Bone Mets Thread
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Hi All,
My wife was diagnosed with LM in spine area with the following report as part of her MRI : "Enhancement of the cauda equina nerve roots at the level of L5 and S1, suspicious for leptomeningeal disease". Can someone comment what sort of prognosis she should be looking for ?
Thanks.
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I want to go back and read this whole thread later but it's too overwhelming right now. Can I ask a couple questions here?
Bone met in rib (appears to be the only met) ER+
1 - Oophorectomy or ovarian suppression, which is better? I'm leaning toward the surgery, one less thing to think about and seems more "surefire" than injections. I'm only 33 though so not sure if the side effects would be particularly severe?
2 - Local control, what's been your experience? Is it worth having the met surgically removed or radiated? This hasn't been presented as an option but is something I'm really wondering about.
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indenial,
I can't offer any thoughts on your first question other than I am 42 and my onc doesn't want to do the Ooporectomy yet - just the Tamoxifan at this point for me. On your second question, if the met on your rib is the only one, I would encourage you to talk to your team about doing something about it whether it's rads or surgery. Take a look at this MD Anderson piece where they are having strong success with oligometastatic patients (https://www.mdanderson.org/publications/oncolog/august-2014/clinical-study-offers-definitive-local-treatment-of-bone-metasta.html). My team is basically taking this approach with me so far. I might be able to connect you to a friend here who was diagnosed around your age with a single met to a rib which she had removed surgically (if I'm remembering right) 14 years ago. PM me your information is you'd like me to make a connection.
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Indenial,
I think I mentioned this on your other thread, but I had one symptom free bone met. My primary and second opinion mo's agreed that rads x15 followed by an AI and two years of Aredia. The rads were done with intent to kill the little bugger, and it did the job very well. As for surgically removing a bone met, I haven't heard of doing that, but that doesn't mean it isn't done somewhere. Take care
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As always I am trying to keep up with this thread. I've been reading all of your responses to Divine, and several of you have mentioned that your oncologist would only treat with Xgeva for two years. I have been getting monthly Xgeva shots for three years.... can someone comment on this? If you get them for only two years are they more frequent? I have an appointment next week and plan to ask, but I have found that the experts on BCO are usually great source of information.
XO
Andi
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I finally went through 7 pages. I really wanted to first see what everyone was up to, and by doing that I kept getting behind in the posts. It has been time consuming checking out the new tx that Dani is on, getting acquainted with it and trying to stay a step ahead. I was also looking into the threads that are specific to her txs, and then we are sent links, you know how it goes, it's me and the computer. I am kinda of burned out. My memory is very foggy. Not a good thing. I know, I know i have to take care of myself, but real life happens in between. Sleep is the biggest problem, so I am working on that too. Dani started a new tx, her TM's are not great, but we are patiently waiting for the next scans, which will be about 6 wks after she starts, in a way we would like it so close, but I am starting to think after perusing a lot of posts here, maybe it's better to wait a bit more.
As i was reading everyone's comments, I tried writing down my thoughts. So here it goes.
Linda so happy you are coming along yeah for the wonderful news on your scans. It's really weird, in a dif thread some ladies were saying how they started being more active, my daughter started wanting to do more, she started Yoga, and got on the treadmill(believe me not for weight purposes she's a peepsqueak ) but for exercise. She just started having fun with the little ones, she wants to go hiking(nothing crazy), she would like to go horseback riding, but is always afraid
Dee so sorry you are having this difficult time. Certainly the not knowing make things so much worse. I just had this run around with Dani's Onco's office, had to get approval for new drug, and I realized that wed afternoon they were already preparing for the weekend (in their mind, of course), Friday is an off day for them, just the secretarial and infusion are in, but not the person that takes care of Ins etc.., so there was a very very anxious 2 wks trying to talk to them, it got so bad that we made an appointment and went to talk with the director of the center and the Onco. Yep, they were horrified, it did not make us feel much better, but we did get the direct number of the office manager, and we are to spk with her directly.
Kathryn could I ask you how do you know Xgeva "has been working well", I am curious bcs doc wanted at first only every 3mos for Dani, but I insisted in monthly, that is what she used to get at a diff Onc, so we settled for every 6wks now. But how would we know it's safe to lower it? Also, Dani wanted a massage so badly for her back sores, but Onco does not recommend it.
Jensgothis so glad that you are holding in this stage with the zapping. Yes, I would like to hear how to convey to kids. Would you like it In private? My daughter's little girls are 7 and 9, and they still don't know, even thou it's been years, but we work very hard they should not know yet, my daughter is very apprehensive that it will affect their lives, they are very close with their Mommy, I cannot imagine.
Newslady oh I think for sure you should have a biopsy. I am very upset actually, when Dani was first dx with METS Onco and surgeon said biopsy is not necessary bcs they were sure it was still BC, but I did not understand at the time that there are many different type of BCs, and when she finally had a biopsy yrs later after much progression, THEN they saw that the type – the status changed. When a status change there usually is a treatment change. It's not the answer to everything, but it could be helpful.So sorry you went through such a misery with the rads, my daughter is taking a new drug and it could cause quite severe diarrhea so doctor prescribed LOMOTIL, it's supposed to be pretty good, I am sorry I was not able to help you as soon as you needed it, I am just reading all the back posts now. http://www.webmd.com/drugs/2/drug-6876/lomotil-oral/details
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Lindalou that's what I am talking about. You know, I am just scared of the day that I will stop going to the funny jokes, or funny emails. I barely watch TVthese days, (I used to love it), but I take one of these medical books to bed and I try to fall asleep after taking all my sleepg arsenal, and I used to love music, no patience for that these days. I am glad I loved your picture. It means a lot. Thx.
PurpleMin sorry about the recurrence. Onco just asked my daughter to apply for Immunotherapy, could you let us know a bit about it. They said it could take weeks, but they wanted to start the process in case the tx she is on will not be satisfactory. (she has been on almost everything already). Why would say it had not worked for you, it's supposed to be so potent.
Mary argh first mother's day w/t MOM, tough. But you have all those good memories.
Andi it's very confusing. Your story with the status is so true. My daughter was doing all right for close to 2 yrs, (but I am not so sure either, bcs at that time I was not so involved with the details, so I am not sure of all BT, (I would have asked them to be done more often, for her to be seen more often and for more scans to be done). So even when it clearly showed a change fo HER2 status from neg to pos, (after many pleas biopsy should be done), and everyone was excited for the new txs, she had a terrible yr and half of aggressive progression, HOW could that be explained!! Mets to all bones and skull. Rad always says too many to count. She is now in a mixture tx for Her2+ and Her2- , let's see what the next scan in June will show.
Andi, about XGEVA I am always trying to understand it also. As I said b4, Onco wanted 3 mos, we wanted monthly, we all settled for 6wks. I am not so sure what he is scared of, she went to the dentist, has it all squared away, just different views. But I will be watching what everyone answers you.
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Babs so happy for you. These are gr8 numbers.
Lynne you went through so much, you deserve a little "good time". Glad to see you regrouping. Was a sad day when Dani told me her hair started turning gray at just close to 30, not from hair coming back from chemo, that was much earlier, but after forced menopause. To think that she would be dyeing her hair….That's just cruel.
DebK I think it's the best thing to do, these biopsies I hear could be so innacurate. And the HER2 status could really throw you for a loop, there are words as equivocal etc…, and the studies on Her2 has become so sophisticated, they did find that there are many pathways not just one type of Her2. I learned this info, in BCO in different threads, and just had it proven by Onco due to constant progression of my daughter's lesions. The truth is that is much that still need to be learned.
Whitney through questions this is how we learn, Dani found it first through an xray for the shoulder that was bothering her, that docs completely ignored bcs THEY could not and would not believe that she had METS, after Xray done at an orthopedist that is not an oncologist, he freaked out, and send her immediately for a bone scan then she went for a PET/CT and so it continued the saga. WHY Oncologists and surgeons that see this everyday and have years of experience would be so blind?? So ignorant to the needs of people dx with cancer, if someone with this C thingy, complains of pains, their antenna should go up immediately.
Lillymillie I just found our rereading my daughters' Dani's path that she isnow considered PR-(1% weak), what does that mean in terms of tx recommendations. She was ER+PR+ HER2- then in biopsy after much progression, status changed to ER+ PR- HER2+ Can anyone elaborate? Does it change anything, if I understood Onco correctly he said no. They treat it as Hormone positive and Her2+ at this point.
Cita Onco is very interested in this. He's def gonna keep it in the arsenal when needed.
Indenial – my daughter was in her 20s when she had an oophorectomy, she had ovarian suppression before METS, but we were always anxious bcs there is a thought out there about cervical cancer being higher in these cases with Tamoxifen and all, anyway after she was dx w METS all docs involved thought is best she has the surgery. It was not very dramatic in the physical sense, she had it done laparoscopic and stayed overnight and then took it easy for a few days, but resumed life pretty fast. Of course, she has to deal of all the Menopausal issues.
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Sarah what scans did you do? Dani's TM's are slowly creeping up, but I think I read that sometimes when there is healing it many creep up also, they were never too high, but…I just looked back at last year's TM's when there was constant progression, but the TM's did not tell the story. It disheartens me, bcs only the 3 mos scan now, could show us a/t. Onco includes constant BT's due to drugs she is taking now that lowers the WBC, so TM's are taken often, but I kinda of ignore them.
Rachel1 so sorry for this news. What's the plan? Did you have an MRI of the Brain? My daughter has multiple lesions in the skull so when she just had partial numbing of face she also had an MRI of the soft tissues of face and neck and cervical spine, , (it did not show a/t, they think it's a SE of Ibrance (for her)).
Letmywife, this is typical for my daughter. She actually does not even stop. Just recheck the wk later, can't tell you not to worry, we do anyway, but just so you know, it does happen.
Chelle wow, how nice that so many are in love with your house. Where are you holding now?
https://community.breastcancer.org/forum/8/topics/789492?page=440#LovesM Thanks so much for all your help and support.
Amy what a wonderful time in your life, enjoy every minute.
Robin Vicky Tedmom insane that you guys at such a young age should have to be here. My daughter is a drop younger, also with 2 little girls, so we will share a lot.
Rachel thx for the heads up with Xgeva, 6 wks is what we settled for. Onco wanted 3 mos, we wanted monthly. You are a good auntie. What a beautiful picture.
Cristina good luck on the scans, and the picture of your little one is just precious!
Amy waving to you, proud MAMA.
Bosco how are you?
Patty HELLO!! LOVE your attitude.
DEANNA - THE ONE that makes sure we are always doing the right thing, Hat off to you. Cna't wait to hear what your sister is gonna share with us.
I said today I will try to catch up on everyeone's lives BUT I am sure, i jumped someone, forgive me.
I WILL try to check in tomorrow. Everyone have a gr8 night.
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Good morning all,
Mommal - so happy to have an update on Dani. Keeping fingers and toes crossed! I would go gently at first with exercising. I had not realized how fragile those bones of mine were. I'm impressed with your posts - how do you find the time to summarize and think of everyone?! You are quite a lady.
Andi - At first MO said Aredia for at least 2 years. When I asked if tx could be stopped or further apart she said absolutely no. After 2 years I was switched to Xgeva monthly. I know one of the reasons they want to continue is because I tend to have high calcium levels in blood and all those bone strengtheners lower calcium levels. Even at my last 2 May appt, I brought it up again and she wants to continue indefinitely especially with my new fractures. I think it may be based on the individual's condition, progression, number of mets, healing?
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Another question, do I need a PET scan? It seems everyone has them except me! I've had bone scans, chest CT, x-rays, and have abdominal/pelvic CT soon but no one has ever mentioned PET???
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Hi Friends,
New to this, and will probably just lurk for a while, but wanted to let you know that I'm here. Just got my confirmation of bone mets to pelvis on Wednesday. First Zometa infusion will be on Monday. Already on Femara with Lupron injections. Trying to live normally and plan for my 7-year-old's birthday party tomorrow.
-Shari
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Shari, I also have a 7 year old and am newly diagnosed with mets. Just wanted to send some hugs and love your way, message me if you want to chat!
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Indenial, I was dx with a bone met in my rib in the fall of 2012. We debated surgery or radiation for awhile. The surgery scared me because they would remove the rib and were not sure of the pain I might experience after. I went for a second opinion at Johns Hopkins to help me make a decision. I decided on steriotactic radiation and that was very effective.
I have PET scans every 6months and I am starting my fourth year of being NED. I have a Zometa infusion every 3months and take tamoxifen daily.
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that gives me so much hope!
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hi ladies, hard to keep up with the thread but reading all the updates.
Momallthetime- my onc said it was slightly more beneficial now I was pr+ for hormones. Mind you when I was er+ pr- originally my surgeon said the pr didn't make much of a difference. Treatments will depend on the er and her status.
Shari and indenial. I'm newly diagnosed too. Have a 5 year old. Mets to pelvis, femur and a small spot have shown on spine and sternum during the 2 months between getting original scan, waiting on bone biopsy etc. I suppose during that time I wasn't on treatment. Very overwhelming at beginning but trying to trust in treatment plan and take in all the positive stories.
Ive had two weeks of rads to pelvis and femur already so a little disappointed to find a couple more spots. Am on arimidex a couple of weeks, got xgeva shots and zoledex last week. I don't feel any different. Where are my hot flushes and night sweats??? I wish I felt something so I'd now it was shutting down my ER making machine!! It's only been a week but when should it happen and what will I feel. Getting scanned in 2 months just before I'm supposed to be going on holiday. He said any more progression and he's doing chemo...gulp! I hear it takes 10 to 14 weeks for the Ai to work so I'm not sure what he's expecting and if chemo is a certainty! Maybe he feels its not as slow moving...I have ductal bc. Anyone had similar experience. Other than the cancer I feel great with no pain and full of energy!
Teacher911 that is great your treatment worked so well. Congrats on ned!
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Lillymillie, I had the WORST hot flashes on tamoxifen (sometimes 20 an hour!) and yet my cancer progressed. So I wouldn't assume presence/absence of hot flashes is an indicator that it's working or not. So sorry you are going through this with a young child as well! This is awful for all of us but especially heartbreaking to know we might not be here to raise and protect our children when they need us most!
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Divine, It took ages to be dx. Main symptom was severe and increasing pain for over a year. I went to three different doctors, numerous physios and an acupuncturist. Everyone was able to feel and move the tumor on my spine. The pain became so bad that painkillers didn't touch it. I couldn't sit, walk or do anything without pain. The final doc I went to said she had exactly the same prob - a compressed disc and knew how to treat me. On my request she referred me for an MRI of my spine. I also asked her to refer me to Breastccheck as I thought I saw a puckering around my nipple. She assured me that I was worrying unnecessarily as I had a mammogram every two years and nothing ever showed up, but referred me for peace of mind. I was dx straight out the gates. Admitted instantly to the hospital as an emergency, not even allowed to go home for my overnight things. Scans showed mets everywhere - in skull, cervical, thoracic and lumber spine, ribs, hip, pelvis, etc. Bone biopsy was taken when a rod was inserted into my humerus as humerus was eroded. I have several compression fractures in my spine and subsequently fractured my ribs, pelvis and nose! I think I have lesions in my lower legs, ankles, wrists and fingers as they ache but they don't scan those areas. Anyway sorry for the lengthty entry but I still feel so mad that it took so long to be dx. Whether it would make any difference in the long run - who knows, but still I wonder. Also I was so ignorant myself about this disease, I never knew that there were different stages, that it metastasized into other areas of the body. How are you doing these days? Hope all is ok. x
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Lynne- met with my MO on Wednesday and then had Zometa. The scan results were not at all what I had hoped for. There was mild improvement in some of the areas but now there are more places. And there is a tumor on my spine that need to be radiated. Just felt like a kick in the gut. After the radiation treatment MO wants me to go on Xeloda. I guess if that doesn't work it will be IV chemo. Was just a mess that evening. And I did all the things to lessen the SE's of Zometa but still had chills and fatigue. Better today but still tired. I guess I need to find out what I have to look forward to from Xeloda.
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Andi67 My oncologist said that he would not give xgeva more than 2 years because he said new studies show taking it longer than two years gives you a very high chance (to risky in his opinion) of developing Osteonecrosis.
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hi Dixie Bell,
Just found out today that I am bone Mets stage IV. So far only one lesion found. Doing a pet scan next week to see if organs are involved. We have exactly the same cancer ILC ER + PR + her2 -
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Ginabean:
I had one mets in lower spine L4-5 and did radiation, it shrunk to 2cm and then I did some alternative stuff and was NED for 2 years. Not it ha progressed to the t spins (all of them). Debating on new treatment. Will probably go to MD Anderson for second opinion.
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Dixiebell and my question is how long does Osteonocrosis take to happen? Do they have a study that puts the number at 2 yrs? I am always debating if they are guessing or have significant data. For Heart Health many guidelines they had 30 yrs ago, all of a sudden it's not quite so. Eggs, some meat, some milk all is not as bad as they made it out to be. Now what? I would love to have a NORM so we could all follow.
Aoibbeann WOW WOW, so many people here have similar stories. Incredible. It's half bad if it would be a PCP missing a sign, but Oncologists when they see someone with constant pain, seriously? The same happened b4 my daughter was dx with METS, persistent pain and Onco and Surgeon (that she was going for follow up check ups) totally missed it, again, I told her to go to a Ortho, he did an Xray, totally freaked out (he did not know she had been diagnosed with BC) bone scan and then straight to PET/CT
She had just had a baby, at 3mos check up she showed GYNO a nice size olive thingy in her breast, in her mid 20's, doc said ""She was too young to have something serious" and refused to give her prescr. for MAMO, too dangerous, yep, we paid out of pocket for MAMOGRAM and after this test and that test, within days she had a Lumpectomy etc....and so it goes over and over. I wonder how that man could sleep at night?
Lilliemi sorry to say but Dani also had much hot flashes, and she still was dx w Mets. So... don't worry it will come
Linda - always! Thx.
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momallthetime...I do CAT and Bone Scans. CAT scan showed clear organs, Bone Scan showed stable, but my CEA was 17 and 15.3 was 484 I think. So now I am on Faslodex. But I have been in contact with the Hallwang Clinic in Germany, and am going there in August. The medical director called me and is getting my tumour analysed for targetted treatment. Does any know of good or bad reports of Hallwan
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Hi ladies,
Scan results not good. I have numerous liver mets the largest being 3.5 cm and one of the 5 nodes in my lungs went from 7 to 9 mm. Plus my T7 vertebrae shows progression and other spine and pelvic lesions stable. Though there was never any mention of pelvic lesions in any previous scan. Onc wants me to start chemo ASAP but I want a liver biopsy so that will come first hopefully next week. Am I still on this board or do I switch to another board for liver mets people. I'm completely overwhelmed.
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oh Cjanet, that is all a bit overwhelming. Please don't panic. I hope you will stay here with us and also visit with the liver mets people but don't leave! Hoping you will get a treatment plan in place that kicks these mets to the curb and get back to just living as soon as possible. Hang in there
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Aw Cristina - I'm so shocked and sorry to read your post. You are a wise lady to ask for a liver biopsy. Of course you stay on this board, we want to support you and we are all rooting for good results with your next tx. That said, I often lurk on the liver mets thread where some gals are doing very well. You'll probably find a lot of info there. I hope you have nice plans for the week-end to keep your mind busy, easier said than done. Keeping you in my thoughts and prayers and sending you BIG hugs.
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Cristina- I'm so sorry about your liver mets. I'm on both the liver and bone met threads-as are many others. When I was first dx with liver mets I was so scared. But there are many who've had liver mets for years-don't get discouraged. What txtment are you going on? I'm on Xeloda which is working for me. I hope your MO finds the txtment that will knock the s - - t out of this damned cancer! You can PM me if you want.
Babs
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Vicki,
I am sorry that your scan results were not as good as you had hoped for. I can imagine how upsetting it was to get the news. Do they think the newly discovered mets are really new or just not detected previously? Was it a different type of scan they show on now? There are many people on this thread including me, who have been diagnosed with bone mets throughout our bodies. Mine are in both ribs, both humerus, both femurs, both tibias, several vertabrae, sternum. I am telling you my mets so you do not lose hope. There are still treatments available for you.
There is a Xeloda thread. Have you seen it? I think many people have had success with that treatment. They can tell you about side effects and how to handle them if you have them.
I hope that you are recovering from the Zometa SEs and that future treatments are better. If someone has SEs, the first treatment is usually the worst.
Do you know when you will begin radiation on your spine? I have no experience with that treatment, but there are others here you can answer questions for you and give you advice. They can tell you what to expect for SEs and recovery times. It is an effective treatment.
I know this is the hardest thing you have ever experienced. It is difficult to comprehend what is happening because things move so quickly at first. Remember that you are not alone. Lean on your loved ones and those of us here. We truly understand what you are going through.
(((Hugs)))
Lynne
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Cristina, I am sorry about the mets to your liver. Let us know when you will have the biopsy. I want to add my voice to the others - we definitely want you to stay on this thread. You still have bone mets, after all, and you are an important member of our family. I also lurk on the liver mets thread from time to time, and many people are doing very well.
Indenial, I have not had a PET scan. Many here have not had them. It sounds like you have had sufficient scans to get a clear picture to determine the extent of your mets
Shari and Ginabean, Welcome to the Bone Mets Thread. I am sorry that you have reason to be here. As you have probably already noticed, there are many helpful, caring, supportive people here. Let us know how we can help.
MomATT, it is good to hear from you. I am impressed by your posts. I don't know how you managed to address so many people on this thread.
It seems as if we have had an unusually large number of new people join us lately. Maybe it is just my imagination. I wish that the researchers would find a cure so these discussion boards would become obsolete. I hate cancer!
You are allin my heart and prayers.
Lynne
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