It's another tough and emotional day. I was diagnosed in February 2018 with mets to my intestines (discovered through surgery for what they'd thought was Crohns). Quite a shock and I haven't been the same since. I'm now on round two of ibrance (125) and letrozole. I'm sure my family is sick of me crying and feeling down. This was not who I used to be! I need to vent here and seek some positive encouragement. Please tell me your success stories. Pleas tell me it gets better. When does it get better? How did you make it through the first year? I'm a believer in Jesus and what only He can do, yet I also believe He puts people in my path that can fill me up and give me strength to do another day. My first scans are coming up the first week of June🙏🏻
Feeling lost and so sad. : It's another... - SHARE Metastatic ...
Feeling lost and so sad.
PS. I'm 48 and have two kids, a daughter who is 20 and a son who is 16.
You are right out of the gate.. What you are feeling is what I think we all are still going through no matter how long. I was lucky with being cancer free for 17 years. Then last summer I found out mets to rt lung and spine. Your younger then me and you have younger kids. I had my son at 16, only child and thank God I had him. So he’s grown but I want that Grandchild, the quicker the better. There are ups and downs and you will feel your family is your whipping stick. That’s why they Love you and I know understand. My husband gets it on my bad days, it rolls off his back. So take time and it will sink in, remember little kids can do it we can. Happy Mother’s Day!❤️
Take a look at my earlier posts and you will see how it was for me. In short wrapped up in a blanket shaking on a couch. Suicidal. Didn’t want to get out of bed. Went on for at least 2 months. That was almost 4 years ago. MBC from the start with Mets to both lungs. I don’t have a faith and I’m not a Pollyanna. At some Point I didn’t have the energy anymore to be wracked with that level of anxiety. I called the SHARE hotline, which I always recommend. They will put you in touch with a “buddy” who has a similar clinical Picture. Mine was about 12 years in. I found Kris Carr’s website. She has a rare stage 4 liver cancer. Filled with uplifting info for mind body and soul. I forced myself to go out. Do not isolate yourself. I have an oncologist I am comfortable with and luckily a supportive husband. You will quickly find out who your true friends are. I’m in therapy and on antidepressants. Not for everyone but a huge help for me. I found Buddhism and go in retreats to recharge. You could find out what your Church can offer. Some peoPle go to support groups. I’m Leary of a mixed group—non mbc and mbc. I see it as two very different things but that’s me. I am stable on meds. I wrk full time. Yes I’m often tired and my body hurts and my hair looks like rabbit fur. But I have purple streaks in it and I’m traveling when I can and trying to live a full life. This disease turns you inside out. It puts you through lots of difficult changes. You need help not only with managing the clinical stuff but the emotional stuff too. Take it slowly. Say nice things to yourself. Allow others to support you. Does it get easier??? In many ways, yes. You realize we are all visiting this planet and so when you’re ready, find your joy and live your life. I still cry. But I’m not paralyzed by sadness or fear. And if that changes I’ll look for help. Good luck with your scans and please check back in ❤️ 🙏
Thanks for that, excellent look at how this disease does physical and mentally get you down. I’m glad your so positive now. ❤️
I was diagnosed January 31. 2 girls 17 and 19. I just turned 47 two weeks ago. I haven’t had a dark day since the first couple of weeks. I did so many things to try to gain control. I do have dark thoughts pass my mind every so often. I try to visualize a stop sign when that happens. I think it’s a matter of creating positive habits to redirect the negative habit (for me). Here is a long list of actions I did:
*walking 10-30 min 4-7 times per week with my 80s music
*juicing daily
*i went crazy w supplements but have gone back to normal. Think I was trying every single one that I read about...then I started learning some canceled others out or were duplicated. That was probably one of my crazy moments
*i went to a hypnotherapist to confront it. Help me to reshape it’s role in my life. It was one visit; she didn’t try to sell me more.
*when I go to bed, like twice a week, I listen to healing hypnosis on YouTube
*early on I kept a journal of only positive entries. So I’d have something to look at on bad days. It was simple signs like seeing a rainbow, a message at church, any signs that “it will be ok”
*surfed around the website for radical remission project
*read “Spontaneous healing” by dr. Andrew Weil
*try to remind myself the bad feeling was temporary. I remember having postpartum depression for 10 days. During those 10 days I thought it would never end
*another friend of mine said “don’t be afraid to get a prescription for antidepressants. Sometimes you just need them 90-120 days to jumpstart”. I keep that in mind.
Only recently, I started over reacting to everything like any pain, itch, nausea. I am going to see if it continues and consider counseling if it does.
Oh I just added reading daily Psalm 23.
Hugs.
Thank you so much.
Although I am not religious I love Psalm 23. Picked it for my Dad’s Mass card. It is so beautiful and so calming.
Thank you so much for sharing all of those ideas. I like the idea of visualizing a stop sign. I will try the others as well.
Wow, I love the Psalm 23 comment. I repeated the Lords Prayer continually on the morning of my original surgery, (20 years ago) on the way to the hospital. It gives you great peace. Then I pray for peace and receive it. I need to remind myself now to do this again in the MBC stage that has now entered my life.
I was 48 when I was first diagnosed, with 4 children and my youngest only 2 years old. God kept me alive to raise them I am certain. I hope he has a plan for me to stay around to see them all married, etc. A couple of grandchildren would be nice! But I guess I will be happy with what I am allowed to experience here on earth. It is a challenge with cancer, in general, to not get alarmed with every ache and pain. but all of those discomforts are not cancer. That is hard to remember but certainly true. Love and the very best to all of you and a very happy mothers day to those with children.
Oh, and I took a trip to Hawaii in April. That was amazing...so many moments where I completed forgot about MBC. I know a few people that make sure they do trips/vaca 1-2 times per year. One is at 18 years-does 2 cruises a year! I can’t afford that but I’ll try my best 😁
I just returned from a week in Florida. I went there to see my baby graduate from college with many honors, I must say. I spent a few days on the west coast with my youngest daughter and a few days with the rest of my beautiful family to be at graduation and just have fun at the resort as well. I had a week not focused on cancer and was not sure that was possible. It was really fun although I ate way too much and many times not the right foods and drank way too much, especially since I don't do either at home. So, now back in Bethesda to get my system back where it belongs and I will go for bloodwork this Wednesday to see where I am for the next round of Ibrance. I will say that dropping to 100 mgs made a huge difference on how I feel. But, I still am off as on day 26 I was neutropenic and had to stop. The funny thing is, I was not going to take it when I was away anyway. So, that was fine with me. My concern was my lowered red counts. I was not at the point that I needed a transfusion but it does make me think about how round 4 will affect me. Does anyone have that experience?
I had low iron which is related to RBC. It helped overnight to take an iron supplement. My onco said to take 325 mg daily. See, that’s great w the trip to Florida. Vacation does wonders.
I’m just done with the first round of Ibrance today. So far, so good. Bloodworm next Tuesday.
Great, glad to hear you are doing well on first round. that is encouraging as many of us had to stop mid-cycle because of low neutrophils right out of the gate. What was your day 15 count of neutrophils?
Strange enough I didn’t get any lab work at Day 15. They have me scheduled for day 30 labs. But I feel good, so hopefully I’m fine. Of course, I wouldn’t mind some discomfort so I know the meds work...
I never experienced side effects w tamoxifen for 18 months and apparently it didn’t really work for me. But I’ve heard you can’t use side effects to measure effectiveness.
I felt best when you neutrophils were at the lowest. So, who knows!! And I was very distraught to see the numbers and realize I was neutropenic. It frightened me at first but your counts do bounce back up. Although it is important to know when you have to be more vigilant around others, etc. for infections. Let us know how you do. Now I do not get so worried when I see my neutrophil count. As a week or two off have always brought mine up to a level that makes it safe to take more of the red devil.
That’s good to know. I’m definitely curious now!!
Yes, keep this in mind. They do rebound. I was VERY upset and frightened the few reports of low neutrophils as that is the baby white cells being produced in your bone marrow. So, if we kill those off over too long of a time, then we don't have the adult cells to combat bacteria. An entirely new set of problems. As long as my neutrophils jump up to 1400 to 1700 hundred, I feel a bit more protected. mind you, not even close to what they were before Ibrance!! But, what are you going to do.
I also had zero problems on tamoxifin and no real problems with Femera (letrozole) which I took each for 5 years. I began Letrozole again 10 years after stopping from stage 3. I have no real complaints with that as well, this time. Last time, as I was much younger, the hot flashes annoyed the hell out of me. This time not such an impact and I only really get them when I go to bed as I take that pill right before bed on empty stomach. Ibrance full stomach in early part of day.
I found the first round to be VERY exhausting, and I only had 2 weeks. The 100 mgs was easier and it took longer to get tired and did not last as long. The third round was still easier yet with exhaustion. But it hits my bone marrow pretty hard, so I will see if he will put me on 75mgs. I can keep my fingers crossed with that. I will begin round 4 on Wednesday when I get my blood drawn once again.
I don't know what I'd do without you guys.
Hi Stacey!
So sorry you are going through this. After battling bc for 19+ years i have learned there are good years and bad years. More good then bad though. I was dx mbc in 2013. The things you are feeling is normal and we have all been there. After a scary 2013 I went into a remission (dormant) state. I havent been bothered with my bone mets since but my lung mets keep coming and going. After being on Ibrance and then Kisqali all last year, i am back into a "NEAD" state (no evidence of active disease). It wears on my nerves to know it can become active again or that it can spread any time, but I am refusing to live scared and negative. I am enjoying all my blessings God has given each and every day. I am so thankful for every day! I know He will be with me if I need to fight again. I have been dx 4 times and He sees me through.
I pray you will have great results with your treatment! It is a slow working one so be patient and dont give up. Let your Onc know if you need help with depression etc. I have taken 1 small dose Cymbalta for over a year and it helps so much. It was prescribed to me to help with aches.
Please reach out to me if you need to talk. My email is mrsbobleck@aol.com.
Missy
Thank you so much Missy. He WILL see us through this.
I am on Ibrance and letrazole my last scans showed healing. Every morning write down a healing bible verse and every time the devil tries to get you down say the verse out loud. God can do anything.
LOve this. Thanks🙏🏻
Hi! I’m 45 and have a 5 year old - I have been metastatic for 2 years to my bones and liver - also on ibrance. It’s tough. But you can do this. I still work - there are days I’m paralyzed with fear especially with a child in kindergarten and my husband has a chronic illness. But you have to stay positive. You have no choice. I take atavan for anxiety and it has been night and day for me. It helps a lot.
I have been successful on ibrance. I still have it in my liver and bones but it has not moved to other organs. And when it stops working I will move to the next treatment. There are so many new medicines coming out everyday. Surround yourself with encouraging, positive people. It’s hard it’s not fair and it’s scary but don’t get stuck there.
Worry does not take away tomorrow’s troubles. It takes away today’s peace. And repeat...
Worry does not take away tomorrows troubles, it takes away today peace. Worry does not....
I was diagnosed with stage 4 mbc 22 mo ago. My first months were bad. Couldn't get into bed by myself, needed help with dressing. Just cried. My life was over. Made arrangements started throwing things away. Didn't want to go anywhere. Why me! To late to have mastectomy. Started radiation to back hips pelvis,arms. Started to feel better.almost no pain. I could stand up straight. Started Letrozol and Ibrance 100 mg. Then one day I said enough. I need to except this, nothing I can do. So now I do what I want and what I can. I do not feel guilty to say I cannot attend.. sit when I need to. Then a few months ago Letrozol stopped working. So I now get Faslodex injections, feeling better. Just cry if you need to, only do what you can. You are still early in the process. You will start to feel better after a few months of meds. Every day will pass,and you will learn to except. Try to enjoy everyday. Don't push yourself. I have four grown children, 6 grandchildren, 1 coming in August. I never mention cancer to them, thinning hair, back pain.new meds,pet scans,appointments. I know I can come to this group and get support. Well today is Mother's Day. Kids are bringing dinner. Hope you start to feel better. One day at a time, it will get better.
Dearest Stacey,
I was in your shoes after my MBC diagnosis in November 17; i.e. state of shock, trying to hide grief throughout the holidays.
For me, the first couple of months were the hardest. I switched to a fabulous oncologist in March and it made all the difference. Your oncologist is your most important advocate, and I hope you are working with one who is not only positive but on top of her/his game. Mine is a researcher as well as a practicing oncologist; she is very engaging, takes time to answer any and all questions, and is extremely encouraging--just what we all need with this diagnosis.
I would guess that your state of mind will change once you have been on these meds for 5-6 months and have seen the results of your next pet scan. Mine (5 months after beginning the Letrozole/Ibrance combo) showed no sign of cancer in my spine, where my mets had spread. Once you have seen firsthand the power of this protocol, those joint pains, aches, and thinning hair are much more tolerable. I have also noticed that my fatigue level is much lower than when I first started on the meds. I think your body begins to adjust.
Hang in there, Stacey; it does get better! God bless you! XO Linda
Hello SeattleMom,
I am just curious, but when you say that there was no sign of cancer where the disease had metastasised to your spine, does that mean it has disappeared from there? I will be getting my CT scan results back tomorrow when I see my oncologist. I am still new to all this. I had lots of scans (full body bone, MRI, CT and a PET CT) performed when the doctors were investigating my disease, so this is the first CT scan since I started treatment so want to know how to interpret the findings if they say something similar to me. I hope that makes sense!
Sophie x
That makes total sense.
Although this disease, once it has metastasized, is incurable, the current treatments can prolong the NED status. The cancer is still there but is undetectable on the scans so is classified as "No Evidence of Disease (NED)." Once the scans pick up that the cancer is progressing, the patient is switched to a new treatment protocol.
The goal, of course, is to remain on a treatment for as long as possible, while it is preventing the cancer from growing.
I will be praying that your scans show NED and that you move forward with even more resolve. The main question will be, if there is still evidence of disease, have the tumors been reduced in size? Then you will know that your treatment protocol is working. God bless you, Sophie! You are in my heart and prayers! XO Linda
Hi Linda,
Thank you! Yes, that does make sense. I wasn't sure if it meant that the disease in that part of the body was gone, while it was still present elsewhere. I've been having three different treatments since 16th May (Letrozole, Zoladex and Zometa), so I am hoping that the CT scan results shows that the primary tumour (and hopefully the others) are shrinking. I keep trying to "read" my body to see if I feel any different, and it is hard to tell. My breast no longer throbs, so I think that is a good sign.
Thanks again for the well wishes!
Sophie x
I know how you feel. We've all been there. Life isn't fair. In my case the only thing that got me through was God. I have a personal relationship with him. Do I want to die now? No. But I know where I'm going. Knowing God gives me such peace and faith. Faith that he will take care of my family. A peace beyond understanding.
I don't know how others do this without Him.
I suspect that the first months, maybe the first year, is roughest for many if not most of us! Do you by chance have lobular bc? It can be a sneaky thing and does sometimes go to the gut! But it also tends to respond well to hormonal treatment, though it can take awhile for scans to show that. I've had metastatic bc for 14 years and have been on hormonal tx that whole time--never chemo, no rads, just a lumpectomy with out clear margins and hormonal meds plus bone meds (first Zometa, now Xgeva) as I have bone mets. I'm tired after that long dealing with cancer and cancer treatment, but I enjoy life, love spending time with people I care about, and walk our dogs every day at least twice. Be gentle with yourself. Hearing the doctor say "you have cancer" is a shock for most anyone and knocks us off equilibrium. Let your self feel sad and angry and whatever, but also let yourself enjoy some of the things you usually have enjoyed. And now you are not alone!
Thanks. And yes mine is lobular.
Hi, what an inspiration you are. I have lobular Jc and was just diagnosed a couple of momths ago and on Ibrance and Letrozole for second month only. Still trying to adjust to this new and complicated life. All your advice is so spot on and yes we are not alone if we have each other. I was happy to hear you are Ned for 14 years, wow. Could you let me know what treatments you have been on from the beginning?
I was diagnosed 5 years ago with mbc also in bones and found in ovaries 2014 when removed. Now found in omentum and perineum. I've been on letrozole 2 yrs, ibrance and faslodex 2 yrs Now I'm on xeloda. Also on zometa for 5 yrs. This is the hardest thing I have had to deal with in life. I am 67. The only thing I can tell you is to enjoy each day and be kind to those around you. It is ok to cry sometimes but I think about little kids going through cancer. Be brave and keep trusting in Jesus. Peace and love to you.💝
Thanks sweeten. With Jesus' help, I'm SLOWLY learning to take it one day at a time. His plan is perfect which I need to remember.
Hi! You sure are brave enough to share your story! This is a hard journey, but at times very comforting when you know you are not on it alone . God, as u expressed uses people, circumstances and specially his word to reassure us of his abounding love and care over you. In Philippians 1:1-6 God tells us he is working in us and has a special purpose and plan that he promises to complete! Hang on to that promise and think of the beauty of his Art in you until that day of completion! Fear not as I am with you till the end” is another promise. These have helped me through. Dors it get better? No garantee but one can FEEL better working on your mind and heart. I have tried to set my mind on things I like doing and enjoy, as well as helping others as they cross my path and that has held me afloat so specially and of course, having Jesus in my life gives me a whole different perspective. Share your feelings with your family and work together to find their support . It pays toll on them too, each one copes differently, but letting them know how you feel helps to keep on the same page and not in a fog.
Wish you all the best and will be praying for you sister. God bless you and may you experience God’s peace during hard times and always!
Andrea
Fear not.....mentioned over and over in the Bible. Just need to get it planted in my brain! Thanks Andrea.
Welcome, Staceyness. There are some great ideas here is to help you try to cope with this diagnosis. You are so new to this and I know it's scary and overwhelming. It helps to have others here who understand. One thing I don't think was mentioned was getting some one on one support from an oncology social worker. Cancer Care offers free phone counseling, as do some breast cancer support organizations. It has helped me a lot. Just an option you might consider.
Sister Staceyness I believe, there is nothing God can't handle .Do your part in keeping the
faith, and God will do the rest. I was misdiagnosed in 2006, and then correctly diagnosed
with triple negative metastatic breast cancer in 2007. The Oncologist with 32 years
experience that I saw in Sept./Oct.2008 then said he was going to buy me some time, which
would allow me to live for about a year.He also said I wouldn't live to see 2009, even with
surgery, aggressive chemotherapy and radiation. I then put in place decisions to prepare for
my physical death, and I prayed that when I reached heavens pearly gates a welcoming God
would say come in good and, faithful servant. I had lots of family ,and friends praying for me.
Years and years of testing kept coming back no evidence of disease NED .I am now coming
into my 10th year of being cancer free, because I believe God had plans to use me to reach
others, to give them hope that they too could be Over-comer/Victors. God let me know that
no medical doctor can determine when I leave this physical earth, and that my Lord/God
supersedes all other opinions .Gods (facts ) rule. Iron sharpens iron. Please try not to worry.
Worry is the absence of faith, and worry/stress is a friend to the progression of cancer.in
your body.Prayer, and Praise are your weapons against this disease. I pray for Gods
complete healing of your body sister, by what ever remedies/cures that Lord/God places in
your path. As long as you have breath in your body there is room for Gods super natural
healing, which has also been given to me. Victory is yours,grab it ! ! !. Amen amen, and
yessssssssss amen. XoXoXoXo Your sister,and over-comer
I love your responses to all on here. You have faith that I strive for and I know God is building in me. Sending you a huge hug and many many thanks for your powerful testimony🙏🏻
YEp low RBC May mean you need a B12 shot and or iron supplements. B12 I get once a month and does not matter where your counts are
I also reject other B vitamins to help protect my nerve cells from chemo.
In addition I have found ubiqujol 400 mgs in earlier part of day. ,after food. , to give ne a great desk of energy . This is fine with my oncologist
On my cell phone!! Not supposed to say reject!! But take!!!
My pcp gives me B12 shot once a month.
The tigers are supplements I buy thru amazon. Ubiqinol is by Jarrow. I do not take iron at this point as my iron level, hematocrit and hemoglobin have been historically high. When and if they go below normal that will probably change
Feeling Scared
Update on Denosumab and Oncologist call
Up's & Down's
