Bone Mets Thread
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Booboo...Oh wow! Thank you so much! You've given me the confidence to continue. I read through my blog sometimes and I'm not sure whether it's of interest or not but I keep going in the hope that it is xx
Patty....so good to see your post. Sending hugs.
Iwrite and Patty ... so true. I can't travel but I don't need to. My friends are here.
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Leapfrog, I feel the same about this site. There are not a lot of Europeans here, but I found this group and it seems right for me. I was useless, I knew nothing, I have learned a lot from all you ladies, through the bone mets, the liver mets pages. At least I ask more questions now, don't accept so .easily. Though health systems are different all over the world. I don't know what it's like in Australia. Ps how's your flowers on the terrace? X
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Patty, haven't met you much, but glad to see you posting
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Sue,
Thank you for your honesty and for bringing up a very good point. I take a pretty low dose of opioids, and it's not getting any easier to ask for them given the current climate with opioid addiction. This makes me really mad because that's what these drugs were originally designed for....cancer patients. Ok, I know even we can get addicted, but what's the alternative? Living in pain, along with the other day to day issues we have to tackle, is not fair. We should be able to ask for help when we need it. I am glad you said something about the patch. I've never been offered that alternative, but I'm going to discuss it with my MO tomorrow. So thanks for your post
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it is very interesting to me!
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Dear mbc friends - my heart is heavy as I ride the roller coaster of emotions with this disease. My hip pain no better - hard to walk. My onc thinks I have either another tumor on my hip or my spinal tumor on my L4 and L5 vertebrae is pushing against my spinal cord and causing the pain to my hip. I've tried so hard not to take pain meds, but I couldn't make it otherwise. Back I go in the MRI tube tomorrow to see what's going on. Only my granddaughters hug this weekend is keeping me strong. I so want to give this all up and just let nature take its course. Running out of hope and i have hardly begun this journey. Sorry to vent, but need to talk to someone who understands
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Cloudnine: Radiation CAN AND WILL HELP! When I first diagnosed, I was in so much pain that I had to use a wheelchair. That was two years ago. A good radiation oncologist will get you back in shape in no time. Had rads to the thoracic spine, and it got rid of the pain.
I have extensive mets in my spine, illiac, muscles adjacent to spine, pelvic bones, hips, femurs, ribs, liver, pancreas, kidneys, abdominal wall and my lovely 20+ brain tumors.
I also had problems on my right side last year, had to use one of those scooters temporarily to get around. Had some more radiation to the lumbar spine, and it fixed it right up.
Please don't give up until you have a scan and get a treatment plan for the hip pain in place.
((Hugs to you...I CAN FEEL YOUR PAIN...totally been there))
L
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Cloudnine, I am sorry to hear you are having such a difficult time. I am sad to hear that you think you should try not to take pain meds. There is a reason why so many of us have been prescribed medication for pain. The reason is that we should not suffer from pain when there are ways to relieve it. Pain medication is a valuable tool. Don't feel that you are failing or giving in just because you want relief from pain because that is not the case. I am glad you are having anMRI to see what is going on. Sometimes pain increases as we begin treatment due to tumor flare. This could be your issue. It usually takes several months to see improvement from Ibrance and Femera. I know that it is hard to be patient. Depending on the results of your MRI, your MO might recommend radiation to relieve your pain. That is often recommended for painful bone mets, and many people here have seen good results. I will be thinking of you tomorrow as you have your MRI. How quickly will you get the results? Let us know what happens and how you are doing. I know how scary, confusing, and discouraging things can be, especially during the first several months after diagnosis. It really will get better.
Hugs and prayers from, Lynne
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CloudNine, gentle hugs. Fingers crossed that some of the pain is flare from the tumors getting their butts kicked.
I hope your team figures out a path forward to get rid of the pain soon - radiation seems to help a ton of the bone ladies.
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Hang in there, CloudNine. I hope that you can find and work with a pain specialist. As the other gals have said, there's no reason for you to be in pain. And "giving up" is not a description of the solution. Relief can be found through radiation, the right meds, and other "green" options. I shall keep you in my prayers during your scans and in these following days as you seek the relief that you (and all of us) so desperately need.
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Cloudnine - If your oncologist has not already referred you to a great radiation oncologist, find another onc. There is something wrong. What you have is treatable. You should be able to get an appointment with an radiation oncologist without going through your Oncologist, who I have written off at this point.
You live very close to the Mayo Clinic in Rochester. The radiation oncology group at Mayo Rochester is second to none. I flew there in January from New Mexico. I am not easily impressed. I was impressed. Call the Mayo radiation oncology department and ask for an appointment. They will take your insurance information and figure out coverage. My Mayo RO was great, but not unique. I would ask to see whoever can see you first. It's a great facility.
Let us know how you are doing. And please take some pain medicine. You won't need pain medicine once those mets are treated, so it's not a slippery slope to addiction but rather a bridge back to sanity.
>Z<
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Cloudnine, Z's right that pain management is a bridge back to sanity. Take whatever meds you need to get yourself through to rads. Then I'll bet you have a different perspective. Sending prayers up your way.
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Hello Cloudnine,
Please don't give up. One year ago I was in a lot of pain with two collapsed vertebras and widespread cancer pain in my ribs and pelvis bones. I could hardly walk, I was so weak I felt like a 100 years old lady, I needed constant help getting around to my appointments, showering and feeding. I thought I was dying and put my affairs in order.
Luckily I decided to switch hospitals, and in no time with a new MO, between the new TX, a khyphoblasty operation to repair the vertebras, followed by radiation therapy to deal with the pain, a fentanyl patch, a specially designed corset, and physical therapy I was up and running. Couple months later, I let go of all the help I had needed and I have been self reliant ever since. Recently I got off the patch because I feel no pain.
Don't give up! Things can change on a dime with this disease. I've learned so much by reading the stories of all these great ladies on this board. I'm certain you will feel better and do just fine. Like Z, Jaylea, Lita 57, Midwest Laura, piggy99, and 50sgirl have said, get yourself the right team, it will make all the difference in the world
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Cloud nine, I am starting a second round of radiotherapy next week, 15 months after last one. It helps. Be strong honey. We are with yo
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Cloud nine- The ladies here have experience and I agree with them. On top of the pain, that first few months is hard emotionally. If I was starting this whole thing over, I'd be more proactive to get help and put off "giving up" for at least six months to let things settle and then re evaluate! Lots of hope here! Call Mayo...they are awesome.
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Cloudnine, I don't come here as often these days, so am not totally up on your situation, but I do recognize similarities to what I went through when I was first dx'd. I had a lot of pain in my right leg -- was barely hobbling around on a cane for several weeks while I waited for an MRI that was scheduled at UCLA. In the meantime, my local onc (I live 3+ hrs. outside of L.A., so use a local onc as well as one at UCLA) had rolled his eyes and shook his head about my pain, leading me to believe it was a part of living with mets. Long story short, the pain became truly excruciating over the weekend before my Monday MRI, and I had to go to the local ER, where much to my shock, I learned I had both a fractured femur and fractured pelvis. Admitted to the hospital on the oncology floor, I had a night long pity party of tears and thinking it was surely the end. But I had a wonderful ortho surgeon who placed a rod in my femur and did a total hip replacement. The recovery wasn't a piece of cake at first, but within 3 mos. I was walking normally again, and soon after cleared for all previous activities.
I realize your situation may be different than mine, and you may not even need surgery. But I just wanted to share my experience to encourage you and other new Bone Mets thread participants, because I've been where you are, wanting to give up because of the pain and belief things were on a hopeless decline. Sometimes even the most caring of docs can lead us to feel hopeless with just a look or a few words that are not only detrimental to our condition but our spirit, and things can be much more hopeful and outcomes very different if we take the time and make the effort to get a second opinion, preferably from an NCI-designated cancer center where they specialize in patients like us.
I'm glad you're having another MRI.
Hugs to all, Deanna
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Thank you everyone for sharing your stories, wisdom, encouragement and most of all - hope. Have a late appointment and will go in soon for my MRI. I'll hang onto your words of love and let you know what happens. God bless this forum of beautiful ladies. Wish I could hug you all
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Hi Deanna, so good to see out here. How are you doing? I also just want to say how much I admire you for being there for the concerned folksposting on the MBC questions thread. They are lucky tohear from you.
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wonderful experience . Babs you are such a stunning woman
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Happy dance girls after a stressful 3 month wait Bone scans still stable no progression and CT scans showing organs all clear. Just went to Ed Sheran in Melb he was amazing (me on the left0 -
jesgotthis - as one who was supported by Deanna on the ‘concerned’ folks posting during my mets discovery in Feb, I also admire her immensely! Thank you again Deanna for providing some hope in my moment of despair. So grateful to you!
Lauren
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Delzy, WOOHOO for those scan results. I am dancing with you. Ed Sheran, eh? That must have been wonderful.
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Delvzy, YAY for those scans.
And jealous about Ed Sheran. I'm not usually one for live concerts (I'm like a granny when it comes to loud music), but he would be one I would love to see live.
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dlb823 - I was wondering what your doctors suggested and/or did to treat your fractured pelvis. My Mom has 2 fractures in her pelvis, so far no where else. Just finished 5 high dose radiation treatments and will have a follow-up in a few weeks. I don't know if we should ask the oncologist about other treatments or the radiation oncologist at the follow-up visit.
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Delzvy, wonderful news! I’m seeing Ed Sheran in May....love hearing you had a great time! I saw U2 last year, and the other person I want to see in concert is Ray LaMontagne
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cagirl, I actually had to go back and look at the MRI report from that ER visit, to figure out what happened, as I don't recall the pelvic fracture specifically being addressed. The femur fracture at the very head of the femur was "mildly displaced," so that was clearly the biggest concern. I don't have the surgical report, but I don't think anything was ever specifically done for the pelvic fractures (actually there were two, like your Mom), and I'm guessing they were less consequential and healed during the time the hip/femur surgery healed. I am also on Xgeva, which has been somewhat of a wonder drug for me, and I suspect that has helped. Is your Mom on a bone building drug? R/T was strongly recommended for me after my surgery, but I refused it, believing my ortho surgeon had done a stellar job of removing diseased bone, etc. So I can't comment on your Mom's tx, but trust the R/T will "heal" those fractures, or at least stop them from getting worse and help with any pain. But it does seem like a bone building drug would be wise, especially if she has other bone mets.
Good to see you, LaurenH, and, Hi, Jen! And for all the Ed Sheran fans, with over 92 million views, you no doubt have seen this, but it's so beautiful, I thought it might be a happy thing to share.
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Delvzy great news!!!
Bab
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Delvzy Yay!
>Z<
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Cloudnine....I'm a bit late on your post but I concur with the others. Please don't give up. I can understand how much pain clouds our judgement and can make life seem unbearable. I'll quote you a chat I had with my oncologist. Dr Mitra: so I believe your pain has been worse lately? Leapfrog: Yes, it has been a lot worse. Dr Mitra: have you been taking the new pain med I prescribed? Me: no, I feel that I'm taking a lot of pain meds and that I should be able to cope with the pain myself. Dr Mitra (said kindly, as an aside to my trial nurse): she thinks I give her pain meds for fun. Chat ends with me laughing ruefully! Dr Mitra also said, "You don't have to suffer, you know. This isn't a contest". Cloudnine, I'm telling you this because we have MBC. Not a slight headache or a normal ache or pain. We have cancer pain and cancer pain is bad pain and we deserve as much relief from it as possible. As for your condition, I would definitely take the advice of all of those above. They know what they're talking about. I don't have their experience. My only experience is pain from my extensive mets. Sending you a big hug.
Minnie.... my poor plants are suffering from the hot days we've been having. It's Autumn in Australia, which means the sun is slightly lower in the sky and is shining further into the balcony but our Autumns are still very warm so some of the plants are not very happy. And I've moved back home to be with the family as my last cycle of Ibrance was a tough one and I was very nauseated and couldn't manage on my own. I felt that i'd given my son a three month break from looking after me (he's been my carer for three years and during most of that time I was helpless) and he and my husband were missing me so I came home, having shown myself I can do it alone during the times that they have to be travelling for business. Next week they'll be away so I'll be back there and will give my plants lots of TLC. This cycle is completely different. I'm feeling very well, YAY!!
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Leapfrog, glad to hear you could go home for a while. It is hard juggling life, illness, careers. Those plants can be replaced with fresh ones as needed. Hope ou feel better soon. Spring here in Spain, so,time to get my little garden ready. Energy needed. Someone please send me some lol. X
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