Bone Mets Thread
Comments
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Lita- I wonder if she is in San Antonio at the Breast cancer conference - still someone is around who can tell you the results!
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Maire...the last thing you are is selfish. You have so much going on yourself and you care about everyone else. What's more, you're starting a new treatment, which is scary in itself, especially with a break between treatments. If you read on you'll find out why I feel guilty. We all seem to be capable of taking on others' worries and thinking that they're worse off than we are. But so many are worse off than I am.
Schoolmom, I agree with whoever it was (sorry whoever it was, it's so hard to remember the names of who said what once you start posting) who said never, ever look up MBC on google. It's a general overview and doesn't apply to everyone and can scare you for no good reason. Googling really isn't a good thing for those of us in Stage IV. Now, having said that, I have extensive mets to the bones. They are everywhere! And lots of them - skull, neck, shoulders (working my way down!), sternum, ribs (lots in the ribs, at least one on every rib), my entire spine, with several stress fractures in my spine and a lot in my ribs, hips and femur. I'm in extreme pain, although I think it's starting to improve after twelve months on Ibrance and Letrozole. And, coming to my point, I feel guilty. I feel guilty because my mets are only in my bones and I'm ER+, PR+ and HER2 -ve, which is good because that's the easiest MBC to treat. I feel guilty because so many others in this group of brave ladies are in a much worse place than I am.
Someone else (sorry again) mentioned not having understood what someone said about living in the moment. It might well have been me/I? (my grammar has run away to the same place as my memory) who said that because it's what gets me through. I don't believe in thinking about what might or might not happen in the future because we just don't know so living in the moment is the safest place to be.
Sadly, my marriage has broken down through the stress of this disease. I didn't realise before what a fragile, delicate little thing my marriage was and how much I nurtured it and nursed it along, keeping it wrapped up in cotton wool. Unfortunately, my rose tinted glasses fell off recently and I can't find them. I don't know where I put them and without them things look very grim. I'm not sure whether I've mentioned this on this thread but I have on another one. I've moved out of home and into my son's studio apartment and I like it a lot but I'm having trouble putting up boundaries to make my husband understand that, without my rose tinted glasses, I don't really want to see him and I don't want him to believe, as he seems to, that he can just come here when he wants to.
Lita, how are you going?
We're all praying so much for each other that surely our prayers will be answered. Sending everyone hugs, especially those I've left out. I've been missing for a few days as I've been musing on what to do and setting up a nice garden on my balcony.
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What’s your opinion? My left shoulder has had crepitus off and on over the last few years. It hurts. It crackles. Heat, Advil and movement tend to make it better. Well, this started again a couple of weeks ago and hasn’t improved. It usually doesn’t last weeks. Now my underarm aches and the front of my chest (exact opposite of my shoulder blade) aches. My cancer mets are to my lymph nodes in this area... subpectoral, axillary, sub and Supra clavicular and cervical. Could it be related? Would you be worried
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Leapfrog. Thank you for sharing. I am off google and going with MDA,
Just 6 weeks into this second medical mess. First fall bladder surgery then Mets discovered. My hubby has had ups and downs. Father just passed away and we come home to this. He gets stressed so he sits in waiting room while I see docs and give him summary. Drives me, waits on me but some days I see the caregiver stress.
I try to send him off to do his normal errands and tell him I am ok at home for a while. Typically I would be at work, he is retired. Does chores, cooks, cleans, washes clothes, helps with grandkids etc. I am blessed and try to remember all he does .
Sleeping on couch for last 2 weeks due to pain in bed...but he tells me to rest wherever I can.
Take care.
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Got my days mixed up, appointment is today. Will find out if femera has quit working. I know so many feel tm’s aren’t reliable, but mine have been and all three are up. I’m not having any new pain, but have started having a little cough that bothers me, but if there was anything there I would think it would have showed up on the ct scan. MO said sometimes small liver Mets don’t show on a ct scan and some small bone Mets don’t show up. We’ll see I guess. Hoping and praying it’s just a fluke!!!
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Hugs Gracie - Progression or not there are solutions. Hang in there... you will be able to deal with good news oar bad.
>Z<
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Best wishes for some good news Grace.
Schoolmom, the DH means well like mine. I try to keep him busy outside the house so he doesn’t hover. I’m blessed too.
Leapfrog it must be hard to set up boundaries in your situation but you need todo what gives you peace right now. Thank you for your support I keep you in my prayers. To deal with such intense pain is so hard.
Picked a stomach flu probably from grandkids. It was bad. I sort of felt faint so I dropped to the floor and crawled to the bathroom. . Didn’t know whether to laugh or cry. I felt like the” help I’ve. Fallen and I can’t get up” commercial. It terrified me that it came to this. But don’t want to break anything. Not used to feeling so week. Even ACT didn’t make me feel week. I must be getting older. Still comparing my self to my mom who could run rings around me at this age 70.
So no Advil or Aleve for 24 hours and lots of rib,spine and shoulder pain. Even my skull and jaws hurt. Is it a virus or is the mets getting worse. This is 3rd virus I’ve picked up this fall. Is the neutropenia causing it.? I see mo on Friday. Starting Herceptin . As always lots of questions. This time I’m writing them out in complete sentences.
Take care all. Maire0 -
Maire, it could very well be that your resistance is low. I wear gloves whenever I go out anywhere. They remind me not to touch my face, eyes, etc., and if I go to church or other crowded places, I wear a mask.
I've had a runny nose for days now....might be allergies. My nose has bled a couple times too...probably the cold air.
Wrote to MO RE: my brain MRI on Thursday. Haven't heard anything yet.
L
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Maire, I will be thinking of you this week. I hope you are feeling a little better today.
Well ladies, I am mired in the swamp of scanxiety! Tomorrow is the big day! This one is particularly bad, because I am afraid to know how much progression I have. I am also terribly afraid of scan itself, now that the claustrophobia has regained its foothold. For the first time in 51/2 years, I am going to have to be drugged. You have no idea how hard I fought this battle back when I had to be bolted to the rads table, with a mask from the top of my head to below my shoulders, everyday. And now, what is this progression going to mean? Is it in even more places than the MRI found? I wish I had never had that stupid MRI, then I would be going in tomorrow clueless. Sometimes, denial is great! I am so afraid. My body hates medicine, I always have a terrible time adjusting to new meds. Oh and if it had a small percentage se, that will be me, or better yet, a never heard of before, that will be me. I can barely think straight tonight and Dh is working late, so I'm sorry for the rant, I just needed to get it out.
Hugs and prayers, to everyone facing progression. And to everyone else facing this disease. Lita, Kandy and momall, I am praying especially hard for you!
Claudia
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Claudia, Remember you have all of us there with you, giving you strength. Take what ever drugs you need to get through the scan. I had the mask too a number of years ago and hated being bolted down to the table. But we got through that and you will get through the scan tomorrow too. I am also your side effect sister. Same with me. I get the odd and rare SE's so you are not alone. My MO keeps telling me how challenging I am regarding tx. Breathe, breathe, breathe and try to distract yourself a bit tonight with a movie or mindless TV show.
Lita, Hoping you hear soon and sorry you have to wait. It's so hard.
Maire, Guessing its the flu making you feel so rotten. Sorry you have to deal with that.
Best to all......
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Ok, so it's official. Femera has quit working. I have five new areas, but the internal organs are still clear. One spot on the liver that he's pretty sure is a cyst, but he will keep an eye on that. So, I will be changing to Ibrance/Faslodex, starting next Monday. Will stay on Xgeva shots too. Am better...isn't it funny how that happens? It's the waiting. IT sucks! So I qualify for help on the Ibrance, so it will be paid for, (thank you God!). Because there is no way I could pay for it. Just wanted to let you know what's going on. Got through the day without taking anything for nerves, YEA!!!!! Thanks all of you for holding me up!!!!!!!!
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Praying for you Claudia1!!!! You can do this!!!! Will be praying for you tomorrow!!!!
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Claudia, I can imagine how you feel, but scary toughs are not helping. And tomorrow the news maybe good. My daughter always remind me, never cross the bridge before you get there.
I'll pray for you! Hugs
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Lindalou, that is what my MO says too! That's ok, we just challenge them to look for other options. You are right, we did get through those masks! Thank you for your kind words!
Thank you for your support everyone! This too shall pass.
Claudia
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Had some bad news today. Tumor markers have been hovering in the 300s for seven months. Test on 12/6 and markers rose to 528. I am freaking out.
I have been on Letrozole and Ibrance. Started Letrozole in February then started Ibrance in August. My white cell count has tanked again and again, started with 125mg then 100 now 75 and still tanked and we were going to decide this week if I should quit Ibrance - taking another wbc blood test on Wednesday.
I don't know what to think of this. Flare? Failing Letrozole and Ibrance? What is weird is everything else on blood work is normal. Liver enzymes were slightly elevated above normal last time but this time I did not have my wine and stayed clean and all back to normal.
Any thoughts would be greatly appreciated.
Chats
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One more thing I forgot to mention. My eye muscles are hurting when I look up down or sideways. Going on for the past three or four days. Very dry here in CA, fires causing a lot of that. Could it be dry eyes? My eyes tear constantly from the Letrozole. Anyone have eye problems from the drugs?
Chats
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Gracie I'm glad it's in the bones. I am glad you have a good option you can afford. Otherwise it sucks but stick with and you will get through it. I was thinking of you. Thanks for the update.
Dani is on my mind.
Z
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Gracie good luck with the Faslodex and Ibrance. So many here have a good result with it. Glad you will get some help with Ibrance.
Lita Thanks for the info. The gloves are a good idea. A million Years ago when you went to school or work on the subway you wore white gloves. Now I see the sense in it. Hope it’s just allergies.
Claudia take what you need to get through this. I always toughed it out and I’m realizing taking something to relax you during a procedure is a better way. Sending good peaceful thoughts to you tonight and tomorrow
Maire0 -
Chatsworthgirl- TMs can jump up and down, some speculate that the ups are cancer dying. My MO would worry about a consistently rising tumor marker- not just one up number. What do your scans show? Many people have some low ANC (neutrophil levels) on Ibrance- and MOs seem to manage it a bit differently. Usually if your ANC is 1 (or 1000) it is high enough to start another cycle. Some people need to wait two weeks between cycles to get it to 1 to restart another cycle ( I almost always do) Some people are on 125 mg, others 100 mg and others 75 mg. Some people have to be one week on and one week off to manage the blood tests. Part of it is how healthy you are and side effects and the art of medicine.
Sounds like your liver let you know that it can't handle alcohol and the ibrance and letrozole.
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NKB,
Thank you for your reply. My last scan was February when we found out that I innumerable bone mets. None since then. My onc does not like to do it, he feels that it is too much radiation.
We were discussing my going off Ibrance. Not sure what we will determine on Wednesday, my next appt. He wanted to see what my wbc was after a week off Ibrance.
I have known for myself that I am very sensitive to drugs of all types. I have never taken many drugs in my life so maybe I am just too much of a "virgin". LOL
We didn't discuss ANC.. The onc talked about granules being the telling part of the wbc and if that was OK then we could continue. My last wbc was .1.1 and he said when it got to 1.0 that was the end point for using that drug as my wbc was too low even on 75 mg.
I have charted my blood work and one of the things that I look at is Alk Phos which is what the blood carries with bone dissolution. It was going down consistently until this last test and now is higher than the last test. Bum.
My greatest wish right now is that the jump is a flare due to the Ibrance and Letrozole kicking in. One can hope.
Perhaps we will move on to Faslodex. My onc had suggested this as an alternative to Letrozole. We shall see.
Thank you again for your response.
Chats
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Chats-Seems like you need another scan to see where you are with your mets. Maybe he can get you a PET if he is worried about the radiation-can't tell how you are doing without some sort of scan. Faslodex is quite doable (2 big shots in the butt however) ANC is multiplying the percentage of neutrophils times your white count. A white blood count of 1.1 is low.
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Nkb
Just got off the phone with the Onc. We are going to Faslodex alone to start and add something else later depending upon my response.
He felt that I did not get the response from Ibrance that we hoped so we are discontinuing it.
I see that you are on Faslodex. Would be interested in what your tumor markers are showing if your onc does them.
Chats
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Well just had radiation consult for mass to spine. Wants to do IMRT photon rads ASAP to prevent further growth and spinal cord damage. Wow this is scary. Still have consult with MDA Thursday to compare plans but can start local rads Friday
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schoolmom,
I have read on other posts that radiation is very successful on spinal tumors. It works.
Chats
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Schoolmom. I've had IMRT and SBRT on my spine and ribs. Spinal cord damage can occur, and in my case, most of the tumor(s) were eradicated, but I did need to have spinal fusion surgery regardless. Good idea to always get a second opinion. I wish you well.
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thanks so much
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Chats- I'll PM you with the my TM's
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schoolmom, pm me if you have any questions as you go forward
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Deanna,
I love your post. That made my day. I, too, often get caught up in stats I read from various sources, and honestly, even our oncologists can only guess at how long we have. So onward! I'm encouraged and ready to enjoy some fun and time with my family and friends over the holidays.
Merry Christmas to all of you on this site, and thanks again for the uplifting words you all share to get us through this journey.
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Question. What has worked best for you ladies to manage pain. I've tried 3 or4 prescription meds and nothing seems to work
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