Bone Mets Thread
Comments
-
20130502?
Bisphosphonates are bone strengtheners. They are given to patients who are taking AI's since the AI's suck every bit of estrogen out of your body thereby fast tracking you to osteoporosis. So, the bisphosphonates are given to try to prevent osteoporosis. The idea that they created an inhospitable environment for cancer growth never really panned out, though some early studies indicated that might be true.
Caryn
0 -
I got new bone lesions after 4 years of Femara & Zometa. I was switched to Aromasin & Afinitor but staying on Zometa. Caryn, I believe you are correct that Zometa is not a cancer fighting medication, just a bone strengthener. It has helped with my bones over the years.
Terri
0 -
@NYCchutzpah: how do you get the Amgen card? On the website they talk about enroll long a card and seem to assume you already have one. The registration page looks like it is for doctors. Do you have to convince the hospital to sign up? My insurance changed January first and my next Xgeva will all begin my deductible which is now up to $6000 so I would like to enroll in their program.
0 -
Yes! There had been some evidence that bone strengtheners created an inhospitable environment for cancer, but longer term study seems to indicate that this is not the case. Some mo's don't explain this to their patients, so there is still the belief that these are anti- cancer drugs.
0 -
@ibcmets: you are inspiring. I hope I can go as long on just femara and Xgeva. Did they monitor your tumor markers all that time? How much do they bounce around (ie what constitutes a significant change?)? Sorry to ask all these questions. Sometimes I just find I need reassurance from you guys my fellow travelers in bone met land.
Has anyone heard from Chrissy lately? I think she was visiting her daughter and doing scans or some kind of testing.
0 -
@20130502 here is a link to a page for patients and how to enroll in the Amgen program
0 -
http://www.youtube.com/watch?v=ctsGf1tgpjA
A meta analysis involving 20,000 or so patients showed that in the low estrogen environment of postmenopausal women or premenopausal women with ovarian blockade there are survival benefits to zometa and Dr. Gnant believes this will be the standard of care for such women. This is a very important group so I hope this fact won't be lost in the shuffle. Like any drug, even Herceptin, it can stop working, even for low-estrogen women.
I started on Zometa when I started chemo, continued for years but tapered down the annual dose. My bone density measures are better than they have ever been and next month I will be 6 years NED. I'm on Tamoxifen now so won't be needing Zometa again, I don^t think. Tamoxifen strengthens bones is what my onc told me. As Dr. Gnant stated the bone environment is seen to be important. The stronger the bones, the less hospitable for cancer. So maybe when Zometa or any other drug is no longer strengthening but making bones brittle then it^s time to stop it. Just a guess.
0 -
Elisimo, good luck on Xeloda. Hope it's like Femara again for you.
0 -
I would be curious to know what the standard might be for how often Zometa should be administered. I've been getting a monthly iv of Zometa for three years. Some women say they've been switched to getting it every other month, once every three months, twice a year.
0 -
I'm on the once a month Zometa IV infusion too. I've only been doing it since June 2013 so maybe they taper off after being on it for a long time. I don't usually have a problem with it except for the crazy strong bone ache for a week afterwards.
0 -
I don't think there is standard for how bone strengtheners are used. I do believe that many mo's are using them for shorter periods of time as the risk of femur fracture increases and it appears that it has no anti cancer properties. I was originally supposed to have 24 monthly Aredia infusions but ended up with 16 over the same time period.
0 -
Following dx in 2012 I was on monthly infusions of zometa for six months, now I have it once every three months.
0 -
Hi 201305.....,
Many of you ladies speak of markers and the numbers are up or down. I have no clue of
What this means. I forgot to ask my onc. about this because she has never used either terminology
With me.
I was originally dx with colon cancer and they said that is not where it originated so with further
Testing the bc was discovered. I had part of the colon removed in surgery and the colon is suppose
To be clear. That was Sept.2013. So, the scans I am having in Feb. is to recheck the colon, the bone density test, and a check to see if there has been any shrinkage in the breast tumours. Chemo
Or radiation are not in MY plan at all. I want the best quality of life I have left. Once the hormonal
Drugs stop working it will be Gods decision as it is anyway, how the saga will end.
Don't misunderstand me, I have one daughter, my son-in-law, and 3 yr old identical twin grand
Daughters that I live for. I do not want to have them change their busy lifestyle to care for me
On meds that harm even the good cells or rad. that can affect the heart etc. The family basically
Moved in w/me to care for me after colon surgery and for work and their schedules it was hard
On them. Even though they never complained. I am widowed and I have had a full life no regrets.
So many young mothers on these threads my heart cries for them. I just want all young families
To live life to the fullest for as long as they can.
Sorry, I didn't mean to write a book📖.
Wishing all a pain free and Blessed evening. ((hugs))
Barb
Barb
0 -
Not all mo's use tumor markers as they are not accurate for everyone so may not provide useful info. My mo does not use them and that is the case for quite a few of us on bco. Funny how families are different. After my bmx and collapsed lung, which required a month with a chest tube at home, my family couldn't do enough for me. When the AI's stop working, I will try chemo (have had rads to bone met already), although I will reach the limits of what I'm willing to do at some point. My children will be the ones to insist I keep going and will not mind changing their lives for me. After all, I cared for them as children, they feel very strongly that they need to care for their parents as they age or become ill. I may have to do a bit of arguing with them when I decide to stop tx. Take care.
Caryn
0 -
Those of you have had or are on Abraxane, Did you loose your hair ? and if you did how long did it take for it to go?
Redroan
0 -
Hi girls! I'm finally home......thank goodness. It has been a week away getting a whole heap of scans and then having to wait an extra day to see my doc as he was operating all Thursday. The upshot of all the scan is no progression of BC just major progression of my arthritis..........Yay for arthritis!.......lol. It still does not explain the pain I have in my neck and arm so am going down to the city again on Monday week for an MRI.........doc is thinking nerve impingement in my neck somewhere that the CT and Bone scan didn't see.......sigh......if it's not one thing it another but hey! I'm still breathing and I'm still walking albeit with a bit of a hobble but I'm doing it!
Love n hugs. Chrissy
0 -
hooray for no progression, Chrissy! Who ever thought we'd be grateful for arthritis?
Caryn
0 -
20130502: Thanks for your comment. I admire women here dealing with all of this for years. My onc does not concern me w/ tumor markers because they are not accurate for everyone. In fact my last bone progression, all my blood tests were normal. They only found out by a status PET scan. I never knew what my tumor markers were.
MrsM: My onc checks me well. zometa has done very well for me to strengthen my bones. If I had any onj problems or fractures; he would take me off. I guess we go with why change things that are working. My only concern is that Medicare is allowing 3 PET scans per life since June 13 and my onc wants a status one every 6 months. They direct doctors to get them approved if more than 3 by calling an administer for your area on medicare. Hopefully, us stage IV gals will be approved for tests we need.
Chrissy: I'm glad it's not progression. I also got early arthritis from AI medication and was treated by orthopedic doctor. He may have given me a cortizone shot & directed me for physical therapy. A year later, I'm not getting so much pain anymore because it was early arthritis and I'm trying to exercise my knees to keep them strong.
Terri
0 -
Teri, I had arthritis long before BC so am a sufferer of many years standing. For the most part I'm pretty good but there are some areas that are really not good at all........I have already had one knee replaced and need to line up for the other and there is not much that can be done for the tiny bones in my feet that are riddled with it so I hobble when I get up and some days I can barely stand but I just keep pushing on and doing what must be done.
I was more concerned about the pain in my chest, neck, shoulder, sternum and lung and that's what has prompted my doc to order the scans but in all those places I have some old but also a lot of new arthritis.......oh and the lung is chronically inflamed in the central lobe.......that also has been there for quite a while but again has gotten bigger and explains my loss of breath at times.
Alls good though, I'm still here!!!.....lol.
Love n hugs. Chrissy
0 -
Chrissy,
I'm so leased to hear its (just) arthritis! Only here is that considered to be really good news LOL!!
I do hope though that they get to the bottom of the pain and that you can get some relief. I understand the sigh over more tests - I have another MRI and bone density scan lined up for next week. Ever feel like you're going to glow in the dark??!!
Nicky
0 -
Chrissy, glad to hear no progression and hope that you find relief for the arthritis.
ibcmets, it doesn't sound like Medicare is dealing with reality. Three scans per life? How did they come up with that number, pick it out of a hat?
0 -
New symptoms pain starting at ankle, then shin, then knee, then hip. My hip has been bothering me since June, but CT and bone scan showed no new progression, that was Oct. Also, I could hardly get the energy to drag myself to grocery store. I am not prescribed pain meds yet. so, I am bummed out and feeling sorry for myself dont want to worry dd, and I have CT and labs next week. Seems like I usually start the "worry train" before checkup. Ok, I am through whining, and already feel better telling someone.
0 -
yes, lost mine, got tired of cleaning up my own hair and shaved my head
0 -
Redroan, yes, I lost my hair with Abraxane. Granted, I didn't have much to lose aecause of the TAC I took 6 mos before.
0 -
Please help me. Had biopsy of node in left collarbone
area last week. Found out Saturday it tested positive for breast
cancer. Had bone scan this morning. Just found out it's in my bones,
multiple areas: left hip, right illiac bone, right shoulder girdle,
right humeral head (right upper arm), lumbar spine, right femur, left
humerus (left upper arm), pelvis & both femurs. Not sure of
spelling, I was just typing as she was talking. Now, I'm freaked. This
is NOT good, I know enough to know that. I've been having so much pain
& she said this is why. I see my onc Friday & have already
requested a PET scan. I'm scared, very scared. Can I live with it in
all of these areas? I know there's going to be treatment, but I've
watched women go through all of that & not last long at all. Is
there anyone out there who has it in all of these areas that can help? Please help me, I'm so scared.0 -
Firelady,
You have appeared to go a long time b/4 recurrence. It may very well be possible to get you on an AI & Zometa or Xgeva to get you stable.
I was diagnosed from day one with bone mets and did chemo, zometa & Femara, now on Aromasin & Afinitor in 6/09.
Hang in there. I believe there are more options for you.
Terri
0 -
OMG, thank you for responding! My husband, children, parents, sister don't know and I don't know how to tell them. One daughter is in school in FL and we made a special trip down there this weekend just to tell her my node was positive. How can I tell her this over the phone? My God, I can't believe this is happening. I was so sure I had made it past the scary part when I hit 5 years. I'm sorry for the blubbering, I know you all have your own stuff to deal with. I'm just freaked and don't know what to do. My family is going to crumble.
0 -
Firelady ... I hear your fear, I've had it and it reoccurs depending on where I am with treatment. You will hear from multiple ladies on this forum that have been dealing with bone mets for years & living quality lives. Also check out other topics under the Stage IV forum. If it turns out you also have other mets, same thing, there are many women who are living quality lives while being treated. I was dx from the get go with stage IV, mult. bone mets in 9/2010; then, this past Spring 2013 liver mets were confirmed. My first tx of femara held me for 18 mo, after that I went through 2 other tx that failed and now the tx I'm currently on is showing a positive response. It was nearly 18 more months before a got a positive response and yes, I, too, was freaking out!! You will find what works for one may not work for another and vice versa. What is great are all the tips and support you get from these boards to help you deal with whatever tx you undergo and believe me, it makes a world of difference!! So hang in there, you will get through this. (Do you have support from family or friends?) It will take a while for the initial shock to settle in and then you and your MO will work on a plan to address this. From my own experience, it does get better, but it's defin. a ride I'd rather not be on. However, I'm here and alive with a quality to my life. Hugs to you ...
0 -
Firelady ... many families pull together at times like this. Take one step at a time. Where I get tx there's a social worker that helps patients and families deal with this, perhaps that's an option for you as well. Back in 2010, my girls were in college and I really had no choice but to tell them on the phone. We got through it and their friends were helpful to them and still are today.
0 -
Firelady, I too have been recently diagnosed widespread bone mets, right humerus, both iliac crests, sternum, both scapulas and ninth rib. I have been on weekly Taxol and the pain is completely gone now. My onc is very encouraging that this can be controlled for a long time. Your family will take their lead from you. Try not to panic. You and I have about the same time frame in. I too thought I was free and clear nearly five years down the road. You will feel better once a plan is in place. I will be praying for you and your family. Blessings, Kathy
0
