Bone Mets Thread
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I'm sorry, I'm here again..........for my friend (there's no way she'll come here)..........
She was dx with bone mets 10 days ago............has had a long (8 hour) appointment at the hospital.....they are assuming that her BC is exactly the same as last time (no biopsy), 11 years ago.......and are treating her with Letrozole, Alendronic Acid and radiotherapy. She also needs 2 hip replacements, due to the fragile nature of her hips.......no treatment for her spine as it's in a difficult place......she is scheduled for an MRI, & Ct scan next week, plus an infusion (?) to lower her blood calcium levels........which they're worried about.
I find it so strange.........I was dx with grade 3 whereas she was grade 1.........I had nodes........she didn't......
Thoughts about her treatment please............... I'm worried about her
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ladies,
I have a question that might sound strange, but I have only just thought of it today. Does anyone dieof just bone mets or does this only occur with organ involvement? Sorry if this is morbid, but I honestly never thought to ask my mo.
Caryn
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Happygran - the infusion you are referring to is probably a monthly treatment (at least at the beginning of the treatment plan) which strengthens the bones and reduces bone mets pain. It also reduces calcium levels in the blood.Caryn - I asked the question. My onc replied there has to be organ involvement.
Linda
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Happygran - I was stage I, no node involvement, not even a need for chemo, and here I am at Stage IV. It does happen. And there are people who were diagnosed at Stage III and never go to Stage IV. Just one of those things.
The infusion is probably Zometa or similar (hope I got that right) and lowers blood calcium and strengthens bones as Linda says. Can cause flu-like symptoms for a few days after the infusion (achy bones too for a few days). Her treatments sounds almost identical to mine. I had a rod put in my femur because it was in crap shape so they didn't want it to break. That and hormone therapy and radiation for pain. I had radiation to my hip, spine, and rib. Makes you really tired for a while and more sore in the very short-term, but then provides pain relief and (hopefully) kills off the cancer.
The treatment for Stage IV is very different that for the earlier stages. Not surpised at no biopsy; they'll do one if it's relatively easy, but don't if it's not. They may try to grab one when she has her hip replacements. From what I understand, it's hard to get a sample if you have the kind of mets that "dissolve" the bone (that's not a very scientific description).
Hope that helps a bit.
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Interesting question Caryn, I never thought to ask, so thanks Linda for asking. So if I can somehow keep the beast out of organs you can stay stable. Listen to me, I'm not even stable yet, but I'm hopeful. Did your onco say anything about lymph nodes Linda?
Happygran, sorry about your friend. If she did decide to come here, there are a great bunch here who bounce things both good & bad off each other & try to keep ourselves "sane"
Cheers to all! Dee
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Good question Dee - no she didn't mention anything about lymph nodes. Now you got me thinking...Linda
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Well I have to get a MRI Monday...OC worried about my right hip and femur ....I have been telling him of the intense pain i've been having for the last couple weeks....he's concerned...so he wants to stay on top of it...I think it's because of the very cold weather we are having...but hey...what do I know... this disease can turn and in a minute..
ok..well I got something from a friend ...a very concerned friend...it's like black tar...B.C.G.G. that she spent $65 on it's in a little container Ingredients are Chlorphylin...sanguinaria canadensis...impations palida...hydrastis canadersis....ferula galbaniflua...zinc...you take pea size doses twice daily ...swallow....with food...it's something that she and others have seen results with some cancer folks...debating on taking it...it's starring me in the face...going to take to my OC and consult...she and her friends just were so strong on getting this to me...undecided... ????
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hi Freebird,
I googled bc gig and couldn't find much, though I didn't spend too much time on it. Definitely good to check it out with your onc and I don't mean to be a Debby Downer, but I'm sceptic all of of magic bullets or "all natural" do no harm cures that are not proven. Still, worth checking out,even if only as a supplement.
Caryn
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hey caryn my mo said the same. Won't die of bone mets Til organ involvement - unless that proverbial bus gets me
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yes, must always remember to look both ways for that darned bus!
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lol
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happygran, your friend's course of treatment sounds very typical -- an aromatese inhibitor, a bone strengthener, and the RT, although I don't think Alendronic Acid (Fosamax) is the first choice bone strengthener for a lot of metastatic bc patients in the US, but I'm not sure why. (Maybe just that there are newer ones?) The one thing I would suggest, since Fosamax is a bisphosphonate, is that she get any dental work she needs done before she starts it due to the risk of osteonecrosis of the jaw.
I am a little surprised that her onc didn't at least discuss a bone biopsy to ascertain if her bc is the same as it was 11 years ago. When I was re-dx'd, my local onc said he didn't see a need to put me through a bone biopsy, but my UCLA onc (who is the more thorough doc) said it was very important to be sure my hormone status hadn't changed, and that based on an MRI, they would look for the easiest place to access. As it turned out, I ended up with an emergency hip replacement before the MRI or biopsy could be done, and they got the biopsy from that bone. But I would not be comfortable with assuming anything about bc, because if they're wrong, and her bc has become hormone negative or Her2+, the treatment she's getting will not be sufficient or effective, and she'll be wasting time not being on the right meds. Of course, time will tell if what she's on is working, but I'm not sure I would be as comfortable as her docs are with such a major assumption, and I don't think you are either from the way you bolded "assuming."
Gosh, Caryn, I don't think bone mets alone is terminal! If anyone finds out differently, please don't tell me! Seriously. I want to continue to live in denial as long as possible!
Carla, I'm glad you're getting an MRI if you are in intense pain. Let us know what time, so that we can all send you positive vibes, and as a friend of mine says, good ju-ju! And I'm not sure about ingesting that stuff your friend sent you. I tried to go their website, and it's not available, which is a red flag to me because it makes me wonder if the FDA possibly shut the website down for cancer curing claims I see elsewhere. Just my initial, skeptical reaction, although I know nothing about BCGG. Deanna
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Ninetwelve,
Do you get to see your mo soon after your pet scan? Hope so, waiting can be so hard. Did you have PET scan on your initial dx? Sorry, you probably mentioned it somewhere but I can't remember. 2 months seems kind of short for a follow-up, but I hope the scans shows Tamo is kicking cancer butt for you!
Hmm, given the choice I think I would rather wonder/worry about sex with the ex than what happens at work when you are away. Is your job pretty stressful? Sorry about your best work friend moving on.
Hope you those needles did their job and you have a nice relaxing weekend.
Jo
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Freebird ....Carla, I agree with Caryn. Any extra additive "therapeutics" need to be checked out with your medical oncologist. The main reason is that if a patient is being treated with chemotherapy the pharmacology of that drug has action timed to interupt the life cycle of different cancer cells. It is very involved when a cancer drug is administered as a single agent or incombination with other agents that are responding to cancer cell "markers" such as those that may be positive for estrogen or Her2...etc. All of our cancer treatments are systematically evaluated as to the best combination and timed for maximum efficacy. I hope that this helps Carla. Those other products may or may not help but they may definitely negate the effects of our prescribed oncology drugs. Peg
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I just wrote down the question about bone mets & lymph node involvement for my onco to answer when I go in December. Gotta run, I've got to get to bed, I'm doing an antique show tomorrow, got to get some beauty sleep! (alot of beauty sleep) LOL! Dee
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I wanted to let you know that I have recovered from the effects of radiation to the spine. I lost weight due to it effecting my esophagus although now beginning to pick up a few pounds. I went to see a naturalpathic doctor who specializes in oncology. The doctors there suggested I take marshmellow root, which coats your esophagus/throat. It worked. In a few days I was able to swallow easier and in a week or so eat with out spasm and pain.
I went to see a bone doctor and he gave me a shot in the hip/groin area that has relieved me of leg pain. I am able to walk without hip or leg pain. I did read that the bone Xera (sp) once a month shot can cause the femur to break. The article said the first signs of a hip or femur break is pain in the groin. Last week when they wanted to give me the shot I said no more. I do not see an improvement in the bones since beginning it. I still have a bit rib aches. I do not think it has helped as to why I quit. My doctor won't be happy about it...
My last CT scans showed that my organ tumors are shrinking. She said CT scans are not so good at dx bone tumors. I have a MRI brain scan a week from Monday. That is scary.
I'm in Texas right now visiting family. My older brother died a week ago in a car crash. He was healthy. You just don't know when it is your time to go. I was dx about six months ago with six months to live. I am doing quite well. Really no pain, and if you didn't know, you wouldn't guess I have cancer. Life is uncertain for everyone. Although I have wide spread cancer, I'm not dying. I'm living every day to the fullest.
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Hindsfeet, so sorry to hear of the loss of your brother, my condolences go out to you and your family. Having a family member taken away so suddenly is devastating. You are right, life is uncertain for everyone!
I'm glad to hear you are recovering from the effects of the radiation. I start at the end of this week possibly and having extreme anxiety. They are targeting 4 areas, humerus, sternum, L5 and rib. I think Deanna had mentioned that you had quite a bit of radiation at once and to ask you how it affected you. How many treatments did you have and what type of radiation did they use? Any info would be helpful to me. They keep telling me I won't feel that bad, they're alternating between the humerus and sternum one day and then L5 and rib the next over a period of 2 weeks so a total of 5 rads to each area. I'm receiving stereotactic radiation therapy to the humerus and sternum and cyberknife to L5 and rib.
You're positive attitude is amazing and very inspiring. Happy to hear you're living everyday to the fullest! May you be blessed with continued healing.
Hugs, Annie
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hindsfeet,
Good to hear from you and please accept my condolences on your brother's passing. Life is, indeed, uncertain and comes with no guarantees.
About femur fractures and Xgeva... The reported incidents have generally been in patients with long term usage and is still a low incident se. The drug is a bone strengthener and thought to protect against progression of bone mets. That being said, I know you have mentioned that you are sensitive to drug se's. I was on a similar drug for two years and had no adverse reactions but my mo took me off of it because risks do go up over time. She doesn't think it is a critically important tool in fighting bone mets, so although I was a bit leery about stopping it, I understand her position now. I do, however, have the two years worth of protection it conferred.
Glad you're doing well and as you can see, giving timeframes for our life expectancies doesn't always mean much. Take care.
Caryn
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Hindsfeet, I am so sorry for your loss. It is especially hard to suddenly lose a brother or sister. My condolences to your family. I am glad that you are feeling better and any radiation side effects have lessened. It is especially positive news regarding the "shrinkage of organ tumors". You are in my thoughts and prayers for more good news following your upcoming MRI. Blessings, Peg
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Very sorry for your loss, Hindsfeet. Glad your tumours are shrinking and that you have some good news.
Sending hugs,
Terre
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Hindsfeet, my condolences on losing your brother. That must be so hard. But it sounds like you are in a good place now. Love hearing you are living each day to the fullest! Keeping fingers crossed for your MRI results.
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Hindsfeet, so very sorry for your loss . How correct you are - we never know.
Never heard of marshmallow root. Can you get it at the health food store? What dose did you take? Very interesting.
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hinds feet - sorry to hear of the loss if your brother. It is a reminder to those of us worrying ourself day and night about have 1-2 years to live but realistically none of us are promisedf tomorrow. Praying for your family. Must be esp hard in your patents as well.
Annie / hoping your are keeping yourself busy not worrying about radiation. I have had it a couple times ( in different areas ) The first time was a walk in the park , unfortunately can't say the same thing about the 2nd time since it's got part of my esophagus and belly. However just kept telling my self on radiation there is a definate end date and day by day is dr it there. You can do it to. Hopefully you have the walk in the park.
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I am sorry for your loss of your brother, hindsfeet. I agree that none of us are promised tomorrow. This metastasis made me acutely aware. And still I waste time.
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Sorry I'm back again..........I can't understand why they haven't done a biopsy to see if she's still horm +.............she had a meeting with the orthopedic surgeon today............as she basically has no bone in her hip...........he won't touch her...........said there are only 2 people in the UK who may be able to help.....so she's having to travel 100 miles (not much for you in the US) for treatment....she also had an MRI & CT scan today..........
Her GP doctor didn't refer her soon enough.........they should have picked up on her previous medical history.........but didn't.........and she was dx with arthritis.........and was in a lot of pain for over 12 months.....It's the fault of the GP..................
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happygran, perhaps your friend's situation won't seem as bad or difficult to those docs who are capable of working with more complex cases. And I think she should be grateful that a lesser experienced ortho surgeon didn't want to make her his first attempt at whatever surgery she needs.
And yes, I hear you about her GP. Sadly, I don't think that's all that unusual. Far too many docs miss earlier dx because they assume arthritis, for example, based on negative x-rays, and never go as far as ordering a scan. It's even worse when it's early stage (or could have been early stage) bc and it's missed until it's no longer early stage.
Hindsfeet, I, too, send condolences for the sudden loss of your brother. I'm so sorry, but I'm very happy to know you're busy and doing so much better than at least one of your doc's originally suggested!
Carla, let us know how your MRI went today. Anyone else facing scans or other tests this week? (Sorry, but it's difficult to go back through the last few pages once you've started typing.)
I hope everyone has enough energy this week to prepare for and enjoy the holiday! Hugs & prayers to all for good news, continued healing and no progression!!!
Deanna
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I am so sorry to hear that your mom is still struggling. Focus your energies on what can be done now and put blaming the GP on the back burner ( not easy to do, I know). Although it may be a hassle to travel, it will, hopefully, be worth it. If it's any comfort, many women in the States travel quite some distance to be treated at major cancer centers. Wishing your mom the best.
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Well, I guess I should quit lurking and say hello. I got confirmation last week that I have bone mets, only 2 1/2 years out from original diagnosis. I only have one tumor in my shoulder, about 2cm. My onc says it is unusual to only have one bone met, so maybe this is a good thing. I've had a bone scan, CT and bone biopsy.
He started me with an Xgeva shot today, and I meet with the radiologist next week to hopefully get this pain under control. We are still waiting on the hormone receptors from the bone biopsy I had last week, so for now he said to stop Tamoxifen. Once the receptors are back he will start me on an AI.
It's been a rough road to come to grips with this diagnosis, and I know each of know exactly how I feel. Reading your posts each day help tremendously, and I am grateful that all of you are willing to share your stories.
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Hi, Dianne! I'm glad you've stopped lurking, but darn, I wish you didn't have reason to be here! I'm so sorry about your dx, but it does sound like a comparitively "good" scenario, and hopefully something they can get control of very quickly.
I have to say I'm a bit shocked that you've been re-dx'd so soon after finishing what looks like pretty aggressive tx, and while still on Tamoxifen. I'm sure it's something you never anticipated in a million years, especially having been node negative and doing a bilateral mx. I'm so sorry...
(((Hugs))), and do keep us posted on the results of your bone biopsy and tx plan. Deanna
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hi Dianne. I see you are just days out from dx. It does get easier. I promise. The initial schock of the IV dx can be overwhelming and all consuming. Time helps. Once you get a definate game plan you will have something to work towards. Glad you reached out and said hello. Stick around. Best thing about BCO is you csn slways find someone who has been there done that and lived to tell us what to expect from each treatment. We are also here to listin to whining or anything else. Some times it's pretty hard to discuss something so serious with all family and friends because it upsets them so. Nice to "meet" you.
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