Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.
Posted on: Jun 22, 2012 10:09AM - edited Oct 28, 2021 09:22PM by Moderators
I've started this thread after suggestions that it would be useful.
Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.
Posts 1 - 30 (26,521 total)
Jun 22, 2012 05:42PM AnnE16 wrote:
This is interesting b/c it says that bone mets causes too much calcium in blood. When I saw my onc recently he said something about too much Vit D causes calcium in blood. So they tell us to raise our Vit. D levels. If we raise them too much then does this create an environment for cancer? My Vit D is on the high end now after being so low when I was first diagnosed...so should I now try to lower my Vit D?!
Jun 22, 2012 05:52PM Jac53 wrote:
I'd only lower Vit D with my onc's agreement. Vit D's an important little fella in the chemical mix.
Jun 22, 2012 06:03PM - edited Jun 22, 2012 06:09PM by exbrnxgrl
Thanks for the link. I have a single bone met which is necrotic after rads. I am on Arimidex and have been on Aredia for 6 months. My original mo wanted me on Aredia or 22 months. Current mo says only 12 months because of possible onj and lack of conclusive evidence that it prevents spread of bone mets. If I'm still doing well at the 12 month point, I'll revisit the issue with her. Caryn
Jun 22, 2012 10:49PM cookie97 wrote:
Thanks for the link. I have mulitple bone mets yet I've only had symptoms twice which were/was (?) before dx. and nothing since then. Guess the Zometa helped with that.
Keep in touch,
Jun 23, 2012 05:06PM GoldenEyes wrote:
OK I had x ray done this morning on my h ips/pelvis area. How does bc mets show on an x ray? white spots, black spots? its so hard to tell. Hoping I find out before I go on vacation next week. It could be DDD spreading all over, is that possible? I never had pain that bad tht spread down to my leg, where I had trouble walking. Have a great weekend ladies
Jun 25, 2012 09:22AM - edited Jun 28, 2012 10:26AM by myangels
I'm not completely sure, but I think anything abnormal on xray would show up as shadowing or density. Unless of course it's a fracture, then you would be able to see the fracture or break. A definitive dx not usually made till the follow-up with CTscan, Bone scan, or MRI. I have extensive bone mets and my bone mets showed up as increased uptake activity. The uptake is the dye thats administered for the bone scan. It will usually "light up" at the bones that have cancer.
You should consult with your onc after you get your xray results back and determine if you need any followup.
I hope your pain is better and you're able to walk more comfortably. Good luck!
Jun 25, 2012 03:56PM AnnE16 wrote:
Golden eyes, I am leary of xrays. When having pain I went to an orthopedic b/c I thought it was from an injury..not cancer...and the xray didn't show cancer. After 4 weeks of PT and things weren't better, they did an MRI and that is where it showed up. I would have a back up scan if you can just to be sure! Could it also be something to do with your sciatic nerve? That usually has symptoms of going down the back of your leg! Wishing you good luck!
Jun 25, 2012 05:55PM exbrnxgrl wrote:
I had PET and MRI which suggested a bone met and a biopsy confirmed it. My mo does not use standard x-rays for possible mets. Caryn
Jun 25, 2012 06:12PM SusanR wrote:
I had a very large met in my hip and an XRay showed nothing. I couldn't walk from the pain down the front of my leg. I wasn't thinking mets at the time and just rested my bones until I couldn't take it any longer and a few months later an MRI showed severe mets in the hip. For me, I think XRays are a waste of time and money. SusanR
Jul 1, 2012 09:14AM Naniam wrote:
I have widespread and extensive bone mets. I had no symptoms, no pain. My calcium level, alk.phos., etc., showed all was ok. Nothing was elevated . I was ready to leave when I just happened to mention having some shortness of breath and a cough with exertion and the cough was worse at night when I lay down. Chest xray led to a CT with contrast of my chest - not in my lungs but showed in my bones. My oncologist kept saying "we don't understand why you weren't having pain" over and over to me. My bone mets advanced on Faslodex. Am no on Araxane, we'll see. After my mets diagnosis my PCP ran some blood test and he checked my Vitamin D level and told me I had basically no Vitamin D. I did have plenty at an early check - so now have to take the Vitamin D.
Anyone having problems with low calcium, potassium and sodium levels? Now I have many areas that are painful and am having trouble with the pain meds being enough and have only been on Oxycontin and Oxycodene for about a month - looks like we will have to increase the dosage.
Jul 1, 2012 09:26AM Jac53 wrote:
Nickibird: Still no info on your raised LDH question I see. I'm writing here to bump up this thread & maybe attract an answer for you.
Naniam: I had high calcium. The onc stopped my Calcium & Vit D supplements until my bloods came back ok for that. Don't understand the Vit D link but I know it's important for bone health.
I also have widespread bone mets & Diclofenec=Voltaren=Fentanyl works best for me for pain.
Jul 1, 2012 04:32PM AnnE16 wrote:
Was that a blood test that showed high calcium? My recent Vit D was really high so doctor told me that wasn't good and to stop taking it because it caused high calcium levels. But he doesn't have a calcium number for me.
Does your doctor test your calcium, potassium and sodium levels with blood test? I know my oncologist wouldn't do this. I could probably have my ND to it. Is there a connnection with low calcium, potassium, sodium and cancer? Is that what causes bone pain?
This reminds me of the question on a Gerson thread...why do they eat potatoes b/c I thought they were "white" and starchy. But I think potatoes have a lot of potassium and sodium so I wonder if that is why Gerson has that as part of their cancer treatment?
Jul 1, 2012 05:15PM stagefree wrote:
Ok right here right now I confess I cannot wait till night to take my next painkiller, sisters. My back hurts so much today, it is Contramal time!
Smiley2, my cancer dietitian (?) too put potatoes on my diet.
Jul 1, 2012 06:56PM Jac53 wrote:
Smiley2: My onc requested the calcium level in a routine blood test. I can't find my results here at home as I'm in the middle of a move.
Jul 2, 2012 04:13PM meima-Bev wrote:
I have extensive bone mets for 6 years and my sodium level has been consistently low or borderline. I've had minimal to tolerable bone pain for the last 6 yrs. until the last month or so. This new, terrible pain is in my left shin area. Can't figure why other than new mets or bone pain due to Aromasin which I started 5 months ago. Had clear ultra sound and xray. I see Onc. tomorrow and am due for my 6 month Pet/Ct but will request whole body scan rather than usual scan which ends at mid thigh. Hoping it's se's rather than more mets!! Bev
Jul 4, 2012 03:44PM meima-Bev wrote:
Jac53, thanks for asking. Saw Onc. yesterday. She is ordering a ct scan with contrast of leg. She feels leg pain is probably a se of Aromasin. If scan is negative (hopefully), then will consider going off aromasin and back to femara, which worked in past, but stopped due to horrible side effects. Hoping for clear scan, then I have choice of being in pain from aromasin or sick from femara. I've been doing this almost 6 yrs. now and since it's still confined to bones want to save other treatments (i.e.faslodex or chemo) till I have to. Bev
Jul 4, 2012 05:38PM Jac53 wrote:
Good luck for the results Bev & thanks for giving your news!
Jul 4, 2012 06:18PM Joy78 wrote:
I just found this site. This month will mark 5 years since I had my mastecomy. But, I do have bc that spread to the bone. I also had surgery for a spinal tumor in Dec. 2006. I also had 3 Cyberknife treatments in Jan. of 2007for my back. I was on Femera and was getting monthly infusions of Zometa. Had to stop the ZOmeta because of jaw bone deterioration, which is a se of the ZOmeta. It seems all of those kinds of drugs have this se. I had been getting MRI's, CAT scans, PET scan regularly as they were watching a place in my spine. After a PET scan in Dec. there was a slight change in this area. My oncologist took me off of the Femara and put me on Aromisin. I had had no problems with the Femara, but have had some slight se, which I am attributing to the Aromisin. Trouble with my legs and tireness. After blood work last Friday, the cancer center nurse called and said there was a raise in my calcium level. I am going tomorrow for a one-time infusion of the Zometa. I also had PET scan last Friday, also, and have an appt. with the oncologist next Tues. I am wondering what has caused the calcium level to rise. I have not had any problems for the past 5 years, except have to use a walker from the problems I had with my spine. But, I have felt great this whole time and able to lead a pretty normal life. I am 78. I don't have any pains at all. I am trying not to worry but am wondering if anyone has had this problem and what. All of the postings I have read above are very encouraging. Thanks.
Jul 4, 2012 06:29PM chrissyb wrote:
Hi Joy and welcome to BCO and this thread.
When you have a rise of calcium levels in the blood stream it is often a sign of active bone mets or a vitamin D3 deficiency. Another cause can be related to the thyroid.
Have you ever had your D3 checked? It is just a blood test but it is important as you have bone mets (so do I by the way). If your D3 is low, it can also explain your calcium being high as it is the D3 and magnesium in your blood stream that helps the body put the calcium from your blood back into your bones rather than excreting it out through your kidneys or causing kidney or gall stones.
I'm glad you are and have been feeling so well through out your journey with BC and I hope it stays that way for a long while to come.
Love n hugs. Chrissy
Jul 4, 2012 08:02PM - edited Jul 4, 2012 08:10PM by Joy78
Thanks, Chrissy. I get regular blood tests, but would that be a separate one from just the routine ones. I will mention it tomorrow when I go for the infusion. The blood work I had done in May was the best it has ever been. So, this really has me puzzled. Unless, which is what I am thinking, the place in my spine is what is causing it and the new med, Aromisin, isn't helping. The orthopedic oncologist did tell me that I could have more of the Cyberknife treatments. The blood work for the tumor markers was better than it has ever been. When I was first diagnosed back in 2006, those numbers were very high up in the 100's. It is down to 41 now, and the normal is 38. In February, when I saw the orthopedic dr, he was the one who mentioned about this place they have been keeping an eye on in my spine. And, he preceded to tell me not to worry about it and the medical oncologist had told me not to lose any sleep over it. That I was more worried about it than they were. Easy for them to say. So, that is another reason why I am puzzled now after everything being pretty good in May.
I see where you are a long-time survivor..... nearly 9 years. That is wonderful and hope that you feel good. And continue to do well. Thanks again for your encouraging needs.
Hugs back to you, too. Joy
Jul 5, 2012 12:56AM ibcmets wrote:
I have bone mets since the start 3 years ago. Since around Arpil I've had pain in the L knee and down my calf and back of knee. Had to go to orthopedic Dr. Did MRI and found moderate arthritis. I'm going to get a shot of Synvisc in the knee this week. It's supposed to last 6 months.
Onc will request full Pet scan this month. I get them every 6 months, but usually only till mid-thigh.
Hope you can get rid of your pain soon.
Jul 5, 2012 07:21AM chrissyb wrote:
Joy, it's good to see your markers dropping so well. At 41 you are almost back to normal and if the pain in your leg was due to mets they would be rising so I'm pretty sure you are looking at either arthritis or perhaps a bit of nerve damage from the mets in your spine.
I have very bad arthritis and had a total knee replacement done 12 weeks ago so the other leg has been taking all the work to keep me getting around. That knee also needs to be replaced and I have been having shin pain as well but I'm sure that is transfered from the knee.
Apart from fatigue I am doing very well and am only on Femara and have been for 21 months but it seems to be doing its job and keeping me stable. Here's hoping the Aromasin does it for you.
Love n hugs. Chrissy