Bone Mets Thread
Comments
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Dee, It sounds like your onc is on top of it all and following you very closely. Good to hear that the skull met is stable. Your photo looks absolutely beautiful and happy that you were able to enjoy a dinner with your dh.
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Dee, picture is lovely. So glad it's a skull met. My Dr. said they are just like any other bone met. I hope that's true. Please keep us updated. Dana XO
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Good morning,
Cristina - I haven't experienced that problem on Ibrance so far...usually the opposite. Hope you feel better soon.
Dee - the photos were beautiful and it was great to hear that there are no brain mets! Stable and let's monitor have become positive words lately. Hope the wine and the dinner were relaxing!
LindaE - So glad to hear about the results!!! Happy dancing is in order!
Patty - Snow days are still fun when we are adults! Unexpected times together feel like a bonus.
Headache today - but it's due to a wine and tequila celebration with good friends last night. I don't need a dr to explain pain this time :-) Weird place for a celebration...HyVee Grocery Store's cafe. They have a half price sushi and wine night on Wednesday, plus I was able to pick up dinner for tonight on my way out. I don't think I've ever felt that cheerful at a seafood counter in a grocery store...
Have a pain free day ladies!
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Gorgeous hotel lounge, Dee! And hooray for a good brain scan and stable skull met. I'm still intrigued with the phantom smell thing. Is it all the time, or does it come and go? Could one of your meds possibly be causing it? Anything about those different since the smell issue started?
txmom, so happy for your scan results, too! And yay to ending chemo in favor of Tamox! That's great news!
Rachel, your TMs are wonderful... so close to normal range!!! Congratulations on that!
Loves, your two week illness must have been miserable, as well as scary to have those things going on for that long. Hope you're feeling much better by now.
Wendy, I had also noticed your newest avatar. You look more like an older sister than your daughter's Mom!
Patty, so glad you had a snow day with DS2. Isn't it funny how mbc changes are perspective on the little things? I'll bet many Moms don't appreciate them 1/2 as much as you did!
Lynne, how is hubby doing today?
I had my first Xgeva shot yesterday (yay!), along with 2 Faslodex shots and 4 vials of blood drawn. Felt a blt like a pincushion by the time I got out of there. WBCs too low to restart Ibrance for a few days, but that's probably good, since I felt pretty sluggish and a bit achy first thing this a.m., I'm guessing maybe from the Xgeva, or maybe it's just due to my low counts.
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dlb. Hope you are up and about full of energy.
Dee. - beautiful
I write. Lol. That would give me a headache also.
Wendy. Proud mama of dd that's awesome.
Lindae. - thinking of you.
Dss home again for snow day and I am positive they'll be out tomorrow too. Having hot chocolate, popcorn and watched a movie. I even stayed awake. Yea. I cancelled my mo appt for tomorrow due to icy roads sidewalks,parking lots etc. No taking a chance of falling and breaking something new. Mo was gonna discuss radiation. Oh well it can wait til next week.
Hugs to all
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Deanna- I feel all sorts of things after the xgeva shot... I met with RO yesterday for my 6 week check up and he spent a half hour with me addressing all my questions. One thing I didn't know is that bones do not start the healing process from radiation until the 6 week mark after completion. I also found out that areas of weight baring bones (Ie femur, etc) are not as sensitive as say the ribs are. Especially since I broke the rib that they did rads on. So I will experience pain there maybe for years. He also said that Xgeva certainly can play a role in feeling some discomfort where the mets are. Where my largest and most uptake lesion was, (ilium) I never had a bit of pain, not even before or after rads or now. But that tiny little one on my 9th right rib is making me crazy.
I wish I had more to do, I need to get out of the house, I am so sick of thinking about this all the time, and wonder what it was like when I had a pain a few years ago and never thought a thing about it. I hate obsession.
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Thanks for the great info, Carol. My femur didn't start hurting (Growing pains) for about 6 months after surgery/radiation. And I hear you - my rib met is the most painful one, followed by spine. Both are necrotic, but they ache sometimes. Bizarre. Whereas my femur wasn't ever that sore from cancer - the growing pains hurt the most. One of the reasons I work with kitten rescue is it gives me something to take my mind off cancer. So, maybe look for a volunteer opportunity? It takes your mind off your problems and gives you a good feeling helping someone else. I do the kitten/cat thing because I frankly like animals more than I like most people, but I'm an engineer so that's to be expected.
Iwrite - I had to laugh after seeing Dee's pic of the stunning restaurant and then envisioning the HyVee sushi bar.
Sorry you have a hangover though. But so glad you had a good time.Patty - hot chocolate and popcorn on a snow day sounds perfect!
Deanna - hope you feel better soon. That pincushion thing is no fun. Always reminds me of this cartoon...I feel like the tagged bear.
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Hi all!
We're finally home after a long drive in pouring rain & dense fog. My RO called while we were on the road. She doesn't like images from the bone scan, so she's ordering a CT scan of my hips to see just what is going on with them & then we'll go from there. She figures on doing rads within a month.
We also talked about the "met" on my left orbital, & she's also not completely confident that I have a skull met that it could be an old injury & that's why the radiologist says it's stable. She offered to do an MRI, but we decided to just hold off for right now until I am symptomatic again & then we can revisit. We both worry about the amounts of radiation, I'm trying not to have too many scans. She says that having the headaches & smoke smell isn't symptomatic of mets especially because it comes for up to 2 weeks & then is gone for anywhere from a week to 2 months. But she says if it comes back we will definitely be doing an MRI.
We are still both a bit stressed, but I'm sure once we've been home a day or so we'll be good. I'm sorry I am so far behind that I doubt I will ever catch up, but will go back & read. But you are all in my thoughts. Cheers, Dee
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Ladies hi,
I come here occasionally to read or to ask a question. I have been dealing with extensive bone mets since 2011. In 2012 I had to have a rod placed in my left femur due to the mets and have had lots and I mean lots of radiation, in some areas I can't have anymore radiation.
My treatment has been Faslodex, Abraxane, Xeloda and got over 30 months from this drug, and currently on Halaven. I have been on it since Nov. and my tumor markers, Alk Phos keep rising plus I simply have no energy. I never have energy when the cancer is growing.
My oncologist is suggesting Aromasin and Ibrance. From what I have seen it is Femara and Ibrance. Anyone been on one of the other anti hormonal other than Femara with Ibrance? Faslodex works as an antihormonal also and the tumor grew that I had to have the rod put in my femur when on Faslodex. Then I moved to Abraxane.
My oncologist warned me that Ibrance will really drop your white count and you have to watch for infections, some of which are life threatening and also said you get really bad mouth sores Anyone experienced any of these bad side effects?
Life goes on - we keep trying. I know what is good for one may not be for another but curious about the other drugs Ibrance is used with and the side effects of Ibrance. I appreciate any feedback you can give me - remembered from others or your own experience. Thank you !
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Namian, I've only ever done Ibrance and Femara that I started last June together. My white cells took a hit at first but have rebounded. I've only have one cold since starting. I get a little tired but that seems better now too or maybe I've gotten used to it. I think I have more SE from the Femara than the Ibrance. No mouth sores at all although others here have complained and I think they use something called magic mouthwash. You are right that everyone responds differently. FWIW--I've been tracking my Alk Phos and every time I have bloodwork (I've only had 4 since June--way less than many) it has gone down. I'm getting scanned again in a few weeks to see how the tx is working.
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Naniam, I've been on Faslodex+Ibrance since August and haven't had any mouth sores. I don't do anything special, except I have always taken supplements, including Vitamin C, and I think that might help. I also use a Biotene type mouthwash -- CVS's own brand, I think.
As far as the low counts, I was told that they rebound quickly, which mine always have, and that the low counts seldom result in serious infections. Of course everyone is different, and your body may not be in a position to handle low WBCs or risk infection. But serious infections are not a common SE.
As far as the Aromasin, I'm wondering if your onc is suggesting that b'cuz he may not be able to get Femara approved for you, since Letrozole+Ibrance was FDA approved as a first-line of defense combo. I know that sounds weird, but insurance companies take those things so literally, maybe he needs to get a bit creative to get the Ibrance approved? I don't know, but I would certainly ask him why he's recommending Aromasin, as I don't think there is any trial-based evidence to suggest using it.
Have you checked the Ibrance thread here? That would be a good place to repost your question, if you haven't already. Here's a link to it: https://community.breastcancer.org/forum/8/topics/...
Good luck, and please keep us posted. And join us on the Ibrance thread if that's the route you end up going!
Glad you're home safely, Dee. Even with the nice B&B and dinner, it sounds like an incredibly stressful day or two.
And thanks for that cartoon, Terre. Very funny! Deanna
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Naniam, I am on Ibrance and Aromasin but am on Faslodex as well. My MO believes the AIs can all be used interchangeably and he views the data of Ibrance with Femara as demonstrating it would work with any of the other AIs. I started out on Aromasin and Falsodex as a first line therapy (before Ibrance was FDA approved) and Ibrance was added after the study came out showing it worked with Falsodex.
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dee. Glad you are safely home. Great news !!! No skull met but past injury. Woo hoo.
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Naniam, I'm on the Ibrance/Aromasin combo. I was NED on Anastrozole (Arimidex) for over 4 years, and my oncologist's reasoning is that my good response this drug is worth trying to jump-start by adding Ibrance (Anastrozole and Aromasin are similar Al's). She's basically saying the same thing as JFL's onc. is. I got a second opinion on this from a UCLA onc. (where Ibrance trials were held), and she agreed that it's worth a shot. So far, so good as my TM's are dropping.
Wishing you the best!
Rose.
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steelrose. Dropping tm's is a good thing. Yea
Good morning all. Hope everyone is staying warm. Feels like 18 this am. Brrr. Dss are on 3rd snow day from school. Not really sny snow. Just ice. Csnt have much fun outside like that. Beginning to drive eac other crazy. Lots of arguing which puts me in a foul mood. Ready to put them in seperate rooms for the whole day. Love my dss so very much but really ready for school to get started again. I always put on my best face around them and its exhausting !! I need a break. Just to rest and sleep.
Quite in here today.
Hugs all around
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Patty - ice is no fun for sure! We're having very nice sunny days up here and Lady Praline is very happy walking with me. And so am I of course! Unusual low temps for this time of the year but no complaints.
I hear there's a big snow storm in the works in the US. Hoping that all affected by this will safe!
Sending hugs all around!
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Patty ah I remember those days filled with cookies and cozy fires and fighting. I used to make a big pot of play dough and my sons till the age of 12 used to have a blast with it. Kitchen table was a mess but the sounds were better than the arguing.
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are there any long term survivors with bone marrow mets. I found some discussion pages back in 2011 and 2012 and when I clicked on names of those women many had passed. I know that's a cruel game to play on this board. My last pet in December showed bone mets stable and improving. But I needed a transfusion RBC 7.5 and platelets 60. A month later platelets 80 and RBC 105. I'm do scared.
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Rachel don't be scared-- Make sure you are eating enough protein! I count my protein by going on nutrition data and putting in everything I eat. I am vegan. The truth is, by the end of the day.. you need at least two and a half full cups of beans to get close to your daily requirement. That is without adding in the little protein you can get from almond milk, grains, and veggies. You have to have at least 45g of protein per day. If you are not getting that then sneak in a nice fresh piece of fish to make up the difference. The pet scan in December was great news! Focus on that for now and don't think about statistics. There are so many variables to it all and each case is so different. New trials are going on all the time. I am preaching to you, now hopefully someone can preach to me.. We all are scared.
Hugs
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Rachel I have no advice but sending (((hugs))) of comfort and prayers for healing
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Rachel- I add a scoop of Whey protein powder to smoothies or almond milk in the morning to pump up the protein levels. This was helping when I was working with a trainer a few years back to build muscle. So far, it has helped keep protein levels within the normal range. A canister of Whey protein runs about $15-$20 at the grocery store and lasts for a few months.
Steelrose - congratulations on your 4 year mark! Good to hear the tms are dropping.
Naniam - I'm on Letrosole and Ibrance. Had one mouth sore late in the initial Ibrance cycle on 125 mg and my wbc tanked, but came back within a week or so. No infections, thank goodness. My onc switched the dose to 100 mg and this cycle there were no mouth sores. Did have some numbness in my fingertips, but it was better on the lower dosage and it goes away during the off week. Feeling less exhaustion than the first cycle. Hope it works well for you!
Patty - This is where I cave and give in to movies and video games...hope things melt so the kids can go back to school Monday!
Dee - Glad you made it home safe and hope you can unwind over the weekend. Worry can wait until next week.
Carol - Good to know that obsession is a normal side effect of this! I've been reading fiction to take my mind off of this when the edge comes into view. Bought a book titled "Learn to speak Gaelic" (Scottish). Next thing I'll be at Amazon buying a kilt for DH...
Terre - love the cartoon! I have noticed that when they do the Ibrance injection slowly, there is little to no pain...just an idea. BTW - I get a headache by walking past a glass of wine...such a lightweight. You are right - Dee's place was MUCH nicer!
Flying the denial flag for the next few days...I worked out this morning so will attribute any and all pain to exercise.
Have a good weekend ladies!
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- thank you for advice. Do you have it marrow as well, Lwrite and LovesMaltese? So frightened, can't stop shaking and crying.
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Oh, Rachel, the "game" you're playing doesn't make any sense because you have absolutely no idea of anything else about those women, including any co-morbidity factors and other stats, what txs they were on in what succession, and how they responded to those txs. Fortunately or unfortunately mbc is so individual, you really can't compare yourself to how others do, which is what's so maddening about overall stats. There are 18+ year survivors out there, and there are women whose mbc, for whatever reason, is so aggressive that nothing seems to put it in check. I do think it's important to educate yourself about your situation. I also think it's important to fully trust your onc, which would include knowing how many women he or she has treated with bone marrow mets, and how they're doing. And if you don't like those answers, find someone who has more experience and can be more positive. And yes, I have bone marrow mets, and I cringe when I see it in writing, but I try not to dwell on it. But I'm also probably quite a bit older than you are, and I totally understand that this has got to be much scarier when you are younger. Has your onc suggested any way to get your counts up, including possibly referring you to a nutritionist or dietician?
Hi to everyone else. Auroya, how are you doing? Patty, I'm chuckling at your boys behaving normally around you. That's a good thing!
I'm still waiting for my CA27-29 results from Thursday's labs, but I'm with lwrite on flying our denial flags as often and much as possible!
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I'm 56 and you look younger than me! Thank you for posting. Xo
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i usually limit TV, video games and internet but def caving in. Only problem is electric keeps going on and off. Luckily we have gas heat, gas water heater and gas stove so we will be OK whatever this weather brings. Yes I am glad they are behaving normally around me instead of tip toing around me.
Hugs all
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Hi everyone, dlb thank you for inquiring. Things are going pretty well I had chemo last Wednesday and no se so far ( makes me wonder if it's working). This week I'm officially off my orthopedic brace from my hip replacement and have had no pain, so thankful for that.
Rachel I have no advice but sending (((hugs))) of comfort and prayers for effective treatment
Reading all posts and thinking of you all.
Aurora
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Hi again,
Mine is in nearly every bone, but not in marrow (that I know about). Deanna is right, every person is different and if your mets looked stable last month, hold on to that good news until you really know about what the latest numbers mean. Get some other opinions! In the meantime, if you feel like crying, get a big box of soft tissues and let it out. We ALL feel like that at times. This is scary stuff.
We are still here. We each have people (and pets) we love, who we can talk to, or laugh with or hug. It helps me to schedule "playdates" with friends who make me laugh and forget about this for a little while. I like my onc, but he isn't my friend. My friends deserve as much time as the doctors and they remind me I'm still alive! Carol is right. It helps to get out and find ways to stop thinking about it. Rachel, you have friends and today is yours...cold washcloths help me with puffiness after a good cry :-) Hope I'm not preaching...we have all been there! Kathryn
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Rachel, I don't understand the difference between bone mets and bone marrow mets. I have lytic bone mets.
Deanna gave you some great advice. I always would encourage anyone and everyone to always go to a top cancer facility for a second opinion no matter how much you love your MO and no matter how many years you have been seen by them. No Monday morning quarterback!!0 -
GeeWiz, I feel like I am going backwards. I am now another 3 pages behind on this thread. It just shows how responsive everyone on this thread is. It is wonderful how supportive you are to each other. I really will get caught up again one of these days.
It is wonderful to have my DH home. He is just beginning to get an appetite, so I have been cooking all his favorite foods. Yesterday I cooked several make ahead meals so I can defrost and cook when he feel like having something. My dil came over, and I took some time to run several errands. I am sure DH can stay alone, but I didn't want to take any chances. Today I am sore all over - paying for doing so much after a month of inactivity. It will take time for DH to regain his strength, but he is doing well.
Aurora, You have come a long way. No brace and no pain? Woohoo! Be grateful for the lack of SEs with the chemo. Don't question it. Tx can work even when we are lucky enough to get through it without SEs. I am happy for your news.
Patty, I am glad you have had this time with your sons. Here in N H we have had very little so this year. The big nor'easter is expected to go out to sea south of here. I must say that I am glad. I am not ready to lose power or anything right now. Unfortunately, we also lose water and heat when the power goes out, so it is no fun. Someday we will break down and buy a generator.
Rachel, Kathryn is right. We all have times when we have to cry. There is no way around it. Let it out. I am praying for you and sending you hugs.
i think about all of you all the time.
Lynne
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Rachel
Have you been diagnosed w bone marrow mets? I have so far just one big hip met and some lymph nodes and have been having regular Hb red blood and platelets infusion for about 8 months. Nothing seems to stop the counts dropping - platelets sometimes drop to 5! They did a bone marrow biopsy and it was ok. Transfusions don't necessarily mean marrow problems.
My onc would think platelets of 80 and Hb of 105 were good
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