Bone Mets Thread
Comments
-
Cathy,
Hoping your scans were good and show excellent results. Let us know how things go on Monday.
Sending positive thoughts and prayers your way.
Laurie
0 -
Hi Meja, I also was diagnosed with met in right femur, and liver oct 2016. Had chemo, targeted therapy. Still have herceptin and immunotherapy every 3 weeks. Can't help with the Navelbine, sorry. Also have zgeva 6 weekly. I'm her2+ too. Doing fine. I'm in Spain.
0 -
Welcome, Meja. You are in a hard time of transition, but you are among lovely, warm people here on this thread and things will get better. I've been on this thread since it started back in 2012 (have been on the BCO boards since 2007) so I have had a good long run here and I believe you will, too. Take care of your happiness, that's the main thing.
There used to be a thread here on BCO for Navelbine gals, but I think they often referred to it as "navy bean", maybe even in the name of the thread. You might search for that.
I would love to see Denmark someday! All the best to you.
0 -
Delvzy,
What treatment are you on? Ibrance did a real number on my red blood cells and as a result, my hemoglobin kept dropping. It took months to recover. I’m on Faslodex now and my MO has toyed with the idea of putting me back on Ibrance but he’s worried about the anemia which he described as “severe”. Seems some of us have sensitive marrow....
I wouldn’t panic. Lots of things impact the red blood cells.
Hugs. Pat.
0 -
Pat, my red blood cells continue dropping too, although my hemoglobin is doing ok, worries me though. I tried some iron in pill form and it did nothing for my rbc. They dropped me to 100 my Ibrance because of the side effects but it hasn’t helped
0 -
My RBCs and WBCs keep dropping, too, but that's just what chemo and all the other Tx do. We just have to try and get thru it the best we can, ladies.
My platelets are on a roller coaster. MO says I will stay on Gemzar for another 3 mos, so more roller coastering.
0 -
Hi Gracie,
I was dropped to 100 after the first cycle but ultimately didn’t make it through four rounds. My RBC and hemoglobin kept a slow steady decline until I was taken off. As I said, it took months for my blood to recover. I’ve heard of at least one lady who had a rapid drop in hemoglobin that required a transfusion and then the hemoglobin recovered. Go figure
0 -
I got my faslodex shots and agree with you ladies, cannot be done without help. I have spasms, but more like nerve-muscle spasms. could it be that compression of the nerves causing the spasms? don't know really, just guessing. I have lots of pressed nerves and it is scary to move left or right. will it get better? is it just wishful thinking ?
0 -
Lovely to meet u Meju. It's a topsy Turvey world that none of us wanted to be part of, I feel so alone because we used to have a breast cancer support group and that has disbanded buI feel like I am the person that people with early bc don't want to know about. You sound like u have found your mets early so hopefully they will zap them quickly . Denmark sounds lovely I believe u had a long winter. We have had a long hot sum
0 -
Lovely to meet u Meju. It's a topsy Turvey world that none of us wanted to be part of, I feel so alone because we used to have a breast cancer support group and that has disbanded butI feel like I am the person that people with early bc don't want to know about. You sound like u have found your mets early so hopefully they will zap them quickly . Denmark sounds lovely I believe u had a long winter. We have had a long hot summer
0 -
Pat I have been on Letrozole only since my extensive mets were discovered 18 months ago. I think what has worried me is that someone on this forum mentioned that they had rising TM's and hemoglobin that dropped (iron is high) and they found that they had bc in their bone marrow. I am worried sick about it all
0 -
hope, it sounds like whoever did the injection hit a nerve. Or was close enough to cause damage to it. I don’t think it’s usually like that. Maybe have her pick a different spot next time. I like mine really high up and near my hip. I never seem to have trouble there. Sorry. I hope it’s better next time around.
Sunset
0 -
Good news first: PET scan shows no organ involvement. This is what I prayed for, hard, for the last two weeks
Bad news: it is in every bone from my skull, jaw, shoulders, sternum, multiple ribs, complete spine, both hips and thighs.
Seems this thing came back like a wild fire. All I know right now is they are adding radiation to my left hip because it a hurting now. We are still waiting for biopsy results on the largest spinal tumor and that will decide the drugs I'm to take to treat all the numerous spots.Somebody tell me that I will walk again without a walker, drive again, take care of myself again?? I'm feeling pretty hopeless.
0 -
with physio bigoeaches I did
0 -
Big peaches-Just hang in there. You got this. There is no organ involvement, so that is great news. You just have a speed bump right now. Relax, stay busy doing something to take your mind away from this information. Do something you can do that you enjoy. Learn to make each day the best day you can make it. Before you know it, you will be over this bump.
Therese
0 -
Bigpeaches- Pain, plus the inability to do things like we used to, really work on our heads. IMO, When we hurt more, We hope less.
It really is good news that it's just in the bone. Sending hugs and hope they can help you regain some strength and normality soon!
0 -
Bigpeaches, mine is extensive as well and so far in bone only. That’s actually good news! I was having a lot of pain which I thought was just aging, but after a year and a half I have very little. Lower back occasionally gives out on me (just hurting) when I do too much but I can usually alleviate that just by getting off my feet and resting it for a bit.
0 -
Gemzar put me in the hospital after 2 infusions, with vasculitis. My hemoglobin dropped to 7, my platelets to 49, and I required a transfusion. My CRP was 430, my sed rate was 129. I had 2 cardiac events and now have angina (another episode Friday requiring ambulance and ER visit) and perhaps CHP. I’ve been switched to abraxane now, but I’m feeling very fragile and vulnerable. We never know what rare side effects we might be susceptible to. It’s getting a bit scary, TBH.
0 -
Big Peaches. Hang onto to that Pet result. Sending hugs and positive thoughts your way. Be kind to yourself. Give treatment time to work . Please don’t lose hope. We are here to listen any time,0
-
Magdalene, that is terrifying! I am so sorry. Please rest and recover, and keep us posted! I looked up CHP but did not find any definition for a health related issue. We will all be hoping and praying that abraxane will be gentle with you and do the trick. Hang in there!
0 -
Mags- so sorry to hear that Gemzar has caused so manyproblems. thinking of you and hoping your new treatments are effective without terrible SEs!
0 -
Hello Ladies, I heard about this thread while I am on Abraxane. Big Peaches - I just want to let you know there is hope. In March 2017, I "blossomed" according to my MD and the scan found over 60 bone mets, tumors in my liver, lung and lymph nodes. My MD started me on Taxol which I had in 2007 and it took 6 months to work. Sorry the pictures are so big, couldn't shrink them down. For the first time since 2014, I was in remission.
I stayed on Taxol for another 3 months until my December 2017 scan which found new mets on my cervical spine and left hip. I did radiation and started Abraxane/Avastin. March scans showed radiation worked, however 4 new mets showed up on my spine and right hip. Those damn little buggers. Now I am on Abraxane/Avastin and Olaparib. Finally, this morning woke up with no nausea - it took 7 weeks to get over the nausea from the Olaparib. I take this medication 2x per day and Abraxane/Avastin IV every 3 weeks. My next PET/CT Scan will be in June. So again, hoping for stable mets or death to them! I am lucky nothing has come back in my liver, lung and lymph nodes. My MD calls me a "bony" type of gal. Praying for the right drug that will work for you. Hang in there. Lisa
0 -
Delvzy...I believe MRI is a better way of assessing whether mets are in the bone marrow. Bone scans apparently can reveal it but not as well as MRI. Sorry I don't know any more than that. About your anaemia, cancer itself causes anaemia, as do Femara and Ibrance, especially Ibrance, which you probably already know. I'm probably clutching at straws in an effort to be positive but it is a big drop from 120 to 87. My haemoglobin used to be 110 to 120 before Ibrance treatment and now sometimes it drops to the 90s but is mostly around 100 after a two week break from Ibrance.
Meja....hi, I'm sorry you've found yourself here. We all understand what you've been through the past weeks, we've been there too. I can't comment on your treatment but I wanted to send you some support and, hopefully, comforting thoughts. The first tip I always share is not to look at the future but to take small steps, focussing completely on where you are now. The future lives in our imagination and can be a fear-filled place and mostly those fears never happen. The second is worrying is futile. It changes nothing, all it does is make it impossible to have any quality of life. When we find ourselves at Stage IV the most important thing in my opinion is quality of life and we all have to find our own way of giving it to ourselves. Although it's important to keep our spirits up as much as possible, we all go through stages of grief as we gradually acknowledge that life will be different from the way we'd hoped it would be so don't try to suppress your emotions. They are real and totally understandable. Cry as much as you need to, especially in these early days. Eighteen months out from diagnosis and I still have a little weep most days, just for a few moments, and then I pick myself up and find something to cheer myself up - usually gratitude for what I do have, as opposed to bewailing the things I no longer have - but it takes quite a while before you can get to that stage. Time and a lot of emotions. Take whatever support and help suits you wherever you can get it. Mets to the bone are treatable but tend to respond slowly so don't expect too much. My mets are extensive, they're everywhere from skull to femur but, with hormonal treatment, so far they have become stable and remained so. I'll find out in a couple of weeks whether they still are. Bone mets tend to remain contained for longer than visceral mets and, although it's hardly a comfort - we'd rather have no mets, obviously - I take consolation from that. Sending you lots of hugs. Keep in touch with us. We care xx
0 -
Mediclisa....wow what a great attitude. I have extensive mets too, they're all over me but no organ involvement for which I'm more grateful than I can say.
BigPeaches....I'm sorry you're feeling so down even though your news that there's no organ involvement is good. I can understand your shock at having so many bone mets. It's tough getting used to the idea that life can't be the same. I've battled that front for the past eighteen months and have at last come to a degree of acceptance over the fact that my oncologist has forbidden me to do a lot of things until/unless I get some regression. To be honest, I can't do them anyway because of pain and stress fractures. I agree with Iwrite.....pain does mess with your head and makes you lose hope. The good thing, if there is something good, about bone mets is that they tend to stay contained for longer but the downside is that treatment is slower so we bone mets girls have to be patient is how I see it. My MO has told me that as soon as pain makes it too difficult to complete what I'm doing I must go and lie down and I find that definitely works. I use an electric heat pad under my back and it's quite nice lying on that with a book on a cool day now that I've stopped fighting. Don't get me wrong when I say I've stopped fighting. I haven't given up or given in, I've just stopped the thoughts chasing themselves around in my head and decided, in those immortal words, to "give peace a chance". Give yourself a rest, take time out and don't stress too much. In time you will be walking freely again. One year ago I was prostrate on my bed, unable to even turn over to my side. I slept on my back for four months until suddenly one night I could turn onto my left side! It was like heaven. I couldn't do more than shuffle slowly along but now, by doing gentle stretches every morning and being very very careful not to overdo it, I can lie in any position I want to except my tummy and I can even squat right down to the floor and get up again by pushing up from the floor with my hands, being very careful there's something to hold on to as I come up. It can be done so don't give up. Be gentle with yourself. We all love you. Sending hugs xx
0 -
Leapfrog, and everyone, thank you so much for the encouraging words, it gives me so much hope! I am so glad I found this place!
0 -
Leapfrog,
Thank you for your post. It really made my day. I agree completely with everything you wrote. Acceptance of our disease comes slowly, but I've found a strange peace by living day to day. I no longer worry about the number of bone mets I have (I have them everywhere), and instead am enjoying the nice Spring weather and trying to decide what flowers to plant this year.
I am so grateful for this blog and for all of the brave women who are living withMBC. I’m hoping that all of us can find peace in spite of the battle.
Laurie
0 -
Lulubee, that was supposed to be CHF - congestive heart failure. Since I haven’t seen a cardiologist yet, that’s not a definitive dx; my oncologist seems to think it is that, but my PCP is of the opinion it was just overload and will resolve over time. I do hope she’s right!
As for the angina, there are 2 types, stable and unstable. The event I had Friday (and apparently in the hospital as well) was an unstable angina. Insidious because it generally occurs when the body is inactive, sometimes even asleep. I was just sitting in a chair, completely inactive, when it began.
The ER doc recommended increasing my dosage of Imdur (that’s the long-acting nitro med) to double; I tried that Saturday and my BP dropped to 100/60 - just barely in the safe range. So I have stayed on the lower dosage for now. To further screw things up, he sent both dosages to the pharmacy! Did the same with the Coreg, the beta blocker I’m on now. Sheesh. And I don’t know which to return until I see the cardiologist next week.
Thanks everyone for the encouragement. I do try to stay positive and upbeat but sometimes the trying is very trying, if you know what I mean and I think you all do.
0 -
The best weapon we have against this miserable bastard of a disease is to live in the moment.
Not possible everyday, but the more we dwell there, the more peace of mind we can have.
Magda-I was remiss in not acknowledging the medical crap you have been enduring when i wrote to you on the other thread. Those lab values are just spectacular! Your cardiologist will get you squared away; a lot to balance, but doable!
BigPeaches-you are going to feel a whole lot better in time; pain sure takes the joy out of life but it will come under control such that you can smile again.
and to all of you dear MBC sisters, may the force be with you! Love, MJH
0 -
Mags, you have really been through it! Prayers for you and that they get you to feeling better and you get some healing on the heart arrythmias
0 -
Leapfrog, totally agree with you. I, too have learned to take a break, listen to your body. I feel better for recognising when to rest. Also have stopped thinking of the future as you say, live for the moment.
Magda, I'm sure your medical team will get you sorted. Thinking of You
0
