Bone Mets Thread
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Oh geez Deanna. I've had a couple scares too, one in the tub yesterday. That's how falls happen: unexpectedly. Lives change in a moment. I am always amazed by that.
I hope all my Canadian friends enjoyed their Thanksgiving. The pumpkin treats sound delicious. I am on such a sweet kick. I took a Maritol last night and just ate and ate and ate -- and I think it is still affecting me, making me want sweet stuff.
Dee. How cool. Stable. That is a wonderful word. Congratulations to you for catching hold of it!!!!! Now, when you are out there moving rocks and whatever else you are doing, take extra care to lift from the knees. Just be very attentive, please.
We all lose height as we age. Mets causing vertebrae to crumble make it worse. I am certain that physical therapy can help. Stretching helps. Everyone is taller in the morning than they are at night. Gravity does that. I lost about an inch, but that occurred pre-cancer.
The reunion was great. It went by so fast it had my head spinning, but everyone had a wonderful time. Now I need to put away and give away. Oh! My backdrop was a huge success. People thought I painted it. Everyone loved it. So, I donated it to the Alumnae Association for anyone to use.
I should also be Fall cleaning, but no, I'm trying to take a nap. I'm think I'm in a weird place over this change of doctors and treatments. The fact is I'm bummed about it, and yet I'm inviting friends out to lunch to celebrate. Have fun figuring that out.
Be well all. Enjoy your Springtime Terre. I hope to check in later.
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Hi all,
Dune - Wishing you the best with Ibrance. Too bad you're losing your fantastic nurse but hope the next one is just as good if not better. I understand being bummed about changing - I am too about my Onc going on mat leave again. But I tell myself that a new pair of eyes may be good. And we adapt, plus we have so much knowledge from these boards that we keep them on their toes. Glad your reunion went well. Fall cleaning? forget it. Go out and celebrate - it feels so good to be surrounded with friends we love and have fun with them. I hope you have a good month's break.
Deanna - that is scary! It happens so quickly. Since my fall in early September, I go out with running shoes and my cane. I don't want this happening again. My ankle and hip still hurt. Take care - don't wait too long if you have lingering pain before investigating. My sister spent the week-end with me and she had these very nice Ecco brand shoes. We have the same size so I tried them on - how comfortable while being elegant. So I ordered a pair online - can't wait to get them.
Lindalou and Annie - you ladies rock with your concerts! Linda - that's a beautiful pic. The leaves here in Quebec are really beautiful.
Dee - I hope your back is feeling better. When I had the first round of rads to my pubic bone, I had a burning feeling weeks after and the skin turned blue/black and peeled.
Amy - good luck with your MRI and I hope you get positive results.
Aurora - still praying for a successful surgery with a speedy recovery. I hope you're not too nervous and lined up some help for when you leave the hospital.
I had a very nice and busy Thanksgiving week-end. Also went for brunch yesterday with friends. Kind of tired and slow and achy today. Tomorrow, we will be celebrating the birthday of my BF's mother. She turned 96. That woman is unbelievable - no health problems, walks straight without a cane or walker, has all her marbles and is always in a good mood and fun to be with.
Wishing you all a good week! and hugs all around.
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Lindalou What a beautiful picture. The colors are sooooooooooooooo beautiful
Annie Where did you go to see Shania. My husband would like to go see her :-) I hope you danced the night away. I would love to go 'out' and dance all night like I did before. Oh OOPs that was many years ago. :-)
I would like to ask the ladies on this thread do you take calcium supplements. Is that allowed with your chemo.
Thanks all
Rosieo
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Rosieo
Yes to calcium tablets for me. My onc prescribes them when you have xgeva or zometa.
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Dune, so sorry to hear your chemo wasn't working on the lymph nodes. Praying that Ibrance does the trick and that you'll like your new oncology team.
Deanna, thank God you didn't damage anything but I'm worried about it popping when you move it. Are you going to go get it checked out? I just had our carpets cleaned a few weeks ago but I asked the guy if he could move the furniture for me and he did, no way I could do it. Last night at the concert Shania was making her way around the stadium on some kind of trolly pushed by security guards. Everyone was running down to get a close up look at her and touch her hand. My daughter and friend went down but I stayed in my seat because I was afraid of getting trampled on by crazed fans, I think I was wise to do so as there were 2 flights of stairs to go down.
Linda, how are you doing? I imagine Quebec is beautiful at this time of year.
Wendy3, dancing to Shania was a blast but it has come back to bite me in the you know what! I'm really hurting today but how do you sit still to her music? Impossible, even when I was sitting I was bopping in my seat.
Rosieo, we saw her at the Air Canada Centre in Toronto. Apparently last night was her last show of her Farewell Tour but who knows she may decide to perform again.
Here's a pic of her on stage last night, a little blurry because it was from my tablet.
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Hi Everyone, I have not checked in for a while and still have to catch up on all the posts. I just want to thank all of you for the kind thoughts and prayers that you sent my way last week when my husband had pulmonary embolisms. He is home and doing well. I have been taking care of him instead of the other way around. Hopefully, he will continue to be well. He does have to go for an ultrasound in a few weeks to rule out pancreatic cancer as the cause of the blood clots. His dr. thinks it is unlikely but wants to rule it out.
My IPAD is broken, and I am not good typing on my phone. I will check in again later and read all your updates. I am sending good vibes and wishes for good test and scan results and relief from pain for everyone.
It is beautiful up her in New Hampshire now.
Lynne
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Annie - thank you for asking. I'm fine. Neck scan is scheduled for Wed evening at 9:00 pm and I'm seeing my Ortho the week after on the 19th. I've been mulling over those spinal mets since July - can't wait to have his input.
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Freebird53 --
I'm very sorry to hear that you are in so much pain.
I will pray for you and hope that will bring you some comfort in your time of need.
Stay strong.
Sarah
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Linda, I'm praying for good results from your neck scan. I really hope your Ortho has some good input regarding the spinal mets. Hugs to you, Annie
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this is a busy thread. Lindalou, my MO vetoed Quadramet 2 yrs ago. I changed oncologist little over yr ago, she wasn't thrilled about Quadramet, then seemed to reluctantly agree. Injection this Thursday looking forward to alone time. Being optimistic this treatment will make a difference.
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I'm sorry I can't address everyone. Just wanted to say I read all the time and am keeping all of you in my prayers.
Kristin
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Deanna - What a bummer about the fall. It must have scared you real bad, I wish it does not affect you. Dani lost 50% of vertebral height then 2 mos later went up to 70% due to multifocal osseous mets! And you know her age!, its' insane, i used to always tell my children to hold themselves upright, and lately it's good I bit my tongue and when I started noticing even b4 i knew the scans results. I suspected, so i shut up. Sorry for the shock. What does 1400 WBC mean? That would be quite high no?
LindaE54- def pair of new eyes could be great. Fresh outlook. I hope we did not overstay with the EX-Onco. Agh!
Wendy - sense of humor sure helps. This bunch of ladies helped me get through a lot and terrific advice. I could empathize with what you said about being with everyone, going thru the holidays or even a bbq I keep thinking...I want pictures and pictures.... My daughter is 31, a young vivacious mom, it's just too much. I would say we try to live life well, but it's with us ALL the time now. But you are in good company here
Dee could it be some allergy to something also?? Just thinking...Is there a rash? Could it be from the treatment? Stable is something you could warm up to, when Dani was stable(back when...) at first i was so upset, but i learned very quick that it's not bad. but it was not in her cards to be.
Dune- you probably have a great group at Hopkins, keep us posted. It could be for the best
Amy good luck on the MRI
We are chugging along, this wk is an off wk, next wk is BT's again, so we'll see how this thing is going.
At night I lay in bed and in my thoughts I write a loooong letter particularly to the BIGGIE in the large Cancer Center telling him how he was dealing with a PERSON, a very much live person and how he was so calculative etc.... the idea that someone in his position was scared to give his view on tx, it's a sad day. But should I bother??? I may need him one day, who knows...But in a way I wanted to tell him WE(the people) know what he has done or not done, he looked into our eyes, my young daughter, she pleaded with him that she wanted his opinion, he said he'd get back to us, and then I found out that all the 2 docs talked about was OWNERSHIP, who would be driving THIS life. I don't know. I could let it go....I think. I just read "When doctors become patients" yep...
A peaceful night to all!
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Hi all!
Dune, I'm hoping that Ibrance kicks this cancer to the curb! Good luck!
Deanna, Good thing you didn't seriously hurt yourself, are you going to get checked out? Take it easy, (says the pot, calling the kettle black!)
Linda, Fingers crossed on that neck scan, 9pm, boy that's late. Please let us know the results asap. Worried for you.
Lynne, glad your hubby is doing better. Take care of yourself too though.
Rosieo, I take calcium 2x per day, no chemo though. I'm on arimidex & bisphosphonate infusions.
Amy, good luck tomorrow.
Annie, sounds like you had a great time. Love going to concerts, haven't been to too many, but always enjoy.
Mom, I don't think it's an allergy, I think I've just pulled something in my back & the fact that I've had radiation in the same spot hasn't probably helped it at all. I am going for more radiation on Friday & will speak to my RO about it then.
Kristin, Sue, Sarah, Bosco, Wendy, Terre, not sure who I've missed! LOL! Boy this thread takes on a life of it's own sometimes and I can't keep up.
Wishing everyone good results & peaceful nights this week. I won't be around too much this week, I'm heading to Victoria for appt's & rads, perhaps 3rd time is the charm. Cheers, Dee
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Hi all,
I'm way behind. Is it cheating to say - ditto what Dee said?
My cousins left this morning. We had a great time. And then I checked email. My dear dear friend of 35 years has just been dx with Stage IV BC. It's in her spine and ribs, no soft tissue organs. Kind of odd, they did a double mastectomy before doing a bone scan, etc. It's still not healed; it was done 15 August. All the lymph nodes were positive, so they did a PET scan. She'll be doing radiation and Arimidex. I sent her links to this page and several others. She may not post, but may come lurk.Sending love and hugs to all..sorry not to address everyone.
Terre
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Good morning all,
Deanna - how are you feeling today?
Lynne - glad to hear your hubby is home and doing well and praying he has no other health problems. How are you doing?
Mommal - Enjoy this week off and hoping you and Dani make the best out of it. Any fun plans? You both deserve a break.
Dee - Good luck with rads!
Rosio - I'm not on chemo. I started out taking calcium supplements but Onc stopped it at some point because of high calcium levels in blood due to the bone mets. It's better to check with your Onc.
Annie - I hope you're feeling better after all that dancing!
Sue - How often do you get those Quadramet injections? Is it helpful? Wishing you the best!
Terre - I am so sorry for your friend. She will be more than welcome to lurk or participate. I hope we can help her. She certainly has a good mentor with you.
Patty - how are you?
Wishing all of us a good pain free day, a few laughs and smiles.
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Terre I'm so sorry about your friend , I hate this disease so much. I hope she's doing better soon.
Deanna that's scary taking a tumble. Take care of yourself it may right itself today.
Dee good luck with your appointments Crossing all my fingers that it goes well for you.
Wishing everyone a pain free sunny fall day..
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Geez I'm pretty sure I missed Myra & of course Patty. Sorry about that. Off to help DH pour cement. I know, I know.... Dee
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Thx Dee, please be careful. Listen to your body. Myr
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Thanks to everyone who helped me with the question about calcium supplements.
What a great group of LADIES!!
Rosieo
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Hi ladies!
Sorry for not checking in for a few days!
Just didn't want anyone to worry about me. I haven't been doing anything major. Saturday was a day of cleaning, so that wore me out. Sunday we went to my friend's son's 3 year old bday party in Queens, from Livingston, NJ. It's only a little over 1 hour away but I'm done. I am not going into NYC again if I can help it in a car. I get nauseous and my back and neck hurts and my son gets nauseous. My friend is going to have to come to NJ to see me. I was feeling awful that day and Monday I couldn't get out of bed, but it was my late day at work so everything worked out. I worked late last night and then back to work early today. At least tomorrow is only half a day for me- I have to get a flu shot and bloodwork for tomorrow afternoon.
Dune- I'm so sorry to hear of the lymph node progression but enjoy the MONTH off from treatments. That is awesome. You can compare notes with Deanna and myself about Ibrance. Is there anyone else on it in this group? I can't remember.
I am so sleepy right now, eyes are drooping. Yet still have to go to the store, buy food for dinner, cook it, take care of the kids, oh my. Sometimes it's just too much.
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Had blood work yesterday for cycle 8. All good to restart, but TMs rose again. I have been feeling so well, I feel like my body is lying to me. I don't know what to think, so sad right now. New PET scan scheduled for next month. MO feels as confused as I am, so we are going to rescan and see what is going on. He has another pt. just like me. A seesaw TM and good scans. He feels scans trump markers.
Ibrance is so new we are still learning.
I hate this disease! Myra
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Just saying hello Myra and praying that your PET will reveal nothing but great results.
Amy
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Myra - Hoping you get good scan results and that TMs are just misbehaving for nothing. I hate this disease too.
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Hi Myra, my MO doesn't take tumor markers. She said they are unreliable. She said the scans tell her everything she needs to know. Hope all goes well with your scans. XO
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I know we don't swear on here so excuse me for saying damn Terre. I am so sorry - and wholly amazed at the spread of this horrible disease throughout the population in general and particularly people we know. Just damn!
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Cjanet - nice to hear from you!
Myra - good luck with the scans. Hoping the bloodwork is just a fluke and sending good thoughts your way.
Dune - I so agree. Just sucks! She's probably handling it better than I am.
Glad you're getting a month off chemo, but sad you're seeing progression. Come on Ibrance - kick that cancer crap to the kerb!Dee - wow...concrete! You go girl!
Deanna - so sorry about your fall. How scary! Let us know how you're doing.
Linda, Momallthetime, Wendy, txmom, Lynne, Sue...et al (that's so lazy of me) - sending hugs and wishes for a good day!
Terre
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Myra, good luck with the scans. My onc uses them as a guide to decide when to scan.
Unfortunately, my TMs are jumping. CA 15-3 was 579.5 before I started the Doxil. After the 1st tx - 1063.5. After the 2nd - 1841.2. After the 3rd (last Wed blood test) - 2653.5. So I didn't get the 4th tx since onc and I agree no point.
The signs are all saying SCAN SCAN SCAN.
I'll have a PET/CT on Oct 21, then new tx plan. TMs have always been accurate for me.
I hate being here in the waiting room but diana50 gave me a blankie an a teddy bear.
Clutching the bear and the blankie, Sucking my thumb.
Leah
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LeahS, I saw your Teddy Bear. So super cute and sweet. Hoping it's tumor die off. You never know, I thought for sure my tumor in my breast was growing because it hurt so bad but turns out it shrunk. I have my last Taxotere on the 21st. I'll be thinking of you and praying for you that day. XO
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Leah S how disappointing. They couldn't get you in sooner for the Pet/CT? Which tx were you on now? And what r they planning? Would a biopsy maybe help figure it out? Maybe something changed? Be safe, you are so lucky to have the blankie.
Terre you are also probably thinking of all you went through when you found out, that brings back painful memories. And to see a good friend having to go at it now...So sorry
LindaE54 i'll tell you JUST not having to run for tests or scans, is amazing! And she is actually getting her house in order and really just taking it easy, I know you guys know this best, being able to do NORMAL Mediocre everyday stuff is the best!
Myra we'll be cheering for good results.
Independent from the TM's going up with you ladies, I had heard that TM's taken the day of chemo, could affect it in a way that it shows higher, any truth to this?
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Hello ladies,
I'm new to this site and the forums within. I've been reading all the comments and suggestions and am glad to have come across such helpful, supportive people. Already I've learned a lot from reading about your experiences.
Let me introduce myself: I was diagnosed with stage IV right from the beginning and currently take Tamoxifen, lupron, and Xgeva. My family is having difficulty accepting that I have this disease and tell me things such as, "But you look fine!" Having a place where people understand what you're going through is invaluable.
It's nice to meet you all.
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