Bone Mets Thread
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LindaE- I have a golf ball sized lump on my butt and a very large bruise, but sciatica is better. My nurse told me this was my 52nd injection on that side and I have a lot of scar tissue built up from all the shots. No wonder it was hard for her to give me the shot. So no more shots on the left side, they will always be on the right.
Annie, I'm getting a Salted Caramel Mocha today. I know you like those. If I keep this up at Starbucks, I may as well get a job there.
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Wendy & Chelle, I too want to chime in here. I haven't told many people & didn't post it on facebook or my blog, because I didn't want that "pity face" or the "pity visit" that Terre talks about. It does seem to get easier with time, but be assured there are many ups & downs.
I have a couple of good friends that I can share things with, but really it's this thread that helps me on a day to day basis, because the only people who really get it are the ones who are living it. Post when you're down, post when you're happy!
Thanks everyone for your cheering, it really helps. It seems surreal that only 2 or 3 weeks ago I was so bummed out because the onc told me the tumors were more prominent. Cheers, Dee
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On the Canadian breast cancer stage IV Facebook page I read the most ridiculous thing I've heard in a while. Someone posted that she had a lump & was very worried that it was BC. When she posted later that it wasn't, her friend posted that it was wonderful (it is) and that it was Karma that she didn't have BC.
What?? Seriously? I have bad karma? That's what causes BC? Ok, well I guess we know now.... all of us here are just bad people, we deserve BC. Honestly, I can't believe what people say sometimes. Ok, rant over. Dee
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Hello to all,
Just got home from an overnight stay at my best friend's. My eldest daughter came with me and we had such a nice time. Dinner out, a movie and we all laid in bed and talked til 1am, so much fun! I cherish moments like that, simple yet so rewarding!
Terre, your post was so well written! You just really have a way with words and what you wrote really helped me as well. Thank you for that.
Deanna, thank you for the article, my mom was on dexamethasone for her brain cancer. There's so much valuable information here!
Cristina, how nice to have some extra cuddle time with your 3 year old, so glad you got to do it and are enjoying the beautiful day.
Lindalou, I think I'm a Starbucks junky, my daughters got me addicted. But oh that Salted Caramel Mocha with that whip cream drizzled in caramel and little bits of sea salt, heavenly! Probably not helping with my weight gain, need some will power to stay away.
Dee, I knew deep down that when they said your mets were more prominent that it was not so, because I had the exact experience as you. Finished rads in December and had bone scan in January. I even called my then onc and said I should not have this scan, he insisted! Called rad onc and he agreed but didn't want to butt heads with my arrogant MO so off I go for the scan. Lesson learned, I will always follow my gut. Report comes back that mets are more prominent and there is progression. My rad onc was right on top of it and said this scan cannot be taken seriously, there's still too much inflammation from the rads. This really upset me because now I had doubt and felt worried for 3 months til my CT showed that all mets were actually healing and there was regression. Ugh the frustration! I'm beyond thrilled to hear you are stable!
Really hoping we hear from Romansma soon, thinking of her always!
Hugs to all you beautiful ladies, Annie
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Terre
I also read everything but do not post too much but your words of wisdom are right on and thank
you for posting that . I must remember to read it again and again
Rosieo
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Hello everyone I read the posts all the time and it always lifts me up to know there's a group of people that get it. LindaE thank you for remembering about my surgery. Tomorrow I'm meeting at the hospital for "pre-op" procedures. I don't know what that means but I'm bringing with me the results from my last blood work from yesterday at the onc because my hemoglobin is low and also I'm going to make sure their notes say to us my power port for IV because my veins are too thin and at my last surgery I had IV infiltration and my right hand was permanently injured. So yeah I'm a little nervous but at the same time I trust my God and my doctor. Thank you for your prayers.
A
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Terre-thanks for those words, like Chelle and Wendy I was first dx stage iv in June.
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Thanks Annie, I knew in my heart that you were right too, but when the onc tells you that it's progression, I just felt like someone had burst my huge bubble. The whole time we were on vacation it was in the back of my mind "is this the last vacation?" "am I not going to be able to make the trip across Canada next year?" Sometimes I think the onc's don't want to get your hopes up.
About Deanna's link re; dexamethasone, my friend Susan with stage IV colon cancer is taking that & one of the side effects is muscle weakness. I remember this from when I had chemo & was on dex. I thought it was just chemo kicking my butt, but apparently a well known SE.
Good luck tomorrow Auroaya, thinking good thoughts for you.
Romansma, please check in, we miss you!!
Off to help DH build forms for the new carport.... see you later, Cheers, Dee
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Auroaya - good luck with the surgery. Sending good thoughts your way.
Welcome Ellelou to the club no one wants to be in.
Dee - Karma indeed. As a practicing Buddhist, I can assure you that the person posting about karma knows bugger all about it. What an amazingly stupid thing to say. There is a thread here somewhere about stupid things people say. My personal favourite is when people act like I'm lying because I still have my hair. If I REALLY had cancer, I wouldn't have any hair! Morons.
Lindalou - ouch ouch ouch. Glad it's getting better.
Myra, sorry to hear about the BF. Had the same happen when I was dx Stage I. All for the best in the long run, but at the time it was damn hurtful. Sending you good thoughts.
Annie - sounds like a fun night.
Glad what I wrote helped a bit. Sometimes I hesitate to post that kind of stuff, because I don't want to come across as preaching or in any way "better than you". Trust me, I have days when none of the tricks work and I'm just gloomy. However, the spring flowers are blooming (love the daffs and tulips) and baby lambs and calves are all over the place. My cousin and his wife from the US will be here Saturday (tomorrow). Can't wait, but I was kind of mentally off a week, so I haven't really done the cleaning and prep that I planned to do. Oh well.
sending hugs to all,
Terre
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Lindae54, thank you for the info, I will continue to be extra careful knowing that! Lindalou I am definitely there for a coffee date! Aurora, you are in my prayers,I feel good about your decision to do this surgery. I think it is the right move. You are very courageous, I admire that! Terre, I take great comfort in your posts! Wendy, heck yes we got this! Cjanet hold on to your little guy and never let go! Enjoy your day ladies! I love you all
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A best of luck with your surgery! Hope to hear from you soon.
Dee - my father was xtremely sick in the ICU literally hrs away of dying, we were just sitting around him, a volunteer passed by and with a big smile told us "Oh he looks so good!", hmm we almost fainted, my mom was there, it was not a pretty picture! And so it goes. A neighbor of mine saw my daughter and was going on and on how skinny she is, the first time I let it go, the second, but as she was going on, I said enough, if you see a fat person would you keep telling her how fat she is, we are all different blah blah, (of course she doesn't know of my daughter's status, no one does)But, nonetheless, people do have to learn they DON'T ALWAYS have to opiniate.
Terre, enjoy your family
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Ellen, welcome!
Terre, like your wisdom on MBC mentality so very much!
Lynnwood, meant to ask you if your work days manageable?
Dee, congratulations on the stable news!
Deanna, belated congrats on the turnaround going down TM!
All, have a comfortable and restful night!
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Aurora, wishing you all the best with your pre-op procedures tomorrow and praying for everything to go smoothly for your surgery.
Dee, people say the darnedest things. I guess I'd have to say I wonder what terrible thing I did to deserve this. I remember someone saying to me once you will be blessed because you're always helping people. Well I've been blessed with MS and MBC. Of course I don't feel that way just saying it really comes down to "shit happens", it's nothing we did wrong and sometimes we've done everything right. That was a silly comment for her to make!
Momallthetime, I sometimes wish people would use the 10 second rule before they speak.
Xavo, nice to see you, how have you been?
Hugs to all, Annie
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Lynne, sorry about your husband, but am glad to hear he got treatment right away.
I decided to try Quadramet to bring down my cancer load as my RO says. It is known to lower WBC counts, but after 8 weeks most recover on their own. MO wasn't crazy about my decision, but once I told her it was what I wanted to try she seemed ok with it. She want me to take affinitor & aromison when I can.
I have done fentanyl patches for 2 yrs now, my life saver. I take senokot tablets every night, that helps keep me regular, along with Metamucil.
I had been on Palbociclib for a year, now that I have been off it a few months I feel so much better & my hair is growing back. Sue
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Xavo, thanks for asking about work! I have been back for a week now, and so far so good! I am tired but it's a good tired. Pain has been manageable. I am blessed that all my coworkers are constantly offering help if needed. Working for me is a mental boost, I feel more like I have my old life back.
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Ellalou so you are also new to this ....I'm sorry how are you now? Big hugs:)
Dee I think that sometimes as well that Oncologist try and keep,it a little too real sometimes. I'm all about the possibilities and hope so you can imagine what my oncologist appointments are like..lol. You were just moving huge plants in your garden you have many more holidays ahead of you. 😉
Aurora I will be thinking of you today and sending all my vibe power that all will be well.☺️
Terre I get the hair thing all the time lol. Or you look to healthy...is it real cancer? Really? Enjoy you visitors and the lovely spring.
So today I'm working for Election BC getting political in my old age. Looking forward to meeting some new people and not thinking cancer stuff for a few hours. Have a wonderful day ladies sorry for those I missed I'm thinking of you all.
Hugs Wendy
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Good morning all,
Sue - Never heard of Quadramed. Hope it works well for you. I will research it but if you have info, I would appreciate it.
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Morning ladies.
Wouldn't it be wonderful if we could meet up? I live in NJ so if anyone is in the area or even lives somewhat close by I'd be willing to have people over my house. I'm feeling kind of lonely for female companionship, just a girls' night out. I really need to touch base with my friends. I am going to a friend's sons bday party on Sunday but that's going to be busy and crazy, no real time for girl bonding.
I have a headache but now drinking my coffee so it should help. Pain has been more manageable in the past few days. I'm onto my second full cycle of Ibrance. Doing it weird. Alternating 100 mg with 75 mg every other day. I get a blood test next Wed and if I'm good in terms of WBC I think we'll leave me to finish the rounds at 100 mg. And keep it to 100 mg. If I'm not so good, I will go to 75 mg for the rest of the cycle.
Lynne- glad work is going well for you. I too work, full time. I use my "ESL" time for all my doctor appointments and scans. I usually take about 2 days a month or so.
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Good morning all!
Cristina, I'm glad you're posting about your experience on Ibrance, I hope it gets approved here soon. The trial is closed for it, so that makes me somewhat hopeful. Hope your headache eases.
Lynne, anything that takes your mind away from cancer is a good thing, and if you've got supportive co-workers then it's even better.
Wendy, thanks for the words of wisdom. In my heart I knew that it wasn't my last vacation, but your mind sometimes goes to dark places when the onc's are so matter of fact about you not doing well. In fact I feel so good other than some back pain, but I did when my first diagnosis came & again when stage IV, I don't think I'd ever felt better in my life. Irony.
I'm off early for my pamidronate infusion. DH is taking me to one of our favorite restaurants for lunch in the new car! So hoping to have a bit of fun before I feel like crap for Thanksgiving weekend (here in Canada it's TG)
Hope everyone has a painfree day. Hugs everyone, Cheers, Dee
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Sue2009, My RO just mentioned Quadramet to me last week, and my MO vetoed it. The RO nurse gave me a brochure about the risks involved. I wish you the best, and let us know how you do on it. I hope it gives you much pain relief. They have to wear a hazmat suit type of clothing to administer it because of the radiation?
Lynnwood, So glad you are doing well and that your coworkers are supportive.
To all Canadian ladies, enjoy your Thanksgiving and good luck with your infusion Dee.
Wishing all a good weekend.
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Hi all
This thread is so busy! I find that wonderful but overwhelming. I am having a hard time keeping it all straight right now as I am in a brain fog. I am dealing with my first progression and get hopeless at times. I have this relationship with cake that it typically reminds me of the beauty in the world. I try to make a cake around each scan and this time my cake even failed.
I am set for radiation next week. Then I have to make a choice about treatment change. My Mo is talking about afinitor or 12 weeks of taxol. then faslodex. I asked him to look into Ibrance. I know this is my decision to make but I would love to hear from others how they make treatment decisions. I have been to Seattle for a second opinion in the past and think I will call to see if they wikl review my chart.
Hugs to all and I hope to be on the side of supporting others soon.
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Annie, thanks for asking. I have been worried somewhat about my TM and puzzled by a recurrence of mild pain on or in my ribs. My last CA 15-3 TM test (last month) showed a great deal of slowing down of dropping, although still dropping. In almost 8 weeks, it dropped only 10 point in comparison with the even and steady dropping rate of 10 points per week before. The mild pain on or in my ribs first appeared last year, in May. Then it subsided on its own in about two months (I did not know it's mets, of course, then, and went on a 40 some day trip to Europe in July still with pain in the right shoulder which appeared after the rib pain subsided ( I thought I slept in a wrong position). The shoulder pain subside also on its own in a few weeks and never came back. The rib pain seemed coming back now, but more obviously as rib pain. The first time I felt it I thought it was my stomach muscles' pain caused by a long walk. So, the two factors, slow down TM dropping and the recurrence of the rib pain worried me. I am afraid that Letrozole is becoming less effective on me. My onc did not show any worries when I saw him the last time. However, the rib pain did not recur until after I saw my onc. However again, the rib pain is mild enough to not take any medication. I just do not know what to think. I'll use Terre's wisdom while practicing wait to see game.
Lynnwood, so glad to know that your back to work actually reinforced your well being. You are a mirror of me. Every success you achieved is an encouragement for me!
Sue, keep us posted! I checked online about Quadramet after seeing your post. It seems to intend to have all the mets sites on the bone be radiated internally each time, while external radiation can only target one site a time. So it is for the patients who have too many mets sites to radiate. But one qualification for Quadramet treatment is the bone mets must be blastic (the bumpy lesions on the surface of the bones). I am interested, I will ask my onc about it. I believe I also have a huge tumor burden that I need to reduce.
Aurora, are you having surgery today? My best wishes!
All, have a nice Friday! (I noticed the leaves here are not yet colorful, but started to fall off from the trees already. I am afraid we would not have very much red leaves this year, very odd!)
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Wendy--I started Ibrance and Femara almost immediately after my dx, so I am just starting my 5th cycle. I have had three blood tests only-my WBC started at 11, dropped to 4, went back up to 7. I will do another one in about two weeks and I have my first scan on the 19th. A thorasic and lumbar MRI because I had 4 mets to the lumbar region in June. I have very little se's from the meds. I feel ok and yeah, I get all the comments--you look so good, etc.
Cristina--New Jersey is too far to meet up for coffee--darn!!!!
Ellen
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Wendy thank you for your well wishes. Xavo I did not have surgery today just a pre-op appointment filling out paper and getting blood drawn ( 7 tubes!)
My surgery is next Friday the 16th and I'm almost completely at peace I trust my doctor and I trust God so just at night my mind goes to those dark places but I pray and it subsides.
Aurora
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Hello to all,
Lynwood, I'm glad to hear that working gives you a mental boost and makes you feel like you have your old life back. I'm amazed at anyone who can do it!
Wendy3, good for you doing the BC election and nice for you to get your mind off of things.
Cristina, my friend's son just took a job in New Jersey, if I were ever to go with her I would definitely get in touch with you, would love a visit!
Dee, best of luck with the infusion. For some reason I did not react well to my last one and if it happens again my MO said we may need to switch to Xgeva. Strange after all this time for that to have happened.
Lindalou, thank you for the Thanksgiving wishes! We're celebrating ours tomorrow so it will be a Happy Turkey Day.
3-16-2011, best of luck with radiation next week and prayers for a successful treatment change, whatever you choose.
Xavo, not sure what to think of your rib pain other than maybe it's totally not cancer related, of course that is my wish for you. It's good that your tm's are still dropping, even if at a slower rate. It's so hard to make sense of things. One day I can be in extreme pain and then the next feel quite normal without having done anything different. My nurse always tells me you know we're getting older and some of your pain is probably that, to which I reply "who is getting old?".
Ellelou, so good to hear that you have very little se's from the meds. People always tell me I look so healthy and I always reply with I wish my inside matched my outside.
Hugs to all, Annie
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Away from here for a day and a half, and can't believe how many posts I have to catch up on, which I'll try to do later, but can't promise because this thread just keeps moving so fast!
I was at UCLA yesterday, and all I can say is, ladies if you don't have an onc who makes you feel positive and hopeful, find one! My UCLA onc is so awesome that way. I always feel so reassured when I leave there. It's always a long day, but so worth it.
Had my labs again locally this morning, and my white counts are back up to 1400 (vs. 900 on Monday), so Ibrance cycle #3 starts tonight. UCLA onc was totally satisfied that my TMs are where they are (she called them stable, even though they've dropped 10 pts), as she said it's not uncommon for them to go up for several months when you start Faslodex, possibly due to tumor flares.
Oh, I also asked her about cannabis oil, and she said... not enough studies to recommend it, but absolutely no problem if I wanted to use it, as it won't interfere with anything I'm on.
Hugs to all... hello and welcome to I think at least one new poster (sorry, I will absolutely go back and address you by name next time!)... and still very concerned about Hope and praying she just needed a break from BCO. Deanna
PS ~ Forgot to tell you all something kind of upsetting that happened yesterday. My adult height had always been 5'4". In recent years, my family has teased me about "shrinking," and maybe two years ago my son had measured me and I was 5' 3-1/2". So yesterday, @ UCLA they want to check my height, and it's 152 cm. or 5' 0". I was so sure it was a mistake, I asked them re-do it -- and it's the same. So today, I ask the lab assistant at my local onc's office, and it's exactly the same. So mets to my spine has decreased my height by a good 3"! WoW! I am so not happy about that!
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Ellalou have you heard of Chaga tea, it's a natural mushroom from the Pacific North West and it has been used for a long time to stimulate white blood cell growth and help with the immune system. I take a glass twice a day and so far my blood work has been good. Knock on wood...
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Deanna,
That's a significant loss of inches. Wow - do you think it's the mets in your spine? I'm really stunned...
I do hope everyone has a good weekend. I have two MRI's coming up, one on Monday for low back and hip and the second on Tuesday for upper back and shoulder. The scheduler was so kind he suggested back-to-back appointments instead of 3 total hours in that machine. Although I've spent much longer time in a long metal tube before, but I end up in a different part of the world as my reward.
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Deanna - Good news all around! except for those inches.
Dee - I hope your infusion went well and happy Thanksgiving to you and all Canadians.
Good luck to all having tests and rads. Wishing you all good results and pain relief.
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Amy, I was (am) stunned, too! My dexa scans have been in the osteopenic range for years -- way before my bc dx. But I had once read and believed osteopenia was a subclinical category created by drug companies to push more meds -- not something to be overly concerned about. Plus I had the hip replacement and rod in my femur for pathological fractures, but I'm not lopsided, so not sure that's a factor. I know I do look and feel hunched over on days when I'm in pain. But I was (am) in disbelief that I've actually lost that much height!
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