Bone Mets Thread
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penny4cats, I had radiation on my hips and spine and had tatoos to mark, and layed on back with machine going around me and under me so it was getting my back/spine by me laying face up. I had 13 treatments on one hip, 14 on spine and 15 on other hip. I had great pain, dr thought rads would help pain, but it didn't, he asked me if i thought we should do more rads. (I was like, huh? you are asking me??) He decided not to do more. I did find the pain was bc of a fracture and hole in rt hip so ended up having hip surgery in March but doing much better now. I don't know the other questions you asked, probably someone else will answer those. This is a great helpful, informative thread. Great topic
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HLB:I am taking Tamoxifen now, the only treatment thus far. A follow up with the oncologist in three weeks now and my first injection of Denosumab (or whatever the heck it's called!) then. Hoping it helps with this back pain.
Jac53: Thank you for the mention of no side effects to date. That is helpful.
Thanks all!
Scorch
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Hi ladies, new to this thred, but am finding it very interesting. I have just found out I have bone met. I broke my right femur and it was discuverd there was. 23.6cm mass growing on it. The biopsy showed in was the same cancer with all the same markers. The a pet scan found three nodes under my sterile. I don't know what my complete treatment plan is yet. I go Theseus for my radiation mic up. Then I meet with my mo.
I have a mixed wave of emotions. I know I can get through this treatment, but what then? What do I have to look forward to?
Confused. ALICR0 -
Hi ladies, new to this thred, but am finding it very interesting. I have just found out I have bone met. I broke my right femur and it was discuverd there was. 23.6cm mass growing on it. The biopsy showed in was the same cancer with all the same markers. The a pet scan found three nodes under my sterile. I don't know what my complete treatment plan is yet. I go Theseus for my radiation mic up. Then I meet with my mo.
I have a mixed wave of emotions. I know I can get through this treatment, but what then? What do I have to look forward to?
Confused. ALICR0 -
NaniAlice. I am so disappointed that you have this news. I am newly diagnosed as well, so I am afraid that I can't advise you on the path forward--lots of knowledgeable women here can do that for sure. I can only offer support. I'm so sorry.
Scorchy
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Hi Alice ((((((hugs)))))). I know it's all so overwhelming when you hear those words and its really hard to not think that life is about to end for you. Please don't think that way as it is possible to live many years with mets and have a good QOL.
You will find that after your PET and discussions with your onc you may find that you will be on one of the Aromatase Inhibitors, ie Arimadex, Femara or Aromasin as you are ER/PR+. Being stage IV you will always be doing some form of treatment for the rest of your days. Treatment is not given as a curative measure but as a palliative one controlling the cancer for as long as possible with rads and meds for pain management.
I'm three years into this dance and doing well. QOL is good........hoping you will stay around and let us support you.
Love n hugs. Chrissy0 -
Starting rads tomorrow to T4 vertebra. Low dose over a long period of time (20 days or so) Then zometa and either AI or tamx. PET in three months to evaluate. Moving forward. No Sx. Hard to believe there was progression after 10 and half years. No matter. Going to kick butt.
Diana1 -
Diana good to hear that you have your plan in order. That's the problem with this disease it is soooo sneaky no matter how much time has passed.
Love n hugs. Chrissy0 -
Glad to hear your plan is coming together, Diana!
I'm frustrated. My second bone biopsy is scheduled for this Thursday. I've already done the simulation and have my new tattoos but they want to confirm that the mets are breast cancer before they start rads. And it's going to take a week to get the results since it's being sent to OncoPath. I've been feeling more discomfort in my lower back and pelvic area.
No one in my family is saying the words outloud, but I'm following the same path as my sister. It's just that I'm doing it a little faster than her since she went 5 years NED before she moved to stage IV. But then she was gone in less than a year. For the first time I'm getting very worried that I'm not going have those years ahead of me to watch the grandkids grow.
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Christy just because your sister didn't have a long time doesn't mean that you will follow the exact same path. This disease is so unpredictable and it can go either way. Hoping all goes well with your biopsy and they get answers for you ASAP.
Love n hugs. Chrissy0 -
Oh girl, you are not your sister. No two diagnoses are the same, that's why they haven't found a cure yet. Your treatment is right around the corner and when it kicks in, it's going to push back any progress the cancer has made. You will feel so much better once you are through this part and settled into your plan.
Warm hugs,
Pat0 -
wish they could start the rad while waiting for the bx. I don't understand why they cant, esp if you are having pain from it.
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Chrissyb thank you for being a voice of strength. I was dx with a single met on my t11, exactly one month after getting my port removed. My back was only a little sore. I wrote it of and my PT put me on an exercise. Fast forward two weeks, went on a lovely walk with my ds 3rd grade class, only to end up in the er with a randomly racing heart. I'm thinking electrolites are off an may need an infusion of fluid. Nope found that my T-11 was dangerous. Bone scan the next day confers. So I ended having an extreme tumor. The CT looked like a para a bit my back. My treatments to date are: tumor removal, t11 replaced with titanium cage, 25 rounds of low rads, and now I'm on my next round of per-her-tax. Even with all this mess, my Mother and I have a trip to Hawaii planned. I read on these boards a seem to find it easier to plan. My MO and I are treating it like diabetes; chronic and controllable. I tease him that I'm going to go through at least three MO's due to the fact that they will retire and I'll still be around.
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Congrats on making it to the trip-planning stage, Fujimama! You've been through so much! My current onc is younger than me so hopefully I won't have to replace him. My first onc retired.
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Fugiimama thanks for your compliment.
Sounds like your planned trip to Hawaii with your mom is definitely something to look forward to. I did a huge 7 and a half week trip to the USA from east coast to west last year and only wish that finances would allow me to do it again........lol.......I have discovered that I am a traveller at heart. I think the secret to dealing with BC and all that it entails is to enjoy each and every day and do what you can to achieve dreams and if those dreams are travel then just do it! And do it when you think of it and don't put it off. This disease can go from stability to catastrophe in a matter of days so don't let them pass you by and leave you with wishes instead if memories.
It sounds like your spine is stable right now and hoping everything else is too.
Love n hugs. Chrissy0 -
hi bone met sisters
started rads this week to T4. so far so good. i guess feeling like they are zapping the cancer gives me a great feeling. i will have at least 20 more rads to the spot. so far so goodl maybe a throat issues but right now not so bad. starting femara oct 15 and zometa oct 23. plan in place. still cycling and doing my stuff. all i can say is zap that cancer and never give up. it can be sneaky but so is treatment. i am shocked as to the advances made since i was dx in 2002. the rads is totally different and so much better. the femara will take care of lost cancer cells. i am so optimistic. hang in there peeps. the road is long but the road is worth it.
keep on keeping on
diana
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Hi diana! Glad your plan is underway and glad to hear you are optomistic! It sounds like A great plan. Zap the cancer, femara for anything else, zometa for the bones. I have been on femara for 2 and half months and seems to be working great and so far I have had NO SEs!! It brought the TM from 116 to 61 so I am optimistic as well that it will continue that way. I wonder how much it will go down the next time, which will be 4 months? It can't go down the same amt because that was 55 and 4 months instead of 2 would be 110 and there's only 61 left. Hmmm LOL
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Go, Diana, go! Those cycling-induced endorphins are working for you. I walked and danced through 25 or so zaps, including to T8. Then went for a bike trip somewhere flat after it was all done. I was a bit wobbly but it felt good.
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Lana....I have a single spinal met as well. I am on tamoxifen and pamidronate. Also radiated for 10 treatments as well. Working good so far. I see my onc. next Friday! Fingers crossed!
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Diana - Glad you have plan in place. Just curious why the wait with Xgeva and Femara. My onc started me on Xgeva and Tamoxifen within two days of being dx. Started 15 rounds of radiation later that week.
Lana - I have bone mets from neck to femur (too many to count) and have 'only' been on Tamoxifen, Xgeva and Lupron. Last tumor markers were great. Had my 6 month PET scan today and anticipate that it shows no progression.
Sonya
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Sonya
My Onc believes not ok to do it all at once. Wanted to wait until half way into rads since I am doing 25 zaps. So femara oct 15 and zometa oct 23.
I found another site Advanced Breast Cancer and have been posting there. One member told me she was stage IV with bone met in 1998 Remission untill 2010....something like that... I can't remember. Any way lots of people out there doing very well.
Keep on keeping on!
Diana0 -
Rosevalley,
Sorry for the late response. I did not see that you were asking questions. I've been on Zometa monthly for 3 years. I got a bit of arthritis in my L knee and requested to get it once every 3 months now. I'm afraid of SE of of too much for too long, but it has does wonders. My bone mets show up as healed lesions now and it greatly reduced my pain. I have not been switvhed to Xgeva because Zometa has worked so well and I'm not sure if Medicare has approved Xgeva yet.
Terri
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Bump.
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Hope everyone is doing well. Just wanted to give an update on my tx.
Second bone biopsy was a success. Especially since they put me to sleep this time. I had the same nurse and I think he felt sorry for me so he made sure I was out before they stuck a needle in me. Thank you, Mr. Nurse!! The path came back slightly different than original. HER2 is still neg but PR changed to neg and the ER was only slightly pos. Original dx had both ER and PR strongly pos.
Had an onc appt on Thursday but since we didn't have the results back from OncoPath he really didn't have much to say except to cover the path report. He is really excited about getting the cancer genome mapped and the idea of doing a trial to address the biomarkers. However I have mixed feelings. On one hand, that is exactly where all this research is supposed to be going. Individualized, targeted therapy.
But I already did a phase II trial with my original chemo by adding Sutent to the regular ACT protocol and that didn't work. I also feel that adding the Sutent is why I didn't bounce back after being out of treatment. I had to have so many infusions to keep my RBCs going and neupogen shots 6 days a week on the second half of the chemo. I think it really did a number on my marrow. So I feel like I know what it's like to be on a trial that did more harm than good. I find out more at my next appt in two weeks.
Last night wasn't so good. Lots of tossing and turning. Finally had to get up at 4:00 and take a pain killer. I've had 4 of my 10 rads but I haven't seen improvement yet. I'm hoping the next 6 will get my lower back/pelvis feeling better.
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Folks,
I've hit a wall. I don't know if I need encouragement, to be talked off a cliff, or what. But after a number of false starts, I'm writing to vent and seek any input.
A PET scan I had in mid-August showed mets to L5/S1. I started taking Tamoxifen about a week before and now I'm two months into the therapy. The primary breast tumor shrunk .5 cm which was good news indeed. But in mid-September my lower back started to hurt. It was bearable, but one day it just incapacitated me and it hasn't let up since. I even purchased a cane for more support. I saw the oncologist who ordered x-rays to rule out fracture--and they came back with no sign of fracture. But the pain hasn't gone away.
The MO wants to seek a second PET scan this week to rule out any progression.
As you well know, it hurts. Yesterday I pushed myself and walked quite a bit (though I tolerated it well at the time) and today is back spasm day.
Cripes, what could it be? If the Tamoxifen is successful in treating the primary tumor, then I just assumed that the secondary lesions would reduce as well.
Anyone else been in this quandry? I know you probably won't have medical answers, but if knowing anyone else went through this might ease the anxiety.
Thanks,
Scorchy0 -
Hello, i just was dxed with compression fracture to L4 and have involvement L1 to S1 or 2. I just went on xgeva and will start another new chemo after radiation to mop up after my vertbroplasty. My bone mets showed up on mri only not even nuclear scan i think because lobular is so sneaky. from now on i want pet/ct instead of the inconclusive reports.or mri. wishing you the best. living on otc pain meds or narcotics is not fun. there was be something better for you.
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Scorchy,
I'm so sorry that you're in so much pain. Hopefully the docs can get it straightened out.
Since I started out as stage III my experience with hormonals was after the chemo and bilateral mast so there was no tumor to shrink. It was to try and prevent mets. Six months of Aromasin had me aching -- mostly in the hands, feet and pelvic area. I told my onc that if I was to continue I knew that I would end up with a cane. He switched me to Tamoxifen and I didn't have any problems with achiness. However the Tamox didn't stop the bone mets from occuring.
A couple of thoughts. Could it be the Tamox that is causing the pain? We each react differently to the different hormonals. Maybe another hormonal might make a difference.
Second thought is why not include a biophophonate such as Xgeva or Zometa to try and strenghten the bones? Seems like it couldn't hurt and it might reverse some of the damage.
Edited to add:
Since Tamox didn't work for me I've been switched to Femara. My fingers are crossed that I won't get the aches and pains that I had with Aromasin. Just like Tamoxifen, the AIs (Aromasin, Femara and Arimidex) have all been shown to shrink tumors in some women.
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Hi scorchy....don't mind venting.... I'm in the icu because of my port. A clot dripped off the tip into one of the chambers of my heart -- I was on tpa drip for 24 hours....and iv heparin. I can't really move by myself because if I fall or trip, I can bleed to death. How nice. Still on the heparin.
Weren't you supposed to get a fasoldex shot or something?
Tamoxifen can cause blood clots....lots. that's one thought. 2. My bone mets were missed bec only pet was run. They now have these special bone scans. There is a very good place in nyc.
Which leads to: how this clot was found....I was sent for a staging workup early - pet and sodium fluoride bone scan. ..
Results came back next day.....the tracer picked up clots outside of my port....leading to omg!!!!
Btw, I hate the keyboard of my phone trying to type in the txt box....it gets weird or something. Slows down...
For months, I complained of hip pain but the orthopedic docs refused to do any mris. Nothing showed up on spinal x rays.
Sometimes need 3t mris to correlate andbe positioned in relation to bone scan. ..
I'm now considered the scoundrel of the ny metro area, demanding my tests be done right & double checked.
Pain like yours need call to onc, and if necessary finding new onc.
Sorry it hurts so much!
I am triple negative for now... I wonder how long chemo goes on to see if it is working....things seemed stable other than new bone met to my pubic bone.
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Hi, so happy to have found this site. I have had mammograms for over 40 years every year and had one in Nov. 2011 which they said was negative. In Jan.. I was having some back pain that went down the front of my leg and had an MRI. Yes, it was bone mets. I had no surgery because it had already spread to the ribs and spine. After 15 rad. treatments and six chemo. I am now on arimidex and once a month Zometa. I don't think I have depression, but I just feel sad all the time. I live in a retirement community in FL. and I am still pretty active for a 74 year old. I have minimal pain right now, but am having a little nausea problem. Anyone else with side effects from Arimidex? (especially nausea) I am just scared. How do I get my dx on this page. Thanks, Barb
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Sending hugs to everyone. It is so hard with the dx and treatment. I am half way done with 25 rads to t4. They are also creating margins on t3 and t5. On femara. Starting zometa 1x month for two years...first infusion oct 23. Thinking really all I (we) can do is the treatment and pray for response.
Hang in there everyone.
Hugs
Diana0
