Arimidex - Coping with the SE's
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No stomach issues on the AI's for me, and I've been on all three - I have mainly pain issues, some hot flashes and brain fog! Are you taking anything else that could cause the stomach upset?
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Kam The term oncotype testing is one I'm unfamiliar with. In NZ I understand some woman have had this test but I don't know exactly what it is. On my path report I was said to be (lol as you say, from memory) 30%, but I distinctly remember asking them about this %age and they said it made no difference if you are slightly positive or highly positive. I still dont understand their reasoning. Both views on this can't be right so Im trying to find out which one is right and why.
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Musical, I've been reading research about effectiveness of Tam and AIs with low and negative PR. Not reading for ER+, but in at least one paper, ER has to be very low for Tam to be ineffective. Combined with other articles, maybe low single digits???
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3163848/
Even in marginally ER-positive disease (10–19 fmol/mg cytosol protein) the recurrence reduction was substantial (RR 0·67 [0·08) and ER status was the only recorded factor importantly predictive of the proportional reductions.
Can anyone help clarify the relationship of # fmol/mg to ER and PR percentages? This would be really helpful in interpreting some of these studies. I've not been able to find this.
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doxie...I was told even a low percentage of ER+ would need Anastrozole for 5 years...I am only 1.5% + It is like being a little bit pregnant so the MO says.
Dunno what bearing it has on being PR- I never had any onco testing because I was node positive, therefore needed chemo. It is usually done on node negative to see if there is any need for chemo.
As for the generic Anastrolzole...I have heartburn regularly...it doesn't last long tho and I don't take any meds for it.
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schatzi14
That's good that your MO thinks it will help. I'm HER2 1+ and wonder if sometime in the future they will consider that "like being a little bit pregnant" and require Herceptin. There is a trial going on for this.
Like I wrote, I'm coming across interesting research that tries to tease out at what threasholds these meds help and where they are perhaps not as effective. Those of us who are faced with SEs that cause us to have to balance issues around QOL and recurance risks are faced with difficult decisions and this research may help. In your shoes, I'd certainly be taking an AI right now.
The articles below discuss the importance of PR-.
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doxie...I am into my second year of Anastrozole with very few SEs...mostly hair loss! Some of these studies just make me more confused.
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Some are way beyond me. Not the concepts, but I need access to a glossary, or create my own, to understand in depth. And then what to think when they contradict each other.
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doxie - thanks for the links.
Now for the interpretation into English ....anyone????
All I can see is PR- BC's are significantly worse... with extenuating circumstances that would require one to leave everything theyre doing and take up a FULL TIME university course to be able to understand it all. "And then what to think when they contradict each other. "
Thats the 64K question. Who do you believe? I know one thing for sure. Two opposing views can both be wrong but they cant be both right. In order to come to the right answer one would have to "do time"....LOL ... that is, in University.
schatz All this does is confuse me too, but I'd still like to know.
Obviously these links are going to require FAR more than a cursory glance.
LOL NO wonder Dr Google gets a hard time.
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MENA1954, I also had slight occasional GI issues before cancer. Usually only foods like breakfast sausage and OJ. Since chemo it got worse with those foods and since starting Arimidex in Oct it's become an everyday almost every meal issue. I even ended up in the ER the week before Christmas.
LindaKR, yes, I was taking Metformin for the year and a half after chemo (I gained so much weight it put my blood sugar too high). I have been off the Metformin for a month now (don't need it any more) but have not seen any improvement.
On a separate note about side effects, I had hot flashes before Arimidex and have not seen an increase or decrease in them since starting it. I have noticed hair loss and some joint pain. One of the pains is in my hip that I had trouble with before but a new pain in my shoulder that I did not have before. I have also notice more fatigue and difficulty sleeping, to the point that I think it's really effecting my ability to work and complete daily tasks.
Is anyone else having this much trouble?
I'm really thinking about stopping this medication. I was 90% on both ER & PR, and HER2+ so I'm not sure if I should. Are all these side effects and possibility of permanent damage to other bodily functions worth a few more years? Really, I could get hit by a bus tomorrow and then where will all this treatment have gotten me.
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Steph42,
Not too likely you will get hit by a bus, so maybe you could ask your MO to switch you to another AI. When I was on arimidex, it made me tired enough to need frequent naps. I'm not a napper. Now because of an unusual eye SE, I'm on exemestane/aromasin. I'm a bit buzzed on this AI. Kind of like I just had a cup of coffee. Need to practive good sleep health with this drug.
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Steph - I have a lot of SE's from the AI, started with Arimadex, could hardly walk, get up and down, climb the stairs, and was exhausted all the time, switched to Femara, that was worse, then switched to Aromasin/exemestane and I still have all of the side effects, I've been on it for two years. I have not been able to go back to work because of the pain and fatigue (and brain fog), but being stage IIIA it makes a significant difference in my chance of recurrence so have stayed on it, and am working at managing the side effects. There is a lot of info out there on the side effects - the term they are now using for the pain issues is Aromatase Inhibitor Induced Arthralgia, several studies have been done. I'm apparantely one of the small percent that have debilitating side effects. I had been on long term disability since 9/10, I was granted SSDI in 10/12, but at the same time I lost my LTD (they made up the difference between SSDI and 67% of my lost wage). Anyway SSDI determined that I can work NO job, but Lincoln Financial LTD says I can work full time, because I can sit up???????????????? I'm working on my last appeal with them. I've tried working at our business some, and increasing and each time I end up flat out on the couch in pain and exhausted. Hopefully when I quit this drug sometime in the future the effects will go away. I take oxycodone for pain regularly throughout the day and night, or I can't move because of the joint and muscle pain. Remember I am the rare incidence. However, I've met woment that have stopped takeing their AI because they couldn't handle the pain..... Check in to it and please PM me any questions.
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I have been on anastrozole for one year and have not had any side effects. Wondering if there are anymore out there like me?
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Sharon...me either...just hair thinning
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My only SE is that I'm cold a lot. No hot flashes or unusual pain.
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Hello everyone
I'm PR+. Skin itches slightly on left leg so I am having a full blood count. Slightly constipated (sorted out with Lactulose), slight ache in bones from time to time but otherwise great.
This blog below on the Cancer Research UK website is the reason I am taking Arimidex, in my mind:
scienceblog.cancerresearchuk.o...
Androgen may cause progesterone to take over ER- cells, with the help of FOXA1, and drive this type of breast cancer.
Arimidex blocks androgen, which is why I'm giving it a go. I take it in the morning. Fatigue occurred between 4-6pm if taken at night.
My oncologist said the docs don't understand how all the pathways to developing cancer work. He's happy for me to have Arimidex, however, as I am post-menopausal.
Any thoughts/experiences about ER-, progesterone and the androgen receptor?
Best wishes
Alice
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Felt the need to come back to BC org and so glad I found this group. Have been on Arimidex for 3 months now and the joint pain is getting much worse. I feel eighty! Plan to discuss with Rad Onc and Med Onc at 3 month and 6 month checkup tomorrow. Guess I'm one of the few, too.
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Pkate...did you try Claritin? Worked wonders for many of us...after a few months, I didn't need it anymore.
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Karen
Call your BS and ask for an eval by a certified LE therapist. The jury IS out.
I had only 2 nodes out and no rads. Be safe/ not sorry. You are at lifelong risk for LE. Flying may be one of the risks.
IF you do go for compression, wear hand protection as well and keep your sleeve on for an hr or 2 after the flight.
Bon voyage'!
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Tt has been a long time since I have been here. I find when my anxiety level rises, I come here. I have been on arimidex for 9 months and overall am handling it well with few side effects. I have very little joint pain but I am hot and sweaty most of the time. I had a complete hysterectomy over ten years ago so had gone through surgical menopause. another issue I have is sore breasts particularly in my good breast. so as I approach all my 6 month checkups (in one day) tension is building. This was a complaint of mine (sore breasts) at my last 6 month mammogram and was told it could be the arimidex. It is listed as a side effect. perhaps it is the stress building as my checkup gets close.
I actually feel very well otherwise and life seems normal again. But then I remember life can never be exactly normal once given a bc diagnosis. Still life is good.
thanks so much for listening to me vent my fears and I wish only the best to all of us in this ongoing survival journey.
Maggie0 -
So Claritin helps the joint and muscle pain caused from Arimidex?
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It works for some people, but I have tried the Claritin to no avail. Don't use the Claritin D, use regular Claritin. I hope it works for you.
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Only use the claritin WITHOUT the decongestant...antihistimines ONLY...the 24 hour one!
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Thanks, Schatzi14, I had forgotten all about Claritin!
Today my med onc said to stop taking Arimidex for 7 days and then start up again. She said it works for a lot of women. I'll try anything at this point.
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Effexor is also very effective for the aches and pains, pkate, I was 44 when I started it because I felt 80! Not a good feeling. I felt great in a couple of weeks, also helped the terrible hot flashes I was having. I am still on it and just finished up 2 years on anastrazole.
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hi PKate,
I took a 2 week break from Arimidex after first 2 months and then went back on it. The break helped some, as did taking some diazapam to help control the muscle spasms in my neck from addition arthirtis from AIs on top of 3 herniated disks. That said, after hanging in there for a year and a half, I switched to Aromasin, which has greatly reduced (not eliminated) the arthritis I get. So you can just see how it goes, but keep in mind there are other AIs to try if the Arimidex is too bothersome.
Hi Doxie,
I tried to figure out how to digest the various articles that you have posted. The best (and most positive) trend that I can see is that the article that concludes that PR- is correlated with worse survival outcome was written 10 years ago and perhaps the latest meta study published in 2011 (which did not see any additional predictive value of PR status) trumps the first article. That said, it is clear that the more molecular markers we have( ER, PR, Herz), the more likely we will have drugs that help stop the various sneaky ways cancers have of outwitting our immune system.
In any event, thanks for posting the articles. Very interesting reading!!!
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Purple: Thanks for your input! It will be my first question on Friday when I see her.
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I wondered how many people have found relief from the severe joint pain of Arimidex by making dietary changes. I've been reading some about food intolerances and that it can cause inflammation and joint pain in some instances. I just wondered if anyone had done any kind of an elimination diet, pinpointed food sensitivities and noticed that the Arimidex pain had gone away? I also came accross an article from I think it was 2006 that was looking at the possibility that taking vitamin D could help with the pain. Not sure what the result of the study was or if it ever was done but the thought was that Arimidex had some effect on the vitamin D levels in your body and the women who were low in it were the ones that experienced the pain. It also did not say what the dosage should be.
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I just googled the study and found that their is a link about it on this site. It is: www.breastcancer.org/research-news/200912157
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Cowgal, I remember a couple of people saying that eliminating gluten had eliminated their pain. Difficult cure, but worth it if the pain goes away. A lot of people have said their MO wanted their Vit D levels higher. It's an easy blood test to check your level.
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cowgal - I've tried the Vitamin D, my levels are high normal now, but it hasn't helped with the pain at all. I have noticed my pain increases when I eat more junk food. Fish Oil hasn't helped me either.
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