Bone Mets Thread
Comments
-
thank you ladies!! If it doesn't get better by next apt in two weeks I will ask to switch!
but first I will try Claritin!!0 -
Kate, Good luck , I hope it helps you! Redroan
0 -
Question,
I recently just started my first round of zometa/faslodex. It seems as thought the hip pain is worse and the rib pain is a lot more painful than before the meds started. Is this normal? Am I just being overly paranoid?
I am off work currently with a return date of mid May so perhaps I am expecting miracles until then? If not for the need for insurance I would love to stay home. Can retire in November but can't get medicare for another 3 years. I work 12 hours shifts as a labor and delivery nurse so long hours are a concern plus my employer seems to be on a trend to find reasons to dismiss those of us who have 20+ years, are on the top end of the pay scale and are full time. Doesn't make for a good working relationship.
How long does it take for the pain to subside at least a little. My onc said the meds would help but no relief as of yet. I realize there are some side effects but what has worked for anyone else would be greatly appreciated.
0 -
Donutswife sometimes we get what is called tumor flare and it is the reaction of the cancer when the treatment is attacking it. It does get better but for each of us the timing is different. Can you ask your doc for some pain meds to get you through until things settle for you?.......hopefully that will be by mid May when you are due to return to work.
Love n hugs. Chrissy
0 -
donutswife, if you only plan to work until November, just put it in your mind that you will get there one day at a time. That is not too far away, and it's surprising how fast time goes. There are lots of employers who like doing the same thing as yours, trying to get the higher payed employees out. I work in a school, and they're always trying to convince the senior teachers to retire. My advice is to not take it personally, it is simply the way business works, even tho you're in a hospital setting, it is run as a business. Certainly you put many long, hard hours in and it'd be nice if your professionalism and dedication were appreciated, but these days that can be hard to come by when the name of the game often seems to be 'how to cut corners'.
Tho I only work part time, I considered quitting upon getting a stage iv diagnosis but I was unsure what to do, so I just kept going to work. I work as an instructional aide at an elementary so I get summers off, that does help. However, now it's been over three years since that diagnosis and I'm still working and glad that I am.
0 -
Have you tried claritin ? It's supposed to help with the joint and bone pain.
0 -
Thanks for the info, that makes sense. Just not use to having some limitations at the present :-)
0 -
Hi All! I'm on the A/A combo for stage 4 and Zometa for bone mets. I had an infusion on Mon, and it knocked me on my tush for feeling like crapola. Starting to feel human again, but having issues with my left hip, as in limping and pain. Is that normal? On a heating pad now, but it seems the pain is deep inside. Thanks..
0 -
skylotus, I can't give you any input on the A/A combo or if your hip pain could be related to that, although in general, aromatese inhibitors do often cause some joint pain. But based on my own recent experience of limping around in pain for several weeks and told by my onc it was simply b'cuz I had extensive bone mets -- then finding out I actually had two serious fractures (femur and pelvis) -- I would say, if the hip pain doesn't improve, ask for some sort of imaging to look specifically at that left hip. All it took was a few simple x-rays when I finally went to the ER in agony to see the fractures that none of my docs had even thought of as a possibility. Hopefully, this isn't what you're dealing with, but it can happen, so don't accept pain as simply part of the mets -- especially if it gets any worse and impacts your mobility. Deanna
0 -
PattyPepper: Yes, I was stable on Femera for 4 years without progression. Will be doing another PET after 3 months on A/A. My back has been hurting pretty bad, so I don't expect too much good news. Will find out this Fri.
Terri
0 -
Hi Skylotus,
I was on Zometa infusions for about 6 months and they knocked me on my behind for days at a time. I would concur with Deanna - don't live with the hip pain; get it checked out.
Good luck!
Terre
0 -
Teri - wow that is awesome. Very encouraging. Thanks. Hoping scans don't show progression for you on Friday.
0 -
Hoping for good news for you Teri! I had a lot of back pain and thought it was recurrence, but it's apparently Femera pain. My doc said that the spots that hurt (on my back) are typical for Femera users. And my bone scan was clear. Hoping of the same for you - although the achy back sucks.
0 -
I love seeing articles like this.
http://www.rdmag.com/news/2014/04/physicist-creates-new-nanoparticle-cancer-therapy
New technology rocks!
0 -
Sky, I lived with hip pain for six months, thinking it was related to my treatment. Oncologist sort of brushed it off, until I insisted on MRI. It showed that my hip was bone on bone, arthritis. Ortho doctor said I need a hip replacement, but could not do because I have bone mets. Instead I am doing physical therapy, and honestly, it is much better. Before I could barely walk and was uncomfortable all the time.
Maybe you should investigate further, your pain may be from something else like mine. I wish I had not waited so long to get relief. Let me know how you are.
Wilsie
0 -
Are you doing aquatic therapy? I had a lot of trouble walking last summer and finally convinced my doctor to give me a scrip for PT. It made a world of difference. I started in the water and they gradually moved me to land. I still go back and use the facilities as an aftercare client (no therapist). I find if I go regularly no pain walking, if I slip up - it starts to come back.
0 -
no aqua therapy. I am amazed that it's working so well. I will never take normal walking for granted again. I do a series of exercises and then the therapist "stretches me out". I am also trying to do the exercises at home. Can't believe I waited so long.
0 -
Has anyone gotten new from NickyJ since April 3rd? Hoping surgery and PET scan had good outcomes and thinking of her!
0 -
well...I had CT & PET scans, and MRI, all with contrast on Wed. Doc is really happy with reports. Everything is "stable". Although I do have more cancer on my bones, but no fractures or anything. So, I'm thinking it was the Zometa afterall causing all the discomfort (read pain). So, I'm going to be getting a shot from now on. And staying on the A/A combo for now. And we will see what my tumor markers look like next month. I guess I just have to settle in and accept this is going to be my life. Sigh.
0 -
Congrats on the pretty good news, Skylotus! Happiness is no fractures and "stability".
I know the Zometa knocked me for a loop; glad it was that and not progression.0 -
Hi ladies, can y'all tell me about Zometa please? It seems everyone takes it in conjunction with something else. I am only on Arimidex... ~Amy
0 -
Zometa is a bone strengthener. So is Aredia (Pamidronate) and there are some others. There had been some preliminary research that indicated, that in addition to it's intended purpose, it created an inhospitable environment in the bones for cancer growth. For the most part, this never panned out beyond early research as far as I know. Additionally, ONJ and spontaneous femur fractures are possible unpleasant se's, though not wildly common. Many mo's are taking a more conservative approach toward using these drugs as of late. I received 16 tx spread over 2 years (Aredia) instead of the 24 as originally planned. My mo said she was beginning to see more of the fracture se's in women who had been on it for years. BTW, these are the same type of drugs used for osteoporosis, though the dosing may be different.
Caryn
0 -
Amy,
I've been on Zometa for just about 5 years. The last 2 years I've reduced the dosage to every other month. I have not gotten bad SE's from it and it sure did strengthen my bones. I've recently got 2 more spinal bone mets that are affecting my lower back. I may radiate them.
Just know that Zometa does not fight cancer, just strengthens your bones.
Terri
0 -
Terri, I'm sorry about the progression. I hope radiation or some other treatment can blow the buggers away.
As for Zometa, Dr. Gralow mentioned something about bone strenghtheners helping kill/slow down cancer cells by changing the bone environment (around 59:00, https://www.youtube.com/watch?v=uFhO6WWN4hs) in her talk at the ongoing LBBC conference. In other studies, it looks like this inhibition happens mostly for postmenopausal women or women with ovarian suppression/removal. Amy, since you are in the latter category, I would ask your doctor about a bone strengthener at some point. I had Zometa while on Femara, but I had pain on the combo and was happy to progressively stretch out the time between infusions so my last infusion was after a two-year interval.
0 -
My onc started me on Zometa in 2006 when I was stage 3C in hopes of preventing progression to bone. That was an off-label use since at that time it was only approved for stage IV bone mets. I started out having an infusion every 3 months, then every 6 months and then went to annual doses. I had 11 doses total over a 5 year period.
There were subsequent studies to determine whether or not Zometa played a significant role in preventing bone mets. Initial study data was very hopeful, but later studies did not support the same positive results for using Zometa as a significant preventative for bone mets. The latest study data, however, did note a significant statistical benefit in a subset group of women in the previous studies. This was post-menopausal women who were post menopausal for some years prior to the start of their Zometa treatment.
I had been put into "chemo pause" at age 47 with my first Dx of BC in 2000. My Stage 3C ILC Dx with 23 positive nodes came 5 years later in 2005 at age 52. I have now just recently become stage IV with mets to the nodes in abdomen, chest and neck but it appears so far that I do not have confirmed bone mets. My CTs show a few suspicious sclerotic lesions, however the full body bone scan with radioisotope says no active bone mets. I believe that Denosumab (Xgeva) is now the bisphosphanate of choice based on more recent study data for bone mets. http://www.ncbi.nlm.nih.gov/pubmed/22975218
0 -
Thank you for posting Dr. Gralow's talk, Heidi. Very interesting and informative!
0 -
Thanks everyone for the great info!Linda Lou, you mentioned that your CTs show a few suspicious sclerotic lesions, but body bone scan did not... I recently had a CT that noted two additional lessions and my MO said the CT "reads differently" when I questioned it. I found that hard to believe, but reading this gives me hope that they may not be new spots. We did schedule a bone scan in two weeks to be sure though.
0 -
CajunQueen, here's HOPE that those spots are nothing!
0 -
Can anyone tell me how long to expect the tumor flares to last? I just had my second dose of faslodex and a day before the pain started up. Pretty intense but has subsided a good bit now. I am hoping this is a temporary thing, am I wrong?
0 -
Uh oh. I just got the news that my tumor markers went up
31.8 points! I am on my first treatment still, Arimidex. The dr. put me
on that June 28 2013 and the markers came down every 2 months when
tested, and the PET scans got better. They never got to within normal
range though. In Feb. they were 134, now they are 166. I am seeing the
onc this Friday for my normal every 2 month visit. The nurse told me she
talked with him today and he said he will discuss this with me on
Friday but he expected them to go up at some point, and that they
fluctuate, up, down, etc. and he still thinks I'm "stable". HUH? Down is
good. Same is stable. How is UP stable? He won't change treatments
until I get a 2nd test done in 2 months. Is this normal??? Should I see
another onc? The problem is in my area, one hospital swallowed up many
others and all the good doctors. So another opinion will just be from
another dr in another group but all under the same mega group. Help. Has anyone had their tms go up and then down? Doesn't this mean my treatment failed?0
