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Side Effects of Arimidex After Almost 2 Years

I'm new to this site but maybe this will be of interest to someone. I have been on Arimidex for almost 2 years now, having had a mastectomy in November 2003. Firstly I had hardly any side effects and slowly but surely they seem to be building up, some days far worse than the next. I have never had nausea though, thank goodness. The main side effects which I am experiencing now are aching bones and joints, mainly while trying to sleep at night. Also tiredness and seem to want to just go to bed to rest from as early as 8 in the evening - this is sad as I always went to bed late before my breast cancer. I also contemplated coming off the drug but decided that as the cancer hasn't come back at all in almost 2 years then perhaps I am doing the right thing in taking it every day.

Wondering wether this might be inflammatory breast cancer

?Hi, I've been having these spots turn up for the last year and a half or more. They're the size of a bug bite, but definitely aren't bug bites. They're bright pink to red, a little larger than a pencil eraser. They appear not just over my breasts but also appear in my arm pits and the under skin of my upper arms. While they can appear over the same area on both sides of my body, they predominantly show up on my left side. Also, my breasts or arm pitswill itch like mad for no good reason, out of the blue. Sometimes the itching is localized to a larger bright pink/red "hot spot"--about 4" in diameter, usually on the upper part of my breasts, the spots are inflamed, itchy, bright and hot. They're definitely not hives. The only other thing I have going on locally is that I've recently lost 1/4 of my lung capacity in the last year. I've also been increasingly tired during the day. Overall, systemically, I have about 7+ moderate to mostly severe autoimmune conditions. Raynaud's showed up first when I was still a toddler. Next came RA which showed up around age 8. Endometriosis turned up at age 11 and was stage 4 pre-cancerous by 19, had a hysterectomy for that at 22. The RA flared up in a major way in my 30's, barring me from much work. Next came Lichen Planus, severe, erosive and persistent every day to this day. Next came severe photosensitive central nervous system Lupus. No cure for that one either. Now I have to live inside in dark rooms while wearing light protective clothes all the time, indoors and outside. This one officially put me out of work and on disability. Next came Hashimoto's disease, for which I lost my thyroid. Then came Sjogren's. My tear ducts were cauterized for that, still my eyes are to the point where I have corneal damage and Latice-form retinopathy. Sjogren's also took all of my teeth 3 years ago. Severe migraines came on about 3 years ago, so I get shots in my head, face and neck every couple months for those. I'm in my early 40's. I'm wondering whether I might have Inflammatory Breast Cancer and, if so, who might my options be to have someone diagnose it. Thanks so much for replies!

Partial vs Full Lymp Node Dissection

Hello. I have Stage 3 breast cancer, due for a Mastectomy in a few weeks.  Three or 4 lymph nodes were involved.  I have responded well to chemo, the tumor has shrunk quite a bit.  If cancer is found in my nodes during surgery, I need to decide whether I want a full dissection or a partial- only taking the nodes that have cancer and leaving a margin of them behind.  The possibility of lymphodema really scares me, as does the possibility of recurrence if I don't have them all removed.  Anyone have any insight on this? 

Breast calcifications

Hi  So I had my first mammogram in November 2016 which they said they would want me to come in from additional screening and mammograms. I went in Jan 2017 and had a diagnositic mammogram plus an ultra sound. They said I have calcifications that are grouped together and they need additional screening or testing. They said it was a 15% chance it was something. BUT that leaves a 85% its nothing. I am NOT saying early testing or detection isn't important. I have also had Cervical Cancer -9 years ago, I understand cancer. I also had 2 years of false positives and crazy treatment options offered that I did not go with. My second opnion docs treatment was the least invasive and I am 9 years cancer. I never had raditation or chemo. I guess I am looking for others who's calcifations have lead to more. When I search online I only see other treatment if it comes back positive. Has anyone on here had calcifactions that lead or then lead to breast cancer?  

What helped my Mom, and Why I do it today

My mother and sister are both Breast Cancer surviors, But during the begining stages they went through depression and anxiety, As a therapist in Hypnosis, I was able to relax the thoughts, which in turn, helped them believe in themselves and connect on having a future. to this day, I give mom and my sister sessions in hypnosis to keep there mind and body feeling positive, as I always tell them we are what we think. Presently, I live now in europe, but I am fortunate to work with hospitals around the globe, helping people reduce anxities and fears, the Doctors I work with in Oncology, have said it has been a real compliment to the patients treatment. I blessed to have this gift to share and help others. for the Greater Good, Gregge

2 years after chemo, my hair has not grown back

I was diagnosed with breast cancer in February 2006, I began chemo (doxorubican, 5FU and taxotere) in March 2006 and had my last treatment in July 2006.  I only have a few sparse hairs on my head and my hair has not regrown.  I don't understand this since I had very very thick curly hair.  I have used Nioxin and am now using Rogaine in an attempt to get hair.  My body hair, eyebrows and eyelashes only have sparse hair also.  Do you have any suggestions or help?I miss my hair. Please help.

Herceptin POLB2

I would like to know what your opinion is about taking this chemo if you have heart disease in your family. It seems to me that the health issues out weigh the benefit of getting this. I have POLB2 gene which has made me a guinnea pig for the medical community. I would rather not do this and take my chances that the surgery will remove the cancer and I will have no recurrence. however if there is a recurrence I would rather my heart be healthy and my body. please list any experience you have had with POLB2 or herceptin.

Possibilibity of reoccurence after breast cancer treatment

Hi .. My SIster had breast cancer and got treated. fter 2.6 years of treatment she is having dry cough since 7 days before had cold. Is it the possibility of recurrence pls let me know

The effects of chemo after treatment (stage 3 testicular cancer)

I was diagnosed with stage 3 testicular cancer in 2015 and was curious as to how others have noticed changes after treatment. It's been 2 years and I feel like my hair is noticeable thinner. I developed eczema on my scalp, inner ears, eye brows and upper lip. I felt like it was just my skin reacting against my hair growing back or dandruff. I feel like I have short term memory loss as well. At first it was kind of funny, but I have trouble sometimes remembering where I parked my car or someone's name after meeting them or simple instructions. Also my stamina is all over the place. Some days I'm fine playing a few full court games of basketball and others I can barely finish one. I'm re reading this and I sound pretty crazy. I'm just curious if there is anyone else out there that is experiencing any of this or something completely different. Thank you for your time.

Metastatic Breast Cancer

Hi My mother, Roya ( 49 years old ), was diagnosed with breast cancer in oct 2011. At that time, she had the mass with the size of about 1.5 cm which has been confirmed with invasive ductal carcinoma with histologic grade 3 ER positive in >90% PR positive in 30-40% p53 positive >90% of tumor cells and HER2/NEU equivocal with no lymph node metastasis. She has been under gone the operation (lumpectomy) with free margin and 10 sentinel node biopsy which where all free for metastasis. So, she had the T1CNoMX stage. Then she had four sessions chemotherapy and 31 sessions radiotherapy and then she started to use tamoxifen tablets. Then she has been followed up with sonography and mamo which showed the right axillary lymphadenopathy. It has been followed till based on the patient's decision she had the operation to expel the lymph nodes which showed lymphadenopathy (23 July, 2013) the diagnosis of tissues was 2 lymph nodes metastatic from 5 lymph nodes. Because of that she had 6 other chemotherapy sessions and tamoxifen changed to femara . Six month later (May 2014) one nodule was discovered at the base of the right lung in CXR but in the thorax CT scan after that no nodule was seen. So, she repeats the thorax CT one and six month and one year later but all reports were normal. Until in (17 Feb, 2017) she had the headache and vertigo and vomiting, in the brain MRI metastasis were reported which one of them was greater in cerebellum so she had 15 session radiotherapy. Then for work up metastasis thorax, abdomen CT scans and bone scan have done (all the reports are attached). The oncologist prescribed Palbociclib tab and Fulvestrant ampules but through this treatment the tumor markers raised up. So, her doctor decided to start the chemotherapy for her. please let me know your opinion about the treatment and the medicines which can be used for this patient and also new methods of treatment.

Lobular cancer

I have lobular breast cancer and was wondering if there are any new treatments for this cancer type

Long term muscle weakness from taking Anastazole

After a mastectomy for breast cancer in 2003 I reacted badly to Tamoxifen and after a year was moved to Anastrazole. Very rapidly I had a very acute reaction to it in my bones - ALL of my bones, except my left jaw bone. After 8 months of severe pain this was diagnosed as Polyarthralgia and I was treated with high dose I/M Depomedrone.  The beneficial effect only lasted eight months and then the injection would be repeated. Having a flu injection would start it all off again. Eventually I was seen by someone researching the adverse effects of Anastazole and he asked me if I skied. I said I used to but had had to give up because I could no longer hold my curves.  He said this muscle weakness was a direct result of taking Anastrazole and it would continue.  NOW, thirteen years on the muscle weakness is considerable, particularly in my legs.  Has anyone else experienced considerable muscle weakness? I can barely get to my feet again if I bend down. After a rare fall, I really struggled to find the strengtht to get up! It is a very unexpected long term inconvenience.

Cancer smell

My partner (64) is a breast cancer survivor. She had a lumpectomy, radiations and chemo over ten years ago and her annual mammograms have all been negative(she had one two weeks ago).To make a long story short, while we were intimate recently I smelled cancer near her left breast ( my mom had breast cancer, and I will never forget the smell) She is going to get and ultrasound, probably within the month, but other than that is not taking me seriously. I am very upset about this. Am I over-reacting? I care deeply for my partner and don't want to lose her. Does anyone have any input?

Post chemotherapy seeing the onocologist

How often do any of you reading this see your onocologist after your  chemo treatments were finished and diagnosed as most likely cancer free?

Has Anyone Been on Aromasin and Are They Getting Side Effects?

Hi everyone I have been taking Arimidex for about 2 years and have been getting such bad side effects of joint and bone pains that the oncologist has taken me off it and is putting me on Aromasin. He said that they are all aromatase inhibitors therefore I could get side effects from this medication also. I just wondered if there was anyone out there who has been on Aromasin for a while and if they are experiencing side effects from it. I have to try something as the pains were worsening by the day and I was feeling that I was aging far too quickly! I do hope that there is someone out there that can help me on this one. Regards Ros.

Integrative therapy for Metastatic Breast Cancer

Hello Everyone, My mum has been diagnosed with Stage 4 breast cancer having metastasised to her right lung and bones. I have been doing a lot of reading on various protocols and been in touch with nutritionists, oncologists and different practitioners from different parts of the world. I read the book on radicalremissions by Kelly Turner and following the 9 point approach, which is wholistic healing. Unfortunatelyintegrative oncologyis not practised where mum resides. Following is our approach and we need help with this cocktail appraoch, though it is considered herbal and not of any side effects. 1) Mum's currently on hormone therapy of Letrozole and Zoledronic Acid. 2) She is ondietof cruciferous vegetables, no sugar, no meat and no processed food. 3) She has 3 green juices and 3 carrot/ginger juices as reccomended by our nutritionist. 4) She takes supplements of vitamin D(10,000 IU's), pectasol C and beta 1 3d Glucan. 5) We will be starting with tibetan herbs which has shown effective results in a clinical trial. 6) She is on a 6 course cycle(8 in one course of alternate day) of mistletoe therapy. 7) She practices Yoga, QuiGong and Pranayam. Unfortunately, I do not have any oncologist who can help me with this cocktail effort and warn me of any side effects. Could anyone on cancercompass, help advise me on the current protocal and suggest any pitfalls, side effects or anything which I should reconsider. As you can see, I have tried to research my best but I am a software consultant and not a Dr. Everyones experience of an ER/PR+ metastatic breast cancer remission stories will help. Regards, Sumeet

I think I have signs of breast cancer

I'm 17 and I know it's rare for someone my age to have breast cancer but only one of my breast hurt sometimes it's constantly other times it's not I have ended up with scabs on just one and the scabs don't go away and to wear a bra only makes it hurt worse but I can't go see a doctor because of financial issues so if anyone can help me figure out what u can do feel free to message me-xoxo

Triple negative

Anyone have triple negative breast cancer that has had a recurrence?

Side Effects Arimidex

I have been on Arimidex for 1 year now.  I do not have "bone" pain but I am not sure what that is.  I got some bad fish and quit taking my coctail of vitamins for 4 days and my hands hurt like crazy.  Felt like my tendons were on fire.  I went right back on my vitamin coctail adn within a week my hands no longer hurt.  If any one wants what I take I will be happy to tell you, I just have to go and look at my bottles.  I got the vitamin idea from breastcancer.org people.   However I am so tired all the time.  I get up do some chores and after 3 hours I need a nap! I nap and I am still tired.  Anyone know a remedy for this?    I have a woman I know who's husband was an oncologist she had lobular like me and has lived 18 years.  Her husband says that the tamoxifin and arimidex kept her going along with other chemo drugs.  Sadly she is now dying but she had 18 years got to see her grandchildren.  

Side effects of treatment for breast cancer

I was diagnosed with breast cancer stage 3 er/pr +  her2- in February 2016. Received chemotherapy and radiation. This was hard on my body but have started to gain my strength back.  In May I attended a meeting and my breast was sore and started to swell. This was on a Friday and by Sunday I had to go to ER. Admitted for IV antibiotics and drainage of fluid from breast. Then a pocket developed on the outside of breast and small incision was made. Now we are packing the whole every day.  Has anyone ever had this?

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Newly diagnosed

Have been diagnosed with a 2.5cm tumor  idc with the additional biopsy of the one.suspic ious lymph node that was positive.  Now I am totally freaked out.  I cannot stop feeling like my whole body is full of cancer and every ache and pain means it has spread. I haven't stopped crying since Friday and cannot even believe I will be.alive in 6 months.  Wish I could turn my brain off.  Don't see the surgeon until the 28th.  Gonna loss my mind with worry.   Is this nornal?


Hello my sister has Hodgkin lymphoma and she finished the chemotherapy sessions. She's 25 years old and she just got the results of her pet scan.. this is the 1st time that she had the pet scan and we don't understand some of the terms and the meaning of the results,  I was wondering if someone can help me. Thank you so much. Abdomen, pelvis : GI genitourinary FDG activity psychological.  Retroperitoneum: small nodal hypermetabolism left obturator region is SUVmax 3.0 and right and left inguinal nodes is SUVmax 2.5. Urinary bladder, rectum and pararectal space: There is a focal area of hypermetabolism in the right adnexal area measuring 18mm in diameter is SUVmax 8.1 of unknown clinical significance.  Impression : minimal nodal hypermetabolism left obturator, right and left inguinal region is SUVmax 3.0 - focal right adnexal hypermetabolism 1.8cm in diameter SUVmax 8.5 to correlated with clinical and MRI findings.  I really don't understand what all this means. She's having the treatment in México and the pet scan was applied in USA. I just want to know if she's going to be ok.. all the others organs and body parts the result was unremarkable. Thank you. 

Metaplastic Carcinoima Triple Negative

I've yet to come across patients surviving with this subtype of breast cancer.  I would love to connect with others who have been diagnosed with this!


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