Bone Mets Thread
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Wow. Thanks for the replies! Good feedback to think on. I guess I'll be wearing my leather seat britches and a helmet from now on. I'll ask MO when I see him just in case he has a serious valid point, and like BigPeaches commented, I may have to take a break while I start my "bone med".
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After reading hundreds of posts here, I'm putting some pieces together like the types of cancer and the drugs. It's like I've entered another world.
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gailmary, one of the things that concerned them on my PET scan was a single spot on my breast bone that lit up- I knew it was a large pimple on my breast bone that had been popped the day before!
Does everyone get a look at the scans after the doc does?
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Bigbhome (Claudia), glad you own horses. I used to just wear the helmet if I left the barn property but now it will be full time. No big deal. My leather seat britches have some wonderful staying power. So they will be on too. I can understand giving up a grueling show schedule. But I gave up showing many years ago. After 10 intense years, I opted to ride for fun without pressure.
From what I've gathered so far, my bone mets has probably been there for 3 or more years without anyone knowing. My mammos were always negative. It took going to a dermatologist to look at a growth on my thigh a few months ago that came back metastatic carcinoma re: breast.
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jen,
I don’t think that low calcium is ominous and it is definitely something that Xgeva can cause as it is recommended that you take Adcal with the Xgeva. I suppose it’s a question of how low is the level and what impact is it having on the rest of your electrolytes?
Vev
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Jen, my onc has me taking Calcium with vitamin d twice a day and tells me to double the dose on the day I get Xgeva. Her words “ Xgeva just sucks the calcium right out of you.”0
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I'm taking calcium w/vitamin D, two pills, twice a day, Onc said the same thing, Xgevia just sucks the calcium right from you.
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Muddling,
I have had 5 compression fractures. 4 have been repaired with Kyphoplasties (done outpatient by a specialized radiologist) . One is too high up to repair. It bothers me sometime, but I mostly just deal with the pain and take my 2 tylenol (I hate the opioid meds). I was in more pain with the other 4. Three were in the thoracic region, and one was in the lumbar region. I know my aunt had one they found on a lung xray. It wasn't causing her pain, so they left it alone. I took Zometa once a month for 2 years, and now get it once every three months (it's a bone builder too). I stopped taking Calcium w/D, because my calcium was too high. I still take a mutli vitamin daily.
Good luck!
Lynne
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Can I take Ibrance and Letrozole together?
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Hello again, ladies - just an update on my potential next treatment; it looks like I am a candidate for the clinical trial that my MO wants to me to try. The unfortunate thing is that it turns out that the point of the trial is to try adding an immunotherapy drug to a regular/single agent chemo treatment to see if it will result in better outcomes for Stage IV BC patients who are likely chemo resistant (as predicted by the presence of Circulating Tumor Cells (CTCs) in a sample of blood). To meet the threshold for the study, you needed to have at least 5 CTCs in your blood sample. I had 338. From the reading I have done online, this is exceedingly high and would seem to predict that I will have a worse overall prognosis and poor response to chemo. I know I shouldn't, but I am freaking out a little bit. I still need to do some additional screening tests before I can be accepted/enrolled into the trial, so crossing my fingers that I "pass" the additional screens. In the meantime, I feel like I am sitting here doing nothing and the cancer is growing unchecked. Please talk me down.
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Lemon,
What's the NTC number of your trial? Along with Z's listing of immunotherapy trials, I'm trying to maintain a list of recruiting immunotherapy trials, with an eye to "translating" the inclusion/exclusion criteria and therapeutic intent.
In the last six months I've learned a metric buttload about how to enroll for trials, and it is not intuitive. I hated being out of treatment for the screening tests, and then I really hated not conforming to the screening criteria. The most important thing I've learned is that you need to start prepping for screening at least three months before dropping treatment. That way, you can be hustled in for all the necessary screening with just a four week washout (the maximum length I have come across), so that if you aren't eligible, you can hustle back on to treatment while setting up the next trial. Also, a bunch of trials at the NIH are working together for screening, so that if you are being screened for one, they share the information with all the other trials that you might be eligible for. It's so sensible! I'd love to see a national bureau that maintained and disseminated this sort of information to trials, but I fear that HIPAA will prevent it.
You are grade two, so you will be slightly more chemo resistant than a grade three, as your cancer's cellular division rate is slower than someone with a more aggressive cancer. When the cell is dividing, it is more exposed to chemo. On the other hand, when a chemo works for you, you'll probably get a longer use of it than a grade three will. I was taught (ages ago) that grade one simply doesn't progress to stage 4, but I see people on this list with that pathology. The two oncologists I've spoken to about it say that perhaps the tumor sample was mixed, and the pathologist just happened to sample a bit with a clump of grade one. It's not a good answer.
I wouldn't let the CTC blow my skirt up, as it is one snapshot out of your entire vascular system on one occasion. It's like dipping a cup measure into a lake to get an idea of what is going on in the lake.
Best of luck on the trial. Immunotherapy is the way to go.
Jennifer
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Lemon,
I don't have any other words of wisdom to add, but best of luck in the trial!!
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Princess: I am taking Ibrance and Letrozole together in the morning. I believe there is no information in either PIL not to take them together.
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Lynne , thank you for your post about compression fractures. I am sorry you've had to deal with them though. My plan is to ignore it unless it bothers me much more than now. Many other bone mets hurt worse. So many cancer related pains, bone and otherwise. The neuropathy in my right hand is the worst of all. Like you, I take my two Tylenol at bed time and it helps enough to go to sleep. Usually. Yesterday my onc asked if I wanted something for pain and I told him that day was probably coming but not yet. (He prescribed tramadol shortly after dx. I took one tablet and said NO to any more. It made me miserable and did not help the pain anyway.)
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Today I get this "packet" that appears to be from Florida Cancer specialists about Supportive Care Management that is free with Medicare.
I don't know how to take this. It seems invasive, like another entity having access to my health records. They offer supportive care by first asking you a lengthy history, addressing all your physical, emotional, spiritual, and social concerns. And a nurse who will call and check up on me , keep track of my records and symptom management. However the symptom management part is more like suggestions over the phone, and nutritional support.
In the past 2 weeks, I've signed away my health privacy rights to 3 doctors and 3 imaging places. I'm not sure I want to share information with another group that includes non Phd people.
I don't think any of their services including educating my family members gets a visit from a real person just phone calls and pre written brochures.
Comments? Maybe I need an attitude adjustment? (in the nicest way).
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Princess, I had a similar thing through my health insurance company and I was put off by it at first too but the questions weren’t too invasive and I figure it might help to have a nurse there in case I need some inside help with claims, etc. She calls every couple of months and asks how I’m feeling and what treatments/tests are coming up, so far, so good. Maybe call, speak to someone and see what they’re offering.
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princessfluffy, a pimple? Really? Too funny. I dont see scans or get copies tho i could. I figured i couldnt interpret them but i do get a copy of report i often need a dictionary for. But now im curious just how far up the arm the humerus bone is affected thinking i could separate it in my head from the 2 tears to rotator cuff and other mess in the shoulder. At leadt the bursitis cleared up.
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gailmary I got out the google dictionary and looked each phrase up as well. I wonder how many people ask to see their PET scans? I'm torn between wanting to see and not wanting to see. Is it possible to get the PET scans in your MD Portal?
I have to also say that the members on this thread-I'm in awe of all what you've gone thru and the information you pass on even inadvertently. My heart is with you!
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I like to see my PET scans cuz the dr doesn't always go over everything...she won't always touch upon which things that have shrunk...mostly she will say "There's progression [insert organ/bone group], but not by HOW MUCH. So, I get copies cuz I like to know.
Yes, I've had to pull up a medical dictionary from time to time, but that's ok.
Going in for another scan on Wed., so we'll see how things are going with my bones. Have been having some numbness and pain here and there that comes and goes.
L
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I definitely ask to see my scans & reports, I keep copies of all of it. I like to see if things are better and don't want to be surprised if they are worse. As others have said, the Doc isn't always clear and it's best to be your own advocate.
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Thanks for weighing in on my calcium question. I haven’t been taking any and I don’t eat much dairy. Time to change it up.
I had CT scans of pelvis, chest and abdomen. I got a call about an hour after I left to confirm that I’m still taking my blood thinners because the blood clots in my lungs are still a problem darn it. It’s been 9 months so I guess it’s time to see if we need to do something more active, no news from the rest of the scan
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This drug on trial seems promising for those with lots of bone pain. Here's hoping for this to be a good alternative to opioids.
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Drug Sounds promising. Hope it works for all of us .
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Drug sounds promising, I am currently trying to get off the opioids when my side effects from this last treatment are done.
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I don't know if I should be happy or crying. Some of me feels I am on my way to the grave. Some of me feels that I should feel good knowing it could be worse.
I had a growth on my thigh that was +ILC. That was how I found out I had cancer. My cancer has traveled by blood vessel, not lymph via lymph nodes. Is that good or not good? The surgeon says It's odd because it's unclear why I ended up with a growth on my leg after bone cancer I've probably had for 3 years undiscovered. Finally biopsy diagnosed with ILC, left breast. The cancer is mild and slow growing but spread out on bones between my neck and legs with no other involvement except bones. Is spread and mild and slow growing good compared to not being spread out?
The other strange thing is that I have ILC in my left breast, but the highest metabolic area is my right clavicle, and the thigh growth was on my right. The surgeon called that unusual as well.
I guess I'm just not able to get a perspective on this whole thing. It's hard for me to get a read on what the onc and surgeon say . I wish I could just say "from 1 to 10 how bad am I?" I have no idea. My daughter (RN) says to me on the phone "thank goodness you're not stage IV" I said I am. I told her it's just a word......right?
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Princess, this whole thing is awful. The decisions, thoughts, ideas, that go thru your head are incredible. I subscribe to the "don't borrow trouble" idea, Stage IV is dang scary but treatable "for a long time" is what my Onc said, I'll take it, whatever "a long time" means to him.
Just remember to breathe.
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Thanks, BigPeaches. You and so many others have been at this for a long time-long enough as well to see the wonderful drugs they come out with. And I guess immunology is right around the corner.
I hope I can find some perspective on this. My surgeon says at some point the pills will make chemo by iv infusion obsolete. It has already started.
It always makes me think of Baby Boomers contributions to society and how their pure numbers have forced changed so much ; baby food, disposable diapers, formula, pantyhose, the Pill, driving up the price of homes (LOL), creation of meds that are awesome, most likely tv dinners...……Demographics is a pretty interesting subject!
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My oncologist said that immunotherapies are a ways out there yet for all the different types of BC (IDC, ILC, triple neg, etc.) They seem to be working better for Stage IV lung cancer and malignant melanoma. We just have to hang on until they perfect immuno Tx for us. Hopefully, that will be soon.
In the meantime, we mustn't fool ourselves. Pill form chemos can have really crappy side effects, too. I can testify to that. I'm actually doing better on Gemzar IV chemo, side-effects wise, than I was doing on Xeloda (Capecitabine) pills. It's easier, too. You have to time the pills around meals, spacing them out accordingly. Whereas with IV chemo, you just show up, get your infusion and then you eat whenever you want, as long as you're not having major gastrointestinal distress, ha ha.
(Just lost my entire post and had to re-type it again...I have NO IDEA what key I hit...so this is an abbreviated version of what I originally wrote.)
L
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Lita, you're an amazing person. Glad to know you any way I can.
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Last week my surgeon removed a growth on my upper right thigh which looked like a scab about 2.5 cmx3.00 cm. But inside it was pretty deep and 6 cm. long . What we all can't really figure out is why that spot. There's nothing there but thigh, no lymph involvement.
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