Bone Mets Thread
Comments
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Myra, congrats on the Ibrance, I'm on it too!
Syrmom, I have extensive spinal Mets and the pain is definitely an issue. It flares sometimes and spasms are a problem too, are you taking a bisphosphonate? I find that sometimes I get the spasms after my Xgeva shot. This last month, the pain was intense and lasted about 12 days. Keeping your calcium levels up will help alleviate this. I was due for another xgeva injection this week, but passed on it because my calcium was below 9. I'm working on getting it back up before taking another shot.
For the ongoing pain, I had radiation about a year ago. It helped, but we aren't doing more because there are just too many areas now. I have been taking Norco every 6 hrs around the clock, Celebrex every 12 hrs for the inflammation, and I use Dilaudid for breakthrough. I am going to try Oxycodone this next week to see if I can stop the pain roller coaster a bit. The ups and downs every 4-6 hrs are starting to get to me and I'm looking for something longer acting.
It's really important to get on a pain management schedule and stay ahead of it. Taking meds only when it gets awful has you chasing the pain continuously. It takes me days to feel better when I go without a dose. It took me a long time to heed this advice, but it was one of the best things I finally did to improve my QOL.
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it's true ... It's finally true. I am going home today for sure. Whoot whoot
Monetary Cost of hospital stay for like 18 days = outrageous
Cost to my body = complete exhaustion
Paperwork signed to go home = Priceless
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Myra - I'm going to Varadero, Cuba on 22 March for 2 weeks. Can't wait.I echo Romansma's comment on biphosphonates. Back pain definitely an issue after treatment.
Linda
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yippee patty pepper
Romansma, staying ahead is paramount when it comes to pain. Friend is a pain management doc and drilled that into me. How are you doing on Ibrance
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Patty, thrilled that you are going home. Wow, that was a grueling marathon for you. Enjoy your weekend!
Myra, I'm doing pretty good on Ibrance, so far. Counts have started declining, but not bad yet. Hot flashes have increased, but I see that as a good sign that Femara is doing its job. Fatigue is increasing and I'm having vivid dreams/nightmares. I saw that the dreams can be a SE of the Femara. I started a thread called Ibrance 2015 for anyone taking this new drug to share SEs and hopefully good stories
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I'm thinking of you all and hoping for great results with your latest treatments.
Patty and Carla, I hope this down period gets over with soon. People without cancer have no idea what some of us go through with this disease.
I do want to share something a bit inspirational that happened yesterday at my onc's office. I met a woman who has been living with BC spinal mets for 23 years. She is now 79 years old, and looks and sounds strong. But 23 years! I was pretty amazed. Of course, she's had a boatload of treatments through the years, and she is currently undergoing radiation to some new areas in her spine and also taking Xeloda, which has given her a painful rash, but her spirits are high and she's very active. We spent awhile talking about her issues, and also talked about gardening, comparing notes on what fertilizers work best in SoCal roses.
Love and hope to all of my bone mets sisters.
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WooHoo to going home, Patty!!! And cute post. You must be so happy, and I'm sure your boys are thrilled! And prayers you don't have to make a sudden turnaround, as you did the last time. Hopefully that nasty, nasty bug is finally in retreat!
Good luck house hunting, Terre! Love the idea of the beach one! And how funny that you name your plants. We have a friend who names his cars, which always gave me a laugh, especially since they're vintage clunkers with tons of personality to match their names.
SyrMom, with the exception of my fractured femur & pelvis, I've always described my bone mets pain as aching or burning, with things like heat and pressure helping some. The fractures (which I didn't know were fractures until the pain got so bad I went to the ER) were off-the-chart screaming painful at that point, but even then the pain wasn't exactly where the fractures were. This new back pain I still have today is entirely different. It's more like sudden spasms that are so strong I can't stop myself from yelling out when they hit. I finally took a pain med (Acetomeniphen+Codeine 3) this a.m. It's taken the edge off some, but I'm still in no shape to do anything, and totally mystified about how fast this came on and how debilitating it is. I'm going to try the Dead Sea Salts bath and just hope I can get out of the tub if I get in it.
Sandilee, I LOVE the survivor story! Wow, 23 years! Thank you for telling us about her. Did she mention doing any alternative or complimentary things? And just out of curiosity, what rose fertilizer did the two of you think is the best (since I'm also in So.Cal)?
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Patty - WHOOO HOOOOOOO!!!!! So happy you're getting to go home. Priceless indeed!
Sandilee - thanks for sharing the great survivor story!
Deanna, SyrMom, and those dealing with back pain...sending you good thoughts. HATE back pain. My spine mets ached and I had some spasms before radiation, but just a dull ache now, so I'm not much help.
Romansma - the Femara does give one some amazing dreams.
The other night, I dreamed that one of the people here on the discussion boards (who I felt really close to) had changed her screen name and it turned out that once she changed her screen name, I realised she was someone I knew in real life and hated. And I was so mad! Bizarre on many levels - one being that there's really no one I hate. And it wasn't any of the screen names here. The dreams almost make sense, but are a bit twisted. The hot flashes I have from Femara have lessened with time, but what I do notice is that once I get warm (because it's hot in the house, for example), it kind of cascades and I start hot flashing on top of it and pouring sweat. Luckily, I work in a small office and they all know about my issue, so they're used to me fanning myself. It is a bonus in wintertime, but kind of sucks in the summer time. Anyway, good luck to you and Myra on the Ibrance. I am so hopeful for you and for all of us!Linda - I can't wait to see your pictures from Cuba!
Hugs to all,
Terre
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Wow what one learns from reading these boards...I have had just 3 days of femora and ibrance....Last night I had a true nightmare...So much so that my DH came and gently shook me...It was truly unsettling...I had not heard that side effect until I read this chain of tips..Thanks to all for helping me to understand. I am so grateful to be allowed to have this amazing drug combination that I will continue but at least I have some understanding...Blessings to all. Carolyn from Music City
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I'm so sorry to hear you are sick Dee. A week is a long time to be so sick. I can imagine that worrying about breaking a rib would make the cough even worse. I think I would wander around with a pillow all the time. Doctors recommend holding a pillow to your abdomen when you have to cough or sneeze for various ailments.
What a cool thing to come to work to, Terre. It's a great picture too. How far into Autumn are you? Any coloring of the leaves? OMG, I just saw your picture. It looks like a painting, not a photograph, not a real place. Oh, it is beautiful! I agree that we easily take things for granted. I used to love Fell's Point. It was a really cool place to go. Then I moved a couple miles from it. I think I went half a dozen times in the 10 years I lived there. I took it for granted. We have about a foot of snow. It was a scary drive home from rads Thursday. It's going to be much warmer this week, so soon we should have lots of mud. A guy on the gardening show my mom listens to told people they should start work on their gardens next week. LOL First, there is way too much snow out back where our garden is. Second, if it should actually all melt, what can you do in all that mud? Mud wrestling?
Patty, it's great that your scans show shrinkage of that nasty cancer. It almost makes going through all you have been going through worth it. It certainly is something to celebrate. Isn't Terre funny? LOL I hope you don't have to be conscious to swallow that camera thingy. When are they going to do it? Radioactive hospital scrambled eggs? How incredibly gross! I'm hoping for an easy peasy fix for you too. Without side effects. Hurray to being released from the hospital!!!!Congratulations to you Linda! That is good news, indeed.
Annie, good luck with infusion #7. I hope they can change your infusions to every-other-month treatments. I understand your worry about keeping your veins happy and healthy. I share that worry. Let us know how it goes.
Wow Carla! I don't even know what to say. I am so sorry you are going through all this. I take it that you will be responsible for massaging your bowels down, out of the hernia. Do you do this as a daily exercise or is it "as needed"? While it is a very serious situation, it is a good example of how we each hold our lives in our own hands. If I don't stay away from the sweets and get back to liking vegetables, I'm going to pay for it with my health. If I don't get to doing the weight-bearing exercises I should be doing, I'm going to pay for it with osteoporosis. So you keep up your massaging and send your body some love while you are at it. OK?
We look forward to you sharing your experience with Ibrance, Myra, and I pray for good blood counts for you. Indeed, I pray for all of us. I pray for the strength to bear whatever we must bear.
I've had 4 radiation treatments. The most difficult thing about them was the drive from the hospital Thursday. (Snow) I saw my onc. I STILL don't feel a connection with her. I did get to ask my questions, though. But it was weird. I was standing in the middle of the room, on my way to the examination table. She had seen my phone and was alarmed that it was on. Maybe she thought I was recording it. I showed her that it had my questions that I wanted to ask her. So that's how I was able to ask the questions, but like I said, it was weird. All the answers were basically "it's the cancer" or "it's just how it is." And I was asking them in a hurry, because I felt like I was inconveniencing her. Yet this woman my mother knows goes to her and thinks she's the cat's meow. She even gave the impression that she thinks the onc is nurturing toward her. Oy! That's not my experience, but I will just back down and let her do her thing.
I'm doing better. No recent severe pain incidents lately. No need to walk with the cane lately. I sure hope I'm not jinxing myself by saying that. I worked Monday morning. It wasn't too bad. Hopefully I will work Monday and Wednesday this week, after treatments. I don't want to give up the job, but something inside me tells me I really should. It's probably just my lazy voice.SyrMom, I'm trying to understand the pain issue too. I don't know what makes it come on or what makes it go away. Pain
meds and reclining help a little. I don't know if my pain is spasm pain. It just seems to radiate out from my spine
throughout all my back, my ribs, and my femurs. Romansma, I had my xgeva shot Thursday. I will pay attention to see if
that pain comes back the next few days.
Thanks for that inspirational story Sandilee. 23 years. That's awesome!0 -
Left to Right....My oldest Grandson Rylin Jay...Daddy...Brody James..(My Daughter) Mommy...Myself (Carla) Da! LOL
It was my grandson's First B-Day today...I was well enought to attend...Thank God
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Great news and wonderful photo, Carla! So glad you're feeling better! Happy birthday to your grandson!
Wonderful to hear from you, Dune! Glad you're doing ok.
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Once again, I have been lurking on this thread, but glad I popped in tonight.... just in time to see the picture, Carla! Love it! You look great! Happy Birthday to your Grandson.
Happy house hunting to KiwiCat. I love the plant story...that is priceless. Maybe if I name my indoor house plants I could keep them alive? I'll try it.
Romansma - I've mentioned this before on this board and I feel like a heavy duty narcotics pusher, but my oncologist put me on methodone for my back pain two years ago and literally OVERNIGHT it made all the difference in the world. I was on several different things...none of which were making that much of a difference, and within 24 hours I was pain free. I take a very, very low dose one a day and rarely have pain. I have considered trying to wean myself off it but somehow that never happens. Anyway - it might be worth asking your onc about.
Love the survivor story... how hopeful! Thank you for sharing.
Unfortunately, I found out this last week that my dad has Stage 3 or 4 cancer...skin cancer that has spread to the bones of his skull.
I'm headed home to California tomorrow to be with him and help my mom.... I figure if anyone in my family is equipped to help with bony metastasis it's me. Hugs until next time, which might be a while....
XO
Andi
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dlb- My survivor acquaintance didn't mention any alternative treatments- just that she has been treated by my oncologist the entire time and "does whatever he says," which probably means she takes a few proven supplements. I will say my onc gained a few points with me after our conversation.
And the rose fertilizer? She recommends Miracle Grow regular flower formula. The green granules that you use on everything else rather than special rose food. I've been using a rose food from my nursery, but I may try out plain old Miracle Grow and see if I get better results. She seems to have a "gift." :-)
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Andi - so sorry to hear about your dad. Thoughts and prayers with you. We'll be thinking of you.
dlb - I grew amazing roses in the US. Blood and bone was my go-to fertiliser. And I know this sounds nuts, but someone told me this and it worked. Find some iron (not steel) nails. Bigger is better. Stick them in the soil around the root zone. If you're planting new, a generous handfull of blood and bone and 3 or 4 iron nails into the bottom of the hole, then about 1/2 of soil, then plop in the plant. I was told this by someone who grew amazing roses and it worked. The nails rust and provide a continuous dose of iron. And then I used Miracle Grow during the year, and the blood and bone thing (sprinkled around the topsoil and worked in a bit) in the spring before they bloom.
Romansma and the rest with back pain - my MO said methadone was the next step for me. He said they can do a low enough dose so you're not ga-ga, etc, and that they've had great luck with it for bone mets pain. So I concur with Andi - worth asking the question.
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I usually lurk here but fish emulsion- stinky as it is, does wonders for making plants healthy and vigorous.. a little epsom salts diluted and the ashes from wood stove for those acid loving plants.
Great photo Freebird -glad you are well enough to join in the fun with your Grandson.
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Love the photo, Carla! You look great! So glad you were feeling well enough to enjoy the day with your family.
Thanks for the rose fertlizer tips Sandilee & Terre. I need all the gardening advice I can get!
Andi, I'm so sorry about your Dad. Isn't there a new, breakthrough drug for melanoma? Not sure if it's for Stage 4, but I think it is -- something very recent. Let me find that research and I'll post a link. I remember the increased survival stats were phenomenal.
Okay... here it is... looks like it was fast-tracked for FDA approval because results were so outstanding. http://www.mskcc.org/blog/msk-plays-critical-role-...
Dune, I cringed when I read the comments from your onc. My local onc told me the exact same thing, "It's the cancer," and "It's just how it is," (as if nothing could be done) when I was hobbling around with a cane, complaining of increasing leg pain. As it turned out, it wasn't just how it is -- I had was an un-dx'd fractured femur and pelvis that desperately needed surgery. But until then, I found that kind of attitude and answers not at all helpful and totally depressing. I'm so sorry you're getting them too. But I'm glad you have 4 rads txs down, and I hope the weather warms up a bit for you this coming week.
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Andi, good luck to you and your dad.
Thanks dlb for expressing your empathy regarding being dissed by your onc. I'm grateful for all of you sharing your experience.
Did I mention that yesterday was 3 years for me? I wrote it somewhere but I'm not sure if I shared it here.
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Congrats on your 3-year cancerversary, dunesleeper. May you have 30 more!
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hope everyone is well. I haven't been on BCO for more than a month. I'm finding it hard to find time to keep up on her and social media. It seems I only sleep and work. I'm 20 pages back, so I will just hope everyone is pain and progression free
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Welcome back ReadingMama! I hear you with the sleep and work. Hope you're doing well overall!
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While researching local cardiologists for a friend today, I came across a USNews article I thought might be worth sharing here, since rushed onc appts are something that occasionally come up as a frustration...
http://health.usnews.com/health-news/patient-advic...
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Thank you dlb. I hope our difficult communication does not result in any adverse health outcomes for me. I think I need to be prepared, but otherwise just make lots of use of the nurse coordinator and try to chill out.
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Dune - I gather your Onc did not change your treatment?KWC - how was house hunting?
Linda
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Interesting article on communication. I feel the time crunch every time I meet with my MO. I have made a habit of emailing her with information I want or need to discuss a week or so ahead of time. That way, she is prepared to answer my questions and has time to research anything I am asking. I also let her know about SEs, pain, etc. so she can quickly address it. It seems to be working and she tells me she likes that I communicate this way.
I'm sitting here, sweating, wondering what my intense dream will be tonight. They haven't all been bad, but definitely vivid! I will switch to Oxycodone tomorrow and see if it manages the roller coaster pain a little better than Norco. I had never heard of using methadone. Interesting. I only filled 2 weeks of Oxy, in case I don't like it, we will try something else. I just need more consistent relief. Too many ups and downs right now.
Sweet dreams, my friends
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Terre,
I'm doing well. My onc team still has not figured out what treatments I'll get on since I went off Affinitor. I'm still taking Aromasin until they figure it out. I was supposed to start a trial at UCSF with immunetherapy, tamoxafin & faslodex, but they have not gotten it started yet. I see my onc on Tues so may just ask him to make a recommendation as I would pefer to go to him--he's great & 2 minutes away. They thought I had liver mets which have turned out to be a hemangioma in the liver (thick blood vessels). My scans still state liver metastasis. Hope to be on a new therapy soon.
Terri
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I originally posted this on the Arimidex thread, I'm also posting here at the suggestion of dunesleeper:
Haven't been on the sight for quite some time. I've been on Anastrozole since diagnosis, 12/1/13. My body's initial reaction was great. 8 cm tumor in left breast shrunk to 1cm. Pet scan in July 2014 showed no active cancer in my spine, sternum or breast. Pet scan December 2014 showed a new bone met L4. Hot flashes were bad at first, they've subsided somewhat. Bone pain increased, I don't know if it's from Anastrozole, Xgeva or mets. Also, any sight that previously had arthritis is quite painful. (Cervical spine C3-4, Lumbar spine L4-5 L4 now has a tumor, right knee). Is swelling and pain in previous osteoarthritis sights a se of anastrozole or should I be asking these questions on the this bone mets thread? I went to see a friend in Florida for a few days. I'd been experiencing swelling in right knee. By the time the plane landed, I could barely move my leg. By Saturday, I was in the ER to make certain it wasn't a blood clot. Turns out I have a Baker's Cyst and Knee Effusion (fluid and swelling). I went to ortho today, Monday 3/9 he says in addition to a bakers cyst and the swelling, I appear to have a meniscus tear, how I got this, no clue, had one years ago and it was corrected arthroscopocally. Ortho tells me a second occurance is unusual. Heck, my whole life is unusual lately. He has pancreatic cancer, so he somewhat understands my hesitancy to have yes another test (MRI) or surgery. Said pain might subside on it's own if I rest it for 3-6 months? Anyone had anything similar? Do previous osteo arthritis sights give you more pain since bone mets? I se my MO at the end of the month. Anything I should ask him specifically? Thanks as always for the help ladies.
Sharon
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hey ladies. Can't remember if I posted I came home sat but was so very sick sat and sun. Could barely stand by myself. Complete exhaustion and weak. Slept most 90% of the time. I woke up this morning feeling much stronger. Still weak to walk but been sitting upright all day. Got to cuddle with they boys for 30 min before time to get ready for school ( so sweet) was awake and chatty the wholr time until time to get on bus. Even stated upright and chatty while dh gets ready for work. So on the upswing !
Dlb & dune - I think it's sad your mo's are like that. They should def to our cheer leaders with a good measure of truth. I loved mine who retired a couple months ago. He had been mine since Odx '02. He actually cried real tears when he told us of mets. Had cried with me several times since while u was having a breakdown. Once he said I think when a mo hands a patient a Kleenex they see that to mean quit crying , but not, they just don't know what else to say. Are you stuck with your mo for travel reasons ?
Romansma - what a great idea to email are requested info do they be prepared.
Hello and hugs to all. Will hope to respond to all next time.
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Sharon,
I hope your knee heals soon. I had lots of arthritis in my knees early on with Femera. Femera lasted me 4 years. I don't have any pain anymore in the knees with Aromasin. I went to an orthopedic surgeon who told me I had early arthritis in the knees & he gave me a shot & physical therapy. It worked well.
Terri
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sharin I also hope you knee heals soon
Terri. What an encouragement. You were in femara a year? Sweet. I've been on it since mdx 6-13. It's been working thank god and has been easy on me. However the back pain has been crazy. Lots of compressed fractors in spine after doing abs nothing.
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