Bone Mets Thread
Comments
-
Lynne, What part of NH are you from? All of my daughters live close to S. NH- We are looking to move to NH soon. Only thing... I will never be a Red Sox or Pat's fan.. We have a family divide on this. Two of my daughter's married die hard Sox and Pat fans and they made the switch! Kind of makes for a lot of fun at times...
Deanna, I think you're right- I am in agony with this hip, leg, whatever the heck is going on.
0 -
Myra, Mallory is so precious, I can't believe how much she has changed already. I can imagine how much you miss her. She looks so content and what a beautiful smile. Thank you so much for sharing that picture.
Patty, it's a gorgeous day here today compared to yesterday, sunny and almost 55 degrees! But the forecast says it won't last, we have had a beautiful fall so far so I'm not going to complain.
Terre, how exciting you'll be in your new house soon. Lol at your moving guy, he sounds like a sweetheart.
Deanna, you inspired me, I walked today, not as far as you did but I got in a good half hour.
3-16-2011, wishing you the best with your new treatment! Enjoy your visit with your daughter next weekend.
Jjski62, welcome back, glad you were busy with living. Yes, I'm definitely one who has gone with the "need to know" route, most people have no idea what is going on with me except for family and close friends. Whenever I see someone I know I tell them I'm doing great, works for me.
Hugs to all, Annie
0 -
Terre, One month until your move? Wow, that will come quickly. I should pretend that I am moving just so I would throw out everything I don't need. How exciting. You will have to start a countdown for us and log in each day to report the number of days till the big move. Your moving guy sounds like quite a character.
LovesMaltese, I live in Bedford, NH. I like the town and have been here for many years. I grew up in Massachusetts. One of my sons lives in Westwood, MA. His wife grew up in NJ, and her brother loves the Yankees. When my grandson was a newborn, my son's brother-law dressed the baby in a Yankee uniform and took a picture without telling my son. You can imagine how much my son laughed when he received that photo. Another son lives in NY state. His wife and her side of the family are Giants fans and big Yankees fans. We enjoy giving each other a hard time. Are there any particular towns in NH that you are thinking of moving to? There are many nice towns in southern NH. There are also great areas north of here. I hope you find relief from your pain soon. I am sorry you have to wait so long to find the reason for it.
Jjski62, It is nice to hear from you. Being busy with life is the best reason of all to be absent from the thread, but I do hope you join us more often. Don't try to catch up, it is impossible. I have trouble catching up if I miss one day!
Lynne
0 -
Jjski, yes we seem to be following the same path. Sometimes it is a little bumpy, but for the most part I have been able to handle the bumps. I also get Xgeva in the abdomen. I do get SEs though. I wonder if it's because my counts are at their lowest before I start my next round of Ibrance.
50s, I too am a huge football fan, of course the Dolphins and because I grew up in NY, the Giants too.
Terre, 1 month to move in! I am so excited for you that you will be settled and now know that another move is not in your future!
Annie and Jjski, I am totally "need to know". I don't want the pity face and love all treating me like nothing has changed. When they need to know, I will tell them.
Have a good day all, I think of you all, a lot of the time, you all are so special. Myra
0 -
Myra, such a beautiful happy baby! I'm jealous
0 -
50sgirl, dh and I traveled through the states for our honeymoon. We spent some time in Salem, Vermont, and rented a beautiful little cabin in New Hampshire overlooking Lake Winnipesaukee. We even took an airplane ride too, a small sea plane that we boarded right on the lake. Omg I fell in love with it there, the most memorable stop we made, I have pictures somewhere. It was so picturesque, I've always wanted to go back but never made it. You live in a beautiful place and I have some great memories there
0 -
Myra,
Nothing puts a smile on my face faster than a happy baby. She is lovely.
0 -
Myra oh my!! This beautiful face alone should give you strength!!
3-16-2011 Vanity is the best. Mom was 95yrs old, she needed help in walking, doc recommended some type of walker, she balked at it saying walkers are for old people, she took to walking with an umbrella
Lynne - all these boys, that must have been so much fun. Hope you blessed with terrific DIL,
Linda - oh it must have been so difficult. Accept our warm hugs, but how nice for you to have him there.
jjski62 - only her siblings know of my daughter's status. It's just too much to explain all that is going on, everyday has been something else, people can't understand if they see her at the store, but she has mets all over and she takes pain meds, forget it. And absolutely no pity face with her, I had to ask that certain nurses should not even say poor thing to her face bcs she is so young, they are very nice but it would only exacerbate how she feels. I really cherish coming to this thread and be able to talk about it, and get insight and info. It's been a life saver.
.Chelle how proud you must be! they keep you on your toes I am sure. My girls are also in their 20's very close knit so it's beyond difficult situation. Their lives were totally transformed. One of them even gave up her job to be close by and available, her trajectory changed. So there is always someone there for the kids on the long days of infusion and we try to make their lives as normal as possible.
0 -
So, I just finished my 6th TH&P last Wed. I have scans on the 10th. If I have still have shrinkage, I will get more Taxotere, if I am stable or progression I will move on to Tamoxifen , H&P. I am wondering if anyone has had progression while on Taxotere H&P. When I was first diagnosed, my right hip hurt but last scan showed that I had major shrinkage and the bone was regenerating (and I now have no pain), however, about a week ago my left hip has started hurting just at night when I sleep. I'm a little worried. Thanks so much for your help.
0 -
txmom, I get alot of hip pain at night when I sleep. I think we don't realize we're over compensating for the different areas of our body that have pain or have been compromised by the mets. I can't answer regarding the TH&P but I'm sending positive thoughts that it is not progression, especially since it worked so well for your right hip. Try not to worry, I know it's hard. Sending you hugs, Annie
0 -
The frustration with bone mets is even after they heal, there's other causes of pain such as arthritis. So while healing is good it doesn't always resolve the pain. I have healing mets in both hips and yet my left hips kills. Same with my shoulders but it's only my right shoulder that hurts, so I'm on some pretty heavy meds just to get through the day. I know my post doesn't sound very encouraging but I try to not let pain stop me from doing the activities I love.
I hope your next scan shows continued healing.
Amy
0 -
Blah cancer can suck it. Thanks Amy, hopefuuly healing and no progre
0 -
Amy, you're so right. My last scan showed all my mets healed but let me tell you the one on L5 gives me so much trouble. My onc said what you said that sometimes the area ends up with arthritis, especially if you had rads to it which I did. It's so frustrating to know that something is healed but can still hurt so much. Like you I try to not let is stop me from doing anything I love to do.
0 -
I don't have pain from my bone met, but arthritis is killing my hands. The areas where the thumb bend/moves and both of my forefingers are trouble sources. Alleve generally does the trick,but sometimes , nothing seems to work. Funny to be grateful for arthritis
0 -
Good morning ladies!
I'm going to have to start getting up earlier or something to keep up with this thread!!
My weekend: DH and I are still struggling, and he was working all weekend on real estate. What I did was Saturday I took my son to a party at 12:30 pm. I had a friend watch my daughter and I dropped her off before I went to the party. I was exhausted just doing that simple party!! I spent the rest of the day home with my son, he played w the neighbor boys a little, came home for dinner and TV, and then I cuddled him to bed, my favorite thing to do!! Then Sunday, I took both kids over to a neighbor's and drove 1 hour to my friend in NY. We just chatted for a few hours. I desperately miss her and she wants me to move to where she is! But Westchester County is even more frighteningly expensive than where I live in Essex County!! It was SO nice to catch up with her. But again, the pain was there. Here I am today, back at work, taking it easy as today is my late day and I accidently came in my normal time of 8:30 am. OOOPS! Silly me. We are handing out candy to the patients today. We have 4 shifts of 18 patients each and already handed out one shift. Just to do something nice for them.
I take Xgeva every month. I have not noticed any side effects, perhaps a headache, but I make sure to drink lots of water the whole day.
So in the past 2 days, now into the 3rd day, I have had pain right where my breast tumor used to be in my left breast. Anyone have any idea what this might be? Kind of freaking me out. I do have an onc appt next Monday.
Enough about me...
Aurora, glad you are healing in rehab! Sorry it gives you the creeps but it's necessary! Sending healing vibes.
Kendra/Valerie- so glad to finally hear from you and glad they found no fracture and no mets, what a HUGE relief.
Dee-gorgeous garden!
Dune-lol you are famous! Definitely I think pet therapy is awesome! I would love a dog but don't want the responsibility right now plus DH is allergic.
Chelle- what gorgeous foliage. Here's a tree from my neighbor's house I took with my Iphone and then one he send me of the tree in the back yard.
0 -
Dune-I did not read the post before your photo! I am so sorry for all the breathing problems, but I see you are now on Ibrance- I am too, so if you need any help, feel free to post in the Ibrance thread or even ask me if needed.
I also forgot to welcome the new ladies to the thread, welcome Tammy and Maine! But Loves, Chelle and and Wendy are also new too, right? I am going to have to write up a word document to keep track of all of these women, I am so not good at names.
Deanna, I want to make sure you have my name and address in your address book. Let me know if you don't.
0 -
Cristina, my breast tumor hurts sometimes. My last scan showed it was shrinking. My MO said its probably shifting around in there.
Ur weekend sounds nice overall. Love the fall leaves, I miss them.0 -
Geeze Amy - we match! My left hip and right shoulder are the bad actors, but it's all about arthritis.
Txmom - don't have any answers for you but sending good thoughts your way.
Annie - good thoughts to you too!
0 -
Just sent out the revised contact list for us. Some of you got it twice b'cuz I was doing it too fast, and when I noticed that the subject headline had been cut off on two or three of them, I resent them w/a proper subject line, so that you can find it. Another dup looks like it was just my chemo brain. But if you sent me your contact info' and didn't get one, please let me know! I wouldn't be surprised at all if I inadvertently missed someone. And Cristina, yes, you are included.
Annie, I'm glad you're walking too. I feel so much stronger just in the few days since I re-committed myself to this. Only did 1/2 hr. this a.m. because I didn't get out early enough, and the heat is an issue for me. But I'm determined to keep at it and will try to get out there earlier.
I hope everyone's week is off to a good start! I see my local onc on Wednesday for labs and Faslodex shots. Lots of other non-bc related appts. this week too. Feeling grateful I'm feeling well enough to care about those other "normal" things, like hair and a luncheon. Deanna
0 -
Thank you Deanna! Good luck with all the appointments.
0 -
Thank you Christine.I have an inhaler from some time ago when I used to be going to qo quit. Tomorrow. Always tomorrow. Any thoughts? I used them in bronchytis. What were the results from their use?
0 -
Wow..we must have all posted at the same time. Beautiful tree Cristina. Glad you got to have some good family time, but sorry you hurt.
I get pain where my tumour was sometimes too, but the scans say all is well. My MO in the US said it's to remind me that I've had a trauma. Like I need a reminder!
0 -
How frequently are scans done once you are in treatment? I had a baseline PET scan today (my last one was 6/2013---clean). I had chemo on Thursday so I am not sure what it will show. CT/MRI showed pretty clear lesions in my spine but nothing in soft tissue was seen.
0 -
Maine, my onc does scans every 3-4 months.
0 -
Thanks Deanna for all of your work on the contact list. Great idea. Hope your lab is good and that you can continue on Ibrance,
Maine, I get scan, mostly MRI's every 3-4 months.
Terre, trauma is right! love it.
Dune, What's the status of your wheezing??
I got my first Xgeva shot today since I can't take Zometa anymore. There was a man next to me with prostate cancer ( he was cute too) who was getting the shot as well. He was quite colorful and kept me laughing. Then the nurse gave us Halloween candy for being good! Christina I thought of you handing out candy. Hoping the SE's are minimal to none with Xgeva.
0 -
hi maine,
After my initial rads to my bone met, I had PET scans every 3 months. After 2 years of NED, we moved to every 6 months, as my mo wNted to limit radiation exposure. Of course, if I ever have pain/symptoms, we'd scan earlier than the 6 month mark. I do think the scan frequency varies based upon your unique situation and your mo's feelings about it.All the best to you.
0 -
Hm, I am afraid that I might be the most resources saving patient on this board. I am not given the expensive Ibrance for my first line treatment. I am put on Zometa instead of Xgeva which is more expensive. My blood work now only includes 4 or 5 items. I see my onc every 8 weeks. And, I am having CT and bone scan every 5 months. Haven't heard my onc ever mentioned PET scan. Is my onc working for the insurance company? Speaking of the differences between Zometa and Xgeva, I checked and figured out some. Our bones have two kinds of cells. One is for making the new bone, the other is for removing the old. Zometa works by supporting the bone cells that are responsible for making new bones with more calcium, while Xgeva works by inhibiting the bone cells that are responsible for bone removal from hollowing the affected bones and shedding calcium into the blood. My first thought is that they are probably equally effective. My second thought now is however in theory and logic, Xgeva probably gets the results faster!
0 -
Xavo,
I am a pretty "cost saving " patient too. I am on no bone strengtheners at all (16 Aredia tx over the first 2 years). I see my mo every 6 mo's., and she doesn't do tumor markers. I swallow generi Femara every night and that's it. I do have PET scans every 6 months. More is not always better and I've had 4+ progression free years, so I have no problems with my "minimal" care.
Caryn
0 -
Oh, Caryn, you should know how much I wish I were in your shoes!!!
0 -
xavo,
And you should know that I wish I knew exactly how I got to be such an outlier, so I could pass it on to everyone else ❤️.
0
