Bone Mets Thread
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Sergio's news y hope your arm met pain leaves soon. Good news I deed
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Annie, sounds like you have about as much pain as I was having. I couldn't lift my arm, had to lift it with my other arm. Mine is much better now, but for a while there it was so bad. The head of radiology once told me about something he could see on the CT because as he said "no one actually reads my reports" (it wasn't the arm met) I told my PCP yesterday that he & I will be going over every report he gets & he was good with that. He's a great Dr, old fashioned, doesn't use a computer, still writes everything on your chart long hand.
Hope you get a handle on this pain soon, Cheers, Dee
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All I can say is that this humerus stuff is not humorous. Really bizarre that they don't tell you about mets, especially when you're complained about pain! Glad the rads have helped, Annie, and hope you get pain relief soon Dee.
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OMG, ladies, the humerous stuff is outrageous!! No excuse, for sure, especially when coupled with pain. What I've done since day 1 of my dx is to get a copy of every scan that is done & read it myself!! Of course I can't have it until the Onc tells me the results, but then I don't leave the office without it!!
Finally I have some good news after blowing through 2 chemos since August & beginning Halaven in February. After only 2 rounds of Halaven, the liver mets are responding favorably! They are smaller and no new liver mets!! Thank goodness!! It's been so long since I had any good news. So far, since 2010, the only treatments I've responded to are femara, taxol & now Halaven. Scary, risky & weird, if you ask me. Consider myself lucky to be alive to tell about it!
Now if the back pain/spasms can only be figured out. Going on 3 weeks of pain. Little better, but not much - even hurts to drive. Had a MRI of whole spine, although every vertebrae has mets, no worse than the MRI in January. Having bone scan next week just to be sure no new mets in rib/scapula area. Otherwise, trying titrating dose of steroids to see if the inflammation will calm down. I still think it's the chemo - a side effect. My theory is the chemo makes the muscles so sensitive that the least little thing sets them off, because goodness knows, I didn't do anything strenuous!
Anyway, it's nice to have some weight off my shoulders, for now. It's been such a long time! Although I don't minimize the support friends give me and the hand they often extend, bottom line, it's hard doing this when you are dealing with it alone, on a daily basis. So glad you ladies & these boards are here!! Thank you.
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Annie, that is inexcusable that your oncologist ignored a met that became that serious. We don't have enough to worry about with the disease and insurance, etc.; you'd think we could at least rely on the people we trust with our lives to do their jobs. It's nuts.
I am so fortunate to have a great MO. I've been seeing him for 9 years, and he never forgets anything we've ever talked about, medical or not, and he explains things in such a reassuring way. I know I can trust him, and that means so much when I read what some of you are going through just to get the proper attention paid. I saw him today for my monthly check after the blood draw last week, and I am thrilled that my tm's are down again. In January, before I started treatment, they were 99. In February they were 44, and today they were 34. The downward trend means the meds are working, and I am so grateful. He reiterated today that he considers this a chronic condition that can be managed, and that I shouldn't worry too much about "how much time I have", but to just live my life the best way I can. That's not to say there won't be challenges in the future or "hard choices" (his words) to make, but I'll cross those bridges when I get to them. I see the strength and tenacity of all of you in the face of setbacks and complications, and it inspires me every day.
SyrMom, so good to hear your mets are smaller. I hope they can get to the bottom of your back pain.
Goodnight all. Have a good weekend, and thank you for being here.
Sharon
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That's great news, Sharon8.
And fantastic news SryMom! About time you got something to smile about!!!! I think your theory may be correct about chemo - it makes sense. And I also think that carrying worry/stress around keeps your muscles tensed up on a subliminal level. That, combined with chemo, probably just makes things cascade. I know that I have times when I don't realise how tensed up everything is until I make a conscious effort to relax everything. And I'll realise I'm clenching my jaw and everything is on high alert. I'm hoping you get relief from the back pain soon! You've probably said this already, but have you tried meditation or a relaxation exercise? I took yoga years ago and the relaxation exercise has stuck with me over the years and is the only way I can get my brain and body to relax.
Hugs to all,
Terre
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Syrmon - That's excellent news! So happy for you. I also keep copies of all my results.Sharon08 - Great news! That's cause for celebration! I am also very fortunate and grateful that my Onc is very attentive and never dismisses any new or on-going pain.
Kwc - You're right about relaxation. But darn, sometimes I just can't figure out what triggers so much pain. Sometimes I feel almost normal and then bang! But I'm lucky to be able to tolerate well strong pain meds.
Dee - happy to hear you're feeling a bit better. And bugger they didn't tell you about the humerus met - but at least it was there all along and that means no progression. But is unacceptable that they did not mention it.
Patty - hope you're continuing to feel better?
Annie - glad that you get to see the Onc you like. Hope it continues that way.
Dune - 2 weeks of rads done - hope it's doing the trick.
Hugs - Linda
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Thanks Sharon & Kiwi ... Sharon, that's wonderful you have an onc like that, ideally that's what we all should have, especially with this horrid disease we deal with. Unfortunately, that hasn't been my experience & also adds to the stress. But that's another story for another day!
I have tried yoga & meditation. I can't tolerate the floor for yoga & haven't been motivated enough to try chair yoga, perhaps in time. Right now anything is too painful. I'm on & off with meditation, but agree on it's benefit.
Have a good day.
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Hi all!
Well, touch wood, I seem to be on the mend, I haven't had a coughing fit for 24 hours now. I'm still sleeping on the couch so I don't bother DH, but I warned him I'm coming back to bed on Monday night. I only have enough cough syrup thru Sunday night!
Syrmon - Glad to hear that it's going well. My onco suggested 1 tylenol & 1 ibuprophen taken together for my back pain. It worked better than tylenol 3 which made me ill.
Sharon08 - Great news that your TM's are down again!
Patty - hope you're feeling better.
Annie - Hope your arm is on the mend. Xrays will hopefully show that it's nothing (other than that pesky met)
Dune, romansma, Linda, KCM, & everyone else that I've missed, hope you're doing well. It's another beautiful day here, so I'm heading out to the garden to pick weeds & mow the lawn.... again....I know, better than shoveling! Cheers, Dee
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Hello everyone,
Sharon, great news about your tumor markers dropping again! I was thrilled when mine went down to 22 but when I found out they dropped again to 17 I was beyond ecstatic! Praying yours keep on going down and stay there!
SyrMom, glad to hear things are going well, that is very encouraging news. Praying for you to figure out what's causing your back spasms and for some relief from them.
Hi Linda! Is the weather improving there? We had a couple of nice days and a high of 9 which felt extremely warm after the severe cold and -20 temps we had all winter. Today however is cloudy and damp and I can't seem to get my butt moving.
Dee, jealous to hear you're mowing the lawn. I just caught a glimpse of the grass for the first time the other day. Still way too much snow to melt. My arm is on the mend and the x-ray is just to keep an eye and make sure nothing worsens otherwise I will need surgery to have a stabilizing rod and screws put in. So far so good and I pray I never need that surgery.
Hugs to all, Annie
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HI all,
SryMom, I don't actually do yoga, just the relaxation exercise when I'm in bed.
Lately, the only vigorous exercise I get is jumping to conclusions. Finally got my Celebrex prescription sorted out and am feeling much better today. I knew it helped, but didn't know how much until I went a week without it. We're waiting for cyclone Pam to hit; hard to believe we're under a severe weather watch with such beautiful blue skies and no wind whatsoever.
Annie - glad your arm is getting better.
Happy Pi day to those of you still on Saturday!
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hi all feeling some better every day. Just exhausted , weak and dizzy today. Got up this am and in the way to the bathroom somehow I fell. No idea why but my knee hit the ground and my head hit the drier. Woke everyone up. Scared. Can't believe me that i am fine and no idea why that happened so mostly waiting on help for getting around. Had / more oops how'd I get to the floor this am. But better now.
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Patty, hope you're ok! I fell a couple of years ago, (on my way to the bathroom) and luckily didn't hurt myself, I did a bit of damage to the bathroom door casing!
My Dr couldn't find an answer to why, he just said, sometimes in the night, your blood pressure can drop suddenly & you just pass out. Hopefully this is the case with you, but you should get checked just to make sure.KCM, I hadn't heard about cyclone Pam, but I just came in from doing some yard cleanup because a squall just came thru & I didn't want to be out in the trees with this horrendous wind blowing.
Annie, I know I shouldn't be complaining about mowing the lawn & the weeds are so bad already, they are setting seed! Don't they know it's mid March????
Happy weekend to everyone! Cheers, Dee
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Hi Annie - we had a few days of mild and sunny weather and boy did that feel good. Small storm today, damp and cloudy. Oh well, next Sunday I'll be in Cuba .... I've been watching the weather there - it's just gorgeous! (It better stay that way!). My bones are screaming for warmth and sun.
Patty - I hope you didn't hurt yourself. You need a break! Not easy to accept help, but sometimes we have no other choice until things get better. Be kind to yourself. You deserve it!
I have a busy week before leaving on vacation. Lunch with a girlfriend, appt with my Onc, Aredia tx, hairdresser, packing (amazing all the meds and supplements to pack!). And it's the first time flying since I had a rod inserted in femur - it's gonna beep. I plan to ask my Onc if Ibrance can be obtained on a compassionate use basis here in Quebec. Not sure that I would qualify, but curious to see if it could be a possibility in the future. Annie - have you discussed Ibrance with your Onc? No answers to my emails to Health Canada questioning when they will approve Ibrance.
Linda
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Wow, Patty, be careful. Take it slow. I am still in bed at 2 in the afternoon, got up, shuffled a little down the hall and came back to bed. Ibrancekicking my butt right at the finish.
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Linda - your rod may not beep. Mine doesn't. Of course, plenty of padding around it in my case. The airport security people said it shouldn't beep for just a femur rod. So excited you get to go to Cuba! Can't wait to hear all about it.
Patty - how terrifying for you! Sending good thoughts your way and hoping they figure it out quickly. You really deserve some good news and good health!
Romansma - sorry Ibrance is kicking your bum. Hope it kicks the cancer and you feel better soon.
I see there's a heat wave on the west coast of the US. 96 in Santa Monica! Wow!
We're headed toward autumn. Days are getting shorter, which makes me a bit sad. I love summer. I have a friend of a friend who spends his US winters in New Zealand and New Zealand winters in San Fran. That would be the way to do things!
Hugs to all,
Terre
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KWC - then not to worry - plenty of padding me too!
Linda
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Romansma - rest up girl. Feeling stronger. Nothing like resting then pushing it. Got an easy made supper just out of freezer from a friends donation. Frozen enchiladas , rep pot with cheesy onions. Way throw away , easy cleanup. . Got a little headache from falling and a is purple blue from hitting the floor. Dizzy. Keeping me grounde between couch and recliner. Don't strap me from giving l lessons va chair.
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Patty, hope you are feeling better, that is so scary. Best to rise up slowly before standing, BP can drop after reclining. Perhaps you need fluid, too. Your labs could also be off. Are you eating o.k.? Be careful and make sure you follow up. Some meds can cause dizziness too. Feel better!
Romansma, are you headed into a week off now? Hope you recoup quickly. Any other issues on this?
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Thanks, Patty and syrmom. No other side effects, at all, on the Ibrance, untill this weakness suddenly came upon me. I have 2 more doses before my 7 days off. I also have MO appt this week so I will have by blood drawn and hopefully we will know what the culprit is. I've heard from a few others that the final week is an little tough so I feel like this is all normal. At least it got my older kids to notice that I needed help. They have been doing dishes, vacuuming, and asking me what I need the last few days. Nice! I'm kinda wondering what is causing the weakness. I know low white counts are common and I run low even without treatment, but that doesn't cause weakness, does it? It would have to be red count or something else. Increased achiness too. I will find out this week. I'm stil pretty thrilled to be taking Ibrance. I felt great all the way up till a few days ago. I can handle a little down time each month if it works!
Patty, hope you are feeling a little better today. Let your family cater to you and take it really slow. Falling is not good for us when we have so many mets compromising our spine, hips, and pelvis. Careful, k?
Hope everyone else has a fun Sunday. It's been soooooo warm here in Socal lately, in the 90s. Not a fan, but oh well. Will be propping myself on the couch to help my youngest with his science project this afternoon. I ordered a new bbq but haven't assembled it yet. Maybe I can talk one of my older boys into assembling it for me
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sounds great Romansma
Hello all slept all night and rose feeling rested. Maybe egg biscuit sandwiches fir everybody fir breakfast. It was nice to be able to do stuff but exhausting. Ate a little but then dressed warmly and held dh hands shine we walked up and down the dry driveway. The yard is so very muddy. Felt great to have the sunshine in my face. Dh put my rocker on the front end if the oorch that is not covered , rather faces the sun. Felt great. So ready for spring. Body is tired so back in For a quick rest so I can get back outside !
Sad note my dhs grandma died this am after along drawn out cancer battle. They live in Tx. She really wanted her grandchildren to be the pallbearer a but there is no way i can ride 8 hours and hubby is freaked out - right fully so - to leave me at home. Dhs mom is being very understandably. Simply out of our control to go there in my condition
Hugs all
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Patty my condolences and happy you are feeling better. Nothing like the sun on your face. Myra
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Patty - deepest condolences on your loss. I know it's hard not to be able to travel to the service, but please don't beat yourself up.
Romansma - glad you're doing well overall. Hope they figure out the weakness quickly and you get past it and can continue skipping down the unicorn/rainbow/kitten path.
Hugs to all,
Terre
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My condolences to you Patty and your family.Hugs - Linda
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thanks ladies. Bi certainly feel the love. Can't wait to be the one encouraging orhers instead of sucking up all the encouragement. I am well on my way.
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You take all the encouragement you need, Patty! You've sure been through a lot. I am in awe of you...I'd be a complete disaster.
Sending much love and hugs to all,
Terre
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I'm so sorry about your DH's grandmother, Patty, but glad you are putting your health first and not trying to travel or stay home alone. And glad you could get outside and get some sunshine!
It will take me awhile to catch up with this fast-moving thread. I spent the entire weekend working registration at a very busy autocross fundraiser. Totally exhausted tonight, but it certainly beats the excruciating pain I was in last year at this time. Deanna
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Romansma, hope you are feeling a bit better. Maybe it will get easier with each session.
Patty, sorry for your loss. But I agree that you need to take care of yourself first, you've been thru too much lately.
Hope everyone is doing well. Cheers, Dee
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Hi all. I'm just stopping by to see what you are all doing. You have already mowed the lawn a couple of times Dee? I know that's how it comes when it comes. There's just going to be soooo much mud. I'm not looking forward to that. I think we need to freeze time right about here. My condolences to you and your family Patty. Life needs to give us a break. Oh well. What do I know? At least you got to sit in the sun a bit. That's nice. My last treatment is tomorrow. I'm not sure when I'm supposed to hook up with the radiation oncologist, but I did have to get bloodwork done this past week. I don't think he requested tumor markers, just CBC. That's OK. We'll draw for TMs and CBC in a few weeks. I'm a little ouchy and a little grouchy, so that's all for now. Y'all take care now, ya hear?
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Good to hear from you Dune! Hooray for last treatment!
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