Bone Mets Thread
Comments
-
I have a probably unacceptable question but reading someone here that posted she has been with Stage 4 for 7 years- OMG. I would love to hear more people pop up and say that. The strongest statement I got was from my Rad Once and he told me that maybe I should not spend all of my money right away but if I lived 5 years that would be pushing it..almost a quote.
Reading these posts and I am thinking I need a dramatic about face in my approach. To be able to think 4-5 more years (been 3 now in Stage 4) I think that would help me. I am not sure what I am trying to say here but that I need some hope right now. Q
0 -
Lindalou, Thank you for letting us know. I'm so sorry Linda is gone. She was a good friend to many here and will be sorely missed. She was so kind and encouraging when I first joined.
0 -
I did not know Linda. My condolences to her family and friends. and yeah, I hate cancer...
0 -
LindaE54 many times asked about me when I didn't post. I hate this disease. May her friends and family find comfort and peace
Aurora
0 -
My condolences to Linda's family and friends. it is always so devestating to lose one of our sisters to this dreaded disease.
I feel a need to respond to Quaatsi's question and her post. First of all, I can't believe her Rad Onc would make a comment like that. I am starting my 6th year of treatment for MBC for bone mets and now for liver mets. Never, ever, has my MO made any comment similiar to what was said to Quaatsi. My MO reminds me that there are more treatments in her arsenal. Maybe my attitude is what it is because of the way she has treated me and my cancer. I feel hopeful that I will be here for a long time. I wanted to see my son get married, and I did. When I was first diagnosed with MBC, I had just purchased a Coach purse-granted it was with lots of coupons from Macy's, but it was more than I usually spend. i looked at that purse and thought that I should return it because I figured I wouldn't get to use it and why spend that moiney on something frivolous now? Fortunately, I told one of my good friends who at that time had been treated for MBC for 8 years ( She is still here, enjoying her life!!) She said it was wrong to start living my life as if it had an expiration date. I kept that purse and am still using it, and it has become a symbol for the way I want to live my life. Do I get discouraged and depressed at times? Of course. Do I have scanxiety? Yes. Do I want to live my life as fully as possibe? Definitely. My husband and I leave for a 2 week cruise to the Caribbean tomorrow. I will do as much as I can. I might have some trouble walking long distances (neuropathy,) and I am dealing with taste and dry mouth issues, but I am determined to have FUN!! Quaatsi, I hope this helps!!
0 -
Very sad.
0 -
Quaatsi - It's a flat out dumb statement your RO made. Nobody knows how long we will live or what our path will be. Many people here are 5-10 years out. You do need a 180 turn in thinking because assuming you will die will most likely kill you. This is first and foremost a mental game.
>Z<
0 -
My condolences go out to LindaE54’ family and friends. So sad to hear this news. May she Rest in peace
0 -
I am so sad about Linda. She was part of the "core" group here when I got involved four years ago, and it's a shock to hear the news. My heartfelt condolences to her family, especially her sister, and to her close friends here, especially Lindalou.
Quaatsi, I wholeheartedly agree with Z and others who have told you your rad onc's comment is both ridiculous and way out of line for any doctor. One of the FB group's I'm in has several 15 & 20 year survivors, and our OS is improving with each new drug that comes along, which isn't yet reflected in the stats. I absolutely hate stupid comments like that because they are so hard to get out of your head and psyche. Your survival depends on many things, including how you respond to meds, and no one can predict that upfront. I think your horse is smarter than that doctor.
And Patty has posted a bit on the "Patty" thread, including today. She was still in the hospital, doing better per labs, waiting on a liver biopsy, and wrestling with the recommendation to do Taxol. Here's a link to her thread if you need it. https://community.breastcancer.org/forum/8/topics/...
0 -
Q - That RO needs a swift kick in the butt! Some of these Dr infuriate me! Z is correct, this is as much a mental attitude, as a physical challenge. My original mo told me 8-10 years. 5 1/2 years ago, before all of the recent break throughs. My current MO, says that we have so many wonderful, new treatments here and more in the pipeline, that the sky is the limit. I believe him! In 4 mos, I will be 6 years in and I am still going strong!
Many of my riding friends would joke about my mare being buried with me. I have thought about that. We are so close that I finally decided that she is too young to be buried (15) so I have to stay here as long as I can for her! Well, she is extremely healthy and who knows how long she will last, so I have my work cut out for me. My Ds and dil, had only been married for a year and a half when I was diagnosed. I now have, not one but two grandsons! I didn't think I would get to be here for that. The oldest will be 5 years old on the 2nd of May and he loves horses! He thinks Mattie is his horse! Come May, I have already signed him up for riding lessons, and he is currently learning how to groom and care for a horse. That makes me beyond happy! Horses are so great for kids! I also know that this will be his solace when I go! He will have a horse to talk to and cry with and to just be with. For me, a whiff of the horse scent, brings peace to my chaotic thoughts and relaxes me. I once took a fb survey asking what were your four favorite scents, mine are horses, leather, hay and Chanel #5. What are yours?
I expect we will be discussing our horses five years from now, and feeling so happy that we are still here!
Hugs,
Claudia
0 -
A sad and hard day when we lose an MBC sister. May she rest in peace.
0 -
Sending condolences to LindaE54 ‘s family. It is a sad day for all of us in Bone mets. Blessings to all who mourn her passing.
Mair
0 -
LindaE54 was one the core posters here when I first joined. She had that cute doggie avatar. My heart goes out to her family and to those of you here who were friends with her. Punch in the gut as always.
0 -
Hi, I just been diagnosed with bone mets. My doctor wanted to start with Ibrance and Femara treatment, my extended insurance doean't cover the Ibrance, what are the alternatives? any input will be appreciated
0 -
Linda was such a kind supportive person. You can see that evidence in her posts that I just went back and read. She so rarely spoke of her own issues but instead the majority of her posts express concern and support for others. She did post just recently that her decline started in may but did not post much about that decline until just recently. What a wonderful woman. Her concern for others appeared to overshadow her own challenges. Prayers for her family and friends.....Mary Anne
0 -
Vilma, there are places to get assistance. Pfizer has support. When I was on Ibrance the Patient Access Network filled all my gaps. They are wonderful to work with. My MO’s office helped with the contact.
0 -
Hi Kaption, thank you for your reply, I'm Canadian and Ibrance is one of the few medication that is not covered by Pharmacare (our drug program) or my extended. I spoke with Pfizer and we will try to appeal the coverage but I'm trying to check alternative if we are not successful with the appeal
0 -
Vilma - there are good arguments for doing letrozol alone first and then holding the CDK 4/6 inhibitors for later, perhaps in combination with with faslodex if you progress on letrozol. There is no clear evidence for one sequence over another, but letrozol alone was the go to first line treatment prior to ibrance's release and it can hold back cancer on its own for a long time. If you can make letrozol alone work for a while, it can be a great strategy. In hindsight, that is what I would have done myself. In the panic of the initial diagnosis it feels like you want to "do everything" but really what we are trying to do is to parse out the available treatments so the sequence lasts as long as possible.
In any case, a reasonable strategy is to go on to letrozol (with confidence) and then take your time to figure out the programs that will get you access to ibrance with time. You want in in the arsenal but arguably not the first line treatment.
Welcome, keep us posted.
>Z<
0 -
Hi Zarovka, thanks, that gives me some peace of mind. I'm still new to this stage and trying to learn how to navigate all this
0 -
My heart is heavy along with all of yours. Linda was so welcoming and encouraging to me when I first joined here nearly two years ago. She is a blessing and I know leaves both wonderful memories and a big whole with all who loved her. *edited, thanks Deanna xoxox
0 -
NettaGER I want to let you know that estrogen is also produced by body fat, irregardless of how little or much of it you might have you might not be able to avoid the estrogen blockers...
0 -
For those who are Triple Positive here is an interesting trial at the University of Colorado. Tucantanib, Palbociclib and Letrozole.
http://www.coloradocancerblogs.org/cu-cancer-clini...
We think hormone receptor and HER-2 signals are coming together to help cancer cells resist treatment," says Shagisultanova. "The CDK4/6 inhibitor palbociclib can block these converging signals in the nucleus. We believe that if we can inhibit the signaling deeper in the tumor cell using this triple blockade, patients will have longer lives and better quality of life."
0 -
Marylark, I'm not +++ so just skimmed the article and wasn't sure if it was for Stage IV or all stages. Do you happen to know? Also, any chance you are being or were treated at the University of Colorado/Denver? Someone in a FB group I'm in was asking for a BS referral there, and I thought maybe you would know. Thanks.
Oops! Nevermind the first question! I just looked again and see it does say metastatic patients.
0 -
Silviah, I had a unilateral mastectomy and, like you, decided not to go with reconstruction after getting the stage IV diagnosis. I was having a lot of back and shoulder pain, and realized part of it was because I sleep on my belly and my torso was twisted because I have a large breast on one side and not on the other. What has helped me is wearing a stretchy cami bra with a soft knitted knocker on the mastectomy side while sleeping. It gives just enough support to keep me from distorting my body alignment. I also use it when getting massages, so that my body stays level. Since I started using the knitted knocker while I sleep, my neck and back pain has reduced dramatically.
0 -
dlb I know a good MO there but not a surgeon. I worked with a surgeon not affiliated with CU but in the Denver area who I really liked. She did an excellent job for me and I would highly recommend her. Let me know and I will PM her info.
0 -
I haven't posted on this thread in a long while but I've been following along regularly -or trying to. So much activity on this thread as we all keep chugging along! Anyway, I thought it might be about time for me to post an update.
I've been enjoying a good run on Kadcyla - about a year and a half so far. During that time, I've had two PET scans that showed no metabolic activity. I have bone and liver mets with some debate as to whether I had lung mets at one point two years ago. My doctors (and I) now agree that the lung was likely just healing damage from my post-mastectomy radiation. My liver has been clear since my first series of Taxol treatments immediately following diagnosis. My bones (spine) has had a few spots that also went quiet during Taxol treatment but progressed when I was on just Herceptin and Perjeta which is when I moved on to Kadcyla. Well, my most recent PET showed a flare-up of one stubborn spot in the lumbar region. So, my team has recommended SBRT in hopes that if we zap the non-responding met, I can continue my run on Kadcyla for longer. In preparation for the SBRT, I had a spinal MRI that confirmedonly the one active spot. I will have a single radiation treatment and will continue on with Kadcyla. I'm taking a one week delay in my infusion for the radiation. I'm a little nervous about the SBRT because, we'll, it's my spine! But, I feel like it's a good plan if works. Wondering about others’ experience SBRT.... many thanks.
0 -
Snowfall ... thanks for the info...I just got my knitted knocker in the mail Thursday. ...haven't tried it yet. ...had to wash it first. Now that is dry..I'm trying it out today/tonight.
Sorry to hear about Linda.
I hate mbc.
0 -
luv2fish: Thanks for your input. I know, that I will always need some estrogen blocker like letrozole, fulvestrant or similar, but I hope to get off the Trenantone (Leuproreline) by getting the oophorectomy done. I do not completely trust the 12-weeks release profile, because I know that this is rather difficult to accomplish. Additionally, I am rather overweight and do not know, if the dosage is ok for me.
Does anyone know how good Trenantone is wrt release profile and if it works equally well for obese persons?
0 -
Netta, I can share that I too carry extra weight and asked at one point (because I too wondered and had talked with a friend who is actually underweight about her experience where the Lupron was not working for her) to have my estrogen levels checked. The test seems pretty limited, but did come back to report menopausal status. My hunch is that it does work pretty well most of the time.
0 -
Jen: thanks for your input, that is a very good idea. I will talk to my doc to get this measurement done.
0
