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Life on aromasin

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Comments

  • Wildtulip
    Wildtulip Member Posts: 470
    edited July 2016

    Nammo, How did your oncology appointment go? Did you make a decision? I am not on Amridex, so I can't speak to that, which is why I didn't chime in before. I did have bad joint pain from one of my chemo meds and now I'm having some from another med I'm on, so I can relate to the frustration of constant pain. Sending healing thoughts your way!

  • cybermab
    cybermab Member Posts: 7
    edited July 2016

    Thanks zjrosenthal and warrior woman for responding!

    Maybe I should seek out a dermatologist for an opinion. I have always heard that trauma can cause hair loss, but with the change in AI from letrozole to Aromasin, who knows? Between the checkups for breast cancer and this injury and physical therapy, all I do is go to medical appointments.

    As far a bone loss, I have some thinning of the femoral neck, but that didn't break. What gave out initially was soft tissue when the femur dislocated. I hit the ground on my opposite side and the "loose" femur came up and broke the pelvis. As far as anyone has said, it was just terrible luck and a very slippery surface.SickTired

  • Wildtulip
    Wildtulip Member Posts: 470
    edited July 2016

    Cybermab, that injury sounds painful!! I'm sorry that happened to you. I know what you mean about constant appointments..when I was going through radiation, every day for 6 weeks, I was also going to chemo rehab (PT) a couple times a week and lymphedema PT. I have two children with special needs and often it seems we cannot go to a doctor appointment without being referred to another doctor, procedure, or something. It's gotten to the point where I'm more comfortable in a doctor's office then most anywhere else. Sad, but true!

  • Warrior_Woman
    Warrior_Woman Member Posts: 819
    edited July 2016

    Mamaseeta - I'm with Feeling Feline - I have no idea if my anxiety is from the trauma of cancer, treatment, stress from brain fog or I'm just nuts. I lived outside Philly for most of my life and now I'm across the river in NJ. I had treatment at Penn.

    lago - You make me laugh every time I log on. I appreciate your suggestion for Rogaine a few months back. My hair isn't growing back in but the falling out has settled down. I hope it doesn't pick up again.

    cybermab - I went to a dermatologist - 2 actually. They did a biopsy and blood work. I strongly suggest it for hair loss. They'll individualize your treatment and hopefully we never need wigs.

    I hope everyone is well. :

  • opt4life
    opt4life Member Posts: 111
    edited July 2016

    Hey ladies, I've has 5 days of aromasin and my first radiation treatment as oftoday. Definitely easier than chemo in my humble opinion. Feeling pretty good--at the gym on my fav elliptical and singing (in my head) to 80s music....'rocking the casbah'. Anyhoo, hope you all are doing well.

  • Wildtulip
    Wildtulip Member Posts: 470
    edited July 2016

    Hi ladies, on the topic of anxiety...I have been an emotional roller coaster since my diagnosis over a year ago. I'm talking an extreme roller coaster where it can vary from hour to hour, not day to day. I have good hours, and very low times too. I don't think the hormonal changes have helped...going from peri-menopausal to forced menopause in such a short time, but I don't know that it's drug SE's per say. And certainly the physical changes have played a role too. All of it..thrown together has made me a bit unstable. In the last week I've been feeling some joint pain, from Zometa I believe, so that hasn't helped my mood. I used to be so even keeled and now I don't even like being around me with my mood swings!

    Feeling Feline, a few days ago you posted that your (warm) temps were in the 20's. Right now in Minnesota we are under an extreme heat advisory. Today's temps were mid 90's (Fahrenheit) and tomorrow it's expected to be high 90's, but feeling over 100 with humidity. SO grateful for air conditioning!!

    Opt4Life, how many weeks are you doing radiation? Good for you with the workout! Yeah 80's music!!


  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited July 2016

    I finally gave in this week and realized I need help dealing with mood swings and anxiety. I got back to my support group and to counseling this week. it is true that for many of us the emotions hit big time after active treatment. My chemo doc confirmed this. Love, Jean

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited July 2016

    Wildtulip, Ireland hit 30 celsius on Tuesday, (that translates as 86 fahrenheit). This is exceptional here. Thankfully it has cooled a bit since SickTired

  • lago
    lago Member Posts: 11,653
    edited July 2016

    anxiety and depression can be from Exemestane. If you started to notice these SE soon or a few months after starting the drug then you know. Regardless of the cause you must get this treated.

  • Wildtulip
    Wildtulip Member Posts: 470
    edited July 2016

    Feeling feline, glad the temps are coming down for you! I prefer it cooler too.

    Zjrosenthal, I agree..The emotions hit big time after active treatment. For me, I needed to just get through treatment, and keep myself together for my kids.

    Lago, I didn't realize the SE could kick in months after starting meds, but that's good to know. I started seeing a therapist almost a year ago, and it helps tremendously. I don't have a man in my life and friends only want to hear so much. My therapist gets the brunt of my emotions, but that's what I pay her for! Seriously, it has been the best thing for me.

  • opt4life
    opt4life Member Posts: 111
    edited July 2016

    Hello ladies,

    Wildtulip, glad you have a therapist to talk to and share your pain. I'm all for therapy. I lost a child about 10 years ago and would have never made it without mental healthcare. I was lost, despondent, and couldn't find strength to do everyday tasks. Plus I had small kids that still depended on me. Therapy was the best thing I did for myself. And if your posts are any indication, therapy has been good for you too.

    BTW, I'm looking at 5 weeks of radiation--short bursts--whatever the heck that means. I like my RO but she is about to retire, so I won't finish with her. A bummer cause she is wonderful. Her replacement is male (still highly regarded) but I prefer female practitioners.

    I hope everyone is managing any SEs. I have a new workout schedule and not sure if that is the cause of my new joint pain or the aromasin.

    Enjoy the weekend everyone


  • april485
    april485 Member Posts: 1,983
    edited July 2016

    On the female practitioner preference, I just realized that not ONE of my doctors (except my orthopedic surgeon) is male! My GP is a woman as is my BS, MO and RO. Go lady docs!

    Edit, oops forgot to add that my GYN is also a woman!

    Girls - they rule the world!

    Winking

  • Wildtulip
    Wildtulip Member Posts: 470
    edited July 2016

    When I was searching for a plastic surgeon I interviewed one female and one male. Before I met them I thought I would end up going with the female for comfort reasons, but I liked the male SO much better, and I couldn't be happier with my choice. I do like having female doctors, but ultimately go with experience and a connection with the doctor.

    Opt4Life, I am so sorry about the loss of your child. I don't want to offer some cliche', so I'll simply send you virtual hugs. I'm not sure what is meant by short bursts of radiation, but I know I was in and out quickly. I hope your skin holds up okay! My unsolicited input on your workouts...I think it's fantastic that you are taking healthy action, but remember that your body is still going through a lot right now. Be kind to yourself. I hope you feel good this weekend!

    Hug

  • claireinaz
    claireinaz Member Posts: 714
    edited July 2016

    Thanks for making me laugh (wryly) about heat. "It's like Africa hot!" I haven't thought of that line from Biloxi Blues in years!



    Feelingfeline, husband and I visited Connemara and Inishmore two years ago and the sun shone nearly the whole time (10 days), temps in the mid-70s. One of the owners of a nearby pub we visited after a walk out and around to Omey Island and back told us that type of weather was highly unsual. And not in a good way.... :(

    But we sure loved our trip at any rate.

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited July 2016

    Opt4Life Heartloss of your child has to be the worst in life anyone can encounter. Thank God you had a good therapist who helped you manage your pain.

    Very best wishes with your radiation.

    Claire we stayed in Cleggan near Omey Island in 2010 it was a very good summer, prob the best weather we ever had consistently on any hol in Ireland. Connemara is so beautiful.

    image

    (The kids are a bit bigger now!)

  • claireinaz
    claireinaz Member Posts: 714
    edited July 2016

    Feelingfeline, hubby has cousins who live in Enniskillen and we've stayed with them before, and rowed boats in Lake Erne and explored Boa Island and that No. Ireland area on an earlier trip. Husband has deep roots in Galway county so that's why we stayed on the west side this latest trip. We had the perfect trip the second go round and we are saving $$ to return asap. I've even considered looking into a visiting professorship at Galway College to see if we could stay longer than just a few weeks. We both felt at home in Connemara and Clifden, our base. When I was there I never once thought about bc, that's how good it was! ;)

    Claire

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited July 2016

    Nerdy

  • opt4life
    opt4life Member Posts: 111
    edited July 2016

    Feelingfeline, thanks for the best wishes. So far so good with radiation. Its pretty quick and definitely easier than chemo for me even with the daily trips there before heading into work.

    Have a great weekend all

  • colleen1960
    colleen1960 Member Posts: 107
    edited July 2016

    My name is Colleen was diagnosed in 10/08..had surgery, chemo and was on tamoxifen from 4/09 till 7/14/16. My oncologist has decided that I needed to start taking Aromasin. I started taking the new drug on 7/15/16 while I have not noticed any major side effects (its only been 17 days) on Friday night I noticed that it felt like I had something stuck i the back of my throat. I was hoping it would disappear. And as it may have nothing to do with the Aromasin, but I was wondering if anyone else has had this issue. It is not listed in any of the side effects that I could find. It is very annoying and it it doesn't go away by tomorrow or Tuesday, I will call the doctor.

    Thanks for your help!

    Colleen

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited July 2016

    Hi Colleen I don't know of that being directly related to aromasin but I do have familiarity with a feeling like you swallowed an uncooked potato and it got stuck on the way down. Is that anything like what you are describing? Many drugs can give you reflux type issues and a swollen oesophagus can feel like this. I haven't had it often but on each occasion I found Gaviscon liquid was terrific for stopping whatever reflux was causing the swollen oesophagus and stopping that let the oesaphagus heal. Worked really fast. Not sure if you have Gaviscon in the US? It is a gentle antacid used to form a barrier stopping acid like reflux/heartburn. For sure you will have something like it in the US. It is an OTC item. Liquid is better than tablet. I would give that a go today and definitely check it out with the doc if you don't see an improvement. Best wishes.

    PS also think you spell it esophagus in the US Nerdy

  • bbbbun
    bbbbun Member Posts: 24
    edited August 2016

    Hi Colleen~ I planned to post a question concerning something similar happening to me when I saw your post this afternoon.

    I have been on Aromasin since 7/6 about two months. Now I too have something "stuck" in my throat....had swelling in my neck lymph nodes and the problem that is causing me fits is my sense of taste is all screwed up...for the last ten days nothing tastes normal and everything tastes bad!!

    I do have GERD and hiatal hernia treated by Pantoprozole (for 2 years)....wasn't sure if the proton pump inhibitor was the cause ..since there are concerns about taking it too long.....But my MO said to get off the aromasin and check back with her in two weeks.

    Of course I'm reading that loss of taste is an indicator or brain cancer....yikes! And worried about stomach and colon cancer because my stomach hurts as well...........I have really worked myself up into a tizzy......not like me :(

    Looking forward to hearing from you!!!!

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited August 2016

    bbbbun....please try to relax. We all, myself included get into some crazy thinking when symptoms occur. I truly believe you will be fine. Hope this helps. I will pray for your peace of mind and spirit. Love, Jean

  • Molly50
    Molly50 Member Posts: 3,008
    edited August 2016

    bbbbun, are you taking your aromasin with food? I get stomach aches and weird tastes if I don't take it with food.

  • bbbbun
    bbbbun Member Posts: 24
    edited August 2016

    Molly and Jean~ THANK YOU for replying!! I take the Aromasin at night before I go to bed so several hours after a meal.

    And I know I am freaking out! Seems the anxiety is also an SE of Aromasin. This taste thing is driving me crazy!!! Even water tastes yucky ....hard to imagine but its maddening to not enjoy ANYTHING I put in my mouth. I believe it is the Pantoprozole but I have a few more days off Aromasin to rule that out .

    I HOPE it is not the Aromasin because I was doing just fine on it for two months...and happy :D because I tried Aromedix and Tamox and both made me very depressed....( I lost my 37 year old son in 2014...four months before I was diagnosed with BC so I am still struggling with grief)

    Feel silly complaining with so many of us suffering with much tougher situations but thank goodness we have a place to vent!!!!!!!

    Love and hugs to both of you and our BC sisters! Valorie

  • zjrosenthal
    zjrosenthal Member Posts: 1,541
    edited August 2016

    Valorie, come complain as much as you need,to. My goodness, you have been through a lot. Thats what Weare here fir, to support each other. You will get through this. Love, Jean

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited August 2016

    Valorie - first of all, please accept my condolences on the loss of your son. I can't begin to imagine what you have been through and continue to live with. I'm so sorry.

    In regard to Aromasin - you MUST take it with food! I've only recently switched from Femara to Aromasin. Both the pharmacist at my pharmacy and the oncology pharmacist told me that no, I could NOT just take it with some V-8 or tea. It has to be food, and preferably food containing some (healthy) fat. Otherwise, its effectiveness is diminished. To quote: "Absorption of exemestane is 40-60% higher if taken after a "high fat breakfast". So V8 or tea would not be enough. You want as much absorbed as possible to "do its thing". If you are not a breakfast eater, then I'd suggest taking it after lunch instead. Not sure that "high fat" is necessary, but maybe a little healthy fat"

    So, you can see the importance of taking that little pill with food, whether you choose to do so after breakfast, lunch or (as I do) dinner. That's one major difference from Femara that I miss :)

    Good luck with your other issues, Valorie; I hope you find the cause and solve the problem soon!

  • Wildtulip
    Wildtulip Member Posts: 470
    edited August 2016

    Valorie, I'm sorry for the loss of your son. Hugs!! I did fine on Aromasin for the first few months, but then I started experiencing anxiety and joint pain. I don't know if these SE's are related to the aromasin or something else, but the anxiety has gotten better. I hope your SE's will improve with time.

    Hopeful, Thank you for sharing the info!! I had read that I should take aromasin with food, but nobody told me why, so I have been lax about it sometimes. It wasn't bothering my stomach and didn't know about the absorption factor. Thank you for sharing your knowledge!!

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited August 2016

    Wildtulip - you're welcome! I hope it helps. BTW - I know of one other person who did great on Aromasin but developed anxiety, so perhaps that is associated w/Aromasin. I'm glad yours has improved and hope the joint pain will, too.

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited August 2016

    I also was told to take with food. And to take at as near the same time every day as poss. I take it with breakfast.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited September 2016

    Hi, folks thought some may want to come and join the discussion. The mods did take action and change the title of the Attitude main board study (same study as April's link). The BCO medical Advisor is going to post a statement. The Mods have posted what that statement will look like. You can find it in their response.

    We have a dialogue going.

    I think the importance of this is that we can have an impact on discrediting this article not just here, but in the "domain"(world). This very irresponsible study, is out in the world now. It will be quoted forever by docs, church members, nurses, family, and friends. It's being used in all manner of publications going out to the public. It will be cited in many teaching pages and incorporated into other studies. It will be causing trouble for years.

    If you think it's an exaggeration. Think margarine. It was promulgated as a better alternative to butter by the American Heart Association in the 1970's. Then the problem of trans-fatty acids was identified. It was known in the research/ medical community to be a problem for years before it was corrected to the public. The research in the 70's wasn't solid, yet caused decades of problems. There are many more that I could cite, but don't want to belabor the point.

    So, join us :) Not sure how we will change the "domain", but it's a work in progress

    https://community.breastcancer.org/forum/73/topics/847566?page=1

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