Arimidex - Coping with the SE's
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beau ..you and I are the rare birds that have ER+ but PR- and HER-...wish I knew what that means in terms of recurrence. Did your MO give you any info on that?
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schatz Hi, I wish I knew too. Somewhere on the boards I recently saw that someone reckoned being PR- gives a bit of a higher risk. I'd like to see proper documentation. I dont know that its rare, but certainly more uncommon than ER &PR+ HER2-
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3430090/
ER+ PR- Her2neu- come under the Luminal B subtype. I can't remember if it also requires one to have a high Ki67 (I've seen > 13% and > 20%). Ki67 is sometimes reported in the initial biopsy (mine was), but at a teaching hospital, they redid my biopsy and do not report on it. Oncotype does use Ki67 in their 'Proliferation Factor.'
This article talks about the implications. In other articles I've seen Pr viewed a different way, as a mitigating factor...Pr+ being protective. The above article seems to view the lack of Pr as evidence these cancers are using different pathways and endocrine therapy being less effective.
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wow! that article scared the hell out of me! being only 5% PR+ is almost like being 0%!
wouldn't having no nodes involved or a having a DMX account for anything?
Mena
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One of mine was PR- and the other was PR+. So whatever it means, I'm in the middle.
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Hi Mena, Cam and Wren,
Thanks for posting interesting info. The way that I understand it is that the definition of Luminal B is still evolving, although ER+, PR- and high Ki67 are markers. However, for now at least, I prefer to focus on the Oncotype DX score, which takes proliferation and PR levels into account. My score was 26 so I had chemo (TC X 4) and am taking an AI too. My score was higher because I was PR- too. My score of 26 translated into a 17% chance of recurrence (with Tamoxifen), but with chemo, my current risk of a recurrence is roughly 11%. (I can sleep at night since I figure that I have a 90% chance of it NOT coming back!) Here is an article that is somewhat encouraging, especially if you are node negative:
http://www.biomedcentral.com/1471-2407/10/228
The gist of it is that there is no difference in survival rates, etc between ER+/PR+ and ER+/PR- if you are node negative. That story does not hold if you are positive nodes and/or stage iv. Another question on my mind is whether AIs are better for PR- cancers than Tamoxifen. My onc said that the BIG-98 study showed the same survival rates for PR- breast cancer if you had letrozole for 2 years and then switched to Tamoxifen as staying on letrozole for 5 years (I am going to try to find the link/study and will post it here if I do).
I would love to hear what other people think about this type of cancer too! I appreciate these posts and having someone to share information with.
Best, beau
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Seems like I don't fit into any category since I had one node involved. To me they are all statistics...all dependent on many variables. I guess after 5 years I will see what happens. I took all that was offered to me so not much else I can do as far as the medical world is concerned. Wouldn't hurt for me to lose a few lbs. tho.
I was never given an Oncotype test..because of node involvement, chemo was a given! No clue what Ki67 is.
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beau - thanks for posting that study. While I was the one that posted the "depressing" PR- story, I too needed encouragement! I'm not PR-, but almost. I barely made the positive range on Onoctype and it was 5% on the IHC test. And this might help others process this ER+PR- story, your oncoscore is 13 points lower than mine and I am technically PR+, so there are other things involved with recurrence besides PR+ or PR- (from your article, being ER+ is really the critical one)...e.g. I have a very high Ki67 (measure of proliferation). I will also note that the St. Gallan study uses 5 years for a benchmark for recurrence, while Oncotype uses 10 years. Thanks for the article.
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My Onc. score was 28. With the AI's, T/C x 4 and rads, it brought the recurrence rate from 18 to 12%. Both my mo and bs recommended chemo.
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Hi everyone and especially Schatzi,
schazti, I a,so glad that you are five years out and cancer free! We are all unique and these big studies only capture trend lines, not the story within the story; that is why we are all here on this website - doing the best we can to manage this disease and to support each other on this journey.
kam, I did not know that that the Oncotype DX uses 10 years as a benchmark. That is positive news and I appreciate your knowledge.
Kiberty, glad that you are through chemo and radiation! I don't know how you feel about this journey, but AIs beat chemo by a mile ( I has anemia and neuropathy after only 4 TC) , but I still consider AIs " active treatment" as I am not the same person that I was before - this is not a complaint, just an observation. Happy to have this little white pill!
Best , Beau0 -
beau...sadly I am only a year PFC (in March). I believe it's Ruthbru that is over 5 years done. It is sure something to aim for though.
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Schatzi, I'm in the same boat as you -- one node involved, micromets, so our situations aren't as clear-cut when it comes to some studies. I was about 2 months behind you, so in February I'll be one year PFC(chemo) and in April one year since radiation .
Beau, I'm on Arimidex and have not felt the same since I started, but I think it 's my most important defense now, so I'm not complaining either. It's just something we have to live with. But at least we ARE living!!!!!0 -
Wave...the difference being..you are stage l..I am stage ll and also PR- apparently that makes quite a difference. As I mentioned before...they are only statistics...have no clue what the final results will be. I have so many questions but at the moment I am just holding tight!
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So where am I in the recurrence thing - I can't seem to find any good studies - stage 3A - 5/18 nodes, 100%-ish ER+/PR+/HER2+?
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Hello ladies
To those of you who are just starting Arimidex, thought you might like to hear of my experience of taking it re time of day.
In brief, I took it at night (11pm) for two weeks. Nothing much happened for a week but then I started getting terrible fatigue between 4-6pm every evening. It seemed to happen about 16 hours after taking Arimidex.
So I took two days off it and then started taking it again at 8am and then 10.15am (got up late). Voila. No fatigue!
Everyone is different, of course, but just a simple thing - taking it at a different time of day - worked for me.
Good luck to us all!
Alice
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I take it about 8-9pm. Before, I couldn't keep my eyes open in the morning.
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The first cells are empty. They contain my medication, the only one cancer related is the Arimidex or whatever the generic I'm taking is called.
The vitamin B complex the Naturopath had me start was very specifically to have MTHF or methylated folate. Good quality Fish Oil is a must (4000 mg daily) Ostera is for bone density and I think when I started taking that my achy joints just stopped aching. Supplements are costing a small fortune, but along with a really good diet and lots of exercise I think I can live with Arimidex for 4 more years.
Ac ompunding Pharmacy is a good source for high quality supplements, Meta Genics, Klaire Labs good too. Some stuff i just get at the Vitamin Shoppe.
Medication/Supplement total dose per day AM Mid-day PM Magnesium Glycinate 400 mg x Liquid Vit D3 5000 mg x x Evening Primrose Oil 1500 mg x x x Chromium Picolate 200mcg x Rhodiola Root 2 tablet x x Liquid Calcium 1000 mg x x x CoQ10 200 mg x Fish Oil 3600 mg x x x B Complex with Folate 1 tablet x One Daily/Lutein/Lycopene 1 tablet x Glucosamine Chondroitin 2 tablet x x Zinc Citrate 30 mg x x Melatonin, sublingual 9 mg Ostera 2 tablet x x Most of the PM supplements are takens with dinner, the meds before bed 0 -
Well that didn't work. It looked fine until I inserted it. I'd finally put my meds and supplements is a spreadsheet to make them easier to keep track of but it didn't translate well.
Magnesium Glycinate 400 mg (sleep and bones)
Liquid Vitamin D3 (5-6000 mg per day) In the northern hemisphere like 90% of people are deficient)
Evening Primrose Oil (1500 MG, BC)
Chromium Picolate ( 200 mcg)
Rhodiola Root (2 tablets, BC)
Liquid Calcium (1000 MG plus I drink almond milk)
CoQ10 (200 mg)
Fish Oil or EPA/DHA (3600 mg)
B Complex with MTHF or methylated folate (1 tablet)One Daily with Lutein and Lycopene (this is just a Vitamin Shoppe brand)
Glucosamine Chondroitin (2 tablets daily for my aging joints)
Zinc Citrate (30 MG Another mineral that we are usually low in)
Melatonin (9 mg sublingual for sleep)
Ostera (2 tablets for bone density)
Many of these supplements I was taking before I saw the Naturopath, ut she's approved them for general health and breast cancer.
I have my meals with a side of vitamins!
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I was diagnosed with breast cancer last summer and had a lumpectomy and radiation but not chemotherapy. I started Arimidex (generic) at the beginning of December and began experiencing numbness in my small toes. The numbness is constant but has not interfered with any activities. At this point it is an annoyance but I did go to see my oncologist immediately. He hasn't seen this side effect before and sent me to an internist to rule out other causes. I am concerned and find the timing too coincidental not to be related to Arimidex. I'm not sure how concerned I should be and whether I should wait to see if the numbness subsides.
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Thanks for starting this thread Low Rider. I started my Arimidex Oct 1st. My side effects came slowly too. I have joint pain and can't sleep. Had hot flashes during chemo. Now I have hot flashes because I am officially in menopause. This thread will come in handy for me. Does anyone out there use herbal remedies for their side effects? If so can you share your information?
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Yes, it is I done with Arimidex and going on six years.
Each individual person's chance of recurrence is 100%, or it is zero. Arimidex is one of the things we estrogen positive can do to increase our chances of it being the second of those two numbers!
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Hi Ruth~ So am I reading this right, after 5 years you were able to stop taking the"A"? My oncologist wants me on for 10. Thoughts on this.
enjoy your day!
Balsie
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Yes, mine said 'stop after 5 years'. He said that there is no proof (yet, anyway) that taking them longer will reduce recurrence (the new 'take it for 10 years' studies look at Tamoxifin, which works an entirely different way, so whether or not that will translate to Als remains to be seen). Add into that the facts that I was only mildly estrogen positive and node negative, it made sense to stop (now I am knocking on wood). If I had nodes involved, or was highly estrogen positive, then I think we would have had more of a conversation about what to do next.
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I have one node+ and my MO still isn't too sure about anything after 5 years. Like you, I am only slightly ER+.
We have another 4 years yet to decide.
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I've got 3 more years - very ER+++++, and 5 nodes - I figure in the next 3 years all the rules will change again, so I guess I'll just wait and see!
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Is anyone else having GI problems since starting Arimidex?
I started taking the generic version, Anastrozole, in Oct and have had a lot of problems.
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Steph42, although I have suffered all my life with GI problems, I have noticed that since I have started the anastazole, 4 months tomorrow, I have been having more stomach issues. My heartburn is much worst than it was.
Mena
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Where is the documentation that the AI's are more beneficial the higher your ER & PR % is? I keep hearing two viewpoints. I was told it didnt matter how positive you are it works the same.
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Muscial - if my memory serves me correctly (but you know how that goes), it says it right on the Oncotype report.
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