Bone Mets Thread
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I agree with Z MJ is a large part of my alternative treatment and every time I bring it up to my onc it's pooh poohed. Also vitamin c infusions and anything else alternative. So I don't ask when she is willing to prescribe estrogen cream for vaginal dryness I'm good. I'm 90% hormone positive and don't give me that quality of life crap. I want it longer not shorter. So I don't bring up anything anymore give me my meds and talk about interactions that's it
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Q - I do feel alone with this disease, or I would if I didn't hang out here. I don't want to try to drag my family into this too far, they are my refuge from this thing. In any case, I get what you are feeling. I am pretty confident this group can be a community of support for you and you won't feel alone here. It has been a great help to me.
If you like to move, I hang out on the Stage IV Fitness Forum, where we deal with the challenges of maintaining an exercise routine when we are constantly recovering from something.
Welcome.
Wendy - Just got out of my MO appointment. Walked the minefield you describe ... we had a pleasant conversation about the Standard of Care stuff she understands and carefully avoided everything else. Given that the appointment is 20 minutes, we barely have time to cover the basics.
>Z<
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zarvonka,
All scans were good brin mets either gone or shrinking cancer in body stable I'm happy with trails though I would a little upda
Paula.
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Q- Welcome. I think you will like this group. So many very intelligent, funny, and compassionate people. Wow, it's quite a road you have travelled.
You won't feel alone anymore. Everyone here gets it and one can talk about anything.
Love, MJH
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Go Paula! Great Scans! How are you feeling?
>Z<
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Welcome Q . Good news Paula.
Today I met a friend and we went for a walk. I had to stop due to back/hip pain. I stopped for groceries... big mistake. When I got home I couldn’t walk up the steps leading with my right foot. It scared me something awful. Pain was intense and I dragged my leg. It took two hours and an extra Advil but I can move pretty well now.
This isn’t the side with most of my mets. I do have some in sacrum and spine. Going to doc at the end of the week for infusion plus shots. So hard to explain. I guess I’m practicing on you. I do have some arthritis but I panic thinking I can’t walk at some point. Also I get dizzy when I lie down or move to quickly. Could it be from my cervical mets?
I don’t expect answers. I just needed to say it out loud. If I tell my family they ask what’s for dinner🙄
Take care
Maire0 -
Marie,
I think those are symptoms you need to share with your MO. Maybe even before your appointment so he/she can be ready to discuss.
My MO made an interesting comment a couple of visits ago. (I’ve recently had progression and have just started a new treatment). She has asked about my family before. My DH often accompanies me, especially if things are changing. Anyway, she said my kids (both grown) are welcome to any appointment, but to let her know so she can allow more time. Then she asked if they are aware of every that’s going on. They are. She said it’s difficult when family members come in and think “ mom just has breast cancer” and she has to bring them up to date. Thought that was interesting.
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Hi,
Thank you for the welcome. I am pretty active--when I can be. While I have bone mets, I still ride my horses and do the best I can at continuing with endurance riding with the horse that is "My Heart" horse. I am starting a youngster who I got about 6 months after my last dx. He is "My Hope" horse and quite the cutie. I think they both know I am sick and they take care of me which might a weird concept for those who do not have horses but it is true.
Maire-- I know that feeling where you have to just say things out loud so to speak. And how you cannot do it with your family. One time I told my husband I was going for an MRI because they suspect a recurrence and the next thing out of his mouth was asking me what I wanted for dinner. I think many men just block. I have however, taken my son with me to appointments. He has cerebral palsy (and epilepsy) and he is just a bit more understanding although his 'need' for me is stronger.
I tried out medical marijuana this past week and it certainly does help with the pain. I was always afraid I would get "high" but this stuff does not do that at all. Maybe that might be something for you??
I doubt I will read all the pages in this thread so if I ask questions already answered forgive me in advance.
Q
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Although I don’t have many physical issues yet, I do stay so very fatigued. But today... woo wee... I don’t know if it’s my ripe old age (I’m 40!), my huge body weight (I’ve gained 60 lbs since original dx 9 years ago), or the illness (stupid MBC!), but I CLEANED my bathroom today, everything from light fixtures to baseboards along with all the regular stuff, and I’ve been barely able to move since. My whole body aches. Never mind the tiredness. So much fun.
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Thanks for the advice... I've never had accupuncture before. ..is it painful? The last place I went to for a massage got creeped out by my bra. I need to find a better place.
I, too, have a family that I can't talk to about mbc. I try to be realistic and they think I'm being negative. So I keep to myself mostly. The aren't very careful with what they talk about either....my mil asks me about my retirement plan almost every time I see her. My sil talks about her friends who have "beat" breast cancer. Very frustrating.
Even if I don't say much here - I get comfort in reading everyone's posts.
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Swiss, fatigue is a HUGE issue for me also! Really struggling!
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Hello all,
I have questions about bone mets and what it would feel like. I have had this pain in my lower back for 4 days now and it feels like I threw my back out, which I have done before many times but those other times I have known what I have done to cause my back to go out. This time I have no idea why it hurts and it is making me nervous. I have done stretches that have helped me with low back pain in the past, but they aren't working this time. I have taken hot baths to try and relieve the pain but that also has not helped. My PCP checks my blood every 6 months to see if any of the levels have increased, and I just had that test done in September and everything came back normal. But my MO says blood work wont detect mets. ???
Anyways, I was wondering if those of you who have had mets and have had it in your spine, lower back, could explain to me what it felt like? Would it feel any different than throwing your back out? And how does bone pain feel different than say a pulled muscle or pinched nerve? Would I know when the pain is in my bones and when it's not? My PCP says I would, it would be a pain I never felt before and not like anything I have had before. Is that true? The pain seems to be worse at night, I feel my back is more stiff at night than during the day, but could that be because I am less active at night than I am during the day? The pain is right at the base of my spine on the left side only and it travels down my butt and into the back of my leg. I'm just really scared that I don't remember doing anything that would cause my back to hurt, it's been 4 days and it's still not better, and the pain is worse at night which I read is a sign of mets.
Any and all support anyone could offer me would be greatly appreciated. I am freaking out here!
Thanks!
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To any of you who may be considering acupuncture, I have not found it to be painful at all. I have had a number of sessions to address symptoms of fatigue, dry mough and neuropathy. I find it to be helpful. When I was initially diagnosed with bone mets, the thought was that massages were out of the question. Now my MO says it is ok as long as the massage is done by someone who has been trained to treat patients who have medical issues. MSK, where I am being treated, offers both acupuncture and message therapy ( for a price) for its patients. If you are on Medicare, acupuncture is usually covered for minimal cost and with no limit on the number of treatments.
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@Misty879Hi Misty! I have not been dx with mets yet, but some of the women here tell me it can feel like a lot of different pains. I hope you get answers from your onco. Prayers and hugs to you
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Paula,
So glad for you, good scans and mets shrinking.
Wanda
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Misty, I never felt anything from my hip bone met, complete surprise and recently I’ve had some strain/pain in my lower back, which I suspect is from spending several days traveling by car. I had scans a few days ago and there’s nothing there, so often the simplest answer is correct. I would let your doctor know regardless
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Misty,
I did have lower back pain like you are describing before mbc dx of spine mets. I kept thinking it was weak muscles, or my bed, or the sofa.
But, as you said, it can be many things. Do get it checked, but don’t panic.
Hugs.
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Misty my bone mets before diagnosis felt muscular - I spent weeks with a phsyio treating bursitis that was actually a large met in left pelvis. Now I can tell the difference but its difficult to explain, a twinge in my spine sometimes, and ache almost like shin splints, and the saying "I can feel it in my bones" is true - if a big summer storm is brewing my mets in my arms and shoulders really ache! None of this is painful to the point of needing meds though, I find I need pain meds for referred pain as I muscles take strain compensating for the bones. One up side of cancer is I've become a lot more attuned to what my body is telling me!
Good luck and as others have said, get it checked and don't panic - bone mets is a long road to walk.
~K.
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Misty, your pain sounds a lot like mine was when a disc herniated and was sitting in my nerve channel. Ouch, if that's what it is. But you need to tell your Mo, so he can check it out. If it is a herniated disc, it is a relatively simple surgery to clean it up. I can tell you that when I woke up in recovery, my leg pain was completely gone! Get it checked Asap.
Q, I am so sorry that you have to be here. But, I am so happy to see a fellow horse rider! No one else understands how we feel about our horses! You ride endrance! I bow before you! Wow! I showed Tennessee Walkers and Saddlebreds before Mbc diagnosis. I had to stop mostly because of the stress and all the traveling. I eventually whittled down to my 2 heart horses and now I trail ride and camp with Dh. I also will do a clinic here and there for something that I find interesting. I tried the actha, but you see what happened to them. I did have one fun time with them, doing the obstacles at a good pace! I love a challenge! Your horses will keep you sane through this minefield. I know mine do.
Paula, good news!
Hugs and prayers,
Claudia
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This is not necessarily a reply but the doctor has tried me on fentanyl patch, morphine, dilaudid and now is going to try methadone and it is scary. Has anyone tried this methadone.
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Misty, I've had extensive bone mets all over my skeleton for over 7 years. Your MO's statement does not align with my experience, as blood work was the first clinical indicator of my metastases (and has continued to be the first indicator of progression through six lines of treatment). First, my tumor markers went from 14 to 96 in a few months, but that was not the only clue. With actively growing bone mets, the bone destruction causes alkaline phosphatase levels in the blood to rise. My onc and I watch my alk phos levels very closely.
Don't assume that what you are feeling is bone mets, but do get current blood work. If the pain persists, that is justification for a scan.
Bone mets, in my experience, do not feel like muscular pain. You know that wincing pain you get from a pulled sciatica, the flash of sting that makes you suck air through your teeth? That is not what we're talking about. Bone mets pain does not really come and go; it is a steady, grinding ache that bores at your core. It does not improve when you lie down or shift positions.
My first physical indicator, before my bone mets were discovered, was a persistent discomfort that I could not identify nor relieve. I would sit down to read and my hips would ache, so I would stand up hoping that a shift in weight or muscle strain would bring relief-- and the pain would not change. I would lie down to take the strain off my back, and it just continued to ache. Going for a walk could be hell. (When my bone mets have been stabilized by treatment, I have had great relief from the pain. I have had whole years when I took vicoprofen round-the-clock, followed by years when I needed very little pain relief.)
That being said, if your current pain feels like muscle pain, I would say there's a good chance it's muscle pain. But there is no reason to spend weeks in anxiety over it-- ask for surveillance. All the best to you!
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To All,
It is with a very heavy and sad heart that I tell you that LindaE54 has passed away peacefully. Her sister and I have been in contact for awhile now. She became quite ill suddenly and passed away yesterday afternoon at the hospital. I'm having a hard time with this as we just talked yesterday. She leaves behind a loving sister, niece and grand nephew who she loved very much. I will remember her kind and generous spirit.
Linda
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Lindalou. There are no words! I am so sorry to hear about LindaE54. Pleasesend my condolences to her family. I hate BC!
Babs
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Lindalou I don't know what to say she was from Quebec wasn't she? I'm shocked at how fast this disease can steel us away. I hate this disease so unjust...may she rest in peace.
Lulubee your post is so hopeful you are so strong😊.
So many new names on this thread welcome all. I've been reading along but haven't had much to say lately. It's three o'clock in the morning here right now so I will try and get some more sleep lol. I wish everyone a peaceful painfree weekend
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Has anyone heard from Patty? I just read through Linda's old posts. She was so caring to us all I had no idea she was going through such a rough patch.
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Lindalou, Thank you for letting us know. I cannot find the words to express my feelings. I am so sad to hear of Linda's passing.i just heard from her two days ago. I knew she was failing, but I did not expect her to go so soon. She was such a special person. This is such a big loss. I will miss her. I wish her sister, niece, and grandnephew peace and comfort.
Lynne
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What?! We PM’d 3 days ago, she was trying to get an update on Patty (hospitalized with an infection still, I think). Sad and sudden but peaceful at least.
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Linda - Devastating news. I am so sorry to hear this.
>Z<
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Claudia, it sounds like you do plenty with your horses. The stress of endurance ...that is the definition of endurance i guess... is sometimes more than I want. My mets are in my back and lungs so I have weakness there--the two areas one needs to do that type of riding. I don't know how long I may be able to continue but I take each day as it presents itself.
I do think that horses somehow help people to get through the crap of life so much more easily. I honestly don't know what I would do without my horses. One of them seems to know exactly...I mean exactly how I am feeling at any time and what is worse is that he develops his own pain--like an ulcer-- when I am not well. One day before a ride up in the mountains, he both coliced and tied up. We thought he was going to die right there. Give him a huge amounts of meds etc. And while we played on the ground, his head in my lap, tears streaming down my face, I TOLD him it was not helping me at all for him to take on MY illness, that I needed him, that he was my rock and my heart and I would not want to live without him. I swear --within about 3 minutes after I stopped talking, he got up, shook himself and well, was not fine but got over the worst of it. Of course, we didn't do the ride but I still have that horse and he still reads me the human components of my family.
Q
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Linda, My heart is so heavy... May she rest in peace. My sincerest condolences to her beloved family.
Hugs and prayers,
Claudia
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