Bone Mets Thread
Comments
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Yah, I would be so lost without this forum.
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Barb, I hope you're feeling better. Chemo seems to stay with some of us for awhile. I had it in 2004 and I was tired for a long time after it was over. I was pretty miserable and after my 3rd chemo I said "I QUIT!" Then I almost had a nervouse breakdown over it and went back and did the other 5. So there were 5 weeks between the 3rd and 4th one instead of two weeks. Maybe that's why it came back, who knows. I agree about the walking. I see a lot of people say that once they get started they feel better.
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Thanks HLB. I will try to let go of the worry. I know it will all work out and its just a matter of time. My Mantra is "I will be okay"
Barb312: Hugs to you. I think its great that we can do even a little of the things we used to do or even that we are willing to try. I used to jitterbug every week, I loved to dance, but right now, I'm sidelined. My goal is to dance again someday, maybe it will be the foxtrot or the rumba instead
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Rangermom--I hope you dance up a storm.
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Stormy,
Ah, that speaks to the still controversial existence of oligometastases . I have only one bone met. Both my primary mo and my second opinion mo said I could do chemo if I wanted. They provided me with, what little, research has been done on the subject. It was not an easy decision but I decided to just do rads to the site and stick with hormonals. I know chemo will be in my future but I have been NED for 15 months with no pain and only minimal SE's. My met is necrotic. There is no cure for bc, just people lucky enough to remain in remission for long periods of time and if really lucky, die from something else. I'm ok with chronic!
Caryn0 -
I don't think I would have the chemo either. I did wonder if I shouldn't have zapped them with rads as a better chance at a cure or even a long term remission. Not really realistic because I have 5 spots. Althiugh the one article I read about it said 2 or less areas with 5 or less mets. One or two seems worth trying though! I'm just not sure I believe chemo does too much. I think the AIs are better at shrinking/killing the cancer. I guess they do that for the undetectables though, like adjuvant for lower stages. Then I guess it makes sense. But not really because the AIs are systemic too. This is what happens when I think while typing instead of before typing. Its like talking to myself.
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Caryn,
I am okay with chronic too. I read that with oligometastisis there is a 1-2 percent chance of cure with chemo. I didnt think those were good enough odds to put myself through chemo again. i know chemo will come again someday, but hopefully far in the future. it is a tough balance between quality and quantity of life.
Rangermom,
I would be upset too. They're supposed to help us interpret scans. when they leave stuff out, it confuses and worries us. Definitely ask your onc!0 -
Kay,
Yes, 1-2% is what I've read too. It's hard to say if, in the long run, I've made the right decision by not doing chemo yet. My crystal ball is currently out of commission but I'm doing well and carrying on pretty much as I did in my pre-bc days, so no complaints. Well, I do have to go for a port flush tomorrow so not quite pre-bc!
Caryn0 -
Dear, sweet Chrissie,
So sorry to hear about your mum. I buried an 18 year old daughter & then my mother. What I remember about those times was the sheer exhaustion & carelessness in the beginning. It's a time to look after yourself & let those who offer support give it if it suits you. Hugs from here. Jeannie
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I think one of the hardest things about this disease is that every ache and pain scares the heck out os all.
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agreed Barb!!
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Poppin in to say, bone scan showed no mets to the lumbar spine or anywhere new. The onc says I'm stable but if the back pain persists we'll do a MRI. Said it could be my rheumatoid causing the L4 to show a spot on xray. I get my CTC test results next. If they are <5 I'll be happy.
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Rangermom, my onc explained to me a little while back that one new met does not mean progression. There has to be an increase of (i think she said) 30% or a new organ before they consider it progression. That helped me a lot to understand why they said stable yet there was a new spot in my spine.
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Thanks Jeannie, hugs are much appreciated.
Rangermom that's really good news about your scan showing no new mets.
Love n hugs for all. Chrissy0 -
Ranger mom. Have a great weekend and enjoy the good news.
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I guess you all know I am 74 and still going strong. I have my days but trying to think positive all the time. I have been a widow for almost 10years. Reunited with my high school prom date in Indiana 9 years ago and brought him back to Florida with me. He is one great guy. Hope you don't mind a little personal stuff. We laugh a lot. Hope to start playing golf soon. Have a nice weekend. Barb in Fl
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RangerMom - I would definitely ask the onco about the reports that concern you. Tell him to explain it in English so you know what is going on. It is probably nothing to worry about but ANY concern you have should be answered in a way you can understand. Every consultant who reads the scans has his own terminology and they can vary greatly, but wind up actually saying the same thing. I have given up trying to figure out why the people that read the scans cannot use the same language! Anyway do ask about it. There is no reason you should be upset or concerned. On one of my scans the idiot was looking at someone else's history chart when reading my scan, so boy was that a mess until my MO got in touch with him and told him his report said I was 46 and I was not 46 I was 62 and would he re-evaluate the results of the scan with the right scan for the right personal history. I bet the other person was terrified because the MO said that patient was Stage II and I am Stage IV! Mistakes happen that should not happen. Wishing you well and that you reach stable soon.
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Good Morning Ladies,
Question for my Bone Mets friends. I was dx in Sept with bone mets to the left rib, one area. I started chemo in November, 4 rounds of AC followed by what will hopefully be 4 rounds of Taxol. I just had my second on Friday. The Taxol has been much harder than the AC for me. Lots of muscle pain and finger pain. Anyway, I am going for a bone scan next week because the CA markers were rising with the AC and my MO wants to see if there is progression or not. If there isn't progression she would like me to see a surgeon about having the rib removed. I was orginally dx DCIS in 2008 and had bmx with silicone implants put in. The left implant sits very close to where the rib pain is the worst. I keep asking if I should have the implants taken out. If I have no progression and go forward with the surgery they will probable take them out then. Has anyone had a similar circumstance??
Rangermom, I was really happy to hear there were no new mets. I hope you find and answer or relief for the pain soon and are back to dancing!
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Teacher I haven't had anything like that nor have I heard of anyone like that. I just wanted to let you know that I hear you.
Hoping you get some answers soon and there is no progression.
Love n hugs. Chrissy0 -
From UF&Shands Mestatic Cancer Program: Our method for treating cancer uses a target tpe of radiation called stereotatic body radiation therapy (SBRT) to pinpoint the metastatic lesions and destroy them on contact. Because SBRT has the ability to eliminate tumors with less damage to healthy tissue and more comfortable recovery time than other methods for removal, it is particularly beneficial for patients who are not candidates for surgery. Shands says organs involved most often in met.breast cancer is 80% lung, 50% liver and all others 50% They treat patients who have 10 or fewer new lesions. I found this on their web site and got a packet in the mail yesterday. I talked to Cathy Hartley (904-588-1472. Very informative. She said the treatment is around 5 days. I am going to talk to my new onc about this. You can have it in Gainesville or Jacksonville, FL She said they go for the cure. Also informtion in packet is very interesting.
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Barb312 what is the web address. thanks!!!
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I went to Shands Cancer Center University of Florida.
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Barb, thank you for this information! I went to the website and signed up for more information. I was probably a little hasty in my excitement because after that I thought maybe I should look into if anyplace closer does this procedure. They do at UCLA but it looks like Shands is the only one that is really trying for curative intent. And they want to get frequent scans to stay on top of any new lesions that pop up so they can treat right away. This is what I've been wanting and concerned about not being able to get it because apparently it "won't make a difference". Maybe it won't but its so exciting to see them doing this!
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Dear Barb,
Thanks for the info. I am also going to share this with my onc and write for more information.
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I was diagnosed with spinal mets on 7/09. Been taking Xeloda for 3 years. I am having a pet scan on 2/4, Most most recent complaint is an aching in my butt cheeks. Sounds dumb, I know but it was so bad last week I was hunched over. It went away but now today I woke up with the same ache. Anybody experience this?
Thanks,
Gigi
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That's a much shorter course of radiation therapy than for early stage. Cool. This is the basis of the treatment:
One-third of breast cancer patients were free of tumor regrowth after three years. Six years after treatment, almost half of breast cancer patients in the study were still alive.
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Found the web site for UF and Shands
http://www.ufandshands.org Just did a little exploring on their site and did the self assesment. They do not work on bone mets
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WHAT??? I was SO EXCITED about this!! UghhhhhhHh :-(. Well, I think this is just really exciting for a lot of people. Its so disheartening to be told you will never be cured, treatment is to control symptoms, etc. It seems like some doctors just give up and lump everyone with mets together, and its not right. There is a big difference between people with many organs affected and people with a few mets and no symptoms. This doctor really believes in trying to cure people and watching closely for new lesions to pop up so they can zap them as soon as they are found. That's the one thing that bothers me is that there seems to be no sense of urgency with some docs, like it won't make a difference to just wait wait wait. Oh well, this is still something to keep in mind for the future.
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Ladies,
I hope that I am not interfering too much on the conversation. I have a question for the long time bone mets ladies.
My wife has bone mets in her spine. 1/2 of t-11 is gone. There is a fracture there as well. There is also damage to 4 other spine areas, and it is in her ribs, hip and shoulder. She is on XGEVA and has some bad times but is able to function very well ( does most of what she want, drives, hobbies). Thank God!
We live in a 2 story condo. I have been trying to get a1 story house just in case things get worse. She has looked at 2 story houses that she likes better. I can't afford to buy and sell twice, and in this market it seems we keep losing the bids on the first buy.
So finally the questions. Am I crazy for limiting our search for a 1 story? Should I reconsider a 2 story that she likes? Should I keep the cash for other stuff she wants and needs? I just dont know how bad it will get for her so I am looking for the benefit of your experience. I am concerned the stairs will really be painful for her.0 -
I think of my sister when you asked this question. She loved her house. When she broke her femur and had a rod put in she could no longer get up the stairs. They were narrow and steep -- no way a wheel chair, or any other device could go up them. They put her hospital bed on the first floor in the family room so she had access to a bathroom and kitchen. Because she didn't want anyone to know that she had cancer she stopped having anyone come to her home except for family. She and her husband had hospice come to the house when it was time.
So if you have those basic needs on the first floor then it is possible to stay in the condo. But quite honestly, that's the dismal answer and my sister was very negative about how she dealt with her cancer. She gave up quite early in the fight.
I'm wondering why you feel the need to sell right now. It sounds like your wife is very active right now despite the spinal damage. And it also sounds like she not ready to give up like my sister did. There still is some hope that the Xgeva will repair some of the damage. Heaven knows I'm hoping it will repair all the mets that keep cropping up for me (mostly in my pelvis).
Selling and buying a 1 story may seem like the practical thing to do but it just doesn't sound like your wife thinks it is necessary right now. And it might just squelch her positive attitude if you keep trying to go down that road.
Just my thoughts.0
