I am on Day Five of faslodex/ibrance. It hasn’t been terribly bad, except I have found myself tiring easily, and today some bone and joint pain started to set in. But my problem is my husband. He is making me feel like I’m a disappointment to him or something. I took a nap yesterday and when I woke up I asked him if he would carry the laundry down to the basement, and he made a comment that I must really be getting old. I reminded him that I have cancer and just started new treatment, and that made him more angry. He has pretty much isolated himself, and acted like a little storm cloud whenever I’ve seen him, and hasn’t talked to me since then.
I think he is having a hard time dealing with the “foreverness” of this. During my first chemo, he was great. When I was diagnosed again, he said we beat this before and we will beat it again. But then he learned that I would have to be on medication for the rest of my life, and I made the mistake of sharing that my oncologist said she expected to see me here in ten years and could easily see me for some time after that. Of course, I understood that as good news. I was worried about, like, dying within a year! But I think for him, he was thinking we would treat it and cure it, and facing the prospect that we won’t grow (as) old together, that he could be left alone in his sixties, and also that if I am feeling tired and having bone pain now, it won’t end, that nothing will ever get any better, that it will only get worse...
I actually know two people whose partners left them toward the end of their cancer journeys. I know it’s hard on the families. But I don’t need to be made to feel like a disappointment because I have cancer. And yet that’s how I feel.
I know you can’t have an answer to that. But I know so many of you are active and live full lives. Does the fatigue and bone pain go away? Is there anything that can help it? Or do you just power through it?
That’s a lot for you to handle. I’m sorry. Please know that you are not whining. Even if you are, this is the place to do that.
Sounds like your husband needs to see someone to talk about his stress. If not, perhaps you can find your own sounding board. I encouraged my husband to talk to a therapist. am great ful he did. Only 2-3 times but it allowed him to freely vent. Not his usual thing but he tried it.
If he won’t consider that, my husband suggests he speak with his regular doctor first. He says your husband might find that an easier first step. After that, your husband and his doctor could discuss next steps like therapy or an anti anxiety medicine
None of this is easy. It would be wonderful if all our loved ones could find the necessary compassion. It is not our job to lift others up when we are dealing with so much.
Please know we are here for you
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Thank you. I have my 26 year old daughter here, who is a great support. We just moved to Iowa from California five months ago. My husband never went to the doctor even in California, but I will suggest he go.
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FWIW my husband is not necessarily big into therapy. It took a little chat and time afterward to think about it. I told him it would help me too which seemed to motivate him. Please keep me posted
I was advised many years ago by agood friend and therapist that 99per cent of men dont want to go to therapy
She felt only to get them there is to say it's for you , finished. My doctor says I should go to a therapist but not only ,that you should come with me.
Did you read men are from Mars women are from Venus..
.it's got a lot of good tips...says women and men speak two different languages
For example most women will confide feelings in friends,they'll talk sports or stock market. Of course they're exceptions
Hello. Whine all you want. That’s what we are here for😊 I’m sorry your husband is acting this way. Although I know that people handle things differently, I feel sad at the way he treats you. Maybe he just needs to process the news and is lashing at you in the process. Give it a few days or weeks and see if his attitude changes. You don’t need added stress at this time. What you need is rest and some TLC. Take care!
Hi,
You have every reason to vent about what you are going through. This is hard for families to handle, but harder for us (in my view) as we are actually experiencing this disease personally. It sounds like your husband is angry at the disease, but it is coming across as anger towards you. He can’t make it go away, and I think that can be frustrating for husbands who want to “fix” our problems.
I would suggest encouraging your husband to talk to someone, even if it’s just a friend. My husband enjoys playing golf, so I encourage him to go out every Sunday, sometimes more. If yours has a hobby, it might distract him and give you both a bit of a breather. But don’t stop asking him for help. You need the physical and emotional support.
As regards the bone pain, are you taking vitamin D and/or a bisphosphonate such as zometa or xgeva? Bone strengthening exercises can also help.
Take care,
Sophie
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I am taking vitamin D, and calcium/magnesium. I had one prolia injection last year, but that caused terrible bone pain. I have not heard of zometa or xgeva. I am early days with this diagnosis and my actual oncologist has been on maternity leave since we received the biopsy results. We will see what she says when she comes back.
Hi there, so sorry re your husband. I too think he needs to see a dr or therapist. Very worried you are not on Denosumab. One of my three mets is Bones and Denosumab has been great it For them. Hugs and blessings .
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Hi,
Is there a stand in oncologist you can see until yours returns from maternity leave? I would not be happy with not having an oncologist to see, even if it's not my usual one. Zometa is a bone strengthening infusion and xgeva is an injection, again aimed at supporting bone health. You mentioned that you have had a prolia injection. That's another name for xgeva. It's also known as denosumab. As that didn't suit you, perhaps zometa would be better. I would make some enquiries and see what you can find out.
I feel just like you....my husband is very selfish and just goes off most days doing various activities with his chums...running cycling he plays golf at least twice a week does pilates and lifts weights...he’s obsessed with himself ...we’ve both always been active but now I can’t do long walks and feel tired and always in pain.... I hardly complain but I feel as if I’ve been ‘written off’...his fitness obsession has got worse since my diagnosis and it makes me feel useless and inadequate as if I’m if no use or company to him....like I’m just a dying person who’ll be out of the way sometime
I do have my horses thank goodness so I go to the stables most days to see them...I ride Bugsy when I feel ok and if the pain isn’t too bad...I know this can’t last forever and I’ll have to stop at some point and the thought of that is unbearable...I do yoga as well and short walks
Anyway I’ll stop moaning about me and my situation as you’ve asked for advice
I think you should tell him how you feel...it probably won’t make much difference but might make you feel better but you don’t deserve to be treated or spoken to in that way.... I know ladies on here have suggested he tries therapy but it’s not for everyone...I think my husband would just laugh at me if I dared suggest that
I do have two daughters but Miranda lives in London so I hardly see her especially with the Covid restrictions....Vanessa is very supportive and lives not far away...we ride out sometimes and have friends in common but I hate to burden her...she knows the cancer has recently progressed again and she worries about me....I feel as if I’m a disappointment to the whole family and have spoilt their lives
So you see I do understand how you feel but I’m no help to you as I can’t sort my own life out
If I thought I had 10 years ahead of me I’d leave my husband not the other way round....however I’m now not in a position to do that
My husband is usually home. We are in a new place, and we have been socially distancing, but he has had a man cave for years where he likes to hole up. We have a busy house. My 26 year old daughter, her four year old son, three dogs. My son and his wife and their two year old daughter live downstairs, but come up sometimes. He has been involved in activities over the years, golf, archery, RC cars. The only
Thing we ever did together was cycling, and honestly that was the best time in our marriage.
Maybe your husband is delving more into fitness because he is afraid of getting sick himself? I don’t know. I don’t understand people. I’m a natural nurturer and it’s hard to relate to people who aren’t. As I stated in my original post, I do know two people whose partners left them in the later days of a cancer battle, and I don’t get that at all. I’ve known a lot of people who have died from cancer, but one in particular I was really close to, and i felt it was a privilege to walk with her through that journey, and I have heard others say the same.
When I had cancer the first time, my husband said he would give his life to spare me from the cancer and treatments. He went with me to all chemo treatments until I told him the treatments made me sleepy and I’d really like to nap during them. His dad committed suicide when he was five, though, and he has some pretty sturdy barriers erected against loss.
I am really sorry you are going through this, with your husband and with your health. If ever there is anything I can do, let me know. You are not a disappointment. You are a gift. You have wisdom here to impart to your family. Ever since my first bout with cancer, I have thought, I taught my children how to live, and one day I will teach them how to die, so one day when they approach that place themselves, they won’t be afraid. They will say, I know this place. I came here once with my mother.
When I was first diagnosed with MBC I was in so much pain that I couldn’t bend to put my underwear on. I had a blast of radiation to a broken vertebrae and once I got settled on ibrance and faslodex the pain reduced. I was completely back to myself within 12 months. I know that’s not the same for everyone but it is possible.
My husband once accused me of making too much fuss about having IV chemo because I couldn’t eat due to the nausea. I can’t tell him anything about my treatment or how I’m feeling because I might as well put it in the parish magazine.
Make sure you get the support you need if it’s not coming from your husband. I see a counsellor every month not because I feel I have issues, it’s more a preventative measure.
You’ve had a horrible time, you need to grieve for the life you had and the roller coaster you’ve just boarded. Life will never be the same but that doesn’t mean that things will be worse. And you will find an even Keel again.
Wow, I’m so sorry. My husband was really good with the IV chemo. Maybe it’s because it is a pill? Or maybe it’s just the forever thing. I’m glad the ibrance and faslodex helped. I’m hoping for better days.
Everyone is different regarding the pain. I had two weeks where it was unbearable. First on one side of my back, then it switched to the other. Could barely get out of bed and had to sit in a chair most of the time. Then like a miracle it went away. Doc couldn't explain it, but I think it was inflammation that was pressing on the nerves. Most of us complain that pain comes and goes. I have been pain free for several months now. The fatigue is something you might just have to learn to live with. I have slowed down in half.
The joint and bone pain? I find it comes and goes. I took Tylenol arthritis and it helped. The tiredness is kind of relentless though. It hits every afternoon, just in time to not want to make dinner. I hope it’s just an adjustment period.
This is a great place to share and it is never whining. As others have said it's a difficult diagnosis for the entire family and I think that the improvements in care and longer survival rates while fantastic actually make it harder too in terms of emotion. Figuring out how to come to terms with the unknown. I agree that it might be good for your husband to talk to someone but that's not for everyone. I know my hub likely won't ever do that. He does talk to friends and I encourage him too and to always do the things he loves as that is also a way of coping.
As for fatigue - I'm on Ibrance too. Cycle 54. First I had to accept that this med comes with fatigue and it's part of the deal. Once I accepted it I started to make changes that allowed me to continue to live my life the best way I can. I realized that while I can't do things the way I did before I can still do - I just take more breaks and naps, use yoga and meditation, drink water, walk every day. And on some days I just say - it's a lay in bed all morning day and I'm not going to apologize for it.
Where did you move to in Iowa? I grew up in the state and still have friends and connections there.
We moved to southwest Iowa, Atlantic, small town of 7000. I really love it here. We came from the San Francisco Bay Area, so it’s quite a change. Most notably, I have had this lump for a year and a half and all my doctors in California kept doing the wrong tests. My family physician here in this little town had it visualized and biopsied within a week.
You are right. It is an adjustment, for my husband, and for me as well. It’s moving into another way of being. And I’m sure as I adjust better to it, my husband will too.
You are right that it is an adjustment. It is a new way of thinking and managing your days. I've found that once you change your perspective it helps. My days are slower and I don't get as much "done". I've learned to be ok with that. My full time job right now is C-and not that I spend all day doing anything about it or even thinking about it-but it is always there. That in itself is exhausting. Men are very good about putting things in a box. They deal with things one at a time. Your husband likely has put C in its box and tries not to think about it. My husband is the same. I know mine would not consider therapy but he does talk to friends and that time helps him. No matter what they talk about.
I'm so glad you are liking Iowa. I grew up in the other side of the state near Cedar Rapids. The winter will definitely be different than San Francisco - a favorite city of mine. Take care and just take time.
I’m sorry. What a hard way to start this journey. Did you and your husband have plans that he is now disappointed will never happen or is he the type that needs to be waited on? There are plans that can be continued once you hit your steady state...my husband and I have continued to travel but opt for less strenuous travel..road trips or river cruises or visiting just one place. If he is the type that likes to be waited on you will have to be straight forward that his vacation at home has probably come to an end unless he wants to pay for help. I’ve found ways to adapt some chores...I put laundry in a bag and drop it over the railing and then take it upstairs in small batches, for one.
I’m on the same combination as you are and have been for two years. I’ve never gotten used to being as tired as I am because I was a healthy 70 year old until this reared it’s ugly head. I take a lot of naps now. I used to babysit young grandchildren for a weekend, now it’s 3 hours in an afternoon...thank goodness they are getting older! We all have our ups and downs in this. Covid-19 is giving me a real down because I’m not doing as much and not seeing my grandchildren or my friends. I was actually considering this morning if I wanted to be this tired for the next 10 years but I know I’ll get a lift when I get to start seeing my grandchildren again. They seem to give me some of their energy, which I suppose comes from doing something I like.
Give yourself some time with the drugs. You will also feel better when you come to terms with this new life and your husband! Good luck in finding the words to talk to him about this. Many men aren’t very good with emotions. Mine gets grumpy and says he doesn’t know why. Men!
Thanks, Elaine. I actually have two grandchildren who live with me. Covid is a concern for me. For awhile, I was washing and disinfecting everything that came in the house. I am in a rural area, so we have only had 13 cases in our county, and I just hope it stays that way, because it is literally impossible to keep our circle small and close, with everyone working, and visitation with other parents, maybe even school if they decide to do that this year.
My husband just said that he planned on us growing old together. I’m not sure what his precise plans are, but basically they include me being alive. But hey, I’ve had my moments of being angry at someone for dying.
I am sorry to hear of your situation. You have got some good advice from some of the other women here. I was diagnosed de novo in Dec 2018 after my back fractured. I started on Letrozole and Ibrance 125. Letrozole causes my 55 year old joints to ache. Exercise helps with that. Due to continuing low neutrophils (one of the side effects of Ibrance) I eventually started taking the 100 dose and I am now on 75 which has helped my low neutrophils. Reducing down to the 100 dose was a game changer for me and it significantly reduced my fatigue. My last scans in January showed “partial response” to treatment which is better than “stable” so the meds are working even on the lower dose. If your fatigue continues to be a real problems after a few months you might want to consider discussing with you oncologist about lowering the dose. I can’t stress enough how much it changed things for me. No more mid afternoon naps! I still do get tired but I’ve learnt to slow down and not expect too much from myself. Having said that I have spent lockdown tending to my neglected garden which is something I didn’t think I’d ever be fit enough to do a year ago. I think by slowing down I have energy for other things. I’ve learnt to prioritise things and the washing doesn’t make the top of the list anymore! One thing I can’t do is the hoovering of our stairs. Over time my husband has taken over and now 18 months later does the whole house, and (strangely) seems to enjoy it. It has been a journey for us both and he isn’t one to readily share his feelings but we have somehow reached the acceptance stage and feel every day together is a gift. In March we even managed a four week trip to New Zealand from the UK. But that’s a story for another time. You will adjust to your new normal and the meds including zometa will help with the pain.
My husband also expects to much out of me . He says it is because I don't look like I am on chemo - Ibrance/Letrozole. But I have been on it for over three years. I just don't have the energy I used to. I tried to get a cleaning lady, but they are outrageous for light cleaning. Sometimes he doesn't want to listen when I feel the need to talk. I think we need to print these letters and mail each husband one to read and send it in to the next hubby. I bet they can't pick out their wife's letter blessings Hannah
😂 that’s funny! Honestly, I said to my husband, I have cancer, I am on chemo (is ibrance chemo?), and he looked at me like I was crazy. He seems to be trying to manage his emotions more this week. I’m just really kind of an empathetic marshmallow, and easily crushed.
Oh my, I have the same type of husband. He has gotten better since the beginning but it was and still is a struggle. Firstly and most important is, in my opinion and experience, try not to internalize what is being said. You are not worthless or a disappointment so try not to accept that as your truth, And we are all getting older including him and it wouldn't hurt to remind him of that. Also, tell him you have a lot to deal with right now and his comments are not helping. Most oncology units have a social worker and it helps to visit them, together with your husband or by yourself. At least once. For my husband it is losing control of so many things. And now especially this disease I have that has disrupted our lives and he can't fix it.
I have learned to stand up for myself. Don't let anyone disrespect you. It is enough of a challenge just dealing with Cancer. I am on my first round of Ibrance again after an interrupted start last December and feeling very fatigued. I do seem to have some good days were I can do more. I am hoping it will get better. That seems to be what happens to everyone here.
This is a hard journey and yes it's hard on the caregiver. I know, I cared for my husband for 3 1/2 years. Just be patient with one another.
Yes fatigue and bone aches are part of it. My bone aches went away but not the fatigue. I just lay down when I feel like I need to.
I am no longer on your regime as it stopped working. My new treatment Afinitor and Aromasin makes me fatigued as well.
I will be thinking of you and praying that as time goes on you and your husband will adjust to this new norm. Just embrace the years you will have together.
I've just read your letter and the replies that are here. The only thing in a reply that I disagree with at all is that this cancer is harder on us than on our family caretakers. My experience is quite different than that. My mother died of lung cancer in 1985 five months after her initial diagnosis. She lived in a different part of the country than I did. I'd gone there for my second visit since the diagnosis about a month before her death and ended up extending my visit as it became apparent that she would not live much longer. My brother and I were with her when she died. Those months were much harder on me emotionally than having cancer myself has been. Not that it has been easy but I don't have the deep sadness that I did with mom. Back to your experience..... I started Faslodex in early 2009 and while I don't remember all the details, I'm pretty sure that I had fatigue and that as time went by, I had that less and less. I think it knocked me down for about 2 days at first and then gradually that time lessened until by about treatment number 4 or 5, that extreme fatigue was pretty much gone.
Faslodex worked for me for over 9 years! Before that, I'd been on Femara/Letrozole for almost five years and I met several women who had also gotten longer times from Faslodex than from Femara. Now I have been on Aromasin for over 2 years and seem to be pretty stable. I have bone mets. Meds like Zometa and Xgeva are given to those of us with bone mets. They both strengthen bones and seem to help bone mets heal. I currently get an Xgeva shot every six months.
I had been on Celebrex for several years before cancer, for traumatic arthritis and it has also helped with bone pain. I only really know that before I have had to go off the Celebrex for a few days a few times since cancer came into my life, and my bones began hurting while I was off it and got better quickly when I resumed the Celebrex.
About your husband, you know him better than any of us here do. Have you found ways to deal with his apparent anger in the past? My impression, possibly wrong, is that cancer either brings couples closer or farther away. Men like to be able to fix problems and there is no fixing this blasted cancer! Maybe it would help him if you could think of a few things he could do to "fix" your experience with the cancer. Building a ramp into the house, learning to prepare some of the dishes that your family enjoys. Going with you to onc appts and writing things down about what the onc suggests for treatment and for living with cancer.
My husband is a retired cop and clearly wishes he could wrestle or shoot our way out of this whole living with cancer thing! I wish it worked that way. He has accepted that I can do less than before and he has adapted new routines, like cleaning the floors in our main living area every two weeks and sweeping alot more often than that. We tend to have dog and cat fur everywhere! He is willing to be a sounding board when I need him to do that, but he is never going to be able to delve into his own emotions and share them. His first wife had MS and he learned alot about caring for a wife in declining health with her. I am sad for him that he is having to do this twice, but I also know in my deepest places that he loves me and is here for me. Not totally as I wish but he sure does alot of household things that I used to take care of and that helps alot. I certainly hope that your husband figures things out and learns to be more accepting of you and the cancer! It will sure be better for both of you if he can do that.
I tend to agree with you, at lest as far as end of life goes. I am not so afraid of death, although you’d have to ask me when that time comes. I am far more afraid of the grief it would bring to others. Long term living with cancer is, I think, harder on us.
I don’t have bone mets that I know, and I say that I know, because according to the PET scan I don’t have the cancer I do have. It is lobular cancer and harder to visualize on anything but an MRI. I was given prolia, to keep my bones strong and to prevent bone metastases but it did cause bone pain, and the threat of jaw necrosis weighed on me because my teeth are far from perfect, so I only took it the one time.
I have lobular breast cancer, too. with bone mets. One good thing about lobular is that it often responds well to treament with the various anti-estrogen medcations. But it is harder to find with scans and can be somewhat sneaky.
Men deal very badly with things sometimes, he probably sees you as the one who has been stong and in charge and he's got to face up to taking some responsibility .
When I had my original breast cancer my husband would mope around and drink too much saying he couldn't cope and wasn't it dreadful. Meanwhile I had concurrent chemo and radiotherapy and continued working. I used to get angry and think you don't know anything.
10 years ago be developed aggressive prostate cancer and died within a year, I think he understiod then. But I do remember feeling trapped because I have up everything to.look after him.
Emotions are very complicated and it's really important to be able to share .
Do you have anyone who can talk this through with you both?
My husband doesn’t talk through things. He clams up. His dad committed suicide just before his sixth birthday and he said he remembers everyone crying except him.
I do have a support system outside of him, though.
I’m sorry about your husband. I retired during my first go round with cancer. I was a paralegal and the chemo brain left a bit of aphasia after a horrible short term memory. I think my husband is not happy that he is the only one working, especially with the huge financial burden of cancer treatments.
I am originally from the UK but have lived in the US most of my life. Ibrance costs $13,000 a month, and my copay is $3,000. Fortunately I got assistance from the manufacturer for that.
I'm so sorry you are going through this. I have found that this dx is overwhelming for us, our spouse, our boyfriend, our children, friends and relatives. Everyone handles it differently.
I have found we all need to talk either to each other or a therapist. Support groups also help. We, and the people around us can't deal alone.
There are support groups online for caregivers. Maybe your husband might consider that.
I am in the same meds for two years now and the joint and muscle pain and fatigue is there but I exercise walking at least 10,000 steps a day and I also take Aleve which helps with the joint pain. I don’t know if it better than when I started two years ago or I am just use to it and try to ignore it. I find keeping active helps. Good luck to you.
Thanks. Is Aleve allowed? I know I was told I can’t take my favorite pain killer, Motrin, due to possible bleeding? It’s kind of frustrating reading all these instructions and warnings. I know they want to avoid liability, but it would be do much nicer to know what’s true and what’s not!
If they said no to Motrin, they will say no to Aleve. My oncologist made me quit taking it because it is hard on the kidneys as well as causing bleeding. He said he would rather I take an opiate than Aleve because opiates are more benign. That really surprised me. I have bad bone pain that will never get better so I am on Fentanyl with Dilaudid for breakthrough pain. If you are in actual pain, you don’t get a high, you just can function. They don’t worry about you being hooked on it. I guess cancer pain is an acceptable reason for taking an opioid! Elaine
So far Tylenol Arthritis has helped enough. I think it is probably due to the faslodex, because it seems to get better the farther I get away from the injection the better it is. Amazing what your doctor said! Are you in the US?
Yes, I am. (Oregon)I had two crushed discs from where lesions were/are, so they were very painful. After three months, the level 9/10 pain was gone and PT helped but I still had a 4/5 pain level. My oncologist thinks pain should not interfere with a quality of life, bless his soul! I asked at about 6 months if the pain would ever get better so that I could go off the opioids and the answer was unfortunately no, my bones were damaged to the point that the pain would remain the same. I think my oncologist is a saint because I have been able to go on playing with young grandchildren and gardening and quilting. Elaine
Oh man, I don’t know whether to laugh or cry at your oncologist. I had a bout of shoulder pain so severe I could not sit back in a chair or lie in a bed for two weeks. There was no quality of life. I’m glad the meds you have work for you and don’t incapacitate you!
Your post left me feeling both sad and angry. Sad for you who is saddled with this disease just like all of us--and angry that your husband is behaving so unfairly toward you.
If he refuses to join you for counseling, I'd seriously consider asking him to see a counselor on his own. Some of his stress is no doubt partially due to the change in lifestyle, i.e. moving from a large city to a small town. But he needs to be made aware of how much emotional support you need now and for the rest of your life.
As for the side effects, I've been on the combo of Ibrance and Letrozole for about 2 1/2 years and the bone pain and lethargy is much less an issue than it was at the outset.
God bless you and may he shine His light on your husband's sense of empathy.
Forgot to mention I have just finished my first 21 days on Faslodex/Ibrance. I certainly experienced fatigue for days at a time. I am thinking it is my system being affected. The dose has been lowered to 100 this time. I am getting blood work done on Friday and will find out next week how things are progressing. Wishing you well as you go through this medicine. I tried it once last November but had to stop it because of my immune system and I also had surgery Jan. 3rd. So getting back to it now.
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