Bone Mets Thread
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Kiwicatmom: I read your post about bones hurting months after rads. I've been experiencing this lately as well. I had rads to my left pelvis about six months ago. Never had much pain in it prior to rads. Now in the last month, I've had lots of reminders that it's there. Last scan showed that the spot was necrotic. No new scans for a couple of more weeks. I've been blaming the weather changes. Some days it only twinges. Other days I can barely walk. Hoping against hope that there are no new areas kicking up. You know how that goes. So you referred to the pain as "growing pains". Can the bone rebuild?
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Waiting for the big blizzard to hit our area and my bones are aching! This is really the first time I feel like the weather has increased my pain. Supposed to go to work tomorrow but for the first time ever, I am going to put my health and safety first and not go. So afraid of falling and causing a fracture. I won't get paid and may get written up but not risking it. Hope everyone stays safe and warm through the storm, we are expecting 18-24 inches.
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Lynn stay put! I'm so afraid of falling too. We are missing the storm! Living in upstate NY this is just short of a miracle!
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Lynnwwod, I am glad you are staying home. Going to work is not worth the risk of injury. I hope there isn't much damage from the storm and that you don't lose power. Stay safe and warm. Let us know that you are okay when it's over.
Last year on January 25, my DH and I flew off to Hawaii. We just missed the big blizzard. It was really nice to sit on the beach in 80 degree weather while three big storms hit home. I had just begun to feel the pain of what would later be diagnosed as bone mets and stage IV bc. I remember hurting all over as we were flying to Hawaii. A few days of the warm sunshine and lots of Tylenol helped give some temporary relief, and I did enjoy our vacation. I feel much better now, but oh my how my life has changed in one year.
For all of you who are in the path of the big storm, stay safe. I will pray for you and your loved ones.
Lynne
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Dlb So well said. I know I slip into that dangerous game myself. I do believe what makes cancer so hard to treat is that each case is so unique.
Wishing everyone a good weekend.
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Hi all, so cold here in central Florida, no sleet or snow, but cold just the same, I can't handle going outside, makes me cough, & sinus drain.
My husband & I went to a funeral this past Tuesday during the reception my MO office called w/PET scan results. There is spot in brain, but they want to look at scans themselves & compare with MRI last month. I was so upset, we had to leave the reception so I could go home & cry. Wednesday was quite the pity party. Thursday I got up & went on as if all was ok, I surprised myself, guess I have been here too many times, getting used to it. Plus with numerous losses here & in my community... I told my husband of over 30 yrs, I am somewhat coming to peace w/ this disease. My kids ages 19-30 are doing well, self sufficient , finally got 20 y/o to get drivers license. I have an autistic son who lives independently too. I am not giving up yet, but I will not let this disease ruin my QOL. Also if u read the brain mets thread, those women are awesome & brave .
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Sue,
I admire your spirit. I understand why you needed the pity party. You are an amazing woman to bounce right back into your normal routine. I hope the news will be encouraging when all the analysis has been completed. I will keep you in my thoughts and prayers. Remain strong.
Cancers sucks, just had to say it
Lynne
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Lynn - your DH must be a happy camper being back home and the good meals and the pampering. Happy for you both!
Sue - Like Lynn said I too admire your spirit. I also hope the final results will be positive. One of my girlfriends is flying to Florida on Sunday and was hoping for better weather down your way. Keeping you in my prayers.
Good week-end all around!
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Aurora - so glad to read of the amazing improvements! You go girl!
Surfdreams - yes, bone can regrow. And having the big bones regrow hurts! I thought it was more mets, but it was regrowth. Dull ache and sometimes kind of a sharp pain. Was shocked (in a good way) to learn it was growing pains like the kids get.
Sue - so sorry to read about brain mets, but so admire your spirit. There's a couple of folks on the boards who had brain mets and are NED now, so praying for that outcome from you. And I must say, crappy enough to get news like that, but at a funeral? That's just WRONG! Wrong wrong wrong.
Lynne - so happy your DH is home. And I'll bet you're sore and tired! Lots of work. Hope the storm misses you. A year since you felt bone mets - what a year you've had. Here's hoping 2016 is kinder to you than 2015 was.
Rachel - great advice from the others..hang in there.
Lynwood and others on the east coast - stay warm and safe!
LindaE, Patty, Deanna, Dee, Myra (still reading here, I hope), Bosco, 3-16, Loves, everyone else...hi!
We went to the API show today - like a county fair. Ran into our former neighbours; he does sheep dog trials. Also saw some other friends, as well as the realtors were stalked when we were house hunting.
Watched the wood chopping contest, sheep dog trials, horse jumping, cattle and alpaca competitions. Got to pet an alpaca, which was cool. Ooohed and Ahhhed over tiny baby piglets. Engaged in the annual tradition of a "fire burger" for lunch (cooked by the volunteer fire department guys), took pictures of the sheep, saw some of the biggest pigs ever, and chastised myself (silently) for thinking "my word that looks delicious" when admiring the champion beef cow. Yes, it's corny, but it is one of my favourite events of the year. Will be doing some picture editing this weekend and put some up and post the link. Hugs to all,
Terre
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Sue-sorry to hear of your brain mets but I admire the way you're handling the news. We all must focus on living our lives well-which is easier said than done with everything we have to deal with.
Lynne-happy your DH is home. It's also been 1 year for me since being dx stage IV. And what a year it's been! Hoping we all have a better 2016!!!
Aurora- being off your orthopedic brace and having no pain is a win-enjoy it!
Although I love my MO I've decided to go for a second opinion. My BS and I have become friends and since I've only experienced more progression throughout the past year, she would like me to have a cancer sensitivity test done-which MSKCC doesn't do. So, this week I'm meeting with another MO. I almost feel like I'm cheating on my MO but it never hurts to get another perspective. I really haven;t had a treatment work for me yet. The Ibrance/Femara kept me stable for 3 mos and then I had progression. On GDC I had more progression. I don't know how I'm doing yet on Xeloda so I think I better prepare for what could happen next.
Everyone who lives in the snowstorm weather be careful if you go out!!!!!
Babs
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deanna. ((( hugs. )))
Terre. - the api shoe sounds fun. Pics please
Lindae - glad you and praline got out for a walk. Hugs sweetie
Sue. - talk about terrible timing. Boo. Admire your spirit. What's the plan ?
Lynnwood - hope your boss was understanding. S fall with bone mets could be life changing. Admire all you ladies still working. I don't see anyway poss I could do that.
50's - how sweet of you to make and freeze dh's favorite foods. Glad he is home and improving. Bet you are exhausted!
This cold weather is making my back pain so much worse and also since dss are home I have been pushing myself way to hard. They had a friend spend the night last night. His mom called early and woke me. Said his g'pa had been rushed to hospital and they needed to leave asap. So its quite here now. Gonna take it easy today. 2 more days til school starts back. I think I can. I think I can. Lol.
Hugs to all I missed
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Because I can't let cancer win...
Before this I rarely played outside in the snow. Today I was the first one out.
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Love it, Rachel! Good for you! Looks like you got A LOT of snow!
Oh, Sue, I hope that spot they've seen isn't a met. But if it is, thank goodness it's only one, and hopefully can be zapped quickly and completely. But yes, crappy news no matter when you get it, but just awful timing when you did.
Babs, I'm glad you're getting a second opinion. Clearly MSK is a great place, but it never hurts to have another onc or medical team weigh in -- especially if you can get the Foundation One or other genetic testing.
Terre, the API show sounds like a lot of fun. I sometimes forget that it's summer there now. Will look forward to your photos!
How's everyone else in the East doing today? I hope you all have power and are warm and cozy!
Hugs to Patty and everyone else!
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Rachel
Great picture!!! Enjoy the snow!!!
Babs
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Rachel - great photo and what fun for you and the kiddos!
Babs - I know what you mean by "cheating" on your MO..I kind of felt guilty "cheating" on mine when I booked a second opinion, even though I really thought I was getting substandard care from the first one. If your existing MO is good, they should support your getting a second opinion. And if they don't, remember - it's YOUR life, not theirs. When the one I got the second opinion from (who is now my MO) asked me if I was worried about hurting MO#1's feelings, I said that I'd prefer not to, but my life is more important than his feelings. What you're doing sounds absolutely right - why wouldn't you get the best possible state of the art treatment? As the ad says, "you're worth it!"
Have a bunch of errands today then hoping to get some yard work and photo editing done today!
Hugs to all,
Terre
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Checking in to wish everyone here a restful, painless, and joyful weekend!
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I dropped MO like a hot potato and never looked backed but that was because they really messed up with me. I work with two MO but my main one is at Dana Farber, but I am 3 hours away from there, and to be honest I will always have all my scans done there. I will use here for my xgeva shots or if I had to have different therapy, but I am letting DF call the shots.
Rachel love your pic and your attitude!! I got up and went shopping already. Pier One and Home Goods Store. WE missed the storm here (that's like a miracle for us) -
Deanna- Hoping you are feeling good from your xgeva shot.
Babs- IF MSK doesn't do that then who does? I salute you for staying on top of things.
PattyP- I am so happy you are feeling better and are keeping up with the boys!
Terre- Take it easy with yard work... Yard Work here is snow shoveling!
Hello to everyone who is reading this... you are all in my prayers.
Carol
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Love your photo Rachel!!
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rachel. Great pic. Great attitude.
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BREAST CANCER SINCE 2005. BONE METASTASIS 2010. LIVER METATASIS 2012. 2ND LIVER METASTASIS 2015. AM LONG TERM SURVIVOR. ARE YOU? HOW HAVE YOU HANDLED IT?
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Hi 2Athena2! Congrats on long term survival! I'm 3 years with just bone mets so far.
Completely off topic, but some of you wanted pics from the API show..here's one. Slowly editing them and will post the flickr link when they're up. But this should make you smile in the mean time...the world's cutest panda alpaca.
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Rachel, what a beautiful picture of you and the kids. You all look so happy!
Terre, omg absolutely adorable! I want one. Can't wait to see the rest of the pictures.
Thinking of Kendrasue, hoping she'll post and let us know how she's doing.
Myra, we miss you! Please check in if you can.
Hugs to all, Annie
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Love the pictures! Had first infusion of zometa on Thursday afternoon and woke up Friday feeling like I'd been hit by a truck - fever, chills, body aches. It was a tough day but thankfully felt much better by Saturday. Hopefully future infusions will go much easier. Looks like that is often the case.Stay warm everyone!
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2Athena2, Welcome. I am not a long term survivor YET, but I intend to be one. Congratulations for reaching 12 years. I hope we are both still posting many years in the future.
Rachel, I love the picture. You all look happy in the snow, and you have all the nice warm clothing on. We didn't get a single flake of snow up here. It's unusual, but I am not complaining.
Babs, You owe it to yourself to get that second opinion. Most MOs encourage it, so I don't think you will be hurting your original MO's feelings. Sometimes they like seeing a different perspective, too.
Purplegirl, I am sorry you had those nasty SEs from Zometa. Were you well hydrated the day before and day of infusion? That is supposed to help. I also make sure that I take Tylenol the day of and after getting Zometa. That way I can head off any aches heading my way. Some other people on this thread also take ibuprofen and find that it helps. I am allergic to it so I stick with Tylenol. My Zometa is infused over the course of 45 minutes, and that is supposed to be better than the 15 minutes used at some centers. Luckily, the first treatment usually has the worst SEs, so hopefully your experience will be better next time.
Terre, That picture is great. I have been imagining all sorts of things that the alpaca is thinking. What a face! Beautiful.
Carol,it sounds like you have a good, well thought out strategy for using your MOs to the best possible advantage. Three hours is a long way to drive, but you know that you have some of the best resources there for you. It is good that you are able to stay local for some of the treatments. You have the best of both worlds.
Annie, I, too, am hoping to hear from Kendrasue. It has been quite a while since she has checked in. I hope she is okay.
Myra, let us know how you are doing.
For everyone who was hit by the storm, I hope you are safe and warm. If you have time, please check in to let us know how you are.
My DH is getting stronger ever day. Unfortunately, the one and only medication he is on, Coumadin, upsets his stomach. Ugh! He feels great all day then yuck happens an hour after that little pill at night. He has tried it with and without food. Oh well. We will straighten that out with PCP this week.
We are looking forward to watching the Patriots game this afternoon. We hope for a win, of course, but as all you Broncos fans know, the Pats are facing a good team. It should be a great game.
Have a great day, everyone. You are all in my thoughts and prayers every day.
Lynne
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Hey East coast ladies....how are you all doing? My son said NYC got 30 inches at JFK.
2athena2, There are many here who have had mets for a long time. Have you looked at the liver mets thread? It may be helpful to you. I am out 6.5 years with mostly bone mets, some to my lung as well. If you feel comfortable sharing your story there are some here who may also be able to connect with you. This is a very supportive wonderful group of women who are incredibly knowledgable and caring.
Purple, I just told my dh that I was sure a Mack truck had run over me so I get the aches you are feeling. Those first couple of days can be rough. How long was your infusion? The consensus here is at least 30 min. I had 250 ml of saline this time as well and that has helped. Keep hydrating.
Terre. I so love the alpaca! Thanks for the smile
Rachel and Patty, Sounds like some time with your boys has been really nice.
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Hi 50's Girl and Lindalou,
I think they told me the zometa infusion was over 20 minutes. Maybe I can ask them to slow it down next time. I was dehydrated (probably from xeloda) the day of the zometa infusion so I got fluids just beforehand for that. I'll have to do a better job with hydration next month. I have tiny veins and any IV is a huge pain (literally). I couldn't wait to have it removed a year ago, but I'm really missing that darn chemo port now. I was hoping for Xgeva shot but it was not approved by our insurer. The suggestion about taking tylenol or Motrin proactively is a good one, thank you. And on a separate note, as a Massachusetts transplant to Georgia, Ihave to say GO PATS!
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We have 2 feet of snow! My husband is the human resources director for a hospital here, so he went into work this morning to serve breakfast to the staff that had to sleep over. I am happy to be snuggled in today and look at it out the window.
Cristina--how did you make out in Morth Jersey?
We are Massachusetts transplants to Philadelphia. This is a Patriots house, too! I don't really care much about the game, although it does determine my husband's mood. But I love cooking for the day. Beef stew is in the crock pot, dough is rising for rolls, and cheese is shredded for nachos.
Wishing everyone a great day.
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purplegirl. - sorry you felt so bad. Hoping it's ge first time only
Lindalou. I don't think I knew you were 6+ years out. Hooray !!! Love the inspiration.
Terre. - how adorable. I want one. But wait, don't they spit at you ? Well maybe not.
Today I am feeling thankful. Had some horrible nightmares about dying and how it would affect dss and dh. Kept waking up and then going back to sleep just to continue the same nightmare. Ugh. Although I am not that person who would say cancer has been a blessing for me or I am thankful for it. - uhh. Hell no - I can see the positive thst has come from it. I am home and have gotten to spend so much time with family. If i was well, iam sure I wouldn't have. I have always been s workaholic and missed so much when dss were in daycare. I was working 80+ hours week plus on call 24\7. Not sure anything short of cancer would have stopped me from working so hard for the future while missing the present. So today's thought for me is thankfulness and gratitude for all the time I've gotten with my family. I am not able to be the mom and wife I wanted to be but I still add value to their lives. And maybe reconsidering what I thought was so important for me to be.
Hugs to all.
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Patty,
Thank you for your post. I have been pretty down since learning I was stage 4 about a month ago. You help to put things in good perspective. Blue frog, I like watching football but other than a handful of players, I probably could not have told you anyone's name or position before this season. Then I played in our office fantasy football league and won (with lots of help from son #1) - now I'm really into it!
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Patty, I don't think that anyone feels that they are the wife and mom that they wanted to be even without bc. We do the best we can do under the circumstances we find ourselves in. No one ever knows what they will be blessed with or challenged by. I have to say that you seem to be doing a fantastic job of being a wife and mom. Your love for your family comes through in every post. I have no doubt that your husband and sons know very well that you cherish every minute with them, and they feel your love every day. You add an immeasurable amount of value to their lives. You also enrich ours.
Rachel, I am glad you can stay inside today. Your house must smell so good from that beef stew cooking in the crockpot
Lynne
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