Bone Mets Thread
Comments
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So glad to hear that your second opinion was positive! I go get mine tomorrow, and I know how you feel about time ticking away. That's exactly how I've been feeling. Hopefully tomorrow I hear some positive news too!
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Terre, yay for your second opinion! Your first onc needs to go back to school or change his specialty as as a cancer doc he sucks! I have never heard such negativity from a medico before.
Anyway, I'm so glad you have found this new one and he certainly sounds like a better fit for you!
Here's to your many years ahead!
Love n hugs. Chrissy0 -
Terre - so glad to hear that the second opinion worked out so well for you. Your first doc should be horsewhipped for his manner and not to mention his method of treatment is decades behind today's standard of care for bc patients. Glad you have found the hope and help to live for many more years.
Hugs, AJ0 -
KiwiCatMom, thank heaven you saw another doctor! The RO sounds like he's operating on really outdated information! I'm so glad your new doctor is proactive and positive!
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Terre,
I was so pleased to read your post! It's great that you got a second opinion and that you've found an onc who's going to treat you as you deserve to be treated. The last one sounds like he needs to retrain!
Nicky0 -
Thanks so much!
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Terre, so glad you sought out the second opinion. What you said about Doc #1 did not sound right to me; I've never heard of a doc not ordering labs, scans and downplaying a MO & recommending hospice without scans results and trying diff. treatments, etc. If it were me, I'd be done with doc #1 and if I needed radiation in the future go with a referral from doc #2. Best of luck to you!
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Haven't checked this thread for quite awhile. Very happy to hear the news Kiwi. I've never heard of having only an RO, not to mention how negative he was! Sorry to hear about the new mets for Terri, Bethcon, and Dayla. Bethcon, keep in mind Jeninmichigan who started with bone and liver mets and is NED at least 5 years! I pay close attention to what she does and have printed out some of her posts to keep in my file. Caryn, sorry you asked me ? Way back about what other tx they offer at ctca but looks like it was answered. One thing I always worry about is that very few docs seem to deviate from standard of care. I worry about Obamacare and how much restriction there will be on our treatments and what will e covered. Our dz is very complex and unique to each one of us and we need docs who are able to think outside the box sometimes and be willing to try things that might be off label. I think with all the changes coming its so important to take care of our health as much as is possible and try our hardest to not need treatments. I know that doesn't make sense and may not even be possible. I try to do some alt stuff just in case it might give me more time with each treatment than I might otherwise get. Its very scarey. One possible good thing is that where a need arises, there will usually be someone to fill it. For example some drs are disregarding insurance and charging a yearly subscription to their patients, who then have access whenever needed and pay an agrred to price for each visit. The insurance paperwork nightmare is eliminated and costs are kept down. Granted these are just general practitioners but its just in the beginning of all this healthcare nonsense and I look fwd to other creative solutions that may arise.
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Hi HLB,
Yes,the CTCA question was answered. Sadly, they offer nothing new or extraordinary. They do include nutrition and other complementary components but that's readily available to many of us (my HMO offers classes for just about everything) and not curative. Because they are a for profit organization, unless you have platinum insurance or very deep pockets, they won't deal with you. I've heard it's not very pretty once you've exhausted your insurance either. Several other objectionable things going on there, but never mind.
Medicine, be it conventional or alternative is expensive. Since most of us rely on insurance to cover our care, and since funds to do so are not unlimited, standards for and of care are a way to ration available funds. I'm not saying that it is always fair, right or efficient but it is a matter of economics. I can't imagine any insurer or the government paying for treatments, diagnostics etc. that are unproven or untested. Human lives are at stake, yes, but if someone can think of a way to give everyone what they want (or think they want) with limited funds, let me know.
Caryn0 -
Yes, everything you said is correct and unfortunate. What I would like to see happen (but never will of course) is health insurance to be completely done away with except for external causes (such as auto accidents). I think the cost would be reduced in so many different ways that we could afford to do what we need without beaurocrats decided what we can get. Certainly costs have to be rationed but when your Dr thinks you need something, that should be the final say, not insurance people whose main interest is to control costs.
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Terre,
So glad you found the right oncologist. I got 4years out of Femara, now moving onto Aromasin/Affinitor. I'm glad you received a better perspective and someone who has lots of tools if something does not work. There are people living quite well with our diagnosis for years.
Terri
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Thanks, Terri! Had my blood tests done today; just waiting for the scan appointments. I thought I was handling it (the original prognosis) and being optimistic, but it's like this huge weight has been lifted and I realise how much it was affecting me. Even if the initial prognosis is correct, at least I now have hope and know that I've been proactive about things.
Kind regards,
Terre
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Starting radiation today on my spine. 10 rounds to my L4, let's get this over with!
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Good luck to you!
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Good luck on A/A, Terri. I hope you get a long run on it without nasty side effects.
Bethcon, it's curtains for those buggers!
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Beth hope your treatment goes without any hitches and you get pain relief quick smart!
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Bethcon, Hope your strength is renwed each day. Cancer cells, prepare to die!
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Good Luck Beth. Death to those nasty beast!!
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Beth, I hope the radiation gets rid of your pain.
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Hi -
Since being re-diagnosed last year with bone and liver mets, I have had on and off pain. Radiation took care of some bad pain in my ribs and tail bone. The latest PET scan showed a large spot deep in my humerus. I have some in my hip bone but that has not caused me any pain. My onc seemed more concerned about the humerus than any met before. Even the ones on my spine. I am assuming ( I know, bad idea) that the cancer causes the bone to weaken so he's afraid it will break. Has that ever happened to anyone?
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Thank you all for the support! Fluffernutter, my vertebra is fractured because of the stupid mets. Hopefully they can zap it for you before it causes too much damage.
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Flutter, my hip was replaced because the doc thought it was ready to fracture, and then when he did the surgery, he did find a small fracture. The cancer had destroyed most of the head of my femur and an area below the head.
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Fluffernutter, I have a pin in my humerus as it was so badly eaten by cancer that one small bump would have shattered it. After the pin placement I had rads which started the killing process of the cancer and the AIs have done a good job of keeping it in check. My arm still gives me some pain but it can be controlled with pain meds.
My doc told me I could choose or not to have the pin placed but it would be far easier to do it as a preventative than have to do it to piece the bone back together.
Love n hugs. Chrissy0 -
Fluffer, I suggest you get an appointment with an orthopedic oncologist. They are the ones that keep an eye on your bones and intervene (after discussion with your onc) with surgery before a break happens. I see mine every three months.
Beth, I hope the rads get rid if your pain. Remember, it can take approx six weeks after rads to get the full benefit, and it can also get worse before it gets better. Just hang in there and be patient.
Terre, so glad you found a medical oncologist and he is taking care of you. Kia Kaha!!0 -
Thanks, Latte!
Good luck with the rads, Beth - nuke those nastly little mets into non-existance! Wishing you the best with the radiation. I had five on my spine and it helped a fair amount with the pain. Have you had radiation on your spine before?
Flutter - I had a pin put into my femur as it was ready to shatter. It was found through an x-ray for hip pain. When they placed the pin, they found I did have a small fracture. Once I healed from surgery (which was pretty quick), I have so much less pain than I did before the pin went in. My arthritic knee hurts a lot more than my hip. Definitely see an orthopedic surgeon and get it taken care of before it gets worse. As the others said, much easier to to a preventive pin than fix a badly broken bone.
Good thoughts to everyone!
Terre
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Kiwicatmom, this is my first time getting rads to the spine. I have 4 spots, they are only radiating 2, does that make sense? I'm not sure why they don't zap all of it. Maybe the spots are too small?
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Beth to start they will do what they consider to be the worse ones.
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Flutternutter, I had a pin put in my humerus as the bone was so badly eroded it could have spontaneously fractured at any time. I had no pain in my arm prior to diagnosis. Like Chrissy I had radiotherapy after surgery to the holes and regained full mobility with no pain. Only proviso is that you can't lift anything heavy or do anything strenuous with that arm. Six months later my arm started to swell and I had an ultrasound, x-ray and mri. None of my med team knew what was wrong!!! Dr google suggested lymphoedema and I asked them if that's what it was but it wasn't until my arm was 56% larger that lymphoedema was diagnosed. Since then it's been a nightmare. I cannot straighten my arm now and my shoulder is tightening up. So my advice is to be watchful of your arm and insist on seeing a PT with LE experience if you have any swelling post surgery. I don't know if preventative exercises work or not but maybe your PT could advise you on that.
Bethcon, I have multiple mets, literally everywhere on my skeleton from skull to top of legs. I had rads on my cervical, thoracic and lumber spine, one tumor was pressing on the spinal cord, the others were cause for concern also. Otherwise the onc hopes that treatment (zometa & chemo in my case) will stablisise the mets. and maybe shrink them (I should be so lucky!). Maybe your onc is thinking the same..
Take care
Aoibheann
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Hi BethCon,
I had similar - have spots on my ribs and hips, but they only did my spine and femur. Apparently standard procedure and I'm sure Chrissy is right. Take good care of your tummy and don't be surprised if you feel like you have the stomach flu for a bit. My first couple left me with some amazing nausea, but the side effects lessened to just minor nausea by the third one. Mine is in L1, which apparently is an area that can cause nausea. Other than that, it wasn't bad at all. I have very pale skin and burn at the thought of sun (or radiation), and had no skin problems. I was tired for a couple of weeks after, which surprised me as when I did the breast rads, once the radiation stopped, the fatigue stopped. Apparently with this type of radiation dosage, it leaves you tired a bit longer. But it does bring pain relief. Just remember that the radiation side effects are very temporary and a nuisance for a few weeks.
The benefit is well worth it. I hope yours is going well!
Terre
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I had my 4th round yesterday, so far the only side effect is fatigue. I can't make it through the day without taking a nap. I had nausea before the radiation, I think because of the liver mets. Nothing severe though. They did say I will probably end up with diarrhea, but nothing yet. I have 6 more rounds to go.
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