Bone Mets Thread
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Hi Solala,
So sorry to hear that your scan wasn't good. I'm not an expert, but if they decide the Femara isn't keeping things in check, they'll likely switch you to a different AI. I'm sure others who've had this experience will come into the discussion on this, but basically my MO has said that I'll do Femara until it doesn't work anymore and I show progression, then we'll switch to another one. I believe they act in different ways (the AIs) because when I asked him if I could go back to Tamoxifin because of the Femara SEs, he was hesitant because he said the drugs work quite differently and I'm stable on Femara. He explained how each works and I honestly can't remember exactly, but it's about how the shut down the estrogen in the body. So don't give up hope - there are other options available that they can draw from.
Thanks all for the kind words. I think extreme stress triggered mine both times - Stage I and Stage IV. I'm feeling much better today. My boss agreed that I didn't have to fly to Auckland for a two hour meeting, so that helps a lot because it would have wiped out my whole day (up at 4 am, 90 min drive to the airport, 2 hours each way to fly because it's stinking Jetstar who wants you there an hour early or you lose your seat on the plane, etc.). So I'm feeling better since I'm not losing a day. Was just feeling totally overwhelmed last night. I'm working from home today and tomorrow, so no commute which helps a lot! I slept in until almost 7 this morning and that helped tremendously.
It's a beautiful sunny day here (that helps too - I get grump when it's cloudy all the time) and there are baby pukekos down the road. I may take a lunch break and go stalk them with the camera. That's been a six year long goal - to get a decent shot of a baby pukeko. They are basically fluff and legs.
We have baby thrushes just outside the back door; they're about 3 days old. And there are baby plovers in the paddock next door. We also have a frisky pheasant who's been chasing his girlfriend (wife? domestic partner?) around quite a bit so I think baby pheasants are in our future. 
Hugs to all and thanks again!
Terre
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solala, if I'm reading your previous posts correctly, it sounds like perhaps whatever is going on in the pelvis has been there all along -- just not realized due to insufficient imaging. So my first thought is.... is this truly progression, or just something that wasn't known about, but maybe isn't actually progressing? I'm also wondering, since mets was found in your lower leg, why didn't your onc recommend an MRI or scan sooner? Or was that your choice, not to have one?
Terre, glad you got out of that stressing trip! And love the little black fluff ball, although I'm not sure I know what a pukekos is.
And, Carla, I was also going to tell you how beautiful both of your photos are, but I don't see them now. Did you take them down? I know it can be tough to look at photos of ourselves pre-bc, but we all have to keep in mind that we're all getting older anyway, and that even without bc, we wouldn't look the same as we did 5 or more years ago. I used HRT for many years due to early menopause, because I was so concerned about aging, and it probably contributed to my bc. And now I realize that my family and friends love me even with my scars and wrinkles, and that's what really matters.
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That's a great point you've made to Solala, Deanna.
A pukeko is a bird: http://en.wikipedia.org/wiki/Pukeko They are rather comical; skinny long legs and huge toes and a bit of white fluffy feathers on their bum. The babies grow into their legs.
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Thank you all!
Deanna that sounds interesting. I'll discuss that further with my onc. About the leg story, the reason why there was no imagery earlier is stupidly because after so called being NED for 5 years I closed the chapter. I was told I didn't need to have scans anymore. So i was convinced the pain was due a musscle, nerve, whatever innocent thing until I couldn't bare it anymore... Furthermore it is standard protocol to scan from neck area to just under the pelvis, so the knee was never scanned!
I have doubts about the imagery: isn't it so that an MRI is clearer with more details than a petscan? Or is the quality the same? The last pet was in june: everything clear. The one before in december 13: evertyhing clear. MRI of one area: bang! Or is this my fantasy?
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Solala, I know that different imagery is good for different things/organs. I had much the same; no scans and no AIs because I was beyond five years; had pain 18 months later and was send to physical therapy, etc. Then an x-ray and my femur was about gone.
Hang in there!
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Thank you all for your kind words.Dunesleeper - did you finally get a prescription for pain meds?
Annie - good luck with your appts and the snow.
Hugs to all
Linda
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KiwiCatMon - did you have a rod inserted in femur? If yes, how long ago and do you still have pain? The reason I ask is I had surgery to my femur in April 2014 and have increasing pain the last few weeks.Linda
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Oh my gosh Linda, you won't believe what I did today. I pulled out all the stops. It's embarrassing when I think back on it, but most of the day I giggled myself silly about it. OK. What happened: I called around 9:05 and got voicemail. What an opportunity! I could speak my mind without interruption by that nasty Shirley. I said I was calling to see if my prescription was there yet or at least a note telling me why it isn't there, why I can't have it. I said that possibly my short-acting pain pills will last me until Dec 4, but if not they should know that they are responsible for having a dying patient laying in bed in pain. (OK, now, I have no intention of going anywhere anytime soon, but I was milking it. I apologize if this offends anyone. I understand how it could.) Anyway, then I added that I wasn't sure HOW I would be able to get to my appointment if I was in such a great deal of pain. I said all this in a voice that sounded like bored and sing-song. They called back 10 minutes later and then again around 11:30. I was at work and did not hear the phone vibrate. I saw the missed calls at noon and called them back. Shirley was as sweet as pecan pie to me and told me the script was there and I could pick it up anytime. I said I'd be there tomorrow. She said oh, but we're here until a little past 5 and you can pick it up today ANY time. I told her I was at work and could not pick it up today and would be there tomorrow. So ..... what do you think she thought about that. I'm nearly lying on my death bed in terrible pain --- but I'm at work. OMG!!!! I'm laughing again.
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You ladies have some scary stories to tell. I sure hope they keep a good watch on what is happening with all our bones. Personally, these bones need to sail the Danube in the Sprinng, gosh darn it!
Terre, I love the pukeko! It's a beautiful bird.
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Hi Linda,
I have my lovely hardware! Titanium rod in my femur from hip to knee with pins and screws and bolts and nuts.
I'd get the pain checked out.
I still hurt some days; some more than others. However, the majority of my hip/leg pain is from the Femara. Lovely side effect that is. Also my incredibly arthretic bone on bone knee on the same side as the rod. So, since my knee hurts, I limp a bit which makes my hip and leg hurt, etc. Some days it really hurts, especially where the ball goes into the socket (where the leg and hip join up). But, I've had bone scans, x-rays, CT scans, etc., and it's basically arthritis and Femara. My incision in my butt cheek hurts some days too (that may be TMI). Some days I am sure I need to go see the orthopedic surgeon again and then a few days later, I'm ok again.
That said, talk to your doctor, and at least try to get an x-ray to make sure all the hardware is doing what it's supposed to.
Others here have pins too, I'm sure they'll weigh in on this issue.
Good luck!
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Dunesleeper - Well you made me laugh. Hey, if that's what it takes - go for it! Unbelievable what we sometimes have to do. Anyway, hope you find pain relief soon.
Linda
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KiwiCatMon - yes lovely hardware! I spoke to my Onc about it - xray on Friday and I'm waiting for bone scan appt.
Linda
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Hello to all,
Dunesleeper, omg I'm still cracking up at your post, too funny. Thanks for the chuckle. I wonder if Shirley caught on
Terre, loved the pictures of the pukeko, looks like a very interesting bird. Would love to see New Zealand! Met someone from there when we were in England and it seems like it would be a beautiful place to live.
Well off to bed I go. Early start tomorrow and we've had quite the blast of winter and currently winds are 90 km/h and our shutters are rattling. I hope I get some sleep.
Hugs, Annie
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I took my last long-acting pill today, so the timing was perfect. Also, I would likely never have allowed myself to be in that much pain. I would have gotten what I need from the streets. They aggravated the heck out of me because they were basically ignoring me, just like when I was trying to get through to the doc when I knew the cancer was back. I'm not going to give them a third chance to make me feel like I don't matter.
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Terre, do you ever try a knee brace. I have a problem with my left knee and know what you mean about limping putting more stress on other places. I have a pretty decent brace that makes a world of difference.
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Annie, I hope you can sleep with those rattling shutters. It sounds totally brrrrrrrr to me. This winter is going to be cruel. I pray the homeless are able to find shelter and warm food.
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Hi Dune,
Do you mean like an elastic knee brace? I did and it made things worse; I was in true agony rather than just intense pain.
It is lovely here...captured tonight's sunset over Kapiti Island. It was a cracker!
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Hey Terre, that's an amazing sunset, a real cracker! I don't know if it would work for you but he brace is more like this: Knee brace.
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Dunesleeper, you crack me up. And I want you to makeany phone calls for me to bureaucratic offices!
Terre, that bird is interesting, but I find its name a little inappropriate for cancer patients who might be on chemo. PUKEko? Hmmm..... maybe it's not inappropriate. Maybe it should be our mascot.
Leah
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LOL @Leah! I never thought about that.
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hello. I usually just lurk on here and have only posted a couple times on here. I also have bone mets. I love the way you guys seem like family. I was inspired to post by Carla's post re the camper in the snow etc
Carla - glad you finally dug. You do indeed sound like a strong women. Cancer def changes our bodies but it's better them being dead. I struggled with the scars of bilateral mastectomy then reconstruction surgery. They didn't bother my dh he is as attracted to me as before but in my brain I didn't want him to see me naked. Crazy after being together 34 years. It was a huge issue for me for a long time. Now not so much. My scars shows the battle I have been thru to live to see my ds's (12 & 9) become men graduated from school.
Dune - glad you got your ssi cleared up and know when you will get your first check.
Dlb - love your quote about family and friends still love me scars and wrinkles and all. About a year ago I thought I read about you reading Patrick Quillin's book Beating Cancer with Nutrition. Was that you ? I am considering buying it. If it was you , do you think it is a good book?
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Hi Leah...That made me laugh. Sorry to disappoint,, but, it's not puke-eck-oh. It's poo-keck-oh. So maybe the mascot for those of us on anti-inflammatories who "skip to the loo" way too often.
Thanks for the knee brace info Dune. I'll see if I can find something similar. I'll be all braced up - have a wrist brace for the sore hand that's courtesy of Femara, so maybe I can have matching appendages. I do moan a bit about Femara, but it's keeping me stable, so I am happy to have it. Also, glad you got your SSI cleared up.
Nice to hear from you Patty!
Hugs to all,
Terre
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When we were in NZ last year, we drove through a town called Te Puke. My family had a great laugh until the guide explained it was Pookay, not puke. She then gave us a short course in Maori pronunciation.
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We call it "To Puke".
There's also Whakatane, which is pronounced Fack-a-tan-ay, but which we jokingly call Whack a Tane. There's a lot of "Puke" stuff here...it means "hill".There's also a town named Waipu, which is pronounced Why Poo. They have an advertisement contest for the schools every year, and one year the primary schools were supposed to do an ad around town pride. The kids from Waiup did: Why poo in Waipu - and featured the lovely toilets in the schools and the public toilets around town.
It was hysterically funny.0 -
Hello everyone,
Terre, I love the picture of the sunset, absolutely breathtaking.
PattyPepper, welcome back. Just wanted to touch on what you said about your dh being just as attracted to you as before your bilateral mastectomy. That is really so special and it really strikes a chord with me because my hubby is the same, never once made me feel like I wasn't just as beautiful, and never wants me to feel uncomfortable about my scars. He's always so loving and never makes me feel like anything has changed. When I was young a woman who lived next door to us had breast cancer and had to have a mastectomy. No chemo or radiation and she is still living, 90 years old. Her husband didn't want to sleep with her anymore, made her feel disfigured and started running around with other women. It devastated her and she became a hermit, never left her home, it was so sad. Just makes me realize how fortunate we are to have such supportive and loving husbands.
Well I had my mould made today for my radiation and it was quite a long appt. It was hard laying still for so long. They had to do two different scans. The sternum and humerus are being radiated using Stereotactic body radiation therapy and the L5 and rib are being treated with Cyber Knife. I asked the radiation oncologist about how I'm going to feel once the radiation starts and he said I may have bony pain from tumour flare and the sternum one may cause some esophageal discomfort but he said it shouldn't be anything major, I hope he is right.
Wow just laying there today really made me tired and achy. Heading to bed shortly. I probably need to take something for pain tonight.
Hugs to all, Annie
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The little one kept me hopping, running, and lifting today. It was definitely a pain pill day today. Several places where I know are mets bothered me this evening. I hope it's the exertion of the day and not a sign the meds aren't working. I will know that answer soon enough. Annie, I'm glad you are getting the rad preparation going. Terre I love learning the names of your towns. Best wishes for a pleasant night or day for us all.
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Patty, to answer your question... yes, I've frequently recommended Patrick Quillan's book, Beating Cancer With Nutrition. The only one I like better is Anti-Cancer, A New Way Of Life, by David Servan-Schreiber, MD, PhD (now deceased, but who survived a deadly brain tumor far longer than ever thought possible). It was a NYTimes best seller, and is much more entertaining to read than Quillan's book. I buy a lot of books on AbeBooks, where you can often find much better prices than other websites. Deanna
http://www.patrickquillin.com/beatingcancerbook.ht...
http://www.anticancerbook.com/
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thanks Deanna. I will have to check the other book out and thanks for the links.
Duneleeper - hope you got a good nights rest after all that playing yesterday.
Annie. - hope the radiation does it's job with minimal se. It's great to have such wonderful hubbies. Yes after my first dx many many women telling me their husbands left because they couldn't deal with cancer. Whew. Glad we got good ones.
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Up and ready to start the day. One latte down. One to go. Excited about my list of chores. So much to do and at last time to do it. It
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TGIF.
Have my first follow-up PET scan (two months after the initial one) on Monday, to see if Tamoxifen and zometa are doing their job. I keep obsessively self-monitoring, checking out my pain levels trying to figure out if anything is different. I'm not usually an anxious person, but I feel a little jumpy today. Thankfully, I have my acupuncture appointment in the afternoon. A few needles in my head, hands and feet (those ones really hurt!) and I should calm right down.
Bought a plane ticket to San Francisco for the first week in December. Also bought the trip insurance, in case I need to cancel or change anything. Ex-boyfriend, who lives down there, has been texting me a lot. I wonder if sex is in my future? I wonder if I can handle it. I wonder if he can.
I am worried about what will happen at my job when I'm not there. My back-up person can't really handle it. I need to train her more (better?). She has retention issues: trouble remembering things I've said multiple times. I'll have to write everything down. And try to get caught up as much as possible. And ask people to only give her the urgent things.
Also my best friend at work just took a job, so we won't be seeing each other every day anymore.
Now I think about it, I have a lot on my plate. Will try to take it easy wherever possible this weekend.
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