Diagnosed BC 2004. Recurrence 2014. MBC dx June 2018 via body scan. I suppose I’m fortunate in that I currently have no symptoms. But I’m very frightened of how and when that will turn. Right now, Ibrance makes me feel tired all day long. I’m finding it hard to get out of bed, the house, etc. I find a way to do so, but it’s so challenging. I see a counselor and exercise, etc. but I’m really in a rut right now. I’m terrified reading about the pain so many of you are enduring and send my prayers to each of you. I am in need of some kind words for myself and ask for your grace.
Feeling sad: Diagnosed BC 200... - SHARE Metastatic ...
Feeling sad
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•
I am sorry that you feel so sad. It sounds like you are doing everything right. Getting out talking to someone exercising etc. I was diagnosed with mbc in 2016. I was on Ibrance for 2 years. Yes it does make you tired. But as for pain some people have it and some don't. That does not mean you are going to have it. Maybe you are just hitting a down spell. We all get days or weeks where we wonder why me. It is natural to be sad sometimes. Just remember you are here, this is a slow moving cancer. New meds and treatments comping every day. I hope you feel better soon. I will be thinking of you.
Hi there
I’m having a bad day and feel sad and sorry for myself..the day started ok..tried to do a few yoga stretches but felt weak so went to see my horse..as I wasn’t in pain at that point I got on and went for a ride..well after 20 mins the pain kicked in so I came back in tears..poor horse wondered what was going on..it took all my strength to feed him put his rug on and turn him out
So fed up..I just envisage worsening pain and a crap life
Sorry I’m not any help to you whatsoever.. but at least I’m not the only one whose feeling sad
Barb xx
Barb
I think it amazing that you do yoga. Plus the fact that you have the energy to ride a horse when you are not feeling well. I am sure it is not easy to get on and off a horse. Be kind to your self. I am sitting here reading post because I am trying to get the energy to get in my car and check out wig shops. I will probably be having IV chemo soon. So please be proud of yourself for starting your day in such a positive way. Just hearing it is making me push myself out of this chair and check out those wigs. Be kind to your self the rest of the day.b
Hi there
The yoga and riding I did before this mbc is a bit different to what I can do now but I’m trying to get back to somewhere near how I was but maybe I’ll have to accept the new normal..getting on and off my horse isn’t a problem..he’s 16.2hh so I use a mounting block to get on and just chuck myself off afterwards lol
All the best to you
Barb xx
Well I still give you credit for getting out there and trying to keep life normal. Hope the rest of your day is peaceful.
I still did not get to wig shop. If you don't get on highway early traffic is horrible. Well maybe tomorrow.
Cancer Care will send you a wig for free! Just call and request one. In the US.
Thank you I am going to check this out today!
Thank you for the information. I called cancer care and made an appointment for Nov 28th. She said they will help me with a wig and it will be free. I love this site everyone helps each other.
Oh good! I'm glad!
American Cancer society has free wigs, hats and scarves. Go to one of their offices and they will let you select what you want. They also have Look Good Feel Good classes that teach you how to put makeup on, wear wigs etc. It was a fun afternoon. Blessings, Hannah
Ok, I found my cancer care office, not real close to me but I have an appointment for Nov 28. She sounded so nice. She will show me wigs and how to put on. If I find one I like it is free to me and I will take home. I will check out some of there other programs while I am there. How to cope with hair loss, makeup lessons, counseling. Thank you for the information.
Check and see if your area has a Cancer Services or cancer related support group. This is where I found my favorite wig, even after I purchased one for $250. Good luck!
I will check into this thank you.
Anyone remember what that hair puce company is that some if you mentioned? I want one
• in reply toBarbteeth
I’m so sorry Barb. I know from your posts how important riding is to you. It’s your reprieve and something you are good at. It is so frustrating that today is a problem. Being an active person is how we recharge and having it limited is another kick in the gut. I am praying that your next ride is better.
Barbteeth• in reply to
Hi there
I’ve been for a shiatsu massage this afternoon and feel relaxed and pampered despite blubbering when I got there...just nice to feel cared for
This is the second massage I’ve had so time will tell if it helps with pain..she did suggest I ride with longer stirrups..perhaps I should go western!!
Thanks for your lovely post
Barb xx
My 2 cents...Don't go western. Think about the bouncing and what that will do to your spine and the recent surgery.
With riding English you could shift your exercise routine to a new focus - strengthening your legs with circuit weights and your core with a little pilates to help take the pressure off your back when you ride.
Perhaps, maybe this new muscle group focus will eliminate the pain which is probably a big part of feeling tired.
Also, perhaps making a 22 gram protein drink and taking an additional protein snack with you to the stables can provide the energy support you need in your new normal.
When I was working back stage concerts doing massage, my preparation was similar to my above suggestion. The endurance I would need was far more demanding compared to my regular house calls that I could schedule at a far slower pace.
I would need to work sometimes 7 hours straight on heavy metal musicians who all needed deep tissue trigger point work. At 52 in 2010, I had to prepare for that level of endurance.
So I'd say adjusting to your new normal can be a positive and exciting challenge if you look at it like preparing to win a marathon.
Hi there
Thanks for your input..you’re probably right about western riding..I’m used to an English saddle and I have a dressage saddle which I might try for a bit..pain is in my shoulders..only after I had a vertebraplasty 6 weeks ago so I guess the assault to my body has resulted in messing up a new group of muscles..maybe I’m impatient..also I have no sympathy at home
Barb xx
Well you have sympathy here.
" I guess the assault to my body has resulted in messing up a new group of muscles" yep your right.
That's because your shoulders have been compensating as a reaction to protect your spine.
Breathing exercises while you ride will help relax the shoulders.
My feeling is they won't relax until your legs and core pick up the work that your shoulders think they need to take on.
Also, on the flip side, metaphysically speaking, from the Louise Hayes book "Heal Your Body":The Mental Causes for Physical Illness and the Metaphysical Way to Overcome Them.
I acquired the book years ago in the 80s when I started my massage practice.
Here's what it suggests for shoulders:
Shoulders: Probable Cause: Represent our ability to carry our experiences in life joyously. We make life a burden by our attitude.
New Thought Pattern: I choose to allow all my experiences to be joyous and loving.
Something to think about.
You have my total respect for continuing to ride!!!
Solider through the challenges, Rome wasn't built in a day.
It will take time for your new normal to be embraced by you and your horse.
I can't wait to hear all about it!
Oh thank you for that..cheered me up..I really have been thinking of stopping riding altogether but I will soldier on as you suggest and will try the breathing exercises while on board
I have started some basic yoga in the last few days and I try to strengthen my leg muscles..just 8 months ago I was driving a big horse box and competing..how things have changed..bastard cancer!!
Barb xx
Dear Marthasvineyard
You are relatively new to this diagnosis, so your feelings are so normal. So is the fatigue from Ibrance. How are your white cells doing? Do I discuss your fatigue with your doctor? When I was diagnosed, I fell apart, and if you care to read how badly I was doing emotionally, search my posts. . I’d like to tell you I had a revelation or incredible encounter that turned me around, but really I got sick and tired of being scared and morose. If I had years to live, I didn’t want to live every day like it was my funeral. I have lung Mets. Never had pain except the discomfort from letrozole. Went thru chemo, and now hoping the Ibrance works a long time. I hadn’t flown in decades because I was afraid of flying. Now that I have proof I am mortal, I have flown all over the place. Planning a trip to Scotland and England for the summer. I get tired too. I nap if I can or if it’s after work I try to stay busy so I don’t fall asleep too early. I work at a school. I never had my nails done or went for facials or massages before. I do now. I have dark days and cry once in a while. I am on an antidepressant and go to therapy. I find comfort in Buddhism, new to me, and try not to sweat the small stuff. I am type A, so that is an ongoing process I realize I’m talking a lot about myself. All to tell you, things will level out, although this life is a rollercoaster and best to fill your life with supportive, life affirming people, things and practices to lift you up. What is your passion? Find a way to spend time on it. Make sure your day is not all about Cancer. You are Mathasvineyard, not some disease. Talk nicely to yourself and give yourself credit for surviving all you’ve been through. I do meditation, which is amazingly calming and centering. I recommend Tara Brach, check out her site and books. Also for a boost and pep rally for your spirit and soul, Kris Carr. She has a stage 4 cancer and is a wellness champion. Lots of great info on her site and she also has meditation tapes. I feel much better drinking green juice. Mostly a kale blend for me. I Also take chaga mushroom tincture. Kris talks about mushrooms and their medicinal powers this week. Of course, tell your doc. I do and I haven’t been told don’t do it. I vege out with magazines that are beautiful and calming. One great one out of the UK is Breathe. Expensive, but like a yoga and meditation class in a magazine. Pema Chodron is an American Buddhist nun with many books and U Tube talks. You may find her soothing and centering. I am not an old hippie chick but might become one now!!! Never paid as much attention to my stress and type A habits as I do now. Not good for the immune system. I hope I haven’t bored you. Welcome to this amazing community of super heroes. 💕 They will carry you on days you don’t think you can do it alone. 🙏
JoyBe• in reply to
Damm Good feedback Nrocks !!!! I'm saving this post! Couldn't have said it better.
Dearest Martha!
Please know that the exhaustion subsided for me after a few months on the Ibrance regimen. Are you taking any other drug with it? I believe that your body adjusts over time but it needs LOTS of rest in the early months. I used to take afternoon naps that would turn into three hours. But had much more energy a few months in.
I’ve been on Ibrance, Letrozole, and a monthly injection of Xgeva (which was recently changed to a 3-month injection) for exactly a year. Be patient with your body. God bless you. You are in my prayers! 🙏🏻❤️🙏🏻❤️ Linda
Dear Marthasvineyard,
I’m sorry to hear that you are sad. Sending love and hugs! It sounds like you are doing all the right things to care for yourself. Everyone’s journey is different and some women that have MBC don’t experience pain. When I was diagnosed in March I was in a lot of pain and could barely function. I am fortunate as my treatment plan is working well. My tumor markers at at 14, I am no longer in pain and I’ve gone back to work full-time. There are days that I forget I have MBC. Like you Ibrance makes me feel tired but it is usually alleviated after I rest.
Do you live on the Vineyard? I used to live on Nantucket. ❤️
• in reply toWintervt
Thanks. I don’t live on the Vineyard but visit occasionally in the summer.
Dear Marthasvineyard,
I too am sorry you are feeling sad but I think that is just a stage we all have to go through. For some the stage is longer and for some it is shorter. For me, it didn’t last long. As I’ve gotten older I have realized that worrying about tomorrow takes away from the enjoyment of the day that you have today. I examine my worries. Can I do something about them? Do it. Is it something that I can’t do anything about now? Put it in a box and check it in a week or two to see if anything has changed. If not, it goes back in the box. Visualizing the box helps.
I do have pain, but I fell twice in 2 months from stupid accidents, once sliding down my son’s narrow stairs because I was wearing socks on carpet and placed a foot wrong, and once going down a kids water slide on a vacation with grandkids and landing solidly on my behind. Those falls resulted in a T-10 and 12 compression fracture which resulted in the most awful pain I’ve ever had. But finding those fractures which were due to bone lesions resulted in finding my MBC. Before the falls I would have said that had no pain to speak of. Looking back I did have some rib pain but I had chalked it up to being 70 and building a wall by myself with heavy cement block. If I hadn’t fallen my cancer might still be hiding, so for that I think I’m grateful! If you have no pain now and you are careful not to injure yourself, you can probably go many years without pain, so my advice would be to tuck that worry into a box. When and if you do develop pain, your doctor will help you deal with it. I think the one thing you can do is make sure you are very comfortable with your oncologist and that he or she understands you. That was my lifesaver. My primary care doc was very stingy in doling out pain medication. My oncologist was someone that I liked and who I’d seen for 5 years with my original breast cancer diagnosis. He took one look at me and said that before we did anything, we would have to treat the pain. I wanted to cry and hug him both at the same time!
I have 4 grandchildren that are age 7 to 3. My goal is for them to grow up knowing their grandmother as a woman who does stuff with them. When they are old enough to think about it, I want them to realize that I did that stuff with cancer and didn’t complain or cry. I want to be an example of living with grace. However, if I need an extra nap, I fit it in! I was tired at the beginning of this also. Radiation made me tired, the Ibrance made everything taste funny for a while. But all that is receding. If I sit, I tend to stay sitting, so I try not to sit unless I’m really tired. In the beginning I planned my day for one main activity and rests before and after. Now I pretty much go all day even though I am still on pain medication. Everyone is different so no ones story will line up exactly like yours. But we are all here to cheer you on and give you examples.
I went back to read your note and you said you have a hard time getting up because you are tired. Are you getting a good nights sleep? If not, see if you can get someone to fix that. I meet friends at my local coffee shop every morning so that gets me out of bed and going. Without that I think I’d be in bed much longer! Find something that you want to do each day. Reach out to friends, go to lunch, get together to work on a hobby, research that trip that you are no longer going to put off, do that kind deed for a friend.
I’ve gone on long enough! It’s 1am and my alarm is going of at 6:20 so I’d better go to sleep. Tag me if you want to chat.
Elaine. On the other side of the country...Oregon!
Marthasvineyard, sorry too that you feel sad. I send you a virtual hug and prayer.
I can see others here are giving good input 😘
I can’t really offer advice, only that I was just diagnosed 11/6/2018 with MBC (had a pet scan due to increased tumor markers - original diag April 2015) and I can relate bc I’m terrified. I haven’t begun treatment yet but my original is clearly in my memory. I could not function. I’m first afraid that the new treatments won’t work and if it does I will have no quality of life. I have and amazing husband & family. I have not shared with any friends yet. I know once you share they never look at you the same. Have you shared?
• in reply toPrestonParker
I’m sorry. My family knows but I decided only to tell around 8 select friends. From research, I learned that folks are gobsmacked when they hear about MBC and either don’t know what to say, or say the wrong thing. They look at you like they’re surprised you’re still upright. I don’t want to be looked at as the “walking dead”. If/when my health obviously deteriorates, I will share. I made this decision back in June when I was diagnosed and it’s worked for me so far.Theyve respected my confidence too.
Red71• in reply to
I notified everyone about my diagnosis except really close friends and immediate family via email. I told them I would welcome phone calls as long as they didn’t cry. I was insistent that I did not have the strength to console them about the news! They have all been awesome. I made a point to update them via email so they would know when I was feeling better. Many brought food and made short visits while I was home bound from my fractures and radiation.
• in reply toRed71
I’ve found email is the best way. I explain how hard this news is to report and ask that they understand why I go that route. Several said they’re glad I did because it’s sad for them to process too. When they ask what they can do, I lovingly say “the courtesy of your time and affection.” Folks seem to like that.
Hi!
I am similar to you. Dx bc in 1999. Recurrence in 2001. Dx mbc 2013. Still doing well. Ibrance is hard to take. I couldn't. So many awful side effects. I switched to Kisqali and decided to go off it after about 7 months and i became NEAD. My tumor markers started going up so i started on Verzenio a few months ago. Big difference. No side effects except bad diarrhea which can be controlled with imodium.
I feel like i have energy again!
Best wishes, Missy
• in reply toMissyAnn68
Is Verzenio the sane as Ibrance or used when Ibrance isn’t effective?
MissyAnn68• in reply to
Well i believe Ibrance, Kisqali and Verzenio are all sister drugs. They didnt fail me, i just couldnt tolerate them. I ended up in the hospital overnight with Ibrance. I had neutropenia and pneumonia. Kisqali tore up my stomach/digestive and the fatigue was horrible. I ended up having my gallbladder removed.
Ive been on verzenio for almost 3 months. I have scans in dec. I hope its working!
Buffwright• in reply to
I understand that It’s similar, but is different enough in its mechanism of action that it can be used when Ibrance isn’t effective. Apparently the efficacy median for Ibrance is up from 24 months to 34! I’ve been on it for 30 and am counting on being one of the ones who pushes it out further!
I know each case is different, but I have not had any real pain from Ibrance. I struggled more when I was on Tamoxifen. I have some achiness with the Zometa infusions, but nothing compared to the pain after IV chemo and Neulasta shots. Hang in there. I too was quit worried ready all the horror stories of Ibrance, but I have faired well. I am on my 10th cycle of Ibrance and I hope it works for a long time to come. First diagnosis bc 2007 and mbc in fall of 2017.
I send prayers your way and a big hug! Love Marianne
I was dx 7-2012 by 12-2012 pet scan mbc. Been on on the standard drugs and was on ibrance and faslodex for 2 yrs. I know how you feel and not being able to keep up with things. Try not to let things get you down. Breathe and enjoy each day is what I try to do. I'm glad we are still here to take one day at a time and new drugs are coming out all the time. I'm on xeloda since feb and doing well. Last scan showed no evidence of disease in omentum and no progression in bone. Praying works expect a miracle.
So sorry to hear you are having a down period - it happens to all of us I am sure. Like you I am asymptomatic at present (and on NO treatment!) and every now and then I have a heart-stopping moment when I think "what am I going to do when symptoms appear?" For me the threat is there - IV chemo - and I am terrified. So I, too, try to get as much exercise as I can 9though it is pretty gentle these days), I try to enjoy the birds and plants and things in my garden, I try to continue to go out to lunch club and garden club etc. And it all helps though some days I feel like just being alone and that, too, is good. This is a wearing condition for all of us but all the time I think of the new stuff coming out and hope it will be there for me too.
I do hope you feel better soon - it is rough feeling down as well as dealing with the dragon on one's shoulder. Thoughts go out to you
• in reply to
Why are you on no treatment?
• in reply to
We have currently gone through all the available anti oestrogenics - tamoxifen, letrozole, faslodex -and 2 oral chemos - Xeloda and vinorelbine -over 5 years and in April the liver met had progressed a bit again so the next step was IV chemo. My oncologist gave me a thorough going over and then suggested we not go that route yet as my markers were not climbing much and my general health is pretty good apart from occasional bouts of tiredness (?old age?? - I am 74) Saw her again in July and in October and the markers have only climbed a little, I have no obvious symptoms and no discomfort so really - why put myself through the rigors of chemo while I can still be living my life. We do not have ready access to a lot of the trials and new drugs available overseas (quite a few in testing here but not yet out) So I carry on and I must admit I am mostly enjoying my drugless time.
Take care
Ibrance makes me extremely tired and it also brings me “down”. I had two months off due to hip replacement surgery and I really notice the difference in me while off it. Some people don’t have pain and although I had pain it is completely gone with pain meds. One day at a time is how I do it ❤️
Hello Martha,
You have come to the right place. Welcome to this group!
Your feelings are normal. None of us wants to look ahead to what may happen in the future with this disease, but I can understand what you said about being frightened of what may happen. I try to look at it this way: I am not sure of exactly what will happen to me in future, so I try not to dwell on it. But what may happen is a widespread cure for metastatic breast cancer (I am confident of this!) I was diagnosed 3 months before you were. If you are feeling tired, I would suggest taking your time rather than trying to push your body beyond what it can manage at the moment.
Over the summer I was trying to do too much. When I saw my GP for one of my treatments I told her how disappointed I was for feeling so tired about going for a swim, she told me to just take things one day at a time. So I took her advice and stopped beating myself up for not reaching a certain goal. The fatigue is gone and I feel much better than I did to begin with. But you cannot measure yourself against others. We are not all on the same treatment plan, some of us have underlying health conditions, while others of us don't. So I would not lose heart if you feel that you are not responding in the way you would like. I would just slow things down and if you have some jobs you need to do either ask for help or spread them out over a few days so that you can concentrate on getting some much needed rest.
Have you looked into complementary therapy? I get a massage once a month, and I also enjoy Epsom salt baths every day just so I can relax and read a book.
I hope you feel better soon,
Sophie x
• in reply to
I have a wonderful massage therapist I’ve seen for years. She’s very holistic which I appreciate. I know what you mean about swimming. We are fortunate to have a heated pool in the summer. The letrazole caused back pain flare up and I could not enjoy the end of the season before we closed it. I resent having to miss things like this. I will try to heed your advice.
• in reply to
Hi Martha,
It sounds like you have a really good complementary therapist. That's great! I was planning to buy an annual membership at my local swimming pool over the summer, but I spoke to my husband about my plans and he said I should try it out first before committing to anything, which I did. But when I came home exhausted from just one session that really put me off and I haven't been back to the swimming pool since. I may try again at some point, but I don't want to feel so tired that I cannot function. So I have been looking at other ways to exercise.
We have a couple of outside gyms where I live that I have been meaning to try. So this morning I did just that! I only spent about 10 minutes or so rotating between the different machines, but I think I will gradually increase the time until I get to 30 minutes or so. I don't want to overdo things and be put off of that too! My husband suggested that I visit an inside gym, but I would rather be outside. I am also the type of person who prefers to combine errands or appointments, so that I am not having to drive out of my way if I can help it. The outside gym I used today is right outside the entrance to a nature reserve I visit three times a week when I am walking one of my client's dogs, so to me it makes more sense to use that while I am there, rather than making a special trip to an inside gym that is miles away. But that's just me!
I also combined two appointments that I have scheduled at the hospital next week (seeing my oncologist on Monday for my CT scan results and my infusion treatment on Tuesday) to having them both on Monday and I have not been able to stop smiling since I did it! It just makes my life easier and it means I can still go to work on Tuesday.
OK, that's enough waffling from me!
Take care,
Sophie x
I echo Jerseygirl45 and add that another tack to keep anxiety from robbing you of the now is to find ways to meditate or engage in meditative activities like art and music. I have also found allowing myself that extra sleep makes a huge difference in state of mind and body. Blessings.
Greeetings sister/warrior I do pray that the very God we serve will cover you with love, and compassion. I pray for your healing. We are the body of Christ, and you are the heir to the throne. Victory yesssssss, defeat noooooo. I know you are facing a challenge once again, but please keep the faith. XoXoXo
Martha,
You are in my prayers and I am sending you hugs. I don't have pain with the Ibrance/Letrozole combo but I don't have much energy either.
Blessings, Hannah
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