Bone Mets Thread
Comments
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CanadaGirl,
Have been on Zometa monthly for over 2 years and other than some bowel dysfunction there has never been pain..0 -
Welcome to our board Wandering. So sorry to hear you had mets after being free of all this for a while. But good news about your latest scan! Yeah! You will see lots of powerful women on here persevering through so much but with quality of life each day.
NickyJ and SyrMom- hang in there, it will soon get better, Hugs
CanadaGirl - You are such a caring daughter. Please tell your Mom we are wishing her answers to what's going on and relief for her pain0 -
Thanks canadagirl I hope so too! NickyJ I'm gonna ask my mo about slowing the infusion down to an hour. Hope this helps
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thanks RangerMom!
Macyhen, I hope it helps too. It certainly made all the difference to me. After that first infusion I couldn't see how I could cope with getting another, I felt so bad! But slowing it right down was all that was needed!
Nicky0 -
Nicky & BlaineJennifer ... well, you have a point there, perhaps the stress of a stress fx incr. the TM - I hope that's the cause and not resistance to another tx. See the ortho tomorrow ... I'm guessing they'll put me in a boot.
Meanwhile, the hair continues to shed
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Claritan helped me with se o zometa, I only had bad ones such as fever and aches after first . Give it a try.0 -
Having flu like symptoms after the first infusion of a bisphosphonate is well known. I also had those se's when they ran the infusion too fast. Tomorrow is my last Arimidex infusion!
Caryn0 -
SyrMom, good luck with the ortho tomorrow, I hope it helps.
Caryn, yay for the last Arimedex!! What happens then?
Nicky0 -
boy, was I ever tired. That should be the last Aredia infusion. The Arimidex is forever until it fails.
Caryn0 -
well, the onc told my mom the same thing he first said when she complained about her SEs from Aredia - that he's never heard of side effects being so severe from Zometa. maybe he should come have a read here!)
He is taking her off of it for now and will wait it out and see if the pain and fevers improve. In the meantime he has scheduled her for a CT and bone scan next month just in case. The symptoms are identical to what she felt with the Aredia: bone pain in different bones lasting a few days in each spot and on and off fevers in the 38 to 38.5C region. He also gave her a prescription for Tylenol 3. He doesn't think it's progression from the pain that she has described and because it's been less than a month since her MRI which was fine.
She is on her 4th week of pain and fevers now, though the other aches like her foot and hip are gone and only back pain remains. It's fine when she's not moving but excruciating when she tries to get up or drive or even just stands too long. Hopefully a break from the zometa will give her some relief.0 -
hi canadagirl, nice (sort if if you know what I mean) to see some else from Canada. I don't think your mom should be in that much pain. Doesn't sound like the best quality of life if she can't move without pain. I was the same at the beginning of my journey, I was diagnosed stage 4 May 2011, so my dr put me on a stronger narcotic for almost a year, didauldid. It did the trick while the chemo kicked in and now I only take the occasional T3 and extra strength Tylenol. With all the options out there I hate to hear that someone is still in excruciating pain when they don't have to be. I've also found relief from acupuncture too. Thinking about you and good luck.0 -
Thanks Listee! Other than the pain from the zometa my mom has been doing great. They got her pain under control with radiation almost immediately after the mets were found. She has prescriptions for stronger meds but doesn't like to take them because they make her feel drowsy and out of it. Hopefully the Tylenol 3s will help until they figure this out.0 -
I can't walk upright today, shooting electrical pains up and down spine if I bend or twist wrong, tingling in legs, trouble with BM. Anyone else had this and was there anything that helped. called in to on call doc today and he wants me to go to the ER. I don't want to go as I'm scheduled for MRI's on Tuesday anyway. $150 copay and stuck there for hours, no thanks! I'll just stay in bed till Tues.0 -
I am so sorry you are having this pain! The only time I've had back-related pain like that was when I had a disc problem, long before round 1 of BC. I was given muscle relaxers (didn't help much), vicodin for pain (don't remember that helping either), and a heavy duty anti- inflammatory, which did help some. Alternating heat and ice also helped. The ER copay and wait time are not fun, but if more symptoms show up, or you can't manage the pain, you might want to reconsider. Hope it resolves quickly! And good luck on Tuesday!0 -
Hi All, I was diagnosed with bone mets about 4 weeks ago and have a Consultation scheduled this Thursday in Minneapolis , I don't know what my treatment plan will be but I have decided I am doing everything I was ever afraid of....so my daughter who I am visiting for Christmas this year scheduled a tandem sky jump for me, WooHoo I am so scared but I figure why not what is the worst that can happen So Cancer I am kicking your Ass and having fun!!!!
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sounds like a good plan. Have all the fun you can for as long as you can!0 -
Thank you I will
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Hi everyone, I just got diagnosed with bone mets on the 21st. They tell me I have a fractured rib, although I don't feel it. I also have liver and lung mets. Does anyone know when Breastcancer.org was originally put on the internet? I pray for us all.0 -
Also, I have gone to my profile to add my latest med, Faslodex, and it doesn't show up. Does anyone know what I am doing wrong?0 -
Did you change the "private" box to "public"?0 -
Hi Wandering,
My experience with tumor markers dropping has been exactly the same. I wish my MO would do another PET scan to see what is happening or at least a breast MRI (I still have my primary since I had extensive bone mets right out of the gate) but he does not believe in it and only follows tumor markers - no imaging. So, sounds like you are right on target. I wish my team would do the imaging so I could hear that good news of "no progression" or even that the mets are "going away or less detectable". They just don't seem to think it is merited -- grrrrr.0 -
Hi Rangermom,
I had pain and weakness in my leg during the summer. when I called, the MO also wanted me to go to the ER. I refused for reasons similar to you and insisted I just wanted them to take care of it so they made me an appointment for MRIs the next day. It turned out I was OK (no issues to spine). BUT they explained that if there had been something wrong with my spine - time is important so as to not have permanent damage - so if you have weakness (and I don't know if your tingling counts) it may be worthwhile for you to do the ER thing - incase treatment now means a fuller recovery than treatment in a few days when you have your appointment. I don't know a lot and am only sharing my experience and what they told me.0 -
rangermom,
I am so sorry that you are having such a hard time.
I agree with Hollander. Take care of yourself! I hope you don't have to go to the ER, but if things get worse....
Good luck on Tuesday!0 -
It's so strange that some do tumor markers, some do imaging and some do both. I wish there were more consistency among mo's. My mo doesn't do tumor markers but does do regular imaging.0 -
It's funny I saw a woman oncologist who said she didn't believe in doing tumor markers or regular scans unless your symptoms warrant it. She was rather obnoxious about it. I said what if the tumor markers do in fact agree with scans as in my history? She said she wouldn't do tumor markers, didn't believe in it and it was her practice. Needless to say I didn't go back. (Thanks for the heads up!) I have only had 3 pet scans in 7 years and no other bone scans or stuff. Ah well.. to scan or not to scan markers or not.. hmm I guess it doesn't matter in the long run.
I have been having a miserable time with sciatic pain, pelvis aching and it just aches and aches to sit for any length of time. I can walk, go to the bathroom but I may have to go in and get investigated. No doubt nerves are being compressed and squawking about it. It used to be an on and off again thing.. not any more, just on. PIA.. literally.0 -
It is weird how some MO's scan and others don't and some use the bloodwork and others don't.
A consistent rise in tumour markers alerted my MO that something was going on. So last fall he started scans - bone, ct, mri and then pet scans - to figure out what it was. I was scanned from Sept to Feb before a biopsy was done.
It turned out to be mets but the funny thing is the tumour markers went down (without treatment) just before my first pet scan.
Then they rose just before radiation (July) and then went back down after radiation (Sept).
A friend of mine with no sign of mets has always had tumour markers outside the normal range and her MO is not concerned.
Not sure what's happening with mine now since my MO asked me not to go for bloodwork until he see's me again to follow up on the switch from Tamoxifen to Anastrazole. I see him on Tuesday afternoon.
I'd love to have bloodwork to see if the tumour markers are still down and maybe a bone scan to confirm that the radiation worked....0 -
Hi Rosevalley,
I agree this is all pretty strange. If they go only by symptoms, it seems things could get pretty bad before they start treatment or change the treatment to something that works better. I was told that tumor markers are informative for some people and not for others, also that the absolute numbers don't mean anything - just if they are stable, trending up or trending down. My big concern is that something could be starting somewhere new and the markers still overall going down because it is in so many places in my bones that if it were going down there but coming up in say my liver ... the marker might not show it until the new spot was really well established. OK, I know, it is late at night and for some reason I am just freaking out. But, I just wish they'd take a look to confirm that everything is really getting smaller the way it appears from the markers. Probably my agitation is all because they did a blood draw on Thursday and the results are not back yet because for some crazy reason they send them to Utah for analysis (CA27.29). Is that the only place in the country they can do it? I am on the east coast for goodness sake.0 -
RangerMom, I've had what you are going through and I went to ER and all they did was give me a big dose of morphine. What all my cancer doctors say is that I have Neuropathy, which causes tingling in spine, down legs and into feet. Many women who are in treatment this can occur at any time. I take Lyrica for such pain and tingling, others take Neurontin I believe it's called. I tried that but didn't help but Lyrica does. Since being on the medicine I get break through pain that keeps me down once in awhile but those days are few and far between. I hope you feel better soon.0 -
Rangermom, so sorry for what you are going through. Anything with my spine scares the wits out of me as I have mets throughout. The tingling up and down, the bowel issues and unable to stand can all be related to the nerves being affected and worse case possible fracture of vertabrae or compression. The concern is the spinal cord and having that damaged. I do not say this to cause you more stress, just that you need to know how fragile the spine can be. Hopefully this is all neuropathy & nothing more serious.
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RangerMom, I hope you are feeling a little bit better today. I do not have bone mets in my spine, but I did herniate a disc a few years ago and it was the most excruciating pain I had ever experienced. I had the tingling and sciatica. I actually had an MRI to confirm whether it was herniated or still bulging. I hope your MRI tomorrow gives you some answers.0
