Bone Mets Thread
Comments
-
Patty:
I so agree with you. I worked 70 hour weeks and was always stressed about work, always at events, checking email. I never would have let myself stay home. I had started an even more demanding job three weeks before I was diagnosed. I was so sick after the first chemo round that returning to that new job seemed impossible. It is financially hard, but probably the best decision I've made. I couldn't have imagined before how much I love being home with my kids.
I learned last night that one of my high school classmates died unexpectedly at 40. He left behind a wife and two very young children. As much as ithas been incredibly stressful faced every day with my own mortality, I am grateful for how thoughtfully and deliberately I can approach however much time I am given.
0 -
For anyone interested, the 2016 API show pictures are at:
https://www.flickr.com/photos/sparkleinlv/collecti...
The dog trial guy that I have the most photos of and the woman with the poodle are our former neighbours.
0 -
Does anyone ever feel a hot sensation in your head (skull) like the back of it -not a hot flash I don't think but sensitive to touch where your hair is? Then it goes away but is most bothersome 3 hours after meds? I worry about skull mets. Bone scan in 2 weeks.0 -
LovesMaltese: I have skull mets, but not the symptom you describe, if that alleviates your worry at all.
0 -
Where do I start? Can it get more crazy. Auntie in Hospital, spent 2 days in ER. Yep that's how it is in NYC. I was with her. She is childless and we take care of her. She was always there for us. She will b fine, but just ot get her set up...
There is so much going on in this thread, it's a punishment when I miss to look at it, bcs I wanna know what's up, and I learn so much, and it's the most comfortable place to be at. I have to write things down.
Lynne oh my- soo happy for you. You are great, how you watch all the details. Best wishes.
Patty love your attitude. It's everything. Just watched Allan Pease https://www.youtube.com/watch?v=H0KyOF_h5XE, he has gr8 ways how to go about life. Enjoy ur kids!!
Dee - Nikkis my daughter has this for quite awhile now, the ones that were disrupting her optical and the ones that were pushing throught the dura she Gamma Knife to the area. It helped some. Otherwise they are just watching. Hoping tx will help. Btw, from what I have read and learned, MRI uses very little Radiation, it really should not be a problem to dx better with the MRI. After PET/CT showed these lesions, Neuro Onco always does MRI, actually it's already ordered, so when she goes for one she has the MRI right after.
Chelle, so cute they keep you busy like that, good for u!
Lindallou how did you send all the info so they know how to advise you? How does NCI know to match you, I would ask them about the Ibrance that she is taking, even if shes HER2+.
Rachel - you go girl, they are precious these little ones, enjoy them.
LovesM i did not realize that protein helps so much with platelets, Dani's is at 60 now.
Kathryn it's so encouraging. So happy for you.
Terre def a nice way to be distracted, thinking of others, these helpless beings. Good for you.
Deanna so you good with meds now?
Aurora glad you are going ahead.
I am sure I did not address everyone, so sorry.
0 -
Thank you Rachel. Are you enjoying the football game!
0 -
Here are two of my granddaughters with their big brother (one of my grandsons) all decked out in their Patriots shirts. We are hoping that the Pats play better in the second half.
0 -
txmom I did form a new thread, with triple +mets, so let's see what they say- hope I'll get some helpful answers. good luck
0 -
LovesMaltese: I am most enjoying that my 11 year old daughter is watching for the first time. She asks the most naive questions (do all the players make the same amount of money? Isn't the super bowl every 4 years?) So entertaining and innocent. My 8 year old son keeps rolling his eyes, because he is, of course, an expert. There was an article in the Globe a few weeks ago about Tom Brady's chef. My kids are attributing the score to his lack of nightshade vegetables.
0 -
Momallthetime: you have been very missed!
0 -
Rach- love the rolling of the eyes! Brady does Vegan and has private cook. I also do vegan. No private chef.
0 -
A private chef would certainly help me stick to a healthy diet.Of course an income like Tom and Gisele's would allow me to afford that chef!
0 -
Not looking good for the Pats. Chelle is smiling.
0 -
Not a football fan myself (even though Super Bowl will be 10 minutes away from where I live), but I would like the personal chef, housecleaners and a personal trainer 😊
0 -
Terre - Beautiful pics! Those dogs are amazing!
Lynn - they are so cute and precious!
Loves, can't help you with that sensation of your skull but good luck with bone scan!
Mommal - You are one busy lady. I hope you have good participation on the thread you just started.
Here's a pic of my sister's new dog. Since I have a Cocker she wanted one as well. Here is Romeo!
0 -
Hi everyone! Momall--good grief. As if you didn't have enough on your plate!
LindaE- Romeo ...
Rachel - love the eye roll.
And sorry Pats fans....I'm happy!
0 -
LindaE, I love the pictures of Romeo.
Terre, I'm glad YOU'RE happy. Haha. The Broncos definitely played a better game than the Patriots today. Poor Brady spent a lot of time lying on the field today. I had never before seen a quarterback get sacked so many times in one game. I hope the Broncos do well in the Super Bowl.
Lynne
0 -
Kiwicatmom - thanks for the information re: bone regrowing causing lot of pain. I can't tell you how much better that makes me feel!
0 -
OH Romeo, OH Romeo! What a beauty! We once adopted a filthy flea infested, matted 7 year old pure cocker from an Animal Control on his last hour before he was to be put down. I had told my (then) 11 year old son he could pick any dog he wanted, and that's who he chose. What a wonderful family dog he turned out to be. Lived on to the ripe age of 16. He had the BEST personality. So much fun!
0 -
Terre, Your photos are incredible. What kind of camera are you using? lens? I like punk alpaca, He has an attitude!
LindaE, Praline and Romeo will bring lots of love to you and your sister. Beautiful dogs.
Lynn, your grandchildren are precious. I bet you are so happy to be home and get to have them with you and your dh. NIce to see you having some fun.
Moma, Check out NCI MATCH protocol or go to cancer.gov and check to see what centers are doing the trial. It involves a biopsy. Those results are then matched with certain drug combos whose tumors have specific gene abnormalities. Looks like April is when the NCI will have more than 20 drugs on tailoring treatment. If I learn more, I'll let you know. I won't start until then.
Good night to all.....
0 -
I'm smiling about the Broncos win! So hoping they'll do well in the Super Bowl and not embarrass themselves like the last one against Seattle. I'm rooting for the Cardinals because my in-laws are in Tempe, but Carolina is looking pretty tough! Best to you all.
0 -
lynn aww grandchildren adorable
Lindae. Romeo is sweet. Hope Romeo and praline become fast friends
Terre. Awesome pics
I've slept most of the day. Darn back pain made me take enough pain meds tonknock me out. Feel like I've lost another day with family I won't ever get back. Get.
0 -
Guess I will dive in and introduce myself and ask some questions, as I don't think I could ever read all the comments on this post. My name is Karen but I go by sqrlady (I rehab squirrels). I was diagnosed with stage four breast cancer with mets to the liver and bones in Feb 2015. After chemo, my oncologist says I am in remission based on my tumor markers (I assume). I am now on Femara and will soon be starting IBrance as well. I am also taking XGeva for my bones. I have had a lot of issues with my asthma throughout treatment even ending up in the hospital four times just for asthma issues. I did have pleural effusions with cancer cells in the fluid but apparently no spread to the lungs themselves. It seems many of the treatments say that they can cause breathing issues. Does anyone else get these? I go back to see my oncologist on Thursday and will be asking him some questions too. Does anyone get totally exhausted for about a week after taking the XGeva? It wipes me out for about a week after every shot. I had to wait to take the IBrance because I had a wound where they had to remove the expander as it became infected. It is now healed so I am guessing it will be time to start it next. My liver enzymes all remain high but do seem to be going down with each blood test. I have had no bone pain that is any worse then the arthritic pains I would get prior to having cancer. I had multiple mets so I am wondering why there is no pain, even though I am grateful that there has been none.
0 -
Sqrlady welcome to the thread sorry you find yourself here but feel welcome just the same. This group is full of knowledge and encouragement and I'm sure you'll find the support you're looking for like I've found it. First order of business I hate to contradict your onco and to rain in your parade but as far as I know there's no such thing as "remission" when it comes to stage 4. There's only NED (No Evidence of Disease) which means any active cancer cells are too small to be detected by current technology and in the case of bone mets there's always some evidence since even when they heal the bones still show where there were lesions. This al doesn't mean that there is no hope. Metastatic breast cancer can be controlled and there are many drugs that can be used depending on your type of mbc there are many here who have been living with mets for 5, 15, or even 20 years.
I suggest you fill out your profile with the type of mbc you have and what treatments you have had and are still having and make it public that way others with similar characteristics can join in and share their experience with you.
Again welcome and I'm sure others will soon join in.
Aurora
0 -
Linda the puppy is a real beauty you found a good one there is he sensitive about his ears? We had one as a child and I remembered that about her.
Patty how did you get so wise at such a young age?
Lynne your grandchildren are so precious you are a very lucky lady.
Terre you are a lady of many talents so how's the gardening coming doing any?
Being Canadian I know nothing about football now ask me about hockey....and I would still know nothing lol.
Have a peaceful restful night ladies and I am thinking of you all.
Wendy
0 -
Patty crazy how u get one good day and then bam it hits you again. Hugs
Xavo HI
LindaE love Romeo, how grand he looks, nice companion for Praline.
Lynne so adorable - they seem to be in the best behavior!
Lindalou thx so much, i'll try and look into it.
Terre how is the house?
Rach thx sweetie.
TXMOM - this is the thread -
Topic: STAGE IV MBC W BONE METS/TRIPLE POS. TREATMENT WITH IBRANCE
Forum: HER2+ (Positive) Breast Cancer —
No comments as of yet. I wonder if I posted it well?!? I did find Pearlady on the Ibrance thread. She is triple pos. also and looking for info also.
0 -
What a beautiful dog Romeo is! Looks like he was also a rescue. Lucky dog!
Lynne, your grandchildren are adorable!
Sorry the game didn't go NE's way for you NE gals, but living with a Colorado native, I would have been miserable all week if it had!
Welcome, sqrlady/Karen! Glad you've found us. And whether your onc calls it remission or NED (probably the more accurate term), that's absolutely wonderful that you've achieved it! I just started Xgeva, and yes, come to think of it, I have slept in a lot more the past few days. I actually hadn't connected that to the Xgeva, but maybe it has made me more tired. Now Ibrance definitely wipes me out on some days -- not in an exhausted way, but more what I call a general malaise -- just no real energy to get going and get stuff done.
Speaking of Xgeva, the weirdest and most annoying SE I have from it this first time (unless it's something new w/Faslodex???) is a nasty metallic taste in my mouth. It's been going on for 3 days now. Has anyone else ever experienced this with Xgeva or Faslodex?
Oh, and my TMs were actually up just a smidge -- from 211 to 213. Hopefully, it's nothing more than a little blip. But if it was in the other direction, I would consider it minimally down, so I haven't been happy about it and hoping it's not the beginning of the end for my run with Faslodex+Ibrance, on which I've felt really good. I've also had more rib and back pain in the past few days, but for now I'm chalking that off to Xgeva kicking in and doing it's job.
Oh, Terre... just realized I haven't looked at your photos yet. Will do that next! Editing to add: DONE, and loved them! I forget how rural it is there. Lots of country charm!
0 -
Welcome Karen,
Sorry you've joined but welcome. Terminology, with respect to NED or remission is not exact. They can be used interchangeably. Here is a link with some definitions:
http://www.webmd.com/cancer/remission-what-does-it...
Neither means cure, but for now, we'll take it!
Caryn
0 -
Thank you for the welcome. I, too, wish I did not need to find this board, but I am glad to find people who understand what I am going through also. I understand that "remission" is probably an old term and I know NED but I also know that it does not mean cure and I just have to keep hoping that the numbers will remain as they are or go down even further. I am not very good with settings on forums so I thought I had that set up but think I have it right now. I watched my maternal grandmother deal with breast cancer (on and off) for over 20 years. I had always thought I would never be able to put myself through what I saw her go through but when it happens to you you do what you must do to give yourself a chance at survival. My family has been dealing with cancer a lot this past year. First I was diagnosed then my aunt ended up with a glioma, then my cousin with ocular melanoma. Even though I am through with chemo (at least for now) I take my aunt to her treatments/doctor appointments every week.
The only two side effects I seem to get so far from the XGeva have been the extreme tiredness and cramps in my feet. I took Magnesium for those and that helped a lot. I have not noticed a metallic taste in my mouth. I do have this ongoing issue with my lungs though. It does say on the site that it can cause lung issues. I will be asking my doctor this week though, as maybe they need to send me to a pulmonologist.
I assume the alkaline phosphatase and other enzymes remain higher because of the damage to my liver and the mets to the bone. I am encouraged though that so far they have continued to go down with each test.0 -
Welcome Karen! As the others said, sorry you're here but glad you found us.
Thanks for the kind words - hope the photos brought a smile. The API show is my annual big outing; I really enjoy it. There's a sheep dog trial at the end of Feb that I hope to go to as well. Just love watching them. Got a bunch of flowers and swan plants in the ground today. The monarch butterfly caterpillars feed on the swan plants and we have tons of caterpillars so hoping for lots of butterflies. Cleaned the chicken coop and trimmed some roses. It's hot. Actually it's quite warm and humid. Ick. Makes me not want to do anything but sit in the ocean.
We went to Mitre 10 (like Home Depot) yesterday and spent up large on stuff for the house. I bought a bunch of paint samples so I'm going to be painting some stripes someplace to see which colours are best with the light here.Today is Wellington Anniversary Day; kind of like a State day in the US. So it was theoretically a public holiday today, for me anyway. My boss called me 7 times. Had a 2 hour conference call. Had a big proposal with a deadline today and my boss didn't get me comments on it until 10. So much for the holiday. So, I am going to take tomorrow and Wed off and hope that I actually get some time off and stuff done!
Wendy - we have the sports channels on cable so I can watch American football and hockey. I'm a huge Red Wings fan.
Plus my husband likes cricket, so the sports channels aren't just for me.Deanna - sorry to hear you're sore. TMs up 2 points sounds like within lab margin of error; fingers crossed that ti's just a blip and you're stable.
Watching the NE US on tv...nasty blizzard!
Hugs and good wishes to all!
Terre
0
