Bone Mets Thread
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Lovelife that is very good news!!! We all love to hear one another's good reports. Happy for you.
Myra! So glad you popped in and touched base with us. How scary for you and your dh. I've missed your posts. Hope the next time you read here, you are back home. Have they started any treatment with you?
Linda, Thanks for sharing your info. We learn something here every day.
Welcome Cita
Dee, This winter has been unusual for sure. Hope you get plowed out. Clyde can't be happy!
Good night to everyone.....
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Hi everyone,
So if I can't go anywhere because of the snow, I've decided to paint our bedroom! LOL! I'm such a glutton for punishment, but it's been a job on my list for a while, so a snow day is as good a day as any to get it done!
But I wanted to share that I got a PM from someone who shall remain nameless, but they thanked me for inspiring them to mention to their DH something that had been on their bucket list. She wrote me such a lovely thank you PM & it made my day. You never know how something you post or PM can change someone's day.
Back to painting!! Cheers, Dee
ps, Clyde is not happy with the weather, but he's snug in his little garage!!
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I kept the news pretry quiet at first, but i told my family members right from the start. I found their support and love consoling. My BFF was a constant source of solace. My DH was freaked out.
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Hi all. I'm dropping by on this thread not for myself, but for my brother who has Stage 4 breast cancer. He was diagnosed stage 4 from the beginning, it was found in a few bone lesions. He had 5 taxol treatments before he had to stop because of stomach issues and bad neuropathy. He just finished a cycle of Gemzar (no carboplatin), and he has a pet scan this Friday. Has anyone here had Gemzar?
I've read this thread a lot but never posted in it. You are all so strong and my heart goes out to you. God bless.
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With all the mixed news, both good and bad, I wanted to share something good. PET/CT today revealed significant reduction or complete elimination of numerous bone mets. Only two smallish areas remain on my spine but the SUV with these has lessened as well, so overall, huge improvement. The radiation and Faslodex apparently have worked well. Although the SE's from rads was tough, fortunately it was worth it. I am so grateful and just needed to share.
Welcome Cita. Myra, so happy you are back but sorry you are in the hospital. I hope you make a quick recovery and get home soon.
Lovingsiliving, I personally have not been on Gemzar but I do know there are others here who have and I believe it's been successful. I hope it is for your brother.
Hello to Dee, Deanna, Caryn, Lindalou, LindaE, KiwiCat and all the lovely other ladies on this thread. I'm sorry I can't address everyone, as when I go searching to update, I lose my post.
I hope you have a great evening.
Amy
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loveoflife. - that's great news ! Please don't feel guilty for good news. We love to hear good news !!!!
Myra. Hope all is well. Check-in when you can
Hugs
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Amy so glad for you. This is what we are looking for. Lovelife good for you.
Lynne how are you?? Where are you guys holding?
Myra, ur situation reminds me of the Hallmark commercial they had during Christmas, the elderly father I think sends unbeknownst to the family a card saying he died, and then all children come to the house, and it turns out it was the only way he got his family there, I AM NOT saying at all, that it's ur situation, but you did get to see Malory.
I am actually in shock and quite sad. Onco called late tonight and he said he spoke with Rad and was told that things are stable. He is not thrilled, he is gonna think over what to change in the tx. Either some immunotherapy, tweak all the stuff she is on now, or Ibrance and...
I was not thrilled, I asked if there is anything more in the testing dept (like blood work or whatever) to get more targeted tx, WHY when she had 2 biopsies done, the tx is not going where it's suppose to get to. THEN, I got the report from my Private Physician, (remember I always tell everyone to send it to their private doc also, if you have a relationship), so I was able to get it in writing. Onco's office will fax it to me TOM, bcs they wanted him to talk to me first. So anyway, I am reading it and it's a mess, basically EVERYTHING is still there, NOTHING got smaller, just stayed. Some places even had a higher uptake even of 1g/ml. like 14.4 from 13. 2, which in itself IS much. THE WHOLE skeleton, the skull, the Cs, all the Ts, the Ls, the sacrum, the pelvis, the ribs, the shoulder area, the face area, even that something in the left quadrant, that they can't identify. AND this is called stable???? I really cannot understand. I gotta read it slowly, if i can manage my nausea. Dani is devastated. She is soooo disappointed. Of course, we understand it could be worse, but after so much.
So many places, it says hypermetabolic, and a lot of osteolytic and erosive hypermetabolic osseous lesions...aghhh ugly ugly words. I gotta read it all.
I am sorry to burden everyone here, but what do I do?? Just wait another 2 months? The markers did not go down, that's something I did not discuss with him. Tom night probably I will be able to spk w him again, by then he will know I have read the manuscript (that is what it is, because it's so many pages), because every area in the body something is showing on the PET/CT. He also mentioned a new drug geared for prostrate cancer, XOFIGO, did you ever hear of it? If she does go on Ibrance, it's already at the center, just waiting to be directed for her, how is everyone managing with SEs? Is it bad? I know many of you are on it, but in lieu of me going back on the thread and look for it, could you please tell me how happy you are with the results. She is ER+PR+HER2+
Thank you so much, hugs to all.
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Can someone please explain what it means to be NED? All I know is it stands for "no evidence of disease". But does that mean the old lesions no longer show up on scans?
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Ok..I will address as many as my memory can hold...:)
Lovingis - welcome to the thread. No experience from me, but I'm sure others will weigh in.
Amy & Loveroflife- hooray!
Dee - what colour? I have 3 bedrooms to paint - one is pale pink (horrible shade of pale pink), one is orange and one is a horrific green.
Jazz - NED means (at least in NZ) - no evidence of active disease. My mets still show up, but they are stable and not active.
Momall - bugger. I am so sorry. I guess stable is better than growing, but still really disappointing. Hoping and praying they find the right combo for Dani. How frustrating and sad they haven't found it yet.
Hope Myra is ok.
Lynne -how's DH?
Everyone else (total cop out here) - sending hugs.
Terre
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Lovingisliving I'm so sorry to hear about your brother. We forget this awful disease can inflict itself on the opposite sex as well. I don't know anything about Gemzar but I'm sure someone will be along with some valuable knowledge for you. I wish you best you have found a good place here.
Myra how are you?
Amy that's great news you have made me very happy with your post😄
Momallthetime I'm sorry it's always a set back when crappy news comes down the pipe. You are and have been so strong . Immunotherapy is where things seem to be moving lately makes sense to me letting the body fight for itself. How is her appetite? Has she been long on this treatment path? I agree those are ugly words this disease is full of them. I find reading those reports always depressing. But there is always hope I have to believe that. You sound like you have some good doctors in your camp it's just a matter of getting the right treatment. Sending hugs sorry I couldn't be more helpful.im still pretty new to all of this.
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Thanks KiwiCatmom!
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Great news, Amy!!! I'm so happy for you!
Lovingisliving, I'm so sorry to hear about your brother's dx. I can't comment on Gemzar, although it seems to be used a lot for liver mets. But since male breast cancer is relatively rare, I do think it's extremely important to seek out a top expert on it, if only for a second opinion. I don't think most oncs have seen many cases of it -- if any.
MomATT, are Dani's scans always done by the same facility and read by the same radiologist? I'm asking b'cuz at first you said things were stable -- which I didn't think sounded too bad since I think her last scan was fairly recently. So I'm wondering if what might sound slightly worse in the current report might be due simply to a different radiologist reading the scans and using slightly different language? As far as Ibrance, I am loving it! It does have some SEs, but you're only on it for 21 days -- then off for at least 7 days, sometimes a few days more if wbc's need to rebound. As far as results, it seems like some women both here on BCO and in a FB group I'm in are getting remarkable results. Of course, some haven't, but that's going to be the case with any tx -- we and our bc's are all so individual and, sadly, nothing works for everyone. But I certainly feel your disappointment and just hope her onc has some more positive news for you when you actually talk to him.
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Hi All!
Amy, so happy to hear of your good news! Congrats.
Lovingisliving, We sometimes forget about the men who have to fight this disease. And if I'm sick of the pink, I can't begin to imagine what they think. I no have experience to offer, but best thoughts on the treatment being kind to his body.
Mom atT, I'm so sorry about this report. Is it possible that it was either read by someone who didn't look at the last reports, or similar to mine, the scans were done too soon? These reports give me a headache & my PCP must go over them with me before I "get" it, so I'm not the best to ask, but here for support for you & Dani. ((hugs))
Terre, The bedroom at the moment is a very light grey, which I like, but it's a small room & needs something so I'm painting the wall behind the bed a dark charcoal colour. I'm going to buy new bedding (ssshhhhh, DH doesn't know yet!) But the first coat looks great, I may paint the whole room that colour. The casings & baseboards are a medium grey colour.
Deanna, thanks for posting about Ibrance, I'm hoping to get in the trial here, it's not approved in Canada yet, but if I need it, I want to have the info to push to get into the trial.
Good night everyone! Cheers, Dee
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good night all.
I am having another sleepless night. Anyone else still up?
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Well, I'm in the UK, so I'm at work now
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what time is it there now ? What kind of work do you do?
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It's quarter to 9. I do document control, so basically glorified clerical.
My resentment towards my workplace has been one of my biggest issues, actually. It's a big multi-national corporation. I worked for a Canadian branch for 9 years until that closed. When we moved to the UK and I started looking for work, I ended up being hired as a contractor for two years before being offered a staff position. After my staff start date, it was just a few months before I was diagnosed. I developed an infection after the biopsy and couldn't wear a brassiere (I'm well into the middle of the alphabet, so going without is not professional!), and I was freaked out, so I ended up taking a week of sick leave.
Then I found out I only had one more week of sick leave entitlement because technically, I hadn't been with the company long enough, despite having been an employee of the corporation for 11 years. I discovered that it was up to their discretion to cover additional sick leave. They chose not to. So I had a quadrectomy with an 8 inch scar, and was back at work in three weeks. The extra time was covered by vacation entitlement. I cried my eyes out when I found out I had to get my spine stabilization and rads, because that was six weeks without income. Thankfully the operation was in the middle of two pay periods, so I had a trickle coming in. Okay, so we managed. Then in January, 5 weeks after my rads, I developed cellulitis and that was another 7 days...at least I had new vacation entitlement, because I didn't get any more sick entitlement until the anniversary of my staff start date.
They do cover hospital appointments (although no appointments outside of the hospital or for blood work) and I thought that was okay. Until I found out that it is the law that they have to!
Well, it's now five after nine... LOL!
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mila. No wonder your frustrated at work. I would be also. I am on disability. Can't imagine how I would make it if I had to work right now. You must be incredibly strong.
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Oh, the work itself isn't too bad, although there have been times...during and after breast radiation was tough. And I'm not always well-groomed, let me tell you! :-D
So what's keeping you up? Just standard middle-of-the-night stuff? I think I've only slept all night once or twice in the last year and a half.
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back pain has me up. It's almost 5am and have alarm set for 6am to get everyone up and out for school and work. Too late to take anything for pain. Can't be sleepy.
What's the weather like there today ? Cold here. The high today is about 40f.
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About the same, maybe a couple of degrees warmer. I find that here, because of the damp, it can feel colder. When I was in Prague, it was a drier cold, more like Canada, and it felt better at a lower temperature.
I've been pretty lucky about pain. I sometimes get movement-oriented pains, but nothing that would keep me awake. Even after my stabilization, I only took Tylenol and only for the first week.
Where are your mets?
(In case you're wondering, I'm having a rare low-work-load day. I plan to enjoy it after the crazy overtime before Christmas)
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Hello to all,
Myra, I hope you can check in soon and let us know how you're doing. Thinking of you and sending love and hugs.
Lovingisliving, sorry to hear about your brother. I know there are a few here on Gemzar, if you use the search engine it will bring up anything related to it. Wishing your brother all the best with his treatment.
Momall, sorry about Dani's scan results but my thoughts are the same, is it the same radiologist interpreting them? After my rads I had a scan which I argued with my onc that I shouldn't have but he insisted. Anyway it came back that I had all this progression. The radiation oncologist emailed my onc and said he was positive it wasn't progression but inflammation from the rads. Turned out he was right, the subsequent scan showed the mets were healing. There's both a science and an art to reading these scans. I'm praying Dani has some encouraging news very soon and that the right treatment is on the horizon.
Amy, I am so happy for you, what awesome news! Do something special to celebrate.
Dee, you rock, can't imagine trying to paint a bedroom. However I did tear down all the Christmas decorations and tree yesterday, 6 hours worth of back breaking fun. Yep I'm a mess today! Ugh I need to simplify!
Hugs to all, Annie
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Good morning all,
Lovelife49 and Amy - Awesome news! So happy for you both! Amy, the Fas and rads sure worked quickly, very encouraging. You both have to celebrate. We need to know about those good results!
Myra - worried about you - in my thoughts and prayers.
Lovingsliving - sorry about your brother and welcome to the thread. I have no experience with Gemzar either but I hope someone will chime in soon. In addition to searching Gemzar, I wonder if starting a new thread for male breast cancer would draw more attention and experiences. Just a thought.
Dee, you call that snowed in? LOL Happy painting!
Mommal - I'm sorry but I also echo what others have said above. TMs are stable, that's good because I think they were always indicative for Dany yes? I know we want improvement but stable is a very good place to be (even with mild differences in SUV) especially so soon after her previous scan. If I recall correctly, this is the first time in a while that she's relatively stable. I can't help but think that Dany is on a good path. If I got all this wrong, please forgive me. I've learned from my scans that nothing is static but that's my personal experience. Continued prayers for you and Dany.
Patty, sorry your back is keeping you awake. Healing bones
remember that!Lynn - where are you? How are you and how is hubby?
Annie - 6 hours? Take it easy. My back is acting up but can't blame it on hard work.
Bosco - are you back home or still on vacation?
OK, I'm sure I'm missing some here but can't go back to other pages. Sending hugs all around.
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Lovingisliving--you might check out the Male Breast Cancer Forum here at https://community.breastcancer.org/forum/51 . I follow the Pinktober Revolution thread here at https://community.breastcancer.org/forum/102/topics/791442?page=96#top and Traveltext is a guy with bc who is active on that thread and with our encouragement started a website about pink washing. He is actively trying to get more support and awareness for male bc. He has a section on male bc at http://pinktobersucks.com/
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Hi ladies,
I had my CAT scan yesterday and the contrast made me feel icky for a few minutes, like a warm, burning feeling on the back of my neck and in my crotch. Luckily it only lasted a few minutes. Apparently, she couldn't get a full picture of my bowels bc the barium drink didn't hit the bottom of my intestines bc I am so constipated lol. That's from all the pain meds. Oh well. Today I have an MRI at 4 pm. I dread that. It hurts my neck to lay there for so long. Pain is almost constant now, I am overdoing the pain meds just to stay comfortable. I left pain management a message to that effect yesterday and I scheduled another pain management appointment for January 25th. I also just finished applying to Little Pink Houses of Hope. Last year, I was an alternate they told me, so maybe this year I will get the trip! They had sent me some stuff in the mail asking for donations, and I got very upset by that, after not being selected for a trip. I told my husband and he made a complaint, and they called me and apologized for that and said I accidentally got on the wrong mailing list. They told me to reapply and hopefully I get selected this year.
LovingisLiving-welcome, I agree with all the previous posters. Also, on FB, there is a man with breast cancer in some of the metastatic breast cancer and breast cancer empowerment groups. I don't remember his name.
Anyone with positive results don't ever be afraid to share, it helps me feel better to hear positive results, it gives me hope.
Dee- wow! I could never paint a bedroom, I am impressed. Could you take a before and after photo, or at least an after photo?
Have a good day everyone!
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Lovingis..- happens to be that Dani is on Gemzar now, he has been in the past also, now they are mixing it with many others. She gets the Neupogen, when WBC is low, (which is always) she does it herself at home, she also has different meds for nausea, steroids so all this could be helping along. it's nice that he has you as support.
Patty hope you could diminish your pain today. Oh, I was so scared that I will be up this night due to the results from D's scans, I swallowed a whole bunch of stuff, to make sure it goes through the night. The horrible feeling of waking up, and then I get these dreaded thoughts, it's too much. As is I am fighting to concentrate. When I do wake up I try TV, i am too tired to type, maybe I will try one day.
Dee - Terre oh I love this convo. I painted some rooms last yr. The girls painted eggplant w some kind of sand color in one room, so the Eggplant was in the main wall, and then the other color on the other 2 walls, and the same for New York State of Mind(gorgeous bluish)and some taupe color for the other walls, and my room is quite large, we went for Dior with a lot of white on the frame. I have 4 large closet mirror doors, so the white balances the dark! Now that was fun. (Benjamin Moore) and we bought like 50 smaller cans to get to this decisions mind you!!
Deanna - Dee- Wendy - Annie thanks guys, but I am looking at the signature and it's the same person, the Medical Director of the place, it's not a big place. Yep, the markers did go up, and they fluctuate, which I have read it's not great if it also fluctuates up.
That's something I have to discuss with Onco tonight, if it's so called stable how are the markers going up? And there is some areas not a lot, that did get more prominent. The Million Dollar question is, he has to decide if to change tx or not. I spoke to the Assistant Medical Director of the RADS place, I told him I wanna come in and see the pictures with him, we set it up for tom. I wanna see with my own eyes. I have the CD but if I am there i could grill him more! He did say it's very extensive bone disease. What else is new?
Annie how is your nasty cold?
Lynne?
Deanna thx for the info on Ibrance, if anyone else has an opinion I am all ears. Thank you so much.
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Hi ladies,
I am new to this group as I was just recently diagnosed with metastases to my bones. I have been reading this thread for a couple of weeks but haven't been able to share my story yet as it has been rather difficult to process. I was first diagnosed with locally advanced breast cancer almost three years ago (May 2013) at 36 years old. I was 9 months post-partum with my first child and noticed a lump while I was nursing. My OB thought it was benign and at the time, I didn't think I had any major risk factors so we didn't do anything. Eight months later the lump was still there, I had enlarged axillary lymph nodes and the diagnosis was made. I also found out I have the BRCA2 deletion. I was on the ISPY-2 trial and received neoadjuvant therapy with taxol, study drug and AC. Bilateral mastectomy, radiation and then was on tamoxifen. When I was first diagnosed, I didn't have any other "symptoms" so I never had any PET scans or really any metastatic work-up. I was on tamoxifen for 2 years, was doing great, ran a marathon and back to work full-time (I'm a physician). I had discussed with my Onc for years whether or not it was safe to try and have another baby or if that was out of the question. Since I was doing so well and we really thought I was cancer free, I had his full support to take a break from tamoxifen and try and conceive. I stopped Tamoxifen in April 2015 and this past Halloween I found out I was pregnant. By Thanksgiving I noticed a dull ache in my lower back and on 12/17 MRI showed mets to L2, L4 and L5 (biopsy confirmed ER+/PR+, Her2 neg). That is when my life fell apart.
Since then, things have been pretty terrible although every now and then I have a glimmer of hope. My oncologist, who I call the "cancer whisperer", is so optimistic and thinks we can control this through the pregnancy and for years to come. The problem is the waiting. I am now just starting my second trimester and they (onc and MFM) are trying to figure out the best treatment to use for the pregnancy (I can't get adriamycin again due to dose limits and a lot of the oral anti-estrogen are contraindicated during pregnancy). I had more imaging last night and it looks like there are more spots in my thoracic spine (T3 and T9) and maybe my left femur. I am still very hopeful but the waiting to start treatment is very hard. Today I am having a particularly bad day and thought it was time to join the group and maybe get support from those of you that are living the hope that I so desperately need right now.
Thanks,
Annie
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Hi Annie, I just want to hug you. I'm so sorry you find yourself here. This is a great group of women and you will find a lot of support and information that will hopefully ease some of your fears. You will feel better once you start a treatment plan. That was the hardest part for me, waiting until I started treatment. It took a month for me to get a treatment plan. Hardest month ever. I've read of other women that were pregnant and having a bridge dose of chemo. You might want to try a search. I'm glad you decided to post. Let us what you need so we can support you.
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Annie: I'm glad you posted. This group of women is tremendously supportive. Do you have family or other help near you? I want to jump on a plane and hug you, too!I think what has surprised me most since diagnosis is the normal lives many women with metastatic disease to bone are living. The first weeks are so scary and then you adjust a little bit. Where are you being treated?
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Hi, Annie ~ and welcome... although I'm so sorry you have reason to be here, as well as dealing with a mets dx while you are expecting. I'm glad to see you have a MFM center wherever you are and those docs on your medical team. An early stage dx concurrent with a pregnancy probably isn't all that uncommon, but as long as I've been on BCO, I'm not sure I remember anyone else in your situation, although I didn't follow the Stage IV forum until my own re-dx in 2014, so there certainly may be others here. If I was in your situation -- and when you feel up to it -- I think I would start a thread to see if you can turn up any first hand experiences. I love the fact that you have an optimistic onc, which probably says a lot about his confidence and ability. Plus, being an MD yourself is surely a benefit in terms of his attention to your case. So at least you have that area well covered!
You mentioned not being able to do Adriamycin again. Have either you or your onc researched other possible options? I'm thinking maybe something like Abraxane, although I haven't looked it up, but would be happy to if you need some research backup. I'm also seeing my UCLA onc on Monday, and could ask her if she's treated anyone in your situation, or is aware of anyone highly specialized in it. Just a thought... (((Hugs))) Deanna
PS ~ Here's something you may have already pulled up -- from the information side of BCO. If you haven't, I thought it might be helpful. http://www.breastcancer.org/research-news/20120821... (And it looks like the Taxanes are a no-no, but other options may be okay.)
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