Bone Mets Thread
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Rachel1, I have mets in my chin and in my skull. This is how my metastasized breast cancer was discovered. Sudden numb chin/lip sent me to my primary care physician one day, who immediately scheduled me for a CAT Scan of my skull. Results were immediate--mets in skull, some pressing on a nerve at my chin and lip. I then had a full Bone Scan, which detected mets all over. After about 8 months or so of Arimidex and about 4 months or so of Xgeva, the tingling numbness in my lip is gone, the tingling in my chin has decreased by about 90 or 95% or more, and the numbness in my chin is virtually gone. I do believe my hearing has been compromised, and highly suspect the mets in my skull. I have done nothing beyond my treatments, Arimidex and Xgeva. My opthomologist also wants me to return earlier than usual for a follow-up exam, and asked to have my scan results sent to him. I will find out about those results at my appointment in a few weeks. I'll keep you posted on this, and would be very appreciative if you would please keep me posted on your similar situation, as well.
~ Valerie
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LindaE and Amy, thank you for your warm and kind words. A bit update. I have been basically the same both symptom wise and in clinical condition after almost 15 months treatment with Letrozole and Zometa. Last CT and bone scan (in January) reported no soft tissue involvement but bone disease had no change or minimal improvement. No healing mentioned, nor progression. Do not need to take pain medication, minimum treatment side effects, but always feel discomfort around the rib cage area. After dropping 65%, my TM has been the same since last July (still quite much higher than the normal volume). Oddly, my last blood work (done last Tuesday for my appointment with my onc tomorrow) did not include CA 15-3. Instead, my onc ordered CA 19-9 which was normal. Anyone has had CA 19-9 done? I have to guess if it was not a mistake, my onc is monitoring my liver. I have this impression that we bone metsters (20-25% of the entire BC mets population) will likely have soft tissue involvement within 5 years after mets diagnosis. If we can cross the threshold of 5 years without soft tissue involvement, we will be the 10 year or longer survivors hopeful. I am thinking what we patients can do for this goal. There is an ongoing clinical trial at MD Anderson exactly on this subject, bone mets controlling. Their goal is to achieve medium 20 month progression free as the medium. Their means is using injection radiation, AI, and Xgeva (radiation injection one dose a month, total 6 doses). Obviously, the idea is that AI and bone supporting drug are not potent enough to hold the mets for as long as 20 months as the medium progression free time for us bone only mets patients. They are trying to directly kill some cancer (AI controls the environment, does not directly kill the cancer). I am intensely interested in tis trial, will ask my onc about it tomorrow. I might not be on boards very often (I am planning to spend less time on my cancer concerns) , but will update when there is something interesting in my experience. Wish everyone the best!
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Xavo, will be very interested to know what you find out about the MD Anderson trial. My wife has some soft tissue involvement, so very scared and went to know about all possible options.
Dee, best of luck for your upcoming bone scan and hoping everything is still stable.
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Xavo - thank you for your update. Stable results is music to my ears! I too will be very interested about the trial. I never had the CA 19-9 although my MO monitors my liver every month. BTW I love the flowers you post on the D and D thread! Enjoy your time off the boards and thanks for letting us know. Best wishes to you!
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The liver mets thread isn't as active as this one. Boo. Xavo- I am discouraged to hear about that study, I will likely not be one of the long term survivors, I think my cancer is too aggressive for that. The biopsy is Thursday morning.
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Just came back from onc visit and got a little time to do some follow up.
Christina, please do not feel discouraged by the study I reported. Here is the link (Letmywifelive, it is also especially for you to study): https://clinicaltrials.gov/ct2/show/study/NCT02366130#contacts/ . Check the qualifications. I think it said bone dominate disease and allows one (or two?) organ or soft tissue involvement. However, your onc's opinion is the most important in terms of making treatment plans. As for how long each one of us can survive, no one knows. Here we come back to the dialogue between the two separate categories, the statistics as the collective and the specifics as the individual. They cover different truths. The individual is not immediately, directly, and ultimately ruled by the collective laws. Quite opposite, the collective actually follows the individual and reflects the sum of the individuals. Right in the individual lies our hope. Each of us strive for the best outcome with our own given. As long as we are determined, the results are always better in every individual case. Just look at Nancy. She started with mets in three locations, lungs, liver, and bone (which suggested that her cancer be quite aggressive to begin with). In a year, brain was added. But she climbed high mountains, completed half marathon, made more than 6 and a half year, almost 7 years. There are so many examples there to prove this. So, just be fearlessly determined and fearlessly strive for the best outcome. You will have it! (On a more specific note, have you ever considered using your disability benefits to reduce some stress?)
As for my onc's opinion of the MD Anderson bone Mets control study, he was very relaxed. He believes the radium injection drug, Ra 223, will be likely proved by FDA for treating BC in 2 or 3 years. Ra 223 is a new drug proved by FDA in 2013 for treating prostate cancer as an option for those who have become resistant to hormonal treatments. My onc would not want to use it as an addition to other treatments anyway. He belongs to the school that wants the tool box to be full of tools. Let alone he saw no need to change anything with my current treatment since there is little problem. I was even planning to fly to Huston monthly to complete the trial before I saw my onc. My onc's relaxant manner and view made it impossible to be considered. Oh, I not only was discouraged for the trial idea, I got a reduction of Zometa taking! From now on, I will have Zometa infusion every three months instead of every month. So, did not get more, but less!
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Hello everyone. I haven't posted anything lately due to being very busy. But researching my tail off. I just caught up. I am so new to all this. So much information to take in. I was hoping if someone could help me with the Frankensinse oil. Does anybody know if it's ok to take with treatments. I saw where it kills breast cancer cells better than chemo. Just was hoping to get opinions on it. Thanks so much.
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My first appt since learning I have mets was today. Good appt, have to get the ovaries out before anything else. Then I have several options:
-any AI, alone or with Ibrance
OR
-falsodex, alone or with something else I forget
Plus zometa is an option along with either of the above
Any thoughts/opinions or experiences in terms of effectiveness or side effects? I have just one spot in my ribs, lungs are clear but still have PET scheduled to check for other organ involvement. I have a little kid so need to be here for years, but also need to keep up with him through treatment!
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Robbin-M
I am a big fan of complementary medicine, under the supervision of a medical doctor. IMO the complementary medicine is as mature, effective and potentially nasty as the standard of care. It's not something to toy with. Here's a website of doctors who have attended dr weil's institute in arizona. My complementary doctor works inside the box, outside the box and way outside the box. In fact, he goes farther outside the box than I am interested in going. The essential oils do not come up.
The guy who seems most involved in essential oil treatment for cancer is Gary Young. Gary seems to have retreated from the FDA's reach to practice in Ecuador. Here is a positive experience from someone who went there. But I don'ts see any science behind it. And it's not cheap.
I use frankincense when I pray with my wonderful Aunt. It is a powerful spiritual tool. Keep a bottle by my bedside when I need to connect with her. I would not confuse it with medicine.
Indenial -
I had pretty much the same options when diagnosed. I chose letrozol plus Ibrance. I've stuck with it because I am doing well on it. But I am not HER2+, among other things. Having multiple options was one of the first things that calmed me down. It kinda doesn't mater what you choose because there's something else if it does not work. How great. Welcome to the path back to normalcy. I have a 10 year old and a 12 year old. Failure is not an option.
Hang in there.
>Z<
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Hi Lovelife49... I don't know why my oncologist thinks Xgeva is more important than anything else, including Herceptin. I will find out, though... this week. I have an appointment with her Thursday and have a million questions about Xgeva that I should have asked a long time ago. I'm sorry you are struggling through it... the shots literally have no effect on me, unlike the Herceptin, which makes me achy and tired. Anyway, I will let you know what I find out.
Hi to everyone else... I think this is the most active thread on BCO!
XO
Andrea
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Hi ladies,
I hope everyone here is doing well. It hurts my heart to see all these new women joining. But this website and ladies are so informative. I can't thank you all enough, Your info and input has gotten me through the last 6 months.
I have bone mets to the spine (a lot of them) ribs and collar bone. I stopped taxol 2 weeks ago still on H&P, zomata and my first lupron shot. But in the last week every place I have mets is achy and sore especially my back. Any ideas as to what it could be or do I need to call my onc? Scans in March showed shrinkage. I haven't done anything out of the norm.
Thank
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Hi Bosco... I also had mets to the spine ( a TON of them), ribs, collarbone, pelvis. I also had Taxol, have continued with Herceptin for over three years, and had Lupron shots for a while, and Xgeva every 6 weeks. It took me a long, long time to get over the pain caused by the mets, even though they eventually totally healed/shrunk/filled in.... I still have lower back pain once in a while, although at this point am considered NED. The Herceptin does make my joints and muscles achy.... so perhaps it's a combination of that and not yet healed bones/compressions/mets? I would definitely check with your oncologist for peace of mind, but I think that the pain from the mets can linger, and can be a side effect of other treatments. (maybe even the Lupron shot? I seem to have blocked out the SE's of that, besides immediate menopause.) Hang in there... in my experience, it does get better, slowly but steadily.
XO
Andrea
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Good morning friends, I've been waiting for my foot to get better before writing, but it's not all better. My oncologist examined my foot and didn't think it was planter fasciitis and she didn't think it was engendered by Arimidex, either. Clearly, it's something. After wearing only supportive and well-padded walking shoes for many days, and still limping to stay off my right foot, I felt so much pain I broke down and took an Advil. I don't know why I fear Advil, but I do, and try not to take it. But I did, and yes, the pain was cut in half, if not even more, and I've even been able to put on flats with a dress. I can now walk, carefully and slowly so I don't put pressure on that foot, and seems to get better each day, but after sitting for a long time, etc. the sharp pain returns. I wonder if I should take another Advil--maybe it might get even better? I've been weary recently, and haven't been able to keep up with all of you, but will try to sit down and catch up with all of you, dear ones. Sending my love.
Valerie
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Valerie - Advil is an anti-inflammatory and if you combine it with Tylenol, I'll bet you'll be close to pain free. QOL is so important, pain can take away a big part of it. I suspect you have a lot of inflammation in your foot and if you take Advil every 4 to 6 hours for a few days, you might just get rid of the pain. Did you have your foot x-rayed for stress fracture? When I was on Tamoxifen, I had a very nasty pain in my foot which made walking very painful. Got it x-rayed twice because stress fractures take time to show up on imaging. All was normal. Ended up having a cortisone shot in the foot and oh what a relief. I'm sure it was a Tamox SE.
Bosco, shrinkage or healing bones can be very painful. I agree with Andrea, check it out with MO.
Andrea - can't wait to hear your MO's input on Xgeva. Mine also told me on my last visit how important Xgeva was for me and that it was an excellent drug. Didn't think to ask more questions unfortunately. And congrats on NED!
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My word, take the advil! There's no reason to hobble around in pain if advil relieves it.
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Valerie, I totally agree with Linda's suggestion that the Advil is addressing inflammation and is probably much needed right now, as well as her advice that combining an Advil with a Tylenol sometimes offers amazing pain relief. If it is inflammation, you might also try a few natural things to hasten the improvement. I'm thinking of things like a bit of magnesium (as a supplement) or foods high in magnesium (spinach, almonds, avocados), or even an OTC water pill or RX for fluid retention. Irwin Naturals makes an excellent supplement called Inflamma-Less that I've been using for several weeks after it was recommended to me by someone on BCO. You can get it on Amazon. It's been a great addition to my supplement regimen, especially for joint discomfort.
Andrea, I am thrilled to learn that you're NED! That's wonderful, wonderful news!
Wendy ~ Love the racing photos! That looks like so much fun! I know other bc survivors who are into Dragon Boat racing, but what I've never been able to reconcile in my own mind is how the rowing action might not be too stressing on our weakened spines and/or ribs?
Xavo, good to see you! And I like the way your onc thinks! When it comes to outcomes, I strongly believe in the mind-body connection -- that is our thoughts, feelings, beliefs, and attitudes positively or negatively affect our biological functioning. I think it, as well as an onc who is an mbc-dedicated expert (which unfortunately too many general oncs are not), are key factors in how well we do.
Hi's and hugs to everyone else! Deanna
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Zarovka,
Thank you so much for that information. I learned about the oil through the nine part series of The world without cancer that was just released lately. Hugs.
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Hi all
I continue to read daily keeping up with all of the wonderful women here. Christine you are in my thoughts and I hope your treatment team is able address your progression successfully. I hope you always feel at home in this thread.
Valarie I have miserable ankle pain off and on. An x day was clear. I use an elastic brace I bought at the grocery store and after 3 days pain is gone. Then it comes back and back in the brace. Good luck finding what works for you.
Wendy I love the Dragon boat picture. So proud of you and your team!
Bosco I do try to tell myself pain is healing. But I see my MO every 6 weeks and he always reviews pain carefully. My hip has been painfull for a while new theory is scaring from radiation. Hmm I did radiation to stop the pain.
Welcome to so many new people. Sorry you find yourself here but this is a wonderful place for support.
Peace to all
Mary
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Deanna I cleared it with my trial nurse and oncologist before starting the rowing. Her main concern was that I get rid of my horses and not lift to heavy weights at the gym. Building muscle she said is a great thing. I have noticed my stamina isn't where I want it. This particular race was our first and was only 200 meters the next will be five hundred so I need to up my training a tad. I need to have some activity that is outdoors and together with others and this was my best options in the city.
My next scan is Friday then we will know a little more if the trial drugs are working or not. Refusing to think of that now I'm trying desperately to avoid scanxiety this go around.
I wanted to through something else out there last night I watched a very interesting interview on YouTube. In case anyone is interested the show is called Real Vancouver and the interview was with a fellow named Chris Curtis he was diagnosed with stage four cancer and cured himself. I know....however I believe there is more to us that just the physical. I wish all you dear ladies a pain free happy day😊
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Wendy, I'm curious why your onc said you had to get rid of your horses? Did you?
Amy
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Momal,
"PurpleMin sorry about the recurrence. Onco just asked my daughter to apply for Immunotherapy, could you let us know a bit about it. They said it could take weeks, but they wanted to start the process in case the tx she is on will not be satisfactory. (she has been on almost everything already). Why would say it had not worked for you, it's supposed to be so potent."
I was on a very promising trial, an anti PD1 and a CTL-4 checkpoint inhibitor. My doctor was very optimistic. I had all four of the infusions of both drugs, over four months. I had nearly no side effects and felt great during that time. But, scans after the four infusions showed quite a bit of progression so, it didn't work. I am now back on chemotherapy. There is still some hope that the immunotherapy treatment I had will make the chemo more effective.
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Hi ladies
Still here. Reading on the liver mets boards, there are lots of women who are still working and whose liver tumors did shrink w chemo, so I'll choose to believe I'll be one of them. I am not ready to give up just yet despite the pain and discomfort.
I have my liver biopsy tomorrow and I have no idea how to prepare! No one has called me. Off to look on the internet.
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Christina, great spirit! You will definitely be one who has great results with treatments because you are young. Wish you a smooth liver biopsy tomorrow and an effective treatment plan soon in place.
Amy, horse riding increase the chance for spinal compressions for spine affected metsters. So does running (and very long distance walking). The main thing is to avoid putting weighted impacts on the affected bones repeatedly.
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My MO wants me to get a consult with a rad oncologist about my femur because I am pretty active (biking mostly these days) and he says the lesion is near the outside of the bone? No fractures but he's worried and thinks maybe radiation would be good in that spot. Anyone have femur spots radiated?
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Yes, I had a 2 cm spot on my upper femur radiated almost 5 years ago and it is necrotic. Let me know if you have any questions.
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exbrngrl, I have all the questions! I know nothing. Tell me about it, like the smallest stupid details? Did you have to go every day for a while? Did it hurt? Were you tired? Could you drive yourself? What has happened to that spot since? How do you follow up (scans?) anything! Thank you!
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Hi all!
Really need all of you today. My bone scan results came back with progression. DH is very upset, I'm upset, but kind of suspected it, with the headache with phantom smoke and my lower back & hip pain. Unfortunately I don't see the MO from Hell until the 30th to find out the next plan, although she talked about A/A combo. I would have 2 months on it before our trip to see how I do. I'm also going to push for rads to my skull & spine. Below is the gist of the radiology report, I would love all your thoughts on this. thanks, dee
"evidence of progression. Foci of uptake in the left orbit, sternum and pelvis appear increased in intensity. Focal foci of increased tracer uptake in the thoracolumbar spine also appear increased in intensity to previous. No new foci."
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Dee,
Stupid cancer....I'm so sorry to hear about this report. It's crazy how we know when things are going on. You do have treatment options available! The radiation idea seems like a good place to start the discussion. If your Dr. has the test results is there any way to do a conference call before the 30th to discuss things?
If they start you on a new protocol that has more SEs would you be more interested in enjoying your trip first? They said there was no new foci, just some uptake on the ones that are already there...the good news is there isn't something new!
Upset husbands are tough...hope you can hug each other through this bump in the road. Will be thinking of you!
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Dee, I just pm'd you. Can you ask for an MRI or PET to further diagnose what is going on? At least a CT head, neck chest, abdomen, pelvis to further clarify and measure if necessary. The more information you have the better, so you can decide what treatment is best for you. Sorry your MO is so difficult. Hug to you
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Damn, Dee! I'm so sorry. But the fact that you have no new foci is positive. I think it would be helpful if your onc can go over the actual imaging with you, so that you will have a better idea of just how much increase in uptake you actually have. Sometimes radiologists can be overly aggressive in how they word things, and It may not be quite as dramatic as it sounds or you're imagining. If your current regimen isn't working at this point, hopefully the next one will kick a**. Are you still on Anastrozole? If so -- and since Ibrance has just been approved in Canada -- I'm wondering if Faslodex+Ibrance will now be your onc's first choice, rather than AA. It's what I'm on and thankfully not difficult combo after a few rounds to get accustomed to it. Also when an A/I stops working, it's often best to switch to something that works with an entirely different mechanism, and I would definitely ask about this. (((Hugs))) Deanna
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