Arimidex - Coping with the SE's
Comments
-
For me, it's my hands that have become less strong. Can't open jars or bottles any more unless I have one of those gripper thingys.
.....To change the subjet a bit. I need input and suggestions ! My recent blood tests came back somewhat questionable - my tumor marker CA 27-29 just jumped by almost 70% (but is still technically in the "normal" range); my FSH number came back crazy low (not been tested before) and my Alk. Phosphatase has also crept up alot. Now, I recognize there are many other possible explanations for all of this but I'd like to check my estrogen levels more carefully.
I know that several women here - NativeMainer comes to mind - have had their Serum Estradiol checked by a Reference Lab which does a test (a Radioimmunoassay ?) calibrated low enough to pick up the 3 to 7 picograms/ml range.
My Onc's intial reaction is that these tests aren't commercially available. Well, we know otherwise ! And since I live in NYC which certainly isn't a backwater town, I'd hope there's something here.
Can anyone make any suggestions ? Even the number of a lab which does this test in another state would be helpful since I'd call them and ask for input. (I've also posted a new topic on this but frankly, you Ladies are my go to team.)
0 -
Dear Wondering,
I can't dance after treatment either! But couldn't before.....
I have some minor knee weakness, and I find rubbing in Aspercreme really helps. My knees were no bargain before either, but a bit achier now. One of the reasons I cycle is to keep my supporting muscles strong.
Can you do free weights? Really helps me with upper body. Need to keep my metabolism stoked. I get grumpy when I can't eat.
I still have a few more pounds to get off. Had gained those going through my divorce a few years ago. Have about 7 more to go. - Claire
0 -
On Arimidex 7 years. Back pain and now have burning down legs. Is this a side effect
0 -
MTG.....did you have your bloodwork done prior to taking anastrazole that day? My liver function readings are different immediately after taking, so I need get bloodwork done w/o.
Discovered this by accident on last visit.
As for the estrogen levels, does anyone else have face breakouts??? I had such clear skin during chemo. Now I have some breakouts. Not serious, but certainly annoying.
0 -
Claire_in_Seattle wrote:
MTG.....did you have your bloodwork done prior to taking anastrazole that day? My liver function readings are different immediately after taking, so I need get bloodwork done w/o.
Claire,
I did take my Arimidex that morning and I know A can elevate my Alk Phos. levels; as I understand it, they could be raised by A, even if I postpone my morning pill. It's just that increased levels can also indicate the presence of cancer as can increase CA27-29. Although, it's probably nothing, I'd certainly feel better if I know that Arimidex is keeping my estrogen levels in check.
Believe it or not, when I expressed concern about knowing my estrogen levels, he actually looked at me and said something to the effect of why bother, "What am I going to do if the levels are higher than they should be? " Thanks to reading here, I answered straight away 1) switch to an AI with a different chemical composition and 2) modify my own behavior and cut out alcohol and soy. That's why finding a reference lab to test lower levels of estrogen is so important to me !
0 -
MTG.....
For me it was dramatic.....normal, but not quite at baseline w/o taking anastrazole. Elevated taking it. So I would want to rule out a reaction to anastrazole. I had higher than normal liver function values with Taxol as well. 20% of patients have this.
I found this out because I did the first bloodwork prior to taking, and the second after my checkup as they had to redo. This was four days apart, so that would be the most logical explanation.
I had wine the evening prior both times.
As for soy, I despise most products so am thrilled to have an excuse not to eat them. Cows love soy, and I am thrilled to drink milk and eat cheese. (I grew up on a dairy farm.) The only area where this is a problem is energy bars as use those for outdoor sports with long stretches between food stops. But have discovered fruit/nut ones so go that route now.
0 -
jude710 - ask about taking it for 7 years - like JO-5 said, they are recommending only 5 but for me at stage iv...if I were NED taking it - heck with the recommendations...LOL
Oh, and just wait until you have the butt chilling sensation - THAT is a weird one! It is like the burning only cold! Go figure that I would get that one...:-)
0 -
The estrogen test that I did was a saliva and it was very sensitive. I went to someone other than my onc because she didn't do any testing for me. Not a single test! No blood-work, etc.
The pain down the legs could be cause by the L1 or L2 spinal. It effects the nerves going down the legs. Does it also hurt in the glutes?
0 -
MTG--call the local lab and ask them who does the tests you want. Many of these tests are done at what they call Reference Labs, The local lab can give you contact info for reference lab or labs they send samples to. I was lucky, my docs ordered the tests and left it to the local lab to make the rest happen. If you live near a hospital of any size they probably have a regular schedule of shipments to a reference lab, so they may want to draw the blood sample on a particular day or before a certain time of day to catch the currier.
0 -
Samsue--my Med Onc does very little blood work, too. FSH is all she orders, just to see if I still need Lupron. My PCP is the one who orders blood work on a regular basis--CBC, chemistry (checking liver, kidneys specifically), Vit D, and anything else I want and can give a reasonable reason for.
MTG--if your estrogen levels are higher than wanted, how about increasing the dose of arimidex? Or checking to make sure you are truly menopausal? I went from boderline pre-menopausal to strongly pre-menopausal after 2 years of arimidex, which was supposed to MAKE me menopausal. I ran across a journal article that indicated that women with higher BMIs (a nice way of say overweight or obese) need a higher dose of Arimidex (or any other AI). Have you consideded asking your doc what he/she does to keep up to date with bc treatment? Perhaps there is an onc near you or in the same practice that is more up to date? I think you have good cause to questions his/her competence right now.
0 -
What was the decision about the A recall? I've tried to find info on-line but haven't come up with anything. I did find a list of all the manuf. especially the ones in India. Trying to see if the bottle I have is on the list.
Life is a beach isn't it..... or should I say beach ball, since it keeps bouncing up and down/back and forth....
NativeM - I still haven't been able to get her to do the oncotype test. Yes, my pcp ordered everything else. You would have thought she would have wanted to know where my estrogen was before starting to have a baseline.
0 -
There was a recall for generic arimidex from ONE manufacturer.
Arimmidex, Anastrozole, 1MG TABLET, Mfg. A/Z, Rx only, NDC 00310-0201-30. Recall # D-826-2009 "
"Mfg. Lot PC0089, Exp. 04/25/09;"
"REASON
Not in conformance with cGMP."I haven't been able to access the fax that went out. cGMP means common Good Manufacturing Process.
0 -
Thanks NM, Mine says MYL after the date. Still not sure who's the manuf. It seems as though they try and keep it a secret!
0 -
A/Z is Astra Zenica, but I've read that TEVA was the manufacturer. I'd really like to see the actual recall notice but I can't seem to find it on the FDA site.
0 -
That's really scary since it was supposable made in the USA... I've been afraid to use anything from India. Go figure.
0 -
The only recalls I could find on the FDA site was for Arimidex made by (of all places) Astra Zeneca! However, these were 2009 recalls and if they were serious, I don't think the pharmacies could have sold it to us especially for what we "were" paying for the brand! The reason given "Not in Conformance with cGMP" as was stated in another post, makes no sense to me. Also if you scrolled down the list, I found lots of other RXs I am taking on there also. So Monday, I will call the FDA for my own peace of mine and find out what that "reason" really means and why we were sold the drugs if they were recalled. Maybe the ones we were sold had a different NDC number.
I could not find any listed for 2010 but I will ask them about this when I call. I also listed my email address to be informed of any recalls for 2010.
0 -
On occasion, I've had that burning sensation down my leg .... in the calf area. Could that be a se?
I'm also have some new pain in my hip and back feels tender. I know I have arthritis in my back and a degenerating disk .... is it possible that Arimidex is making things worse?
0 -
Dear hrf,
I think you need to get your back looked at as could be the sciatic nerve. Would start there to rule out any further damage prior to going the A route. These are classic sciatica symptoms.
My former business partner can tell you all about this one. Evista not A, and she was fine until she got bronchitis, then her back went out from coughing...... Three months later, she can do normal things, but not heavy exercise or play tennis.
There could be an A tie-in, but think this is a discussion between your back person and your oncologist. I am suspecting further problems with your disk. - Claire
0 -
Dear Hrf:
I'm new to this discussion board but am thankful for all this knowledge, I cannot pull myself away from the computer. I have degenerative disc disease, have had spinal surgery 2002 and a full hip replacement 2007, diagnosed BC Stage 2 in 2009 (fun times), in answer to your question regarding SE the pain could be from the arimidex. I was having good success with my back and hip after my surgeries, after I started the arimidex though I have had considerable joint aches, pains and stiffness. My doctor said that it is a possible SE but no one will swear to it not even the doctors. I would suggest speaking to your Onc. and maybe a back specialist.
I wish you luck and stay in the fight I believe it is worth the battle
. I wish I could find someone in this forum that could tell me if they have some of my side effects like short term memory????0 -
BTW my pictures is for the 'Battle of the Bra's', and is titled 'Catch it in time'....
0 -
OK, I've been poking around and found a little more info about the arimidex recall from Oncology Supply:
APP Pharmaceuticals,LLC
Voluntary Drug Recall
-‐
Initiated 09/03/2010Reason:
Customer complaint regarding one grey tablet embossed with "DB03" found in sealed
and intact bottle of Anastrozole, which are white tablest embossed with "DB02". The one grey tables is suspected to be Letrozole.. . The preliminary investigation performed
by Fresenius Kabi Oncology (FKO) reveals that there is a high probability that this issue is isolated to one product lot. However, as a precautionary measure FKO and APP are recalling all lots of Anastrozole 1 mg Tablets in distribution.
Item #36189
ANASTROZOLE 1MG TAB 30
Lot #'s
870AF00101 - exp 05/2012
870AF00201 - exp 05/20120 -
I'm new to this board and am scheduled to start Arimidex in a couple of days. All of the information posted has been very helpful. My big fear in starting the Arimidex is that I'll have weight gain. I've lost 24 pounds in the past few months since my diagnosis and BMX, but I need to lose a lot more. Body fat produces estrogen, so I know it's important that I keep on losing weight. I was fortunate that my oncotype score was very low, and my chance of recurrence in ten years is 5% with Arimidex and 10% without it, according to my oncologist. I do intend to follow through with the medication, but I'm wondering if anyone has eased into it by taking half a dose for several weeks to let your body adjust to the abrupt change? Thanks for any advice!
0 -
I lost weight while on Arimidex - it does always mean a weight gain.
0 -
Don't lose unless I eat less, don't gain unless I eat more.....just like before Arimidex!
0 -
Hi Ruthbru: Found you again.
Your last post surely made me laugh....
Hugs,
0 -
Hi mckenz, and welcome to this thread I am sure you will find it very informative and supportive. The women here are phenomenal and so willing to help with anything. I am a new comer myself, and have learned so much and have appreciated every post. I am going on my 3rd week of Anastorzole and so far have not had any terrible SE's. I am just waiting for them to come, and am taking the advice of all these wonderful women and trying to walk and stay active. I also take mine in the morning which several have said seemed to help. I take glucosamine and have for several years now so I am thinking that may be helping. If you are like me you won't be able to pull yourself away from these posts, and will find some very helpful information that will answer a lot of your questions even the ones you haven't asked yet. Sorry you have to be here with us but now that I have been diagnosed with BC I can't think of a better place to belong. Welcome and may your SE's be few.0
-
OOPS forgot to mention that I have not gained any weight yet. I too have lost about 25lbs and want to keep it off. I am on weight watchers and plan to stay on it so I am hoping I can control my weight with that. Good Luck to you.
0 -
Thanks, Marie, and the others who replied to my post. I will try to go into taking Arimedex with an open mind, and I'll do my best to keep up good eating habits and move my old bod more! I appreciate the helpful suggestions on this thread and admire so many of you who post here!
0 -
Hey Ladies, I have been on Arimidex a little over 2 years now and actually tried Aromasin for a while and my SE were less especially the hot flashes but then I read an article that it might not be the best AI for me so I switched back and now I moan and groan and flash alot. I have always had the SE of breast pain and my seromas get bigger and more sore. I am now taking 50,000 units of Vitamin D and I hope that along with the Chondrotin+ will knock out some of the pain.I have pleomorphic LCIS so will be on Arimidex for 10 years.
NM- thanks for the drug recall info it looks like my mine is okay it is from ZYGenerics.
I have been able to loose weight to on Arimidex if I eat right! But I don't much of the time and I thought tonight that ice cream and choc. chip bars would help me feel better.
Linda
0
