugs that would be hard to shake-off. An addiction, I guess. But I'd rather have to take an anti-reflux med than live with acid reflux and the damage that can cause.
As for what caused it, initially, I'd say it was stress. I worked, was a single mom (little to no help from my ex), and lived with my aging father. I don't think going on an AI helped any of that, but certainly a lot of that stress has dissipated in recent years. I'm now retired, my kids are mostly on their own, and my father passed away six years ago. Of course other stresses have stepped in, but nothing like before, so I have to say I think it's probably now the AI that is causing it.
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Aug242007,
Yes, chemo probably does a number on our digestive tracts—the first week I was on it I had the worst constipation I have EVER had. But the good flora in our guts does come back with time and good diet. A few weeks on a probiotic took care of that. Acid reflux starts a lot higher in the digestion system and can be initiated by so many things that it can be hard to say what causes it. I'm sure all the treatments have played a part in mine.
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reflux for last few months, on Anastrazole 2 yrs 4 months now. Take a few Tums before I go to sleep. But thats new. What irritates me no end is the weight gain tho, and difficulty losing. Have steadily gained 25 lbs since started on the meds. Had just lost 40 lb and theyre gaining back. Not many other SE but almost not worth continuing it.
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Aug24, I had the 'word search' problem in year 1 on arimidex. Gone now except for the occasional inability to think of some word but that could just be normal.
aviva, you don't have many SE's so glad you say "almost" not worth continuing as it's easier to combat (well maybe not easy mentally) weight gain through nutrition and various exercise programs, than it is to combat a possible recurrence.
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Glad that I brought up the "word search". it is pretty scary because you think you have dementia. It is a lack of estrogen caused for me, by the AI and ovary removal. It does go away.
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DTad... I mentioned the 50% stats to my onco's NP, and she said that didn't include those changing to other AIs. She believes the stats were more like 10% quitting due to SEs. She and the OC are with Philly's Jefferson system.
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I've been dealing with the word search issue. I"ve been on AI for 14 months now. I also seem to have some short term memory lapses. Where did I put that important mail? My appointments that I forget to put in my phone...etc. Hope this passes, I've gone back to general Real estate
Also, the vajayjay dryness. Omg. What can we ER+ girls use for that?
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Hi HomeMom, after 9 years of the AIs, I have found there is just not much you can do for vaginal dryness. I do believe as with all SEs you just get used to it and use lots of Vagisil and other non-hormonal lubricants. The word search and memory lapses get better over time.
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Have found Slippery Stuff is hands down the Bert thing for dryness. Can only buy online. Recommended by pelvic floor specialist
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for the vaginal dryness, I swear by my regimen. first, I use Crisco shortening 2-3 times a day as an external moisturizer. (just like using lotion for your hands.) second, I use Vagifem. I questioned it since my cancer was hormone positive! the vagifem is NOT systemic and does not contribute to the cancer. I sought the advise of my MO, my RO and my gynecologist. all agreed. after my hysterectomy 6 years ago, I experienced a ton of yeast infections from dryness. I sought out a specialty vulvar office at St Louis University med center here in town. It was amazing and I followed her instructions to the T. the results were crazy good and proved to be even more helpful after my BC diagnosis last year.
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Anybody notice difficulty swallowing as a SE? I mean an actual lump in your throat feeling
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grammy, I have not had that SE but suggest you get it checked out.
Re the word search issue, it doesn't have to be an SE, we (or some of us) are older and memory lapses come with age.
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I did get it checked out. Supposedly hyoid bone rubbing against thyroid cartilage Twice when I forgot to pick up my rx refill and went a few days without Arimidex it completely disappeared. Plan to discuss with my onc but was curious if others had noticed it
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