Bone Mets Thread
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EWWWW...Marmite when you think it's chocolate! EWWWW. Ick. I'm not a Marmite or Vegemite fan. My hubby is a kiwi, but likes Vegemite over Marmite. Hangi is the traditional method of Maori cooking in the ground and it's usually quite good food. And yes, McD's has the Kiwi Burger from time to time. I don't mind beets (called beet root here..and kiwis are kiwifruit because "kiwis" are either people or birds) but would rather have a nice slice of onion.
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You can just imagine her face when she took a big bite of that croissant. I tried to warn her but she insisted it was a chocolate spread. I bought a counting book for my class called Ten Kooky Kiwi, and learned that Kiwi is both singular and plural when referring to the bird. The book comes with a CD, so the words can actually be sung. It's written in Maori as well as English. For the record, I have not even attempted the Maori version
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That's awesome, Caryn! May have to introduce you to my husband's niece, who is highly fluent in Maori and have her give you lessons. I can pronounce things well enough to make fun of the American-voiced GPS I have which really butchers Maori town names. I plan to go for citizenship (I can do dual) next year and will need to learn to sing the NZ national anthem in Maori and English.
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Hey, I have a question about bone mets. Last summer I pulled something in my neck/ shoulder area, after floating around on a pond on a poorly inflated raft. I was paddling myself around in a neck forward position for two hours, and did not notice the injury til a day or two later. It took months to really heal up. Fast forward to April, when I was scanned for mets, and a problem area lit up at C 6, right where the injury had felt like it was. Now, if that was mets at the time, how did it get better? Or was it unlikely to have been mets at that time. Do they ever stop hurting on their own, without radiation? Maybe its just arthritis, but how do they tell the difference?
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MameMe was your scan a bone scan or a CT or MRI? The type of pain/injury you describe from last summer after paddling for 2 hours could be muscular and/or arthritic in origin. It's not unusual to strain your neck muscles and aggravate pre-existing degenerative arthritis in that situation that can be painful for months. My CT scans have "lit up" for years around my lumbar spine due to longstanding degenerative arthritis and now that I have Stage IV Mets in my abdominal nodes the radiologists have decided I have "suspicious for mets lesions" in the lumbar area. However, when a bone scan was done it said no active bone mets anywhere....only arthritis! So...some scans can see the same thing but have different interpretations. Knowing my long arthritis history I am inclined to trust the bone scan until the CT's can show that something is actually growing.
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Har det bra, anastrozole. Hei, letrozole! (Goodbye, Anastrozole . Hello, letrozole)
I had a visit with my mo today. My only real complaint is that the se's of Anastrozole, have actually been getting worse over time, particularly bone/joint aches in knees and ankles. I was just on the cusp of it becoming really uncomfortable so a chat was in order. I am switching to Femara (letrozole) tonight in the hope that the aches will lessen. Yes, I have taken curcumin, boswellia and glucosamine/chondroitin to no avail. I am a little leery about the switch, since I've been NED, but since I'm not switching due to progression, I can always go back (3 month trial). Here's to equally good bc control on letrozole!
Caryn
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Good luck with the letrozole, Caryn. I take it and ache all over, but it's arthritis as much as anything according to the bone scan. And I'm still working full time.
Don't know if anyone is interested, but the newspaper here asked for submissions on living with an invisible disease. I was having a bit of a pity party day after not being able to get a seat on the train and riding for an hour standing up and being bounced around. When I got off the train, my back was in agony. And my hip. And my arthritic knee. And this isn't an uncommon occurrence. When I do ask for a seat, sometimes I'm just flat denied and sometimes get the "fat lazy" comments. Just annoying as hell. Hate having to ask, hate being sore. Glad to be alive. Anyway, my submission was published. It's a bit of a whine and pity party and rather dark. Probably shouldn't write when I'm having a crap day.
But I think people need to be aware that they shouldn't rush to judgement in any event, be it an invisible physical illness or emotional pain. Because you never know what someone else is facing.
http://www.stuff.co.nz/stuff-nation/assignments/li...
Hugs to all,
Terre0 -
Terre - I think you hit a homerun. I didn't think it was whiny but realistic and I am sure there are people who will be looking at others with a different heart. (Not everyone but even one is a contribution).
Let me tell you an unflattering story about a recent experience I had.
Last Saturday we went to the airport to pick up our two grandsons (8 and 9) who were flying unaccompanied for the first time. My daughter-in-law had given both my husband's and my name to be at the gate to see them come off the plane. The company customer service person made a mistake and put down my DIL's name instead of mine and I was unable to meet them at the gate. I was very disappointed and also dealing with a lot of pain walking. When we got to the escalator this boy about 10 charged in front of me and his family quickly followed. I made a comment to my husband about how rude it was. I didn't say it loudly but I didn't lower my voice either. When I got to the top of the elevator I saw that the family was setting up in a group at the egress point and holding up a big sign welcoming home a solder. I felt very small and sorry I had been so self-absorbed.
Guess the good news is that I am still learning to be a better person. Maybe your letter will help someone else learn that lesson as well.
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Caryn, I hope that this switch gives you the relief you're looking for! You took a huge step, putting your quality of life above the anxiety of making a switch in AIs. Those choices are so difficult to make. As a fellow Arimidex-taker, I understand the issues with aches and pains. I'm sending positive energy your way. Fingers crossed!
Virginia
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Kiwi, your article is well written. I never really thought about it, but this can definitely be an "invisible disease". Just as brigadoon writes about learning to be a better person, I also feel that way; I try to be more tolerant. So many people walk around in good health not realizing what someone else may be experiencing. It's a shame so many people judge others so quickly and are so certain their assessment of someone else is right without ever giving them the benefit of the doubt.
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Terre,
I just read your article and appreciated every word. Thank you so much for being vulnerable so that, maybe, people will be a little more understanding. The only thing that I take exception to at all is how hard you were on yourself when you posted the link here. I didn't hear a whiney voice, or a pity party. In my opinion you weren't dark or pitiful. You were honest and direct. You didn't ask for special attention or care. You simply asked that people be not so quick to judge others. That certainly isn't an unreasonable request. I think everyone will find, at some point in their life, that they wished people weren't so quick to judge. Maybe you've made some difference. At the very least you expressed yourself well. I hope that feels good.
Virginia
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Nice work, Kiwi. Concise, clear and true. Thanks for sharing your writing.
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Terre, your article was spot on! The whole topic of an invisible disease reminds me of a wonderful You tube video that I might have gotten from BCO but at the moment I'm too "in my cups" to try to find it and my brain can't come close to thinking of the title (I'm celebrating the last day of school- whoo!)
Caryn, I ditto what Virginia wrote and hope it works well for you. I'm on letrozole and have some "warm moments" (wouldn't call them full blown hot flashes) and some constipation but no joint pain. I'm new to them though- just 2.5 months.
Lisa
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divineMrsM a quote from Pride and Prejudice goes perfectly with your post: "
It is particularly incumbent on those who never change their opinion, to be sure of judging properly at first."
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Caryn, I changed from Arimidex to Femara almost four years ago and it got me to NED and has kept me there. My change was due to a small progression but the SE from Arimidex were horrific for me but the SE from Femara have been many but fleeting so easy to deal with. Hopefully the change for you will be as good as the change was for me. Good luck!
Terre your article was great! Well written, well articulated to the problems of the hidden disease and other peoples perception of that person suffering. hopefully many people read it and it sank into their psych so they will be less judgemental of others.
Love n hugs. Chrissy
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Wow, Terre, what a great article! It, and the other comments here about being quick to judge have given me much food for thought this evening. Love you gals, Deanna
P.S. Caryn... about the supplements you mentioned as not being particularly helpful. Have you tried more than one brand? I've found a significant difference in the way my body reacts to Life Extension Curcumin (love it!) over another brand I bought when my store was out of Life Extension. Hopefully, the Letrozole will work great for you, but if you still have joint issues, you might want to try some different supplement brands. I've had the same thing happen in the past with Bosweilla. Loved the one with the orange cap (Himalayan?), but another brand was totally worthless.
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Chrissy,
Therein lies my quandary...I have been NED on Arimidex for almost 3 years. No progression at all but just worsening se's over the past 6 weeks or so. Not unbearable, but heading in that direction. My mo did not seem to think that switching to Femara would jeopardize my stable status. I swallowed the first Femara tonight with a large glass of water and a double dose of faith.
Caryn
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Caryn, I've been stable on Letrazole for almost 18 months. And the side effects aren't that bad. My hot flashes have subsided quite a bit and night sweats are pretty much gone. I'm sure you'll do well on it - fingers crossed for you!
Thanks for all the kind feedback on my write-up. The paper has been running some really good stories here on "invisible illnesses" and have covered Lupus, heart disease, fibromyalga (sp?) and others, but no cancer. People think that someone with cancer shouldn't have hair, should be skin and bones, and should "look different." I met a woman with Stage VI with bone, lung, liver, and brain mets. She is a seven year survivor since the Stage VI diagnosis and she looks fantastic! She was travelling on business and I sat next to her on the plane and noticed her pink ribbon pin, hence our discussion of being Stage VI. Looking at her, you'd never know anything is wrong, but she does use a very stylish cane.
I try hard not to be judgmental, but do have my moments. Being judged and not getting a seat on the train helps remind me not to rush to judgement of others; none of us knows what others are facing at any given time. So, my aim was to hopefully reach at least a few people and tell them not to be so quick to make up their minds about others. And I love the quote! So true!
Caryn - I had a child and his mother do much the same to me the other day. Sadly, they didn't have a good excuse - they were just rude and oblivious. And I was judgmental of them, I will admit!
Hugs to all,
Terre
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I'm more clear headed tonight
Here's a link to the video i mentioned. It's about compassion and it speaks to Terre's piece and the idea of "invisible diseases" I hope the link works because I'm not at all techy.
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The video works, wow. Makes you think and look at people and life in a whole different way. Makes me realize even more that it is not all about me!!! Even though I have bc, everyone has something going on in their lives. I have learned not to feel sorry for myself while living with this disease.
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Incredibly powerful video. Wow. Thanks for posting.
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Love that video! And so interesting that it was created by a medical facility. It reminded me of something I once heard in a seminar along the same lines that I've never forgotten... that if everyone in a group could put their troubles in a backpack and pile them all in the center of the room and you could leave yours and take any other backpack, most of us would choose to take back our own.
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The backpack story is good! Thanks for sharing.
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Hi All! I had a Zometa infusion the Tues before last. The Sun after, so 5 days later, I hit a wall. I've had no appetite. Zero energy. I have been so dehydrated, despite drinking a lot of water. I've been in so much pain. Bone, joint and muscle that is not relieved by ibuprofen, I've had to break into the pain pills, and my brain seemed fuzzy. It's now one week later and I am barely starting to feel human again. I am going to call Doc on Mon, probably already should've done that. Anyone else have this experience? I had the same experience, not quite as bad, last time I had a Zometa infusion. I can't take xgeva due to sorbitol allergy. I don't want to take Zometa again if this is my experience. I'll be getting scans again on the 3rd. Tumor markers jumped up 120 numbers in a month. Thanks.
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Skylotus, sometimes slowing the infusion down helps cut the SE other than that I don't know. I sure hope you get some more info as those SE sound like hell.
Love n hugs. Chrissy
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Hi Chrissy! Thanks, yes, they did slow it down to 30 min, the infusion. I'll call my Doc on Mon. If it was a little worse, I may have pondered going to the ER. But, I wanted to see if rest would work first. ;-)
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Skylotus do rest but if you are still feeling as you do now give your doc a ring. There is nothing worse than bone pain that just won't let up.
Sending love n (((((((hugs)))))))). Chrissy.
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Skylotus, my infusion was typically 2 to 2.5 hours and I was sick as a dog for days afterwards. The first one, I was sick the day of and the next day. The next one, I wasn't as bad, but by the fifth one, I was trashed for a week - like a really bad bone ache flu. They stopped them because I broke a tooth and developed ONJ. I started chemical menopause, Femara, and Zometa all at the same time, so I wasn't sure which was making me so sick. Did radiation in the mix too. At any rate, once the Zometa stopped, the "flu" stopped. But mine wasn't nearly as bad as yours sounds. Talk to your doc and good luck!
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Skylotus,
My first Zometta was horrid, like yours. Pain like I've never experienced before or since, exhaustion etc. my infusions now run THREE hours. I get about 30 min of saline, the Zometta over about ab hour with Saline and then end with Saline. I often take half of a Xanax and sleep through the whole thing. I've been at it over three years now and this seems to do the trick. I still feel kinda like I have the flu for a day or two, but nothing like before. Be sure to talk to your doc before the next Infusion. They have to write orders for it to be given this way. Oh, and hydrate big time for a day or two before.
I hope your next infusion goes better. I'll be thinking of you!
Virginia
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white in a PET scan
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