Bone Mets Thread
Comments
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mom--I am a lurker on this thread, but could feel the heartache in your posts. So very sorry. You and Dani will be in my prayers
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Momallthetime, I am just gutted by this news, I am so sorry for you & Dani. I have no words of wisdom for you, please let us help to support you if you need it.
Loves, hope you are able to go home tomorrow, home is always best.
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Momallthetime, my heart aches for you and Dani. There are no words to help you feel better, just know that many here are praying for you and your whole family.
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Moma, My heart breaks reading your post. I can't imagine what you and Dani are going through. It's good that you can read about Palbo from Deanna and others who are currently on it. I agree with Myra,and Hydranne. I would encourage you or the onc to talk to Dani along with you and her husband to review the report. As hard as that is, I feel that may actually help her to cope and make decisions for her treatment. We are all here for you, at any time.
Loves, I get labs next week, so don't know if my calcium is low from Xgeva yet. I will let you know. Hope you come home soon.
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Momallthetime, I am so so sorry for the news you received about Dani. I am praying for both of you. At least there is some good news - there are still treatment options. I know that this will be difficult for your daughter. She was hoping for much better news, but she has such a strong support system from you and your family, and you will all be there for her. I am worried, not just about Dani, but about you, too. You will make sure that your daughter gets the best possible treatment. Please don't let yourself get run down. Take care of yourself as well as your daughter. Please keep us posted about the treatment that you , your daughter, and the doctors decided upon. Please don't ever feel bad about anything you post here. We are here to help and support you all the time, no matter what .
Hugs for you and Dani.
Lynne
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Momallthetime, I was so sad to read about Dani's results and was praying so hard that she would have some improvement. I know how hard this has to be for you too and I wish I could take away your pain. I'm sending the biggest hugs to you and your family.
Loves, what great news that you'll be going home already. Wishing you all the best for a speedy recovery.
Hugs to all, Annie
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good morning all
Just wanted to add words of support to you momallthetime. I know it may seem imposible but do heed the words of wisdom from us to take care of yourself. Try to sleep, have a healthy meal and take time to breathe. Your. love for your daughter shines in each word you post. It will help you find the right words.
Loves You seem so strong in your posts. I am sending thoughts of healing.
Thinking of all facing treatment changes including Lindalou. I have had two days of A/A combo and feeling optomistic. The Arnp at my cancer center is watching me like a hawk this month to monitor for cardiac side effects because of my history of postpartum cardiomyopathy.
I do hope Auroa is healing and heading home soon. Myra I am excited for your visit with Mallory. And. I know someone is anticipating visit from son at Thanksgiving. My college sophmore daughter just spent last weekend with us and its such a joy.
Hugs to all
Mary
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Good morning all,
Mommal - I'm so, so sorry. Will be with you and Dani in spirit today and praying your conf call will give options. Please always post whatever is going on. We are here to support you. If we are heroines, let me say you are part of the club. Lots of love and hugs to you, Dani and your family.
Loves - WOW progress indeed! Xgeva lowers calcium levels. Your Onc will monitor this closely and probably tell you to supplement. Congrats on going home! Don't overdo it - let yourself be pampered for a little while. Wishing you a speedy recovery.
Lindalou - feeling any better?
Terre - Any news on bone scan?
Myra - Enjoy sweet Mallory!
Special prayers to Dani and Mommal today.
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I join everyone in sharing momall"s pain and sending prayers of healing for Dani.
Update: I saw the Ortho two weeks ago and he lifted the restrictions on weight bearing on my right hip so I've been walking with the walker during therapy I'm stronger and I can pretty much transfer from the bed to the chair by myself so I guess I'm getting closer to going home but I don't know when just yet. I'm going back to see the Ortho this Thursday and he is going to remove the last staples.
Tomorrow I have my appointment with the oncologist and I'm scheduled for my first chemo treatment since surgery.
I read the thread all the time and you are always in my mind and prayers.
Au
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momallthetime, I'm so upset to hear about Danu's scans, I didn't sleep well last night after reading your post. l"ve only skimmed everyone else's posts -- sorry, on my phone -- and will try to catch up later. But just wanted to let you know that I am heartsick, yet still believing there are answers to be found, and it sounds like your onc is forward-thinking enough to find them.
As far as Palbo, I would take these SEs over chemo any day, so don't worry about them or let them dissuade Dani. Hugs & praying.
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good morning guys.,
I could sure use a hug today. I am so jealous of all you ladies with wonderful relationship w your DHs. I'm so frustrated w mine. Just found a credit card bill with overdue charges on it. Plus he's not bringing home enough money to support us and won't listen to me say get a job. I am so tired of his bull and so disappointed in him. I just want someone who will take care of me. I don't need more worries. I am working full time for health insurance and to pay bills. I wish he would step up and stop fooling around w real estate bc it seems to be going no where. There is not much profit. he could sit around and file for unemployment and get more. I guess what frustrates me is I've asked him just to pick up some part time work and he acts like I'm torturing him. I've asked him to man up and support the family. And I've received advice from my best friend that I shouldn't leave or ask him to leave because I need to be able to support the family on my own without his support. Her DH is a lwayer and this is what he's told her. That even w the legal system it's hard to get the man to give any financial support so I need to be ok. And of course I'm not ok on my own, I never thought it would come to this. But with me feeling so frustrated and angry w him, I don't think it's good for me to be around him. I really just try to avoid him as much as possible and that makes life difficult.
Sorry if I'm not adding more positivity to the board these days. I'm kind of stuck in a rut and don't know what to do about my situation.
I just feel like I need a big hug!
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Mom, I just read your post. Oh how heartbreaking! I wouldn't know what to tell her either. Is she willing to try more treatment or is there a certain point she has asked for hospice? I wouldn't want to see her suffering from more side effects of a chemo if it's not even going to help
How about clinical trials? Or is she not stable enough for those? I agree w others, try to take good care of yourself throughout all of this. What a nightmare for you. Sending you hugs.0 -
cjanet, sending you lots of hugs and prayers. Life is so unfair, I have good friends in your same situation, and I can't even imagine how hard it must be when facing cancer on top of it all. There are many good people out there, I hope you can connect with someone who can help you find comfort and help.
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Cjanet men can be such little babies. I've been married now 21 years now I tell you when I was your age I wanted a divorce so badly for a while. We had money issues and three little kids to help with the stress level. The addition of cancer in your case I can't even imagine. We got through it but it wasn't easy. I kept telling myself why did you marry him look for the reasons and I found them and I found love again. The worse is the money worries, now at fifty this disease has put us again in financial crisis but this time we lean on each other and talk a lot. If you start going out of each other's way that's the beginning of the end. I wish you all the best of luck. Sending hugs your way.
Wendy
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My prayers are with everyone on this board. I read daily. Have not posted much because my situation seems to be so fluid. Confirmed last week mets to the spine. First shot of xgeva and started aromasin. Dr called yesterday about quadrupled liver enzymes in one month. Repeating bloodwork tomorrow. Hoping no liver mets. Is this thread for bone only? You are all an inspiration.
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Mab60 - It's nice to hear from you. Good luck with those liver enzymes. We kind of mix in a bit of everything on this thread, so just jump in.
Cristina - don't know what to say other than you are in my thoughts. Big virtual hugs coming your way.
Had my consult with RO today and going back tomorrow for prep scan for 1 round of rads to femur.
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Cristina, Wendy gave you such wise advice. Marriage isn't always easy, and adding the stress of mbc on top of the problems we all go through has got to be so tough. In fact, it's not unheard of for men to desert women going through bc, so at least you should give your DH credit for sticking around, even if you think you'd rather be alone. I also wonder how much your meds may not be helping your emotions. Sending you a big hug and hoping things improve.
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Cristina--BIG HUG coming your way.
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LindaE, I'm hoping this round will help alleviate some pain for you. I'm feeling better, thanks for asking. But my14 day migraine is still up for grabs!
Christina, I so wish you didn't have to deal with all of this. Sending you a big hug.
Auroaya, Your recovery sounds like it is really coming along. Closer to getting home every day. Good luck with your chemo.
Mary, Isn't having your daughter home the best? I was in heaven when my son was home. I'm glad to hear your Arnp is following you closely.
Loves, how are you doing?
Myra, be sure to send pics of Mallory.
Best to all....oh and Dee.....I keep seeing 'Cheers' everywhere now. I should just buy one!
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I texted Patty earlier today and just heard from her. She's taking more meds for extreme pain which is causing stomach issues.
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Mab60'- Welcome to the thread. I am happy to have you here. As someone mentioned earlier, we have a good mix of everything here. I look forward to hearing about your treatment, concerns, and developments. There are many wonderful, wise, supportive women here. I hope the results of your blood work are good and that you don't have liver mets. I will say a prayer for you, and you will be in my thoughts tomorrow.
Linda, thank you for the update on Patty. I hope she finds pain relief soon. She has had such a rough time lately. I hope your rads help relieve your pain. I am glad treatment is starting so soon.
Cristina, i am sorry for the way things are going in your relationship with your DH. I wish I could make everything better for you. You have so much going on in your life right now, that it must be difficult to deal with everything. All marriages have good times and bad, but I am sure that it is especially hard for you now when you are also living with mbc. You cannot try to take everything upon yourself. I am sending you (((hugs))).
Momallthetime, Have you discussed the latest test results with Dani? I hope the next treatments yield better results and that improvement begins quickly. You are so strong and such a blessing for your daughter.
Auroaya, it sounds like your recovery is going well. You are seeing great progress. You have so much happening now - staples being removed, starting back on chemo, getting stronger - WOOHOO! I hope you are home soon.
Carol, It sounds like you are making great strides in your recovery. I am so happy to hear that. Here is a WOOHOO for you, too.
Myra, it is so exciting to spend time with grandchildren, isn't it? We are all waiting for new pictures of your beautiful granddaughter.
Lindalou, I hope your migraine goes away and stays away.
Mary, Will your daughter be coming home for the holidays?
Annie, Deanna, Ellen, Terre, Holly, Deb, Dee, and anyone else I have not included by name, have a good night. I am thinking of all of you.
DH will have CT scan on Thursday., then we play the waiting game.Thank you to all of you for your support.
Lynne
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Lynne - sending good thoughts for the CT scan.
Myra - we want Mallory pictures!
Christina, I'm so sorry that things are so darn hard with DH.
Linda - thanks for the Patty update.
Sending hugs to everyone...and did you see this? http://www.breastcancer.org/research-news/new-rese...
New cool research...
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Terre....bone scan results??
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Hello All!
Linda, I hope rads will relieve some of your pain, I know it's worked quite well for me and thank you for the update on Patty.
Lindalou, sorry to hear that you're suffering from a migraine, they are so debilitating. I think "cheers" is a mainly Canadian/British term. I've used it for years, can't think of a better word!
Cheers!! Cristina, a really, really big hug. I don't have any advice for you, but I hope you are able to figure out what is best for you.
Auroaya, Good luck with your chemo.
.Lynne, best thoughts for a good CT scan
Hello to everyone else! Annie, Myra, Mab, Deanna, Ellen, Terre, Holly, Wendy, boy is this ever a memory test for those of us with post chemo brain. Sorry to anyone that I missed, no intention but I must try to keep up with this thread a bit more often.
Cheers, Dee
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Well it seems that just when I thought things were improving I had a small set back tidy. I had PT this afternoon and felt energized so I pushed my self a little harder then later on I went in my wheelchair to the park across the street with my daughter to have lunch. Seemed like the perfect day until I came back from the park and got in bed and saw the wound was leaking and everything got soaked the nurse was busy so it took a while to get it under control. I just hope my blood levels are ok tomorrow for chemo.
Sending hugs to all
Au
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Auroaya, It sounds like you had a lovely day until you returned to bed. It must have been scary and frustrating for you to go through that. It is terrible that it took so long for the nurse to help you. I hope you are feeling better now and that you can still begin chemo as scheduled. If chemo needs to be delayed due to blood counts, so be it. You will just start a bit later. Hugs to you.
Lynne
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Hi!
This is not my first time on this website, I joined in 2008. It is now 2015 and I'm back writing my first post. I find myself still inspired by it all. I admire the strength and the support that each and everyone of you maintain for yourselves and share generously with others. Despite all the help and support that a person can have from their friends and family...there is a difference when there is a community of others who are traveling the same(similar) path. I am thankful to have this thread.
My first diagnosis was in Oct. 2007. Invasive carcinoma Stage 3A 4/17 nodes, I opted for a bi-lateral mastectomy and went on to have chemo (adriamycin, cytoxan, taxol), radiation and tamoxifen for 5 years (ER, PR positive, Her2 negative) In August of this year I injured my left knee at work and was told that I had sprained my knee and basically wrapped up in a mess called workman's comp. My knee did not heal after three weeks so an MRI was requested and it was from this image that the lesion on my tibia was discovered and it was suggested that I see my oncologist given my history. A biopsy was performed to determine whether the tumor was benign or malignant and unfortunately the cancer was back. PET/Bone scans were ordered and on 10/20/15 I was diagnosed with mets to bone and am trying to find ways that are make sense of what is happening. Trying my hardest to live with this diagnosis without being inundated and learning how to manage all the information that is available. I have pretty extensive bone mets (skull, hips, tibia, spine, ribcage) with two malignant nodes in my chest but have minimal symptoms. There is this strange, dull, achey feeling in mostly my hips and legs. Intermittently I will have sharp pains in my shoulders and in my chest. Those will generally subside and eventually disappear. There certainly is a heightened awareness to how my body is feeling. I am more tired than usual but not in a debilitating way...fortunately I am still able to do a majority of my day to day things. My TM did not cause any alarm aside from a slight elevation but it was still within range. Has anyone experienced that ? If I hadn't injured my knee, we may not have discovered that my breast cancer had metastasized. My oncologist will not be using that particular blood test anymore. I was worried about the two nodes in my chest but onc was not concerned with them. In fact he said that if he were to scan someone...say my husband who is seemingly healthy that he could potentially have nodes that show an uptake in a PET scan. That makes sense only in the fact our bodies are constantly fighting against "bad things" but his explanation doesn't really provide much comfort for me. Has anyone had some experience with that? I have not started treatment...waiting for 2nd and 3rd opinions. I am not against what my onc is suggesting (no hormone treatment because only 10-20% of the cells stained for ER and was PR negative, the plan includes biphosphonates thru IV and abraxane every 3 weeks) I am looking for options from places that also have an integrative cancer program. Is any currently enrolled in a program that uses both conventional and alternative methods for treatment? I would love input of any kind, your stories your experiences with your doctor, treatment, administration head aches (they have been the most harrowing out of all the experiences that I have had thus far) Really. Everything, anything is deeply appreciated.
Karen
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Mom --sending prayers your way. I am so sorry. It's just heart wrenching.
CJanet-- sorry you are going through heck with your DH.
I just want to send love to everyone. Feeling sad.
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sending love back your way Rachel.
Karen welcome and I am sorry you have to be here. I also have TM that are meaningless, so I have had pet/ct scans every 3 to 4 months and I have had 3 mris in the last year checking on symptoms. So even with out TMs I feel like my MO keeps a close eye on things. I see my MO or his Arnp every month when I get zometta infusion. My MO encouraged second opinion, and I traveled to a NCI hospital (Seattle Cancer Care Alliance) . I can return to scca doctor in the future if needed. I have been at this stage IV stuff for one year. It is easier physically and emotionally than in the begining. I have gotten a ton of support and information here.
I wish you much peace.
Mary
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Karen, welcome! Sorry for the reason for you to be here, though. Glad that you posted! I also have extensive bone mets. So far bone only. I believe you are also a bone only metster to begin with which is a good sign. Only 20 percent BC metsters are found bone only at the diagnosis. Your mets pains are still relatively mild which is also a good thing, because you are still rather asymptomatic. I am currently on hormonal treatment (Letrozole daily, Zometa monthly). So I have no specific knowledge of chemo treatments for MBC.My impression is the chemo for MBC is a lot milder than the chemo at the first round BC. Where would you go for the second and the third opinions? If you go to Dana Farber, I suspect that hormonal therapies would be suggested. I think it is a very good idea to invite more opinions. You will be OK. Once the treatment started, you will be settling in a new normality. You will find your way. Good luck with your treatment! Wish you great results!
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