Bone Mets Thread
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Leapfrog. After above compliment to your post I had to go back and reread it. Well said indeed !!!
Hills. Lol. Did you say not many new posts ? Don't know that I can add much to the above bt just encouraging you to just stay posting to the threads that interest you no body can carry all threads. They have truly been my lifeline . Will always find someone here who has been thru whatever you are going thru and gladly give their first hand knowledge. Stay away from Dr google and stats.
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Hi. Looking forward to getting to know others on this site. Don't know anyone with bone mets personally. Have had two cycles of letrozole, Ibrance and xgeva shot. Had extreme bone pain prior to diagnosis. Now have no pain at all since first two weeks of treatment in early July. Yay, drugs! Previously had cancer 10 years ago and amazed by how far treatment options have come. Planning a trip in Sept. and Nov. now that I feel better. Would like to hear others' stories of improved life quality on these drugs.
Anyone know how I get my therapies, diagnosis, etc. to show up? New to posting and don't use computer that much.
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HAPPY TUESDAY!! HOPE EVERYONE IS HANGING IN THERE. I LOVE THIS PICTURE OF A PAIR OF GIRAFFES I TOOK IN NAMIBIA, AFRICA IN THE EARLY MORNING SUNRISE. IT ALWAYS MAKES ME SMILE. HUGS TO ALL. ANITA
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Anita. Your picture made me smile too
Lady Olivia. Glad the drugs are working. Enjoy every minute that you feel good!
Leapfrog. Great post indeed. In keeping with what you wrote I am going to Israel tonight for 2 weeks. It's a trip I always put off but not now.
Bab
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lady Olivia. Go to your profile and answer the questions.
Leapfrog. Thank you
I share your stories with my husband. The love of my life. He weeps with me and for me. We are high school sweethearts. We both are gaining strength from your experiences. Thank God for you al
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Leapfrog, such wonderful advice. Are you a writer? If not you should be. Those steps are so true and something to focus on instead of stats etc.
I have my next Faslodex on Friday. We are leaving for the beach Saturday. Having family visit and this year I will enjoy and not worry about silly things like dinner etc. I am a little sad that I probably won't swim in the ocean my favorite thing to do. A little afraid of falling with all these new mets but I can sit on the beach and put my feet in. This is such a blessing for me. I will have more time to talk and enjoy my family instead of the old me who would be stressing about nonsense.
Thank you all for helping me get my head on straight.
Maire
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dani, treatments default to private, check it and set it to public, if that's the case
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Hey everybody, hope everyone is having a good day.
Babs, I'm so happy for you that you can travel while on drug trial. New scenery is good medicine.
My last PET scan showed stability, which was great news. However, I have a lot of existing bone mets, particularly in my pelvis, a lot of bones with names I can't pronounce. Managing the pain is a struggle. The loss of mobility feels worse than death some days.
I rotate pain meds every year or so. My last pain medicine, methadone, lasted for almost 2 years before I developed a tolerance. I went back to Oxy about a month ago. It doesn't work on as many pain receptors as methadone. Right now I'm at 60 mg 3x a day, plus breakthrough. I'm getting some relief but still hurting. My left hip and sternum hurt the most. I've had spinal radiation in two places for pain, but I hesitate to do it again. It caused esophageal nerve damage and nothing can repair it. I can no longer run or do anything that requires exertion without feeling that I'm suffocating; exhales require much effort.
Beyond physical pain, the limitations of bone mets hurt. DH has taken up endurance sports and works out 2x a day, 100-mile bike rides, 20-mile runs. 7 hours a day devoted to something I can't do. Pain is such an isolator. I'm trying not to be angry over what I can't do, trying not to be angry that my state doesn't allow medical marijuana.
I have a great pain doctor. She works at our local Hospice/Palliative Care Center. We are using everything possible.
I ordered some CBD liquid (hemp) and tried a dropper full last night. It tastes like rot
For the moment, the pain has me immobilized and I'm so frustrated. Even the comfort of a warm bath is off limits now because of my skin. Opiates release histamines, so about 80% of my skin is red, raw and itchy. No matter how much moisturizer I use, my skin feels like sandpaper. Too much bathing makes it worse.
Help me out. Tell me how you manage.Do any of you with pain find relief outside of opiates. How do you cope with loss of mobility, from a psychological perspective?
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babs. How exciting. !!! A trip to plan and be enthused about it. You go strong woman
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LOVE seeing the giraffes when I logged on! Thanks for sharing your amazing photos!
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Tarheel...you are AMAZING! Almost six years with St 4...wow!
I'm only 16 mos out from dx, and I hope for a couple more "decent" years. Yes, pain is a constant struggle. I'm dealing with crippling headaches right now and don't want to resort to my med marijuana until I know what I'm dealing with. Got bloodwork done today...praying that headaches are just from low rbc count, but seeing the opaque grey spots in front of my eyes has me concerned. Sing MO tomorrow.
I use medical marijuana for my pain because opiates don't even touch what I experience. So sorry your state doesn't allow it yet. One of my other cancer friends (lymphoma) said within 10 yrs, MM will be regularly Px'd because it helps w/so many symptoms.
I can't take baths because it would be too hard for me to climb out. I use a shower messager for spot Tx. I also have a La-Z-Boy chair with heat and message. I practically live in it. I use balms and rubs, too, but they only provide very limited relief.
With the hemp oil, put it in some strong juice, like cranberry or cherry, to mask the gag-worthy taste. CBD oil can have a pretty awful taste, too.
Sorry I couldn't be more helpful.
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Babs - I can relate to juggling crazy scary medical drama's while traveling otherwise leading a pretty cool life. Just finished a summer of almost constant travel.The crazier the medical stuff, the more important it seems to be to do the things I want to do. So I just frickin get on the plane pills or no pills, diagnostics completed or not. You have it much more together than I. I am so glad you are going to Israel.
Hi Wendy. Here are a few things I might consider if I found myself in your happy situation … with cancer pretty much controlled.
- Trials involving abemaciclib which I am hoping will be actually different and better than Ibrance. Ideally with immunotherapy, but that may be a ways out.
- a simple routine of hormone suppression, good clean living and some anti-cancer mushrooms and probiotics.Monitor, see what happens.
- low dose chemo
Cureious. Eclipse was awesome. Bill Nye was in the departure lounge looking like that caricature of an old tired santa clause after christmas... every thing minus the bottle of scotch. Probably only because it wouldn't make it through security. He was sunburnt and beat but still took a moment to make my daughters' day. A gracious and tireless warrior for science education indeed.
For all of you joining, the take home message is that we all keep living despite this monkey on our back and one upside is that the moments can be just a bit sweeter …
Back at 'ya Deanna. Glad you are busy.
Kathryn - So glad whatever it is you didn't want there wasn't there.I am grateful, above all, that I haven't had to learn anything about disorders involving spinal fluid.
Hildegunn - I am so glad you found us.We are very much alive an kicking here on the Bone Mets thread.The shock is something something you just walk through.Not here to tell you everything is okay, but at a certain point you do stop worrying so much and get on with living.That will happen when it happens.Right now sit with the shock panic and trauma as best you can … I hope you have support and people to talk to around you.We're for cyber hugs and support and some humor.Also for hope, which you can definitely include in the fog of emotions you feel.
Many MBC folks, particularly those with bone mets, do well and die of something else which is more or less our objective here on this forum. Yuk yuk. One of the side effects is a weird sense of humor, but it takes a bit of time to develop.
>Z<
Bill Nye the Exhausted Science Guy in the departure lounge in Lincoln Nebraska.
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Z- Totally Cool!! Bill Nye!! I'm jealous!! It was an amazing eclipse, up here in Bogus Basin, the temperature dropped like a rock, from blazing sun to cold night- the sky turned the weirdest yellow, as dusk got to competing with sunlight- towards the end, it was dark sky but for this white white spotlight on everyone's faces from what was left of the sun! No wonder the ancients went running to set off a bunch more sacrifices after a solar eclipse! No mistaking it for a normal day!!!
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Bill! Bill! Bill! I loved that show, awesome pic
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Z. Great picture. How exciting !!!!!!
Babs
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Hello wonderful ladies! My name is Joy and I have been lurking for a few weeks. Diagnosis is in and I have mets to spine and distal femur. I am currently going through additional testing to determine treatment plan. I see my new Rad Oncologist next week. I was happy to see she is a Harvard Med graduate and chairs the Radiation dept at U of M. (we cling to any positive info, don't we!) I have not been in freak out mode yet. I expected this diagnosis . My hubby on the other hand......
I am happy to see all the support here. I want to live to the fullest through all of this. I have tickets to 4 concerts coming up through the rest of the year and plan to go and have a great time. Seeing bands I love is my great passion and makes me feel totally alive. When it was thought that I might need immediate surgery, I told my husband and son that they would have to carry me on their backs to the U2 concert in Detroit labor day weekend. I was going no matter what. Luckily, no surgery at this time! I plan to spend a lot of time on this board because everyones experience teaches me a little more on how to handle my new reality. Love to all,
Joy
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Welcome Joy- and what a joy that you still get to go to your music events!!!!! You are now part of the best bunch of people- so helpful, knowledgeable and supportive.
Babs
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I have a question about pain. 5 months ago it was my constant companion. Now I have pain free weeks.! But this week I've had a bad time with pain. I felt good so I was a little more active. I also seem to be feeling the side effects of this month's faslodex shot more than in the past. Has everyone's pain improved over the months. Or is it more of a good day bad day experience
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hi, has anyone stopped chemo after four rounds? I have lost so much weight because I cannot eat more than a few bites a day. I have HER2positive mets to bones with Taxotere / herceptin and prejeta. I have a scan scheduled for Sept 1 at which time my MO would have determined if I needed more chemo. I have a 5 yo who sees me whittling away to nothing, for almost two weeks post chemo. I'm hungry but food taste horrible. I have other SE as well but I am scared I am starving to death. Any feedback from those who have used only hercepin and perjeta is welcome.
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Hilldegunn, Maire67, others who complimented me on sharing my thoughts....thank you, I'm really pleased to have been able to help. I feel quite chuffed about that, as it means my early experience, with all its pain, fatigue and just not knowing what would happen next has been useful. Actually, a lot of what happened during the first few months after my operation are a blur now. I just did whatever my BS and then my oncologist told me to do. Everything had to be written down because I was on so many drugs I could hardly remember my name! I'm still on lots of pain killers...I've tried weaning off them to see if I can manage on less but nuh uh, no way....not worth putting myself through it. Someone asked about pain, I think. I had bone pain in my back, ribs, neck and left hip for at the very least six months before diagnosis, so it's about a year and a half now and, while the pain has relented somewhat, there's no way I can carry out my normal life. I'm on a trial of Letrozole and Ibrance. This is my seventh cycle and, at every visit I hope I won't need to be taken in my wheel chair but walking the distance from car park to the lab for my blood test and from there to the Cancer Centre and then to the Outpatient pharmacy is just too much for my poor back. So, this is what I was saying, Hildegunn, about being patient with your body. The trick is to stop thinking about what you used to be able to do and congratulate yourself on any little things you CAN do and DO do. As someone in the thread said, this is our new reality. I liked that, just wish I could remember who said it but if I go back to check, I'll lose this post.
Joy and others new to this thread, a warm welcome. You'll find a lot of support here so share with us.
Love to all, I hope it's a good day for you xxx
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Hi JFV I can't speak for anyone else but for me, after a year and a half of bone pain and a diagnosis and treatment started ten months ago, the only time I'm pain free is when I'm propped up on cushions with my back completely supported and a heating pad against it. If I walk around, I have to go back and sit again after 30 minutes. I'm taking Targin twice a day (I'm in Australia, drug names might be different...Targin is Oxycodone and Naxolone), Tramadol 100mgm twice a day, Pregabalin twice a day. I'm trying to wean off Tramadol to at least taking it PRN but it's painful without it.
In answer to your question, for me pain is still my constant companion but the good day, bad day thing does happen. Some days the pain is slightly better than others, for no apparent reason.
Does that help at all?
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Thanks Joyneri, I'm just happy my words have been useful. YOUR words, as well as the others who have been complimentary, have given me a real lift to my spirits. The cancer experience has made me physically isolated so it's fantastic to be able to reach out to others in this way and, if anything I have to offer is helpful, I can go to bed at night satisfied that I can still make a difference for ladies in a similar situation.
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Hiya TarheelMichelle wow, you've had a tough time. Congratulations on a great attitude. Loss of mobility....hmm, yes it's a difficult one for sure. I used to be very physically active, lots of walking and exercise, zipping around moving freely and had great agility. Well, that's in the past. That's who I used to be. Now I'm someone who has to spend a great deal of time propped on cushions in as comfortable a position as possible so obviously my daily goal has to be different now, in this new reality. For me, to keep myself sane, I focus on what I can do instead of bemoaning what I can't do. What I can do is reach deep inside myself and find the resources to be in a happy place.....for my own sake and for the sake of my husband and son. I want them to live in a happy home and if I'm unhappy, we all are so it's up to me. Gratitude is a biggie...I list things mentally that I'm grateful for and I keep on reminding myself....my husband and son love me to bits,...... I've weeded out the friends who were fake (they gave up and left long ago) and now I know I can trust the friends who are staying the course with me.....being warm on a cold day, watching the rain on the window, cloud watching (it's winter in Australia), sipping a hot coffee or tea or hot chocolate, eating chocolate! now that's a good one, I can eat as much as I can handle without throwing up because I need to put on weight.....ummm reading a good book.....using Facebook to keep up with friends. I guess that's mainly what I do. This doesn't mean I don't have the occasional meltdown, I do and then I let myself cry floods of tears if I want to, or just "be with" whatever feeling is coming up. Being an optimist helps. I made a choice, too, some time ago...I can sit and think about possibilities and scare myself or I can be in a state that you could call denial but I call it "denial with knowledge lurking behind it", meaning I'm aware of the implications of my disease but I choose not to probe at it or dwell on it.
I hope you can wade through all of the above and I really hope this helps somewhat. Sending you a big hug.....a careful one!
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Ronda, your skin irritation sounds so awful! I don't take painkillers, but I've always had skin issues. I'm going to make some suggestions which you likely already know about, but just in case you don't... First, if it's caused by histamines, do you take an anti-histamine? Use as little soap as possible...like just the sweaty spots, and keep your water temperature on the tepid side. The soap you use should be mild, like Dove unscented. Personally, most moisturizers make things worse for me (perfumes, chemicals, etc.). I would try bare skin for a few days, then maybe some natural substitutes, testing in a spot to see if it increases the itch and irritation. I used to test things on my breastbone because it was thinner there and if I was going to get hives, they would show up quickly. Over the last year or so I've experimented with coconut oil (made me itchy), organic cocoa butter (hated the smell!) and organic shea butter (which I like). You just whip them with beaters, adding a little bit of a neutral oil like almond, and it turns into a nice light texture. I also experimented with making my own cold cream by using solid vegetable shortening whipped with a bit of almond oil, and my skin seems to like that so much, I don't need to use anything in addition. On my face I just rub it in, wipe it off, then go over with a cotton pad dampened with 50% ACV and water. No more moisturizer needed. I can also use it on the skin of my body without irritation. Plus it's about as cheap as you can get!
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Wemma, what if you drink your food? And chug it down. Like a smoothie of whey protein powder in as little almond milk as you can manage (to make it easier to drink down) plus some good oil, or some cream. Maybe some wild blueberries. A few times a day. And a scoop of Amazing Grass Greensuperfoods in there once a day. Do you think you could manage that?
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Ronda - Oh I feel for you having so much pain. I can share my experience with you although not sure it will help as I resort to opiates. I use long lasting hydromorph contin every 12 hours and increased the dosage every 48 hours until I found my level of comfort. I remember my nurse telling me to always take the hydromorph with 2 Tylenols extra strength (boosts the effect of opiates) and an OTC anti-inflammatory (I alternate between Naproxen every 12 hours or 600 mg Ibuprofen every 6 hours). And of course 2 - 3 mg Dilaudid for peaks of pain. I hope you can work with your team to find relief, pain gets us in dark places unnecessarily. Keep us posted.
Wemma - I also find it very hard to eat on chemo and have lost some weight. I'm on my fourth month of weekly Taxol and it seems as if taste buds are starting to behave a bit more. Food tasted so bad the first few months. Try to have at least small portions of protein a few times a day and eat whatever tastes good to you - whatever it is. Rinsing with salt and baking soda before eating seems to help taste buds a bit or drinking a few sips of club soda.
JFV - For me pain comes and goes but was pretty much constant the first 3 years after dx. I don't know what is going now but since I started Taxol I have no bone mets whatsoever! Don't know if it's related but sure am enjoying the break.
Rosiesgirl - A warm welcome to you! This is the place to find support, info and knowledge!
Babs - Have a great trip!
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Babs, I so happy for you. You just get on that plane and try to forget everything except holding a new baby!! I'm excited for you!!
Z I feel the same way. All the worry juggling pills, appointments to go away. I just told my MO that I was going to Africa for 18 days in November and he was so good and wrote the dates down and will make sure I have what I need. Glad you have had a good summer. Love the photo. Your kids must have been excited to see him!!
Welcome to all the new ladies on this site!! Stick with us. Today on this day last year I was diagnosed!! I thought at that time I would be dead, but here I am and so happy I have all of you for support. It kept me going through the most devastating time in my life!! Even though I've had progression to my liver, things seem to be calm now.
As far as pain, yes I think sometimes it's not only bone pain that comes and goes but inactivity can cause your muscles to hurt. I take Aleve if I feel that way and things seem to get better. It's hard to tell but I just ignore it and keep working until I'm tired.
Hope everyone has a good day. Hugs to everyone!!
Anita
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Welcome Joy! My husband and I are also huge music fans and we have attended many concerts, and quite a few since my diagnosis. One of the best nights of my life was last year at Citizens bank park in Philadelphia with my husband and 3 sons. We sat on a beautiful summer night and saw Paul McCartney with the Philadelphia skyline in the background. Tears ran down my face when he sang Maybe I'm Amazed which is a special song for me and my husband. Let it be also has some powerful words for me. We are seeing Billy Joel on September 6, have seen him several times a and always a great show.
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Anita, It's good for us to mark our anniversaries and look to the future. I could use some photo therapy please. Love the giraffes.
Yesterday was bittersweet for me. My son received his PhD but I was unable to make the trip. 4 months ago it was doable but not so much now. I was able to see his thesis presentation via live streaming and later face time with colleagues, professors friends, etc. 8 years ago when I found out I had mets, it was my goal to see him achieve this and I did. Lots of tears and smiles the past few days. So ladies, keep your eyes on the future, keep marking those anniversaries, and go go go while you can.
Lynwood, I saw Paul McCartney two years ago at a stadium and it was spectacular. One of my favorites is In My Life.
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Ah, Linda, I'm so sorry you weren't able to go in person.
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