Bone Mets Thread
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Fight you got so much good advice, good luck.
Jensgotthis hey how are you managing? Nice to see ya.
Nancy do you feel Micmei right behind you and all your support group? Go for it. It's hard but they need to listen. What's with this, it may be a tumor? Can't they scan it so you will know exactly what you are dealing with?
Booboo1 so sorry you gotta join this wonderful group of ladies. I can't answer all your pressing questions, I could say that my DD and many ladies here have extensive mets through the bones, and like my DD even in many other areas for many people it's years and years. You have lots of treatments ahead of you. Of course the less the better, it's just easier to see it disappear when a treatment works. But to give you a real prognosis I am not sure it would be fair, because aside from the mets, your personal medical History, and your pathology have much to tell about that, and with all that, we know fate is mysterious.
I do think it would be good to speak with your Onco what the plan is for the next scan if you are in so much pain, radiation is certainly a possibility and it would make you feel better, but they don't run to radiate, they hope for systemic treatment to work, and only when it impairs someone or if you have so much pain that it affects your QOL they will radiate. Again of course it depends who is your doc and where you are etc..etc…
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BooBoo, I was diagnosed in August of last year with extensive mets to the bone.
I had significant spots on my left femur my left hip my lumbar spine my middle spine I'm not sure exactly what that's called but the T's, ribs on both right and left, both front and back on both sides, skull and a soft tissue tumor on my right chest wall where I had my original cancer and had a mastectomy. I don't know if it makes a difference if you have a bunch of them or one although my mind tells me that one is probably easier to treat, but you're in here with a whole bunch of us to have many spots. I'm sorry you had to join our group that you're in a great group, with a lot of women that are really super knowledgeable about this disease! Not only that but everyone here is really compassionate and is here to listen if you need to talk.
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hi all!
Just popping in to say hi & try to get caught up on the last 10 pages, wow this thread moves.
Had all my scans last Monday & while I only have the bone scan results back, it was good, I get TM's & CT results on Tuesday. Bone scan shows mets are stable & improving. I did have a panic attack on the table (how embarrassing) but got through it eventually. I'm starting cycle 11 of Ibrance 100mg with brand name Femera. I feel good, my bone pain is gone, haven't taken even a tylenol in 4 months & I'm not having any of the exhaustion that some do. However, my hair is getting so thin, but I got it chopped into a pixie cut & everyone loves it, so I'm going with it.
I read that lots of you are struggling & I debated whether to post, but feel that we need to hear the good too. hugs to all of you, miss you but I need to be here a bit less & try to enjoy life. take care, cheers, dee
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BooBoo,
Sorry you have to be here, but your are on a great thread. Many people will tell you that if you have MBC, having mets to bones only is the best chance for long term survival. You appear to be on a good treatment. You will get better advice if you fill out your medical profile showing your ER/PR and HER2 status.
My wife, KD, was diagnosed just over a year ago with Stage IV out the gate (de novo). She has mets to her ribs, pelvis, right thigh, and almost every vertebrae, along with extensive mets to her liver. Her onco focuses primarily on her liver, however, the Xgeva shot is for her bone mets.
Just from her experience, pay attention to pain in your back. You can be susceptible to a compression fracture.
Things will calm down soon, I promise.
Louis
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Hi All,
Joining this thread as I have bone and liver mets. Diagnosed stage 1B in January of 2015 and stage IV last August. Tumor in femur was so big that I had to immediately go through a hip replacement before the femur fractured. Am batting 0/4 treatment protocols so I am getting a little anxious for something to work. Started on Ibrance and Faslodex at the beginning of the month. Take Xgeva once a month. Have lymphedmia in my left leg after radiation. Am so grateful for the knowledge and perspective of all the amazing women (and men) who post on BCO.
Kimberly
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Welcome Kimberly! Keep us posted on your progress. you have had one heck of a year.
Dee - congratulations on awesome scans. We do love good news here. thanks for stopping in!
>Z<
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I've got lymphedema in my right arm! Started this afternoon. Haven't had it swell like this in quite a long time. My dog scratched me yesterday and broke the skin in three places....grrr...elevating all night tonight
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So sorry to hear about all the lymph edema suffering 😣. I was told by a bc survivor that you can get it even if you haven't had a mastectomy.
Back is really hurting, so off to the massage recliner...AGAIN.
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I'm heading out for a week in Yosemite with my son and a few family friends. I hear there's some snow, some rain, and the waterfalls are rushing. This is one of my favorite places on earth and my goal is to see it in every season. This will be my first time during winter. If I have internet, I'll post a photo. I think of everyone each day. Sending hugs and hope to all who are struggling, and celebrating with all who are getting good news.
Momall, I'm doing good overall. Working way too much, hence my need to take a vacation. My biggest complaint right now is I'm gaining weight on this new regime and need to get it under control. Hope you're tkaing good care of yourself, and I hope Dani is having good days. I'm keeping up with your posts and holding out hope that her treatments will get her to a good place.
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Welcome Kimberly and Booboo, unfortunately place to have to be but as many other said an amazing group for support and information! Kimberly, I was also initially diagnosed early 2015 and found bone mets in Jan. I did have radiation as there were worried about one of the tumors at t 4/5 collasping my back. I am now on my 3rd cycle of Ibrance and Faslodex and after recovering from the radiation, I feel pretty good. I will have my 2 round of scans next Friday. I am so nervous! Have been feeling some pain in different bones....hoping it is just my imagination.
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I'm planning on going to a komen sponsored conference for MBC and complementary therapy. Let me know if you have questions you'd be interested in getting input on from their speakers.' It's on April 8 in Long Besch
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Joining this thread; PET/CT 2 days ago showed mets to sternum and rib. Even though my bone density t-scores are -3.8, -4.9 (in 2010, my last dexa), I haven't taken any bone drugs (personal choice). Thankful no frx. MO wants to put me on either denosumab, zolendronic acid, or pamidronate. My understanding is that these are for the mets and NOT for helping bone tissue survive the chemo. I also have mets to lung (a little) and 2 soft tissue areas in my neck (maybe former lymph node).
My question is: Are you on a bone drug? Which? What SE do you notice?
Thanks in advance!
(I'm also weighing out rads. Chemo plan not yet selected. Head still spinning...)
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Kimberly~ welcome! I am sorry it has to be under these circumstances though. But you'll find the people here are wonderful and in some way or another we understand. I was stage four out of the gate and I am still in shock. This a wonderful medicine. Seem so to be working form a lot of people here. I also have lymphedema in my arm. I just woke up telling it, "why can't you just go away". I know how annoyingly frustrating it all is. You're not alone
Sending welcome hugs. ~M~
booboo~ welcome as well. Lots of support and kindness here. Hope this medicine works well for both of you. There are women on this board that are into double digit months on this medicine. They are filled with helpful words and knowledge. Sending prayers to all. ~M~
Chirps~ I take an Xgeva shot for my bones monthly, it burns slightly when they do it but usually (for me ) I get bone and muscles aches one to two days after the shotand it is miserable. But luckily (for me again) taking Claritin helps me tremendously, I take it everyday for try to help control joint pain and allergies also. As Z has notes in the past. There is studies that show the active ingredient loratadine since it's an allergy medicine combats any underlying however small these medicines may cause that we are having to take. I look at it as a safety pin! Bless you all
~M~
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Hi again - sorry for having popped in and just as quickly popped right back out. It's been a whirlwind month since mom died and my bone mets dx. Dad has kept my sister and I incredibly busy; he's not doing well so I'm spending more time focusing on him right now. It keeps my mind busy at least.
My MO had wanted me to start radiation on the rib mets right away; the tumor board asked for a biopsy before starting radiation (I suspect to determine receptor status, which makes sense). I had actually gone as far as to meet with a thoracic surgeon who didn't want a biopsy but rather a rib resection. That felt really uncomfortable to me and after talking with my PA at length, as well as a few members here, I put the surgery on hold and am instead meeting with Univ. of Michigan this week for a second opinion. My DH and I have decided to switch my care to UM at this point. I love my current MO and appreciate the convenience (3 minutes from home) but given where I'm at I feel like I need to be much more aggressive and I think UM will give me that. So - still don't know what the plan is, hope I will later this week!0 -
Nancy ~ I am so sorry to hear of your mothers passing. Your father is lucky to have you and your support. I find that you are amazing to be there for him so much, while battling this stinky cancer.
In 2009 I was injured in a tubing accident and I had thoracic outlet syndrome diagnosed two years later after four operations. During the last operation, I had a complication and lost the right function of my lung. I did not have a cervical rib removed or resected because the nerve through the thoracic outlet wasn't terribly infringed and he could manipulate without cutting the rib. It sounds like this is where your mets is. Get several opinions before you let anyone mess with the thoracic outlet area. It is the nerve center of many functioning messages centers in your body. I have such problems with only one lung and I would hate to see you have any complications like that from a surgery that maybe doesn't have to be done. Instead at least trying the radiation before such a major surgery. It was a very painful long surgery.
I finally ended up at the university of penn hospital in philly. They are number five best hospitals in the nation. I still had that complication! Don't take any chances. Many opinions. Is my opinion. You have a vascular system that runs through there as well. Removing a rib can be done. But there are some complications that could arise as well. Horners syndrome, stroke, collapsed lung , paralyzed hemi diaphragm. It's no picnic.
Not trying to freak you out. But just want you to be safe. Keeping you all in prayer. ~M~
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Hi Dee great to hear you are doing well, never feel bad about posting good news it gives the rest of us a lift. So you are now on letrozole too that the only drug I'm getting now and I'm having a bad time with it. Lots of side effects no ibrance for me the drug company refused to unbound the study so I could get it. One word for them "assholes". I'm so happy for you Dee
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Wendy - Letrozol s@#ks. It does. Off to limp through my daily jog.... thank you letrozol.
Welcome everyone new. Have a great weekend.
>Z<
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Lita, thanks and I hope you got some relief from your pain last night.
GG, congrats on good scans! Pray you continue to improve!
Jen, my daughter and her family are in Sun Valley Idaho this weekend, skiing and generally enjoying life...have a wonderful time!
Perky, hoping for good scans for you!
Chirps, sorry you've joined us, but honestly once you get on a plan things will even out. I'm on Femera and XGeva and it appears to be working!
Nancy, praying you get a plan soon, and it kicks cancers butt! Again, am very sorry for your loss!
Slept in the recliner last night with arm elevated all night. It helped.
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I must be the exception to Letrozole. I didn't have any side effects at all. Problem was it wasn't working so doc took me off. Sorry to those with bad side effects
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Wendy, I had a terrible time with letrozole as well, it was awful & my MO at the time was such a cow that she said well you should just put up with the SE's. It turns out that any of the generics are very hard on my joints & I get such bad dry mouth that my lips are peeling & no amount of chapstick will touch it, So Dr S put me on Femera. The BCCA pharmacy wasn't happy about giving it to me, but the only SE that I have is hair thinning.
I wish they could get you into the Ibrance trial too, but I know that letrozole is a powerful drug. I am hoping that Ibrance will be covered at BCCA soon.
Can you ask Dr S to change your prescription to Femera? She was more than willing to go to bat for me on it.
cheers, dee
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GG27- can your doctor just prescribe Ibrance for you and not wait to get in a trial. I applied for the co-pay card and only pay 10.00 for each prescription
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Dianarose, I don't know if it's available yet by regular prescription, I get it from our Cancer agency pharmacy at no charge because I'm on the trial. It was only approved here in Canada in May. And every health authority has it's own rules but when it becomes a benefit to our cancer agency you get it at the hospital pharmacy at no charge, it's considered part of your cancer treatment. I only mentioned this to Wendy because AFAIK she has/had the same MO as I. cheers, dee
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- GG- being in the trial do you know for sure if you are getting the Ibrance
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Dee aren't Femara and letrozole the same thing
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Dee I was also told hat I wasn't able to get ibrance because right now you can only get it if it's your first line . Seeing that I was getting the placebo for a year it would be but until they unbound the study the pharmaceutical company can play this game with me which I think is so unethical considering I put up with their shit for a year
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Dee. Never worry about sharing good news!!!! We love to hear of success for any of our BC sisters!!!
To all the newbies here So sorry you have to join us here. But you've found the BEST people- they educate support and guide each of us through this terrible maze of bc
Babs
DiD Wedding is a week from Sunday!!!! Can't wait!!!
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Well, I FINALLY went to Mayo Rochester for a second opinion and I'm REALLY glad I did...the ONC was amazing, very thorough and easy to talk to. She specializes and does significant research in Triple Negative BC. Because of my bone marrow biopsy showing very different results from my original breast biopsy....90%+++ ER + to 0% ER+ she feels the bone marrow testing probably was not accurate and I may not actually be Triple Negative. Considering my response to Xeloda has been very good, she recommended continuing on it for now. When the time comes that things are going downhill, I plan to go back to Mayo for the biopsy and see her for treatment suggestions / review clinical trials.
I know a few of you have been discussing Zometa...I started monthly infusions last May...as several have stated, I had a flu like reaction the next day following the first dose but no problems since. My infusion goes over about 30 minutes and I have them run in some extra fluid. I should be changing to less frequent Zometa doses after one year.
Opinions please...is it appropriate to tell your primary ONC that you got a second opinion ???...I have been happy with him, just thought it would be a good idea to have someone else look at my case.
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Stilts -
If you primary oncologist is any good they will be thrilled to get the perspective of the Mayo clinic onc. Doctors project confidence, authority and certainty, but in fact this is a very complicated space, they are human and there are always a lot of questions about what is right for each patient. The good doctors are interested in the perspectives of others.
However, if he is not thrilled, you still tell him. You also tell him what treatment plan you have chosen. It is your right to get a second opinion and your responsibility to yourself to request the treatment you feel is best.
Thrilled or not, give your current doctor the contact info of the mayo doc and ask (direct?) him to have a little doc to doc tete a tete about you.
Nice job. The issue with bone marrow tests is well documented and understood but I am always surprised how many doctors rely on them for treatment decisions. This is what second opinions are all about.
>Z<
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Stilts, I went to Mayo as well for a second opinion. Amazing facility isn't it? The oncologist I saw there automatically sent her notes to my MO, so when I saw him again, he already had read through them etc. I believe that is common practice now unless you request they don't send a report to your physician.
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waving h
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