Bone Mets Thread
Comments
-
Hi Everyone, I don't post much but follow all of you and pray for you. If any of you are inclined to prayer, I could sure use some. I got scan results yesterday and have failed my 3rd treatment in 14 months. An MRI revealed that 70% of my tibial marrow is consumed by cancer and 70% of my cortical bone in the tibia is gone. I started with 2 lesions in May 2017 and now there are too many to count. I meet with the oncologist this morning. I need something to work. I have kids at home, youngest just turned 13. I feel so hopeless.
Thank you all.
Mary
0 -
Marylark,
My prayers are certainly with you. Hugs too.
0 -
Mary-I am so sorry! I hope your next treatment works longer! Hugs and prayers going out to you!
Lynne
0 -
Goodmorning. I have a couple of questions regarding skull Mets, 1) can you feel them, and 2) do they hurt?
0 -
Mary, do NOT give up hope! There are so many new drugs on the market that they can still try!! Hang in there, I'm praying for you!
N01-2NV, the only way I knew I had them is because I can't hear out of my right ear.
0 -
Marylark. Sending prayers and lots ofhugs to you. Maire
0 -
Prayers for you, Marylark.
Are you on Xgeva or other bone med?
0 -
Marylark, I am lifting you up in prayer. I hope that your medical team find the treatment you need. Please let us know your oncologist's plan after you meet with her/him today. (((Hugs))
NO1-2NV, I used to have tingling sensations on my skull. I thought it was from Ibrance, and I still think that what caused the tingling. I do have a couple spots on my skull that feel like bruises if I touch them, and lately they sometimes hurt a bit. Actually, hurt is too strong a word. I feel slight twinges there sometimes. They do seem to be where my bone mets are, but I have other areas of my skull with mets and no pain of any kind. I guess that doesn't answer your question, since my response is "yes and no". I look at skull mets like mets in any other bone. Some hurt, some don't. They won't seep into my brain or anything, so I am okay.
Hugs and prayers from, Lynne
0 -
You can apply for the National Park Access Pass on-line too. I only sent in a letter from my doctor confirming my diagnosis since I haven't yet applied for SSDI, received my pass about two weeks later. Finally feeling well enough to travel so heading to Grand Teton NP and Yellowstone in a few weeks, want to do it while I still can. https://store.usgs.gov/access-pass
I mostly just lurk on this thread since my extensive bone mets haven't really caused me much of a problem yet (I have lost a half inch in height so far, as others have mentioned) and my last scan in January showed sclerosis which they said was signs of healing. For the past six weeks or so I've had intense pain like a cramp in my lower left rib off and on, and now I can feel a lump on the bone. It doesn't affect my breathing, no pain in my lungs or heart, so I've been downplaying it. I don't think it's cracked or broken, but the lump makes me wonder if it's time to start taking it more seriously, although I guess it could just be sclerosis. Anyone experience anything similar?
0 -
N01-I have 5 skull mets. As the other Lynne said, only if I touch them. There is one in the middle of my forehead, that is the only one I touch. I rub my head sometimes, and the others don't hurt. I have to press for it to hurt.
Lynne
0 -
Thanks for your kind answers. I have a very sore spot on the back of my head with a lump. I have my fingers crossed that it might just be a skin eruption sx due to the A/A that I am currently on and that it will go away in a week or so but these days nothing surprises me.
0 -
Marylark---
You are in my prayers. Please pray for me. I am having a hard time with this right now.
0 -
Candy, Are there any particular issues that are causing you problems or is it the entire stinking MBC "experience"? Have you experienced progression recently? Are you having discomfort from SEs? Are you feeling that people aren't there to support you? Is you oncologist or his/her attitude or treatment not what you hoped for? Are you scared or depressed? My prayers for you are unconditional and have already begun, but I was wondering if there is anything we can do to help support you right now.
Hugs and prayers from, Lynne
0 -
Mary...definitely lifting you up in prayer!!!
0 -
Marylark and Candy, you are both in my thoughts and prayers. Marylark, Just know that there are so many new treatments popping up that you should be able to find one that works. It never ceases to amaze me how many more options there are today versus when I was diagnosed with MBC six years ago.
Lynne's, You both are in my thoughts and prayers as you deal with progression and possible progression. Please keep us informed. I also loved all of your pictures!
Gracie, I am glad that you had your last radiation therapy today! As Z says, you got this!
Claudia
0 -
Lynne-
Thank you!!!! Your concern brings tears to my eyes. Just all of it getting to me. I am due for a CT in next couple of weeks and we all know that causes anxiety. I went to a new MO yesterday--my old one left our town. She is nice. But some of the things she said were sobering. Nothing new, everything I already know, but it just made my thoughts come to the surface. Then I went to my nephews birthday party last evening and I wonder how many more I will be around for. I don't really have a support system---at the party everyone just ignored me----and no one to talk with about my fears. I just go through my days saying under my breath, "God help me, God help me. Thank you for caring.
0 -
Hi Everyone. Thank you so much for praying for me today. I am so grateful. It has been a rough year and the last fail just hit me hard as it was recommended by Foundation 1. 3 months on Ibrance, 5 months on Xeloda and 9 + weeks on Afinitor/Aromasin, each with exponential new bone mets.
I met with the oncologist and he is looking into some trials as well as good old weekly Taxol. It was fairly successful during my primary cancer treatment 3 years ago so I'm ok with that. The goal is to stabilize the disease and figure out something after that.
I can't start anything for at least 3+weeks because I have to have surgery to put a rod in my tibia. The surgeon just went on vacation until the 23rd so that is the day I am scheduled. I have to be super careful until then.
I came away from the doctor feeling much more hope. Thank you all for praying me through one dark day. I'm so grateful.
Candy...I'm praying for you right now that you have peace and feel supported. If there is any way I can support you from afar let me know. Sometimes this is a very lonely walk. My daily self-talk is also "God help me" all day long.
Love to all,
Mary
0 -
Candy, This can be overwhelming for everyone. None of us knows what is coming next or when. We all try to adjust the best way we can. You have a lot being thrown at you all at once. It is difficult to change oncologists, especially if you have a history with someone who has earned your trust and with whom you have been comfortable. If your new doctor doesn't suit your style, try to find one more to your liking. Oncologists are just people, and each one has a has a unique style and approach with patients. A good fit for one person isn't always right for someone else. Don't ever forget that you are the most important person in that doctor-patient relationship. They are there for you, not the other way around. As far as CT scans are concerned, we all dread them, some more than others. I try to be optimistic. I go to my scans hoping that the reports confirm that everything is stable or improving. I would say that I don't get nervous, but that would be a lie. I act all cool and calm on the outside, but inside I feel like jello - everything is swooshing all around. I have had many scans during the past three years, and I have had many more good scans than bad ones, so maybe the odds are usually in our favor. Even when I have had news of progression, once I see my MO and have a new plan in place, it doesn't seem nearly as bad as I had imagined it would be. I just try to pick myself up and move forward. Let us know when you are going to have your scan, and we will be pulling for you and praying for good results. We will all help you through it. Like you, there have been times when I wondered if I was celebrating my last holiday, going on my last vacation, or planting the last plant in my garden. I soon learned that it didn't help to think that way. First of all, the summer, Thanksgiving, and Christmas that I thought would be my last are long gone. I lived through them back in 2015. Now I try to enjoy each special day and try to find something special about each ordinary day. It helps me to focus on the joys in life, however little they might be. I am not a crazy person who is laughing and happy all the time. Nope, I still get sad, angry, afraid. They are all part of life. The way you feel is normal. Unfortunately, you can't do much to change other people. Sometimes, in fact often, people do not know what to say to people like us. They are afraid they will say something wrong, so they say nothing. Some people are afraid of people MBC because we remind them of their own mortality, of the fact that it can happen to anyone including themselves. If you have no one to talk to, have you considered counselling or a support group? It might help. The only issue I would mention about support groups is the fact that it is sometimes difficult to find one specifically for MBC patients. Well, I have lots more to say, but I know this post is already too long. Please know that we are here for you. No questions are off limits. No fears should be left unsaid.
Hugs and prayers from, Lynne
0 -
Lynne-
I will definitely let you and the group know when the CT is scheduled. I think you are correct about why people act like they do. They don't want to say the wrong things or they are reminded of their own mortality when they see me. Also I think some who don't keep up with my situation think I am better--over the cancer. I look ok from the outside. I have tried to seek out support groups, but there are none in my area. I am seriously thinking about counseling. But I have talked myself out of making an appointment because I think "The counselor cannot cure my cancer or wave a wand and I suddenly have a good support system". I go to my MO appointments by myself--my sister has went to 2-3 of them with me in the year I have been fighting this. Another thing getting me down is I just 'celebrated' my first anniversary of being diagnosed (first thought Stage IIB) and on July 11 is the first anniversary of my mastectomy. I think I have held up quite well over the last year. I just wonder what the next year will bring, or the years after that (I hope I have many years to come). So many more thoughts going thru my head, but I will pause for now.
Marylark-
Keep us informed of the decisions you and your MO make and how you are doing. And take care of that leg over the next 3 weeks. Crappy you have to wait for the surgery.
I know I have support from Colorado and New Hampshire, as well as all over the US and beyond. God bless this site.
Continued mantra---God help me, God help me.
0 -
Mary, Candy, and Lori, sending up prayers for clarity and calm in this turbulent time. I'd like to add one more tool to think about. I was selected to participate in a guided meditation study and found it incredibly helpful. The one I was assigned is called Headspace, but there are several options available. Headspace offers several packs, from basic how-to to cancer-specific programs. It's a 20 minute a day gift to yourself!
0 -
How does Guided Meditation work? And how do you learn to do it?
0 -
Claudia-thanks! My MRI came out fine today. No cancer in the brain. My tumor markers are up to 305 from last week's 258. She wants me to have the CT and bones scans this month instead of waiting the 3 months which would be August. Chemo on Thursday. Hope all is well with you and your husband.
Lynne
0 -
Great news, Lynne!
Candy, I didn't know anything about guided meditation before I started. I'm sure it takes many forms but this program is a simple app I loaded onto my iPhone. If you can find 20 minutes of quiet time a day you can do it. Headspace (and I'm sure others) suggests you start with a tutorial that guides you through the basics. Essentially it's a lovely voice instructing you how to settle in, get comfortable, breath, close your eyes, and then focus on breathing for several minutes. As you progress other skills are folded into the sessions, and then how to use the skills throughout the day. I found it really useful and helpful.
0 -
Thanks, Jaylea!
Candy-I try to meditate once a day. I usually do it before I even get out of bed for the day. It really is a nice way to start the day. I do it at night, when I can't sleep too. It just slows down the thoughts in my head and relaxes me. I've been doing it since high school (a very long time ago!).
Lynne
0 -
Hi All,
I'm sorry to hear of the struggles folks are having. Marylark, I understand the frustration with moving from treatment to treatment. I'm in a similar situation. Fortunately I seem to have a slow moving cancer (almost 16 years between original diagnosis and recurrence) but it appears to be a double edged sword as nothing seems to be able to stop it in its tracks. So far, in a year and a half, I have failed Taxol, Arimidex/Ibrance (although, in all fairness my blood just couldn't tolerate the Ibrance well so perhaps it didn't fail), Xeloda and now, I'm beginning to suspect that Faslodex is failing. I'm having worsening discomfort in my chest/abdomen on the right side and my right hip/groin is starting to give me heck.
One question, how soon should you get a radiation oncologist involved for pain from bone mets? At this point my hip is still more of an annoyance - worsening persistent ache that is more of a problem at night but also noticeable during the day. It is not interfering with activities at this point but should I wait until I am having severe pain or consider zapping the little bugger now? I'm never quite sure what approach is best. Any suggestions would be appreciated.
Lynne, sorry to hear about the progression. Hopefully the latest treatment will beat things back.
Hugs to all. Pat
0 -
Hi Pat,
I'm sorry we're in the same boat. It is hard when nothing works. I had two lesions last year and now have so many I can't count. It has been quite a ride.
If you are having pain it is a good time to check in with a radiologist, even just to establish a relationship. Are you being followed by an orthopedic oncologist as well? I'm glad I am so that he can head breaks off at the pass. I'm in a pretty serious situation which I wouldn't have known about if the orthopedist hadn't insisted on an mri. Cancer in 30 cm of my tibia and only 30% of my cortical bone left. It didn't show up on xrays.
I hope and pray that faslodex works longer for you.
Hugs,
Mary
0 -
Hi Mary,
We don't have orthopedic oncologists here. It's interesting that an MRI provided more information. It's another area I struggle with. Bone scans are completely useless for me. (The report always comes back indicating that "bone scans significantly underestimate the burden of disease in this patient:.) Even CT scans don't seem to be totally definitive. It did show significant progression in July of last year when I was still on Arimidex but has indicated stable ever since - and yet I have increasing pain in my right hip - go figure. Another issue for me is that my bone mets are sclerotic so it's difficult to distinguish between healing and new mets. All very frustrating when access to certain scan modalities is challenging - we have big wait lists here for MRI and PET.
Trying to stay positive that Faslodex is continuing to do its job but it's tough when I have these reminders that the cancer is there!
Thanks for the input. I appreciate the support.
Pat
0 -
Don't wait too long, ladies. That's what my RO said bcuz they just keep getting bigger and harder to treat.
My spine has been radiated 3 different times. I waited too long when the pain and numbness caused my bowel incontinence, so a word to the wise.
Still have to wear depends and plastic pants for blowouts when it gets bad.
L
0 -
Thanks Lita. Those are words from the wise! I always fall into the trap of having to be "near death" before I seek help. Old habits die hard!!!
Thanks. Pat
0 -
Hi Everyone,
Has anyone been in the Radium 223 trial? My oncologist is looking into it for me and I'm meeting with the trial director in 10 days. I'm trying to decide whether to give it a try or go to taxol. I can't afford another big progression.
Thanks,
Mary
0
