FEMARA
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Thanks gkbuser. My back pain is intermittent. MO said that after going through a lot body will take time to recover. I took my 4th lupron shot y'day. Couple of days prior to that, my lower back was hurting, the way sometimes it used to hurt during period. As it just been 7 weeks since surgery, MO suggested to take regular pain killers as needed. Mostly I get tired by eve and then sometimes backpain starts. Going to watch it for couple of months.
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I get a massage regularly. I know others have been helped by acupuncture. Some insurances will cover both. Walk as much as you can. If you can't manage the SE's from one drug, ask to be switched to another. Also keep track of the manufacture of your AI's. It does make a difference for some folks. Even though my hair is definitely thinning, I am happier with femora than I was on arimedix. Others feel the opposite.
I had a total hysterectomy when I was 35 - no cancer then just polycystic ovaries. It was a relief.
I try to think of my cancer as a chronic disease that I can keep under control if I follow some "rules." Or as my funny MO said "AI's are your friend."
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I decided not to take any hormone therapy. I just had a recurrence after 15 1/2 years after having a tiny invasive ductal carcinoma. This time it was a tiny invasive lobular carcinoma which by the way was not seen on my mammogram but because I had pain was given an ultrasound which saw an area of suspicion. I see no reason why I wouldn't catch any future recurrences early. I work and I am 66 and I am on my feet all day. I need to work, I don't have the luxury to sit down if I get pain or discomfort. I made my choices for me, I am not advocating not taking an AI. In the end, I am the one who must be comfortable with my choice and live with whatever consequences happen. I feel I am a breast cancer treatment survivor. I never feared my cancer, but I had horrible experiences with treatments due to how my body reacts. I have had and continue to have great doctors, and I listen to their advice, but ultimately I make the decisions for treatment.
I wonder how many other women have made a similar choice?
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maverksmom , what choice did you make on this recurrence
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I thought I answered this, but maybe not. The second time around I opted for a mastectomy (really the only choice with a recurrence in the same breast, especially since radiation was used the first time on that breast). I was talked into reconstruction (DIEP) which I am having a lot of problems with, but too late to turn back now. I totally regret following the doctors advice, both the breast surgeon and the plastic surgeon, and allowed them to talk me into having that done. In hindsight I would have kept my original decision of no reconstruction. Had I done that I would be at work now instead of at home typing this.
I do want to say I am completely happy with my decision to opt out of follow up treatment with an aromatase inhibitor. My medical oncologist doesn't know me, I only met her once. I listened to what she said, went home and for weeks I reviewed the information she gave me. I also researched AI's, the side effects, the studies and their results. Then I applied all of that to my life, my values, and my order of what is important in life. Then I made my decision.
No one should expect any doctor to know who they are based on one or a couple of visits. To the doctor you are a breast cancer patient. To you, you are a person with a life, who has/had breast cancer.The world is full, too full in fact, of women (and men) with breast cancer. My doctor has a revolving door of patients. To her I am only one, and a pretty insignificant one at that. Cancer comes with difficult decisions, but ultimately the person with the cancer must decide what is best for themselves. Sometimes that means going along with the doctor's advice 100%, sometimes going along with some of the doctor's advice, and sometimes it means not following any of their advice. That is what makes it a choice!
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Hi everyone...another who chose to only have surgery. QOL was the most important aspect for me. I'm 4 years NED. So far so good!
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Hi (again) Mavericksmom, I’m pretty sure there is a topic for folks that have opted out of AIs - maybe you can find it? I do understand why some ppl decide not to take AIs (let’s face it, they are not fun) especially if the statistical benefit is a very low percentage. For my friend, it was only a 3% difference in outcome - which I think is about what lumpectomy vs mastectomy is. The pain etc was not worth it for her. For me it is, but some days it is a struggle.
Lanne
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Wanted to mention to the group two things:
1 If you do a general search on this site on “ASCO" the acronym for American Society of Clinical Oncology, you will find a lot of info ASCO has put out about many topics we've talked about on this board - protocols, vitamins, etc. Also,
2. The ASCO's website Cancer.net has worksheets and info on what a survivor's written history and future “post-treatment" treatment plan should look like and info on the level of post-treatment care we should be receiving. Our MOs (who likely all belong to ASCO) should all be using these! I'm taking a copy in to my next appt and asking my team to fill one out. It sounds like a lot of after care falls to our “regular" doctors - there's info that would benefit them as well.
LET'S BE GOOD ADVOCATES FOR OUR HEALTH!!
Rock on Ladies,
Lanne
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Lanne, thank you for your post! Great information share!
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Hello!
Would like to ask those who took femara 10 years and stoped. Do you feel that your sipmtoms improved such as a dryiness and etc.
TIA
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Hi there, has anyone had to start taking a statin after being on femara because of high cholesterol? If so, do you notice more aches and pains. My PCP wants me to start taking Crestor(5mg) after a heart scan I had showed about 50% blockage in only one artery. My cholesterol numbers are also a little high but not extreme for my age (78). I’ve never had a problem before this. Is femara the cause?
Thanks for any information you can give me.
Faith (in the future).
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Faith I have been on femara for 15 months now. Back in December I had my cholesterol checked and it had gone up 40 points. Not happy about that at all. I have always had low cholesterol my entire life. I definitely blame femara. My hair has thinned tremendously as well. I see my MO in June and we will talk. I'm afraid I'm going to be bald and ready to have a heart attack when this is all said and done. 😡
Nancy
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Nancy, thanks for your reply. I have heard that femara raises cholesterol so now I wonder if it would go back down if we stop femara. That’s not really an option for me but maybe changing to a different AI might do the trick. Or, maybe they all do the same thing. I’m so tired of all these side effects. Take a pill for something and another pill to counteract the results of the first pill. It’s enough to make you scream. While I’m grateful that there’s something keeping my cancer at bay, I’m just very frustrated trying to stay healthy.
Sorry for the rant!
Faith
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Yes I agree Faith. I was driving home and was thinking how much I'd like to stop femara. I won't, but I am going to talk to my MO about these side effects. Unfortunately I think all of the AI's have these side effects. I was just getting my hair done and it's just so thin it's ridiculous. I know that's vain, but that's me and my hair has always been important to me. I'm just venting because I'm sick of these side effects too.
Nancy
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I'm closing in on one year on Femara (generic, actually: Letrozole). No perceivable side effects (ie, no joint pain or anything else). However, I am acutely aware of the fact that the Letrozole might worsen my osteoporosis - my MO boosted my daily calcium & Vitamin D plus put me on twice yearly Prolia shots. Fingers crossed - my next DEXA-scan is in June. I am also aware of the fact that Letrozole is known to raise cholesterol and A1C. Since I have long dealt with high LDL through exercise and diet and I've kind of held it steady (high but steady) and because I've dealt with the A1C the same way, I am hoping to counteract that detrimental effect of the Letrozole, balancing it out as it were.
As it happens, 2 years ago (before my cancer diagnosis) when I was first diagnosed pre-diabetic (a diagnosis which is controversial as treating it with drugs may be more to the benefit to drug companies than the patient), I radically overhauled my eating and boosted my exercise routine (both already good). Last year with the cancer diagnosis, I doubled down and now am 95% vegan - or kind of a hard-core vegetarian, consuming very little oil and very very little in the way of animal products.
I just got my annual labs back from my annual exam with my primary care physician. While in someone NOT on Letrozole, I would guess that the LDL and the A1C numbers would have improved in a year's time being mostly vegan, in my case they've once again held steady - the A1C exactly the same as last year and the LDL a smidge higher.
I'm going to consider this a win - and a reason to continue in my Whole Foods Plant Based way of eating and my work-out-doing-SOMETHING-DAILY activity routine. To me, if I can hold this level in spite of the Letrozole I'm doing okay. Hoping that the Prolia and the increased calcium & D (and my deliberately reduced caffeine intake too - caffeine depletes calcium) will help me hold or improve my bone situation.
To me, the trade off is worth it if the Letrozole does what it's supposed to be doing and if I can avoid a recurrence of cancer. It's my only hope, honestly, and I'm not willing to give it up. I've got 4+ to 9+ years left on the stuff so learning to manage everything else is what I need to do. Anyway, I thought I"d weigh in with my two cents' worth for what it's worth.
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Another thought, after reading posts by others: I recall my MO telling me that all the AI's carry pretty much the same risks and possible side effects. So I'm sticking with the Letrozole.
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All I can say at this point is I'm tired. I should be so very thankful that my cancer was small and I am but I'm just tired. Idk if it's the femara or just the state of where I am in recovery. I'm depressed and sad. I feel like my husband is sick of hearing about it..don't blame him ..I'm tired of feeling it. I've always had achy joints but now I wake up at least 4 or 5 times a night with my shoulders and right arm hurting so bad I put off turning over even though I know it will help. Not to mention waiting to go pee! The last several nights my hands are hurting the same. I've started walking more and it's worse. Throw in a couple hot flashes that also wake me up. Not much sleeping going on! My hair is thinning. I'm gaining weight even though I'm walking more. I see why some people choose to stop the medicine. I don't know if it's worth it.
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Cjzach, I could have written your post in 2012-2014. It's hard and doesn't let up for many. I chose to stop femara two years in because I was exhausted from side effects even with prescribed sleeping aids and antidepressants. I felt like I was 80 at 64 and was reminded I had cancer lurking inside my weary body. Because of life altering circumstances and a move to a new state I stopped femara and my quarterly oncologist visits.
In 2017 I began to present back pain and doctors chased the symptoms even to physical therapy which lead to orthopedic doctors and a diagnosis of metastatic BC to bone and lungs. I was immediately put back onto Femara.
Now, after a year of targeted therapy- kisqal- monthly zometo infusions and ten rounds of radiation twice on different areas of my back I'm stable and off the targeted therapy for 4 months. Femara has been my only defense against this insidious disease.
I tell you this to look at the long haul. I didn't understand in 2012 how AIs acted or maybe I just don't remember. It's no ones fault but cancer. Now I think I wouldn't have stopped especially if I'm able to go a year without the harder therapy, but that's in the past and I have to creep forward.
Don't be afraid to ask all your doctors for help and don't give up on yourself in the ability to find a way to overcome the obstacles the little pill tosses your way. Wishing you the best and slices of good days in your journey to health and life. Jo
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Thank you JoE777 for posting. My diagnosis was similar to your's. You have convinced me to stay on femara as I've thought about stopping many times.
Nancy
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Cjzach - I had similar results on Arimidex (Anastrozole). I could barely walk after sitting still for a short period of time. Long car rides were torture. Everything ached. After trying to adjust for about a year I finally talked to my onc. She suggested switching AIs. I stopped Arimidex and tried Letrozole. I feel so much better on Letrozole. While I still have some aches and pains, they do not interfere with work or my daily activities. I just drove 6 hrs to visit my new grandbaby and had no trouble. Sleeping is better and I feel better emotionally. Maybe you should try a different AI.
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Cjzach10 - of course you are tired. Many of us experience PTSD with diagnosis or during treatment! You have been through a lot in less than a year. Talk to your MO. While all AI's may do the same thing, my experience is that which one I'm on does make a difference for me. Some even report that the generic they get makes a difference. I did arimidex for about 5 months before switching to femora. My mood swings - especially my anger and "bitchiness" smoothed out and joints seemed to work a little better. I switched because I started getting all day headaches. Just recently they started again so I'm taking a "little break." I fully expect to resume shortly with a "reset." See MO tomorrow to see what's a reasonable time off. She was fine with my waiting a few weeks last time. My Mo was also able to give me something for my hot flashes (who would have expected that at age 72!)
Consider finding a cancer support group near you, especially if you find hubby pulling away. This is scary for him too. Don't be ashamed to ask for some professional help or medical assistance for your depression/anxiety and your pain. I was very public about my diagnosis and found fantastic support from friends but I'm over 70 and I understand that decision may be harder for women younger than I am. I was absolutely amazed at how many told me they belonged to the club too. Some who had been cancer free for 20-30 years!
I hope you have a MO who is as responsive as mine is to my concerns and questions. She never minimized them. In fact, sometimes ordered tests sooner than I expected, i.e., a brain scan when I mentioned the headaches. Know that this is a safe place to be sad and overwhelmed. I doubt that there is a single person who posts here who hadn't has those feelings.
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Thank you all for your replies. It always helps to hear from someone that truly understands. I see my MO next week. I don't love her at this point but I'm giving her one more chance. I've messaged twice about having imaging done on my lymph nodes and haven't heard anything from her. I had unsuccessful lymph node mapping so I need to be on some kind of AI. I'm going to talk to her about all of this.
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I'm totally exhausted and don't know if it is the Letrozole. I'm only on my 3rd month. I slept almost 9 hours last night and was up about 5 and couldn't keep my eyes open and had to have a nap. Slept about 30 minutes and probably would have gone longer if the phone hadn't rang. Achy hips and joints, but with exercise no real stiffness. This is my week that I usually have the most energy and I absolutely don't (another herceptin on Monday). I have an echo on the 18th and blood work/MO consult on the 24th - hoping maybe it will tell something. Otherwise, it's probably the Letrozole and I sure hope this gets better and not worse. I know how badly I need to be on it and understand regrets, but it is hard when you are in the middle. I did 5 years of Tamoxifen the first time around and I had a lot of problems, but I stayed on it and at least didn't have to wonder if it would have made a difference.
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I started arimadex tonight. My oncologist thinks it's worth a try to see if it helps my joint and muscle pain. I ache all over now just concentrated in my shoulders arms hands and feet. I probably have some arthritis adding to the fire. I'm torn about switching but I'll comply for now. I still cant imagine 5 years of this crap! I've increased my walking and there is a definite connection. More than 3 miles at this point makes my legs and feet sore..but I'm not stopping!
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Lanne, Thanks for the information.
I apologize for deleting my posts. I agonized over taking Letrozole. I became comfortable with my decision not to take an AI, but worried that someone else would decide to do the same because of my posts.
Circumstances change. I didn't think my MO cared that I was refusing the AI. I thought I did all the research I needed. I took ownership for my choice, prepared to accept the blame if it turned out to be wrong.
Then out of the blue, my MO called yesterday, “just to talk." Long story short, she talked me into at least trying the Letrozole. A few hours later my older sister called to tell me her biopsy showed she has IDC.
I am not positive for BRCA genes, but breast cancer definitely runs in my family. I was the youngest and first to be diagnosed , followed by my mother, oldest sister (who had both IDC and lymphoma at the same time), then came my recurrence and now my second oldest sister!
I feel mentally numb. Even though I am taking the Letrozole I am scared to death. Now I worry for my sister, and for my other sister who still doesn't know about our sisters biopsy. I am waiting for my older sister to tell her. I can't imagine how my sister without cancer will take it.
I'm not sure what is worse, the physical pain of breast cancer or the mental one. You all know what I am talking about.
(((Hugs to all here!))
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Mavericksmom, I know how frustrating it is to see family members get cancer. My heart goes out to all of you. My mom and both her sisters had BC and recurrences. My mom passed from metastatic cancer in my early 20s. All my geneticist could tell me was that there was no genetic link they could identify. My cousins and I all keep each other updated. Neither I nor one aunt who was tested have BRCA. But at some point - it's not rocket science to identify a familial pattern.
All this info went into my decision to go against all my Drs' (BS, PS and RO) recommendations for a lumpectomy. It was one and done for me on chemo, BMX, and rads (I hope). I hate that Letrozole makes me hurt, tired and grumpy. I hate that my chest still feels sensitive and that I have more surgeries ahead for recon, and that it's so f'n expensive. That my brain and new anxieties won't support me going back to a well paid career right when I've got 2 kids ready for college, that my cancer affected their choices.
But, life is what it is. We're women and we're strong as hell. So it is still one day at a time. Ultimately, I'm glad I'm here to complain about it and I think everyone around me is too. ☺️
One breath, one step, one day at a time . We can do this
Lanne
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Maverick - how scary for your whole family. Thinking of you. Time/events often changes our perspectives. It's OK to change your mind about treatment - one way or the other.
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GrandmaV, I agree, Lanne2389, that was beautiful! I too thank you! Taco1946, thank you for your comment as well! I don't know what I would do without all of you!
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My MO wants me to switch from anastrozole to femora.
Does anyone have the experience of one generic giving them less side effects than the other? Is there a brand name program like Eagle Brand Pharmacy has for Arimidex where you can obtain the brand at a sharply reduced race? Any input from your experience is greatly appreciated ladies!!
I've been reading through your comments and seems like everyone is complaining of hair loss on Femara.Seems like even worse than Arimidex, although certainly I'm just quantifying that from scanning through the complaints here.
Again I would appreciate your input ... wishing everyone a peaceful weekend!
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