Found you last night, will searching the web desperately for some more understanding.
I was diagnosed May 2018. So coming up for one year. I’ve been trying to understand your acronyms .... so please forgive my naivety here. Metastatic breast cancer. Her2 positive. It’s in my thoracic spine, ribs, hips and skull. There may be spots in my liver and lungs too. Bu I once says she unsure of this???
I searched for when ibrance stops working, as I’m feeling so tired, and have the most sensitive sore tummy. I’m also on ibrance and Letrozole. With denocimab injections every month. Oh and, I’m 62. So much older than lots of you here.
When some of you here say, beware a sore stomach, do you actually me the stomach itself, or the tummy area, below the belly button. (It feels like bowel problems to me.)
I have a partner I’ve been with for three years and he was diagnosed just after we met, with mantle cell lymphoma. He’s been in and out of remission about 5 times. Each time they tell him it’s a miracle he’s still alive. I don’t want this space to be about him though, as I have found there is no place for just me in my life as I am his major carer. So I’m looking for a place where I can talk about just me. Not selfish, just wanting for my concerns to be heard.
Also, does anyone know anything about prognosis for us? I Know that there are new trials happening all the time, but I often wonder what time I have left. I guess this is because I’ve had no time for myself, and there I things I’d like to do for myself. (I’ve recently told his small family wha have done nothing much to help him, that I’m taking a step back to look after myself and that he, or they will have to start getting him to his medical appointments.) and I’ve started ticking off a bucket list for myself. So trips with me 38 year old daughter, times with friends etc.
Thank you for reading my long rant.
Timtam56
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Timtam56
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You aren't being selfish at all and this is an excellent site to share worries and find answers with others who understand exactly what you are going through.
None of us know how long the meds will work for, don't look at the statistics they don't apply to individuals. Everyone is different and when the first meds stop working there are other options. Medical treatment has improved greatly in recent years.
I think a lot of us take the attitude that we are prepared for the worst but hope for the best. You need to make yourself a priority in your life.
Fatigue seems to be the most common side effect of ibrance, it doesn't mean it's stopped working. Are you having regular scans? Your blood tests will give an indication of what's happening but the scans will give your oncologist a better idea. If you are worried about pains ask your oncologist, he/she needs to know,
Thank you for your reply julie2233. Yes. I had scans done last week. Will find out results next Friday. And I have these (CT and delayed bone scan) every 3 months. Also have regular one month bloods and onc catch up. So will certainly raise concerns then.
I'm 65, so more ancient that you. You are wise to want to carve out time and space for yourself. It will become an important part of coping with mbc. You are smart, also, to let your partner's family know they need to step it up. You will have your own round of appointments and the meds have side effects, and you will need to rest and reduce your stress. I started traveling when I got diagnosed. Previously afraid to fly and life seemed too busy. Traveling helps save my sanity and gives me joy, so happy to hear you are planning a trip with your daughter. Keep planning! There are guesstimates out there how long we might have. I don't do close research, because it escalates my anxiety and isn't helpful to me. I'm 5 years in. I think about this, but keep going. There are new treatments all the time. Let's plan on getting lucky and getting older. Glad you found this site. Time to put yourself first, TimTam.
Welcome. It is hard to put ourselves first when we’ve always been the nurturing one. But it is bucket list time. I’m taking a trip with my daughter this weekend. Paul can come too :). I think there are many women on here that are 60 and older. 50 in my mind,though my body caught up.
Ha ha. Laurac1014. Yes. Especially when aged care offers some respite for me in an aged care facility. Hey wait a minute. In my mind only 38 years old for sure!
I’m 71 and was diagnosed with MBC in April 2018. I’ve been on Letrozol/Ibrance since then. Exhaustion is pretty much my only side effect beside the pain from my numerous bone mets. I’m also 38 in my mind and have been considered younger than 71 by most people. My doc says I’ve got 20 years. Of course I know he can’t really predict that but that’s what he thinks the state of medical care for our disease is going to get us to in this day and age. I’m pretty positive so I’m going with it! I would talk to your doc about your stomach issues. The problem with this disease is that we blame every symptom we have on it but sometimes we have the flu or a cold or pancreatitis or appendicitis none of which are caused by this dratted disease! Good luck and do take time to take care of yourself. Elaine
Does your pain from bone mets come and go? When I have pain it is only from my right hip area. It stays awhile then goes away. Now, as of 4 days ago, the pain is further down and hurts when I walk. Do you know where the pain comes from, inflammation?
My pain moves from one site to another SoCalLady. Was misdiagnosed for eight months because of this and the fact that I don’t lose weight, by a GP. He told me “you DON’T have cancer” for about 12 visits and kept prescribing muscle pain relieving drugs. So yes. I have various pains. It often feels like it’s bone pain to me but I don’t know the difference. I always try to explain that my ribs feel like they could crack or pop out, and I have heard popping sounds in the early days.
And my sister died of Cancer Unknown Primary.... 10 years ago, so I think things at a lot different theses days. But hers was painful in her upper legs too. I thing our cancer can affect the long bones rather than lower down our limbs. A lot of dark blooms show up in my hands and ankles in xrays, but that are not metastasis. I’ve been told it’s very unusual for this cancer to go lower than the long bones.
I hope this explains and answers your questions. T
Super to meet you here..we are here for you...it’s a place where you can be honest about your feelings and nobody will care if you rant and rave..we all do it at times
You’re not selfish and need to put yourself first ...i always go to my appointments on my own unless it’s a scan result I’m worried about..it’s boring for people just sitting in waiting rooms and my husband gets in my nerves as I can just tell he’d rather be elsewhere
I’m the same stage as you..diagnosed last April and on the same meds..I’m 65... I have many bone mets and in pain where I have a fracture...I take painkillers all the time but still ride my horse and do yoga...I did think of stopping but what the hell its what I enjoy...I wear a. Air vest when I ride so if I come off I’ll not fracture any more bones in my spine
My advice to you is...think of yourself first (men do that all the time!!) and do stuff that makes you happy...it’s hard and I struggle some days and cry a lot but only you can change things
Hi. Glad you found a place where you can feel free to vent and share your thoughts. Happy to hear that you are taking much needed time for yourself!! Nothing selfish about that! Enjoy your vacation with your daughter. Xoxo
Welcome! You have found a wonderful group of warriors who are caring and encouraging.
Please use this site as a safe place where we all understand what it means to live with mbc. Pay no attention to statistics and somehow find time for yourself.
So sorry your partner is not well. That is alot of stress. My partner has emphazema and severe arthritis. I am 65 and we support each other and encourage each other. It is very stressful and exhausting. But, you have each other and that is what is important!
I wish you well on this mbc rollercoaster as life has thrown us a curve we never expected!
Hi! Glad you are here. Prognosis figures depend on many things. But they are averages based on whatever treatment was available when those estimates were made. I've been living with bone mets since 1998. It's only been in the bones and I've never had a clear scan. I've been on 23 treatments over time, some twice. As other have said, make sure your doctor is aware of side effects of treatment. Is palliative care available in OZ? It's just starting to blossom in the US and this service can help us live better lives while on treatment. Good luck to you and keep us posted! Check out my blog if you wish: catsncancer.com It has more info about my treatment history. Too long to repost here.
You are not selfish in wanting to take care of your own health and talk about what matters to you. It is such hard work caring for others (believe me, I know), especially when you have a chronic health condition yourself. So I would say do what you can to rest and recuperate, whether that's a nice long soak in the bath with a good book, a foot soak (wonderful), a nice massage or even a nap. It is important to make time for yourself, otherwise you will burn out. Asking others to help is a good idea, so I'm glad you did that.
As for prognosis, that is not something any of us can answer. Even the oncologists cannot say for certain, and to be honest do you think it would help if you knew you had ten or twenty years left? Wouldn't we then become obsessed with a date if we knew how long we had left? As it is, treatments are improving, new trials and treatments are in the pipeline, many symptoms can be managed and even eliminated, so our disease can be treated as a chronic condition, the same as HIV, epilepsy, diabetes and other conditions. If you try to look at metastatic breast cancer as a chronic illness, rather than an incurable disease, then you may start to shift your mindset and feel more positive about living, rather than dying, with this disease.
Hi Timtam, agreeing wholeheartedly with all of the above! Everybody needs to rant and a little attention for themselves. Glad you've taken the initiative to care for yourself. Hugs!
My first breast cancer diagnosis was at age 43, stage 1. Then 15 years later I was diagnosed with Stage IV with mets to left plerual membrane. I'm turning 63 in a few months, so we are close in age!
In March 2015, just after the FDA fast tracked Ibrance approval, I was one of the 1st patients in this region to be placed on the ibrance/letrozole treatment. I've been on it continuously since. My RBC, HGB, HCT, WBC are always low but never low enough to treat or lower the medication dosage. However, I sure can feel it! Fatigue is my NUMBER ONE issue.
As far as the abdominal pain, is it possible this could be from either constipation or diarrhea? I too have abdominal discomfort and have been assured that nothing abnormal shows on my scans and its probably indigestion. If your abdominal pain persists you need to see your doctor as there may be something else going on.
Regarding prognosis.......Due to advances in treatment options MBC is becoming more of a chronic disease. Statistically, our prognosis is poor. However, when I received my stage IV diagnosis in early 2015 I traveled to Houston, TX and met with a female breast oncologist who had been very involved in the clinical trials of Ibrance. She told me then that she had female patients who had been on Ibrance for over 4 years with no progression of disease! Well, thats where I'm at right now, 4+ years, no progression an no evidence of current disease! If and when this treatment fails I will return to that oncologist in Houston and find out what she is doing with her patients who are no longer benefiting from the Ibrance/letrozole treatment. Until then, life goes on.
Do not let anything stand in the way of that bucket list! None of us know how much time we have left so live each day to the fullest.
Yes. I am now able to test art planning and ticking off that bucket list. Seeing as my partner, who I was major carer for, for the last 2.5 years, died two weeks ago. Non Hocking’s lymphoma.
It was very hard to do anything for myself and I wanted to be there from him. But gee, it was hard. Emotionally and physically.
I am going through all the stages of grief at the moment, and sometimes all the stages in one day. Sometimes I feel nothing for a whole day. Numb!
But still I think I’m doing very well..... considering.
In two weeks I go away with a dear friend to central Victoria, to a place that is supplied by a thing we have here called the Otis foundation.
They give away holidays for families with a person who’s got breast cancer. For free. 3 nights in a beautiful house with a spa. A place called Daylesford.
Feel very blessed to be having time out for myself here.
Then in July I’m going to Western Australia. Maybe I’ll swim with whale sharks. Ningaloo reef. Pretty stunning.
Do any of you ever travel overseas? I imagine we can’t get travel insurance, but perhaps it’s still worth travelling even without it. Because hey! If something goes wrong, .... is it worth not doing the things we long to do?
Thank you for your reply.
And I agree. We have a licence to live life to the fullest.
I'm sorry for the circumstances that brought you here, but am very glad you found this site! And when I read about your partner, I immediately thought of my friend who was diagnosed with mantle cell more than 20 years ago (after initial misdiagnosis) and is doing beautifully today!
Metastatic breast cancer (MBC) can indeed be overwhelming. It's a good idea to keep copies of your pathology reports and test results for ease of reference, and also if you consult with a doctor outside your health network.
If you'd like information about treatments, symptom mitigation, a Glossary, and more, you may want to consider having a look at my manuscript "The Insider's Guide to Metastatic Breast Cancer" which is available on Amazon and also as a complimentary .pdf. I truly believe that knowledge is power, and that discussing options with one's medical team can result in decisions that all parties feel comfortable with. For more information, you (and others) are welcome to visit insidersguidembc.com
Wishing you peace of mind and years of the best possible health!
Unfortunately, my partners cancer was very aggressive. They tried many different things from very heavy duty chemo, to Stem Cell transplant, (autologous), and many trials, until his body could take no more. It was quick. 2.5 years from finding the lump to his death. So good that your friend is still going well.
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Hello from a new member, just starting Ibrance 
The Artist
Hi 👋 everyone.....
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