Bone Mets Thread
Comments
-
I am so sorry you have reached this point Babs. From your profile, I can see you have put up quite a fight against this disease! In terms of palliative care, what is your onco suggesting?
Know that I will keep you and your family in my prayers.
MJH: Wow, just hearing someone out there finds Xeloda tolerable, gives me a glimmer of hope. I'm thinking more and more about giving it a go. I'm seeing my onco in 2 weeks time. Will keep you updated.
Lynn: Thanks for the tip about "Udderly Smooth". I get a VitB injection once a month at the moment. Will chat to my onco about maybe upping the frequency.
Mike: That's fantastic news!!! And happy belated birthday to your wife. :-)
Have a good week everybody!
Janine
0 -
Baywatch.....I've looked at how far behind I am and there's no hope I can read 4 pages of posts and I have no idea whether you've been sufficiently reassured but my tumour marker started at 900 and within 5 months it had gone down to 390. I was on cloud nine then it started a slow creep up, zig zagging on the way, until now it's back jumping up and down between 600 and 710 but my bone scans are stable. My oncologist is keeping me on Ibrance and Letrozole because, as someone else pointed out, we can't afford to keep changing treatments unless it's a true progression. I'm not considered to be progressing despite the rise but I know he's keeping an eye on the markers and if he's concerned will send me for another scan.
0 -
I was on Xeloda for over a year. It's tolerable once you tweak the dosage and get into a routine.
Start using creams (not lotions) on hands and feet immediately. Had some diarrhea, but hardly any nausea. Fatigue not too bad.
Gemzar is a far different story, however.
L
0 -
I was on Xeloda for over a year. It's tolerable once you tweak the dosage and get into a routine.
Start using creams (not lotions) on hands and feet immediately. Had some diarrhea, but hardly any nausea. Fatigue not too bad.
Gemzar is a far different story, however.
L
0 -
I don't contribute much but read this thread often. Babs, like everyone else here, so sorry that you have reached this crossroads, but glad that you will soon be treatment and SE free, and hope you are given a lot more time to enjoy your beautiful family.
XO,
Andi
0 -
Lately I dread coming on here to catch up with the news and today I know why. I'm so sorry to hear about Patty.
Babs.....I'm so sorry you've reached the end of the line with treatment. More sorry than I can find words to express it. There have been too many of us lately coming to that stage and it's just heartbreaking to know you have. You've been one of the most inspiring of my MBC sisters and while I can understand why you've made this decision, I really wish it didn't have to come to this but I send you all the love in my heart.
Mike...I'm delighted with your wife's good news.
0 -
Sadly, my 38 month run on Ibrance/Faslodex is coming to an end (new lesions on ribs). MO is suggesting Aromason/Affinitor. Can someone please point me to the proper thread for information on these drugs? So nervous about starting a new regimen
0 -
Masonsmama, Why not Xeloda? I don't know anything about A/A, just know that a lot of people have gone to Xeloda.
0 -
Masonsmawmaw: I just came off Afinitor/Exemestane and onto Xeloda. I did fine on Afinitor as far as SEs went. Obviously it was not effective for me as I was only on it for about 6 months. There are multiple Afinitor threads on here. Go to the menu on the top left hand side of this page and select "Search". Under key words enter Afinitor and click the "Search" button below. You'll have to scroll through the pages to see if there is one for the Afinitor + what ever other drug you're on. I wish Afinitor had helped me more as I had minimal SEs from it. Good Luck!
Babs: I am so sorry to hear you have reached this junction. I wish the best for you and your family.
Cindy
0 -
BigBhome- not sure why she is not suggesting X. Hoping for some more feedback so that I can make an informed decision. There is more knowledge on these boards than any MO can provide!
0 -
Hey ladies, I have been a lurker on this forum since my wife was diagnosed in February 2018 of stage 2b lobular breast cancer at 42 years old. We have young kids 4&9.
After she finished chemo (AC+Taxol) the radiation onc ordered a routine CT of the thorax for mapping for radiation. They found a couple of spots on her vertebrae. Further scans led to a bone biopsy of T11 which confirmed our biggest fear. It was positive for breast cancer. PET scan showed no other disease
We got a 2nd opinion from a radiation oncologist who ordered an MRI of her thoracic and lumbar spine. We were really optimistic that this was just one lesion confined to T11.
Yesterday we got the news that there were a total of 5 spots on her spine. T10, 2 separate spots on T11, L5, and one on her iliac crest.
To my understanding this is still considered oligometastasis since it is 5 or less. Would you ladies agree?
Her medical oncologist has started her on letrozole and we will start ibrance once it arrives in the mail.
My big question is concerning radiation of these spots. The 2nd opinion radiation oncologist does not want to radiate these five spots. He wants to see how the medicine does and watch and wait. She is currently asymptomatic. What are y'all's thoughts?
0 -
Talental, based on my own experience, I would agree that watching is fine. I was diagnosed in November 2016 with a single iliac lesion and considered oligometastic (which I do believe your wife would be), it’s great but it can quickly change, try to balance hopeful with vigilant. For the radiation, it’s typical to save that for areas causing pain.
0 -
I concur with Illimae, As long as she isn’t at risk for fracture or experiencing pain, then save the radiation as a tool for later.
The Ibrance and Letrizole can make a big difference.
I’m curious though that the chemo didn’t help those spots? Did they mention if the sites looked sclerotic? That would mean they are healing. If they aren’t, I’d want to ask a few questions- I’m assuming the pathology was the same
0 -
Just weighing in... sclerotic does not necessarily mean they are healing but may indicate that. Mine are all are sclerotic but are still active. It's a function of how aggressive the tumors are. If they are slow growing then the bones have the ability to mount a response which includes laying down more bone. If it's more aggressive/faster growing then the body reacts by trying to shed the cancer, leading to bone loss.
I agree with both Jenn and Illimae, watching is fine.
0 -
Thank you ladies for replying so quick. We were taken aback yesterday that they didn't recommend radiation. We felt sort of defeated. It's good hear that we are on the right path.
Regarding the chemo, it's so hard to know since she wasn't scanned prior to starting treatment.
Both oncologist feel like these spots were there at original diagnosis back inFebruary. The CT scan mentioned both lytic and sclerotic.
The rad onc did say she has low volume disease and said we will treat this like a chronic disease.
We are just so overwhelmed and all we can think about are our little girls.
0 -
Talental, it took us many weeks to adjust to the diagnosis of bone mets. My hubby and I have benefited from group support at our cancer center, and individual counseling. Many live for years while managing cancer even at stage 4. I promise to pray for each of you, with love and understanding. Louise
0 -
Talental,
I am so very sorry you and your wife have found yourselves in this place. But you will find an amazing support network here to help you maneuver through this nightmare disease.
When first made aware of possible spine mets in L4 last May 2017, I too was hoping for oligomets that could be treated for "cure". But I soon learned that once the Ibrance/Faslodex started working, many more sclerotic lesions showed up (sclerotic lesions are assumed to be a positive healing response but are not ALWAYS indicative of healing...). I was told that they become more evident once they r sclerotic. Oligomets treatment for possible cure was never going to be an option for me.
Sclerotic vs lytic vs mixed lesion concepts are very frustrating and difficult to monitor for tx response. I have been at this now since Jan 2018 (started tx after dx was confirmed in Dec 2017) and things just keeping getting murkier and less clear on how I am responding to tx.
My suggestion for you is to learn as much as you possibly can about the terms related to dx and tx as well as learn all you can about your wife's cancer pathology (type of cancer). There is great knowledge and street smarts in this group that you will find nowhere else.
We all hate you are here but very glad you found us, however you found us. We will be here to help you and your wife through the very best we can.
Gumdoctor
0 -
Hi Raven, For my bone mets, ONC had me on Monthly Zometa (+ daily Letrozole) for a year now; (However due to my schedule, it was usually every 5-weeks). Then my hair started falling out. Now I'm at every 6 weeks, for a while, and no more hair falling out. Someday Zometa will be every 3-months, then eventually 6-months.
New info: Just got results from 2-year MRI. They somehow forgot to look at my hip bones last year. "Rx. Cane and a Walker; Rx. Don't Fall!". Multiple Bone mets over right and left hips, femur neck and L5. Rx another MRI for L5 and spine being scheduled. I asked about surgeries (cement or iron rod, for femur neck), as Pub-Med studies show "reasonable and appropriate". But no, ONC says not for me. Darn, I'm not ready to lose driving nor mobility! So I'm using my new companions (cane and walker) and doing daily P.T.
ONC also offered me Ibrance. Hmm, those side effects are ones I just got rid of... So, I am holding off. Pain around hips has begun; (I have Gabapentin if it gets bad, but then can't drive). Daily Exercise and walking seem so very important, for overall muscle and cardio health, so I love using the walker for safety. Avoiding all winter snow and ice.
We all are unique. Glad your Zometa IV is only every 3-months!
Hugs and Good Luck to all of us! "I'm great, from the waist, up!" Love, Diane
0 -
Hi Raven,
26-years ago, with my first Dx in 1992, I was put on CMF (+VP). And I'm still here! ONC wanted me on it for 12-months, but I quit after 6-months, rebel that I am, due to SEs. Yep, lost hair, but it grew back. So it's been well tested, around for a long while.
Hugs, Diane
0 -
Hi Janine, I feel your words... me too...
Thanks for inspiring me that hip mets can still allow years of walking and hiking!
We have a thread about, "No Treatment? What if I let Nature takes its course..."
Here's to Quality of Life! Wishing you and your Partner peace and bliss, Diane
0 -
Grace, I've been using my walker (it has a built in seat for when I get tired), and a cane ever since I was Dx'd.
You have to do whatever you have to do to stay safe - no shame in that. I have spinal mets, femur mets, hips mets, sacrum mets, illiac mets, bone marrow involvement and organ involvement, along w/the brain mets, which affect my balance. Yeah, I look like an old woman hobbling around, but it is what it is.
Take care, L
0 -
Talental....I was diagnosed with extensive bone mets in November 2016. There are 3 tumours in my thoracic spine, 2 in T 7,8 and 9 and one in my lumbar spine (not sure which one), almost every rib is involved and there are tumours in my shoulders, neck skull and sternum, as well as hips, pelvis and femur. My oncologist has told me I have a very heavy load of cancer. I was diagnosed as Stage IV from the beginning. Radiation was ruled out as it can damage the stomach and duodenum and I can vouch for that as I had five doses of palliative rads for pain which did nothing for the pain but did give me extreme nausea. Immediately after the palliative rads I was put on Letrozole and Ibrance and my mets responded immediately. My tumour marker dropped radically and at 3 monthly scans I have been reported as stable every time. My rib tumours are no longer mentioned. My oncologist is going for keeping me stable and buying time. So, to sum up, my disease is widespread and I'm on my nineteenth cycle of Ibrance and, without any other treatment apart from Ibrance and Letrozole my mets are under control. I understand completely how frightened you and your wife are; this is a scary disease and it takes a lot of adjusting to the fact that you are Stage IV but be reassured by all of us who tell you that it's possible to live a good and long life with Stage IV bone mets. I expect to be around for a long, long time yet despite my heavy load because the bones tend to contain the cancer and, with Ibrance and Letrozole or a different Aromatase Inhibitor it can be described as a chronic illness once you get over the fear. We are all different in how we approach the fear side of it but if you stick with us on this thread you will find a lot of support.
0 -
just curious, I was diagnosed stage 3 0n 2/14/2013 then stage 4 1/2018. My RO told me that the bone mets absolutely had been there since original diagnosis in 2013, due to their size and magnitude. So first of all I went 5 years being stage 4 without even knowing or being treated, I was given tamoxifen but chose not to take it due to side effects. My drs all told me back then that they didn’t do scans without some really good reason in the beginning and they don’t do routine scans either. They told me that it didn’t show to save lives or add any length to life so it wasn’t part of standard treatment. My family has been extremely upset by all of that, believing that the earlier it’s caught the better. To be honest earlier detection would have avoided the major surgery I had to have on my hip/femur this year. Anyway did y’all have scans b4 stage 4? Did your drs tell you that it was standard protocol to not do scans? Within the 5 years I did have complaints from time to time that were dismissed as after surgery pains or just arthritis type pains. The pains didn’t continue to get worse so I always figured they were right, until they weren’t and that’s when it got worse and worse, they finally ordered scans and saw that my bone scan is basically black spots on every bone from head down past knees. So on one hand I lived 5 years of pretty blissful living believing I had kicked cancers butt and was pretty healthy. I wouldn’t want to go back and screw that up. That probably would just mean that I would have started tx and dealt with nasty se’s since then. But also it would not have been soooo widespread in bones and plus liver and lung involvement too. My MO continues to say that there would have been no benefit, it wouldn’t change your survival rate. How do y’all feel about that? I kinda feel like in the beginning we should have some scans, and maybe yearly after that? Just to make sure that if the cancer does come back it doesn’t have the chance to take over the whole skeletal system! Or worse for some other ladies I’m sure. Also though I have heard of other women getting scans before reaching stage 4. So is it standard protocol or not?0
-
Hi chef,
I was given a PET scan at original diagnosis, which came back clear. Unfortunately, mets were found 9 months after I finished primary treatment (in a bone scan that was lost so I didn't know for 6 more months- they said all was well based on organ scans and I assumed they were referring to both scans). Cancer was probably in my bones from the get-go, but was probably too small to be seen initially.
We did tumor markers every 3 months and when they rose out of normal range, they started scanning.
I got the same "It really doesn't matter" talk. But I disagree. Especially in your case where a terrible fracture could have been avoided.
Mary
0 -
Hi Chef,
I am siding with your MO on this, somewhat. I did have a couple of scans over the years but only at times when Iwas reporting pain and thankfully they all came back negative. I was scanned at original diagnosis and then nothing routine. Typically early stage mets would be difficult to see - in my case I believe the tiny little blighters nestled into my pleural lining, hanging out there until something switched the on button.
I know it's difficult for us to wrap our heads around but knowing early doesn't change the trajectory and, for a lot of people, it would mean years of treatment and worry before it is necessary. Having said that, I always felt that I had a right to know as it would certainly affect decisions I made. In particular, as someone single with no dependents, I might have been slightly less fussed about saving for retirement!
It's a challenging issue but from a medical ethics perspective it's a widely held belief that routine scans that look for disease do more harm than good.
Pat
0 -
marylark and saddiesservant, thanks for the replies:) I am grateful that I got to live for 5 years not knowing:) I guess the thing that my family is so upset about is I didn’t haven’t any at all, not one scan upon diagnosis. It’s just one of those things we have to deal with because I don’t know about y’all but it’s always a question people ask, “how are you scans” and I have to explain the whole thing and they never really understood. It’s kindof a catch 22, in my case anyway. But if I had to do it over I can honestly without a doubt say no scans for me until I got them. Even for the mental part! Shoot to be honest I might not even would have wanted them yet lol because I had just gotten a new job after being a homeschooling stay at home mom, I had pain that I was managing with Motrin and heating pads but I was going! Mentally and physically I was so much better before starting treatments. Weird. Anyway thanks for listening to me babble and for sharing your stories:)0
-
Chef, I think I know how you’re feeling. I was finally doing something that I loved and life was good. I found a swollen lymph node which led to a biopsy and PET. Found out my lymph system on left side is eaten up with it along with a place on my spine. Blood work looked great and continues to look great. If I hadn’t found that lymph node, I’d possibly still not know I have mets, at least according to labs. Probably I would’ve started having symptoms by now but who knows? Maybe i would still be living my life carefree, symptom free and side effect free...
0 -
Hi chef47! I also was told scans are not needed unless there’s a reason. I am strongly recommending to my family to get a scan if ever diagnosed with cancer. I’ve had my annual mammograms and Breast MRI, but no scans for the rest of the body. I’m with you...feeling good the last 3 years thinking I beat this. Makes me wonder if my mets were there years ago at my original diagnosis. I’ve gained so much from knowledge and support these threads over the past few years
0 -
Hello all, I was wondering if a Alkaline Phosphatase - ALP blood test is always high for bone mets or can the test be normal or even low with bone mets. Thank you in advance for Amy info you can give me.
xxx
0 -
vampeyes, I just checked my recent test results. The standard range is 35-104. With low volume, stable bone mets, mine have been as high as 67 and as low as 31. Hope this helps 🙂
0
