Bone Mets Thread
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Had a brain mri/ct two months ago on head and neck for numb chin. It was clear. Now pet/ct shows met to chin and side of skull which accounts for numbness there and crappy peripheral vision. Terrified.
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Patty P- (((((((((((((HUGS))))))))))))) So happy to read this!! I am just so happy!
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Mary, I love Basil too! Way too cold here yet to plant that outside.. It is very temperamental to the cold nights. Hope your aches are better too.
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Dee, I always feel tired and unmotivated and if I move too much I ache, if I don't do anything I will ache too, so we have to find the right combo I guess. I want to blame all my aches on the letrozole whether it is or not. I have scans at the end of the month so hopefully we all get great reports!
lChristina- Good luck- I am sending you all positive vibes-
LindaE- Xgeva shot this month (5 days later) really had my met areas hurting... I thought my rib was broke again, been getting them since October each month and it went away after a day- It also screws up with my electrolyte panel and I had a twitch above my lip. That resolved as well. MO said it was prob the low calcium, etc that the wonderful shot brings on.
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Dee, If you are experiencing pain, and the pain meds help, please take them. That is why the were prescribed for you. It's terrible that you have to chase down your MO for things that should automatically be scheduled. I always have my labs, infusions, visits scheduled three months at a time when I check out after my office visit. If updates need to be made, they are pretty easy. It has worked out well, but I am sure each facility operates differently. I hope you get things straightened out. It is bad enough that we have this disease, we don't need additional frustrations thrown at us.
PATTY, PATTY, PATTY, it is so good to hear from you. We have all missed you. I am glad you are feeling better than you have in such a long time. Your family must be very happy to have you home. Woohoo!
Mary, The lupine looks pretty. There is something peaceful about it. I don't know what it is. I am glad that you were able to work in the garden with your husband and son on Mothers' Day. It must have brought you some warm memories of your Mom. Take it easy and rest up until you recover from overdoing things. It seems that many of the people on this thread have been doing too much recently and are paying the price for it. I think it is time for me to visit each of you and teach you how to be lazy.
Cristina, I am glad you posted. We haven't heard from you lately. Good luck on your scans tomorrow. I hope the results are excellent. Friday isn't too long a wait, but I am sure it will seem like a long time to you.
Vicki, How are you doing? You get the results of your scans on Wednesday, right?
Valerie, if you are lurking out there, here I am sending you a "hi" and a hug. I hope you are doing well.
Hello to everyone else. Enjoy your week.
Lynne
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Hi everyone!!
Thank you to all of you for your kind words of support. I don't have the all over bone pain as bad today, so I'm hoping all of you were right, that maybe I was doing a bit too much. I feel like I need to keep moving, keep ahead of the cancer... stupid thinking I know, but when I sit down & do nothing I feel like it will sneak up on me. It's part of what I hate about this disease, the mind games as well as the body issues. Someone said on the FB mets page today, why can't our MO's tell us just once that the SE's of our meds will be euphoria & weight loss instead of depression & weight gain???
Rachel, I'm sorry that you seem to have some progression. What are you taking? Have you talked to MO about the next step? Sorry, I can't remember your specifics. ((hugs)) I totally "get" the terrified thing. PM if you need to "talk" about it, please.
Patty, good to see you here, wondered how you were doing.
Mary, love the lupines! Mine have leaves, but we are a ways off from having blooms.
Geez Lynne, nagging me to take my pain meds, are you sure you're not my PCP??? ;-)
Good to see a few more faces here, I was missing you, so hello to all. I'm heading out to the garden..... to read a book. cheers, dee
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Robbin, Deb---My youngest was 13 when I was dx, was stage 4 at get go. I will see him graduate next week from HS. I have lived to see my oldest son become a physician & my oldest working on her PhD. I now look forward to seeing grandchildren, even though only my one son is married & plans on waiting couple more years. Stay positive, enjoy everyday w/children. Sue
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Patty - so happy to read your post! YAY!
Rachel1 - I'm so sorry about your chin and skull mets. It must be so uncomfortable. Any plans for rads in those areas? But a clear brain MRI is excellent news!
Mary, I started basil from seeds under lamps this winter. Have been eating it fresh in salads, I love it. Still too cold here to plant them outside.
Loves - Oh that Xgeva did quite a number on you! I assume they check your calcium levels prior to tx? My nurse told me it cannot be given if levels are under 2.50. It is one of the lovely SEs.
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Lynne - Yes, I should get the results of my CT and bone scans on Wednesday, followed by my initial Zometa infusion. I don't know which is making me more nervous though.
As I read the posts, some have good results from the Ibrance/letrazole combo at first and others take longer. And then I read about a downturn in results. Ugh. I have found a silver lining to this treatment though, I've lost 20+lbs, which I did need to lose
I am confused by the pain. Does that mean you are getting better or worse?_0 -
Hi ladies:
I have a couple of questions: How many still work full time? Do you suggest going on disability or continuing to work.
I just advanced for the first time in 2 and a half years, Spot on 7th rib, sacrum and pelvis. I was only on Xgeva and CBD oil (but only did the 3 month rick simpson regime in 2014 and stopped). I finished the 2 years on xgeva In Jan 2016 and now scans which I do every 6 months showed this. I still say the xgeva helped but my doctor will not do longer than 2 years. Anyway I am trying to decide what to do, I am single (big wedding planned in November.... well maybe.) We are starting on arimidex or a monthly injectable next week and he suggested Imbrance but I am opting out of that one.
I am also wondering if anyone has spine mets that can answer a few questions. Like paralysis or incontinence issues. I do not have those but my doctor suggests I may soon.
Also does anyone take an injectable hormone blocker.
Thanks in advance.
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Hi dixiebell,
I see that we joined bco at about the same time. I am coming up on my five year mark in July, and was essentially stage IV from the start.
To work or not to work is dependent on many things. If you are physically able to work and like your job then you may choose to continue, particularly if the income is needed. Beyond that, you need to evaluate your unique situation (health, economic, insurance and what you really want).
Save for a short medical leave I have worked full time since dx. I love, repeat love my work. It is a calling for me and gives me tremendous purpose. My children are grown, so that didn't figure into my decision. Most of all, I am not disabled, so I would feel uncomfortable taking disability. I am productive, passionate and stimulated by my work Mind you, should I become unable to work, I won't hesitate to go on disability.
There is no rule about whether you should work or not, nor should anyone else's decision color yours. Do what's best for you and your family. Take care
Caryn
PS: I was only on a bone strengthener for two years too.
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xbrnzgrl Thank you so much! I have really great long term disability through work, I am missing more and more work and am so afraid of losing my job, then not having anything. It is a very hard decision. I travel every week to clients all over the world and am only home on Fridays and sometimes am gone 3 weeks at a time.. It gets hard to go to scans test and appointments. But I do love my job too and have great benefits. Very hard decision.
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I don't post often, but need someone's advice. I have stable bone mets as per scan three weeks ago. No organ involvement. But my tumour markers had risen to 474 on tamoxifen and Xgeva. So my onc has changed me to Faslodex, saying that if he didn't look at tumour markers he would leave me on tamoxifen. I can't understand how I can have stable bone mets but rising tumour markers. It's really stressing me out, as last year when my tumour markers were 120 but I had stable healing bones, my onc changed me to tamoxifen. So is my onc treating tumour markers
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Sarah, sounds like he is! What kind of scan did you have? TM seem to creep up for some without any progression. I think inflammation plays a part in rising TM if a scan shows stability.
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Dixie- I had 18 year remission from original ILC (see signature line)- It was slow moving to return and because I was so far out --protocol didn't call for any yearly scans. I did do hormone therapy for 10 years after original diagnosis. 5 years of tam and 5 years of letrozole.
I think in hindsight now... if I was on hormone therapy life long I would have never had any mets. I am hoping that hormone therapy in our situation will be equal to what we do to control diabetes.0 -
Patty - So good to see you back!!! We missed you.
Rachel - Sorry to hear about the new developments. Surely there is something available to address these. Thinking about you!
Loved to see all the Mother's Day posts...I was able to spend Sunday with my oldest daughter and her family on Sunday and am heading out to visit my youngest this coming weekend. Can't get enough time with them, but I try to be cool and not too desperate when we are together. Who knew you could be fierce, strong and pathetic all at the same time :-)
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I received a wonderful Mother's Day gift - the announcement of my DD1's fifth child. She has four under the age of 7, all of whom are precious and delightful in their own way. So while we're in the throws of planning DD2's wedding in December, we have a new life to look forward to as well.
Just wanted to share this news with my BCO buddies.
Hope you all had a great Mother's Day.
With love and hope,
Amy
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Dixiebell- I too have two mets in spine and I hope I want have a problem with paralysis. My MO hasn't told me that. I am so sorry to hear of the progression but at least it is still confined to bones. Amen. Hope they zap it quick and you go on for another five years with nothing else. I was wondering why you opted out for Ibrance. Is there something I need to know about it cause I'm taking it for just over two months now.
Glad to see how some had a wonderful mothers day. Hugs to you all.
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Amy, Congratulations. You are doubly blessed, a wedding and a new grandchild coming. DD1 must have a very busy, active household. Mothers' Day was the perfect time to make the announcement. What is the due date?
Sarah, I don't understand why your MO would use TMs to determine when to change treatments if the scans show no progression. TMs are just not reliable for some people. As Carol said, other things, such as inflammation can cause an increase. Have you thought about getting a second opinion? Has your MO given you a valid reason for making a change. Is it truly just TMs driving his decisions? If so, please get a second opinion.
Rachel1, When will you meet with Onc or radiologist to discuss a change to your treatment plan? I hope it is soon because having a plan in place and treatment started can help get you through this. You are strong, and you can face this and get through treatment. Remember that you are not alone. We are all here for you. You can share your fears, rant and rave, ask questions, do whatever you want here. Sending a big (((hug))) your way.
Kathryn, I am glad that you are able to spend time with your family. I have been able to see all but one of my sons and their families over the past couple of weeks. Some came to celebrate my birthday, and we saw others on Mothers' Day. The last one is planning to visit us in a few weeks.
Cristina, I have been thinking about you today as you go for your scan. I hope it went well and they you get good news on Friday.
Today it finally feels like spring. The sky is a beautiful shade of blue, and it is 67 degrees and sunny outside. I did some work in the garden, then I decided to make this the first day back on my daily walking routine. I walked 2 miles. I probably should only have done one mile because I am really out of shape. They might have to lift me up onto the table for tomorrow's CT scan because I might be too sore to move.
Love to all of you. Thank you for being here.
Lynne
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Amy-
All wonderful news! DD#1 has her hands full! All so exciting! Thanks for sharing!
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dixiebell, You can pm me and I'll fill you in on my spine tumors and my risk of paralysis and what I've learned.
Patty- Hi and so good to hear from you!!! Your spirit has been revived. Big hug to you.
Rachel1,Does your RO or MO have a plan for you?
Amy, how nice to have such wonderful events to look forward to. You must be so excited.
tedmom, Sometimes just getting through the first time with Zometa or any treatment helps ease the anxiety. Follow all the suggestions that are posted about Zometa, and be sure to be drinking a lot of water today. I'm having Zometa tomorrow too, so I will send you all my good vibes for an easy infusion. It really goes fast. Just remember 30 min at least for the infusion time. I used to have it in 15 min. and 30 min. has made a world of difference in SE's. So much better.
Mary the Lupin is one of my favorites. I have some that are just beginning to grow.
Lynne, 2 miles is great. I can't quite get past 1.5 a day. My goal is 2 miles by end of May.
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Robbin I made the choice because of the side effects I am hearing of and I am hoping to wait and hear more from the studies. It is strictly my personal choice!
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Thank you Carol and Lynne for your replies. I have sinus inflammations a lot and I also had the CAT and Bone Scans done the day before my blood test for tumour markers. Maybe I still had some contrast die in my system which affected my tumour markers. I also take thyroxine, which I thought may affect the tumour markers as I have a slow thyroid. I also have a benign cyst in my other breast which I have read can make tumour markers rise.
Sarah
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I am getting two MRIs on Sunday, thoracic spine and pelvis. The PET didn't seem to show any holes or loss of bone at the lesion sites but the MRIs will show more...
Edited for spelling: chemo #1 yesterday and my brain is already fried again, I was getting so much better for the few months I was on immunotherapy, but duh, I'm dumb all over again.
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Had a bone scan (which took an hour) and a CT scan (very quick) yesterday. I had 2 injections and drank a clear liquid. Today I have a headache and I feel weird. Is this normal day after scan? I don't remember from the last CT in January. My last bone scan was 1 year ago.
I"m drinking water and trying to pee and poop this junk out!
Dixiebell I am still working full time. If my scans show progression though, I may stop working to spend what time I can with my children, or cut to part time. I would have a lot of thinking to do.
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Christine, Bone Scan does not bother me at all, but I do feel weird from the drinking the contrast for the cat scan. I feel that weird sensation when they do the injection for the cat scan. Like it gets all warm and you feel like you have to urinate.
Good luck with your results, I am praying that you have all great news to share.
Hugs, Carol
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Hi ladies,
Do you mind if I ask this question: How were your bone metastases diagnosed
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Hi DMM- Long time no see
I was 18 years out and had some sciatica going on. They suggested an epidural steroid shot and did an MRI- MRI suggested that I had some weighted signals and because of my history suggested a bone scan. Bone scan showed some abnormal uptake so they did an X-ray and found a lytic lesion in my iliac. Later on in the long process the cat scan confirmed the bone mets.
I switched to new MO- and I am now being followed by bone scans and cat scans. They do not use pet scans where I go. I had mets to my iliac, femur. and thoracic spine. As of end of March all was healing- I go for more scans in a couple of weeks.
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mine were not seen on a CT scan but were obvious on a PET scan one week later (it was already scheduled because I was starting a new treatment). I am having some MRIs this Sunday to get more info. C spine, t spine, pelvis, femurs, scapula and shoulder.
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Purple- Pet scans can have false neg's hoping that is the case for you. Cat Scan/Bone Scan will have more accurate information- I always encourage everyone to get a second opinion from a center that deals just with breast cancer.
Carol
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