Bone Mets Thread
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I'm drinking a toast to all the good news lately.It's my off cycle week, and I'm enjoying a glass of wine whether you like it or not, damn, stinking cancer!
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Wanted to share this. A double rainbow over Monona Terrace, a Frank Lloyd Wright designed building, last Saturday. We have lots of FLW architecture here. The lake is one of my favorite places to kayak.
Have a good weekend everyone with little to no pain and feeling stronger.
Cheers to you Lita!
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Lindalou it's hard to believe people really live in such places. Stunning.
Lita as always, you lift our spirits. Damn cancer it is, but you make good soup out of it. LOVE IT!
Lilmae very interesting. I am always wondering. Dani is convinced they have her tagged wrong, she really should be out there shopping for shoes! And last but not least, the most recent hiccup when a few months ago, radiologist in a very well respected organization, Weill Cornell in NYC, misread D's scan to say she needs urgent surgery, when really it was a lesion that needed to be radiated. Was causing her numbness and much pain. How careful can one be? By coincidence I had another RO in a different place look at it, and saved us much aggravation in wondering about which way to go. Long story. But....There is a saying in the radiologist community, give 3 radiologists a picture and you will have 4 opinions.
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Hello, all. This is my first time in this thread - recently received a dx of bone mets, mid-spine. I was diagnosed with BC in April: ER+,PR+, HER2-. Oncologist recommended 4 rounds of AC, 3 weeks apart, to be followed by six weeks of radiation. Of course, a quick scan first, just to make sure we weren't missing anything... two CTs, a bone scan, a PET-CT, and a biopsy later, here I am. One "tiny" area, a lesion on my T-11 vertebrae. Which apparently has turned everything upside down.
My oncologist informed me today that I am no longer considered "curable", but am merely "treatable". Is it bad that I wanted to smack him? So his plan was to treat with a hormone drug (Femara, I believe) and something with a "Z" for the bone weakness. (I have no symptoms, no pain at all, and was truly shocked when he told me my back was involved.) Then he said if I insist on chemo, which he thinks is unnecessary, since I can't be cured anyway, he would only do Taxol and Cytoxan - for six months. Then maybe radiation, if it's indicated when we do another PET scan at the time.
I feel like I'm begging this guy to treat me. My husband says we should go for a second opinion elsewhere, but I really don't want to start over. I'm going to read more posts in this thread, though I doubt I'll get to all 610 pages, LOL, but I was wondering if anyone else's doctor scrapped plans for chemo after mets were discovered? And how did that affect recovery? How do they decide whether or not a patient is in remission? When is "good enough" really good enough?!
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Ciaci, I agree with your husband. Whether you "need" chemo or not, this oncologist doesn't seem to be on your team. We may not be curable but we're all worth time, effort and respect.
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Ciaci~ same thing happened to me, almost the same senario, except I did have surgery because it was on one spot on my liver. Before I saw a surgeon, I was told no surgery either. After five doctors input I did have surgery, but most that have bone mets don't have the heavy chemo or even the surgery. I just wanted my cancer out of my body. Take the breast, take the nodes, take the liver spot. But even after that heavy chemo 4 cytoxan. Which i am not going to lie is awful. You will loose your hair with that chemo regime, then followed by 9 Abraxane treatments, it still ended up in my pelvis and a few places in my back. There is nothing wrong with the second opinion. I do believe that the course he has you on for mets sounds about right. I am so sorry for you and your shock with this happening to you. I understand. It happened to me. No pain either,at least nothing worth mentioning. It can be treated and there are many ladies here who have been fighting for years. God bless them. Maygod bless you ! Gentle hugs ~M~
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Ciaci - i totally agree with Illimae!! Took the words right of my mouth you need to digest and recharge and get a second opinion. I was dx on June 15 with sternum mets, 2 ribs and a mass in chest wall. I started ibrance and letrozole yesterday.
The ladies on this site are amazing.
Hang in there we have lots of hope.
Cathy
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Claci,
Your story sounds almost exactly like mine, I had the surgery before the scans found the mets. My chemo was cancelled the day before it was due to start, as I was told I was "incurable" and that "chemo won't save you". I was basically given Tamoxifen, and told to "come back when you start feeling symptoms".
Not surprisingly, I went into shock, and ended up with PTSD. The rest of my story is below. I am now 2 and a half years down the track, and only now feel like I'm heading down the Slippery Slope towards the inevitable.
The New Zealand medical system means that all oncologists work in the State-run system, and my second opinion came from my MO's boss. He agreed with the treatment plan, but explained in a far more civilised manner. Sadly, I went through 3 hormonals in quick succession, and then went on to chemo for liver mets, and now Taxol for "diffuse metastatic disease".
It took me 6 months to realise that Stage 4 isn't an immediate death sentence, and that many people live for a long time with "chronic" cancer. There is definitely a major shift in emphasis between the initial "hit it strong, hit it hard, make it gone" and the later focus on quality of life, comfort and minimising side effects.
I have been "playing the game" for long enough, and have done enough of my own research (much of it on this site) that I now feel confident in asking for what I feel I need, rather than just going along with my MO's treatment plan. Luckily we seem to agree most of the time. Mind you, every time he suggests anything, he runs it by his boss before he tells me - he knows I don't really trust him.
I wish you all the best as you settle into this new reality, and hope to see you on the boards here for a long time to come.
Sue.
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Thank you for the support, all. I feel like my world just stopped when the Dr said "You're not curable." I spent hours trying to control my crying - I had to get through all the "how did it go?" phone calls. Then I got mad. How dare he say it like that! There are much better ways to explain that treating Stage IV is no longer considered "curative" care. (<-- See? That already sounds better
)But I've been doing my homework. The radiation oncologist who consulted on my back biopsy told me there's a new strain of thinking, where they aggressively treat otherwise healthy women, with Stage IV and just one or two mets. Since I only have the one, very small, spot, he thought I was a good candidate. I have a call into his office, asking for a name of someone to see at the Rutgers Cancer Institute (NJ). Apparently what I'm asking about is "oligometastatic breast cancer"... now I'm off to search the boards for any mention of that.
I appreciate all the good thoughts, and send them all back around to all of you.
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https://community.breastcancer.org/forum/8/topics/...
Caici, here's a link to an oligometastic thread, I'm there too
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Hello folks,
I Hope everyone is preparing for a great 4th of July holiday! I had my Bone and CAT Scan on the 27th. I was waiting anxiously for the results, and was pleasantly surprised to get a call from my ONC on the 29th. I am happy to report I am stable with the exception of a flare up in my right hip. The plan is to do a few rounds of radiation to zap those little buggers. My family and I are so relieved with these results. I also took the advice of many of you to consult with Pallitive Care. I met with a wonderful doctor who took her time to understand my current situation and my top concerns. High on my list was the complete lack of energy and constant constipation... She gave me great advice to help with the constipation and prescribed Ritalin 5MG once or twice a day as needed. Wow I have so much more energy now to hang with the grand-kids, cook dinner etc... If any of you are dealing with fatigue I highly recommend you speak to your ONC or get a referral to Pallitive care.
I hope everyone is doing well.
Ronnie
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Oh...if we all could just sit in the afternoon sun and heal our bone mets, that would be the day!
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Thanks for sharing the good news Ronnie and the sweet bully baby Lita. Goodnight all
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Great news Ronnie. We are awaiting the results of my wife's recent PET scan. Her ER/PR+Her2- turned triple negative with numerous small mets to her spine. Tamoxifen was also supposed to work wonders. My wife failed every estrogen blocker with a year each. A/C worked for 6 months. She's been on Xeloda last, oh, 5 cycles. Started out 14/7 8 pills per day then 7/7 6 pills. I have heard he Xeloda can work wonders.
MikeW, The Heights, Vancouver, WA
P.S. Wasn't this last heatwave miserable.
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DON'T give up hope.....Xeloda worked wonders for me. I had multiple mets in liver, pancreas, kidneys, bladder, colon, abdominal wall, several bone areas and adjacent muscles near spine, and I'm still here.
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Lita aww if only...
Ronnie so happy for you!
Ciaci, what a jerk this guy is. These people roam the streets as if nothing bad or serious ever happened to them or the ones they love. Maybe they have no idea what life is about, or love. These are horrible people. My sister had a scare, she needed BRAIN MRI from a top Neuro, for 3 days she could not get answers, because there was a Holiday and the idiot could not be found, luckily she got the results from another source. But that's how they are, how do you send s/t for a BRAIN MRI with an urgent need to know what's next, and just let them wait. The fact that he should just say we have nothing for you, and then kind of just give you a handout, is repugnant. There is much treatments and things that you could have. First you need to know what type of MBC you have, are you triple positive, or negative or what...so you gotta get an understanding of that. And keep all your scans, CD's, and blood work. And for God's sake, RUN to another doc. This guy is not there to help you. At least listen to someone else.
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Ciaci - I strongly believe it is a mistake to want to like your oncologist. There are nice ones that make bad recommendations and horrible ones that make good treatment decisions. When I want emotional support, I come here. Ignore that whole line of thinking regarding how you feel about what he says of your prognosis. Nobody knows how this is going to work out for any of us. It is simply dumb to comment on prognosis with MBC. But you can have smart doctors who are still dumb in this respect.
But without getting into the weeds, you need a second opinion because your situation, with limited mets, is not simple. The question of whether to treat aggressively or not is a hard one and specific to the individual. You need advice from an NCI cancer center... the kind of place that has whole committee of people of different expertise reviewing your case.
My real problem with this guy is with his treatment advice. Your oncologists recommendation of traditional chemo in your situation (healthy and presenting with limited mets) is not the standard at this time ... hormonal treatments combined with targeted therapy are recommended for many reasons. I am not one to follow the rules, but that is one guideline I have followed myself because all the data clearly support it and it's relatively easy. He doesn't seem to have put the NCI standard of care on the table for you to consider ... which is a little scary.
Find someone else. You have time. It feels like a crisis but it is not actually.
Hugs.
>Z<
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Hope everyone is enjoying the July 4th weekend. Upstate New York is full of rain.
Lindaloe, I love the photo. I've never seen a double rainbow. Very beautiful!
Lita, I love your bull dog. They are so funny and cute. Enjoy your wine. You deserve some relaxation!! You are truly an inspiration for all of us!!
Z, I love all of you input, you are a wealth of knowledge on this disease. Thank you for always taking the time to give me some food for thought!
Ciaci, I think you need a second opinion. My husband is a radiologist and found my bone mets fist on X-ray then he did a bone scan. I have them all over. Spine, pelvis, skull, shoulders, etc. He contacted our local MO and the first thing he said was this is treatable, but not curable. My husband told me bone mets won't kill you. But my local MO insisted on a second opinion, so he recommended Dana Farber in Boston. They recommend MRI of the spine to make sure it didn't enter the canals of the spine and a CT with and without contrast. Dana Farber recommended Ibrance as targeted treatment with Faslodex and Xgeva. This is the new line of thought with bone mets. 8 months later it had progressed to my liver so Dana Farber changed my treatment to Xeloda which has dropped my liver enzymes and TMs tremendously.
I have to agree with the rest of the ladies, you need a new MO and a second opinion. Maybe Sloan or go to Boston to Dana Farber. They will fix you up. Don't be scared we've all been through the ringer. Stay close to all of us ladies on this site. You will be ok. Scary stuff, but we are all still here thanks to new therapy.
Hugs,
Anita
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Ronnie. Great news!!! Celebrate!
Linda. Thank you for sharing the double rainbow. Sopretty!
Lita cute picture! I just love your way of looking at things
Ciaci. I too think a second opinion is in order. You're close enough to Mskcc. I started out in LI where I used to live but am now being treated at MSKCc where there are more options and more positivity. Huge difference!!!!
Happy July 4 to all my BC sisters!!!!!
Babs
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Mike,
I hope your wife does well on Xeloda I am praying for you guys!
Yes the last heat wave was bad, to top it off our air conditioner went out on that day!
Hope everyone is doing well.
Ronnie
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Thanks, everyone. My primary doc has a call in to Sloan Kettering in Monmouth NJ; she said they'll call me tomorrow to set up an appointment. Yay, progress!
I understand that treatment for me may not include chemo, or radiation, but I need to feel like my onc hasn't just written me off.
Happy 4th, Everyone!!
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ciaci....back in march of 2015 i was DX with BC in both breasts + mets in lymph nodes, lungs, bones(spine+ribs),adrenal gland, and 5 brain tumors 3 of which were larger than 2cm(every scan I had was just more bad news, did I mention that I'm triple negative too).....my docs threw everything (+ the kitchen sink) at it back in 2015 and have been managing things as they pop up.....they never lied to me about being able to cure this but they always made me feel like they would do every thing possible to hold this monster back....it just now woke back up (all of it not just lil spots) and my doc fought with my insurance and pleaded with the pharmaceutical co and they got me funded for a parp inhibitor ($12,000.00 a month) and they also put me on the iv chemo havalen.....so 28 months after that first horrible DX I still feel like they wont give up on me....I do notice small things like he rarely does a physical exam (nurse yelling down hall she's metastatic, she doesnt need to undress) and sometimes i feel like a science experiment but hey whatever keeps me vertical right.....dont stop looking till you feel like "this is how they would treat their sis or mom"....that is how I phrase my questions "would you recommend this___to your sis?",I always get a thoughtful look and a thoughtful answer .....wishing you and all my sisters all the best ...big ((hugs))
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Hats off to you Nan812, you are a fighter.
My wife's ER/PR+ turned triple negative. Was stage 4 right out of the box in Dec 2012. Has numerous spinal mets, on Xeloda, waiting for results from latest PET scan.
MikeW.
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hi mike....i'm a lite weight compared to what your wife has been doing...i hope she gets a good long run off everything after this
i also forgot to add(chemo brain, lol) , i was very blessed to wind up with the team i did, one doc just recommended another and i ended up with all the top docs in their field, honestly i dont know how that happened (divine intervention or no body else would touch me lol)...i knew nothing about metastatic breast cancer and i fell into all the right hands, now i try to educate friends and family about this disease and most dont have a clue about hormone recpt. or trip. neg.or scary mets , just like me before this happened....how can there be so much awareness when they leave out so much of what bc women and men go thru?..dont ever give up looking for the right doctors for you and exactly what is going on with you,there is a (near,lol) perfect fit out there for everyone...i'm sorry i have to say near but i have to be honest with myself that they cant work miracles (sometimes they come from somewhere else).... big ((hugs))
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Sometimes I feel so ignorant reading all of your posts. You do encourage me to ask more questions and do more research. Onward!
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Happy July 4th to all the great ladies and men out there. Hope you all have a happy day and feel as good as can be. Hope this makes you smile today. This little Puffin seems to be happy even in 40 mph winds. It made me smile when I took this two weeks ago. They are so adorable. They put a smile on my face despite all my worries. Hope it does the same for all of you. Hugs to all, Anita
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Thanks Anita !!! Certainly did make me smile!!!
Bab
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thanks Anita, love the puffins!!
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Puffing Puffin, still I like the bird with the hat.
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Ciaci, maybe because I'm triple positive, but my MO wanted to be aggressive with tx, so I am one who had chemo, radiation and surgery. I was originally dx as Stage IIIA, until the PET revealed two small bone spots on T11 and left ilium. I was blown away because I had no pain and shocked to be referred to as Stage IV! But, MO said while "technically" I was Stage IV, and therefore, no longer "curable," she preferred to think of me as oligometastatic with limited bone mets. She thought we should proceed with the tx plan for 3A, and I agreed. She recommended chemo first then radiation to the bones. I did lose my hair, but tolerated the chemo and radiation pretty well, and now I'm on Letrozole and Zometa. It's been exactly two years since chemo, and so far so good, I'm stable as of this past May. IMO, bc is never really cured at this point in time, even with an early stage diagnosis since so many later end up with a metastatic recurrence. A second opinion is definitely in order if you don't feel your MO has your back and you need/want more. Advocate for yourself and question everything.
Anita, LOVE the puffin photo! LindaE, congrats on your good news. Happy 4th to all those celebrating, and hugs to everyone.
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