Bone Mets Thread
Comments
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Rachael1:
When I was first diagnosed and joined BCO I had several private conversations with Rachael1 I was able to connect a private message she had sent me at one time with a FB post that Christine was suspicious about that Deanna was able to find on FB as well- Christine thought she was or could be the same person that had suddenly passed away on a FB post. In deed it was her.
I took it hard today after connecting the dots. Her passing was sudden due to complications and it looks like the medical system failed her. We connected because she was originally from the MA area and had seen an MO at Dana that she did not liked and wanted to know who I was seeing. She had moved out west but still had family and friends in MA.
This sounds selfish of me, but sometimes I think I would be better off not being on the boards. I did take a long walk today (lol a mile) and thought of her most of the time. I saw a chipmunk avoid being killed by a car as my tears were rolling down my face- I hope that was her letting me know she is ok. I am so upset --
Hugs, Carol
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I shoulda, coulda but I didn't. Had Taxoetre # 6, three days ago. My nails are tortured. I was hopeful that I would avoid problems as I did not have any when I had Taxol back in 2013. Biggest issue now is basic stuff, doing dishes, laundry, getting dressed. The look & feel painful & are one more thing to deal with. Thanks Deanna, I will attempt taping them.
Dee, sheesh, what a nerve wracking day. I hope good results come soon
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Carol, my deepest condolesces to you and her family. Although I didn't interact directly with Rachael I do remember her posting . Besides this makes me sad because whenever ANY of our sister passes due to the disease and/or complications from it i am always saddened. Please God send us a cure asap before more sisters die.
Aurora
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Carol, I am so sorry about Rachel and the sadness her loss caused you. BCO has it's very good points but the losses are very difficult to handle. I wish the losses didn't hurt so much.
Dee, Yikes - what a day! When will you have the results of the scan? I'm so happy you weren't passive about rescheduling and that it was accomplished while you were there. Sometimes these hospitals forget who they're dealing with...good for you.
Deanna, I did ice my toes and fingers throughout the entire CT chemo and yet 3 years later I'm getting these SE's - perhaps you're right, that Ibrance is contributing to the current problem. I'll give the tape you suggested a try - thank you.
To all my US friends, I hope you have a safe and happy Fourth of July. Be well.
PS a few images from my road trip to Wyoming with DD1 and 4 grandchildren - these kiddies are FIERCE miniature golf competitors - I barely won!
Amy
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Carol, I read your post about Rachel1. I can't believe that she is gone and passed so quickly. I remember how scared she was and how helpless I felt since I did not have the power to comfort her. I know that it is difficult to see the reports of the losses of so many on these boards. We bond so quickly here. The losses are personal. I often wonder why them and not me? Will I be next? Why is it happening to any of us? How can this be stopped? Of course there are no answers to the questions, and I am left feeling sad and powerless. Those are emotions that I seldom allowed myself to surrender to in the past, but now they somehow overwhelm me at times. Sometimes think that I should leave these boards, and I do retreat from time-to-time, but so far I have always returned. I hope that you stay here. You are an enormous source of support and education to so many. If you do leave, I will understand. It is important that you do whatever makes you strong and comfortable. I just want you to know that you are appreciated.
That goes for all of you dear ladies. I appreciate and love you all.
Lynne
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Amy those four are adorable you are so lucky to have little ones in your life.
Dee what a nightmare let's hope the other visits go smoother. I keep thinking we are going to run into each other one of these days at the hospital lol. Don't feel bad about stepping into the line you have a very good reason.
Deana I hope you know how important you are to so many of us😊
I want to wish all my American friends a safe and happy Fourth of July . I'm celebrating Canada day in one of my all time favourite cities Vancouver . Happy Canada Day all you fellow beaver fans .
Wendy
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CORRECTION: Amy and Wendy, you both have read my post incorrectly!
Christine is fine!!! It was Rachael1 that we lost..
Carol
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Carol, I am so sorry - I corrected my post. Every loss is painful and very personal, even if we never knew the person other than for support like on BCO. One of those I connected with, Raro, passed about a year ago. We PM'd each other often and I felt especially bad for her because her children had already lost their father, to cancer I think. It was unbearable for her to know her kids would be orphans. Every passing is one too many. Please dear God when can we cure and prevent this dreadful disease?
Amy
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Deanna, May I add my name to your list of admirers! You are a wealth of knowledge, kindness,and support all rolled up in one fantastic person! Thanks for all that you do for all of us!
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Amy, there just had to be a cure coming soon! Loved all your pics. Have a safe 4th Hugs Carol
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Amy what great pictures. That's what it's all about. Spending time with those we love!
Carol I am sorry about Rachel1. Every loss we have is just too much. The bonds we've formed here are so important- this us our safe place that we share with our sisters and it just hurts!!!
Deanna let me repeat how much we all value you and all the information you share with us. Thank you!!
And to everyone else. Happy July 4 th🎉🎉🎉🎉
Babs
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Dee. What a nightmare beginning. It can only get better from today's experience!!!!
Babs
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Hi All
Carol, thank you for letting us know about Rachel and I'm sorry for you and for all of us as we face another BCO sister's passing.
Amy, I love your photos and happy to know that you have some cherished memories now from that trip. Sorry you are having to go through losing your nails. It just isn't right what SE's we have to endure.
Dee, Whew. What a tough long day for you. I say take that spot in line and get on that ferry! You deserve every little break you can.
........And may I say that all of you are truly remarkable, smart, strong women ( and man...letmywife..please check in with us) who have the wisdom and caring of nobody else I know. I am honored to call you my BCO sisters.
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I am so upset about Rachel, I cannot believe she is gone. It seems like only a few days ago that she was posting about her chin met & how could it be missed??? wow!! I know this is part of our online friendship, but boy it's hard. I haven't seen a thread for her yet, but this is the first thread I come to. I hope there is one for condolences.
Carol, I have left a couple of times but I always have come back because I find it harder not knowing how everyone is, but I understand if you do. But know that I will be sending you PM's asking about your treatment.
Amy, love those pictures, I so love seeing us enjoying life.
Wendy, I'm sure we will run into each other or meet up at some point. I'm going to be over there on the 12th & I have quite a bit of time between my labs at 9:30 & meeting with Dr Simmons at 1:15. We could meet for an early lunch?
And I'm going to steal Lindalou's idea, because I too would like to say that I feel like everyone here has my back, good or bad. My new onc highly recommends BCO as an online resource for info & support, she says it's one of the good ones. I don't think she really has any idea.
so thank you from the bottom of my heart, cheers, dee
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What appears to have happened to Rachel (or who we believe is Rachel due to similarities in stories and timelines) was extremely upsetting, but it sounds like there was more to the story than here one week, gone the next. Evidently, she sought tx in Mexico where she succumbed to pneumonia. Her mbc aside, I can't help but wonder if the pneumonia would have been caught and treated sooner if she'd been in the US. As sad and tragic as it is, I think it's important to have this information to put what happened in perspective. I've also located her obit. PM me if you'd like a link. I hesitate to post it here only b'cuz even with the similarities to what we knew about Rachel1, I'm not absolutely 100% certain this is her, if that makes sense.
I agree with Lindalou, Dee and others who have said what a special group and bond we have here on BCO, and especially within this thread. You are all so strong, intelligent, compassionate, funny, and special to me!
Love the joy-filled photos, Amy! They're so timeless!
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Deanna, we are a special group and I feel so attached to everyone here. Honestly, the upbeat and good attitudes is half the battle. There is always something I like to connect to each of us other than bone mets!! For example: I think of Lindalou in a kyack or Zar always exercising and sweet Amy on a train just enjoying life. Wendy with her horses and the list goes on and on. Deanna, I always have you close to me as I drink my Motcha Green Tea.
Happy 4th to all my dearest friends. BCO is another one of life lessons and every now and then we need to take a break to reflect. I'm not ready to take a break again but when I do I will let everyone know. I pray for everyone.
Carol
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Aww Carol, what a nice post. You hold a special place in our hearts as well. Have a safe but enjoyable 4th of July...make memories for your loved ones and of course yourself.
AmyQ
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I just want to add to this conversation. I feel like such a newbie, having my new diagnosis less than four months. I look to each of you ladies as such a source of inspiration. My posts are somewhat selfish, I believe, because I tend to only ask questions and seek guidance. I am scared. Every day I look at my DH and little girl and wonder how long I will be here for them. You ladies never fail to give me hope that the answer is quite a while. Many of you have offered so much information, shared similar experiences, and eased my anxiety about drugs, treatments, SE's etc... I go to bed each night and sleep a little easier knowing all of you aren't far away if I have questions or need some support. I am forever grateful to these boards and all of you amazing ladies. I hope to be able to provide support and encouragement to other women someday and pay forward the little peace of mind many of you give to newbies like me, by your kindness and endless sources of information.
Debie
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Debie, your'e post says it all, ladies here are a secure, supportive group. You & I joined the stage 4 status, about the same time. We both have Lobular. Mine started in the liver & quickly went to bones & spine.
I keep hearing it takes 6 months, or so, to adjust to this new reality. We are at 4 months. I have had 6 infusions of Taxotere, so back in chemo hell.
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Deb and Holeinone- I wish you could see my posts when I first joined. I found it to always be about me. It's normal that's why we're here to help you understand that this is a marathon not a sprint and we will finish this marathon as more clinical trials will have us crossing that finish line.
I feel absolutely wonderful today and hope everyone else as well does too.
Hugs Carol
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Carol - I am glad you are feeling well.
I hiked this morning early by myself. When I got back to find the family's plan was to go for a bike ride. When I finally got back for good, I plopped in front of BCO exhausted and laughed when I read your post. Certainly feel like I am exercising all the time today. But I haven't been feeling great. Headache, nausea and a lot of hot flashes. I think these are symptoms of the hormone suppression. Zero estrogen. Yech. Exercise helps.
Deanna - I appreciate your note on what happened to Rachel. I have difficult treatment decisions to make about risk and opportunity. It's important to me to have the facts. I do consider options in foreign countries where I can make an end run on the flawed FDA approval process; however the risks of working outside the FDA system are significant.
All - The losses and hardships we go through ... Dee what a fight to get treatment! But keep going everyone: there are some statistics it's been put on our shoulders to change...
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Holeinone- may we have many years together on this board! I just looked to see and several of us are ILC. Makes me wonder what is going wrong with our treatment plans in the beginning that so many of us end up at stage 4. I'm sorry to hear you are on Taxotere. I hated it 2 years ago! I'd like to know why you haven't tried Ibrance yet? So much better than Taxotere...
Anyway, I hope everyone has a pain-free holiday weekend. Praying for all of us, as always.
Debie
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Debie I am ILC and I was in remission for 18 years before it decided to take my bones hostage. Never came back in breast. I plan on keeping this at bay for at least 18 more years !!
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Z, I just wanted to add... I've known two women in the past who lived with mbc for 20-25 years, probably b'cuz they did a combination of holistic and conventional medicine, including having the resources to seek out expensive clinics in far flung places. So I didn't mean to imply that Rachel made a poor choice going out of the country for tx, especially since it sounds like she was well traveled and familiar with Mexico. I just think her story highlights the importance of being sure any clinic where you or I or any of us might seek care is set up to handle medical emergencies, including an MD on the grounds 24/7 and access to first class medical facilities in an emergency.
Edited to fix typos, etc.
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Agreed. It would be nice if we had a clear treatment protocol available from US doctors without risks. But we don't. So we do complex risk based decision making. Again, I appreciate your post because understanding the risks is key. The holistic and alternative treatments are an opportunity but also high risk the more deep you go.
I don't know Mexico, but I would head to South America for treatment in a heartbeat if I did not have insurance to cover treatment here. They do breast cancer well and they can more freely integrate US, European and complementary protocols. However, I would not have access to Ibrance, which I think is a good idea for me now.
>Z<
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I'm still very new here...bone mets discovered May 2016 so I'm still in shock and very afraid... My ONC here is trying Xeloda first then will evaluate after a few cycles...would you all agree that getting a second opinion is best?...we fortunately live very close to Mayo Rochester in Minnesota
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Sti- I would get second opinion, Ibrance should be first line treatment. it's always best to get 2nd opinion
Carol
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Guess I need to update my profile...my bone marrow biopsy came back triple negative after originally ER PR positive and have been on Arimidex for almost 5 years ! So I'm guessing that's why I'm not on Ibrance.
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Stilts, you may want to talk your onc about immunotherapy which is more promising for triple negative than for hormone receptor positive cancers. Also since Mayo is close by, you should definitely have a second opinion there. Triple negative treatment is an emerging fire and it's no longer a chemo or nothing option
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My bone biopsy came back TN second opinion pathologist said unless I had a new primary BC in breast that I had to be Er/pr pos still. Bone biopsy hard to get accurate receptors because of the process they use to decalisfy the bone. Go for second opinion. My first local MO was ready for me to do Xeloda. I have been on Ibrance and let for 9 months. Get second opinion regardless Also go in Ibrance thread and listen to pod cast that was just posted yesterday.
Carol
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