Bone Mets Thread
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Hydranne- so sorry about the recurrence but glad you are retiring. It's a good reason to retire and I hope your days are filled with peace.
Jazzy- thanks for the cream referral!! I appreciate it. I will see reviews of it before purchasing.
Karenmarie- I tend to overreport pain but that's just me. I'd rather the oncologist know all of my symptoms than less.
Dune- I'm sorry about that cough. I really hope it dies down and you are able to check in later with us!
Wendy what a beautiful horse!
Stefajoy, thanks for the study information on Keytruda.
I hope everyone is having a good day and I hope to hear from the others.
I'm struggling, what else is new, DH is not bringing in any income with real estate but always busy- how does that happen? I've told him I've had it with him and I'm at the end of my rope. Dude, your only job is to support your family. It's all I ask. I don't ask for more than that. I suggested even part time holiday work at Home Depot!! Anything! And you can't even do that, plus you make demands of what I should do on top of all that? DH always says to me "the least you can do..." and then follows with a demand of what I should do to help out even w all my pain.
The idea I have in my head, is to take a little break and perhaps take a 2-3 leave of absence from work and stay w my sister in N Carolina after the holidays. I'm trying to get through the holidays in one piece. What I'm thinking is asking his father to come and stay in January for a few weeks to help out, something the father has been considering.
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LindaE- scans showed lesions to right ribs but never mentioned size etc. I broke my 9th rib and they did rads there but this is more to the side of my ribs in line to where my bra buckles. It has been on and off there since August. I am going to find out next week when I get new scans. I have only been feeling like waves of heat there but who knows.
How are you feeling today? Is your sister still with you?
CJanet I think you do a great job working and handling everything. I hope you will be able to get away like you want too. Real estate is tough stuff. I feel you're frustration.
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Loves - My sister left last night, it was really a nice week-end with her. I'm getting better but it's a slow process. Can't wait to have more energy.
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Ladies first of all, a wonderful happy celebration of Hanukah! We are gonna have a get together on Sunday brunch, with latkes(the delicious fried potatoes),oh i wish I'd know my mother's secret. She made them salty, oily, and perfect. I don't go much into the gifts, bcs it becomes too much, the little ones get their wishes(of course, a doll here, a toy there), but the adults play the dreidel and if you win, nice, get something for yourself. I make it simple.
I was down for 2 full days, just like that. Dark room, a toast, tea, and nada. No tv, no beloved books, it was not the flu, but "something", I am still a bit dizzy today, but Dani called if I could take over she's gotta go doc. So like yeah, of course!! Hmm, hope I get where I have to get. Not sleepg at nt,does not help.
Anyhow, Hydranne, it must have really hit you, good luck w this new med, yeah it's quite interesting.
Karenmarie, for sure you should get the Onco involved, see whar your next step should be.
LovesM- how about asking for a sonogram or a CTscan, maybe one of these modalities could be sensitive to your stomach aches. Don't like much the sound of how you feel.
LindaE- oh so nice your sis is there, enjoy every minute.
Amy, so sorry you are going thru such hardship, hope the mouthwash helps you real fast. It's a very sensitive area.
Lynne, what great pictures! It shows how proud you are, didn't even notice the nonflash! Iluminate!
Mary- outspoken, it's precious! She is a cutie!
Myra - so sad that you are sad. Hope the lights of Hanukah will infiltrate your life
Beth it's crazy that you have to deal with this, do you have issue with sugar bcs of the transfusions? My BIL has probs with PLT so he goes all the time but has to watch the sugar levels.
Oh Wendy looking at the beautiful horses makes me cry. What a lookers! Horses are so loyal, I am sure they are thinking of you too.
I feel so bad if I overlook someone, I probably did, please take care everyone!
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Hello!! A huge thank you to those who replied to my question about hormone therapy. I guess I should have been more specific about the therapy regiment my new onc suggested. I took Tamoxifen for five years after a bi lateral mastectomy, chemo, radiation in 2008 and was extremely fortunate to have very few, if any SE's. However this time around I'm a little nervous having read up on this combo of zoladex, letrozole and Ibrance. I know that there is a variance in how we are each affected and it doesn't mean that all the symptoms will show up in me but I can't help but feel a little concerned. Still pretty new to this and trying to figure out how to navigate around this second diagnosis. Sleep is the most difficult thing for me to manage right now. It's always in the wee hours of the morning when it hits me and sends me churning. I've tried using the CBD oil from my local dispensary and it helps to take the edge off and I can relax but it doesn't keep me asleep for more than four hours at a time. It's a vicious cycle, as I'm sure a lot of you know. Without adequate rest, it adds to the already heaping mound of problems. But I do my best to stay as positive as I can. I'm grateful for my amazing husbands support, family, friends and this forum for resources, encouragement through the community that all of you have built with kindness and strength through words.
I wish everyone a peaceful, restful night.
Karen
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Hi all, Have a break here since the radiation machine has been broken the last couple of days. Always makes me nervous when machine breaks, hope it doesn't screw up or anything when they resume.
saucychiq, I was on the Ibrance/letrozole with no sleep issues. I agree you need to resolve the sleep issue since lack of sleep makes everything worse. Seems like there are a lot of meds that help you sleep, you should make sure your oncologist or palliative care helps you with this asap, they should be able to do something.
LindaE, hope you are getting much needed rest.
Wendy, thanks for the beautiful pic, love the pony and the scenery is gorgeous, makes me want to get out there in the field.
Steph, thanks for the info on keytruda, very interesting!
Myra, hope you have good luck with the Xeloda and that it is gentle on you.
Going to my appointment today to see how they will inject cement into my spine in 3 places to fill in the gaps where cancer took it away. Hoping I can get the rads and procedure (outpatient, but under anesthesia) done and over with and have relief for the holidays.
Thinking of you all, have a great day and wishing you lots of peace and joy over the the holidays.
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Good Luck 3Holly with the cement and the rads and hoping it brings you tons of relief!
Thanks everyone for being there for me! Just want to say that, don't want to dwell on the negatives, thinking again of visiting my sister in January, just me by myself though, might be fun!
Everyone have a good and pain free or low pain day!
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Good morning all,
3Holly - I'm sure they will not use that machine until everything is fixed. Will be thinking of you today and holding your hand in spirit.
Karen - I agree with 3Holly, ask for something to sleep, it will make a world of difference.
Cristina - I think a visit with your sister is awesome! It will be a nice break for you, you deserve one.
Mommal - So you were out of it for 2 days huh? I hope you can find the time to take care of yourself with small little pleasures. You and Dany are always in my thoughts and prayers.
How is everyone today?
I'm feeling much better, have resumed walking yesterday and feeling much stronger.
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3Holly- My rad machine was broke yesterday too! National Rad Machine break day!
LindaE- I FEEL BETTER TOO!! NATIONAL FEEL BETTER DAY!!
Stomach cramps were barely noticeable this am! This is the first day in 9 days! Hopefully it was a virus ... MO thought it was the Ibrance and they also didn't rule out the rads but I had a 4 day break from rads and it still was there.
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Hi Ladies! Hope you are all doing well and the mets are causing little and no pain. I am a few days behind catching up and hope to read through your posts today.
CJanet - for psoraris on my scalep ,I use medicated Selsum Blue shampoo which is over the counter and seems to help. I'm dealing with bad ecsema all over though and I need a rx for it.
A bit of good news on my mom as she finally has treatment plan since she found out she is HER2 negative so no chemo! She is ER+/Pr+ same as with the first cancer. She has ten rounds of radiation to her hip to shrink the tumor, She switched from Tamoxifen to Anastrazole and is also on the Zometa to strenghten her bones. She will also start today with Falsedex every 2 weeks for 6 weeks, then monthly. Hoping that this concoction of pills, shots, and IVs can get her stable and strong very fast. To anyone that has started this similar regime, feel free to give any input you may have and what to expect.
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Hi everyone, I hope you all have a good day.
Daughter, I am glad that your mom has a treatment plan in place and has begun receiving tx. I felt like I could begin to breathe again when I took that first pill. I am taking anastrozole and Zometa, too, but not faslodex. I have had a very good experience so far with the two drugs I am getting. Hopefully, your mom will also do well with few SEs.
LindaE and Carol, It is good to hear that you are beginning to feel better. I hope you continue to improve and regain strength.
Cristina,a trip to visit your sister sounds wonderful. Just make sure you relax and enjoy it if you do go.
Momallthetime, I am sorry you were sick. You need to spend some time taking care of yourself so you don't get run down. I know you are always thinking about others, but you are important, too. Pamper yourself for just one day.
Holly, I hope your treatments go well and you enjoy the holidays. I have to as because of your name, do you have a birthday this month?
Karen, do get some help for sleeping. Being tired takes a toll on all of us, physically and emotionally.
Myra, I hope your new medication gets you to NED. Actually, I wish that for all of us.
Terre, It sounds like you are traveling a lot for business lately. I hope you have time to relax in your new home soon.
My dh's appt with the first specialist is at 8:15 a.m. tomorrow in Boston. Rush hour traffic can be awful heading down there, so we decided to drive down tonight and stay in a hotel. We can have a nice relaxing night there and not worry about rushing around tomorrow morning. Next Monday's appt at Lahey is at a better time and a bit closer to NH. We are anxious to hear plans from both doctors.
I know that I have not called out everyone that I should, but it is hard to keep up. You are all in my thoughts and prayers.
Lynne
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Thanks 50s grl - glad you are doing well on similar treatment. I live in Boston and agree - morning rush hour is a bit insane. Best of luck at your DH's appointment and hope all goes smoothly.
I had an appt this morning and the doc re-confirmed no mammograms until I'm 30 but results of genetics can change that. I am making my initial appointments next week while I go with my mom to her genetics counselling appt. Not sure if I am being irrational but I almost hope to be BRCA2+ so that I can get regular MRI's covered under insurance and have options for surgery to greatly reduce my chances someday. Otherwise, I won't have any options even though everyone in my family has had BC. I don't know, I'm likely not thinking straight about this stuff.
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loves, for no apparent reason for about 6 weeks during my 6-7th cycle of Ibrance I had stomach cramps and stinky loose stools. I had it checked and everything came back normal. Then, just as magically as it appeared, it went away. ONC thinks SE. Weird. But there is hope it's temporary.
Cjanet, go be with your sis. I feel like it's what you need.
Holly, good luck with the cement process. I am hoping you can feel good soon.
Myra, I can't say don't be scared, because I know that is unreasonable. Try not to think the worst. Youve been doing so well up until now. Probably that headache is just an SE and the MRI will put your mind at ease. I hope you are enjoying Chanukah with your family and that you get to see Mallory soon.
Sorry I absolutely suck at addressing everyone. But I follow and care about you all.
Stefanie
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Hi all, I just found this thread. I was dx 11/2014 with mets to T9,4,3 and L1,2,3. Very small. I have been taking letrozole and just had scans and no active disease. YAY. But my oncologist wants me to start xgeva. Does anyone have experience or tips on taking this? I struggle with periodontal disease which is in good shape now but I am afraid of osteo necrosis of the jaw.
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osteonecrosis of the jaw is a low incidence se. The best thing you can do is to make sure that you have any invasive dental work done prior to starting Xgeva. I would also make sure, that even when having routine cleanings, that your dentist is aware of the fact that you're on Xgeva. I have been off bisphosphonates for two years and I still remind my dentist about it every time I go. Sorry that you've had to join us and take good care of yourself
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I am leaving tomorrow for Washington State where my parents live. My father is in such tough shape from prostrate cancer I'm sure I'll never see him again. It's going to be hard to say goodbye but then on the other they think I'm the one who is dying from bone mets so then I'm not sure what to expect. Anyway, I'm already struggling with sadness and anxiety over my recent progression so I'm sure I'll be a hot mess most of the time I'm there. I guess I'll say my prayers and ask God to give me strength to be strong for them.
I hope you all are hanging in there and enjoying our respective seasons.
Hugs -
Amy
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Amy, You have so much on your plate right now. Breathe deeply and feel the strength that we are all sending to you. I hope that you find some peace when you visit your parents. It is so hard to say good-by to people we love. It is especially hard for you at this time when you are dealing with news of progression. I hope you are able to get mbc under control quickly
I will say a prayer for you and your family. (((Big hugs))).
Lynne
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Amy- I will be thinking of you. You really are so strong. Hugs.
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Hello Everyone,
I just need to vent a bit about a situation that occurred to me today. I hope no one will mind.
I use a walker and get around town on our public transportation (i.e. city bus). Today as I was attempting to board a bus, I asked the driver to leave the ramp down for me so I could roll my walker up into the bus more easily. Her response was "You don't need it, you just want it". I then told her, no I need it because I have a tumor in my spine. She then laughed and said "Yeah, I had one of those once" I was furious! How blasted ignorant does someone have to be to say such a thing? Anyway, as I was leaving the bus at the stop I needed, I said with tears in my eyes, "that she wouldn't be so flippant if SHE had terminal cancer". She made no response.
And yes I did make a report to her supervisor. Whether it will make any difference I don't know, but one can only hope.
Thanks for listening.
Tomorrow I get my Faslodex shots in my caboose and see what my WBC is to determine if I can stay on the Ibrance.
LindaE - glad to hear you feel up to going for a walk. How is your weather there? It is 60 degrees here and raining on & off.
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Amy, so sorry you are going through this, I will be praying for you try to control the stress. My uncle suffered so much from prostrate cancer, it is another awful disease, I hope this new Canadian drug trial is successful with it. My mom has been in the hospital over a week, is 87 with heart valve issue, so I am also worrying about her and my 91 year old Dad, and feel so bad that I can't do much right now after all they did for me my whole life.
Now a little comic relief - my son (basketball player) was getting excited looking down at me thinking he grew a few more inches, but when they measured me today I was only 5-6 (was once 5-10 3/4) so I had to break it to him, it was me shrinking, not him growing!
Loves, glad you're feeling better.
CJanet, visiting your sister and having some fun and laughs is a great idea, go do it!
LindaE, glad to hear you are regaining your strength
Have a good night everyone!
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Amy - So sorry to read about your Dad. Prayers for you and your family. It's so very hard to say goodbye.
Jazzy - the nerve of that driver! Not even worth giving her any attention. But yes worth filing a complaint. The weather here is beautiful and mild. No snow yet!
3-Holly - hum, I have to measure myself...Prayers for your Mom as well.
Barbara - welcome to this thread! and congrats on your good scan results. Other than what's been said about dental work, hydrate well the day before, same day and the next. Common SEs, if any, can be flu like symptoms, aches and pains for 48 hours.
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Amy I have no words, you are going thru such a difficult time. Listen, you have a good heart, it's gonna hurt, but you will have made him happy to be with him, and it will be a closure for you. Some ppl never get a chance to say goodbye.
3Holly it's comical the situation w the machines. Hope they fix it real quick
Lynne please accept my warmest hugs for best of luck, hope you like your docs over there. And you did so smart in going ahead, relax and not have to deal w the drama of traffic.
LindaE there you go girl. So happy for you. Your sister left?
DaughterL i feel that you are more at peace now that you know the plan. She seems to be on the right track. I honestly cannot tell you the right thing to do re surgery etc...but I did a lot of reading this business of mastectomies are not so full proof, you still have the chest wall, so it's not so clear cut, and interestingly my daughters have check ups, biopsies for questionable mamos(yeah believe it, they had a diagnostic done at the same age Dani's was found that was the recommendation and BAM, totally crazy "things"were found) anyway Insurance paid for a lot of it, even thou they are not BRCA1/2 +, so maybe there is more explanations you need to get from your Ins. But 30 seems reasonable to start. Talk it over with the counselors, they are your best bet.
LovesM so happy for you, enough is enough!
Karen just so you know, I went to the doc today, because I am still sleepy, and dizzy, after spkg for just 2 mins, he said of course if you don't get at least of 6 hrs uninterrupted sleep you cannot be in your best game, he switched me to Lorazepam, and said it must work, it really kept me from functioning and many physical issues arise bcs of it. See what you could do. I wake up with not good thoughts like 2 hrs after finally falling asleep and it's taking me down, So hope this works better.
GN
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Hello, All,
I am terrible addressing everyone individually unless I take notes! I'm old, estrogen deprived, blonde (really), and on too many drugs including oral chemo. If that isn't a good excuse ..............😜
Xbrngrl: Xgeva. I have been on denosumab (generic Xgeva) for over a year without any problems.i truly believe it has kept me fracture free esp my spinal vertebrae. I have innumerable mixed type of bone mets thrust my skeleton from skull to feet most in spinal vertebrae and sacrum, with bone marrow mets. I also have terrible gums (periodontal disease). I use the same drug for patients with osteoporosis but at a much lower dose only twice yearly. I have a great dentist who understands the drug and s/e. Incidence of ONJ is very low compared to the incidence of fracture from extensive bone mets. I ask patients I am going to prescribe Prolia have a dental exam and be sure they don't need dental surgery esp implants prior to prescribing any anti-resorptive like bisphosphonates or denosumab. I see my dentist every quarter with cleanings. Xgeva is given 120mg subcutaneously (injected into fat of arm or belly) every 28 days sometimes less frequently if your bone mets aren't that severe or extensive. Prolia is the same drug given for osteoporosis at 60 mg subcutaneously every 6 months. Hope this helps.
Loves - hope ur tummy is better.
All, please don't ever feel bad about reporting any symptoms or new pain to your healthcare provider. It is better to have them checked out. Your doc should always be willing to listen to your concerns. If anything bothers you report it.
Xeloda is giving me expected problems: nausea, H/A, diarrhea, body aches comes and goes. Hope I get over it soon. Monday bloodwork to check if I need transfusions.
Prayers for all, wishing you comfort , love, light.
Beth
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msparki,
It was BararaA who was asking about ONJ. I was just reassuring her that ONJ was a low incident side effect. Now, if they could only make a drug to help my overloaded brain keep up with this thread
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Lovely ladies of bco. I have not posted in quite some time. December is very busy for my family. Dh and I celebrate our anniversary on the 4th. All three daughters are December babies. 10th - 14th - 28th. Having one big party this Friday night. Middle daughter is 21!!! Should be great fun. My back hurts from all the work. But it will all be worth it! I read everyday. I pray for and love all of you. I'll be back to posting soon. Here's a pic of some of my hard work.
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Wow Chelle love it! So now you can come to Canada and do my living room ?? Now take a break and enjoy all your hard work. 😊
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Amy, Thinking of you today as you head to be with your dad and mom. I hope you get some time alone with him just the 2 of you. We will be holding you in our hearts.
3Holly, Sorry your mom is in the hospital. It is so difficult to see our parents ill.
Amy and 3Holly, remember to set some time aside for yourself to be quiet and rest a bit. Between the radiation tx's and the stress of a family illness it can take its toll. Your parents will know you are there and will feel your love.
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Lindalou very beautifully said, I am always searching for the right words and end up leaving it because the pain is just too much . Holly3 and Amy I wish you both the best and you are in my heart as well. Along with all the other woman on this thread facing challenges like super heroes.
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Hi,
I am scheduled for a bone scan, been having pelvic/hip pain for a few months and ignoring. Has anyone on here been diagnosed with bone cancer while on Tamoxifen, or an AI?
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Hi Lonnie,
Are you asking about bone cancer or mets to the bone? Those would be two very different thingsI am not in your situation, but you might want to check out this thread for support.
** Sorry, I am unable to post the link for some reason. It is called "If you are not stage IV but have questions, please post her". Wishing you the best
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