Bone Mets Thread
Comments
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Rangermom I'm so sorry that your family is not giving you the support you need right now. I hear your fear but I'm sure once your treatment gets underway and you see it working for you your fear will dissapate some. Stage IV is something that no one wants to hear but there is still hope for years of life.
Love n hugs. Chrissy0 -
Chrissy, If you are stable, can you have pain now and then? I have been having pain in the rib area(Not constant) where I originally had mets. Bone scan in July still showed mets in ribs but deteriorating. Due for MRi in Jan. Going for Zometa Monday. Thanks, Barb
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Ranger mom-
There is a lot they can do for metastatic cancer. You probably have a lot of time left. Most people hear "stage IV" and think you have days or months to live, but that is rarely true! Hang in there and be sure and tell your daughter and significant other that their fighting is hurting, not helping, you!0 -
Barb, I was dx with extensive bone mets last March. Have been on Tamoxifen, Lupron and Xgeva since then. My last PET scan showed almost all the mets have regressed however I still have pain in the area of the mets. I think that it is due to the fact that the bone is damaged and not as strong even though the cancer is receding. Don't know if that is correct but I'm good with the regression on the scans!
Rangermom, I hope your family comes to grips with your dx soon and realize it is about supporting you not them.
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Wow Rangermom, that whole scenario sounds a lot like my moms sisters family! Someone always starts a fight. It never fails. This is not about them! Hopefully they will get a grip. The ladies are right, you probably have a lot of time. Its so hard at first. It will get better. In the meantiime you might want to ask ffor some ativan. Maybe share it with your daughter lol.
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Barb even though my mets are stable I still have some pain in that area. I think a lot of it is due to the damage and the fact the bone is trying to heal. If you have ever had a broken bone you would know how painful mending bone can be.
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kayrnic
Without meaning to be controversial or argumentative, I think we need to temper our language about stage 1V metastatic disease. While we need to be positive about our approach to this disease, I think it is unhelpful to say that stage 1V "rarely" means 'days or months to live'.
I am all for people having every reason to be optimistic and to fight tooth and nail to conquer this deadly condition. But deadly is what it is. Let us fight them on the shore, fight them in the sky, but never let us forget that deadly is what it is. As the sister of a fine young lass who died recently from mets, as much as I don't want to believe that death is inevitable, neither do I want to believe that it happens only to the few, who, by dint (perhaps) of some self-induced misfortune, were one of that "rare" breed that death took it upon itself to visit by whichever means hospitable. That is at least how I view it when I occasionally bump into death as it is countenanced in the stage 1V boards.
Fight it with all your might indeed. But I say we have enough enemies to encounter (think, eh, stage 1 october pinkinshness) without saying to our own stage 1V class that we seldom meet death on the road.
Ranger mom, all the very best to you and god bless for the future.
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Lyndadoll I'm sorry for your loss but your post is actually inappropriate for the thread. We as stage IV do understand what it means and don't need to be told by a family member not the sufferer what it means.
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I really don't think we need to be reminded of that, and maybe I'm wrong, but most of the time we do have more than months! Very sorry to hearr about your dear sister.
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Fight all you want but don't eVer forget you're going to die! WTF?!
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Lyndadoll I am sorry for your family's loss but as Chrissy said we are all too well aware of what stage IV means. I believe Kay was saying that from dx we most likely will have more than days or months to live. That certainly seems true in our experiences.
When I was first dx and did not really understand what stage iv meant to my life this board is where I found support, information and the realization that it did not mean that death was neccessarily around the corner. I am thankful every day for the ladies on these boards.
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Guys,
I think Lyndadoll is a troll. No bio, no history, and she just hops on to make an innappropriate posting? So, don't sweat it.
And, Lyndadoll, if you aren't currently living under a cyber-bridge, your grief has caused you to lash out. Please don't do it on this thread.
Jennifer
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Hi, Ladies -
I wanted to post something positive...I have lung and bone mets dx'd in Oct '12. As far as the bone mets - they are C2, L5, Left neck of femur, Sacral spine, and posterior right iliac.
I've also had lower back pain most of my life, and found in 2008 that I have 3 bulging disks in the spaces between L2-L5 with an annular fissure in L5. So - if I 'jar' my lower back, I'm in a lot of pain. So basically, I'm used to my lower back hurting a LOT all the time. It no doubt has gotten worse over the last couple of years - and I chalked it up to getting older (46).
Well - ok, here's the good part. I started Tamoxifen a month ago when dx'd, and I swear to god, for the last week, my lower back is not killing me anymore. I cannot remember when my back felt this good. Also, the very sore neck that I had (c2), that pain has also abated. I have to believe this is because of the Tamoxifen.
Now - when I very first started taking it - I had a real flare of pain all up and down my spine. Just sitting at my desk at the computer was difficult. I kind of thought I was crazy or imagining it, until I read that this can happen when starting Tamoxifen and or chemo (both of which I did within 2 weeks of each other).
But then, suddenly, very suddenly in fact - I woke up one morning, and I wasn't in this intense pain. So - I am taking this as a good sign.
As far as other SE's from Tamox - at first (first week), I had some hot flashes - but then, that totally went away. Right now, my period should've arrived a couple of days ago, and hasn't, which is definitely strange for me, as I'm usually like clock-work. I don't even feel like it's coming at all. Odd. But - ok, whatever! I'll take that SE all day long.
Hope you all are finding relief for your pain - Vicodin never even touched my back pain. If it starts hurting me again, I'm asking for the big guns. (But I hate feeling doped up...).0 -
Hope everyone had a nice Thanksgiving. For me it was a little sad since this is my first holiday since being diagnosed only last week with 2 mets to my spine. Still managed to have a few laughs and smiles with visiting family so I am grateful for that.
If all my biopsy results are back I will be meeting with my MO on Monday to discuss treatment. Since you ladies are the experts I am curious what your doctors recommended. Heavy chemo or hormonal a first? I am already on tamoxifen so I'm assuming that will have to change (peri menopausal). I am triple positive so any thoughts on TDM1 would also be appreciated since that has been mentioned as well. I'm truly trying to educate myself more before our meeting and any advice would be welcome.0 -
Swimmom3, I was diagnosed during the late Christmas season 3 years ago. I distinctly remember going to Christmas parties and imagining myself not e or this is one of very few left. It was a very meloncoly and lonely Christmas as I didn't want to spoil anyone else's so kept up the cheery outside. That initial shock has gone and I have learned to enjoy the now. I hope you are able to enjoy the season and take in the little miracles of happiness.
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Thanks for the answer to my pain problem. I got off of the Lexapro and feel like myself again.(didn't realize that it was making me more depressed) Had help from my wonderful sig other and we put up the tree and we are ready for a holiday season. I don't care what anyone says, I plan on being here for many more years. Thanks for the info Chrissy and Sonny. Barb in FL.
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swimmom,
I had one spinal met diagnosed in March of this year. My guess, is they will take you off tamoxifen and try aromasin or arimidex. However, you would also need Lupron injections on these meds (to suppress the ovaries) as they are for post menopausal women. They might also discuss the possibility of an oopherectomy. You will also be back on herceptin if the pathology is still triple positive. Tamoxifen is working for me right now, but I am always looking ahead to what might come next. I also did ten treatments of radiation to the met to avoid a vertebral fracture. Was never really in any pain though.
You may very well be a candidate for the TDM1 as well. Be sure to ask.
There is so much that can be done to prolong life and preserve quality of life! Be sure and let us know how it goes.
Kay0 -
Frapp: You described exactly how I was feeling--trying to imagine my empty chair and realizing afterwards that I was ruining a perfectly good holiday feeling sorry for myself. Luckily my oldest sister knows how to distract me and got my spirits back up. I will do my best to look for those miracles because I know they are there right in front of me.
Kay: Glad tamox is working for you. I know I'm going to have to switch to an AI and blood tests will have to determine if I'm in full blown menopause yet (over a year since last period so it's quite possible) but if not I'll take shots or quite frankly take all the lady parts since I don't need them anymore (especially if they're trying to kill me).
I'll let you know what the doctor says and I'm sure I'll have lots of questions so I hope I don't pester anyone too much.
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Swimmom there is no such thing as asking too many questions just ask what you need to know as there is always someone who is happy to share the knowledge.
Love n hugs. Chrissy0 -
RangerMom,
Just what you needed, for the people you love to get all nuts and fighting. Would be nice if they could try to remain calm and support you. Maybe tell them straight out you absolutely do not need this kind of stess and upset right now and they need to knock it off!
Sorry, but I was incensed for you!
Welcome to this board. It will be a lifeline for you. Lots of excellent info and support from orhers going through same things you are. Once you have a treatment plan in place things will calm down and you will feel better. Please do keep us posted. I am wishing you the best. Gentle hugs to you.0 -
The Perjeta/Herceptin/taxotere is probably what you should start with since it's only approved for first line treatment. There are many women who can't get their insurance to pay for it since they have already tried a different chemo.
TDMI can used after many other chemo and treatments have failed.0 -
Chrissy: Thanks for your kind words. I feel like I'm in a new territory now even though I was diagnosed with BC over a year ago. Hence all the questions, so I feel so fortunate that a forum like this exists because I feel like I'm learning everything all over again.
Rangermom: I'm so sorry you had such a bad day on Thanksgiving. You need support and people should understand that. Sending you extra hugs that everyone pulls it together to give you the love you need right now.
Spamgirl: Am I allowed to try the PHT combo if I already had TCH in a neoadjuvant setting? I think the TCH would be considered a first line chemo so I'm not sure if I qualify.
Thanks again ladies. Going to enjoy this last day of break before work starts up again tomorrow.
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It's the first line treatment after being dx IV.
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Hi all,
I recently finished 1 year of Aredia infusions, in addition to daily Arimidex. My mo wanted to stop the Aredia altogether, saying the data is unclear on how long/short a time one should be on it. She is worried about increased risk of onj, though I show no signs of it. We talked and I told her I felt like I wanted to do more than just Arimidex , so I am now going to have Aredia infusions every three months.Any thoughts on this? BTW, I just had a clear PET scan.
Caryn0 -
That is awesome about the PET!! Hard to say about the aredia. The way it works is it stops the process of shedding old brittle bone, so it builds up the bone but its a buildup of brittle bone and if you're on it too long you increase the risk of fracture. But I don't know how long is too long. I do XGEVA shots and if they are similar, there's also some eveidence that it may actually prevent the bone mets in addition to the building so that would make me reluctant to stop it. I guess every three months would make me feel better than stopping it altogether but I don't know what the magic timeframe is. When you say the PET is clear, what does it look like where the bone mets were? Can you tell they were there? Just curious.
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They can see where the met was, yes just one, but it doesn't light up and is considered necrotic. Xgeva and Aredia are both bisphosphonates, I believe. My mo's greater concern was not bone fracture but onj. Still not common, but she sees it more in those who are on bisphosphonates for very long periods of time. Her feeling is that since there is no magic timeframe for taking bisphosphonates, she prefers to be a bit more conservative. ONJ sounds like no fun!
Caryn0 -
My onc recently switched my aredia infusions from monthly to every three months. I too have one met. Next scan is in January! I hope it's clean like yours!
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My onc has talked about lengthening out the time between Xgeva shots once I hit the year mark. I think we will slowly increase the time to reach every three months. My understanding also is that the reason is the build up of brittle bone vs strong bone. I'm not too concerned with ONJ as long as I don't have major dental work done. I do get my teeth cleaned every four months now to help try and avoid dental problems.
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just finished 2nd zometa a few days ago. getting it 1x a month for two years. at least that is what the plan in. tumor marker came down from 110 to 93 in a month. according to rad onc, the zometa heals the lesion. she said like a fracture. completed the 25 rads to spine; and now on femara and the zometa. PET scan end of dec. apparently, cant do PET scan until 6 weeks after last rads. so far so good. i am always optimistic. but, yeah, the horse is out of the barn, just praying we can get it back in the barn. hah diagnosed end of august. so far so good. keep on, keeping on* time will tell.
diana
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Diana I think this met will be gone at your next scan. I hope you don't get another one for 50 years.
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