Bone Mets Thread
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Patty thinking of you and praying for a quick recovery. So sorry you are back in the hospital. XO
Terre, I hope you have a great week as well. Merry Christmas and Happy Holidays!
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Lynn- thanks for checking in with us when you probably wanted to sleep. I am so glad your husband's surgery went well!! I hope you are resting now.
Patty- I hope you are able to get home for Christmas. This vomiting and diarrhea sucks. Is it the Ibrance? I think you said it was happening before that, so maybe not. Hope you can get this figured out STAT. I'm glad you are posting.
Maybe it's time to call Dune's mother? Whoever has that information, maybe it's Dee? What do you think. Are we be overkill or is it time?
Still waiting to hear from pain management and my onc now, I put in a call to her office this morning. They probably think I'm nuts. I am nuts. Just don't want to run out of those meds.
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cristina. Yes I did have these sme issues before Ibrance. You are sounding better. Anymore thoughts on moving ?
I wouldnt think it could hurt to call dunes mom. Hoping she is taking a break.
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Called Dune and left a message on her home phone saying we are all enquiring about her and would love to hear from Charlene. It sounded like her Mom on the voice mail and I gave her my home phone number and cell phone if she prefers to text me.
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Linda, Thanks for calling Dune, I haven't heard from her & I just saw these posts (being on the westcoast, I feel out of the loop time wise sometimes)
Patty, Hope you are feeling better, are you out of hospital yet?
Hello to everyone else here. Busy day here, but I'll be back later, Cheers, Dee
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dee. Still here. Hoping to go home tomorrow
Lindae. Glad you called dune. Hope you hear something positive soon.
Gi Dr came in and said some blood in stool sample but likely from diahrea. However since I haven't had one and turned 45 this year , we are gonna do a colonoscopy and also a scope down throat to tummy tomorrow. I didn't ask many questions to Dr but thought after he left ugh will I be awake. One nurse said total sedation I won't remember anything other nurse said mild sedation mild discomfort (major embarrassment???). Anyone know for sure ???
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Patty, Usually they give IV Versid, which is conscious sedation. Most people don't remember the procedure. So lets go with you are one of those people who won't remember and it will be done and over before you know it. Colonoscopy and Endoscopy are important. Hope it goes well and you get some answers and more importantly some relief. Wish we could all visit you in the hospital....your room would be crowded!
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lindalou. Thanks. That's comforting. Yes please. All come. Plenty of room. The rooms here are huge.
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Patty, so sorry you are in the hospital again. I have asked for versid in the past, I like the way you dont remember the pain of the procedure.
Kiwi Cat mom, I hope you are enjoying your summer in the new houe.
dbl So often I have heard your wisdom about checking on pain if it last 3 weeks. I am working on minimizing my worry and catastrophizing of pain that I am learning can come and go.
cjanet wishing you peace in this season of peace.
Linda thanks for reaching out to Dune she is in my thoughts.
Wishing all some joy in the new year. Thinking of all the recent good newz that has been shared and smiling.
Mary
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PattyP sweetie, they sedate you. You should not feel anything. Yes it's embarrassing maybe you could think of the little ones and get your mind off it a bit. Did you ask about c difficile? they could give antibiotic for that. Best of luck! We will keep you in mind.
Linda! Yeh!!! good for you, can't wait for the pictures. Are they planning in radiating the pelvis progression, or let tx take care of it? Linda let's hope to hear something good about Dune.
Lynne wow! it's so special of you to take the time and let us know how you are doing. Hope for a speedy recovery.
Jobur thanks so much for your comment on the PET issue. For some reason, they seem to be blase about mamos.
Beth, thanks for the update, so nice to hear that you are doing better. My daughter is due in the next 2 wks prob for more scanning, she had sclerotic and avid lesions, so I wonder if only doing PET is ok, they do MRI on the brain after PET but not necessarily on the whole body. If I would ask, maybe they would. But, bone scan, CT or PET? and which of these combinations together?? So scared to miss something, with so much going on in the whole skeleton, whatever they do this time will stamp tx for the next 2 mos.
Terre thx so much for asking bt the little one, YEP she went to school yesterday, hoping and bopping which is just great!! It took a wk! But off she went (of course she would have loved to stay w mommy!
) Take your time w the boxes, YOU are in, and the kittens r there, so that's what matter!Annie, how are you feeling now? Swallowed the VapoRub yet? And your muscle strength how is that coming along? Any changes?
Lindalou thanks for the lovely pictures!
And Cristina we are all nuts! How else can we go through life? And you know what, if they would call you back sooner, you would be less anxious! And then you would not be calling them so many times. Simple.
Hope to hear from Kendrasue soon.
Everyone, hope you have a good night.
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Patty, about ingesting the Vicks vapo rub, wow! I hope dh was ok, it does clearly say not to take it internally but I have put it on my feet like you said. The doctor had given me a nasal spray and an rx for an antibiotic but said not to fill it until I gave the nasal spray a few days. Well by the fourth day my ear was throbbing so bad it hurt into my jaw and the whole right side of my head. Needless to say I went and got the antibiotic and I feel much better. How are you this evening? Try not wo worry about the colonoscopy, the light sedation is very effective and I had the same for an endoscopy and was totally fine afterwards. Sending you healing hugs.
Momallthetime, I'm feeling much better and much stronger, thank you so much for asking. Ear infection is clearing up and I've been feeling better physically too. Less pain but I do hurt when I overdo it which I have been the past 2 days trying to get ready for Christmas. I also brought my eldest daughter to see Trans Siberian Orchestra in Buffalo on Sunday so it's been busy. We had a great time. Are you feeling better? I know you have felt run down and tired but what a great mom you are, taking such good care of Dani. She's so lucky to have you! I miss my Mom so much. I'm praying Dani's scans show positive results. Sending you both big hugs.
Hugs to everyone here, Annie
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Lindalou - the pic of the rainbow is incredible. thanks for sharing.
Here in Oregon we've been having a tremendous amount of rain and a rainbow would sure be nice to see, but according to the local weatherman, it will be awhile yet.
Last Saturday we had a break in the rain, so I decided it would be a good time to go out and rake the leaves in my 10 x 20 front yard. Well not so much! I didn't get to sleep until after 6 a.m. the next morning, plus I've had such significant pain across my rib cage at the thoracic level for the last 3 days that I've had to increase my pain medication intake and pretty much stay in my recliner or bed. It is so frustrating to be reminded like this of this new normal we all get to deal with. I just hope I haven't damaged my T11 by doing this small bit of raking.
Lindae - along with everyone else, I too am looking forward to being introduced to your new fur-baby, Praline.
PattyP - yes it is embarrassing to know that a complete stranger is going to be seeing your backside, but if it is any help, please keep in mind that the doctor is totally focused on the procedure, plus once you're given the sedation, nothing will matter. I sure hope you will get some helpful answers once the results come back.
Lynn - so glad your husband's surgery went well. Will be keeping you both in my prayers.
I hope everyone has a blessed Christmas.
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Hi all!
LindaE - so sweet of you to call Dune. I left her a PM, no response.
Annie - great to see you back! And hope your ear infection goes away soon!
I get to go home from Auckland tomorrow. Hooray! We've gotten a lot done on this project and it's been great working at the client's office. But I'm ready to go home. I plan to take time off between Christmas and New Years; have a bit of work to do, but not too much. Then back to Auckland on the 5th. At least the weather is lovely!
Sending hugs to all....
Terre
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terre. Home sweet home. Enjoy
Annie. Glad ear is getting better
Lindae. - got on this early specifically to check if you had heard anything from dune. Guess not. Boo.
Battery is dying. Bbl.
Hugs
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Patty - I've 2 colonoscopies and frankly it's not as bad as we think. You will be sedated and they are so professional and discreet. I don't remember much of the procedure because I was in la la land.
I have not heard back from Dune nor her mother.
Mommal - no rads on pelvis planned, but I had 1 round of rads in Aug 2014 for pain. I've been having more pain to the pelvis recently but it's due to healing mets. Thinking of you and Dany always.
Good day to all!
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Wanted to wish all you ladies a Merry Christmas so much going on on this thread. My biggest worry is Dune right now. I hope she is just taking a break and enjoying Christmas. Hasn't she done this before? Taken a break I mean?
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Happy Holidays to All!
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I just received a text message from Dune's niece. She told me her grandma asked her to get back to me. I'm so sad to post this but Dune is in hospice. That's all she said. I replied saying to please let Charlene know that all her BCO friends are holding her hand in spirit and that we love her. Also asked if she could keep me posted and I hope Charlene is well taken care of and pain free. That's the news so far. I'm sorry to be the bearer of bad news. Charlene will be in my prayers.
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Thank you, Linda. After going through many of her most recent posts, hoping that maybe we'd all forgotten she was on a cruise or something like that and not finding anything, I was afraid this would be the news. Did her niece give you any additional information re. her location or condition, since hospice care can run the gamut. I would like to send her flowers (I can do it from all of us) if I knew where she is. Damn, I hate this disease. Off for a little cry now...
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Deanna - She didn't say anything else. Would you like me to text and ask where Charlene is? Or pm me and I will give you her niece's number. Her niece did reply saying she will pass along my message and let me know. I assume that means she will keep me in the loop. I'm so upset, I was dreading such news but a little part of me was hoping she was busy with the Holiday season or something, anything. I hate this disease...
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LindaE,
Thank you for taking this on. I too am saddened to hear the news. I remember dunesleeper back from her original lower stage dx. I always hope for the best, so maybe..
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Hello Everyone! I haven't posted or even read here for some months. I had to take a break. I'm so sorry to hear about Dune, and I guess I'll have to go back and read to see how everyone else is doing.
I'm happy to report that in 10 days it will be a year since my latest dx and I'm doing very well. I'm still on my first treatment regime and my TM's stay in the low 20's. I taught my university classes in summer and fall and am now on break until late January. It's been a good year for the most part, but emotionally it's been challenging since the dx. I thank all of you so much for being there when I had questions and concerns. You have taught me a great deal about coping with this disease, and I deeply appreciate it.
I wish everyone a peaceful and blessed holiday season, and let's all pray that this is the year they find the way to beat this disease and set us all free to live our best lives.
Love and Light to you all,
Sharon
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Sharon - thanks for the good news! We need some.
I'm heartbroken about Dune, but was fearing that was the case as we'd been messaging one another (she wanted "cheer up" pictures). Linda - thank you for taking on that task; damn thankless and much appreciated. If her niece has an email addy, perhaps I could send Dune an email through the niece? And I'd like to send something to her at hospice too.
I'm at work at a client site, so can't have a cry, but will later tonight.
Hugs to all,
Terre
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Linda,
Thank you for reaching out to Dune. So glad you received a response even if the news wasn't good. Appreciate the camaraderie of this group so much and I'm sure it was a blessing to Dune as well. It helps, knowing that others are facing similar challenges and caring about one another regardless of distance.
Patty, hope the tests help the docs figure out how to get you back home and on your feet!
Hoping Myra is forgetting all about Cancer for a few days!
Hang in there ladies!
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Terre - I texted her niece asking if we can send flowers and where to. Will let you know as soon as I hear back.
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I am so sad to hear about Dune. cancer really sucks big time. I hate it.
Lynne
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Can someone explain to me why when I was dx stage iv de novo, the planned infusion chemo was cancelled and I do Letrozole and Ibrance instead? "People" always ask why I didn't so chemo and I never quite know how to answer.
My daughter's friend (33 yrs old) a mom with a 2 year old was just dx stage 2 IDC and they are doing chemo now and a double mastectomy later. I don't understand that protocol since mine (mastectomy, ct scan, mets found) is so different. Is her preliminary dx stage 2 but that could change after she gets scans?
So sad for Dune and Carla.
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Thanks Linda.
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Ellelou, your protocol sounds identical to mine. When first dx with stage 3, I had a mastectomy, and during the after-surgery scans, bone mets were found. My planned chemo was cancelled the day before i was due to start, and put on Tamoxifen instead.
In a very badly delivered "verdict" I was told that since my cancer was now "incurable", and that chemo "wouldn't save me", there was no point in putting me through it. I was given a little pill to take every day (Tamoxifen), and told to come back when I had some symptoms from the mets. Followup was booked for 3 months away.
It took me at least 6 months to recover from the shock while I sat at home waiting to die. I finally had followup scans in September which showed the Tamoxifen had failed (maybe had never worked in the first place), and now that I am symptomatic, will get regular scans. But I am still only on Arimidex - still no chemo. I have bone mets in 6 places, a possible in my lung, and my liver markers have gone mad. Maybe soon I will get treatment like I should have in the first place?
Maybe there is logic there, but I can't see it.
Sue from New Zealand.
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Hi Sue,
Amazing that you're getting such crap care! I'm stable on Femara, and get scans on demand (i.e., whenever I tell Dr. Isaacs that I feel like I need one). I do know that they don't generally do chemo for Stage IV until you have mets in soft tissues; for bone mets for hormone positive HER2 negative people, it's just an AI like Arimidex or Femara or similar. The care you're getting sounds like the care I had (or lack thereof) from Wellington Hospital.
I know you said Dr. I is your MO's boss; I'd be on the phone to Dr. I and telling him you want this sorted out NOW.
Sending hugs your way.
Terre
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