My latest PET scan shows excess progression to the lung, trachea, oesophagus, multiple vertebrae, pelvis, and now to the liver. I’m devastated because Ibrance failed and now I’m doing the 4th line of treatment in 2nand a half years. I’ve just started Halaven and I’m exhausted of the mental and physical strain.
Can anyone share sim8lar experiences pls in regard to how to deal with such adamant progression and experiences with Halaven. I’m devastated and on the verge of giving up 😢
Dear Monalbaki
I do not share your clinical picture, so I cannot offer advice on your chemo or how to handle dealing with this multiple progression. I can only imagine what I would feel and how I’d react much in the same way that only women with MBC have any inkling what we experience and feel, and how some days we are just utterly depleted emotionally and physically. However, I don’t want you to feel alone. I want to offer whatever support I can at this great distance behind this screen. Did you have a conversation with your oncologist to discuss your treatment and what you can hope for from this chemo? Is there a trial you might be eligible for or another opinion if you have the energy and resources. Do you share your feelings and fears with your oncologist and with a therapist? Do you have solid support from loved ones? Is there something you can reasonably do during this treatment that is a diversion from Cancer? I plan trips. Whether or not I’ll get to go on them, I love reading up on new places and planning. Do you have a faith based practice that brings you peace. I have discovered Buddhism and lean in on it when I am down and feeling hopeless. Some people don’t want to take meds for anxiety, but for me an antidepressant and an anxiolytic makes a big difference when I am on the edge. Are you getting enough sleep? Being sleep deprived on top of all of this will make things worse in multiples. I feel for your exhaustion and feelings of having had enough. I hope you are surrounded by people who can support you, listen to you and care for you so that you can focus on going forward with what is the right path for you. Have you thought of calling the SHARE hotline? When I felt really dark and hopeless I reached out to SHARE and it helped. I am sorry I cannot help you with solid information about your next round of treatment and I hope you find the guidance you need. I hope this chemo brings you the best possible outcome. Hugs. . 💕
I could only hope to have written this half as well as you did. Ditto from this fighter.
Thanks a lot for your warm reply. I don’t think that clinical trials are an option because they can place me on placebo. All I have now is the good wishes and heartfelt prayers of friends as kind as you.
Hugs xxx
Damn this disease!! I can’t share any words of wisdom or shared experience with where you are right now but I am sending so many wishes for peace your way. Try to stay strong fellow fighter. Remember that this next treatment could knock back the new cancer cells as fast as they appeared.
hanks my dear for your support. I’ve been to Penny Brohn a few months back and they were a great help. I am giving up and I don’t feel hopeful this time. The progression is overwhelming and scary. I can breathe with difficulty because one of the tumours is blocking the entrance to one lung while I have pleural effusion on the other. My doctors hopes that the medication can clear them. Lots of love xx
I, too, have experienced progression despite multiple treatments. I was diagnosed with metastatic breast cancer (bone metastases on literally every bone in my body (right out of the gate in December 2012. I was in the chemotherapy combo, Taxotere, Gemzar, and Xeloda. I was in remission for just under 2 years when I had two very small spots show up in a muscle in my back (the Latisimis Dorsi). I had been on the hormone blocker, Femara (Letrozole) and it had stopped working. Then we tried Faslodex and it, too, failed. We then tried stereotactic radiation which caused my cancer to return to my entire spine and multiple ribs, the two very small spots in my back bacame one very large spot. And I had numerous affected lymph nodes. I can't remember the order of treatments but I was then on each of the following until they failed: Xeloda, Ibrance/Faslodex, the "Red Devil", Eribulin, Vinorelbine, Gemzar. (May have missed one). Oncologist sent me to University of Colorado cancer center for a clinical trial. It failed immediately. Just started Carboplatin/ Gemzar. Somewhere along the line I developed metastatic skin lesions on my back so we are interrupting chemo for 10 rounds of radiation for that. Don't know results of the radiation yet as I'm just on my 5th treatment. Also, since initial treatments I have had lots of problems with plural effusion so I'v been on oxygen. And, as a side effect to the steroids used with chemo, two years ago a weakened diverticulitis ruptured so I had a temporary colostomy for 4 months. I keep chugging along but discouraged when a oncologist says: "you know you don't have to have treatment".! What the heck, sorry I've lived too long!!! Bottom line, I still have some fight in me! So ya, although my cancer should do well with treatment (since I'm ER/PR+, HER 2 NEU-, I have not responded as well as I would expect.
So sorry you have to go through this. This is a terrible disease beyond words. Sometimes I wonder what I’ve done to deserve this. None of us deserve this. One “friend” told me that this is karma!!!
Thanks for sharing your experience, as hard as it can be for you to talk about it. We are in this together and nobody understands our ordeal than our met sisters.
Sending you healing warm hugs dear sis ❤️
This is a terrible disease, like living life as a roulette game as we never know where or when we will land!!! Your “friend” should be ashamed of herself for saying it’s karma!!!! What about small children that are born with illness, is it their karma too? Just awful!
I have always dis liked the phase , every thing happens for a reason. BS life is mostly genetics and fate.
Monal you must know you have done nothing to “deserve” this. Yes there are risk factors, and I have quite a few, many I could have controlled. I had to get beyond the thought of “have I killed myself?” Because going over and over that was destroying my life even more and I was in absolute panic. I had an uncle who drank heavily and smoked for almost all of his adult life. In his case from about 18 on. He died at 90. Not of lung cancer or liver cancer. Not of any cancer. I have long given up on thinking life is fair or unfair. I have accepted that I could have done things differently but I truly have done nothing so awful to deserve the hell of this diagnosis. My mother had her first mammogram at 74. She had breast cancer. She had a lumpectomy, radiation and tamoxifen for 5 years. Lived to 95. . Everyone in my family who had breast cancer beat it. I had to let all that go and sometimes I still struggle with trying to rationalize this. It never takes me to a good place. I feel lame offering you my prayers and good intentions. But I am pulling for you. 💫
Sister/Warrior my heart goes out to you, but if you say a" friend" said this is karma. I wouldn't call this person a friend or friendenemy as the young people in America say. This person is someone you must keep as farrrrrrrrr away from you as possible. You neeeeeeed only positive people/ loved ones around you, especially now. I pray the God I serve will give you comfort, and peace in the form of stability, and or NED in your upcoming scans. Tears are an emotional release, so cry for a moment, but gather your strength, that I know you have to fight another day. I know it is easier said than done , but we your sisters stand in the gap to try to give you the support you need at this challenging time. There is no problem to big for GOD. Please keep the faith, my sister, and yessssssssss ( Warrior). XoXoXoXoXo
Damn you are a Fighter ! I hope I can be a strong as you. My mom is !
Thank you and have a wonderful holiday
Sorry you had to experience all of this . My question for you , was the stereotactic radiation worth it or was it more an aggravation from what you wrote? I am confused with the research backing it up , yet feel it impacts people’s bone narrows more so. Seems like a catch 22 .
Hello, Mona. First of all, your “karma commenter” is NOT A FRIEND! None of us need or deserve blame for what is, in most cases, likely caused by genetic mutations. I would certainly hope that you are able to keep her/him out of your life.
I agree wholeheartedly with replies above and would add the possibility of CART therapy, a targeted therapy being used now in many types of cancers, including MBC. Is there a family member who can reach out to your oncologist or better yet, get a second opinion about currently available targeted therapies?
And finally, ALL OF US know that we have a choice about continuing treatment. Your oncologist does not sound proactive. He/she should be keeping you informed of current research rather offering a thinly veiled shrug.
My heart and prayers join EVERYONE in this group in wishing you continued hope and success in this fight! You are truly courageous!! May God and Mother Mary shine Their healing light on you in the days, weeks, and years ahead! 🙏🏻🙏🏻🙏🏻🙏🏻❤️❤️❤️❤️ Linda in Seattle
try to just take it one minute at a time. there are so many things they can throw at cancer and you have to keep trying. it is exhausting and a pain in the ass! but keep your chin up and just enjoy your life. let your doctor worry about the cancer. i'm on my third thing after ibrance was a disaster and a trial drug worked for just 6 months...but now i'm on a great med and it is working. you just have to keep keepin' on. you don't want to feel like you didn't give it all you had. but let yourself be sad and down - call a friend. go to the beach or water... just practice self care. naps, sleep, wine, and as much tv as you feel like watching!
Have you seen an oncologist who treats nothing but breast cancer? There are very specialized oncs like that and they tend to be on top of all the latest research. If you haven't, ask your own on to refer you to somebody like that. This cancer comes in so many different forms! It's as unique as we are and standard treatment is not the same for all of us and doesn't work the same for all of us. And some is just a whole lot more aggressive and hard to manage than others. I hope you will find what you need to have peace of mind. It sure is not easy!
I would see about immunotherapy at Steven Rosenberg's lab at the National Cancer Institute. They are taking people with breast cancer and I know one person who has been in complete remission for several years. Helen Schiff
just google steven rosenberg breast cancer National Cancer Institute. It is experimental. I know someone he cured she is ER+ but also someone died of the treatment. While you are being treated you stay in the NCI hospital I think.
I too am feeling devastated. I am starting my 5th regimen as others have failed It is so sad and scary. I am 2 years into MBC, started the cancer journey in 2011. I keep telling myself, I have a choice. Fight...or...surrender. I have been in a very dark place the last 4 weeks and trying to crawl out. Know you aren't alone. As much as the odds are against it, I am still praying and hoping this next regimen will produce some good results. I pray and hope the same for you! Hang tough pink sister!
Dear Monalbaki, I am also on Halaven right now and have been on it since the end of August. This is my third time having my breast cancer come back... first diagnosed in 2000... went through a bi lateral mastectomy with reconstruction and chemo. Then it came back in my lymph nodes on my neck in 2011. I was on Xeloda and I also had radiation. Everything looked good for a while and I prayed I had gone through it for the last time, but I had a routine scan in January of this year and found out that it had metastasized to my liver and bones. My doctor put me on Ibrance right away, but after several months it wasn’t working. I was then on several others that I can’t remember the names of, but they weren’t working either, so now I’m on Halaven. So far it has been helping to shrink the liver tumors and some of the bone ones. I have lost most of my hair and I don’t have a lot of energy, but that’s about the worst of it. I’ll have another scan next month to see how things are going. I completely understand when you talk about the mental strain. It never stops. This is a horrible, horrible disease that no one deserves, but it’s comforting to be able to talk with people on here about it, who understand what you’re going through. You are not alone my friend and my prayers go out to you.
Thanks a lot for sharing your experience. I’ve lost all my hair and my sons immediately shaved thier scalps. Somehow this helped me in spite of the fact that I asked them not to do this. But once they did it I felt that I was not alone in this. Now I’m having a terrible flu and my chemo is scheduled for tomorrow (working during the weekend in stead of Christmas). I guess that they will let me have it because if the long holidays. As if I’m not going through enough. This disease broke my soul. I hope that I’ll regain it in the afterlife, if it does exist. I pray that I’ve paid my dues especially that I’ve been able to stand this most of the time. I don’t know if I have become stronger or if this is how people with broken hearts and souls act.
Happy holidays. Thank your lucky stars that we are still here to celebrate this year
I hope you had a good Christmas and were able to spend time with your family and that you are getting over the flu. It sounds like you have a wonderful support system with your sons who obviously love you very much. I also feel very blessed with my children, husband and family. I couldn’t ask for more love and support from them. It’s still hard though and many times I feel so lonely and depressed. I know they would do anything for me, but no one really knows what you’re going through until they’ve been there. It’s so nice to be able to talk with you and these precious sisters on here who understand. I had my chemo treatment yesterday and found out also that one of my tumor markers had risen almost 40 points since 3 weeks ago. I’m trying not to freak out, since I have also been very sick with a horrible sinus infection and cold and I know stuff like that can affect the numbers. I have a scan on January 7, so that will tell what’s really going on, but It’s so hard not to worry. I know what you mean when you say this disease broke your soul. Sometimes I feel like I just can’t keep on riding this horrible roller coaster of ups and downs and downright terror. It’s so awful, but then the next day I think I have to keep trying. I have to. As far as an afterlife, I also pray there is one and that I have lived a good enough life to get there. My thoughts and prayers are with you, my friend.
Mona, is it the side effects of halaven? Ibrance tends to only last on average of two years then a new treatment to something else ! Don’t ever give up, there are numerous options and treatments. Please get second opinions.
I just started my 3rd cycle of Halaven, which is my 4th line of treatment in 3 years. I was on Taxol for 8 months previously. The Halaven SE continue to be the same. Fatigue is my biggest problem; I can barely do anything. However, I have a few good days when I can walk and ride my recumbent bike. My best time is during my week off, when I’m upbeat and very happy. I’m still learning to give into the fatigue after these years, but as an active person it’s hard.. I hope that the Halaven works for both of us. If it does, it’s worth the side effects.
Neuropathy - Halaven 
First line of treatment 
Mbc and 2nd line treatment 
Eribulin (Halaven )stopped working 
CT Scan with New Liver spots😪, next treatment? (Ibrance & Letrozole 18 mths 1st line)
