Bone Mets Thread
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Jenny - this is the best thread for bone mets. I would certainly not go back to the beginning. Just dive in today, introduce yourself and tell us what is going on, as you have. You'll be with us for years ...
Your mental state is the foundation of your healing. Many people fight depression especially when recently diagnosed. It's not the drugs, it's the situation which just really hard. There are a number of anti-depressants that work well in the cancer setting. Many people take them and I strongly recommend considering an anti-depressant. Please make a priority of asking your doctor about this.
Welcome,
>Z<
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I have had 3 injections of Faslodex since 12/1. (Booster in 12/15) and 12/1 and 12/29. The last time the girl was great. Slow injection.......then she put pressure on injection site and massaged in a circle for 30 seconds or so to make sure drug would not form a ball. She said to do the same at home if I noticed anything forming.
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Sienna, Z, really?!
What a fantastic choice for New Years!!
Enjoy every moment!!
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Yep. Giving the old Chianti and Fresh Pasta Protocol a whirl while I wait to go back to Japan. It's a kind of hedge. If neither works, I'll die happy with no regrets.
>Z<
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Happy New Year ladies 🎉🥂
Pat that was beautifully written so very caring and accurate. Jenny as you can see this is a good place these woman have pulled me out of black holes so many tims I can't tell you. We are stronger together. I wish for us all a cure and if we can't have that then at least a pain free happy NED diagnosis😉.
Z cheers
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I already posted the following in the Ibrance thread, but it as well belongs here, in case that people are different:
Hallo everybody! After reading this blog for some weeks now, I just created myself an account in order to also write postings.
I have been diagnosed with de novo stage IV end of August 2017, when having an MRI due to thorax back pain. I can be grateful the the radiologist did not only check the disks but also saw the lesions in my spine and the enlarged axillary node and set off the whole diagnosis tooling.
The de novo stage IV diagnosis (various bone mets in my whole spine and my sculp bone, but no current fracture risk) was a great shock to me, because I was only 40 (now 41) at this point of time, having kids that just turned 5 and 7 years. I can live with the knowledge of not becoming 100, but it is hard for me that I might not be able to guide my kids until becoming 18, high school graduation, college, marriage... .
Since my breast cancer is highly estrogen positive, I have been put on Leuproreline (similar to Gosereline, because I am pre-menopausal), Letrozole and Ibrance. For my bone mets, I receive Zometa 4-weekly. It was a bit of a scare that the CA15-3 (and CEA) marker went up from 38 at diagnosis to 150 after 2 months of treatment. However, CT and MRI scans of liver/lungs were clear. Therefore, my MO and I tend to hope that we saw a tumour flare, especially since the volume of the breast lump decreased by about 40% during the first 2 months of treatment and initial sclerosing of the bone mets could be observed. I will have the tumour markers done again on thursday, please keep your fingers crossed, that we will see a decrease now to prove the tumour flare theory.
I am trying to stay optimistic and tell myself that my goal is to see my kids turn 18 and get their high school diploma. I am doing back strengthening workouts to support my spine and even got myself an indoor rower, however, my old binge-eating-disorder has overwhelmed me again after diagnosis, which had me put on 25 pounds in 4 months, which certainly does not help my back. I am currently checking for getting psychological support for this issue.
What is really driving me crazy is the fact, that I feel pain every day in a different part of my body. One day, my breast feels like being stabbed with a knitting needle or it is itching (I did not get surgery since being de novo stage IV). Then my axillary nodes hurt, the next day, I have pain in different parts of my back or in my ribs or in the area between my right ribs and my bellybutton (liver area). And lately, I am having a weird sensation in the skin of my head. I have no idea, whether the pain results from the disease or the medication, but I fear for the worst every time again. I do not yet know how to calm down on this.
Otherwise, I am ok with the treatment. I feel fatique from Ibrance starting mid week 2 until end week 3, but my WBC are quite ok at 125 mg dose. Unfortunately, I had 2 bacterial infections in my nose during my current 4th cycle, which needed 2 different antibiotics (the 2nd infection was resistant against the 1st antibiotic). It is not easy to stay away from germs with 2 small kids, and I also do not want to be stuck at home not being able to see my friends or go shopping. And of course, I do hate the hormone depletion side effects, especially the sweating and the sleeping problems. However, I guess that is still much better than any other treatments, right? And I hope that my body will eventually get used to the induced menopause at some point of time.
Did anyone of you younger folks get oophorectomy to get off the Leuproreline/Gosereline? Does it make sense? How bad does one feel after the surgery? How long does it take to recover?
Sorry for the looong post. By the way, in case you wonder about my weird English: this is not my mother tongue, since I am from Germany. However, this forum is so much more active than any German breast cancer forum and the experience with Ibrance is much greater in the US, since Ibrance has been on the German market only since 11/2016. So I can get so much more support and information from you guys.
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Wow ladies, I am just now back on the site after posting the other night and I thank you all so very much for your replies and taking the time to make me feel "at home" so to speak. I will just jump in now and we can all go together from here!
I start a new drug called Verzenio on Thursday along with my next Faslodex shot.
I'm looking forward to getting to know y'all! Jenny
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Hello, I have posted these similar questions in the "not stage IV but have question" thread and got some helpful suggestions. Thought I may get more suggestions in this thread.
Has anyone had PET scan that was negative but bone scan and MRI showed lesion? If so, was a bone biopsy done to confirm if it is a met? Did the biopsy show met?
I had these three tests done due to hip pain. Bone scan and MRI show lesion PET/CT negative. Onc is looking into bone biopsy but said it may not be conclusive if result is normal, because it may be difficult to get the sample since CT did not detect lesion. Seems that only positive result will be conclusive. has anyone been in similar situation ? Thank you
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Hi Jenny. I didn't get a chance to welcome you. This is a great group of ladies. Many of us would love to follow your experience with Verzenio (abemaciclib). There is an thread on abemaciclib. If you have any tips or info about your treatment experiences please post. It is an exciting new treatment.
All the best.
Mary
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Crystal15, I had a bone scan and CT scan done. Bone scan came back negative but CT scan showed 4 small ( <1cm) lesions. Bone biopsy on L1 came back positive for breast cancer. Onc said lesions too small to show on bone scan.
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Hello ladies,
I have been reading and learning about you all since my diagnosis in October of bone mets to femur, and a few spine mets. I had surgery in October to have a rod placed in my femur and followed by a week of radiation. I then started chemo in November of THP and have do far only had 2 of 6 treatments. I’ve worked since starting chemo and have really been challenged; since my job is both mentally and physically challenging and not a place to share you are going through treatments. I work long hours 9 to 10 hours. I am also a single parent of 2 children (elementary age) and must work to keep up my health insurance...I wanted to say Hello to you all and thank you for your opinions and shared experiences...they have truly helped me have faith that I can get through this. I will have a new PET scan after 3rd chemo treatment. Thanks again
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Hi Netta, a lot of the pains and tingling sensation match what I and others on letrozole and Ibrance experience. There’s a Facebook group for ibrance too and many women note having rib pain even if that is not the site of any mets. The scalp pain (almost like someone is tugging a lot of my hair very hair) has continued for me the entire time (since fall 2016). I blame the letrozole and Lupron for my aching joints and foot pain. I think swimming and exercise in general to help manage the daily pain. I too have a young child (I’m 43 and have an 8 yr old). My doc told me likely 10+ years. In responding well to treatment and hope you do too. The tumor flare response is real. My TMs went up for nearly 6 months before plummeting down. Scans are the more important diagnostic.0
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Hi Netta,
Welcome to the group it's a bit of a shocker isn't it , I was also diagnosed de novo stage four and I totally know how you must be feeling. You have found a great site here these ladies have picked me up so many times I can't even count. So much knowledge that my oncologist could take lessons.
It sounds like you have a very good treatment plan as to the pain do they have medical MJ there ? My husband is German his family is from Rheine we lived in Berlin for many years so I know you have great quality of food there and that's huge. You will see your children graduate and grandchildren believe in that . When I was first diagnosed I was so afraid but now it's been almost three years and I'm doing okay☺️. Some of my friends have reached NED and are also doing well.
We are all here for each other big hug from Canada
Wendy
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Hi Netta,
Welcome
I, too, was diagnosed de novo Stage IV. It is indeed a shock, especially since I had all my mammograms on time. I have a rare form that is "occult, amorphic," hidden and without shape. Mine was also dx'd because of back pain. I have tumors all up and down my spine, in other bone groups, in abdominal organs, and my brain.
It sucks, but we are all getting thru this. This site makes us stronger and gives us hope. It has made all the difference for me as I have been on a bit of an emotional roller coaster with progressions, etc.
To everyone else: I just got the PET report back from my MO, and the mets in my lower spine have gotten worse (tell me something I don't already know - OF COURSE they've gotten worse). RO is out of town, but MO is going to contact him and see if we can do anymore rads. I already had rads last April, so I don't know yet. I'm having lots of numbness in the buttock and saddle area, and I've lost some bowel control, too. Hopefully, the RO can do something. If not, I'm stuck wearing Depends for the rest of my life.
L
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Thanks for the friendly welcome and all the kind words!
Does anyone have experience with headaches/deaf feeling of the scalp caused by calotte mets? My physiotherapist thinks that it might be caused be changing pressures within the head due to the lesions.
I have always been a headache/migraine person but now experience this pain every day. It is well manageable, I can even avoid to take ibuprofen most days to spare my liver at bit, but it is nevertheless annoying me.
It is different from bone met pain itself (although I am not sure, if this bone met pain is not pain caused from the Zometa treatment rather than the mets).
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Hello Netta - We all go through the thing of wondering whether pain is advancing cancer or mets. I've been going through that myself worrying terribly about pain in my abdomen which has since resolved and was almost certainly gas?!?
I have a friend who had a lot of pain and assumed that her bone mets were advancing and then found out, Oh! What Joy! she had some kind of kidney infection. That is better, and treatable. But still it needs to be said that we get happy about weird things here in the Stage IV forum.
The stress alone can cause all the symptoms you mention. One thing to try is simple relaxation and meditation exercises, possibly with instruction but the folks on these threads are always ready to point you to their favorite youtube videos and podcasts.
We each have within immediate reach resources to reduce stress and get emotional support. We are here for you 100% but you need some in the flesh one on one support. Therapist, yoga class, spiritual advisor. Nothing really replaces that when you carry the weight of MBC around all day.
I am on Lupron for ovarian suppression. I haven't had my ovaries removed. Part of it is pure denial. Part of me thinks this is going to be over at some point and I can have estrogen again. However, at some point, estrogen suppression is not going to work and I am not sure I will deprive my whole body of something it needs. So I get my shots every three months ... and put the decision off.
Spicedlife - I created a thread for Verzenio. I hope you check in and tell us how you do. Huge promise in this drug but not many are on it due the way the prescribing framework is presented ... we're very interested in your experience and I created the thread to capture that conversation.
Crystal. Bone biopsies are not conclusive, period, but it is still worth getting one if they are not in some hard to reach place. The cancer is going to be tricky to treat if you don't know, for example, its ERPR and HER2 status. PET/CT's are going to miss bone mets if they are not active. It doesn't mean much to me that your PET/CT is negative. I am inclined to believe the MRI/Bone scan but I would also get a biopsy if the docs determine it is feasible.
>Z<
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Netta, about the ovaries, my MO told me he prefers to control my estrogen medically through the Lupron. I've always wondered if that is because I carry a bit too much weight....as fat creates estrogen too. I haven't asked him yet as the every 3 month Lupron shot isn't terrible. I do wonder about getting this for another 10 years though.
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@Jen and zarovka: Thank for your comments on ovarian supression.
As far as I understood, the Lupron and the Trenantone (that is what I get) make the ovaries do not produce estrogen. The Femara takes care of the elsewise produced estrogen, e.g. from fat tissue. Please correct me, if I am wrong. I am quite overweight, so I should definitely stick to the ovarial suppression, if your theory is right.
I was rather worried that the release profile of the Trenantone might not be so perfect at the end of the 12-week period, because I feel like getting my menstruation since about 10 days (I will get my next shot tomorrow, currently lower belly pain and funny sensations in my breasts like something is going on there as per normal cycle). Additionally, I am - as you say - concerned about taking the medication from 10 years or more. It appears that my liver does not like all the medication too much, because I have liver (capsule) pain that comes and goes. However, I did not think about possibly not needing the shots any more, when it comes to a progression/resistance. I thought, I will be on the ovarian suppression forever. Another think to discuss with the MO...
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grrifff and zarovka, thank you for sharing your experience and offeringsuggestions. Very helpful.
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Dear Swess, no, it’s not wrong to want to transition to another job or even stop working (not sure if you have disability available where you work?). We are all dealing with a lot, both mentally and physically. Some of us would rather work (or have to work) to keep life as normal as possible. Others (like me) have decided to go on long term disability and do other things and enjoy life until I can’t anymore. I struggled with this decision, but decided that it’s okay to make the choice to stop working. I hope you are able to find the perfect answer for your situation and wellbeing
Best wishes.
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Hi Jenny,
I am very interested to see how you do on the Faslodex / Verzenio treatment combo. I am currently on just Faslodex, but am going to ask my onc about adding Verzenio. I believe these new drugs are going to lead to a cure. I am forever an optimist, but really do see incredible progress and promise in the CAR-T cell treatments that are new to the market (not sure if Verzenio is one of them?). Anyway, I’ll watch for updates and hope you do really well on this combo.
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Hi all, Two things I wanted to mention. One, I was on Faslodax alone for 3 1/2 years, before Ibrance came out. Now, I am on Ibrance and Letrozole for a little over2 years, and stable. That's 5 1/2 years. I always wonder if jumping into Ibrance immediately is a good idea, or if you should keep it in your pocket until you have progession? My goal is to live as long as possible, with as little side effects as possible. I have ruled out chemo, so I look at it as I am buying time until more new drugs are developed. I don't want to burn through them, only to run out of options too soon. I finally realized that this is a marathon, for me, not a sprint. Anyway, just a thought.
Hugs and prayers everyone,
Claudia
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Lita, I am sorry to hear about the mets increase in your lower spine. Just wanted to let you know that I had radiation to my lower spine and at the completion of that course of treatment I asked the RO if I could have more radiation to the area if the need should arise. His answer to me was absolutely. So I have my fingers crossed that this may be an option for you.
Hugs,
No1-2NV a.k.a. No one to envy.
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Booboo, I will update on the verzenio thread that was just started. I am about to go do that because I get my first 28 day supply. a thread for Verzenio
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Motherofmany, Jenny, and Netta, welcome to this club no one wants to join, but within which you will find great support, comfort, and care. Netta, I had weird pains in met and non-met sites in my first couple of months of treatments. I was convinced the cancer was on fire and on the move. My first scans were mixed and showed some possible progression or flaring, but second scans were stable, and random pains have almost all resolved.
Crystal, my MO said PET will only pick up 1cm or greater sites, so that might be part of the discrepancy. The uncertainty can be panic-making, but trust your medical team and follow their lead.
Z - lifting a glass in spirit to your celebrating the new year in Italian style!
Lita, lifting prayers to you that rads are an option and will bring you relief.
Hoping 2018 brings you all miracles small and large.
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Sounds great, Spicedlife. I'll check that site...we're all hopingfor a good outcome for you.
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Jay, thanks for the welcome! Boo, I'm hoping for a good outcome too. My onc asked me why I read the info that came with the Verzenio package because that meant I would have the terrible side effects I read about. I thought that was mean. How was I to know not to read that stuff? That is the first time he has been like that and I think it is because he was sick and working with a fever. This may be no big deal to him but I am still in HIGH FREAK OUT mode.
Bigbhome, I am wondering why he didn't just start me on Faslodex and nothing else? I think I can handle the Faslodex pretty well so far.
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I am wondering what I should ask my onc so that I know the treatment is working? Should I get copies of my lab work each month? Get a scan every 3 months? My onc already knows that I have anxiety/depression diagnosis but I know that he has no clue about mental illness by the way he talks to me sometimes. I have made appointments with a counselor I used to see and am going back to psychiatrist to check my meds with this mets diagnosis. I was just going to my regular doctor for my psych meds for the last two years.
Thanks for all your help and the support. I am so glad I found this community and that we have each other. Jenny
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Spicedlife-keep reading any package inserts that you want to. Ask any question of your MO.Tell him that you want to be informed. He should be ordering scans regularly depending upon how your are feeling and how your tumor marker are doing(though, they can be tricky). Most people do not experience all of the possible side affects from a therapy, but you can arm yourself with remedies against the most common ones(Immodium for diarrhea, etc.) Also ask nursing staff questions. Does your clinic have a social worker? It's all about you and getting satisfactory info.
May the force be with you. Love MJH
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Jenny, absolutely ask and understand your lab results each month. Don't be afraid to ask questions. Informed patients do better than those who don't bother to understand their dx and tx. As far as scans go, some oncs automatically scan mbc patients every 3 mos. I am not personally comfortable with that and am glad neither of my oncs (UCLA and a local one) subscribe to that, but go more by changes in my TMs and how I'm feeling (pain level), which results in scans every 6 mos. if things are stable -- sooner if they're questionable. Don't be afraid to discuss this or anything else you need to understand with your onc. If he or she doesn't explain things so that you understand them, find an onc who will. You know your body better than anyone, which makes your input about tx decisions important.
Are your lab and scan results available on-line? Most are these days, and that's a great way to review and track them. Otherwise, simply ask for a copy of your lab results (or scan results if you've had scans) each time you see your onc. That way, you will have them to refer to when a question comes up or you learn something new and want to figure out if it relates to your situation. Deanna
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