Bone Mets Thread
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Hi all,
Dune...heartbreaking. I am so sorry. Sending you hugs.
Welcome to Lynwood and Amy.
Myra - welcome back.
Hugs to everyone..I'm too tired, too sick, and too depressed to write much more.
Terre
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PS---welcome to the other new people I've missed, and great pics, Myra.
I have the head cold from hell, I'm tired, I don't feel good, and I'm spacey from menopause and Femara. So sorry not to be more specific in greeting you all. No disrespect intended.
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I think we can forgive you Terre. I sure hope you feel better soon. I know all I seem to do is complain lately. I apologize but find it necessary to complain again. I'm supposed to go out with friends shortly to see Magic Mike 2, but oh geez, the pain. I have a few more minutes for the pills to kick in. Fingers crossed. I'm telling you, when the pubic bone acts up, it's a misery. I love you girls.
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Dunesleeper, Sorry you are going through a rough time right now. It is hard to deal with the pain for sure. Don't apologize for voicing out loud what many of us are thinking and feeling. This sucks and unless you are going through it yourself, no one can really understand.
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MY MO JUST SENT ME SCAN RESULTS! STABLE BONE METS WITH MARKEDLY IMPROVED RIBS AND STERNUM. HAPPY FOURTH OF JULY! 🎉🎊🎉🎊🎉🎊🎉🎊 Myra
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Ha Ha Ha Happy 4th of July indeed Myra!!!!!!!!
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Hello everyone, I'm back and omg I have pages to catch up on. Please bear with me and forgive me if I forget anyone but I feel overwhelmed at all the posts since I've been gone. We had an awesome time!
First, Myra I'm so glad to see you back and loved the beautiful picture of your family. I just saw your good news and I am doing a happy dance for you, wow! Happy 4th of July indeed! Please stay with us, we missed you!
Dune, I wish I had a magic wand but I'm sending you all the healing energy I can. Sorry to hear about your news, don't despair things can turn around for the better at any moment. Hoping you get to go out with your friends.
Terre, sorry you're not feeling well and whine away if you need to. It sucks having anything on top of what we're already dealing with. Hope you're better real soon.
Patty, glad to hear ds's are home with you but angered at the text that boy sent your son! I think I would lose it, not sure how that should be dealt with but the boy needs a talking to. What a terrible thing to say and in my experience with these type of children I have generally seen the apple doesn't fall far from the tree so I can see you being hesitant in talking to his mom. Other times parents are appalled at their children's behavior and have no idea that they're child is a bully. Best of luck in handling the situation.
Lynwood and Xavo, nice to see you both posting here.
Ok guys have to go back and read more, that's as far as my memory takes me.
Hugs, Annie
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I'm back ☺. Deanna, how did you make out with your onc yesterday? Are they planning a scan?
Dee, I hope you're recovering from the radiation and not feeling as tired. Has it helped your pain?
Auroaya, sending you positive thoughts and praying for the IV chemo to kick some cancer a**. I know you were thinking your onc wouldn't change treatments as it had just been changed but I'm praying this is a gentle and very effective treatment for you.
Linda, hi and I'm hoping you are feeling well. Suns back here finally! Did alot of walking while we were away so I'm a bit sore today.
Patty, your sons are adorable! Yes Canada day on the 1st of July is the same as the American 4th of July holiday. We had a lovely overnight stay provided by our daughters which included dinner at the hotel, and breakfast. The rooms were gorgeous, the restaurant was exquisite fine dining (I came home 2 pounds heavier). We did sight seeing and shopping as well. A nice 2 days away.
I captured this picture just outside of our hotel. Wishing all of my American friends a Happy 4th of July!!!
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Annie, that is a beautiful picture. Thanks!
Dune, happy concert time!
Myra, Congrats!
Terre, rest well and quick recovery.
Cancerwise, I still do not have much to update. Oh, yes, a question. My lower ribcage, along the edge of both sides, still has some mild pain like discomfort which does not need medication. It now feels a little hot, or burning. Is it normal cancer pain? I do not have serious mets in the ribcage according to the initial bone scan in February. I hope it is not progression. My first bone scan and CT scan after treatment began are still 4 weeks away.
Everyone, Happy Friday and Happy the 4th of July！
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Myra, WONDERFUL news! Celebrate!! So happy for you!!!!!
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Xavo, I also have rib pain but have mets in several ribs, one even found to be fractured on Pet scan. My rib pain is like a dull ache
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Good morning ladies. Thanks for all the response re my sons horrible text .
Deanna - what did the Dr say yesterday? Are you resting up from the trip? Is this the Dr that is 3 hours away from you? Thinking of you. Hugs!
Myra - stable ! Excellent news ! Doing a little celebratory dance for you right now. Tr school bus is def a place for bullies.
3-16. - love the idea "what do you think should happen". Gonna put that one to use
Dune - watching magic mike wit friends sounds fun. Hoping your pain goes away and you can realk enjoy yourself. Please tell us all about the movie when you feel like it. Looks like a good movie. No way Dh is going to go with me to watch it. Hope the theater seats are comfy. I have started carring a small tote bag with small pillow in it for when we end up in a hard seat somewhere.
Amy - welcome. Wow you've been busy Reading over the last 100 pages. Glad you found us and are joining in. Hope your left hip feels better soon. Your dad sounds awesome !
Terre - hope you shake that cold soon
Lynn & gg - hi
Annie - glad you are back and had an awesome time. Where did you guys stay in the states? You got pics ?
Xavo - not sure about your ribcage pain but surely someone will come along soon who does. Truly one of the reasons I love BCO, always someone who has beentgere_ done that and willing to share experience and helpful tips
I talked to ds1 some more about the text. He really really doesn't want me to call. I certainly don't want to break his trust. Right now he tells me nearly everything. Don't want him to think he has to hide things from me to stop me from reacting. Dh had immediately said we are going to his parents but now thinks I need to cut the apron strings or at least loosen them up. Decisions, decisions. Its s rainy day here. Expecting rain on and off all weekend. Of course , it always rains on the 4th here. We are just hanging out tomorrow. Expecting some friends who over. Going to swim, grill and maybe have a beer or two. So the rain won't hurt us as long as the lightening stays away. Dh took DSS to by fireworks last night. He gave them both a budget of $40 each. They came home with the mother load. Last year they had fireworks still left in Jan of this year. They are content to just do a little and put them away to save for another day. When we were young we never had any left after the 4th. Nope we wouldn't quit til they we are gone. Glad I am making pennypenchers ofthem.
So what is everyone else doing for the holiday?
Hugs all around.
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Myra, great news on your scans! YaY!!!!!!!!
Xavo, I've alway described my pain (and I have diffuse and extensive bone mets) as burning or seering or aching -- very different from any other type of pain I've ever had. It's around my shoulder blades, lower back and rib area, and comes on mostly after I've been on my feet and out and about for awhile -- not when I'm just sitting around -- at least not at this point.
Terre, sorry you are feeling so crappy. I honestly wish you could pull back on your work schedule -- at least until you get that sickness stuff under control. It sounds like you are pushing yourself way beyond what you should w/mbc, and there just isn't enough fight in you to go around. No doubt about it... you need to slow down, girl!
Annie, so glad you had a good time away! I personally think that's the best "medicine" for our mental and emotional health.
Good to see you again, Karz & 3-16. And welcome Amy! I was really concerned to read about your hip. If you read thru all 100 pages here, you no doubt saw my experience, which went from pain so bad that I needed a cane for several weeks, to suddenly such excrutiating pain that I ended up in the ER, screaming in pain, and needing major surgery (hip replacement, rod in my femur). From your description of your pain, and knowing how mine went from bad to unbearable, I'm not sure I would wait two months for those scans, but would probably ask for an MRI now, specifically to see if you just possibly have an undx'd fracture. JMO.
My UCLA appt. went about as I had expected. Labs ordered (which I do w/my local onc) to see if TMs are continuing on the upswing, and a CT and possibly a bone scan if they are. And UCLA radiology called me before we even got home to schedule the CT, so my DH's observation that my onc looked a bit concerned was probably right on. So the plan is... if my mbc is truly active again... Faslodex & Ibrance. I asked about Femara+Ibrance, and was told I can't do it since I've already had Anastrazole. What I didn't ask and feel a bit bummed out a bit is... does this mean Femara and Aromasin are just off my list of possible txs w/out ever trying them? On the positive side, Sara Hurvitz, my UCLA onc, told me they did the Ibrance Phase I & III trials @ UCLA, and she has patients who have been stable on the combo for several years now, including one who's doing well at 6.5 years. So she was very positive about and keen on Ibrance, although she did tell me 40-50% of patients end up with low count issues.
As far as the drive, Patty.... it was horrendous this time. 3 hours in very heavy traffic in, but 5-1/2 hrs. back -- probably due to some extra holiday traffic. We literally crept along for hours in the "fast" lane, sometimes entirely stopped or creeping at 12 mph. So crazy and stressful. But there's absolutely no comparison for me between the care I get @ UCLA and locally, in spite of lovely and very experienced local docs. UCLA is just a cut above in every way, which is why I urge others to at least get a second opinion at their closest NCI-designated cancer center. You just have to experience the difference to understand it.
And so sorry about your son's experience with the bully! I actually read your post to my DH as we were driving, and asked him what he would do, and he was ready to call a radio station, call the parent's workplaces, and generally publicize what a horrible child and parents they are -- probably a typical knee-jerk reaction from a Dad and hubby with an mbc wife, LOL! I'm glad you got more conservative advice! Talking to your son about it and following his lead sounds ideal for the time being. But what an awful thing to have happen. Kids can be so mean.
Hoping everyone has a lovely 4th. July 4 was my Dad's b'day and always a big celebration in our family. It's also the day my Mother passed away, which I've always believed she chose. So it's kind of a mixed emotions day for me. (((Hugs))) to all, and sorry for the "book," but I clearly missed quite a bit yesterday, and wanted to share my UCLA experience. Deanna
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Deanna, I already failed femara and now am on femara and Ibrance which seems to be working. Several of the women have also. There is so much different info going around. Myra.
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Thanks all. I am going to continue reading but take a break from posting for a while.
Sending good thoughts and hugs to all.
Terre
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Well, Deanna, maybe I should try a 2nd opinion. There's a group of John's Hopkins oncologists down the valley, and they do accept my insurance. I chose Carroll County because the hospital would be so much closer. Hopkins is on the other side of town. Son of a b****. I just don't know. I'm definitely down in the dumps still. And I hurt: mostly ribs and pelvic bone. I gotta tell you: when that pelvic bone hurts, it is mighty hard to get around. It's even hard to lay in bed. I need to fall asleep so I can stop feeling the pain and depression. Sorry to be a downer.
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Dune, you're not a downer, wish I could give you a hug. I hope you're able to fall asleep and I pray you wake up feeling better.
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Terre, since I was one of the last ones to post before you bid us adios for a bit, I sure I hope I didn't say something to upset you.
That's interesting, Myra, that your onc kept you on Femara but just added the Ibrance, if I'm understanding what you wrote. But your situation sounds different than mine, especially if you were already on Femara. I told my onc that I knew a few women who are on Femara+Ibrance, but she said that was not for me and quoted that thing about us needing not to have been on any other A/I previously. Then today I pulled up several recent articles (all June 2015) talking about a new Faslodex+Ibrance study. If anyone wants those links, I'd be happy to post them.
Dune, what can a second opinion hurt? I always say, two heads are better than one. I just know in my case, a local surgeon really blew my initial surgery. She's an excellent surgeon with an excellent reputation, but she let something happen that never should have (detailed on my bio page), and I didn't even know about it until I went to UCLA for a second opinion! Had I gone to UCLA from the get-go, and had I listened to them about taking Anastrazole (which I refused to take profylactically), my situation might be different now. Especially since you're down in the dumps -- which is totally understandable after going through Taxol with no response -- getting a second opinion might make you feel a lot more empowered. Oh, and about that pelvic bone pain. Are they absolutely sure you don't have a hairline fracture??? I would ask them to review the CT specifically where you're in pain, just to be sure. (((Hugs))) Deanna
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Deanna, I had failed femara, then Falsodex and then Ibrance was approved I was put on that and again started on femara. Check out that thread and you can see most of the women there are on second and third line tx. First line tx was only for the trials. Paloma 3 added the option of Falsodex with the Ibrance. Myra.
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Thanks, Myra. I will definitely ask my onc a lot more questions before starting a new tx. I started to read the Ibrance thread this a.m., but it's long and so far I've only gotten through the first few pages.
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.Deanna - not you at all! Just need a break for a bit.
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Good morning all,
So much going on this thread!
Patty - that's pretty awful. Really delicate situation. I won't risk my opinion as I have no kids but some can be pretty mean.
Dune - I'm so sad to hear about your progression. Crap. Maybe a second opinion would help, as Deanna says 2 heads are better than 1. Hoping and praying your next tx does the trick. I can relate to your pubic bone pain and you're no whiner, girl. I have a big met there with what they call an unconsolidated fracture. The pain is just awful and walking is very difficult. Much better though after rads and pain meds, but I can't overdo it.
AmyQ - happy you joined us. Yes, we're a great bunch.
Terre - sorry you're feeling crappy. Come back when you feel up to it. In the meantime, I will be thinking of you and sending you healing vibes.
Myra - I am so happy for you. It is awesome! Really. It calls for celebration. I hope that all on Ibrance get good results as well.
Annie - Nice to get away once in a while huh? Glad you enjoyed it. Don't worry about the 2 pounds....if it was worth it.
Xavo - I also get hot and burning pain with a rib met that's been stable. So small but when it decides to act up, it hurts. I thought there was progression, but no.
Deanna - Commuting can be very tiring and doesn't help our pain. Praying for good scan results for you. That's very encouraging news about Ibrance. I wish Health Canada would approve that med, but not for a few years to come.
Sorry if I missed anyone. I'll be out most of the time until next Wednesday for my infusion. Trying to enjoy the pontoon and good weather as much as I can until infusion. That said, you girls are always on my mind.
Linda
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Happy July 4 th to american women.
xavo, I relate to your post. Right now, I am playing a game I call name all the things this pain can be other than progression. I have a met on my rib that has never needed to be medicated but lately it is grabbing my attention more. I saw arnp last week and she said if I was still bothered by it. next week call. So looks like I might get another scan. However last time I had a concern like this it ended up bursitis not cancer.
Myra so happy for your good news.
Patty wishing you the best of luck with your son. I know I do my best parenting when I do my best listening. (a constant work in progress for me).
Deanna I am thinking of you and hope docs find just the right treatment plan for you.
Thanks to all for continuing such a place of positive support.
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lindae. - def enjoy that pontoon til tx. Sounds fun.
Terre. - sometimes we all need s break from cancer land and its horrible side sffects. Thanks for telling us so we won't be worried. Just know, you are an important part of our "family" here, OK.
Dune , I know how you feel about rather sleep than deal with the pain. Depression is def to worsen. I dont really know what to say since I keep finding myself in the same situation. Since you can get a 2nd opinion just across town, why not try ? I know the whole getting there and back causes pain and exhaustion, but maybe just one visit will help you decide. Hang in here. Agree with all Deanna said esp about a possible fracture that could be fixed with minimal discomfort.
Deanna. - I love loved your book. Lol. Love knowing how y'all are doing. Your dhs reaction was the same initial action of mine. We really thought it was this neighbor kid ds1 was in TX still when it happened. Dh was ready to go over there and spank the boy himself. I think steam came out of his ears like on a cartoon but thankfully he thought it thru. That def came with age for him. Lol. I've been following the lbrance thread since it started ,not posting , just because it seems like a really encouraging new tx. Most people are 2,3,4 line tx.. Many are taking femara\lbrance combo but maybe the had recently failed femara? Not sure. I take femara and my mo have discussed this at length. He really believes it can easily double the time before progression after femara fails. He does not think I should go ahead with the combo until femara fails. He said prescription industry making way too much money on this. He said trials haven't proven that beginning wit the combo or beginning with femara alone and then using combo after it fails makes any difference in progression free time. It simply fattens the wallets for pharmaceutical companies. I appreciate his honest opinion. He said and the thread echo's the worst side effects so far are low blood counts, infections and burning to hands and feet.
Sorry all was trying to keep this short and can't remember what anyone else said. Hugs all around and happy 4th to the Americans.
We are having some friends over @3. Dh gonna grill some good grub , he is picking up some already preprepared sides so I don't have to make pain for myself by standing at the stove, then swimming and hanging out til dark where the boys will entertain us with fireworks. I would usually enjoy a beer or two poolside but my stomach has been so sensitive since Jan. I don't think its worth the possibility of feeling nausea. Oh well. Trying to keep it easy. Trying to smother that thought we all get at holidays about making them perfect in case they are the last. Thank God for make up for concealment. But not going for perfect this year and so much more relaxing. The boys won't remember we ate chips and steaks on paper plates but they will remember the laughter and whether I am up with them or down for the night because I worked myself into too much pain to bear. Oh yeah ds2 is my little chef. He always loved cooking. He is 10. Like when he was 5 he wanted an easy bake oven for Christmas. My Dh was so embarrassed. But I found a green one and he got it. He made ussome yummy thungs in it for sure. He as since graduated to the stove and he has now quite a few recipes that we love already. Today He is going to make Hershey chocolate pie that his meme taught him. Yum yum. Now if I can just get ds1 to love to clean, I'll have it made.
Love to y'all.
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Hey 3-16. Guess we posted at the same time. Thanks for the listening advice.
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patty
Thanks for the description of chocolate pie yumm. I am riding in the car now as. my husband drives our family to the lake to meet up with more family
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Lynnwood, Patty, Deanna, Linda E, 3-16, thank you for your replies to my question and concern about my rib pain! It might well be just normal stuff (hope so).
Patty, finally I figured out my answer to your upset caused by that cruel kid (sorry it took so long, but it's been on my mind). You probably need not to say anything to the parents or the kid, for they do not matter at all (being capable of cruelty is their bad fortune). You should just say it to your elder son: " Watch me, I am going to live!" I think what made the bad kid believe he could hurt your son is the fact that your son is truly worried. You only need to address this worry by assuring him that you are going to be around for a long time, definitely long enough to see to him growing up.
Dune, I am thinking of you. I am a little worried. I hope your next treatment will help you greatly and you will soon feel a lot better.
Deanna, how come you see two Oncs regularly?
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Xavo, to answer your question... When I did chemo in 2008, my UCLA onc suggested that I find a local onc because if I needed hospitalization for any reason, UCLA would be too far away (3 hrs. o/w on a good traffic day), and without a local onc, no one here would know my hx. So I did chemo & rads locally, under the guidance of UCLA. Then when I actually ended up in the ER & hospital in March of 2014 with pathological fractures in my femur and pelvis, I was very happy to have a local onc, who is more of a general onc, but has 35+ years of experience that I also value. So I see him for routine stuff as long as I'm stable, and have only needed to go to UCLA every few months, including for scans, which are far superior when done there.
Here's an article in which my UCLA onc, Sara Hurvitz, is featured. Here she's talking mostly about Her2+ bc, but it gives some insight into how incredibly knowlegeable and positive she is. http://www.vcstar.com/news/local-news/new-research...
Hope everyone's having a good holiday!
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what a wonderful day I have had. So thankful I made it the entire day. Everyone had a great time, esp DSS with the fireworks. I didn't shed a single tear. Pain was manageable and thanks to a nap I stayed awake .
Being thankful to all our military past and present. My step dad retired from the navy and my fil served in the army both during Vietnam. Very proud of them. Anyone else have military members in their family ?
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Xavo. - oh yes thanks for the well thought out advice. I still havent decided what to do yet.
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