Bone Mets Thread
Comments
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Mom -
That's quite a post from someone who claims to have a hard time keeping track of things. Objectively speaking, you have it together.
The stress and the fear seem sidelined and out of the way of your fine intellect and incredible capacity to manage this complex situation. Nice work. Go get'em. Actually get some sleep, then go get'em.
>Z<
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Thanks Carol & Lynne for the vote of confidence. Babs, did you have to go off Ibrance because of the SE's or did it fail you?
MomATT, that was the POG (personalized oncology genome) program that they needed liver tumors to get 5 samples from, that they wouldn't take 5 samples from your bones because it would be too difficult & too painful. That's not the trial I'm going on, it's called Palestra & uses 2 different doses of Ibrance. Sounds like the SE's aren't too bad. So I"m going to keep a good attitude & assume that I will be good & if I'm not, I will counteract it with good drugs!
Good to see you here, hope Dani's doing ok & that you're taking care of yourself. ((Hugs))must go to bed NOW!
good night all, cheers, dee0 -
Dee. Unfortunately Ibrance/letrozole failed me so I moved on to Xeloda on 1/1/16
Babs
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Good Morning all,
Angela, You can ask for a hard copy of your reports anytime. I always get mine after each scan etc. I keep mine in a folder and can go back and look at previous scan reports if need be. It can be reassuring to read them and get the exact impression and findings.
Carol, I loved your heart and butt description. That's exactly how I felt. Oh to not be able to get off the couch.....I remember that.
Momal, Hope the Trazadone did the trick for you. Sleep can be elusive thing for me too. Dani is lucky to have you by her side and in her court. The NCI MATCH trial utilizes your own tumor sample and runs it against about 35 drugs that may work for a specific tumor makeup and treatment. I will learn more this week but as I understand it, they can't use a bone biopsy as that needs to be decalcified and the study wants a soft tissue sample. That poses a problem for some of us of course. Worth asking the onc about it at any rate.
Terre, I almost adopted a cat this past weekend but it turns out it was quite sick. Any kitten news on your end? How are you doing?
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MomATT- (Is AT&T your wireless carrier? JK) I hope you got some sleep! I was happy to see that you got some help in a referral for Dani. Half the battle is keeping normalicy for her and the family I salute you as that is no easy task.
Lindalou- I think of you every time a kayaker paddles by. We live on a lake and the serenity of all of it is so healing. Which reminds me that my CD's arrived! Maybe I will venture into watching and starting that soon!
Babs- I hope treatment is kicking this to the curb- Been thinking of you too.
Carol
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Mommal - I hope those sleeping pills do the trick for you. Like said above, you certainly have it together! I'm still stable but looking ahead for tx options. Further testing should happen in Aug/Sept. If new tx is recommended, I'd like to join the same clinical trial that Dee will be participating in. Part of me would like to jump in the trial right away because this may be my only chance to get Ibrance. I'll see what MO thinks in Aug. And another part of me wants to stay on Femara as long as I can. I'm waiting for a response as to how long they will be recruiting.
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Hi Everyone,
I'm so far behind but wanted to respond to a few things.
Debie, My bone mets biopsy was HER2 unequivocal/neutral but since my breast tumor was HER2+ my MO added Herceptin just to see...My mets have been very responsive, the bones have healed, I have no pain, and I've had no progression. I do have the Herceptin runny nose, my hair and nails grow slow but that's about it. I hope this is helpful to you.
Dee, I hope all works out with the trial. Sorry you have to take the ferry over for blood work. What a pain.
Mom ATT, I had a spot on my liver which my MO "watched." It showed up on a CT in April. I just had a scan (at 8 weeks instead of the usual 12) and it's gone. My MO said that it's normal to have things pop up different places and then resolve. It happens all the time. Hoping that's what it is for Dani.
Lynn, I have read things on my report that I didn't know, like um, oh my pelvic fracture healed, I didn't even know it was fractured...I ask for the report while at my MO's office and read it in her presence so I can ask questions.
Hope everyone is doing well. I think of you often and pray for us always.
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Hey, all: It's been a while. I had targeted radiation done to a 1.2 cm spot on my back rib. It was 5 shots of radiation. The pain of that spot on the bone went away. The radiation was done Nov 2015. Now 2 months or so ago, the area hurts again but not sure if it's just muscle pain or a growing spot. I told my onc but she still wants to wait until end of July 2016 to scan me. I hate this waiting game. Anyone else have an experience where a once radiated bone became sore and developed a few sore muscles. I am very prone to stress living in my back and getting tight, sometimes spasming muscles.
Thanks all in advance.
Susan
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LindaE- You are always on top of thing, glad you will bringing that up to your MO.
Txmom- Glad to read the liver spot went away- I have a meeting with my MO and she discuses with me where we are at. Which has been healing and stable. At the end of the visit she gives me a hard copy of the scan reports. I then read things that make me squirm that she never even brought up. Out comes google and I realize that its the radiologist job to report everything. Even one of my x-rays scans reported patient has gas.
grigtgirl- I had a lytic lesion to my ribs and it caused ribs to fracture so that is the only pain I ever had there that I call pain. What I do have now from time to time is a tight burning feeling.. it goes away and it depends how active I am. If I press on the area that feels this way nothing hurts at all. I think letrzole plays a big role in this too. Stress is our worst enemy so important to work on eliminating that. Also, I like to follow the 2-3 week rule.. which is.. is the area that hurts getting worse or staying the same? Does taking advil help?
Carol
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Carol: Thank you so much for voice of reason. It's not really getting worse, just kind of coming and going. I am getting married in July, and even though the wedding is very simple, it's still stressful. After that it'll be about figuring out where to live, another stress. I wish I could live in a comfortable bubble and fed bon bons all the time. That would be lovely. :-)
Susan
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Carol, that's so funny. Nothing is private anymore.
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gritgirl,
Very good to to see you here! Congrats on your upcoming marriage. Yes, waiting is torture but hopefully, the pain will be nothing of consequence. Breathe deeply and enjoy your wedding
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Z you sure put a smile on my face. I worked hrs to put that together, your are right. I am definitely putting my emotions out of the way. Somewhat. I just hope the dam does not break unexpectedly. My family looks towards me to check on which way the stream should flow, so to keep everyone's sanity, I gotta be a tower.
Lindalou thx so much, very interesting. Soft tissue? Would that be the liver? Also, D has lesions on the left side that has been growing, they say "it's only soft tissues, there are no organs there" mesenteric they call it. Maybe they would be able to take it from there. But that mesenteric thingy, it's been a misery bcs it keeps getting larger.
Hey Txmom you and I. I was far behind too. Glad to see you are doing well.
Dee so good to see your excitement. Thx for sharing
LindaEgood attitude. Be prepared.
Susan guide us to the bubble!! Aww, that's what I am looking for. And bon bons!!!
Carol that's my motto to the docs. Get with the program, I tell them, how can she have normalcy when they are not organized. So I am kinda really getting fed up with present Onco. Too much work. Another full time job.
Deanna I am getting bummed out, I reread something you wrote to me awhile back, about all the zingers being taken together, maybe too much. I wonder if that had an effect for the liver spots to come out??
Waiting to hear about the new appointment. I did tell D today about the liver spots, she was like What THE…………., freaking unbelieveable. She wants out of this place. Well, can't be homeless. So we gotta first see if other doc and Center is amenable to her, and what their plan is. And then we could decide. Current Onco also wants to meet, like tomorrow, well if we get the other appointment, so this guy waits on line. Gonna go for the new opinion first.
Terre well how are you?
Jensgotthis how are things coming along with you?
Great thoughts to all
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Hi Momallthetime - it's really good to see you here the past few days and I am in awe of all you do with Dani and with all of us. I'm holding her in my thoughts and also you - and hoping you are taking good care of yourself. You are clearly the lynch pin in your family and it's so easy to put oneself last on the list while caring for everyone else. I have a lot of practice with that myself lol.
I'm doing pretty well overall. I had a unilateral MX on May 25 and my recovery has been strong. I'm starting rads to the breast area in the next few days. I'm really excited to be seeing a doctor on tuesday who is going to customize a supplement plan to help bolster my immune system since I did chemo. This is quite a ride.
My son turns seven on Thursday and it's been so fun to have time off to really spend time with him and get ready to do things like make the cupcakes for all the people coming. It's crazy - We had a limit of 10 kids coming since it's at a rock climbing gym, and somehow we have 35 attendees when you factor in their parents and a few younger siblings. It's going to be so much fun! Here's a picture of my little guy on his last day of 1st grade.
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Jen
Your son is just adorable! If/ when you ever have a down moment just look at his face and that should turn everything around. I'm glad you're enjoying being home to do things with him Please make sure you don't overdo since your mx was pretty recent!
Momal- you are truly the center of your family. Dani is so blessed to have you. Please make sure to take care of yourself! Which major cancer center did you decide to take her to? MSKCC?
Susan congrats on your upcoming marriage. Enjoy every moment of the wedding! Don't let the planning stress you out too much!
Bab
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thanks babs and exbrnxgrl for the congrats
momallthetime, i got that gotta be strong thing too. but i also have to cry here and there. i used to have trusted folks i could cry to, but lost one recently to throat cancer. so sad. so gotta find a few folks to add back. sucks.
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Susan congrat on your upcoming wedding, I think that's a first for the bone mets thread at past since I've been around . So exciting.
Jennifer your boy is really adorable. It's funny with my two boys I would look at pics of them at this age and you can see the men they will become. Enjoy every moment. Mine are eighteen now and all they think about is girls..
Momallthetime Dani is so lucky to have you, youare the families rock.
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Hi all!
Love the happiness on this thread right now! Congrats to Susan on her upcoming wedding, we will want pictures please!
Jen, your little boy is adorable, thanks for posting his pic. He looks like you, from your avatar photo.
Carol, the scan results, hilarious, did they really need to report that??
Babs, sorry that Ibrance didn't work for you, I was told Xeloda could be in my future. Hope this works for you.
MomATT, did you go to the appt with onc for Dani? Perhaps another opinion would be helpful. I just had a second opinion, while it was kind of the same, at least it gave a fresh set of eyes to my file and other thoughts on treatment options. Please take some time for yourself, I worry that you do too much. (hugs)
Still haven't heard for sure that I'm in the trial, but now have a CT scan booked for the 30th, bone scan on the 5th. take care all, cheers, dee
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Susan- Congrats on the big day!! How soon? I can't wait to see pics!
Jen- He's adorable.... my grandsons are love bugs! He looks like one too!
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Jen, Your son has your eyes....and you sound good and strong.
Susan, I have had radiation twice to the same area in my thoracic spine and twice to my ribs. Both sessions were 17 doses of SBRT and IMRT. The pain I felt the second time was exactly like the first round so I knew even before the scan to confirm. However, having said that, I am mostly pain free in my ribs and glad I had the second radiation and yes you can have radiation twice to an area but not 3 times.
I met with MO and also clinical trial nurse about NCI MATCH. I do not qualify. The study requires tissue from a tumor not bone tumor as it has to be decalcified. So if anyone has a measurable tumor that is not in the bone this study may work for you. The tumor has to measure 1 cm in size and also samples have to be recent, not from original diagnosis.
Dee, It sure sounds like you qualify for the trial if they are moving forward with scans.
Best to all.....
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Lindalou - Thank you for calling my attention to the NCI trial. I don't qualify because I haven't progressed on a standard first line treatment. (Yay!) But I have the trial in mind as an option if I progress.
Momallthetime - Don't throw out the current onc. All these opinions are useful if only to disagree with. That said, it gave me hope that your daughter was so mad about the scans ... so much healthier to be mad than resigned. It's just wrong that this should be happening.
Jensgotthis - cute kid! So glad you have all those cupcakes to bake and keep your mind off the treatment.
>Z<
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Jen, I love your son's hair! Definitely a beachy-looking kid, and the spitting image of you from what I can tell from your avatar! Thanks for giving me a big smile!
Susan, congratulations on your upcoming wedding! I would love to hear more details and also look forward to photos! Did you know that AmyQ (here) is a semi-retired (?) destination wedding planner? I'm sure she'll also be keen to hear more details -- might even be a resource if you still have things to figure out. And I'm so sorry about the loss of your dear friend. That's got to be tough, especially now.
MomATT, I'm anxiously waiting to hear about your next opinion onc! Any update? And I agree with Z's observation about Dani's reaction to her scan results. Tell her we're all feeling p*ssed off for her!
Hi to everyone else today. We're baking here in the desert -- not cupcakes, but ourselves!
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Jen what did you do? A Xerox of yourself?? What a cutie, lucky fellow! So glad you are coming along. Hell on earth, I tell you. Hope you have the right help at home to help you go through this difficult time. Well, the little one will give you the strength you need.
Gritgirl so sorry for your loss. Really terrible. And yes, all I have to do is hear a certain song and voila, I am undone. Just heard Enrique Iglesias, Let me be your hero, aww forget it…I'll start again.
Hey Wendy, miss ya. How are you?? Yep, I am sure you are the rock from that angel in your picture!
Dee counting down the days with you. Yep, definitely working on 2nd and 3rd opinions.
Linda Interesting, she unfortunately qualifies at this time. I will try to talk to the new docs about it, WHEN I get an appointment.
Zar yep, sometimes she kinda says so that's it?? I don't let her go there. All these opinions are useful if only to disagree with . You mean I should listen and…sorry did not understand which way I should read this.
Waiting for current Onco to call and say what magical ideas he's got. ;)And waiting on new docs to respond if and when they would see her.
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It's nice to hear from you all, and thanks for the good wishes. The wedding will be simple and is 2 weeks. My church has a fluid set up so the ceremony, dinner and band will all be in one place, which is good during a hot July in Washington, DC. I'll definitely post pics.
Don't know if you all discussed before, but not long ago Breast Cancer Trials released a clinical search tool for mets. It's kind of handy.
https://www.breastcancertrials.org/BCTIncludes/Avo...
One interesting study is using ultrasound to cut the pain of bone mets.
https://clinicaltrials.gov/ct2/show/NCT00981578
Looks like they have locations in California, Texas, and Virginia.
I'm not on a clinical trial yet, but I sure am ready to go when the need calls. :-)
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Dee. I've been on Xeloda since 1/1 and my TMs went from 248 to 34 as of last month. After a little under 2 months my mets decreased about 40%. I go for scans next Monday on 6/27.I'm hoping they'll be good based upon my TMs. So the answer is yes it's working well for me as of now
Babs
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We sent out all documentation to different doctors for a 2nd opinion and now waiting back. Onco called today, still unsure about doing biopsy or not on the liver, Dani had a blood biopsy done with Guardant360 back in January and NOW he says he looked it over and sees that "the tumor" has a BRCA2 mutation. Hmmm what does that mean? I know she is BRACA1/2 negative, he said it has nothing to do with that, it's the TUMOR that has the mutation NOT her. Ever heard of such a thing?? What is he talking about?? Not her, but the tumor has it. English, please!
And b/c of that he feels the Lynparza would work.(an ovarian cancer drug) with immunotherapy and keep Ibrance and Letrozole and Herceptin. The Letrozole he wanted to change, but when I asked why he did not really know and it seems he will keep it for now. He does not look overly concerned about TWO spots in the liver, but we are, she did not have this 8 wks ago, and after a few years with bone mets, a new beast appears and she had mets to a major organ. I don't get his "not so worry" tune. These things have a tendency to multiply, that's for sure!
Would love to hear if someone knows of such a thing about what he said, gonna try different threads also, hope someone makes sense of this.
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Hi all!
Finally finding out a little bit of information. Got the call for a CT today, is it going to be at the hospital that is 20 minutes away, oh no, we must go to one that is 3 hours each way & then drive home on a holiday Thursday night (Friday is Canada Day, like the 4th of July) I'm tired from this trial already!
I won't actually find out if I qualify until I've done all these scans & labs & had another appt in Vancouver with the trial Dr then they will let me know on the 11th of July.
Babs, that's wonderful about your TM's & mets shrinkage. I'll be thinking good thoughts for you on the 27th!
cheers, dee
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Hi ladies,
I introduced myself on this thread a while back but as I'm only new I'm not sure if I have anything helpful to add. I delight when I hear you guys have stable scans and feel inspired when people rally around with helpful suggestions for members who have had bad news, have been following the thread with interest. Jen your son is absolutely adorable, couldn't help but smile at that happy face.
So where I am at the moment. Have mets to pelvis and fumer which were radiated end of April. Only feel the odd twinge now and then. Before I had time to start zoladex to shut my ovaries down I had a scan which showed spot on my spine and sternum. He said they were tiny and wouldn't yet show up on other types of scans. Got my zoladex which didn't work first cycle therefore making Arimidex useless. Had a mini breakdown when I got my period knowing my superhuman ovaries were pumping estrogen around my body (I'm 40) feeding those new mets. Second go it seems to be working and levels look low according to blood tests. Am due a scan tomorrow and meet Onc on Monday. He told me mets were slow moving so I'm understandably worried there was spread so soon. Onc mentioned chemo at one point so very scared to do all that again, was hoping to use as many hormones as possible so I can have as much normality for my 5 year old. We are waiting on approval for ibrance in UK. I do feel achy from Arimidex. My hemogloblin is sitting low so I think that makes me anemic. Very breathless when I walking fast or uphill and get tired easily. Can this only be helped through diet? My diet is very good and eating lots of iron rich food, last bloods showed slight improvement. Sorry for the essay. Just worried as don't think one month of arimidex technically working will be enough to slow this down.
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momallthetime. That is actually good news. Tumors can have BRCA mutations and offers another target to hit. Here's a good article by Elaine Scatter on the drug. And immunotherapy? Wonderful
http://www.forbes.com/sites/elaineschattner/2015/0...
I came into mets with a liver that was covered. I am HER2 + and targeted therapy has been keeping things going for now. Knock on wood
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Susan wow this is so freaking interesting. His delivery was difficult to understand so i was kinda leaning negatively towards his ideas, but now I see there is something to consider for sure. Wonderful to know that you are doing fine. And no rads? Did you do a biopsy specific in the liver? Btw, how can we know if the BRCA is actually driving her tumor - especially if brca was not seen by foundation 1 (biopsy from the hip) a year before, and only seen by guardant 360 (blood).
Dee cheering for you. Must be hard all this wait.And this is quite a trip.
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