How Many are doing 10 years on Aromatase Inhibitors
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Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. All are major players in the drugs I was given. Had I been tested, it would have been known. The drug choice and /or dosage modifications could have been made
Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.
I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.
Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.
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OH lol I love your being special !
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yes , my rumors have been jumping up and down for the last two years!! I never had have them tested before until I moved to CA !! I have had a bone and pet scan, and everything is fine! My onc said she will keep testing them every 3 months!! I will be on aromasin 9 years this summer!!!
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Lab ERROR !! Everything is ok !!!!!!! Thanks for your good thoughts --took then back with me for the test LOL
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Yay 2Jacq. Now tell the lab to stop that error shit. You do not need this stress.
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Thank God, 2Jacq!
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Praise The Lord, 2Jacq!! That is wonderful!! But sorry, that you had to go through the stress!! Darn those tumor marker tests!!!
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Having a bone scan Thursday. Have hurt so consistently through 3 AIs and now Tamoxifen that MO wants to rule you-know-what out. He doesn't think my symptoms are that, but wants to make sure. So. Let's hope there are no imaging errors or I will go ballistic.
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Speaking of scans and tests, my blood tests showed an increase in rheumatology values. (or words to that effect) apparently 80 percent of adults have that and there are many causes. The doc left a phone message so couldn't ask any questions (until Monday) but does anyone know if this is related to breast cancer?
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http://www.medpagetoday.com/MeetingCoverage/EBCC/44881
Some Breast Cancers Require Longer Tx
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I saw that study earlier today and was thrilled to see that these ongoing studies are starting to bear fruit... Glad you posted the study cp! I've been busy these last few weeks and knew you would post this way important study !!! Thanks!!!
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Thanks for posting that. I was wondering the same thing since I'll be hitting the 5 year mark soon, too.
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Thanks for posting cp418
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Yes, thanks so much for posting this info!! I will be on aromasin for 9 years in June!! I am going to keep going!!!!!
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Thanks for the info. I think I have made the right decision to carry on regardless of the se's.
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Bone scan was clear. I am trying to just act like my aches and pains are normal. Sure, I hobble down the stairs the first few times I go down, and hold on to the railing and the wall. But by the third time I am more with it. I"m happy not to have cancer in my bones, and everything else is fine enough! I don't know about 10 yrs... I will only be at 2 yrs in August.
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Lisa - I find taking omegas (fish oil, etc.) at night with my Letrozole has made a big difference. I have aches in my hands and toes when I don't take the omegas. Just a suggestion.
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Started Arimidex in Feb 2009 so I've passed the 5-year mark. Saw MO for 6-month follow-up today and really thought, from his past comments, that I would be done - Nope! Another 2 years. Guess he read the studies that came out this past year(?) about 7-10 years. He says since I had low Oncotype score (11), no chemo and few SE's probably good idea to continue.
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Am I missing something-I thought the studies re longer treatment time possibly for some hormone positive cancers was using Tamoxifen. Those results are being extrapolated from to hypothesize that the same may hold true for AIs with regard to certain hormone cancers, right? But no new study has yet to be completed -- isn't the Gupta article the same as the news we know? Or again, am I missing something?
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Jessica..You are thinking of last years landmark ATLAS and Attom trials.This year's ATAC trial revealed that for some women who are ER positive, genetic testing might identify those with a high"E- MODULE" score, that might be more likely to recur in years 5-10 and prolonged endocrine therapy might be warranted.
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jessica...don't lament! There are studies being released all year long at numerous conferences!....And before you know it...the San Antonio conference will be here!
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Six month check up today. Ten years. Anything new? Ten years. Metformin. Nothing yet. SOFT and TEXT? Soon, but don't expect anything yet. Gnant? Still going to take awhile...
How are you feeling...like he really wants to know....Okay, when it's 70 degrees outside it feels like 100....Gonna get better?....Hopefully, he says...Soon? I beg???? Really can't say when....
So then I tell him, FROGG TOGGs. What's that? He wants to know.....Only thing that keeps me cool...Then he gives me his personal email and asks me to send him a link for FROGG TOGGS...tells me he knows a few patients that could use it....
And for THAT he charges ME a $75 co-pay!
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questions for VR!
1. Is the E-Module score different from the ER responsive info we get when we get our pathology reports? because, if so I scored 100%!!!
2. Aren't Frogg Toggs paperish rainwear?
Since I have been taken off of tamoxifen due to endometrial cancer and won't be finishing my 5 years, I am concerned about recurrence and what I can do to prevent. My MO probably won't prescribe an AI for me because I had DCIS. I will ask about metformin.
with regards to Frogg Toggs, I was having hot flashes going onto tamoxifen and hoped that when I stopped, so would the hot flashes. isn't 10 years long enough? but no such luck. so, Frogg Toggs help?
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Jelson one of the natural estrogen blockers seems to be dim. I don't know much about it but I know a friend of mine is using it because she can't handle Tamoxifen.
Also white button mushrooms are supposed to have aromatase inhibitor properties but you might have to eat an entire grocery display to get benefit.
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Jelson.. Thanks for reminding me about E-Module...in fact that was my first question. Extremely premature was his answer....and from my experience with the DH's rare genetic disorder, I would say, don't read much into the meaningfulness of E-Module until it actually means something... I hate sounding like Debbie Downer, but my oncologist, whom I admire, calls things straight up and rarely minces words and, looking back on all the info that he gave me when I was diagnosed so I could make an informed active treatment plan, was spot on. He doesn't get too excited about studies, until there is something to get excited about.
FROGG TOGGS chilly sport scarves and pads keep me cool. You just dunk them in water and wear them. They are super absorbent, without dripping. Walmart can't stock enough of them. I have given them to a dozen people. I rave about them to anyone who listens. And, before I give it to a needy friend, I tell them they MUST pay it forward....that is...give one to another needy,sweaty friend!
FROGG TOGGS. Amen!
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Happy Spring, everyone!! I just had my check up with onc, and we discussed my Bone Density results!! I have been on aromasin for 8'1/2 years and I now have mild osteopenia ! my onc thinks that is OK, and I will continue taking aromasin until I hit the 10 year mark!! I guess I will obey, he,he,he!! I just try to ignore the side effects now. Yikes, I guess denial is bliss!!! I hope everyone is doing oK!!!
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Hi everyone, thanks for continuing to post on this thread. When I first started it back 12 months ago, it seemed a lot of ladies were still mostly being told 5 years, now it seems to becoming more common that we are being told 10 years. I think they are basing it on the Tamox studies for 10 years, and my Onc said they are just presuming that hopefully when the studies come out it will show that, but in the mean time think it best to continue, just in case. Especially for those with higher risk of recurrence.
Ched
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frogg toggs, same manufacturer, different line! thanks VR!! I can see using some of these cooling things in the gym and on the water!
http://www.froggtoggs.com/cooling.html
I assumed you were talking items like these: http://www.froggtoggs.com/womens/waders.html
I have been eating a lot of cruciferous vegetables. I don't see hauling loads of mushrooms into my house since my husband is allegedly allergic to them. maybe I will try adding DIM.
re E Module - I will mention to my MO but am now prepared for his response!!!
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I saw my onc yesterday and she is still saying 5 years until the final studies come out. When I told her given what's going on with me (now osteoporosis... and I'm a bit young for that thanks to this drug and chemo) that we will weight the risk/reward benefit for me.
Love that my onc doesn't just tell me what standard care is but actually figures out what would be best for my care given my health history.
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