Will someone with bone mets tell me what symptoms they experienced before they were diagnosed?

I was diagnosed with bone mets when I got the first PET scan which was done during initial tests before beginning chemo & Herceptin. No symptoms.

Other than a backache I figured was gardening or age related, no real symptoms and I had mets to skull, spine, hips, legs, shoulders. If you have even the smallest intuition that you might, go get a CT scan or MRI.

Love and light,

Lisa

I am going to start taxatere and herceptin.

has anyone done this and how was the experience? i will do a low dose for 6 months.
i have bone mets.

The first week of December I had what I thought was lower back muscle pain (I had never any back pain before, though). Had had a clear (they said) bone scan in October. Was feeling great ever since May surgery and all through October and November.

My rad onc, during a regular followup appt. the end of Dec., said to get a CT scan. That showed mets to the bones (and liver). An MRI of the spine showed mets, too.

I have pain in small area on the right (mast.) side in front just below the ribs and more (worse) in the back. I don't know if it is a specific tumor or if it is a tumor pressing on a bone. Onc (another one in the practice) today didn't really answer the question. Am on weekly Navelbine so will ask again next week.

Just when you think things are good...

(Had 2 Herceptin treatments, with the Navelbine, but had a very bad heart reaction (had to go to the ER), so I'm not getting that anymore. unfortunately.)

Sue

Sue,

Your case sounds so much like mine. I had lower back pain for months before diax, yet had just had a clean bone scan a couple of months earlier. After diax of liver and bone mets, I found out that a pain just under and inside the bottom of the right shoulder blade is a sign of cancer in the liver. I had had that pain, too, and thought it was muscular!

On my first Navelbine/Herceptin treatment, I had a reaction to Herceptin with veins shutting down, blood pressure and oxygen levels plummeting, heart slowing down, rigors, etc. Was in ICU with a 50/50 chance of living. Then, after about 3 days, everything turned around. Stayed in the hospital another 5 or 6 days where they gave me another Herceptin/Navelbine treatment, but let it drip for 8 hours! (Talk about a careful infusion.) And since then (Sept.), always with 50 mg. Benadryl as pre-med, have had weekly Navelbine/Herceptin treatments. I don't know why my onc decided to try another Herceptin, but I'm so thankful he did.

Love and light,

Lisa

When I was in radiation (ended in August), one of the rad oncs (not my "main" one) said, when I asked about Herceptin, be careful what you wish for" re the potential for heart problems. I was so short of breath around 2 am (I live alone), in January, that I just had to call 911. It was a different kind of shortness. So scary.

I was dx with cardiomyopathy/congestive heart failure. I guess that's why I'm not getting Herceptin anymore. But I did have the shortness BEFORE my loading dose of Herceptin. So I'm a little confused. But I am sure the Herceptin brought on the "big one."

I was so sure it was muscle pain. Didn't even think about bone mets.

We just never know what's going to happen, do we?

Sue

Lisa: Was the pain you experienced severe or more of a soreness? The inside bone of my elbow feels like I have bruised it, and it get sore and stiff during the night and sometimes wakes me up. Movement seems to help the stiffness, but the sore spot on the bone remains. I am embarrassed to tell my onc that I have a sore elbow! Thx.

From you all's past experience, which test is better for BC follow-ups. MRI, CT SCAN OR PET Scans.

I usually have PET Scans, and am scheduled for one Jan 27, and of course scared and won't be ok unitl I have the results.

Thank you--

Tests always scare me evern if they are routine. I have my first MUGA coming up. Good luck to you.

Jane

Dolores,

Some on this site have had terrific experiences with PETs re: their bone mets. I have had all the tests and my onc seems to believe that with bone mets, none are completely accurate. He says that's because even if cancer cells are killed, the lesions they've created stay behind and show up as "hot spots" on the tests. So it's hard to say whether they're old lesions now under repair or current problems. Since I was just diag in Sept, I look forward to having the same test (whether PET, MRI or CT) another couple of times to look for any type of healing, which with bones isn't fast.

Don't forget to breathe until your PET! I'm sure whatever you've been doing to fight the mets has been doing the trick and the PET will be your friend.

Love and light,

Lisa