Bone Mets Thread
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Right, it makes sense...hormone profile also...thank you so much. Now, it's wait and see. I'll do my best to post when i know something. Thx also for the tip, let me try...Good luck for you. I've been reading quite a lot of real good books on the subject, i wonder if i should post someplace, some are accounts from real people, some even humorous, some about life from a doctor's point of view,,,should i start a new thread? Take good care.
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Good evening Ladies...Well today was my first day on my new treatment journey of Faslodex...I also got some hydration also...I always feel energize when I get fluids....IV in me...2 shots one in each butt side...The nurses were in Awww of my Tattoo on my lower back...
Well Question any ladies here on Faslodex...and how is it going for you ...Also..how long has it been a positive treatment for you...
Changing treatment is scary...was on IV Taxol...for about 5 mths...markers and counts were jumping up...and also they could never give me a high enough dose...cuz when ever they tried to raise the dose...my counts would get lower..so that is why the change in treatment...
Still I'm a little nerve shaking...changing treatment...since being dx April 2014...just makes me worry...but I'm in trust of my OC...and he is always on the level with me...
Also found out my OC's nurse who I adore...is leaving...it was sad...tears rolled...but she is just going to be down stairs..working more one on one with lung cancer patients...so she kinda got Promoted...Congrats to her...but I'll miss her deeply...We could relate and talk openly....
Well going to hit the sack...see if I can sleep...Love to all Carla
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Hello to all,
PattyPepper I sure hope you're feeling better and wondering if you're still in the hospital? I had an incident in March of this year where my family had to call 911. I was vomiting violently and also had the big D, dehydrated almost instantly, passed out and fell to the floor. Scared the heck out of my family. It took a week to feel normal again so please rest when you're home.
Linda, praying hard that it is not onj. What a crazy side effect to have from a bone building drug, it seems so strange to me. Hoping we never have to deal with it.
Hindsfeet, praying for you to have a successful outcome from your surgery. Our thoughts are with you for a speedy recovery and gentle healing.
Freebird53, hoping faslodex is the treatment that works for you and with minimal se's.
Momallthetime, prayers for your daughter and hoping the doctors can find a successful treatment. She's so lucky to have you!
Feeling very tired so going to say good night and hugs to all, Annie
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It sure is hard to keep up with you ladies!
Patty - I hope you are feeling much, much better. ((((HUGS)))) that must have been very scary for you and your family. Are you still in the hospital? I echo Annie to try to rest when you get home as much as possible. I know it's hard this time of year.
Romansma - Ugh those SE do not sound good. And they started so quickly! Did you onc say anything about the SE getting better after the first round, I know that seems to be true on some of the other drugs. I suspect that Zeloda will be in my future some day, hopefully I can stay on Gemzer for a while, but I'm interested in everyone's experience with it. How many pills do you have to take a day? It's quite a lot, yes? I would be worried about swallowing all those pills. I recently switched by Calcium supplement to a chewable as I was having a hard time swallowing it.
ONJ concerns me too. My jaw hurt after two Xgiva shots, so I did not get the third, should have gotten it beginning of Dec. But jaw has continued to hurt, on and off, and a very low ache/pain, but I wonder if I need to see anyone about it or do anything about it. Seems quick for such a SE after only 2 shots also.
Annie, I know this was ages ago, but I'm so glad you caught your onc. mistake! Seems like quite a big one to make to order a completely different drug for you? I like the nurses best that tell me what each bag is that they are hanging, but I've not been in the habit to actually read the name of the drug on the bag. I know they need to check with another nurse before they give it to me,
Busy week with two church events and two concerts. Glad I am well enough to attend them all. Tomorrow is the one night with no activity, looking forward to that.
Hope everyone has a good rest of the week.
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Hi all...I'm way behind...so basically...what Annie said goes out from me too (is that too lazy?). Sending good thoughts to hindsfeet. Patty - hope you're on the mend. How terrifying!
ONJ..yup, I have it. Amazingly painful. I had a tooth break and they had to extract it after about 7 months of Zometa treatments. And the jaw bone came through my gum. It was the back bottom tooth...hurt to breathe (air over it), eat, drink, etc. Didn't lose much weight, unfortunately, but it hurt like hell. Took a while to clear it up as well. And apparently because I'd had numerous treatments, it's basically forever for me, so I get my teeth cleaned every few months and have a standing prescription for antibiotics. Hope you don't have it!
Two more days, two more days, two more days! Then I'm basically off work (at least no commute) until 12 January! Yea!!!
Hugs to all...hoping for good scan, blood test, tumour marker, etc. tests for everyone and quick healing to Patty and hindsfeet.
Terre
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Terre, is your necrosis on the top or bottom?
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Good morning all!
PattyPepper, Hope you're feeling better soon!
Linda, it's one big fear I have about being on bisphonates, hope it isn't.
Hindsfeet, hoping for a quick recovery for you.
Freebird53, fingers crossed that this treatment is the one
Anyone that I missed, hoping for pain free, side effect free week.
I'm off to Nanaimo for my bone scan today & then down to Victoria to see the onco tomorrow for all my results. I can't see my TM's online today, so that will be a surprise as well. I hate the waiting. DH & I are going to make a little holiday out of this trip, we're staying at a nice hotel instead of the lodge & having dinner tomorrow night at the Empress Hotel in the Bengal Lounge.
OMG, it worked!! So if it's good news, we'll be celebrating & if it's not good news we'll be enjoying the evening out while we still can.
Won't be on here much this week, so please everyone take care of yourselves & don't do too much, Christmas isn't worth ruining your health over. Cheers, Dee
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Dee, It looks beautiful, enjoy and best wishes on the results.
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Hoping and sending positive vibes for happy results for you, Dee, and a celebration dinner! That place looks very classy & beautiful!
Hindsfeet is actually going into surgery this a.m. Please keep her in your prayers!
I'm seeing my onc this a.m. for the results of Monday's blood work. Fingers crossed that Anastrazole is still working!
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Prayers to Hindsfeet and yourself Deanna.
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Hi all,Went to dentist this am, it's not ONJ. Most probably sinus infection. Dentist says that ONJ can occur only if there is extensive dental work or tooth pulled out while on bisphosphonates. Xray was clear.
Hope all you ladies will get good results and praying for Hindsfeet.
Linda
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Per her daughter, Hindsfeet is out of surgery and doing well. I'm sure she'll update everyone and be happy to know you were praying for her when she's back on here.
Hooray for your great news, LInda! I never get over the irony of saying, Yay that it's only something in another life we never would have wanted -- like Yay for a probable sinus infection!
My onc appt. went great. TMs were up ever so slightly from last time (77 vs. 75), which seems insignificant to me. Of course it would have been nicer if they'd fallen more, but after a week in LV where I got totally away from my healthy diet, I'm happy with virtually no change! Thank you for the prayers and good wishes.
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Deanna - glad that your TMs are stable. Have you made up your mind as to whether you will have a scan in 2014? Thank you for the update on Hindsfeet and glad she's doing well.Linda
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So happy for you, Deana, good luck on the rest results. My daughter was on Anastrazole, it was too strong for her, nice to hear it works for some ppl. Anniecokey, thx for your very warm comments. Dee, let's hope for good news. Very smart about the hotel stay, good for you.
My daughter is scheduled for monday. I don't even know what i expect. I guess that it gets us to the right direction. amen
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Deanna,
Very happy to hear of a good visit with you mo. The tumor marker numbers seem so slight as to be insignificant. Thanks for keeping us updated on hindsfeet. Will keep thinking positive thoughts for her.
Caryn
PS: all my best to everyone else. I am stretched a bit thin on bco and don't always remember to address each one of you, but I'm still thinking of you. No, can't blame it on chemo brain but keeping track of my 24,6 and 7 year olds keeps my mind on permanent overload.
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momallthetime, I hope your daughter's procedure goes very smoothly on Monday. This is the bone biopsy you mentioned earlier that Caryn and others explalined the importance of doing, right? I have a son your daughter's age, and I can only imagine your fear and concern. Just out of curiosity, is she being treated at or has she been to an NCI-designated cancer center? The very fact that someone is doing a bone biopsy sounds very promising, as hopefully it will divulge some additional information about her tumor cells that will be key to finding the right drug(s) for her. I'll be thinking of and praying for you both, especially on Monday. Deanna
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Hi Deanna, her onc had a private office till now in NYC, but obamacare cut her profits and she had to join the hosp she was part of. It's a major Hops in NYC, they have a cancer center. She is truly mystified with the aggressiveness of the mets. So, we wait.
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Hi Everyone. "Scan Results"
Thought I'd report my PET/CT findings from Tues. I've been having a lot of pain in my left ribs over the last 2 weeks. The scans showed I have a fracture of my 6th rib.(did not fall). The only bone mets showing up with more acitivity is T11, which was on my prior scans. The lymph node is also increasing in activity--not sure if it's because of the radiation I had. I also have a new lesion in my hepatic lobe thats mildly active with SUV of 4.6. (not sure where that is)
I'm in for Zometa on Friday but my doctor is out for the rest of the year. I'll talk with his assistant who will probably call him on the findings. Not sure if they will take me off of Aromasin & Affinitor. My scans have not been clean for over a year now.
I hope everyone has a wonderful holiday season!
Terri
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I pray to God Femera puts my Bone Mets to sleep.I just started taking it three weeks ago. The pain from my unbearable Bone Mets. Maybe you should go back on it.
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Missing Alle,
Femera worked for me for 4 years, I doubt they would put me back on it. Maybe faslodex. I seem to be getting closer being back on chemo.
Terri
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Hello ladies, I was hoping for a little advice.
I have pelvic mets only but for the last 3 weeks or so have had increasing pain in my left sacroiliac joint. I spoke with my GP today and he is sending me for a injection in the joint. I queried if it could be mets but I had a bone scan in September so he doesn't think so. My question is can you get mets in the joint and is it possible for mets to develop since September. I see my oncologist in January.
Thanks
Jennie
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Hi all...good news about Hindsfeet. Deanna - tumour markers seem stable to me; + or - of 10 to 25% isn't uncommon with lab procedures. I'm happy for you!
Terri - I'm sorry you're facing more challenges. Fractured rib has to hurt like heck.
Linda - so glad it's not ONJ. My understanding was that it only happens with major dental procedures, but I wasn't 100% sure.
Jennie - I'm guessing it might be possible, but not likely. You don't mention which meds you're on, but I believe that several of them can cause really sore joints. I get cortisone shots for my knee which has arthritis, but it's so much worse with the Femara. I'm sure the others will have more info about mets in joints.
Missing Alley - good luck with the Femara. Several of us have been stable with it for quite a long time!
Hugs to all,
Terre
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I've had bad arthritis in my knees from Femera, the joint pain was terrible. I went to an orthopedic doctor that said early arthritis and gave me a cortizone shot that worked well. Aromasin has not been hard on my joints, but does not seem to be working even with Affinitor.
Terri
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good morning ladies. I am home from the hospital. Got home around 9pm last night. Still feeling miserable but I begged mo to come home since it's so close to Christmas - he knows my kids as well- Since I am now able to keep down liquids I can take the meds orally. He agreed. I still feel miserable but on the road to recovery. Thank you so much for all the support from you ladies.
Dlb - good news with your tumor markers yea! Did you find out about your scan as well ? Thanks for keeping us updated on hindsfeet.
Hindsfeet - prayers for quick healing
Linda - not onj. Yes !
Ibcmets - fractured ribs can indeed be painful. Hallelujah it was not progression !
Gg - best of luck on your bone scan and tm results. Hope you and dh are celebrating during your little holiday !
Kiwi - no work until 1-12. Awesome ! Hope you rest, relax, rejuvenate
Momallthetime - what an awesome mom you are. Your dd is very lucky to have you. Praying for easy bone biopsy for dd Monday. Has your dd posted here ? I know you said she is focusing on her dd's. I have def found huge support, hope, information, laughter etc from posting on bco, maybe she would also. It truly has been my lifeline.
Freebird - hope the falsodex works for you. I haven't had it but hoping its way easier on you and more effective than chemo. So now you got me wondering : what kind of tat on your lower back ?
Exbrnxgrl - is this the last week of school before Christmas break for you ? I bet your students are major excited for Christmas. Isn't that excitement so contagious ?
Missing alley - welcome. I hope your femara experience goes as well as mine has. I have been on it almost 1 1/2 years. No progression. Very minimal side effects.
Whew I think I am all caught up. Sorry if I missed anyone.
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Good morning ladies,Patty - wow you're home! Take it easy and let hd continue his excellent work... I love reading your posts and how you catch up with everyone.
Terri - Yeah, that fractured rib must be painful. Hope you get more answers tomorrow. Just curious, have you ever been on Tamoxifen? Will be thinking of you tomorrow and sending you good vibes.
Dunesleeper - are you OK? Have not seen you on this thread for a couple of days. Miss you!
Terre - enjoy your well deserved break!
Jennie - very likely that your joint pain is from hormone therapy. That's one of the lovely side effects.
GG - Hope you enjoyed your little holiday and good luck with your tests today.
I had rads to pubic bone on Tuesday and happy to report that I am pain free in that area! Sometimes I think rads were invented for me....
Hugs to all - Linda
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Good morning,
PattyPepper, so happy you're home. Please don't push yourself, I had that in March and it took me over a week of rest to feel somewhat like myself again.
Deanna, awesome news on your tumor markers. If you do decide on your scan when will you have it done?
Terri, so sorry to hear about your fractured rib, ouch! Praying that whatever treatment comes next gets you back to NED. You did so well on Femara for 4 years, I hope they find something equally as effective for you.
Dee, hope all is going well and you and dh are enjoying your little get away.
Dunesleeper, where are you? I'm with Linda and noticed you've been a little quiet, I hope all is well. Please let us know.
Linda, wow rads worked fast for you and it's great to hear you have pain relief. I wish I could report the same but I seem to be having a major pain flare, especially in my L5 and humerus. Sternum rads gave me some esophageal issues which are settling down but boy I'm hurting. Wonder if this is the tumor flare pain they talked about? I am so achy and my legs are aching something awful too. I hope it passes soon.
Hindsfeet, thinking of you, glad the surgery is behind you and prayers for gentle healing and a speedy recovery.
MissingAlley, I'm with you, hoping the Femara puts your bone mets to sleep along with mine and anyone else who's on it. So far after 3 months my tumor markers dropped from 137 to 65. My onc said that's a good indication things are heading in the right direction.
Wishing you all a great day, hugs, Annie
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Annie, the first round of rads to pubic bone was very painful. The pain was bad before the rads and got worse for a good 3 weeks after tx. They had warned me about the flare up. Then slowly the pain subsided. Don't give up - the flare up is not fun but you will feel relief soon. That's quite a drop in your TMs after only 3 months!
Linda
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Linda, thanks for your reply. I must have misunderstood, I thought you meant you had rads done Tuesday and already had pain relief today. I didn't realize you had already had rads to that area. I'm so happy it has helped you! Today I am really struggling, had plans to get some stuff done for Christmas but I think I need to lay low. The met on L5 gives me the most trouble, it's an area that supports our upper body as well as lower so being right smack dab in the middle it's creating a challenge for me. I have MS as well so sometimes I think that complicates things for me. One day at a time I guess. Thanks for your support!
Hugs, Annie
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Happy to hear you are on the mend, Patty. Linda, so glad it wasn't ONJ! Terri! I hope you get some answers soon...it's so hard to relax until you know the plan. I will be taking my last dose of Xeloda this morning to finish my first cycle. Looking forward to having the week off. The nausea is building. Took 1/2 Ativan a couple times yesterday and it seemed to help without knocking me out. Looking forward to a festive week
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Glad your markers are down Annie. My spine was sore for a few weeks after rads, but it's pretty much fine now.
Romansma - glad you're nearly done with this round of treatment and going to get a break!
Hugs to all,
Terre
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