It has helped me so much to learn that there is such a large community of us out there, and to be able to read about all of your experiences that are so like mine, but also different. I was diagnosed in May of this year with MBC to my bones 3 years after a bilateral mastectomy. I was naive enough to hope I was clear as at the time of my mastectomy, my sentinel node was clear. So no radiation or chemo. I felt so lucky! Then in 2019, I spent 5 months with a broken rib thinking it was a pulled muscle - finally the pain got so bad I went in for a CT scan, and I'm sure you all can relate to the rest.
My question is to those of you who have been living with this for years - or at least for longer than me. I just had a scan that showed lesions in my lungs - but I also had a cold at the time. I re-scan in 2 weeks to see if it has gone to my lungs, or if it is just a false alarm. I am struggling with the treatment and the changes and challenges it brings (I am 50, on Lupron, Letrozole, and Ibrance - Zometa every 3 months). I am having problems with the hot flashes and night sweats, not sleeping, and joint pain. I have been so lucky to have had mostly great health my entire life - I have always been athletic and active. I am a high school teacher and work full time, and just broke up with my partner of 22 years. I now deal with a household on my own and 2 active dogs that need to walk, plus work.
I am struggling with trying to find a balance with a "death sentence" diagnosis, still living my life with joy and love, and finding a way to fight through the emotional and physical toll of...dealing with life. I feel like I am coping well - but am having a hard time envisioning this emotional battle going on for years. And I hope I have years to battle it! What a contradiction! I am living in the now as much as I can, but also am realistic that I am buying time and hoping for something miraculous to come along. Is that what you all do? Some of you sound so "together" with all of this that we face - and I'm sure you all have bad days, but...how do some of you do this day after day? I can't see it getting better, because we all know it mostly just gets worse, but you can't live like that.
So, for us newbies, what are some of your coping skills for getting through this on the long haul? I am planning on living with this cancer for as long as I can instead of spending time dying of cancer. What else helps you?
With so much respect and hope for us all,
Alana
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I am going thru a rough patch so forgive me for not offering something new. But if you read thru my posts especially my early posts, you will find a train wreck of a woman stunned that this disease, “which happens to other people,” happened to me. I wanted to end it all the anxiety was so bad. If you read thru the posts you will find mostly women who struggle to do their best and celebrate good news, but also fall apart and vent when there is a setback. There’s no secret sauce to getting on with your life outside of cancer For some it’s faith. Others have children to raise. Others are naturally more optimistic and try to focus and experience the goods things in their lives. I’m agnostic and cynical. I’ve turned to Buddhism in a moderate way. Travel. At the age of 65 I finally get how important people in my life are and I’ve let a lot of my old wit shroude d guard down and been a more centered, hopefully more authentic person. This disease is forcing me to make peace with myself. It’s a constant effort. Whatever gave you joy and peace before is even more important now. Take good physical care of yourself. Try to live your dreams. I’ve travelled a lot and nothing, not even this stinking disease, can steal my memories. I appreciate my friends and family so much more, and I tell them so. It’s very hard in the beginning. And setbacks are hard too. Make sure you have support when you need it and dont let this b;tch rob you of your joy.
Nan is right — again. 😀. It is very very hard the first few months. You go from healthy and active like you to wondering why your body is turning on you. You wonder whether to bother at all, how to figure out treatment options, and fret regularly about scans and tests. Each of us finds our own way. This site is invaluable for allowing me to vent in direct ways that I won’t with my loved ones. Please, please know that we are here to listen, opine and encourage. For me, after about 2 months from my diagnosis, I somehow realized I wasn’t dying tomorrow so to speak, and that was like a switch going off for me. I’m big into self care, therapy, exercise, and use CBD tincture and anti depressant when I need them to alleviate when it becomes too much. I made the decision to tell very very few friends and only close family. I don’t want “the look.” Others find sharing helpful. As Nan says, we all stumble but we keep putting one foot in front of the other. Hang in there and reach out when you need us.
Yeah, another knock upside the head. I will find out my "treatment plan" by Friday. I hope. This just confirms for me that it is time to stop working, though work has also been a saving grace. Hard to be morbid when kids are coming in complaining they can't breathe (stuffy noses) and "can't focus," (as a child, I never knew I could have a problem focusing). Currently a school nurse, getting my colleague ready to slide over into my chair. Every time I clean out my desk, something happens (last time was diagnosed with this b!tch). Maybe I should stop cleaning out my desk!
Please keep us posted. It used to really bother me the ups and downs but now I move on the best I can. An occasional pity party helps. I retired 2 months after mbc diagnosis. Just closed down my business, it's been the best thing for me. I miss my clients but I love not having a schedule. To me everyday is a Saturday. I don't see how you ladies can work take of family and all the other things you do. I am truly amazed.
I'm glad you made the right decision for you. I still work. To be honest, it's the best thing for me. I'm 40 years old, so feel too young to call it quits and close down my business. But my life is still very busy on top of that. I have my husband, widowed dad and two disabled brothers to think about too. My dad relies on me and my husband to help him with one of my brothers who still lives at home with him and I also go visit my oldest brother every week, who lives nearby. So as well as my own appointments, I take my dad to some of his, I shop for my family, attend meetings with social workers, community nurses, GPs, support staff, and others. I'm also the first port of call when staff need to discuss anything about my brothers or need anything for them, as I am their advocate. I feel tired just typing all that! It might not seem like it, but I do also make time for myself to rest!
Wow you have a lot on your plate. I have been there. Just take care of yourself you are still young. I am 61 and I only have my best buddie Archie to take of. He's almost 11 years old. He's my Lakeland Terrior. 😊
My old boy is a 13 year old Maltese. He has always been active and maintained a good weight. As I always tell him, “you’re my best boy.” Love that dog 🐶
Thank you! I love my family and want to do all I can for them, but I am only human. I was feeling really fed up yesterday. I've been at a house/pet sit looking after four dogs since Wednesday and things were getting me down (I leave in a couple of hours). I think part of it was down to disturbed sleep.
The dogs haven't been settling so well at night and at least one will be barking, scratching at the door to be let out or taking over the bed. I'm not used to that, as the bedroom is out of bounds to our cat. I value my sleep! So just before I went to bed last night I was on the phone to my husband complaining about how he doesn't know what it's like being me, living with this disease and so on. Once I got it all out, I was fine. He understood that I wasn't really having a go at him. I just needed to vent!
As to wanting every day to be a Saturday, if you have reached that point then I can certainly understand why you would want to retire. You work very hard and it seems that your treatment leaves you with quite harsh side effects, so if you do have more time to relax, sleep in and do more of the things you enjoy doing you will probably be happier.
Very thoughtful sweet reply. Yes we do have to vent. It does get overwhelming. Got to let it out and let it go so the stress doesn’t make it worse. Glad you have a great husband who gets it
Think I am getting to point where everyday needs to be Saturday. Since I’ve had some progression now, I want time to indulge myself, wake up late, travel off season and take walks on the beach w my husband and dog. I like my job and it has been a great distraction from my medical issues, but all
Things considered I need to have more free time. I am will be 66 soon, my husband lost his job a year ago and has been home since. It isn’t the best thing insurance wise or financially, but we have enough to live modestly. I think I have to cut my loses and lose the alarm clock
Yes. I have a node in my chest that has been slowly growing and compression in my esophagus caused by cancer. There is a treatment plan evolving and I go for the radiation screening Friday. Will most likely get chemo at the same time. It may be the Ibrance isn’t working so well anymore. However my lungs, according to the radiation oncologist, “look fantastic.” That’s where most of my Mets were. Go figure. This is going to be a taxing few weeks so I hope you all excuse me if I’m not around much. I really don’t know the finer details and don’t have the reserve to go into it much. I had 5 pretty stable years after my chemo and Ibrance/ Faslodex treatment. I hope to get 5 more after this. Then who knows, a new miracle drug? Take care. I’ll pop in from time to time ❤️
It's understandable that you will need to focus on what's coming up next with your new treatment plan. Let's hope for more than 5 years though. How about 10, and then 20? That's how I try to look at it. With the next treatment coming up I hope that it will work and get you back to being stable again until the next new drug comes along that will add even more years. It's really good news that your lungs have responded so well to treatment. So now if that node can be tackled and tamed you can get back to feeling better again.
You're welcome, Nancy. I hope for many more years to come for you and for us all.
Sophie x
Hi Alana. I don't think there's a balance to be found. One day we feel good, another day we feel great and yet another day we feel like crap! I live day by day and decided I am living with a chronic disease and not a death sentence happening soon. I have found a lifestyle that seems to fit me well and keeps me relatively active and stable. I eat healthy, excercise (should do more), love my family and friends and travel as much as I can. I am getting better at cutting out all negativity from my life.
I think each of us has to find our own new normal. It's not the same for you as it is for me. You'll find your path to living with this chronic disease, you'll see.
We just need to remember every day that there's always something to be grateful for and I hold on to that. I think that's the start to living positively and not sink into depression or give in to fear of something unknown.
Here's to longevity and positive days for all of us. Hugs to you!
I am 69 and on Ibrance 125 and Letrozole and a basket of other stuff. I take an antidepressant and anxiety meds. I have been running my company for 46 years. Now the staff is doing a great job.
For me, I enjoy knitting. Blankets, hats scarves. Nothing difficult. So try a new hobby. I go to restorative yoga twice a week and work on breathing and relaxation. Each yoga teacher has a different method and it makes it interesting.
I have a relaxing candle and listen to Marconi Union relaxing music.
I’d love to hear other ways to bring positive vibes in our bodies and minds.
I’m 65 and diagnosed April 2018 with mbc...24 years after initial stage 1 breast cancer....such a shock as I assumed I was ok
Like you I’m used to an active life I was still working as a dentist and riding my horses regularly....fit as a fiddle
I’ve retired now and still ride sometimes but I have a lot of bone pain especially where I have a fractured vertebrae at T5... I’m having some palliative radiation soon to see if it will help...the pain is my worst symptom and really depresses me....I do yoga every week and swim which takes my mind off the pain
I’m taking Ibrance letrazole and denosumab...also off label drugs from a clinic in London plus loads of painkillers
I hate this life and do have some bad days...I tried antidepressants for a while and some therapy which didn’t suit me
I did have acupuncture which although didn’t help my pain it did help enormously with night sweats...I only get these occasionally instead of every night...ugh!!
Do read lots of posts on here because whatever is happening to you there is a kindred spirit out there who is coping with exactly the same as you and I think it just helps to know you’re not on your own
Hi Barbteeth. What is palliative radiation? Does your ong think the back pain is coming from your vertebrae pressing against a nerve? I have gone from no back pain to intense back pain recently. Unable to lift things nor do my normal yoga or stretch exercises. My primary doctor gave me a very low dose of Hydrocodone which did not even take the edge off and then just yesterday prescribed Gabapentin which is supposed to attack the nerve endings and I did get some relief from the sharp stabs. She also requested approval for an MRI on my back. My mets are to the bones. Please let us know if the radiation helps.
Had mets in spine, then lifted something awkwardly that I knew I shouldn't have. A break did not show up in Xray only a CT. A few months later and Thank G-d most of the pain is gone. I did a few rounds of radiation. I think time also helped.I wanted to go back to stretching etc. but was advised that there are actually exercises that are not good for the spine etc. Just recommending you ask expert advice.
Was told not to do the candle...etc. my favorites.
Palliative radiation (or radiotherapy) is used to ease pain, not cure the cancer. It can be really effective in dealing with pain, but it can cause side effects after it has been administered.
Hi Alana: I was diagnosed with BC in 1991, stage 2. I had a lumpectomy, radiation and chemo. I was diagnosed with MBC in my liver in February of this year. I had an elevated alkaline phosphatase. I have been on Faslodex since March. I have difficulty swallowing pills and capsules so I am on the shots only. My alk phos is in the normal range now and my MRI scans have been stable since the one I had in February. I am hoping for shrinkage of the tumor, but I am happy that the scan in July and October were stable. I have days when I feel down, but other days when I feel good. I walk at the mall at least five days a week. I feel better after I walk. I take thinks one day at a time. I retired a year ago at age 69. I have many friends who check on me daily to see how I am doing. My family is wonderful, especially my husband. I have an 18 month old granddaughter and I want to see her grow up. I consider this a chronic disease and am hoping that some day there will be a cure for all of us. God bless all of us. I wish you the best.
Hello Alana! Thank you for sharing your story with us! I agree with most of the responses posted. I had stage 3 breast cancer in 2016. Got a left Masectomy, had 14 lymph nodes removed with 4 positive. I had 11 sessions of IV chemo, 26 radiations, and then thought I was good to go! I was a “cured” survivor! However, in the summer of 2018 I was playing tennis and I thought I had pulled a left quad muscle. After getting massages, going to a chiropractor & applying cold & hot packs for months. The chiropractor sent me for an MRI in April 2019. I was shocked to find out that I had a tumor in my left pelvic bone at the hip socket. I have had SBRT on the tumor, I’m on IBrance, Faslodex, Xgeva and a whole lot of supplements to relieve side effects. I walk with a cane or in a wheelchair to not put full weight on my left side. The bone could take up to a year to heal on its own. Feel free to review my posts to see the supplement specifics.
I have good & bad days like everyone here.
I have radically changed my life in these 6 months. From working as a viable independent professional & playing tennis & working out routinely to a dependent cancer patient retired and on disability.
I am a Christian and it helps me immensely to know that God loves me & all this suffering has a purpose. Prayer & reading the Bible help me to focus on the good in this difficult trial we all are dealing with. What is the good? For me it is:
1. Seeing the beauty in each day
2. Thanking God & asking for his help daily.
3. Clarifying what’s really important. Getting rid of the rest of the unnecessary, negative & meaningless things in my life.
4. Being more compassionate to people suffering.
5. Living in the moment.
6. Loving the few true friends & my family & having more time to truly enjoy them.
7. The gift of time & simply enjoying nature. Birds singing, sun shining, the clouds, etc.
Praying for hope & healing ❤️🙏❤️🌈!
Hi Alana,
I was diagnosed with breast cancer in March 2018 and I was then told it was metastatic two months later, so I can't yet say I've been living with this diagnosis for years. But I can say I have come to terms with it. That doesn't mean I have given up and am waiting to die. Far from it! I'm tackling this disease head-on.
Your diagnosis is still relatively recent, plus you mentioned the breakdown of your relationship. I'm sorry to hear that you are going through such a stressful time in your life.
You may be struggling to carry on as normal with work, caring for your dogs and other aspects of your life. But what I found is that a "normal" routine (albeit while living with this disease) helps as a distraction, focuses my mind, gives me purpose and prevents me from wallowing and feeling sorry for myself. I run my own pet sitting and dog walking business. When I first met my oncologist and she broke the news to me she asked what I do for a living. When I told her, she advised me to keep working, which didn't make much sense at the time. I was tempted to stop working, as I didn't see the point, but now I do. It's up to you to decide, but for me personally it made sense to continue working. I am not my cancer diagnosis. People often say I don't look ill (many of us don't, do we?) even doctors!
So my suggestion would be to take time to come to terms with all the changes that have taken place in your life, including personal losses, assess what's really important in life and do what you can to ease the load you are carrying. That may involve scaling back on activities that are draining, and accepting more help from friends and family. Making time to relax and get plenty of sleep is also crucial.
Don't forget that you can also vent on here at any time.
Thank you - your advice resonated very strongly with me. Work is a lifeline for me as a newly single person. And people keep telling me how good I look - but I think I just look tired. Sleep has been very difficult for me - both because of my racing mind, and also because of my insane night sweats due to the lupron and letrozole. I'm trying a new drug this week called Nortriptalyn - so we'll see how that works with my other antidepressant. They want to switch me to a different antidepressant called Effexor which supposedly helps with the hot flashes and night sweats, but I hesitate to mess with my medication too much.
In addition to my break up, I also sold my dream house in the mountains and moved closer to work. This was heartbreaking for me, but I feel like I need to work as long as I can as I am not very close to a decent retirement income. Disability will provide, but I'm not there yet. I feel like I need to absorb all of the changes in my life and find a new normal. I need to cut myself some slack, I think, as my perfectionist tendencies are unrealistic now.
Thank you again for your response. I am so happy to find some understanding!
You have had so much going on. It's no wonder you have been feeling so overwhelmed and down about things. This might sound like a cliché, but things will start to improve and settle down. As you get into a routine of treatment, deal with the emotional side of things with your break up and your new move, then you will start to feel a bit better. It is possible to feel relatively normal with this disease, but it's not automatic. It takes time to feel that there is more to life than this disease.
I had a hot flush days after I started treatment and another one last month (very random!) so I am not sure why I am not getting them all the time. My oncologist hinted that I would. I think that diet and exercise may help, but I am not sure if that's why I don't get them. That's something else worth mentioning to your oncologist to see what might help with that. If you are plagued with night sweats then your sleep will be disrupted.
hi Alana, I was diagnosed in April so just around the same time. I'm on Ibrance (Palbociclib in UK), Letrozole and Denosumab (Xgeva I think in USA) and, although there's been a few bumps in the road, I'm coping well with it now. Original DX in 2010, small, found early, no chemo!!! Bought into the "caught it early, no spread" propaganda and thought I'd cracked it until earlier this year after a persistent cough, was diagnosed. Spread to lungs, liver, chest wall, lympth nodes and 3 areas on my spine. Don't do things by halves :). It is hard but I'm like you, working is key for me otherwise I'd be sat at home and everything would be about Big C. I'm lucky enough to still be fit and healthy (ahem!!!!) well, I am, I just get breathless, everything else is fine for now. And "now" is where I choose to live. each moment day by day. My (adult) daughter told me "we don't have time to be sad mum, we need to make happy memories" and of course she's right. I'm just like everyone else on here, though, my mind wanders off into scary territory and I get overwhelmed but I refuse to let this horrible horrible disease rob me of anything more than it can!
This forum has been a godsend for me - a mixture of therapy, advice and just somewhere to vent with people who know exactly what you're going through. No matter what your query, you can guarantee someone on here with have an answer for you. It's great, my Oncologist isn't the best so this is my main source of information.
The ultimate dream is for a cure but in the meantime, take comfort in the knowledge that there are ladies on here who have been fighting the battle for a good few years and if/when meds stop working, there are other avenues to explore.
Wishing you all the very best of luck with everything.
Hi Alana, I am 71. diagnosed with bc on Apr 2011 (HR and Her2 (+)). on May I did lumpectomy on left breast and removed 18 lymph nodes (1 was cancerous). Followed by chemo and radiation. Like many, I thought I am done! Was doing ok until July 2018 my neck start bothering me. They thought it is osteoarthritis and treated me for that (medications and physical therapy) nothing worked until MRI showed that I have bone cancer on the neck. The pain was horrible and many times I decided to end my life! Somehow I changed my mind! Did radiation again and started IBRANCE ,faslodex , xgeva last December. I am relatively stable and horrible pain is almost gone. I will have CT scan this November 🤞🏽. I am still worried about it, because IBRANCE is for her2 - and I was her2+! They couldn’t do biopsy because of the location of cancer.
I live day by day and think of everyday is a gift. I start walking again and is dealing with this new normality of the life. I wish you the best and hope for all of to overcome this nasty disease .
Hi Alana, I have a photo in my kitchen that says “Never mind walking a day in my shoes- try thinking a day in my head!” I’m 56 and I was diagnosed with MBC in April 2014, and it has certainly been a roller coaster ride! like everyone else I have good days and bad days, and when you think you’ve got your head around it - it throws you a curve ball!! but I try to eat a healthy diet, play a mindfulness app or cd at night, I go to Pilates once a week (find it great for the joint pain) and try to do other exercise at least twice a week even if it’s just a short walk. I also try to have something nice to look forward to, (particularly around scan time) lunch with a family member, coffee with a friend, a trip to gardens or a heritage site, a night away - anything to keep me looking forward! I tend not to commit to anything too far ahead (6 months seems to be my limit- or whenever my next scan is due) hopefully you will find out what works for you, and your side effects will improve a bit. Sending you a big hug. Anne
Reminds me of the Sonic commercial with the two guys in a car. The blond guy says to his friend, "don't try getting into my head, there's barely room for me in there."
I was diagnosed MBC Feb 2018 at 35. Went to hospital to have a baby, came out with a fractured tail bone, appendicitis, sepsis, MBC to bones and liver and a beautiful baby girl under my arm. So like everyone on here, diagnosis was totally unexpected.
Life was abysmal in the begining, too sad to think or talk about really. But it did get easier over time. MBC is a part of my life BUT it isn't my life. Sometimes I even forget I have it. I've gotten used to the aches and pains, they're all part of the new normal I suppose. I don't feel "sick", I don't look "sick" and I certainly don't act "sick". I have chosen to tell only close family and friends as I don't want to be reminded of it all the time. It's not fair on my husband/parents/siblings. They are walking the road with me and it's very very hard on them also. Anyway it's my business, no one else's.
There are the odd bad days now, with a few tears but certainly no tantrums. I'm very matter of fact about it, it is what it is. No one caused this, it's nobodys fault.
My ovaries were removed a year ago because my oestrogen levels couldn't be controlled with medication. I'm now on the palbo 125mg/letrozole combo. My largest liver tumour at diagnosis was 9cms, it's now holding steady at 3cms. I had another 20+ smaller tumours and they're all pretty much gone at this stage. Everything seems stable at the minute, fingers crossed it will be for many years to come. I have a toddler so I've no intention of buggering off until she's at least through college. There's just too much life still to live.
Wow! If you can withstand all that, you will be ok. Having a youngster doesn't give you any time to take the pity road anyhow. We all hope that before that child is 10 yrs. old there will be a cure or probably some very good medicine for controlling. All the best to you, Minesing Woman (June S.)
I am very hopeful for a cure in the next 5 years...there are several vaccines (cures) in trials now... Also keep in mind that people with bone mets only do well for a very long time...some staring down the 10 year mark...I also work full time. Just switched jobs back to full time inner city children’s pastor. Was working as a inner city behavior specialist at an elementary school...I’m 3 1/2 years in. Just got my first clear scan in May...😀 There is a lot of hope with this today!
It's a rollercoaster with good days and bad. I find I'm living one day at a time but never know how I will feel. Don't plan as I used to and try to cope as best I can.
The support on this site is invaluable and I wouldn't be able to cope without it!
Post anything and everything and without fail there will be someone here who can relate, and/or offer advice.
We are sisters in this fight and this is the only place where, I believe people really understand!
I rely on God and good friends who give me courage. Reading the Bible gives me hope that God knows all about it and will work for my good. When I look around the world and see those much worse off than me, I can’t help but be thankful.
I first felt the lump in 1990, and quickly went in for a mammogram. The mammogram they said looked a bit suspicious, but the doctor decided it was just lumpy breast tissue. Fast forward to 2013, SAME SPOT started swelling, aching and felt hot/fevered; went for mammo and it was stage 2 or 3, believe it or not I can't remember, 4 cm tumor ER pos HR neg breast cancer. Lumpectomy w/8 lymph nodes removed leaving clean margins, then rads and completed 30 of 32 and quit due to extreme tiredness and bad burn. Refused chemo. Fast forward 2019, shoulder issues on opposite side with injured rotator cuff after lifting heavy television; xrays revealed indications of bone cancer. Biopsy scheduled, but cancelled due to hospital calling the night before and demanding I bring in $1,000 co-pay, after my insurance told me it was $100 co-pay; then 3 mos. or so later, I slipped on a rug in my kitchen and broke my femur above the knee. I got my biopsy then during surgery, and now have a titanium rod from hip to knee and it healed really nice. I said all that to say this; I obviously had this almost 30 years ago, but no one did a CT or bone scan then, or even a biopsy. Now they want to scan me every 3 mos. ... NO! I have chest xrays and lungs are now clear after 1st one revealed too many nodules to number in my lungs, and it was from coughing and vaping, now all gone. I tried to tell them that, and that I had just stopped vaping again because of the cough, but they said, no, we don't think that's the cause! Praise God, it sure was the cause! I took ibrance for 4 mos. at 100 mg. and recently had to stop due to chest pains. I feel ok taking the letrozole alone, along with other supplements, then the onc said if it ever progresses then I can go back on the ibrance at a lower dose, 75 mg. The ibrance took all the pain away that the letrozole caused which I think is totally weird. After stopping ibrance, I went through 2 weeks with a weak bladder, hardly making it to the toilet in time. Now, almost 2 mos. without it, I no longer have issues with my bladder and am quite continent <is that the word opposite incontinent? lol>. My mouth is no longer running nonstop, although I still talk alot, it's different. But while on ibrance, be sure and monitor your labs, especially your MCV and MCH values on your CBC, as mine had indicated liver injury after just 4 mos. on it, both had increased 10%, which is not the reason I quit but the chest pains started before I could even get in to talk about it with my onc. I looked up what elevated MCV and MCH mean, on my own, and I'm no doctor but I was concerned so that's how I found out and it may or may not be accurate information as, like I said, I never approached my onc about it and when I saw him this month, I casually mentioned it and he didn't say anything about it, but basically ignored what I said. I share my experience because maybe in some way it will help someone else. My MD prescribed atorevastatin for my high cholesterol and I am not able to take it because it makes me feel horrible. I take ginger root capsules, 3-540 mg. daily, and I hardly ever have hot flashes. Aspirin is my pain medication, nothing works as good for me as aspirin does, narcotic or non. I take metformin, bisoprolol, iron, calcium, D3, vit E, Fenbendazole, magnesium, and aspirin. Here's my question, whenever someone gets a cancer diagnosis, why in the world aren't they given ct and bone scans at that point? I think it's absolutely incompetent NOT TO! If you have cancer, you should be 100% checked out. Okay, now I'm venting. The good news is only God knows our longevity, doctors can guess all day long, but I fully believe we won't leave this life 1 second before it is our time. What I would like to know and understand, is how letrozole reaches plasma level saturation in 4 to 6 weeks, does anyone know if that same level is reached taking 1.25 mg. a day instead? half a letrozole? there has been some research on it and now that every bit of estrogen is out of my system, I wonder if the half a tablet would keep it at bay? The reason I ask is because when I do hurt, I am getting extreme pain in my wrists and thumbs, and I'm wondering if 1/2 tab would help alleviate that. Aspirin works on that well too, but I'd rather the pain went away. Any info would be helpful. God bless and heal us all in Jesus name, amen! <3 xo PS I'm 65.
Thanks for your post and actually a big thanks to all who post here. It is true: there is comfort in numbers! and information! and stories! Mom was right: Sharing IS better! I am amazed and comforted by the realization there are so many of us out there with long (and lengthening) spans of living with MBC...already! I initially thought this was a gonna be a battle to be measured in months...not so! And this blog prooves it ! Thank you all.
I've "been around" here for 76 years and am now 11 mos into treatment for MBC: mets to bone; original dx (ErPr+, Her2 negative) was 19 years ago. Current Tmt.= Kisqali + letrazole + Xgeva injection monthly. Last scan in late Sept 2019 was clear, so next scan not for 6 months. Monthly blood work continues. Mimimal side effects, thin, patchy, wirey gray hair is my constant reminder, but small price to pay considering.
I always secretly thought I'd "receive a pass" because after my first dx my "status" was so good: (node negative, lumpectomy, clean margins, under 1 cm, Tomoxifen and radiation, no chemo. (h.m.m ? on hindsight was that such a good plan??) Faithful annual mammos, (all clear) and alternate year ultrasounds for good measure. This 2018 dx result of a very thorough ultrasound tech who saw an enlarged lymph node in R axilla and got a good pic for the radiologist! Additional reason for "earning" a pass: I was a Breast Cancer Navigator (and the resident survivor "poster child"...ha!)) at our local hospital for 5 years. I keep up with the research advances and still do occasional BC educational workshops/ speaking engagements to "pass it forward".
A big fan of children's literature as model for living fully and well, I am currently thinking often of The Wizard of Oz and Dorothy and her dog Toto. My yellow brick road is a twisty one, not sure where it leads or when it will end. Lots of Flying Monkies along the way, but also am meeting many helpful Munchkins too! I have wonderful traveling companions...am sure you folks do as well. Check out Winnie the Pooh store is as well: "...you are smarter than you think..". etc.
I found the following piece many years ago, was unable to find an attribution..maybe somebody out there knows who wrote it? I keep it in my stash of "Good Stuff" to be shared with whomever, whenever. Hope you will find it "good stuff" for yourself in some way. If so, please pass it forward!
The Years After:
Cancer is not something anyone forgets. Anxieties remain as active treatment ceases and the waiting stage begins. A cold or cramp may be cause for panic. As 6 month or annual check-ups approach (or in our case scans) you swing between hope and anxiety. As you wait for the mystical 5 year or 10 year point, (or in our case, blood work results and tumor marker levels) you might feel more anxious rather than more secure.
These are feelings we all share. No one expects you to forget that you have had cancer or that it might recur. Each must seek individual ways of coping with the underlying insecurity of not knowing the true state of his or her health. The best prescription seems to lie in a combination of one part challenging responsibilities that command a full range of skills, a dose of activities the seek to fill the needs of others and a generous dash of frivolity and laughter.
You still might have moments when you feel as if you live perched on the edge of a cliff. They will sneak up unbidden. But they will be fewer and farther between if you have filled your mind with thoughts other than cancer.
Cancer might rob you of that blissful ignorance that once led you to believe that tomorrow stretched forever. In exchange, you are granted the vision to see each day as precious, a gift to be used wisely and richly. No one can take that away.
I just love the 4th paragraph of "The Years After". I long for that "blissful ignorance", which I know is gone forever. Seeing it as exchange rather than a loss is a great way to see it. The "vision" has been a work in progress for me since being diagnosed six years ago. Trying so hard to get there. Thanks for sharing. Posted it on my bulletin so I can be reminded every day.
We all live on a permanent roller coaster but the first few months after diagnosis are the worst. But at some point your head gets round your new reality and realises that you are not going to drop off the perch straight away and you still have quite a lot of living to do. I think the brain just gets exhausted/bored of worrying after a few months.
You still have days where everything is black but for me those days got less, though came back following a recent progression and change of drugs. All starting to settle again now though.
No one knows what is going to happen tomorrow and you are still one of those people with a life that still needs living.
I had same BC diagnosis in 2000; early stage but opted for bilateral mastectomy; clear nodes and no follow up treatment. 17 years later! Mets discovered in spine, with Letrozole and Ibrance started almost two years ago.
In response to “how do you maintain sanity,” I’d say that it’s a gradual climb to some sense of normalcy. Since we all take daily meds, the reminder is there at least once a day. But eventually, the acceptance and hope allows you to live life again. I have episodes of lethargy and some back pain if I “overdo it.” But the side effects seem somehow less oppressive. In the end, instead of “Why me” you accept the “Why not me” reality of our situations.
Here’s to ACCEPTANCE and HOPE! God bless you, Alana! ❤️❤️🙏🏻🙏🏻 Linda
I was first diagnosed in 1998 with stage IIIB breast cancer,Had a bi lateral Mastectomy with a tram, Six months of chemo radiation, tamoxifen five years, Letrozole 5 years, 19 years later, I feel a little strange and was diagnosed with MBC which has spread to the lining of my long and created some plural fluid, although I’m gonna scale them out. I just knew something wasn’t right. I have not yet for the last two years had anything in my bones or my other organs. And currently the fluid of my plural space has diminished and the lining is just scar tissue. So we will see. The beat goes on and never ends but I believe there are many things we can do to stay healthy and vibrant.
1. Good night sleep is important, for me it’s about 8 to 9 hours. I take sub lingual melatonin 30 minutes before I go to bed and a 200 mg of L theanine, as well as my letrozole all which I take at night , vitamin D, and to magnesium pills. Most Nights I sleep with really well and wake up feeling refreshed and ready for the day. I strongly believe these things help with sleep.
2. Look forward to the future in a positive way, always plan for something exciting that you have is ago.
3. Walk as much as you can and move around as much as you can during the day.
4. Learned Tapping and tap what you’re grateful for each morning, I do it in the shower. You can also tap and should for all other issues, anxiety fear etc.
5. Try Juicing and eat a lot of crustaceous vegetables as well as Fermented Foods. Try to stay away from sugar and sugar and all things in your refrigerator in the house, and if you have to eat beef and all the red meats try to make them Grass Fed and organic if you have that option.
I also do the mini version of the bud wig diet. For me that consists of organic cottage cheese puréed with organic flaxseed oil, putting some fresh ground flaxseed on top and some blueberries and raspberries when I can get them in organic and on an empty stomach. I actually hate cottage cheese but I love this mixture.
6.Listen to your body! You are your best advocate and truly are only advocate and you know what’s best for you if you listen to your body. Each of us is different. Remember, you are in charge not your doctor.
7. Stress!! It’s what gets us every time. Somethings you just can’t avoid but it’s how we deal with the stress that’s the most important thing that’s when the Tapping and the exercise comes in and the L theanine is huge! You can take it in extra doses when you feel stressed. There for a while I took it every morning at 200 mg and every night right now I’m experiencing more of a relaxing time and appreciating the joy in my life as much as I can and I only have to take it at night because I know how important it is for me to sleep.
8. Lots of water especially if you’re taking Ibrance. You need a gallon a day with that drug!! Don’t forget that.
9.Now that you’ve been diagnosed with a lung metastasis, make sure you address that with your oncologist and I Brandts as there can be problems with some patience.
i am in the eighth year of the original diagnosis and fourth year metastatic, on this JOurneY.
thanks to a friend, i've kept a public journal on Caring Bridge. i write to share, to educate, to vent, to remember. i like to live in the present moment and live what i am experiencing; whether what people label "good or bad," i refer to as different, as 'this too shall pass.' i am aware that when this mind leaves the present moment, fear and anger attempt to be in charge. i like to focus on this whole person for health and wellness. i know that "a" diagnosis is the common denominator for us, and each person's JOurneY is individualistic.
I was recently diagnosed as well - April of this year. After getting over the initial shock I try to live each day positively instead of dwelling on the negative. It is hard but it really does effect your health when you let it get you down. When you think that you could die driving on the highway you realize anyone could die at any moment I’ve chosen to think these drugs we are on will help me live a few more years. Having faith helps. Take care we all have our low days but hopefully the high days are more. Z❤️
Wow! Thank you all so much for sharing your experiences, thoughts, and kind words! I can't tell you how great it feels to be part of a community (even if it isn't one any of us wanted to be a part of). It is very difficult relating to people around this diagnosis. What are they supposed to say? Most well meaning people say things like "you'll beat it", or they advise that I try crazy healing therapies (to which I think, "too late!"). I don't know that eating more blueberries or having a coffee colonic is going to improve my diagnosis.
But, all that being said - you all have inspired me to stop being passive and letting cancer have it's way with me. Yesterday I booked a massage and scheduled recurring massages every month for the next 6 months. Today I went to a new yoga studio, had a great class, and met some amazing people. I'll go back next weekend, for sure! Instead of waiting for that next scan, I'm going to control what I can with my free time. I need to keep working, and in fact, the students keep my mind off my diagnosis - which is exactly what I need. When I'm teaching and enjoying the kiddos, sometimes I actually forget about this shitty diagnosis.
I am so happy I found this place and all of you. Thank you for making me feel less alone!
I do not think of this as a "terminal disease." Years ago, there were no options for women with stage iv. I have "met" numerous women on other boards that have been stage iv for years and still work full time. Even my cancer center calls it an incurable chronic disease. Like heart patients that must take a certain amount of meds every day to stray healthy. During my time with cancer I have had some friends and friends' family members who were healthy die suddenly from a defect in their heart they did not know about, from a brain anuerism, etc.
I think there are more serious types, e.g., triple negative and such and also women that seem to get it when much younger have it grow faster. The average age, I read, was that a woman gets cancer at about age 57. So being the average person all my life, I got it at age 57!
I was diagnosed with MBC in March 2018 ( 15 years after my initial diagnosis and treatment in 2004/5) and was very sick at the time. The cancer returned in my lungs and I had several spots on my ribs. I had numerous fractured ribs too. I was in pain and pretty short of breath. After they completed all the diagnostic stuff I started May 31st on Xeloda and by Christmas I was doing much better. I had a wonderful summer at the cottage this summer of 2019 feeling almost normal. I cannot walk as vigorously as I used to, but I can do it just at a little slower pace.
I was quite distraught last year, convinced I was dying and having anxiety attacks. I checked out this website frequently and talked with the SHARE metastatic hotline volunteers regularly and those 2 resources helped me immensely. I realized that many women are doing reasonably well coping with this disease and some of them are long term survivors. I was told at the cancer centre to think of it as a treatable chronic disease, and that helped me also. So far my scans have been stable and I will likely have another one in 2 or 3 months. I did go on a mild antidepressant but I am not even on what is considered a therapeutic dose. I do believe this low dose did and does help me.
I am enjoying my life again and yes I think of it everyday but I feel that I am going to be around for a good long time and I have confidence in my oncologist. I recently attended a MBC conference in NYC and for the first time I was able to connect with real live women who had the same disease. Overall, they looked great and some had had it for many years. I found it quite uplifting. One speaker has had it for 16 years and she told us to ignore the statistics. We are all a statistic of 1. We are all so different. I just trust that with the many treatments they have out there that they will be able to treat this for a long time.
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UK based warriors, what was your second line of treatment offered after Ibrance and Letrozole?
CT scan not what I'd hoped😔
Stunned, scared, sad, but grateful and happy to be here! 
