Bone Mets Thread
Comments
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Terre you are just as adorable as I imagined , how nice for you both must have been a nice surprise for Valentines.
Jennifer welcome to our little community you will find answers and strength here. Sometimes the only folks for me who "get " it.
Patty I hope you are feeling better this morning I though that you were past this. So frustrating I am thinking of you and wish for you a better day ahead.
So today is my results day. Haven't had a scan or X-ray since July last year so I could be in for all kinds of surprises. Very nervous appointments at four ( they couldn't have made me wait longer I guess) I will let you ladies know the outcome.
Have a great day ladies
Wendy
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right now I'm doing a trial of Keytruda, and just starting having some pain in my legs. I have three more treatments to go and then scans to see if it is working.
Bail
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jensgothis,
So sorry you've joined us, but welcome. I am in northern CA, so can't help with UCLA but have thoughts on your limited bone mets. Although many mo's want to "save" radiation for when you have pain, there is another school of thought. With limited bone mets, some mo's have been treating bone mets with rads to render them inactive (necrotic). I had a bone met to my upper femur but no pain. My RO and mo used rads to kill it off. That was 4 1/2 years ago. I have been NED ever since. I see that your diagnosis line says your tumor was grade 1. Wereyour bone mets biopsied to confirm that they are still grade 1? This often indicates an indolent cancer. Mine was also grade 1, and that was another reason the docs felt rads would be a good way to go. Sorry if this is rambling, but please ask about rads with intent to neutralize the mets, not just for pain relief. Let me know if you have any questions about this. Take care.
Caryn
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Terre, you and Mike look like you were having a great time! So glad you won this lovely weekend to get away from this part of life for a few days! It is nice to put together a face and a name together, too. Hope you meet some cute new kittens this week.
Lynne, hoping your DH improves rapidly so you can be home.
Bosco, praying the meds work well so you can get home soon.
Patty, hope you are able to escape the couch before too long!
Welcome newcomers...sorry you are here! It does get more normal and there are quite a few good protocols to stabilize things.
Crossing my fingers for good scans all around!!
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Hi All,
I had my pet scan this week, breast tumor stable and all spine tumors decreased in size except for t12 and l2 which were radiated and are now gone. I have been on ibrance and letrozole since August.
Marilyn
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Marilyn--Congrats!!
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Wow, what great news, Marilyn! So happy for you!
Love, love, love the photos of you and Mike, Terre! And absolutely love what you wrote! Congratulations, and so glad they chose you and you got to enjoy such a special package! You truly deserve it!
Scans (CT & bone) tomorrow. Any positive and/or calming thoughts you want to send out tomorrow afternoon Pacific time will be very much appreciated! I swear I can feel them when it's happening!
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Caryn,
The biopsy of my bone and the little marrow they also grabbed didn't provide enough cells to make a diagnostic confirmation that it's BC but the head of pathology and my MO both believe it is. So, since there wasn't enough cell we don't have confirmation that the cancer didn't switch up (he said it's a 1% chance) so I think his plan is to wait and see how my next pet scan goes, which we're setting up soon. I'm comfortable and not comfortable with this - I'm comfortable because I don't want to go through the torture of another bone biopsy (it's was a terrible experience as the pain and sedation meds weren't working and I felt it all), and it seems like the chemo is possibly already helping as the PETSCAN pre chemo showed the lesion but the CT we used for the biopsy didn't show it at all. I so appreciate what you offered about rads on these early mets - I will definetely bring it up. I saw an interesting trial out of MDAnderson doing just this.
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Good Morning All!!
Jen, I have had rads to bone mets for pain relief, but my understanding is that one type of met can been radiated to "kill" it and the other type not. I'm sure if I have this wrong someone will let us know. Sorry you have to be here, it does get a bit easier with time, but still hard.
Deanna, I will be there with you in spirit, good luck.
Wendy, Same for you, 4pm, I'll be there in spirit. Please let us know your results....
Marilyn, wonderful news!!
Bail, I hope your pain subsides, have you asked your Dr if there is anything you can do for the pain? I don't remember welcoming you, so welcome!
Aurora, Are you getting some results, I can't remember, but fingers crossed.
Bosco, ((hugs))
Patty, how are you feeling today? Hopefully a bit better.
Best thoughts for everyone else today, Terre, The Linda's!
Ellelou, Kathryn, Caryn, Bluefrog, Annie, Babs, Lynne... oh I'm forgetting some, please forgive me... Cheers, Dee0 -
I forgot the reason that I came to the thread this morning. Canada is finally looking at approval of Ibrance, there were several trials on both sides of the country. Here is the link so you can keep track. cheers, Dee
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Dee,
Thanks for remembering me by name. A welcome acknowledgement 😊. I don't know what type my bone met was, only that it matched my bc to a T, and the rads were successful assassins. I hope Ibrance gets approval swiftly.
Jen,
So sorry the bone biopsy was painful. I can understand why you wouldn't want to do it again. Were the meds IV? Mine were, and they asked me several times, if I was comfortable and pushed more meds the one time I wasn't. No chemo for me BTW, just the rads and Femara. Take care.
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Just posted in the Ibrance thread but also wanted you ladies to know that my CT scan today was stable! Cancer still in bones but nowhere else! On cycle 11 of Ibrance. Don't post much but read every day and learn so much here
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Deanna. Sending you positive thoughts for great results
Marilyn. Such great news!!!! So happy for you
Babs
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Marilyn and Lynwood: hooray!
Deanna: will send good thoughts and my prayers westward.
Wendy: thinking of you.
Mac sends his love, too.
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Marilyn and Lynnwood, so happy to hear your good news! Do something special to celebrate.
Deanna, all my positive mojo is coming your way. I will be there holding your hand in spirit!
Dee, great news about Ibrance possibly getting approval in Canada.
Rachel, you must all be loving Mac, what a nice addition to your beautiful family!
Wendy, thinking of you.
Hugs to all, Annie
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Ladies, i fell so behind due to a mad week, i need to get on board to catch up with everyone, so forgive me.
Dani's foot is much better. Onco is not worried. We were. She was off tx this week bcs of low blood count, starts back tom, and hope to see some difference on next BT.
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Deanne-will be sending you positive thoughts for your scans tomorrow! I hope you get good news.
I met with RO today and have plan in place to start rads on Tuesday. Also had a liter of fluid drained from the lining around lung. None of this is fun. Especially for someone that gets high anxiety from long needles.
Had a good talk with RO today about my emotional fragility. I'm usually so strong,but he put my diagnosis into perspective by saying that I'm now dealing with a chronic disease and there re many treatment options along the way. My sadness and disappointment is starting to subside and hoping that by starting rads I will switch to fighting mode.
So many of you on this board inspire me and it's a comfort to have found a pace to communicate with others going through the same struggles.
I am new and don't know you all, but want you to know that as I'm going through this, I'm thinking of all you cancer fighting women and wish you comfort and strength.
Goodnight,
Susan0 -
So the news was not good. This was my first pet scan and comparing it to my ct from last summer or my bone scan indicated progression. Numerous met were found so the onc says now no curative anything anymore. Im being referred to a radiation oncologist to help with pain management. I'm to get a new bone scan next week because they want to compare apples with apples because apparently a pet scan picks up any and all activity whether it's from arthritis or a cold. If my bone scan gives the same results as last summer than they figure the tamoxifen is still viable if it shows progression as well then I'm to start an armies inhibitor ( I know spelled wrong) and a clinical trial. The tumour in the breast has however shrunk which would indicate that I had all these mets before and they were just not seen on the bone scan.
Dee as a rule Canada does not do pet scans we only have two machines one in Vancouver and one in Toronto kind of mind blowing.
I will continue with the medical MJ because I need to believe in something and it helps me with pain and anxiety . Feeling very sad for my family it's hard to gather the energy to continue the fight but we must. I wish I could have delivered more hopeful news to you all...
Wendy
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Wendy: when you didn't post right away I thought the news might not be ideal. I'm so sorry the PET suggests progression. But it sounds like the bone scan will tell you more definitively. It will be good to have that comparison. Do you also have tumor markers done? Are they reliable for you? You have been so brave and strong for your family through all of this. It's okay to let yourself feel sad and discouraged for as long as you need to--even if it's only here. We are here for you whatever you need. Probably like an original diagnosis, once you have a treatment plan you will start to feel a little better. Holding you in love and prayer.
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Wendy, I am sorry that you did not receive the news you were hoping for, but I think it is important to wait for the bone scan so, as you said, they can compare apples to apples. I have never had a PET scan, but I know things show up much differently than on bone scans.
There is good news here, and I hope you do not lose sight of it. First, the tumor in your breast did shrink. That means that there is regression there, and tx did some good. Second, even if there are news areas of mets, your mets are still confined to your bones. Third, your dr already has a new treatment plan ready, in case you need it.
Don't lose hope. Once you have all the information, you can move forward in whatever direction you need to. There are still many options available to you, and it sounds like your onc is staying on top of things.
I am keeping you in my thoughts and prayers.
Lynne
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Momallthemtime, happy to hear Dani's foot is much better.
Susan, it's good to hear that your sadness is starting to subside and I wish you comfort and strength as you go forward with your treatment.
Wendy, I'm so sorry you didn't get the news you were wanting to hear but I'm still hopeful that once they repeat the bone scan they will see that there are no new areas. It really is important to use the same scanning modality, as you said to compare apples with apples. I don't recall where your initial mets were but it is encouraging that the breast tumor has shrunk. Sending you big hugs!
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Good morning all,
Deanna - will be sending positive thoughts to you today.
Marilyn and Lynnwood - congrats on good results!
Terre - you guys look so happy! glad you enjoyed it.
Wendy, I'm surprised they would use a PET at this point instead of comparing to the same imaging. I would definitely wait for the bone scan before jumping to conclusions, I know easier said than done. But you will have a clearer picture. Breast tumour shrinking is definitely good news. Your medical team has a good plan in place. Good luck with the rads. Having a Pet scan is next to impossible here in Quebec.
Sending hugs all around.
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Oh, Wendy, you must feel so blindsided, but l have also been told that you can"t make comparisons between different scanning modalities, so hoping this initial observation ends up being overly aggressive, as my onc calls it.
I'm in the car -- hubby driving, but still hard to type on phone at 80mph, so more later, but just had to let you know my concern. Hugs.
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Thanks everyone you ladies are my rock. Deana good luck on your scan I am crossing everything for good results. I'm regrouping need to get the bone scan done and treatment going.
Wendy
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Wendy, Just read your news, so sorry to hear. But I'm with others & your Dr. about the bone scan. If the tumor has shrunk perhaps they are getting a different reading on the PET. Do they do TM's on you? Mine are extremely accurate, but I know with others not so much. I think because I have them done at the hospital & always have them read by the same lab is helpful for accuracy.
* edited to add* I recurred on Tamoxifen & was put on the aromatase inhibitor, anastrozole & it has taken me to "very, very stable" these are the radiologists words, so maybe that will help take the gloom off this bad news. Take care, Dee
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I am so far behind! Thanks for the kind words, everyone! We did have a blast!
Marilyn and Lynnewood - congratulations! So happy for you!
Ninja - hi! Welcome!
Wendy - sending hugs. I'd echo what the others said. Also, my oncologist said the AIs work differently from tamoxifen. I had asked him if I could go back on tamoxifen, because of the SEs from Femara, and he said that because they have totally different mechanisms and because I'm stable on Femara, he didn't want to change. But I can only imagine how blindsided you must feel. Glad you're getting a bone scan done.
Deanna - sending good vibes/prayers/thoughts your way.
Momall - glad Dani's foot is better!
Annie, Caryn, Rachel, Linda, Lindalou, Mary, Cristina, Bosco, (brain is fading....), everyone...hugs!
And by popular demand...Here's one of the Kitten Inn photos - the person is a fosterer's daughter. The look on this baby's face is priceless. I'm going to post a bunch of stuff on the cats cats cats page shortly, including a rather funny rescue story.
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Wendy, so sorry the results weren't what you had hoped, but I would agree with Lynne that reduction of the tumor size in the breast shows there have been positive results and the new scans will be a better comparison for you.
Deanna, hoping your scans go well and your scanxiety is minimal! Will be thinking of you this afternoon.
Great news Marilyn and Lynnwood! So glad you received good results!
Thinking of you Bosco and Patty...if wishing could make it so, you would both be pain free and enjoying good times with family and friends right now. Hope some joy comes to you in the next few days to lighten your spirits
I will be offline for most of the next10 days pretending Cancer doesn't exist (except at pill time). Know that you are all in my thoughts and prayers...stay stable and hug those furry friends at every opportunity!
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Happy Friday everyone (probably Saturday for Terre),
I am just popping in to say that my DH and I finally returned home today. YAY! I have forbidden my husband from having any additional complications. Enough is enough. We almost made it out of the hospital yesterday. The nurse was reviewing the discharge instructions with us, and the wheelchair was waiting to take DH to the door. All of a sudden the PA walked in and said that my husband could not leave because the GI team had seen something on the MRI that made it dangerous for him to leave. Early this morning we received the news that all was okay. His gallbladder (that is infected and has a temporary drain) had ruptured. Luckily, his body had encapsulated the site of the rupture and had effectively walled it off, so all is well. The human body can be amazing. The two antibiotics that he has been taking for sepsis will take care of this new issue,too. So here we are, happy as clams sitting in our own home. I will prepare him six small high protein high calorie meals a day as he builds up his strength and gains some of his weight back. He will remain on antibiotics until the infectious disease doctor decides it is safe for him to stop them. When he has recovered sufficiently, the nasty gallbladder will be removed. Hopefully, this is the end of my dh's saga, and I can stop posting about our misery.
Thank you all for helping me through the past eight weeks. Your support has been amazing, and every prayer has been appreciated.
Love to all of you,
Lynne
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Lynne: so happy to hear you are home and have a plan. Hope he is feeling better very soon. Relish in your own bed!
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I'm sorry, but this thread moves too fast for my less that quick brain. May all of you facing scans get the best news possible.
Lynne- Good to hear that your husband is home. He's had quite the rough road so I'm hoping for a smooth recovery from here on in.
Wendy- I echo what others have said. Wait until your bone scan, when you can do a head to head comparison, before you get too worried. There are still many choices if you need to deal with progression.
Terre- What can I say? Those cute kittens would put a smile on anyone's face.
Take care all and have a good weekend.
Caryn
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