Oh, dear Barb, I'm so, so sorry about the MRI and how you're feeling. My heart goes out to you this morning.
I'm hopeful that the radiotherapy will help restore your vision so that you can drive and ride sweet Bugsy again soon...
Sending lots of love your way...
Lynn
Hi Barb,
Thanks for posting an update. I have been hoping to hear something from you since the last time you posted. I am sorry that the MRI result is not what you had hoped for. But did the doctors tell you what the deposit behind your eye is? Maybe it's not related to the cancer and is an issue that can be treated like a cataract, glaucoma or something else. I hadn't heard of meninges before, so I had to look that up. What will happen next, Barb? I hope whatever it is you can start soon. You mentioned radiotherapy, so I hope that will work for you. Please don't give up. You still have a lot of living to do.
I am thinking of you. Actually, I haven't stopped thinking about you lately.
Hi Barb, I am so very sorry to hear your news. I had been wondering how you were and this news must be devastating for you. We are all wishing you success with the radiation and send love to you and your loved ones. You have been such a source of fun, truthand energy to us all, thankyou. Love Fayx
I’m sorry you are faced with this news. I’m praying that your medical team and radiotherapy will eliminate this problem area and get you back in the saddle again. 🙏🙏🙏🙏🙏
Don’t give up... fight fight fight damit! I hate this #€£##*# cancer. Jimmy Carter had brain cancer and immunotherapy cured him ...he’s cancer free at 91 years old ...look it up!!! Come to USA Boston Massachusetts Is hub for cancer research and trials! There is always hope! ❤️❤️❤️
I am so sorry to hear this news! Is the thickening behind your eye due to MBC? If so, I know of many women who are managing quite well. One woman Terlisa Shepard has been been thriving for 17 years and still going strong. There are so many new technologies now and I know that you will be back in the saddle again, soon. Sending love!
Sister/warrior Please never give up hope. You may be down, but your not out. There are trials. My girlfriend has her 5th recurrence of cancer, the same cancer diagnosis you are experiencing The tumor is behind her eye, and she is experiencing visual disturbances, and there is an area in her brain that is affected . She is in Mount Sinai hospital. She say's she is praying for the best, but she is prepared for the worst. Her loved ones, and the doctors have not given up hope. Her doctors, her daughter, and grand daughter are looking for trials for her. She has been given Taxol again, and will be getting targeted radiotherapy, and some full brain radiation. I am thankful that she is in good spirits. I pray for her, as I also pray for you. Sister, and yessssss warrior Please don't give up hope. XoXoXoXo
So sorry Barb. Is the deposit definitely cancer? Are they considering doing a PET scan? I feel for you, you have been through so much. The problem is you probably now have also lost faith in your CT scan and plan for the worse. I would suggest pushing for a PET. I know there has been discussion pro and against on this forum and I stayed clear of it but I have PET every 3 months and this give my consultant a good picture of where we are ... I no longer ask for a copy of the report like I used to and just trust my consultant to deal with outcome but I think for you it might be important to reset exactly where you are in terms of the disease so you can hopefully get some energy back to keep going for longer....Every setback is a knockout and to pretend we can just get up and go Everytime is lunacy... We pick our battles ... For me I put things in 2 pots as I describe it to my oncologist the " sod law" news and the " if only we had done this ' news( aka shit we missed a chance)" .... I was told on Wednesday that my genome test showed no mutation and this restricted significantly my chances of benefiting from clinical trials once chemo has run its course.... Ironically , as my medical team had dropped the ball twice in past year to get me on a trial , I kind of found the news therapeutic... I had been grieving the lost chances for months, carrying it like a dead weight, wondering if it would have managed to prevent progression to the liver... To know that I would not have been eligible made it somewhat easier... My consultant did not get that... For her she was delivering bad news , for me she was putting my mind at rest that we had not missed an opportunity to give me more time with my kids.... I know we are all different but I do feel that being given the opportunity to understand how things are progressing, what the options are, what is within our/ medical team 's gift and what is just a whole different magnitude of randomness helps manage our expectations... Well it works for me anyway....Now as I said my approach changes with my spirits... At the moment I don't ask much to my consultant apart fróm what is lined up for treatment 6( for info) . I am in a ' just going with the flow" mood ( but appreciate I might have evolved my attitude in light of the last 4 treatments failing from get go) but earlier on I was more inquisitive... I wish I could take you out for a coffee have a good try and talk about Xmas plans... I am sorry I made this about me when it should be about you... As I said you earlier you have had enough knocks to be reluctant to trust you will get back from that one, but I suppose that what I am trying to say is there is a place ( whether you are religious or not- I am not) where peace can be found in moving forward and making everyday count...
Barb I am so very sorry. I have rumbled on for hours earlier today not realising how significant the progress was ... I am sorry if that seemed insensitive... You have been such a driving force on this forum. I wish I could do, say, anything to help... Thinking of you.
I'm so sorry to hear your news Barb. I have been following you for quite some time and you seem to have to deal with one issue after another. Whatever they suggest I hope it will work for you and get back to riding your horse again . Thinking and praying for you
I haven’t stop thinking about you and been wondering how your scan went.
It’s so annoying that you have got something showing behind the eyes but all other areas are responding well to your treatment.
I hope the radiotherapy sorts it out and that you get back some quality of life very soon.
Cancer sucks .....
I’ve been on my new clinical trial drug, Oral SERD, for nearly three weeks and feel ok but it’s too soon to know if it is sorting out the cancer yet! 🤞
Take care and sending you a huge hug 🤗
Please keep us posted Barb we care about you so much.
Oh, I know you must have been so disappointed with the results. But echoing all above... I’m so sorry that your favorite joys are not available to you just now. Hang on...and keep sharing with us...we are here with you.
I am really sorry for this news, I know that feeling, but radiation works and be hopeful God bless you
Not such good news Barb but there is treatment thank goodness.
We all know how much you love riding. Everything crossed it won’t be to long before you can have a little trot again. Maybe the Radiotherapy will help relieve some of the problem.
I’ve never heard of meninges either. Will have a Google search. Liver mets and smaller bone mets is some positive news.
We are with you all the way Barb. Sending you virtual hugs. Was wondering how you were.
I'm still here and have all my faculties. I asked them to restrict the radiotherapy to the areas of disease (with a margin of course) to avoid any possible effect on memory or cognitive function.
I had a rescan in June and the disease had reduced by half the size. They expect it to reduce further from the radiotherapy. Before I started I was having episodes of losing control of my leg. I started kadcyla about the same time as the radiotherapy so I'm sure that contributed to the results too as I've also had a good response in my liver and lungs.
Louise, thank you so much for sharing your encouraging experience.
Hi Barb
I've not been on this board very long, long enough to see that you are well though of though! I'm sorry to hear of this latest development, it's completely understandable how you now feel, I know that I would be the same.
It's very heartening to read the responses on here, so much love and positivity. I hope that the treatment plan going forward is successful for you.
Oh Barb. I have been thinking about you ever since I read the post about the double vision. You must be a total wreck.
This is your journey and I don't even know you so am hesitant to offer advice...other than to say were I you, I would get a second and even third opinions on options. I would ignore any prognosis, good or bad, and just do what I could as long as there is at least some quality to my life.
It does seem like others on here have treated similar situations? Even Sandra, who tells it like it is, isn't writing you off yet (Said with love and deep appreciation Sandra!)
Obviously you don't want to waste precious time chasing rainbows, but it does seem worth really digging and pushing. Do you have a friend or relative who could help with this so you aren't doing it on your own--and trying to read information with wonky vision... Someone who will advocate along side you? I do think it is worth one more try. I read a quote recently that resonated with me--Hope is rooted in the fact we don't yet know the worst is inevitable.
In the meantime you are so in my thoughts and prayers... xoxo
I am so sorry to hear this. This damn disease is so frustrating everyday is such a challenge. Try to stay strong and just know we all love you and sending prayers and hugs.❤🌷😘
Barb , just seen your post and I am sorry you have this new worry , just when your ct scan results were showing improvement, but please do give radiotherapy a try and keep going! I know how much your horses mean to you ...are you able to get your daughter to take you up just to spend some time around them ...you need something to lift your spirits just now ...thinking of you and wanting to give you a big hug ! Much love x
I haven't been on the site for over a month now and just saw your post. I am so sorry to hear about the development of mets behind the eye. You were one of the first people to reply to my first post when I started on the site several months ago and I always appreciate your humor and posts. Visualize that "deposit" shrinking. Visualize making a "withdrawal" of the deposit. If I can remember with my chemo fog, I think I remember your mentioning that you aren't into the foo foo hokey energy work that I do but it's worth a try and no bad side effects.
I will keep you in my prayers and send healing energy your way. Love to you and yours.
When I was first diagnosed and found this group you are one of the people who “stood” out to me. I looked forward to your post and still do. You “maybe unknowingly” encouraged me and gave me hope. I don’t like seeing your replies in this post. It breaks my heart. I understand it doesn’t look or sound good but there is always hope. Romans 8:24 talks about hope. “But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.” Basically hope is all any of us have. Please keep hoping. And please continue to post and let us all rally around you.
❤️
Stacy
Barb, Just wanted to let you know that I've been thinking about / focusing on you all day.
You are so well loved in this community and you have been and continue to be a role model for dealing courageously with everything this god-awful disease throws at us. I sense a quietness on the board, and I suspect that it's because of what you're going through.
Please know that we in this community are here for you, ready to support you in whatever way we can, near or far.
Dear Barb, so sorry you too have to go through this agony. Because agony is what it is. As you know, I have extensive brain Mets and progression in my lungs and bones. It has taken a PET/CT scan and 2 MRIs before my radiation oncologist came up with a plan because with each new test, they discovered more lesions. Unlike you, my extracranial metastasis is not under control but hopefully, the Exemestane will work for me. That remains to be seen. Then I am now suffering from weight loss, muscle wasting and fatigue. I’m sorry if what I am writing here seems to be all about myself. But what I would like to let you know is that the most difficult part is being told about your diagnosis. The fear is almost physical and the hopelessness seems never ending. Yet as the days go on, I feel okay on some days and not good on other days. Now that there is a treatment plan for me, I feel better. My advice is, find out exactly what the problem is,. Is the deposit behind your eye and the thickened meninges breast cancer Mets or is it a primary cancer of the eye? There was a time when I spoke to my husband, daughter and sister and asked them what was the point in my getting treatment when the progression is so extensive and happened quickly. I told them that having the treatment is just buying time. My sister responded that “we are all buying time”. How much time each of us have is not in our hands.
I know that you are not a believer and I am not here to convert you but during these trying times, the remaining strength I have is not mine but His. When I feel like giving up, I just call out to the Lord to give me strength and He has delivered. When there is no way out, God is the only way out. There is nothing to lose, just reach out to Him and He will hear you and will help you. I wish you well.
oh Barb, sorry to hear this. It sucks but can they do something about the double vision? So sorry also to hear about the MRI. You hang in there, we are rootin for you, even though I totally understand why you feel the way you do. I suggest doing what they suggest. Sending more hugs
Dear Barb, I’m so so sorry. I am also waiting on scan results and not expecting good news so I can understand where you are at. I’ve been thinking about the things yet undone that I still want to do. I’m not ready to go yet either and it’s a hard place to be in. Take some time to mourn and be angry, really angry at what this cancer does to us and what it takes away from us. You have gotten to see your daughters married but you haven’t cuddled grandchildren yet, you need more time with your daughters and on top of everything Covid is stealing the time away from us.
I won’t offer you prayers and good wishes because this cancer takes what it wants when it wants. I will say that after you get over being angry and defeated I expect that you will fight this with every ounce of your being for whatever good time you have left. I think we showed up here at about the same time so I feel like I am in this fight along with you. If you are as tired as I am, I can understand your levels of frustration and depression. It is hard to swim away from those feelings to make yourself fight. Some days I would just rather sleep. Hopefully we can overcome that and give ourselves some more time. Hugs, no advice, and lots of empathy. Elaine
What about a clinical trial? Have you seen an ophthalmologist? Maybe that is a good start after you begin radiation... so many more wats to deal with this these days
I am so sorry. Is it just radiotherapy that's available? What about seeing an eye specialist? I can imagine how restricting this is. Let's pray that s solution can be found. Much love Carolynx
Hi Barb, I know that there aren’t any words that can really help at the moment, but just to say I’ve been thinking of you since your last post and I really hope the radiation works and your oncologist is wrong about the timeframe jxx
Barb I am so sorry . I admire how you have been so clear over here that the situation is dire and just want to sit here tonight with you so that you have one more among so many who care so deeply with you. We are no longer alone, no matter what we are facing.
Dear Barb, please do not give up in trying to find a possible treatment.
You may be tempested but you will not be overcome.
I am so sorry to hear this . I’ve been following you since I joined this forum . You have a great spirit . I am at a loss for words x
Hi Barb
I am so very sorry for your result - what an absolute kick in the balls (if you had any!). You go ahead and feel utterly devastated - get drunk, scream, shout, break something (a household object).
Then when you are ready, remember we are all here and want you to continue your fight with our support.
I am so very sorry. Like many of the ladies, I have thought of you often since you posted about your double vision. Normally when I go the bed, the last thing I routinely think about is my kids and the impact this disease will have on them. Last night all I could think about was you. Like Lynn, I sensed a stillness on the board yesterday - we are all deeply saddened by what you are going through. I hope you are able to find some small comfort in knowing that so many of us care about you and are pulling for you.
I have been trying to find the right words to send you Barb and am failing. All I can say is I’m so sorry about your results and angry that this rotten disease is being so cruel to you. I really hope the radiotherapy helps and improves your QOL. Sending you prayers and a big hug xx
So sorry to hear this Barb. Hope and pray the radiotherapy will work. Will keep you in my thoughts and prayers 💕
Theresa
I can’t find the words to express what I want to say. I’m saddened to hear your results. I hope your doctor can find something else to try. Holding you in my prayers Barb. 💔
The pain you are feeling is palpable and, as you are reading, we are all trying to share the pain with you to lessen it. I hope that the power of our prayers and our love is spreading over you and helping somewhat to ease this place you are in at the moment. Let hope that as each day passes, the pain and discomfort will ease a little and you will find a little more peace. Know that you are much loved.
Sending you a virtual hug. I am sure this is all very shocking and difficult for you and your family. I would echo others to try stay as strong as possible and keep fighting as long as you can. I wish you comfort and peace.
The tears just won't stop. My heart is breaking and I don't know what to say. I am asking all believers to surround you in prayer for comfort and peace and for you to feel the love and prayers being sent your way. Prayers and hugs, Hannah
This is sad news, indeed, Barb. Hoping the radiotherapy helps. You may not be able to see or ride Bugsy, but can you touch him? Maybe "see" him through your hands. Animals always help calm me, although I've never been lucky enough to own horses.
Wishing you all the best outcome, no matter what path you choose.
Barb -hang in there-so sorry about the results but maybe the treatment will help. I’ll be praying for you as you have answered me many times and all of us are in this together. Be strong. 🙏❤️
Oh Barb, I don’t know what to say. My heart is aching for you. This disease is so awful and cruel. Know that you are so loved by everyone on here and we are surrounding you with love. Please don’t give up. Sending much love, Linda
My mums in such a similar place as you as we have discussed before, all I can say is I know how you feel, I feel my mums pain and disappointment when things don’t work when we need them to so much! I am thinking of you and sending my love!
uggh. To the billionth degree. God, please help Barb -- in the deepest of ways. And to not be able ride her horse --only you know, God, how life depriving that is. I have nothing more to say... just giving you my heart right now.
So sad to read the anguish in your message. I'm going to go with prayers that the radiotherapy takes care of the eye issues. As you mention, with good scan results, and all else stable, there have got to be questions about what is causing this and how to fix it.
I had disappointing news yesterday as well. My most recent pet scan (this past Friday) showed some progression in both right and left iliac bone and also small bit of growth to existing nodule in my chest. I will be leaving the Ibrance/Letrozole protocol which worked for 34 months and am told that my next line of therapy will likely be Faslodex. I know that you have been receiving this injection. Can you give me any idea of what to expect? Also, do you take any other medication with the Faslodex? I have seen that sometimes it is paired with Verzenio or Kisquali.
Please know, Barb, that you are in my heart and prayers. So many ups and downs with this unpredictable disease. I'll say extra prayers for you tonight!
I have been trying to find words of comfort and for now they escape me. I just want to scream that this is so unfair and totally illogical that your disease is responding to your new treatment in most places but showing up in other parts of your body.
Life sure does suck sometime! Take time to throw things, scream, and stomp your feet after that I know you will regroup then come up thoughtful plan.
Like everyone else on this board, I wish I could fix it for you or at least help in some small way but I can only keep you in my thoughts and prayers for now.
So sorry for this news about your eye, and the news from the dr. I am sure you are going through so many emotions. I wish you peace and some love from Bugsy, he will give you comfort... if you can’t ride, maybe just visit him for a hug.
I am so very very sorry - Vision is the one thing that gets us through each day -just seeing all the beauty around!. wish that you could ride because I know it would improve your spirits but just spend time with Bugsy - I'm sure it will help. I had to give up down-hill skiing which was a huge part of my life...Sending many hugs your way.
Haven't been in the forum for a few days. So very sorry to hear about your devastating news. I hope your visit with your daughters will buoy you up somewhat. I liked Sandra's post very much. Some hope. Hopefully once you clear this hurdle you will be able to enjoy the results of the other scans. Sounds like you really need someone in to care for you so your nerves can get a rest.
Is a respite care available to you? You need peace and quiet and taken care of. Can you stay with a daughter for awhile?
Hope you find some comfort and treatment soon.
I am feeling downtrodden at the moment as I am struggling with Ibrance dosaging and just yesterday had a bone and CT scan. I am very tired. Didn't sleep well and was back at the hospital today for Faslodex injections and Zometa infusion. As you well know it is a constant battle.
Barb, I am dealing with the exact same thing as you. A slight bump on the back of the left eye, a lesion or tumor. I started whole brain radiation (10 treatments) immediately for possible suspicion of brain mets. Four weeks out,I just met with the specialist eye doctor, and the bump or lesion is greatly reduced! But I am still dealing with double vision, have been battling for about 4 months now. New glasses with prisms, but they do not work. Meeting with eye dr again tomorrow. The radiation has done quite the number on my ability to walk. Very weak and unsteady, can't walk without a walker, and they have no idea why yet. So frustrated and just want some answers!
Just reading the posts from a couple of months ago and wondered how you were doing with your double vision
I have optic nerve damage and still have the double vision which does change sometimes...because the eye isn’t working properly it seems to help a bit with the double vision as the two eyes aren’t competing with one another...if that makes sense...the doctors aren’t sure which has damaged the optic nerve...radiotherapy or the tumour...I’m still hoping for maybe some improvement but nobody knows
I wish you all the best and hope we both improve over time...I never expected or imagined this and it’s so awful
I hope you will go for a second opinion on treatment I have in the past gone for 2nd and 3 rd opinions on treatment plans. My opinion is no Dr should tell you that you have only months even if that is the norm everyone responds differently to different treatments please if you are able search for a 2nd opinion on treatment it can’t hurt a may give you a whole different outlook. I have been on this site for a few years and have noticed whenever anyone feeling down with their prognosis of test results it is you that we seek valuable advice from and feel better with your suggestions and opinion thank you for that if you can please get second opinion on treatment and outcome. Thoughts and prayers are with you many of us on this site are here for whatever you need from us❤️🙏 please reach out when you need us.
You are not going "to be leaving the world yet". I have a feeling you will outlive us all. I read about a woman who has been stage iv for 12 years.
You are just going through a tough time right now like we all do. At times like this all seem pointless. But try to remember how many times you felt like this before and it "passed" and you went back to riding Bugsby (love that name) and got on with your life. We all have these states when we feel like live is so different now. There are things I cannot do now that I used to and sometimes I get very depressed. But then it passes.
The double vision may be something they can fix or give you eye drops or make you wear a patch for a while. Not everything means the worst news.
Funny, I am at the opposite end. I tell myself I am tired, I am sick of all the violence and protests we are having in the USA at the moment on top of the pandemic and on top of having one of the stupidest man on earth in the White House.
I don't have a horse and I live in Brooklyn where is very congested but I am tired and sometimes feel like I am ready. PS. I believe there will be all sorts of animals in heaven, so horseback riding will still be an option and all the dogs I had growing up I will see again.
You are just having a bad few days. You were one of the first people I seen/interacted with on this board and look we are both still here.
Day by day and realize we are entitled and sometimes need to go through the bad days feeling sorry for ourselves so that when we are feeling better, we appreciate it that much more.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
(Said with love and deep appreciation Sandra!)
PET/MRI scans show new activity
MRI and Bone Scan update (Stage IV BC)
Stable scan results 3 years in
