Bone Mets Thread
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Chelle, that's great news! Never feel bad about sharing the good stuff :-)
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Debie, I wish I knew more, but my lesions were lytic. I have to say that I think it sucks that we have to spend so much time interpreting reports...why can't someone in the system go over the report and the scans and give it to us straight?
Let us know if you get more clarification from your MO
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Chelle, Great news for you! I am also stable with inactive lesions!
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Chelle. Great news. Never feel bad about sharing good news with us. We need the good news to give us all hope!!!! When my lesions were growing hearing of others success gave me the hope that eventually it could be me getting good reports and it did finally happen! Do a virtual happy dance with Lynwood!!!
Debie wish I could help you but I'm not that knowledgeable
Bab
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Debie- I haves a similar situation as you- ILC and the areas of your mets are where mine are. I assume you had a bone scan(not pet) and a ct scan- What is the time difference from your last scans till this scan in regards to Ibrance?
I will give you an example: My first bone scan ever was in July 2015- I went untreated from July to November (bad MO) - Finally in October she ordered a CT/pet scan that showed where all the cancer was. I switched MO after the first of this year, but was put on Ibrance/let in November. In February new MO at Dana Farber wanted an updated bone scan (they do not use pet scans) and my bone scan was much worse than it was in July. But that was because I went without treatment from July - Nov. Since I have started Ibrance/Let I have been stable without any new areas. I also had rads to some of the areas so they are healed, but Slow healing in my thoracic spine and my TM's go up a tad bit each time. Makes me nervous, but Ibrance is slow going.
Hugs Carol
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Chelle- WAHOO... Our goal is that someday soon this thread only reports great news because we will be that much closer to a cure.
Carol
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Babs, Sorry X is giving you some discomfort. I ache terribly in the areas where my mets are but hoping they are healing pains. I sometimes think the letrozole is worse than the Ibrance. My bones feel old .. but I celebrate always with positive thinking-
Carol
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Chelle - I am thrilled to read your results! Doing a happy dance with you.
Debie - those reports are hard to decipher. I spent so many hours trying to figure them out to find out I misread them. Glad you're seeing your MO on Monday to go through it. He/she seems to be on top of things. Keep us posted.
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Chelle, A big WOOHOO for stability and inactive cancer! I always enjoy hearing good news. You were not at all insensitive. We need to discuss bad news and help each other through it, but we also need to hear the good stuff. I will celebrate for you.
Debie, I didn't think that your post was jumbled at all. Maybe my mind is as jumbled as yours so it seemed normal to me? Lol. I wish those darn reports came with a patient-friendly summary that clearly states, "hey, this is the good news and this is why it's so good, and this is the okay news and this is what it means, and this is the part that might or might not be of concern and here is exactly what it means and why it could be concerning." I also wish that the experience that someone on this thread (I apologize for not remembering who) recently reported would become standard practice. That person said that the radiologist meets with the patient right after the scan to give a preliminary report. Wouldn't that be great? Did your have first scans right before you began Ibrance/ letrozole? Has it only been a few month since you began treatment? It usually takes a while to see results, especially for bone mets. I am glad you didn't go off the deep end. It sound like there was some good news in the report. You will have more clarity on everything after you meet with your onc on Monday. Listen to his reasons for recommending Herceptin. Ask for pros and cons. If, after discussing it, it feels right to you, go for it. You continue to live life to the fullest, and that is important. You feel good. It sounds like your energy level is high because you are one busy lady. I admire you for all that.
Momal, You are definitely overdoing it again, or still. I know why you are doing it, but I, like everyone else here, am worried about you. Please, please, take care of yourself. I also agree that it is time for another opinion. If you don't want to initiate contact with DF, ask the onc to enter a referral. My husband's PCP told us that it is an extremely easy and quick process for a doctor to follow. It can be done online. The response time is fast, too. Your onc should not have issues with your request, in fact, he should encourage it. You need to get Dani to a major cancer center to get answers.
Lynne
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Hi all!
Chelle, what great news, don't ever feel bad about posting good news! We celebrate the good & commiserate the not so good.
Debie, I'm sorry that I have no insight for you, but sounds like you may get some more answers from your MO. good luck & fingers crossed for you.
Still waiting to hear if I've been accepted into the trial. Hate, hate, hate the waiting.
I've been thinking about all this traveling that I'm going to have to be doing & it occurred to DH & I that some of our friends have kind of dropped out of our life. We're still fun, we don't talk about cancer unless they specifically ask about what's going on with me, but it's not the same anymore. But.... we've had some people who we have hardly known in the past, really step up.
When we went to Vancouver, they insisted that we stay at their house even though they were in the midst of a huge reno. They didn't want us spending $$ on a hotel. We helped them clean up before the painters came the next morning, cooked a fabulous dinner in their little tiny make shift kitchen, had so much fun, laughed til we almost pee'd ourselves. I guess I am mourning our old friends, but celebrating some new ones.
I'm still going to try to get caught up on this thread, but I must get out in the garden. Not just for my sanity & get out of my head, but the weeds are threatening to take over! take care all, cheers, dee
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Chelle that's really terrific news! What exactly are you on now? So happy for you. And yes, I listen to them, trust me. I am considering UPA, and still waiting to hear what doc says about the plan going forward.
Debie, your scan looks very similar to Dani's. It was almost comical when we read it, some stability, some larger, some new, some less. Crazy stuff. Her Onco doesn't get riled up at all, so that's the other spectrum. And BTW, Dani also was first HER2- and then she had 2 biopsies and it showed it changed to HER2+ with weak PR, but ER+ still.
She is now on Ibrance/Letrozole/Tykerb/Herceptin. I think her case is very complicated, she never really had a break. But we are still trying.
Btw, so far I told my sil, and told Dani about the growth in the skull area, she should digest this first. And then I'll tell her about the liver. As is we have to decide what to do next with that specific lesion, you could see it on the head.
Thank you for everyone, you guys are the best.
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Momatt- Did Dani's numbness in her chin area ever resolve? Did they ever contribute that to the skull mets? I wanted to share that One of my friends was just diagnosed with Stage 3 lots of node involvement and is going to UPA- She had the surgery on Monday and will see MO soon to discuss treatment. She also is getting a second opinion from Dana on treatment.
Carol
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ChelleG - Congratulations. My tumors all shrinking on Ibrance. Many of us are doing well. Now we just have to get Dani, Debi and the rest of the folks through their transition to the right treatment ...
Debi - Ibrance does take on average 4 months to have an objective response. All my tumors in the liver and breast shrunk in two months but the possible bone met in my sternum did not respond. Didn't get better or worse. The fact that the lesion in your lung is completely gone is amazing. Overall the CT scan was not bad.
Not only are the reports difficult to interpret, but the images are hard to interpret for the radiologists and they have a lot of intrinsic uncertainty. Take those scan reports with a grain of salt ... and a glass of wine.
It sounds like you have good options to deal with the new lesions in the bone if you choose to go there. I do think giving Ibrance some time to work is an option. The live that you are living is your best medicine. Don't give that up.
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Dee I found that as well don't people know it's not catching?
Carol I have to say to you that you are an absolute darling, you are always upbeat and very sweet I just wanted you to know that from me😊
Chelle you know how happy you made me😄
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Wendy, I think they don't know what to talk about. If they complain about something, they are quick to say "oh but it's nothing compared to what you're going through". They're right, but everyone is allowed to b*tch about little things... Oh well. Sad to lose friends.
I had wanted to meet up with you on Tuesday but after my appt we just ran for the ferry. If I get on this trial I will certainly want to meet up. cheers, de
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Dee, It was wonderful that your friends in Vancouver insisted that you stay at their house. The support of friends is invaluable, especially during stressful times like this week has been for you. You and your DH sound like ideal house guests. I am sure they enjoyed having you there just as much as you enjoyed being there. Now that I know that you will clean up and cook, you MUST come here sometime. While you and your DH are cooking, cleaning, and pulling weeds, I will just sit and relax. Seriously, it is sad that some friends pull away when we need them most. Maybe our illness reminds them of how fragile their own health can be. Maybe they are afraid to see us decline so they turn away while we are still healthy. Maybe they are just selfish, cold-hearted,and cruel. I have come to the conclusion that the loss is theirs, not ours. We are great, strong, vibrant, interesting women, and they are not. Do you know how long it will be before you hear if you are accepted into the trial? I hope it is soon.
((Hugs))),
Lynne
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I've found that most friends have been there for me and even some casual acquaintances have too!! Only a few have become distant. Since our time on this earth is more finite than others, I decided to forget those friends. I spend more time with those that are there for me and also my family-who means the world to me! I must say that I've emotionally divorced myself from my son since he's been the biggest disappointment during this crazy journey. We need to spend our time with those we love and that love us back!
Babs
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I am sorry to bug you all, but something is on my mind, and I have to get it out. The results of an X-ray taken before my kidney stent was removed was posted to the patient portal today. My urologist had already shown me the X-Ray and walked me through the urology results, so there were no surprises there. There was, however, one notation in the report that bothered me. I must first tell you that the X-ray was taken at a different location than all my other scans and X-rays. For that reason, the radiologist had nothing to compare this to and no knowledge of my MBC. Also, I know that comparing findings from X-rays with results from bone scans and CT scans is apples to oranges. Anyway, the troublesome notation said that there was evidence of Paget's disease of the innominate bones and sacrum. Of course, I know it is not Paget's disease, so that doesn't bother me. What does concern me is that previous scans' reports did not mention mets in innominate bones and sacrum. Hmmm. Were they there and not as prominent as the many other locations mentioned so not documented? Are these new mets? I feel that scan reports are never truly complete and that bugs me. I will add this to my ever growing list of questions for my onc appointment later this month.scan. It will be a lengthly visit.
Thanks for listening. If you chose to skim over this and ignore it, that is perfectly okay.
Good night everyone.
Lynne
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Lynne, I find that each report varies, depending upon who reads it and who gives their interpretation to us. It gets very confusing and frustrating to us, the patient. At one point I was told over the phone that I was stable and then got my CT scan results to find that 2 mets had increased in size. Not what I would call stable at all! So much depends upon interpretation too. Yes, you should have a long visit with your onc. As Desi Arnez would say to your onc "you've got some splaining to do!"
Babs
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Chelle, terrific news! As others have said, sharing good news gives us hope so please do not hesitate.
Lynne, I'm sorry for the confusion and possible concerning news. I hope you can get it clarified soon and that it turns out to be something smallish or a treatable bump in the road.
Babs, divorcing your son must have been terribly difficult and very painful. I hope he changes his ways and soon. Regret after a loved one passes can never heal. I know because my father has lived with regret for over 45 years. He was an absolute ass to his oldest son on Mothers Day in 1978 and 4 months later, my brother at the age of 22 years, died in a horrific car crash while in the Navy. I am not saying you are wrong, I just hope your son wakes up to the error of his ways so he isn't the one to live with regret.
Dee, Linda, mom, Deanna, Wendy, Carol, Zaravoka, milaandra, Patty, Stephanie, Caryn and everyone who's posted here recently, I'm thinking about you and I hope you are enjoying June.
Much love,
Amy
PS my latest adventure; driving cross country with DD1 and her 4 children age 22 months, 3 years, 5 Years and 7 years from Minneapolis to Yellowstone. We are currently in Deadwood where we hiked 3/4 of a mile and 250 feet down in a cave...we also slueshed for gemstones and fossils. Up next, horseback riding and hopefully fly fishing.
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Lynne, I'll be right over to cook, clean & get all those pesky weeds out of your garden while you sun your pretty 'lil self in the garden!! LOL!! I don't have an answer for you about the xray. But I'm sure you'll get some answers. I am hopefully finding out tomorrow if I'm on the trial. Mixed feelings, new drug, new SE's.... we'll see.
Babs, that's too bad about your son, I hope he grows up soon. It must be so hard on you, but obviously you needed that separation. ((hugs)) You are always so helpful to everyone on this thread, hard to believe that anything bad other than the darn "C" could be bad in your life.
Amy, that is an adventure, wow! 4 kiddos under 8.... I can't even imagine. Hope you're having the time of your life.
Good night & sweet dreams all, I'm off to dreamland, cheers, dee
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Good Morning All,
Amy, sure sounds like you are having a great time. Haven't been to Yellowstone since my 20's.
Congrats to Lynnwood and Chelle.
Lynne, Babs said it the best.
Dee, hope you hear today about your trial qualification.
Below is the NCI-Match trial that is now back up and running. You can find more detailed info at www.cancer.gov and type in EAY 131 Match trial. I will be speaking to my MO about it on Tuesday. I spoke to my clinical trial nurse and she said the tumor biopsies need to be from soft tissue not bone due to decalcification of sample. The short explanation was from my hospital's site.
EAY-131 - Match Trial - A New Precision Medicine Trial Co-developed by the NCI and ECOG-ACRIN. 20 Different Disease Types - Tumor Testing Identify Mutations, Amplifications, and Translocations in on the Genetic Pathways of Interest Name of Trial: EAY131 (NCI MATCH TRIAL) - A new Precision Medicine Trial co-developed by the NCI and ECOG-ACRIN. The MATCH Trial takes into account individual differences in people's genes to identify mutations, amplifications and translocations in one of the genetic pathways of interest. Study inclusion is regardless of tumor type and patients are assigned to a pre-determined relevant agent or agent combination. NCI-MATCH will incorporate more than 20 different study drugs or drug combinations.
Linda
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Hi All
Chelle and Lynnwood so good to hear your wonderful news!
Dee, Hope you hear about your qualification today.
Lynne, Babs said it best
The NCI trial called EAY131 NCI MATCH ( Molecular Analysis for Therapy Choice) is back up and running. I just posted it for you to read but an entirely different one came up so I deleted it. I am talking to my MO about it Tuesday. My clinical trial nurse said tumor samples for testing have to be soft tissue not bone. I will get all that clarified and let you all know. The trial will determine whether matching certain drugs or drug combinations will effectively treat individual cancers from our own tumor samples. If I can get the link to work, I'll post it.
Good weekend to all......
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good morning all
Chelle congrats on the good news. Anyone's good news makes me smile.
Amy wow! What an awesome trip. I love Yellowstone. What a pack of memories you all will have.
Lynn, sorry for your worries. My MO says that each pair of eyes on a scan sees something different. I had a surprise L 2 tumor on a scan that said stable. But my team went back to compare and it had been there all along just very small. So, I still got to say stable. Ps save some wedding for me
Babs I am dealing with disappointing family member as well. It hurts but to move forward and let go of the negative, I do have to truely let go. That you have done this already impressed me.
Linda Lou Thanks for the info. I have a scan next week and meet with mo. I will have your info in my pocket just in case.
Christine and Patty thinking of you and sending thoughts of peace.
Holding everyone in my thoughts today as I weed my garden.
Mary
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Good morning all,
Lynne - I hope you get this clarified soon. Can't help but you got some good opinions from other gals.
Babs - I also divorced a family member. Not an easy thing to do but oh so less stressful.
Amy - I'm impressed!
Lindalou - Thanks for the link. I will certainly look at it.
I'm kind of excited because I found a hospital in Montreal which has the same clinical trial as Dee. It's the same hospital where I had my second opinion shortly after dx. Will speak to my MO about it when I see her in August.
Sending hugs all around.
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Lindalou, that sounds alot like the POG program here. I tried to get on that, but they need 5 tumor samples & they won't take them from bone only. My MO said we have to wait until it's in my liver.... as if it's definite that one day it will be in my liver. Ya, thanks for the positive outlook...
LindaE, That would be so great if you could get on that trial. fingers crossed that it happens.
Hope everyone has a great weekend, summer is officially here on Monday! cheers, dee
ps, still no word on the trial but I'm thinking that if I didn't qualify they would have let me know by now.
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Hello to all, I'm fairly new to the board. I have a question maybe someone can help me out. I was diagnosed with Mets to the upper and lower spine, the hip/ pelvic area and a rib which I cracked and that's how I found out about the bone Mets. My scan also said "to many areas to count" . I'm post menopausal and was put on daily Arimidex and go for a Zometa treatment once a month. I will only have a scan once every six months. Sometimes I feel like this isn't enough. So my question is did anyone of you guys only have this treatment, I'm just so scared they are not doing enough for me .
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Chelle, not sure if I commented on your status here or on another thread earlier, but WooHoo!!! Love hearing that you're stable!!! And kudos to you for your attitude re. the temporary living arrangement. I would love to see photos of your new home's progress in the coming months.
Debie, sorry about the lack of clarity on your scan. Even though we all know that different radiologists see and call out entirely weird things at times, it's very disconcerting when you don't have clear information, and even then it's sometimes hard to trust due to those inherent differences we know about.
Dee, I loved your story about your "new" old friends! And Babs, I'm sad to know that your son hasn't been there for you. I'm so sorry. I think if people aren't very close (emotionally or in proximity) to begin -- like seeing and/or talking to us all the time -- they can be very uncomfortable with the unknown about our situations. They don't know how we're doing, thus they have no idea what they will say if they were to call. Plus, I think when we have mbc, the problems they might be facing sort of pale in comparison -- or they feel like they should -- or they feel guilty about happy news -- so they're reluctant to share their hearts about their lives and you drift apart.
Amy, your adventure makes me smile! ENJOY, and I hope you'll share some photos!
Lindalou, that looks like a really interesting trial! Thanks for the link. And I may have missed an earlier post of yours about your hubby, but I think I saw comments from others congratulating you on his good results, and I just wanted to say it's been on my mind, and I hope this means all is well and is a huge relief to you both!
Speaking of hubbies, Lynne, how is yours doing? Has he been able to put some of the weight he lost back on? Hope so.
Have a great weekend, everyone! We are bracing for a heat wave with excessive heat warnings. Would you believe 122 predicted for Monday?!!! I'm going to think of it as a spa treatment, LOL -- sweating out the bad stuff!
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Tee, welcome to the bone mets thread, you will get lots of support here. The treatment you're getting is pretty much what I get, instead of the zometa, I have pamidronate infusions, but I think they are kind of the same. They don't want to do scans too often because they have to wait for the drug to do it's thing.
If you're having increased pain or other symptoms they will scan more often. I know it seems kind of strange for them not to be doing more, but sounds like your Dr has it under control. Are they going to do scans & tumor markers in September? If you're having bone pain they can do radiation as well. If you have questions don't hesitate to jump right in. cheers, dee
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