Bone Mets Thread
Comments
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Lyricw9 - This is a terrible journey we are on, mainly because of the unknown (if I didn't understand 'fear of the unknown' before, MBC sure changed that!!). I too have no one close by that really 'gets' what I am going through and am hoping to connect with someone one of these days, though my family and friends are super great support thank goodness! For awhile in spring I wrestled with being sad and anxious so my GP prescribed 10 mg of Citalopran for anxiety, non addictive med and it seems to have helped, not sure if time to adjust helped or the meds but I am way less anxious and back to my usual self!
PHOTOGIRL-6 I agree that the Letrozole makes your bones achy, as I took it for 7 months before adding the Ibrance, so I am positive the achiness culprit is the Letrozole not the Ibrance
Lynne - best of luck on the next round of chemo, I pray it is the one that works for you with minimal SE - or better yet, none!!
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Two years ago I found out my cancer had metasticized to my bones. Two years! It’s flown by! Now I’m working on those other 18 years I want!!!!
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Congratulations Gracie, you are so amazing! You have had so much loss but here you are helping people. Two years is awesome.
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Hi Leapfrog! I appear to be in somewhat the same boat as you are at the moment. My tumor markers have been going up since January '18 and between last month's test and this month's test, they have jumped 38 points to 193. I'm sure by next month, I'll be back to where I started at 255 in March of 2016. I had been on Letrozole/Ibrance for almost 18 months and am now on Everolimus/Exemestane (I call it the Greek Tragedy of cancer treatments!). Last month, my MO was seriously considering removing me from the E/E treatment and moving me to Xeloda, pending the outcome of my PET scan. After the results were reported, she called and said it looked better than she anticipated it was going to so she was leaving me on the E/E for a couple of months. However, with the jump in tumor markers, I know she's going to reconsider that. I see her today. I find it interesting that the scan looked better than anticipated but the tumor markers keep going up.
I also find it interesting that they will not start you on the Everolimus until they see progression. I went on both at the same time, just like Letrozole/Ibrance. Different approaches in different places, I guess.
Keep the faith...I haven't given up yet so please keep on fighting. It gets tiring as we all know. I told my MO that when I feel sorry for myself, I come on this site and read what some of the ladies here are going through, which in most cases is WAY worse than what I am dealing with, and that usually cures me!
Cindy
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Hi all. I haven't been on any of these threads forever and have missed reading about how everyone is doing, and seeing the amazing support you all give each other. I don't have a local support group either; really don't know anyone going through what I am, so I need to stay closer to you all.
Just read the last few pages. Animal Crackers - I'll jump to some of the other topics and try to catch up on what is happening with you, but wanted to let you know that I also had two (I'll spell this wrong) kyphoplasties in my lower spine, and I had 3 weeks of radiation - inpatient - when I was first diagnosed. The radiation completely helped, as did the surgeries. Hoping they do the same for you, and that the second clinical trial works. I also have liver mets - two small tumors, but they have been stable for the last almost 6 years as well.
Lyricw9- I agree with a few of the other ladies. I tried several AI's and they all made me feel like I was 100 years old and had arthritis in every bone in my body. I was stiff and achy all over. I am HER2+ so my oncologist finally took me off of everything except Herceptin, and that is the treatment I've had for the last five years - Herceptin only. I still feel stiff sometimes, but never the pain that I used to. I am on a very, very low dose of methodone daily which helps. I also try to stay active (which I know is very difficult when it hurts to move) but I have found that the more active I am, the less stiff I feel. I hope you will keep posting and reading others advice and encouragement. It will be 6 years in Sept since I was diagnosed and after the first horrible year I have led a fairly normal life, except for the doctor visits and the scans, which I absolutely hate because I feel like the other shoe is going to drop (of course, at some point it will)
Hugs to everyone else!
Andrea
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I was on Exemestane etcstarted in May and it caused inflammation of the lung and gave me pneumonia which just about killed me. I am now on a chemo tablet, Letrozole Femera madd me feel 100 years old in the mi
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Thank you all who responded to my cry for help about the white count. Lynne good luck with your new treatment. I have live mets and no pain. Had some pain on Taxol after treatment...turned out it was making my liver tumors grow. Yes next up is the biopsy of the liver on monday and then treatment Nr. 2 of EC. What drugs are the CMF.
Hugs to all,
Raven
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Well, I got a good 20 months out of Taxol but now I have several new bone lesions and some of the old lesions are smoldering again (I have loads of them all over). I knew something was up because I had to dig up my dusty bottle of vicoprofen last week when bone pain escalated out of nowhere, and also my TM's have been inching up steadily for the past 6 months. My quarterly CT's have looked stable, but my gut said otherwise so I begged for a PET to compare with my last PET from 12/29/16-- and that told the rest of the story.
Now I am faced with a decision. My onc has given me the choice of Abemaciclib + Arimidex OR Halaven (eribulin) and I need to decide pretty quickly because the insurance approvals will probably eat up some time.
Any thoughts?
She first mentioned Halaven, but golly I would like a break from the chemo chair for a bit, and also Abemaciclib doesn't cause neuropathy like Halaven can and it might be wise to give my hands and feet a break to recover after 20 months of being hit with Taxol weekly. I am SO TIRED of icing my hands and feet every Monday and it would be kinda cool to feel my fingertips again.
Is the side effect profile typically better on either of these?
Yuck, y'all. Just YUCK. Progression is a beast and it's always scary no matter how many times you've been smacked by it. I'm trying not to be sad but this is a sorry sticky jackass of a disease. You can try to put a saddle on a wild donkey but it's for sure gonna fly off after awhile. This will be my 6th line of treatment in 8 years. I am thankful that we at least have a lineup of jackass saddles, though.
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Lyric, I'm sorry you feel so alone. I have chronic life long depression. I know what it's like to have to try and try until you end up with the right cocktail. In the meantime suffering. I'm on 3 different antidepressants and an anti anxiety. Works for 13 years so far. It took a long time to get there. What I've learned is do whatever it takes to not be depressed. Life is not long enough to waste it on depression.
I think I'm learning that with this CA, people think I have either a year or years left to live. They ask me. I've realized that it's up to how well the meds work . It's all about the meds. There's some choices out there and it may take some time to find the right cocktail, but it will come.
As for medical marijuana, I've never been pro pot. But now I see it as something that may work outstanding for us, and actually be "organic"! it would be nice to take something that was not some chemical in the world of chemicals we live in.
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I was looking forward to being 2 years NED in December, but just found out that I have cancer in my spine. I have three beautiful young children (3,6,& 9) and an amazing supportive husband. So far the MRI only showed cancer on my 9th vertebrae. I have a pet scan on Tuesday, and I'm hoping that nothing else is found. I'm afraid that I wont see my children grow up. I feel like I did everything that I should have, but the cancer is back. I'm only 34 years old, and have so much more I want to do in my life. My oncologist said he will put me on Faslodex and Ibrance after my biopsy next week. Has anyone had experience with this drug? It's fairly new I believe. How long can someone live with bone mets? My kids would have such a hard life without me around to help guide them through life.
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Hi ShannaM, I'm just a few months in to having mets, but there are many folks here who are years into this. They will be along here to help you understand. There are lots of treatments available including medicines like Ibrance and also radiation especially for one met or a small number if your doctor says its appropriate for you.
I've just started my sixth cycle of Ibrance and I take letrozole with mine. A cycle is 21 days of Ibrance and then 7 days off. Some patients have a different schedule but the 21/7 is typical. It's manageable and I've had some significant improvement to some of my bone mets already.
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lulubee: I do not have a good feeling for you going on Abemaciclib/Arimidex. I assume that you had progression on Letrozole already as well as on Everolimus. Letrozole is basically the same as Arimidex, both are aromatase inhibitors. And if I have it in mind correctly, some wrote lately (maybe cure-ious?) that after progression on mTOR inhibitors (Everolimus), the CDK4/6 inhibitors (Abemaciclib) usually do not work any more as well.
And another question: why did you stay on Ibrance for such as short time only? Was there a specific reason to move on, e.g. side effects?
Basically, these are the questions that you should ask your MO for his opinion.
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Netta, that is interesting info about the mTOR and CDK4/6 inhibitors. I will definitely ask about that.
The reason for the AI now is that they improve the effectiveness of Abemaciclib. I have also read several women on the boards over the years say that it sometimes proved effective to cycle back to hormone therapies after biologics or chemos, because the cancer can become re-sensitized to hormone therapy over time. You may recall that the late "longtermsurvivor" Stephanie Sugars pulsed anti-hormonals between other treatment categories over a span of 25 years.
To answer your question about my two week stent with Ibrance... that's quite a story and it's not short, so bear with me.
Leading up to my fleeting Ibrance moment, I had been NEAD on Xeloda for almost three years. I had been put on Xeloda at a time when lobular mets had very recently invaded my common bile duct and glued it shut, triggering pancreatitis and four consecutive liver failures. I came within a couple of hours of dying from the fourth liver crash and sepsis in December 2013, had emergency surgery that saved my life, and then Xeloda gave me a miraculous turnaround. It was quite a rollercoaster there for a while.
Three years later in the autumn of 2016, Xeloda began to fail and my TM's began to rise-- right around the time I had to get new insurance because of new laws in the US. Because of some horrid, wicked insurance screw-ups, I had a discontinuation of care for a couple of weeks when I could not get any of the primary care doctors on my new plan to take me into their practice so I could get the required referral to continue seeing my oncologist. It was a scary time and very frustrating to have a senseless gap in treatment when we knew Xeloda had failed and the cancer was running totally unchecked. The minute we got insurance sorted out, my onc got me on Ibrance pronto-- but it was too late. In the gap time, lobular BC mets had gone totally crazy in my pericardial sac, flattening one side of my heart and partially collapsing my lungs. I wound up in ER having emergency heart surgery where a cardio surgeon drained almost a liter of malignant fluid off my heart. Once again, I had come within a couple of hours of dying from MBC in a completely bizarre way.
At that point, my onc said with mets lurking in my heart we did not have time to wait around for Ibrance to kick in and I would have to be wheeled straight from the cardio floor to the chemo lab to start Taxol. I was in bed on oxygen with damaged lungs for the first couple of months I was on Taxol, and after that I had a year of horrible, tail-kicking recovery from the heart and lung damage. But Taxol did the trick and I'm still here. So far, my heart is fine. My lungs still have some areas of atelectasis (collapse) that may never recover but I breathe okay.
So, bottom line, none of that was because Ibrance failed me in any way.
I am still trying to decide whether to go with Abemaciclib or Halaven. It's a tough choice. No matter which one I choose, I will likely do the other one later, so it's really a matter of timing I suppose. I would just like a break from the chemo chair for a while but as my late grandmother used to famously say, "Well, honey, there are people in hell wantin' ice water." LOL
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Muddlingthrough,
Thank you for the reply, I am still just in shock that it has come back after everything I had previously done. Now I question everything that I have done in the past for my previous cancer and wonder if it was worth it, or if I could have saved my breast since it came back anyways. These choices are so difficult. I am happy to hear that the medication works well. We are planning on radiation as far as I know.
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Shanna, I understand why you are in shock. The news you received could not have been met with anything but shock. You shouldn't look back and question what you have done. You have made all the right choices. You are not responsible for your current situation. If you have only one site of metastatic disease, you are probably considered to be oligometastatic and many physicians treat that with an aim for a cure. That usually includes removing the primary tumor in the breast as well as local treatment such as radiation to the bone met. You would also continue to thave treatment such as Faslodex and Ibrance to help prevent further spread. So, it sounds like you have done everything right!There are people on these boards who have had their solitary mets zapped and remained NED for many years. Exbrnxgrl immediately comes to my mind since she used to be a frequent contributor to this thread. She still posts and is my personal poster child for oligometastatic bc. She has remained NED for many years, still works in the teaching job she loves, and lives life to the fullest. I was on the Faslodex/Ibrance combo for two years, and I found it pretty easy to tolerate. I do recommend that you visit the Faslodex 2014 thread as well as the Ibrance thread. The Faslodex thread has very useful information at the beginning of the thread. I am sure people there will welcome you to the Fanny Pack. If you follow the recommendations, those Fas injections will be a piece of cake. Don't be afraid to speak up if the nurses don't warm those syringes ahead of time or try to inject too quickly. You will feel pains in your but if the nurses don't follow the recommendations. Here are the links for you.
Ibrance thread:
https://community.breastcancer.org/forum/8/topics/...
Faslodex thread:
https://community.breastcancer.org/forum/8/topics/...
Hugs and prayers from, Lynne
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Hi Shanna,
I’m so sorry you are here I want to tell you life isn’t over with bone mets!! I’m 41 and was Dx’ed on my 40th bday with extensive bone mets. I have been in Ibrance and letrozole (and lupron and xygeva) and I am stable. The bone mets have cleared and I’m doing great! In fact, I kicked ass in a boxing class yesterday. I go to Zumba regularly and go out salsa dancing with my buddies till 2am sometimes still!
Your body may take a little time to adjust to the meds (or not!) and your mind has to do the processing it needs to do to get through the shock.
The route I took which worked for me was immediately found a therapist (a psychologist) who specializes in oncology support, Valium helped (and still does) with anxiety and panic, crying as much as I need to and never holding it back, telling those that I wanted to be in my support group team of people, and lots of meditation and massage and acupuncture for the side effects. Also planning trips to beautiful places helped a lot (my happy place is in the Caribbean Sea).
You are going to live a long time with this disease - it is not going to take you away quickly. Lots of deep breathes and fresh air.
I am here for you if you want to use me as a resource or support in any way. Feel free to PM me if you’d like to.
Big huge hugs!!!! We are all here for you. Brenda0 -
Shanna, I spent almost 18 months on Ibrance/Letrozole, along with Zometa infusions and found I tolerated it very well. I'm retired so no work to go to but I was still playing golf, traveling, and maintaining my house as usual. And when I was diagnosed Stage IV in March, 2016, after being cancer free for almost 10 years, I also had a pleural effusion (3 liters of fluid in my right lung from a tumor there) and had a chest tube in from March, '16 until late September, '16. I have extensive bone mets, i.e. spine in multiple places, ribs, skull, one femur, some more I can't remember, and lesions in my liver, as well as the one in the lung. My bone mets are stable now. I moved on from Ibrance/Letrozole to Affinitor (Everolimus)/Exemestane for 5 months and am now going to Xeloda. I will say I felt much better being on the Ibrance/Letrozole than the E/E. Everyone reacts to the treatment protocols differently but please don't be afraid of the Ibrance/Letrozole. You want something to kick those evil cancer cells butts and Ibrance/Letrozole will help do that! Best of luck!
Cindy
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Lulubee: you have really had quite a journey! I keep my fingers crossed that you will make a good decision proving effective and well bearable.
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welp! History just happened in my family. I don’t know if this is weird to share here or not but I just smoked cannabis with my mother. It was my mother’s first time and she’s 73 years old and really wanted to try it. It was pretty cute and sweet. My 75 year old dad (who did not smoke and has never even tried tobacco) and aunt were with us too and cheered and giggled. My mom didn’t feel anything (typical of first time) but we have Valium in case it’s too intense. After she took just one toke I was like, “that’s enough!” I don’t know how she’ll react and want her to take it easy. Whew - what funny things having cancer brings about! Never thought this would be happening!0
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Did she vape or was it a joint?
I vape ocassionally for breakout pain, mostly use cbd's
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Thank you ladies for your overwhelming sense of support and amazing information. I truly appreciate the advice and caring messages. This road seems difficult, but knowing that there are so many women out there kicking butt with the same ailments makes me feel like I can do this. I have always met things head on. I served in the United States Marine Corps, deployed to Iraq, and I can tell you that this is much more frightening. I will have to find the courage, and I think the information that you gave me will help in the process. I guess it's not about dying with cancer, more or less learning to live with it.
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Lita - we used a vape pen! I smoke a little before bed to help me fall asleep and relax me.
Shanna - wow thank you for your service!!! I have mad respect for women in the marine corps!! And you’ve got this - just remember to be incredibly kind and gentle and loving towards yourself. This isn’t your fault and you did nothing wrong to bring this on. Give yourself as much time as you need to process this emotionally and spiritually. I also sought out spiritual advisement which helped me greatly. Some people see religious priests or rabbis or something of the like, I counseled with a Native American shaman woman and that also helped a lot. Do whatever your heart needs!
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Indigenous shaman!
Sounds good to me. Going to Sedona in October. May look one up.
If anyone has any referrals for the Flagstaff, AZ area, let me know!
L
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Hi Shanna M - you’ve gotten great advice and I have no doubt that an ex-Marine won’t have to dig too far to uncover that courage of yours but I just wanted to also add a little hope.
15 years after my stage 2 BC, we found a spot on my rib bone during my annual breast MRI back in january this year. Once it was biopsied and my pet scans were back, it was determined that the only visible met I have.in the one in the rib.
We did 16 sessions of radiation (I had to ask for more they offered 5 to begins with) and the then I started on Ibrance pills, faslodex injections, and herceptin infusions (I am her2+).
I just a Pet scan in july and it was completely clean (outside of radiation changes in the bone) and my tumor markers are normal. We never know how long this NED status will last but my doc is confident enough to shift my scan schedule back to every 6 months, rather than ever 3.
You could be telling someone this same story in just a few short months! Hang in there’s. We are here for you!
🤗Lauren
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Question for those with extensive bone mets, particularly in the lumbar and sitting bones...
Have you discovered a chair that you have found to be tolerably comfortable for more than a few minutes? Especially when your bones are hurting?
If so, can you describe it?
My current progression is pretty widespread and I am in a washout period before I can start the next treatment. Meanwhile let me just say: OWW DANG whattt the HECK! I cannot get comfortable enough to read or work anywhere in my house! My two armchairs where I usually work aren't doing it for me now—both curve/slouch my lower back so that there's too much pressure/weight on the lumbar vertebrae. I realized today that I am going to have to explore getting myself a more doable chair, or else throw in the towel on getting any work done OR any rest throughout the day!
Hoping someone has figured this one out because this is becoming a real problem for me!
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I have a questioregarding tumor markers. I’m living with MBCand have been doing very well now for3 years. Diagnosis was 6/2015. My tumor count went from3000+ down to 460. Last lab noted an increase to 840. I work FT and have not been in pain until recently in the upper back. I need some info on these tumor markers. Does it really mean much
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Constantlyamazed—For some patients, TM numbers are fairly reliable and for others they are not. Mine have been spot-on for 8 years. Ranges are individual as well. I've known women who were living pretty well with markers in the thousands. Me, on the other hand—I've come close to dying twice and both times my TM scores were less than 250. So we are all different. Tumors in different patients can shed these marker proteins into the blood in highly individual ways.
My onc pays a lot of attention to new pain, and I have learned to as well. New bone pain should always be scanned. I hope you've just overworked and a little rest will do the trick! But I would ask for a scan if it persists.
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lulube, I had that issue almost 6 years ago. I was a first grade teacher and I couldn't sit anywhere at school, I finally bought my own soft comfy chair and wheeled it everywhere, classroom, library and even to meetings. I wish I would have gotten it checked out because months later, my femur spontaneously broke while I was out shopping with my daughter. I don't want to scare you but I'd get it checked. I thought it was the middle of my lower back that hurt but tuned out femur was full of cancer. The only relief prior to the break I got was from laying down and that was just a little better than trying to sit.I hope this info is helpful. Best to you - take care
Suzy
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Cross post...
I'm starting to freak out. My shoulder is hurting again, though not as severely!as it was, my lower back pain has gotten worse, now my hips, left leg and lower abdomen hurt. I'm due to have a PET on Thursday, will get results on Tuesday, but I'm terrified that I've had widespread progression...
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lulu - I haven't found anywhere I can sit comfortably, except if I put a particular cushion in my recliner, then I can kind of recline. I can only get any real relief from lying down.
Stllivin - wow! That’s scary. I’m having a PET Thursday. Hopefully we can get a handle on whatever is going on.
Praying for us all...
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