Doing Well on Aromatase Inhibitors (AIs)
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bananas and tonic water can help with leg pains (if you add gin to the tonic, you will feel even better
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heck gin makes anything better lol
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I developed restless leg syndrome and cramps in my legs and feet especially at night. My doctor suggested taking Potassium and Magnesium supplements. It worked! Just don't take high doses of either. When you think back, many of us increased our water intake DURING chemo, and we increased our exercising AFTER chemo. This causes Potassium and Magnesium to leech out of our bodies as we sweat and urinate. Makes sense, right? Therefore, we need to replace those minerals. The doctor said 1/2 banana at about 3:00pm everyday will help replace some of the Potassium. As for Magnesium, only take 250mg per day unless you have constipation problems. You can increase Magnesium to 400mg per day for relief from constipation.
I agree with Butterfly, Claritin is great for aches and pains. It even helps to prevent fatigue during radiation therapy. I don't know why it works, but it does.
Hope this helps.
Meg
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I'm jumping on board! I started anastrozole last week. I had been on tamoxifen for a year. I did well on the tamoxifen. No hot flashes or body aches just a little brain fog. My periods were like clock work before my LX in Feb 2017. Started Tamoxifen March 2017 and never had another cycle. Blood work at oncologist last week showed I was post menopausal. I was switched to Anastrozole after that appointment. I was so angry! BC just keeps flipping my life around! So far I'm doing "ok" with the medication change.
Meg- thank you for the info on Magnesium. I had been taking it before at night and forgot to ask my pharmacist if it was ok with the Anastrozole.
Always be a warrior!
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Vargadoll, don't know if this helps but my MO said it was fine to take magnesium with anastrozole. Her exact words were "it won't hurt but it won't help either". (She has a great bedside manner.) Here's hoping your SEs are nonexistent!
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I had been on letrozole for a year. Too many SE affecting my work and ability to get around. MO took me off for 3 weeks, and I feel so much better. So now MO and I need to try another AI. This isn't an easy process, but I am sure I will find one that works.
For those of you just starting, give it time. I went a long time without SE, then they started up after 9 months.
It just goes to show everyone is different
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Hi all!
So glad to find this thread, all the negative SEs members report are making me a tad nervous. I’m due to make the switch from tamoxifen to an AL in December so I’m doing my research now. I have 2 questions I’d appreciate any input on...
1. Is there a more tolerable AL among the choices/types or is it more a matter of ‘try and see what’s best tolerated by my body?
2. Does the % of ER+ play into the decision to switch?
My onc said I just squeezed into the ER+ at 15%, leaving me to wonder if staying on tamox is ok as I tolerate it well.
Thanks and my best to all!
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I've heard Aromasin has the least SEs. But you can stay on Tamoxifen post menopause.
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Is my estradiol (15-20 pg/ml)level too high while on Aromasin?
I have been on Lupron + Aromasin for more than 8 months. My Estradiol has always between about 15-20. I know ovarian function suppression from Lupron is working，I haven't had period for almost 1.5 years, but is it not low enough for Aromasin? I have seen online many women could get to under 5pg/ml with AI. I am afraid Aromasin is not being effective while Estradiol is not low enough. I do have a lot of SEs from Aromasin.
Thanks！
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So glad to see this thread. I want to move forward, SEs and all with a more positive bent. So much good info! I'm struggling with hip pain but I switched from treadmill to elliptical and that was good. I saw the list earlier in the thread on favorite sneaker brands so I plan on checking those out as well.
Here's to my new normal, such as it is.
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Wlelcome smeusaf! We have a lovely community of sharing and support. While “doing well" is a relative term, we all have our share of ups and downs. Some days are better than others. Hopefully, you will find some helpful tips to guide you through what I call this BC maze. Hugs to you and all!
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Thank you Butterfly1234!
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it was recommended by my oncologist that I start taking Aromasin after my visit with her which was about 6 months after having double mastectomy with lat flap reconstruction. As far as I understand, I have NO breast tissue...just the muscle from my back. Why would I be recommended to take this drug if I have no breast tissue? I am confused and in search of other perspectives and information.
I declined at the time to take the meds for the above reason. I just want to make sure I am making the right decision. I would have to take it for 10 years! What???
Thank you, everyone!
"Owly
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Welcome, Owly. We are glad you found us here.
Your surgery got all the visible breast tissue, but it is not possible to get collected every little speck or cell. Moreover, in any cases of invasive breast cancer, there is the possibility that some breast cancer cells have spread through the bloodstream and/or the lymphatic system. The anti-hormonal medicine can prevent or delay disease recurrence, saving or substantially extending our lives.
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Even after menopause, estrogen is still produced by the adrenal glands. For estrogen driven breast cancers, shutting down the estrogen deprives escaped rouge cells of their fuel source.
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I had an MO give me a really good explanation because I was thinking the same thing Owly, if the surgeon got the complete tumor with clean margins why would I need radiation and then the AI's? It seemed like overkill....
She said that since my cancer was invasive ductal carcinoma there was a potential for even micro cells to have broken off and entered my blood stream or lymphatic system or were hiding in the breast tissue that remained. If that occurred they are looking for estrogen (in my case) and the goal of the AI is to starve them so they die before they land on my liver, for instance, and grow. I also found it interesting that if that happens, they genetically test any new cancer and it's only considered a recurrence if it matches my original tumor. So it could look like liver cancer but it would actually be called breast cancer in my liver (or something like that). If it isn't a genetic match then is just a whole new cancer.
Bottom line for me was, okay, let's starve any potential cells out. SE's be damned. I just have to learn to deal with that for a while.
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Owly, my MO gave me the same explanation as these women have so generously shared. I am 6 weeks post op for BMX with DIEP Flap reconstruction. I completely understand your not wanting Rads or AI’s. I did my homework for both the aweful SE’s and for mild SE’s. I have never had to be on any kind of maintenance medication before so taking something like Anastrozole is new territory for me; but then this whole cancer journey is new territory. I am on day 5 of taking Anastrozole. I am working to change my attitude towards this little white pill that I take everyday now. I am trying to adopt an attitude of gratitude that this little pill will not only extend my life but may even save me from having to walk thru this treatment again.
I have several friends that had lumpectomies, rads, and took AI’s for up to a year to a year and a half and then chose to stop because the side effects altered their quality of life. My Oncotype DX came back at 14. That took chemo and rads off the table for me. So, I didn’t have any treatment that might have “zapped” any stray cells. So I need to starve any cells that might be floating around.
My MO encouraged me to try it. If it gets too bad then she said Ican stop and regroup.
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Owly, if you would press menu at the top of this page you will see a pull down menu. Select Settings and enter your diagnosis and treatments. It will help everyone address your questions knowing a little bit more information about your cancer.
Blessings
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Hello bella2013. I am just joining this thread and see you are from Jax. I'm in St. Augustine. Have you ever gone to the Mayo clinic for any part of your breast cancer treatment? I am going for a consultation/second opinion this month prior to starting my journey with anti-hormones. I just wondering if you had been.
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Just found this topic. I've been on anastrozole (generic Arimidex) since Nov 2014. Initially I developed very stiff knees and ankles after sitting for awhile. When I'd stand up and start walking I felt like I was 80 as I hobbled along, though my joints would loosen up after walking several yards. Also had trouble sleeping.
I followed people's suggestions to get more exercise, made a point of walking 2 miles on the treadmill every day and I have to say that over time that stiffness has gone away. The walking also helped my bone density, back and spine remained stable on my follow up dexascan. However, I forgot that I have bones in my arms and got lax about doing my weight lifting arm exercises and my wrist showed loss of bone. Oncologist wanted me to start Prolia injections, but agreed to wait if I promised to resume my arm weights. As for the insomnia, I've had the best luck using the free phone app Insight Timer. It allows you to choose how long a session you want (0-5", 5-10", etc). I choose 10" and select one of the guided sleep meditations and set my phone on the dresser and let it play while I go to sleep. I've noticed a marked improvement in the quality of my sleep.
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Puffin - excellent suggestions! Especially exercise..I harp on about it in the tamoxifen threads here on the boards. I’m due to switch to an AL in December so I’ve ramped up my exercise regime (I ‘lift heavy’as they say at the gym). After 3 years of steady strength training and cardio I feel better than I did in my 20s, and all the crippling liketamoxifen side effects are gone. I’m hoping this continues when I do switch to the AL.
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Doofuscat, I went thru Baptist (South)/MD Anderson. I could not be more pleased with the cancer team model they use. My nurse navigator was awesome. My treatment plan went very quickly time wise. My gynecologist found the lump in my left breast on November 17, I had a diagnostic mammogram and US on 11/22, a biopsy on 11/29 with a confirmed diagnosis on 12/4. All diagnostics and biopsies were performed at the Hill Breast Center which is part of Baptist/MD Anderson. I had a lumpectomy with SNB on 1/4/18. My nodes were clear but my margins had two places that were in question. I elected for several reasons to go with BMX with DIEP Flap reconstruction. I just started on Anastrozole this week. I am 6 weeks post op. I am very pleased with the result.
I am available to talk with you or meet with you. I live south of Jacksonville so you are not far away. When is your appointment at Mayo?
Thanks for reaching out😊
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Florida Ladies,
I had a second opinion at Florida Cancer Specialist. I did not think I could get an honest answer anywhere in North Alabama because my Oncologist is so well known and Alabama MDs typically will not counter another Alabama MD.
We went to Tampa since we had relatives there and made the trip a mini vacation. However, Florida Cancer Specialist are located throughout Florida.
I was very pleased with the second opinion. My DH said the team I saw in Florida put the MO Team that treated me to shame. I have since changed Oncologist.
Coach Vicky
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Coach Vicky, without getting into details, what did you like about them over your first MO?
How did the 2nd opinion help you?
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Hi Bella,
The MO and Nurse Practitioner (NP) had studied the documents that I sent.
They were both very teaching. I learned more about the Prolia injection with it having "some" protection against cancer returning ... a low percentage but still a percentage. I received confirmation that my chemo regiment was the best especially Carboplatin.
They were reassuring that the hysterectomy I had was the right decision. That was never supported by my MO because he said "your cancer will not return to those organs." My Gynecologist believed because of the pelvic pain I had before diagnosis the hysterectomy was necessary. The Florida Cancer MO and NP said they recommend that all their post menopausal breast cancer patients at least talk with a Gynecologist.
They appeared to care.
The second opinion helped because I now have confidence that I had done everything possible to stop my cancers from returning. I may have cancer again ... I don't know what my future holds. I do know that I have done everything I could not to have cancer return.
I will be happy to provide any details or answer any specific questions if I have not addressed you question fully.
Coach Vicky
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Coach Vicky, thank you for sharing your experience on obtaining a second opinion. I had not felt the need to seek out another opinion and don’t feel like I need to do so at this time. I feel like my MO listens to me and addresses my concerns. I just started Anastrozole this week so I will see how it goes if the SE are bad.
I see that you have been on hormonal therapy for a year. How are you doing?
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Bella2013
You are fortunate to have an MO that listens and addresses your concerns. I think my first MO is very smart and did everything right. Our relationship was always pleasant but I never felt we really clicked like I did with my other providers.
Like others in this forum, I do "well" for whatever "well" means. I have swelling and pain in my hands and feet. If I had not had so many surgeries when this cancer journey started, I would have three trigger fingers surgically fixed but I am tired of hospitals at this point. I can lose concentration easily and I work to stay sharp and focused.
I don't know if the Arimidex causes the swelling. I started swelling with Herceptin and have been on a diuretic since chemo.
I also don't know if Arimidex causes the fog I find myself in. I know I am different and my passion for work is not what it once was. I do have more fun and play days in life now!
My hair appears to be thinning. I used cold caps during chemo and never lost all my hair. My Dermatologist NP said my hair is not balding and once a person has chemo their hair never returns to exactly what it was prior to chemo. In many ways her statement helped me to stop comparing to what I once had and what I have now.
I walk and keep my weight down. I think exercise has been my friend throughout this journey. I am about 95% gluten free and I think that helps lower inflammation. I have more joint pain if I have gluten.
My glucose and cholesterol shot up when I first started Arimidex but those labs have stabilized. My HDL is up 32 points from last year and, again, I think my lifestyle changes have at least influence my labs.
I had a hard time when I started with the first two generics 4 April 2017 through about mid August 2017. The SEs were brutal. I am on the brand name now. Except for what I have mentioned and getting my head around taking it, I do well. My struggle is that I believe our bodies need estrogen. I struggle with is the cure causing other problems.
My Mammaprint result stated that I have a 94.6% chance of no recurrence if I finished chemo and 5 years of Arimidex. I have 3 years and 361 days remaining. 4 April was my first year anniversary.
I find reading in this forum really helps me focus on the positive. I am grateful for the reminders that a woman can do well with these drugs.
Coach Vicky
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Coach Vicky - Our AI anniversaries are one day apart - mine was 5 April. I take the AI manufactured by TEVA & have much the same SEs as you describe. Tolerable, so far. Have also gone as gluten free as possible & lost weight. Now, the exercise . . . not so easy. The fog does affect me & did not have it before AI. Agree with you about our bodies needing estrogen & struggling with the question is the cure causing other problems. In October, will have Dexascan to see how the bones are doing. Chemo was not in my treatment plan, so my heart goes out to all sisters who have also endured/are enduring this.
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celia, join us on the "log your daily exercise" thread if you would like encouragement!
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