Bone Mets Thread
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Hi guys, I have been MIA for a week. Grand daughter is absolutely gorgeous. Good set of lungs though! Will post a picture if they transferred correctly from my phone.
Annie, Congratulations on all the wonderful celebrations you have been having. Your family is gorgeous!
Terre, astronomy camp? How cool! Did you see the meteor shower?
Patty, so sorry about your progression and huge surgery. Hope you are on the mend.
Linda, great scan news! Keep up the good work!
Leah, thank you for the kind mazel.
I am so sorry to those I have missed, my head is still spinning with joy and love. My baby had a baby!
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I am not usually on this thread very much but I am so glad that I stopped in today to scan through what is going on.
Annie, What a wonderful surprise for your birthday!!! Happy Belated Birthday and Happy Anniversary!!!
Myra, Congratulations on the little one, what a beautiful baby!!!
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What a wonderful baby girl, Myra the grandma!
Hi, everyone, went to Dana Farber for a second opinion yesterday. Saw a wonderful doctor who first of all confirmed that I am doing well and the treatment I am getting is sufficientt, which were my two major concerns due to that the recent scans lacked the value of showing my current state in comparison with my previous scans, and that my fractured T9 is basically left to heal on its own. I am very glad to be assured that this wonderful doctor will be available whenever I need to see him again. The meeting lasted for a full hour. Not a lot new information though. (The doctor joked that I had read too much, which probably actually means that I have read some but without the proper training to understand well.) But I think the doctor's opinion of my T9 issue could be a reference for our bone mets sisters. He said my T9, the thoracic MRI I had last week showed the T9 is deformed retropulsionally (instead of hunching forwardly, my back has bent backwardly a bid) but the current fracture is mild, can't be corrected although the procedures can stabilize it in its current shape. However, if the symptom is mild which suggests the cancer be not aggressive, wait to see is better than rushing to treatments that always have risks. As for radiation, the doctor's opinion is again, if the symptom is mild, radiation to the bones should be on hold for although it can kill the cancer cells if not all, it has the potential to harm the marrows which are essential for receiving the chemos. Note the context of the doctor's point on radiation here is that my bone mets is extensive. Limited bone mets might well be a different story. End of update.
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myra. - congrats. ! How very exciting ! Nothing like a baby's love to bring us incredible happiness.
Annie. - love the pics ! What an awesome family you have. You are so loved. Very happy for you. You look great !
You guys are scaring me with the face hair talk. Fixin to get off here and go inspect my face in the mirror. Scary
Like someone else said, I read often whats going on with you all but have felt so miserable that i usually feel too exhausted to post. Wish I could respond to each. Was starting to recover from surgery but then yesterday I had to go to mo office to start Falsodex shots ( tomorrow I start Ibrance) and all the walking has got me flat and miserable again.
Deanna and cjanet ( hope thats rigt ). - looks like we are all starting the Falsodex and Ibrance combo at the same time. I am hopeful it will stop this damn growing cancer in its tracks. My mo had me stop femara the day I started Falsodex but I ave read often on Ibrance or Falsodex threads that there should be a "washing out " period from the old tx. What were you told ?
Hugs all around
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Xavo, seems like you got some great answers to your questions! I wish all doctors would just learn to listen to our questions and answer them in a way that we can understand. I often wondered why my onc never even mentioned radiation to me...now I know and understand. Patty, glad to have you and all the ladies on the Ibrance thread! I have had a great response so far, tumor markers 203 when just starting in April, now 64. Just started cycle 5
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Deanna, PattyPeppermint and anyone else starting Ibrance/Faslodex. I was in the Phase 3 study for 19 months before I had progression. It stopped the cancer from growing and the side effects for me were minimal. My WBC counts were always very low but during that time I never got sick. I was never extra careful about where I went and was exposed many times to flu and colds! The only negative (which I think was due to Arimidex) was a fractured heel. Towards the end I started getting severe neck pain, which I still suffer from, not sure if that's related. Check out the Faslodex thread - there are many helpful hints that will help the injections be less painful! One important one that comes to mind is insisting that they warm up the faslodex (its kept in the frig) to at least room temp and the injection should be done slowly! Looking forward to hearing good results from everyone! Susan
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Patty I actually had no time between my Arimidex and Faslodex. I think I even was still taking Arimidex after I got the Faslodex shot as I hadn't started Ibrance yet. I basically finished the bottle.
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patty and others starting Ibrance good luck and let us know how it goes. It seems so optimistic.
I have a question for the group. Do AIs (I am on extemestane). cause or increase migrains. I am muddling through another one today and they seem to be double what they were.
Thanks in advance for any input.
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3-16-2011, Sorry you have migraines....I have them all the time too. Bad on AI's and worse on Faslodex. A few of the meds I've tried are, Imitrex, Relpax, and Maxalt. Imitrex ( injections or pill) has worked the best for me. Excedrin Migraine will only worsen the migraine my doc told me and she was right. Of course keep away from triggers, like cheese, soda, chocolate, etc. I've found the key is to take something as soon as you feel it ramp up. I sometimes wait and then I can't catch it and it goes for days and days. A neurologist I saw told me that it is due to the dropping of my estrogen levels. It can be hard not to fall into rebound migraine. It can be a tricky game, but you will find what works best for you. Maxalt comes in a oral disintegrating tablet which is great if you are nauseated. Dark quiet room but you probably already know that. If you have Zofran for anti nausea, taking that with a RX migraine med can offer quicker relief. Hope you find relief.
Good Luck to all starting Fasloex and Ibrance.
Deanna, keep us posted on your dental visit. I may be heading down that path soon.
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wow lots of the exciting talk about Ibrance.
3-16. I haven't heard anything about the migraine se but each of us respond so differently to meds. Hope they go away soon. Migraines suck.
Hugs all sround
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I'm going to apologize upfront for answering Lindalou's question, without having taken the time to get caught up on what I missed yesterday while I was at UCLA. But it's been a busy day for me, and I'm not feeling that great, so having a hard time getting things done.
Anyway... as I must have shared earlier, I've been hemming and hawing about getting on Xgeva due to ongoing dental concerns, and I didn't feel my dentist understood the urgency of the situation, nor did I trust his overly casual okay to move ahead with it. So my UCLA onc had suggested sending me to someone @ the UCLA School of Dentistry for an evaluation, which is where I was yesterday. So I went in expecting maybe a 30 min. consultation, and we were there for 2 hrs. First, I was sent to dental radiology for an "onj evaluation," which included an x-ray and a CT of my jaw. I must admit I almost panicked when they told me they were going to do a CT, but it turned out to be a quick and easy procedure w/out any contrast. Then I met with the dentist -- a DDS, MD, PhD with a special interest in bone strengthening drugs -- who took my whole history, asked excellent, caring questions, and took photos of my teeth. She also totally explained about ONJ, and even showed us photos of actual ONJ cases (no faces, just pictures of dead bone). No conclusion until she reviews the CT, but I was very impressed with the appt, and she certainly validated my concerns. So all in all, I left feeling very reassured and once again incredibly impressed with not only the caliber of docs at UCLA and their specific expertise when you need it, but also their wonderful, caring and down-to-earth manner.
Annie and Myra, I love your beautiful photos! Annie, how special that your girls planned an anniversary party for you! And Myra, Mallory is absolutely precious! You must be so happy and pinching yourself that she's here!
Promise I will get caught up and write more later... Deanna
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deanna - sorry your not feeling all that great. Little jealous I am not closer to UCLA. Sounds awesome. Glad they addressed youronj concerns and hope the answer soon will be negative.
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Hi all,
Myra and Annie - Your pics are beautiful!
Patty, Deanna and Cristina - wishing you the best on your new tx!
Hindfeet and Lea - so good to hear from both of you.
Xavo - that's excellent news. Glad you got answers.
Dune - I hope you're OK? Haven't seen you in a while.
3-16-2011 - Oh those migraines suck! The frequency of my migraines was much worse when I was on certain meds, namely Tamoxifen and Lyrica. Some meds can trigger them.
I had a call from my nurse navigator today regarding my surprise mets. My Onc said they were already there and are stable and not to worry. Nurse didn't have more info. Soooo, I will worry when need be. My next CT and bone scans are mid September. Should know more then.
Sending hugs to all
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Just read the 2 or so pages I missed, and first... Leah, I'm so sorry you've been so exhausted, but it was really good to hear from you, and I'm praying your new chemo works far better than the previous one.
Annie, how special to reconnect with a friend you haven't seen in 20 years! I hope you'll post a photo for us!
Xavo, so glad you made it to DF, and very happy to hear the onc you saw there wasn't the list bit critical of the care you've been getting. It sounds like he was much better at explaining things than your current onc, so that's something positive!
Yay that you're starting Faslodex & Ibrance, too, Patty! I am believing Ibrance is a wonder drug and praying we all have TMs that take the same dive Lynwood's have!
3-16-2011 and Lindalou, migraines are the worst. I'm so sorry you're both dealing with those. If it's the extemestane, 3-16-2011, (and Lindalou's explanation re. dropping estrogen levels certainly would point to that), I hope maybe you will build up some sort of tolerance, especially if your estrogen levels even out at some point. But, oh, I would hate to even pop one more pill if I was in your situation, knowing it could bring one on.
Linda, glad to know those surprise mets are stable. Sometimes I wonder if our oncs intentionally leave out things like that from what they tell us, so as not to discourage us with new findings if they're not going to change our tx.
cjanet, neither of my oncs said anything about a need to transition from an A/I to Faslodex. I simply didn't take my Anastrozle one night (by this time I was sure it wasn't working worth a hill of beans), and was thrilled to start Faslodex the next day. I get my 2nd Faslodex shots tomorrow, so we'll see if my local onc notes any improvement.
Gotta run... Hubby is making chili rellenos for dinner (my fave, and it's Hatch chili season in the SW), but I can hear him complaining about needing help in the kitchen.
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Lindsey. - stable is great news.
Deanna - good luck on your shots tomorrow
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Lynn, Deanna, LindarE, thanks for your kind responses.
Hope Wednesday finds everyone successful in treatments, managing pain, and having quality time with families!
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Xavo. - well said. I agree. !
Today has me feeling stronger. One day at a time. Trying to stay focused on what I CAN do, don't know why that's so hard sometimes.
Hugs all around
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patty, You are an inspiration. I am glad you are feeling better.
Lindalou thank you for info on migrains. They are miserable but for me time limited. usually worst symptoms no more than 4 hours. So as long as the extemestane is shrinking my cancer I will tolerate it.
dlb I hope you get good news from your dental consult. It does build confidence when doctors spend the time to get all the info.
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Deanna keep us posted on dental consult. I'm glad I'm not the only one who has a hubby who complains for help, LOL.
I've been in more pain in the past week or so. Boy does it lead me down those dark paths. A lot of grinding and clicking noises in my neck. I see my onc Friday. I'm afraid if I complain she'll just say have another scan. I'm not ready for yet another scan. I am hoping and praying this Ibrance slows down this beast but my pain levels tell me differently.
I'm going away to Turks and Caicos this Saturday for one week. I'm sure they have internet and I am bringing my computer but I hope to be laying on the beach or eating yummy food. We'll see how it goes, I am going to try and enjoy to the fullest.
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Cjanet, Turks and Caicos sounds WONDERFUL to me. I love the beach, and it sounds so relaxing. It is just what we all need. Have a great time. I hope that your pains subsides, and you are able to enjoy every minute of your week there.
Lynne
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Cristina - that beautiful trip may help your pain. Enjoy every minute of it!
Update on my boil: my GP is referring me to a surgeon to have it removed. He said he could not do it himself, it's too deep.
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Cristina, so happy you have a vacation planned next week! Hope you can relax & banish those dark thoughts, which I'm finding are harder to manage when we're dealing with unrelenting pain. Are you taking the kids on this trip?
Had my 2nd Faslodex injections today. Loved the gal who did them this time, and hope I can get her in the future. The only disappointing thing is that my neutrophils have really tanked after being on Ibrance just 12 days. They're way low, and it looks like every other WBC & RBC component is screwed up -- mostly too low, but one or two suddenly too high. From what I've read both here and elsewhere, this SE of Ibrance may be more of a problem for those of us who have had the bc infiltrate our bone marrow. But it sure explains why I have been feeling so exhausted and frustrated at how little I get done in a day. Going to send my lab results over to my UCLA onc now for any feedback. In the mean time, if anyone has any surefire nutrition or other tips for helping WBCs, etc., please share!
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Hello to all,
My Internet has been down all day so just trying to get caught up here. Myra what a beautiful picture with your precious grandaughter, your joy leaps off the page, thank you for sharing!
Xavo, I'm so happy you received good news at Dana Farber and that they confirmed you are doing well and getting good treatment.
Patty, how are you feeling today? So nice to have you back.
Lynnwood, nice drop in your tumor markers, signs of a successful treatment.
SusanAnn, 19 months without progression is great, thanks for sharing your story. Also good to hear you didn't get sick even with low white blood counts.
Deanna, hope your able to start Xgeva and don't have to worry about ONJ. Sounds like you had a good visit at UCLA. Sorry to hear your neutrophils are already being affected on Ibrance, check the Ibrance thread, I'm positive I read someone there post about supplements to help keep WBC up and there may be other info as well.
Cristina, so happy you are getting away and I'm praying your pain goes away while you're there so you can fully enjoy yourself.
Linda, glad to hear something is being done about your boil, I hope once it is removed it never bothers you again.
Here's a funny pic of what I woke up to staring at me this morning, hugs to all, Annie
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I'm new here and just wanted to say hi as I step in these waters
Basically I just had DX and surgery ( mastectomy via laser)in June 2015. Was staged IIIA
Found great MO who was/is willing to work with me: I have an alt protocol in my pocket
Waited for base line scan until after my 50th b' day on8/3
Had scan yesterday 8/18 which advanced me straight to the head of the class to stage IV- bone mets ( and something questionable in L ovary)
Scared. Angry. 0 to 360 is uncomfortable
meeting with MO on Friday
I appreciate reading all of your experiences
Thank you
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cjanet, Wow, Turks and Caicos - heaven on earth! Have you been there before? If you have then I apologize for making these suggestions because you probably know this already. If not, make certain that you snorkel in the Coral Gardens it is about 4 feet off the beach, it is just past "Beaches" when looking out to the water it would be to the right. You are in about 5 feet deep water at the most and you will be able to swim with sea turtles and beautiful fish. Also, Cocoa Bistro is a great restaurant to try. Enjoy!
(& if you have kids there is a guy that does a cute boat trip and he finds a treasure, he actually shows you where the pirates used to hide. You also stop and do some snorkeling and have a lunch if I remember correctly.)
Annie, Your cat is so cute!
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Gaia - A warm welcome to you but sorry for the reasons that bring you here. Wishing you the best with your tx plan and sending you hugs.
Patty - glad to hear you're feeling a bit better and hope your surgery is healing well. Also, I hope you get some good times with your kids before they go back to school. Gosh the summer is flying by.
Thanks Annie. There is no guarantee that the boil will not come back after surgery because of its location (in the crease between thigh and privates) but it's worth a try!
Deanna - sorry about your blood results. Hopefully, it's just a temporary reaction to your new tx. Glad you got answers from a well informed team regarding Xgeva. My dentist once told me that if I needed major dental work, she would not touch me with a ten feet pole and would refer me to a specialist. She had a bad experience about 10 years ago with one of her patients (they were not aware of special precautions at that time).
Myra - Hope you're still crazy with joy with Mallory!
Romansma - how are you feeling? Better I hope.
Dune - thinking of you.
Musiclover - always a pleasure to see you popping in.
We've been having a heat wave the last few days, a real scorcher as Annie would say! I'm going away for next few days (pontoon and beach), I may not post much but will stay updated.
Sending hugs all around.
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Thank you for welcoming me - and inviting me to bring my fortune here'
I hope to learn and listen and heal and be of service here
many healing thoughts and pain free moments
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gaia0132, welcome but so sorry you have reason to be here. You will learn alot here and if you have questions there's always someone who can relate to your situation and provide an answer. I can only imagine how scared and angry you are, totally understandable. I was diagnosed stage 1, grade 1 and no lymph node involvement in 2012 and 2 years later I was diagnosed Stage IV. I never would have imagined this but it's been almost a year since my diagnosis and I'm slowly adjusting and feeling better than I did last year at this time. Once you have a treatment plan in place it helps you feel like you're taking some control. I still have dark days where I feel sad about my situation but for the most part I'm dealing with it one day at a time and trying not to think too far ahead. I feel overwhelmed when I do that so I find it easiest to just live in the moment. We're here if you need us, sending you healing hugs and positive energy! Annie
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Gaia
Glad you found this thread but sorry for your dx. lots of widom and compassion from the women on this sight. Glad you found a great MO working with someone you trust really helps.
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I must say i did finally come crashing down.
I try really try to stay optimist. I still am. But it's been a difficult couple of weeks. My daughter is been having quite a lot of pain in her back, sides and the energy has been low.First Annie, great pictures, you guys look like twins!! Good for you.
Deanna, so so sorry you going thru this hell. We are with you. Hope you could feel better soon.
PattyPepper, insane also, quick progression and increase sizes, just like my daughter!
Leah, we didn't get acquainted yet, but maybe you could go to Herzliya like Hindsfeet, to that major Hospital.
And everyone else, so sorry, i did read a lot of the posts, but cannot address everyone now. Love to all!!
i did have a complaint to this site, i wrote to them, that I understand it's the internet, but I was hoping that what we write here, does not go on public sites. But no such luck. They don't have a way to do so. Although I belong to other threads and it's private. I found my sentences in Google. Not happy about that.
Finally this week was Danni's 2nd tx wtih Kadcyla, Doc was adamant that only Kadcyla should be given, she says there is no proof that Perjeta helped. Second opinion Onco, also said so. third opinion, differed, but my daughter is only on Kadcyla.
As it turns out, it's been 10wks since the last PET/CT and bcs she started already on this new tx, it was decided that a new Pet should be done now, so we could have a baseline.
BIG disapointment. Significant progression on all osseous, and increase in size!!!! And something new in the left quadrant in the abdominal area. AND, Onco has no idea what that could be and does not wanna do more scan for that area for now, she says its too much radiation!!! You guys stopped laughing yet???
In my humble opinion, in her state do I care if she has ONE more scan(CT), NO i don't. It takes time for radiation to make real kind of damage, I am NOT worried when it will do. We need answers now. But she really is not doing it, she says Kadcyla will work on it.
But, she is worried with T8 lesion progressing and may be invading the spine canal, so we will see Rad Onco tomorrow and he will decide if he will radiate or surgery.
And cherry on top, Onco is all nervous that I am asking questions, I called and asked what's up, what we should do about the results, she got the results on Monday and ONLY today she thinks we should run tom and see Rad. And when I ask bt the abdomen, she wasn't even aware of it, and then she gives me this whole song and dance. She tells me, it's all part of the "disease" and that it's cancer and that's how it goes. I was ready to punch a good one. (Much talk). To make the story even worse, I just remembered that when I mentioned to my daughter is she has pain there, she thought I was nuts, her pain is more in the center of the chest, and Onco told me oh, yeah she's been complaining bt the pain in the abdomen so she's not concerned. Cuckoo's house. First i will deal with Rad tom, hoping for NO surgery. And then, gotta deal with the rest.Anyway i feel like giving her a lecture soon enough.
What I'm psd about, IS that if she is behaving all teenagie now, WHEN i will really need her, who is gonna comfort me(us), guide me instead of lecturing me(which she was). Hmm, maybe I should tell her exactly that. If she is scared, she should do a better job. I don't think I should have to deal with her jitters.
(there i burnt off some steam)
I wanted to keep up with all here, I will just have to start from scratch. So sorry, haven't been online all this time!!!! Drained.0
