Bone Mets Thread
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AU - oh it must have been so scary!! I really hope they did a better job in closing the stitch now, and look at this way, glad it did not happen at home! Oh, just a funny thing, my hubby had bypass many yrs ago, i was takg care of him at home and i was changing the bandage on the leg, one of the places they took an artery from, anyway, hmm it was woozg u know that color...i then said "move over" and I shoved him in so fast, i was fainting
! oh we laugh so much whenever we tell this story. Feel good.Deanna so good to know that ud still stay on it. So sorry for your lack of sleep, it's not fair. I just got a name - And gr8 advice for Cristina.
Dee such warm words, a lover of flowers, you have to be a certain type. Lynne, so touching your kind words. Hope to hear good news with DH!!
LindaE - so special your concern, and thx for the warm welcome in this magical club.
Cristina - hey sweetie, Dani has so much fight in her, she is gonna go for it, she just told me tonight she does not care if tx is aggressive, she needs to do it for the sake of the little ones. And CJ - marriage is constant work, if s/o tells you different in my opinion they are lying. We are constantly adjusting, and trying to fit 2 pieces of different puzzles. You should try to make urself happy first, laugh at what you like, cry when you need, and as long as he is not violent or abusive, just being a jerk, maybe you could laugh. Or write it down in a journal, then you could let go of that particular ire and maybe things will look different. I hope he realizes soon what a fool he is making of himself.
I spoke to Onco and RO, they actually both and the PA thought that I should just tell her its not as good as we hoped for. She got the message. She was upset that it did not even recede. I told her slowly during the day, i told her docs did not have clear comparison with last scans which is true, they are working on it, so numbers are not exact, and then I told SiL also separate, he is very sad, but he will be strong for her. We try to support him, i bought him a card about life and to show that we are with him, he knows.
Monday she will be continuing w chemo, it's many of the known chemos, but w higher dosages. He told me he was scared to give her very strong dosage, but he will. She wants to. TM's next wk, now the platelets are low, ast/alt elevated, and so it goes...
Kjones how sweet of you to jump in. thank you.
Annie, thanks as always for your prayers, Lindalou such warm words.
Mary you know what you say always about daughters, it's been hell. I do try to take care of myself, sleep is a big problem, I believe I gained 3lbs from lack of sleep, for real, nothg changed in my "lack of exercise", or meals, the only difference is I am sleepg just a few hrs at nt, it's not enough for me. But we move around the civilians (;)) as if we are normal
Lynnwood Rachel thx so much.
I know for sure i left a dear friend out, sorry - gn
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Auroaya, I meant to send you my speedy recovery wish! Sorry for the setback. Hopefully everything is OK and tomorrow would be a very good day for you!
Momal, you are such a strong mother! It is very good to have plans in place already. It is also very good to have a strong willed onc as the captain against the waves. Dani has been so brave! Wish her victory in this battle!
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Saucy, where do you live? I believe they do integrative treatment in Rochester, New York, but I can't swear to that. I also know a great naturopath in Southern Ontario who works to support what the MDs are doing, or counteract negative effects of treatment.
My doctors here refused to do tumour markers, because they said they weren't accurate. It would have been nice to see something, though. My monthly blood work is always great. Alkaline phosphotase at 56, all liver function is good, etc. etc. But I don't know if they were ever off...you know? Have my levels improved or are they just not indicative of what's happening in my body. They don't tell me much, when they do it is often different from one doctor to the next, and some just don't understand why I need to know. And why do they only scan from shoulder to pelvis? I don't even know exactly what mets I have...at first it was three in the bone, one spot in the liver that they thought was benign, and one spot near the lung that they thought was a node. Since then others have told me it was two spots in the liver and one has shrunk, that the node was actually pleural effusion (but I doubt that)...I need an oncologist who has the time to actually talk to me and show me my scans. Most of the time my appointments are taken by an intern or a different oncologist and they just read my file while I'm in the room. I had a CT scan on September 15, and the only reason I know the results is because I called my Xgeva nurse and she was nice enough to tell me over the phone.
Cristina: As for husbands...mine is my best friend, he loves me madly and we get along great. There are times when I wish he was a bit stronger and protective...unfortunately, not! Some men just have more little boy in them than others. Perhaps they are subconsciously attracted to strong women, or perhaps we even bring that out in them. However, when we need someone to chase away the monsters under the bed, or feed us chicken soup, they can't rise to the task. I'm just glad that my husband is keeping it together during all this so I don't need to care for him! The final tally, though, shows I'm definitely better off with him in my life.
Money is a bad reason to stay married to someone, and maybe a bad reason to break up, although I can understand the frustration. It's more about the fact that he doesn't seem to want to put himself out, right? So here are the questions I would ask myself: If he's earning that little and coming home with big credit card bills, are you sure you wouldn't be better off financially alone? If you were independently wealthy, would you still want to live with your husband?
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Good morning all,
Saucy/Karen - a warm welcome to you but sorry for the reasons that bring you here. I was dx'd stage 4 right from the start. Pain was the indicator and multiple bone mets were found along with axillary lymph node. I have been on hormone blockers since and doing well. I went for a second opinion and it confirmed that the initial tx was the right one. Congrats on getting a second opinion and wishing you the very best with whatever tx you have. Keep us updated.
Aurora - Sorry about the bleeding. I hope all is sorted out now and you can begin tx.
Rachel - sending you lots of love and hugs. Sadness is part of this journey. Also sending you a virtual bundle of joy and smiles.
Mommal - you and Dani rock! Always in my thoughts and prayers.
Milandra - hmm doesn't sound as if communication is at its best. I find that the only way I can get answers, is to keep copies of all my reports. I read them with a fine tooth comb. My Onc knows I review everything - knowing that she is much more willing to share with me. I always see the same Onc, although she is leaving on mat leave in Dec (again, 2nd baby). During here first mat leave I saw only one and it will be same again. Sometimes though, I wish I had another pair of eyes but I would rather work with the same one. Is that possible for you? Anyway, rambling on here but I wish you the best.
Gotta to run to prep scan for rads.
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Karen,
Sorry for your recurrence. 8 years on your treatments is a good thing. Hormonals are not working anymore for me as well. I had TAC originally and now back on low dose taxol weekly. I acquired liver mets & a brain met after 6 years with bone mets only. There are still lots of treatments out there.
Hope you do well on treatment.
Terri
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So I have a general question...what do bone mets feel like? Is it a sharp pain or a dull pain or numbness? My oncologist asks every time I see her if I have pain. I feel a certain stiffness in my shoulders but that could be from the gym or from coughing from a bad cold. Supposedly I have a met on my C2 so is that what I'm feeling. It's not pain more like stiffness. I hate worrying...
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Wendy,
I would venture to guess that pain feels different for each of us. Factors like location, size of met etc., probably play a big role in pain. Some have no pain, some have debilitating pain and everything in between. Not a definitive answer, but probably true.
Caryn
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Wendy
I have asked that question so many times.I have finally started to let go and know that Caryn is right. My MO is most worried about pain at rest or at night. But my most active met in my rib rarely hurts at night and most. often bugs me with activity. So the best I can do is know my body and let my treatment team know of changes and work at not. being totally preoccupied about it.Dbl has a rule to wait for pain to last 2to 3 weeks. I dont think I have made it thay far.
Wishing you peace
Mary
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Wendy, my pelvic mets feel like a slow burn deep on the inside of my body on the outside of my hip...I'm texting this from my phone so I can't type a whole lot. I had scans yesterday and results today. All tumors shrunk...lymphnode 46%, breast 23% (for a total of 50%), mets continue to heal. No progression. 3 more THP for a total of 9 Taxoterrible. I just wanted to share because my last scan showed no shrinkage in my lymphnode and I was so disappointed. So don't give up hope. U just never know. Gope u r having a great day. XO Dana
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txmom, so happy to hear your encouraging results! Yay to no progression and healing mets.
Wendy, Caryn is right and there is no definitive answer. Sometimes mine ache and are like a stabbing pain, other times it's a burning sensation. As Mary said my onc is also more concerned with pain at rest, which I really have none other than the aches and pains from letrozole. So she calls the pain I have mechanical pain as in I'm aggravating the area from either using it too much, sitting or standing too long or just doing too much physically that puts strain on the areas where the mets are. I hope this helps.
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Great explanation Annie!
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Milandra, I also ALWAYS get a copy of every blood test, ct scan, MRI, pet scan. My onc just automatically hands it to me now because she knows I'm going to ask for it. Clear communication is a must. I also always see the same onc, no nurse practitioner or anyone else.
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Thanks ladies I guess it's a wait and see thing with me. Txmom that is awesome congratulation love the good news always wonderful.
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Great news, Dana! Thanks for sharing!
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hi ladies. I went to see a radio oncologist today for a cyber knife consult. He showed me my MRI, which kind of floored me. My C7 is practically gone. I don't know how my head is staying on. And the cancer is dangerously close to my spinal cord. So I guess now I'm waiting for insurance clearance, then I'll start the treatment. He said the bone will heal, but I should be careful for about three months... Just to be safe....like, careful so my head doesn't fall off? But seriously, that's a little nerve racking. I'm in danger of a compression fracture. (Sigh.....)
Does anyone have any experience with this that they can share with me?
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Stefajoy, I'm so sorry you're going through this and I know you must feel frightened. I had Cyberknife to 2 of my bone mets and SBRT (stereotactic body radiation therapy) to the other 2. My humerus was at risk of fracture with a rather large hole and I was being considered for surgery to have a rod put in to stabilize it. After seeing my rad onc and orthopedic surgeon they both concurred this type of radiation would benefit me. I had it done in December of 2014 and by the time my ortho doc xrayed my humerus in March the bone had completely filled in. He was so amazed he said they could barely tell where the hole was and that all they could see was some scar tissue from the rads. It is a very precise radiation that targets the area needed without delivering too much radiation to the surrounding areas. I wish you the best and if you have any specific questions you can pm me.
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Annie, that is very encouraging. What I don't understand is, if it's so great, why everybody doesn't do this for their bone mets?
Also, this met in my spine appeared in April. The follow up MRI was three weeks ago and showed some growth. Why did my ONC just now send me to this guy? Why did he wait until I was in danger of breaking my neck? That's rhetorical, of course.
Stefanie
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Stefanie, I'm not sure why your onc waited to send you for a rad consult. When I had mine it was because of the immediate danger to my humerus, and that was originally the only area they were going to treat, I had the planning and tattoo all done and ready to go. The following week the rad onc called me back and proposed we treat all of my mets as the others were small. He said because I was young we should aim to kill them in the hopes of giving me years of progression free survival. My last scan showed all mets healed so I have no regrets. It was a hard treatment at the time but worth it in the end. I'm really not sure why it isn't offered to everyone, of course the radiation comes with its own set of risks but my dh and I felt the pros outweighed the cons.
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Stefajoy,
I have no good answers for you but I do know that many mo's seem to use rads for bone mets only as a way to alleviate pain. I had no pain, but rads were recommended to "kill" the met. It worked and the met has been necrotic for over 4 years, with no new mets. So, I too wonder why rads are not used more often to kill off the little buggers. Take care
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I've been desperately trying to catch up and have posted a couple of times when I reached the end of a page. I don't see my posts though. Anyway, sorry I fell behind again. So much has been going on. I've missed you and wish you all the best. Hugs to you all.
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Dune, we've all been missing you! How are you doing and what has been going on since you stopped your chemo? Sending you big hugs, Annie
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Dune! So glad to see you post again, you had us worried. What's happening with you? Are your still on Ibrance? . I can't keep up with this thread either, even as a lurker.
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Stefajoy - how terrifying for you! And how sad your MO wasn't more proactive. I'd recommend a flying b--ch slap, but you don't want to hurt your neck.
Seriously, I don't know why they don't do the targeted radiation more. I had rads to my spine and femur. The spine has been necrotic for almost 3 years and my femur is filling in (I did get the rod). So radiation should help. But how horrifying for you. I'm so sorry you're dealing with this.Dune! Been thinking of you and sending lots of love.
Hugs to all,
Terre
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Stefajoy, I know the fear you are feeling. I've had cyber knife and IMRT to C5 and T-1 and 2 all across both upper ribs. It is a very precise treatment which can target the C-5 tumor with minimal damage. It has given me a lot of relief. I'm guessing your RO will be able to get most of the tumor in C5 with radiation. I have compression fractures in a number of my vertebra which are painful. Are you having pain in your neck? Ask your RO if you need a neurosurgeon consult as well. I ended up having surgery in addition to the radiation to stabilize my spine. I wish you well as you move forward.
Dune, good to see you again.
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Stephajoy, if I were you I would call and tell them you want a consult with an orthopaedic specialist NOW. I was diagnosed at the outset, and my one lumbar was really chewed up. My oncologist did radiation, but insisted I get spine stabilisation first. She did send me to a wonderful and very particular orthopaedic surgeon...you know they're good when all the nurses complain about how persnickity he is.I was told the reason why I needed the stabilisation was because when you zap the tumour, it retreats and leaves the empty space, and the vertebra is left more unstable for a while. As far as I know, nothing has filled in and my surgery was a year ago. (But then again, I'm the one with the doctors who won't give me definitive answers.) Now, it may be that your lesion isn't as bad as it looks to a layman, but I'd rather hear that from a specialist! The doctor's idea of "careful" may mean "don't go bungie jumping", but again, you need to know. Obviously your head won't fall off...but what else could happen?
As for why they don't use radiation right away...well, radiation is bad for us, and zapping it through our bone marrow isn't good for our immune system. Plus there is the lifetime maximum of radiation...you don't want to reach that too quickly if targetted therapies will take care of it by themselves.
Can I ask you if you had any symptoms? It bothers me that my CT scans don't cover the neck area. I've been working up to 50 hours a week doing intense work on a computer with two monitors, and my neck has been getting a bit crunchy. Likely just arthritis from an old whiplash and tamoxifen, but after not knowing how close I was to possible paralysis, I've been a bit paranoid about any changes in my body.
As for my doctor issues...all my oncology appointments are supposed to be with the same doctor, and I usually see her walking around. It's always a surprise to see who the guest oncologist of the day is when I get in the room. I also don't have access to my test results. Once I asked for the CT scan report, and I got a photocopy of the radiologists two sentence summation...the same one that a stranger reads to me after I wait for hours for an oncology appointment. I know, I know...I sound so bitter! I understand that my oncologist is one of the best. But as an information junkie who wants to have some responsibility for her own health, I'd love to have an oncologist who is, at heart, a teacher. I see a chemo oncologist often when I go for my monthly Xgeva shot, and I asked her for one of my levels...she told me, but smiled and said if there was anything abnormal they would tell me.
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Dana - Congrats on your results! Awesome.
Dune - Welcome back - we missed you! How are you? and how is Dusty? Is he OK? My old dog is getting worse all the time. This morning, it seems as if he has a cramp or something. He doesn't want to eat or get up. Vet prescribed pain meds so gave him a little more this am. It's happened before but my heart breaks every time. Hugs right back at you.
Stefajoy - I have no answers but wishing you the best specialist and care. Sorry you're dealing with this.
Wendy - pain can be different. I have mechanical pain like Annie described, dull ache burning or stabbing. And joint aches from Femara. Those hormone blockers can certainly give arthritis like pain.
Deanna - I hope you are enjoying your trip with hubby!
Rads for me on Monday on femur, strictly for pain relief.
Wishing you all a good day!
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Looks like I'll be getting rads sometime before the end of the year to kill 8.5 cm and 4.3 cm mets somewhere in my right and left hip areas - the ilium? I think. Had an informative appointment with my onc today after learning of progression. Reason for rads she said is kill em - faslodex will get the little mets on my spine but it would take too long to kill the larger ones with Faslodex alone so rads should do the job. When I did ask about continuing Femara with Faslodex she said she'd like to see if Fas alone will work and if it needs a booster, she'll add Ibrance. I've noticed quite a few women on BC.org taking Ibrance. I hope it's working.
Amy
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Linda & Amy - good luck with the rads. Nuke those little cancer cells into oblivion!
My husband found this article - really interesting and from what I'm reading and hearing from oncologists, this may well be the wave of the future: http://www.sciencealert.com/algae-has-been-enginee...
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Stephajoy, Sorry to hear of your condition. I have a collapse in same neck area/upper spine as yours I think, and they talked about injecting a cement-type thing to support it - not sure if they will do it, though, since the pain in my lower or mid spine is worse, so I would still be in pain. I have to get another MRI since the lower one gave no answers - wish they had done the whole spine instead of 3 MRI's - worried about liver and kidneys with all these scans and MRI's, hopefully the next MRI shows something useful. The radiation doctor suggested I wear a neck brace (kind of uncomfortable, but I wear it driving), and I also found a velcro-type brace in the basement which is somewhat helpful for my mid-lower back instability, but I hope they can figure out a better solution. Will let you know how the injection works if they decide to do it.
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Thank you all for thinking of me. I had some bumps along the road. Nothing major. Lots of falling asleep when I try to do anything on the computer. In fact, my eyes are closing now, but that is deliberate. The little guy will be back in about an hour and I wanted to sleep. Other than that, I don't know if it might be the letrazole or the increased pain meds in response to the increased pain from the letrazole. Such a crazy ride.
Dusty is doing great, Linda. He wants out of the cage right now, but I don't want to take the chance of rolling over him.
I'll check in later. I know several of you are having some challenges
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