Bone Mets Thread
Comments
-
Kim, what are you trying to ask or tell us? I don't understand your post.....'white in a PET scan'. Do come back and talk to us.
Love n hugs. Chrissy
0 -
Hi Kiwi and Vadre,
Thank you for your posts regarding my Zometa reaction. After this last time I was thinking of just refusing it altogether. I'm feeling better now, but I have lingering pain and I am easily fatigued. I'm not sure the benefit is worth all of that. I'm going to wait and see what my scans look like that I'll be taking on the 3rd and what my doc thinks on the 9th. Just glad that week of side effects is over! Whew! Thanks again!
0 -
Glad you're feeling better Skylotus!
0 -
New to bone mets, just got the call yesterday to confirm. Very small area in the right hip. My question, my onc is giving me a choice.
Xgeva with Feslodex or Xgeva with Aromasin.
Any feedback or suggestions would be great. I have only read up on the Feslodex and I see some of you are doing all 3. No pain, so he doesn't want to radiate, which I must say, I am glad about that. The mets show to be ER 80% PR 0%.
0 -
Hi Goldie,
A mixed welcome as usual; we're sorry you're here but glad you've found us. I had one 2 cm bone met to my upper femur. I did a different combo of meds (Arimidex and Aredia) so can't comment on your choices but do have a comment on rads. They are not given only for pain relief but also to "kill" the met i.e. render it necrotic. I had no pain but did have rads x15 to the upper femur. That was close to three years ago. The met is dead, dead, dead and I have had no progression. I did, recently, switch to Femara because the se's from Arimidex had begun to get quite bad. Wishing you the best.
Caryn
0 -
Oh Lori no!!! I am so sad to see you join this group but welcome. Can't help with experience but I do know a lot of women taking the Xgeva with Aromasin and doing well. Sure hope which ever you choose gets rid of those mets and gets you to meet up with NED pretty soon.
Love n ((((((((hugs)))))))). Chrissy
0 -
I'm so sorry to hear about your met, goldie. I've been taking Faslodex/Xgeva for three years and it has kept my extensive bone mets stable. Aromasin failed me, as that was my first therapy after initial diagnosis. I believe they each work differently- you might ask you onc to explain that to you, but my understanding is that Aromasin and other AIs work to reduce the estrogen in your body and Faslodex blocks the estrogen receptors in your tumor cells. The nice thing is that if one fails, the other may work well for you.
Of course, with Aromasin you take a pill every day, and with Faslodex you need to come in and get your shots. I had more side effects with Aromasin (joint pain), but everyone is different that way.
Good luck with your decision. Again, so sorry you have to be in this position. {{{hugs}}}
0 -
Caryn, I was not told a size, just that it's very small and I did NOT light up like a Xmas tree from my scans! He doesn't want to do rads now, in case it's needed later down the road. I did 5 years of Arimidex. Glad that met is DEAD DEAD DEAD!
Ya, hey Chrissy! But what a great group of gals to be surrounded by, here on BCO. Wanting that date with NED ever so much, even as much as he cheats
.Sandi, that is a great explanation, and I will def. run that by him. A pill would be much nicer, but I want what's best.
Thanks for the welcome and the hugs!0 -
Hi, Goldie ~ No advice since I'm on Anastrozole (with Xgeva recommended but not yet started) for more diffuse bone mets. But I wanted to welcome you and tell you I'm sorry you've found yourself here, but very glad to hear that your met is very small, and hoping you get a complete and very long response from whichever drug combo you decide on. (((Hugs))) Deanna
0 -
hello Goldie, I'm an Arimidex/Zometta gal so I don't have much to offer advice-wise. You have already taking a tremendously positive step in connecting with this amazing group! We welcome you and are always here for support, advice and general all-round silliness!
Skylotus, I'm glad you've recovered some from your Zometta infusion. I have always recovered after a few days. It helps to make decisions not clouded by pain. I'll be thinking of you as you have scans and talk with your MO. So many decisions. Take a deep breath or two and allow yourself the space to make the decision that is best for you.
Virginia
0 -
Goldie I did the xgeva falsodex not too bad, went in once a month for the shots. Much better than infusions Did you get your teeth checked to see if you need any invasive dental work before you start xgeva? You must see a dentist before the xgeva to avoid problems later.
0 -
Hi Goldie,
I'm on Femara and formerly on Zometa, so no advice other than to echo what NY Chutzpah said - get your teeth checked! I had a tooth crack when I was on Zometa and ended up with ONJ which was beyond painful.
Welcome to the group. Sorry you're here, but glad you found us.
Terre
0 -
Gosh, I read where you should tell your dentist that you are on this, but didn't know I should see him prior, I do go regularly. In fact, might be having lunch with our hygienist Sunday, so I'll run it by her. I thought Xgeva was to strengthen the bones!!!
I think I've made my decision to go with the Faslodex and Xgeva. Reason being, the Aromasin can cause bone damage, and I already did 5 years of Arimidex, which does the same, and I already show some signs of osteoporosis.
Currently I feel awesome! No pain, nothing. I feel "normal". I hate the thought that it is going change once I start treatment! Ahhhh, the gift that keeps on giving!
Thanks again all for your input. I would much rather get advice from the gals on this website, than any other doctor.....jes sayin! Have a good weekend when you get to it!
0 -
Yes, xgeva and it's bisphosphonate cousins are bone strengtheners, but a se is ONJ , osteo necrosis of the jaw. Not a common one, but definitely one your dentist needs to be made aware of. Spontaneous femur fractures can also happen after long term use of these drugs. I took Aredia but stopped after two years because my mo was seeing more se's in her long term patients. Ah, bc...sure does give us lots to think about.
Caryn
0 -
I thought I would come in here and share a news story that just appeared on Yahoo. This is some wonderful news for women whose bc has metastasized to the bone and for children with osteosarcoma as well. There is always hope!
http://news.yahoo.com/video/research-dogs-bone-cancer-may-214652865.html
0 -
Thanks, BigD! Just finished reading about this. Super of you to share!
0 -
hi everyone!! I have not been on for a while!! (Busy with work and pain, lol) stage 4 dx 12/13 I have mets to sternum which I had RADs on in January and pain gone!!some nodes involved! I then had hysterectomy now Aromasin (SE joint pain, muscle stiffness getting better). I have two questions:
1. I had a cold couple weeks ago and got through it great but the lingering cough for a few days after and my sternum has pain again. Cough gone but sternum still hurting somewhat!! if I had RADS can the tumor/pain come back in same spot?? If so can u have rads in same spot again???
2. Unrelated, but I was wondering, I was off work for 4 months 12/13-4/14 returned with no time left on the books and FMLA exhausted. I am only allowed 5 sick days a year and I only get 3 hours of sick leave a month. I am scared of loosing my job if I need to miss anymore time for pretty much anything. And my employer doesn't allow time off without pay. Anyone know if being a stage 4 pt are we covered under any ACTS? ADA?? I would appreciate any impute.
Thank you so much !!
Katie!
0 -
Hi Katie, for your first question, once you have had rads in one place you cannot have rads again in that place. As for your pain I think you might find that your coughing will have disturbed everything in the sternum area and should after awhile settle again. It is most unlikely that the tumor will come back as the rads will have killed the cancer cells in your sternum.
As for your second question I'm sorry I can't help as I don't know your work rules and aid systems. Hopefully someone with that knowledge with pop in soon.
Love n hugs. Chrissy
0 -
Hi Chrissy
I'm responding to your response about rads. I had rads to my hip dec-jan 14 and starting on tues I am going back and they are going to do rads to the same spot. Knowing this is why I am now curious about your response of not having rads to the same spot. If this is true I'm now concerned as to how my RO will do rads to my hip again? Can u or anyone provide more detail on the once go round rad rule per se?
Thanks
Margie
0 -
Hi Margie I have been told that once an area has been radiated it cannot be done again but if the radiation is targeted ie a spot rather than an area, then radiation can be targeted in the same area just not the same spot. I do hope I have explained that so you can understand. For your hip It sounds like your first round was targeted so there is no problem with this next lot.
For myself, as an example, I had the whole upper arm radiated so I can never have that area radiated again.
Hope your treatment goes well.
Love n hugs. Chrissy
0 -
@ Katie, w/Stage 4, you can apply for SSDI. Don't know if that helps, or about other benefits...
0 -
With Sterotactic radiation they can go in an radiate that area again. At least that's what I was told by my RO.
0 -
katie, like someone said you can apply for SSDI which is Social Security Disability Income. It is based on income earned through out life and Stage IV cancer is one of their "priviledged" categories so it took only 4 months for me to receive benefits and while the disability process was undergoing I received SSI benefits which is based on current income. After two years on Disability I will qualify for Medicare right now I have limited health insurance but other than that I am living on disability and supporting my daughter and grandson. I miss work though, I wish for you to find a solution soon.
Aurora
0 -
Katie, I had pretty much the same experience as Aurora, getting approved for disability almost immediately. It isn't a lot of money, but it is deposited in my bank account every month, and it helps. I miss working sometimes, but honestly, I know I just couldn't do it with the treatments and medications that I take. I am scheduled for CT and bone scans in a couple of weeks. I am praying that the meds are doing their job and there is no progression of the bone mets.
0 -
thanks everyone!! U guys are the best!! I see my dr and will let u know what he says about my sternum and if I could ever do rads again. I had talked to him about ssi a while back but he wants me to work for as long as I can but my boss is putting me in a tough position. I live in CA and would get SDI until SSI approved. I could live on it. I am only 40 but have 25 years pd into SSI so not a bad monthly benefit.
Thanks again ladies!!!
)0 -
thanks everyone!! U guys are the best!! I see my dr and will let u know what he says about my sternum and if I could ever do rads again. I had talked to him about ssi a while back but he wants me to work for as long as I can but my boss is putting me in a tough position. I live in CA and would get SDI until SSI approved. I could live on it. I am only 40 but have 25 years pd into SSI so not a bad monthly benefit.
Thanks again ladies!!!
)0 -
I had a thoracic MRI today...which I had a year ago. The ro said it is most likely not metastasis because of the location of the lesion...not a typical spot for mets. But I have so much pain from my t10 and down (I have confirmed met in my l5)...so today during the MRI...wouldn't you know that I had no pain in my thoracic area...all the pain was in the lumbar region. Augh! I just don't want to be in pain period and I hate taking so many narcotics...I have had to increase the break through meds by 30mg! I'll let you know what I find out.
0 -
ok so I went to the dr today. He stated that a necrotic tumor (from rads) can NOT grow back, however, if you have radiation done on a specific area and pain returns it may not have taken to the radiation (which is not to common as RO are very accurate). So I asked can u have rads done again? He said that is a question for the RO because it depends if you have had the maximum amount "allowed" for that area. He said mine is dead and if I have pain there (which is gone now, it was sir from cough from cold I had) it could have been from the scar tissue or possibly new tumor above or below. Soooo. Really if the rads killed it, it should never come back and if not completely killed first time additional may be given depending on how much given first time around!!! I learned a lot today!
)))0 -
thanks Kate for update. Today was my second rad treatment and I asked the dr the question yesterday and they said exactly what your doc told u
0 -
Hi, every one . I haven't been around for a while.
I've been reading the posts above with great interest and a lot of confusion .
I have mets in three parts of my spine and an involvement in a rib. The rib had spontaneously fractured and healed before I was diagnosed with metastatic cancer. Originally the rib was a pulled muscle - while the pain in my back was arthritis.
I had 5 doses of rads to T4 ....T7 when I was first diagnosed with mets. I had been admitted to hospital as I couldn't walk with out falling, then suddenly became paralyzed due to spinal compression.
Since then I'v had rads to T2 and my lower lumber region for pain relief.
Here's my confusion. The rads to my lower lumber never worked and my oncologist has said they can try again. That my pain is caused by the cancer. Now I have pain in the T4 ... T7 area again - the oncologist says she doesn't know why as there is no progression in that area.
Now , does that mean I still have cancer in my lower spine only - or as my oncologist reports the cancer is stable.
0
