I always try to be upbeat about my posts. Don't post often, but enjoy reading about the strength of all of you warriors. I was diagnosed in 2016 with a very small cancer in left breast. Had lumpectomy and 21 rounds of left breast radiation. Like so many, I thought I was done. I was told recurrence would be slim. Well, it raised it's ugly head in 2019. A few month after that, my daughter's breast cancer returned after 13 years and I lost her in July. I have a very bad attitude about the whole thing. I almost feel guilty that I'm still here and she's not. After my recurrence, I had a mastectomy followed with Ibrance and Arimidex. Took both of year and a half. I tolerated it ok, but never felt myself. Joints affected, foggy brain, hot flashes, hair thinning etc. After losing my daughter and being on this cocktail, I threw in the towel and stopped everything. I'm NED currently. Saw my oncologist and he said I'm just asking for it to come back if I don't do something. He wants me to try Letrozole. I feel better that I have in last two years. I don't want to go back to the way I felt. What should I do? How have most of you tolerated Letrozole? I'm 77 now and may only have a few healthy years left, but would like to feel good as long as I can. Hate taking all these drugs. Need your advice.
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Hi Mildred. So sorry about the loss of your daughter. I can’t imagine the pain you must be feeling. I think you pose a question that most of us struggle with. I’m 71 and think of the people that I know that have died younger than me. So 71 isn’t a bad age. I’ve been MBC since 2017 and I’m on arimidex with Xgeva shots every 3 months. Double mastectomy in 2008 with reconstruction. Wasn’t offered chemo and declined arimidex. Currently Tumor markers are slowly rising so Onc has talked to me about next treatment. Ct scan in December not showing progression yet but we’ve discussed Ibrance/Letrozole and Faslodex. We also talked chemo which currently I’m ruling out. My first year on Arimidex I felt like 90 but lately I seem to be tolerating the treatment better. Now I have 2 grandkids 13 and 10 and my son who is a pilot in the US military is a single Dad. I feel I need to be here for them all and my husband who just turned 79. Personally I’m not sure what avenue I’ll take next. Many people on this site have tolerated Ibrance and whatever it has been paired with so that decision faces me. I’m not sure anyone would be willing to advise you on your path but I know a few have told me that treatment is rarely changed until you see progression. Now after saying that. you’re taking nothing and your oncologist wants you on Letrozole which I thought had more side effects than Arimidex but it’s all unique to the individual. If you don’t want to take his advice maybe a second opinion would help. You also don’t mention if you’ve changed your diet or increased your exercise regime which all seems to help. I’m sorry if I haven’t been terribly helpful but I’m sure that your grief must be clouding your path forward. I’m sending you a big hug. Chris xx
So nice to hear from you. As I said, I have a bad attitude because of the loss of my daughter. I'm trying to be more positive about the treatment. Thank you for giving me your opinion and thoughts.
I am sorry for your added stress of your daughter’s cancer and death. I took Letrozole for 5 years after my primary breast cancer and other than hot flashes, didn’t feel any different than I had without medication. Adding Ibrance after my bone mets became apparent was the real added stress...exhaustion being the biggest problem. I would advice you to consider trying Letrozole on its own. You can always stop it if it gives you too many side effects but if it gives you more time with your family it would be well worth it. None of us are locked into the decisions we make on treatment, they can always be changed, but we often find that the changes aren’t as bad as we thought they would be. All of us on this board will support whatever decision you make. Elaine
Did you get the bone mets while taking Letrozole? I wish these medications came we a guarantee, but none do. I know everyone is different, but . . .
I was off Letrozole for three years after taking it for five years....told that I was at no risk for reoccurrence so I didn’t need to keep taking it. Whether it would have come back while I was on it, no one will ever know. I wish I had stayed on it now, but I was eager to take the least amount of medication possible.
Oh gosh, it is not surprising that you feel that you have a bad attitude. With all that you have been through how could you not? You are entitled to feel as you feel, being pissed off towards the world, cancer and its shitty treatments is normal and it is your right and this could even help you by boosting and galvanizing you. Just don’t torture yourself with the survivors guilt. That won’t help.
Follow your instincts Aunt Mildred. Do what you feel is right for you. You don’t have to feel dictated to by your oncologist.
Concerning Letrozole. I was in Femara (same) for 6 months or so. I hated it but I am younger than you and it affects us all differently. It gave me the sweats, major joint pain and stiffness and yeah, I felt 90 on it. I stopped, tooled Tamoxifen, which I was happy on , and got progression.
We are each different. Go with your gut. And yes, I agree, exercise and nutrition are very important.
I am so sorry that you are living with this pain. I do hope it eases up. You may feel a bit lighter the day you decide Letrozome or no Letrozole. Deciding and then doing often helps as we are then more in control, if you see what I mean? Not sure I explained that right.
I wish you luck and love.
This whole thing is like being on a roller coaster. I would just like to ignore it. Hope you're doing well. Yes you did explain it well.
It definitely is a rollercoaster!
I found letrazole very easy to tolerate. Give it a go, as it is pills, you an stop whenever you want.
No wonder you are feeling confused; you've been through so much. For what it's worth I was on Letrozole for 8 years following my initial bc diagnosis in 2010. I had no discernible side effects, not even the hot flushes or joint pain that others on here have described. I was moved on to Tamoxifen after 8 years because my oncologist said that research suggested that after a while our bodies get used to a particular drug and a change to a similar med would be good to "jolt" the body against any possible progression. Sadly, for me Tamoxifen did not work and I now have bone mets. I am now back on Letrozole. Everybody reacts differently to what is offered. Hopefully the various views offered here will help you make the decision that is right for you.
Makes me feel I should try it at least. When I read the reviews on line for Letrozole they were mostly written by women that had a terrible time with it. It's good to hear that it's possible to take it with minimal effects.
Take the minimum dose, like I do. 75 mg. I don't get any side effects. Plus, like somebody else said, if you don't like it, you can stop at any time. Just try!
Hi Aunt Mildred: So sorry you have lost your daughter and are dealing with Cancer. You will find great support here. It is time to listen to your oncologist. Usually they are right and have your best interests at heart. I say usually because occasionally you have a gut feeling that what they are suggesting is not right or you don't trust their judgement. That is the time to get a second opinion and/or get a new oncologist. I say that because I am in that situation of very often having to get a second opinion because of an inexperienced oncologist.
Don't be afraid of the meds you are being offered. They are the light weights and usually have minimal side effects that your body will adjust too.
By continuing to try new drugs, if that is what you choose, then you are helping future generations of cancer. And often they buy you several years of living.
Hope some of this helps to make you feel better. Lots of love and stay strong. By the way, I am 80 yrs. old in my 10th year with Cancer and happy to be here.
Cheers, June S.
Hi AuntMildred so sorry on the loss of your daughter! I'm 63 I started on Arimadex (2years) was switched to Letrozole 2years now . Both for the first 2 to 3 months seemed to make my joints stiff but that did subside and now I feel great! I am real active do a lot of walking and hiking and I have heard the more active you are the less side effects you get. That all being said I do feel each and everyone of us has the right to decide what we consider good quality of life. Since you are asking for advice I will say try the Letrozole if after a few months you feel crappy you can stop it. I just want to make sure that you don't judge your quality of life on the fact that you lost your daughter. I think your daughter would want you to continue to live . She wouldn't want to be the reason you give up on life!! Sending you a BIG VIRTUAL HUG 💛 Just remember what ever you decide we support you!!!
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.
Proverbs 3:5-6. Mildred these are the words of comfort and advice that comes to mind when I read your post. I know it’s a lot and we don’t have all the answers and the doctors don’t either, but we rely on and respect their training. Listen to your God, your heart and your doctor. ❤️❤️❤️❤️❤️❤️❤️
Thank you so much. That is one of my favorite versus. My daughter even told me before she passed "that God had another plan for her". When I decided to stop the medications I thought I would just put it in God's hands, but now the Dr. has me thinking about trying Letrozole. All of the advice on this board really helps.
Aunt Mildred - prayers for you not only for your loss but for what you should decide next. Listen to Phillipians4and6. He (God) will make the path clear. For me, I lost my first husband in 2009 to Leukemia and ended up raising my two children (10 and 12) at the time. It was difficult. I was diagnosed with Stage 2 breast cancer in 2019 and went through exactly what you did only to have it come roaring back in 2020 MBC. My focus is on my children, my God and yes I was initially on Lextrozole. Now I'm on iBrance and Faslodex. I don't ask God why - I ask him Why Not. In some odd way, I believe when your daughter said God had another plan for her, maybe part of that plan is you beat this thing on her behalf. Do not throw in the towel. I'm 56 and my children are now 23 and 21. In a joking way, I tease them that I'm not going anywhere ... too many years to give them grief. I never had a problem with Lextrozole. iBrance makes me tired but I'm on this planet today and my focus is being a light and inspiration to others. Perhaps that's my calling. Praise you girl and fight if not for anything, but for your daughter. Blessings
Such an inspiration. I knew that I would find my answer from the replies to my request for advice. Thank you.
I like You is on my second round with cancer, had both breast removed, so it came back in my lung in 2018..well to be honest I don't think it every left..my first bout with breast cancer was in 2010..I'm on Ibrance and letrozole, been since Sept 2018..at first I had problems with ibrance, because it was in capsule form, I was allergic to the gel cap..but with the pill form it is better. If you have problems, You can always contact Pfizer they, they are always helpful in answering your concerns.
My deepest sympathy for your terrible loss. I can’t imagine how gut wrenching this is.
I had a lot of fatigue when I started Ibrance. After 4 months we lowered the dosage from 125 mg to 100 mg. That made a big difference. I’ve been on that dosage plus anastrazole since 2018.
Since you say that your grief is understandably affecting your judgment, share that with your oncologist. That may help further a thoughtful discussion.
Is it possible that hearing an objective perspective helps you see another way?
Yes, you’re 77 which feels like a full life to you. Yet I expect you have other loved ones who need your presence. Find out how you can extend that with grace and better overall well-being if possible.
Whatever you choose, we are here for you.
I wish you peace and comfort.
What terrible times you are going through! I am so sorry for your loss. The cancer treatment needs to be comfortable for you and to suit you, not the doctor. I am taking Letrozole, solely although the oncologist recommended that I consider taking Ibrance as well. If Letrozole is your drug of choice, go for it!
it makes the heart sad to hear of the transition of your daughter. may you be at ease. quick synopsis of the JOurneY... initial dx Oct 2011; Tamoxifen and 35 sessions of radiation. the body did not tolerate Tamoxifen and was still behaving like a pre menopausal woman. by my choice, stopped Tamoxifen in Aug 2014. at a scheduled check in during July 2015, tumor markers were "extremely high," and the onc had them repeated. while awaiting the results, the MRI results, from the breast onc, confirmed the tumor markers indication. both the onc and breast onc were befuddled; in vague verbiage via the oncs, it was indicated that the metastasis had nothing to do with stopping Tamoxifen, and i believe that to be true. the results indicated mets to the right pleura and pleural effusion. at the end of July, VATS bronchoscopy, pleurodesis.... started Ibrance and Letrozole, and Lupron ( for chemical menopause) in Aug 2015. Letrozole was too much for the body and was switched to Anastrozole, as well as lowest dose of Ibrance. Nov 2015 PET/CT scans and tumor marker reports indicated drastic reduction in tumors and tumor markers. March 2016 scans indicated NEAD, and they have remained NEAD and stable; next tumor markers on 24 Feb and scans on 1 March. while i did not want to be on the mets treatment plan, i believe it, along with the integrative approach, to be the body's ally. there have been side effects, and i've learned how to manage them. it is a personal choice. may you make the choice that you believe is best for your mind-body and spirit.
My condolences on your daughter passing. You have been through so much. Your feelings are understandable.I was on Letrozole for 4 years after my initial dx.
Felt achy and stiff, but excercise helped.. I walked alot. It kept my recurrence at bay for almost 5 years til my mbc dx in June 2018.
Go with your gut in terms of deciding on Letrozole.
Love,
Marianne
You have had a really bad time, I am sorry and send you good wishes. I am on letrozole and Ibrance since last year when my cancer returned after 26 years. I am 71. I feel much better now than last year and am really positive. I am prepared to accept anything that might help to hold the cancer at bay. Having heard from some people on this site I'm not thinking about 'only a few years', now. but just living as well as I can until something/someone tells me I need to prepare otherwise. I take the attitude that I have been spared for a reason and should get on and live my life as fully as possible for those who have been less fortunate. Good luck. CarolynX
Aunt Mildred, I have been on Ibrance and Letrozole for the last 4 months. (Just started month 5 yesterday.) While everyone can be different with side effects, I am doing GREAT. I feel good, outside of some joint/bone/muscle pain... which is just my usual chronic pain amplified by my medications. Still, as I am used to this already (the daily chronic pain, which fluctuates in intensity), I consider myself pretty lucky in the side effects department. There are other things that Letrozole can affect, like cholesterol (in my case), etc. But in terms of how I FEEL? I feel good. And I feel grateful!
PS: This is my first bout with cancer, as I was diagnosed stage IV from the start. Bone mets.
Sister/warrior, and yesssss over-comer, my heart goes out to you on the loss of your daughter.But as a believer your daughter is celebrating with our FATHER/GOD wanting you to have joy in your life 
. I know you have other loved ones who want you here in the land of this living earth. Your daughter never gave up her faith. If what your daughter, you, and most importantly GOD wants then you will again have joy in your life. Listen for GOD he will give you discernment. I know your heart is still hurting, but go to quiet places in your home, and talk to GOD, and (listen) for the answer. I have lost 3 girlfriends to cancer . 1 in January 2020, 1 in February 2020, and another in October 2020. Even though I still miss them all I know they are present with our FATHER/GOD celebrating with no more pain or suffering, I know they are experiencing joy unspeakable just as your daughter is experiencing.. I continue to keep every funny voicemail, joyful video's, and pictures that keep me reminded of how special they all were/are. They all made me a better person, as I know your daughter did for you, and vice versus😇 GOD bless you sister/warrior, and yesssss over-comer XoXo
When I was younger, I never knew anyone with breast cancer. Now it seems so common?????? Thank you so much as we all have to work through this challenge.
Hi Mildred, I am so sorry to hear about everything you have been through and with losing your daughter. I can only imagine how hard that must be. I hope you have seeked some assistance in regards to mental health support. I have always found the social workers at the hospitals to be very helpful and supportive during tough times.I took Arimidex years ago and found it awful. I felt way older than I was and really suffered, plus I got to the point where I absolutely couldn't concentrate on anything. Letrozole was SO much better for me when I tried it a while later after a break. I'm very physical and I did not really have any troubles at all on it so I would give it a go. You can always stop again if it really bothers you! Plus you can probably safely take Tumeric (anti-inflammatory) while you're on it and for me I felt that helped take the edge off a little. Best taken at dinner time with a little fat and black pepper in your meal, for best absorption. Though you should always check with your doctor if that's ok for you to take.
Thank you so much. I've read each one of the replies and it has given me so much to think about. It helps to get a different perspective and I thought I could get that here.
Dear aunt Mildred...I’m so sorry for the loss of your daughter...you are seeing the world through this curtain of grief and that is directing your decisions. Please reach out for some counseling to help you make decisions that are truly best for you and for your surviving family. Emotional health is the key to treatment success and it seems you are ready to let things ride..but are you for sure? With this cancer progression is relentless and one needs to be willing to keep up the meds to keep progression in check. I can understand how you are feeling... guilt and grief are a powerful combination that have formed a wall around your ability to make clear decisions.
I’m on IBrance and anastrozole (generic) and am relatively comfortable. Quite frankly the anastrozole was the first med I took on day one of diagnosis and I never felt any side effects...though the list is impressive for younger women who are forced into early menopause. If your Onc recommends the hormonal therapy at this point, do consider it. At the very least it will prevent your body from fueling the cancer. Wouldn’t your daughter want you to do this to extend this period of NED...for those that love you?
Get through this dark winter...hugs.
Again as I have replied to others. These responses are more than helpful. Gives me many things to think about it. The main thing, it looks like I should give it another try.
No wonder you're having a tough time with this! Not only are you living with cancer, you are walking with grief, and grief does not keep regular hours or predictable responses. It comes roaring in or creeping in just when you don't expect it to do so. My heart and prayers are with you, and I am so sorry about your daughter. I am the second of three generations of breast cancer in my family (mother, me, oldest daughter, who was diagnosed at 29). So far, thanks be to God and knock on wood, I'm the only one for whom it has returned.
I started out with Taxol for three months and then took Letrozole and Ibrance for 15 months until the tumor markers started climbing. They added fulvestrant, but it didn't work fast enough. I am now back on systemic chemo (Abraxane) and having a good experience with it. My tumor markers have fallen significantly, and the PET Scan results support the results. Most of my bone mets (which were diffuse) are either sclerotic, gone, or show little activity. The liver mets are almost resolved. The cancerous fluid in my pleura and belly has resolved, and the omentum stranding is almost gone. We will continue Abraxane as long as I don't develop symptoms of neuropathy. I tell you all of this to say that not even systemic chemo is necessarily a bad thing.
Perhaps as you are able, get to know your cancer's habits and trust your gut to make decisions. If you don't feel comfortable with what your oncologist is telling you, don't hesitate to get a second opinion. I did, and it was a good decision for me because I have absolute trust in this current practice and in my oncologist.
Back to your question about Letrozole and Ibrance...
Letrozole was no problem for me. I never felt that Ibrance was the best drug for me, and sure enough I didn't have as long a run with it as others have had. How much my mindset played into that I don't know. My side effects were tolerable--some aches and fatigue and hot flashes. I also took Arimidex for five years after my initial round of BC in 2004. I had no trouble with that drug aside from some joint aches. If you start a treatment and it isn't working for you or causing too many side effects that impact your quality of life, you can always stop. Quality of life is SO important, and no one knows your body better than you do.
Do you do any complementary therapies? I have found some of these therapies to be helpful, and my oncologist supports them.
That you are NED is wonderful, and I can sure understand you not wanting to shake things up. Please keep us posted on how you are doing and what you decide. Peace.
So nice to read your reply and happy for the results you are getting. I just saw all the drugs and treatments that they gave my daughter and without detail, it was just so difficult. I was thinking I just couldn't do it and was just mad. All of you are such an inspiration, I feel I may try again and do what my oncologist suggests. God bless all of you.
I am so sorry that your daughter had such a poor experience with her treatments and that she ultimately lost her life thanks to the effects of MBC. I would have been furious, too, if my child didn't get the information she needed to make clear decisions about cancer. We never stop being mothers--no matter how fully grown our children may be. Sending you a digital hug in solidarity.
Thank you so much. I think the doctors did the best that they could. She saw many specialists and the outcome was the same. As a mother, I just really wanted to make it all better and with covit. in the mix, it made it even harder.
Letrozole was a non event for me. When I was 48 and first going through this and on letrozole, at that time the hot flashes drove me crazy. But at 71, seriously--nothing.
I cannot imagine losing one of my children before my time. I do not know how you do this. Knowing that we will all be together again is some help, BUT----a nightmare . I am so very sorry for you
I just read your note, and most of the replies, and I sure agree that losing your daughter to breast cancer while you are dealing with it yourself just has to add a painful layer to your thoughts and feelings. My own mother died from lung cancer about twenty years before I as diagnosed with this cancer, and I have often thought that I was glad she did not have to experience me, her only daughter, having this cancer, and of course then I think how glad i am that it is me and not my daughter......... I think I understand but losing a daughter to this cancer has got to be heart wrenching! I am sure she wouldn't want you to feel guilty, it's certainly not your fault ......
I've heard great things about the grief groups that hospice programs run. It might be helpful for you to check that out. Losing a child isn't something that we just get over and move on from! It changes our lives in all kinds of ways, some that are surprising. Some cancer centers have good social workers who see people about grief. Clergy and chaplains can be helpful, too!
Letrozole was my first med after I was diagnosed with denovo MBC, bone mets only, in March 2006. Hot flashes were the main side effect that I had, but how we do and how we feel on each med is very individual to us. Both my onc and my gynie, who discovered the cancer in my breast, are women and I have a hunch that that's been an advantage for me! The onc suggested I take Effexor for the hot flashes and it has been hugely helpful,. I take hte long acting variety of it and have taken 150 to 225 mg over the years. I got almost 5 years from it, back before the targeted meds like Ibrance.
I have made a point of learning all I can about MBC, attended several BC and MBC conferences. Letrozole (aka Femara) and Arimidex are very similar and most oncs prefer one or the other. But some of us tolerate one of those alot better than the other. They are both non-steroidal aromatase inhibitors and have been the first med many of have gotten to treat E + mbc. Exemestane (Aromasin) is a steroidal aromatase inhibitor and alot of us get it as the third med, after one of the two above and then Faslodex. I got over 9 years on Faslodex and now about 3 years on Exemestane.
I view this as a long term condition and have stopped getting upset over minor progression shown on scans or increases in TMs. I figure that if a med has worked for awhile, it's better for me to stop it a bit too late than too soon! I want to get as much time as I can out of each med.
I had some traumatic arthritis before cancer, and i think the med I take for it, Celebrex, has done alot to keep me form having bone pain. My list of meds keeps getting longer and longer! But I am alive and able to enjoy my family and pets and other stuff that isn't too tiring for me. Fatigue is biggie! But not worth pulling the plug on.
I hope that you can find peace of mind, at least some of the time, and a plan that feels right for you. We are here for you.....sending hugs and love, Pam
Thank you so much for your reply. As my faith is very strong, I'm dealing with the loss. Even Laura (my daughter) said "God has another plan for me". I've been under the care of City of Hope. Right now I'm in remission and it is my choice to stop all meds. I'm older and feel that for now, I have chosen quality over quantity of life. My daughter lived a year after her diagnosis for MBC, but it was a terrible year fighting it and Covid scare on top of it. We are all on our separate journey and I want to encourage all of you along the way whatever the choices might be.
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