Bone Mets Thread
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Wow Caryn. Not the kind of lotto one hopes for. I am very grateful I didn't experience a collapsed lung. That must be terrifying. And painful too. I'm glad you came through it to be doing so well and helping us all out here.
Terre, big germ-free hug reaching back out to you.
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dune,
Oddly enough, I wasn't even aware of it! The same non-cancer related PET scan that found my bone met also found the collapsed lung. What was scary was the urgent doctor's call saying to get to the ER immediately and that if no one could get me there within 10 minutes, call 911. My dd and a friend rushed me to the ER, where they were waiting for me, and whisked me away faster than imagininable. Putting the chest tube in, otherwise known as the most brutal bedside procedure in the ER, was beyond painful (natural childbirths was nothing in comparison). That has been the worst part of bc so far and the mind is good softening things as the years go by
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Terre, so sorry you've got the flu, you're working too hard and your body needs rest. Hoping you're feeling back to normal real soon!
Dune, your pic brought tears to my eyes too, wish I had a magic wand but because I don't I send you healing hugs.
Caryn, you're right and exactly what my onc said to me, the risk was small but it was still there and someone has to fall into that small percentage (lucky me). I agree the lottery would have been much easier to handle. I hope the cancer I had in my breast that they told me was lazy is the same in my bones (lazy bones lol). I just think of all the surgeries I had and sometimes it makes me feel sad. The procedure for your collapsed lung does not sound pleasant but glad you made it through and are doing so well.
Hugs to all, Annie
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dune - ouch that pic looks painful. Hope you enjoyed today. Get a good nights sleep.
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Thanks for the nice thoughts everyone. I have strep throat and tonsillitis! Doc said he hasn't seen an adult with tonsillitis in his entire career (he's relatively young though). No wonder my throat is sore.
Antibiotics to the rescue and I'm sure I'll feel better soon. And quit whining soon. 0 -
Terre whine away, tonsillitis is bad enough but strep throat is brutal. Hope your antibiotics kick in soon and you're back to normal before your busy day Wednesday. Hugs, Annie
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Terre, I have not heard any whining from you. All that whining flying around here was me. Anyway, I'm so glad you got diagnosed and got your meds and will start feeling better quite soon. Yay!!!
Caryn, "Putting the chest tube in, otherwise known as the most brutal bedside procedure in the ER, was beyond painful (natural childbirths was nothing in comparison)." How awful. Did it have to be made so painful? Well let's hope nobody here has to go through that!
Hi Patty. Yeah, they get real angry sometimes. One thing about having them be such a visual reminder of what's going on inside my body could turn out to be kind of good. If the taxol is working, maybe I will see them shrink or even go away. I know they will leave some scarring, but I would really like to see them die away.
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terre - oh my strep and tonsillitis- no wonder you feel so bad. Hoping you are feeling better soon
Dune - thinking of you today - holding your hand. What time is chemo appt ? I too hope taxol shrinks em. A battle scar is ok, we can live with that , right. Is your mom going to be there today ? Wish I had a good joke for u today but darn i can't think if anything.
Good morning all. I had a great weekend. Feeling stronger everyday. Thinking tomorrow I'll go for a much overdo haircut.
Hope everyone is off to a great start today. Hugs all around
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dune,
My thoughts are with you today. To answer your question, a collapsed lung is considered life threatening. In an ER the goal is to reduce the threat to life ASAP, so pain control is secondary. They moved very fast
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Dune, thinking of you this morning! Hope you got some sleep last night and all goes well with that 1st infusion. Mom will be with you, yes?
AnnieO, Hope your scans find only healing bones. Sorry you have to wait until Friday for results. The waiting can be so hard.
Patty, So happy to hear you are feeling better lately! How was your visit with your niece? Yup, it sure is nice when they care enough to come visit their Auntie. Hope they pamper you a little (or a lot) when you go for that haircut.
Terre, hope those antibiotics are doing their job and you start feeling better soon. Isn't it aways something?
Myra, Thanks for sharing the recommendations from your doc visit. Not exactly sure what an interventional doc is. Are you in an Ibrance trial and is that part of it? How have the se's been?
Well, last months PET showed slight progression, still bone only, but 2 new sites and more activity in right hip (was around 6 SUV, now 9!) My mo gave me the option of staying on Arimidex or going to Faslodex. Had my 1st Faslodex tx last week. Now of course I am 2nd guessing whether I made the right decision. Sigh...
Wishing everyone else a pleasant day.
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hi job ur, an integrative/interventional MD is a doc that adds the alternative and holistic aspect to your tx. Yes I am on Ibrance, but not a trial. Just started third cycle.
Good day to al....Myra.
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Dune - I'm sitting here in the infusion chair for my Herceptin/Perjeta and getting caught up on this thread. I hope your appointment is going well. I missed what chemo you are getting. I was lucky not to have many problems when I was on Taxotere, mainly just skin rashes (and of course hair loss!). I truely hope the same is true for you, and that it takes care of those lymph nodes lickety split!
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Caryn, OUCH! I can imagine the thoughts that were running through your head, and that's not a nice place to be Everything went well. I had you all holding my hands, so I didn't have the slightest urge to cry. I got some heartburn/indigestion during the treatment, so they turned it off for a little while and I sipped some coke and ate some goldfish. Really healthy food they have there. LOL. I haven't had goldfish in, like, forever; and they were quite tasty. Anyway, when the drip stopped, the heartburn eased up then went away. They resumed it without incident. When is the sleepy supposed to hit? I'd love to have a short nap now, but I don't think I am sleepy enough. I started feeling sleepy after they got the first drip going, which I thought was the benadryl, but turned out to be the steroid. HAHAHAHAHA. Only me.
I'm so glad you are feeling better Patty. You sound really good. Enjoy that hair cut. Shutterbug, you are probably done by now, and I hope it went smoothly.
I'm sorry your PET showed progression jobur, although it did do you the courtesy of staying in the bones. I think you did the right thing. I wanted to switch mine when we were seeing progression and rising TMs. Instead we waited and it went to the lung. Hopefully it isn't much in the lung and the chemo will get rid of it, but still. You know. It's bad enough to have it at all without having it go spreading itself all around. Cancer is a rude bugger. That's for sure.
Oh how I would love to take some xanax and go to sleep, but I don't know about that. I'll probably sound like a real luney tune here, but these doctors who want to reduce or take me off the xanax at this point in my life, as a stage IV cancer patient with the cancer actively metastasizing, these doctors should be given massive doses of cortisol for a few weeks so they get the fact that this is not a good time to even put that in the picture. Geez.
Rant over.
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LOL, Dune! You are so funny! Glad the infusion didn't dim your sense of humor, and so glad it went well. Not sure about feeling sleepy. I think the steroids will counteract that for awhile. Just remember to drink water to flush all of that stuff out.
Patty, so glad you're feeling stronger! And Terre, glad you got an antibiotic for what sounds like a killer sore throat. Hope you can maybe add some rest to tx mix.
I was away from the computer yesterday and have barely had time to skim all the posts I missed, so apologies for not catching everyone, and know that you are all in my thoughts and prayers. Oh, one of the things I did yesterday was meet up with my sister who was headed home from a medical conference in SF. And one of the astounding things she shared is that there is such a huge shift in the way researchers are thinking about cancer, some are beginning to say, if you were tx'd for cancer in the past and survived, you're fortunate, because so much of what's been done until now is all wrong. In other words, there is so much new information re. genomics and immunology, the future is looking very exciting and hopeful!
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Hi all ,Dune - first tx done - congrats! I honestly don't get the Xanax thing! I can think of a few things other than cortisol... Really what is the point?
Jobur, I would do the same thing you did. Hope this new tx is easy on you with good results.
Terre - tonsillitis? you must be getting younger! Hope you feel better soon.
Patty - really really nice to hear you're feeling better.
I saw my Onc this a.m. She doesn't think there is an added benefit to having a PET scan at this time. She was quite concerned about my new and increasing pain, my night sweats, the higher TMs and a bit of weight loss. She said "I won't hide from you that all this may mean progression and a new tx". That kind of hit home although it's not something I didn't know would happen, but it's the first time she was so blunt about it. Anyway, she ordered at CT Scan from neck to below the knees and a bone scan. Hospital already called me for the bone scan tomorrow morning 8:00. I see her again on the 28th of May to give us time to have CT and results. The radiology dept is so busy these days that results take about 2 weeks! She asked I let her know the date of scan so she can put a high priority on it. It's gonna be a long month. Next tx would Aromasin + Afinitor. What's even more depressing is that she say's she never really saw great results in her patients with the A/A combo - but lots of pneumonia and lung infections.
Hugs to all - Linda
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Hello everyone,
Jobur, sorry to hear of your slight progression but glad to hear it's still bone only. I have so much anxiety around scan time, especially having to wait for results. Thankyou for your good thoughts and I am praying your next treatment does the trick!
Patty, so happy you're feeling better and stronger everyday!
Dune, you have the first treatment behind you and did so well, and yes your sense of humor is still in tact. You rock, don't ever change!
Shutterbug73, hope your treatment was gentle to you as well.
Well my scan is done, now the waiting begins.
Hugs to all, Annie
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Hi all,
Dune - congrats on getting through the first round and not losing your sense of humour.
Jobur - sorry to hear of progression. Kick it to the kerb!
Linda - damn! Not great news. Here's hoping that it's healing bones and not progression. Sending good vibes your way.
Annie - Just keep singing Tom Petty's "the waiting is the hardest part".
Linda should sing it too. The nice thing about Tom Petty is that you can sing a bit off key and it still sounds ok. Hate waiting for scan results.Patty - so glad you're feeling better!
Shutterbug - hope you're doing well following treatment.
Sending hugs to all,
Terre
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Terre, lol at Tom Petty and it's pretty much a guarantee I will sing off key. Hope you're feeling better today.
Linda, I am praying real hard that this is not progression for you, sending all of my positive mojo your way! Good luck with the bone scan tomorrow morning, I'll be thinking of you for sure.
Hugs, Annie
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Annie, We'll be singing a little duet together -- Oh my! Thanks and I also hope you get good results.Linda
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Hi ladies, I just started a thread about slight progression in my spine and what to do. Please chime in, I can use all the advice you can give.
Jobur-Sorry about your progression. Now I am wondering if I need to switch from Femara. My last PET showed an increase in SUV from 2 to 3 in the thoracic spine. I was hoping we could zap it with rads and continue on the Femara but I don't want those cancer buggers to spread.
dunesleeper-it is crazy to me that your Drs would want to take you off Xanax at this point! I seriously don't get that line of thinking. I take Ativan but I also use Xanax for panic attacks or to help sleep at night. I am glad you tolerated your chemo. I did it when first diagnosed 2 1/2 years ago and it wasn't as bad as I had anticipated.
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Hello to everyone, sorry I'm not really good at remembering names and connecting to events but know I read all your posts and I find inspiration on how much strength you all have in going through what you go through. Me? I have my appointment with my onco on Wednesday and she should have the results from the PET scan. She already switched me from Arimidex to Exemastane due to the TM's rising, but I am having so much more pain since the switch that I'm not sure it's working. We'll know more on Wednesday. In the mean time taking 800mg Ibuprofen and 15mg Tramadol every 8 hours and sleeping a lot. The pain is always there but I don't want to increase the dose on the pain killers. Still nothing compared to what some of you are going through.
Hope everyone goes on to have a pain free week in as much as possible,
Aurora
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jobur - sorry about the progression. Sounds like you made a good choice
Dune - 1. Chemo down. Hooray ! Glad everything went well. Yes I don't know why they always gave bad for us snacks ut they do
Linda - good luck in your scan tomorrow. Hoping it does not show progression.
Annie - hugs while waiting on scan results.
Deanna - glad to hear what your sis said. Exciting and hopeful are great words to pair with stage IV.
Agora - thinking of you while you wait on your scan results wed
A lot of scan waiting going on. Hold tight girls.
I had another great day. I did get a 3 hour nap but other than that I have felt wonderful.
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Aurora - sorry for your pain, but it could be a good sign when you switch meds. Good luck on Wednesday.Linda
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Good evening ladies! Please stop beating yourselves up. You have EVERY RIGHT to express your feelings here. A lot of scanning going on. The best of luck to you all. I hope it all turns out wonderfully.
Dune, so glad 1 is down! Drink, drink, drink
Myra.
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Anyone there? I took my oxycontin at 8 pm but now I'm having a stabbing pain right at a developing bone met- one that is not yet being radiated. I think I need to take a percocet so I can sleep. I swear I can feel my mets growing while I'm waiting to start treatment. I think the Tamoxifen was not stopping the cancer but was slowing it a bit. I swear there's been more pain since I stopped taking it. Can't wait until Wed to see my onc to get myself into menopause. I want this estrogen out of my body, I feel like I'm loaded up on it. My levels of estradiol are like a pregnant woman according to my lab results.
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Oh Cjanet, I know what you mean. I felt the same way when I was first diagnosed with Stage IV. And I was full of estrogen and having horrific periods still. So getting tossed into menopause wasn't easy, but it actually made me feel better. Hang in there...sending hugs.
Myra - loved your post and had this vision of Dune with us all standing around her, ala college party..chanting Drink Drink Drink!
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Following on to the earlier post...things are moving fast, which is good!
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On a happy note, you may remember me posting about the kitten from the drug house with the "broken" leg? (the leg was infected and had been neglected so he'll always limp). He also had an injured nose, was full of worms and fleas, and his ribs stuck out - just skin and bones.
Well, he's grown by leaps and bounds and now he's bonded with a lovely young girl and provided that he gets along ok with the resident cat, he has a new furever home! I have her mom's permission to post her picture...her name is Sophie and she's just lovely.
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good morning all....a bit of sunshine for you all...take it to heart!
https://www.facebook.com/ldistaulo/posts/101010626...
Myra
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Dune, How are you feeling today? Now keep in mind when Myra encouraged you to drink, she wasn't talking Guiness! (Attempt at joke!)
AnnieO, hope you've got lots of little things to keep you busy while you wait for Friday.
LindaE, Especially thinking of you and sending good karma your way. The weird and questionable thing about my "slight" progression is that I was feeling so good in April. Pain and depression way down, sleeping like a baby, and had a month long vacation from constant hot flashes. My CA15.3 tumor markers have never been elevated, and my CEA was down. Now I wonder if the lack of hot flashes was an indication that Arimidex had stopped working. Anyway, I only blather on about all this in hopes that your increase in symptoms and TMs might mean the opposite too! Is Faslodex available up there? Might be worth asking your MO about as another treatment choice before A/A. Anyway, hope your bone scan went smoothly and you aren't in too much pain after lying on that hard table for so long! Do you get your results soon? Sorry you have to wait so long for the CT.
StarShine, An increase in SUV from 2 to 3 does not sound like a lot. My MO mentioned tumor flair as a possibility for the SUV increase on my PET, but I also had a couple of new areas of uptake, so figured I'd better switch. Hope you have a good visit with your MO today and come to a decision you feel comfortable with. 5 kids!? OMG, how do you do it? Hope a couple of them are old enough to help some.
Aurora, Hope you get some good news at your doc visit tomorrow. I am relatively new to this stage IV stuff, but it doesn't seem like pain is always a bad indicator, progression-wise. Sorry you are hurting so much. Maybe a conversation about pain meds would be helpful when you see your doc.
Patty, Keep on with those great days! Love hearing that from you.
KCM, now don't hate me forever, but I am not much of a cat person. However, that kitty is the cutest ever! Looks like kitty and her new "mom" have already bonded. Hope the adoption works out. Are you feeling any better?
It is the height of spring here, my absolute favorite time of year! The peepers (frogs) have been singing nonstop and last night the owls joined in for a few bars. With the full moon shining down on our little river, DH and I just sat quietly together and soaked it all in.
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