Bone Mets Thread
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Hi ladies,
I guess I have the same question as Dee. Once I get a treatment that actually reduces the cancer, will the pain go away? See the Ibrance isn't reducing anything. It's the same. Nothing has gotten better, so I wonder when the pain will get better. Today is actually not too bad in terms of pain. It snowed but the sun is shining now and I think it makes a difference.
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Dee,
Great question!! I sometimes think it is good to talk about exactly what kind of pain we feel. It seems like everyone's definition of pain is different in how it feels rather than hurts. I know when I got a pathological compression fracture of my rib (there was a lesion there) that I could really feel the pain and tell it was getting better as the fracture headed. The other pain I have is sometimes burning feeling? In areas that I can't even explain.. It's not a hot flash I don't think because I never sweat or anything, but I can never pinpoint the exact where there is pain or burning feeling. I like to believe it is either from my hormone med (letrozle) or healing mets...
When I had pain in my leg from a lesion that eventually got so bad that I had to have a rod put in to stabilize it before they could even start rads.. That pain was different (of course the lesion was eating through the coritsol bone and I had two lesions in the femur but different areas) but I only had pain if I laid on the floor on my side I could feel it hurt- ouch... As time went on it started to hurt after I walked and sat down in my thigh. It took 8 weeks before they finally figured it all out. It took a pet/ct scan to see the lytic lesion.
I also think that Xgeva shot hurts the area where the broken rib was that makes it feel like it is broken again.
I hope everyone responds to the type of pain they have...0 -
I just caught the most devastating news on Facebook -- on Leah Stein's (Leah_S) page -- an announcement by her family posted 2 hrs. ago about her passing. If you are not on FB, I can PM it to you, but I am reluctant to re-post something so very personal here until her family has time to do it first.
I am truly heartsick and at a loss for words...
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My pain experience is this: I really don't think I've felt any significant pain since the kyphoplasties to heal my L3 and L4 compression fractures. (And I feel bad saying that when some of you are in such pain.) That area, and my left hip which was bearing a lot of the pressure, were excruciating. The pain began in April after jet skiing and was significant, but tolerable with Ibuprofen. I had a lot of trouble lifting my leg to get into the car, couldn't pick things up off the floor, had to only wear flats, etc. I think the actual fracture happened the first week of June. The pain for the next 8 weeks before diagnosis dictated my life. I missed work, family events, fell to the ground in front of my kids' school with muscle spasms and had to be helped up. I actually think I have some small form of PTSD from how bad it was. I was on so many different strong meds and relief just never came.
I was diagnosed on 7/30,I had the kyphoplasty on 7/31 and started Taxotere on 8/14. I think I have only taken Ibuprofen 3 times in those five months. As I tell my MO at every visit, I don't have what I would describe as pain. I definitely am sore and have an awareness of quite a few spots. My right femur hurts for the first few steps after I get out of the car. I hobble for the first few minutes after I get up from the sofa or out of bed. My right rib was sore for about three weeks. It's more sore when I push on it than any resting pain. I feel sparks of not-quite-pain in my skull and other bones after I've had Xgeva. I can't stand to watch my son's whole hockey game. Standing in line at a store is hard on my lower back; it's easier if I have a carriage to lean on. I find that I'm definitely more stiff since starting Tamoxifen about a month ago. The hobbling is pretty pronounced. But once I get moving I'm good. I'm like a sputtering engine and then it's smooth sailing.
Rachel
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Deanna,
Please, please say it isn't true. I am going to check FB right now
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Oh, no. It is true. Baruch dayan haemet. May she live in blessed memory of all who held her dear. I will post on the Jewish Warriors thread as many there knew her
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Deanna, thank you for sharing the news about Leah. I just can't believe it and this is too much to bear right now. May she rest in peace. I'm at a loss for words right now, just too much lately.
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Oh no...oh no oh no. Too much indeed.
Sorry not to post much today, but with regard to pain, I had pain that was waking me up in the night with my femur. This was like 1.5 years after surgery. Got it checked...it was growing pains! Can't win for losing some days. The femur is regrowing and some days it really hurts. Not as bad as before I had the pin put in but enough to make me go for a scan.
That said, the rads took away the really big bad pain, but don't be surprised if you get growing pains!0 -
I love those kind of growing pains!!! I'm sorry to Read about Leah.
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Oh my, we are so deeply saddened to hear about Leah_S. May she rest in peace, and we are sending much love to all who adored her.
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Thanks, mods. I've posted this on other threads but here is the FB message from her children:
This is leah's children writing
ברוך דיין האמת.
לאחר תקופה לא קלה והיאבקות ממושכת, אמנו היקרה לאה בת נחום ז"ל הלכה לעולמה בשעות הלילה. ההלווייה תיערך מחר (יום ג)בשעות הערב. אעדכן מחר בעז"ה לגבי מיקום ושעה מדוייקים.
בתקווה לבשורות טובות יותר.
Baruch dayan haemet.
After a long and valiant battle our dear mother leah bat nachum ז"ל (Leslie) past away last night . the funeral will take place tomorrow (Tuesday) evening . time and place will be announced latter.
Wishing for better news b"h
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Oh no! I'm at a loss for words. Leah had not been posting much lately. May she rest in peace.
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She just had a birthday on 1/8. We both grew up in NYC and even went to the same college. I have been sitting , just stunned, simply stunned. I am going to go to my classroom and get some work done. She absolutely adored children, so I will do it in her honor
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Sometimes we just gravitate to someone on BCO, and although I've never met her, I just had such an admiration for Leah, perhaps because I loved her adventurous spirit -- picking up to go and live in Israel -- or envied her large, loving family. And she was always so sweet and wise at the same time. The news has hit me really hard, too, Caryn.
I'm also finding it hard to talk to anyone about all these losses. I cautiously mentioned my sadness to my DH after we lost Carla and Charlene, and his response was that maybe I needed to find some new friends. Leave it to a man to come up with a practical solution! I'm laughing about it now, but I'm finding that losing mbc friends is a very solitary sadness because it's not easy to talk about those losses with family and friends who love us -- or at least it hasn't been for me.
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I'm very sorry to hear that we've lost another loved one. My condolences to her friends & family.
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Deanna- your husbands response was what I would have gotten. Being new here I only knew of the ladies that are now Angels. My family gets upset with me And suggest that I get off the internet said because I shared with them some of our postings. I learned not to talk about my sadness with anyone anymore.0
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I am sad to hear about Leah. I pray for comfort and peace for her loved ones.
It has been difficult to learn of so many losses recently. It is easy to form attachments with one another here. I need the support and friendship that I find here, but I have shed many tears over the pain and losses that have occurred. My DH used to tell me to stop logging in, but he has since learned that I need to share my thoughts and feelings with the only people who truly understand what it means to have stage IV bc.
Blessings and peace to all of you during this difficult time.
Lynne
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I am sorry to hear about Leah. Another long-timer here on the boards. She was a compassionate soul and will be missed.
About pain continuing after bone mets heal... my experience should encourage you. I took vicoprofen 3-4 times a day for four years because my extensive bones never stopped aching. I was able to wean off of pain meds after Xeloda knocked my tumor markers into the normal range. Now, my bones ached a lot when the lesions were dying off and my bones were trying to heal-- that's something you probably won't hear about from a lot of oncologists, but here on the boards there has been a lot of talk over the years about the phenomenon of bone healing pain, and I can vouch that it's a real thing. I still have lots of holes throughout my skeleton, and I cannot take Xgeva nor Zometa to help with that. So now it's like my bones get tired, if that makes sense. So I do still have mild aches in my bones sometimes, particularly on the last days of a Xeloda cycle. But nothing like it was a few years ago.
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I am so sorry to hear about Leah.
Ladies,
My pet scan came back with two nodes that it up. The cancer in my pelvic did not light up. I felt relieved. Short lived. I met with my radiologist today and my MRI showed two spots in my hips that were not there in my August MRI. He said they were inactive as they did not show up on the PET. I am currently on Falsodex and my tumor markers are 90. What does this all mean? I was shock and cannot remember what he said. I know he is going to meet with my oncologist and come up with a plan. What can I expect? Won't it go to my liver next? I was first diagnosed in 1998. He thought it was odd nothing showed up on the pet.:(((((( Losing hope.
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I'm so sorry to hear about Leah. It's so hard when we lose one of our bc sisters!
Lovemaltes-I see that we were both diagnosed with bone mets on 10/1-OMG
Deanna-I had to laugh when I read your husbands response-my husband's would be the same! I think men are really from Mars sometimes!
Babs
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Deanna it's so weird that I was thinking about her lately. We both thought of her missing here about the same time. And you said you were gonna try to contact her. I only remembered her writing she was going to go to a new Hospital i think. I was wondering what was that made her seek a new place. Thank you for sharing.
Caryn you knew her then for quite awhile. So sorry for the loss. I only saw very few of her posts. I was interested where in Israel she was seeking help. I follow how advanced they are with research there. BD'E, that's all i could say. I also can't and don't share the things that go on here, I will be honest I have to spare everyone of this reality. Dani's sisters have scans coming up for follow up check ups, she is always talking to them, and they are always helping out, I can't barely hold the sadness i feel, but it's devastating for them to hear it on a daily basis.
So I went to the triple positive thread, but no one there is stage IV, the txs they have or had I know, they are a sweet bunch, but I feel guilty in showing up, bcs I would tell them about stage IV (they are scared of what's coming in the future). I would like to know of others that are StageIV, bone mets principally and triple +. if they have ideas. So, you guys think I could post questions there? But the truth is they would not even know. I think I'll start a thread, I don't like it, but I haven't found one with the same issue. Dani is on Ibr/Letr as I mentioned (tom BT's to ck the white count), but it's officially geared for Her2- , how important is that? Should I just ignore it. Onco is excited for the opportunity, I am worried she should not be wasting time with a protocol not even geared for her type.
Also reading about Immunotherapy, Onco wanted to do it, but I think his place is small so he has no access to it. It was so aggressive her bone mets, I have to be careful, she has lesions very close to the Dura in her skull, i am praying not to infiltrate her brain.
So sad tonight.
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lisajo, I know how discouraging it can be when you receive unexpected news like this, but please don't give up hope. This disease has ups and downs for most of us. Your oncologist and radiologist will come up with a plan for you. Hopefully, the treatment they decide upon with you and for you will kick those mets to the curb. Just because you have these mets in the bones, it does not mean that you will have it spread to your liver. Many people have bone-only mets for a very long time even after a period of progression. I have never had a PET scan, but I am sure someone else will offer you their wisdom about them soon.
(((Hugs)))
Lynne
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momall, as a mother myself, I truly feel for you. I can't imagine watching my own daughter go through this. I'm always thankful that it's me instead of her. MY mom was amazing, like you, and really stepped up and took care of me and helped my family. I can't help you with the Dx. I do hope you start a thread. The right people will find you there. As far as immunology, I don't think anyone really has access yet. When they do start recruiting, you'll probably hear about it here first.
Stefanie
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babs & lovesmaltese- I was also dx'd with bone mets on 10/1 (2010).
Oh, the irony, to get such news on the same morning the whole blasted world turns pink, right?
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While I have not been here for long, I am also saddened to hear of all of the recent losses of fellow BC fighters.
In regards to the pain question, as I've said previously, my initial dx of bc was 23 years prior to my stage iv dx. Over the 3 years prior to my stage iv dx I had several episodes of right upper quadrant abdominal pain which my PCP dx'd as inflamed fatty liver. Each episode lasted approx. 3 weeks then would disappear, until 2014. On July 21st, 2014 I started to experience that same pain, but also had pain in the right side of my thoracic spine. After 2 trips to the local E.R. and being poo pooed by the E.R. docs, because the radiologist missed the lesion on the CT they did, I suffered for a total of 6 weeks until I demanded that my PCP (who works at a different hospital) order a CT scan. That is when they found the lesion in my T11 and I had an MRI 4 days later. Two days after that, on a Monday morning, I was brushing my teeth and turned to grab the floss when my back popped and I couldn't straighten up. I called a friend to drive me to the E.R. 50 miles away because I didn't trust the local one. That is were the E.R. doc told me I had a tumor in my spine and had me transferred to another hospital to be seen by a neurosurgeon. The neuro. gave me steroids over 24 hours, did further MRI's and had me put into an orthosis (back brace), then I was transferred to a third hospital were my orthopedic oncologist is (he does my bone cancer follow-ups). After a biopsy, a bowel obstruction, and Ng tube insertion it was confirmed I had stage iv bc to T11. It turns out that the pain in my right side was not from a fatty liver, but the tumor pressing on the spinal nerve that innervates the liver area.
I had 5 days of radiation treatment in Sept. 2014, and was started on Arimidex which caused me significant joint and muscle pain. My first MO is a horrible person and I was fortunate to find the one I have now, who put me on the Faslodex, then added Ibrance when it became available. I continue to experience exacerbation of the fibromyalgia and joint pain on most days, but am fortunate to have the meds I need to control it mostly. Since early December I have developed pain across my ribs next to my thoracic spine and since nothing has shown up in a bone scan or CT, my MO suggested the pain could possibly be coming from the pressure of my upper spine pressing down on my thoracic spine. She has spoke of the possibility of Kyphoplasty. Although I've had 19 surgeries over 22 years and more surgery just scares me. Especially so near my spinal cord. My tumor was/is in the right pedicle of T11, not the vertebral body.
Had a 30 min. massage last week that helped for a short time. And after the conversations posted here by some in regards to CBD pills I am planning on pursuing that avenue as well.
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leah. Rest in peace. You will be missed b y many. Your inspiring, intellectual post were always one I read.
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leah. Rest in peace dear one. You will be missed by many. Your inspiring. Intellectual posts were always one I would not miss. No more pain.
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so very sad to see we lost Leah. Seems so many lately. Although we ave never met and will probably not meet many friends from bco, the pain of their loss is sincere. We become so much like family that I do celebrate the positives and grieve the negatives of this crappy disease on each of us. I've tried a week or so break before a couple times and can't say it helped me. I still thought of y'all. Sometimes I hesitate to post the negative stuff, like hospital visits , progression , pain etc. I don't want to discourage others members esp our new ones . But then I remember how It feels to know I am Not alone, others are going thru or have gone thru or will go thru what I am going thru.
I am def ready to see some more positive things happening for each of us.
My positive of the day is : I'll celebrate 2 1\2 years o from stage IV dx. My dss are 2 years older. I have had 2 more birthdays for each, 2 more Christmases, 2 more Thanksgiving. 2 more mothers day, 2 more summer vacations, 2 more anniversaries and literally hundreds of laughs, 100's of songs sung out loud together. 100's of morning snuggles on the couch etc. Today I am thankful for time with family and dear friends.
Hugs to all
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Patty that was a great post! I stayed away for a whole month because of fear. What I learned was that no one understands what we feel. So I agree, staying away didn't do much toake me feel better. On a positive note I feel great this morning. Hope everyone else is having a good day. Carol0
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Yes, great post, Patty! And I agree -- when I'm away or can't be on the computer or my phone quite so much, I really miss everyone and wonder how they're doing. So stepping away for more than a few days has never been the answer for me. And as far as posting when things are going well, sometimes I'm almost afraid to report that I'm not in much pain or feeling relatively normal because I feel like that's probably when the other shoe will drop. So I feel like I'm always walking that emotional and mental fine line between gratitude (good) and complacency (bad), between needing to take care of myself (good) and not wanting to focus too much on mbc (bad).
But I do have to share -- yesterday when my DH told me on the phone that I sounded like something was wrong, and I confided about Leah without going into detail, he said absolutely the right thing in the perfect tone of voice -- genuinely sorry and understanding -- which was a surprise (I had expected to be told to get off BCO) and very appreciated.
Labs & Faslodex shots tomorrow. Hopefully my first Xgeva shot too. Hoping if I get it in my tummy, which is kind of numb from my Diep surgery, it won't be too bad. Gotta get on the phone today and see if the specialty pharmacy I'm now getting Ibrance from this year (a change from 2015) has figured it out yet, especially since I could possibly need it as soon as tomorrow and I haven't heard a thing back from them.
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