Bone Mets Thread
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Hello to all,
I'm a few pages behind and my brain doesn't retain information as well as it used to.
Kendrasue, so sorry for the loss of your cat. We lost ours a few years back and it was so painful that we only lasted 2 months before we got another. Chloe is so comical and entertaining, very different from Bamboo. She keeps us on our toes that's for sure.
Lynne, glad to hear dh gained a couple of pounds, that's a step in the right direction. You've been an amazing caregiver and he is truly blessed to have you.
Momallthetime, I'm here, struggled with some serious pain when I tried going off of my Celebrex due to stomach issues. I'm back on it but looking for an alternative, not keen on the burning stomach pain. I am interested to hear what the thoughts are on Dani continuing with only the Ibrance/Letrozole combo. Regarding the skull mets I know you may think this sounds absolutely crazy but have you ever thought of an essential oil like Frankincense? It is said to cross the blood brain barrier, of course check with Dani's onc but I do use it topically on all of my met sites. Wishing you all the best!
Wendy, so sorry to hear about your sister but glad she got checked out. You very well may have saved her life! I have an older sister who won't even go for a mammogram, can you imagine? She said she couldn't handle knowing if there were something there.
Dee, welcome back, sounds like you had a lovely time. Must have been hard without Susan there.Terre, missing you! Are you busy traveling for work? I had my infusion on Friday, felt a bit off on Saturday and then came down with a cold. My onc called yesterday and said blood work looked good and tm's were stable. I'll take it.Hugs to all, Annie0 -
Annie, It is good to hear from you. You have a cold on top of everything else, ugh! I am so sorry. It is good that your blood work looks good and TMs are stable. WOOHOO. I hope you get over that cold and feel better soon.
Lynn
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Patty posted the following to the Patty thread. I knew you would all be interested.
hi all. I am still in the hospital. Starting to feel better. Yea ! The power of fluids ! So getting all IV meds : zofran, phenergan. 2 antibiotics and a pain pump. Still on cleasr liquid diet but have no appetite. Darn. I was so happy to have gained 10 lbs over the last couple months but I have lost it plus some more now. Ugh. I have been having a pity party for myself and I finally felt energetic enough to login to bco and have been truly uplifted by all your support. I sincerely feel like y'all are my life line. Don't know how I could handle this without the support of y'all. THANKS !!!
Too tired to respond to all.
Please keep me and my family in your prayers and good thoughts. It is so very hard on my family as well. ESp my dss. Wehasd thought home health was going to be able to take care of me at home but they said I was sick enough to have to go back to hospital. Really upset me but more so my dss. They worry so much about me. It's really just all to much for them to have to handle. Breaks my heart to see the sadness in their eyes and so many tears. The effects on my dss has been the hardest part of all.
Hugs to all
To God be the glory! Live, laugh, love... Life is way too short.Dx 5/2002, IDC, 5cm, Stage IIB, Grade 3, 9/13 nodes, ER+/PR+, HER2-
Lynne
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Lynne- glad to hear your DH is feeling better and getting stronger. Please tell Patty that she is always in our thoughts and prayers.
Annie- great TM results- celebrate!!!!!
Loving-happy to hear your brother is feeling better
Wendy-glad to hear you're doing well on your txtment. I'm so sorry that your DS was just diagnosed but she's so lucky to have you for help and guidance.
Dee-welcome home-aren;t vacations just the best!!!!!
Caryn-how lucky are you to be present at Miles' birth-keep us posted.
Momall-My BS told me about Dr Robert Nagourney and the chemo sensitivity testing he does. In fact, she referred me to Dr Wm Grace who practices in NYC who also does the chemo sensitivity testing. Down the road, if and when my cancer progresses, I intend to have the testing done.
My liver enzymes went down to what they were last month which is normal-yeah! I can stay on Xeloda!
Hugs to all
Babs
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poppin in to say hi. Thanks for all the PM's and texts checkin on me. Trying to catch us with y'all.
Wendy. So sorry to hear your sis has now been dx also.
Hugs
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Lynne, thanks for updating us on Patty. My thoughts and prayers are with her and her ds' s and family. I wish I had a magic wand, my heart aches every time she has to go through this.
Lovingisliving, thank you for letting us know how you're brother is doing. Glad he's feeling better and that the breast mass is smaller. Sending positive thoughts for good scan results.
Babs, every time I get the tiniest bit of good news dh and I go and celebrate with a steak dinner. We celebrate every little victory so Friday night we're off to the steak house. Congrats on the liver enzymes being down and in the normal range! Reason for you to celebrate too.
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Hey Patty, we were posting at the same time. Sending you big hugs and all my positive mojo! We missed you but think of you always!
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thanks Annie. And congrats. Hope you enjoy your steak celebration. Sounds like a good routine
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Annie & Babs, wonderful news!! We too always celebrate the good news.
Patty, good to see you here, hope you're starting to feel better.
Loving, crossed fingers for good scan results.
still behind, I don't know where the day went... laundry & unpacking, ugh, the bad part of a vacation!
cheers, Dee0 -
Hey Patty I wish you the very best I want to see you leave that hospital with all my heart. I'm thinking of you often. It sucks that my sister has now joined the club slowly I'm starting to see cancer as an epidemic everyone is getting it seems. Big hug from me 🤗
Wendy
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HI all! Patty our love to you. It is excruciating to see the kids going through this. Hope you get your strength back real fast and be with them. Hugs, hugs hugs
Annie never heard of that oil, sounds mighty interesting. Definitely gonna ask doc about it.Thank you so much. I remember you saying that you were not doing well with the Celebrex. Hope you get the meds you need asap.
Dee so happy you had that time away. What wonderful places you went to!
Loving I guess the scans will help you decide. Really tough, having to see someone you love going through a hardship and then you are having to deal with it too.
Babs this is so super interesting about Dr. Grace. I checked a bit in Google. I am so tempted, but I also thought let's wait when we really need it, but does it make sense? Do you know if Grace takes Ins? I could call tom and find out. And see what they say. It's fascinating, why is this not the norm??
So we did talk to doc, he IS adding probably Herc/Perj to the mix. But we are do for another conference call in the AM, and he might change to Kadcyla/Perj and Afinitor. She has been on all of them. Afinitor = mouth sores. That's what I remember. But i have been reading and there are studies that support going back to these tx, and adding others to it. Also, a very nice lady, in another thread, explained to me that the same cell could have 2 lines like Her2- and Her2+ so...that could explain why there was a dent seen in the scans even thou officially she is Her2+ i told him that, so he said yes, I was gonna tell you about it.
Trust. What is trust?? He asked for 2 more mos to see a change. We'll see tom.
GN
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Hi, Patty! Waving atcha from California! Keep your chin up. You know my strong feelings about getting a second opinion at the UofA.
Wendy, I'm so sorry about your sister. I'm sure you're already a huge comfort to her. But I agree -- sometimes it truly does seem like an epidemic and it's time people realize it and start throwing some serious research funding at it.
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Lots of good info on metastatic breast cancer related trials by Dana Farber.
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Wendy. I guess I didn't read back far enough but how long ago did your sis get dx and what stage is she ?
Dlb. I hear ya loud and clear. I have had several excuses esp the long painful ride but last week I finally called UofA for appt. however it's the end of June ( don't have my carder to dr exactly which day ). My mo nurse here is supposed to call and try to get me in sooner. I decided to leave dh at home so the kids can stay and go to dvhool and he can work. A good friend will drive me the 3.5 hours there and we will spend the night and see mo the next day. Mightbe s little easier then riding 7 hours in one day. Hopefully we might also get to do something fun that night thet if I feel up to it.
since pet showed some progression in size and no new metastasis current mo and I decided to stay on ibrance : falsodex combo another month ad then decide. Mo said The next possible tx for me are either taxol weekly ( no chemo for me I am done when it gets chemo time, at least that's how I feel now I may change my mind ) or tomoxofin ( mo doesn't really think will work since I've had arimidex and femara) or xeloda ( mo says Everyone gets horrible mouth sores or a new cliical trial in phase 1 that's not chemo but I forget the name and the se are unknown. So at least I know I still have some choices before chemo.
Hugs to all
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Good morning all,
Patty, happy to see you back on the thread. I hope you can get an appt sooner and what a great idea to go overnight with your gf.
Wendy, sorry to hear about your little sister. You probably saved her life by encouraging her to get tested. Good to hear you're doing well on the trial.
Babs - YAY on liver enzymes!
Terre - Where are you? How are you? Would love to hear from you.
Bosco - So happy to hear your scans were good!
Mommal - you are 2 busy ladies these days. Thinking of you and Dani today and hope conf call is conclusive. My MO is on vacation but nurse will try to give me results if she gets authorization from a colleague. Otherwise, results on 2 May! Yuck.
Very best to all I missed. Off to Xgeva today. Good day to all and hugs.
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Patty no they haven't staged her yet I would think 0 or 1 If there is such a thing. So she will be fine, she is going through the whole mental thing right now. I think it's easier for her because she already went through all this last summer
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Hi ladies,
I know it's been a long time since I've posted. I find it terribly hard to keep up. I've missed a few pages but did just read the last few pages, so I'm caught up on recent things.
Patty- glad to see you here again. I'm sorry you can't stay out of the hospital. In my mind, I've already decided that after Ibrance fails, I plan on going to Xeloda. I know it has some tough side effects, but I've heard some good things about it attacking the cancer, so for me, I'd like it to be next. I don't feel so good about Affintor/Aromasin combo that I think my onc wants me to have next. When we cross that bridge...I've put off scans, but I know I'll likely get some in May so we'll see what the outcome is then.
Wendy- I'm so sorry about your sis, but stage 0 or 1? Awesome considering what it could have been and I'm sure she'll be fine. I've known quite a few stage 0/1's to get treatment and move right on with their lives.
I'm still struggling with all the same issues. But I'm reading Radical Remission. Has anyone read it? Does anyone have any feedback on it? Is it all fluff or does anyone believe it? I'm finding I love the little stories of cancer survivors, and I do need to increase my positive emotions anyways, so none of the suggestions are harmful. I don't plan on abandoning Western science though.
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Patty. So glad to see you back on here and glad you're going to U if A and taking the ride with an over night. Maybe you and your friend can at least get a fun dinner together!!!
Mom all I'm going to PM you today about Dr Grace
Hugs to all. I'm at. Work and only had a few minutes now
Babs
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cristina. I've never read it let us know what you think when you get done. Glad to see you
Linda e. Hoping you get your results from nurse. May seems like a long time to wait course, I am impatient.
Wendy. Your lil sis went thru it last year with you or her ? Glad they caught it early.
I am still in the hospital but feeling better. Actually got a shower instead of a spit bath. Amazing what simply getting cleaned up can do to give me energy. Mo said must push myself to eat anything just eat. Everytime I get a few bites down I just throw them up quickly. So still some vomiting but def better. My bff supposed to bring me a sonic peanut butter fudge shake but her 3 month old GS started having seizures last night. Er said was caused from ear infection and fever. Wow how scary. I always say if someone in my immediate family has to have cancer I am glad it's me not my children. Don't even want to imagine how hard that would be. So many parents dealing with their children having cancer. Ouch. Breaks my heart. My mom was still alive when I was first dx in 2002. She had metastatic breast cancer for over 20 years. She cried many tears believing my cancer was her fault. Thankfully she had already died before my stage IV dx. I sure miss her and always admired her spirit to just keep going day after day. Not just surviving but living and making memories for her kids and grandkids
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Hi all
I do keep reading but not posting much. I am in a brain fog since my mother's death and really struggling with sleep. I left the house yesterday for a walk and had tea kettle on the stove. I came home needing a new stove top but so greatful I didn't need a new house.
Patty happy to see your post. I hope UofA has some good answers for you.
Wendy so sorry about your sister's dx. Wishing you both peace.
Christina good to see your post as well. I am on the A/A combo because my MO doesn't like ibrance. But so far it has been easy. I swear by the steriod mouth rinse that keeps mouth sores away.
Linda I hope your husband stays on the recovery road.
Momallthetime Thinking of you and dani and hoping you find the right medicine.
It seems there has been some good news to celebrate on this thred but I can't remember who and can't look back with out losing post. I do always love reading the good news.
Peace to all
Mary
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Patty - So good to hear your "voice" on the board. A girls road trip is always a good idea and hopefully you'll get some helpful answers
Annie- Good news on the TMs!
Lynne- With better weather and a healthier DH you may be able to enjoy Spring. Fingers crossed that the setbacks are behind you.
Babs - Yay lower liver enzymes!
Loving-Good news about your brother...hope that continues to improve. He is due for some relief.
Wendy- I'm so sorry to learn about your sister's DX. I hate when it happens to others. Thank goodness you are there for her. Hoping it is treatment and a cure for her!
Chelle - Hope the new house adventure is going well!
Terre - Any cute kittens rescued lately? I know work interferes!
Mary - Hoping your spirits lift in the days ahead...maybe a trip to Starbucks for tea... take care of yourself.
Cristina - Good to see you here!
Momall- Dani is so fortunate to have such a great Mom/advocate. It must be so hard...I really admire what you do.
Dee-Your trip sounded wonderful...the pictures were beautiful and i'm sure your friend's DH was glad to see you...there are probably only a few people he can really talk to about it.
Caryn- Looking forward to baby pictures in the near future.
Got the last reports back. TMs were a bit lower and platelets and neutrophils were much better so I'm back on the Ibrance wagon! Trying to go without pain meds today...want to give my stomach a break. My youngest DD gave me a zippered bag that says "Kiss Life Today, just the way it is." It's hard to do, but it seems that some of those long held small goals do happen when I look for them and stop obsessing about MBC...easier said than done. I obsess when I'm here on the boards with kindred spirits and pretend to be normal the rest of the time. :-/
Surely there is someone I missed ...forgive me!
Thinking of you all,
Kathryn
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Mary- I am so sorry you are struggling with the loss of your mom. There is nothing anyone can say or do to ease that pain. Only on the wings of time does grief fly away on. Happy to read that you caught your teapot in time to spare a disaster. Maybe that is a sign that someone is watching over you.
Patty- I took a break from the boards and the first thing I did when I logged back on was to look for you. I am waving at you !!
Lynne- hope the trip into Boston was great! Weather is so much nicer today! Maybe Spring is here to stay...
Kathryn- Good news on blood work and no more pain meds. I too gave up my advil last week. So far so good!
Carol
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Hello to all,
Cristina, I am reading Radical Remission right now and loving it. I don't think it is all fluff and I know for a fact that these remissions can and do happen. It makes me feel hopeful. One of the radical remission stories is of someone who practiced Qigong everyday and their cancer disappeared. I have come to know of a woman who was taught by my teacher and who's metastatic breast cancer has been in remission for years.
Linda, I hate that you may have to wait til May 2 to get your results, hoping the nurse can get them for you.
Patty, glad you're feeling a bit better. I did not realize your mom had metastatic breast cancer for 20 years, it sounds like she had an incredible spirit! I'm sure you learned so much from her and I see you as a beacon of strength.
Kathryn, glad to hear tm's were lower and platelets and neutrophils are much better.
Mary, so sorry you're struggling right now, sending you extra big hugs. So glad the damage wasn't greater than needing a new stove top, so scary when we think of what could have happened.
Hugs to all, Annie
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Hi everyone, I've been reading and thinking about each one of you as you go through your individual paths but it's great to see how we all can come here and find support. I started my new treatment today: Ibrance/Faslodex and so far so good. After reading all the tips on the other thread for this combo I knew what to expect and my nurse was ready too. They knew to warm up the shots first. She did an excellent job and it did not hurt. I am going back next week for the next "loading". I feel fine. After the shots I went to have breakfast with my daughter and later I had a nice massage which is recommended for this treatment. I am grateful that so far I have not suffered from too many se's from my treatments.
You are amazing women, to deal with this disease while still working and/or seeing your relatives pass away and/or be sick themselves. I don't know how you do it. You are in my prayers for strength always.
Aurora
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Aurora! So happy the shots didn't hurt!! Good luck with the protocol!
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Annie, when I was diagnosed with MBC I was 18 years out. (Oct- 1997 - Oct 2015) Before any treatment for MBC I finally had a Pet/Cat Scan to confirm what they saw on X-ray was a lytic lesion-- the radioogist report said that there were old sclerotic lesions along with the new lesions. I said how could that be? I had a bone scans etc for 10 years after diagnosis and the scans were clear.
Finally when I got to Dana Farber I again asked about what they saw on these scans? MO said to me, sometimes your immune system will just fight off the cancer. I asked how old these healed lesions? I was thinking maybe back when I was on tamoxifen and then Letrolzoe after the chemo and rads back in 1997 that was the reason for the healed missed cancer in my thoracic spine and no one knew I was MBC. But then I thought, I had scans many times after that, including an MRI of my spine in 2008 for surgery to my L-4--5 etc. MRI was clear.. I stopped letrozole in 2007- So between 2007-2015 I had bone mets to my thoracic spine that healed without treatment. TM's for yearly check ups were always normal.
I guess I will never know, but I hope because it took so long to come back the first time that it will take it that long again.
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I've not read Radical Remission, but I'm intrigued. I have a Barnes & Noble gift card that just found it's target 👍.
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Carol, I am amazed at your story! We were talking about this the other day, how our immune systems just fight off cancer without us knowing, it happens to everyone, every single day a properly functioning immune system targets cancer cells and destroys them. When my MBC was diagnosed the first lesions seen were also sclerotic, making me wonder how long they had been there. Coincidentally these ones were located very near to my original tumor and have remained stable this whole time. I do however have others that took awhile to show up on scans but are there nonetheless and I wish they weren't. I'm hoping that since they told me my breast cancer was a lazy slow growing one that it's the same in my bones.
Caryn, I'm thoroughly enjoying reading Radical Remission and I'm hoping you will too. It is amazing how some of these individuals were able to overcome catastrophic illness. I'm just about half way through and I'm finding it hard to put down.
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Busy day today... will catch up your posts tomorrow. In the meantime, I wanted to share a couple of things, in case you didn't see them.
http://money.cnn.com/2016/04/13/technology/sean-pa... That should go a long way! Let's just hope & pray a big chunk of it ends up in the hands of mbc researchers!
http://www.ncbi.nlm.nih.gov/pubmed/27044931 This sounds like very hopeful news for anyone with treatment resistant ILC.
On Radical Remission... Just wanted to mention that it's available in an audiobook, which I accidently bought on Amazon (in too much of a hurry) a few months ago. Thanks for the reminder to listen to it!
Will get caught up tomorrow.
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Good Morning
Patty good to hear from you and keep getting stronger and better so you can go back home.
Wendy, you will be a great comfort and support for your sister. Sorry she ( and you) have to go through this.
Kathyrn, What a special gift your daughter gave you. I'm sure you will always cherish that.
Linda, How are you doing after Xgeva? I had Zometa yesterday and feel achy but not too bad so far.
Letmylife, How is your wife doing?
My dh's prostate numbers came back and are low. They should be zero or <.01 after removal of prostate. My thyroid nodule showed a little growth as well. So we are both on 'watchful waiting" and will rescan for me in 3 months and repeat lab for him in 2. My thumb was hurting quite a bit, so went to see my PT. Had an xray and have a small fracture so he gave me a wrist splint/brace to wear. It sure helps!
Warmer Spring weather finally headed our way and is much needed. Dee, I may take that convertible out for a spin.
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