Bone Mets Thread
Comments
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Condolences Cristina. Gone too soon.
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Christina-Thanks for sharing your photos. It's always nice to see family photos. Wishing you luck with your upcoming treatment.
Dune and LindaE- My husband and I just completed all our funeral plans etc. It was hard at first, but once we started the process and finished it, it became quite a relief. We only have one child and didn't want him to deal with that as well.
Thanks for the tip of NSAID and narcotic.
Patty- Hope today you feel some pain relief. I know how exhausting being in constant pain can be.
I have lots of scans coming up next week and the following week. I misstepped off a curb today and wham....pain shot right up my back. Luckily I didn't fracture anything more. A little boy saw me and he asked me if I was ok. So sweet
To all a good Tuesday and rest of the week. I vote we all go out and treat ourselves to ice cream.
Linda
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Cristina, your cousin was absolutely beautiful as are you! Again I'm so sorry for your loss, she was far too young. Thanks for sharing the pictures.
Deanna you're welcome and I'm trying to figure out how to send you the entire article I have on detox from my nutritionist. Hope to get it to you soon.
Lindalou, thank God you're ok after your misstep off the curb, I do that all the time and boy it sends instant pain! So cute that the little boy was concerned for you. Best of luck with all your upcoming scans, sending positive thoughts. I have a CT scan on the 6th of August and having major scanxiety.
Well considering today is another scorcher with a humidex well into the 40's dd's and I are heading off to Vineland to spend the day with another friend at her pool. Looking forward to a day of doing nothing but relaxing with my girls. I will post pictures later.
Hugs to all, Annie
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Thanks Annie....can you post the article on detox or PM me? I have scans on the 3rd, 6th and 10th. They are spread out because of my allergic reaction to the contrast. Yippe!!
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Lindalou - In addition to NSAID with long-lasting pain meds, I take 2 Tylenols extra-strength. My first nurse navigator gave me a lot of advice on pain control. She said the Tylenol boosts the effect of the narcotic. I notice a difference when I don't use them.
Cristina - Heart wrenching to see such a beautiful young woman pass. Thanks for the pics.
Patty - praying you're feeling better.
Annie - would love to see that article.
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Cristina, my heart breaks for you and your family. Another lovely young woman taken far too soon.
Amy
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Cristina, so sorry for your loss, she was a beautiful YOUNG woman. You also are stunning with a smile to die for (no pun intended) good luck on you upcoming chemo. :
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Hello everyone,
Wow I had an awesome day with the girls but I am exhausted from the heat! We had so much fun though, a very memorable day. The picture I'm posting is of me and the girls chilling on my friends patio after spending the entire afternoon in the pool. Needless to say we are a little red! Her pool is a salt water pool and I have to say I did not have an ounce of pain while I was in there, I did not want to get out.
Lindalou I pm'd you. And Linda, I will forward the detox to your email address.
Deanna, did you get the email I sent you?
It's been a little quiet here today, did you all miss me while I was gone?
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Sounds lovely Annie. I'd love to try that salt water pool! Now I hope you are enjoying a relaxed sleep that will rejuvenate you for tomorrow.
Christina, thanks for sharing Kris with us. I'm calling cancer an epidemic now. It's everywhere. And it should NOT be affecting girls as young as you and your cousin. Asking WHY to that would be excuse enough to travel to the NIH to meet with the NCI. Oh, I know it won't do any good, but I'm on a bunch of pain meds right now. They are not putting me to sleep. They are making me get mad.
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cjanet - So very sad about your beautiful young cousin. My condolences. I buried my brother less than 3 months ago. It's not what we need on top of this but sadly it happens. Good luck with your 2nd opinion.
Seen my MO yesterday and he sent me for x-rays. He is consulting a radiologist to see if my bone mets could be zapped to ease my pain in the worst areas but also will keep going with weekly Taxol too. Also going to be taking injections for chronic constipation. Maybe that will lessen my nausea and vomiting.
Beautiful pic Annie!
Cathy
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Great photo and looks like a fantastic day out, Annie! Saltwater pool would be wonderful.
Dune - sorry you're in pain, but you always make me laugh. It is an epidemic. I need to get mad; right now, I'm just sad.
Tryn - hope they can zap your pain into submission. And that the nausea and vomit abates. How miserable! Hope you feel better soon and that the treatment(s) get you stable quickly.
Hugs to all,
Terre
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Annie - Beautiful photo of you and your girls! You all look so pretty and so relaxed.What a great way to spend the day. I got your PM. Thanks
Dunesleeper - isn't it frustrating to get no relief from pain and no sleep either? I hear you.
tryn2 - Good luck with the RO and getting some pain relief from treatments.
Hugs to all.......
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Annieoakley,
Whenever I'm in a pool my pain and all my cares go away. Maybe it's because I'm a Picses or maybe just because water has always been my go-to place when I need to decompress. Anyway, love your picture with those adorable girls.
Amy
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Dune, I can't even tell you how great I felt in that pool, amazing really and it was like there was nothing wrong with me. Within a few minutes of being out of the water I could feel my pain again. So I just kept going back into the pool, spent 4 hours in there and it was so stinking hot out I didn't really want to be out of the water anyway. I hooe your pain is better today and that you were finally able to get to sleep.
Cathy, Terre, Lindalou and Amy thank you for the nice comments.
Lindalou, I sent you the email, let me know when you've received it.
Cathy, I hope the rads can help with your pain and chronic constipation sounds terrible, I've never heard of injections for that.
Amy, maybe it's the decompression that helps with the pain but I found it amazing and surprising how well I felt.
Hugs to all, Annie
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Annie, you and your girls are beautiful. We have 3 salt water pools on our condo property and you have convinced me to give it a go. Have never been much of a swimmer.
Dune, hope your pain subsides, but great news about the node shrinkage.
Cristina, very sorry about your cousin. Yes, cancer s**ks!
Best to all, Linda, Lindalou, try2staycalm, Xavo, Terre, Dee,Deanna. Sorry for any missing people, if I change the page, I will lose my post. What is with this website?
Hugs, Myra
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Thank you Ladies. Annie I will give you the name of it if when I get it. Backordered... sigh. She said the supplier said Aug. 10th. She is trying to do better and get some they may be hoarding.
Terre - Hugs returned. Hope your doing better. Your such a kind person. Sometimes this disease doesn't notice that.
Myra - Just want to say hi!
Cathy
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Annie - You three look lovely! And yes, we missed you - but so much better to be in such a nice environment with your daughters. The three of you look great. Glad you found some relief. And your hair is still intact looking fresh as a rose. Just a bit of jealousy here LOL.
Cathy - I like your new avatar. The address on it is my year of birth. I hope you get relief with rads - it's been very good for me. Never heard of an injection for constipation - I struggle every day with that issue because of pain meds. I try so many things it's ridiculous. I blocked my BF's toilet this morning. TMI I know...
Dune - Epidemic is so true. My close friends are so upset with the dx of pancreatic cancer of their SIL, an acquaintance has melanoma, my neighbour's sister has breast cancer and on and on. It's just too much! Hope your pain gets better soon. It sucks. The black chocolate with almonds was delicious.
Patty - getting worried about you. Would love to hear from you.
Deanna - will be thinking of you on Friday.
And to all you lovely ladies which I will not even attempt to name - Have a nice day. Sending hugs all around.
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Annie, what a beautiful picture and wonderful time! Really heavenly. Envy! I am home alone (husband is out of town, wheather has been himid and hot, plus a tree roots caused backing up basement drain to deal with).
Cathy, do you want to try Aboca Sollievo Bio for chronic constipation? It is not sold in the States. I encountered it in Venice, Italy (the pharmacist recommended it to me) , last summer. It is all vegan. Did not expect it to work. But it does! So far it has been working wonders for me. I take one pill before bedtime and another first thing in the morning. The best and the most reliable stool softener for me. It's very easy to get it online here (more bottles will save on shipping): http://www.cocooncenter.co.uk/?search=sollievo
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Annie,
What a lovely photo. You are a very photogenic family. I haven't been in a saltwater pool since I was a child, but it sound heavenly. Take care.
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Annie, beautiful photo! The surroundings look pretty idyllic.
Xavo, thank you for the tip on the laxative product from Italy. I see it's on eBay, all from Italy. I'll probably buy some too. If anyone figures out the best source re. shipping cost, please share. I don't have time to do it now because I have to see a different onc in my local onc's office this morning. Mine is away for two weeks, and since my pain level has suddenly shot up, I'm trying to get things rolling (mainly insurance approval) on the new meds (Faslodex+Ibrance), pending my scans on Friday. Sort of a pain to have to go all through why I go to UCLA, etc., and watch them roll their eyes (which I anticipate based on the "competition" some docs here seem to feel w/the major places), but I also need my pain meds RX renewed, and they won't do any of that w/out actually seeing me.
Annie, you've also inspired me to swim! Thank you! And thank you for the great info' on detoxing you sent me. Much appreciated!
Good to see everyone else who's posted this morning -- Myra, Cathy, Linda, Amy, LindaLou, Terre. Hugs to all & those not on this page!
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Hi Ladies,
Quick question, I cannot seem to find any threads when I search "skin mets" - actually there's too many hits with "skin" and "mets" - Can anyone help? I hate to even think it, but I have some small red bumps popping up along my scar on the side where the cancer was - googling images, it sure looks suspicious. Half of me wants to run to my onc, the other half wants to put it out of my head until late September when I have my PET/CT and follow-up visit. These buggers showed up within the last week and it started with two, now there's five. Ugggh
Amy
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https://community.breastcancer.org/forum/8
Amy - I found a thread called skin mets which is fairly recent. I hope my copy/paste worked. Can it be shingles? Hope it's not any of the above.
So I looked through my reports re my surprise spine mets. A CT scan of April 2014 talks about a lesion on C5, undetermined cause but did not look aggressive. A CT scan of Feb 2014 talks about new very small sclerotic lesions in cervical and dorsal areas. A CT scan of May 2015 talks about blastic lesions in both cervical and dorsal.
The wording changes from undetermined lesion (not aggressive) to sclerotic to blastic. Last bone scan refers to new lesions on CT but says not visualized, no uptake. I know blastic or lytic is equal to cancer, and I think sclerotic can mean a mix of blastic/lytic, but can also be undetermined? Anybody has some insight?
Edited to add that brain CT scan is Friday.
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LindaE, blastic and lytic are two types of lesions caused by different cancer cell movements. Blastic mets make the bones bumpy, while lytic mets make holes on the bones. So the concepts involved are concerns with the specifics in terms of the types of mets, not necessarily the degree of progression. I guess?
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Thanks Xavo. My understanding is that there has been mild progression since my dx of Nov 2013. They certainly were not there at dx when extensive testing was done including PET scan a little later in Feb/March 2014. As time went by from undetermined and non-aggressive in April 2014 to blastic in May 2015, I conclude it's progression. Perhaps not enough to justify a change of tx because we're talking 7 to 8 mm lesions in both cervical and dorsal areas of the spine. We'll see what the Sept scans will say. In the meantime, my Onc should be phoning me with the results of the brain CT and I will bring it up at that time. That should be in about 2 weeks. I got a few days to get used to the idea that it's progression and am thinking more clearly. I will be sorry to say goodbye to Femara, but overall it's been good to me with minimal SEs.
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Linda, do you know if the same radiologist read all of your scans? If not, could that possibly be an explanation for the change in terminology and/opinion about what was/is being seen? In other words, I'm wondering of someone calling it "blastic" now might have also called it blastic one or both of the two earlier times had he/she read your scan back then. So more a subjective choice of words than actual progression. Just a thought...
Amy, the fact that the red bumps are on your scar line make me think you should get it checked out with your onc. I could be wrong, but it seems like an unlikely place for shingles to develop, and I think a quick look from your onc would ease your concerns. I say that because when I recently described a quarter size red scaly area on my upper arm that never seems to fully go away to my UCLA onc, the immediate look that flashed across her face was obvious concern. So clearly, it's important to be sure. Then when I rolled up my sleeve, she could immediately tell from 6 feet away that it wasn't mets. So just have someone who will know look at it, rather than guessing. I had thought mine might be a spot of shingles -- because it has a sting to the pain when it flares. But she said it looked like eczema.
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Deanna - Good point. All of them were read by different radiologists. Did you get your scripts?
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https://community.breastcancer.org/forum/8/topic/827356?post_id=4288847
Amy - my first link was not the right one. I hope I got it this time.
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Hello to all,
Well apparently yesterday was a little too much excitement for me, I've been very lazy all day and just laying around. My back feels really weak and I hate that feeling, like I can't even support my own weight.
Myra, definitely try the salt water pool, it's amazing, so much so I wanted to go back to my friend's again today just to feel that relief. How are you feeling?
Cathy, would love to know the name of that med when you find out, thanks.
Caryn, thank you for the compliment on being a photogenic family. Congrats on your good news and glad no further treatment is required.
Linda, lol on being jealous of my hair but I happen to love yours. I hope you get to the bottom of those reports, Deanna has a very good point.
Deanna, thank you and yes the surroundings are unbelievable, I'm pretty lucky to have friends who live in some amazing places with breathtaking scenery, I feel like I'm away at a resort when I visit them. You're welcome for the info, glad to help any time because you are always so helpful to everyone. And get swimming 😉
Xavo, thank you and so sorry about the backed up basement drain, not a good time for that to happen but is there ever a good time? When will your husband be back?
Amy, praying it's not skin mets, please do get it checked out.
Hugs to all of you, Annie
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Linda, Deanna, hope all gets sorted out with the change in meds & your pain is alleviated Deanna.
I had my zomedron IV this morning & told doc about my aching sternum & arms. She did a physical on my tumour & is very happy with that, but I've got a slightly tender lymph node near the tumour site & even though she's thinking the aching is from the cold (we do have another cold front on the way too so barometric pressure is changing) she took bloods anyway. FBC, liver & CA153. Now waiting for my friend at the path lab to message me the results. I really do want the tamoxifen to be working...
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Karz, hoping it's nothing to worry about and that you'll soon find out that the tamoxifen is working. Apparently barometric pressure changes can cause us to have pain in our body. We've had intense heat and high humidity and I'm praying that's what is making my back ache more, feeling nervous too with a CT scan coming up next week. Please let us know when you find out the results.
Patty, thinking of you and praying you're feeling better.
Dune, come out come out wherever you are!
Hugs to all, Annie
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