Bone Mets Thread
Comments
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lynne. So glad your dh is home. How scary yesterday. Hope he mends quickly
I am in the hospital, Again. Got here last night. Same ole thing. Had a bug or something for a few days then uncontrollable vomiting, diahrea, and dehydration. Same issue but no real answer. Urune sample showed alot of blood so more scans they want. Ugh.
Hugs to all
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PattyPeppermint, sorry you are back in the hospital again! Sending good vibes that they soon find the answer to end with all of this. You have had a long run with this "bugs" praying it will go away soon.
Aurora
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Geeze...Lynne - so happy you're home from hospital and DH is doing better. Patty - so sorry you're in hospital. Hope they get it sorted FAST!
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Lynne I'm so happy you are both home , now he can begin mending in his own environment . Nothing like you own bed and peace and quiet.
Patty man that sucks! I was thinking of you yesterday and this may be way off but could it be some sort of allergy? Idk they have to find an answer for this soon it's ridiculous.
Terre my daughter found a kitten yesterday in a parking lot where she lives. Of course she fell in love with it immediately and tells me it's my fault because she is only doing what I would. Made me think of you.
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Wendy please try to stay calm-you need to compare the results from the same modality. Plus, your breast tumor decreased in size- take the joy from that!
Babs
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Hello all!
Kathryn, I hope you're doing something fun, being away for 10 days, not thinking about cancer. The only furry friend around around our place are from DH, so that will have to do! ;-O
Patty, oh girl, not again. I feel so bad for your & your family. Please get better soon. I hate to think of you in the hospital again, not feeling good. ((hugs))
Lynne, I hope you & DH have the most lovely sleep tonight in your own bed. I'm so happy for you that he is again home. Now you just have to keep him home. Best thoughts.
Terre has posted the most adorable kitten pictures on the Cats, Cats, cats thread. If you like cute kittens, you'd best pop over there & take a look. There is a black mama cat who along with all her black babies has taken in one orange tabby, it is the sweetest pic.
Peaceful, painless weekend thoughts to all of you here, cheers, Dee
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laying awake in this lonely hospital room. Can't sleep brain is going full speed. Nothing positive for sure. Glad to come here and see what everyone is up to.
Hugs
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geez girl, sleep is what is good for you.... not laying awake here. What if I scold you like a mama would? Would that send you back to bed to sleep??
j/k unless it would really work, hugs, Dee0 -
Patty, Wish I could come sit with you. Yes, come here to us and we will 'talk' to you.
Deanna, how did your scans turn out?
Terre, what a nice article about you and dh. Sounds like you had a special evening. As always I love the kitten photos. I went to see a cat yesterday named Diesel, but turns out he is too sick to adopt.
Marilyn and Lynnwood, Congrats!
Kathryn, Have a good trip and tell us all about it when you get back.
Lynne, I'm so relieved to hear you are both home and in your own bed and quiet. Rest up too as you have been through a lot.
To all a good weekend.
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Some tulips for you Patty and Bosco
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Good morning all,
Lynn - 8 weeks! You both deserve to be in the comfort of your home. Best wishes to both of you and hugs.
Patty - aww sweet Patty. I also wish I could be with you in that hospital room. We could color together, I'd love that. The night must have been so long for you. Imagine all of us having tea with you. I'm here if you want to "talk". Not going anywhere today, a lot of snow in the forecast. (((Hugs)))
Good week-end to all!
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Patty-we're all there for you. Sending you a virtual hand holding and a hug. Try to rest-which is almost impossible in a hospital, as we all know.
Linda those flowers are beautiful-my favs-tulips!
I'm really feeling my heels from the Xeloda-ouch! Glad this is my week off. I'm just a nervous wreck. Monday is scan day for me. In the year since I've been dx stage iv I haven't had one good scan result. So hoping the tide has turned at last!
Babs
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beautiful tulip
Good morning. Still no sleep so thought I'd come see what y'all are up to. Anybody doing something fun today?
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Hi Patty
Sorry you can't sleep but then hospitals are NOT a place for sleep!
Going to lay in bed until it's time to get my hair blown and nails done. Then its off to dinner with cousins. Tomorrow a friend is coming for the day and then dinner at night with my daughter-keeping busy for scan Monday!
Hoping you're okay-hugs
Babs
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Babs I'm hoping your scan gives you something positive tomorrow we could all use some good news.
Patty you're breaking my heart girl I hate hospitals so much after the birth of each of children I spent a total of 15 minutes in the hospital and ran for home. Sadly now with this disease I am forced to accept hospitals. Let them take care of you, pamper you get you better then get you home. My husband came up for my oncologist appointment last night was great we went out all together my sons and my husband and I and watched dead pool kind of gruesome but I laughed through the whole thing not what I expected at all. My boys are way taller than I now so I feel like a pipsqueak running around with them and I'm 6'1" tall. So you can imagine the giant brigade. Today looks like we may have some sun all the spring flowers are racing each other to be the first to bloom and the birds are singing their spring songs. Renewel is nice to see the smell of spring is for me one of the best things . Do you have a window? What's the weather doing there? I believe the rest of Canada is still deep in winter. I am thinking of you and I am here for you as well. Big Hugs!
Wendy
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Patty thinking of you and your family and wishing a speedy return home and some answers. I want to send TV's Dr. House to you to get some answers.
Lynn so, so happy for you and your dh. My favorite high protein snack Greek yogurt with jam. I hope his body listens to your demand for no more complications.
Wendy thinking of you. Hoping more scanning gets you some answers. AI's are powerful drugs and for me so much easier to tolerate than tomoxiphan.(? Spelling).
Deanna sending you good thoughts on your scans.
Lindalou and Auroaya Thinking of you lately and hope all is well.
Terre thanks for the wonderful kitten pic.
To babs, GG, momallthetime, kathyrn, and everyone I carry you in my heart and wish you peace and some you today.
Mary
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I am posting on behalf of my 85 year old mother Anne (pron Ani). She cannot speak for herself so I have been her advocate. My mother had a breast cancer diagnosis about eight years ago. She has ER/PR positive and HER2 positive cancer. We discovered last March that the breast cancer had metastasized to her bones and liver. She was put on Herceptin and Tamoxifen along with Xgeva to protect her bones but the doctor said the chemo wasn't working. Not much of a mystery there, as the oncologist did not ask about other drugs. My mother was on Paxil which completely undermines Tamoxifen and also is linked to a high mortality rate when taken with Paxil. My mother's oncologist got sick and my mom was transferred to another MO. The MO moved her to KADCYLA but quit giving Anne Xgeva for her bones. She was told at that time to stop the Tamoxifen. When Mom's doctor came back to work, he started the Xgeva shots again and added Femara after I pitched a fit about the problems of starting Tamoxifen again. My mother was responding well to KADCYLA but she suddenly lost lung function on February 4. We got my mom to the hospital but the doctors were afraid if they put Anne on a ventilator to do exploratory surgery that she would never come off of the ventilator. She was put on oxygen, antibiotics, steroids and something for shingles. She was moved a few days ago to an acute care hospital. Her lung function has improved so she has been removed from a gigantic oxygen machine. We are unsure if Anne will require subsequent physical therapy.
I doubt the MO will ever want to put my mother back on KADCYLA. However, I urged the hospital doctors to leave my mother on Femara and to consider giving her the Xgeva shots. She missed three shots while her doctor was sick and another shot since she has been in the hospital. I read somewhere that the AI drugs may hold back the mets. While Xgeva is a bone drug, a recent clinical trial showed that it may slow or stop bone mets.
I know nobody has a crystal ball and that everyone is different. I would like to know if anyone here is on Femara or another AI drug that is holding back the Stage IV cancer. Also, are there any big sticks (convincing arguments) I can use to convince the hospital doctor to give my mother an Xgeva shot? I had to explain what Xgeva is to the doctor. I him it is a bone drug given to Stage IV cancer patients to reduce the risk of bone fractures, and I nearly begged him to review Xgeva to see if he could order a shot.
I don't think we will have Anne with us much longer, but maybe the Femara and Xgeva if she can have the shots will stabilize the mets. My mother appears to have tolerated the drug well.
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Decisionfreak - I'm really sorry for what your Mom is going through. It really is a shame that neither the docs nor the pharmacists picked up on Paxil. I was on Tamoxifen for 5 months and had to change Zoloft as that doesn't agree with Tamox either. I've been on Femara for about 2 years and it's keeping me stable so far. I've been getting Xgeva for the past 4 or 5 months and had Aredia (pamidronate infusion) for 2 years prior to Xgeva. But I am not triple positive like your Mom. Is there any plan to add a tx for HER2? If I had to convince my MO to give Xgeva and explain what it is, I would go for a second opinion stat, especially if she tolerates this med well. A second opinion also because of HER2 status which doesn't seem to be taken into account in her tx plan. Wishing your Mom the very best.
Patty - not doing anything exciting today. Cleaned all the snow off my car and now we have freezing rain! I took Praline to the vet yesterday and the poor little thing has an infection in both ears. Antibiotic drops it is for 2 weeks. And I seeded tomatoes, oregano, basil and thyme today. Little project for the rest of the winter and can't wait to look at them having my morning coffee on the balcony. Any visits planned for you today?
Babs - may this upcoming scan be the exception to the rule!
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LindaE54, my mom was on KADCYLA for her HER2 breast cancer. I don't think she will be allowed to have chemo infusions of this powerful drug again because it might have lowered her immune response and allowed her to get a lung infection. It is not my Mom's original and current MO that has denied her the Xgeva shots. She is in an acute care hospital and I am trying to explain to the doctor there that she needs an Xgeva shot to protect her bones. I imagine my mom will be placed in home hospice care soon, although we may appeal to my Mom's MO about any other therapies that he might be willing to prescribe for HER2 positive cancer.
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decsionfreak,
I am so sorry to hear of your mother's condition. This must be a difficult time for you and your family.I too was wondering about targeted therapy for HER2+. As far as Xgeva is concerned, my mo looks at the bone building drugs (Xgeva, Zometa, Aredia etc.) as a support component of tx for bone mets, not the thing that really keeps them at bay. I was on Aredia for two years after my dx, but concerns over se's from long term use played a part in the decision to stop. I have however, been on Femara and, before that, Arimidex for over 4 years and remain NED. Your mother's situation is very different from mine, so not sure if my tx is helpful in looking at hers, but my point is that bone building drugs are not the most critical part of tx for bone mets.
I hope your mom is comfortable and pain free. Take care
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A recent clinical trial found Xgeva can keep bone Mets at bay. A news article about the study is posted somewhere on this site.
Mom was on KADCYLA for her HER2 positive cancer but I doubt the MO will allow her to take the treatment again.
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Decisionfreak,
Yes, I understand that. I am not medically trained but bone strengthening drugs are a good adjunct to the main therapy and in some cases may help, especially if one is not concerned with the se's that long term use can produce. I think that was my mo's main concern, since I show no signs of progression. Take care.
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Decisionfreak - I think, but don't quote me on that, Xgeva like pamidronate infusions can slow down the bone mets process, but I agree with Caryn that it's not the critical part of tx for bone mets. One other thought, if your Mom's blood calcium levels are low, Xgeva cannot be given as it lowers them. I'm certainly not an expert on HER2, but have they tried Perjeta?
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Hi, again, I forgot to say that my Mom's bone mets are in her skull and this is concerning to her and is a sign of progression. She has only been on Xgeva since last March, and she has missed four shots. At her age, we are not worried right now about long-term use, as she is not anywhere close to being a long-term user. I want to keep these bone mets from progressing NOW, not later, while we may still have some quality time with my Mom. The mets will take my Mom from us soon enough given that it is doubtful the MO will give her chemo again. As for a second opinion, her current MO belongs to the only oncology group in our small city. He is the only highly qualified MO within 225 miles. My mother is too sick for us to take her to an NCI designated comprehensive cancer care treatment facility where I received my care leading to a cancer free DX and no rads.
It is my view that my Mom should be given the drug Xgeva to prevent fractures caused by mets in her bones with the added benefit that Xgeva has been shown to stop or slow bone Mets. What is wrong with this idea given all the facts presented?
I just want the right argument to convince the hospital doctor to give my Mom an Xgeva shot. She falls frequently and I don't want her life to end from a bone fracture while she is still well enough to enjoy her last days.
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LindaE54, very smart of you to mention the importance of blood calcium levels for Xgeva. Based on lab tests, my mother's blood calcium levels are fine. The NP told us to give my mother a simple calcium supplement. She already takes vitamin D supplements.
I am 99 percent certain that Phase III clinical trials demonstrated that KADCYLA is far more effective than Perjeta in disease free survival time. The difference was statistically significant. We may ask the MO if he will try another chemo drug but it is doubtful given the apparent impact on her immune system leading to likely infection and undetected scarring of the lungs and other opportunistic infections that landed my Mom in intensive care and then in an acute care hospital.
All I want now is to protect my Mom's bones and do what can be done to stop the progression in her skull. It upsets her to know about the skull mets. I don't want the cancer to bore down into the dura matter of my Mom's brain.
Thanks all for the help and suggestions. I am apparently not communicating very well. I appreciate the kindness and concern you have all extended!
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hello everyone. While I do not post often I read daily and find ya'll to be an incredibly supportive group with a wealth of knowledge. I have been receiving monthly xgeva. This week when I saw my oncologist she stated that a recent study showed no benefit of monthly shots compared to shots every 3 months. Is anyone else following that protocol. I hope everyone is having a decent weekend. Hugs to al
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Mab60, very interesting to hear about the less frequent Xgeva injections being as effective as monthly ones. I am going to try and find the research. Thank you for posting.
I agree that this is a very supportive and kind group of people. I am having a terrible Fibromyalgia flare that prevents me from appearing as grateful as I am.
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DecisionFreak - My MO initially gave me an Xgeva injection monthly for 3 months, but now she only gives it every 3 mos. along with the Faslodex/Ibrance combo. Hope you find the answers you want to help your Mom.
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JazzyJuneBug, this is very reassuring information that reinforces what Mab60 says! Thank you for adding your kind voice to the chorus. I am very concerned about my Mom and also in pain today.
I wish I felt that my Mom will get good care after she comes home, but her MO is still recovering from a horrendous health problem, and he is very limited in his ability to attend to patients. His NP is fantastic though and I do think she will do her best to work with the MO and my Mom to see if there are treatment options.
We just have to hang tough. I am only three weeks out from major breast cancer surgery and recovery is at least six to eight weeks. I still have sutures in both breasts. As long as my Mom wants to live, we will fight for and take care of her.
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Hello everyone!
Welcome to all newbies! You have found the best resource for support and knowledge. These ladies are wonderful!
Patty, sending a big healing hug!
Lynn, I'm so happy to hear that you are both home! Let the healing begin! It's been such a long rough road for you and Dh! You are still in my prayers.
Deanna, praying for some great results on your scan! The waiting is such hell!
Terre, loved the Valentine pics! So nice to see your smiling face! The kittens are adorable. I think of you as some kind of kiwi Wonder Woman. Always working and volunteering. I feel like a lazy bum compared to you!
Wendy, you know how much I love you! We are all going to,get through this together!
I have a concern of my own. The past month or so, every joint in my body is popping and snapping. I sound like a creaky old gate when I move. Could this be a zometa or tomaxifen se? Of course my mind immediately goes to progression. I'm not feeling any increased pain.
Annie,Bosco,babs,Lindae,Dee,Kathryn,carol,Auroaya, and everyone my air head can't remember. Love and peace and pain free wishes! Mwah!!
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