Bone Mets Thread
Comments
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Carolyn - beautiful picture! I agree with you about this website and these women being a true gift.....I look forward to checking in daily to read my favorite threads and to find out how all my friends are doing. Have a fabulous time in Istanbul. I was there once a LONG time ago - in college - and loved it...I am sure you will too. We definitely want pictures!
Deanna - thank you for the info on the supplements. I had a MRI on my hip yesterday and am really praying that it's an injury and not a tumor that is causing me so much pain. I asked my oncologist about running and high impact activity with bone mets ( I think I was talking about this on the fitness thread) and she said it was fine, but that I needed to start taking supplements and then didn't say what..... so I will run those past her.
xoxo
Andi
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Great info on the supplements. My onco has me on 1000 mg of calcium & vitamin D even though I eat extremely healthy, but I am going to check out the quality of them as I understand there is a huge range of difference between companies with some supplements having hardly any of the actual ingredient.
I don't think we have the brand names that Deanna talked about here, but I am going to look into it.
Had my 3 month CT scan yesterday. Hate the contrast that they put in your iv, I always swear that I have wet myself! Not sure when I get the results, waiting is the hardest part.
I hope for a great day for all on this thread.... Dee
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Dee, I had my CT scan and a bone scan yesterday, too. I laughed when you said that you felt that you have wet yourself! I HATE that feeling. The bone scan took a long time and they injected more stuff into me. I don't know when I will get the results, but I have an appointment with onco and Faslodex/Zometa treatment next Monday, and I am hoping for results on that day. Today I feel terrible. My back is killing me, so much it was hard to get out of bed. I guess my body doesn't like getting all of this junk pumped into it. I don't remember feeling this bad after my last scan. I always feel awful after Faslodex/Zometa for about a week. I am praying that the test results are good so the treatment will seem worth it.
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BL222, Finally my back is not killing me, does a Tylenol or 2 help? I found that taking one every once in a while does wonders, although I had to take many after my Pamidronate infusion.
I'm surprised they would do both scans on the same day, I've always had to go to have them on different days & it annoys me, going to Nanaimo 2x. I dislike the bone scans so much, I get completely freaked out & my husband has to come in with me & basically talk me off the ledge!
I don't have an appt with my onco until the 24th, but I'm going to call my family dr & see if he can tell me if the tumors have changed at all. (fingers crossed for both us) Dee
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So I got a copy of my CT scan. I don't know what all of it means but I have "lytic lesions" I assume this means bone mets, "involving manubrium, R 5th rib, T9, L3 & L5 as well as possible left ilium" Not good....
Go to see my onco on the 21th, hopefully she can shed some light on this as well as the "atelectasis of the left major fissure" of my lung. If any of you can shed any light on these, it would be much appreciated... thx, GG0 -
I got the results of my MRI today and I fractured my pelvis - my IT band pulled away from my hip bone and my pelvic bone and caused part of it to shatter. My oncologist is sending me to an ortho surgeon that specializes in cancer patients whose bones have been compromised by cancer and treatment. The good news is that it wasn't the result of any new cancer activity, just the fact that I did too much too soon. In general she said high impact activity even with bone mets is fine (and I think I've mentioned before that mine were everywhere.) I asked her about supplements and she recommended Vitamin D....she said that was all I needed. (hmmmm....... from where I sit with a broken pelvis I am not sure I believe her.)
GG - I got a copy of my MRI before my oncologist called me to explain it, and I had no idea what it meant....it had a lot of scary words in it (including "lesions") and then when she called it was all okay. (besides the broken pelvic bone) Not knowing or understanding is the worst - hang in there - is there any way you can talk to him/her before the 24th? It would definitely relive some anxiety. I will be thinking of you.
Wishing everyone else well..
xo
Andrea
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Geeze Andrea..ouch!! Sorry to hear you have a broken pelvis. Glad you're getting good care.
GG & Birdlady - sending good thoughts for your scan results.
Hugs to all,
Terre
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GG a 'Lytic Lesion' is a met that has caused holes in the bone and all those places that are listed after those words means they are the places affected but not how badly. The 'Atectasis of the left Major Fissure' means that a part of your lung has collapsed but it's not saying why and can have many causes.
GG I suggest you get an earlier appointment if you are really worried or at least make a phone call and see if you can speak to your onc.
Good luck with it all!
Oh Andrea! Double ouch!!!! Are they talking hip replacement as part of your treatment? Just Vit D on it's own does a little toward bone health but it needs the aid of magnesium, boron and zinc and depending on your calcium levels are, calcium as well. Hope you get back on your feet sooner rather than later!
Love n hugs. Chrissy
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You all have so much to deal with, yikes. I am NOT looking forward to that, so scary. Chrissy, glad you are able to help out the girls with their reports. I have mine, but I just scan through them. I think they sound worse than they really are! I forget who it is going to Istanbul, Carolynn maybe? Anyways, have a fabulous time and we do hope you can share pictures. The picture of you is beautiful.
I don't think any of us likes that darn contrast! I almost threw up after I got mine, but it passed within about 60 seconds. And my RO usually gets me my results within a day or two, so not a lot of waiting.
Off to play in Laughlin for the weekend. For those that don't know, it's like a mini Las Vegas.
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Dee, I can take Tylenol or I have some stronger pain meds. My back still really hurts in the morning, but once I get up and around I feel better. I am nervous, but looking forward to my appointment Monday with the onco to get results. It is also my treatment day, so I know I will have another week of feeling like crap. On the up side, I get to see my kids and my baby granddaughter this weekend. Family time is still the best medicine for me.
Andrea, I hope you can get some comfort. I can't imagine how much it hurts for you to sit.
GG, praying that you and I will get great scan results.
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Thanks chrissy for your help. I think the lung collapse is from one of my implants that ballooned to 2x the size of the other one & I was having trouble breathing, but none of the Dr's could figure out what caused it & they didn't seem that concerned that I was breathless. It has gone down considerably but still hard as a rock. The PS did an US & said the implant was fine that there was a hematoma but doesn't know why. Says it will go away, that was almost 2 months ago, can't go soon enough for me. LOL!
I realized that my onco appt is on the 21st. I called her ass't today, but she is away until the 20th so I will just try to ignore everything until then.
BL222, I wonder if you need a new bed or pillow?!!
I found that my back & neck were killing me in bed, then I bought a new pillow & now I get up pretty much pain free. Fingers crossed that your scan results will be good.Best to everyone else on this thread... off to get blood work done & then tending the garden. GG
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GG, have made a good point. We have a relatively new sleep number bed, and I have been trying adjusting the firmness, but haven't gotten it right I guess. The pillow is another issue. I do need a new one. What kind did you get? Firm, soft, down?? There are so many choices and I can't decide in a store what will feel good when I am laying down trying to sleep on it. I'm sure you are right, and it's one or the other or both because I can sleep for hours in my recliner without any back pain when I wake up. I know it sounds obvious, but I want to sleep in my bed with my husband instead of living in the recliner.
Best to everyone! I am going to get the house ready for my family to come home this weekend. This will involve some creative baby-proofing. She is ready to start walking any time:-) Birdlady
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Birdlady, I bought a pillow specifically for side sleeping and a down alternative (don't really like down) as that's the only position I find comfortable right now. I bought the most expensive one, on sale 60% off, because I have bought cheap pillows before & hated them, so they are in the guest room!
Have fun with the family on the weekend. GG
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Birdlady, I have a sleep number bed as well and it takes a bit to tune it in. I've also found that sometimes I need to change it up a bit. I keep the bed relatively soft (35 or 40) and use a latex (relatively firm) pillow. But sometimes that makes me sore so I firm up the bed and use a softer pillow. Don't give up on it - you'll find the right combo!
Goldie - have fun in Laughlin! I lived in Vegas much of my adult life. Laughlin is great fun!
GG - good luck with the scan results!
Hugs to all,
Terre
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Just a few questions as I'm new at all this.
1. Since I have multiple bone mets do most rad doctors rotate the radiation or concentrate in one area?
2. I have a few areas that seem swollen or compressed that even with radiation isn't resolving. The MRI didn't show compression, but I feel it. When I walk more than ten minutes, I feel as if my back is going to cave in, dizzy and faint. Is this normal? If I don't walk a lot or more inactive I don't have dizzy or sick feeling. Or, pain in my 7th or 4th lumbar.
3. What is the best pain medicine for bone pain?
4. How long does it take to resolve bone pain (after radiation)?
5. Is massage and chiropractor treatment ok?
6. Would a neck brace help for walking distance?
7. I believe my oncologist wants me to have a port. Can you swim with ports? Is there another way to do it?
Thanks.
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hindsfeet,
I can't answer all of your questions, but I can do at least one.
Once you've healed from port placement, you can swim or do just about anything. They require only monthly flushing, which would be done after your infused tx. The other option is a PICC line which is a less invasive procedure to place but requires much more care and is an open line that must be kept covered with a bandage. You may not be able to swim with it. I have a petite Bard power port and I hardly know it's there. It is also used for blood draws and scan injections. I really appreciate it.
I would check with my mo regarding massage and chiropractic tx. I would think that it might not be advisable with extensive bone mets. Thinking of you.
Caryn
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GG, thanks for the pillow advice. I don't like down either, but will look for a nice down alternative pillow. I only sleep on my back because I had hip surgery on one side, and breast surgery/recon on the other side and I just can't get comfortable on either side at this point.
Terre, I will try lowering the sleep number to see if that helps. I do have a firm pillow. I have tried using a couple of pillows to prop up a bit, but that doesn't seem to help. I sleep well, I just can't move from the pain when I wake up. Pain pills don't help at all, so I don't bother with them. Once I get up and move around I am fine. This confuses me, and until I get my results back from scans I had on Monday I am worried about progression of bone mets.
Hindsfeet, I don't have many answers for you. Like Caryn, I have a petite Bard power port and I barely notice it. I swim a lot. I am thankful to have it because it gets used for blood draws, infusions, and scan injections. This makes these procedures much easier for me and the person using the port. I agree that you should ask your doctor about chiropractic and massage.
Have a great weekend everyone!
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I am picky about pillows too. Really picky. I finally found pillows that are amazing. Purchased them off of the Home Shopping Network. I am putting a link here for anyone interested. There is a video you can watch on the page as well. Made my Homedics.
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Hindsfeet, they will likely radiate only the spot giving you the most trouble. There is a lifetime limit on radiation. A rads onc would be able to tell you how much you're allowed. It's not uncommon for your back to hurt in additional areas other than where the mets are. I have the same feeling. My pain was never taken care of by meds. Opiates just made me high with pain. I prefer marijuana for pain control. Rick Simpson oil has been giving me relief...more so than smoking, if you can get your hands on it. I've had rads to two areas. My hip was radiated and the pain never went away. My spine was also radiated and the pain went away in a couple of months after radiation ended. I wouldn't do massage or chiropractor unless you run it by a doctor first. Some bones affected might be to fragile to withstand it. I sleep in a neck brace to avoid pain in the a.m, so it might help keep your neck steady while walking if you find it hurts when it's getting jumbled. Haven't tried it myself, but it sounds like a good idea. Port, don't know. Never had one. I hope your treatments go well and you can find some relief from your pain. Been thinking about you. How did things go in California?
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Massage is fine during all stages of cancer tx as long as it's done by an oncology massage therapist. Check s4om.org or massagetherapy.com for therapists in your area.
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Hindsfeet: I've done spot radiation on spinal bone met areas twice. They radiated me 15 X. Before they completed it, my back was no longer in pain. It worked well for me. When I did have a lot of back pain, I took vicodan only at night. Hope they get rid of your pain & stable again.
Terri
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I went to a chiropractor for years before BC. Once I had multiple bone mets in my spine, I was told no chiropractor or massage as this could result in a spinal fracture.
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Help! Me AGAIN!
Recap: I was stage
IIIA in 2002, 3 cm tumor in right breast (lumpectomy) and 4 positive
lymph nodes out of 26 removed under right arm. I was ER positive, PR
negative, HER2 negative then. I had 8 rounds of chemo, 33 radiations, 5
years on Arimidex. Cancer "free" until 2013. On June 28, 2013 I was
told it had come back, stage IV. Still ER+, PR-, Her2-. I have numerous
lesions in my bones: Mets to skull, spine,
ribs, sternum, pelvis, upper left arm, left thigh. I had nodules on
outside of
right lung which are gone. I had Pleural effusion June 28, 2014,
drained 900 ml,
it's gone (just a little remains). I had positive lymph nodes in chest,
gone now too. So now it's been just bone mets.I was put back on Armidex last June and October 2013 I began Xgeva shots once a month.
My tumor markers CA25/27 or whatever, have
NEVER been normal. In June 2013 when I was first diagnosed, they were
898. Slowly, after being on Armidex since June 28, they began dropping,
very rapidly at first. Then in February of 2014 they stopped dropping
and got to 132.Now the bad: April 166.6, May 196.7, July (last
week)
272.9. My
PET scans have gotten better, in fact, the one in June 2014 was better
than the
one in Feb. 2014, with nothing lighting up. But since my tumor markers
are climbing again, my onc. is feeling something's not right.
He is wanting another PET scan the first week in August, and an MRI of
the brain. Coincidentally, my regular dr. had an MRI done April 17, 2014
(headaches) and it was fine. But the onc is now worried.
What is going on????0 -
Hindsfeet,I think I can help with most of your questions, although I might not be right...don't hold me to these....
1) I had bone mets all up and down my spine, in my ribs, sternum, pelvis. They radiated through my chest wall to my upper back area...(lumbar, right?) only. Didn't do pelvic area or hips. I think that is pretty much standard; to focus primarily in one area.
2) The radiation didn't resolve all of my issues. I had some compressions in my lower back (L3 maybe?) and I had a surgery called Kyphoplasty (sp?).....easy outpatient procedure and it completely took care of it.
3) Honestly, I found the best medicine for bone mets to be methodone. Yes, I think it's what they give heroin addicts trying to come off heroin, but for me it was amazing. I'd been on oxycodone or oxycotin for 5-6 months, and the second I switched to methodone I felt AMAZNG within 12 hours. No "high" feelings....I couldn't even tell I'd taken it - but the pain was totally gone.
4) My bone pain wasn't resolved 4-5 mo after radiation, which is when I switched to methodone. I then stopped taking methodone about 5 mo after that and although I do have pain here and there once in a while, all in all it is gone. I definitely have some stiffness in my mid spine and I don't think that will ever go away.
5) I don't think massage and chiro is advised while you are in treatment, but I have been getting regular massages for about a year now (when I was about 6 -8 mo out my oncologist said it was okay) I don't think I will ever go back to a chiropractor. I am afraid my bones are too brittle from radiation and he'd break me!
6) I can't answer this one. I had a brace that went from my neck down to my hips for about 3 months after radiation, but I didn't do much walking.
7) I have a power port and yes, you can swim with them. I've had mine for almost two years now. It's in my arm - upper arm - as opposed to my upper chest. Mine rarely bothers me. I'd like to say I don't even know it's there but I do, especially now that it's summer and I am wearing sleeveless tops, but people don't usually notice. It took one of my kids over a year to notice it...... and then he was like "mom, WHAT is that in your arm?????" It was actually pretty funny.
I hope that helps!
Wandering Spirit, I'm afraid I don't have answers.....but I will be thinking of you and sending positive vibes your way. Keep us all posted!
Hope everybody else has a good week!
xoxo
Andi
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Wanderingspirit, I answered you in the other thread.
Love n hugs. Chrissy
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Wanderingspirit ... I have no ans. for you; however, I'd say clear brain scans and improved PetScans are a good thing. Regarding the tumor markers, other factors besides bc can make them rise, so I'm told. Like injuries, illness, inflammation, etc.
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Hi All! Hope everyone is feeling okay today.
Finally able to see my Onco. She is very pleased with my results so far, my tumour markers are down by 50% & my tumours are stable. I would have liked to see a reduction but I guess stable will have to do for now. I've only been on Anastrozole for 2 months & have had 1 infusion of pamidronate.
Did anyone else find that they have to get up more often in the night when they started on anastrozole? The onco wants to test for diabetes because of this, but I can't believe I would have diabetes, I eat extremely healthy & am active. I've only had this problem since I started on anastrozole. Thanks for any insight. Cheers! GG
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Hi gg27,
Glad to hear things are going well so far. I was on Anastrozole and Pamidronate for a couple of years. I did wake at night to use the bathroom, but I think that was because I took all my meds/supplements with a big glass of ester right before bed. I've recently switched to Femara, but still take everything before bed with that big 'ole glass of water . Hope you continue to feel good!
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Hi Chutzpah, Chrissy, Kiwi and Deanna,
I decided not to get any more Zometa infusions afterall due to side effects. That being said, Doc sent me for a brain MRI, per my request, and it revealed I have brain mets. I start radiation to the brain tomorrow, followed by rads to the hips and spine. I figure if I'm going to consent to brain rads, may as well get those aching bone parts zapped too!
On a lighter note, I do see a nutritionist and take supplements, including Calcium Magnesium Zinc and D. I think Deanna wrote about making sure it's citrate form and not carbonate, and this is true, it's important to read the bottles and the ingredients. We are almost like scientists sometimes with this stuff!
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I somehow dropped this thread off my favorites after my last visit, and didn't realize it until tonight. Talk about chemobrain!
Anyway, Carolyn, you are so beautiful! And your pix is a perfect example of why bc mets can be so misunderstood. And your trip sounds wonderful!
And Terre, your boss sounds amazing!
GG, yes, most nights I get up 2x or 3x (since my dx), and it's really annoying and also worrisome b'cuz I've read that not sleeping well can be a predictor of a worse outcome. I thought the excess pee-ing had something to do with the physiology of bone mets, especially b'cuz I also had some significant muscle wasting and weight loss around the time I was re-dx'd. But I just don't sleep as well since being on Anastrazole, so it's probably a big part of the problem.
And speaking of muscle wasting, has anyone else with spine mets had a problem w/hunching? My DH mentions it all the time -- how hunched over my posture has become, and how I need to remember to stand up straight, and I've occasionally caught a glimpse of myself in a mirror and been rather shocked. I'm guessing it started when my back was hurting really bad a few months ago, but I'm wondering if anyone is also dealing with it, if you've had any success correcting it. I've been thinking of asking for some P/T for it because I can't seem to stop doing it on my own. Deanna
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