Bone Mets Thread
Comments
-
Letmywifelive....see if your dr will get your wife on Xeloda. It has REALLY helped a lot of women here with both liver and bone mets.
I have multiple organ mets and multiple bone mets. Xeloda has kept me here for another nine months. Better than nothing. Most people tolerate it pretty well and can manage the hand/foot syndrome. There's also a great Xeloda thread on bco where the ladies can help you both navigate thru it.
((Hugs)) to you and your wife.
0 -
Thanks Lita,
I am just praying to god that something works for her for a long time to come.
0 -
Dear Let -
Same thing happened to me. Years of bone mets, then some small liver progression while on Letrozole/Ibrance. I blubbed so hard when the MO told me that I had to lie down on the floor to recover.
That was a year ago. Did six months of Halaven. Liver spots are gone, and am stable on CMF. Am actually feeling better, and testing better than I have in years.
Your wife has just begun to experiment with chemotherapies. She has a lot of tools left in her basket.
Cyberhugs.
0 -
Dear Blaine,
Thanks for the words of hope. We are going to meet with my wife's oncologist next week to discuss @ Stanford. Also going to talk to her second opinion oncologist @ UCSF.
0 -
Letmywifelive, I'm sure you and your wife are devastated by the news of some liver progression. Hopefully, since the results you've gotten so far are just preliminary, it won't be as bad as you're fearing, and her next tx will wipe out whatever is going on very quickly.
Patti, I'm so sorry about your friend. We just lost a very dear friend to ALS, and the irony of it was that he had been such a wonderful, caring support to me in recent years, having lost his first wife to mbc many years ago. Never in a million years would I have anticipated that things would happen the way they did. Very hard to wrap my head around when it happened, and also to hear how many people know someone with ALS -- far more than I ever realized.
Thankfully, I got one of the really good medical assistants today and both blood draw and shots went extremely well. I asked my (local) onc about the numb fingertips, and he didn't think it has anything to do with Faslodex or Ibrance, but possibly something going on in my neck, which may make sense since I had some shooting pain in my neck a few days ago, after trying a different pillow. Anyway, If it continues, we'll do an MRI.
0 -
Letmywifelive, so sorry for your wife's news. I don't have any advice for you, but I see others have made some recommendations and I'm sure that Stanford & UCSF will have a plan. My MO has told me that I have at least another 9 options after Ibrance so I'm hoping the same is for your wife. ((hugs)) dee
0 -
Dee -
I replied to you on the ibrance thread. I did not imagine my stay will be so short lived there - just 6 - 9 months :-(
Lets see what plans the MO has for her.
0 -
Jen - happy to see your stable results!
Letmywife - so sorry for your wife's news. I'm sure your MOs will have a good plan in place. My thoughts and prayers are with you both.
Dee - If you think that's a lot of snow, you have to come here! We already had a few storms and that white stuff is piling up.
Wendy - oh how I envy you! Enjoy every minute. My turn will come, sister and I are going to Cuba in March for 2 weeks.
Lita - You make me laugh with your soap box! Our government passed a legislation recently for assisted death in a hospital or hospice setting. It usually takes a maximum of 10 days after the request. I'm glad to have that option when the time comes.
Patti - I love your honesty and your outlook. Hope you get past that bureaucracy without too many hurdles.
0 -
((Patty)), ((Steelrose)) and ((Momallthetime))
Deanna - glad the pincushion day went as well as it could have.
We have a little snow. Hoping for more.
>Z<
0 -
Letmywifelive, I know this isn't much consolation but I too had a short run on Ibrance resulting in progression to my liver. However, there are many other options, as you know.
One thing I have learned about cancer and progression, we as patients hope for years, however, the reality is, success for many new treatments and medications is really measured in months. That is true of Ibrance. Look at the paperwork, disease-free progression is mentioned in terms of weeks, months but not years. My husband, a researcher and MD was the first one who pointed this out to me. I am not trying to be a naysayer here, just telling you the reality of many of these treatments.
The other thing about Ibrance for me at least is, without it, I might be far worse. Perhaps Ibrance slowed progression significantly, who knows?
I'm starting my second round of Xeloda tomorrow with very high hopes that it kicks my liver mets to the curb and I can continue enjoying a great QoL. Good luck to you both. I believe there is a place for science, medicine and prayer and I'm doing all I can to harness the strength of all three.
Take care,
Amy
0 -
Amy,
Thanks for providing a realistic view of cancer treatment plans available today. Curing cancer is one of the hardest problem mankind has ever attemptedto solve and we live at a time when the first meaningful strides are being made in this battle. No doubt the first few steps will be important but will not produce earth shattering results.
You are possibly correct that without Ibrance, things could have been much worse.
i am really trying to get myself educated about the possible treatment options now as it will be a trucky decision to make. Clearly the bone mets are benefitting from Ibrance in her case. So we need to continue that battle and at the same time start this new fight agaist liver mets
0 -
LetMyWifeLive - your wife's situation sounds a lot like mine. Started off with hormonals which didn't work, more and more bone mets showing up. I had a couple of them irradiated, which stopped them. Then it showed up in my liver. Only 8mm when I was put on MMM chemo. It grew to 15mm by half way through, but is now "barely discernible". I am now officially stable, since nothing is currently growing. Next scan is in February.
MMM stands for Mitomycin, Methotrexate and Mitoxantrone. Apparently it's quite an old combination (New Zealand tends to be about 10 years behind in Health). Ibrance won't be available in New Zealand for at least another 5 years. The only side effects I had were partial hair loss, and pneumonia just before the last of 6 3-weekly shots due to low blood counts.
Your MO may not have heard of MMM but I can confirm it worked well for me.
0 -
Oh, Linda...can I move up there? Gees, 6-8 wks is way too long to wait for the compassionate end of life drugs! Ten days up there is a BREEZE!
Going thru a lot right now, ladies.......just found out that my dear cousin was raped while exiting her "Hospice Care" client's home. My aunt waited to contact us because she wanted to see what the outcome would be. So sad to say my cousin has sustained major traumatic brain injuries. She has several seizures per day. I am totally bummed (and I was already bummed b/c of seasonal affective disorder with the lack of light....gees, it never rains in CA but it pours, as they say!)
My bone scan is sche'd for mid Feb. Major back pain in lower lumbar right side. We shall see what we shall see.
Right now, gonna Netflix and watch some COMEDY. They say laughing helps when you're sad and sick.
Sorry to dump on y'all....but this is the only place I can go.
Tears in my eyes as I conclude...my cousin is such a beautiful person doing hospice work......and now she can't......
No more words,
L
0 -
Lita,
I am truly sorry to hear about your cousin. What kind of brutes stoop down to the level of rape I can not imagine. In some countries rape and drug trafficking carries the death penalty.
I pray for your cousin and I am sure she will recover soon and come out stronger.
Have you asked your oncologist about your back pain and do you do tumor marker tests for tracking your.disease
0 -
Suems,
Glad that you found something that works for you. That's the whole posit of any treatment plan.
We are yet you talk to the MO and figure out a treatment plan. I can see that this will be a tricky one. The current treatment seems to be working for the bone mets but could not prevent mets in the liver. So we need to be careful so that thebone mets remain stable while we take care of the liver mets.
0 -
I really wish Australia had some type of "Death with Dignity" program. Every time someone tries to introduce a bill calling for it, a lot of our politicians suddenly become very religious. The other angle they use to block it is that families will be killing off Grandma or Granddad to get the inheritance.
It is my damn life, give me the choice.
0 -
Oh Lita, my heart is breaking for your cousin. So very sad. Prayers for your whole family!
0 -
let my...hoping you can get your wife on something that will work for her to combat those liver mets. I have a small spot on my liver that they are watching and am also on hormonal so am hoping it doesn't develop into anything else.
Lita oh my gosh...am so sorry about your cousin! What a horrible thing to have happen! Will be adding her to my prayers, and sending cyber hugs to both of you. That's so traumatic!
I have appointments on Monday and Tuesday, Monday for blood work up, and CT and bone scan on Tuesday. These will be the first since they found my mets. Am already nervous. Needless to say, I probably won't get much sleep until after I see my once on the 17th. I could go check on results before then but I have had (for years) a serious anxiety and panic attack problem, and don't want to trigger an attack (full blown panic attacks) So I Will just wait until I can see my doctor.
0 -
All,
The hospice medical director came out yesterday and did my initial assessment for the EOL meds. He agrees I have less than 6 months. We talked about how new this is for oncologists who are forever optimists and the idea of assisting a patient to die is not yet deep into their repertoire of options. BTW, his coming out yesterday was a surprise .. I thought it would be sometime next week. He was very nice, and we had a chat....it was not just Q&A. As he was leaving he said he would shoot a note to my MO Before EOD re his findings.
An interesting outcome is I didn't need my usual 2-4 hour nap yesterday. I suspect it is because I finally felt heard in this domain. I felt free, relieved. I posted it on FB and my friends were like, "yea... I think". So adorable. I am trailblazing, and they are doing their best to adjust their thinking to support me. I am so lucky.
Happy to hear others' good results, and letmywife, hang in there. Wendy, I lived at the naval base on Cuba for 4 years in the 1980-90s,and while I saw a limited view of this island state, the waters are glorious! Enjoy! Be sure to snorkel.
It is storming madly here in N California, and my boy kitty insisted on going out this morning at 5. He sang me awake. As I wrote that last sentence, I heard him at the door and let him in. He's all yakkety with 'news' of the outdoors to the girl kitty and she's now grooming him. Sweet babies.
I've added ibuprofen to my pain meds, for the bone pain, and it's working great. Now I can have pain coverage AND be awake and functional! Yea!
Have a great day.
Love,
Patti
0 -
oh Lita! I'm devastated by the cruelty that your cousin was subjected to. I will add her to my prayers
0 -
Patti, thank you for being so positive and sharing your journey with us.
0 -
Patti,
You inspire and calm me. Kansas will never have an EOL law, but your perspective still inspires me.
0 -
Lita,
My condolences regarding your cousin.
I hope karma and justice smacks the assailant(s) in the face. Good grief.....
Love,
Patti
0 -
Wonderful news on your scans, Dee and Jen!
Lita, so sorry to hear of your cousin's horrible experience. Just so cruel.
Welcome Illimae. I have a met to the left iliac crest and one to T11, but blessed with no pain, too. I had the mets radiated a year ago in Jan 2016, and so far still good with no progression. I hope the same for you.
Patti, I so admire your strength and positivity. My wishes for the best QOL possible for as long as possible.
Hope we hear soon from all those who have been quiet, and I'm assuming Chelle is busy living life.
I'm in Squaw Creek for a week for work. Left cold and snowy Colorado for cold and snowy California! Yesterday was warmer and pretty nice, but today it's raining!
Hugs and love to all with fingers crossed for good results for those who have scans coming up.
0 -
Patty you are such an inspiration to me you are so brave . I'm not a religious person never was agnostic is the word I would use to describe myself. The other day I went on a sixteen km hike through the jungle and I really wanted to see the local version of raccoons. Was told at a local refuge how wonderful they are. Along my hike I said to myself half as a joke okay if you are really there please let me see one of these creatures . I shit you not two seconds later a mother and two babies waddled past us along the beach. I was gobsmacked. Makes me wonder.
Deanna here is a pic of our little hut.
Lita I was raped when I was 24 years old hearing about your cousin breaks my heart. She will get past it but it will be with her forever.
0 -
Chelle is doing great we are friends on Facebook busy building her dream home and I guess shovelling snow.
0 -
Lita - I have no words. Praying for your cousin.
Patti - You are a trailblazer. At some point we are going to die. As a culture we could be less in denial and embrace the transition. I am learning from you as I did from Stephanie. Frankly, I hadn't thought about death and how I want to die much before MBC. I am sure I am not alone.
I sense that planing this out is giving you control and peace. 2017 will be a great year full of Joy for you. We want to know everything.
>Z<
0 -
Thanks, Wendy. Yes, the Denver area has gotten smacked with snow, too. That was a great story about the raccoons. Love your hut, and I admire you for doing a 16km hike! Keep on truckin' and enjoying Costa Rica.
0 -
Letmy, my oncologist isn't going by markers. She says scans are more reliable.
0 -
We haven't heard from rnsparki/Beth in a while. Anyone have news? I did some "investigative work" and last time she logged in BCO was in Dec. Beth, if you're reading, please let us know how you're doing.
0
