Bone Mets Thread
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A question re: pain from bone mets - when I was diagnosed in December, I'd had an ache in my hip joint on & off for over a year, put it down to my uneven running stride as it only really flared up when I ran more than 15km.
The mets in my ribs & shoulder had started presenting as "muscular spasms" or cramps in my upper back that came & went, and then when I started chemo I felt like my ribs were breaking every time my daughter hugged me!
I used oxycontin for about a month & somewhere between my 2nd & 3rd ellence/cytoxan chemo I stopped taking it (couldn't handle the constipation anymore!) & found the pain pretty much gone.
I'm now in the middle of a course of 12 weekly taxol & am getting sharp pains - almost like I'm being stabbed with a pin - in my left butt cheek & left hip, & in my upper back. Same sites as before, so of course I'm imagining the worst!! But a very different pain. Has anyone experienced this? See doc on Tuesday for taxol number 6 & will raise it, but its a long time to wait...
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It's so cool that several of you are doing the Alaska cruise this year. I look forward to reading about it. I did it some time ago and would definitely do it again. We wanted to do the dog sled excursion but it got cancelled because of too few people. I wanted to snorkel, just to say I snorkeled in Alaska brrrr, but it was cancelled too. I did the helicopter to the glacier thing and highly recommend it. I had the best seat in the helicopter. I would love to do it again and would try to get the dog sled excursion booked again. I have a bazillion pictures from the trip, especially the Inside Passage, so keep learning that camera JustJean. I wish I had a better camera when I did that trip. Mine was a 3 megapixel, which was about lower middle range then. Otherwise, I would have had a lot of sale-able pictures, especially from the Inside Passage. You'll see!
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Karz72, I'll be starting Taxol Monday, and if I get a different kind of pain, I will choose to think of it as the cancer dying off. Yes! Take that cancer! This is what is known as payback. LOL. But that's just me in my circumstances.
Linda, those are so expensive. Make a long list of what you are experiencing before you get the scan. Then you can use what you are feeling as a guide to whether or not there is a recurrence. (Sorry, I had a lot more written but the computer wiped it out. Ugh.)
Dee, the left side of my head keeps sweating gobs of sweat. Pretty picture, huh? It might be a good symptom for me to note though for recurrence.
Port placement went fine I guess. Of course it hurts, and admittedly, I am very tired of hurting. I had a major flare this week, where I couldn't walk: the day before the stress test. hahahaha. I still had pain from my pubic bones to my knees along the inner edge of both thighs, but I was able to walk to take the test. It hurt still a little yesterday, so it really was a nasty flare.
Xgeva today. Plus pick up stuff for birds (for our vacation). Start chemo Monday. Pray I tolerate it well so that mom stops threatening to cancel the trip. OK? Thanks for thinking of me.
I hope you all have a nice day today.
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Dune, so happy port placement went well! Stress will give you pain any day. I know it does me, I just have to get upset or angry and every bone in my body hurts like heck and the hair on my head burns. Lovely picture, huh?
Karz, I had a similar presentation of bone mets. I taught spinning, and just thought I overdid with hip pain, muscle cramps. Did the PT route, massage etc. then one night in bed, I sneezed and caused a stress fracture. Agonizing pain and the rest is history. My bone mets spots do mostly feel like muscle cramps.
Well, have a happy, pain free day all. Myra.
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Thanks Dune & Myra, will try to stay positive & believe its the taxol attacking the cancer, just strange after a few months of being pain free.
Can't say life is boring with this diagnosis!! :-)
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hey ladies. wow so much going on here.
i tried taking a little break. just felt overwhelmed with all this sickness i have had. was thinking maybe if I wasnt looking on bco daily maybe i wouldnt be thinking about cancer all the time. well that didnt work. dang dx and being in and out of the hhospital so much has just left me feeling defeated. i miss you gals and your support and stories that let me know i am not walking this path alone. i also missed supporting all you guys. nothing like focusing on someone elses problem to realize you dont have it so bad after all. to tired to reply to all but thanks for all the support ladies.
carla. - ugh dang dont know what to say. i like the respite care idea someone had or even the weekend help you need.
dune - hang in there
deeanna - sorry to hear of your pain. chronic pain sucks indeed. the stable scan was a good sign. hoping maybe you just pulled something ??
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Sharon8 - I take aromasin and it has affected my sleep patterns. I have found that having a cup of Sleepytime Extra before I go to bed helps a lot.0 -
Patty - Welcome back! Good to hear from you.Myra - "hair on my head burns" - I get the picture. LOL
Karz72 - Life ain't boring with this diagnosis indeed. Hope you get that pain under control and have it checked.
Dune - Hope you get to on your trip. Thinking of you. A Pet scan here in a private clinic is 1/2 the price of in the US. But still a lot of money.
Wishing all a good day.
Linda
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I wanna know what that guy was doing in my boob. The port gets placed up near the shoulder, but I am icing halfway down my boob. LOL. Was he copping a feel from the inside out? Noooooooo. I did not say that!
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Welcome back Patty. Linda I will go on the trip. Unless I'm hospitalized or worse, I'm going.
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Sorry Peeps!! I have been busy just enjoying my good news that I got yesterday at the Doc's ....Here it goes...My liver tumors have dissipated...My tumor markers are down from 436 to 200....and my white counts are normal...yea isn't that awesome...I get a break from chemo till after Mother's day...So I'm going to enjoy ...anyone what to take me on there back sit for a ride this weekend...let me know ahead of time...I need time to plan...I sure would like too...to celebrate my GREAT NEWS!!! ItSgOOdTObEmE....!!!!!! Love you all...
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Carla, THAT'S WONDERFUL!!!!!!!!!!!!!!!!!!!!!! So HAPPY for you!!!!!!!!!
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That's fantastic news Carla!!!!!!!! I'm so happy for you. Unfortunately I gave up my bike about 7-8 years ago.
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Carla, great news, very happy for you!!
Patty - been thinking about you, wishing you continued healing.
Jean/Caryn/Hope - I'm sure your Alaska trips will be wonderful. We went two summers ago and it was the best trip ever! I did not do the helicopter on the glacier, but my sister did and she loved it! I'll have to look up where we went zip lining because you did not need strength, it was more like sitting in a toddler swing seat and then going really fast, really far.
Still working on my sleeping, had chemo on Tuesday, so that usually tires me out. Get to bed earlier and got up at 10:30am on Wed. and thurs. to go get the Nuepogen shots.
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WOW Carla - that's awesome! Very happy for you!Linda
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Great news! Happy for you!
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Carla. That's awesome news !
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Carla keep on smiling😍. Myra.
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Carla-that is the best news all day! If I had a motorcycle I would ride out there. Gave it up years ago after I broke my foot on a tree stump-probably a good thing I quit! Had a Honda Fat Cat which was basically a four wheeler with only two wheels.
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Carla - WOW! So happy for you!
ReadingMama - we are going to Juneau and Ketchikan and Skagway. Two weeks from right now I'll be in Alaska. Oh my. Yes!
My efforts to learn how to use the dSLR camera are not going well - my "chemo brain damage" has left me with extreme difficulty in learning new things. I've been working at it every day and the only thing I remember is that an aperture setting is how much light is going in the lens. I've read a book, watched a ton of videos, read the manual (!), had my son take me out, and this is all I've got. I have a one hour lesson lined up on Saturday with the local camera shop where I got the camera, and I'm getting together with a bco sister on Sunday who is into photography. Some of this stuff has GOT to start sticking, right??? ::: Frustrated :::
Saw my MO today. I knew it was going to be a tough appointment because I had to decide whether or not to fire her and seek another MO. We had a good heart to heart talk about things and I am happy to say that the result is that she's still my MO. I am thankful.
JJ
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Great news, Carla! About time! (I'm saying that tongue in cheek and in a really goofy nice way)
Welcome back Patty. You're loved and thought of whether you're here or not.
Dune - sending good thoughts your way.
I'm good...just exhausted and a bit brain dead, so hugs to everyone else.
Terre
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Woohoo Freebird! Nothing like tumors dissipating to clear the fog!! May good feelings and feeling good last a long time!
Sharon & Twofer...I had no clue I shouldn't be taking letrozole & citracal at the same time thru my first two dx. I took them both at bedtime for 4 years! With mets dx, after Navelbine was dropped & I picked up my letrozole, the pharmacist told me they fight for absorption, so to try to go about 4 hrs + between.
I also think the AI makes it harder to fall sleep..so I tried to switch to am, moving the time back 3 hours each day (pharmacist said to do it that way)...but I'm an old dog...couldn't figure out how to do all the meds around it. Sometimes I feel like a but case.
Cling...I won't be on a ship w/you...but anyone that wants to meet up in Seattle any time...I'd love it!
Deanna...chemo changed my salt register..but on AI..I can't get enough of it...hence 14 #s....sad face.
Wishing everyone pain free days...I know that's easy to say...but it's my prayer!
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Carla, honestly your good news made me so happy! It was time for things to turn around for you and I'm so glad they did!
Patty, it was so nice of you to check in, I think of you often and totally understand how you felt you needed a little time away, but know we are always here for you!
Hello to everyone else, hoping you're all feeling well.
Hugs, Annie
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Where is the info' coming from about not taking Letrozole and calcium together, and is it the same for Anastrazole and/or Aromasin? I looked up when/how to take Anastrazole, and there's no mention of any interactions. It just says it's okay to take with or without food.
RonnieKay, I was having sleep issues -- in spite of some natural things I do to help -- and figured out it was definitely the Anastrazole. If I take it too early in the day, my joint pain is noticeably more, so I try to remember to take it late afternoon/early evening, and that seems to work the best.
And yes, ugh -- I have also been gaining weight recently and actually feel it around my middle for the first time ever. I want to say, "Stupid Anastrazole!" -- but since it's keeping me alive, I guess I'll make friends with the extra pounds as the lesser of two evils.
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Hi Anne,
I just wrote a really long post, hit the wrong key and lost it. Welcome to the thread - sorry you're needing to be here but glad you're joining us.
I have a little scooting around thing I do that helps, but basically it was through trial and error. I'm sure others will have good info. I've also asked the techs if they have any ideas, which is part of how I got this bizarre routine I do that minimises my pain.
Sending hugs,
Terre
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Anne - Just wishing you a warm welcome on this thread. Don't have any tips other than perhaps increasing your pain meds before a scan or taking methocarbamol which is a muscle relaxant.Wishing you the best - Linda
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Welcome Anne, lovely group of women, if you have to be here. The pain I have from the PET scans are my shoulders for several days after from holding my arms over my head for 30 minutes. That's it.
Take care today all.....Myra.
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gm all. Thanks for the encouragement ladies. Feeling a little stronger today. The sun is shining. Hoping to go sit out in it when it warms up. Maybe read a book and let the sun hear my body and shine on my face. Nothing like sun for a mood changer
Hoping all is having a pain free day !
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Zometa infusion Thurs, plus Neupogen shot (neutrophils were too low for chemo, hence the shot).
Oh, my, achy bones. Achy bones.
Leah
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Welcome, Anne! So sorry you have reason to be here, but so glad you've come out of the shadows of lurking! I have no advice re. scan comfort, and fortunately haven't had that problem. But the talk about it made me remember that for many months prior to my re-dx, I would have pain and severe sensitivity lasting several days in my neck area -- right where the wash bowl hits it -- after a hair appt. At the time, I chalked it off to all kinds of things, but in retrospect, it was my un-dx'd bone mets. Just mentioning it here now in case the scenario rings a bell with anyone lurking and wondering about bone mets.
Getting back to the scans, I wonder if there are differences in the beds themselves? The techs at UCLA always position pillows under my knees and behind my head, but I wonder if some beds themselves are harder or more ergonomic than others? Do you all get pillows too?
So nice to see you, Patty, although you were never "away" in my heart or mind!
Dune, hope the bruising is settling down from your port surgery.
Happy weekend all!
Editing because Leah and I were posting at the same time... Leah... do you have Claritin there? Would it help with your bone pain? It's just about de riguer here for Neulasta shots.
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