Bone Mets Thread
Comments
-
Lynne you made me cry. You cannot make this up. I've seen this up close. I am in awe how you can even relate what happened, because this back and forth is very draining. Cheering for DH to get good results soon. Sometimes it could be a UTI from the catheter they put in. Hope you get the support you deserve!
Bosco are you feeling better?
Annie!! So happy to hear you are in a good place. Wow you waited for this so long! Love it.
Mary - hey proud Mama. Good for you. Oh, those moments...
Wendy - what a torture the waiting. Like it's been said over and over, it's always waiting now. For blood results, for scans, then again...Time is not ours.Hoping for the best!
Rachel oh my those little ones are true copies of yourself. Go Mac. He will make the whole family happy.
Carol enjoy the family. So nice.
I also spent the weekend with Dani, she has lots of aches and pains. So how do we know if it's SE's or the worst. Can't tell. Now she has some swelling in the lower legs, we are concerned it should not be a clot. BT's will be done only tomorrow, I have to ask for PA if we could get stat results on it, we don't know where her platelets are holding...what else could it be??It's a bit painful towards the foot.. Let's hope it stays the same till tomorrow. I have come to dread Fri/Sat/Sun if something happens on those days, it's mercy time, everything is in slow mo...big monsters lurk. Agh.
0 -
Bluefrog - Thanks for sharing the new pic. Mac looks so cute on his bed. And your kids look so happy to have a new friend as well. (Sorry, I forgot to mention that earlier).
Momma - Is Dani's leg red? When I had a blood clot a few years back my ankle hurt like I'd sprained it, but I hadn't. I went to the doctor's office and when he squeezed my calf, I about went through the roof. He sent me to the hospital for a doppler and they found a clot just below my knee in the peroneal vein. I've also been having swelling and fluid retention in my legs recently, so my MO sent me for an ultrasound, but thankfully no clots. I think I read recently that swelling can sometimes be related to the Ibrance. Always best I believe to contact the doctor just in case. Better to be safe.
0 -
Jazzyj no it's not red. It could be accumulation of some type of fluid? but why? that would be the next question. thx for caringl
0 -
momallthetime, maybe she is experiencing Lymphdema in that area. Just a thought.
Stllivin (Suzy
0 -
Terre -- Just saw you had a sizeable earthquake in NZ tonight. Hoping you check in soon and let us know that you're okay!
0 -
I am so scared! I've been a lurker since my diagnosis in June of 2012, but have only posted a few times. At time of diagnosis, I went through the usual feelings of shock and dismay, but I'm strong, I persevered through chemo, surgery, rehab, and radiation. I had a great support system and on my last day of radiation, I got a puppy and never looked back. Well maybe a little, but truly believed that I was cured. I've been on Armimidex which has given me a lot pain in my hips & joints, but with pain meds I was able to work and just learned to live with the pain. I'd get through the day at work, come home, take the pain med, take a walk with my puppy and found a new life rhythm. We took a trip to Hawaii to celebrate being cancer free, watched one daughter graduate from HS & the other from college. I was so happy to have my life back and blend in. I truly believed that the Arimidex would keep the cancer from returning. So I lived with the pain and never really complained except a few times when it got bad.
On several occasions, I went to see my PCP complaining of pain in hips, butt bone and all 3 x rays came back clear. NED. About a month ago I started having pain in my mid back and this felt different so went to see my PCP again (I waited about 3 weeks as the pain would come and go and didn't want to be seen as a hypochondriac) and she did x ray, but it came back with a compression fracture to my L-1. She ordered bone scan which revealed that I had cancer in spine, hips, ribs, arm, and skull. I went to see a new oncologist that replaced my original (who I adored) and had retired in May. I had gone to see a chiropractor and nutritionist in June to see if changing my eating habits would help with pain. I've lost 40# and felt a little better, but always the pain. I survived my days by taking pain meds after work and before bed so that I could sleep, but in the fall I was starting to take the pain meds in the afternoon as I was finding it more and more difficult to get through the day. Since I finished my radiation, I've never had any more scans, tumor marker tests, nothing but a mammogram to my remaining breast which was kind of a joke to to me as my original tumor in my breast was never detected by a mammo or ultrasound. I found my cancer by accident in my lymph nodes and they couldn't actually see it in my breast until I had a pet scan. very sneaky.
So here I am waiting for the insurance company to approve a CT scan and the oncologist said that he doesn't think I have any involvement in my liver because I look healthy and my blood work looks good. Also, my weight loss was due to changing diet not a mystery. In reading more about metastatic cancer, liver is only one of the other places the cancer goes to - what about my brain? lungs? I guess that is what the CT scan is for?Oncologist did an infusion of Zoleda and told me I'd be doing radiation and an oral chemo. He told me that the radiation will help the pain and kill off the cancer. The scans that I saw were scary. They show a lot of cancer in the spine and the pain in my butt bone from December that I was told was a hamstring pull is actually cancer. In some ways, I feel relieved to know that it wasn't all in my head, but on the other hand I'm wondering how long I will survive all of this. If I'd known sooner that it was growing in my body, maybe things would be different. I know better than to ask the question, but I did and he told me up to 5 years. But since it spread so aggressively to my bones, why wouldn't it do the same to other places in my body. However, I hear so many stories about how long people live with metastatic cancer, but with how much involvement?
I haven't told many people about what is going on and so I'm not getting the support that so helped me through the first diagnosis. My mother has never been a nurturer and she hasn't even checked in to see how I'm doing since I told her about the bone scan last week. I feel very alone, confused and SCARED. My husband is wonderful and very supportive as are my daughters, ages 24 & 21. I'm not sure I like my new oncologist, but we met under stressful circumstances. I should hear more about the CT scan tomorrow and hopefully after I get it done, I'll have a clearer picture about next steps in timeline, but he did tell me that from here on out, I will always be doing some kind of treatment. He took me off the Arimidex because he said it obviously didn't work. I'm living in limbo. I'm writing tonight in hopes that someone might read this that has gone through a similar experience and can help me understand what this all means. I'm also finding that I don't want anyone to give me a RAH RAH speech as I'm just not in that frame of mind yet. I don't want to be told that everything will work out, how does anyone know that? I know that once I know what I'm dealing with, I will do everything I can to beat this. I know that the cancer will eventually kill me, but I don't know how I'm going to do with the treatments, continuing to work, and keep up the good attitude that so many have come to expect from me. The recurrence support is so much different than the initial diagnosis. Also, I am considering looking at a 2nd opinion at the Seattle Cancer Care Alliance which has been recommended to me by others with Stage IV, but that would be giving up all of the great people I've met where I go now.
Maybe there is no one out there that will read this, but it has helped to write it down. Any advice, words of wisdom from someone who has "been where I am now" would be so appreciated.
Thank you,
Susan
0 -
Hello Ninja,
I am so sorry you're dealing with all this. Your feelings are totally natural considering the circumstances. If you decide to go to the cancer center recommended to you, you may find more of the answers you need and it could help you decide whether or not your present MO is the right one for you. Although you really like the people you've been dealing with, the most important thing is to know that you are getting the best care possible. I was dx'd with mets to my thoracic spine in 2014 which initially presented as pain in the right upper quadrant of my abdomen and the docs said it was from my fatty liver. My dx was ER+/PR+, HER2- as well and my MO told me that it tends to be less aggressive, especially since it started in my bones only so far. But cancer is a very individual thing.
I had a very poor experience with the first MO I had, but I was very fortunate to have a neighbor recommend the one I have now (who is excellent). I also went to the Mayo Clinic in Arizona for a consultation and they gave me the same recommendations that my MO now had given me. It is very important to have a doctor(s) who you feel comfortable asking any and all questions that come to mind and that will be compassionate and forthright with you. There are also many ladies here on this board who have much more experience and wisdom to share than I do and you can be sure that they will answer you a least by tomorrow morning. I hope you don't have to wait too long to find out what your treatment plan will be and get started.
0 -
Susan,
I am sorry that you are going through a difficult time, but you will find that you have come to the right place. Welcome to the Bone Mets thread. There are many wise and supportive people here who can help. I was diagnosed with stage IV right out of the gate. I have mets all over, spine, ribs, femur and tibia in both legs, humerus in both arms, ribs, sternum. I was as shocked as you are right now. I was scared and depressed, but I found a wealth of information to get me through it. I was in a great deal of pain. Since starting treatment, things have turned around, and I feel really good and am living my life to the fullest. I know when pressed, your doctor has told you that you have a chance of a five year survival. I think the reason that he was reluctant to give you a number is because no one really know. The statistics that exist are outdated. I never asked my doctor for a number, but he told me that he believes that I can live with this disease for many, many years. People with mets to bone-only can live a very long time. Even if it is in other areas people can live a long time. In either case, you will find many people on these boards who have lived for many years with mets, and some are now enjoying periods when they are NED (no evidence of disease). Although we will never be cured, and we will always have treatments and scans, many of us are doing pretty well.
I think a second opinion is a good idea for you. You do not have to stick with the new onc, but it is always good to hear what a second doctor has to say. Armed with additional information, you can choose where you want to receive your care and better understand the options you have for treatment.
I am glad that you have a supportive family. My family continues to give me strength throughout all this, and luckily, they still treat me like I am "me". Lean on your husband and childrenwhen you need them. You mean a lot to them.
I hope you are able to have a treatment plan in place soon. I felt much better once I took that first pill. What you are feeling right now is normal, and we have all been there. Please keep us informed of what you are going through. Ask us any questions you have. Don't be afraid to vent, or complain, or say anything you want that is why we are here.
I will keep you in my thoughts and prayers.
(((Hugs))),
Lynne
0 -
Good morning everyone, I hope you enjoyed your Valentine's Day and did something special to celebrate. I have a quick update on DH. He has sepsis again. This time it was triggered during the endoscopy. Luckily he didn't have to go to the ICU this time. He stared responding to three antibiotics pretty quickly. The infectious disease docs are waiting for final results on blood culture to find a more specific antibiotic to continue. He will continue in treatment for two weeks, but he shouldn't have to be in the hospital for the entire time. He still has inflammation of duodenum but it has improved. He will have liquids only then soft foods then in a couple of weeks real food again.He is doing well. I hope this is it. I hope we go home soon and stay there.
Lynne
0 -
Good morning, dear friends, sending all my love.
xox,
Valerie
0 -
0 -
Good Morning all,
Lynne, I was just catching up and saw your post and update. The fact that he is responding quickly to antibiotics and that inflammation is improving is encouraging. He sure sounds like a fighter and knowing you are right there has to be comforting to him. Can you take a few hours and get outside of the hospital? You must be totally exhausted. We are all here for you and pulling for both of you to come home soon.
Susan, You will find a lot of support and information from these women on this thread. You are not alone. We have been through what you are experiencing and understand. Yes, radiation does help with the pain and getting new meds may do that as well. A second opinion is always important to do, even if the plan stays the same. The CT will also give another view and images to help you and your MO to make decisions about your treatment, and he is right. There are other treatments available. It's ok to remember there is no right or wrong way to move forward. You will go thorough different emotions, sometimes even changing in the same day. That is normal. It's good to hear your MO has a tx plan for you now as you sort it all out. I am about 6.5 years out from spine, lumbar, rib and lung mets and 9 years since diagnosis. Some here are beyond that. I'm glad to hear your dh and daughters are supportive. They will be with you as you move forward and so will we.
0 -
0 -
Hi Valerie, it is good to hear from you. What a beautiful picture. It makes me feel all warm inside.
Linds, Maybe I will go for a walk outside tomorrow. Thant sounds like a good idea. Thank you. It is still pretty cold out there today. Oh, and I left my coat in the car. Can you believe it? As you can imagine, this is hard on my DH and I am trying to keep his spirits up. He keeps telling me he wants to get better so he can take care of me. It brings tears to my eyes. He will improve, but he still has a long way to go. He has lost 40 pounds since December and will continue to lose weight until he can begin eating normally again. He has added ensure and boost to his daily routine, but he doesn't describe them as delicious. Some of our sons, DILs, and grandchildren visited this weekend, and more are coming today. DH enjoys there visits, and the grandchildren always bring a big smile to his face. Oh my, I am rambling again. Haha.
Lynne
0 -
Kendrasue. Pretty!
Lynne. I'm glad they know what's wrong with your DH and have started a treatment that is already working. Hopefully he can go home sooner rather than later!
Susan sorry for your dx. The women here are the best. They will be here for you 100%. They're a wealth of information. I agree that a second opinion is always important to get. Once you have the info from your scans you and your MO can put together a plan of attack. It's been over 1 year since since my dx of bone mets to spine femur skull and ribs. Throughout this time I've worked full time I try to live a " normal" life. And I make sure to live my life to the fullest. We'll all be here to support you!
Babs
0 -
Susan, welcome but so sorry you have reason to be here. Our stories are very similar and I too have 2 daughters aged 21 and 24. I was diagnosed also in 2012, took my Tamoxifen daily and thought I was safe at least until I reached the 5 year mark. I was told it would take care of any stray cancer cells and protect me from a recurrence. In 2014 after suffering from a terrible backache a CT revealed the metastasis to my sternum, rib, humerus and L5. My world turned upside down and my husband was overseas at the time. Once a new treatment plan was put in place and I had radiation to all the mets things improved drastically. The only real pain I suffer is from the arthritis caused by the Letrozole they put me on. I just had a CT and bone scan and everything is stable, no new areas and my mets have healed. I take inspiration from all the amazing women on these boards. You will find so much support and gain knowledge you'll never get from your doctors. One day at a time you will get through this. We are here for you when you need us. A second opinion is always a good idea. Please let us know how you make out. Wishing you all the best with your new treatment.
Lynne, I'm so sorry dh has sepsis but it's good he is responding so quickly to the antibiotics. The two of you have been through so much and my heart goes out to you. I'm praying once this is under control that the two of you will be home and things will only improve from here on out. It has to be so hard on him, and so sweet that he wants to take care of you. Hugs to you both!
Kendrasue, so happy to see you posting! How are you? Beautiful roses! Hope to hear more from you soon, we missed you.
Hugs to all, Annie
0 -
Susan after my diagnosis I found the two most important things for me was to find hope, so I looked like a mad woman for it where ever I could. Also to find people that can understand what my mind and body were going through. Who understood the utter loss I was feeling the heartache I feel for my family, things only a person in the same situation can feel. It has been nine months now and overall I would say I am in a better place. People live much longer with this illness now and this gives me hope that maybe they will find a cure and maybe I may still be around for that. Welcome here we are all here to listen and help and understand and maybe where we can give some hope. Hugs to you☺️
0 -
Good morning all,
Susan, welcome to this thread although I'm sorry you have to join us. Ditto on what all the gals said above. The first few months after dx can be a roller coaster, we've been there and we are here for you. I was dx'd Stage IV with multiple bone mets 2 years ago and went for a second opinion and it confirmed the tx plan I was given by my MO. It's important to have a good relationship with your medical team. I feel so much better than prior to dx. You are not alone and ask any questions you may have or rant away. It's a bunch of wonderful supportive ladies on this thread. Good luck with your scan and tx. Keeping you in my thoughts and sending you big hugs. Please keep us posted.
Valerie - I'm so happy to hear from you! How are you? Those flowers are beautiful, we missed you!
Lynn - aw another hurdle. I remember how tiring it can be to be in hospitals when dh was sick and all the stress it brings. If you feel dh is in good hands, take some time for yourself, it will pay off. Nothing like grandkids to put a smile on our face and their good contagious energy!
Rachel - Mac seems to be very comfortable!
0 -
Susan, wow -- my heart really goes out to you. I can't add much more than the others have already said, but I wholeheartedly agree about the need for a second opinion. The fact that your PCP felt an x-ray (which doesn't always show mets) was sufficient 4x in a row when you had continuing, escalating pain with a hx of a sneaky bc doesn't set particularly well with me. I realize that was your PCP and hindsight is 20/20, but it's time for a new set of eyes on your case -- even if you end of taking their recommendations back to your current team, and only cross check with that second opinion breast cancer focused team in the future on big decisions, such as tx changes.
I also have extensive bone mets, and initially my local onc and rad onc strongly urged RT. But after surgery for a very painful fracture and getting on a med for my mets, my pain level dropped so significantly, with UCLA supporting my belief that I didn't really need RT at that point, I was able to save it for future use. Your situation may be entirely different, but I'm just sharing what happened to me to illustrate that no matter how bad your pain is, the meds can make a huge difference. Plus, not all docs think alike, so a second opinion is always a good idea.
One other thing that jumped out at me was your current onc's mention of chemo at this point. While that may be the entirely appropriate recommendation, I couldn't help but wonder if the combo I'm on, which includes the newest targeted therapy available, might be something to consider before jumping to chemo. That combo is Faslodex (monthly shots of an estrogen zapping drug that works differently than the A/I's), and Ibrance.
Also... just wondering as I read your story... Did you have a PET scan prior to starting chemo in 2012? Just curious. And as far as the Seattle Cancer Alliance, is that the same as Fred Hutchinson? If not, FH is NCI-designated, which would be another one to strongly consider for that reason. http://www.cancer.gov/research/nci-role/cancer-cen... Anyway, I'm so very sorry about your re-dx, but glad you've found us and hope you'll stay with us and keep us posted going forward.
Lynne, you amaze me -- with what you're going through, to be so quick to reach out and be there for Susan and others here. Continued prayers that they find the best antibiotic for your hubby. Tell him we're all pulling for him! Thank goodness he's in such good hands.
Valerie, those roses are so beautiful! I can almost smell them from here!
Awww, (((Wendy))). I agree that it's cruel to make you or anyone wait so long for scan results. But we all know that yours are going to be really good. This Friday is scan day for me. Doing both CT and bone scan in the afternoon, so I will also have a long wait, as I'm sure no one will even look at them until Monday or maybe even Tuesday. Ugh.
Happy Monday to everyone!
0 -
Hello everyone and particularly welcome Susan and like others have said once your treatment plan is underway you'll feel better. I'm in the hospital outpatient getting a bone scan to see if Abraxane is working which I'm pretty sure it is as I have no symptoms prayers for good results welcomed.
Aurora0 -
Susan, Welcome to our little corner of BCO, sorry you have to be here, but this is a good place. My story is similar to yours with back pain, sacrum pain & arm pain. PCP told me it was just getting old, didn't think it was anything, even the MO took an xray, said it wasn't cancer. Went to a surgeon about digestive troubles & at the last moment mentioned my sacrum pain, he said we'll get a bone scan & that's when my world fell apart.
But that was 19 months ago & I'm doing quite well. I still get some pain, then I take tylenol/ibuprophen combo which your Dr's may or may not remember to tell you, it sometimes works better than prescription pain meds.
This is the hardest part right now. In the first 2 months, I was pretty sure I was dying almost immediately & started getting rid of stuff (in between scans & Dr's appts) I have never asked my Dr's for a prognosis, I don't want any numbers to somehow become a self fulfilling prophesy.
Please come here & ask questions, the women here have helped me tremendously. Even when the onc's did rescans too soon & told me I was progressing, the women here assured me that they had done them too soon to tell & sure enough they were right.
Cheers, Dee
0 -
Good morning all!
Lynne, sorry to read that your DH is still having problems, esp the sepsis. I hope he's on the mend, because 40 lbs lost is scary. I agree, getting out a bit will help, but I'm not sure how hospitable the weather is where you are. ((hugs))
MomATT, How is Dani today? I had terrible edema in my lower legs when I was having chemo. It did go away without treatment, but it's very frightening. Where you able to get her platelet numbers?
Terre, I hope you & DH & your chickens are ok. I read about the earthquake, it's always a worry here too.
Wendy, I know how difficult it is waiting for test results, I think it is cruel to make us wait. Can you call your MO's ass't to find out?
I hope all of you are doing well & staying warm if you're being hit by the big late winter storm. Yesterday DH & I went with our neighbours, clam digging & picking oysters for dinner. It was fun, mucky but fun. Another thing off my bucket list!
Cheers to all, Dee
0 -
Hi again. I wish I had news that my brother has improved, but unfortunately the past few days have been just horrible for him. He has been running a high fever since Friday night, lots of pain in his back that he can barely walk. Just pure exhaustion to the point where he can hardly talk. He has been crying, scared, emotional. My heart broke for him more than ever. He hasn't had treatments for 3 weeks, but for some reason all of this started on Friday. He has also been coughing, which makes me think he might have caught some infection. He refuses to go to the hospital. I want him to at least call his doctor and see what she thinks. Tomorrow he has chemo scheduled and there is no way I am letting him go for the infusion like this. I can't believe bone mets can cause so much pain. Or maybe it's something else, I just don't know. I am scared for him, but I put on a strong face in front of him so he doesn't feel worse. My poor mom has been a mess seeing him like this. She wants to help him too but she is not strong enough to do everything. Please keep him in your prayers. Thinking of you all.
0 -
Loving, I"m so sorry about your brother. Is he on meds for the pain? If so, he may need something different. Or he may need to take more -- you know, the old advice about not letting the pain get ahead of the meds, so that you end up chasing it, which isn't nearly as effective as taking the meds on schedule to prevent the pain from ramping up. And that high fever. He may not want to go to the hospital, but he really should report what's going on to his onc who may want to RX an antibiotic if she suspects some sort of infection. This sounds like a classic case of a man wanting to minimize his symptoms, hoping they'll improve. But with cancer, I don't think that's the best approach. I think his onc needs to know what's going on now, so that he won't end up not being able to get what sounds like a much needed chemo infusion tomorrow.
0 -
Loving, I completely agree with Deanna. Your brother needs to see or speak to his doctor about the fever. Bones mets do not usually cause high fevers, so something else is going on. He is in a lot of pain, and the doctor should also be able to help with that. I know you can't force your brother to go to the doctor's office, and I can only imagine how frightened and frustrated you are. If your brother won't make the call, maybe you could let his doctor know what is going on. He might not be able to give you advice withou talking to your brother, but it is worth a try.
I have prayed for you and your brother and will continue to do so. Please keep us informed
Lynne
0 -
Loving, I agree with Deanna & Lynne, somehow you have to get him to call his MO. They won't let him have an infusion with a fever. And the thing about pain is true as well, somehow he has to get ahead of the pain, chasing it isn't good. Sorry you & your mom are going through this. ((hugs)) Dee
0 -
Loving- sending prayers for your brother-he really needs to contact his doctor to find out what's going on.
Aurora- Hope your scans turn out well! Let us know when you get the results
dlb-Good luck on your upcoming scans!
Snowy cold day today. I had lunch with a woman who I grew up with and hadn't seen in 35 years. Ends up she lives right near me in NYC. We've both lived through so many tragedies, happy times and crazy times. We laughed, we cried, and hugged a lot. It was great. I'm so happy to have her back in my life. While together we face timed my sister and my 94 year old father who was so excited. What a day!
Babs
0 -
Thank you ladies for all of your comments and encouragement. I had my CT today and meet with my oncologist tomorrow to review results. I think once I have a plan in place, I'll do much better. He actually called me today to say hi and see how I was feeling, any questions, and to tell me he received tumor marker and they were high. He didn't realize I'd already gotten the CT scan and made an appointmen. I feel a little better about him as he does have a peculiar bedside manner.
I so appreciate all of you who responded to me. It brought some reassurance to me today. I wish I could acknowlrdge each and everyone of you, but every word was heard.
Very grateful,
Susan
0 -
Hello I'm new in the forum. Firts of all hi to everyone
Just want to share with you that my mother has swelling in the ankle. We were told that this was caused by chemotherapy. She has low blood protein duw chemotherapy and as she has been with serum bags, the body was not able to eliminate the liquid excess and it acumulates in some parts like ankles.
Her Ankle is just "big". It doesn't hurt and it isn't red
(sorry for my English)
All the best
0 -
Hi Maria,
I didn't get chemotherapy, so I can't offer an opinion about your mother's side effects, but I just wanted to welcome you to the group.
Don't worry about your English. It seems pretty good to me, and is much, much, much better than my Spanish!
Kathleen
0
