Bone Mets Thread
Comments
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Sasha - For what it's worth, I'm an engineer / scientist and the mind/body thing has been scientifically proven and there are peer reviewed articles on it (such as in Nature and other scientific journals). So yes, she does need to get on board with it.
DLB - I re-read your post and it made me giggle again (I have a warped sense of humour). The reason I laughed was because of this goofy condition we have where we're happy to have a diagnosis such as a fractured femur or pelvis - at least it can be fixed and it's not the way we have to live forever. So it was an ironic laugh...like me being really happy I have arthritis. And I know that shake of the head, nothing more can be done look/reaction from the MO. Just soul-destroying.
Along the mind/body thing line - once I found an MO who is fighting with me, my entire attitude changed and I feel better physically and emotionally. So I'm focused on living instead of dying.
Good on those of us who didn't believe our own personal Dr Gloom & Doom MO.
Hugs to all,
Terre
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Any of you girls on AIs have boils? Doesn't seem to be in the SEs, but it's been a problem for me the past few months.Linda
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Deanna, I just returned home from a brief hospital stay......adrenal insufficiency. From all indications it all started gradually after starting Xgeva 4 months ago....extreme fatigue, shortness of breathless, lack of appetite, loss of weight. Cardiology ordered tests for a P. Embolism....neg. Finally when I had significant loss of ability to function cortisol level showed seriously low levels. More testing is on the way to look at ACTH etc. All the other contributing players...Pituitary, etc were cleared in a performance check. I am much better now thank goodness....but the very low cortisol levels are on routine watch. Deanna what concerns me is that so very many women who are taking Xgeva and symptomatic are never involved in a concerted effort to find out why. Not all have s/Es but Lots do and it should be identified and worked with. Time out...off soap box! Hope that any new Tx add-ons work out well for you Deanna! Pegg
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Linda I just started last week so far no boils but I do have bad skin so they might just pop up.
Pegg, I start Xgeva tomorrow I think. I definitely am taking a shot of some bone med tomorrow. Will let you guys know what when I remember LOL. But I will be on the lookout, I seem to get all the side effects.
I am still recovering from radiation to my bone met in my neck. All my hair in the back fell out and my neck is bright pink in the back. The hair loss sucks, the rad onc kind of minimized it.
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Terre, interesting what you said about the mind/body connection being scientifically proven. I see a woman that is part of my health care team who told me the same thing. When I was first diagnosed with MS the first neurologist I had was a real pessimist, told me my brain was shriveling as we speak (MS causes lesions on the brain and spinal cord) and that if I didn't do the treatment she recommended I would be in a wheelchair within a year or two. Well I was diagnosed in 1999 and I'm still walking, refused her treatment and her negativity and have never taken any of the steroids forced upon me. I turned to a holistic approach and have done extremely well. Any time I would see Dr. Doom and Gloom I would have a relapse, not kidding you it affected me that badly.
Peg, so sorry to hear of your hospital stay, glad you're feeling better. My onc has already moved my pamidronate infusions to every 2 months because of the risks of side effects. I had only had them for 7 months when she switched. I hope they can figure everything out for you and this doesn't happen again.
Cjanet, so sorry for what you're dealing with. And yes they do minimize the effects of radiation. When I had my sternum radiated I was worried about my esophagus. Rad onc said oh it'll be fine, the rads will barely reach your esophagus. Well it burned like crazy and one night in my sleep I started choking on acid that kept creeping up my esophagus, thought I was going to die, could not breathe. They gave me something for it and it settled down but took a month. Sending you healing energy and praying you feel well again very soon.
Hugs to all, Annie
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mom6 - glad you are home. Hospitals are a lonely place indeed.
Hope everyone had a fear Mother's Day. Looks like everyone has been pretty quiet on here.
Dune - how u doing ? Thinking of you.
I have had a horrible migraine and low back ache for the last few days. Been sleeping a lot. Feeling some better this am. Crazy hiw the migraine will put me in a quiet dark room laying down which then causes back pain from not moving. Too stiff. Ugh.
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Pegg, I'm so sorry to hear that Xgeva landed you in the hospital, but glad you're out now and doing better. It sounds like such a powerful drug; your experience makes me concerned about taking it at all! I remember when my UCLA onc first handed me info' about Xgeva, reading the SEs aloud to my DH, and thinking there were so many potentially serious ones. So have they taken you off it?
Christina, I hope you have a much better experience, since you're starting Xgeva today. Please keep us posted!
Terre, you are so funny, and, yes, only those of us here get the irony of being thrilled with a dx of arthritis or even a broken hip, LOL!
Linda, I've never heard of boils (plural? yuk!) from a lack of estrogen, but I can see how having mets would make us more prone to something like that -- which involves staph -- because our immune systems are occupied elsewhere. I've recently had a tiny (about the size of a nickle) patch of what I think is/was shingles on my upper arm. I was finally able to get rid of it with calendula cream, but at it's most inflamed, it was quite red and painful and made me fear a possible skin met until I Googled enough photos to be pretty sure it was "just a bit of shingles" (LOL, Terre).
Saw my local onc yesterday for a routine followup and finally broke down and asked him for something to help me sleep better. He vascillated for a few moments between Ativan and Xanax, and eventually wrote an RX for a minimal dose of the latter. After I got home, I read the potential SEs for both of those, and now I'm not sure I even want to take it and might just try taking more Melatonin. I didn't take the Xanax last night b'cuz I had to get DH to the airport very early this a.m., but I am so tired of being sleep deprived, I really need something!
Headed back to my onc's office for labs today, mostly to keep an eye on my TMs. I hadn't fasted yesterday and asked him to add thyroid and cholesterol to the mix, to minimize the blood draws. I can do without food, but I'm sure missing my matcha green tea this morning!
Have a good day, everyone!
Adding... Patty, we were writing at the same time. So sorry about the migraine and back ache. Sending you healing thoughts! Do you know about the pressure points at the base of your thumbs? Sometimes I have to press on those really hard for my son who also suffers from migraines. It's right in that soft spot to the inside of the base of the thumbs. You can Google migraine pressure points for illustrations. There are other points, but that one seems to help him.
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Well...Just like everyone else...I read every post ...but then when it's time to respond...My chemo brain doesn't allow me to remember all your names...but just remember I respect and love all of you and your comments are inspirational...
I have been off treatment for 3 weeks since my last great news I posted a ways back...Liesions have dispated on my liver...tm down from 436 to 200 and blood cts pretty normal...
So I go Thursday to start Havalon again..along with Felex....and my bone booster...I have to say I have enjoyed being NORMAL>>>> ha what ever that is...but in this disease...that's what I call it...I have been able to finish my landscaping and be around my grandboys alot more...
Mother's day was beautiful..spending it with my extended family and my daughter...
I have a bigger surprise happening today..that my daughter doesn't know yet my I am flying in her Dad for 2 weeks ...This is a long story...but something that we both need...We have been very good friends since we split 1998...And have become closer this last couple years just via phone...anyhow...she has NO idea he's coming today...so we are surprising her at work...around 1pm Idaho time...I love doing surprises..especially for my kids...
So Update later...Love you all Carla
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Carla, so nice to hear from you and glad you are feeling better. Great news that your lesions on your liver have dissipated! Sounds like you're enjoying some nice family time. Good luck with the surprise for your daughter. Nice that you've remained friends with her Dad. Let us know how it all turns out. Hugs, Annie
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Hi all,Carla - Great news! Hope you and your daughter are enjoying the surprise.
Deanna - Shingles? I hope not! And yes, it's plural, and of course near the private parts. TMI Here's hoping you can sleep well with whatever you decide to take.
Patty - Hope your migraine is now part of the past. They're horrible.
Pegg - glad you're home and feeling better. My kidney function has been acting up a bit with my pamidronate treatments and are closely monitored. These drugs are potent. You try to fix one thing and then other problems pop up. My calcium levels are moderately high most of the time and are reduced with pamidronate. I don't see the day they'll be moved to 2 or 3 months. My dosage was reduced 3 months ago, and I notice that's about when I started having much more pain. It's like being caught between the devil and the deep blue sea all the time.
Dune - thinking of you on your second week of new tx.
Terre - Are you feeling better?
Linda
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Hi all,
Doing better. Still dizzy and tired, but much better than before. May even go to work tomorrow!
Linda - yes, I have them too. Gross. Like giant pimples in odd spots. Have been treated for staph infection but apparently not the cause. They come and go; seem to be stress related a bit, so I think it may be hormonal a bit perhaps?
Hugs to all,
Terre
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dlb823-I use Xanax at night to sleep. I need my sleep too badly to not take it! It works well for me0 -
Totally off topic, but...here's recent shots of foster babies. Challenge is to see how many you see in the first picture.
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Terre, such an adorable picture! I'm going with 5 in the top picture, am I right?
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6 Kiwicatmom :-)
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Starbright, thanks for the encouragement re. the Xanax. I tried it last night, and I feel like a new woman today! First time I've slept through the night in months!
Carla, the surprise you were doing sounds awesome! Hoping you'll soon fill us in on how it all worked out. I'm also curious, did you get your bike ride? Hope so!
Terre, as someone else said, I'm more a dog-lover, but I'm sure enjoying the adorable kitty photos. They're a delightful distraction from our mbc issues!
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What cute cats! Love the spots on the tummies.
dlb823- It looks like you're having success with Xanax, but just wanted to mention Ambien, which is just for sleep, if for some reason Xanax it stops working. I took it while I had my bone pain before and after radiation and found it very helpful. Now I'm fine with melatonin, but I wouldn't hesitate to ask for more Ambien if the need comes up.
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terre. Love the pic. So adorable.
Deanna - glad you are sleeping better. A good nights rest makes for a totally different next day then no sleep. Hoping it continues to work well for you.
Hugs all around.
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Hi Ladies, Sorry I've been absent for a few days. I had a bone scan on Friday & got the results on Monday. Most of my tumors are shrinking which is great news but the tumor over my left eye is progressing? What tumor over my eye??? This is the first I've heard of this. I had one in my sternum, one in my spine, one in my right hip, one in my rib & one in my upper left arm. The report says it's progressing since the last scan 3 months ago.
I'm pretty bummed about the whole thing. Tomorrow is my anniversary of being told I'm stage 4. Great that I'm still here, but doesn't really feel like a celebration. Don't see the onco unitl the 25th.
Hope everyone is ok, I haven't caught up on the pages. I've been keeping to myself, puttering out in the garden trying to get my head straight with the news. best to all of you, Dee
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Dee - in a word, "Bugger". I am so sorry you're dealing with this. Sending hugs and love.
Deanna - glad you got sleep. And no worries about being a dog person! I try not to spam the site with kittens too often. I love dogs too; got to pet a border collie at the vet's office the other day and was the highlight of the day.
Karz - there are 6. One is rather buried.
It's nasty weather here; massive flooding, transport systems shut down, etc. So if you see that there's a state of disaster in Wellington (not likely but might make international news), all is well where we are. Which is at home. Everything for a reason - I was so determined to go to work today because I've been off for a week now with this stupid flu thing. Woke up at 3 and promptly fell down; it's back into my ears again and I'm so dizzy. So decided to stay home. Which is good. Major slip on the road to town wiped out the only highway into town and the rail tracks for the train I take to work. We're up on a hill, but looks like lakefront property. So I'm really glad I stayed home!
This is a shot from one of the major highways in Wellington. People who did make it to work in the city are now stranded. They have opened the library as a shelter for stranded people.
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Terre, that looks really scary! I'm glad you weren't out in it and possibly stranded. It sounds like your dizziness this morning was a blessing in disguise.
Dee, I'm so sorry about the news you got, but really... what is with important information like a lesion above your left eye never being mentioned?!?! And you're not the only one! Haven't there been at least 2 others here in recent months who got similar surprises? Dealing with mbc is hard enough when you get straight information! None of us needs to get mind boggling bombshells like that dropped on us! I'm sure you're still reeling.
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Well said, Deanna. I'm reeling from Dee's information - can't being to imagine how horrific to get such a surprise. Damn doctors.
Sending hugs,
Terre
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Dee, oh my goodness, I just don't understand this, I mean they surprised you with the met on your arm and as if that wasn't enough now this! Did you question them on it? Since they had neglected to tell me about the met on my arm I have became a real PIA (pain in the ass) patient. I ask them to read every line on my report and then say may I have a printed copy of that for myself please to add to my file. What are they planning to do about the one over your eye? Good news that the others are shrinking. I'm praying this is some kind of mistake, sending you hugs and healing.
Terre, what a disaster and glad you didn't have to be out in it but sad you're still feeling dizzy. I hope things improve soon! My initital guess was 6 kittens and then I thought 5, need to learn to follow my gut and stop second guessing 😁.
Hugs to all, Annie
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Dee, I guess I'll just state the obvious: how incredibly aggravating. Maybe you'll feel like calling your onc and asking more about it. Terre, do you frequently get this dizzy inner ear thing? Uck! Boils and shingles? Holy moly. I think I need to go back to sleep.
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Dee, I started with bone mets too numerous to count, worst in my left hip. I had no idea where all mine are..LOL, and I never knew it until I couldn't walk 16 years after original dx. I can certainly understand your surprise. My center has online results for you after the doctor releases them for you to read. Does yours have that? That way if you need to go somewhere else or traveling, you have some reports for other places to get somewhat of your health picture.
Terre, thank goodness you were not caught in that mess, away from home and sick! Everything happens for a reason.
Have a good day all, try to focus on one positive thing today. When my kids were young, at the dinner table we used to go around and tell one good thing that happened that. We managed to get everyone to have at least one, hopefully you can too! Myra.
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Dee - Aggravating to say the least. I hope you can get to the bottom of this before the 25th. It happened to me a few months ago, AND I was the one who picked it up on the report and immediately questioned my Onc in her office. It popped up as no significant difference on lesion... when nothing had ever been mentioned before on any imaging. Can't even begin to tell you how upset I was. Further testing showed arthritis. I'm a bit obsessed and go over everything with a fine tooth comb. (and I know I aggravate them but that's their problem). Very good news that other lesions are shrinking. You're in my thoughts Dee.Terre - good thing you're home! Take it easy.
I'm getting aggravated with my nurse. I followed up on Monday re the scheduling of my CT scan and they told me they were sending a note to my Onc to prescribe hydration meds because of moderate kidney failure (thanks to Aredia). Called my nurse yesterday, nothing received and said the internal mail must be slow - What the F? She is never on top of things and can't be switched to another one. My rant of the day. My TMs came down a bit, (both increased last month) so doesn't seem to be on an upward trend. My pain is very well controlled and feeling good lately.
Wishing you all a beautiful day!
Linda
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Thanks everyone for your posts, they help alot. I'm not going to call the onco before my appt. It's hard enough to get her to answer when I'm there. We have some online stuff here but not those reports, I can get a copy but I don't bother because I can't interpret them. DH & I are just trying to wait this one out til we go down to Victoria to meet with her. I will become the PIA patient, this is the second time I've had a tumor missed in the report. After my session with the onco, I will go to my PCP & we will go over the reports with a fine tooth comb, which I thought we did last time but didn't have any mention of a lesion there, but the medical asst at my Dr's office read the previous radiologist report & it does mention it slightly.
Today is the one year anniversary of my stage IV diagnosis & DH is taking me for a drive to our favourite restaurant. Not really a celebration so much as just trying to make the best of it, enjoying each other company & a beautiful lunch.
Thank you all, I love that I can come here & everyone supports everyone. I will come back & read everyone's posts tonight because I see several of you have other news. Cheers, Dee
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Glad you're doing something nice for yourself, Dee. And glad you're doing well, Linda!
The dizzies I have are because I had strep throat and tonsillitis and had to fly to Auckland when I was really sick. My ears plugged up and doc said my eardrum was about to burst. One ear still aches and is blocked, but doc said just treat with steam steam and more steam and try to get it to open up. So, it's an effect from the blocked ear. Better today, but still a bit off kilter!
On a happier note...Flooding has subsided a bit. Supposed to rain again later today so I'm home again. Not going anywhere! Someone put this on Facebook and I thought it was too funny not to share. Hopefully the religious reference doesn't offend anyone.
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Took a Xanax again last night. Slept great, but haven't felt like myself today -- just sort of down. Hoping I can sleep tonight without one because I don't like how I've felt today -- hard to get motivated or get anything done. Then right at 5:00, I got totally blindsided when my onc's office returned my call to tell me my CA27-29 was 140 this time (up from 90 less than 3 mos. ago). Not a happy girl tonight. Glad my DH is out of town until I can digest this and bounce back some. Oh, and a couple other readings are suddenly way off from normal, including one (ALT) that when I looked it up talked about very low readings (which mine is) being a good predictor of mortality. Great.
Adorable image, Terre. Glad the rain has stopped, and hope your ear continues to improve. The last thing any of us needs is a fall, so I don't like thinking about you being dizzy and off balance.
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Damn @ tumour markers. Just sucks and unfair. I'm hating this for you ladies.
Try 1/2 or 1/4 of a xanax and take it early in the evening. I end up with a xanax hangover if I take it after about 7:30 or 8 pm, and I can only do 1/2 at most or I have which I fondly call the xanax hangover. I get the same with Nyquil. Just down and dopey.
I'm typically a dizzy blonde, so no worries about me! Doing better today too, just a little dizzy.
Sending huge hugs,
Terre
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