Bone Mets Thread
Comments
-
I don't think it's a mistake Deanna, I read one of the shares & it does say that Carla passed on Dec 9th. She should be added to the list of Angels. So sad.
0 -
Deanna,
I'm glad you did your detective work, and though it's very sad, I do think you are right. She wasn't doing well the last time we heard from her. So sad.
0 -
Tracy, I am happy for your good news. Here is a WOOHOO for you.
Daughter, it is good to hear that your mom is responding to treatment and feeling better. You have a lot to think about after the genetics appointment. I am sure that you feel like you should make a decision soon, but don't rush into anything. You have some time although I am sure you just want to get things done asap. Give yourself enough time to digest all the information. Do more research. After some time, reevaluate, then make a decision.
Deanna, Thank you for posting the news about Freebird. No one likes to hear that type of news, but it is best for us to know. I wish peace for her family and friends.
Lynne
0 -
Deanna,
Sadly, I do think that Carla has passed. Not sure,myself, how to confirm beyond what you've already uncovered. I am glad you chose to let us know as I think it's very important to acknowledge her passing and honor her memory
0 -
Deanna, thank you for posting the news about Carla, as Caryn said I'm not sure either how to confirm beyond what you've found out. I do believe it is her though and this makes me very sad. I remember one of the last pictures she posted of herself, she had such a beautiful smile!
0 -
Regarding Freebird, the photos are of her, matching her avatar & for those not on FB, it is her real name & Freebird on her page and it has been reposted that she passed away on Dec 9th through her FB friends. Along with an obit which is her name & place of residence. I would rather err on the side of us remembering her than to wait for confirmation from her family which may never come.
0 -
Dee, thank you so much for looking into it further. I am not on FB so I couldn't do a search. I can't believe she was taken from us so soon, I'm very sad tonight.
0 -
Yes, it's very sad news, I hated to look for confirmation, but felt that we should check, Thanks to Deanna for thinking of looking on FB, which I didn't think of till she posted it. This comes not long after my friend Susan's passing & I sick about losing people to cancer....
Dee (edited to add the following)This is from FB
Sharing...sisters of the wind...my heart hurts for a special sister who has been battling, this nasty C disease! Living, Laughing and Loving her family and riding with loving friends! Please keep her in your prayers today! Update: our Open Road Girl Carla passed over to ride forever, this morning... "
0 -
I'm doubly sad that no one wrote a proper obit for her. I find that very upsetting. I was planning to make an end of the year donation to BCO, and I will now do it in her honor. Just thought I'd mention it, in case anyone else might want to do the same.
0 -
Very sad news. Way too young and quick. Carla had a beautiful smile indeed. I hope she passed peacefully and surrounded by her loved ones.
0 -
Such sad news about Carla. I too hope she had a peaceful passing. Dee, thanks for sharing the FB post and Deanna for letting us know.
0 -
just back from onc. It's about a three hour drive each way. Had the pet and cried throughout that and my appt. Pet was much improved from June. Which now has onc perplexed as to why my red blood counts are low. He said he anticipated increased activity and it's not the case. I raised the radiation and rod in femur from August/sept., but he doesn't think that's it. So he's researching. I think my diet may be a factor. I've tried to be macrobiotic and vegan, and find I'm eating very little because I'm so food confused. I'm still on faslodex and zometa though he'd like to use Ibrance. He told me not to freak out if he changes my protocol. The whole office knows I'm a total weenie.
Between pet and appt., dh and I found a beautiful church and a priest prayed with us and gave me the anointing of the sick. Yup, I cried through that too.
Before I sign off to go to bed, his nurse told me that they have a met sister who was first dx in either 1973 or 1977 with mets. She's now in her 70s and still getting treated. The nurse felt her attitude (which is pretty feisty as in cancer you picked the wrong b***itch) has been a great aid.
Good night all.
0 -
Beautiful idea, Deanna. So sad. She fought such a hard fight and it's damn unfair that she's gone.
0 -
This is a sad day thank you Deanna and Dee for confirming this terrible news, may she rest in peace. This is like so muc else so unfair.
0 -
Rachel, it is very good news that the pet scan shows improvement. I am very happy for you especially since you were so worried. It sounds like you could be right about your diet. Unless you include enough of the right foods, it can be difficult to keep your red count up while maintaining a vegan diet. Have you met with a nutritionist who can give you some good advice? It can be hard to figure it all out by yourself. Don't worry about the crying. We have all been there, and I have no doubt what-so-ever that your onc and staff have seen many people cry in their office. This is not an easy road to be on. I broke down in front of my breast surgeon recently. We can be emotional wrecks sometimes, but you are not alone. Your low red count is probably sapping your energy. That combined with the fact that you aren't eating much is most likely making you weaker and tired and that makes it more difficult to cope with what is going on. You have been through a lot in the past six months. Give yourself some credit, you are not a weenie. I will include you in my prayers and hope you feel stronger soon.
Hugs, Lynne
0 -
Lynne, Does your dh have results from the MRI yesterday? Hoping he gets a plan in place soon and able to more forward. My dh's PSA came back zero on Thursday, which is where we want it after prostate cancer surgery. He is almost 2 years out now.
Rachel, Sounds like you are in a better place now. A nutritionist can help you sort out what is best for you and give you tips for eating to raise your red count.
0 -
Rachel - that's excellent that your Pet showed improvement! But yes, you need a nutritionist. Perhaps eating small portions at a time. And we've all been there crying and having little breakdowns.
Lindalou - Great news! Congrats to hd.
Terre - enjoying your new house?
Wishing all a good week-end!
0 -
Lindalou, That is great news about your DH. It must be such a relief. WOOHOO! My husband's MRI showed that the tumor thrombus is still small/low enough in the vena cava to remove it without needing a heart bypass machine, so that is good news. It also showed that the renal veins appear sufficient for each side of the horseshoe kidney so that the left side that will remain after surgery should be able to function. This is also good news although we were told this will be very complex surgery since it is extremely rare to have the combination of tumor thrombus and horseshoe kidney. Surgery is scheduled for 7:30 Monday morning at Brigham and Women's. Since he has to be there at 5:30, we will stay in Boston Sunday night, and I will remain there throughout his stay. We have a great deal of confidence in the urologist who will do the nephrectomy and repair the remaining portion of the kidney structure as well as the vascular surgeon who will remove the tumor thrombus and take care of any issues with renal veins. The vascular surgeon is the director of the trauma unit at B&W. I am very nervous, but DH and I just want to get this done. We are eager to kick kidney cancer to the curb and start the new year without it.
Lynne
0 -
To my dear MBC sisters. This has been the longest and most harrowing week of mine and DH life!! We went through every test imaginable from lumbar spinal tap to bP every 15 minutes to getting weight everyday!! I definetly know my weight LOL
Here is the news: 1. Skull BONE mets NOT brain mets 2. Spinal fluid cytology negative, Thank you G-d. 3. Whole head beam reds start, will lose hair 😢, but I am still here!!! That is the wrap up. It is totally the best we could hope for. Tx plan in order, Xeloda, rads and Decadron
And for the good news, my husband booked a 7 day cruise to the Carribbean Suite leaving tomorrow!!!!⚓️⚓️⚓️
Living in Ft. Lauderdale we have lots of ships at our disposal. Off we go into the Wild Blue Yonder🚣
Again, thank you for being a friend. The love and support I received was insurmountable. I have been following along with all of you tossing, wishes, smiles, hugs and cheers as fast as I could.
Love all around xxx 💋💋💋 🙏 😍 To all who celebrate, Merry Christmas and a Shining, BRIGHT days ahead!
Myra.
0 -
Myra, WOOHOO! What wonderful news. I am happy that you received such great news now so you can enjoy your cruise. Have a wonderful time. I will keep you in my thoughts and prayers.
Lynne
0 -
Lyne - sounds like an excellent surgeon! You both will be in my thoughts and prayers. Don't hesitate to come here for support and I hope you will be able to keep us informed, if you can. Sending you strength, love and HUGS!
Myra - Can't tell you how happy I am for you! What a week! Have a wonderful cruise!
0 -
Myra that's great news the scary part is behind you now! Healing is next and a cruise will definitely help with that, what a guy you have there. Enjoy yourself I will be thinking of you as I go out in the next Vancouver downpour lol.
Wendy
0 -
Myra,
Enjoy your cruise. Staring out at the vast ocean is very relaxing and healing for me. I hope it is for you too!
Enjoy a peaceful weekend ladies. Friday was my last day of school, so I am planning a low key break. I have a wedding to go to tomorrow, but after that, just puttering around the house, sleeping in, hanging out with my dd's and granddaughter and trying not to spend too much money on the coming grandson. I do have a cold, but that seems manageable, given that I'm off for two weeks
0 -
Hi everyone,
Thank you so much for sharing all of your experiences and stories so lovingly with one another. I was given a bone scan yesterday for pain I have been having in my sternum and ribs.
I haven't gotten the full report but one line I did see said, no signs of (can't remember the name) cancer. I assume it was bone cancer.
I know it is really hard for me to trust my body anymore but one of the things that I was struck by when reading up on bone metasticis is that it often isn't first found on bone scans but rather PET scans.
But, my oncologyst wouldn't order a PET until I first had a bone scan. Has that been any of your experience or should I just take a breath and relax and feel like I have pursued the pain and all is good.
Mostly first hand experience is what I want to hear about regarding cancer spreading to the bones and how helpful bone scans were in diagnosis.
Thanks and you are all now in my thoughts and prayers. It never ceases to amaze me the power of coming together with other woman who share their experience, strength and hope as we go through this helps.
Take care,
Julieho
0 -
julieho,
I'm glad your bone scan turned out well. Were you worried about bone mets or bone cancer? These are two very different things, bone cancer being a new primary, bone mets being a metastasis of breast cancer. My bone met was discovered by PET (done for non-bc reasons!) and confirmed by biopsy. So, I can't speak to the efficacy of bone scans. Have you checked out this thread?
https://community.breastcancer.org/forum/8/topics/...
0 -
Hi all,
I'm reading but not posting much because I keep falling so far behind. Rachel - that's really good news. Very happy for you.
Lynne - will be holding a thought and prayer for you and your DH on Monday. Sounds scary but also like better news than originally thought.
Myra - seems bizarre and wrong to say "hooray - only a scull met!" but..hooray! And very happy for your cruise! I went on a jazz cruise between my lumpectomy and starting radiation when I was Stage I and it was awesome. Put me in a good space to start radiation.
Wendy - I feel your rain pain. We had sunshine for two days here!!! Epic! Keep in mind that, at least in theory, it's summer here. Raining again today. Oh well.
Caryn - enjoy your break!
Has anyone heard from Dune? Annie and Amy have been quiet too. As have several others.
Our new house is fantastic if for no other reason than no landlord. We harvested a bunch of peas, and if it stops raining, will harvest beans today. I had an orange from one of our trees yesterday; it was sticky goodness galore. And the plums are ripe. So we have a lot of fruit to pick! And we're over-run with eggs. So we give a lot of them away. DH figured out the riding mower and got 1/3 of the section mowed. Then the rain came again. So the grass is quite tall in the back 2/3. And the inside looks a bit like a rubbish tip with boxes and chaos. Two of the "kittens" (my 9 month old foster failures) have decided that shredding paper towels is a really fun thing to do. And newspapers! Just in case it didn't look chaotic enough.
I've been doing a lot of kitten rescue stuff on the weekends, and have been slack on unpacking the house. And I got an "emergency" call from a client on Friday - he wants me in Auckland first thing tomorrow (Monday) morning, through Thursday. Will get home about 9 pm Christmas Eve. Was/Am hoping for a break between Christmas and New Years, but client may want me back in Auckland. Fingers crossed he doesn't. So, I'm off to do some unpacking/organising, and then hopefully picking beans this afternoon!Sending hugs to all...sorry not to mention everyone by name, but please know you're in my heart and thoughts.
Terre
0 -
Myra, so happy to hear your good news! Now go and enjoy yourself on that cruise! You certainly deserve it
0 -
Julieho, I only get bone scans, no PET scans. I've heard that many insurance carriers do not approve PET over bone scans for bone mets as PET scans are more expensive. I'm not positive on this though, I've just read about it.
Myra, so glad for your good news. Hope your cruise is fantastic.
Love and hugs to everyone.
0 -
Bosco19. Thanks for sharing good news too & congrats on seeing son's acceptance. Hawaii should be awesome & I agree, therapeutic.
My Hubby & I r going to NYC News yrs Eve, he wanted to surprise me, but decided he better run it across me, which was a good decision, I hate surprises. Now I have to get healthy enough to go & enjoy the trip. Putting up our Christmas tree made me inhale dust & God knows what else. Have had laryngitis & cough for week now.Dr wanted to have me admitted, but I said no thank u.
Lynne, I liked your post , "ugly stepsisters" that is us. Who ever oversees this site, we need a "like" option, like that on FB. Hope everyone is having a decent week-end, I am in pain, hurt my back, not sure if I have coughed too hard or what. But on positive note my youngest is competing in wrestling tournament & is in Finals tonight. I am grateful for Face time, so I could see his matches live. Su
0 -
Hello to all,
I just went to my oncologist and he said that I was looking good. He was concerned for me at my last check up I guess because he could see that I was in pain. I think that the Ibrance together with the Femara and Zometa are working. I go back to see him in January. I'm so happy my check up went well because I was having anxiety on the way there. I'm excited because my son is coming home this Tuesday for winter break. I think it will be good times. We plan to go to see Star Wars. It's been ages since I've been to the movies, I just usually watch shows on Hulu now. I hope everyone has a great time over the holidays which includes everyone celebrating different traditions.
0
