Bone Mets Thread
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Bosco, what news out of Chicago at ASCO? In fact, what's ASCO?
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Hi everyone. Just wrote a long post, but now it's gone. Anyway I'm very happy for Linda and Terre and hope Annie had a good day with ds2. My trip was great, but I had some weird symptoms start early in the trip. I keep falling asleep: standing, eating, looking in my handbag. I had a brain mri today. Do my symptoms sound like something caused by brain mets? I also had a couple instances of faulty depth perception. I'll share pictures when I can pick some good ones. I loved the Alaska pictures. Thanks!
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http://www.asco.org/press-center/latest-news-releasesThis is what I found. It discusses breast cancer briefly in paragraph 3.
Jobur, I hope they find and fix the problem. I haven't been using my cane lately thanks to pain meds, but I hate using it. It always creates an imbalance and triggers pain elsewhere (puts a lot of pressure on my shoulder). I'm enjoying my cane free time. Good luck with number 3 - it may just be the right one!
Linda
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Dune, we must have been writing at the same time. Welcome back! We missed you. Good luck with your MRI.Linda
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ASCO is the American Society of Clinical Oncology I think. They have over 30,000 oncology professionals at the annual 5 day meeting which finishes today. My onc says the immunotherapy drugs (not chemo) may not yet be licensed for breast cancer but are applicable across a broad range of cancersl. He thinks the anti PDL1 drugs are "game changers". They supposedly stop the cancer being able to hide from your own immune system He's known about them for a while - told me when he first took over my treatment that he had to keep me alive to 2015 because new drugs were coming. I have triple negative cancer so no other targeted therapies available. I am seeing him tomorrow so may learn more. Have had 4 cycles of Keytruda alongside chemo and the only tumours I have (in lymph nodes) now showed much reduced levels of take-up
Our newspapers are also full of it
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Bear in mind this is a newspaper article but it's from a reasonably serious paper - if the link doesn't work, try googling daily telegraph cure for terminal cancer. It may not be a cure but hope is good
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Welcome back, Dune!
The news out of Chicago is indeed promising - they're saying it will be a game changer for cancer and how it's treated. I read one article where they interviewed one of the docs at the conference and he thinks within five years, it will be cureable. Awesome stuff.
Hugs to all,
Terre
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bosco. I - glad you are out if the hospital. I am going back to read your link. New news is exciting
Terre - 5 years Til curable wow. That's interesting and exciting.
Dune - welcome back. Praying for good news on your brain MRI
Jobur - hoping onco neurology dr can work out your walking issues.
Linda I hear ya in the sleeping from pain meds. For a long time I was either in pain or asleep. Really no middle ground. We have gotten my pain meds in the right doseage and it has helped a lot. It did take a long time to find the right meds and the right doses
Deanna - hey
I had an awesome day with ds2 yesterday. Today I've had ds1 alone all say but not such a great day. Mostly on the couch with a migraine which is much better now. I got my lab results from my thyroid test yesterday. Still off. Dr increased thyroid med. I am actually happy it was still off was beginning to fear progression Whew.
Hugs all around.
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I'm new to this thread. Met with my MO today who said my biopsy confirmed recurrence and bone mets (sternum & spine). Supposed to get call from radiologist tomorrow to get rads started right away. Then going to do chemo pills - Xeloda. Getting spine MRI to have base line for mets there. Anyone else in similar place? Any thoughts of wisdom? Any experience with Xelda???
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Hello Lana, welcome but sorry you have reason to be here. I have mets to sternum and L5, rib and humerus. I had radiation to all mets and it helped reduce the pain significantly as well as my last scan showed the bones healing. I also receive pamidronate infusions every 2 months to strengthen my bones. There is a thread I believe that is all about Xeloda, hopefully you can find some answers there. Wishing you the best with your treatment! Annie
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I am here to report duty, joined several days ago as a member. I am joining out of tremendous respect to all of you who showed courage, strength, and grace in dealing with this terrible disease.
At this moment, my mets are to bone only. So I sense here might be the proper place for me to make my debut. My initial DX was received in 12/2002. I forgot the date. Slightly over 12 years later, more than 3 months ago, I received my stage IV re-diagnose, metastatic BC to both femurs, pelvis, spine, and ribs. If you read my history of DX, you might notice that the subtype of my cancer has changed from TN to ER/PR positive, which is rare but quite welcome. So I am now benefiting from this change. Instead of chemo, I am taking Letrozole daily and Zometa monthly (starting 2/28, around 14 weeks ago). Except the diagnosing CT scan and bone scan, I haven’t done any more scans yet. My onc has a calm attitude. So far he has ordered 3 bloodwork for checking. My CA 15-3 numbers are respectively 269 (the initial baseline), 206 (8 weeks since taking Letrozole), and 150 (11 weeks since). The last bloodwork was done 2 weeks ago. I guess my cancer’s response is rather if not very slow (I saw some achieved NED in 3 months, and some’s TM down from thousands to double digits). Although slow, the seemingly lowering trend allowed my onc to think that we are on the right track for the moment.
I am coming to term about this destiny, simply because I see I really have no other choice. I noticed that when I had to reveal my new diagnose to other doctors I was seeing for other medical issues (my dentist, dermatologist, etc.), they could not help staring at me just a little. Then they all treated me extremely nicely (my dental surgeon laughed when I told him I had to adjust my ambition to live for a hundred years due to this new diagnose, but he held my hand with both his hands to wish me good luck when I was leaving his office). I know that in that moment they sensed the profound dimension of human suffering as medical professionals and as people of kind heart. It warmed me but also saddened me. I haven’t shed tears in front of people. But I let my tears down a little when I am alone.
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Dune, nice pics. I hope you had a nice relaxing time. Welcome back and we sure missed you! Hugs, Annie
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Xavo welcome to the club nobody should be forced to join but here we are and here we find support. I,'ll let the others chip in as I am more of a "lurker" than a poster but I didn't want your post to go unnoticed. Again welcome.
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Xavo, welcome to you as well, and sorry you have to be here but you will find tremendous support and knowledge from all the women here. So sorry that you had to have a recurrence after 13 years but it is a benefit that your hormone receptor status has changed to ER/PR positive. I am currently taking letrozole as well and that little yellow pill packs alot of punch. As long as your tm's are dropping you are heading in the right direction. Adjusting to this diagnosis is not easy, so take all the time you need and if that involves shedding a tear every now and again so be it, we are human after all and this isn't easy. I have days where I have a little breakdown and then say ok that's it, move forward. Wishing you the best with your treatment. Annie
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Welcome to LanaM and Xavo. There is a lot of information among all of us, and many of us have developed close bonds. You will certainly get a lot of support here. There are many different treatments we describe, and that becomes good information to take to your doctor for their consideration. So far they have treated me with anastrazole and Xgeva injections. Now we've added Taxol infusions. I did have radiation to some spots on my pelvis to control pain, and it worked well. I think my doctor needs to consider a new treatment plan, though. I'm not going in the right direction.
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Lana and Xavo, sorry you have to join us but a warm welcome to you both.Lana, I have no experience with Xeloda but as Annie mentioned there is a thread which discusses this med. I also had rads to a few areas (pubic bone, sacrum, iliac and femur). It helped me a lot for pain relief. I have pamidronate infusions monthly. Wishing you the very best with Xeloda. Keep us posted.
Xavo, good news that your tumor markers are going down. I take Letrozole (with minimal side effects) and have been stable since Nov 2013 when I was diagnosed stage 4 from the start. Quite happy with stable. Wishing you the very best with your treatment and keep us posted as well.
It's hard adjusting to this dx and the first few months can be quite rock and roll with tests, doctor's appointments etc. I was in shock until I found this site. So much knowledge, information and support here. It's been a lifeline for me.
Hugs to you both - Linda
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Hi all,
Patty - sorry you had another migrane, but glad you got a good day in with ds2 and that it's a thryoid thing.
Dune - wowsa - great pictures! Welcome back! I've always wanted to do one of the river cruises. Looks magnificent.
Lana and Xavo - welcome to the group. I have bone mets in pelvis, spine, femur, ribs and am on Letrozole and have been stable for 2.5 years now. Last scan said my bones are healing and no signs of active cancer and no new spots. My MO says he just wants to keep me stable until we have a cure, which he thinks is coming soon. Or if not a cure, something that makes this a manageable disease like diabetes. He also says he has no reason to think I won't be here in another 10 or 15 years unless I get hit by a bus or similar. It does take time to wrap your head around it - took me about 8 months to be able to talk about it without crying. And as to NED in three months - yup! That can happen! And there are others who are stable 5+ years out but not classed as "NED". As long as your markers are headed down, it's all good.
Xavo - I'm assuming you know you need all major dental work done before you start on Zometa and that's why the dental visit. I wasn't really aware of what could happen until I developed ONJ. Not a fun thing to have.
Hugs to all,
Terre
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Hi Ladies.. I figured it was time to look up this thread. Was dx originally in 2010, and now have mets to lungs, liver, bones. Its in both hips and spine. I have been doing Falsodex injections since the last progression to liver and bones 3-4 months. However the pain is increasing, and now terrible rib pain. I've been taking T#3 for pain but they kill my stomach so MO ordered something to help with that. However I find if they wear off and they do.. I find the pain is hard to get under control again. My MO told me next would be chemo if these injections fail. My money is on they have failed from day 1. Next CT is next week. Input would be helpful.
Cathy
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Hi tryn2staycalm - sorry you have to join us but you will find lots of helpful information from some truly amazing women here. When I was first diagnosed with extensive bone mets, I was in tremendous pain. I was eventually given oxycontin extended release which I took 2x a day and Percocet for any breakthrough pain. Once I got on the extended release, my pain level improved tremendously and it was well tolerated. Definitely ask your doctor. You don't need to be in pain. It's awful, I know.
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Hi Cathy, Bone mets pain can be awful. I have had rads to several bone mets which helped tremendously for pain relief. I take Hydromorph Contin (extended release Dilaudid every 12 hours) with Tylenol and an anti-inflammatory. I also have Dilaudid for breakthrough pain. And I take a stomach coating (Pantoloc) every day. Pain meds can be trial and error, you have to find what suits you best. Pain mgmt. specialist is also an option. I've learned to stay ahead of the pain instead of chasing it. It makes a world of difference, physically and mentally. Good luck with your scans next week and I hope you get that pain under control. If you take narcotics, you may experience constipation. Be sure to have something like Sennokot and Colass (not sure of spelling). Those narcotics can really do a number on the intestinal transit.Wishing you the very best - Linda
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dune - nice pics. Welcome back. You were missed.
Terre - love your mos thinking 10-15 years!
Lana - xavo - trying to stay calm - Welcome all ! Glad you found us. This bco site has a ton of knowledge. It's great to know others are going thru or have gone thru what we are experiencing. Nothing like first hand experience with a med or teatment. Jump in and post often.
Annie , Linda , Deanna, Hello
Hugs sll around
Today is turning out to be a good day. Temps are rising to 80 today. Maybe I can't stop freezing all the time. I am feeling do much better today. Not sure what me snd ds's will get into today but def something. Think I going to get motivated and make homemade lasagna and peach cobbler dump for supper. Sure am glad to see this thread busy again.
Hugs all around
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Oh Patty, that sounds so good! Dinner at Patty's tonight. Oh we could have such a good time making lasagna. Oh, but maybe another time. This is Patty's special time with her boys. Hope it's great Patty.
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thanks dune. I would LOVE to have you all for dinner. Bring your bathing suits will lounge by the pool after we stuff our bellies. We can stay up sll night talking , and laughing. Oh that sounds great. Feel like I already know so many.
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Oh yes, lasagna sounds great, the pool and great company...Linda
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Thanks to those who replied. I was starting to get a little frustrated with life with cancer mets since the pain started. Seemed like I couldn't do anything without causing the pain to be worse. Sounds like there is help and hope for me yet.Cathy
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If the commute wasn't so long, I'd come for dinner! We're back to the lovely Wellington winter weather we all love to hate - horizontal rain, freezing strong southerly wind, gloom, and fog. Ick. We've had something like a year's worth of rain in 2 months. They're saying June will be better, but so far, you couldn't prove that by me! I'll stop whining.
Have a lovely day!
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Welcome to the new gals -- although it goes without saying, I wish we'd met almost anywhere other than here! It's just such a surreal shock to realize you really do have bone mets, but trust me -- once the pain meds and other meds and/or rads get sorted out and going, it will make a world of difference in how you feel, both physically and emotionally. It's very hard to believe things will ever be better when you're in pain, so finding whatever med or combo of meds resolves that for you should be #1 on your and your onc's list for you. And Xavo, your dental surgeon sounds wonderfully compassionate -- doing just the right thing to let you know he cares. And that really is fascinating that your stats switched from TN to ER+PR+. I'm not sure I've ever heard of a change from (-) to (+); usually it's the other way, or affects Her2, if anything.
Cathy, when I was first dx'd, and until Anastrozole kicked in, I had severe rib pain to the point I could hardly breath at times. In addition to a systemic pain med (and I had to try several to find the one that worked best for me), I was given Lidocaine 5% patches, and they really took the worst edge of the rib pain. If you need something stronger, there are Fentynl (a narco) patches.
Love the photos, Dune! Thanks for letting us cruise down the river with you for a few moments!
Wish I could pop by for some of that lasagne and peach cobbler dump, Patty. But mostly just so happy to hear that you have the energy to do "normal" things again!
Big (((Hugs))) to all ~ Deanna
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In MD Anderson, for annual tests, finished Sprite +barium. Waiting for CT scan. The result will be tomorrow morning when I meet with Onc. The anxiety should not be too long.
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Auroaya, Annie, dunesleeper, Linda,Terre, Patty, Deanna, and all, thank you very much for your warm and kind welcome. I do have found this site and this thread full of inspiration and information. I kind of figured out that after the stage IV diagnose, it is all about gaining as much time as possible, which might well be many many years. I am actually rather used to being unlucky. In fact, I had prepared for the recurrence to come in 3 years after the initial treatments. Well, sort of, I was told the subtype of my cancer (TN) tends to come back in less than 3 years. For years I felt uncertain, but gradually I got used to the idea that I might be lucky this time. Of course that eventually did not happen. My modest goal now is to be like Linda and Terre to have 3 stable years to begin with (am I greedy!). I am quite excited about the emerging immunotherapy, wondering why the common cancers mentioned in the news did not include BC. It is said that immunotherapy tends to be effective with those hard to treat cancers that have more mutations. Anyway, I am amazed that they, the medical professionals, used the term CURE, and in 5 years! My upcoming appointment with my onc is next Tuesday. I will demand that he keep me alive till then, just like Terre’s onc.
Terre, thank you for reminding me of dental work. I did learn a lesson. After my first dose of Zometa, I developed a sore kind thing on my gum. I did not go to the dentist, fearing any delay of my second dose. When the nurse is ready to give me the second dose, I told her I had an aching tooth. She called my onc immediately and they sent me home to clear out the dental problem without giving me the second dose. It turned out that tooth had infection and was pulled. Now I just hope that missing one month’s Zometa would not have very much impact.
Wish everyone a good night!
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