Brain mets in addition to lung, bone and liver

[sparks4me]

As I'm reading the posts on this site, I am amazed at the wisdom you all have. My original breast cancer was 18 years ago. One year ago my journey began again with mets in my brain, lungs, bones and liver. I am 63. I am ER+ and HER - . I am on Ibrance 75 and arimidex. 75 because of low wbc. I had radiation to a spot on spine so I could continue to ride/train horses. Question: I'm reading about so many of you who have been on treatments successfully for 5, 10, 15 and more years. Mostly, it seems the biggest issues you all have, or mention, are the bone mets. Does anyone else have mets in brain also? If so, how is the treatment going? I had SRS (gamma knife) a year ago; there were 18 mets treated. My scans show everything is getting better. My tumor markers stay around 500-525. Question 2: Some of you are discussing pain and I'm so sorry about that. Why is there pain if your treatments are working? Is the pain happening between treatments or because one line of treatment stopped working and it took awhile for next treatment to kick in. Thank you so so much for your replies. Lori

[Contrarielle]

Hi Lori, great to hear you have horses to enjoy life with. I am lucky and to date have only bones mets and nodes . Not much pain at all on current treatment, had aches on exemestane. My partner's friend, also in New Zealand only found out she had MBC several years after original low risk BC when she had sudden seizure and brain mets found. She's a few weeks into radiotherapy and chemo and seems to have kept her sense of humour which is great. A friend of mine discovered she had melanoma mets in brain the same way a few years ago. Had surgery, radio then has done brilliantly with a biologic agent for melanoma. Hard to know what future holds for all of us but I figure every day I can enjoy life is a good day. Good luck!

[sparks4me in reply to Contrarielle]

Thank you, Contrarielle. You are so right, about enjoying each day! Enjoy today!

[blms in reply to Contrarielle]

My dad lived 30 years with melanoma and many massive scars and no meds. Then it returned in his skull (deep and aggressive told he had 3 to 6 months to live. That was in 1997 and I had guardianship of him beginning a year before this. His melanoma spread to the meninges of his brain and given a gruesome diagnosis and death. Well, he died--not of melanoma but unrelated issue in 2011 which was 15 years after being told he would not live and have a horrible death. Okay that is totally crazy but completely true as I had guardianship of him all that time. How he survived all those years no one can explain AND he had NO oncology treatment at all!! Wow, sometime I ask myself what to do, we all have to continue to do this and question what else we can do. Now they do have some great biologic agents for melanoma ==this is very good news !!

[sparks4me in reply to blms]

That is amazing! Sounds like divine intervention to me! Thank you for your response; so much appreciated. Lori

[blms in reply to sparks4me]

Yep, I want to be like HIM!! And handled all with such grace. I am not so good at that aspect. I have lived 24 years with BC but when it went to my liver, I figured it was a quick death sentence because that was my history of family. I am grateful for new meds--although not terribly trilled with taking them and freak out each time it is a new one not know what to expect, etc. What a journey!! Thank all of you for being here for one another!!

[MyMiracle13]

Hi. I am 63 too and have the same Mets as you - brain, lung, liver and bones. I had WBRT as I had numerous bone Mets which they said were too many for SRS. To manage my other Mets, I am taking Xeloda and Navelbine. My first line of treatment was Ibrance and Fulvestrant but they stopped working after almost 2 years.

[sparks4me in reply to MyMiracle13]

Thank you. I hope your new treatments have few side effects and you get to do things you enjoy. Lori

[Cureforever]

Hi Lori,I have bones and liver and was on the treatment you are now for a year until the progression after having bone only. I was initially diagnosed in 2019 after 9 years in remission and have gone through five lines of treatment. I am on a chemo pill xeloda now. My doctor is saying that it doesn’t matter how many spots you have Mets in as long as the treatment is working. My cousin has Mets in brain, was diagnosed 4 years ago. She is on Piqray now but for me it was not working because I had a severe allergy. She also had radiation in her n

Brain. She is doing fine. I read many optimistic replies to your inquiry and would like to add mine. This disease is a big burden to carry on and I have anxiety here and there when I think about it. However my doctor is saying that it’s like a chronic disease that has to be treated. On a positive note I hope for new drugs that are coming. I have a big faith in ErSO, the compound that is undergoing Pre-clinical trials and showed 99/100 success on mice. The articles were saying that if proven successful in humans it may be a cure or a very effective treatment. You may read all my posts if you research ErSO. It eradicated all human Mets in mice including brain within three to seven days and they did not come back within a 5 months period the mice have been observed. Mice live 2 years. It means 20 years in humans. The pharmaceutical company Bayer obtained exclusive rights for global production and are doing preclinical trials. I and many people here have faith in ErSO. I hope the signs I see everywhere “Let’s end breast cancer”will become a reality when the cure will be found. Let’s hope for cure. We can’t win without hope.

Good luck!

Marina

[sparks4me in reply to Cureforever]

Marina, The info you shared about your cousin was very comforting. I did read some of the posts about ErSO and that is very exciting. 5 lines of treatment in 2 years. Wow, how stressful.

[Cureforever in reply to sparks4me]

Good luck. I have faith for ErSO

[sparks4me]

Sandra, You cleared up the pain question. Thank you for caring and your time in responding. Lori

[blms in reply to sparks4me]

y bone mets are not as extensive as the above but I will say, at this point, none of them are particularly painful at this point. I am grateful for that. I had had a great deal of liver pain and discomfort but no longer since I have been on taxol. Last couple of days, knee pain--what the heck!