Bone Mets Thread
Comments
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Hi Danie and welcome! Finding out that you have mets is pretty hard to get your head around but please try not to let your head take you to the darkside as it is possible to live many years with mets and bone mets are probably the best sort to have as they don't directly interfere with vital organ function.
I was dx stage IV with bone mets four and a half years ago and I'm still going strong. Once you get going with your treatment and your femur is pinned you will feel a whole lot better about it all.
Love n hugs. Chrissy0 -
RangerMom,
My prayers are with you as well. Hope your new treatment gets rid of that mass in your spine.
Danie & Marion: Welcome aboard. Lots of info here. I've been stage IV with bone mets from the start in 6/09 (4.5 years). There's been a few with bone mets here for 10, 15, even close to 20 years. Hope your treatment works well to get you stable and enjoying life for a long time.
Terri0 -
Rangermom, you have been in my prayers. Please let us know how you are doing.
Danie and Marion, there is much to hope for. It's been 6 years for me since diagnosis. Nobody would guess today, without looking at the top of my head, that I even have cancer. My best friend lived 11 years with extensive bone mets and played golf every day for most of those years.
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Ranger mom thinking and praying for you today. Hope you are well on the way to enjoying your grand baby soon.0 -
Hi Danie and welcome. So sorry to hear you've advanced. I was stage 4 IBC at diagnosis. I had also been having sciatic pain for about 2 months before I was diagnosed (I was blaming it on our couch being too soft). Turned out to be mets to hips, spine, ribs, and pelvis. Chemo shrunk most. Just small "blips" on the hips remained. I was on Tamoxifin for almost a year when a few more spots showed up on my pelvis and spine. I've been on Xgeva and added Faslodex and Arimidex in March. This combo has helped keep everything stable and I've experienced a great deal less pain the longer I'm on it. I know I've surprised my docs with how well I've been doing, so it is possible. It's been over 2 1/2 years since my diagnosis and I'm feeling better every month. I know all that can, and will, change, but I'm spending all my energy on enjoying every minute I have. There are many here that have lived with mets much longer than I have. They are my inspiration every day. Hugs to you, Diane0 -
danieph77- so sorry you have to find us here! there is also a ladies in their 30s board that you might like to join, as well. i can relate to some of what you have shared- i was originally diagnosed with what i thought was stage 2 with no node involvement at age 33 back in 2011. finished a year of chemo, herceptin, bilateral mastectomies and had been on tamoxifen for a year when i hurt my hip kickboxing and randomly found a met to my femur on an xray. i had radiation to it, which caused a pathologic fracture, which then caused me to need a hip replacement. this mets diagnosis hit me really hard, but since i then initially regrouped, i have been hearing more encouraging stories about women who have been able to live relatively full lives despite this horrible illness, particularly those diagnosed with bone mets. i was diagnosed with mets at the beginning of the year, but i have met other young women living years out from the diagnosis. recently, at a patient advisory board, i was encouraged to have seen someone diagnosed at 30 who is now 42 and looking fit and healthy to me. i just went for a second opinion and the doctor told me he had met with another stage 4 young woman who was also ER+ and HER2+ like me and that they had already come up with 38 different treatment options for her. cancer sucks, mets terrify me, i have my bad days....but it is encouraging to see women with this diagnosis living life and knowing that there are treatment options to hopefully buy us more time than we fear we have.0 -
Thank you Chrissy, did you have your femur pinned also?
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Thank you all. This diagnosis has really scared the crap out of me. I have 4 children. 18, 13, & twins that are 8. The thought of leaving them really depresses me. Knowing that some people have lived 10 or more years really helps. I really want to see them grow up and maybe be a grandma one day.
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Hi Rangermom, You are definitely in my prayers! I hope the chemo does the job on that tumor and the paralysis ends and you get your wish to be home soon. Your inner strength is an example to all of us!
Hi Daniph77, Prayers are with you also. I haven't had any fractures but I know how you feel.0 -
Danieph77, sorry you're here. Cancer is never good but having bone mets is the best dx because people can live for quite a while. Actually there are people here with mets to organs that have lived for many years, so Stage IV is an automatic death sentence. I like many others here felt like we got a death sentence when told we were Stage IV but people here have been very supportive and convinced me that I can and will still live with this disease. I also was told by my oncologist and also a cancer expert (2nd opinion) that I'd be around for many years.
Right now you're probably still in shock. You will need time to grieve for the loss of your past life and the beginning of your new one. Although your new life will be filled with hardships, it also will be filled with joy, love and a new awareness of the preciousness of living and family. If you need support or any questions answered this is the place to turn to. People here do understand what you're going through and it gives you a great place to vent...scream, cry, laugh, anything you need to do.0 -
Hi ChrissyB, I think that you were put on femara after your bone met dx and it worked for you for 3 yrs. (I hope I get 3 yrs out of this med.). I was wondering if you had any pain while you were on femara? and if so, what did you take for the pain? This is such a huge thread to go through but I was wondering if anyone takes anything for pain from the bone mets? Any suggestions are welcome. I hate to use medication too often. Were you also given Zometa while you were on femara? Where were/are your bone mets? Femara kept you stable or did you get to NED? Sorry for all of the questions.
Thanks for you help! Love n hugs to you!!!
PS - I think I have seen that most women have good days & bad days on femara. I have good hours & bad hours but it's manageable.
PPS - When does this feeling that the floor is going to drop leave? I feel childish since I have been dx, you seem to have such composure and grace. I feel panicked at times still.0 -
Rangermom - prayers to you. So very sorry you're going through this and hoping you're home again very soon.
Christie, Gail, Marion, Diane - welcome to the site. Sorry for the circumstances, but glad you're here. Diane - I had a pin put in my femur last February. At Christmas last year, I thought I had a touch of arthritis in my hip and in January, was diagnosed with bone mets and tossed into the hospital for immediate surgery for the pin. The pin helped a lot; the surgical pain lasted a couple of weeks, but I only took ibupropen after I got out of hospital.
Spent about 3 months in shock and completely freaked out. And depressed. With overwhelming fear. Especially for my husband and little cat family -with me as sole support, what would become of them. So while that's not as serious as worrying about children, it's in the same theme.
This kind of goes to MusicLover's question too, for what it's worth. I went to a specialist cancer counsellor and she helped a bit. If nothing else, gave me someone to talk to. She recommended learning to live in the moment and instead of saying "I enjoy this, but I have cancer", say "I enjoy this and I have cancer". Amazing how much changing a "but" to an "and" helped. A friend also advised me to ask myself if I'm ok right now when the fear overwhelms me. And it still does sometimes. I'm in a pretty good space overall, but there are times when I hear a song, or see something amazingly beautiful and the emotion threatens to swamp me. So I'm learning to observe and acknowledge it while not dwelling on it.
It took me several months to get to this head space. The counselling helped, and part of what helped was getting a new oncologist who is optimistic rather than having me plan for hospice, and getting a new job, which was a double boost. First, they're focussed on having me around rather than asking me when I'm going to quit and stay home full time. Second, it was amazing to me that someone was willing to hire me - AND I have cancer (I fully disclosed my condition). My oncologist advised me to send my initial oncologist a Christmas card every year and say "I'm still here!" I'm learning, partly through being on this site, that this crap disease doesn't mean near-term death. As others have said above, there are survivors who have had it quite a while. My oncologist has several 10 and 12 year survivors who are doing great and one 14 year survivor who is also doing great. And he feels that with the current advances being made that the prognosis improves every day.
MusicLover - I take ibupropen every day for pain. My hip, back, and leg ache, plus I have arthritis in my knee (on the leg with the mets, of course!) and foot (on the other side). And then I have to take tummy meds because of the ibupropen. Chrissy helped me more than I can say.
Sorry for the long post...
Hugs, prayers, and love to all of you.
Terre0 -
Hi girls. I'm out at the moment but I have read all your questions. I will answer you all as soon as I get back to my laptop as trying to type on my phone is just way too tedious to do a long post.
love n hugs. Chrissy0 -
Danie, I don't have my femur pinned but my humerus is.........it was so honeycombed that one solid bump would have shattered it. It was quite painful to start but I also had rads after and that really took care of a lot of the pain. After receiving the rads, they keep working for a few weeks meaning that the pain over that time got less and less as the radiation killed off most of the active cancer.
Musiclover, when I was first dx with the mets I was put on Arimidex but had a small progression after fifteen months and was then changed to the Femara. I have been stable on it for just over three years so far so a total of four and a half years with the bone mets.
I have been on pain meds the whole time since dx and most of the time I'm fairly pain free but if I do too much with my arm I need to up the meds.........but that's my fault for not saying enough when I should. I am taking a combination of Paracetamol and Tramadol Hydrochloride as well as natural anti inflammatory and the combination works well for me so far. Ibuprophen was released on the market originally as an anti inflammatory so usually works well but the draw back with it is that as a long term medication it can affect your stomach and your kidneys so I would be asking your doc for something else if you are needing meds every day.
The main area that is affected with the mets is my left arm, shoulder to elbow but those other small progressions were in pelvis, spine and ribs but as of the last lot of scans taken twelve months ago they were no longer visible only the arm.
The main SE of the Femara is bone and joint pain but that can be alleviated somewhat by movement, even if it's a slow walk to the corner and back it does help. As I said in the previous paragraph, natural medicines in combination with your pain meds help a tremendous amount and has kept me with almost no SE's. If you want to know which ones I take I will be happy to tell.
This journey, whether you are on Femara or any other med, is an up and down one. I think we all forget that natural aging gives us good and bad days and having cancer adds to them. I don't know about any of you, but I swear I'm still in my thirties but my body tells me I'm over sixty!.......sometimes I need to be reminded and it does.
Music my philosophy of life and how I live it keeps me on a very even keel emotionally which allows me to be quite peaceful within myself. My secret, if there is one, is yesterday is done, gone, over with.......what happened then and how I dealt with it good or bad is done and I cannot change it so forget it. Tomorrow technically never comes as when it does it is today.............I have today to live, love, enjoy, laugh, communicate, create and I deal with whatever today brings in the best way I can and never allow myself to regret as regret just robs today of all the joys of living.
I hope I have managed to answer your questions without writing too much of a book.......lol.
Love n hugs. Chrissy0 -
Chrissy,
I love your philosophy; it echoes mine! At the weekend, my DS (12yo) said that he was worrie about what was going to happen to me. I told him that that was all in the future, but that today I'm doing fine. We had a great day, lots of family stuff, and in the evening he said 'you're right. Today is good. Let's just stick with todays'.
That warmed my heart!
Nicky0 -
Awe Nicky......how precious! I'm glad he is also learning that philosophy as it will stand him in good stead.
Love n hugs. Chrissy0 -
Chrissy, Thank you that is great advice, my friends give me similar advice. Initially, when I heard stage IV I honestly thought I would be able to deal with it better then I am, I probably was in shock. Now, since I am no longer in shock, I am just frightened at times. I haven't taken ibuprofen hardly at all but thank you for the advice. I did take it today and I feel so much better. (How did you realize that the BC came back? Shoulder pain?) Your picture is adorable (the little one & your great smile are terrific), is it recent? I forgot to ask, do you only get scanned once every 12 months? My onc has me on a 3 month schedule for bone and ct scans.
NickyJ, Your son sounds sweet, truly. I have a 15 yr. old son and I have cried a bit in front of him since my dx, I feel so bad about that. He got sick twice since my dx and missed 2 weeks of school, so I asked him if this was bothering him and he just said, "No mom, I'm ok, I'm just worried about you". Broke my heart. I forgot to ask, it must feel so much better mentally to be NED but do you notice a big difference physically too? I mean, do you feel like your pre-bc self a little bit or do you have se's from the meds that bother you?
My wish is to get to NED by my 6 month mark and I hope to feel like my old self for as long as possible.
Thanks again! Have a wonderful day!!! ML0 -
Musiclover I also have arthritis and bursitis in that shoulder and I had moved house so I thought all the packing and lifting had made them flare up. I was about 5 months over my five years when I finally got to go for my checkup and it was while the doc was examining me that I flinched a few times so he ordered scans which were done that same day and the mets were found. I had had a great deal of pain for about a year prior but just thought it was the arthritis and bursitis and was being treated for that.
The little munchkin in my avitar with me is my niece and that was taken by her mom when she was eight months old........she is now three so it's a couple of years old.........I haven't changed although I do have newer glasses......lol.......and I do have a color put in my hair as it has gone very grey over the last couple of years.......not that I'm vain about it but my daughters kept at me so I gave in.......lol.
I know it's hard not to worry about being stage IV and all that that entails but in reality we are no different to anyone else on this earth........we are all dying but we know what will more than likely be the manner of our death but we still don't know the when. Live in the day, one day at a time and I think you will find things will seem to become easier for you over time.
Love n hugs. Chrissy0 -
Rangermom......thinking of you and hoping you are doing a little better.0 -
Thank again, Chrissy. Your niece is a cutie! You do have grandsons, correct? (Sorry, I thought she was a grandson). I am going to do my best to follow your advice. (I hope that I can be as lucky as you and that the HT's work for a long time).
One last question for Chrissy and NickyJ, do you live as you did prior to the stage IV dx? I hardly go out now my husband does the food shopping most of the time and some of the cooking. I go out to the important stuff and I was going to the gym but recently I have taken a break from that. I hope to get back into a more normal routine but I guess that I want a break right now. Thanks again for the help you have given to me while I adjust to this.0 -
Hi Romansma, Thanks for reminding me of Rangermom, she is going through a lot right now.
Prayers are going out to Rangermom again. I am hoping that 2014 brings you good things, for the tumor to be gone and for you to be home again!. ML0 -
Terre, I just happened to scroll back up and noticed your post, sorry I missed it earlier. Thank you for the advice, it is good to know that it is not just me feeling this way and I hope your tips help. It must have been a complete shock for you, being stage 1 and having it come back. I never expected to be in this situation but who does? I really hope we can be like the 10, 14, 20+ yrs out ladies. One thing I am really going to try and do is not spend too much time on the web while my college kids are home. So if you don't hear from me for awhile that is why. (If I can stay away, but there is wrapping and cards and cleaning up the house, etc. to keep me away.)
Have a great holiday everyone!!! ML0 -
Musiclover I do all the food shopping although there have been times when my DH has come with me but he always unloads the car and brings the bags of shopping into the house. In all things I try to keep things as they were but there are things that I'm limited with and those I just ask if he will do them and he does. I love to cook but there are some days that I just can't.......on those days he will either cook or bring us pizza from the local Italian Restaurant........I don't mind that as I love the fresh true Italian wood oven pizza that is made there.
I am home a lot more than I used to be as going out too often exhausts me but I do enjoy interacting with other people and a short walk to my local stores gives me the opportunity to chat to a multitude of people.......lol......I guess that is the advantage of living in a small country town. I am not as good as I was with the house work but there again my DH doesn't complain.......sometimes I think he is blind to dust.....lol.....and that is a good thing.
Yes, I have grandsons, four of them aged 18,17,16 and the baby turns 15 on Tuesday. They are all young men now but when I was dx they were quite young. I am thankful that I have been able to see them grow to be the young men they are and see them blossom. I'm very lucky as I have a wonderful closeness with them all.
It is important to your own psyche to try to do things that you enjoy be that in the home or outside it and making sure you are interacting with other human beings is very good for your body and soul as it takes you out of yourself. This dx does take some adjusting to and we do go through a time of grieving for what was but as with all grief it does pass and we can begin to rebuild what we had.......it may not be exactly the same but it is good none the less.
Music please feel free to ask me questions anytime as I'm happy to answer them.
Love n hugs. Chrissy0 -
Thank you again! Have you ever seen Janice54 post? She is a miracle situation, went vegan, only on tamoxifen for 7yrs and has been NED since 6mths after dx. I dream of being like that, I want to be cured. I was eating pizza and having a soda everyday this summer for lunch. I totally changed my diet just prior to my dx and I have kept it that way but it is torture. I wonder if it is worth it. When you mentioned pizza, oh my goodness!!! Too many people are trying to cure me including myself but like I said, torture. When my health goes south and hopefully that won't happen for a long time, I hope I can still eat whole food and I will be ordering pizza along with a chocolate cake for dessert!!! lol.
(I do order from an Italian restaurant some times but now I get whole wheat pasta & shell fish normally with their red sauce, yum! I may have to change the shellfish and to fish since the shelfish since is high in cholestrol).
Getting hungry for lunch... going to eat some soup and veggies, oh boy! I do enjoy the soup though.0 -
I'm back for a minute.
ChrissyB, What time is it now in Australia? Do you sleep? lol. I visited there in 1987, I loved it! I have done a lot of fun stuff in my life, so that's a good thing. I haven't been to Europe yet, so we are talking about taking a big trip there this summer, the whole family. (God willing.)0 -
Music, we eat very little processed food and loads of veg but we do still have what I call treats and the fresh pizza falls into that category. I eat mainly gluten free with almost no cane sugar and dairy.
I bake cakes using coconut sugar and if I want chocolate cake I use cacoa. I use protein powder and loads of seeds so there is massive amounts of fibre. As I said before, I love to cook and I have always been an experimental cook so I adapt the old recipes to suit the new foods.
I love soups as well and make a variety of them all year round. Enjoy your lunch, I'm heading to bed as it is almost 5.00 AM.......yes it's another night of being awake but that is okay as I will sleep well tonight........lol.
Love n hugs. Chrissy0 -
Oh, my goodness. Yes, get some rest! You are a darling. Maybe I will treat myself to a "healthy slice of pizza" once in a while. A place by me makes it with whole wheat crust. I eliminated dairy products too and breads except for whole wheat occasionally, hence, the no pizza. No processed foods, I hardly hate much of those anyway. It sounds like you have made similar adjustments to your diet. I am a terrible cook so I buy homemade soups. The only soup I have ever made is pea soup but it's not the healthiest, with the ham and potatoes, so it's off the list. Maybe I should try and become a better cook.
(I lost @15ilbs in 3 months, 5'6" at 115lbs is too skinny, I'm tryng to put on some weight. People that have seen me and don't know the situation will say, "You lost weight?" some times they add, "Are you ok?" I feeling like screaming " NO!' but of course, I don't do that.)
(The old me was fun - I loved to eat, everyone that knows me knows that. These diet changes are tough for me but maybe, just maybe they will be worth it. Here's one, I just read that my old instant oatmeal from Quaker with sugar has more sugar than the same size serving of fruit loops! Then I would put chocolate chips on top of that. It is no wonder that I have cancer. In addition, I think I cooked the nutrients out of every piece of broccoli I ever cooked. I would eat red meat at least 4 times a week barbequed. But since I never had a weight problem...)
PS - I hope that you are asleep....0 -
Hi! I am new to the club that no one wants to be in, but wanted to say how helpful and encouraging this board is and thank you all for taking the time to post.
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Hi sissy2013--
Welcome to the club! I am sorry you've had to join our ranks, but hope you find lots and support and understanding here. It's hard to get that stage iv diagnosis, but you'll adjust to your new normal. Do you have a treatment plan yet? It really helps to feel like you are taking action to get rid of those cancer buggers. The good news is that there are a lot of treatment options, and even more on the horizon. Good luck, and keep us posted with your updates!! Sending (((hugs))) your way!0 -
So sissy that's it, you don't want to tell us anything about yourself yet? When you are ready...
I still don't want to put a picture up and I'm not sure that I ever will.0
