Topic: Bone Mets and NED

Many many people can have excellent response to treatment. The average time (I hate the word average) 6 months-18 months. Then you go onto the next one.

I had a great response to taxotere -6 months and counting...

Bone scans are okay, PET/CT is the best.

My mets originally showed on my PET, but my bone scan was negative.  I had to have an MRI to verify the mets.  Don't trust a negative bone scan.  I hope you reach NED.  I have not yet, but I have only been on Zometa for 6 months.  My spine mets worsened while I was on Taxol/Avastin.  Good luck to you.

Heidi,

I've never been NED but enjoyed a long period of stability with bone mets after 5 rounds of xeloda and taxotere.  I was stable for nearly 2 years.

Katie xxx

I initially had 5-6 lesions on my spine.  After finishing 12 chemos, my reports came back stating no evidence of metastatic disease.  I went a year before having an area on my hip show up, and that's stable after 3 months on Navelbine.  I'm hoping my next scans start to show healing. 

My first bone scan only showed 3 spots on my spine, and those were all sclerotic.  I think maybe a couple of the lesions were so close together they showed up as one lesion on the bone scan, though.  There was also one lytic lesion, which didn't show up on the bone scan, but did on the CT.  So I'm thinking that the bone scan isn't good at picking up lytic lesions, as that indicates bone loss, and sclerotic lesions are putting down more bone.  The bone scan shows bone remodeling, which is bone growth, so it would also still light up while healing.

I had mets to my liver and bones (several ribs and left hip).   I was NED after three cycles of Taxotere/Carboplatin/Herceptin.  That was last June. .   I have had a Pet Scan again in February still NED and a MRI in June ... all clean.  It can happen!!

Jennifer

Hi Heidi, i had bone mets for 3years i was on Falzodex , but now have pleural effusion . it was so easy to have a shot once a month. What is NED? I wish you all the best!

Liz

Hi Heidi,

I can relate to bone mets hurting like heck, having quite a few of them myself.  I have had two sets of scans since being diagnosed with bone mets in January.  While the disease still remains in my bones, there are no new spots so I am thinking that stable is wonderful.  Of course, NED would be nice but stable is good too.  I wish that you could get some relief from the pain though.  My onc. said that bone pain could "flare" as the bone mets were healing.  Perhaps your mets are beginning to heal - lets hope for that.  I think that I have had a lessening of the pain over the past six months of treatment.  I am not sure of your hormonal status but I am assuming that you are on Zometa?  I am sending you tons of compassion and wishes for more comfort.  I know that it must be hard to feel pain as you chase around a six year old.  By the way, I am hoping that her anxiety has diminished some.  Take good care. 

I am going to get a copy of my latest PET/CT and the bone scan to read through the impressions section again.  I think the PET/CT said no new signs of disease but that C-3 was still a hot zone.  The bone scan showed many areas of progression.  I spoke directly to the radiologist about the bone scan and he believes it is the bones healing.  Technically I cannot have flare ups (according to MSK cancer God) because I am TN or so they think.  I can have healing though.  I am on Zometa.  I sure would like to think this pain is due to healing rather than progression.  

Thanks again for all the feedback.  I feel optimistic.  Best,  Heidi 

Hey Heidi:

I just recently got dx with bone mets, along with abdomen and lungs.  I feel a small ache in my bones where my bone mets are but that is it.  I have talked to others in my chemo lounge with bone bets and they say they didnt have any pain with it.  So, I'm not sure how much you can associate pain with it.  I just think it sucks you got this news, but am hopeful your chemo will kick ass.  I look forward to reading your post.  You take care girl.

Linda

Thanks all for your posts.  This cancer world can be so isolating, frustrating and lonely.  Having this group of warriors is such a gift.  Best, Heidi 

Sandra, your post is so promising to me.  The doctors really don't know if it is progression or healing.  Since I cannot tell the difference in the pain I am not able to help.  The fact that you had no pain with your bone mets but do now that you are rebuilding bone gives me such hope that my pain is rebuilding pain.

Hi Pitanga, my ONCs and radiologists have all told me it could be blastic healing on both the MRi and Bone Scan.  What worries me is that they do not all concur because I can have new areas of pain and increased pain.  That some of them think is progression.  Hence my relief hearing that other people with Zometa and chemo are in pain during the healing process.  Thanks for thinking of that.  Best, Heidi

Heidi,

LuAnn said exactly what was on my mind too. The whole process of diagnosing the lesion in my cervical spine was very difficult because it turns out I have osteoarthritis up and down my spine. So it was hard for them to tell if what was showing up on the MRI was arthritic or malignancy. I have had pain in that area for years, which I used to think was just stress and now they say is arthritic.

In May a terrible pain appeared in my hip, a place I´ve never had it before. I couldnt walk without limping. First suspicion was another metastasis. They halted my Zometa and sent me for a PET scan. It confirmed the spinal lesion was cancer but said the hip was some other inflammatory thing. I went to a rheumatologist who said it was more arthritis and prescribed some drug that has glucosamine and condroitine. Condroflex is its name here in Brazil and it is pretty expensive. I just started and supposedly it takes a month or so to have any real effect. He also alluded to some other drug which he didnt name, said it isnt given to cancer patients because it may worsen their prognosis. He also put me on an anti-inflammatory called meloxicam.

This is all just to reinforce what LuAnn suggested, that pain may have more than one source. What are you taking for pain?

Have a great time at your summer hideaway with your kids!

Lisa

Editing to say ---they put me back on Zometa after the PET scan. They only stopped it because of the possibility it could create a false positive on the image.

Pat, I´m sorry to hear you are also having trouble walking. I had bone/joint pain with Taxol but it always was in lower legs and feet and subsided after a few days.

about scans flagging mets before pain does-- that was certainly my case, but since I had chronic pain there anyway, it may have masked any pain being caused by the actual met. But for what it´s worth, my impression is that imaging techniques, which aid in earlier detection, is where cancer treatment has made the most advances over the past few decades. But I may be wrong about that.

Are you taking anything for the pain? For me meloxicam helped quite a bit (but did not get rid of it altogether). It is way cheaper than the glucosamine and also has the advantage of working right away.

Lisa

Glucosamine/Chlondritin (I think that is how it is spelled) will help lubricate your joints,  We lose alot of our lubrication from the induced menopause chemo causes.  Estrogen helps lubricate the joints and when the menopause state hits you lose that estrogen.  I would try those supplements to help.  Also, physical therapy could be a way to help.  They can teach you exercises to increase your muscle strenth in the areas around the joints that have pain.  By strengthening the muscles it helps that pressure off those joints and eases pain.  A rheumotologist may be able to help also.  Before my RA was dx they wrote me a script for water therapy.  The warm water exercises really help the joints alot.