2018. diagnosed with breast cancer-stage one,left breast.Had chemo,surgery and 11 lymph nodes removed,and 2 months radiotherapy. 6 years later (3 months ago)metastatic breast cancer appeared as left side of lung nodule 12 mm,an early stage.Had a surgery.Upper lung lobe,and lymph nodes removed.Did Pet-scan 2 weeks ago.They found ms on my hip,5mm.
Now,I started Anastrasole 1mg (it has to stopp my estrogen lvl).Want to know,how you coping with side effects.
I feel sad,and think if I be able to have enough strength to taking Anastrasole bc.of sideeffects.
(My first one pill was this morning)
What to expect?? 😒😮💨
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Kim452
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Hi Kim, I am so very sorry you are going through this and am praying you don't have many symptoms to deal with. Have you gotten a second opinion? In 2013 I had stage 1, 1 sentinel lymph node removed which was negative so no others removed. Right side mastectomy no chemo or radiation. I took an AI for 2 years instead of recommended 5 because I wasnt tolerating the side effects, especially the joint pain, well. I could barely walk due to foot/ankle pain. Other side effects were hot flashes, insomnia, fatigue. All of this in 2013. Fast forward to 2020 and I have a recurrance, supraclavical node, metastatic stage 4. I take the same AI, letrozole as well as Ibrance, a targeted therapy. I have monthly blood work and scans 2x year. So far treatment is effective and there is no evidence of disease, or NED. My side effects are similar but more severe now, perhaps because I have been taking the meds longer or I am older (60 next week)?? I have also gained weight and lost muscle mass. I am seeing a private Physical Therapist and doing strength and mobility training. My diet is generally very healthy with exception of coffee and diet soda. 2 weeks off now! Looking into yoga options as well.
Looking back, I would have done a few things differently. Physical fitness, more stress reduction, Explored another type of AI and gotten another opinion.
To summarize the symptoms, I would characterize as similar to menopause. There are ways to mitigate with yoga, acupuncture, exercise etc. I found that sugar and alcohol really increased my hot flashes. Everyone is unique in their treatments, experience etc. There is no one size fits all. I hope my long response is a helpful in some way and wish you the very best results with your treatment.😘
Dear Lilchim,thank you for sharing your experience,where I found strength and hope,that I still can fight for life,whatever that means. I'll remember your words,and suggestions and change,and do what you did.
My first metastasis was shock !! I am still a bit lost,confused and,of course- scarred. Well,we all are...
In a month,my onc.will give me one medication more.I still don't know which one.I forgot to ask because of stress !!
Hi Kim452, I am so sorry that you are now in the MBC stage. But welcome to our group where we lift each other up. That said, will your oncologist be adding like Ibrance or another medication to go along with anastrozole? I am on Ibrance and letrozole. The letrozole is similar to anastrozole as it is an aromatase inhibitor and it reduces hormone in your body. Most common side effects with these aromatase inhibitors are joint pain and body aches and hot flashes since it basically puts you into menopause. The body aches can be painful but gentle exercise helps with it. If you get nauseated or diarrhea there's zofran and Imodium that really helps. Everyone's body is different so symptoms can vary while on anastrozole. Hugs 🤗 and prayers 🙏. Please let us know how you are doing on it.
First time around I was on Anastrozole with no side effects. This time had aches and pains with Letrozole. Since I cannot take NSAIDS because of kidney disease, I take as much Tylenol as possible/day (4000 mg/day) and a pharmacist-recommended curcumin supplement that also has black pepper and pineapple extract-something about calming inflammation. I have felt much better in the last few weeks.
Dear Monkeygirl62,when I first time diagnosed with ER+breast cancer 2018,after chemo,mastectomy and radiotherapy,I was taking Letrosole.Side effects were so horrible,that I thought I will loose my mind !! So,I stopped it after 8 months.Of course,we are all cope differently ....
Now,I'm on anastrosole and in a month,my onc.will give me more therapy that will go along anastrosole
Today is 6 weeks since lung surgery. Tomorrow,I will have a ct scan of mets on my hip bone(5 mm)
Oh wow 😳, I had issues with tamoxifin like that when I had breast cancer at 36 years old. I understand about the letrozole. The tamoxifin drove me crazy. This time, when I was diagnosed at 62 years old with MBC, the first thing I said no tamoxifin at all. My side effects I deal with now from letrozole is of course the body aches and pains like I have arthritis but it's manageable for me. The Ibrance though has killed my appetite and taste buds and I have nose bleeds and gum bleeds and bruises and all disappear on my week off Ibrance and (diarrhea issues too now on my weeks on). I really need to have my Ibrance dose lowered. Because I am on eliquis too and that contributes to nose bleeds and bruises. I have lung mets especially upper right lobe of 4 cm. I just got my PET scan done Thursday and it hasn't grown but hasn't shrunk either. Though other tumors are shrinking so the Ibrance is working. I know these cancer drugs everyone has different reactions to them. One person sails through it none to little side effects and someone else will have side effects galore. I wish I could give you a hug in person. Hugs 🤗 and prayers 🙏 for peace and comfort as you journey through this. Alicia
so sorry you are going through this. I was on Anastrozole for 6 years, along with Fulvestrant. No side effects from the Anastrozole. The other left me a bit tired the days after and after years I was getting hard lumps at injection site. I would LOVE to be on Anastrozole again! I had energy and it was easy! Hope it’s the same for you!
Dear Nocillo,thank you for writing me about Anastrosole 🙂It give me a hope,because when I was taking letrozole back than,in 2018-I have horrible sideeffects,so I stopped it after 8 months.In a month,my onc will give me also another one,along with anastrosole.
Maybe it will be Fulvestrant
She wants me to go step by step with therapy,because of that,how bad I was when was on letrozole.
Hi Kim, I took anastrazole for over 10 years.. until my cancer metastasized. I didn’t have any discernable symptoms. I hope it works for you without side effects. Try not to be sad: there are so many therapy options available. You haven’t had an easy time but hopefully going forward things will be smoother. Best wishes to you.
Hi,Helen🌸Thank you so much !!I started anastrazole,and my onc.will add one med. more in a month,so that both med.work together(I forgot to ask-wich one 😒)I will do everything to cope with mets.ca,and work also on my mental health.
Did your onc.give you another therapy after metastatic ca.?
Yes, at that point we stopped anastrazole and started Ibrance plus Faslodex (fulvestrant). Ibrance gave me a lung inflammation so we stoped that and started Piqray. I’ve been on Piqray for 16 months. Most people are able to stay on Ibrance or a similar drug (Verzenio or Kisqali ) for a long time. I think it is good that your oncologist is taking it slowly and is thoughtful about side effects. Take good care of yourself, do things you love and stay positive. You’ll do great.
I'm waiting now for therapy that goes along with anastrazole.(My onc. is trying to be careful, because back than,2018.I had very bad experience while taking letrozole)
And,I'm trying to be and stay positive....although- there are moments...you know,what I mean 😮💨
Hi Kim! I was on Anastrozole for seven years after original BC diagnosis in 2013 and having had chemo, double mastectomy & radiation. I was Her 2 positive in 1 breast and HR positive in the other. Had no side effects with Anastrozole and in 2020 when I was diagnosed as metastatic with lung involvement it was HR+ only. I was told then that taking the Anastrozole was the reason I was no longer Her2 positive. Knowing what I know now I would definitely be on it again, particularly because it was the easiest “maintenance” med I’ve ever been on. Wishing you the best in your journey. You’ve landed in a good place for information, encouragement and support. You’ll never be alone with so many of us who understand what you’re going through. Big virtual hug to you!
Dear Gingerann,thank you for sharing your experience,which is very similar to mine.My first mets,also was nodule on lung.Seven weeks ago,they removed my left upper lung and lymph nodes.Now,mets are on my hip 5 mm...So,after first diagnosis 2018.,this year,ca woke.
Next week,I'm going to have ct scan of hip bone,and will have treatment.
Thank you for encouraging me and giving strength.
With all of you here,it's easier to go,and to live longer(well...I hope)!!
Hugs to you, too,dear Gingerann.We'll fight all together....
Bonjour Kim, j'ai aussi un cancer du sein métastasé, les métastases sont apparues cinq ans après mon opération, pendant c'est 5 ans j'ai reçu anastrozole. Mais à la longue, le cancer, ce petit malin arrive à contourner le traitement j'ai fait une rechute osseuse l'an dernier, multiples métastases sur toutes la colonne et la voûte crânienne, donc on a changé de traitement avec verzenios et fulvestrant 500 mg au bout de cinq mois d'enfer j'ai eu kisqali , je l'ai supporte une semaine, à présent on me donne afinitor et exemestane, je viens de passer le scanner à trois mois de traitement deux vertèbres vont mieux et les autres lésions se sont stabilisées. Donc il semble agir efficacement, pour anastrozole je n'ai eu aucuns effets secondaires si ce n'est que quelques douleurs articulaires gérées par homéopathie. Par contre le dernier traitement actuelle me donne des douleurs très fortes, des tendinites et des névralgies apparemment dûes à l'exemestane. Pour les marqueurs on va voir j'appréhende toujours car lors du dernier contrôle le CA 15 était à 4200 😱 l'oncologue ne semblait pas être plus inquiète que cela, elle m'a juste dit bon on change de traitement car fulvestrant a fait effet mais pas suffisamment pour les douleurs articulaires je pense aller voir un acupuncteur si j'arrive à en trouver un dans mon petit coin de France. Pour en revenir au marqueur il faut savoir aussi qu'il peut monter très haut sur traitement car en mourant les cellules cancéreuses larguent leur poison c'est ce qui provoque des hausses impressionnantes mais toujours très inquiétantes pour nous car si au bout d'un moment les taux ne redescendent pas c'est que le traitement n'agit pas ou peu et alors il faut changer de protocole, donc pas d'inquiétudes excessives.
Hi Kim, I'm sorry to hear you are going through all of this. You went through a lot but things will get better. You might do very well on the anastrazole with minimal side effects. The best thing you can do is exercise or keep active which helps your body heal. Your lungs need exercise as does your heart, muscles, so keep an exercise going like walking or whatever you enjoy doing on a daily basis. This can help with joint pain, hot flashes, and help you sleep better.
I took anastrazole for 6 years for ST 2 HER+ , bilat mastectomy. Now with MBC I've been on letrozole and Ibrance for the past year. Movement like walking, stretching, yoga, meditation and hiking keep me grounded most of the time. Everyone tolerates the aromatase inhibitors differently so there is not always a solution.
I am saying prayers for you.. sending you a big hug.
Dear Artesa,thank you so much for your encouraging words,and great suggestions,so I can cope in everyday life with all of this.Today is 6 weeks since my lung surgery(well,it was painful, but manageable)and I feel much better.
So I can start some activities to continue with therapies for mets.
Hi Kim, I've been on Ibrance for a year and have no side effects to report. However, the 125 mg dose kept my absolute neutrophils too low so the dose was lowered to 100mg and I'm just a point below what they'd like to see which is 1000 but I'm taking it. I think I might experience a little fatigue towards the last week of the 3rd week taking it but with the lower dose even that wasn't too noticeable. I forgot to mention I have a lot of hair thinning but learning to live with that since it doesn't impact my activity level.
Suggesting that you look into High Dose Melatonin. I began with 10mg at night, then increasing to 180 spread throughout the day before jumping head first into 4gms/day (before 3pm). (You need the natural light to turn off the pineal gland's reaction to melatonin--> sleep.) My last Pet reversed lymph mts and my tumor shrunk by 10% in 6 mos. Here are some papers to read:
Dear wandererwanderer,thank you so much for your post and suggestions.I looked for readings you gave me,and it feels so good to know more...Melatonin...I'm amazed to get know about that!!
16 years ago I was diagnosed w stage 1 breast cancer in my left breast. The tumor was small, so treatment consisted of lumpectomy, radiation and 5 years of Anastrosole. The side effects did not start until 4 yrs had passed and consisted of foot pain bad enough that I could barely walk. The drug was stopped and the pain went away.
Ten years after the original diagnosis my annual mammogram showed a recurrence in the lymph nodes under my left arm and spread to the spinal column and ribs. I started on faslodex shots monthly and ibrance 21 days with 7 days off. I’ve had only weird side effects - my eyelashes fell out and my hair thinned. I feel quite good, almost normal. I’m still on the same drug regimen. Breast cancer treatment has changed so much and there is so much more hope for the new treatments in the pipeline.
I am a natural born worrier. The thought that helped me through the uncertainty was that I can only control my own behavior so I can only follow instructions. Ordinarily I’m not good at that. But I also realized that I’m not a cancer expert. After the diagnosis I got a second opinion at Nortwestern Medicine. Both doctors told me the same thing. The doctor who gave the second opinion told me that any competent oncologist could supervise my treatment.
Dont give up hope. There are a lot of alternatives. One will work for you. (Sorry for the long post)
Dear POT2018ery,please,don't be sorry for your long post.I could read or talk for hours because we understand each other,so your post gives me a strength and support on this path we walk together.I'm scared and sad-but I'm trying to accept new way of life.(I'm not quite good at that)Now,I'm waiting for another therapy in a month.I don't know which one.I'll ask my onc.
I will not give up hope,---thank you for your post. Best wishes,to you,too,dear POT2018ery.
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