Bone Mets Thread
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MaryK: I'm sorry you are dealing with all this at 29. I was diagnosed at 38, which I realize sounds old when you're 29.
I have extensive spinal (and pretty much every other bone) mets and had three compression fractures last summer at diagnosis. I couldn't walk, roll over in bed, get into the car. Not just because of the pain, which was debilitating, but my body just wouldn't do it. I had two kyphoplasties and started Xgeva. That was in August. By October I was taking my Girl Scout troop camping. This past weekend I hiked for six hours. I'm not 100% and I do have areas of weakness, but I'm living a really normal life. You can too. I'd recommend seeing an orthopedic surgeon so they can tell you if you are at any risk for fracture or if you need to modify any activities. My fractures were at L3/L4, so I try not to lift anything below my waist. Except my dog, because I can't resist!
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lita, Mary and blue! Im amazed at the strength you ladies have shown to get back to the normal life..thank you for sharing your stories. Hope i ll be there soon. I have another question for you..how did you manage breakthrough pain? I am having intense pain in my legs and hips. Cant do anything in day time and sleep is impossible..i am in depression now.please share your experiences about dealing with pain..i have no LIFE..crying
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blue that is one Cutest Photo making me think YES! There is a life after stage 4..thanks for sharing..
i requested my onco to prescribe me morphine but she is reluctant to do so..
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MaryK, what are you taking for pain now? Managing pain is SO important. We all have different ways of coping/relieving pain. Do you have a copy of Bestbird's document which has a wealth of info on stage IV and options on pain meds? My meds don't seem to be doing the job anymore and my nurse suggested I see a pain specialist. Could that be an option for you? No wonder you're depressed, you can't stay like that. I have long lasting hydromorph every 12 hours and dilaudid as breakthrough every 4 to 6 hours as required. Add to that an anti-inflammatory and Tylenols. A lot of gals find that 600 mg of Advil with Tylenols every 6 hours help quite a bit. Advocate for yourself and insist on having appropriate pain meds. It makes a world of difference in QOL.
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Mary have you thought at all about medical MJ it's great for depression, pain , appetite etc. As well as letting you get very good sleep without having to take several different kinds of harmful meds. No side effects either , I take the THC component at bed time I sleep like a five year old.
So I have a general question for you ladies. How long into your diagnosis did you experience fractures. I'm sick of waiting for the hammer to fall and I'm very active so I figure my time is coming. I have probably been running around with mets for about five years. Diagnosed for two of those but considering the progression at diagnosis it was longer.
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MaryK - There are lots of options for pain. A gentleman in my hospital cancer support group also has St IV (obviously, not BC, but a different type of cancer, which has also spread to his spine) and he uses Fetanyl patches that last about 3 days. He says they're pretty strong. You could also ask for 10 mg hydrocodone which is mixed w/Tylenol. You take a pill every 4-6 hrs. There is a good "Pain" thread in one of the other forums. You can get a lot of info there. The big hint is staying AHEAD of the pain.
Do you live in a "legal" state for medical cannabis? I find that medical MJ helps me a lot. THCa is good for sleeping and helps w/pain and inflammation. You want to get the THCa, which is a Precursor to THC; and THCa is better for breast cancer than straight THC...but if you are ER-, it might not make a difference. Straight THC, they say, can feed the estrogen receptors, if you're ER+.
Good luck, and keep us informed on how you're doing.
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Wendy, first you may not get fractures at all. Mine appeared about 2 years after dx.
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maryk
I do feel for you. Managing pain is so important. Hydrocodone has worked for me and so has pallative radiation. Sometimes they don't want to do chemo and radiation at the same time, but do you have a radiation oncologist to consult with. All the info at the beginning can be overwhelming. My cancer center has a cancer navigator that has been helpful to me.
I wish you peace
Mary
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Wendy - My compression fractures appeared right from the gate, but my Radiation Onc said I probably had my cancer for quite a while - well over a year and a half. My BC was not detected on the usual mammograms from last April 2015. RO said you don't just wake up with St IV in a matter of weeks, especially if it's HER2-, ER+.
As long as they put you on Zometa or Xgeva, it will help the bones resist fractures. Hope that helps.
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Wendy. I was dx with bone mets about 1 year before I fractured my lower rib bone by picking up a piece of paper at work. I've been lucky with no real symptoms from any of my ca sites but maybe that's because I chalk up a lot of the aches and stiffness to my age (67)!
Babs
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Just wanted to leave a note of inspiration with you all...I have been involved with the 4th angel mentoring program through Cleveland Clinic and because of my recent Stage 4 diagnosis they found a mentor for me with bone mets. We talked a LONG time on the phone...she has lived with bone mets for EIGHTEEN years !
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Silvia: I have had 4 Zometa infusions so far...had flu like symptoms the next day with the first dose ...aches with the 2nd dose and no side effects since.....hope you have an easy time with it ! I would also echo the above suggestions regarding fluids and taking ibuprofen
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Thanks Lynne and Stilits for the advice!!! I read everyone's comments and I'm inspired by you all. I have a lot of "WIM" (woe is me) days and coming here really helps my mood.
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MaryK, I'm so sorry you are having such pain. I have a little, but I feel I'm lucky it's not worse. I'm really new to all of this too, was just diagnosed about four weeks ago and had a bone biopsy this past week to confirm. I'm starting Femera tomorrow and my insurance just ok'd Xgeva shots. I have no idea about anything with Xgeva, so I'm going to have to look around and get some info on it. I do know I have dental work that needs to be done and they won't give me a shot until six weeks after I get any dental work done. Anyone else here taking Xgeva that can give me any info or se's on that?
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Good morning ladies,
I've had two incidents of progression, one a year ago with large(ish) spots on my pelvis and spine and after rads and a switch to Ibrance, additional recent progression, two 9mm areas on different pelvis and same spine T2.
Question is at what time might we explore a biopsy of the properties of theses new progressions? I'm of the belief my BC has mutated to something other than ER PR positive. It's just a feeling I have and being a problem-solver my whole life, I want an answer to what's going on. I will go back and reiterate I'm happy my cancer remains in bone only, but I'd like to know more about it.
Does anyone have experience with similar progression OR thoughts I haven't thought of?
As always, thank you for your kindness and comradery.
Amy
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I haven't posted lately, but have been reading although it's hard to keep up with this fast moving thread. Stilts, that is inspiring news about the 18 years! Chelle congratulations on the new grandson. I hope to get there someday. At my age I should be there, but having my only child at 40 puts me way behind with a senior in H.S.
I echo what the others have said about Zometa with hydration being key. I only get it once every 3 months, but my nurse says it's hard on the kidneys and she always gives me fluids afterwards even though I'm hydrating. I have done well with it and have never had any SEs.
Hugs to you all. Cheers, Barbara
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Deanna, I haven't seen any posts from you lately. I hope you are just busy enjoying life.
Patty, How are you doing?
Valerie, I hope you are enjoying your summer.
Carol, You have been quiet, too. You okay
Lynne
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MaryK, have you seen an orthopedic doctor or neurosurgeon?
My wife has extensive mets up and down her spine, along with a serious compression fracture in her T2. She has to wear a combo C-collar/back brace at all times that she is not sitting/sleeping in her recliner. She has pain associated with it, but for the most part it is manageable. She recently had 10 rads to the C1 thru T3. We are praying that she will be a candidate for fusion surgery at some point.
But, back to your intense pain in your hips and legs. I am currently experiencing some Sciatica due to some disc issues with my L5 and/or S1. I am having severe shooting pain in my low back, left hip and all the way down my left leg. Gabapentin and Muscle Relaxers help tremendously. It is possible that you are experiencing the same thing, and it is very treatable. I am praying that you can get some quick relief.
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Lynne,we just got back from a few days in Sedona. Very sweet of you to notice my absence. Looks like I have a lot of reading to do! Will try to step back in w/ intelligent comments as soon as I am up to speed. On the meantime, welcome to the new posters! Hate to see anyone new to this, but glad you've found us.
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MaryK - you've been in my thoughts. I try to do everything myself but I recently made a couple of mistakes managing something as simple as an infected tooth because the pain interfered with my ability to think clearly and advocate for myself.
I've noted from your posts that you are strong and competent. You will resolve the underlying cancer once you have full use of your faculties. But I am VERY concerned about the pain interfering with your ability to advocate for yourself.
You've received great suggestions to follow up on in this thread but it's very tricky to figure out which one is right for you, which one to try first. Do you have it together enough to follow up and figure this pain thing out? Do you have someone in your life to advocate for you? If you have someone, be very direct with them that you need help getting to a resolution of the pain. If not you should be able to find someone through your oncologists office or your general practitioner. Be very direct with them that you need help with the pain.
Pain is most dangerous in the way it effects the mind.
Sending healing vibes, but you need something a lot stronger.
>Z<
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Mary K, I came across your post today and thought I would chime in. I had a collapse in one of my vertebrae last December....that's actually when and how they found my cancer had metasticized. Since then I've had a kyphoplasty and four new compression fractures in my spine, brought on by lifting or some other physical activity. I have really been trying to be more careful to baby my back and I use hydro codone or aleve for pain management. With that said, my compression fractures have been healing up and as they have, the pain is getting better too. I think zometa has finally kicked in and hopefully that will help to preventfuture fractures as well. You can certainly do well with spine mets!
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Trying to catch up...
Linda, love the quote you shared a couple of pages back -- about not dress rehearsing bad outcomes! It's a great reminder!
Fran, I'm hoping further testing will show that whatever was seen isn't mets! Keep us posted.
Oh, MaryK, what an upsetting thing to have read! While I'm sure it has happened to some, it certainly would be a severe situation, and as others have said, is not common. I have diffuse and extensive mets, including very deteriorated vertebrae, and am still very active. I am one of those who ended up with pathological fractures 3 mos. after I was re-dx'd with mbc (they were there all the time, I just didn't realize it) -- and after surgery to fix them, healing time and some P/T, I was cleared to do absolutely anything, including running and skiing. OTOH, dealing with an mbc dx at your age is almost beyond comprehension to me. It's just not fair.
Heather, I've been getting Faslodex shots for a year now, and only once did I get a "bad" (painful) one. In that instance, I don't think the vial was evenly warmed because the tech had released the air bubble before she started warming them. And who told you that you would be sore for several days? If it was the person giving the shots or anyone in your onc's office, that's a HUGE red flag for me, clearly suggesting they don't know what they're doing. There's info' pinned to the top of the Faslodex Girls thread that tells the proper way to administer and receive these intramuscular shots. It's really important that we speak up and advocate for having it done correctly! Let us know after you look at that list if that's how it was done for you. And Wendy, I get mine high on the side -- not in back, so I don't think that's particularly a "US" thing. It may also vary I'm thinking depending upon how much tush we have, but smack in the rear does risk hitting the sciatic nerve.
Love the photo, Rachel! Your kids are so adorable, and you look wonderful!
I'll write more when I can catch up more...
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Hey Deanna, welcome home -I saw your Sedona photos...such a peaceful and soulful place...too bad you had to come home
Amy
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Thanks, Amy. It was an invigorating 48 yesterday a.m. in Sedona. 103 here now. Ugh.
By the way, I had an amazing Reiki session while I was there. Great way to tap into healing vibes and activate the healing process. I highly recommend it!
As far as your question above, I think following our gut instincts is always a good idea, as also touched on in Radical Remission. What my UCLA onc once told me in response to a question about mixed scan results is... if I am ever in a situation where a drug regimen is helping in some areas but not all, a biopsy would probably be her next step to figure out if the areas that aren't responding have mutated.
Regarding questions/comments above about pain... Since my mbc dx, I quickly realized that we don't all respond the same way to pain meds. A med that works great for some, may not work at all for others, and vice versa. It isn't always a matter of strength. When I was first re-dx'd, I had a palliative care doc RX several things that worked okay when I've never done well with pain meds, either suffering severe nausea or feeling like I've been sent into orbit. But when I was hospitalized for surgery, a hospitalist RX'd something that has been my go-to pain med since then. Now, in recent months, I've read several articles about pain meds and DNA. Evidently, there's at least one readily available test to ascertain what kind of pain med metabolizer you are. http://www.questdiagnostics.com/home/physicians/te... And it sounds like there may be more sophisticated tests available for those who require additional fine tuning. Maybe just something to ask your onc about if you haven't yet found pain meds that work well for you.
Z ~ Hope the tooth extraction heals quickly!
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Deanna,
We're the fractures you mentioned in your spine? How were those surgically fixed?
Thanks.
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Day two of Femera....praying it does its job. I have an appt. with my dentist on Tuesday to see what all needs to be done before I start Xgeva. I couldn't find a thread on Xgeva. Can anyone direct me to one?
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Kaption, I had pathological fractures in my femur and pelvis in 2014. I didn't realize I even had them (mistakenly believed my leg pain was par for mets) until I ended up in the ER in truly excruciating pain. I needed a rod in my femur and a hip replacement. It sounds like a big deal, and it probably was at the time, but thankfully I had a brilliant ortho surgeon, and you'd never know I went through that. Now my most recent scan mentions loss of height consistent with pathological fractures in T8 & T9. The possible benefit of or need for vertebroplasty or kyphoplasty is on my list of questions for my UCLA onc when I see her in October.
Gracie, I could be wrong, but I don't think there is a separate thread for Xgeva. What questions do you have? I was someone who really dragged my heels about starting it due to dental issues I hoped would resolve w/out extractions (they didn't), but after being on it 6 mos. I am thrilled with how well my bones are doing, and no issues other than the one time I tried getting the injection in my tummy vs. the back of my arm. That gave me aching for a few days, when the arm injection doesn't. Just a heads up... many dentists, including my own excellent one, are not familiar with Xgeva, nor do they grasp the urgency of our situations. I finally ended up going to a specialist at UCLA who truly understood both the risk and the urgency and pulled the tooth that I and my dentist had been dragging our heels about saving. The bottom line is, you can't risk needing dental work that impacts the bone once you're on Xgeva due to an increased risk of ONJ. So get anything questionable taken care of and a deep cleaning done before you start the med.
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I need help. I was diagnosed with Stage IV metastatic disease in my spine in March 2015. I have been on multiple treatments since that time. My CA 27,29 rose continuously. Approximately three months ago, my doctor put me on Ibrance. It has been such a blessing! For the first time ever, my cancer marker dropped. I'm stronger that I was. Now the problem. My insurance changed. Got a call from the pharmacy yesterday. My Ibrance is going to cost me $2550+/month. I don't know what to do!
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Rhollo, go to www.Ibrance.com and scroll down for Pfizer's CoPayOne plan. or call 1-855-612-1951. Someone can assist you and help determine if you are eligible for Pfizer's assistance plan. Also, there most likely are staff at your MO's office who will also look into this for you as well. Good Luck and I believe that you will find financial help.
Linda
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Rhollo,
You can also contact Patience Assistance Network Foundation. They could help. My medical set up the link with them for me.
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