Bone Mets Thread
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I just finished page 321 and wanted to say that I agree with Chelle's assessment of Dee's gardening skills. You do, indeed, create beautiful space.
Woo Hoo! I'm caught up! Now I just have to KEEP up. Hey Terre. Is Spring moving in? I see some ladies are looking forward to Winter. If I was rich I would become a snow bird: Maryland (actually Delaware would be a better choice) in the Summer and Florida in the Winter. I will do my best to make the best of it anyway. If we get snow I will try to build a snowman. I challenge everyone to show off their snow men.
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Patty, How are you doing? Back pain any better?
Hi Dune, are you feeling better off drugs for a while? How soon again before you go back on?
Have a killer migraine and nausea today from Faslodex shots yesterday. Anyone want my migraine? I'm selling cheap. No Afinitor for me, but possibly a new three armed trial that involves Ibrance and Exemestane. Don't have info on it yet.
On November 18th 5:30-7:30 CST, there is a web cast from Living Beyond Breast Cancer entitled, Conversations and Questions about Treatment and Quality of life for metastatic breast cancer. www.lbbc.org/mbc Thought I'd pass that along.
How's everyone doing today?
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I did not have any success with Affinitor & Aromasin. I did get high blood pressure, bumps all over my body & terrible mouth sores that were difficult to get rid of. Sorry for the bad news. Hope it works for many.
Terri
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Hi all,
Lindalou - migraines - YUCK! I'll pass on your offer... Aren't they the pits? Thanks for the link.
Dune - I wish I could be one of those snowbirds. Love the change of seasons but winter is just soooo long up here.
Will be seeing my rad Onc next Tuesday to have rads on femur. Intermittent pain flares there. Onc upped my pain meds on Monday and we hope to be able to lower the dose after the rads. Can't wait. I wonder if any of you who had femoral rod insertion and post-op rads, have another round of rads for pain relief?
Wishing you all a good day. Indian summer here, it's beautiful.
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Dune, I happily accept the challenge! I love the snow! We are expecting our first measurable snow of the season tonight. But only an inch in Denver. Slopes have been getting feet at a time the last couple of weeks. Time to put on a pot of green chili, for smothered burritos! Christina, I think that your tm's sound pretty darn good! Have you gotten your car back? Hoping it wasn't expensive. Why does stuff like that always happen right before the holidays? Linda Lou, I hate migraines! I very rarely get them. But oh boy are they miserable! Feel better soon! Deanna, what is considered normal for the ca27-29? I'm still trying to learn. I love all,of you wonderful ladies! You are a guiding light for me. Thank you so much
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I go to RO tomorrow for my consultation and I am praying they can start rads asap. I don't dare move or bend my left hip area in shape way or form. I can walk with a cane if I slide my leg on the hardwood floor and keep it really stiff. I am on a patch plus ketorolac every 4 hours. ( cannot do percocet etc) I am worried I did damage today by walking more than I should have walked. I am in such a bad place right now and I don't know who to tell it too. Pain was tolerable until I bent over? I am back in bed flat on my back. MO thinks inflammation is playing a big role where the met is.
I also had the xgeva shot today. It was given in my arm and there was just a tad bit sting, I didn't even tense up, it was a walk in the park compared to how I feel right now.0 -
Dear LovesMaltese, I've just read of your intolerable pain and feel for you. Let's hope and pray tomorrow at your doctor's office will provide help. Do you have someone to take you there tomorrow? You do have many who are here for you, and hopefully there will be suggestions for some relief. Thank goodness the Xgeva shot went well. x, Val
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LovesMaltes,
I don't usually post on this fast moving thread - don't have the energy to try to keep up with it, but I do check in at times and find the information helpful with my increasing bone mets. Very sorry to hear of your pain, and I can totally relate, was able to walk fine at my last appointment but have been in excruciating pain since which is worsening (spine mostly). I also think I walked too much one day - that night I tried lying on my stomach and I never felt such pain in all my life - thought it was the end, will not try that again!
I did get major relief from radiation both times I had radiation to the spine, but right after the recent successful radiation at Dana Farber, I sneezed which triggered another area of the spine which is even more painful. I am, like you, on my back right now as well - not flat, since it's hard to even get up if flat. Just trying to gear up to get myself back to standing, get down the stairs to get dinner heated up, but can't bend at all, so just putting something in the oven is a huge challenge. I'm afraid that I may need a hospital bed downstairs soon, that automatically moves up and down. Can't believe how quickly this has all happened, I feel so helpless. My sister is in denial - she is actually suggesting we all take a family trip!
Radiation may give you some relief, and some friends are suggesting possibly acupuncture if you know someone good, though I've never tried it and don't know if insurance covers it. I just received a new prescription for pain med to have on hand, but I am so afraid to start on any heavy drugs since I know a cancer patient who recently became addicted to them. I was also prescribed a nasal spray that is supposed to help bones heal. Can't take advil anymore since I'm on blood thinner shots, so I've just been taking extra strength tylenol (but they told me no more than 6 per day). Hope and prayers that you find some relief soon!
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Val- yes my sister is going to go with me. DH is going to meet us there from work. I just read on line that it takes awhile for the Fentanyl patch to work. I just put it on at 2pm today. I have been on my back for two hours and I was able to make it to the bathroom and back with the cane. I don't dare bend in the slightest way forward at the waist and this started today with that. I must have just aggravated it by doing too much today. I have a two lytic lesions on my right side and I feel no pain there at all. That lesion is the biggest and that is what showed up on X-ray. This lesion does not show up on X-ray only pet/ct scan. I can't wait to get back to Dana Farber ... can't go until January, but in the meantime I will get the rads here and pray that the femara and Ibrance start to work.
Thanks for caring.
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3Holly and Carol, I'm so sorry to hear both of you are needing to be flat in bed. 3Holly,I would consider taking the pain meds that were given to you. You need relief and if that helps then I encourage you to take some. I think we all have been in a place where we didn't want to take a stronger pain med. You mentioned the prospect of addiction. When I was reluctant to take anything stronger my nurse said she has never seen addiction and kind of gave me the "seriously???" lecture. I took them and was able to eventually go back to a less potent drug. I'm hoping both of you ladies find some comfort and relief tonight. Carol, good luck with your RO consult and getting some rads to zap the cancer and yes it takes a bit for Fentanyl to work. Big hugs to both of you. We are all here if you need us, and let your family or friends help you now.
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The threads do move fast and I can't keep up either with trying to address each post. But I made a little list of names from this thread and pray for each of you. Being in pain just makes things seem even worse then they already are.
Lindalou- you do such a great job of paying attn to everyone and are such a sweet caring person. I wish I could hug you in person.
RO appt cannot come fast enough. I am afraid of what he is going to tell me.
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I also encourage you to take the pain meds. There is no addiction when it is used under medical supervision for pain relief. At dx, I was given some pretty heavy doses. With tx and rads, the dose was substantially lowered and at some point, I was only on Tylenol and anti-inflammatories. Gradually the pain came back and I went back on narcos and still am. It was increased this week until I have rads to femur and will adjust later on. One word of caution: when strong pain meds are used for a certain length of time, wean off gradually as prescribed to avoid withdrawal symptoms. I tried to stop cold turkey and it was no fun.
I'm really sorry you gals are having such excruciating pain. Good luck to all of us having rads.
Terre, safe travel to you.
Lindalou - Hope your migraine is a thing of the past.
Lots of hugs all around.
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LindaE What is your pain like in your femur. Explain it to me so I can compare to what I am going through. Thanks!
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Loves - I have a 7 cm met on proximal femur and had a rod inserted in April 2014. I had no fracture and surgery was to prevent an imminent fracture. Cannot put weight on my leg, it feels like a knife going down the bone with every step or if I move the leg when sitting or in bed. Also kind of a burning and dull deep pain sensation in the thigh all the time. That's the best way I can explain it. Does this sound like your pain?
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Lindalou, thank you so much for your words of encouragement and wisdom, especially when you are suffering so much yourself, and I hope your migraine disappears fast, those are the worst! In addition to your kindness, I always admire your photos, you are an amazing photographer! I will take your advice and take the Tramodol if I need it to sleep tonight.
LindaE, thank you also for the great advice on the pain meds, I will keep it all in mind. Hope that the radiation gives you great relief without side effects, as it did for me the last 2 times.
LovesMaltes, I see that you sent me a PM, I will respond to that now, and hope you feel some relief soon.
Hope everyone has a restful night without pain!
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LindaE your symptoms sound exactly like mine before my Todd/hip replacement. Have you had x-rays to see how the hardware looks like? In my case the hip bone to which the rod was anchored to dissolved due to cancer and the rod was literally stabbing me. I hope that's not your case but I would look into it
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LindaE, I can put pressure on it but have to be strategic about it. It is so hard to explain the pain, but your description is what I have. I an good in bed but only on my back. My met is in the same spot I think as you. I will copy what the report said... "There is an intense hyperemetabolic lesion in the proximal left femur shaft. This extends from near the greater trochantertic process inferiorly for 5.5. cm suv of 6.2 It does not show complete erosion through the cotisol bone but there is thinning of the lateral wall of the femoral shaft. "
Has this gotten better for you since you had the rod put in? Has the met gotten smaller since you were diagnosed. I am so sorry that you are going through this. I feel so sad tonight.
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Carol, 3Holly - pain could literally paralyze one's life. Dilaudid works very well for Dani. And this business with addiction, if I might add the fact that you should be able to do what matters in your life is extremely important, it's everything.
Linda - the waiting business is an incredible feat Chelle we just got back the TM's for Dani and in the report it says: CA15.3 should be less than 32/ CEA the border is 2.5/ ca 27.29 should be less than 38.6, I understand that it ma vary a bit in different places, but that is what we have.And thanks so much for your sweet support. I must say that on the down days(that are more than not, for me), i go the whole 9yrds. and it's sad songs all day long. I do try to get some humor, either being sarcastic with my daughters or just plain having a good laugh at some good cartoons. Love it. It would be more worrisome if you would not have a down day, I think.
Lindalou - I take Imitrex, prescription, I don't have aura etc..but just terrible migraines coming closer together much quicker these days, if I would not have it, it would be impossible. thanks for the link, will look into it.
Cristina - I think it shows that something is moving in the right direction, so cheers!
Wendy everyone is different, with what shows...I hope you will get your answer really soon.
Milaandra - you know my daughter is been having a lot of tx, bcs back when all tx only lasted a small amount of time, and she always had to start something else, the last 2 yrs were constant scans every 3 mos. - actually we were just talking today and she said she doesn't even remember what "normal" is. Every week, it's a game to schedule a/t that it's not medical, because we never know when she will be called that something has to be done. Somehow bcs I am so used to this, and having had elderly parents, always something going on, I am always thankful for medicine. It's actually a running joke in the house, how I will say yea take this or that, I don't believe in suffering if we could help it.
So Onco felt bad in telling us that the TM's are up, they have been going up, so these are Bt's we have been waiting for. So scans next wk, earlier a few weeks than he wanted but he doesn't wanna take a chance, also because she has this particular biggish lesion on her skull that had been progressing so...The Guardant360 (thank you Deanna) results came back, we'll discuss it with him next wk after the scans and see where we go from there with the new info. He did tell me that he may have had ot give higher dosages from all that cocktail, but he was hesitant because she is so tiny. It's a difficult choice bcs he could be more aggressive, he is known for that, but I, she wants to be able to be mobile and do the mundane things, so we shall see. I don't even know what to think now. Just waiting for something to change, she is just so incredible, dealing with regular life's issues and balancing this monster. We need to be able to get some relief of this constant progression, I really hope he has some terrific ideas next week.
It's really special to have this place to be able to just talk about it.
Good night my beautiful ladies.
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Aurora - how are you? Are you still in the same rehab facility? Yes, I had an X-ray 2 weeks ago and the ortho material is in place and well anchored to the hip bone. So, that's not the problem, thank God.
Loves - the funny thing is the femur met gave me no pain prior to surgery. None, crazy huh? I started having episodes of pain post-surgery. I also have a large met on pubic bone on same side as the femur so docs said the thigh pain could also be referred pain from pubic bone. I had 2 rounds of rads to pubic bone (about one year between both tx) and now can clearly differentiate the pain. Surgery gave stability to the femur but the pain episodes are getting more frequent and more intense. Of course, the docs have no answers. Crazy bone mets as rnsparki would say! Bone scan shows the met is stable. I'm really looking forward to the rads. Last fall I saw my RO and asked for rads at that time, but he decided to wait because it was too soon after surgery and wanted to give it some time to heal.
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Mommal - we must have been writing at the same time. Sorry about the TMs. I still hope the scans reflect good news. You're really awesome at juggling all this, but do take care of yourself as well.
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LindaE yes I'm still in the same rehab place food still stinks and roomate is annoying but I'm doing better and might be able to go home soon.
Thank you for your concern.
Auror
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Hi all! Just got home from a week on the road. It's been a bit grueling so nice to be home.
Dune - it is spring, at least theoretically it is spring. Had a cold snap (hopefully last one) come through and it snowed. Ick! Cold as, and snow. Oh well. It's beautiful today; sun is shining. The south island was lovely; the baby lambs are still little there (it's colder there) and there are huge fields planted with mustard so they just glow gold. I think you should be a snowbird - but instead of Florida, you could come to New Zealand!
Sorry for those in pain. LindaE - the burning inside the leg - feels like the femur is on fire - I have that. But was told it's actually the bone growing back.
Sorry not to address everyone; bit overwhelmed with all the info at the moment.
Hugs to everyone,
Terre
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Morning all haven't posted in awhile but I always keep up with you ladies it breaks my heart that so many of you are in pain. My kids find me crying and give me heck for reading this thread. It makes you sad mama why do you do it. I tell them that seeing what you ladies go through and prevail and the strength gives me strength. Mamaallthetime I hope you get some treatment that helps from your doctor some relief in sight. I've heard so many conflicting things about TMs. My oncologist didn't have any for me after the last blood test. I see her today so hopefully she can tell me more than where she bought her new dress. Terre getting close to your big move you must be getting excited. I spent Monday building a new deck on our house in the interior. Needed to be done before the snow flies as we are trying to sell it. Get pretty pooped nowadays so Dee I admire your garden work all the more.
Take care ladies I wish you all the best hugs.☺️☺️
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Hello to everyone, haven't posted much as I was trying to deal with major back pain after cleaning up the water disaster in our basement. I actually had to resort to taking my Oxy's which quite literally send me into oblivion.
Deanna and Cristina, great news on the lower tm's, that truly shows your treatment is working, I'm so happy for you both.
LovesMaltese, I'm so sorry for your pain and I wish you can get some answers and some relief very soon. Sending you big hugs.
Aurora, I'm hoping you get to go home very soon. Sorry the rehab place isn't to your liking, that makes things harder but I'm praying you're improving everyday.
Momallthetime, you and Dani are always in my thoughts and prayers. Hoping the Guardant 360 results give you some much needed answers.
Terre, welcome home, I don't know how you do it!
Wendy3, my dd's have caught me crying too while reading the thread and said the same thing to me. But I explained to them that all the encouragement and support I get from this thread outweighs the sadness and they were ok with that. Good luck at your appointment today, please let us know how you make out.
Wishing everyone a pain free day. Hugs to all, Annie
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Hey Wendy, good to hear from you. LOL on the new dress. I hope your appt goes well - keep us posted. Shame on me if I made you cry. My new pain meds seem to be doing a pretty good job at controlling the pain and not feeling drowsy anymore. I should be good as new after the rads! Sending hugs right back to you.
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Good to see you Annie as well. Hope your back is behaving.
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hi to all
I am sending hugs out to all in pain. I know that is lindlou,lovesm, 3 holly and aurora plus I am sure others. This thread is so busy which is wonderful, but my brain struggles with holding onto all names and details.
I will add my experience with pain meds to all the wisdom already written. My mets were found due to a cracked pelvis and I was resistant to taking pain meds. Well I am about one year from dx and now I use pain meds pretty liberally. If pain prevents me from parenting they way I should, I take a pill. I reluctantly took pain meds last dec until rads eliminated pelvic pain. Then progression to hip had me taking them again. I finished rads to hip @2 weeks ago and no pain meds yesterday. For me they have been a great tool in staying functional and having a qol. Also, I have found I am not compelled to use them when pain is gone.
I also have an increase in migrains that I blame on AIs.(clean brain mri a few months ago showed no mets to brain). So I keep zophran on my night stand and it halts the nausea with migrains which is my least favorite part.
Good wishes to everyone for a pain free day.
Mary
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Mary, First I see that today you are one year out! Hooray! I always felt that it isn't so much a celebratory day as it is a day to mark a significant milestone. A year marked is wonderful. Such good news that the rads helped your hip. It is amazing that we all have that as a potential help with pain. The migraines are certainly an issue to which I can say frustrate me. I'm rarely without one anymore. You're right about the Zofran holding off the nausea. It helps me too.
Linda E, You have a "mark/milestone" coming up as well. 2 years for you!! Glad you are feeling better.
Annie, Pleased to hear you are doing a bit better pain wise. Is the basement dry now?
Wendy3 Let us know what your onc has to say.
Need to get out and walk, colder temps and wind on the way.
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Hey Lindalou, the basement is dry! I did such a good job at keeping the water from doing too much damage to our basement that I damaged my back instead! Never again! So sorry about your constant migraines, I wish I had a magic wand! I'd use it on every single one of us! Going to get out for a little walk before I head out with a friend later, it turned out to be another gorgeous day, it is 72 degrees. It's not going to last, the white stuff will be here soon.
Hugs to all, Annie
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I have been following this thread closely for a little while. My bmx was in June. Went on femara and had to come off of it after 5 weeks due to extreme pain. Lowere back pain was crippling. I had no initial scans done because oncologist said I was early stage. 2nd opinion confirmed same. Coincidentally I had appointment with pcp who thought I had a kidney issue. Ordered a cat scan without contrast. That cat scan led to the removal of my gall bladder and also shows 2 growths on ovaries size of tennis balls. Sent cat scan to oncologist who followed with second cat scan with contrast which also showed ovaries but also lesion on spine at t2. Spine now over riding the ovaries. Had a biopsy of spine and picked up that path report today. Confirmed mets to the spine. Meeting with oncologist tomorrow. I hope one day to be as strong as you ladies but I am not there at the moment. Scared to deat
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