Bone Mets Thread
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Great pic Rachel! So happy to see your smiling face!!!
Linda, good luck.. thinking of you!
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Rachel - love the pic and your new avatar!
Caryn - congrats! Miles is beautiful and what joy he will bring to your family.
Update on appt with Ortho this morning: indeed there is a fracture but the good news is that it already started healing. He said it must have been there for a while if the healing process has started. No wonder it was hurting so much a while back. Strong possibility that it is a spontaneous fracture from bone strengtheners because of its location and appearance but cannot rule out a stress fracture from a fall this winter or from the badly damaged bone from met. Met is stable. Nothing else to do as rod is already in place and no restrictions for walking etc. Other femur is OK. So good news all around. Thank you ladies for your support.
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Beautiful spring here in Spokane. It is helping my grief. Thanks momallthetime for your kind wise words. Crying in my oatmeal this morning and it feels right. I am sending thoughts of peace to you and Dani as you work to make the best treatment choices.
Caryn Beautiful baby boy. So happy for you.
Bluefrog I love the camping picture. I hope to hear more about your conference once you have sometime to share.
Lynn Wishing you continued good health for your husband.
Peace to all
Mary
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Mary, So sorry for your grieving I wish I could wipe those tears away by hugging you and going out to a nice lunch.
Linda- I am so happy to read the GREAT news!! I can feel your relief!
It's a sunny spring day in upstate NY, was much warmer yesterday but no complaints. Sunshine always makes me smile.
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Good morning all!
Linda, good news! Hope your pain lessens with the healing.
Caryn, lovely pic of the baby, thank you for updating us.
Rachel, love the pic. So exciting to hear that there is lots coming for us.
Mom, I don't have any xgeva advice for you, but I love that you are so dedicated to Dani & to all of us.
Lindalou, thank you for all your support, you have no idea what it means to me.
Mary, ((hugs))
It was a record breaking temp day here yesterday, 73f, so DH & I went for a drive along the coast after my labs. Heading out to the garden if my back & hips can handle it. Hope everyone else has a lovely spring day. cheers, dee
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Caryn,
He's such a beautiful baby - you must be very proud. And what a thrill to be there at his birth. Congratulations.
Amy
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Dee,
I'm in Anacortes and the temp was 77 yesterday. Love love love the warmth.
Amy
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Nice pics ladies-babies, adventures, flowers!
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Caryn - congrats on Miles' arrival. He's absolutely delicious. Oh how I love the smell and feel of a new baby. Please share more photos!
I am happy with the consult with my radiation oncologist. He's going to zap my bone met on the pelvis starting in about a week and I'm thrilled. A spot on my elbow also showed up hot on the pet scan but no further imaging was done so they're going to hold off on that one for now. It's going to be an intense two months with these rads and surgery in May. Happy to have stuff moving forward to get this cancer out of me
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Sue, I take a plant calcium and it has D in it. Easy on the tummy- Brand name is Garden of Life. Congrats on your TM's!!! As for the other thread, I won't be back-- it's not worth it- Stress plays a factor in our MBC- that is what is important!!
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Jen-that's great that things are moving forward for you-progress always makes us feel better!!
Caryn-Miles is just beautiful. Enjoy loving him!
Mom-I get my Xgeva shots approx every 28 days.
Rachel- pretty picture of you and your DD
Mary-love the flowers.
Good nite all,
Babs
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Hi ladies,
I'm new to this group but have been lurking and reading all the great advice. I was recently diagnosed a met to my pelvis and a small spot on my upper femur after 4 years out. Got a bone biopsy, it's ER+ and now changed to PR+ and her-. Im starting radiotherapy on Monday for 2 weeks. It wasn't causing any pain just slightly stingy from time to time. I had thought I pulled a muscle and asked for a scan and it showed up. I had hoped I could get stereotactic high dose radiotherapy but the spot is larger than allowed area. The pet scan showed thin strings coming from main spot (not visible on mri or ct) which covered a 8cm area although main area is smaller maybe 3cm. Im based in the UK so we don't have Ibrance yet until sometime this year. Onc is going with Arimidex and keeping femara in his arsenal to pair with ibrance when it is available. I'm 40 so getting ovarian suppression shots, vit d, calcium and bone strenghteners. Im pretty nervous about it all, can't find a lot of people using Arimidex for secondary in bone and wondering if this treatment sounds like we can get it under control. Still a bit overwhelmed by the whole thing and slighly disappointed as I hoped the high dose radiotherapy would really hit it hard. Not sure regular radiotherapy is enough (on literature they use the word pallative dose which for me is a scary word at the moment). Apart from the uncurable cancer I'm fit, happy and healthy.
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Hi lily,
So sorry that we are meeting under these circumstances. I had a single met to my femur, no pain or other symptoms.i had rads with intent to render it necrotic, which was successful. I was also on Arimidex for a bit over two years, but the se's were getting difficult do was switched to Femara, which is what I currently take. I have been NED for over 4 1/2 years. So my answer would be, yes, for low volume bone mets, your proposed treatment can be very effective. Take care and feel free to ask me anything.
* I was already post menopausal when dx'ed, so no ovarian suppression was needed.
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Thanks ecbrnxgrl, thanks for replying, you had great success with your treatment, long may it continue. I had spotted your story on one of the threads. That's why I was disappointed I didn't fit the criteria for the high dose radiotherapy as it can render mets necrotic. Not sure regular radiotherapy can do that, maybe it can. I will have to look up side effects of arimidex.
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Hi ladies,
Has anyone looked into the clinical trial at MD Anderson for bone mets and ER+ (nct02366130)? I am thinking about it as an option. My onc says it could be a good next step (I was diagnosed with a met to the right sacrum 3 months ago but exemestane didn't contain it so I have a couple other mets now on my spine). The trial is where they inject a radiopharmaceutical once a month that potentially potentially treats the bone tumors while minimizing toxicity to normal bone marrow. It has been successful in treating bone mets in prostate cancer. I would also switch to another hormone therapy.
Would love to hear opinions if any of you have heard of the trial.Thanks,
Cita
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Hi Lilly and welcome to our humble abode. You will find support here from very intelligent women. My small contribution is just this: I was taking Arimedex for two years with little to no se's. Switched to Abraxane. First cycle of Abraxane I was sick like a dog ( three weeks on one week off) dr switched frequency to two weeks on and one week off and it was much better. I just starte a new protocol Ibrance/Faslodex and so far no negative se's.
Aurora
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Hi ladies,
Caryn, congrats on the newborn grandbaby Miles, he is adorable! He will provide you with such joy!
Lily, welcome! I did do Arimidex for 2 months but my bone mets were growing so I was quickly switched to Faslodex and Ibrance, which I have been on since August 2015. I get Lupron in large doses as my ovarian function will not stop! I am considering oopherectomy as well. I get Xgeva, Faslodex and Lupron shots every 4 weeks plus Ibrance 75 mg orally for 21 days. Fatigue and lack of motivation have been my main side effects but my tummy has been bothering me more recently. I also suffer from pain and take a lot of narcotics for that. Last night I used some DoTerra essential oil called Elevation and I swear this morning I had slightly less pain and a good and grateful mood. I was also reading Radical Remission last night, which always improves my mood. I was on the chapter about increasing positive emotions and there was a lady w metastatic breast cancer, who started a comedy foundation, and she's on Facebook still. I can't remember her name but she's based out of NYC- Rothberg may be the last name? Her story was very inspiring. I really want to work to increase positive emotions and laughter. I have been watching "I Love Lucy" with my daughter and also funny kitten videos which bring a bright spot to my day.
Rachel- wow on camping out! That takes guts without having cancer! Love the new picture, you are glowing!
Mary-those flowers are very pretty!
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Hi Lily, a warm welcome to you but sorry for the reasons that bring you here. I'm on Femara which works the same way as Arimidex. Femara is keeping me stable with minimal side effects. Good luck with rads next week.
Cita, welcome to you as well. Sorry I have no input regarding your clinical trial but please keep us posted. Wishing you the very best.
Aurora - good to hear your new protocol is easy on you.
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Hi ladies,
Some of you may remember my story. Dx with bone mets last June. normal rbc until I started rads, faslodex any zometa. I am extremely anemic. I'm on ibrance which just destroys me. Sunday I was in the hospital. Dx with pneumonia. I've never had pneumonia. I've never felt this sick before -- unless you count AC/T. Has anyone else dealt with this? I think the stress of the last month and a half has also taken it's toll. I'm not sure where to turn.
Rachel
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Rachel, I'm so sorry this has happenened What dose of Ibrance are you on? Have you thought of going for a second opinion? It is always best if you have the resources to get to a cancer center that has a whole department dedicated to breast cancer. I go to Dana Farber, others go to UCLA, MDA, SKM etc. being active here and also with a FB Ibrance closed group, I have seen such negligence when onco are not well versed with Ibrance. I had a horrible experience with my local oncologist. Dana Farber had a whole new spin on my disease and pathololgy report. My blood counts have me tired and more easily to pick up a bacteria. I see you're a teacher, that's a never ending battle.
Hope you feel better soon
Carol
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Rachel1, I'm sorry. Pneumonia is very hard. I certainly remember your story. I have no experience with Ibrance but I also wonder what dose you're on? Like Loves says, a second opinion may be needed at this time. You probably don't have the energy right now, but something to consider when you feel better. I think I read about gals who temporarily stopped Ibrance with an infection. Just want to send you healing vibes and big hugs.
My nurse call today. Onc reviewed all my results and is not worried about femur fracture. Otherwise, bone mets are stable and US for vital organs clean. Happy to continue with Femara. Will see Onc on 2 May as planned but at least I have all the info now.
Patty - waving at you and sending hugs.
Good day to all and hugs.
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Hi Sue!!
I am going to ask about the vaccine when I go to MO next week, thanks for reminding me.
Linda- You must feel so good knowing all this is good! Happy Dance!
Christine- I ordered the book and sent it to my Kindle.. I am visiting my family now and of course left Kindle home. They have me so busy anyway- I am proud of you for doing all you can to remain positive. It isn't easy-- but it's half the battle.
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Good morning all!
Lily, sorry to be welcoming you here, but it's a good place with lots of support.
Cristina, how are you doing?
Linda, so good to hear your positive results. YAY!
Rachel, ((hugs)) I don't have any answers for you, hope you start feeling better soon.
Had my appt with PCP, he has put me on tramadol for the back & hip pain. My next bone scan is on May 16 so we'll see what's going on then. He offered to try to get it bumped up from the usual schedule, but I didn't think a week or two would make much difference. Infusion tomorrow, so I'm heading out to the garden today. take care everyone! cheers, dee
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Dee, I think we need some garden pics soon! Glad you find pleasure in your garden.. and blessed to be able to do it..
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Hello,
I am new to the discussion board world, so please forgive me If I am not doing it correctly. I was recently diagnosed with ILC metastatic breast cancer (with bone only metastases). It was stage IV at initial diagnosis. So it has been a devastating, overwhelming and confusing 6 months, to say the least. I was started on Letrozole in November and was told by my medical oncologist that we would be scanning every 3 months. Since November, it has been changed to scanning every 6 months. The docs feel confident that my tumor is shrinking so they are very comfortable with the 6 month mark. Of course, I am very anxious to see any kind of improvement. I was originally told that I would be getting a PET scan at my first scan. However, when they tried to make my appointment my insurance company told the doctor's office staff that the PET scan would not be covered. When they called to tell me that my CT scan of the chest and abdomen had been scheduled, I was taken a bit off guard because I was anticipating a PET scan. The doctor's have told me that either one will be fine but I guess I'm just looking for a little reassurance that either scan will do the job. I was wondering if anyone here would be willing to share what scans they receive. Do the types of scans alternate?
Any kind of advise on this would be greatly appreciated. Thank you.
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Kmm, welcome to breastcancer.org and the Bone Mets thread! I'm so sorry you have reason to be here, but it sounds like you're doing very well if your oncologist feels scanning every 6 mos. is appropriate. And yes, many of us (me included) have run into insurance companies not authorizing PET Scans. I was very upset about this when it first happened to me, but I was reassured by UCLA that CT Scans and an occasional (at least annual) Bone Scan (for update comparison) and perhaps an occasional MRI (only as needed for a specific issue) gives them all the information they need, and it's all worked out just fine. So what I get is a CT which has worked out to about every 6 mos. (we kind of go with the flow if I'm feeling well and my TMs aren't rising), and Bone Scans as my onc feels are needed to reconfirm that my med regimen is working.
Hope this helps!
Patty, are you home yet????
Rachel, I'm so sorry to hear about the pneumonia. Stress can can take a huge toll on us! In fact, it's how my mets first manifested -- after a very stressful period (our home was badly flooded) and sudden "mystery" illness that was also the sickest I've ever been in my life. So I can totally relate. I guess my only question is -- since you referred to having an especially hard time the past month and a half -- are you happy with your medical care and drug regimen (sorry, I've forgotten exactly what you're on -- is it Ibrance that's the problem???), or do you possibly need a second opinion??? I'm going to go back and look at your previous posts, but don't want to lose this, so will pop back if I can add anything after I do. Are you home now?
Hello & hugs to all. Hard to believe another week is almost gone. They just go do darn fast! Deanna
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Hi Km- I am sorry you are here, but you have joined a very supportive and informative thread. I have bone mets and mine are ILC. My original cancer was 18 years ago in the left breast.
I am being treated at Dana Farber Cancer Institute (after my home oncologist dropped the ball) - I learned that cat scans and bone scans is the preferred way to diagnosis progression, stabilization, and healing. They do not use pet scans (at least not for me)- I always encourage everyone that has the opportunity to get a second opinion at a center that specializes in breast cancer only. i.e.: Dana Farber, Sloane K, UCLA, MDA, and the lists go on. It would be good to know why they chose i.e.: letrozole over tamoxifen, etc.
CT scans (chest, ab, pelvic) can obviously miss femur areas etc so a bone scan is a preferred for that reason so they can compare. IF there is uptake of nuclear medicine to an area they will compare to the CT as to why. My bones are healing and the healing of the bones causes more uptake so that is an example.
It would also be helpful if you could put in some history in your signature line. You can take a look at mine. It gives information that may help with comments.
Carol
Edited to say: Sorry I didn't see where you had added your information !!!
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Kmm- Sorry you are joining us, but I feel this has been the best place to get information. I was diagnosed in November de novo, with ILC Stage IV MBC grade 2, Bone Mets only. I think you can feel confident that the tests your doctor is using will be good at seeing what is occurring as well as providing a basis for treatment. Mine was found via MRI while planning for BC mastectomy and suddenly it was a totally different ball game..no surgery. Since November I've been taking Femara, Ibrance 100 mg, and Xgeva for bone strengthening. We are cutting back to quarterly Xgeva starting this month as it has been working well. My onc has used CT scans throughout this time to see what is happening along with bone scans and this seems to be a standard protocol for bone mets.
Things seem to be settling into a semi normal rhythm here after six months. The medication has resulted in no bone mets showing up on the six month scans. The side effects have been tolerable. The healing caused significant bone pain which i didn't have before the dx. The ladies here explained this side effect from Femara. That does seem to be improving over time.I did need something to help with sleep as I was waking up at 3am every morning in a panic about cancer. I've never suffered from anxiety and this was a new experience. As long as I'm able to get a good night's sleep, life seems good at this point.
Hoping your life is beginning to return to some degree of normalcy. Just seeing the decrease in tumors helped a great deal. MBC is certainly not what any of us had envisioned, but it feels like we may be able to live with it for quite awhile and be active. Lots of ladies on the Board do quite a bit of reading to see what we can do to help ourselves. The Anti Cancer Diet and Radical Remission are two books that have been recommended and I've found them encouraging.
Caryn - Miles is so precious!
Rachel - Hang in there ---They can fix pneumonia! Loved your camping photo. Surely there are sunny summer days ahead for you.
Patty - Thinking about you. Hope you are feeling better every day!
Lynne, Lynn, Dee,Carol and Babs, MomATT, Jen and the rest of the gang - Waving hello!
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Kmm - sorry you have to join us, but a warm welcome to you. You will find lots of info, support and more knowledge than you will ever get from your docs. I'm almost 2 years 1/2 with MBC (dx stage V de novo) and staying stable with Letrozole. CT scans and bone scans are the preferred route for my Onc. Testing was more frequent in the beginning (every 3 months), now about every 4 -5 months. Onc would feel comfortable with every 6 months. Out of routine testing is done when new or recurring pain occurs. Rule of thumb is any new or recurring pain that lasts more than 2 - 3 weeks should be investigated. The one and only time I had a Pet scan is when I went for a second opinion shortly after dx. Feel free to ask any questions and keep us updated. Best wishes to you.
Texted Patty today and she replied saying she's still in the hospital. She has another fractured vertebrae that they will fix with a special needle and ablate (burn off) the tumor. She's fed up and it's hard on her family as well. Breaks my heart.
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Oh, no to Patty's news, Linda. I'm going to text her as well. How disheartening for her and her family, but praying the steps they're taking will be done well and ease her pain. Thanks for letting us know.
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