Life on aromasin
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my back pain is too much. Herceptin ran out last May. I have been using Aromasin for 1 year. Side effects include back pain. I was in control last June and everything was fine. I am worried.
Age : 38
Surgery : 05/30/2017 low grade dcis lumpectomy
Hormon therapy: tamoksifen , not radiation
Age :39
Surgery : 02/14/2018 Mastectomy , IDC 5mm and DCIS 1,5 Cm . stage1a ,grade2 er/pr+ her2 positive node and margins are clear . Ki67 %30
Chemoterapy : 4AC + 4TAKSOL with herceptin
Hormon terapy : Aromasin
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Hi Capecod! I will occasionally 1/2 dose or not take until shoulder/back pain subsides. It works! When I go back on med, that particular pain rarely returns.
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thank you Murfy . hopefully this is a side effect. metastasis scares me. Is there any diagnosis of stage 1 and metastasis?
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Hi Everyone,
I'm doing okay on Anastrozole. I started on Exemestane but the cost was too high so my Dr. switched me. I did start out having back/spine pain which may have been from the Exemestane. Not sure. I've been on Anastrozole for maybe 9 months now? I take it most days, I occasionally forget. I take a lot of supplements to help counteract body/bone pain. I'm a flight attendant and 59 years old so some aches/pains may be a result of my age/job. Most day I feel good physically. I have really bad tightness in my chest from the mastectomy but nothing, not even constantly stretching, is helping with that issue!
Gaia brand Turmeric Supreme extra strength 1/day
Himalaya brand Joint Care herbal blend 2/day
Wobenzym N Joint Health 4/day
And a lot of other supplements such as calcium, tart cherry juice, probiotic, Vit. E, etc.
Most days I'm okay, some days simply suck and I cry a lot. I'm just trying to stay alive and healthy enough to see my teenaged daughter into her 20's, 30's. I don't talk about my breast cancer (2X) much in my everyday life as the more I talk about it the more I cry.
Janis
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aww, your post made me cry, Jaybird. You are really something strong to be still working, gone through this cancer party twice, and doing your best to take care of yourself with your daily supplements and all.
I have found a blog I love called Nancy’s Point that you may relate to. It helps with remembering that you and I are not alone, and isn’t cheerlead-y, if you know what I mean. And please know that we all cry at times when dealing with our cancer- whether it’s way behind us or not. It’s not forgotten. If we’re lucky we can often put it on a shelf, but it will always be a big part of our lives, and will come down from that shelf to deal with again from time to time.
I’m 65, exactly three years past my bc diagnosis. Stopped taking all AI’s 4 months ago.
Know that you’re not alone
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Pink, have you recently had or will you soon have a CT/bone scan? If your pain is from metastasis, it will show up on a scan. If you aren't scheduled for a scan, I would insist your MO order them to ease your mind. If the scans are clear, then you'll know the pain you're feeling is most likely a side effect from the Exemestane.
Janis, I feel for you and the pain you're experiencing. I was on Anastrozole first for seven months until I could no longer stand the joint pain it caused me and nothing seemed to help. I managed 17 mos. with Letrozole before switching to Exemestane. It is expensive, but after 19 mos. I'm doing the best on it. I don't know, but I wonder if there is a co-pay card with the drug company that manufactures Exemestance or if that kind of thing is only available for the brand name Aromasin? I need to investigate that for myself. Anyone else know?
Edited: I actually just checked into this and a savings card is available for Aromasin: https://www.aromasin.com/savings if in the U.S. whether you have insurance or not. I thought Exemestane was a generic of Aromasin, but in researching this, I now find that Aromasin Is Exemestane and not a generic I guess if manufactured by Pfizer. So, I'm guessing Exemestane is the chemical name of the brand Aromasin, but mine is manufactured by Cipla and is a generic. I think this copay card is only usable for brand name Aromasin. My generic is $396, so I can't imagine what Aromasin brand costs! I need to talk with my pharmacy about all this to better understand.
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Bliss58, it's weird how some do better on one A.I. than another. I do okay/good on Anastrozole. The Exemestane was a higher tier drug. I do mail order, 3 months at a time, and it's not expensive. Maybe $25? I've met my deductible ($3,500?) so all my meds are free until I start over again in 2020. :-/ My onc. wants me on this for 10 years (!) because I am BRCA2+, family history, my 2x BC, etc., so I need to be okay with taking an A.I. and so far my old bones are okay. Will need a bone density scan regularly I guess.
And thanks Luwusu. Had a melt-down this morning but I think I was just tired. When I think about BC killing me in the end I get over emotional. I do not plan on a 3rd BC dx nor do I plan on mets! Moving forward. Next step is more expander/implant surgeries. Fun stuff. lol.
BTW, my mom uses a Canadian mail order pharmacy from some of her meds.
J~
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Thanks for sharing your experiences Murfy. I have been taking the half pil for a few days now with no difference is side effects. I think I will take a complete break for a couple weeks and see where it takes me.
Bliss- I also take the Cipla brand and find it is the brand I tolerate the best. The extreme headaches I got on other brands are not so bad with this brand, so I ask for it with every refill.
Jay bird- hoping you have more good days than bad
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- I bought muscle relaxant medication and I'm more comfortable. Is there living bone metastasis a
t stage 1a?
0 - I bought muscle relaxant medication and I'm more comfortable. Is there living bone metastasis a
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- I bought muscle relaxant medication and I'm more comfortable. Is there living bone metastasis a
t stage 1a?
0 - I bought muscle relaxant medication and I'm more comfortable. Is there living bone metastasis a
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Pink, if you are dx Stage 1A then you don't have metastasis, but that's not to say you don't have a so far undetectable "living" metastasis site. My asymptomatic bone metastasis was found with a PET scan during initial dx, so I am Stage 4 de novo. Will you or have you had a PET? Glad to hear you're feeling better with the muscle relaxant.
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I have a Pet shoot in January last year. My most recent blood and USG tests were performed in June. I think the Aromasin I use makes bone pain. thank you lady.
Prayers for you . xxx
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make sure to have a bone density scan as well, these drugs can cause osteoporosis which can affect the bones. I have had to stop treatment because of this. All the best to each one struggling with side effects!
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thanks bennybear . I will check
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How are you doing with the Gaia turmeric? One other thing to mention about turmeric is that there are many challenges with absorption, and forms that are hydro-soluble absorb better.
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I've read the turmeric must also have black pepper to fully asorb. I've thought about trying Gaia brand. Is it a good one that works on pain?
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Turmeric may contain estrogen. so it may be inconvenient to use it continuously.
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Pinkpinkturk, I've read the opposite about turmeric. My onc is Indian so I'll ask him about it.
Bliss58, the Gaia brand is a liquid and it has black pepper. I'll assume it is water soluble.
I take a LOT of supplements. I don't get much sleep. I feel pretty good despite my hectic work schedule and my aches and pains are not really apparent unless I work too hard, pull too many weeds, or over exert myself physically. I wake up with no pain. I'm going to stay with my current course of supplements. As long as my tumor markers are low my onc is happy. I'll be on an AI for 9 more years.....
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Yes, turmeric that contains a black pepper extract does absorb better. However, forms that are hydro-soluble absorb even better than those with black pepper.
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Thanks for the additional info on turmeric, ladies. I've heard the opposite about turmeric being estrogenic, too. I checked on Memorial Sloan Kettering's integrative website (I look there often about herbs and supplements) and they say turmeric has a weak phytoestrogen component. I think the anti-inflammatory, anti-proliferation components outweigh the possible weak estrogenic effect and figure the AI is beating back any estrogen, right? Hugs to all.
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My oncologist said no to pills but yes to the spice.
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Huh, it's funny how all these oncs are different. Mine had never said no to turmeric supplements, but did tell me no to ginseng because it is estrogenic. My MIL sent me an energy compound that contained it and onc told me to not take it. My energy seems better since taking Aromisin over Letrozole.
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Turmeric/curcumin is not estrogenic. It is safe to take. I take the Gaia brand extra strength too. It really helps my joint and bone pain.
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Thanks, Molly50, for chiming in on the turmeric/curcumin. I think I'll give the Gaia a try.
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Hello all,
Sharing....I have been on Exemestane (made by West-Ward) since 11/2014. I have been pretty consistent taking it, off for about 1 week prior to surgeries. I take it with a baby aspirin 81 mg. I do have joint pains, but have found that movement in swimming or walking very helpful. I also have found that hydration helps me . When I don't drink my water, I ache more. I will be meeting with my ONC in December and am hoping to stay on it. I have had no bone loss. Any concern you have about consistent pain should be ruled out. Once it is, you may find arthritic changes to joints or old injuries are acting up. If you have no evidence of anything but just continue to ache, ask your ONC about taking 1 month off and see if your pain goes away. If it does you can try some of the other AI's or look into different manufacturers of the generic, or try the original but get a discount card from the manufacturer (lowers price).
Wishing an end to all pain,
Vivian
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I just wanted to pop in and say hi. I’ve been on anastrozole for about a year and tolerating it pretty well. I have struggled with fatigue, though. I’m going to try a month or two on Exemestane and see if I notice a difference. My MO also thinks if it’s not any better, at least I could tell my PCP that I’ve tried two different AIs and am still having issues. I know some women are using an ADD drug to help with fatigue.
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Vivian, I agree about water. I've noticed recently that I ache more if I haven't kept up with hydration. Seems hydration is key through all these BC treatments, at least it has been for me. Hugs all.
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Saw my oncologist today and he said turmeric/curcumin is just fine! My white blood cell count is down from my previous visit so not sure about that? Expect a full report on bloodwork next week. Will have a full ct scan later this year. He is OCD (his words) about being proactive. He's going to make up an excuse for the ct scan as they are not authorized unless mets is evident/expected. I guess it's a baseline more than anything else? I told him I have no issues on the Anastrozole. So 9 more years..... If it keep mets or recurrance at bay I'll do it.
Jaybird
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Hi ladies, I have developed constant dry mouth and scratchy, phlegmy throat since last November (thank goodness no coughing and swollen lymph nodes). All these symptoms are not getting worse or better. I went to ENT doctor last week to have gastroscopy the doctor said my throat looked swollen and looked like it is from allergy. Can this be one of the side effects from my hormonal treatment (2.5 years of Lupron and Aromasin)? I saw somewhere online that Aromasin can cause sore throat. Thank you for all your input!!
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i hate aromasin but....lol! the joint and muscle pain are horriible and i feel like i am always tired! i run 3 miles a day and eat healthy and still feel like i have to fight weight gain. 😭 you???
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