Bone Mets Thread
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Rachel - Like everyone else here, I am appalled to hear how Dr. Silver talked to you. I hope you find someone else who has better people skills and also less of a pessimist. There are many people on these boards who have lived many years with stage iv bc. Hopefully, we will join that group, too.
Rachel and Gaia - I have bone mets in many places - humerus, ribs, sternum, vertebrae, tibia, femurs - and my onc is honest but upbeat with me. He confirmed that there is no cure, but this is treatable. Our goal is that I will live for many more years. I have no pain right now. I have only been in treatment since late June, but my alkaline phosphatase level has already gone from sky high to normal. That indicates a great reduction in activity in my bones. I will have my tumor markers rechecked next month. I am hoping they will be way down. I hope you are both feeling better about things.
Lindalou- have fun in Chicago.
Hope- I hope you feel better soon.
I wish everyone a good and pain free weekend.
Lynne
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Kendra Sue and Rachel, I think the Drs. prepare you for the worst and hope for the best because everyone's body and different. I go to MD Anderson and was given a 5 year prognosis. I have bone mets only to the pelvis and L5. I think they just can't predict the course of cancer, how it grows, where, how it reacts ect. Once you start treatment and read on the boards you will feel much more hopeful. I read the book Radical Remission and although I don't know what is ahead of me. It gave me hope when I needed it. Don't be discouraged. Since I started TCH and Zometa, I feel really good overall. I wouldn't know I had cancer if they didn't tell me and I've only had 3 treatments.
Gaia, my original tumor tested triple positive, however the bone biopsy came back HER2 neutral. My MO told me they were going to treat it as hormone receptive until the first set of scans which I will have Sept. 8th. Fingers crossed and prayers for all of us. Have a great day everyone. XO
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thank you for sharing your story Lynne
We are driving to doc now and reading stuff here is helping me breathe
I also appreciate the bit about the alkaline phosphatase. Here is another thing that's mystifying. Mine is totally normal:52
I know there are many factors at play but there is so much incongruity
It's a huge lesson in remaining open and flexible
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Hi ladies,
Still struggling with pain and dark thoughts today but having the support here is really helpful. No one in real life "gets it" though people try their best to be supportive. I do see my onc today but I really think it's up to me to lift myself out of this funk.
That Dr. Silver sounds awful. I too feel discouraged reading what he told you ladies. That would get to me too. I hope someone speaks to him about his attitude. I don't think he gets how powerful his words can be on an impressionable patient newly diagnosed with mets.
I really hope they are developing more and more treatments every day since I may run through them quickly. I am praying too this pain isn't a sign of progression but in the past with pain there was progression, so it's hard not to go there.
However, my alkaline phosphatase has never been abnormal as far as I recall. My calcium is the high side of normal in the beginning. I have no idea what it is now.
Hope, I am glad pain is better controlled but now worry about that vomiting. Hoping it's just a side effect of your new treatment??
Tomorrow is D Day. We leave for our trip to Turks and Caicos. I am NERVOUS. Traveling with this pain is scary but I see SO MANY of you trying to enjoy and seize the day, I will too! I will actually try to post here if I can because talking online to you ladies helps me. I should have internet, I'm not going to any off the beaten path, it's a major resort, Beaches. I am going for 6 nights. Be back Friday afternoon.
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My MO told me on Wed that the alkaline phosphate can be high if ur r on a bone builder like Zometa. There can also be pain when ur bone is regerating. She also said that if u r on steroids it causes the white blood cell count to go up. She also said there can be progression with no pain. I've just decided its a such a crapshoot...pain with healing....pain with progression....no pain with progression...no pain with healing...who knows? She also doesn't take tumor markers. She said scans are the best way to check what cancer is doing in my body. Meanwhile I've decided not to waste a day and if I need an anti-depressant or anti-anxiety drug I'm taking it because I'm not wasting a day. Hugs to those hurting emotionally and physically. Cancer is hideous.
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Thanks for that reply txmom. It really is a crapshoot. Maybe my bones are regenerating...
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Rachel and gaia... I just want to share some reassuring things my UCLA onc has said to me in the past year and a half since my re-dx. First, she has many 5, 10, and at least one 15 year mbc patient. She has one patient who has been doing well on Ibrance (the newest drug approved for us) for 6 years. When I asked about testing to see which meds work if Anastrazole, the first one I was put on, stopped working, her response was, "We have A to Z treatments, and you're just at A."
Of course, we and our diseases are each very individual, but keep in mind that today's stats are based on dx & tx started 5, 10 or more years ago -- pre some of the drugs and txs commonly used today, and back when no one looked at mbc as a chronic condition, a term frequently used today, especially for disease limited to our bones.
It's very normal to be in a very dark place when first dx'd and/or when we are in pain. But hopefully you will both get on meds that will work for a very long time, and that along with whatever other healthy, positive lifestyle things you do will keep you and all of us going until we have more research breakthroughs.
Cristina ~ Sending you strength to enjoy your trip tomorrow! Deanna
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Christina-Enjoy your beach vacation! I have only seem photos but it looks lovely there. And I am a firm believer in the healing properties of sun, sand and ocean water! I also have a hard time with my mind going to the dark side. I have children too and the thought of leaving them behind is unbearable to me, I don't talk about it and try not to think about it. I celebrate everything and try to feel gratitude for every event, and being sentimental about things I used to find myself sad about major life events (like my daughter leaving for college next week) but now I just reach out for the joy in the moment and focus on that. Today was the first day of school for my 7, 12 and 16 yo children. So I am treating this as a celebratory day
because 2 1/2 years ago I was so sick and I am still here!! I try to celebrate a lot . lol! Getting your pain under control helps tremendously. Have a great trip!3-16 I had headaches for a couple of weeks when I switched to Aromasin. Then the headaches faded away so I hope you will have a similar experience. Also the smoke in the air from all the wildfires makes my headaches a lot worse so I am back to using Flonase and my allergy meds. I hope you find some relief soon,
Gaia-Welcome, I think you will find lots of support here. We are all in this together!
Dani's mom-I had my T-8 and T-9 radiated just a few weeks ago, it has already helped with the pain and I feel good at zapping any cancer cells that I can. I have my tumor markers done every month and I find them to be consistent with what is happening in my body (confirms PET scans as well)
Romasma-I am glad your pain is better. A while back you mentioned your daughter and what she is going through. It helped to know I am not alone, my oldest daughter is home with a chronic health condition. She should be getting ready for her 3rd year of college but she is unable to go back due to health reasons and it is heartbreaking. My other daughter (18 yo) is leaving for college next week. Although my oldest is handling it well, I am sure it is a huge disappointment to be left at home while her sister and friends continue on with their lives. There are just so many things in our lives that I never thought would happen, it is a real struggles to find the strength to make decisions and forge on ahead.
Hello to everyone, I hope you all have a great Friday. It was the first day of school for three of my kiddos today! Normally I hate back to school, but this year I am just so darn grateful to be here to see it that I am thoroughly enjoying it all!
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Thank you Deanna for the support!!! I love what your oncologist has to say and it makes me feel a million times better!!
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Hello to everyone,
I spent the day away at my friend's house yesterday with my younger brother, sister and niece. We lounged by the pool, had drinks, talked and laughed, had a bbq and took some amazing pictures of the night sky overlooking the vineyard. It was an amazing day!
There's a lot for me to catch up on. Rachel, sorry to hear that you have a hairline fracture in your pelvis, I hope it isn't causing you too much pain. My Radiation oncologist said I could get fractures from the rads, kind of a scary side effect.
gaia0132, I have tightness in my chest too and I can never really tell if it's from my double mastectomy or from the mets in my sternum but when this all started for me last May my chest was so tight I almost couldn't breathe and my mastectomy had been done 2 years prior. Maybe a little bit of both in my case.
Romansma, I'm sorry to hear about the nausea and vomiting. Did you end up calling your MO? Glad your doing better with pain and have your pain meds sorted out. I hope you're feeling better today.
Lindalou, enjoy Chicago and yes a top rated restaurant is a must indeed!
Xavo, what a sweet thing you said, thankyou! It actually made me tear.
50sgirl, I'm glad your onc is upbeat with you, that is what we all need. Who the heck wants Dr. Doom and Gloom, not me! I say as long as we are living there is always hope!
txmom, it makes me so happy to hear you're feeling so well after 3 treatments. That is really encouraging! My met on L5 is the one that bothers me the most, even though my last scan says it is healing nicely.
Cristina, how did you make out with your onc yesterday? I hope your trip to Turks and Caicos is everything you need to nourish your soul and lift you out of your funk.
Deanna, your posts are always so encouraging, thank you for sharing what your UCLA onc told you. Therein lies hope, something we all need.
Starbrightlyshines, your post resonated with me. Celebrating everything and feeling gratitude for every event. I find joy in the simplest of things now and relish every moment, like last night's breathtaking sky!
Hugs to all, Annie
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Ok sorry, you know me and my pictures. One more of me and my BFF with the most colorful sky behind us. I just was in awe of the colors, crazy I never paid much attention to these things before!
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Saying hi to all of you and Happy Sunday!
Annie - those pics are breathtaking! Really beautiful.
Rachel - I don't think I welcomed you yet, so a warm welcome to you.
Wishing us all a pain free day, or manageable pain. Sending hugs all around.
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Saturday here is cool, fresh, and bright. People are busy with the rest of their vacations. Annie, thank you for the beautiful heartwarming pictures! It's moving that you said you did not notice the colorful sunset before but now.
Wish everyone a great weekend!
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Annie, Thank you for those beautiful pictures. They make me feel so calm like all is right with the world.
Xavo, we are practically neighbors. I live in NH. The weather is beautiful here, too. School starts on Thursday here, so I hope it's not too hot then.
Lynne
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P
Good morning, all, I thank everyone so much for kind words and thoughts before my hospital visit for a CAT Scan and a Nuclear Bone Scan yesterday. I was so utterly frightened, couldn't stop the tears. May I introduce myself, and join you? I was diagnosed in January of 2004 with Stage 2 non-invasive, no lymph nodes involved. I had two lumpectomies, radiation, and five years of hormonal therapy. In December of 2014, my oncologist told me it had been ten years, all was well, I had the green light to go ahead with my life. I was so happy, and became engaged. Now, I have just been diagnosed with Stage IV breast cancer metastasized to the bones--femurs, shoulders, right arm, skull, etc. Just the bones. I got a second opinion at Dana Farber and the negative aspect of the interview paralyzed me--I had become unable to take instant action, too horrified. Until now, when I let my former, and truly wonderful, oncologist back into my life. She accomplished a plan to purchase Arimidex directly from the manufacturer, and has just accomplished a direct plan with manufacturers of Xgeva, as well. My oncologist is truly wonderful, and has been urging me on. Four days ago, I took my first Arimidex pill, in the morning after breakfast. I burst out in sobs--the first crying I had done since being diagnosed. I just let it flow, until it ebbed and came to an end. Yesterday, as frightened as I was, I accomplished the two hospital tests, and was really so awfully proud of myself. I didnt think I was going to be able to do it. I finally am doing what's necessary without fear limiting me. The kind words from some of you made such a remarkable difference for me! Thank you! I now await the results from my oncologist's office. May I become a part of this special community? I would love to stop feeling so lost and alone. It's all so new to me. I'll let you know the results when they arrive in a few days. Today is gorgeous New Englandy weather--here is a pic of the cone flowers in my garden. I hope you enjoy them!
xo,
Valerie
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Linda, Xavo and 50sgirl glad you enjoyed the pictures. It's funny how I took the beauty of nature forgranted before and now I am in awe of it, I truly appreciate what a beautiful world we live in.
Kendrasue, what a beautiful garden! Are those purple cone flowers? Of course you can join us here although I wish you didn't have to, it saddens me every time a new person joins because I know the circumstances that brought them here. We will support you in any way we can. I'm glad you're not letting fear limit you from doing what's necessary. Please let us know your scan results. Wishing you all the best.
Hugs to all, Annie
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Valerie, Welcome to the bone mets thread. We have all been where you are now, and the people here will give you lots of information and support when you need it. I certainly shed my share of tears, especially right after the dx. It seemed as if my life was consumed by fear and my time was spent going from test to test and from dr appt to dr appt. thank goodness things have slowed down for me. I am glad your onc is supportive. I feel really good, and so far my life is pretty much normal. I am also on Arimidex. I celebrated the day I took the first dose because I looked at it as the first step of slowing down this stupid cancer and prolonging my life. I love the pic of the coneflowers. They are beautiful. Mine have already begun to fade. I also live in New England (NH). I am hoping for a milder winter this year.
Lynn
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Valerie, we welcome you to our group! But we are sorry for the circumstances that have led you here! Your story is oh so familiar to me, very similar to mine. I am very fortunate to have an optimistic onc, one of the first things she said to me when I was diagnosed with mets,was that she did not consider this life threatening. She said she has many patients that are 10 plus years out. She feels that many treatment breakthroughs will be coming and she can help me live for a long time yet. Annie, I love your sky pictures, I am always looking to the sky, perhaps looking to Heaven for God and my Dad to guide me through this. They are beautiful. Hello to all I have forgotten to name, wishing a pleasant and pain free weekendto all.
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Some of you may think me crazy, but last night I adopted two baby guinea pigs. I had them as pets when I was little so have always had a fondness for these little rodents. They're 2 month old brothers and as soon as they quit being camera shy I'll post a photo. We recycled a huge fish aquarium that sprung a leak and have it in our living room. They're social critters and since I spend a lot of time in the living room, they'll keep me company.
I brought my three oldest grand children over to see and name them...so they're officially "squeaky" and "skunky" due to the coloring, not the smell. Guinea pigs live 5 to 7 years so I'm hoping I outlive them
but if I do, tears...I've always been sentimental and frankly a hot mess when it comes to losing pets. In fact I can still muster tears from a guinea pig I had when I was 12. Some neighborhood hoodlum let my brothers rabbit and my guinea pig out of their cage and I can only imagine the misfortune to befall them. But - happy now with two new little buddies.
Amy
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A quick hi to all...stuck in construction traffic about an hour out from Chicago. Crazy traffic. Inching along...... I will post pictures when I get back.
Annie your photos are so pretty and peaceful. Thank you
AmyQ, Sweet that you have guinea pigs! Aren't pets the best?
Lynnwood, Your sentence about your dad made me tear up. I lost my mom and sister to breast cancer and my brother in a horrible car accident and my dad is too gone. I hope they are with me on this journey. I 'feel' their presence often and miss them all terribly.
Valerie, welcome. The women here are the best. You are in good company.
50sgirl. I think I need a trip to New England this fall.
Xavo and LindaE a good weekend to you too.
I'm writing this from my phone and getting a bit car sick doing so so signing off!
Best to all.....
Linda
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Hi all,
I am so far behind. Rachel, Valerie, and Gaia - welcome (hope I didn't miss anyone...feel like I am but can't scroll back). The way you were treated at DF is horrific. My first MO was identical - basically had written me off before we even got started. I got a second opinion with a world class MO who agreed to take me as a patient under one condition - that I send my original MO a card every Christmas and say "still here!". DO NOT LISTEN TO THIS GUY! I don't care how smart and educated he is. You are not a statistic. Each of us is unique and our cancers are different. Stage IV bone mets are on the cusp of being classified as a manageable condition. Yes, there are those who have been through treatment after treatment and it's not an easy road. And we have lost friends here. It is truly heartbreaking. But there are also 5, 10, 15, 20 year survivors here. To be so arrogant to "predict" your lifespan is just disgusting.
Annie - Love the photos. Just stunning! And you look fantastic too.
Romansma, I'm sorry to hear about the nausea and vomiting. Glad your pain is under control - now to get the tummy issues sorted.
Lindalou, enjoy Chicago! Can't wait to hear what restaurant you go to!
50sgirl, Your MO sounds like mine - he's very upbeat and positive.
txmom, so glad you're feeling so well after 3 treatments!
Cristina, I hope your trip to Turks and Caicos is great and you don't have too much pain to enjoy it.
Deanna, you write so well! Love your posts. How are you feeling? Better I hope.
Starbrightlyshines, lovely post!
Myra - What an absolutely precious and beautiful grandbaby! Thanks for sharing the photos!
AmyQ - Love it! Guinea pigs! They are adorable. Sadly, you probably will outlive them. I still miss my past pets; hard to say goodbye. But the enrichment and joy and love they bring is worth it.
Since we're posting pics....we have a neighbour come visit yesterday. Right up to the dining room window! Romeo (the cat) was the welcoming committee.
Hugs to all,
Terre
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I love goats and sheep!!!
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Myra, congratulations on becoming a grandma to such a lovely little girl ; and thanks for sharing your picture with us. She's gorgeous!
I'm way far behind but working at catching up.
I had a brain mri today and feel a wee bit nervous. I sure hope they find nothing but a brain. Lol,
Sorry about your pain Dee. I had another day of tumor flare pain and I was pretty miserable. Once I remember to add advil or aleve to the oxy, I start improving pretty quickly.
Thinking of you Hope. Hoping they find something you respond to. My second opinion comes up this week. Oh goody.
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Sending good thoughts your way, Dune!
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Hi Valerie.
Very sleepy now, but wanting to say hello.
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'Stage IV mets are on the cusp of being classified as a manageable condition'
I love this statement.
Valerie thank you for sharing your journey and I too am sorry that the circumstances led you here- I'm very new Here and to all of this ( just dx in June 2015 at IIIA and August scan staged me at IV with bone mets)
I'm writing at this ridiculous hour not because I woke up for morning meditation and decided to visit the boards, but because I've been up almost all night with churning thoughts about starting treatments. I haven't even taken an antibiotic in over 30 years. So freaked out by potential SE, even though I know the regime we set out for is on a 'first line of defense/action'
I'll be starting tamoxifen this week and then herceptin infusions in mid september.... can anyone speak to this combo as a combo that did/does not include more aggressive chemotherapy drugs?
Thank you all for 'listening' and thanks to everyone who post positive outcomes and about living life with this!
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Well, I think I got my days a little mixed up! Now I can say Happy Sunday to all!
Valerie - a warm welcome to you! This is a great place, it was truly a lifeline to me at dx.
Amy - Greetings to your buddies!
Gaia - wishing you the best on your tx. I have no experience with chemo, but I'm sure others will chime in.
Dune - praying for clear brain MRI! and good luck with second opinion.
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Linda
I'm not having chemo I'm having targeted therapy and Hormonal Therapy
I'm having tamoxifen- can you speak to your experience of that? did you have bone pain or hair thinning or whatever?
Thanks
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Terre, omg love the picture! We don't get to see that everyday, a sheep walking up to the window. Your cat looks intrigued!
Dune, glad you checked in and praying your MRI is clear!
Hey Linda, how are you? Hope you're having the same gorgeous weather weekend we are here.
gaia0132, I was on Tamoxifen for the first 2 years and experienced no side effects whatsoever except for mild hot flashes. In comparison to the letrozole I'm on now it was a walk in the park. I hope it is for you too, I can't speak to the Herceptin as I have never had it.
Hugs to all, Annie
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Gaia, I have not had any of your treatments but I want to respond because I always sort of felt the way you do regrading being nervous about SEs and never taking even tylenol before. But ever since cancer I decide "say yes to drugs"! Lol. I am a wimp and I don't feel good from a treatment then I want something else to make me feel better, like ativan etc. And now I take whatever I think will help. I am also one who researches to death every drug they want to give and dread the effects, assume I will have to go on disabilty just from the meds when the cancer doesn't even give me pain or anything. However I have learned that I never get SEs as bad as I expect and ever since stage iv have pretty much felt normal and work full time, the only SE so far. Being tired. We all are very different with SEs and I had no trouble at all with letrozole and was really disappointed to stop it. I am however scared of Afinitor but if I tried it I would probably have no trouble. So just hope for the best and when you see the TMs coming down it is a huge relief. I became a lot more relaxed about the whole thing when that happened. Also in the beginning I think I was very fragile emotionally and had to be careful what info I read lest it send me into depression and a crying party. Now after 3 years of mets I don't really get fazed by anything I read no matter how dire. I just kind of assume I will stay good and live in denial I suppose, but I'm not very bothered about the terrible possibilities anymore. I imagine that will change if things go south but I will deal with that at the time.0
