Bone Mets Thread
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Hi All!! Nice day out today, but traffic was crazy & the police were out in full force because it's a holiday weekend here, the start of the summer.
KCM, I hope you're feeling better, that flooding looks just awful, not religious, but love the "Noah called". There are days when I wish we would get a bit more rain, but that's crazy! Feel better....
Deanna, sorry your numbers are out of whack, I hope they can figure out that this isn't anything serious. Totally hate the blindside.
I'm so tired tonight I can't even read everyone's posts, but hope everyone has a good night. My little blue friend (sleeping pill) has kicked in, G'nite all, Dee
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Deanna, sorry you had weird test results. My TMs have been a roller coaster too. I am going for bloodwork today, hopefully it is down on the Ibrance last time one was up and one was down. It seems like I have bloodwork constantly. I wish it was every 3 mos. Don't put too much stock in Dr. MD and the ALT results, have a nice glass of wine, that will bring those numbers up😃. As for sleeping, has anyone tried sleeping or healing meditations? Works like a charm for me. Put those earphones in and 10 minutes later, I am asleep!
Have a good day all, time to drink water, my one poor sad vein. And they wonder why my BP is up when I'm there.
Myra.
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Deanna - sorry about your blood results and I hope you were still able to have a good night's sleep. Thinking of you.Good luck with your vein Myra.
Linda
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Oh Myra. I, too, have a lone good vein. For that reason, I am actually glad to have the port in.
Deanna, I know you hate your TMs. I'm hating them with you. Hopefully, your onc gets right on it and changes your treatment. I expect to see my numbers improve since I started the new treatment. I just need to stop eating sweets.
I think I might be getting sleepy. See you later!
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Hi All...have tried to get an idea of how everyone's doing...thinking of you all. Dune...glad you got thru chemo without a big hitch (how silly does that sound!), and got goldfish crackers (my grandkids go thtu gallons!).
Yikes, Kiwi...horrible weather...hope the water's receded and there is some normalcy...I only saw 4 adorable kittens. Sure wish you didn't have to work...or at least fly when you're sick.
Deanna...my onc is on the same page w/your sister...immunotherapy...we gotta stay alive, sisters...a cure is coming!!!! Sorry you aren't sleeping and TM's didn't help that much :-(. I just keep hearing my oncs voice-they will zigzag...but I know it's so unsettling. I'm hoping they jump down as fast as they jumped up! Also...ALT is a biggie in the liver mets world & lower is better...so I'm thinking you shouldn't worry about that level...it sounds like your liver is good.
Just hoping & praying for all...that the weekend finds you feeling good.
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Lovey post, RonnyKay. Well said. Should I be lazy and say "what she said"?
I'm on the mend, the weather is better, and there are six kittens in the puddle. Hoping to get more cute shots soon. Never seem to have the camera with me when they're awake.
Sending hugs to all,
Terre
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Kiwi...XOXO
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Dee, I've been very frustrated at times with inconsistencies in radiology reports. Example:
1st CT in Aug '14 "liver is unremarkable with no focal lesions"
2nd CT in Jan '15 "liver demonstrates a small 3 mm lesion unchanged from the previous exam." WTH?
Have seen a lot of this when looking over my reports. The summary will say no new mets, but mention uptake in vertebrae that were never mentioned previously. Some of this seems to be due to the differences in what each individual radiologist decides to put in the report rather than actual physical changes. Coming from the tech world, it drives me nuts that the written reports are not standardized in any way. My last 2 PETs have been read by the same person and it seems to help with the consistency, but now I just hope he isn't missing something!
In any case, I hope that new spot over the eye isn't cancer at all and just something the previous radiologist did not see fit to report. Hope you get some good, conclusive answers when you meet with your docs.
Deanna, My AST has always been outside of the normal low range, so I have visited Dr. Google repeatedly to see what this might mean. I have the same impression as RonnieKay for all the liver function tests (total billi, AST, ALT), lower is better! You seem to have found the one study someone did (I found and read it too) that said it was a bad indicator, so I hope you will put your mind to rest about that at least.
KCM, Please be VERY careful if you are still feeling lightheaded/dizzy. A very dear friend of ours just took a terrible fall due to feeling dizzy one morning and is now in hospital with a bunch of broken bones! It only takes a second to lose your balance and fall, so please do be careful. Yikes, that is some awful flooding! Hope it's over.
LindaE, Sorry about the nurse and kidney issues, but glad to hear your pain is back in control. Did you get the results of your bone scan yet? If so, hope they were good.
Myra, I loved your comment " try to focus on one positive thing today" Good advice, I'll take it!
You all are sure making me appreciate my so far/so good veins!
I tried generic Ambien a couple times this week to help me sleep. First night and morning were good. 2nd time, got so dizzy when I got up I had to lay back down or faint. Also got a new rx for nausea this week, not sure if it helped the nausea much, but it did put me right to sleep! I never thought I'd be experimenting with drugs at this advanced age, ha ha!
Hope you all have a good day!
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RonnyKay and jobur -- thank you! I hadn't looked beyond that one pretty upsetting article, jobur, and am so grateful to know that you have! I very occasionally have some dandelion tea, which is suppose to be a good liver cleanser (but tastes awful), and I've wondered if that could be a factor, as well as all the curcumin, mushroom extract, beets, avocados, grapefruit and other good things I eat that are liver cleansing foods. Hopefully, you're both right that a low reading isn't a big deal.
jobur, sorry you had that problem w/Ambien. It never ceases to amaze me how powerful a tiny little pill can be -- really food for thought (no pun intended). And so sorry you're dealing with nausea. Hope that new med does the trick!
I am also blown away by the mind-body connection. A few days ago, I felt great, as long as I don't overdo. Yesterday, I felt like I was falling apart -- everything hurt and I was convincing myself I must have brain mets and that my spine is on the verge of disintegrating. I literally had more pain than I have in months -- probably due more to the fact that it was raining (a rarity here in the desert) and I wore sneakers all day rather than flipflops. But that looming TM number is really doing a number on my head!!!
Myra, hope your blood work comes back great!
Terre, glad you're feeling better, but do be mindful about any lingering dizziness!
Hope you can all make the weekend special! (((Hugs))) and thank you all for the words of support!
edited to fix a typo -- those drive me nuts
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OK Deanna, you will find this funny about TMs! Last time my CEA went up a few points and CA15 went down. This time my CEA went down and CA15 went up (I still think my onc does them too often!) So we live a roller coaster of numbers, look at it all with a grain of salt. BTW, all my other numbers went down considerably, most now in normal ranges
Enjoy all, Myra
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I just got back from my great niece's birthday party, at which I was fine, sweaty but fine. I'm sitting up in bed having a little trouble breathing now and then. I do have mets to the hilar region of the lungs. I'm hoping it is a bit of an anxiety attack and took some xanax to help it. I really hope this takes care of it. I must keep breathing. Sheesh.
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Jobur - No bone scan results yet. I have a CT scan next Saturday the 23rd and see my Onc on the 28th of May for results. I hope the CT results will be in. I had a lot of nausea on Tamoxifen and took ginger in pill form (OTC here). It helped me. Just a thought.Mind-body connection. I'm making a lot of exciting plans for the summer and focusing on positive things. I find myself giving cancer some time off, and it helps me mentally and physically. Not always easy to do, I admit.
Dune - Hope your breathing is better. I read on another thread that your lymph nodes are shrinking. Very good news!
Deanna - Amazing how our minds can plays tricks on us.
Hugs to all - Linda
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hello friends,
Of course, I have completely lost track of how you are all doing, individually. So, I apologize for the blanket well wishes to all.
Mind body connection, yes, it's a very strong tie. I get pre-scan hypochondria. All sorts of aches and pains that become more intense as the scan approaches. It reaches it's height after the scan, but before the results and then, mysteriously recedes once results are in. Actually, for me, the mind body connection is why I try to stay as positive as I can. Being optimistic won't cure my cancer, but it makes my life full and happy. My mind is definitely flipping bc off, even if my body won't be able to do so at some point.
Just one more month of school and I'm off to Alaska. F- you breast cancer
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Alright Caryn. Whatever we have to do to put cancer in its place. I hope I don't give it one second more time, and visiting these amazing places God has created is an excellent way to to do that.
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Having quite a lot of trouble with these bone mets and pain.
I think we all get pre-scan hypochondria! I am just having hypochondria in general. Every morning when I wake up there is a new pain in my back. This morning there was pain on mid-back on my spine and even a little bump. Of course in my head, I"m thinking, WTF, can cancer even spread this fast? I'm working on making a pain management appointment this week.
Still struggling w nausea which my onc says is definitely not due to Arimidex. I asked the nurse, but one of the side effects is nausea?? Nurse seems to feel it's more about my hormones being out of whack.
Deanna- I"m sorry about the tumor markers, mine had always been stable UNTIL I was diagosed w mets and now they are up in the 200s. Let's see what happens when I go to my onc in June. I also had a question: what brand of curcumin do you use? I had a lady on a FB metastatic BC board I'm now a member of say it helped her w pain!
I hope all you other ladies are feeling better and have a nice Sunday.
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Cristina - Hope you're feeling a bit better tonight. Very good idea to have an appt with a pain specialist. Since my pain is controlled, my mind and body feel much better. Hopefully, your system will get used to arimidex and the nausea will subside after a month or two. That's what happened to me when I was on Tamoxifen for approx. 5 months. Hang in there.
Caryn - you must be getting excited about your cruise! Enjoy!
Good night all. Linda
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Cristina, Just throwing this out there but have you altered the time you take it. Maybe take it at night instead of am, or vice versa?
Redroan
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Excited about my cruise? Beyond excited! I waterproofed my hiking and tennis shoes today, mentally created a packing list, printed out cruise documents and started checking the weather forecasts. But wait! I still have Open House, report cards, school wide art show, placement meetings for next year and a million other end of school year things to do. Although tiring, I embrace every minute of it and am grateful and privileged to be a teacher
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Christina,
Oncs always seem to think all our treatments have less se's than we do. I remember having nausea when I first started Arimidex and it did subside after a month or two. They tell me ginger candy is good for nausea, but I haven't found or tried it yet.
During the time before and after my dx last year, it seemed like everything I did put me in more pain. After a few months of treatment, it also got better. Hope it works that way for you too and you can get on a good pain med schedule in the meantime.
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Ohmygosh, Cristina... tell your onc to read the Arimidex website! It's right there in black & white -- the #2 SE after hot flashes! https://www.arimidex.com/about/side-effects.html?s... And by the way, I had such horrible nausea with Femara back in 2009, it actually led to a passing out episode. So I know first-hand it can happen, and shame on any onc who demeans our common sense by claiming it doesn't!
As far as curcumin, I really like this Life Extension one... http://www.lifeextension.com/Vitamins-Supplements/... They also make one that contains ginger, which I think might be to prevent nausea, which I've gotten with other brands, especially on an empty stomach. And my experience re. pain is that it absolutely helps -- probably not within the first few days, but once it kicks in, I can tell a significant increase in joint pain especially within just a day or two if I run out of it.
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hey Deanna. You didnt happen to say how you were feeling. Hopefully much better.
Feeling too tired tonight to take notes or remember what everyone has going on but I certainly always read and keep up with you wonderful ladies. Hugs all around
I had a pretty good day. My dh and ds's and I went to sonic and got some slushes and drove around out in the country for 2 hours today. The weather was great. The rain stopped just long enough for us. Lots of family talking and singing along with the radio. I don't get out of the house much cause riding in the car makes my back hurt more and walking very far is painful So today was a special day and I really enjoyed it. I didn't even take a nap today and am still awake. Amazing. Def something to say sbout mind and body.
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Good to hear Patty. I'm starting to have trouble being in the car for long too. My back and hips seem to be on fire. Deanna, sorry about the TMs. I've been in a little funk about mine increasing too. I've decided I need to sit back and wait to see if it continues before I panic. Easier said than done!
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hey hope. Praying lbrance is the answer for you. Good to see you :-)
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Just saying hi. Too tired to do the note taking thing. Hope you're doing better Dee and Deanna. Glad you had a nice day Patty! Dune - hope you're feeling better!
I'd agree with above - doctor's act like the SE's don't exist. I was really nauseated when I was doing radiation and started tamoxifin at the same time. Docs said it was "medically impossible". However, reading these boards, I saw the same SEs all over the place - along with the "cure", which was a bit of dark chocolate. I don't know why the docs act like it's not happening. Oh well.
Off to bed for me...
Hugs to all,
Terre
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Also popped in to say hi.
Loratadine (Claritin) has been helping when I have the Neupogen now. I think the combo of Neupogen and Zometa was too much for it, so I'm glad I only get the Zometa every 8 weeks.
My MO never acts like SEs don't exist. My RO, on the other hand, claimed he'd NEVER heard of a BC patient who had nausea from rads. I know it's a small % (maybe 1-2%) and generally in women with left-sided tumors - which I had. I saw from my skin reaction that I was getting the rads right over my stomach and right next to my esophagus. Ever hear of scatter, doc?
Leah
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Hello to all, just popping in to say hi since I've been away for a few days. It's the Victoria day long weekend here so been busy with dh working on our gardens. Temps got up into the high 80's so very hot and humid but I'll take it.
Patty so nice to hear from you and glad you had a nice day with the family. I truly cherish days spent with dh and the girls, even though they're 23 and 20, they still love hanging out with their parents, means alot to us.
Romansma I hear you about your back and hip feeling like they're on fire, same happens to me if I stand or sit too long, I hate it!
Caryn, what an exciting trip you have ahead of you, enjoy and hope we get to see some pictures.
Hope everyone else is feeling well today and wishing all a good start to the week.
Hugs, Annie
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Hi all,
Feeling a little better today. Still can't get in touch with pain management, left another message, let's hope they call back today!
Deanna, that is the exact brand of Curcumin I was researching. That kind of seals the deal for me, I will purchase on amazon.com. You're the second one to say it helps w pain.
Hope- I hope you start feeling better and the Ibrance helps keep the TMs down. I hate back and hip pain.
Hip pain is starting a little, I think clearly a SE of Arimidex, but I'm not going to let it get me down.
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happy Monday ladies. Hope y'all are having a great day. Hugs all around still to lazy to take notes to respond to all but y'all are def on my heart
Deanna - hope you are feeling great !
Cristina - sorry you are having hip pain today. Boo
Annie - glad to hear your adult dd still want to hang with you guys. Gives me hope. I keep thinking my ds's at 13 & 10 are over halfway tgru with their childhood. They will be off to college before long. Praying to see them both graduate high school.
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Hi, Patty ~ Yes, I'm fine. Over my panic. And so glad to know you're doing well too!
Hope and Annie, "on fire" is exactly how I would describe my back pain when it kicks in, which for me is mostly if I've been standing in the kitchen cooking for any length of time. Needless to say, our meals are greatly simplified these days!
For Hope and anyone else worried about an increase in TMs, this is, in part, what I heard back from my UCLA onc today in response to my slightly panicked message to her about my TMs... "...need to have a scan to document that something real is happening as tumor markers are not 100% accurate... Keep in mind this disease is like running a marathon, not a 200 m race. There will be ups and downs and there are many treatments available so not all is lost if the disease is growing again..."
Hi, Leah! That is so funny about your rad onc not admitting that RT can cause nausea. Mine did the same thing when I reported some shortness of breath in the second week of my 2009 RT. I still remember the wide-eyed, surprised look on her face -- like she was so shocked and insulted I would think that RT had anything to do with that. But all of my CT reports now clearly mention, "upper lobe volume loss with radiation fibrosis." I guess they don't spend much time on RT scatter in med school.0 -
I finally have a pain management appointment on Wed. This pain is so bad it's ridiculous. I'm ready for a fentanyl patch!! But ok, what scares me is that there is a new tender pain spot in my lower spine. So, now my cancer has spread already? I have no idea what's going on. I see my onc on June 3 or 4 for meeting, tumor markers and then to get my lupron/xgeva second set of shots. I worry that this cancer is now triple negative or Her 2+ and my onc is just going on the assumption of what it used to be 3 years ago. Also, started having pain in both hips. I'm almost 100% sure that is from the Arimidex.
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