Arimidex - Coping with the SE's
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If only Johnny Depp was...LOL
Otter...you are too funny! I don't care for the oily oils either which is why I went for the Karma Sutra stuff - whatever formula they use, it doesn't feel 'oily' and they are all estrogen-free and natural - the Replens burned for me too. And you know that Lake Woman has ALL the answers to getting the mojo working again - Lordy, that woman is amazing - didn't here if she was successful in her hunting this season yet.
melly - just a welcome and feel free to ask questions - joint pain is an se that very few seem to get lucky and not have - honestly, the removal of gluten was the best I could do and was nothing short of amazing how much less my knees and ankles bothered me!
I got a new ob-gyn once I was dx'd with the mets - their clinic is affiliated with my treatment center so they are very familiar with the issues associated with bc, the anti-hormonals and bc mets. I was the most pleasant exam I have ever had (if you can refer to them as pleasant...lol) Even the ultra sound tech was so kind - I am 56 and was chemopaused at 44 - trying to find what was left of my ovaries was like looking for a needle in a haystack - so tiny and she was amazingly gentle but persistant. I don't know how those tiny things could possibly be producing anything...
Just my story for the day!
Best to all....LowRider
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Arimidex seems to affect everyone so differently, doesn't it? I eat next to nothing, which means no gluten, but I still have awful joint pain and body aches. Water intake doesn't affect it one way or the other. NSAIDs don't make a dent in the pain but if I take 500mg acetaminophen with oxycodone, the nearly pain-free interval is extended by an hour or two.
And the vaginal atrophy...! There's a new SERM supposed to be coming out soon called Ophena (ospemifene) that's supposed to do wonders for vaginal issues. I am keeping various body parts crossed, pain or not! :-)
E
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Well ladies, I just saw my Onc and he says I have to stay on it because of my original diagnosis and how aggressive my bc was. He also said that doesn't mean every bc patient should. It all depends on their diagnosis and what they were given to combat it. I was also Herp2neu and never given Herceptin so he feels I need the Arimidex longer than someone else might. I asked him what Stage I was and Grade. He feels my support group is a bit nosey to want to know. I told him it's so I can be in the correct forum for my diagnosis! He also said my group has the Stages wrong. There are only 3 Stages not 4 so does that mean Stage 3 is terminal?? Where did Stage IV come from? I think he is wrong but didn't want to argue with him. I am Stage IIB but he feels that is useless to know since I have survived for 7 years and that is what's important. So I guess it was a good visit except for him wondering why I needed a support group. Maybe it's because I learn so much from this group which no one else tells me. I told him that and he was not too happy about my attitude. Now it's back to generic TEVA Arimidex and I'll see him in 6 months again (if he can remember who I am!)
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He is not right. There are actually five stages: 0-IV. If he does not understand the importance of a support group......then he doesn't have the slightest clue!!!!!
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ditto what ruthbru said!
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I know Ladies, I thought the same thing when my Doc recommended PT. She promised me the therapist did not make it weird. I am willing to give it a chance. It is suppose to slowly stretch the tissue and bring back elasticity. I am willing to give it a chance!!0
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Funny that one Dr. is against women chatting on boards to find help that they seem to be clueless on and others (like mine at the Seattle Cancer Alliance ) all for it and loves hearing new options for help. I do not even want to think of where I would be pain wise or emotionally if i had not found this thread.
I am not liking the sound of the weather report...chance of snow. I want spring to be here. The cold is hard on my joints thanks to our friend Mr. A.
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Medigal, you can get copies of all your medical records (including your pathology report etc). I have copies of EVERYTHING, and it has made me a real member of my healthcare team; since my medical people know that I am going to ask questions, bring up research findings etc. it keeps them on their toes, which, I think, gives me better, more personalized care.
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Have any of you had any problems with urgency to pee? I've had the problem after having an ooph about 5 yrs ago but it's gotten to be a real problem lately. Culprit seems to be no estrogen. I'm not prepared to go to WalMart and buy depends! UGH. No, I've been checked and don't have a bladder infection.
About the PT, I was told to do the exercises by the obgyn several years ago since there really are a lot of muscles in the pelvic area. It hasn't done a lot for the latest issues with the pee though.
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Hi all:
Prunie lady here...I got the official OK for the estrace cream also, used EXACTLY Otter as you describe. My Onc called me and said that "less is more and none is better" altho he sanctioned it.
The nurse at the urologist (my visit is for continual UTIs, no atrophy yet) showed me how to do it, but they want me to use a larger amount. I was told by the OB/GYN to "take the hit, it's worth it" (???) really?
I'm going with the Onc and Otter's way. I have not filled it yet, but am using the cranberry pills and Very Private moisturizer every third day. Replens burned the heck out of me too!! Hate that stuff!
I used to be able to find KY sensitive long lasting moisturizer but no more...has anyone had any success with liquibeads by KY at all? The Very Private is great, but I can't help wondering about bacteria, no matter how frenetically I wash my hands.
I think this is more (ahem) interesting than prunes, myself
.Glad we are all in this together. So many fine minds can surely find something works!
Does this Osphena work for bone health and recurrence risk without the god awful SEs of Zometa?
love to all
Prunie "Vitamin D" Prunersen
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Hey, I would like a Johnny Depp massage too! I think that is just what the doctor ordered.
Medigal - please tell your oncologist he is being judgemental when he calls us "nosey". And the last 7 years are history it is all the 7's going forward that matter now.
Replens stung for me too. I thought I was doing something wrong. For now coconut oil (how do coconuts loose their virginity?) until Enjoyful's Ophena hits the market.
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and what about virgin olive oil.....what's up with that? I can't even think of a vaguely off color answer.....anyone?
Oh yeah, put my name on the 'PT With Johnny Depp' signup sheet!
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I have used the KY beads and they work quite well for me. Seems like I have ointments and drops or a lotion/cream for everything anymore. My daughter was in our master bath the other day and was truely amazed at my collection of things in my quest to keep my entire body lubricated. She loved my lage bottle of lotion and asked what it was. I told her I had taken all the odds and ends of products that were not quite up to snuff and added saflower oil to it. She gave me the old "you are pretty clever for an old broad look". Loved it.
Sweet dreams ladies and sleep as well as you can.
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Hi ladies I have not been posting as my thumbs have given out. Trigger thumbs on both hands and it hurts to push or pull with them. Have you ever tried to check groceries with out thumb use?? almost impossible. Well any way I have been on A since June of 2010 and this is the worst side effect I've had. But it could also be repitition but onc does not think so since it involves both thumbs and happend at the same time. So he is putting me on T to see if it helps. said it would take about 2 to 4 weeks to see results, if it does not help I'll have to see a surgeon. I do not want any more surgeries. and do not reallly want to miss anymore work as I am so behind in my bills now. Just now gettin worked back up to full time. Well just needed to vent a little. I really enjoy the posts even though I don't post alot. sweet dreams.
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When I teach the section on nursing care of the patient with cancer I make a point of referencing research that shows that involvement in a support group increases the length of life, the quality of life and the tolerance to treatment side effects. It's even a test question. Are my nursing students better educated than the onc that doesn't "approve" of support groups????????
If Olive Oil comes from olives, and coconut oil comes from coconuts, where does baby oil come from? Being single and still a virgin I've been reading these latest posts with a measure of "Well, at least there's one side effect that isnt' a problem for me"!
I have this mental picture of ladies lounging back with olive oil bottles, funnels, and "private parts"
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Please tell me I've got it wrong!
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ruthbru, How about when is a virgin not a virgin? Not much, but all I could think of.
NativeMainer, I never thought of where baby oil comes from, but I like it. It will be interesting to see some responses. I haven't put a visual to the administration of the "oils", but I think you hit it on the head :>)
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to paraphrase a former president: "I did not have sex with that coconut.....or the olive either."
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You guys have me cracking up this morning reading all the posts!
:) Good way to start the day! I've read that every woman should be doing Kegel exercises - AND that they are more effective with a dialator (sp?). I have to go find one of those! It is supposed to be effective whether you are tight or stretched out. I have the 'stretched out' problem with vaginal prolapse - thanks to 10+ lb baby. (My daughter was only 7 lbs, but my son was big boy!). He never even fit into infant clothes. He's now 6'4"!! My A prescription has been filled and just dragging my feet to go pick it up. I have PT this morning for SNB arm - so I'm going to ask her about the exercises! No Johnny Depp in the group 
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You all are making me laugh this morning too! Dianef, I think you should go for the PT. I have absolutely seen in an improvement in the atrophy since I began my "vaginal workouts". Funny enough though that when I pulled out my dilator yesterday I couldnt help snikering as I now have to give it a name...Johhny 0
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That's funny! I named mine "Marshal."
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On my first appointment the Rad group recommended the only support group in our area tat they know of. It had just started up, is for all types of cancer and is located almost halfway accross the county. That is when I started searching the Internet. When I joined BCO I told them about us. They asked for particulars and immediately posted the information for their BC victims. The nurse, who is still in treatment for BC herself was particularly interested.
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I have to say that I dont know what I would do without the support of you ladies. I have wonderful friends but they dont really understand the side effects of BC. I have learned so much from post I have read on this website. I didnt even post for the first few months because I was not ready ...but I still learned and got support. I cant imagine a doctor not understanding that! So thank you to you all. I hope you have a great day!
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I think I'm going crazy(er)! I posted about Ophena/ospemifene and it disappeared. Oh well, here's another try -
Prunie - Here's a study on ospemifene. Others that I've read, but can't find now, have shown a positive effect on bones.
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I've been hearing about Ophena. Does anyone know when this might hit the market? If it's still in trials, it's gonna be years, I think. The other issue, too is that NCI ranked hospitals like mine are so uninclined to try anything off the beaten path. I am pre-menopausal (pending chemopause eval). I will absolutely positively not allow myself to go on an AI at age 40. It's Tamox or nothing, I'd have to be seriously convinced otherwise that AIs are a good choice for the younger set.
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Sadly, it isn't looking good that Ophena will be a choice for us any time soon. It awaits FDA approval, and needs a drug company to market it. I can't seem to paste links, but if you google "Ophena" and "FDA approval", you'll see the reports.
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I was thinking EXACTLY the same thing ruth... so laughed out loud when i read your post. Thank you--saved me from asking myself. 0
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oops...sorry. I was reading a few pages back when I posted. I was referring to ruth's question about PT for vaginal atrophy (Nov 16 at 8:37). I'll have to go back now and find the response! LOL It's getting juicy here....(errr...don't we wish!!)
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MHP -
QuatRx Pharmaceuticals developed the drug, then sold the licensing/marketing rights to Shionogi Pharma, Inc. earlier this year. I spoke with a Shionogi representative this morning, who said that the trials are complete and they're preparing the NDA (new drug application, I think?) submission to the FDA.
I believe FDA approval takes 1-3 years. Perhaps we can all storm the FDA and demand quick approval! I'm going to carry a giant bottle of Replens with a red line through it! Who's with me??
:-)
E
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MHP - My uneducated opinion is that AIs hit younger women the hardest in terms of side effects.
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