More liver tumours and a pleural effusio so Afinitor and exemastane haven’t worked
My oncologist wants me to have chemo but no way so she’s trying the fulvestant injection
I’m so upset
More liver tumours and a pleural effusio so Afinitor and exemastane haven’t worked
My oncologist wants me to have chemo but no way so she’s trying the fulvestant injection
I’m so upset
Oh Barb, I am so sorry to hear this! Wondering if you have the ERS1 mutation (AI resistance), like me. Have you had genomic testing? I've been on Fulvestrant since November and to my surprise it is working. There is a trial for the oral dose (Fulvestrant) for patients with bone and liver mets. Unfortunately, I was not eligible for it and receive the injections once a month. To be honest it really isn't that bad (the injections) and I feel a lot better than I did on Ibrance and Femara. Thinking of you and sending love!
I was on Ibrance and Femara for 18 months, my next course of meds was going to be exemastane and everolimus. My oncologist ordered genomic testing and it was revealed that I had developed the ERS1 mutation (AI resistance), so that combo wouldn't have worked for me. I am currently on Fulvestrant and when that stops working I will take part in a phase III clinical trial with a promising new drug that targets the mutation. clinicaltrials.gov/ct2/show....
Good luck with your transfusion and Fulvestrant! Wishing you all the best!
I'm so sorry and sad to hear this; here's hoping and praying the fulvestrant will be the magic bullet; all the reading I've done on here ... at least I seem to recall ... so many responding well to the fulvestrant; I'm glad you have the option without taking chemo. God bless you, heal you, and strengthen you through this trying time, in Jesus name, amen! Remember, the children of God, when they go through the bad, God turns it around and uses it for their good! This is the promise He makes to His own beloved ... US!!! <3 xo
I have a feeling that the fulvestrant is going to work wonders for you! I try to live in hope always because without hope we are most miserable but I know with God all things are possible and as long as we wake up living and breathing, the possibilities are ENDLESS! I loved Jesus when I was just a little girl; I told hubby last night that the older and hopefully wiser I get the more I realize that everything about Jesus was factual. The more historians come up with, the more it shows the truth about everything He said. My favorite author is C.S. Lewis, who was an expert on ancient manuscripts and also an atheist. The more he studied the scriptures, the more he believed the gospel was true because he put it to the test of other ancient manuscripts, anyway, I love reading about his journey and fact-finding mission. I said all that to say, ourJESUS is REAL! He is not a nice story, He is the Son of God, our Healer, the one who shed His blood on the cross to cover our sins AND our healing ... by His stripes we ARE healed! I claim this healing for you, in the mighty name of Jesus, that you be made whole and cancer free from the top of your head to the soles of your feet! amen much love to you and your beautiful family! xo
I’m so sad to hear your news. Crying as I write this.
I’m hoping you get some goodness from whatever time you have. These words seem so empty.
But know that even though I only know you here, on this site, you have meant a lot to me. Your knowledge. Your kindness. Your caring. I am thinking of you all the way down here in Oz, and I have you in my heart.
I can’t do a bloody thing to help you.
But sending love and virtual hugs.
If it can make a tiny bit of difference.
Timtam hugs to you.
£&*# anything off .....that doesn’t serve you. You know what I mean.
Only do what you want.
What a lovely reply...thank you
I’ve calmed down a bit...had to have the farrier out this morning...Monty has a very sore hoof...the ground is so hard as we’ve not had rain for ages and he’s suffering...has new shoes on now so should be more comfortable
It took my mind off the dreaded results from yesterday
So sorry Barb. I am going thru crap too and do go for biweekly chemo. I don’t have any notable side effects. Try the shots but please don’t rule out chemo infusions. Whether it’s shots, pills or IV it’s all some kind of chemo. I know you will soldier on and make the best of things. Let us know what you decide and how you do. Sending love and a big hug
I wish we could sit down, have a cup of tea, and talk. I am NOT brave. I am NOT a poster child for the heroic cancer patient. Since being told I have advanced metastatic disease, I have been a mess most days. I was rankled with anxiety and depression. I was hopeless. I was ready to jump of a cliff. Literally. I have a lot of bravado, but once I had moved beyond being stable on Ibrance and faslodex, I was counting down the days and not able to handle it. My poor husband. Stuck in a house with me. I talk to my local therapist and the hospital psychiatrist calls once ever 2 or 3 weeks. I have hidden from most people. Slept a lot. Not good behaviors. I’ve slowly been improving because of all the support I have. And it helped to hear yesterday that there are many women on my chemo for a long time. I did not ask what that meant. Maybe when I go back in 2 weeks. I am calmer and getting back to doing the little I do around the house. I’m so exhausted by my feelings. You have a lot of physical and inner strength. Of course this is going to put you in a tail spin. You’re human. It isn’t supposed to go like this. I know you are resistant to therapy but I don’t know how I’d do it without my therapist. I don’t know how my husband could stand it. I try not to overburden friends, but there was a week I was so out of control I texted four of theM that “I can’t do this anymore”. Can you imagine getting a text like that? Today here I sit, spending the day reading, eating, but much much calmer. I’m probably not going to live a long time but I don’t even feel sick as this b:tch ravages me. My doc expects my scans will be better (Dr Pollyanna, but she could be right. There are other drugs she says. This time a few months ago I couldn’t swallow! I just gulped down pork and mashed. Loved it. I don’t take even eating for granted anymore. I read about how healthy people are dying of Covid . A few months ago a healthy highly accomplished woman went to work and a piece of a building fell and killed her. Things like this don’t help me when I’m in a panic, but when I calm down, it does put life in perspective. I hate this disease. I want to live into my 70s. I’m 66 1/2. I want the miracle drug. But meantime this is my life. I am struggling to accept it. It is not your time to go. You are too feisty, too active and have a decent quality of life in spite of what you face. Take whatever treatment will beat back this b:tch. I have no secret sauce. I’m just a terrified person trying to live my life with some perspective and appreciation. I’m not done yet. Either are you. IV chemo is not the end. Rethink this. Having said that, hope the shots do it! 💕💕💕
Nancy I wish I could sit and have tea with you too!
You understand just how this bastard disease is...I’m almost the same age as you February 1954 and I wanted to get to 70 and maybe see a grandchild but I doubt that will happen...my oncologist is the gloomy type and I don’t think she was pleased with my reaction to her suggestion of chemo...I’m not a number I’m ME and as you pointed out I’m a bit rebellious and question things
I’ve calmed down a bit but still in a horrible mood...have to carry on as normal...Monty ( my daughters horse) is lame so farrier coming out in the morning so it goes on!!.. it’s bad when a horse gets new shoes every six weeks and I get them once a year!
I might rethink chemo but not now
Thanks for your lovely kind words and all the best
You have time to rethink it. It’s ALL chemo. If something is going to be your best bet, that’s what you go with. Awful to have a gloomy Onc. Mine is moody at times and the way she delivered my new normal really destroyed any hope I had. Now she seems more positive. As my friend said, who knows what was going on with her that day. The fact is the disease sucks and isn’t good news in and of itself. We have to figure out how to live with it and all the implications. Some days are tough. Be nice to yourself. You don’t have to be tough Barb all the time and you need time to cry and hash it out. Just don’t get stuck That’s when you need help. AND where is it written you won’t see 70 and a grandchild. Hugs again. ❤️
Well it’s 1.30 in the morning here and I can’t sleep so I thought I’d reread the posts from today and I was so happy to read your recent one
You always say sensible things and comfort me...nobody who doesn’t have mbc understands like you ladies on here
I’m going to try and sleep now...some milk first
Barb - there are different strengths and types of chemo so do your research before outruling your options. Chemo treatments have changed alot from the beginning of it's time. I have a client taking chemo for mbc and Nov 2019 she showed ned and still is! She is on taxol. One time three weeks out of the month. She is 66. She manages well on her chemo. She said she knows the day it makes her tired and just takes it easy that day. Keep the faith.
Stay hopeful. I believe you have the inner strength to keep fighting. Soon we will understand more about mbc and it will be a thing of the past. Until then we have to try and work with our doctors to keep us going. We have already come so far. We actually are survivors. Without our medical systems we would already be gone. I too wish I could have a cup of tea with you and give you a real hug. Love Marlene
Thank you Marlene for your positive post...I felt like that a year ago when the Ibrance letrazole combo was working and I just had pain to deal with
Now I’m in a different mindset and it’s not nice...I feel I’m not in control (obviously!) and I really think I’m going to have a short life...I’m hanging my hopes in the faslodex injections to give me some time...I’m also mad as hell that this is happening to me
I’m fed up of hearing about a ‘cure’ just round the corner....I was initially diagnosed in 1994 and my consultant said at that time there would be a cure in 15 yrs and my life wasn’t in danger...well none of that was true!!.. that’s why I hold no hope of a cure in my lifetime
Sorry for the gloomy post but I can vent on here
Of course you are allowed to vent and to feel despair. It might even be good for you to really allow yourself to get right into the full expression of your despair. I once went to a one week course where we learned to express our pain. We howled, we screamed as we walked in the woods, we pounded pillows and just said all manner of bad words. It felt good - and maybe it helped. I was young at the time and shouldn't have had so much pain. But my young husband had died and I was now a young mom with two children. And I was told my doctor (ignorant guy) to not cry. It took me over ten years to express the pain. After that I began to feel better. This course taught me something about how okay it is to fully vent our pain.
We all want to say now, now when someone grieves but that might not be a positive way to show concern. There might be a benefit to fully expressing that sadness. I just hope you are wrong about your future. I would love to learn that you are getting well. But I I know that all of the promises keep some of us dangling when we feel lost and want to just give in to the illness. Even though we cannot help you from feeling so sad I hope that we can say something that keeps you fighting. I have a friend who died recently from ovarian cancer and she left a very big whole in my life. We are all much more important to each other than we realize. No one else can replace us. You are now part of all of us. So I hope you can stay the course. Hugs Marlene
What a lovely reply...thank you Marlene....I do cry a lot especially in the morning when I wake and remember the predicament in which I find myself
I’ve found it hard to even get up but I do and get on with things...my escape is my horses as you may have gathered from my posts...without them I really don’t know what I’d do
I get very little support from my husband...he’s very selfish and goes off most days playing golf or cycling or running so I need my own interests
He offered to drive me tomorrow for my first faslodex injections...I refused...he just wants to act the ‘dutiful caring husband’ role....forget it...I need support on a day to day basis
My girls are lovely and very supportive but ones in London and they’re busy with their careers and homes etc and I never ask them to do stuff for me
So I cope as best I can and I have some nice friends
Oh dear I’m rambling on
All the best to you
Oh dear heart. I am crying for your sad situation. I think you should let your selfish husband drive you to your sessions. I know you don't trust him because he has been selfish but he might be realizing that you need him. We are all selfish in our own ways but sometimes we wake up. He might be waking up. I also think you should ask him to show more caring because, you can explain to him, that it will help you to have the courage to fight. Just come right out and lay it on the line. Tell him you need his comfort - his hugs around you and his words of comfort. Tell your daughters that you need them too. Ask them to telephone you from wherever they are at least once a week and tell you something funny or happy or difficult that is happening to them. All of you are obviously feeling lost. When my friend died recently she also had a very selfish - self-centered egotistical husband who didn't behave as if he cared at all. I just hated him. When she died we were at his place and his daughters were there too and I have never seen such an outpouring of genuine grief. This man's whole body shook. Although to me it was too late to help my friend but it told me that he hid his grief. How sad is that. But I think she was too mad at him to help him grieve with her. It is a viscious circle, I think. He is my husband's fishing buddy and that is how I came to know his wife. She was a real character and like I said I miss her terribly. Which is funny because we sometimes locked horns over political beliefs etc. But she became part of me and I am happy to have her as part of my memories. I really believe, and you don't have to listen to me at all, that you should give your husband a chance. And you should recruit your daughters. Just let them know that communicating with you helps you to carry on. I was in a down slump the other day when my delightful and also busy daughter called. It was like a light bulb came on in my being. I told her that her words are helping me stay strong. Just sharing her day with me is what i want. I have learned that going it alone is not a good way for me. My husband, bless his soul, is helping and sensitive to what I am going through. He lets me cry. Just his arms around me helps me pull myself together and carry on fighting. My arms are virtually hugging you. Say hi to Bugsy for me. Hugs Marlene
Thank you Marlene
My girls do communicate with me and I don’t keep anything from them
I’m very independent and hate to show weakness...I’ve always been able to control more or less what goes on with my life...but this situation has knocked me back and it’s difficult to deal with...I don’t want the pity treatment or feeling like I’m a pain/ burden/nuisance to him...he obviously prefers to be with his golfing buddies
Whatever you decide will be the right thing for you. It made me very pleased that you can communicate with your girls. I know this has to be hard for them. I just hope your gloomy doctor offers you some hope. It is wonderful reading all the posts from your warrior friends. We are all in the same boat - worried as hell about ourselves. But we have to trust someone and so we continue to try things and hope it works for us. All the best for you in the days ahead. Hugs Marlene
It pains me when someone feels alone, scared, not understood. This disease strips us to out rawest, most vulnerable selves. It’s so hard. I know I have never been so broken open. But, it has also made me more authentic. Wish it didn’t take this awful disease to learn so much. But, we don’t have control over so much in life. It’s so hard.
It’s so hard because you care so much, you love life so much, and cancer wears us down. As I deal with this awful disease, I often think of my beloved younger brother who was diagnosed HIV positive in 1987 at only 26 years old. He became my touchstone and role model. We were devastated but somehow he picked himself up. There were no treatments and he knew it would be a hard death. To our grateful surprise & joy, he lived well and fully until the spring of 1995. Then he really started failing and we could not fight it off for him, much as I wanted to. He was only 34 when he died in July 1995.
His loss broke my heart. But within hours after he died, as we grieved at our parents house, an old friend of his stopped at my family’s house. Her sudden unexpected appearance saved me. She was his very best friend in high school and just decided to stop her car when she saw the cars at our family home. She knew he was HIV positive, but she did not know how sick he’d become and was just visiting her family from out of state. I was so confused when she walked in, wondering how could she know so soon. But she didn’t. And I realized then, deep in my core, that this was a sign. A sign that his love lives on.
I’ve missed him for 25 years but I’ve also honored him by trying to live right. When he would despair as friends died right and left, I would comfort him and tell him that his main job was to honor them by living an honorable life. He did that even knowing what was to come.
I was 17 years older than he at my first diagnosis. I fought to stay well for another 17 years until MBC reared its ugly head. I think of my oh so young brother still, how he found a way to persevere in the face of a certain death sentence at the time. He remained loving, witty, charming and beloved while he grappled with death at a young age.
He wouldn’t think of himself as a hero. But as I held his hand in hospice, I marveled how brave he was to put one foot in front of the other every day for the past 8 years. He grieved and he then endured some more. So, I think of him, and ask for the same spirit to help me. And to have someone hold my hand when the time comes
I’m so grateful now when I see ads for pills to treat AIDS on tv. It’s remarkable to me that that awful disease is so easily treated now the pills are advertised on tv. I’m relieved no other family will suffer like so many did. I doubt that I will be around for the vaccine but I love my brother for showing me one way to handle this. I hope all of us can find a hero in our lives to remind us to keep moving forward to savor life as long as possible.
What a beautiful and moving testimony to your brother. I too admire his grace and engagement in life in the face of that awful disease. I started nursing school in 1984, just as AIDs was blowing up. In New York City. It was a very scary time and there were no antivirals and a few antibiotics for secondary infections. I’m amazed at his longevity given the facts of those times. An inspiring legacy. Thank you for sharing this very personal story. It will become part of my “toolbox” for living with
Thank you for sharing the story of your brave younger brother. When we are down we need to remember the bravery that some people exhibit when they are faced with the worst diagnosis.
I believe, we all have a chance to survive because every day somewhere in the world someone is working on helping us all get better. Bless those wonderful researchers. The scientists and researchers have already done so much for AIDS and they will probably do so much for us in the coming months and years. I have a nephew who is 52 years old now and he is HIV positive but drugs are keeping him well and he seems happy and quite healthy. he was diagnosed at age 20. Although he does rest every afternoon. I hope his HIV will also soon be a thing of the past.
My son recently told me that when he left home in his late teens - around 19 years old he reminded me of the time he came down with arthritis and IBS. I knew about the arthritis but I never knew about the IBS. I remember his knees were the size of basket balls - so swollen. I was in a nutrition class at the time at a local university and a guy in my class told me about Devil's Club. So my son and I went out and harvested big bags of devil's club from an uninhabited piece of land. My son took it home and dried it and he made tea with the leaves every day. He soon was cured of his condition - completely cured. Over the years I forgot about this story because the swelling and pain was completely gone from his life. That was about 30 or more years ago.
He only recently told me about the IBS so I asked him the other day how he cured his irritable bowel syndrome which I know for many is chronic. He said "with sleep". He said he learned how to have very long, deep sleeps. I was curious as to how one would go about learning to sleep deeply - because I never sleep for any longer than two hours - sometimes three hours and then I have to get up and use the bathroom. He told me it is imperative to have an absolutely black room. No light coming in at all and no clocks or electrical devices anywhere. He also mentioned making some dietary changes. But he thinks that learning how to sleep was the most critical element in his cure. He said to this day he can eat anything. I know this all sounds a bit fantastical but maybe he was on to something. We live in a house with big windows facing a big bushy area. My bedroom is well above the ground. Nobody can see in so I don't have curtains. So now I plan to get curtain rods in stalled and put black out curtains on them. And I will remove the clock and night lights that are on all night. Also I will put my cell phone in another room. If I experience any changes in my health due to these measures I will let you all know.
I know we have all been told how much sleep helps but do we really believe it and do we really get deep sleep. I know I don't and maybe most of don't get the healing sleep we need to fully heal. My heart goes out to Barb and to all of you who are trying to get onto drugs that help and heal you. I am stable at the moment but know it might not be forever. So I share your worries and I pray for all of us that we can heal. Sometimes I get down and just want to be rid of all the drugs and the doctors and go back to the carefree days when health just seemed to be my due. When I am like that I just want to let the tumors grow and then let me die. But I don't want to die so I have to get up again and stay positive and hopeful. When I get a phone call from my son and daughter and some other family members and a hug from my dear husband then I feel brave again. We all have lots of strength we haven't even tapped into yet. So lets stay happy. Hugs Marlene
Hello. I agree we do get down to our authentic selves with this illness. There is no room for pride or vanity in this illness. I was always so proud and I looked young for my age. I got so many compliments. I thought I had some secret formula or super genetics. But I have learned that I have to pay my dues just like everyone else. I don't like pity but I sure appreciate friendship during this time of deep personal growth. I think it is my strongest ally right now. Along with good friends, my husband's love and my children's friendship I keep going. They keep me from drowning in despair. I do get angry but I don't spend too much time in that place. I have had some wonderful moments with my son recently who was somewhat distant in the past. My illness has brought some real blessings. I have learned that I need to really remain in the now with my children so I don't have regrets. I know many of us experience too much pain and that is a real bummer to deal with. So we just have to keep sharing and caring. and encouraging each other. Thank you for sharing. Hugs Marlene
Marlene, your post really resonates with how I am feeling. Some days I just want to sleep the rest of my life away. But I don’t want to spend my days in limbo. My husband is amazing. I have caring friends. Living with and in spite of this takes so much energy and willpower. Some days I’m just not feeling it.
Hi again, I know how you feel. For days I was absolutely in a real funk. Low energy and wondering if the fight is worth it. Today I am happy and bounding with energy. I am never sure what is causing the rebounds in energy - maybe nutrition but not sure. I try to remember to feel gratitude for everything. And maybe some of my energy comes from you ladies because you share your feelings. I don't feel that I am alone. Anyone who doesn't have this sad illness just cannot fully understand. So we just hang in there and do our best to heal ourselves and continue to share our experiences. Take care. Hugs Marlene
Barb- Bummer that. We were all hopeful you’d get more mileage out of the other.
I ’m in precisely in the same situation, mets to liver (multiple locations) and pleura lesions on both left and right sides. Stopping Ibrance and Faslodex (21 months on).
Onc suggested taxol weekly or offered Xeloda. Given the negatives of both- and since I’ve retained neuropathies from earlier treatments- I’m going to give Xeloda a shot. Just hoping I don’t go immediately to burning hands and feet.
Keep us posted on next steps. It’s not time for
Any of us to lose hope! kc
I can’t feel hopeful at the moment as I’m so upset...I reminded my oncologist today that when we first met she said that this was a chronic disease and there were lots of treatments...I told her from the start that I didn’t want chemo yet she’s suggesting it now...just feel as if this is the slippery slope
I'm loving reading all this support for you Barb, take it in like a good stiff drink!
Personally, my slope got slippery the day I got my MBC diagnosis. Letrozole really stopped the slide, Ibrance accelerated it, Faslodex didn't really work, Xeloda (oral chemo) helped for several months and now Abraxane is putting on the brakes more. But it's still a slope that I'm trying to extend as long as I can find enough ways to keep enjoying the slide.
Getting a scan that showed my liver mets advancing is what changed my mind about IV chemo. It's a big organ that is amazingly regenerative, but it also controls a lot of important functions and we only have one.
One other thing about chemo, oral or IV...if you start it and can't stand the side effects you can stop. And you can insist on a lower dose. And have a choice about what you start with. It might be worth just finding out what chemo options your oncologist has in mind and run them by us. It's all just information and always your choice.
Hope you sleep better tonight!
Barb, my doctor was the same way. When I was diagnosed in January 2018 with MBC after an MRI showed cancer in my hip in December 2017 I was devastated thinking this was it. My oncologist said you could be sitting here talking to my ugly mug 15 -20 years from now. When after two years the Ibrance and Letrozole had allowed progression he said we could try Fulvestant but he highly suggested chemo.
I’m on day 8 after my first chemo and I’m tired but I take a high dose of hydromorphone cont twice a day so I think that causes the exhaustion. I had NO nausea whatsoever which was huge to me. That was my big fear. Some flu like symptoms but I have Zometa IV at the same time and I get those side effects from it. Just wanted to give you the info but each and every one of us understands that any medical decision is yours and yours alone. We are not here to judge but to support you in your decisions. ❤️ Sarah
I’ll do my best but there’s no guarantee that it’ll work...if not then there’s tamoxifen or I guess the dreaded chemo ....when I was having my transfusion today I was eavesdropping at a patient opposite...she was having chemo and the nurse was asking her the usual list of questions most of which she said she was ok with eg nausea hand and foot syndrome so she didn’t sound in a bad way but everyone’s different...it was good to actually see/listen to someone having chemo
So sorry to hear that, it didn’t work for me either. I had IV chemo after afinitor and after the side effects of afinitor it was a walk in the park. Unfortunately the IV chemo didn’t work for me though I understand it works well for most people, so i’m now on xolada. Comes with horrendous warnings but so far so good. The oncologist did say that there were still options to try even if this doesn’t work 😊 xx
I know exactly how you feel, I felt the same when I was told that afinitor hadn’t worked.
I was completely against having IV chemo again. I’d had it when being treated for primary breast cancer but it was stopped because it nearly killed me. But that treatment was completely different. My oncologist didn’t give me a choice, he told me that I had to have it.
I took part in a trial of Cabazitaxel which is given every 3 weeks the standard taxel treatment is given weekly. I suffered from fatigue, nausea and taste changes but continued working, even on chemo days. It wasn’t anywhere near as bad as my previous chemo. And I felt better than when I was taking afinitor.
For me quality of life is my primary goal. I want to continue working, doing my photography and living my life. Talk to the breast care nurses if you have access, they can give you a realistic picture of what to expect, it might not be as bad as you think.
Ps as you know I had fulvestrant with ibrance and for me it was a really good treatment. Hardly any side effects. I had a month on letrazole and it was awful.
Hi Barb, I can’t add any personal experiences on the meds so I just want to say —- We all know that feeling You are not alone in your battle.
I hope you don’t mind me sharing “the prayer to my guardian angel” it has helped me when I am feeling low.
“Angel of God
My Guardian Dear
To whom his Love
Commits me here
Ever this day
Be at my Side
To light and guard
To rule and guide”
Sending a virtual hug— Tara.
Gosh darn it Barb, I'm so sorry to read this. Having had a sudden increase in liver mets too I know this place.
I want to preface the rest of this by saying what you already know...you are the one in charge of your treatment choices and the only one who know what is right for you. Period.
But I also want to share that I'm having a surprisingly easy time on IV Abraxane (easier than Xeloda) and my cancer marker dropped 200 points the first month. Liver enzymes are moving back toward normal too. For years I was on the "never chemo" team and this was a hard choice to make, but I'm grateful now for it. I did lose my hair and my fingernails look awful but really don't have other side effects that are messing with my quality of life.
Whatever your decision, know that we are sending support from all our corners of the globe. You are a precious member of this community and we want you back in the saddle!
I am also on Abraxaine. I finish my second round tomorrow. After 1 month one marker when from 4400 to 2200 the other wheat from 3800.to 1600. I so hope they are still going down.
My side effects are feeling weak an mouth sores so far. Oh yea hair fell out again. I was so nervous to lose hair last time now it means nothing. Just want it to work for awhile.
So happy to read about your markers dropping so much! My have stabilized at 135 the past few labs....way better than what they were and I feel good.
For mouth sores, I swish with a baking soda/salt solution (1/4 tsp salt, 1/2 tsp soda in small cup of water). I have a cup on my counter and swish several times a day between meals, before bed, and even if I wake up in the middle of the night to use the bathroom. It seems to help keep the PH in my mouth balanced and I haven't had may issues with sores. I also have a prescription "Magic Mouthwash" that has Lidocaine in it....if your sores are painful this will help numb and heal them. And I agree about the hair. It was freaky when it first fell out but now I'm just used to it and have an amazing collection of scarves and caps, plus one nice wig in case I ever go out again.
I will try that right now. I have the magic mouth wash, nystatin mouth wash, aura gel rinse for sores and levequin for a week. Valtrex and anouther special blend, so far nothing is helping. My blood count today was 2.2 so they were not going to do treatment. Doctor said I will do it if you want because it is the third of round and we will will do injections to bring count up. Those tumor numbers were impressive and I would hate to lose the set.
I said go ahead I don't want to lose them either.
You sound well stocked for mouth sores already! The salt/soda rinse probably won't have the immediate affect of some of the others, more of a longer-term healing and preventive. I never made it to 3 weeks in a row with Abraxane due to low counts; I did 2 weeks on/1 week off once, but then needed 2 weeks off. Since the beginning of this month we switched to 1 week on/1 week off. It's been great in terms of side effects, I hope the marker stays down too. With your markers dropping I would have gone for today's treatment too. Just plan to be a cat all weekend, nap when you need to and look forward to a week off. I wish none of us were on this stuff but it's nice to have friends on the same treatment to compare notes.
I'm just starting to feel some twinges of neuropathy in my feet. Will get acupuncture next week to help with that.
Barb I'm so truly sorry to read this. It is hard to know what to say and you have to make whatever decision feels best for you. We will support you no matter what you decide. However you know I'm a positive, stubborn woman and my fighter instinct side of my mind will say that nobody knows how long we have on this earth and you are a unique individual and strong and stubborn(which are very good traits with this disease)and can beat these odds, positivity and determination go a long way. Today is for calming your mind, crying no doubt and yes anger...but I'm certainly not giving up on you.....I have no doubt you can beat this beast back for many years yet. As a long-term nurse who has worked oncology I must say I also used to as a healthy person say that chemotherapy treatment was not for me. However things change when you are faced with the decision personally. Chemotherapy treatments have changed so much over the years as well as dose adjustments can be much lower than when the main goal was cure .....quality of life now is the goal and you can work with your oncologist on this. All the treatments on paper have horrid side effects but we all don't get them. Your determination and spunk has been such an inspiration to me and that of most ladies on the board. In my mind I'm fighting right along with you and I just gave that cancer a kick for you. We are all here for you Barb. Take care.
I haven’t had genome testing and when I mentioned it today my oncologist didn’t seem interested
Did you try everolimus and exemastane after Ibrance?.. or did you go straight to fulvestrant?
I’m certainly going to be glad not taking pills as my poor bone marrow is suffering
Hope I’ll perk up after the transfusion on Friday...want to ride my horse while I’m still able
Thanks for cheering me up about fulvestant...can’t be worse than last regime
Hi Barb -
If you haven't had the genomic testing, does that mean that you don't have Piqray/Alpelisib as one of your treatments, past or future? Something like 65% of women with hormone receptive MBC have the PI3K mutation that this treatment targets. It's what's queue up for me next, even before Extremestane + Everolimus.
Yes I’ve been full of hell since I got back from the hospital tonight and I’ll confess to drinking the best part of a bottle of wine...well it is a hot day!..felt like chucking the empty bottle through the kitchen window but restrained myself
I’ll try the injections and see what happens...
Thanks for your support
Dear Barb -
I'm truly so sorry! Please know that I'm thinking of you and wishing you the best. I hope the injections work well for you; I'm optimistic for you, especially after reading what others have share about how they work differently from your prior treatment.
Please take care and remember that you have many women all over the world rooting for you! 💜 Lynn
Oh dear Barb. I haven't been here in awhile then saw this. I am so sorry.
Everyone has already given their best advice so I have nothing to add except the irritating and obvious--take it one day at a time. It sounds like you can try the Fulvestrant and if it doesn't work, figure it out from there. My daughter, who's name is Honor, refers to sthings she doesn't want to deal with right away as a "later Honor issue" So perhaps Chemo is a "later Barb issue?"
Unless you are being pressed to make an immediate decision, you don't have to decide anything right this minute. I find that trying not to plan more than a few months in the future is helpful--otherwise I spiral into gloom. It's OK to put some blinkers on.
I also agree re the genomic testing--it can't hurt.
You are right Barb. I was off all meds from Jan 2018-June and from July 2019-Jan 2020 and numbers stayed about the same before taking a big jump up. And who knows how high is too high. Most doctors don't use tumor markers at all.
So who knows the right answer. But I am no sure how long I can put myself through these side effects.
And I felt great taking a break. Had energy and enjoyed the hoilidays.
Yes barb faslodex injections are not that bad. The only thing I ever really felt was when they first prick you on injection and as long as you tell them to go slow when they are giving the injection after you warm it up you should be fine. So you are almost the opposite of me. I think I may be going to afinitor and exemastane next. It concerns me that your liver Mets got worse on those meds and that is what I may be going to. I'm kind of surprised she didn't try you on ibrance first before afinitor. My healthcare plan is currently to go from conservative to aggressive as I was diagnosed de novo. Even though I'm now progressing I've been pretty happy with that approach so far.
Sorry Barb that the Afinitor and exemastane haven’t worked for you and hope the Fulvestrant injections do.
Did your onc not give you a reason why you shouldn’t have genomic testing ? Good luck with the iron infusions and I hope you are able to get out with Bugsy in the lovely weather we are getting . Keep fighting ! Much love x
I’m so sorry to hear this Barb. Fulvestrant worked for me and I would still be on it except that I can’t go to hospital for my injections so my oncologist changed it to Letrozole. I can’t really say if the Letrozole is working as well as the Fulvestrant until I have my blood tests and scan. But I can tell you that so long as the injections are done properly, the side effects of Fulvestrant are almost nil. I do have hair thinning but I don’t know if that is due to Fulvestrant or Ibrance. My onc did say that if my blood test shows progression, I will have to go back to Fulvestrant.
On another note, if you do decide to try chemo, there is Xeloda which is oral and not IV infusion. I have heard that it works wonders and many people manage the side effects quite well.
Hugs from the other side of the globe!
Barb — I am so frustrated that you've had this turn of events. You are diligent about your treatments. It’s maddening and so disheartening.
I completely understand and respect your no chemo position. Chemo was very hard for me my first two times around. I expect I will make a similar decision one day. But it sure isn’t fair for you.
Please please please know that I am sending my support and compassion. We are here for you.
I’m so sorry about this crappy situation. I’m same age as you (Aug 1954) -at this point, quality of life is more important to me than quantity of years. I had high dose chemo after surgery years ago when I was first diagnosed. As of May 1st, I’m on Fulvestrant only since I struggled with severe neutropenia after 8 cycles of Ibrance. Fingers crossed and lots of prayers this does the trick for both of us ...and all the others out there. Hang in there...God Bless! 🙏❤️
Been on Fulvestrant since last Aug (combined with Ibrance). The shot isn’t too bad...stings a bit and there’s a hard knot at injection site for a few days. But little to no side effects. I sit on ice packs on the drive home - cold seems to help any swelling compared to some who swear by heat after. I’ll know from next scan in another month if Fulvestrant is doing the job without the Ibrance.
Hi Barb, you and I have both been at this a long time now. You had a great run with the Ibrance for a long time if I remember correctly. I did Femara infections but only got about 8 months before new lesions began. I have had great success with Xeloda since 1/2019 and still going. It has some harsh side effects but it is still oral which I am a fan of. No IV for this gal til I absolutely have to.
Ask your doc if you can try it? Stay Strong and God Bless you Barb. Prayers coming your way
Barb, I haven’t checked in since last night so I just saw your note. I’m so so sorry! Give yourself time to grieve the loss of hope that your last treatment would be the one. It is just to hard to make good decisions while you are sad and mad and grieving. I read everyone’s comments, they are all such good supportive words. All of our good thoughts and hopes are surrounding you right now.
One of the recommendations was to get genomic testing. I know you haven’t been offered it, but maybe it is time to ask why they aren’t. Unless they have a good reason, it’s time to be that rebellious person who says, I want it, now!
I was on Ibrance and Letrozole until the first of the year when that started failing. Because Ibrance had worked very well in the beginning, my onc wanted to keep me on it, so now I’m on Ibrance and Faslodex. I’m not minding getting it and my last scan showed improvement. I think I’m a little more tired than when on Letrozole but that’s the only difference. I wouldn’t even think about chemo until the time comes to think about it. One step at a time. When it is right we all will pick the time to step off this merry go round but it’s not right for me and I don’t think it’s right for you. You still have time to ride Bugsy and see those grandchildren!
Sorry to hear this rubbish news. I’ve recently had liver mets progression. I had my tumour profiled and was found to have an ATM mutation. I’ve just started an ATR inhibitor trial that targets the mutation.
I’d say, it’s definitely worth having your tumour profiled. There are a few different mutations that can be targeted and some clinical trials are still recruiting despite the virus.
You can have it done privately. It costs around £2000 in the U.K. I believe.
Look up Oncologica.com
I am sad to hear what you are going through. It does get exhausting sometimes trying to keep fighting and stay positive, and of course we all have our very bad days. I really hope the next treatment works for you and you are feeling better soon. We are all rooting for you. You’ve got this.
Oh Barb 😞. I’m sorry to hear this. I just finished my first round of chemo (day 8) and it is nothing like what I expected. I know it is a personal decision but ask your oncologist which chemo drug they want to use. Mine is well tolerated with no nausea. If you want to talk more please send me a direct message. I can explain what my chemo experience has been so far. Hugs Barb ❤️
So sorry to hear this, Barb. I hope the Fulvestrant works for you.
My friend is a 5 year mbc survivor and she is currently on low dose Xeloda. She has been on it for over a year and she is doing well. No significant side effects and she has not lost her hair. (She's also doing COC).
So there are other options and perhaps it's not as bad as we think.
I wish everybody was working as hard to find a 'vaccine' or cure for mbc as they are with Covid-19!
All the best and I hope the next line of treatment works well for you.
That is good news about your friend. Let's hope we can all live for many years with this disease until the cure comes.
I feel the same as you when it comes to trying to find a cure for our disease, as well as COVID-19. My husband gets so upset when he hears about it in the news, but yet we are still having to live with this disease.
I’m sorry For your news. I, too, have extensive And numerous liver and bone mets. One liver met was 8 cm’s a few months ago and I was starting to have pain and swelling. I went on Xeloda chemo pills and I’m a whole lot better. They were rough the first few days until they lowered my dose and now I’ve been stable for a few months. I still have my hair. Just suggesting not to rule chemo out. Progression and new treatments are really scary, but once you find something that works, life gets better.
I didn't see this post from yesterday until today, otherwise I would have responded sooner. I am so sorry to hear your news. This must have come as such a shock. I hope you have been given some time to think things through before you decide what to do next. Please keep us posted on what you decide to do. Hopefully your new line of treatment will prove more effective than affinitor and exemestane.
If you want to email me for a chat, please feel free to do so. But if not, that is fine too. No pressure. I just want you to know I am available if you want to talk.
Barb, I am so sorry that you are having to change drugs again. There is a comfort with staying with one treatment. Unfortunately, MBC is a cancer that outsmarts our drugs and then we have to change again. We will all go through that unless a Mack truck runs over us first. I am sending you prayers, hugs and best wishes. I am asking our Lord to fill you with peace as you find the right treatment for you. Blessings, Hannah
Barb, I'm very sorry to hear this news. I'm a long time on Fulvestrant and the shots can be painful, they're quickly over and the side effects are few and tolerable. Please don't write it off. Also, many on here are saying some of the chemos aren't so bad, so that's a good thing. I'll be thinking about you today, please sit back and let your feelings out. Scared would be the tip of the iceberg fir me.
Barb I am so sorry.I was wondering how you were getting on and missed reading your posts . Sounds like a lot of people did well on Fulvestrant , especially as you lasted quite long on Ibrance .Why are you refusing chemo?Just started my 3rd cycle of taxol and apart from weight gain from steroid pre-meds and hair loss I have no side effect... They even offer cold cap to reduce hair loss ( tried it once, found it very painful and not worse the effort but it is different for everyone)... Crossing fingers for Fulvestrant ...I found it quite easy to, I think the main issue is to get a nurse that takes her/his time administering it. It is quite a thick substance so the slower the process the better the outcome ( pain wise)... Thinking of you and hoping you feel well enough to ride this gorgeous horse of yours and that you are not finding too hard not to be able to see your girls...
Just to say ... I’m thinking of you and sending you a hug. Like you, I’m anti-chemo but I guess when there are no other options it’s worth a try.
I understand when you are stage 4 they do their very best to give you just enough chemo to zap the C whilst trying to reduce any side effects.
You are a very brave & beautiful lady with two stunning daughters. Do what you think is best and I hope & pray your next treatment is successful without too many side effects.
Hi Barb: Sorry to hear about the results. I do think there are many answers out there for you even if it means chemo treatments. Some people tolerate the chemo quite well. I think they have improved the meds and the dosages. Good to look into.
I have had the same aversion to chemo that you have but am slowly changing my mind. The key word is slowly!
Cheers, June S.
Barb, I am so sorry to hear you are facing a treatment change. For what they're worth, here are some thoughts:
Faslodex alone, as you mentioned, is certainly an option
So is Tamoxifen or Fareston (a sister drug), as you mentioned
Xeloda on a lower dose (below are studies indicating equal if not greater efficacy)
Believe it or not, ethinyl estradiol is also an FDA-approved option, counterintuitive as it sounds. Since it's so unusual but sometimes effective, there's detailed information about this in my book and complimentary .pdf at insidersguidembc.com
Wishing you a good outcome, whatever you decide!
Counterintuitive as it may appear, estrogen can be administered once hormonal therapy resistance has developed in postmenopausal, hormone receptor positive patients. The “estrogen paradox” refers to the fact that on the one hand estrogens are known to stimulate the growth of breast cancer, whereas on the other hand high doses of estrogens are an effective treatment for this disease. The “gap hypothesis” refers to the fact that High Dose Estrogens (HDEs) are only significantly effective when the breast cancer has been devoid of estrogen exposure for a considerable amount of time, either because the patient is postmenopausal for at least five years or due to long term anti-estrogen treatment.
When estrogen-lowering drugs no longer control metastatic breast cancer, the opposite strategy might work. An excellent summary of multiple studies using various forms of estradiol on Aromatase Inhibitor-resistant MBC patients (with favorable results varying from 26% to 56%) can be found on the last three rows of a Table located at sciencedirect.com/science/a...
The above link cites a small 2015 study in which 19 postmenopausal ER-positive, AI-resistant MBC patients were treated with low dose estrogen - 2 mg estradiol valerate (E2 V). Clinical benefit was observed in 5 patients (26%), and all five of these patients had stable disease ≥6 months. Four of the five patients were “re-challenged” with the same AI as on which the cancer had progressed and three of these patients (75%) showed evidence of re-sensitization, achieving clinical benefit for a second time. (My note: It should be noted that there are toxicities relative to estrogen treatment).
According to a 2009 study of 66 MBC patients whose hormonal therapy failed and who were facing chemotherapy, raising estrogen levels benefited 30% of these women. Not only did estrogen treatment often stop disease progression, in some patients’ metastatic tumors became “re-sensitized” and again responded to anti-estrogen treatment. Another study compared a high 30mg daily dose of estrogen to a low 6mg daily dose, and 30% of patients both groups experienced a clinical benefit: their tumors either shrank or stopped growing. Researchers demonstrated that they could predict fairly accurately which patients would have this positive response. They conducted PET scans before estrogen treatment and 24 hours later. If metastatic tumors flared, or glowed more brightly, in the PET scans after estrogen was started, they were much more likely to be affected by estrogen therapy. news.wustl.edu/news/Pages/1...
Some patients responding and then progressing on high dose estrogen therapy may then respond again to estrogen withdrawal. Occasionally MBC can be controlled for many years by initiating and then sequencing high dose estrogen with estrogen withdrawal over time. One MBC patient with bone metastasis had their disease controlled for over 8 years by alternating cycles of high-dose estrogen with estrogen withdrawal 3 separate times. ncbi.nlm.nih.gov/pmc/articl...
Very useful info Bestbird. I wish I was post menopause.
My ER+ score 8 cancer is, and always has been, endocrine resistant. I’ve had fec-t, tamoxifen, zoladex, palbociclib, letrozole and absolutely none of these worked.
The only drug I’ve had success with so far is capecitabine.
I don’t have an ESR1 mutation. However, I do have an AKT1 mutation so possibly Everolimus and exemestane may work in the future, as I believe patients with this mutation have been shown to have an increased response to Everolimus. 🤞
I’m currently on an ATR inhibitor trial targeting my ATM mutations.