Bone Mets Thread
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myra. - welcome back. !!! Great to see ya
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Sqrlady...The neighborhood named him Chester.
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Myra! So good to hear from you!!
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Bosco wow what a shocker. It's not fair. So sorry you have to go through this hardship. Hope you get your next tx plan real fast. We go back awhile. Hugsssss
Dee - you deserve so much better. Dani's past Onco did the same dancing around when questions, issues when the going got tough. They get scared. Who needs people like that?? Who do they think they are? You are not interrupting their coffee break, THAT IS WHAT THEY ARE SUPPOSE TO DO. It gets me so mad. Always bumping into these kind, and I was just reading a book written by a doctor, and NO it's not acceptable this way. If you could go some place else...your questions and worries have to be answered. Warms hugs, and I humbly thank u for the support. I just try...How old is your son Dee?
Annie let's share that drink. You kidding with all you have to put up with, and then having your little one going away....Let us know hoe are you coming along, we will be here, holding your hand.
Lynne celebrate, celebrate you got. Enjoy your wonderful company. How nice to have them there with you. I am really hoping KendraS just took a break. She had some news about testing and then...we didn't hear much only when she shared the news from Leah.
Patty - good luck w the rads, maybe it is safer to do that and avoid breakage. It's a very draining process for sure, but maybe if you could look towards the outcome...My daughter also said, who has got time for that?
Babs everyone is thrilled for you!
Cristina good luck on your scan.
Sgrlady good luck for you.
Myra - Aurora nice to see you guys back.
Terre oh my, they look so happy where they are at.
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I was out of town and away from the computer all day, so will catch up fully tomorrow. For now, I just have to say how sad-mad-angry-upset I was to read your post, Bosco. I am so sorry. Please keep us posted on your MRI results and next step. You will be in my prayers!!!
Happy Birthday, Cristina! Hope you've had a wonderful day full of everything that makes you happy!
I was at an out-of-town board meeting with my hubby today, and the strangest thing happened. It was in a private room at a restaurant in another city and a handful of other spouses were there, and who do I sit next to? A lovely woman who tells me within the first few minutes of introducing ourselves and chatting about the menu that she has Stage IV breast cancer! Crazy! Anyway, she was originally Stage II -- 16 years ago! When I introduced her to my DH, he shook his head and comment that it's a damn epidemic. When she introduced me to her DH, he was literally speechless! I mean, really, what are the chances of that happening?
More tomorrow... after I've read what I've missed!
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good morning all. Happy Sunday to you
I slept great. Woke with sorevtroast and ear. Darn had hoped it would be gone by today. Had some frank discussions with dh last night left me drained and down. Trying hard to remember how hard it must be for him.
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Good morning Patty, yep those conversations drain our energy but sometimes necessary. Sending you good energy this morning!
Deanna - small world indeed.
Bosco - woke up thinking of you.
Happy Sunday to all!
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LindaE54 It was me that was asking about TM and Xgeva. Thank you for your response. I can't find anything about it causing an effect but I wondered because my markers started inching up with each shot. I think this last rise though is from the respiratory infection.
Lindalou What a gorgeous squirrel Chester was. They are such amazing animals. They adapt to anything that happens to them so much easier than any other creature I have ever met. Thank you for sharing the photos.0 -
Happy birthday, Cristina!
Bosco - I am so very sorry to read of your progression. That sounds terrifying. Here's hoping, wishing and praying for a treatment regime with no more progression and no side effects!
Patty- hope the rads help!
Annie - fingers crossed for your scan - all good results!
Sqrlady - glad you're on the mend and feeling better.
Lynne - so glad your DH is doing so much better.
Dee - your energy puts me to shame! I did the Otaki market yesterday for Kitten Inn, came home and had a 2 hour nap. Still tired today.
Sending hugs and good wishes to all
Terre
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a two hour nap sounds perfect darn its easy too late in the day here for that ...oh well maybe tomorrow
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Terre, You wrote "Dee - your energy puts me to shame! I did the Otaki market yesterday for Kitten Inn, came home and had a 2 hour nap. Still tired today.
"Are you seriously kidding me????!!! LOL! You are the most energetic person ever! Glad you got a nap in. The only reason I keep going is because I'm scared if I stop, the cancer will catch up with me.
Patty, It's so nice to see you posting here often, I was so worried about you for so long.
The sun is out here today, but too cool to be out in the garden, so I'm going to go & help Pencil Boy (my pet name for DH) clean out his work shop!
Hope everyone else on this thread is having a good weekend. Hugs to all of you! Cheers, Dee
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Dee. Pencil boy ?? Lol. Good to get out of thd house.
Was very nice outside today. Spring is coming. Yea !!!
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I know I can't be alone on this.
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You are not alone in this Patty. I wasn't kidding that I feel like if I stop the cancer will catch up.
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That is truly how I feel today! I'm anxious about a biopsy on my femur replacement this week and a lung biopsy next week. Even though my kids are older (25 and 27), they still expect me to be strong when they are around.
My best to everyone. We can do this, right!??
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Update on today's Zometa infusion:
I was well prepared - well hydrated, taken Loratadine, booked myself to be in bed for today and tomorrow, mentally prepared for another big hit. As instructed by my Hospice Nurse, I told the nurses when I arrived about the bad side effect of the last infusion. One of them went off and fetched the Chemo Room supervisor.
I recited again what had happened the last 2 infusions, and she said that Zometa was optional, I didn't have to take it, that it would make no difference to my cancer treatment or progression, and that, having had 2 shots, I didn't really need it anyway.
So I was sent home again with no infusion!
On my way out I dropped past the radiology department to confirm that my oncologist had in fact forgotten (again) to order the Bone Scan and CT he had promised I would have in January. I don't know how we are going to discuss the results on the 17th of February if I haven't had the scans.
I was told to ring her back this afternoon after she has read my case file. So I'm not sure what will happen next.
Watch this space!
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Patty - that is me!
Dee - I'm thinking the same. If I stop, cancer might catch up. And I'm trying to pack in as much living as I can.
I am chronically tired, but my pain isn't bad. Biggest issue (I know this is TMI) is that I wake up and need to pee about every 2 to 3 hours. So I never get more than 2 or 3 hours sleep a night. I know that contributes to my tiredness. And..good news! Big Pharmac who controls all things medical in NZ has switched to a different brand of Femara. And my SEs are less on this brand (both are generics). My arthritic knee is once again the biggest amount of pain I have. I still have days when I ache all over, but instead of always being at about a pain level 4, I'm now at about a 2 or 3. Much better.
Suems....I am so sorry about the crap treatment you're getting! I know Dr. I doesn't believe in Zometa; when I developed ONJ (was getting Zometa under the first MO I had), I asked Issacs what I should do and he said "nothing - I think it causes more harm than good, especially if you've had ONJ". He thinks I should get my calcium from a good diet and the only supplement he recommends is Vitamin D. At any rate, I hope you get your bone scan soon...waiting is the worst!
Sending hugs to all,
Terre
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Momallthetime and Terre, thank you for your well wishes on my scan tomorrow. Major anxiety tonight and can't fall asleep.
Terre, glad to hear you're having less pain. I've thought of switching my brand of letrozole. Right now my arm and shoulder are really bothering me, of course right before my scan just to add to my anxiety. Haven't had pain there since rads last December. Hoping I've just aggravated it from some exercises I've been doing.
Patty, I feel the same way. So hard to always put on a brave face.
Dee, I feel like I'm running from it too. I always need to be doing something because if I sit idle I feel like it will take a hold of me. It really messes with our heads.
Hugs to all, Annie
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Annie, good luck on your scan tomorrow. Fingers crossed for good results.
Momallthetime, I don't have a son, no children, so I think you've confused someone with me, but no worry. How is Dani doing?
Suems, sorry you've been treated so badly. I hope you are able to get some resolution soon.
Nice to see lots of you here, LindaE & Lindalou, Terre, Annie, Patty, Stillivin, Sqrlady, Bosco, Deanna (BTW, I got rid of my case, I take stuff to the consignment place now, it works out much better for me!) Aurora, Lovemaltese, Myra, (yay, rads is done!!)
I know I've forgotten some & I'm sorry...
Wish me luck for tomorrow, I'm going to my PCP to talk to him about the brain MRI, what to do about my MO & ask if he can test me for thyroid problems. My hair is falling out so fast, it's crazy & I'm exhausted but can't sleep & my skin is so dry it's like the Sahara, but I live in a rain forest. Sounds like thyroid to me, but what do I know! Cheers, Dee0 -
Dee good luck today!
Annie hoping today's scans show NED
Dee and Patty. I couldn't agree more. I push myself to do more than others and stay brave for everyone else but there are times when all I want to do is to lay in bed! But that would upset and scare my family and friends so out the door I go!
Suems Is there a different MO you can go to?
Wishing everyone a good Monday
Babs
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Dee, good luck tomorrow! Wishing you all the best. I am having some thyroid issues too, but my family doctor doesn't seem to be concerned about it or want to do anything about it. It's odd but there seems to be a big connection between thyroid issues and breast cancer. I've been told I should be taking iodine and that it will also help with MBC, who knows? They won't test our iodine levels in Canada so I'm afraid to try it. Sending all my good mojo your way!
Stllvin, it doesn't matter how old our children are it's still hard to have them see you going through this. Yes we have to be strong around them, sometimes it's hard. But you're right, we can do this!
Scanxiety meter is at max right now. I woke up aching from head to toe. Ugh I think I'm so uptight I've got my body all wound up.
Hugs to all, Annie
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Babs, we were posting at the same time. Thank you so much and NED will be awesome!
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Good luck Annie!!0 -
Dee and Annie - good luck today!
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dee. Good luck at pcp appt re: brain MRI. Hope you get some answers. Thyroid being off can cause so many things.
Stillivin. Hello. Your right... We CAN do this !! Good luck on biopsies. Did I read your time line right ... You've have mets since '97?? Wow. Very impressive
Terre. Glad your pain he decreased. Yea !
Annie. Good luck on scan today. Yes push to get your thyroid checked and meds if necessary. There does seem to be a BC and thyroid connection. Before mets I was having horrible migraines plus alot other symptoms. Even though mom, aunt and g'ma had low thyroid pcp said not hereditary and wouldn't test for it. It was a neurologist who finally figured it out. Now I take synthroid daily and mo checks levels monthly. No more migraines !!!
Well the weekend is gone. Everybody is gone back to school and \or work. So quiet here. Boo. A friend invited me to an class tonight. They serve wine and mixed drinks while someone gives you a painting lesson. Come away with some cool art work and a buzz. I don't paint or drink wine but it sounds like fun anyway. So gonna take it easy today so i can go tonight.
Deanna. Glad you got out of town with dh. Re sitting next to fellow stage IV...small world indeed
Hugs all around
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hi lindae. Guess we posted at the same time. Hugs
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Dee good luck today. Prayers for everyone
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Dee and Annie I'm wishing you all the best on your scans today scary stuff always, but better to know what's going on and the relief after when all is good will be golden.
Deana that is so weird I always wonder walking around the city looking into folks faces ..how many are we really. I think I would be shocked to learn the answer.
Terre glad the pain is less I have very bad knees and have had surgery on one. I found cucumerin to be very affective. Lots of fresh tumeric and supplements enables me to go to the gym and keep myself moving.
Patty that's sounds like lots of fun even without the wine😉
Funny I have been getting tons of private messages from people interested on finding out more about medical marijuana many are afraid to post on the thread because of repercussions from various sources. They need to remove the schedule one designation it ridiculous. I would hate to feel so controlled.
Hello to all and I wish you all a wonderful Monday
Wendy
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suems, I'm bothered by your Zometa therapy experience. I missed your posts regarding the previous two Zometa treatments, so I am not sure what you'd experienced was reaction or side effects. I just want to inform you of that although Zometa does not directly attack cancer, it is very helpful for improving the length and the quantity of our survival. Zometa is a kind of acid and would attach to the bone lesions once in our body, for the lesions are attracted to it. Then Zometa will draw the calcium in our body to the bones affected by the cancer, putting layers of new bone there. So it is important for us bone metsters to be aided by either Zometa or Xgeva (works in a different way). I think you should discuss your Zometa incidents with your onc. The nurses should not simply send you home without treatment. The doses of Zometa given us are quite high, maybe your doctor would reduce the doses a bit to get you started. I had severe reaction to my first dose of Zometa, high fever, whole body shaking, short breath, ended up in the ER. It never happened again. Hope it helps !
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