Bone Mets Thread
Comments
-
Um, Debbie Downer here. I debated with myself about posting this but decided I should. I was a few months past 4 years of bone mets when liver mets were found.
Unfortunately, there are no guarantees with this disease.
Leah
0 -
Good Morning all
Sue Thank you for your thoughtful account. Sorry Abraxane has been rough so far
Kendrasue- thinking of you
Leah- I think porting what is real is important- we are all going to have different journey's
50's did you say when you started TM were 947? I also hear there is so much contro over these markers and it seems there are a couple of different tests- can any one speak to this and maybe share which test they had? Mine was CA 27-29.
Warm hugs
0 -
Hi Gaia - yes, 947, pretty awful! That was my CA 27-29. My MO said it's not the number as much as the direction it is going. Of course, that was right before he told me the number. He knows that I have tried to be well-informed, so he probably thought I would freak out at the number. I have also heard that they aren't accurate for everyone, but as long as mine goesdown, I will be happy. I had severe pain all over before bc dx. All my blood tests were nasty. My inflammation count was sky high, so the TM might just have been accurate for me. Time will tell.
Lynne
0 -
Myra, somehow I missed your latest grandbaby's photo, here is my belated praise. I agree with lynnword, who would not smile while looking at this cutest little child?! Happy for you!
Interested in the talk if the mets will spread out of the bones after long term confinement. I guess if the mets has stayed only in the bones for a long time, it suggests the cancer be of a slow growing type which is the key factor for long term survival. The other or another key factor is responsiveness to the treatments. If one is lucky to have these two factors with her MBC, such as Pearlady obviously does, she is hopeful to die from other causes in old age with the mets still in the bones. Only that both the key factors are not something that we have any control or choice of. What we could do is to build a strong health as the fundamental strength to go through whatever we have to and to sustain our waiting for the cure.
Had a little trip with husband to the Clark Institute in Williams Town, MA, yesterday. It has been our first outing since my MBC diagnosis in February this year. Driving was an hour each way. Beautiful late summer green everywhere. No physical challenge. Felt calm and ease. Finally gained some feeling of normality.
All, have a nice Friday!
0 -
50s wow it really such a mystery. I have extensive bone mets and yet my blood work looks like a 'normal, healthy person' and my markers are 84, Which is up from June, but I haven't started treatment yet.....
It's a mystery. and confusing.
0 -
Apologies for barging in on this thread. Dunesleeper, I just wanted to let you know I feel for you. The nausea that came with the liver mets was unbearable, sometimes I couldn't even blink my eyes without barfing. I realized that the bulk of the nausea came from pain meds just sitting there in my empty stomach. I don't know if you're taking oral meds for pain or not, but just thought I'd mention that it got a whole lot better when I switched to transdermal patches or a pain pump. That combined with ALOT of ginger helped a great deal. It didn't completely go away, but helped enough to get me upright. Mostly ginger simple syrup mixed with seltzer. The bubbles helped....(and a bit of marijuana if you're into that). Don't know if it would help you, but thought I'd throw it out there. Hope you feel better soon.
0 -
Dune, sorry I have little experience to form any advice re your nausea issue. Just to let you know that I very much hope the problem be solved quickly and you continue the treatment that is working. You are in my thoughts. Hope today you feel better!
0 -
Hi ladies! Please forgive me if this sounds stupid, but could someone explain " tumor flares" and the pain associated with this? I have been very fortunate to have had controllable pain, mostly in my left arm. Some days, I have pain in my back and ribs, where I know I have mets. It can be quite intense. Some days I have no pain at all. Is this flare pain that some of you speak of? What causes it? There is no pattern that I can see. Just had good scans last month, some healing/scarring in the bone mets. I have not discussed pain management with my onc in great detail since it has not been an issue but will do so at my next visit. Any advise or information is appreciated
0 -
Xavo, so glad you had a nice trip. It's so important for us to grab any 'good' time that we can.
Leggo, I will have to look for Ginger syrup. Thanks for that suggestion. I drink Gingerale which helps some.
Lynne, good to hear you are doing well on Arimidex. Your right about our MO's telling us just so much. They must have a hard time keeping all of us and our emotions straight.
Suecolo2, 9 years is so wonderful to hear! I'm out 6 with metastasis. I always show progression even after having some tumors radiated twice. My MO doesn't do tumor markers. Said my scans tell him more. I'm going to ask my MO about Xeloda. Sorry Abraxane is so tough. It is just spin the wheel sometimes isn't it? I try to balance QOL and treatment. And YES send a letter in 2016!!
Dune, hope your nausea gets better. Just getting that under control will help.
Jo, we need sunshine!
Annie, Deanna, Gaia, Leah, Valerie, Linda E, Myra, KJones, and to everyone I missed...a good weekend to all.....
Hope, and Patty.....how are you doing? Check in with us if you can.
I just got back from my CT of jaw and panoramic of teeth, and dentist. No ONJ lurking, but possible root canal. Makes me nervous. Have to wait on Zometa or Xgeva now. I got to grab a goody out of the kids basket for being a good dental patient. We all had a laugh when I picked out a tiny plastic coin purse. ( it has stars on it, what can I say)
Linda
0 -
gaia, my local onc does the CA27-29, but my UCLA onc sometimes asks him to add the CEA. Back when I was originally dx'd, my CA27-29 was in the 10 to 12 range. When re-dx'd with mets, it was a shocker to learn it was at 155. On Anastrazole (Arimidex) -- my first tx -- it went down to 75 and then back up over several months to 298. Hoping my new regimen is knocking it back down again, but it has always been extremely accurate for me. CEA, which I don't personally watch as closely, has ranged from 3.5 t0 12.5. And love your pretty new avatar.
Valerie, thinking of you this a.m., and hoping your mind isn't spinning too wildly after your appt, and that you feel better after getting what I would assume is a treatment plan in place at this appt.
Pain-free & nausea-free thoughts & wishes coming at everyone, especially Dune. Oh, and I'd go simple on the 70's theme -- maybe a few prominent items (could get get a couple of iconic 70's cars -- like from a car collector or via a local car club -- to evoke the decade and do photos with?), as well as some table decor (maybe using photos or record albums?) for the 70's theme? And I can hardly believe you're taking this on during chemo! Wow!
Hope we can all find things to enjoy this weekend!
0 -
Deanna
Thank you for sharing your information. I guess I will see /hope that my tx plan brings the makers and the mets down.
The picture was just this month- my 50th birthday. We took an overnight trip to DC; a nice change of scenery, the monument and a nice dinner.
definitely having lots of ups and downs these last few days since the dx was 'upgraded' to IV last week, so I appreciate everyone's kind responses and any information I can gather.
hugs
Christine
0 -
suecolo2, thank you for sharing your great nine year story. Ibrance might not be working for me so Xeloda is next on my list.
Leah, you are not Debbie downer. I SO appreciate knowing your story, as well.
I can't do the mentioning everyone thing that goes on on this thread, but I do read the thread and I do appreciate everyone one on it, your insights and your loving support of each other.
Stefanie
0 -
sue Oslo, good to,hear so many years. I have similar path. Hormone treatment eventually failed so,I have been on many dif chemo drugs. Cancer going on 15 years, this September it will be 4 years at stage iv and chemo. Still living a full life. Hugs to
0 -
Hello everyone,
It was my pamidronate infusion day today so I'm feeling a little tired tonight. Had a visit with my MO and she said that my June tm's had dropped from 13 to 10, I was really happy to hear that as they have been dropping since I started treatment. They started at 137 last September rising from 125 in June 2014. I pray they are an accurate indicator for me.
Kendrasue, how did you make out at your appt? Praying all went well and you were able to get to your rose bushes.
Linda, glad you enjoyed lunch with your friend and she truly sounds inspirational.
Suecolo2, so sorry about the side effects of the abraxane, neuropathy is terrible and I know how miserable it can make you, I suffer from it from my MS. 9 years with bone mets is amazing, I hope you get another 9 and more! I would send that letter!
Xavo, sounds like a wonderful time with dh. So happy you gained a feeling of normality!
Lynnood, tumor flares can happen when treatment is working, I've had it happen to me after radiation. Just prior to my last scan my L5 met bothered me terribly but my onc said scan shows healing.
Lindalou, yay to no ONJ but boo on the root canal. Don't be nervous, it's amazing how they do them today, like getting a filling. I worked as a dental technologist before I had to give it up.
Hello to everyone else here, my eyes are burning and I need to pick my daughter up before I can go to bed. Wishing everyone a pain free weekend.
Hugs to all, Annie
0 -
Rest up, Annie! Glad your TMs are continuing to fall. That's great news!!!
Patty just replied to a text I'd sent her earlier today. She had been in the hospital all week... just got home... hoping to catch up on reading here over the weekend. Sharing this update with her permission so that we can all send her positive healing vibes and prayers for a very speedy recovery! Evidently there was an issue related to her recent surgery that needed fixing. As you might imagine, she's very happy to be home now!
Hugs & happy weekend to all!
0 -
I'm back! Trip was wonderful, not a day of bad weather, but the last day my pain has greatly increased. I can just feel tumors growing. Before I went on vacation my Ibrance was stopped bc my wbcs tanked to 700? I don't even know what that means. But anyways, the 100 mg Ibrance comes in the mail Tuesday so I will restart the cycle then. And I get my Xgeva/Faslodex Wed as a shot so my cycle will be almost perfect. Here's a photo my DH took on one of his early morning strolls...
0 -
thank you for the update on patty.
0 -
Thank you for contacting Patty Deanna. Come home. Settle in. Keep getting better. I look forward to seeing your posts Patty.
Thanks to everyone for your concern. First it was the pain, then the nausea. I think you ladies put on your big girl panties a whole lot better than I do.
For those suffering with neuropathy, is there something that can relieve that? I heard a good B-complex helps. It sounds like it seriously messes with your life.
Today was another day of nausea and walking around with my ginger ale bottle. I do have plain water (alkaline water) next to my bed now. I usually feel better laying in bed, but not so much lately. Nevertheless I am going to the Fair. It's not too far away, so if I get to feeling really bad, I can just rest somewhere, walk to my car, rest some more, and drive home. At least my friend will know I made the effort.
Leggo, thanks for your suggestions. I am taking oral meds, but never on an empty stomach. I will mention this to my doctor. I see her next week, Friday, I think.
0 -
Yes, Hydranne, I will learn to live with this treatment or .... well ..... there you have it. I will learn to live with the treatment. LOL
Here is a picture of the "photobooth" area I hope to create against one of the walls. The stairs you see in the background are the "golden staircase." It never occurred to me to ask why they were called that, but I'm going to assume it is because we were not allowed to walk on them. Only the nuns could. It's the picture that is on our yearbook, except mine is more realistic. I will print that into tiles to attach to plain brown paper. The bead curtain will go up just in front of that. Then there will be the space for the ladies to take pictures. The far front has the name of the yearbook Setonea '75. I'm thinking the bead curtain gives a sense of stepping into the past. Add a prop or 2, and voila, hopefully they will have some fun with it. Oh yes, the school colors were maroon and grey. so bright and cheery. Those are maroon and grey balloons around the decoration. And the balloons at the top will be vertical, like on the sides. I just got lazy with them.
0 -
Deanna, thanks for letting us know about Patty. Sending her all the positive healing vibes and prayers that I can!
Cristina, wow what a beautiful picture. I'm so happy to hear the weather cooperated but sorry to hear you were having increased pain at the end of your holiday. Please don't think your tumors are growing ok, don't visualize that at all, maybe they're shrinking because let me tell you, cancer healing is also very painful! That's what I'm praying is happening to you and I'm sending all my positive mojo your way.
Dune, I only just heard of being able to rent a photo booth the other day. My niece is going to have one at her wedding next year. Wow you are so creative, what great ideas, you rock! I'm sure you will all have an awesome time.
Hugs to all, Annie
0 -
I'm back ☺. Now that my brain is semi awake I'm realizing I forgot a few things. The infusion yesterday has me feeling not so great today, strange because the last few haven't bothered me at all.
Hydranne, hi and thank you! Hopefully I will feel better by tomorrow. I just feel so tired and achy but I have probably overdone it the last 2 weeks.
Myra, just watching the news and they were talking about tropical storm Erika. You had mentioned about a possible evacuation, so I'm thinking of you and wondering how you're doing?
Gaia0132, happy belated 50th Birthday! Mine was on the 14th of this month. I always tell people that I'm not 50, I'm 32 with 18 years experience 😃.
Romansma, thinking of you, missing you and hope you're feeling well. Please check in when you can.
Wishing everyone a great and pain free weekend. Heading to the patio as dh just delivered my coffee and carrot orange muffin, I know I know but it is a whole wheat muffin!
Hugs, Annie
0 -
Good morning all, happily no evacuations, TS Erika decided to behave herself and dissipate some and move west from Ft. Lauderdale.
Dune, terrific picture. Try to have fun today at the fair. Have a good time and try to forget about cancer. I remember when I was on chemo small, lighter, frequent meals really helped. Try not to let ur stomach get completely empty.
Cristina, what a resort! Glad you felt good most of the time. Perhaps your pain has returned because you are going home and have to face the stresses of everyday life. Try to Remember the great time you all had at the resort when you go to dark places.
Annie, so glad to hear your great news about your TMs. Can you please have them speak to mine so they understand which way they are supposed to go?....LOL
Linda E, in case I forget with my chemo brain have a very happy birthday on the 1st. Enjoy it with your friends and cherish it.
Lindalou, congrats on no ONJ. Too bad on the root canal.
To everyone else, have a wonderful Saturday. At least my laundry is done and grocery shopping finished in anticipation of the storm.
Hugs, Myra.
0 -
Annie, we must have been posting at the same time. Myra
0 -
Myra, glad to hear all is well and you didn't have to evacuate, what a relief! I wish I could say my laundry and grocery shopping is done, but nope, Annie's been lazy. Oh well, I have a saying about laundry, you can run but you can't hide 😁. I'm sure I'll get to it eventually, something I would never have said prior to this diagnosis. I actually was a little OCD but learned to let things go. Ok Myra, my tm's are having a talk with yours, and down they go! But seriously your good scan is what really counts! I talked to my rad onc about this when I got the results from my CT and was asking him about my tm's, he said why does it matter when the scan in front of us tells us everything. I guess they don't always rely on them. Maybe yours are just taking awhile to drop but other 'non cancer' related things can make them rise as well. Even when I asked my onc yesterday about mine she said it's great that they've dropped so low but the scans give us the most info. And it's more about watching the trend that the tm's take, sorry for the ramble, I hope this helps!
Hugs, Annie
0 -
Hi, all! Just want to cheer on all the positive happenings on the board and wish everyone a nice weekend!
Lynnwood, I guess tumor flare pain is rather mystic. My onc mentioned it only once when I was complaining the pressure like pain surrounding my front lower edge of the ribcage. That was about 4 weeks into the treatment beginning 2/28. But clearly my onc does not exactly know how the tumor flare pain feels like. He can't be blamed for that because he has no way to know it. In my imagination, the tumor flare situation is like a wild animal (the cancer) is fatally wounded and then startled and then struggled; the spot is hotter; the lymph fluid is heated; the lymph nodes are slightly enlarged; all this is felt as pain. Do not take me seriously. It's only my dramatization of the tumor flare thing. My experience of my bone mets pain seemed to be a little different from yours. Mine is rather stable. In Jan. and Feb the pain was sharp, felt like severe muscle pulls. In Mar. the pain subsided. Now I only have a little dull ache on my mid back plus some mild burning sensations along the ribcage lower edge which is getting milder and milder. Never any sudden severe pain coming and going. So I assume I am not havimg any more tumor flares if I have ever had any before. In any case, tumor flare sounds like a good thing to have for us metsers. If everything is pointing to the good direction in your condition profile, given that the tumor flare does exist, the sudden pain you felt must be the tumor flares, I suppose. So sorry I am not being any help in understanding the tumor flare.
0 -
Hi ladies, Just reading all of your posts for now and trying to gain wisdom. Newly diagnosed with BC this past June... Stage IV straight out of the gate with bone mets to spine, clavicle, ribcage, pelvis and numerous "other" places. Right now it's only in the bone. Mostly concerned with the spine as I've been experiencing a lot of pain there and in my rib cage since I started treatment. On my second treatment cycle right now. My Onc doesn't want me lifting anything over 10 pounds because of the spine. My cat weighs 11 pds... but, I think I'll risk it.
0 -
Welcome Chatty! Wish you great success in your treatment (try to lift your 11 pbs cat as less as possible)!
0 -
Hi, just checking in. I read this thread everyday. Y'all are my favorites! Cristina love the picture. So glad you had a fun time. Welcome Chatty. Dune, hope you have fun at the fair. I love fairs but don't knock yourself out. Regarding tumor markers. My Dr. doesn't take them. She said scans tell her everything she needs to know. Regarding pain she said, you can have pain with progression, you can have pain with regression, you can have pain with healing, you can have no pain with progression. I was having major pain in my right breast where my tumor is, so bad it woke me up a couple of times. I thought, wth, is it growing? Is my chemo in vain? At my last visit, my MO said that the tumor is significantly smaller and much softer. Cancer is a head game. Love to everyone. Hugs all around. Wish we could get together for coffee. XO
0 -
Cristina, I like the picture. Ask your husband what lens did he use? Looks wide angle. I'm brushing up on my photo skills.
Ellen
0 -
Xavo, I totally get your explanation of tumor flare pain! I like to think that it means good things are happening! As bad as my pain was yesterday, today it's completely gone. I guess I'll never figure it out. Welcome Chatty! What treatment are you on? Tx mom, Cancer is DEFINATELY a head game, some days I feel so positve and others I am a complete mess. I wish we could all get together for coffee too, that would be a great time for all!! Hope all are having a great pain free weekend
0
