Bone Mets Thread
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Kayrnic lucky for us that we are ER/PR+. My onc has gold me that with ER/PR+ he has seen many women live for years with bone mets only. Every day I am amazed and thankful that I have been pain free the entire time. Sounds like you'll be here for a long, long time.
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Barb, great to hear you are dancing with NED!
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That is wonderful Barb. Hope we all get similar
Results!!!0 -
That is wonderful Barb. Hope we all get similar
Results!!!0 -
Latte, I had the same issue. When my surgeon told me that the cancer had spread to the bone I asked, "L4 or L5?" And there it was in L4 and S1.
I had injured my back some 30+ years ago and had a herniated disc at L4-L5. It was the most vulnerable spot in my body. When I had a fever it would ache, if I was super tired that spot hurt, etc.
Maybe it's a coiincidence? Who knows, really. But I sure wasn't surprised!
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Thx scorchy! It doesn't really matter but I'm sure there is something to my theory...
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I'm wondering how many of you have been told not to carry, exercise for you can fracture? I'm having another PET scan to see how or if tumors have grown or possibly spread to right shoulder and arm? I have had spinal myelitis in the past and paralysis over 20 years ago that left me with neuropathy. I turned things around and you would never know. But now have lesions from T1 through T11, 10mm tumor in medullary canal of femur and a 14mm tumor in the Femoral Diaphysis, and in the fifth rib. Currently can't move right shoulder and arm pain. I have arthritis and connective tissue disease so the doctors will not do any radiation whatsoever. I'm on Cytoxan to stop the arthritis pain and flairs from Faslodex and all pain stopped except where there is cancer in the bone. I don't only have bone mets but lung and liver mets. They did lung surgery in January but five new tumors grew back in the lungs one going into the heart area so they have me seeing a heart specialist. I'm most worried about bone mets because they are growing and spreading with treatment. I have had osteoporosis in the past and took years of then Calcitonin injections which worked wonders. I also cannot take some medications because of reflex caused from medication and see GI doctors who say no way what-so-ever. I too take 3,000mg of calcium a day and 5,000 of vitamin D3 which are prescribed from Oncologist. These past two days the pain is so bad that I was making dinner and went to take out plates to set table and dropped and broke four plates couldn't hold them arm pain so bad. See Oncologist this week after PET Scan and before chemo and Faslodex, she said we should talk about surgery. Looked up what they do for the tumor in Femoral Diaphsis and Medullary Canal and just cannot imagine all that surgery and I don't heal well which they are saying 2 weeks in hospital on antibiotics and drains. Have any other of you gone through this and can tell me how was the healing time and results of such? Just worried, is it worth the surgery and if you would do it again? All this and my Oncologist is leaving and moving across country because husband got a new position in D.C.. Building up trust and rapport with new doctor during this isn't going to be fun either. Sorry for complaining, I think it's the heat was over 105 here yesterday. Thanks for letting me vent!
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M360....I don't have any experience with the back surgery, but just wanted to give you a hug! You have been through so much! I hope someone will be along soon to offer some experienced advice!
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No one told me to not exercise or work out b/c of hole in my t4 vetebrea. The cancer ate to my spine almost without breaking the bone. I think it was caught just in time although there is pain there. I hope the zometa and letrozole keeps it under control. So far so good. I feel blessed that the vertebra didnt totally break. It is hard to know what you can do and can't do. My Onc seems to leave it to me. So far so good. Cancer sucks.
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M360, what surgery are they proposing? I had a spinal fusion in February for a to broken vertebra due to tumor. Three months later I've only just been given clearance to do whatever I want, with the caveat "don't fall, don't do anything stupid". Before now it was no bending, no twisting, no lifting.
The recovery from the fusion was long and nasty but even now I would do it again. If you'd asked me six weeks ago I might not have said the same. I just wished I'd known what to expect.
I could have had a lesser operation, but it wouldn't have solved my pain issues. Both the orthopod and the onc recommended the big operation as my tumor burden is low and they felt it would be worthwhile to "cure" the pain.
What I'm getting at is you should ask the docs, surgeon in particular, what relief you can expect for the effort you are going to put in on this. If you're going to spend 2 weeks in the hospital and a lot of rehab time, and it won't stop the pain, is it really worth it? Only you can decide, after they give you the information.
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M360
I had minimally invasive surgery for a fracture (L4) on my spine at Rush hospital in Chicago. I was in hospital for two days and only off work for 10 days. The only restrictions were lifting and no driving for 4 weeks. It was called a corpectomy and spinal fusion.0 -
Pajim, The surgery they are suggesting is for the area of the cancer in Femoral Diaphsis and Medullary Canal of right leg. It's the right leg which is needed for driving and I don't have pain all the time but when I drive it's hard to move leg from gas to brake after about fifteen minutes. Because of my connective tissue disease they need to have me on longer hospital stay and antibiotics. I looked up online what they do for such http://sarcoma.org/publications/OTOS_Book/13282_ON-37.pdf. I'm trying to plan and understand what and how to proceed. I'm a single mom with two daughters my oldest can get her driving permit but not soon enough. So my neighbor who is a nurse said she will help with groceries, driving me to hospital etc. I live in rural area of California so nearest store is 10 miles away. A new local pharmacy delivers so medication won't be a problem. It's the planning for these things! I don't like to go in unaware or not knowing what effect it's going to play on not only me but my family. The cement and pins, and how long physical therapy afterwards. I've had surgery in the past on my left hip and shoulder, knees etc, for arthritis but this is a totally different process and into bone marrow. I'm good at handling pain. Why they want to do surgery is that it's a weight bearing area, so much swelling after I drive that I have to wear baggy shorts. I guess I'll know more after the PET Scan, last one was in January, on how much further it has progressed. Oncologist said if it wasn't getting worse there would be far less swelling in and around that area. Even if I stay off my legs for a day you can see the whole area where the tumor is and major swelling. They said a fracture there is a hard heal. I've had fractures in the lower leg 20 years ago from osteoporosis and had sugery and was casted for almost six months because they couldn't get the bone to heal then I was only 115 lbs, not that thin now and this is in the thigh going into my right hip.
Sorry for going on and on. I'm a planner. When I had my mastectomy I drove my self to the hospital and was up and walking a half hour later and went home later that night with no pain meds needed. However, they kept my drains in for over 2 months because I didn't heal and then had to go in and do another surgery because infection set in even with antibiotics. This is because I was on Enbrel injections every third day for over seven years. My immune system is shot. They talked about this surgery after I had my lung surgery in January, but I said I could deal with the pain. Now it's more about the Xegva and Xeloda not working and again being a weight bearing area and needed leg for mobility and driving etc.
I've not known anyone who had the cement put in and how it felt. Maybe I shouldn't have looked up the surgery and found out all the details. In the past I never worried about such things, these days it seems it bothers me more and more the thought of another hospital stay. I'm not such a patient person with others caring for me, I've been too independent. This surgery doesn't give me those options, so I'm trying to create change within myself and learning all I can about such surgery so that I have less stress put upon myself and my family from my own frustration.
I thank all you ladies for your input, I don't know what I would do without this site and all the insight and help I've found here for all these years. I've dealt with surgeries, treatments etc., so well because of all of you and knowing that I'll get truth, what each of you experienced and I'm then able to make better and wiser decisions for myself.
So again I thank all of you and hope that none of you are suffering with too much pain.
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Barbs, a bit late but glad for your good news.
I've been absent for a bit as I have had to deal with congestive heart failure issues - not sure if it is the Xeloda or my nt handling an Xgeva injection well as I was low in calcium and Vitamin D when I got the first injection. We are going back to Zometa.
I have known about my bone mets for 20 months now. Some days seems like years ago and then again only yesterday. My bone mets were very extensive when found and until my scans a month ago, there had always been progression. Scans did show a tiny pleural effusion - hoping that is nothing; maybe related to CHF; don't know but it is tiny and not going to worry about it at thi, s point.
M360. I had a IM rod placed in my left femur in December for the same reason they are telling you.. Had a large amount of tumor and they were afraid of a fracture.Yes, the rod goes in the middle of the bone and into the bone marrow but not any different than anyone that has a motorcycle accident and has to have the IM rod. Some of my bone mets are in the bone marrow and some are not. I think most of us that have extensive bone mets have both bone marrow mets and bone mets - they are treated the same. We are also watching my right femur and right humerus - radiation therapy to the right femur may have bought me a year. My mets is in my entire spine, horrible in my pelvis and have skull mets. Name a bone - it is there. I have also seen a spinal surgeon because of the amount of cancer there along with buldging disc and lots of arthritis - they feel I am going to need him in the future, so we had a "get to know you appointment".
The IM rod was not a bad sugery for me. I was home within 3 days; only used a walker for about a week. PT came to work with me and they left after 2 weeks. I do have residual numbness in my foot. I didn't know what to expewhen it; but thankful I did so well. Now when it comes time to do the right femur, it could be entirely different depending on my overall health. I just faced the sugery as we do chemo - it has to be done. Did I like it, No. Was I upset and scared - oh yes
I hope that your surgery goes well for you, quick recovery time. Sounds like you have lots of support in the aftercare.
Don't know about all of you but if I get to thinking of my extensive bone mets, the surgery that was needed and that which they suspect to come, it just gets overwhelming. I ask my pain management doctor if I would become paralyzed at some point and the answer was yes; but not yet that the cancer had to start growing differently (ourwardly I think he said) Ask the spine surgeon that and he said he hoped we could prevent it. I try not to go there to often but just wonder how many places can they "fix" and at what price. I know lots depends on my overall health too. I had no idea I had bone mets - was astounded that it was so extensive when found. I think I must have a high tolerance for pain. Sadly, the only position I can sleep anymore is my back - no more on my side with a pillow between my legs. I tried that and woke up in so much pain and not sure I could walk if I stood. It is the little things that slowly slip away.
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Nanjam,
I had spinal myelitis 20 some years ago and was paralyzed. It took me years of therapy and you would never know that it had ever happened. I sometime wonder if the bone mets hit so extensively for me because of that and the osteoporosis that occurred after I started walking from paralysis? I too have high pain tolerance.
Thank you for sharing and letting me know what it was like for you with the surgery. It's good to know that it helped and wasn't so limiting.
I can't do radiation because of my immune system. From the beginning my Rheumatologist, Neurologist, Immunologist and Oncology team got together and it was an agreed consensus that I would never heal after radiation. I even got a second opinion from another hospital which said no radiation. It would be easier for me if I had that choice. I never questioned their decision for if they all agreed, they knew best.
My cancer is also into soft tissue around bone. Thursday they are doing PET Scan because the right shoulder and arm has started to swell in areas and major pain and weakness. Dropping of dishes, cup when drinking, I can only hold a cup with a handle. This is new and came about in the last three weeks. I've had no pain because of Cytoxan eliminates for some reason muscle and bone pain from arthritis. I'm taking prednisone 20mg twice a day to try and keep swelling down in muscle area. And use Volteran and LMX cream to relieve any pain. Last night was the first time in I had to take a morphine tablet. Could not sleep or get comfortable.
You have given me such hope and I'm so encouraged that I can do this and make it work. Thank you, thank you, thank you.
Wouldn't it be nice if magic wands existed and we could just wah lah and all this cancer is gone! What a dream!
Please take care of yourself and I appreciate the time and sharing of what you are going through. I hope that things get better for you too.
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M360 it sounds like the surgery doable, though not any fun. I totally understand about wanting to plan -- I'm a planner at heart and I like to know exactly what's going to happen.
What I've discovered over time "dealing with the medical establishment" (euphamism for seeing too many doctors) is that most of the time they don't really know because everyone responds differently.
The best of luck to you, and do take the pain meds.
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Although I knew in late April that my my PET was good, I didn't get a chance to meet with my mo until yesterday (wedding planing, end of school year etc.). She confirmed that I'm a "healthy" stage IV, an oxymoron if I've ever heard one. She is very adamant about stopping the Aredia after two more infusions as she feels there is no firm evidence to support any cancer stopping properties and she is seeing more femur fractures and ONJ in those who are on it for years. Makes me nervous, but I trust her. Will regularly monitor bone density and re-evaluate if there are issues. She also wants to pull back on scans to minimize radiation exposure, so moving to once every 6 rather than 3 months.
Imagine, a healthy MBC patient!
Caryn0 -
Caryn, what fantastic news. May we all get news like that!
I know that some people cut the biosphonates down to every six months for maintenance rather than completely stopping them. Did you ask your onc about that option if you are worried about stopping altogether?0 -
I was going to my doc and physio for months with excruciating pain in my back and shoulder that meds and physio couldn't relieve. My husband could see and move the lump in my spine. Finally last August my doc decided that I had a collapsed thoracic disc and sent me for an mri. I also asked for referral to triple check breast clinic as I felt a lump in my breast which she had dismissed as normal - I have 'lumpy' breasts. And then the roller-coaster started. i was admitted to hospital from the clinic as an emergency. I had a tumor on my t4 which was compressing the spinal cord and I was in danger of becoming paralysed. I had radiotherapy to shrink tumor. Scans showed I had multiple lesions and tumors all over my spine, ribs, hip, pelvis and skull. The bone in my right arm was eroded (at least two holes) and I had a rod inserted in it followed by more radiotherapy. I fractured my ribs. It felt like I spent months in hospital. I was told not to lift anything heavier than a third of a kettle full of water (?), no gardening,etc. I was put on aromasin, faslodex and zometa and my onc thought these would hold/reduce the cancer. I had further radiotherapy to my lumbar and cervical spine. Then I tripped and fell and fractured my nose and pelvis. The scans showed that the treatment wasn't working and I started on taxol in January.
I've had several nerve block procedures to ease the pain in my back and shoulder. The pain meds I was taking caused my oesophagus to become inflamed and I learnt that I have a hiatus hernia and gallstones. I have also developed lymphoedema in my right arm. The loveliness goes on..
Sometimes I can hardly believe this is happening to me. The rest of the time I feel so sad and frightened though I'm able to pull myself together when I am in company. I don't want to die but living like this is so hard. God knows what's waiting to come down the road. It's a relief to come on this site and be real. I find that family and friends don't accept stage IV as being terminal and they keep telling me that I'll be 'cured'. There's no point in contradicting them - I think they find it easier to be with me if we all pretend I'll get better. Then I leak tears when I'm alone
Aoibheann x
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Latte,
I went from monthly, the first year, to every 3 months this year. My mo has grown increasingly uncomfortable with long term use.
Caryn0 -
Hi Aoibheann and welcome. Oh my, you have been through a lot and its a real shame that your family and friends don't acknowledge your stage IV diagnosis. The good thing is that you have found this site........we do get where you are coming from as we are on the same road.
Everyone sheds tears from time to time, it seems to be the best way to release those pent up emotions that we're not sure what to do with and allows us to get through another day, another week and another month.
Keep coming here to let off steam, gather information and get as much support as you want..........you are not alone, we hear you.
Love n hugs. Chrissy0 -
Hi aoibheann
Welcome to the forum, I hope you get the understanding here that you are missing from your family. You certainly have been through a lot so far. But in terms of treatments you have barely scratched the surface so there are still lots of chemos to try, and I hope that you find one that works for you soon.
We need to be so careful not to fall - I also fell and fractured my hip, and it put me so far backwards in terms of my recovery. We have so much to deal with the cancer, but sometimes it's those extra things like fractures etc that are the hardest to get over.
Hope things move only upwards for you from now on!0 -
I am hoping someone can help me. I went in last week for my TE exchange and did the prophylactic ovary removal, or so I thought it was. Path report came back with dam lobular in one ovary and fallopian tube. Didn't see that one coming. Now I am stage IV and totally a hot mess. I was searching for an active threat on mets to the ovaries, but couldn't find one that was current. I would love it if someone can help me with this. I know this is the bone mets thread, but thought someone might know. My head is spinning.
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Hi Dianarose
I don't have any experience with ovary mets, but the best way for you to get support and help would be to start your own thread in the stage four forum and hopefully women with a similar dx will come along soon to help you.
Wishing you all the best on your new journey!0 -
I don't have personal knowledge about ovarian mets, but I have a friend who had hers removed and she is doing great. She is a 2 year suvivor and my personal hero!!! Her primary cancer is bc.
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Latte- thank you for answering back. I have to try to breath and calm down. How are you doing on Fermara? I know that is on my menu this month as well.
macyhen111- was your friends ovarian cancer bc mets and did she have to do any other treatments? I did chemo for 6 months last yr and am not ready to hop on that train again anytime soon.
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Caryn.......my oncologist is also starting to talk about taking me off the pamidronate and doing scans a lot less. I am nervous too, but I figure it is a good sign.
Diana50.....I know there are others that have had ovarian mets. I would start a new thread and I am sure someone will be along to help you. Sorry you're joining us.
Aoibheann........you certainly have been through sooooo much! Hoping the pain stays under control.0 -
Dianarose yes it was bc mets and she had chemo for it. I don't know what chemo she was on. I have been on chemo since Dec 17th and am having a pretty good run with it. My hair thinned but never completely came out, I wear it short now. The only bad se has been the loss of taste on my chemo days and 2 days after. If this chemo keeps the cancer from spreading I'll be happy to be on it for as long as I can.
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Aiobheann,
I want you to know that we here totally understand. I too have family that believe that I can overcome everything and I'm Superwoman. Which I am not.
I wanted to just give you a hug and say I understand all that you are going through and you are not alone.
Some days when I have a quiet moment alone, I cry, worry about how much time I have left?!
Sometimes family seems if they don't accept that the cancer will never be gone, that is the only way they can deal with the situation. When or if the time comes when things get worse, they won't be able to deal with it.
You have gone through so much and I admire your fortitude and ability to keep going with all that you have been through. When I read your situation it makes me realize that I too can keep going. So thank you for sharing and making me realize that I too am not alone on this site that there are women out there who truly understand and I know all these other women will be there for you and support your journey with you too.
Again thank you for sharing, I can't tell you how much I admire you and your strength.
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Dianarose, I think that SAMayoFL has ovarian mets too. You may want to message her.
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m360- i was reading a post where you asked about back surgery. I had kyphoplasty to my t9. it was not major surgery,but they injected cement like substance after biopsying area. I was out for about 1 hour and was fine the following day. Back felt weird for a few weeks when i bent or twisted but no pain. I don't know if this is similar to your surgery or not. I wish you luck.
I am going to talk to surgeon tomorrow regarding bmx and hysterectomy. Little nervous.
Wishing everyone well.0
