Bone Mets Thread
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cross posting
Hello everyone, I'm more of a lurker, but right now I need your collective help if you could please guide me in the right direction. Today my onc advised me that Ibrance/faslodex doesn't seem to be working based on the TMs rising. I had a PET a month ago and the report said lesions were healing and no new growth. I've been on Tamoxifen prior to mets dx, after mets I've been on Arimedex which worked for a year and a half, then Exemastane which only worked for three months then Abraxane which was working when we switched to Ibrance/faslodex. I convinced my doctor to continue same treatment this month and give the combo a chance to work this would be my fourth cycle. The TMs went down after the first cycle but have gone up on the second and third. My doctor is going to research what to put me on next. What do you think? If Ibrance/faslodex is not working what would be next? I appreciate any comments or suggestions.
Aurora
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Hi, Aurora! Good to see you, although I'm sorry about the concern you have. I just responded to your question on the other thread, but I do think your gut instinct is correct -- that you need to give your current regimen more time, especially in view of recent good scans. It sounds like your onc may not have enough experience with Ibrance to realize it doesn't always lower TMs for several months, during which time they often go up before they come down.
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Hi all,
Still on vacation but trying to keep up with all the posts. Especially thinking of you, Cristina, and your MSK day today.
Patty--I loved seeing back to school pictures. Those always make me so happy.
Sending my love and friendship.
Rachel
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Aurora - It seems to me that a tx change is premature based on your latest scans a month ago. I'm not on Ibrance myself but read the thread all the time. Rising TMs are so common at the beginning of this tx. Trust your instinct. Do you have new symptoms or new pain? That may help in your decision making.
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Christina
I'll be at MSKCC today from about 830 until 11. You can pm me so maybe we can meet
Babs
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aurora,
I'm wondering the same thing,excepts I had definite progression on Ibrance/Faslodex but my Onc is staying the course for now. So I find it interesting two people, one with confirmed progression and slightly rising TM's(which are still in the normal range) and another with rising TM's and no confirmed progression with scans, would change treatment. It's all very speculative and worrisome of course.
I've had a hellava time on Ibrance and after lower dosage, settled in only to have it not work. I really wish it would have because I feel chemo is my next option and I just don't want that again.
Anyway good luck to you.
Amy
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Hi everyone,
Aurora, Because of everything I have read on these discussion boards and elsewhere, I have to agree with others. Your gut instincts seem right to me. It seems like your onc should try your current plan a bit longer. Sometimes I feel like there is just so much that is still unknown about our cancers and the treatments and our bodies' reactions to treatments, that doctors are not clear on what decisions should be mad for each of us. I am sorry that your tm's have risen, but I have read that it sometimes happens even when that treatment is working. As far as next treatment is concerned, I thinks hat either Xeloda or a clinical trial would probably be the next step for me, but that is really just a guess.
Sometimes I feel that we are lab rats and no one is certain what the outcome of any particular treatment will be for any one of us. I know that sounds bad. I do have faith in oncologists, but there is still so much to learn.
Cristina, I am thinking about you today as you go to MSKCC. Sending you hugs and prayers.
Lynne
Have a good day.
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Aurora. I also feel you should stick with Ibrance/femara. It's the scans that matter most. And with ibrance the TMs usually go up before they go down. I think we all need to be our best advocate. We know what we're most comfortable with
Babs
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Waves to Babs, Lynn, Linda, Jen, Gracie, Zarovka, Fitz, Lynne, Stephanie, Rose, Steelrose and anyone else I missed.
Carol - I'm hearing you roar and thanking you for reminding us to be strong advocates for ourselves when the news of progression arrives!! Sounds like you have a good plan in place and hoping that Xeloda is very effective for a very long time! I know Ibrance SEs were very difficult for you so perhaps X will help QOL for you too! And I now have a new visual for cake decorating...
Alcarrol and Gracie - Sorry you are here, but the Club Members are awesome! This is my go to place for inspiration and truly helpful information! A warm Welcome to you!
Dee - Hoping things are getting better on Ibrance for you! The first few months on this drug plus Letrozole I felt truly mortal with lots of aches and pains and fatigue. I just finished cycle 10 and while I had to drop to the 75 mg dose, it still appears to be working and the SEs are much better. Wishing for great success for you in the trial!!
Had quarterly scans yesterday and my Onc said things looked good on the pictures he reviewed and he may be willing to go to quarterly appointments rather than monthly since my numbers are staying steady on the new dosage. Formal radiology results come back today. He does think a PET scan is a good idea to confirm things. Hoping I'm about to hook up with NED.
Planning to obsess less for the next few weeks. Sending healing wish to everyone.
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Kathryn, Woohoo for those preliminary results on your scans! Good news from others always gives me an emotional boost. I hope you do hook up with NED. That will be time for my big happy dance. Quarterly appointment? Wow! It sounds like a dream to me right now. Between my loading doses of Faslodex and my blood tests for Ibrance, I feel like I should just camp out in my Mo's office these days. Lol. Let us know the details of your final report on those scans.
Lynne
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Kathyrn
That's wonderful news. 👍👍👍👍
I just met Christna for a few seconds. I'm a total crazy woman today!!! I couldn't see my regular mo today at MSKCC cause she's away so I agreed to see another MO only if I could be seen at 9 since I had a 10 am cardiologist appt due to heart irregularities just found and I have a wedding this afternoon and really wanted some time for hair and makeup. The mo knew about the cardiologist appt. after waiting 25 min I asked where the mo was and reminded them about my other appointment. Since I was supposed to be the first appointment of the day this was annoying. I then asked if they could order my Xgeva shot so I would not have to wait more. The shot came at 1010 and they wouldn't give it to me unless the dr saw me first! No clue as to when I'd be seen so I just left. But met with Christina in the waiting area. I'm sure she thinks I'm nuts. I was so aggravated. Ran over to the cardiologist and had EKG plus other tests and am waiting more
I think it's unconscionable to make anxious patients wait so long! I've run medical practices for over 10 years now and wouldn't have patients if I ran my offices this way. Just because we're cancer patients and have to have the care doesn't mean we should encounter this treatment. Sorry for the long vent but ....
Babs
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Oh Babs, what a day! I am surprised that your EKG results weren't crazy from all the stress you've been going through today. It amazes me that some medical practices find it acceptable to keep people waiting and yet are unforgiving if patients arrive late. I hope everything gets straightened out in time for you to,prepare for the wedding. I am glad that you were able to say hi to Cristina. I know she is going through some rough times.
Alcarroll, I don't think that I gave you a proper welcome, so welcome to the bone mets thread. I am sorry you have reason to join us. You have already discovered that you are joining a group many wonderful people.
Lynne
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Iwrite!! Great wonderful news. I hope you have a great time with Ned!!
I'm not on X yet but that will be the next step if faslodex fails. I just want to dance with Ned too so I'm sure you will share him with all of us.
Babs, I felt your frustration. My BP is alwYs high before I see MO and half the time it's because of waiting. I have been thinking of Christine all day.
Patty- I'm just thrilled that X had you feeling better. Please share what you think the comparable SE of the drugs are.
Hugs Carol
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Carol, I'm sorry to hear about the Ibrance failure but am glad to see that you are in good spirits and remain positive. I hope that Faslodex is the answer and starts killing off the enemy immediately. I swear that positivity is half the battle, and you have always been such a shining light here, inspiring the rest of us to think positively regarding our own status.
Lynne, AmyQ, Cristina, Kandy, and others who I know I am right now forgetting who have experienced progression lately, I am thinking of all of you. I read here daily but don't post much, but just know you are all in my heart. It makes me sad every time I see something bad happen to someone here.
One of these days I might take Carol up on her offer to everyone to hook us up for a second opinion at Dana Farber. What's a small flight to Boston, right? I'm thinking my DH and I could make a vacation out of it somehow, maybe to enjoy the fall colors that we don't really get in Texas. The center that is much nearer to us is MD Anderson, but it doesn't seem they are at the top of the heap in breast cancer, and if I'm going to travel, I may as well go somewhere exciting. (Houston is decidedly NOT exciting.) Quite frankly, from Dallas, where I am, it's just as hard to get to Houston as it is to get to Boston. Lots of traffic if you drive the four to five hours from Dallas to Houston, and the same headache with flying as going anywhere else. I wish Dallas had better medical facilities. We do have one NCI-approved facility, which is where I am treated, but I'm pretty sure it's the bottom of the heap on the national list. I think the doctors and researchers are on top of their game, but the overall experience is lacking something. But then sometimes I wonder if I would really love it anywhere where cancer is the main subject. More than anything, I just wish I had a doctor who I felt some connection with, but I guess I can't fault her so far as I'm coming up on a year since diagnosis and still kicking! My main frustration is that she doesn't seem to care when I tell her how tired I am from the Femara and Zoladex and how it has completely ruined my ability to function. The fatigue is just unreal, even when I exercise. I'm sleeping 10 to 12 hours a day, and I'm only 50 and don't have any other medical issues to cause this. I know that on the other hand the drug combo has kept me alive and from progressing, which is a godsend, but I'd just like my doctor once to acknowledge that it sucks to be so tired and out of it all the time. I know there's not much she can do about it, but for crying out loud, would it kill her to say "I know, I'm sorry." When I bring it up, she changes the subject. My white count has remained in the low to mid-2 range for almost a year now, and I would really think this has something to do with it, but she balks every time I say it. From reading the Ibrance thread, I feel like what people describe on Ibrance, even though I'm not on that drug. Sometimes I think I just need a younger doctor who isn't quite so burned out on us cancer patients yet. ;-) The doctor I see is at an age that has to be on the cusp of retirement any day now. I often wonder if it's the Zoladex or the Femara causing the most fatigue, or if it's maybe just the combination of both. I will be seeing her in about three weeks, and if this visit goes as frustratingly as the last few have, I think I'm going to make a change. Out of the last three visits, two of them she has brought some other clinician along with her, and she acts very different when that extra person is in the room than when it's just her and my husband and me.
Sorry for that long, rambling paragraph. I guess I save it all up and let it all out at once! ha I'm very glad that I'm stable right now, but with my year anniversary of mets diagnosis coming up, I guess I am a little more nervous than usual.
I hope you all have a good long weekend with your families. It sounds like there will be a lot of rain coming on the East Coast, so snuggle in and get ready for fall, enjoying the pitter-pat of rain on your homes. The sun will be back before you know it!
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Lovelife,
I can strongly recommend a place for a second opinion that is easy for you to get to (and we get lovely fall colors too) Kansas University Medical Center. Quick flight to KC. Seriously, if you are interested, let me know and I can direct you to one of the cancer center sites (not at the med center itself) for a second opinion. Both my MO and RO tend to my QOL always!
You can pm me or just reply here if you want more info. (Btw, KU med is NCI accredited)
((Hugs))
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Lovelife, Extreme fatigue is the pits, so I am not surprised that you have trouble dealing with it. Energy feeds everything we do. Without that needed energy, it is hard to cope. I encourage you to see another oncologist. You are the patient and are (or certainly should be) the center of the universe during your exams and office visits. None of your concerns are minor enough for your doctor to dismiss or ignore. You deserve to have an MO with whom you are comfortable and in whom you have confidence. I think you have none of that now. Is there another onc in your area you can go to for a second opinion? It sounds like your treatments are keeping you stable, and that is great. I just hope you will be able to find a new onc who will continue to provide good treatment but also have more of a connection with you and respond to your concerns.
Hugs from, Lynne
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Lovelife...just a thought...I have a friend who is a dermatologist, and she says that the increased patient load (thanks to the new insurance issues: A double-edged sword because YES, more people are covered now but not all hospitals/clinics have hired the extra help needed) means that drs can't address all the issues patients bring up. They basically gloss over some issues like fatigue and hand/foot syndrome or don't even answer the question! But that's no excuse.
My MO has absolutely NO bedside manner whatsoever. I have to see her every 3 wks, but now that I have my SS disability nailed down, I may switch. (SS told me not to switch until they had all the paperwork they needed from her.) On the other hand, I adore my Rad Onc. He's takes all the time I need and is the sweetest because he is a cancer survivor himself. There are good drs and bad drs out there, and that will never change. You could get someone who was the very top of his/her med school class but simply doesn't have the personality to deal w/patients (these drs should have just stuck to research IMHO).
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kaption. Great news overall from your scan.
Alcarrol. Do you live close to Disney world? Do you Have only the 7 year old ? Sounds like exhausting fun. Take lots of pics. Good memories indeed
Aurora. I am chiming in with all the others. Seems a little premature to change tx. Re funal decision is yours not your Mo's. All Mo are different but mine said won't change tx based on my only. And your scan was good.
Rachel \ bluefrog. - where are you at for vacation ? Hopefully somewhere tropical with someone pampering you.
Carol. Keep up the roar !!! I love it. The only see of X so far have been mouth blisters but I can live with that
I write. Hoping you et to hook up with Ned for a long time
Babs. Cook you met Christina. Got pics ? What a frustrating day you had. There is always a long wait at my Mo office. When do you get results from heart test ? How exciting to hear X has been good to you for 9 months. Yea !!!
I've had another good day. Woke up with another migraine and back hurting but felt !much better after my meds. I see Mo tomorrow and will have him check my thyroid. I always get migraines when it is off. Ds1 been home sick. This is the 3rd day he missed school. Hoping he will go back tomorrow. Ds2 had it last week. Praying I don't catch it. I am just so excited to think X is working !!!
Hugs to all.
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Hello to All,
Wow! What a welcome! Thanks to all that took the time to welcome me.
Pattypeppermint - pretty close to Disney, about 4 hours away.
Topic of conversation - food and what we are eating... again, I am new to forums so if I'm posting in the wrong place or showing poor etiquette - please let me know! I've been doing a lot of reading about fighting cancer with food choices and what we should and should not be eating. My husbands making me kale, chia, unsweetened almond milk, hemp seed, flax seed, spinach smoothies twice a day. Anybody ever had a kale, chia, unsweetened almond milk, aloe, hemp seed...smoothie? They're not great. In any case, I'm choking them down and any other combination he whips up as I've read repeatedly, a plant based diet is best at beating this thing. This is a pretty radical change from my previous Diet Coke and chocolate donut habit! Anybody have any opinions on diet?
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Alcarrol - Oh how lucky you are to have those smoothies prepared for you! Just a word of caution, and there is some controversy over this, but both my MO and pharmacist told me to avoid flax seed as it is a phytoestrogen. Assuming you have hormone receptor status.
Kaption and Kathryn - YAY on good results!
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Alcarroll,
I do watch my diet, but try to live in the real world too. I've been a vegetarian for 16 years (before my first bc-but I believe it helped me heal from Barrett's esophagus, which is precancerous and supposed to never heal)
Anyway, I eat organic as much as possible. I eat eggs from "happy" chickens (I shop at Whole Foods) and I've tried repeatedly to stop dairy- but always go back to cheese and some yogurt. I don't drink milk because I don't like it. I use almond milk on cereal. Again, on the dairy I do eat, I try to get the healthiest version I can.
I have really worked on eliminating added sugar since my mbc diagnosis 3 years ago. This is a weakness of mine. Never liked soft drinks, but I do like bakery goodies!!
I do get the Whole Foods version of your husband's smoothie, but they add apples and maybe some other fruit to make it tastier.
So, food choices are important to me but I'm sure not perfect!!
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Alcarroll, you might enjoy the Radical Remission thread that Carol started (just search that term and it should come up). I too have been cautioned against flaxseed for ER+. Lots of opinions out there on nutrition. The guy I'm listening to right now (a MD who is helping me to reboot my innate immune system) is preaching no dairy, no sugar, no gluten, no soy, lots of protein (60 grams+) from fish and chicken, lots of veggies and fruit, water, and four hours of moderate walking per week. Sometimes I prefer to listen to my MO who tells me to eat whatever the heck I want
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A dietitian told me that I could have flaxseed a couple times a week and it wouldn't kill me.
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I am newly diagnosed with bone mets and am so sad, I've only just found out from an incidental XRay for a frozen shoulder. I'm scared and fearful for the future and could do with some positivity and hope if any of you have some to spare me. It's my first visit and the thread so far has given me strength. I have no pain and the plan is 6 months chemo and then hormone therapy, at least there is a plan, and my Oncologist has boundless positivity talking about remission for decades. I can hold that hope for a few minutes and then I crumble again, I'm guessing that as the news sinks in Iwill get brighter
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Vevs, Sorry you were just diagnosed but we are here to help you. Is your frozen shoulder the result of shoulder surgery? Where are your mets located at this point? Please fill out your signature status as that will give us a better look at your diagnosis. The fact that your MO is positive will help you immensely. It is very natural for your emotions to flip flop as you begin to navigate your way. It sounds like you have a treatment plan which will help you cope, move forward and help to ease anxiety. Lots of wonderful, understanding and seasoned advice on this thread.
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Good morning!
Popping in to say hello and wish everyone a safe and enjoyable Labor Day. Welcome to our new members. I'm on my way to the north shore of Lake Superior for my LAST destination wedding. One of my nicest couples is getting married. They met later in life having never been married before and I cannot wait to celebrate with them and their families. Plus what a view on the rocky cliffs of Superior!
Here's to the summer of 2016. I will miss you.
Amy
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Vevs, welcome, but so sorry that you have to be here. My mets were also found due to a shoulder problem which they thought was a torn rotator cuff. What a shock! Hang in there! I have extensive widespread bone mets in almost every bone in my body. I am 17 months since diagnosis and NED after 13 months of Ibrance/ Femara and/ Xgeva. My onc is also very positive, says maybe we can't cure it but we can sure knock it back for quite a while. Read all you can here, lots of great support and information.
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Hi Vev.
Welcome to the bone mets thread. I am sorry about your recent diagnosis. It is normal to feel sad, frightened, angry, confused, and all sorts of other emotions. I am glad that you have an onc with a positive attitude. We can live A long with this disease. My life is active and normal in spite of bc. As you have already been told, there are many people on this thread who will answer questions and give you support. it is a great group of people, and I have gained wisdom and strength from them. We celebrate everyone's good news and help each other through the difficult times. It is good that there is already a treatment plan in place. Do you know when you will begin chemo?
Hugs from,Lynne
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Amy, Have a great time at your last wedding. We are heading to Pictured Rocks National Park on Lake Superior next week.
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A must click on this am to start off our LABOR DAY weekend!! If we are going to make anything contagious... let it be this!!!
https://www.youtube.com/watch?v=CevxZvSJLk8&list=RDCevxZvSJLk8
Hugs, Carol
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