Hey everyone. Seems everyone is so positive! I usually don’t get on these boards because I get so upset reading how people are suffering,However I need to grow up and let you all inspire me. I was diagnosed last June after 18 years. In my bones and rt. Lung. I’m a Nurse but not working. God bless you all.
My Journey.: Hey everyone. Seems... - SHARE Metastatic ...
My Journey.
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Hi Clair,
There is a godsend of positivity on this board, but people also go thru tough times and darker moments too, so you can share wherever you are in the moment. I also don’t read a whole lot of hardcore clinical stuff because I am easily sent down the rabbit hole. I’m a nurse too, but not an onc nurse thank god or I’d drive myself nuts. Took me a long time to get over the initial shock and depression Now I try to live each day fully and look for the best in things This is a great space to ask for support and share
Hey, may I ask when you found out. I guess after 17 years I thought I was clean. Yes seems like everyone here is very uplifting and positive, I like that. I’m very depressed with just finding out last year and starting chemo right away. I’m glad you’re a Nurse, I worked in Geriatrics most of my career, loved it. I wish you all the luck and continue with the positive thoughts and energy. Leslie
I was dx’d summer of 2014 Mets to lungs from get go. Like being punched in the stomach. Fell apart. Really. Did well on abraxane chemo then letrozole then Ibrance added. Stable so far... I am not the calm accepting type. Sad to say I’ve been a glass half empty girl maybe that helped me working the ER but hasn’t served me well in life in general. The hardest part has been the emotional aspect. The rest I can do so far. HellI can draw my own blood if I had to but putting myself back together mentally was and is a lot of work. I’m changing. Realizing a lot I wished I’d known all along. Some days it’s a fight to be accepting and happy and sometimes I cry. But not the days and weeks of hopelessness I had initially. I grapple with the idea of death. It was an interesting philosophical concept pre diagnosis. Now in my face. I grab the opportunities to have fun. I have a supportive husband friends and in laws. I have a dog and cat that are a joy. I work full time until I can figure out how to pay for the Ibrance if I retire. I’m 64. Just got back from Italy. Going to keep going as long as I can. I had to find the things that help me cope and live fully and besides all that I’ve mentioned I Am exploring Buddhist philosophy especially Pema Chodron an American Buddhist nun. Check out Kris Carr’s website. She has a rare stage 4 liver cancer. Her journey is very uplifting. Stay in touch!
I think being Nurses we have that born in attitude with glass half empty to full. The Ibrance for the first year is cheap through Georgia Northside. However Pfizer will not let you not go without your Ibrance. All you do is fill out a form using only your salary!! Because it’s so expensive you will most likely qualify plus they definitely don’t want you to say I just won’t take it because I can’t afford it. When you get approved they send a 3 month supply. I got my Lyrica like that, unless you make over 100k you should qualify. Check it out please. Trust me they don’t want to get sued because you can’t afford a cancer drug. Let me know!
Check out the Bible and all the healing Bible verses that are included. Jesus does love you and he is the Ultimate healer!!
Nstonerocks, reading your post has helped me. I am reassured to hear that I'm not the only one struggling at the start. I was diagnosed de novo stage 4 with mets to my left lung in early February. I too have always been a glass half empty girl. Always a big worrier. Also, most seem to have mets to the bones. There's not a lot of information about lung mets. At my last appointment my oncologists put me off ibrance for a second week break because my neutrophils were too low. When I ask her if my breast tumor would shrink completely, she said she didn't know. I know it's early in my treatment but I left feeling like I will never be NED. So I've been a bit depressed lately. Guess I'm still having a hard time accepting my diagnosis. The last few months I've spent a lot of time crying. I hope I can eventually stop that, adjust and find enjoyment in life again as you have.
Dear Mcap
Most of us will not become NED. I pray to remain stable as long as possible. When I started Ibrance I too had to stop for 3 weeks when my counts fell. My body adjusted and since then my counts are good enough to stay on it. It is a rollercoaster ride and a total upheaval of how you thought your life would go. Everyone has different needs but I would encourage you to call the SHARE helpline. They will match you with a peer in your clinical situation. I called it 3 times when I was at my lowest and it helps to talk to someone who is traveling your path and has been on it a while. I also am in therapy and on a low dose antidepressant. I’ve been on and off those most of my adult life anyway. When I feel my panic escalating I take Xanax. I rarely take it so it but good to know it is there. Remember you are more than your diagnosis and although your life has changed and you have this scarey diagnosis to deal with, seek out things that lift you up and connect you to life beyond Cancer Reading travel outings with friends. As you read in my post Buddhism is a comfort to me especially Pema Chodron. Find what restores and comforts you—yoga, a hobby, hiking in nature? The first 2 years were just awful emotionally for me. I initially wanted to just not wake up. With help, and as you continue to find your way living with this, it will get better. I still have bad days. I don’t think there’s anyone here who doesn’t. But I’m better at handling it and moving past it. Feel free to keep in touch I am more than happy to share, as are all the great peoples le in this board.
Thanks so much. Yes I’m not even in a year and Chemo, Ibrance mood swings, hair loss and to my pleasure 😇 no sex! Sorry had to say it, the hormones are going going gone. My husband is not as happy 😃. Other than that it’s going good. I know Ned is hard to achieve but staying positive. I will start to work out again but I’ve lost over 20 pounds so mostly to get stronger. You sound positive energy and that’s great. I think when it all settles in I will be fine. Leslie
That kept me away from the internet too. But I was lucky to find this's site. Everyone tries to help by listening and sharing there experiences. It gives my such hope to think I have lots of time yet. We share treatment plans and learn a lot. The best is to know I am not alone.
For what it's worth, I've had MBC for 4 1/2 years and thanks to Ibrance and letrozole I've been stable for the last two! Since my original dx of State IiiC, in 2009, I've set goals for myself. I wanted to be around to see a grandchild (I have two beautiful Granddaughters now) and to see my baby graduate from high school. My new goal is to see my Boo graduate from college in two years! 😁💖 I've also found comfort in my faith, family and friends, and collecting happy thoughts. Thoughts like the first time my granddaughter said, "I yu you gamma!" (I love you Grandma!), the way my mom gets when she's with all 6 of her sisters. I swear they're worse than a bunch of teenagers at a slumber party! 😂 Hugglies and loves for you! Blessings!! 💙💖💚💖💙
Wow lucky you with having wonderful grandchildren and family! My only son wants to play the field so I guess I’ll miss out on that. You sound so strong and a beautiful person. I had a small family so just my son and husband, we met on Match after my husband passed away. With that I inherited 4 sister in laws, yeah like me they are in medical field. So 2009 you went to mbc. May I ask where you have it? I just started the Ibrance so far it brought index down to 427, my oncologist calls me every week and I see him twice a month. I’m so glad you wrote me. Let me know how your updates are going and how you feel. Thanks again Leslie
Hi Clair! I was dxd Stage IV in 2013 with mets in T11 and my liver. They did kyphoplasty on T11 where they used radioablation to clear things up and then filled in the gaps with this cement like stuff. Chemo took care of the liver mets. Since then, I've developed mets in my sacrum, coccyx, pelvis and in the distal end of my femur. More chemo then they removed the end and replaced it with some kind of apparatus. That was kind of annoying because my knee had been bothering me for years but my local doctor said it was bursitis. Surprise! 😁 lol!! I think that's all the mets? Oh, yea. There's a couple more vertebrae, too but oh well. And yes, I do feel blessed to have a big family that includes 2 brothers and 50+ first cousins. When my grandma passed years ago she left more than 200 direct descendents. 💖
I have not been offered surgery on spine, probably because so many places. He told me yesterday that not all nodules are cancerous. I don’t have to go back for another month! Yeah😃. Blood work was fair and he told me I don’t look as if I have cancer, what ever that means. I guess I look healthy, wish I could feel that way. Anyway hope you have a great weekend with your wonderful family.
Oh you have such a wonderful family and such great examples of how to live life. Couldn't resist interjecting here. Maybe we should all be setting goals for ourselves as you do. I am sure with all the current and promised Cancer meds available you will easily make that graduation.
Cheers, June S.
Forgot to mention, I heard on the radio this morning, that this year is the 40th Anniversary of the Terry Fox Run. This has raised millions of dollars toward Cancer research. The interesting fact is when Terry developed his Cancer back in 1980 he apparently, only had a 15% chance of surviving that Cancer. Today due in part to all that money and research it is an 80% chance! What a great legacy from a remarkable young individual with a vision.
It is the same for many Cancers including MBC. The chances for survival and perhaps even one day some cures grows every year. Just wanted to add this to say our hopes are not in vain.
Cheers, June S.
Clair, if that is you in the photo, you look more like a model than a nurse to me! Really gorgeous! One of my early decisions was that as long as I have hair, I am going to have fun with it! I've changed color, length, style. Now on to the real cancer stuff! If you are saying that these mets are a recurrence from 18 years ago, that bodes well for this being a v e r y
s l o w growing cancer and that may make it easier than many to get under control. One of the women I've known personally who lived the longest with mbc had lung mets, 13 years She and I have seen the same onc and both the onc and I think she would have lived longer but about a year before she died, her 31 year old daughter died suddenly and unexpectedly from a brain aneurysm and that devastated her and her whole family. She really lost her resiliency and will to live.......
I was diagnosed with bone mets from the get go 14 years ago and even then heard of women living 10, 15, 20 even 30 years with mbc. Yeah, it's like a major body slam to get this diagnosis, but some of us do remarkably well. There are aspects of living with cancer that we can't control but there are things we can control, too. LIke keeping appts and taking our meds and doing those things that give meaning to our lives. As a nurse, you probably know people who know people and can find out about the best place to go at the shortest distance for a second opinion. Comprehensive Cancer Centers are the top tier of cancer treatment centers in the US and they are listed on the website of the National Cancer Institute. They have specialist oncs who study bc, do research and treat patients. I didn't think I really needed a second opinion when I was first diagnosed but my own local general onc suggested it and so I went along with it and it turned out to be really reassuring to my husband and grown daughter, who went with me. That onc looked me in the eye and said "you are not dying, you have years, not months......." and I could just feel my husband and daughter relax and let go of some of their worst fears.
One thing that has helped me alot is finding the humor in this whole thing. I find it a bit silly that I walk into the waiting room at the cancer center and I am among the healthiest looking people there--my color is good, and I have my hair and am not using a wheel chair or cane. And I'm the one who has "terminal" ca! And I've pulled "the cancer card" a few times--not often but I was able to order a wonderful leather jacket for my husband for Christmas one year even though local retailers were sold out by calling the manufacturer who told me they don't sell directly to customers, and I told him that I have advanced cancer and it might be my last Christmas. The jacket arrived the next week and my husband loves it! That was the first Christmas after I was diagnosed. I have found that the first year was definitely the hardest emotionally! I've really worked at living in the present! And I decided I had to make friends with needles! That's a long story but I have gotten so comfortable with needles that I can watch them go in, something I never thought possible. Just a small step to make this life with cancer and cancer treatment a tad easier.
I really have not had physical suffering with this cancer. I've had more trouble from a broken ankle from a slip and fall on the ice, and not at all cancer related.
Your journey will be yours! Each of us are dealing with a unique cancer and our own set of circumstances. I hope that as a nurse you have seen the improvement in end of life care and how well pain can be managed for patients. I've seen that as a family member, hospital chaplain, and close friend. I am not afraid of death or dying, but I am sad about the thought of leaving my family. Which is a heck of a lot better than not being upset at the thought of leaving family and friends to grieve!
Dear PjBinMl, I enjoyed your post story so much I read it 3 times...And not because you mentioned I look like a model, lol. Yes that’s me before my hair started thinning and I could get a tan. I’m near Atlanta so I go to Nothside Of Atlanta it’s a chain 5 min from my house. I got my Doxil there and they even give me my Ibrance for a co pay. Yes my first year it’s very hard. However my son is grown and my husband works from home so I have it good. The hardest is breathing, but like you I won’t use cane or o2 to proud. I know this sounds selfish but my skin was so bad from chemo I went and had Botox.👍 My husband does not know, but it lifted my spirits. You sound stronger than me, I love your outlook on life. I’m sure I’ll get there with knowing you are so strong and great attitude. Please keep in touch and let me know how your doing. Leslie
Yep, gotta have my Botox! I edited two weeks to begin my EyeBrain treatment so that I could get Botox! Hey I figured, if I have to go through this after 20 years of remission, I’m going to look as good as I can. My husband is 11 years younger than I am and I will look in the mirror and feel that I can look as good as I Possibly can. My oncologist at Lumbardi Georgetown said that women get Botox all the time. They just have to take a break and be off the medication with good neutrophils for three days before Ibrtance starts again. I was diagnosed with metastatic BC in December 2017 after 20 years being in remission with an aggressive stage III. So it’s an aggressive estrogen-based cancer still, yet it only spread to the lining of my left lung. I have begun doing tapping which I find to be very comforting but also have tremendous powers of healing in different ways. I try to remember to do extremely deep breathing throughout the day because it can change your cellular activity. Imagery is also really important although honestly I often get caught up in the day to day activities and worries with my children and forget to do it. I’m not the most disciplined person but I’m working at it. I’m interested in looking in to the Buddhist philosophy is that one of the other ladies mentioned earlier in these posts. I have dramatically change my diet and I’m working hard to stay off of sugar which is in in just about everything we eat! But its Not as difficult as I would’ve imagined and I love my crustaceous vegetables and predominately green diet with some wild fish only. My fluid to decrease by more than half in the first couple of months even before I started any of the medication. I’m not a fan of taking I brands but I’m trying to be a good patient. I’m on the middle does now and just began my third month So I have yet to have my CAT scan Or bone scan repeated.
The one thing I’ve learned dealing with cancer of the last 20 years is that you have to be flexible. What you know today is not necessarily going to be your truth tomorrow. That’s supposed positive and negative information and life so you have to be flexible. I think most of us have planned or funeral within her mind at some point during this journey. But the challenges planning our lives in the interim. Our families bring us back and away from her cancer in joy and stress and a diversion it’s called life. I to once again with this metastatic diagnosis have been concerned about traveling but I realize that is silly because I have to enjoy , Just like everyone else doesn’t have metastatic disease, my life. This past weekend I pulled out my Venetian glass wine glasses to serve at dinner with my children. Why are they in my China cabinet because I’m afraid they’re going to break?! I find great comfort and connection with my other sisters on the site and I am grateful for that. Gratefulness needs to be part of our thoughts if only because it takes the place of negative thoughts which we need to replace with as much positive this we can. A personal mantra could also be of help. So that every time all those negative thoughts come in, you replace it with a strong affirmation of who you are. That carried me through my first diagnosis and I’m working on it again.
Well we have so much in Common. My husband is also younger than me, we had the same 17 years from first diagnosed. You mentioned Georgetown, my cousin is a Priest and taught there for 25 years. He even has a wing named after him, he is semi retired but now is in Virginia. I was diagnosed stage 2, radiation then forgot about it till last summer. I have the plural effusion too in rt lung with nodules. My Mom was 29 when she was diagnosed. I’m Her2 negative and started Ibrance. Can you please explain more about Ibrance and Botox. I was on Doxil when I got mine 3 months ago. I enjoy hearing from you. You are more disciplined than me. How many children do you have? Thanks again. Leslie
It sounds similar! I was stage 3 with small. less than a centimeter, aggressive tumor and 7 lymphs taken out positive. I had a bilateral mastectomy with a tram and I then had 6 months of chemo, 5.5 weeks of radiation, 5 years of tamoxifen, 5 years of femura (letrozole), then just followed for the next 10 years. My mother, grandmother, and maternal aunt all also had same cancer 42, 42,48. I was 48 first diagnosed and after a summer of 2017 in stress and worry over a friend dying (she didn't!), my cancer started acting up again with with nodules creating the left pleural effusion. I have no cancer anywhere else at this point. Just an unusual finding all of this and glad I got on it. I am now on letrozole and Ibrance only. I take the letrozole at night which makes you a bit drowsy so that is good right before bed. I take the Ibrance after a big meal in the earlier part of the day.
My cancer was right breast-lymphatic system--who knows!!n I am now 68--where did that time go!! My husband is 57. I have 4 children, 38, 28,26,22. Yes, I was 45 when I had my last child!! That estrogen was the culprit.
I see Dr. Warren at Lombardi and he has followed me for most of the time. My original med. oncologist was Dan Hayes, #2 in the world and partnered with Mark Lipman. They were responsible 20 years ago for discovering and studying the HER2 and herceptin first at NIH then Georgetown for the study. When they left Georgetown, I was assigned to Robert Warren whom has been studying nothing but breast cancer for 43 years. So, I am in good hands as far as that goes.
He told me that many of his patients get Botox. The take a break, not sure how long, get it and begin again. I had mine right before I began Ibrance. He told me that I had to wait 48 hours before I could begin the drug and of course my neutrophils had to be up. This was not a problem as I had not begun the drug at all. I waited a week to feel safer with it. I also had fillers at the time. I will do Botox again, maybe in the fall when I begin to look old again! I will have my scans probably in June--I have not decided yet. But, no hurry to have the radiation!
I’m 62, I had a facelift, Botox, And fillers plus my lips done. However with my mounting medical bills I just get Botox and facials. I know vain, my husband is 55, but we look the same age to me. 😆 My Mom was the same and lied about her age, like I do lol 😝. Anyway thanks for writing and continue the good work at staying positive and beautiful.
Yes, even though my husband is 11 years younger than I am, we pretty much look the same age. I have to give credit to my Italian genes. But then we all get dips in our age appearance and for a while then I feel I look older. Others don't say so but can you believe that!!
For the past two days, I have been struggling with a new purpose, not sure what that is. I feel alone on this path, because we all are. But, I have never felt alone before--or maybe not since before my first child was born 40 years ago.
I have owned 3 businesses in my life but I have focused half of my life on raising my amazing 4 children. So, now they are amazing and my youngest will be attending George Washington Law in August, so my job is basically done. I have no grandchildren and the possibility of that in the next 4 years is slim.
I think I need new direction, new hobbies, --I don't know. i realize now that when my husband wants to retire, I will be at least 78 years old and that is assuming I will still be here. I am not one to be depressed but I think I am now and have to figure this out.
My Uncle got his law degree from Georgetown, congratulations to your son.My Uncle actually is known for breaking up Maw bell, if I spelled that right. He passed away last year but I stay in touch with his daughters. I live in Atlanta they are in Washington, so we Facebook. Why do you think you are so down now? Do you think because our hormones are getting whacked, saying from Goodfellows! lol 😆. Your job will never be done!!! Just ask your babies, in the South we call our grown kids our babies, not to my sons liking.Maybe your bored? My husband works from home so I have him here, I don’t know if that’s always a good thing....What do you like to do? Are you up to maybe volunteer somewhere? Hospital, Nursing home. I did that before I started chemo, then got to weak. At the Nursing home they beg you to just talk to them, read or just take them out for a walk. I think your just in a small slump, thing what we are dealing with. People that are totally healthy go through slumps and have no idea how lucky they have their health. Keep me posted please on how your feeling. We live 3 hrs from Savanna so I look forward to going this summer. I will check on you tomorrow...Thinking of you Leslie
I doubt that my hormones have that much in play these days at 68!! But that nasty estrodial obviously is still in play!
One of my two best friends is from Atlanta and currently has a residence there! They also have a home in Highlands which they are finishing building/decorating now. I am planning a visit in July. Their apartment is on PeachTree Rd and is ridiculously amazing and massive. Maybe if I come to Atlanta first for a day or so, we can meet. That would be fun! And my dad was from Texas, so I do understand the south!
I think I just recently have been reminded how many years my husband and I are apart in age and how the different decades we all, by right, are in different places in life. Cancer return and the way the medical field describes that stage 4, call it what you want, its the same thing, is disturbing and too doom and gloom. The truth is, and I've always known this, cancer was never cured but always in remission. But they make it sound so different now. I understand that once it returns, cancer finds it easier to work around our immune system but that does not mean it cannot go into remission once again. Is the fight really much different? I don't think so but most of us forgot how much thought and lifestyle has to be put on the forefront after so many years. And YES, getting so much older coupled with this diagnosis, makes us reevaluate what is important in our lives. And then finding, outside our family, how we want to spend that time. I have spent all of my efforts on my family and although they still need me, not in the same way. So, what does Bonnie want to do with her time? I am reminded that I am an extrovert so I need to get out there and out of the house once again!
Sounds like me,the age difference can make a difference, even though it’s a 7 year difference between us. Your friends live in a very nice part of Atlanta, unfortunately I’m about 50 miles south, of Atlanta.Griffin where they film TWD. I have run into a few of the actors in stores. That sounds great I’ll pray it’s not around our Savanna trip. With Atlanta traffic where they live to me is about 2:45 hr drive. We could always meet but I don’t do Atlanta by myself since I’ve been sick. We will try to make it work, sounds like we could talk for hrs, just a feeling. If you don’t mind, I know sex is a big problem for us right now. I’m thinking that’s normal but Paul is very sexual. Before I got sick after 8 years we still had sex twice a week, now he’s lucky every month. I have no desire, but he also since I was diagnosed had to go on more b/p meds, so that sorta helps I hate to be like that. I always tease him when I go out to make the best of that time...😂 if ya know what I mean.. Sorry to much info... But I also thought at my age hormones where dead, but not true. My Grandmother still had a period at 66! I swear, I had a hysterectomy at 37 but left ovaries. I developed early was a D cup at 13, ended up triple D. Had a reduction 2 years ago, now my boobs look 30 and I lost 20 pounds 123. If I could get my face to go to 30...lol all the Botox and fillers won’t go back that far. Anyway I hope I made you feel some better, wow that’s the South coming out. Have a good rest of your Sunday.
God bless you, too, Clair! I also had a recurrence 17 years after initial diagnosis (2000-2017), with mets to spine and hip. Not sure what your treatment protocol is, but it, for me, has become more manageable as time goes by. Also, the "health grief" has subsided from the initial shock that "life will never be the same." Please know that you are among a wonderful group of supporters, all of us in similar boats. Prayers to you on your journey! Linda in Seattle
Thanks for your wonderful words. I was close to your first occurrence. I started on Doxil 6 ago, now Ibrance and Anastrozole 1mg. Sounds like I got into a wonderful group where you all know how we really feel. I hope you’re doing good and does your oncologist do cancer index? Mine went from 817-427. That’s ca27/29. Thanks again for responding. Leslie
So, is time, once again, the healer for the health grief? It usually is and I find myself on the roller coaster ride that cancer puts us on. So, right now, I am feeling discouraged about future life. I hate this, not my personality. any ideas?
Hi, blms! I think that time, at least for me, just allows you to adjust to "your new normal" and accept the side effects as they occur. I'm not sure if the roller coaster ever stops, as you eventually do accept the fact that there is no cure for Stage IV. What gives me the most hope is the availability of new meds and the continuing research on this disease. That, and considering each day as a gift. God bless you!! XXOO
I want to thank all you wonderful people for responding to me. It has lifted my spirits and feel so much better. Not feeling sorry for my self today. That’s a great improvement. As Nurses we read so much into something that can be so simple. Sometimes because you’re a Nurse some people think you know more. I’m glad most everyone here knows way more than me.👍 Thanks again for the encouragement and love reading your thoughts and stories. I feel alive. God Bless you all! Leslie
Also, similar to you, although never practiced in a hospital, I went to U of Pa nursing back in the day. I spent most of my life working with doctors in offices and taking care of my family growing up with cancer in most, etc. So, here we are! For me, I refuse to allow any doctor to take control of me. There are choices and we can individually make them. I won't let anyone take all the power away. For me, it is important to be in charge of my own destiny. And that includes this cancer. I believe that with lifestyle changes we can once again go into remission and that is my hope and prayer.. So, I do everything I can from an alternative respective.
I also am grateful for this site. I, as most of you, was very distressed (not that this is gone) and knew I needed to find a source of communicating with other women who were at least at negative of a diagnosis But doing well. Here we are, sisters together in this journey.
Does anyone get days where there scalp hurts so bad you can hardly touch your hair. If I massage whole head, it really hurts but feels better afterwards. I am keeping track now to see if it is on the week I am off Ibrance.
I know you posted this 2 months ago. One of my google moments led me to this post. I get this scalp pain that almost feels like someone is subtly pulling my hair at the back/top of my head. It’s about 5 months, comes and goes.
Yes that is how it is. I started Faslodex in March 2018 and it is not happening much. Also my hair thinning seems to have slowed down. Hope it stops. But after three months on Faslodex my markers dropped a little. Now this month they are going up again. My shoulder is hurting. I will have a pet scan next month. I asked my doctor if they can do radiation again to relieve the pain. She said sometimes they can if it was not done in that area last time.I just hope she can get it under control again.