Bone Mets Thread
Comments
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Swess, have you applied for SS disability? It will be approved with MBC. To me, it is like getting my SS early. I worked for 35 years, not including summer jobs through college, and I feel good about it. You are so not a loser. Why are we so damn hard on ourselves as women! Best MJH
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Swess, seconding MJH's comment about disability. I hadn't planned on retiring but SSDI made that decision so much easier. Absent that, and short of finding work closer, can you arrange to work from home a day a week? Anything to lighten your load will be a blessing.
And to those waiting for results or receiving news of progression, prayers to you. (I forgot to write down the names and found out the hard way if you try to look back a page you lose whatever you've written. Mods, any fix to that?)
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Danis Mom wants everyone to know that she’s stressed and busy trying to find Dani a new mo now. That’s her entire focus but thinks of us all
Bab
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Thanks for the update Babs! I am sending special prayers for her and Dani! There are so many of us having a tough time right now. All are in my thoughts and prayers, everyday. Babs, I hope you have a good visit with your parents. Gracie, waiting for scan results with you. Actually, I get my Pet scan and results Tuesday, so we will wait together.
Hugs and prayers,
Claudia
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Babs - thanks for the update on Momallthetime and Dani. They are always in my thoughts as are all of you on this forum. As Bigbhome and others have noted - it seems that many of us are going through rough patches recently. This is not an easy road to travel for any of us but at least we travel it together with tremendous respect and compassion for each other. I would surely lose my grip without all of you...
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I wonder if mom saw Forbes’ top 27 breast oncologists. Multiple ones in the NY area. It looked like they went by science and patient satisfactiondata
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Hope all of you awaiting test results have good news coming. Sending good thoughts your way. Good to hear about Dani. You all are going through so much.
I am starting Herceptin next week. I am having pretty more bad back pain since stopping Ibrance. Also the cortisone shot I had 2 weeks ago has probably worn off. I am going between panic that this is going faster than I thought or hope that the HER will slow the progression. With you all having such difficult days I feel guilty. All these emotions are making me feel selfish.
So I pray for all of you who inspire me.
Maire
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Maire - You have a right to every emotion including guilt, if you choose but really with all you have going on I would stick with swinging between panic and hope. Quite sensible to feel that way given the uncertainties. If could tell me I would be dead in January the emotions would be easier to deal with. Unfortunately nobody knows how this will play out for each of us.
>Z<
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Reading and hoping for better news for you all. I Gad progression to liver after four years of bones only so moved from Abraxane to Gemzar and feeling it. Also yesterday had biopsy to liver and today I’m resting. Results next week. Everyone group hug.
Aurora
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Hi Ladies,
I heard someone recently say 'live in the moment'. I was never quite sure what they meant until recently. Whenever I start making plans or thinking about things past next week, I start to panic. I have multiple health issues (MBC bone mets, Sarcoidosis, and a pacemaker), and was recently told that I have several more years to live (my own fault....I pressed my onc to give me her estimate). I've found that if I get up and focus only on today, I'm much more able to deal with everything we're all experiencing. If I try to think too far ahead, that's when I go off the rails.
My last treatment failed (iBrance and Femara), so I've been on Taxol since August, and she recently switched me to Faslodex, as I saw good results from the Taxol. Unfortunately, I will go back on Taxol after the holidays if Faslodex doesn't work (I don't think it is....my pain is back).
Anyway, I wanted to respond to those of you who work, but would really prefer to have time to rest while having treatment. I qualified for short-term disability, and just applied for long-term disability. My onc said there will be no issue getting approved. I have worked all of my life and really liked my job, so I stayed with it for six months after I was diagnosed (Jan. 2017). After my first treatment failure, I decided to look into short-term disability. I was approved for six months. Since my recent discussion with my onc, I decided to look into long-term disability, as I don't want to work up until the end. My onc assured me I would be approved. Even though my pay will be reduced, I will no longer pay taxes, so that almost makes up for the full salary. Also, our annual taxes will be based on only my husband’s salary, so our tax burden is much, much less.
I feel so relieved by this, I wanted to share with all of you in case you haven’t thought about disability. It is a very nice safety net for those of us who really need to rest but need to continue to earn a living.
So Swess, there is no way you are lazy....between dealing with the mental craziness of this disease, and the physical crap we deal with on an ongoing basis, I think we are all warriors. For me, it's hard to tell whether what I'm experiencing is depression, fear, or fatigue. But no matter what, if I try not to think too far ahead, I'm much better off in the long run.
Z, hoping you are okay and continue to fight the fight. Your words and wisdom have often gotten me through another day.
Ladies, I thank you all for your posts....I don’t post very often but I sure do read and admire all of you for fighting and posting so we can all learn from each other.
God bless
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Hello all. New to this thread. Metasticized breast cancer ftom 2012 to liver and bone disgnosed 3 weeks ago. MRI says T7 spine tumor. This sounds so bad. Anyone with similar case? Looking for reassurance I guess
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Dear Schoolmom,
You’ve come to the right place for encouragement and support. I’m sorry you have to join us on this journey, but glad you posted so we can help.
I have many bone mets (both hips, lower spine, behind right rib, etc.), and I was told MBC in the bones is actually a better diagnosis than some. I think the fact that so many women have been able to live for years after diagnosis is the reason. So we’ll pray that you are one of them.
If you’re like most of us, we go through lots of emotions (shock, fear, denial) until we finally settle in to our ‘new normal’. Overall, no matter what you think or feel is safe to tell those of us who join you in the journey of navigating MBC.
My prayers of support are with you.
Laurie (my nickname is Booboo
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Hi schoolmom. I just pm'd you.
Mary
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Thank you all. I have a consult at MDAnderson next week so I will get second opinion on all this. My oncologist is sending me to rads and steroid for pain relief and continue Ibrance/Faslodex regimen. Maybe I will find out something downtown next week. I got on internet and googled secondary spine tumors and freaked out.
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Thank you Z. I’ll try to stick to hope and panic. And “ not today”.
Aurora I’m sorry to hear about your progression. I hope you have a restful weekend
Schoolmom hoping you find a good support here. I did. You are going to a great place for your second opinion .
I have mets to a whole bunch of places in my spine, hip, femur. Lots of us here and some amazing strong voices to help you out. Sorry you are here but I am grateful for this place. Maire
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Schoolmom, sorry you are now among us, but this is a wonderful support group. It takes time to adjust to this diagnosis. I have multiple mets in my upper "skeleton" and also liver mets. T7 is just the location of the met- "T" stands for thoracic, or the chest area of your spine. I think I have some in my cervical spine and lumbar. You will be treated and the mets will be stabilized. My first line of treatment worked for 16 months, and I have just begun the second line. Once you get a treatment plan, you'll feel better.
Sending hugs, MJH
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I just checked this thread again and I wanted to say thank you for responding in such a kd and loving way! I do believe my depression is the harder thing to manage. Anyway, I go for my first treatment tomorrow and I will post what it is exactly when I get home. Are there any recommendations y'all have for me? Anything I need to ask the Dr for to treat side effects? Anything you can think of that you wished you had known before your first treatment?
Hugs and love to you all. I any of you ever want or need to talk about depression or anxiety I am happy to talk. I have good experience where that is concerned.
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Welcome Schoolmom sorry and big hug for you.
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Welcome school mom. Great ladies here, lots of support, tips and information. I have bone mets inmy entire spine from neck to sacrum. Have them LOTS of other places too. Doing well on Ibrance/Letrozole/XGEVA.
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Welcome school, like many others here, I have multiple mets in my spine, ribs and both hips. I had radiation to the the largest after diagnosis and then was on Faslodax and Xgeva for 3 1/2 years. Now on Ibrance and Letrozole for a little over 2 years. So 5 1/2 years so far, and still going strong. I think Googling MBC should be banned. I know it scared me half out of my mind. Pay no attention to that nonsense, those statistics are old, old old. There are great strides being made in this area. We are, in a way, pioneers of the new treatments for MBC. Do ask the rads onc about possible side effects. Make sure that you get any meds you may need before hand. We are here for you.
Hugs and prayers,
Claudia
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wow. Thank you all for the support. That's why we are here together
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I love you guys all so much! I have considered applying for disability, but I’m scared. IF I get approved, the amount is so much less than what I make. And then there’s the whole no insurance thing. I’ve thought about divorcing my husband just so I can get Medicaid!!
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Has anyone heard from Pattypeppermint?
She hasn't posted since September and I'm worried about her.
L
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I’m worried too, Lita.
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I hope she is just really busy and will answer these soon.
Lita, how are you? I think of you a lot. Have you heard any news on your mri? Still praying for you
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Schoolmom, I’m in Houston and go to MDA too. They won’t give you a prognosis in years, everyone and every cancer is different but I’d just like to add that I have a hip bone met and recently small mets to the brain, both responding to treatment. There are many treatments available and with a good plan and some luck, many defy the stats you find by googling.
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schoolmom, I just want to add something about the stats you may have seen on-line. Because someone surviving 5 or 10 years today would have been dx'd and started tx 5 or 10 years ago -- pre many currently used drugs and regimens -- that automatically make many on-line stats outdated. And bone only mets is the most treatable of all mbc, with newer research showing many women living more like 10 years. And who knows what meds or other new discoveries will come along within those 10 years, and hopefully much sooner. At the moment, mbc is technically incurable. But there has been a lot of progress that is not reflected in those stats. In addition, until a new effort this year this year, there has never been a way to document those who recur. In other words, we've never been properly counted, which makes those stats even more inaccurate. And lastly but thankfully, the mbc community is finally being heard re. the need for more mbc research. We are no longer being swept under the rug, as we were in the past. All of these things should give us all hope.
Here is more up-to-date information:
http://www.breastcancer.org/research-news/more-wom...
http://www.lifescript.com/health/centers/breast_ca...
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I think a lot of people are worried about Patty. I am hoping that she is just too busy! Lita, did you get your MRI results? I have been praying extra for you, Kandy and mom and Dani! I sure hope he is answering those prayers.
Hugs and prayers,
Claudia
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Lita- how are you doing. I too hope that Patty’s just been too busy to post. I know Moms really busy now dealing with trying to find Dani a new MO Lately it seems too many of us are having issues. I hope we all have great holidays!
Deanna you’re so right about people finally recognizing the need for more mbc research. Hopefully we’ll all benefit from this sooner than later!
Bab
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If I don't hear from my MO re: my MRI results by noon Monday, I'm going to contact her and see what gives.
I hope she hasn't taken time off again. ((She seems to be taking a lot of time off here lately.))
If that's the case, I'll email the head of the dept and ask him to check for me.
L
P.S. Still worried about Patty.......
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