Bone Mets Thread
Comments
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Deanna...thanks for the t-shirt info from Holley. I just ordered one. My DH was staged at 3B. He knows only too well what that means. It was crazy last summer as I was going through radiation for the 4th time when he was diagnosed. Then his surgery at an NCI hospital about 2 hours away and then I had a 10 hour spine fusion surgery because of mets in my spine, 2.5 months after his surgery. We were quite the pair! Glad that is behind us.
Love your proverb.
Best to all.....
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Yikes, this saw this on Google News. Romansma, isn't this where you live? http://www.newsledge.com/bogus-doctor-facing-charg...
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Deanna,
This has beenon our local news for the past few days, as Richmond is in the SF Bay Area. Sadly, there are always some bad actors. His web site was still up the other day.
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Hi all,
Dune - I can relate to the poo. Won't get into that LOL. Will just say it is hard work everyday... Will keep you in my prayers.
Annie - get plenty of rest and boo on the hot flashes. I went for dinner with BF tonight, in a restaurant with AC, and I had a hot flash and my head was sweating bullets... How elegant!
Momallthetime - Will be thinking of you and Dani this week. Do you have something for your anxiety?
Patty - Oh no! progression. I'm sorry. I'm with you on the easyness of Femara. Hope your next tx will be gentle on you and kills those buggers. One day at a time as you say.
Romansma - Amazing how you are proactive with your tx. You truly are an inspiration to me. Hope you find the right pain meds and will be praying for good MRI results.
Deanna - You are always full of good of resources. How's that cold?
Jobur - Great pic!
Cristina - Best of luck with your second opinion.
Wishing all of us a good week.
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Thanks, Linda! Wow, Deanna, that news was scary! Yes, I'm in Ventura County, but luckily never came across this guy. I swore off the news back when I was initially diagnosed and haven't looked back so I hadn't heard about this. Also, thank you for the info on USC, Cedars, etc. my preference of those was USC, also becaus it was designated. However my initial research led me to City of Hope, so I haven't given up. Wish I was a little more familiar on how this insurance thing worked. Hoping to figure that out better this week.
Having one of those intense pain days. Really wish I knew what brings them on. It's as if I'm not taking any pain meds and I'm on Oxy, Dilaudid, and Celebrex, wth!? Thanks for the input Patty and Lindalou. Guess I will just have to try them and see what works best for me. Really hoping for longer term pain control. I feel like I'm on a roller coaster all day long these days.
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Patty, 41celsius is around 110 farenheit so it was pretty hot! How are you feeling this evening?
Jobur, what a beautiful picture of you and dh, breathtaking scenery!!! Thanks for sharing that.
Deanna, I second what Linda said and you're so helpful! Can I have the link on how to get one of those t-shirts? Is it possible to get it if I'm in Canada?
Lindalou, can't imagine the stress of you and dh going through that at the same time. I'm glad it's behind you too.
Linda, I certainly didn't look elegant today, sweating bullets and sticking to my sundress. Just came in from outside where the bats are going crazy because of all the mosquitoes! Another few days of this apparently.
Hugs to all, Annie
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Patty- so sorry to hear of your progression. I hope your new treatment kicks those met butts.
I went to the pool today with my 3 year old son and basically spent the day like I didn't have cancer. Very low pain today. Maybe bc I laid in bed all day yesterday!
Hi to everyone else!
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annie. - 110. That's hot !!! And mosquitoes. Ugh. Stay inside.
Deanna - I agree you have so much knowledge of thus crazy cancer world and you always know what to say and somehow manage to make us all feel connected. Thank you
Cjanet - yes !!! So glad you had a great day with your very young son. Glad you had the energy for it. I take it he likes the pool? Is he swimming ? Days like that make the fight worthwhile
WARNING: major pity party to follow. You may want to skip the rest of my post.
I am wide awake. Just the word progression has my brain swimming in possibilities and the truth is we don't KNOW anything for 100% positive yet. Of course being alone at night in the hospital doesn't help. My brain is screaming : get up, get dressed, get all these iv's and heart monitor off , throw my running shoes on and just leave. Just run as far away as I can ( which wouldn't probsbly be to the elevator before I ran out of energy lol ). But then what ? Wherever I go its going with me. Ugh!! Maybe just stand on the rooftop and scream about how terrible cancer is and why me , why any of us but again when my voice gives the dang cancer is still here . I want to beg God not me and promise God all kinds of life changes to negotiate a new healthy body plan but God doesn't work that way. I HATE cancer. I hate feeling out ocontrol of my own life, I hate being scared to make any plans for fear of cancelling them and disappointing everyone again. I hate my families day revolves around how mom is today. I hate the fear in my dh and dss eyes. I hate worrying how this is affecting my children. I hate the thought of dying an leaving them without a mom. I HATE cancer. It sucks ! It is def not for the wimpy.
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(((Patty))), night time alone in a hospital room has got to be one of the loneliest place on earth. Yes, you have mbc -- and we all hate what you're going through -- but hopefully when they get things sorted out you will get on something that will work for you for a very long time. Don't lose hope or give up your faith! We have one very recent new tx that's working great for many women (Ibrance), and several more in the pipeline (trials). And who knows what might be next? One day at a time. This is a dark night for you, but I'm so glad I was up to catch your post so that I can pray for you now. And ask the nurse to give you something to sleep if you need it! Tears are healing, and tomorrow is another day, and hopefully things will look brighter. You're not alone tonight. I'm praying for you, as I know your family is and anyone else who is up to see this.
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So sorry, Patty. If it helps, I know, with every fiber of my being, just how you are feeling tonight. There is no escape. Just here and now and that is the only thing that helps us keep going. Stay in the moment and try not to think too far ahead. Tomorrow is a new day and maybe it will be a bit better than today.
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Hugs Patty! And Deanna's right, sometimes we need to cry.
We had good friends come to stay this weekend - haven't seen them since my diagnosis & giving them a summary of the past 8 months, I realised I haven't cried since month 1. A little voice is telling me it is time, as much as I am feeling great & able to live as normal as life as before diagnosis, the fear of that monster we can't run away from is still there.
Hoping its a good week for everyone & sending lots of love & positive energy out to all of you facing results & tx decisions.
xx
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Hi Ladies,
It's been hard to keep up with all your posts so excuse me for missing things but the chemo was keeping me under the weather with some complications. Finally this 5th chemo I'm doing better thank goodness. Seeing improvement with my breathing and now my bone pain from bone mets is easing some .. YAY!!!! That means its working 2 outta 3 .. praying it works on my liver also. That is the one my doctors are most concerned with now. Thinking positive! Hope your all doing well.
Cathy
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Patty - I missed your post during the night. Just to say that I feel your pain and just wish I could do someting about it. Bigs hugs and lots of love coming your way.
Cathy - Yay and praying with you.
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Cathy, so glad your newest chemo is working for you! That's great news! Praying it's blasting those liver mets to smithereens!
Patty, something my UCLA onc told me recently popped into my head as I was praying for you last night that made me question something you've been told. You mentioned having an MRI. Is that what they used to evaluate you and determine some progression? And what are they comparing that to? I'm asking b'cuz I was told you cannot accurately compare an MRI to anything else like a CT or PET, and I started wondering if they actually had an earlier MRI, because -- until what sounds like a relentless viral infection flared again a few days ago, you'd been feeling progressively stronger and even having really good days. So something isn't quite adding up for me. Plus there's that issue re. healing looking a lot like progression and radiologists sometimes making an overly aggressive call based on our hx.
Karz, good to hear from you and know you're doing well!
Annie, if you're on FB, you can access the t-shirt order link via Holley Kitchen And The Cancer Lifer's Page: https://www.facebook.com/HolleyKitchenCancerLifer. It's an excellent group, and she's doing some great awareness stuff for mbc. If you're not on FB, here's the direct link to the Teespring page: http://teespring.com/cancer-lifers_campaign3
Linda, my sore throat never turned into a cold, but has lingered as a weird, strong sore throat now for days. It's also been raining here for two days -- very unusual for us, but also very much needed since we're on water restrictions and mandated to reduce water use by 35% -- and I've been surprised at how much achier I feel with the increase in humidity. I guess our very hot, dry desert air is more of a benefit to bone mets and/or anastrazole-induced arthritis than I realized, and it's made me aware of how much rougher this dx must be if you live in a wet climate. And Annie, 110 is bad even with no humidity. I can't imagine what that's been like for you.
Patty, let us know your ETA on getting out of there, as well as anything else you find out!
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Patty, I second Deanna's concern with your MRI related updates. Your ER treatment sounded more like for food poisoning kind emergency, hardly caused by the bone mets, nor by the hormonal treatment that you are receiving. Hopefully you would not really have to change your treatment if the MRI results could be studied further.
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Patty, I hope today is a better day for you and we all understand where you're coming from. I hope you have some answers soon and Deanna gave you some very good info and my onc has also said the same re comparing MRI and CT scans. Praying you're out of the hospital soon.
Karz72, I'm glad you enjoyed some good company, and yes the fear of that monster we can't run away from is a good way of describing it. I have to say I have myself a good cry every now and again.
Cathy, sorry to hear you had some complications with chemo but glad that you're doing better and noticing an improvement in how you're feeling.
Deanna, thanks for the info on the t-shirt, there's only 3 days left to order. About our humidity it's another scorcher here today! Just came in from watching dh do some yard work and I feel tired and achy.
Hugs to all, Annie
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good afternoon friends. Thanks for all the encouragement. I am so ready to be on n the other side again. To be the one giving encouragement not then one needing it. But i guess that's why we are such a close group.
I usually gets ct and bone scans every 3 months. And a mri every 6 months. they said one sees bones better and one sees soft tissues better but I cant remember which was which. about 4 months ago I had my first pet scan (after mo retired and I got my new mo). Friday They did a ct in the er looking for kidney stones. I knew it wasn't that but apparently is procedure. Mo did mri both to look for cord compression from new pain ( always worse pain when I am doubled up vomiting for hours so I wasn't worried ) and check for progression at the same time since calcium was so high . They do have other MRIs to compare them to. He said medicare wouldn't cover another pet scan so soon unless MRI or ct showed probable progression. Radiologist finally read MRI and showed no cord compression but several new compression fractures and a couple active or hot spots. Now mo has ordered the pet to be done tomorrow. I am a little worried about so much radiation in such short time. ( i also had a chest xray Friday to be sure the tube they put in was placed correctly ). He said we will discuss tx changes and options next week in the office based on whatever pet scan shows. Previous office he said lbrance and femara would probably be the next tx when ready
Hope that long mumbo jumbo wasn't to confusing. Still getting to know my new mo and certainly don't completely trust him yet. So I appreciate the concerns y'all brought up. They are still waiting on urine and blood cultures to grow. But for now they are still calling it another severe uti probably brought on with my under active thyroid. I had no idea the two were related. Remember we've been increasing synthroid for awhile now and just recently got rid of my migraines once it got back to almost normal range.
Dr said hopefully go home tomorrow. Would like another day of IV antibiotics - rocephin. Sorry for the long rambling post.
Hugs all around and hopefully can get back to individual responses soon.
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Hi Patty,
My apologies for posting here, but I read about your hospitalization and wanted to wish you well. Being in the hospital can be miserable, but it is necessary at times. As far as radiation exposure, it is something we all think about, but a necessary evil. During the 5 weeks that I had a chest tube, after my pneumothorax, I had at least 2-3 chest x-Rays a week as it was the only way to see if my lung was re-inflating so they could decide if it was safe to remove the chest tube. It was truly a necessary evil. Anyway, please take care and hope to see you on the mend soon and up and running with a new tx plan.
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Patty, glad to see you are feeling better! Hope you get home tomorrow as planned, we always feel better when we are at home! One of the things that drew me to this group is the genuine concern and support that you all have for each other. Only people going through this can truly understand. I have learned so much in the short timeI have been here.
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So glad to see you're starting to feel better, Patty! And it does sound like your new mo is being very thorough, which is good.
I had read somewhere that it helps to detox after scans with epsom salt baths, so that's one thing I do. Chlorophyll (in greens) and the supplement Milk Thistle are also often mentioned as good for helping to detox from radiation. As Caryn said, it's a necessary evil right now, but the baths (or a sauna if you have access to one) will help get that stuff out of your system quicker. Here's an article about detoxing from radiation. You can Google others with similar recommendations. http://cancercompassalternateroute.com/detox-2/the...
Lynwood, you are so right about the understanding here. I was saying something to my hubby a couple of nights ago, and I used a couple of common terms we use here all the time, and he looked at me like I was speaking a foreign language before asking me what they mean. It was a real eye opener for me in terms of the knowledge gap between us and even the people who live with us and care most about us. So yes, no one gets what we're dealing with or even some of our lingo the way our bone mets sisters do!
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Hope, I HIGHLY recommend City of Hope if you can get in. Dr. Jim Waisman is a BC God! I have see him keep women alive who you would think should not be alive.
Although I know there are other good doctors in other places. This is only my experience.
A friend of mine with a different type of cancer just switched from Cedars to COH because of the cutting edge, research based philosophy, along with the warm and informative patient care.
Let me know if I can help in any way.
Stefanie
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Hey, Patty! How are you feeling tonight? Much better I hope! I don't know if you had that CT Scan yet, but one thing I thought of after I'd written earlier -- and you probably already know this -- but since you are having a lot of scans, be sure to ask them to protect your thyroid. That's one thing I've read can be a concern with doing frequent scans -- zapping your thyroid is putting you at risk for potential thyroid issues on down the road. I always ask them to shield my thyroid since I had RT back in 2008, as well as thyroid surgery many years ago, and most RT techs are very considerate about doing that if you ask them. Just something I thought might be worth mentioning...
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didnt know that. Thanks Deanna.
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Patty we are all waiting for your quick return home. Isn't it interesting that you had to be at the Hosp, to get the Pet-Ct done? It's about time, of course a Pet will give you a more thorough look. Everything that is lit up will show the lesions. My daughter's Pet was like a Christmas tree!
Deanna very good advice. I also know of someone that had damage to her vocal cords due to radiation. But when my daughter or anyone for that matter needs to find out what is going on in the whole body scans, if you cover up with one of those heavy guards how can the picture of the area be clear?
You guys are all great. True heroines.
Should I kinda insist that some type of baseline be done b4 she starts on Kadcyla this thursday? Even the tumor markers Onco is hesitant to do, but I will ask again, the last one was 2 months ago. I think she might not wanna know...she says it was not accurate, maybe not in itself BUT i like to know stuff. I am the type that goes out to the patio at night if hear noise! Yes it's crazy but for me is more crazy to wonder...
God bless all of you(us)
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Patty - holding your hand in spirit my friend. Your generosity towards all of us is priceless. Now it's your turn to receive.
Deanna - hope your throat is better. Are your scans scheduled yet?
Mommallthetime - Hmm - I think you are a heroine as well! Sending you and Dani good vibes.
Dune - how are you doing?
Romansma - is your pain any better?
Myra, Annie, Jobur, Cristina, Terre, Kartz, Cathy, Xavo, Lynwood, Stefanie and all others I missed - just saying hi
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momalthetime, they can protect just your thyroid with a neck only shield that's intended for that purpose. It doesn't obstruct anything else.
Admittedl, TMs are not always accurate, but they are one more tool for spotting a change either way in the activity level of our bc. Doing them with the caveat that they are not always accurate appeals to me more than totally ignoring them b'cuz they might not be accurate. They're just part of an overall picture that can help spot trends. And, yes, I would think a baseline CA27-29 would be helpful. Both of my oncs order them with the caveat about accuracy and normal fluctuations. (Without trying to go back to your previous posts, I assume Dani had a recent scan to determine progression, right?)
So sorry that you're dealing with this. Seeing a child go through this has got to be infinitely harder than doing it ourselves.
Linda, I'm scheduled to have a CT & a bone scan on 7/31. And yes, I still have that weird sore throat.
How's everyone else doing?
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LindaE54, nice touch. I curtsey in front of you guys!
Deanna, you made me chuckle. I have to write down your paragraph I should use just such wording, we are in total agreement there. I shall be using it when I speak w Onco again prob very shortly. Thanks so much. You guys direct me always. Here i got the ball running re-Brain MRI back when, to begin with, Onco didn't think it necessary, but I was told to go for it, and lo and behold there were mets there too. As we are writing this right now, Onco from major Center is spkg w Dani's Onco so we'll say if they come to an agreement and to go ahead with Kadcyla or what...
Yes, she had some progression, at this point we only know in the skull area bcs it was a Brain MRI, neuro would have considered surgery, but it's not pushing for it at this point. The concerning part is where the progression is at, at the frontal area and the encroachment to soft tissues both very close to the Dura.
And I shall ask her to shield the area.
I posed the question, maybe we could do some testing on the tumor to see if a/t changed again, due to progression, they will discuss it and let me know if and what. That's what I did today, believe it or not, reading and reading, to see if there is anything i should know, in a diff. thread someone mentioned that sometimes they do testing like AR testing, ever heard??
So sorry, Deanna you are not feeling well. We need you up and around, so be strong.
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Thinking of you & Dani Momallthetime, you're an awesome mom & remind me so much of my mom :-) Can't keep a mothers love down!
I downloaded the One Republic album Native last night & listening to it I thought this song appropriate for this thread
It's written for a cystic fibrosis sufferer, but the chorus could be for us
"I, I did it all
I, I did it all
I owned every second that this world could give
I saw so many places, the things that I did
With every broken bone, I swear I lived"0 -
That's beautiful Kartz. Thank you for posting.
I'm having a hard time with pain these past few days. I think it's time to put my feet up and stay quiet for a few hours. This is unrelated to the thread and trivial, but does anybody have any advice for boils other than warm compresses, hot baths and antibiotic cream? They are driving me nuts and keep coming back. I will ask my Onc for antibiotics on Thursday if all else fails.
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Linda, sorry that you are bothered by some boils. It's a kind of infection and a sign of a weakened immune system. At least in principle, drink as much water as you could, rest a lot. If you have more than one boil, you certainly should see your doctor for medication.
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