FEMARA

marijen

Hey tang, if it were me, since it's just about six months I would either email or call her with the when and why and/or reschedule the appointment for earlier rather than sit on it. How often were you getting scans before? Every six months or year. There might be something she would want to do. I wouldn't feel guilty, a lot of women quit AIs because of the sides. Is there something you want her to do? Like a pet scan to look for hot spots? Mine does that along with a CT. Just throwing it out there for you. The truth is the best, you couldn't face staying on it

ndgrrl

hi, I am curious on what a CTC test is testing? Thanks

tangandchris

October is the soonest since that is when my insurance will kick in from my new job. I suppose I could call ahead and tell them. I didnt get scans regularly, only if symptomatic. So I'm wondering if they will want something done. I guess its just a wait and see.

marijen

I don't think there is much you can do ahead of time until insurance kicks in but if it's the same MO then you can call ahead and leave a message. Sorry I can't imagine what she can do ahead of time. Do you take melatonin, eat right and exercise? October is only a few weeks away. It'll be good news if nothing new when you do get tested, good for all of us. I sure hope so, because I stopped a month ago

Bliss58

Ndgrrl, a Circulating Tumor Cell (CTC) test is a blood test that helps MOs assess the prognosis of patients with MBC. Some studies found that five or more CTCs in 7.5 ml of blood suggests a worse prognosis and fewer than five CTCs suggests a better prognosis.

ChiSandy

The reason older women are likelier than younger ones to get ER+ bc is a longer exposure to estrogen over the course of a lifetime. By 60, we’ve had estrogen coursing through our systems from puberty onward—especially if early menarche & late menopause, having taken the Pill or had estrogen therapy, with few or no pregnancies or breastfeeding. Over age 60, we’re also likelier to have a higher % of body fat, especially in the midsection which cells contain white fat (which produces the androgens that aromatase helps convert to estrogens) rather than beneficial brown fat which has a salutary effect on insulin response and fat-burning. And younger women are more vigorous with faster metabolisms, with the downside being that that vigor makes more aggressive forms of bc (triple-negative, triple positive. hormone-receptpr-negative/HER2+) more common.

marijen

So the longer we live the more chances we get to win the booby prize

dtad

marijen...please don't feel guilty. Its your body. We should not have to choose between recurrence and poor QOL. We need to speak up for better treatment options! My MO at a major university teaching hospital told me only 50 percent of us can complete the 5 recommended years due to SEs. This is just not ego enough! Docs should be working with us for a solution. Good luck everyone.

tangandchris

I'm open to another AI, but I don't have alot of hope that it will be much better. I was on Tamoxifen first and I struggled with serious depression and anxiety. I couldnt handle it...so I switched MO's and new one suggested hysterectomy and AI. Thats what I did and the Femera has been awful in a painful way.

I've done the best I could but it just seems like one set back after another. Honestly when I lost my job in Feb and then my insurance I really gave up. I'm picking myself up now but its been hard. Just so thankful I'm going to have insurance soon.

marijen

Tang, I'm wondering how old you are and why you had a hysterectomy if there was nothing wrong with that part. Why not just ovary removal? And the doctor didn't check your estrogen levels before all was removed? Well without more information it sounds strange to me. This is the MO you will see in Oct? Good for you pulling yourself out of severe depression. You did that on your own? Not an easy thing to DIY.

2ndGenBCA

TangandChris,

I tried 3 different versions of AI's and they were ALL like poison. The SE's were so debilitating that I finally said "no more!" (too many problems to list here - I've told the group about them before) After about 5 months of being off of them, I still struggle with painful SE's. I changed MO's and now I'm being encouraged to go on Tamoxifen. Not going to happen.

I don't know if this is appropriate, but I would be willing to send you the Arimidex (name brand) if you (or you and your doctor) want to give it a try. (you are in the U.S., right?) It's just sitting in my cabinet and I'd much rather have it help you if you would like. 

Please send me a private message if this is something you are interested in. I also understand if you decline - as you don't know me personally.

Hugs to you - I know this isn't easy. I've never been a quitter - but this time, I quit. So don't beat yourself up over whatever choice you make. We have enough crap to deal with! I have found this group very helpful and encouraging - ultimately, the choice is yours.

KBeee

If you can message MO before your appointment, that would be a good idea, so he/she is aware and can help you make the best decisions moving forward. They may suggest a different AI or something else to address side effects, or perhaps there are other suggestions. I doubt they will do a scan without symptoms because to do so would encourage women who want scans to stop their meds. You never know though; all MOs are different. I am glad your insurance wil kick in soon. Hoping that you're feeling better without all of the side effects, and that your MO has a plan to keepyou feeling good

tangandchris

Thx everyone 😊

Im 43, 39 at dx and my current MO never talked about suppression just right into surgery. I never knew there was another option until coming here and seeing others discuss it.

I am willing to try another AI. I know some might not understand my choices or agree with them but I did the best with what I was dealt.

marijen

Tang there is a new study that says restarting AI improves efficacy, so you may be better off having beenoff it for a while. I don't think I can post it because of permissions. To be pub. Oct 1. I think.

Here is the conclusion:

Conclusions: Our study provides—for the first time to our knowledge—evidence that restarting adjuvant hormone therapy is associated with better breast cancer outcomes. Clinicians now have further evidence to encourage patients to restart their treatment after discontinuation of adjuvant hormone therapy.

KBeee

Hoping you can find something that works without such horrible side effects. These meds affect everyone differently, and quality of life matters.

6cats

I've been on letrozole since April. I think I'm having SEs but not sure. So scattered... easily distracted, forgetful, moving slow... not depressed, but irritable. My PCP has me off migraine meds so they are worse too. Oh yes, weight gain too.

Your thoughts?

ChiSandy

I live with it. (Until the day comes when I can’t). One day at a time. Marijen, I nearly did a spit take when I read “booby prize.” Good one. (As the Elvis Costello song goes, “I was pumping iron while you were pumping irony”). But yes—the longer and greater our cumulative exposure to estrogen, the higher the odds of developing ER+ bc.

marijen

Here is the link for Restarting AI mentioned above

https://academic.oup.com/jnci/article-abstract/109/10/djx082/3114123/Restarting-Adjuvant-Hormone-Therapy-Improves?redirectedFrom=fulltext

MargoChanning

Posting something here (and probably other threads) I just found today while randomly googling estrogen phrases; while this may not be developed in time to help any of us, it is reassuring to know that some scientists are working to find ways to deliver estrogen to specific body parts - in this case, the brain - while leaving the rest of the body alone. This would obviously alleviate hot flashes, memory problems, sleep issues, depression - could be a game changer for people on AI's as well as anyone suffering through menopause in general. Here's the article: http://www.sciencemag.org/news/2015/07/safer-estro...

And here's the abstract: http://stm.sciencemag.org/content/7/297/297ra113?i...

marijen

So they are admitting AI is bad for us. That's good, it's a start.

marijen

I'm sure it's the Femara/letrozole. Sometimes I just can't think. So did you quit? I thought I saw you say you quit somewhere? You say Frightening? Did you see that BCO is going to take the Fright out of BC on Halloween? New topic.

marijen

From what I've heard, reconstruction is not all it's hyped up to be. But it is nice to have a place to figure it all out

marijen

You know my problems started getting worse end of May, after approx two years on letrozole

dtad

Wow! I would actually consider taking an aromatase inhibitor if this ever comes into fruition...

dtad

Bosomblues...radical mastectomies and no reconstruction is more than 25 years old! My dear cousin was diagnosed when she was 28 and died when she was 38. That was over 25 years ago. She had a modified mastectomy, radiation and reconstruction. She even had her nipples done. She also took Tamoxifen. IMO not a whole lot different than now. I would love to see some better treatment options, prevention and yes maybe even a cure!

dtad

Bosomblues...radical mastectomies and no reconstruction is more than 25 years old! My dear cousin was diagnosed when she was 28 and died when she was 38. That was over 25 years ago. She had a modified mastectomy, radiation and reconstruction. She even had her nipples done. She also took Tamoxifen. IMO not a whole lot different than now. I would love to see some better treatment options, prevention and yes maybe even a cure! Too many people still lose their QOL and die from this disease

MargoChanning

I'm closing in on my fifth year of AI's and I can definitely say my days of brain fog have increased markedly in the last 2 years, making my job particularly difficult. I get headaches from trying to concentrate and remember things at work. Even writing things down doesn't help because I will look at something I wrote and can't remember the context of what I was writing about. It's getting really bad. My current MO offers no help when I tell him I need to keep working for financial security and additional years on AI's would make that extremely difficult if not impossible. Not to mention the fatigue from chronic sleep problems (I take melatonin and occasional low dose Ativan but have to be careful about hangover/grogginess the next day if I'm working). I think my brain is running out of gas.

marijen

Margo it sounds like it's time to take a break from letrozole. Have you been to the Aromatase Inhibitors and Walking Away topic? I would look into getting a new MO that is more understanding and knowledgeable as well. JMO. Like you said you cannot afford to lose your job over this and you've done nearly five years. You can always go back on letrozole after a break. See what the difference is

MargoChanning

I had a great MO the first four years and then my employer removed the PPO insurance option and forced everyone into their HMO (Kaiser) so my MO choices are limited. My former MO, however, is very understanding and responds to my email queries when the HMO doc cannot or will not.

I'm literally within one month of completing the five years so I will stick it out to that date even though for all intents and purposes I've done the five years. As far as continuing for another five years, the current MO has been of no help so I've relied on my own research and my kindly former MO to help guide me with the decision. I'm fairly certain staying on an AI would lead to worsening of all the SE's I've experienced and maybe develop some new ones. I've already developed episcleritis, vitreous hemorrhage, arthritis, insomnia, worsening vaginal atrophy, tendinitis, memory loss. Although I was a high risk Oncotype score, I was stage 1 with negative nodes and clear margins and did 4 rounds of chemo so my former MO says taking all that into consideration I'm at considerably lower risk now than I was at diagnosis in 2012. All things considered, I do not see myself staying on AI's past the five year mark. I've been on a few month long breaks along the way, always due to ruling out AI's as the culprit in a new problem, which the AI's always turned out to be, and I know that I did start to feel better by the end of the month break so I'm hopeful that I will be able to recover at least some of my former good health.

marijen

Margo it sounds like you know what you're doing and farther along than most of us in determining the cause of your SEs. than most to begin with. Can you tell me how it was determined you have arthritis and tendinitis? What about anti inflammatory medication?