Life on aromasin
Comments
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JustJean, I am so very sorry to read of your recurrences and your progression to Stage IV in particular. But, as I looked through your history, it appears that you took your first AI after your diagnosis of ILC which is an invasive BC, not during the time after your diagnosis of LCIS in 05 and 06?
Am I correct in the assumption that you did not take an anti-hormonal after the LCIS and that you had a recurrence of that first and then moved up to ILC in 2010? Wow, so unfair that you had to endure this beast so many times in a 10 year period.
I agree that no one is out of the woods at the 5 year or even 10 year mark with BC. It is an awful insidious disease that can occur and recur any time it decides to. I guess I now understand why my MO insists I take the AI even though I have DCIS. She said that as long as I can take it during the first 5 years, the more protection I have from both recurrence and from a new cancer in the same or other breast.
Some of us are prone to making cancer for some reason yet to be understood. I also had an in-situ cervical cancer almost 40 years ago and although they know it comes from HPV virus, it is unknown why some women never progress to cancer from the virus and some do. I only had one sexual partner (my ex husband) at the time and so did not have the risky behavior they look for in some women so my ex must have gotten it from someone and passed it to me. I was 22 years old when I got that diagnosis and married for several years already (I know, insane but lots of us married very young years ago!!
It was discovered when I had a miscarriage and they did a routine pap smear. We had been trying to have a baby for a year and sure enough, that miscarriage may have saved my life! 0 -
April
I married at 17
He was 21. No, I wasn't pregnant just in a bad situation and we took a chance.
I asked him what if we marry and we are unhappy? He said we would divorce and he would be my friend forever.
That was 39 years ago.
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april - I was also diagnosed with cervical carcinoma-in-situ during a routine pap when I was younger. I remember being so scared going into surgery, but the nurse said to me, "Don't worry. It was caught very early - it's not even considered cancer. I had this done many years ago and never had any problems since and that was over 30 years ago." She was right. So far, so good. It's now been almost 30 years for me and I never even think of it. But having any kind of cancer diagnosis is just so scary. The uncertainty can be overwhelming. I guess all any of us can do is enjoy each day that we are given and hope for the best.
Raidergirl - That is a wonderful thing - friends forever! Hubby and I have been married 35 years. We were not able to have children, have weathered many storms and now this. Having married so young, I'm still amazed we lasted this long!
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RaiderGirl such a nice story. My husband and I were friends for 6 years before I went out with him. He told me that he didn't know if he could be just friends with me if our romantic relationship didn't work out. We were engaged after 3 months of dating. Married for 20 years. But known each other for 30.
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bc101 No kids here either.I am the only babe in the house and I am spoiled.
Not a bad way to live.
Lago : Well good thing it worked out. Happy 20-+10 .
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Love reading about the romance you all share with your hubby. I am divorced from my childhood sweetie (we were married 29 years but his mistress VODKA ruined that relationship so I finally found the guts to walk away) and he recently died (like two weeks ago today actually) and it hit me very hard as we were married for a long time and he is the father of my two wonderful children. He just never took care of himself...sigh.
I am remarried for 8 years to a wonderful man who makes ME his priority and I am grateful. We have been together for almost 12 years now and I now know what it is like to live with someone who does not drink like a fish!
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April
Sorry to hear of the passing of your first husband. There has to be a part of you that still loves him because you knew his qualities before alcohol changed him . I hope some of those live on in your children.
As for prince charming that you have now. You deserve him. Be good to him too.
It always amazes me how DH will move a mountain to make me happy. He loves to say "That's my job, I'm the husband"
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Thanks RG...appreciate the condolences. I do still love him and always will. For a very long time, I thought he hung the moon. He was an amazing man with a lot of very good qualities but he was killing himself every single day and I could no longer watch. I was a big enabler and then I flipped the switch off and finally was able to walk. But, there is a good man who loves me very much that I get to spend the rest of my life with and I am grateful for this. I was not looking to remarry but letting this one get away would have been insane! LOL
I just wish that the exemestane was not ruining who I am so much... between the little pill and the BC, I am not the same person anymore and I am finding that very hard to swallow. But, this pill is the best defense I have against BC, so I swallow it gratefully every day.
Hugs to all and to better days ahead!
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If you are ER+/PR+ no chemo or radiation but have had ovaries removed that would lower the amount of estrogen except from the fat on our bodies right? I hate this. I did not have chemo either and a very low Oncotype and I am about ready to say I want a round of chemo!
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This life journey and BC journey is so complex and layered. I appreciate all of you and the challenges and truiumphs you share. We have the same goal and how we get there can be so different as well. As someone said BC is a horrible disease. It is NOT Pollyanna Pink. It does change us physically and emotionally. It also shows us the strength we didn't know we had maybe, and the blessings that are hidden within the pain.
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I hope you will all forgive the fact that my short term memory will not allow me to recall who asked me what... plus some of the things y'all asked got answered by other people.
When I had my first three occurrences, all LCIS at Stage 0, the Veteran's Administration (my health care provider at the time as I had no insurance and am a veteran) told me each time that I did not need any further treatment than the lumpectomies. So no AI.
When the ILC (Stage IIB) came along 5 years ago is after I went to the Cleveland Clinic. After the mastectomy and chemo they put me on an AI. I had a lot of SEs from Arimidex and they got worse as the years went by and I ended up taking a break for a couple of months. My MO at the time said it was okay to do and wouldn't cause any problems. He then retired.
My current MO thinks that the break is what did it and allowed the ILC to "go for it" and that the Arimidex was then ineffective after I restarted it. I don't know whether to believe her or not. Makes sense, tho.
I wish I had known then what I know now. That damned hindsight is always 20/20, isn't it? I would have insisted on an AI at the first diagnosis and would not have taken that little break. Yeah, I started to feel a bit better after about a month, but look what I got out of that break - Stage IV.
I had my PET scan today. My MO is sick so I probably won't get results until Monday. I sure hate this part of it.
We all do what we think is best for our situation. My decision is to keep taking these little pills until all of them quit working (and I hope that never happens).
I think the point I really wanted to make is that Stage 0 is no protection for some of us. It's a false sense of security when so many of us are not "cured". And 5 years of an AI is not necessarily going to give you the "Pass Go, Collect a Lifetime Without Cancer" card. I try not to dwell on the "what if's" because I made the choices I made based on the information that was given me, but sometimes my brain does go there until i smack myself mentally and tell myself to STOP IT ALREADY.
JJ
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JustJean,
Don't beat yourself up. There is no way to know whether or not anything you did or did not do caused the cancer to recur. Will all the stress I'm under now cause me to recur? Maybe? Maybe not?
RaiderGirl,
My Oncotype was 30. Too high to skip chemo. Also had very low PR+ and high Ki67, so chemo wasn't a surprise. Some Grade 2 cancers score higher than grade 3. I think establishing a grade is somewhat subjective.
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I agree...you can't beat yourself up. Lots of women take a break from AI's or don't take it at all and never recur. I don't think your doc can conclude that with any certainty. It's all just a guessing game. I think we all play that game with ourselves and like you said, JJ, you eventually realize the futility of that kind of thinking. Easier said than done, though. Have a great weekend everyone!
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For what it's worth, I took tamoxifen from 2000-2005 for my first bout of breast cancer (stage 2B, 100%ER positive). I was diagnosed with a new primary in the same breast in 2014. So while it seemed to "cure" the first cancer, it didn't stop another one from popping up 9 years later (which probably had gone undetected for several years even tho I had the 3D mammogram). So I'm not sure what they mean about it protecting you for 10 years after you stop taking it.
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It is important to keep in mind that just as single cases (like everybody's uncle who is a lifetime smoker and never got cancer) do not generalize to the larger group, group statistics do not perfectly specify to each single case. The probabilities are all we have.
Here's a question about side effects. I have been feeling really good the last couple weeks, energetic, sleeping well, etc. I changed my time of day and started taking exemestane in the morning with breakfast instead of at night, and I upped my calcium/vitamin D. Okay. So yesterday and today: nosebleeds. Not like big time gushing or anything just like dryness or high altitude nosebleed? Anyone else had this? Very weird. The weather has changed recently so maybe it is that??
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Interesting article on a new drug for those with advanced or resistant ER+ breast cancer:
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Professor I too had a few nose bleeds a few weeks ago. It can happen in the winter when it's dry so it surprised me. I've been on exemestane for a year now. I did add another med in december that I find also seems to make my dry eye even worse so maybe I am drying out more.
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if your nose is dry, have you tried saline sprays to moisten the nose? my ENT has be using them for my sinus issues and very easy
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Thanks for the suggestion--I am going to pick up a saline spray today. I guess it is just some kind of drying... that may or may not be related to the meds. Trying to keep reminding myself that not EVERYTHING is due to meds....
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no nosebleeds here but funny that you switched to breakfast. I had started at breakfast and by 10am was so tired I couldn't focus or have a cogent conversation. Switched to after dinner and feel great. Still surprised I feel better on zoladex+exemestane than tamoxifen. So weird
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RainDew,
I also switched to taking my aromasin after breakfast. When I was taking it in the evening, it was keeping me awake at night! I'm also feeling pretty good on zoladex + aromasin, give or take a mild hot flash.
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I take it at night and haven't had any problems other than an increase in hot flashes. I've been on Effexor for years but it doesn't seem to be helping anymore. Has anyone tried acupuncture
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Just checked. Another med I'm taking (for SE of AI) does have nosebleeds on there. Mystery solved for me.
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Les
The hot flashes were killing me. These were extreme nuclear, outer space hot flashes.
MO Rx'd Megace 40 mg. Stopped the SE in a week. Now I get cold.
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I've been on Exemastane a month now and I am beginning to think that the reason I've been getting more leg, hip and shoulder blade pain is the switch from Arimedex, I never had so much pain with that one, stiffness but no pain, now I am in pain all the time. I had a PET scan yesterday and will get the results next week so we'll see if it's the med or something else, weird when you actually pray is just another SE and NOT progression.
Aurora
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Aurora I had more muscle pain with Anastrozole. I have a friend who had more pain with Exemestane. It could be the drug.
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ElaineThere
If I take aromasin in the morning I get hand shaking so bad I cant put the key in the ignition.
WTF is that all about?
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Ugh, RaiderGirl, I have no clue! I take three meds after breakfast (6:30 am): lisinopril (blood pressure med), aromasin, and celexa (SSRI). I have to admit that I feel pretty spacey when I'm driving the twins to school around 7:15 am. By 9:00 am, though, my spaciness has cleared up and I'm more-or-less functioning as usual. I should note that I don't get many SEs from meds. Had mild SEs from chemo and rads, and my SEs from aromasin have been hot flashes and moodiness (cleared up by celexa).
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Aurora, hope your scan results are clear. I switched from Arimidex to Aromasin 1.5 years ago because of the joint stiffness. Until a few months ago, I was singing the praises of Aromasin for relieving the stiffness. Now I have BOTH stiffness and pain in joints as well as straight limbs. Scared, I asked for a bone scan, sure I had mets in bones. Scan showed NO cancer. So I guess it's just a SE that took a long time showing up. But the scan made me feel much better mentally. These are strong and strange drugs!
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Raidergirl, I thought Megace was an anti-hormone drug. I didn't know it could work on hot flashes. Usually they cause them!
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