Bone Mets Thread
Comments
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good morning friends
Lindae - love you Pic. So pretty
I got home from the hospital yesterday . feeling much better just weak. My back pain is back with a vengeance. Just from laying in a uncomfy hospital bed so long. Will get better now I am home
Thanks for the all of the support. It really helps.
Too lazy to post individually but know I am thinking of each of you
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Great news, Patty! Glad you're home. Any further update on what your onc is thinking about your tx?
Linda, you've been dealing with those for awhile, haven't you? Hope an antibiotic will quickly knock out whatever is causing them. And I also love your new avatar! Very pretty!
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Linda,
I once had a boil on the back near my shoulder blade. It was horribly infected and needed to be lanced and drained. No pretty at all, but that and a course of anti-biotics took care of it. Hope your's are resolved soon.0 -
Nope the pet machine was down and I didn't want to stay another night at hospital just to do it. So they will schedule it and let me know. I already have an appt with mo Aug 5. So I guess we will discuss the results and tx change then. I really don't want a change but I guess nobody does
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Patty so so happy YOU ARE HOME!!! About change, sometimes it's better. Could I ask you about doing biopsy to see if any status changed? It's bcs for my daughter she's been tryg so many diff tx and then progression was so aggressive, finally Onco after we asked so many times did the bone biopsy and voila! Change in Her2 status, so more targeted tx was able to be given. As you know from this thread wasn't great but it halted IT some, and tom she is changing to Kadcyla. Best of luck, wish your back pain subsides.
Karz72 I went to Youtube and heard the words - New Republic - I lived. Wow!! so powerful. A good cry. Thx for sharing. your mom is lucky you guys have this connection. I feel blessed too.
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Patty - Home sweet home! Let your hubby and whoever else volunteers to spoil you! Nothing like our own bed.
Deanna - It started with one boil, then two and now a third one is on its way. I think it goes back to Dec 2014 because I saw my GP in Jan of this year and mentioned it to him. Anyway, went to the dentist this pm and she gave me Clindamycin (antibiotic). Not the type of Doctor for that but she knows me very well, knows all my history and meds. I'm starting today - and it's in the groin area of course... I don't like the idea of taking antibiotics but I think it's time. These awful things pop up about twice a month.
Thank you re my avatar. Thought it was time to show my face around here...
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lindaE. - very glad you felt comfortable enough to share your face with us.
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Hello to everyone, sorry I'm a little behind, been dealing with some family issues and that has been my main focus. Haven't been feeling the greatest on top of that.
Patty, so happy to hear you're home. Praying for continued improvement in how you're feeling.
Linda, sorry about the boils, I have no advice but I know they can be a nuisance. Hoping you find a treatment that takes care of them. I absolutely love your new picture and love your hair! You look awesome!
Momallthetime, sending positive thoughts and energy to you and Dani. I pray for things to turn around for her with her new treatment.
Hope everyone else is feeling well. Myra haven't seen you in a while. Terre how are things going?
Deanna, Caryn, Xavo, hello.
Hugs to everyone, sorry I can't address everyone individually but I'm just so tired.
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Thank you Annie. Sorry you're not feeling the greatest. Hoping for better days soon.
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Does anyone know if external beam radiation to the breast can damage the thyroid or pituitary gland? I had 24 rads and 12 boosts and before the first, I asked if they were able to cover my throat/thyroid and the tech looked at me like he had never heard of such a thing. Now, 8 months later, both my TSH and Free T4's are low. I am scheduling an appointment but just wondering if anyone else had something similar happen.
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Blownaway......I've had a lot of rads to my upper ribs in two separate treatment cycles and my thyroid is acting up as well. I have a hoarse voice and now I have a nodule on my thyroid that is being followed up with a CT in a week. I don't know much more yet, but see an endocrinologist in about 2 weeks. Are you seeing an endocrinologist as well?
You will all appreciate this....my husband just passed his one year mark of prostate cancer and I'm coming up on a mets one. Decided to get away for a night. Got to the hotel and the mattress was too soft for my back ( lots of mets, surgery, etc) and we couldn't stay. Way too painful. However we were on Lake Michigan and the view was soooo beautiful. Thought I'd share....
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Annieoakley,
Thanks for saying hello.
Take care,
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Hello everyone,
Dune, thinking of you, I hope you're feeling well. Miss you!
Dee, also wondering how you're doing and always thinking of you.
Lindalou, beautiful picture, thanks for sharing! Congrats to your husband passing his one year mark. Are you coming up on 6 years in August?
Linda, thank you for your well wishes, I'm a little better this evening but didn't do a darn thing all day but put my feet up. It was gorgeous here today, a perfect weather day.
Hugs to all, Annie
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What a beautiful photo, Linda. That water looks heavenly. And bummer about the hotel bed. That's one reason I'm a huge fan of Tripadvisor reviews. After a few disappointing beds -- even before mbc -- any mention of beds being less than comfortable immediately rules out a property for me. I hope you were able to get your money back.
Blownaway, I think it varies greatly from patient to patient, rad onc to rad onc, and facility to facility, but I'm sure damage can and does happen. OTOH, fully recovering from chemo and rads can take many months or more, so hopefully whatever is going on will improve as your body continues to heal.
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Patty, so happy you are home. On treatment, since Femara worked for so long, adding Ibrance could extend its effectiveness. Even switching to Ibrance and Faslodex could be another very doable option. Ibrance was not too hard. Low blood counts is the hallmark, so fatigue sets in quickly. Faslodex seems to be very easy. Soooo, I wouldn't worry too much about a new treatment, there really are some great options for you! I'm happy to discuss any of them with you, just let me know.
My intense pain flare on Sunday and Monday has subsided, now just the daily pain that I always have. Today I was achey from head to toes and seem to be feverish tonight. I've had this off and on and it's usually gone by morning.
New pain meds starting tonight. MS Contin at night and Percocet during the day. When she explained that I'd be able to wake up without as much pain, my eyes welled up. Just to wake up and feel at peace is such a wonderful idea. I hope it works!
Brain MRI showed no mets in brain, yay! However, my entire skull and all the marrow is infiltrated with tumors. Direct extension scares the crap out of me, if I'm honest! My scalp has been sore for a few months and this tells us why. Somehow, though my neck and the hard nodes were not included here, so I need to get that checked.
She wants me to nix AR treatment and even combining Tomoxifen with Ibrance or something else. She says I need chemo now. The bulk of the tumors is too much and moving too fast. I'm very disappointed as I don't want to do chemo. However, I'm a bit afraid that if I don't, things will start happening pretty fast. So, port and Gemzar. Anyone on that? Did it work? Side effects? It will be a weekly infusion.
My liver numbers are up too. We didn't do an MRI of the liver. It wouldn't be surprising if something is going on there. Not sure I'm up for scan number 6 in less than 2 weeks, though. Think I will wait and see if they are still off next month.
Ok, that went on for a bit. Feeling a bit defeated today. Need to just get a plan and move forward so I can keep living this life I still have. I have tickets to Imagine Dragons in LA on Friday night. It's my youngest sons favorite band and he is beyond excited. I'm a little afraid of how I will feel, but I know I can get through it for him. He's 11 and deserves so much more than he's been dealt. All he can remember is that his mom is sick and has cancer. He was 6 and had just started first grade when this all started. Wish he didn't have to handle all this at such a young age. Dam cancer!!
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lindalou - congrats !!! Thanks for sharing your pic. Looks beautiful and incredibly romantic. Bummer about the bed.
Hope - so sorry. I'll agree, damn cancer and its effects on our children esp. Never heard of the band but super excited you and ds get to go to the concert. Just you two going
or dh as well? YEA! No brain cancer ! Now that's worth celebrating. But the other results just suck. Do you already have an appt for your port ? Have you had 1 before? No experience with gezmar but hopefully someone will come along soon. Also glad your pain had decreased. Thanks for the offer of discussing new tx with me. As soon as I know what the plan is I'll def be asking you. So impressed with your fighting attitude. Keep it up. Thinking of you.Deanna - what's going on with you ? Still waiting on scans ? Weren't you also changing tx ?
Rose - if you are lurking - I miss you. Hope you will stop by and say hi soon.
I am doing better. Stayed awake all day and not from fear or pain. Both my boys hung with me all day. Lots of snuggling and talking. Just watched TV and hung out but it was Excellent! Wish I could make days like these last forever.
Hugs all around. Night night by dear sweet friends
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Patty enjoy the little ones!
Hope, my daughter's MRI also did not show the neck. She also is feeling the lesions in her scalp, it seems they get concerned when it really hurts or if there are serious SE. She had Gamma to the area, bcs her vision was blurry. And it showed (i don't have the wording now) lesions in the sphenoid area. It was very precise, they had to measure her face etc..it took quite awhile to set it up, a separate visit just for that but was worth it.
Also, re liver - they could do a CT scan(yes it's a lot of radiation)that's what they used to dx stuff in the liver, but if it's really elevated maybe necessary or a Pet-Ct when was the last time you had that done? She was on Gemzar for a short time.
I am still looking for info on Kadcyla on it's own or with Perjeta. If anyone knows...
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Romansma, so glad your intense pain subsided but yes the daily pain is no picnic. I hope your new med combo works at allowing you to wake up without as much pain. For me it's a constant reminder that something isn't right in my body and I hate that. Yay to no brain mets but sorry to hear of the other stuff, praying your next treatment is the one that kicks cancer's a**. You're always such an inspiration to everyone on these boards and it saddens me that you're feeling defeated right now but I'm sending positive thoughts and energy for things to get better. Enjoy the concert on Friday night and I'm praying you feel well for it. My youngest daughter had a breakdown last night about my cancer, broke my heart into pieces, she said she feels so sad and wants to have fun and enjoy herself but is always thinking of me and feeling she should be spending time with me instead. I told her she needs to live her life and to enjoy every minute of it. I hate what this does to our children!!!
Patty, sounds like you and the boys had a nice day, I hope you're feeling much better.
Dune, it's been a few days, thinking of you and hoping your cold is better.
Hugs to all, Annie
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Good morning all,
I don't have much time because of Onc appt this morning.
Romansma - I could not leave the house this am without responding to your post. I don't know what else I could add that's already been said above. Know I'm holding your hand in spirit and praying for the next tx to be THE one.
Hugs all around.
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Patty - glad you're home & hope you're feeling 100% again soon
Linda - you've inspired me to update my avatar too :-) I'm looking forward to when I can update to one with my new "pixie cut" hair - need a few more centimetres of growth first though!
Annie - sending strength. We don't need added worries. I hope your daughter is feeling a little better about things too. My heart breaks for you & her as it does for my little one. Sometimes words aren't enough so I'm sure you're getting & giving a lot of hugs & cuddles.
Lindalou - sorry your night away didn't work out, but now you have good reason to celebrate your 1 year with another trip.
Hope - sending positive vibes & virtual hugs your way too. Is the pain getting more manageable?
wishing a good day to each & every one of my bone mets friends
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Good morning everyone!! I thought I should check in, I've been trying to stay away from here, give myself a bit of a break from all this.
I finally have my appt with RO this morning, but it's a telehealth, not in person. But I will finally find out the results of my MRI and what the plan is for rads to my spine & ribs.
Then we're heading for Vancouver for a week. My friend who has colon cancer is out of treatment options, so we want to go over & have some fun, go out & see a few things with her before she can't. She already is completely exhausted by 4pm, so dinner is out, but we're hoping to take her to some of her favourite places.
Take care all of you, I skimmed the thread, I'm glad that Patty is out of hospital, I hope Dune is ok, Linda, good luck this morning & love the pic! Annie, hugs, Romansma, I hope you're able to figure out the pain & get it managed. Deanna, Caryn, lindalou & everyone else that I've missed, I hope you have a painfree week.
Cheers, Dee
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Thank you for all of your support. It really does mean a lot to me. I know you all know how this feels.
Annie, sorry about your daughter. This issues surrounding our kids are the hardest for me. It feels like a dagger to my heart when I think about what this is doing to them.
Momallthetime, thanks for explaining the gamma knife. I didn't realize it was used for stuff like this. Makes me feel better that there's another tool if the chemo doesn't kick it back fast enough. On the subject of scans, PET scans don't give us a realistic idea of what is going on for me and the Lobular subtype. It just doesn't show much of what is happening. So, I rely on MRIs mostly, but we will be using CT for liver and lungs in the future.
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Hi all,
Kartz, - nice avatar!
I am at a loss for words for those of you who have children. I admire your strenght and how you deal with this.
Dee - good to hear from. I'm sure your friend appreciates the time you spend together.
Warning: This may a long post, but please bear with me.
Went to my Onc today, blood work is excellent. She ordered a brain scan and if something shows up, an MRI will be requested. Last I saw her, end of May, she gave me verbal results of the CT scan as the written report wasn't ready. All was stable. Now today, I asked her for a copy of the report which I read after my appt. WTH? Dee - this will sound familiar. It says the very small blastic lesions in the cervical region are stable. First I hear about mets in the cervical region. I'm not at home for a few days, but will look at prior reports - although I know this was never mentioned.
Then we discussed the tx plan strategy when progression appears. This may be of particular interest to Canadian members bearing in mind the info I have is for Quebec and may be different for other provinces. I welcome any input from Canadians and other countries. After Femara, she suggests using Aromasin alone as Affinitor has serious SEs and not so good results, in her experience. I agree I don't want Affinitor and told her QOL was more important to me than overall survival. After Aromasin, it would be Falsodex with Ibrance. Seeing that Ibrance is not approved in Canada and we don't know when it will be, it may not be in the scheme of things for me. So Falsodex alone it would be. So I questioned the Aromasin alone seeing that it is the family of Femara. Her answer was that our govt socialized health system will not pay for Falsodex if Aromasin is not done first, and that there would likely be progression on Aromasin faster than on Femara. If I choose the A/A combo as next tx, I would not qualify for Ibrance later (long shot because it can be years before Ibrance is approved in Canada). We went even further discussing chemo. Depending on progression or tumour load or organ involvment, chemo would be considered before continuing HT. But, our govnt health system has a protocol in place, which is not based on individual care. For example, depending on progression, if Oncs or Tumour Committee think that Chemo X which is No. 5 on the protocol is better than other chemos, Chemo X can be given, but beware, I would not be entitled to chemo 1 to 4, ie. not paid for. I am quite disturbed by all this. I will check with my ex-employer's insurance as a retired employee, but it's usually a carbon copy of the govmt system. I hope all this was not too complicated.
Oh, and on my way to the hospital, was stopped by the cops. I missed a stop! Was lucky to not have an accident or hurt someone. $162.00 down the drain. Oh well, it was my fault.
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Dee, so nice to hear from you. I hope you have your MRI results and a plan in place for rads to your spine and ribs. So sorry to hear about your friend, I hope you enjoy your time together and going to some of her favorite places.
Karz and Romansma, thank you for your kind words, our children are our world and this sure takes a toll on them.
Linda, wow you had a good appointment and got a lot of information! Good news on your blood work, very happy for you, not so happy about your ticket. So what did your onc say when you were surprised about the mention of cervical lesions? Yep I've been there, previous onc missed telling me about a large lesion in my humerus, even after I complained of arm pain, ugh it's infuriating.
Hugs to all, Annie
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Annie, absolutely the hardest thing for a mom to see. Their innocence it's NOT fair. Even looking at my grown children having to accept the sibling situation it's hard for me to cope with. But, the silver lining is that she actually cried and told you how she feels, some children act up and one cannot even reach them, so it may have turned out to be a blessing. It's good for her too, instead of having tears bottled up. You know what you are fighting for. Hugs
LindaE - where to start, we so understand where you are at. These faceless bureaucrats deciding YOUR life. Statistically how much is your life worth. Hmm, I wish we could ask this right back at them. All of a sudden when the gun is facing them I am sure they would have a different song.
We are not faring so far removed in the States with Obamacare, yes, sure you could have scans, in 2017!, (ok some exaggeration but close) or your doc, sure, BUT he won't accept YOU bcs he is ONLY taking patients paying out of pocket. But if you show these pencil pushers they can't tire you out, it may help. WIsh you best of luck.
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Momallthetime, we were posting at the same time. I can't imagine how hard it is on you watching your daughter go through this and worrying about how it affects her siblings as well. I often wish I had my mom to help me but she passed away the month before I was diagnosed with breast cancer, some days I just want my mommy. And I know as my dd was crying her heart out last night she's thinking the same thing, fearing life without me. We're so close it makes it so hard and she just kept squeezing me and hugging me and telling me how much she loves me and how upset she is this happened to me. I tried to stay strong through all of it and console her but when I got to bed I fell apart. I know she needed to open up and let it all out and I'm glad she did but boy did my heart ache. I can only imagine for you it has to be so hard to see Dani going through this but she is blessed to have such a dedicated and caring mother looking out for her best interests. I wish there could be a world without cancer. ((((Hugs)))) Annie
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Hi everyone!
Linda, sounds very similar. I got the same story today when I talked with the rads onc, she told my that the MRI showed new tumours on my rib & tailbone. Well that's odd because those are the two places that I have been complaining about pain for 2 years now & they kept telling me there was nothing there! WTH??? I had the same conversation that you did about the next treatment phase & that's the reason I asked for rads. I don't want to go onto A/A & as you said Ibrance isn't approved here. I am hoping that things will change in the next while before I need a treatment change, you too.
Thanks Annie. I feel the same about my mom, just when I was diagnosed she was told she had alzheimers & she went downhill very quickly. I didn't tell her about my BC, but there were days when I cried because you just need to talk to your mom, so I totally get it.
I will be booked for rads in early August. They wanted to do it next week, but I'm going to Vancouver tomorrow to cat sit for my friends daughter & didn't want to back out unless I absolutely had to. DH is taking me & we're planning to go to Whistler for the day, out to Steveston & do some touristy things & visit friends. I'll try to remember to take some pics with my nifty new iPad!
I will be spending time with my sick friend, she is losing all hope, I suspect this will be a difficult trip for me & hope it's not the last, but in the back of your mind you know you have to be realistic. 
Take care my friends, see you in a week.
Cheers, Dee
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Mommallthetime - Yes, faceless bureaucrats. Funny, BF said this morning, "but Linda, they can't just be bureaucrats elaborating those protocols". I'm not convinced.
Annie - Yes, now I remember about your humerus! I haven't spoken to my Onc about it because I read the report in the car. I will compare with previous ones when I get home next week. And I don't plan on bringing this up until my next visit in Oct. I'm just too fed up of this s*t, I don't want it to disrupt my summer. I am absorbing one thing at a time and trying (yes trying) to not project myself too far in the future. Annie - sorry for what you're going through - wish I had some words of wisdom - but know you and daughter are in my thoughts and prayers.
Dee - You are a very special friend. Isn't it incredible that we have to find other ways because meds are not available or because of insurance protocol? UGH Hopefully, things will change. I was surprised when my Onc mentioned Ibrance and had a second of glimmer of hope, and asked if she knew when it will be approved. She doesn't. I mentioned to her that Femara was only approved in Canada in 2006, years after the US. She wasn't aware, but she graduated that year. And I believe 2006 was when the generic came out. I contacted Health Canada - they told me to contact the pharmaceutical Co. Yeah, right!
Dune - you haven't checked in. I hope you're doing OK.
I am sorry for the negativity in my posts, but sure you will all understand.
A nice and pain free or less pain to all. Hugs all around.
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Hi to all! I have been away for a few days and had poor internet access. I have a lot of catching up to do! Quick question, my onc has ordered a ct scan of chest, pelvis and abdomen and I am having it done tomorrow. This is the first "check" on things since my bone mets were diagnosed via pet scan and bone scan in April. Should I be asking for a repeat bone scan as well? My onc seems to think that the ct will show her improvement or progression in my bones. True ? Opinions appreciated
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I was out of town yesterday (working on my antique spaces), and am once again overwhelmed at trying to catch up here. But I'm easily overwhelmed these days -- both physically (like from yesterday) and mentally -- so will power through responding and hope I don't miss anyone.
First, Romansma, are you still working on a second opinion? If so, I'm wondering why you wouldn't try to get that first, before starting a new chemo? I mean, isn't that the point of a second opinion -- to be sure you're moving forward in the best direction? Also, you mentioned not knowing about some type of tx, and that reminded me of the list Bestbird has put together, explaining just about every option there is out there for us. If you or anyone else wants a copy, just PM her. I think she recently reported already distributing 500+ copies. It's really a fabulous resource! And lastly, I hope the new pain meds are agreeing with you and helping a lot. Keep us posted!
Linda, YAY for no brain mets!!! And, sadly, I think bean counters (vs. doctors) are the ones coming up with many of these ridiculous rules. Whether it's Canadian bureaucrats or US insurance companies, the bottom line more and more is profits over people. Totally disgusting.
Dee, I've never heard of a telehealth appointment and am wondering if those are unique to the Canadian healthcare system? And so sorry about your friend with colon cancer. It's such a devastating thing to go through. I'm glad you're going to see her. Oh, and that ticket! Ouch! Did you play the cancer card? I sort of regretted not doing that after my costly ticket a few months ago, but I certainly have slowed down since then! And boo to finding things we don't already know about in a scan report. Gosh, it just makes you really afraid to even read those, although we certainly need to know. Enjoy Vancouver & Whistler! I've always wanted to go to the latter. Pictures of it are so beautiful.
Karz, love the new avatar! You look great!
Romansma, hope you and your son enjoy the concert tonight. That was one of my son's favorite groups when he was younger, and I like them too.
Oh, one last thought on children... Has anyone looked into a support group for them? I know we all want to control how our families get information about our mbc, but I'm also thinking how invaluable the support we have here is -- and for that matter, any support -- whether it's the challenges of raising teens or laughing with our gfs about our hubbies. There's nothing like realizing you're not alone in any of life's challenges, and I can't help but feel that some kind of group support might be helpful. Just an idea...
Patty, Dune, how are you doing? (And my apologies if I'm for the moment missing anyone who is struggling.)
Hugs & happy weekend to all! Deanna
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