Hi all— got a shock this week after scans and being stable for over a year. My hip Met has grown and I have new lesions in other areas of my hip. I’m frustrated and mad about this progression— my first since my initial diagnosis with MBC in January of 2020.
I’m to have first flasodex injections Tuesday… then blood work to see if I have PK-3 mutation. That will determine rest of treatment options.
I’m scared, mad and wanting this to be logical… I’ve been taking the best care of myself— lost 50 pounds— eating well, moving more…. Now this. I guess I feel like it’s my fault…. Anyone else feel this way? Any encouragement for this gal with progression, would be greatly appreciated.
Cindi
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CindiI have been reading your responses. Rather than any reason for feeling guilty, you deserve the relief and reward of doing extraordinary work in self care and by extension other care. Sometimes, (and for some Often) all the best efforts are unable to hold back the tide.
Please accept my appreciation for you even as you feel/experience those understandable feelings (often patterned in childhood) that we could have done more or better. You did/do an amazing job against the odds. You did best. (((((Cindi))))
It is a response that I needed to take for myself too, and I suspect many of us here.In this together.
Hi CindySorry to hear of your progression. It must have been a shock for you, and now you have to get your head around new treatments.
I know many people here do well for a good long time on Faslodex which I hope you will too. The other positive is your progression is bone only, no organ involvement which is very good.
It’s not your fault! It’s not our fault! This cancer has no rhyme or reason. It’s easy to think we’ve done something wrong but I see from the most dedicated women that it doesn’t matter how much exercice you do, how well you plan your diet and how organized you are with your medications or not…and how good or bad your moral is … it can come back..For me it came back last October 2021 and I never thought it would . I had 13 years of peace and quiet after my double mastectomy in 2008.
I still freak out before every oncologist visit (every 3 months now) and I still read all the messages from all of you ladies, but I am always ready to change course, in case my meds stop working .. my marker numbers are getting lower and are almost at the required level and this is where I’d like them to stay for a few years, but I know that I cannot afford the luxury of that certainty So, I hope for the best. I completely understand why you’re so upset Cindi and I wish I had more knowledge to impart to you but I can only give you some of the recommendations I’d give to myself: follow my doctor’s treatment to take care of the new invasion and know that there are a lot of women rooting for you and sending you lots of healing vibes and virtual hugs!❤️Congratulations on your weight loss, it’s not easy and I can only say : good for you!
I also had a bilateral mastectomy in 2008 stage 3b IDC had ACT chemo, reconstruction and radiation. I was on tomaxifin for10 years and was having problems last year. Had implants removed and a couple of months later felt awful. In October had a plurel effusion and they found a large tumor on my breast bone. Not noticeable before the explant. I have tumors all over my body in my bone. February started Ibrance and Faslodex. Couldn't tolerate 125 or 100 Ibrance and have been on 75 for the last 2 months. Just got myshots this week and received my Ibrance to start tomorrow formy 5th round. The last treatment the last 2 weeks I had severe migraines so am hoping it isn't the Ibrance. Three CT'S, an MRI scans and A necular body scan scheduled for the week of 6/20. Hoping the cause of headaches are found. Can't do 2 weeks of migraine again. This disease is such a long up and down process. We just have to hang in there and get thru whatever happens like we did the first time.
Sure hope they find the cause of your migraines. I had migraines for 40 years, then, after menopause it stopped, and it’s not been back. I get awful hot flashes from either Ibrance (100) or anastrazole and lately (8 months into the treatment) I’m starting to have skin problems-around the ankles, close to the elbows, and now my back - bunch of bites like inflammation.I should keep track of all the changes, but there are too many. Hope you feel better and hope your migraines go away!❤️
Yes, it is a roller coaster ride, for sure. I’m so sorry you are struggling with the side effects. I wish you long success on this line and hope you head aches stop. Thx for your response.
Ahh Cindy, I’m so very sorry to hear that. Of course you are mad and scared and frustrated, but this f…g cancer has NO logic!
I have heard some success stories through diet and exercise (and you have already changed so much!) but it’s so very very extreme to be honest that I’m not sure how many of us could realistically adhere to such a regime!!!
For example Dr Dale Figtree.
Chin up! It’s going to be alright. You will be okay. In the meantime we can all set a little prayer for you!
Hi ActingDirecting—are you involved with theatre? I had a 45 year career as a costume designer!
Thx for your positive response! Thanks for the reminder that I will be ok! Yes— we move forward with hope, gratitude and joy. ( tinged with a little anger!)🤪😀😡
Miss Sally— thank you for your response and understanding. My brain KNOWS these things— my heart will have to adapt too. After I get through the anger— I will be back to my positive outlook!
Ah that anger which is a positive when it is a statement of our self worth: It is justice that I be treated better.. Ah that anger which is a positive when it is the impetus to get us energized to advocate for ourselves.
We will use impetus anger rather than getting stuck in the type of anger that immobilizes and causes resentful inertia.
Anger can be energizing, activating. Anger can cover up deep hurt, a need to grieve, something else. That's OK, you have time, enough time, give yourself what you need.
So sorry to hear the news. Think positive, if you got 2+ years in first line, you have options. Hopefully you can get radiation for progression as well. Sending love, peace and positive vibes.
Hello Cindy: Just wanted to say, don't blame yourself. You couldn't have done more. You are a long way to the end anyhow. Faslodex injections are not bad after the first one and there are many more options ahead of you. What a wonderful achievement. 45 years as a designer! Wow. Concentrate on the positive in your life. I know it easy to say but harder to do but you can do it.
Hi Cindi Absolutely not your fault please try to erase that from your mind and continue on your positive life changes . I totally understand where you are coming from and I am in about the exact same spot right now. I talked with my oncologist yesterday about my recent scans and I am also having progression in bones. Grrr… and I have been feeling so good , not what I was expecting. Faslodex injections are very tolerable unless you have a needle phobia which would be hell with this disease. Have you read or discussed the “injections suggestions “ for the faslodex from all our fellow thrivers ? There are many and are very very helpful .
Keep us posted on your treatment options.
I ‘am sure you will turn that anger into a new determination to carry on living our best life but we all deserve to take a pout break once in awhile .
I am so sorry for your news. I can understand your anger and frustration, especially since you have been taking such good care of yourself. This progression is not your fault. I hope and pray your new treatments will kick cancer to the curb. In the meantime, try to think positive, continue eating healthy and exercising and taking care of yourself and know that all of us are sending you positive vibes and hugs.
My very sage oncologist shared with me early on that "the cancer is going to do what it's going to do." Meaning, that no matter how hard we try to control it, we can't. So, with that in mind, he mentioned that we should take care of our bodies to give them the tools they need (within reason, perfection does not win in this game) and live our lives. Eating right and excercise does not cure cancer. I pray everyday science comes up with a cure fast. So, as you can see, this progression is not your fault!
Cindi,I have been on Ibrance and Faslodex for over 2 years now. Nothing has progressed, markers have lowered and I havent had any problems.
When getting the Faslodex injections I have two of the nurses do it. I never look at the needles, they each give the injection in each hip at the same time. The first time I was in a panic not knowing what to expect, but after that one I was fine. The Faslodex is very thick and takes a bit for them to get it all in, but if you have a great nurse or nurses you will be fine.
Hi, Cindy!I had faslodex mono therapy for about nine months. I would say that it was my favorite treatment! Just once a month, an injection to both hip areas. And my cancer was very responsive! Hope your treatment goes well and that you have a long journey ahead. God bless you!
I have also felt that disappointment when, for seemingly no reason at all, despite our best efforts to look after ourselves, our bodies don’t follow our lead.
Like our body is that defiant child who wants their own way.
It’s so maddening, and it’s ok to feel angry. Give yourself that. And then we need to swing the pendulum back to at least believing we are in charge lol.
I can totally understand your frustration,anger and anxiety. Don’t we all hold our breathe a little bit in between scans. You did absolutely nothing wrong if anything you made your body stronger to be able to manage this new treatment. Kudos to you!!Starting anything knew is a bit nerve wracking but I have a strong feeling your going to find a way to manage it. I wish you nothing but the best results from your new treatments!!
Progression- it’s like being sucker punched in the gut, isn’t it?! Just know it is not your fault! You’re doing a great job taking care of yourself, and because of that your body is stronger, it’s not your fault -You got this! May your new treatment be manageable and may you continue on it for a very long, long time! God’s Blessings to you!
NOT your fault; NOT oncologists' fault; NOT fault related--number one. Number two: just feeling it with you...the absolute uncertainty of this thing we are walking in. thinking of you today -- thankful for medicine that can continue to face this "thing" -- wishing for all of us hope and peace.
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