Bone Mets Thread
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Hi there! I am new here. Really struggling with my dx. I have a grade 3 tumour ER+PR+HER2+ that has metastasized to my spine. Small spot on L3 vertebrae. Just had my second infusion of Taxol/Perjeta/Herceptin on Thurs. since then my back pain has been unbearable! My breast tumor had disappeared or is nonpalpable. Really worried that my spinal mets are getting worse. Just looking for some encouragement similar storie etc. I see my oncologist this week to discuss this.
Sue
Thanks in advance
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Gracie, my jaw was hurting too, right there in the joint. First thought was bone met, second thought was necrosis. I saw the nurse at my oncology center and it's just TMJ, thank goodness. My acupuncturist went to work on it and it felt much better. It actually just felt better just knowing what it was. I hope that's all it is for you too.
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Sue -
If the treatment is working on the primary tumor, it's very very likely that the bone met will be healed in your next scan. You don't realize how much stress you are under during the first few months of treatment until it's past. The stress has it's own set of symptoms - jaw pain, back pain - that are stress not cancer. But you still need to address them ... yoga, exercise, body work, anti-depressants ... whatever you feel will help you regain some peace.
Since you presented with limited bone mets, odds are you will beat this. It won't be easy but you have an exceptionally good prognosis. So double down and get through these treatments. Take exceptionally good care of yourself and it should be okay. Your back pain will magically disappear once you see that bone met healed and primary tumor greatly diminished or even gone in the next scan.
>Z<
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FDA Approves Kisqali for Breast Cancer Subset
Kisqali (ribociclib), a CDK 4/6 inhibitor, gained approval from the Food and Drug Administration (FDA) for the frontline treatment of postmenopausal women with hormone-receptor (HR)–positive, HER2-negative advanced breast cancer.
- See more at: http://www.curetoday.com/articles/fda-approves-kis...Just wanted to pass this along.
Linda
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Sue,
I'm a newbie too and since I was given the same chemo drug combo, I just want to add that severe back pain can be caused by taxol. It is one of several severe side effects, my infusions of taxotere, later taxol were both stopped because I had all the severe SE's at once. Once I found another taxane drug that worked for me, I only have some mild bone/joint pain one day a week, sometimes in my left hip where my bone met is located and I've been assured that it is a common SE. It would seem unlikely that it is progression given the good response to the primary tumor. I would definitely discuss the pain with your onc though, so they can help
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babe, Really gorgeous pics, She looks so happy! Is the wedding in the states or will you travel? Z, our support and knowledge are unsurpassed. "Throw her back in the ring!" Hahaha...that cracked me up! Thanks for the link Linda. Added it to my reading list for later. Sorry to find you here Sue but you found the right place for support and info.. funny how scans results can make you suddenly realize you DO have real pain there, as in my rib, right along my bra line unfortunately.....
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Sue sorry you are here, but you are in good company that's for sure. Good luck to you.
Linda wow, that's a terrific breakthrough. Thank you so much for posting. Someone new on this thread was on this trial I believe. Dani has the CDK4/6 mutation, maybe we could add this as a side wish!
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hello everyone....I just realized that today it has been TWO YEARS since i received my stage IV DX....I honestly never thought i would be able to write those words....I'm just so thankful for everyone who helped save my life...wishing you all happy days and restful nights
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artist...how is your shoulder? Hope it's better.
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Thanks to all here. It has been very helpful to see all the positive attitudes. I was just diagnosed with Stage 4 after 20 years of being "cancer-free". The cancer metastatized to my chest wall and ribs. When I felt a lump on my chest last October the doctor ordered an x-ray which "did not show anything" (although months later the biopsy radiologist mentioned that he could "see something" there). The lump persisted and I asked for an MRI in February. A 3 cm tumor was found on my sternum and cancer cells lining ribs etc. on chest wall. So- biopsy, Petscan, and doctor visits: ER+, PR-, HER-. I am still angry at the doctor in October who didn't really concern himself with my previous history of breast cancer. My insurance won't pay for a 2nd opinion at a major cancer hospital (they are all "out of network"), so I am going to Dana Farber on my own dime this Friday. The local oncologist has recommended letrozole+Ibrance for the first line treatment. Another local doctor mentioned fulvestrant. So I am confused about what the first line treatment should be. When I get the 2nd opinion this Friday, I should have more information. My questions are: what is the most appropriate first line treatment for my type of cancer, and can Ibrance be added after you start? I understand that Ibrance takes 2-3 weeks to arrive, and I think I had better get started with something ASAP as it has been over a month since I was diagnosed. Your comments/suggestions needed!
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Polmonium: first line tx would be either one of the aromatase inhibitors such as femara, armidex, or aromasin alone or femara+ibrance. Fulvestrant (faslodex) with ibrance is frequently a second line tx although some MOs may use it first line.
My drs originally diagnosed my pleural effusion mets as COPD, so it took several months of me not responding to treatment before they figured it out. I was 11 years out from my original BC diagnosis so it never occurred to me either. Glad you have found us although we sympathize for why you are here. Don't worry there is still time.
Hello to all the newbies.
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Thank you for the response. Do you think it matters if Ibrance is added a few weeks later? As far as which is the "right" first line treatment- it really is a crapshoot, isn't it?
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suejk and Polemonium, welcome to Breastcancer.org! We're sorry you have to be here, but glad you found us! We know that you'll get tons of support and understanding here, so please stay connected, and keep us posted on how you're doing!
Best wishes,
The Mods
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Thank you for responding and welcoming me. Your words are encouraging. I'm trying to find the strength to stay positive and get myself out of bed after this last infusion
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Nan!!! Congratulations on Two Years.
Sue - You are doing great if you get out of bed. Everything else is gravy.
Polemonium - Can you fill out your treatment and diagnostic history in your profile and make it public in the settings area (menu to the left)? MBC is all about context so we need that information to answer your question.
Normally you do letrozol plus Ibrance first and you save the fulvestrant as a second line treatment. ER+ cancer has estrogen receptors on the cell surface that bind with estrogen and initiate the growth cycle of the cell. Letrozol blocks the signal from the pituitary gland to convert androgen to estrogen, lowering your estrogen levels to zero. No estrogen, no growth, at least for a while. Fulvestrant/faslodex binds with receptor itself and destroys the receptor. It seems that you get more time out of the protocols if you do letrozol first, wait till it fails, then switch to fulvestrant.
Either letrozol or fulvestrant are combined with ibrance.
I don't know your age, but I have seen 70+ women going on fulvestrant first. I am 50 and in forced menopause so I haven't paid attention to why. There may be a reason for fulvestrant first if you are older, but that is a question to ask. Your local onc is on the right track, but you need to understand why you are being put on fulvestrant + ibrance first. The first line treatment for ER+ MBC is pretty well defined but it is a good idea to have second opinion relationship with Dana Farber going forward because things get complicated indeed ...
It's amazing given all the breast cancer awareness efforts how many people took forever to get diagnosed properly. I am one of those as well. My PCP group completely failed me. And so we are here.
>Z<
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And don't forget D, young woman, goes to top notch BS in NYC in top Center, goes to top notch Onco at top Center, says her shoulder hurts, Hx of BC, on tamoxifen, and they shrug it as maybe she picked up something....really??? Again, I (at the time didn't even understand metastasis at all, but just had some idea that people have recurrence), I found a Orthopedist for her to see, he wasn't told about her Hx, and he alsmost fainted when he saw the xray! Oh don't worry, when she called Onco the same day, they arranged for her to have Pet/CT and so it started again. HOW HOW is it possible??
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zarivko no way are you 50??
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just a quick question ibrance is not yet available in Australia except as a trial (think I am right with that) Is Femara as effective just on its own. I have now gone to stable healing with tumour markers normal on it for 14 weeks. Just one more question I was told that extensive bone mets and small bone mets are no different as far as outcome yet I see where someone was told that small mets may be cured and extensive not?? A little confused
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We're in the "doctors don't have a clue" club. My PCP refused to even give me a scan - for months! My husband and I eventually camped out in her office...with me in a wheelchair because of the intractable back pain, hip pain and rib pain, and dh finally said, "We're not leaving until you set up a scan."
I wonder how much all my tumors grew and spread during that time?
STAGE IV right from the gate.
Infuriating.
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Hello everyone! OK got my scan today my pet scan here's what I know. It says " significant improvement in osseous metastatic disease with most active lesion now seen at the T2 level. There is also partial resolution of hyper metabolism with in the right sub pectoral node. No new abnormality is detected. I think that means I'm stable ! My tumor markers were up just a little tiny bit so that kind of bothers me but the pet scan evidently didn't show anything else. I wondered though this scan said something I had never seen before and it said "there is physiologic uptake in the abdominal and pelvic viscera, uptake is seen with within both kidneys with accumulation in the bladder, there are scattered areas of bowel activity likely within the physiologic range. no additional Hypermetabolic mas or adenopathy is seen. " So i'm assuming that that is all normal?
It all sounds good to me and he said he doesn't have to see me for three months and he'll do more scans then.
I do have to go see a dentist about my jaw and he did remove me from the Xgeva. He is a little concerned about that, but said if I can't take the Xgeva that I can take something in pill form? So does that mean the pills don't cause osteonecrosis?
Also I have to go see a cardiologist about my heart rate. He says it is abnormally low for someone of my age and weight, but that it may just be due to medication which I'm hoping is the case
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Gracie- your scan was a good one-stable is wonderful!!!!
Congrats!!!!!!
Babs
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Yippe Gracie that's just wonderful🌞
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Lita you mine kind of girl!! I remember when you posted this in the beginning, like we are in an asylum!!
Gracie sweetie, so happy for you!
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Lita, My shoulder is the same and fairly painful when I lean back into pillows or something. I don't think it helps that i now commute a half hour a day on a busy mountain highway. I tend to grip the wheel and tense up. i hope I just did something with all the moving to the new house and it will resolve itself with my spring break coming up. Pain pills help a lot.
Awesome for stable Gracie!
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Delvzy, to answer your question, yes Femara can do a very good job of controlling the cancer. Women have been stable for several years on that alone. So you have time to wait for Ibrance to be approved. Hope this puts your mind at ease a bit. I can't answer the question about bone mets since I have lung mets only. I just hang around this board sometimes watching my friends from the Ibrance thread.
Faith (in the future)
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Gracie - for the record, that is not stable it is IMPROVED. As in Boo YEAH IMPROVED.
Physiological activity refers to the normal function of an organism, so I am going to go out on a limb and guess that you can replace the physiologic on that report with "normal". Obviously the onc wasn't worried since he did not mention it.
Denosumab (xgeva, prolia) can cause onj whatever the form, so I am guessing he has some other approach to bone strengthening in mind. We're all curious what exactly he suggests.
Delvzy - there is a good argument for holding ibrance for a second line treatment with faslodex. IOW you do letrozol till it fails, THEN you do Ibrance and some other kind of hormonal therapy. Letrozol can hold cancer back for quite some time at which point you may have new options that none of us have access to right now.
Artist - I think we're all in pain after moving. It can be hard to remember those days when pain was "normal" and not a sign of impending doom. But normal pain is still a piece of the puzzle.
>Z<
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Thanks girls for answering my questions
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Thanks Z for the help with all that...I'm medical terms impaired unfortunately! But still, improved is exciting 😊 I see my dentist this morning at 7:30 so will see what he says. Thanks again 😊
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Gracie - congrats on improved/stable results!
Delvzy - I would add something to your question. When one is oligometastatic, meaning 1 to 5 small bone mets and possibly less, a curative approach can be envisaged.
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ok I am relieved. The dentist says no evidence at all of onj. Muscle spasms, which are related to tmj. Whew..
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