Bone Mets Thread
Comments
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Hey Jennifer,
Yeah I could do with some of those book rrecommendations on books and what to say. The first time I had stage 3 he was only 1 so didn't notice anything much thankfully. Not too long ago he was asking lots of questions about various people dying which is a normal stage but maybe I feeling more sensitive now I'm dealing with mets!!! I'm doing hormones so we'll see how that goes. No one should notice any difference. I haven't told my parents or closest friends...that's another days work. Hoping I can tell them I'm stable in a couple of months. Your oncologist sounds really positive which is great. Lots of treatments we can exhaust to hopefully keep us all going strong
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I am due to start Zometa next week. Can anyone tell me what to expect as I am nervous about it?
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Welcome to all the newcomers. I am sorry for the reason that brings you here, but I am happy that you have found us. The people on this and other threads are very knowledgeable and supportive. We all know how scary this dx and disease can be. Once you have your treatment plan in place, you will find that things begin to settle a bit, and you can get on with life. I know that several of you have young children, and their future and well-being are right at the top of the list of your concerns. As you read through some of the postings on these discussion boards, you will find messages from other people who were diagnosed when their children were young. Some of those very women have been living with mets for so long that they are now mothers of high schoolers or beyond. In spite of the statistics that you have probably seen, there are people living with mets for long time.
Tedmom, Zometa can cause side effects such as aching or flu-like symptoms. The first treatment tends to be the one that is most likely to cause SEs. Subsequent treatments seem to be a bit better. That being said, there are several things you can do to help prevent or lessen the severity of SEs. I learned all these hints right here from my wonderful Bone Mets friends. 1. Make sure you are well-hydrated. Drink plenty of water the day before, the day of, and the day following your infusion. 2. Take ibuprofen or Tylenol the day of and day after treatment. If you start to feel achy or feverish, continue taking it for several days after the infusion. Some people also take Claritin. 3. Make sure that the infusion is set to take at least 30 minutes. Anything faster than that seems to increase the likelihood of SEs. I recently changed treatment centers. My old center automatically set the infusion for 45 minutes. Luckily, I asked before treatment at the new center, and I was told that the usually setting was 15 minutes. I asked for 40, and the nurse gladly accommodated my wishes. I still ask the question every time I go there. 15 minutes seems to be the standard in many places. Always ask. They are there to help you. 4. The only other thing I have to say is make sure all your dental work is up-to-date because Zometa can cause issues with your jaw. My dentist made sure my teeth and gums were as perfect as possible before I started Zometa treatment. I also have my teeth cleaning more frequently now because my dentist wants to be proactive (or get rich, not sure which. Lol). If you know you have issues that need to be taken care of, it is better to push off the first Zometa treatment until after the dental work is done. Good luck. Let us know how your first treatment goes. Edited to add: The Zometa infusion itself is pretty easy. I don't need a port, so I just have an IV every month. Quick and painless. The treatments will be less frequent as time goes on. There are blood tests that are routinely done before each infusion to make sure kidney function is normal, no biggie. Let us know if you have any questions
Lynne
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Great news, Jen! Love the "swing for the fences" analogy!!! I will pray that your upcoming PET supports this plan!
Welcome to the newbies! Robbin, I know it's difficult to believe, but once your treatment kicks in and you get any pain you might be having under control and start living long term with mbc, I think you will start to feel entirely more hopeful. It's a tough dx to wrap our heads around, but there are a couple of other threads here I would highly recommend to you. Here are some links:
https://community.breastcancer.org/forum/8/topics/...
https://community.breastcancer.org/forum/8/topics/...
I just noticed the latter one hasn't been active for a bit, so I'm going to bump it now, so that it also appears on the actives list.
zarovka, you had asked if you should get a second opinion. My strong belief is that NCI-designated cancer centers are the best places to treat mbc. If you are not already at one, you might at least get a second opinion at the one closest to you (I'll give you a link), if only for reassurance that you are getting care that's in line with the most advanced knowledge about mbc, and the most mbc-dedicated and experienced docs. Other than that, I think it's extremely important that we have oncs we trust and who make us feel strong and positive about our situations. If your onc makes you feel anything less -- or if you are always second-guessing their recommendations -- well that's when it's time to look for a new onc. http://www.cancer.gov/research/nci-role/cancer-cen...
LostBoyC, I'm glad Femara is working so well for your Mom! That's great news on her scans!
Amy, how're you doing? Any further "twinges" or hints of a kidney stone still lurking? Hope not!!!
Patty, you are always uppermost in my mind and heart! I hope things are looking up for you!
Big hugs to everyone else!
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Hi Everyone,
First off: My prayers go to all of you and your families.
The reason why I'm here is because my 54 year old mother went to get a nagging back pain checked out a couple weeks ago and the doctor found three lesions on the X-Ray: one in the spine and two in the pelvis. I am worried she may have bone mets from an undiagnosed BC.
The reason for my thinking comes from the fact that in 2012 she was called back for a follow-up mammogram (as far as I know they do this when theres an abnormality) but never went. In fact, she never went to a doctor anytime after that; even skipping her annual physicals. So until her last visit for the back pain, the last time she went to the doctor was FOUR years ago. I'm worried that the doctor who called her to follow-up found something that was ignored and it turned into something serious.
One thing working in her favor is that the doctor she most recently visited found no obvious lumps on her breasts, I know that BC doesn't always come with "the lump," but this is pretty much the only hope we have that she doesn't have a breast malignancy. I pray to god I'm over thinking, but it bone mets makes too much sense to me. She's going for another mammogram tomorrow and a bone scan next week. In the meantime, can anybody provide any input?
Phil
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Thanks so much to all of you. I am so grateful for advice anyway that can help. i am so sorry we have to go through this in our lives.
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Lynne, thanks so much for the tips. I am having a bit of trouble wrapping my head around the fact that my cancer has come back.in my bones. I foolishly thought that since I was almost to the magical "5 year mark", I was safe. Guess there is no more "safe"...lol. I have followed this thread for awhile and it has been so helpful for me. I've decided women have to be the strongest creatures on earth. Thanks to all of you for being there and caring. I'll let you know how my first infusion goes.
Vicki
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Vicki, I had trouble wrapping my arms around by diagnosis, too. I was originally mis-diagnosed with polymyalgia rheumatica based on the pain I experienced throughout my body. I was shocked when I was told that I really had breast cancer and was stage IV right out of the gate. Over the past 11 months, I have adjusted pretty well, and treatment has helped me live a normal fairly pain-free life. I still have a lot of living to do. There have been several bumps in the road during the past year, but I have learned that they are part of life. I appreciate the little things in life more now. It looks like you are taking Ibrance along with AIs. It's a good way to go.Many people are seeing very good results with that treatment.
Lynne
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Well ladies, I got a punch in the gut today. I finished rads on my proximal femur yesterday (Whoohoo!) and after a long discussion with my RO, decided to radiate the spots in my spine to see if it will stabilize the pain I've had in my right rib cage. After my first bone scan in March, the radiologist believed my osteoblastic lesion at T8 may be irritating a nerve. On that scan, a small area on T3 and L2 was also noted. I started Femara and Ibrance and added a monthly Xgeva shot. Mapping for my rads in mid-April found additional lesions on T5 and L3. Today I received the results from yesterday's mapping CT showed new lesions on T7, T9, and L1. I was heartbroken. I know I can't expect miracles, but was hoping my drug combo would work. I'm delaying rads to my spine to have another biopsy done. I'm meeting with my MO on Monday instead of 3 weeks from now.
The first biopsy showed my Her2 at ++, so it was sent out for additional FISH testing. The results were inconclusive because of the specimen degrading during the decalcification process. My original breast tumor was Her2 negative. I know some women had the ER/PR or Her2 statuses change with their mets. I'm also going to have my MO recheck my ovary function. Post-chemo, I was declared post menopausal, but Arimidex and Aromasin failed to stop my 100% ER and PR + cancer from returning. MO and surgeon are still dumbfounded that I have bone mets! Ugh, I just want to hear the word stable right now... So discouraged. AND my TM's went from 146 in March to 184 in April. For those who have been dealing with mets a while, does it sound like I'm doing the right thing? any advice is appreciated.
Deb
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Deb, if you just started on Femara+Ibrance+Xgeva in March, I'd say it's way too soon to tell if it's working. Noticeable results from Ibrance can take several months, during which time TMs often go up before they come down. Personally -- and I say this w/out knowing your pain level -- I would not be so quick to radiate everything until you give the meds more time to work. Just my take on your situation, but I am also very much in favor of second opinions whenever you're not totally comfortable with your onc's recommendations.
I'm also not comfortable with the dumbfounded description about your surgeon and MO. Anyone who deals with enough mbc knows it can be less than predictable, and even women whose original dx was DCIS or those who had a dx 20 years ago can end up with a metastatic recurrence. So I'm just a bit dumbfounded that they're dumbfounded. And if you are truly Her++ now, that needs to be ascertained so that you can get on the appropriate meds, such as Herceptin and/or Perjeta. Also -- not to worry you, but the trials for Ibrance were for Her2- bc. I believe the jury is still out on how much it will benefit Her2+ bc, but your Her2 status -- if it has changed -- is a really important factor. Is there a game plan for another biopsy to figure that out? Deanna
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Thanks Deanna. I truly trust my surgeon and MO, I just think since my original ER/PR + status was 100%, the meds should've worked. When I meet with him Monday, we will be scheduling a new biopsy to see if the Her2 status can be determined. They don't have tons of MBC patients at my cancer center, but both docs are current with meds/treatments for MBC. My cancer center is a satellite of the Univ of Pittsburgh Medical Center, Hillman Cancer Institute. We did the genetic testing, Oncotyping and found I'm BRCA negative, and showed a less than 5% chance of recurrence. I wasn't even at the 2 year post MX anniversary when I got my MBC diagnosis.
I guess I was looking for faster results with the medications, but also want to make sure if I need any additions like Herceptin, that we get it started too. Thanks for letting me know it can take a while before I can see some results.
As far as pain goes, I can tolerate the rib pain a while. I guess I'm just looking for the fastest route to slowing the progression. The rads for my spine can wait for now. I need answers to bigger problems! I need to remember this is hopefully more like a marathon than a sprint. I need to find the right shoes for run.
Thanks again Deanna. Your insight makes me feel better now. I'll see what the MO can add on Monday.
Have a wonderful weekend!
Deb
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Just got my TM's back -down again this month-Yes!!! CA15-3 went from 70 to 46 and CEA went from 18.1 to 12.7. We delayed my scans from the end of May to the end of June since my TMs are always very reliable.
Babs
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great news Babs
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Deb - I was originally diagnosed in 2009 as ER/PR + and HER2 negative. I had a lumpectomy and radiation to my left breast, and three years of tamox. Three and a half years later I was diagnosed Stage IV with mets to bones - all up and down my spine, pelvic region, ribs, etc... it was truly a miracle I was still walking ( I thought I had a sports injury and that that was what was causing the pain.... and did multiple X-rays which of course didnt' show the lesions, and finally an MRI that did) I also had two lesions in my liver. I had additional biopsies at that point, and at first they came back Her2 negative. My oncologist ( I switched after I was dignosed Stage IV) insisted that she thought I was Her2 positive.... she didnt' think there was any way the cancer would have come back so aggressively or so quickly. So, she kept testing - a few were inconslusive, and then finally got a Her2+ result, which qualified me for Herceptin/Perjeta. I have been on that for over 3 1/2 years (also had radiation to my spine every day for three weeks) and I have been NED for almost 3 years. My tumor markers have been in the NORMAL range since then. So I agree with Deanna....I'd really want another biopsy to find out for sure. It can make all the difference in the world. Also - I haven't been on any type of aromotese (sp?) inhibitors.... I am in chemo induced menopause so they stopped those... so it's truly the Herceptin/Perjeta that is working. (and monthly shots of Xgeva)
I know there are many routes and many experiences - but for whatever it's worth, that is mine. I am very grateful that my oncoligst tried so hard to prove that it really was Her2+....I am sort of wondering if I was misdiagnosed to begin with.
Hugs to everyone...XOXO
Andi
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Thanks Andi. When I see my MO on Monday, I'm going to ask for a new biopsy. I really think I'm Her2 positive now. It would explain so much. My surgeon had the histology department re-test my original tumor for possible Her2 status change too. Those came back negative, but I hope the next bone specimen can provide some answers.
Thanks again!
Deb
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Hi all!
Firstly, welcome to all the new names I see here, sorry you're here, but looks like you're getting some good advice.
Babs, fabulous news!!
Not much going on with me. Starting to get a bit of scanxiety for the bone scan on the 16th, hate the scanning & then the horrid waiting for the other shoe to drop. I'm spending lots of time in the garden & getting the carport painted. Just about done. Summer is here on the west coast. Even though I'm not religious, please for those of you who are, prayers for the folks of Alberta, specifically Fort McMurray, the 88,000 who had to be evacuated due to forest fires.
Hope everyone else is well & out enjoying the spring weather, because in perusing the thread, I see a lot of missing faces & trust they are doing more interesting things!
cheers, dee
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Deb, I read your post and I would like to encourage you to get a second opinion. I'm a perfect example of why you should do this. Like you, I am ILC, mets same area, and my original MO did not do lots of MBC but worked with Medical center to guide her. My ILC came back in bones after 18 years and bone biopsy said Er/pr neg. I have family close tonDana Farber and went for second opinion. It's the pathologist and the onco there that said Er/pr status to be negative was unlikely after reviewing my report. They also interrupted by scans much differently than what I had been told. I know it's hard to read these stories when you love and trust your MO but it's important to get a place like Dana Farber etc for a second opinion. Dana has so many trials going on. MO had a whole team of just MBC that they see only that. If I had stayed with my original MO I would have been triple neg treated. I have mets to thoratic spine and my ribs hurt as well but I actually had fractured to my ribs. I'm on cycle 7 and more scans at the end of month. Markers creep up but scans 2 months ago showed healing.
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Hello to all,
Welcome to the newcomers, sorry you have reason to be here but glad you found us. You will find and abundance of knowledge and support here.
Babs, doing a happy dance for you! That is an amazing drop in tm's! Please do something to celebrate.
Dee, hello and yes there have been alot of missing faces. I for one have just been wrapped up in Spring chores and enjoying the weather. My best friend came and laid landscape fabric and black mulch in my front gardens to make my life a little easier. She did an amazing job and now I won't have nearly as much weeding to do! Dee, my nurses daughter lost everything in that fire in Fort McMurray, her home, all of her personal belongings, the clinic she worked out of and all her equipment and diplomas. So sad, my heart goes out to them and many prayers for everyone affected, how scary!
Hugs to all, Annie
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Welcome newcomers Deb, Vicki and Robbin, and wow to so many ladies with young children! I am no longer in the minority, which is weird, frightening and comforting all at the same time. I am Cristina, I have 2 kiddos ages 4 and 8 and I am 39. I was diagnosed metastatic 1 year ago at 38 years old, and I was originally diagnosed at 35 years old when 35 weeks pregnant w my son. I went through the classic chemo, mastectomy, radiation all in 2012. Now I'm coping with the new diagnosis. I'm still shell shocked I think. I have scans next Tuesday (bone scan and CT scan).
Babs- great news!!
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Hello All,
I've just suffered through a week of hell and wish to provide some advice based on my experience. Turns out my diagnosis of Kidney stones was incorrect, even though all the symptoms pointed to it. No, instead it was severe constipation due to the narcotics I take. This was a complete surprise as i've managed the bowel/narcotics dance quite nicely for over three years, until now.
Looking back I can't say I had any warning but from now on I will document my daily constitutional so I don't forget. If I had been documenting all along, I would have noticed it had been over a week and close to ten days but I was busy and careless I guess. Anyway, double doses of Senna, Miralax and Milk of Magnesia got me moving again but I suffered 10 out of 10 pain for at least 24 hours and 7 out of 10 pain for a full week, until I finally got relief.
I also ended up in a vicious cycle, the more pain, the higher the dose of Oxy - the higher the dose of Oxy the more constipation.
Today I'm well enough to get about my usual day, but I've suffered all week and hope to never experience this again. Please please do take good care of your digestion, especially if you're on narcotics. This was worse than labor, where at the end of the day you've a prize waiting for you.
I hope you all are well and for those of you in the Northern Hemisphere, enjoying what looks to be an early summer - it's suppose to be 88 degrees here today. I'll take it.
Take Care,
Amy
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Hi all,
Welcome to all the newbies. Sorry you have to be here but you'll find so much knowledge and support here.
Deb, good luck with biopsy and hopefully this one will be conclusive.
Babs - YAY doing a happy dance with you.
Dee - We're just starting to see spring around here. Good luck with bone scan, will be thinking of you. It's just horrible what is going on in Alberta and unfortunately no rain in the forecast.
Annie - I'm in the process (which is kind of slow) of putting mulch on my perennial boarders. Pulling weeds in not my cup of tea.
Amy, OMG! I take narcotics on a regular basis plus breakthrough. It is a constant battle with constipation. Glad you're better today.
Saw my MO on Monday. She is sure the femur fracture is not an SE of Aredia/Xgeva. Another fracture was found in my pubic bone, I had a pathological fracture at dx, had healed slowly over 2 years and now broken again. Possible causes of those fractures may be a combination of too much walking (bought a treadmill this winter and kind of overdid it), a fall in the winter and rads may have been a contributing factor as well. Those 2 bones have large lytic mets and very fragile and any impact should be avoided. Ortho told me no restrictions after surgery (femur rod insertion) whereas MO always said go gentle and slow and with a cane. Should have listened to MO a bit more. Live and learn!
Good day and week-end to all!
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Hi everyone. Hope you all had a good week. I wanted to post an update about my brother. His PET scan report came back with "stable to better"! Great news since the last scan showed some progression. The 3 rounds Doxil worked for him with relatively few side effects. My guess is that his doctor will want to keep him on Doxil as long as she can. No reason to switch if it's keeping the cancer in check. I didn't see the full report, just the summary points, and it says things like "interval response" and "interval decrease", which I'm thinking means compared to the last scan. His follow up is on Monday so we will get more clarification then.
Wishing you all a great weekend!
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'morning all!
Loving, fabulous news about your brother, sounds like you will indeed have a great weekend!
Annie, so sad about your RN's daughter, I feel so bad for everyone affected by the fires in Alberta & BC. We worry constantly about fire here, we're on a small island with no real means of evacuation if something like this happened here. We have a plan in place with our neighbours which gives me some assurance.
Amy, horrible to be in such excruiating pain like that. I hope you are getting some relief now.
Linda, that's ironic isn't it? We're told to get regular exercise & then you end up with these painful fractures. I can't believe I'm going to say this, but happy that they are "only" fractures and not new mets!
Hello to everyone else on this thread! Have a lovely spring weekend. cheers, dee
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Mary, I have been thinking about you since Mothers' Day is approaching. I remember how difficult it was for me the year my Mom passed. I still miss celebrating the day with her. My heart and thoughts are with you. Remember all the good times you shared with your Mom. Her spirit will always be with you.
Dee, I have been praying for relief, safety, and comfort for the victims of the terrible fires I have read about in Canada. I can only imagine how devasting it must be for them. I hope your bone scan goes well. I have a urology CT scan on Wednesday. I don't expect bad news from it, but I am still a bit nervous.
Amy, I am glad that you find out the source of all that pain and that you have gotten some relief. Medications can work wonders, but they can also do terrible things to us at the same time.
Linda, What can I say? I am sorry you have suffered fractures. I guess we should focus on the good news that it is not progression, but geez, you need a break ( no pun intended, honest). Btw, Dee loves pulling weeds. I think she should make the rounds and pull weeds in all our gardens.
Loving, I am happy to hear the news about your brother. It sounds like continuing that treatment is the right way to go.
Babs, Woohoo for those TMs! Celebration time.
Cristina, Good luck with your scans on Tuesday. I hope you don't have to wait too long for results.
Deb, Good luck with the biopsy.
The sun finally came out today, and I played in the garden this morning.
Hi to everyone else. Good luck for everyone with scans and treatments this week.
Lynne
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Lynne - I agree, Dee should make the rounds LOL!
Despite those fractures, I'm very happy with my results. Way better than progression.
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Has anyone tried Relistor or Movantik for opioid constipation? I may ask MO about it. Amy, so miserable for you and so glad you didn't end up with an intestinal blockage. Hope you keep 'moving' and don't experience that again.
Linda, who but us would think a pubic bone fracture is a good thing! Hope your pain gets better.
Loving and Babs, great news.
Lynne, how is your dh? Still eating well?
Good Weekend to all.....my crab apple burst open today. thought I'd share.
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Hello bone mets sisters, I am new on this thread, thanks to the PET scan I had yesterday. My story: diagnosed with IBC in June 2015, chemo, more chemo, immunotherapy, now about to start chemo again, no break at all. I just had a CT scan that didn't pick up on any of the bone stuff so it must be pretty small. Spine, pelvis, femurs and scapula. I have a couple of crowns (dental) I want to get before I start xgeva so I am going to schedule those for a couple of weeks from now (with my team's blessing, they said absolutely yes). I haven't done a lot of reading here but I will, I am sure there is loads of good info. So far no pain other than a weird twinge at the SI joint that may simply be my sacroilliitis acting up (but it reminds me of what neulasta feels like so I am guessing that is the spine or pelvis met talking). I am sorry I have to join you but glad you are here, thanks in advance.
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Welcome PurpleMinion I love your bco name. I think you will find this is a very nice thread filled with support and knowledge. You might want to finish filling out your profile as that will help us give you more detailed info coming from those who share your path. Feel free to ask any questions.
Aur
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Linda, I'm going to look up Relistor or Movantik - I'd welcome a one-stop-shop to fixing and keeping me regular - my ritual right now consists of so many meds, I feel I'm going to gag -
Thank you all for the kind words and well wishes. You all are the best -
Welcome to our new members -
Amy
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Welcome to all our new members-sorry you find yourself here but you will find everyone here such a great help both for information and support!
Thank you all for the good wishes and support!!!!!
Dee--I am spending less time on the boards lately- life is keeping me busy! But I do look in-just hardly write since this thread moves so quickly
Deb-As Carol & Deanna advised I would go for a second opinion. When I was first dx with progression I was given very few options for txtmt but when I went to MSKCC I had many more options open to me. And currently Xeloda is working for me!
Annie- I do intend to celebrate. We all need to celebrate any & all victories!!! Last night we celebrated with cousins, tonight with other cousins, Mother's Day with other cousins, Monday with my DD when she comes home from vacation and Tuesday night my DD's friends are taking me out. I am blessed to have such wonderful support.
Cristina- good luck with your scans
Amy-why don't you try smooth move tea a few times daily. I'm sorry you're dealing with constipation issues Even on X i have that issue too-not fun!
Linda- sorry about your fractures
Loving- great news about your brother!!! Happy dance time!!!!!!
Lynn-have fun in your garden-I miss mine
Lindalou-I love the apple tree picture-thanks for sharing!
Wishing all a very Happy and easy Mother's Day!!!!!
Babs
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