Topic: Bone Mets and NED

LuAnn, I´m very glad to find someone who has been helped by glucosamine/chondritin (I believe in your spelling, mine was just an attempt to anglicize the Portuguese spelling I see here in Brazil). I was so put off by having to invest in this expensive drug for a month before seeing any effects that I was considering just forgoing it.

Mary, all I can say is....WOW !!! You go, girl !!! This is the kind of news we need to hear!! Congratulations.  This deserves to be relayed in a thread all its own so that lots of people will see it. Or have you already done that and I missed it?

I have four small bone mets (2 spine, 1 clavicle, 1 hip). I did not know I had mets until I had a PET/CT when my onc was staging me at first diagnosis. The mets lit right up - very easy to see on the scan. I have not had a second PET/CT because it's a very expensive test, and my onc says my insurer likely won't pay for another for awhile, so I don't know if the mets are stable or not.

There are only two situations where they have ever hurt. One is when I first started treatment and had a cancer "flare." Then I had serious backaches from the spine mets, but Tylenol took care of them. A week later the pain was gone.

The other situation was when I overexerted the muscles near the clavicle met and the resulting inflammation caused pain for about 2 days and muscle spams for a week or so. (I helped my 8-year-old clean 40 pews at church for his first communion class project. It seemed like a good idea at the time. Let's just say he's not the only one who had a learning experience.)

So far, as long as I stay away from overexertion, no pain. I feel very fortunate. 

Original dx was bc with bone mets March '03, spine, hip, shoulder. Treatment was Femara and Zometa. Seven mos after start of treatment bone scan showed NED and I stayed NED until December '08, where mets were to totally different bones. Almost 6 years! I am now on Faslodex and tumor markers slowly climbing as of April. I have another blood test in two weeks.I've read markers go up at first so I am praying the next test will be at least going down some. So, yes with prayer and treatment, we can show no evidence of disease. I am praying for you Heidi and all of us. lovemarsha

Hello Heidi,

Just had an appointment with my Onc re pain and the possible injection.

We've decided against the Steroid injection as there is too much chance of infection, which we definitely don't want.

I had a 3cm lesion in L4. I had radiation, and all seemed fine afterwards. We're thinking that another reason for the pain other than sclerotic activity could be that the vertabrae may have shifted or collapsed slightly causing nerve pain. She has put me on another drug which is designed to help with that.

It seems that there are so many things that could cause pain. I'm sure I'm having side effects from the Femara also and am not ruling out arthritis. I got psoriasis after having Chemo years ago and there is a thing called psoriatic arthritis.

I have taken Glucosamine and Chondroitin for years and I know it does help.

I'm juggily the drugs(especially the oxycontin) at the moment to see if there is any way I can reduce them. It freaked me out when I heard on the Telly that Michael Jackson had been on it before he died.

Good Luck, I really hope you get rid of the pain. I'm still Stable. I hope it lasts.

 Sandra

  HEIDI,  When I got my initial Stage lV diagnosis I had extensive bone mets in the sternum and spine, also a few ribs were affected.  As I was told by on oncologist, it takes a long long time to see any changes in the bone.  I do not think you can achieve NED (that means no evidence detected, correct?, because as I said the bones just don't show that)  I guess for the bones to look clear they would have to fill in where they have been destroyed and I just don't think this can happen.  WIth radiation which I had in Feb 08 due to new mets detected in my sternum, it got rid of the pain, but when I asked after the scans if the place had disappeared, I was surprised to find to be told, Oh no, it will still show up on the scans.  What the radiation does is kill the active cancer cells so they are no longer able to grow, but it won't get rid of the spot that was there.  I was under the impression radiation would just sort of ZAP it away like the laser guns do in the star war movies.  My scans this Feb. 2009 showed new mets to the lumbar region of my  back so I then began my Avastin/Abraxin treatments which I have been doing for almost 6 months now.  I do not expect them to see any changes in the bone, but if there is on new growth, I will once again be stable.  When they repeated the scans in May, they called it stable since there was no change in these areas and even a slight decrease in the liver lesion.  What the main concern now is the spots in my liver and I am hoping they will find changes there as well as in my lung.  I hate to disappoint you about my opinion regarding NED, but stable is great in my book.  I failed to tell you that I got this diagnosis of bone mets, along with lung and a suspicious spot on my liver 11 YEARS ago.  So don't go according to the statistics.  We all respond differently and I did very well on tamoxifen and the AIs since I had positive estrogen receptors which I note you do not.  What is your treatment other than zometa.  I was put on pamidromate as soon as they found the bone mets because that was pre zometa days and I would say the bone pain got better within maybe three months although at one time I was taking a lot of pain meds like Viox (which worked great, but they took it off the market) celebrex, ultram, Tylenol 3, and another one, I foget the name of.  I now get zometa once a month and think it helps keep the bone strong as well as keep it from moving to other areas in the bone.(am not sure on that last part)  As I said this was 11 years ago so I consider myself a "special statistic" due the fact I am still here, still working (although I think this chemo is going to change that in the near future) and leading an active, pretty much pain free life.  I have never had a PET scan, only bone scans, CA 27/29s, CAT scans and MRIs.  The CAT scans are to check my lungs and abdominal area.  One MRI I had was to check the pain in my sternum and my orthopedic doctor ordered that one, but my onco keeps track of my bone mets with the bone scans.....and every time they read Stable, I rejoice because if you can't see change for the better at least no change is good.   I wish you the very best of luck.  You are at one of the best hospitals there is.  Oh re length of time.....I think my bone mets were stable after the first 3 - 6 months of treatment and as I said remained that way for a long long time.   Never give up as there is always hope.   Marybe

Thanks Joni.  I have sort of decided that is my mission, to give hopes to others. I never thought 11 years was such a  big deal , have just gotten used to the idea that cancer is a part of my life, but then when people would sort of gasp when I would say I was Stage lV, but then added it had been 11 years and got even more of a shocked response, I realized that me telling others might help them out and give them hope instead of dispair.   When I was first diagnosed and read the statistics in a book at the library I was so depressed I immediately went and bought a GIANT pack of mikduds, one of my comfort foods, and called all my friends together for a pity party where we literally cried in our beer.  I have since learned we are not statistics, we are people, living breathing proof that life does go on after cancer diagnosis.  I think for the most part we all learn that we are way stronger than we ever thought we were and I think how we deal with our cancer has a lot to do with our response to therapy.  I am living with cancer, but do not necessarily feel that I am dying of cancer.  When you stop to think about it every single living person, with cancer or not, is terminal.  We just sort of got a little heads up that in my opinion makes me feel I need to make the most of each day and love/live  life to its fullest.  I no longer worry about how I am going to pay for a trip or something that comes up, I DO it.  Scarlett O'Harah had the right idea on that one...."I'll worry about it tomorrow.  Tomorrow is another day"  I wish you the very best.   Marybe

I was dx with bone mets to shoulder and hips 3 yrs ago.  Started on tamoxifen and 6 mths later I was NED.  I still am.......my Dr. said if I went to another Dr. who didn't know me he would say what cancer...you do not have cancer.  He also admitted that I would be around for a very LONG time.....wahoo!!

I have a question regarding readings of Bone Scans...Did a regular radiologist read yours or did you go to a Bone Specialist?.....My Bone Scan said no evidence of metastesis but I have not had pain in my back like I have now in my whole life...It even bothers me at night and I have to take pain pills then.....Thanks all....Have I told you all how much I admire you all???......I know you all are dealing with your own pain and problems but you always come here to this site and help others when we need it......Thank you all for your help!........

Gale,

We can't feel that way....He sounded more up-lifting (forgive the pun) ........Maybe it's our own sub-conscious that gets to us..... I feel that way every-time someone talks about making plans for anything!

    I wonder why my bone mets has not changed (meaning it has never gone away) and is always in the same place in my scans?  But when it stayed stable for so many years, they did tell me I was in remission.  Are there different degrees of bone mets.  Also I have had several fractured ribs, that I  was not even aware I had  other than maybe when I very first did them and it was usually when I had a very bad cold so guess they came from heavy duty coughing.....but these still show up on the scans as "healed fractures"  I sometimes watch the skeleton on the scan and there are tons of white places and I wsa told those were places that picked up the dye more (also places I have the cancer)...one that shows up really white is my knee replacement.  I am going to ask the orthopedic doctor about this on Monday since I won't be seeing the oncologist until next Wed. 

I am finding all the posts on this thread very informative and some very inspirational.  I went to see another ONC at Princess Margaret Hospital (Cancer hospital) in Toronto today.  Very nice man.  PET/CT scans are not even available here for BC patients.  He is a BC doctor that specializes in pain management. He doesn't think I have arthritis (but didn't rule it out).  But did say the pain may be a side effect of the taxol.  He doesn't think that bone mets are really ever NED but that they do stablize and can remain stable for years.  This and Marybe being 11yrs out really have made my summer.  Let's keep sharing this info. because there are so many of us with bone mets.  Best, Heidi

No active cancer is NOT NED. NED is no evidence of disease.  If the cancer has changed the bone structure, it may not be able to return to its norm.  No active cancer is remission.  Remission is good too.  NED means that no one can tell you ever had it.  I think lumpectomy and mastectomy scars dont count.  Its only tumors that factor in.

Yeah I kinda hedged around it but thats what I meant.  Bone mets rarely go NED.

Thank you, thank you for clearing up the NED.....I knew it was No Evidence detected and also was quite sure from what my onco told me a long long time ago, like I think back when I started with him in 98, that it takes many many years to see any changes even after treatment......like with my sternum which was pretty well eaten up by the time I started seeing him.  It still shows up on the bone scan BUT as long as it looks the same, I am stable.  When I had the radiation on my sacrum last year and had the scan afterward and asked if the tumor was gone, I was told the tumor will still show up on the scan which surprised me.  I was then told that what the radiation does is kill the active cancer cells....the evidence of the actual tumor will still show up in the picture, but it will no longer be capable of growing or have active cells in it which I guess could spread.  After reading a few post here about how tests were showing up clear after treatments,(NED)  I was starting to think Gee, what is wrong with me...why are my scans still showing the same sites that were there when we started all this?  Regardless, I am not complaining since I do know you can live for a very long time with bone mets and up until this year when I started on this chemo regieme I am now on, I have not have any bad or irreversable side effects.  My bone scans usually show arthritic changes associated with aging, but I look at that as good.....as long as I am aging that means I am still having birthdays and it may sound crazy, but I now look forward to aging.  I recall when I was a teenager and told my father I did not want to get old....he likes to remind me of this at times.  I am now actually looking forward to turning the big 60 in December.  Cancer does sort of make you see things in a different light.  The reason I am doing chemo now is because of the new bone mets to my lumbar region which the bone scan picked up in Feb. and also because there was a new lesion in my liver......the scans I then had done in May did not show any new activity and there was a slight decrease in the liver lesion.  I will be completing treatment #24 the 29th of this month and then they will repeat the scans and hopefully the bone mets will once again be stable and the lesion in my liver, maybe even my lungs (although for some reason they never seem to change much and no one seems too worried about them), will be smaller yet. 

      I have broken quite a few bones here and there and in spite of my zometa which I know strenghens my bone, sometimes they have taken a long time to heal.  I had to have a pin finally put in my 5th metatarsal after it would not heal.  My knee replacement helped me out a lot since I had back pain and other pains and aches just due to the fact my gait was off.  I also have had quite a few physical therapy sessions which I love because they always make me feel so good and I am very bad about doing exercise on my own.  What is due to arthritic changes and aging and what is due to cancer meds, I am not sure, but I am quite sure my bones mets are not going to be the death of me. 

I have been dealing with this for quite awhile, but I feel I am still learning and appreciate the information I get from these message boards.  They say experience is the best teacher and with these posts we can benefit from each other since we have experienced it and that is worth much more than a brochure, medical opinion or statistic, whatever, in my opinion.

    I hope all of you have a good weekend.  I am at my father's for the weekend and the weather is looking really nice here.    Marybe

((((Mary)))) this is very god news. I have extremely extensive bone mets and they all ways active. I was on Xeloda, Taxol and Avastin, nothing works for me.