Bone Mets Thread
Comments
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Marylark- I am so sorry-that is so inappropriate! They are both in the wrong profession. You need an advocate and as much as we may want one or they may want one-no one has a crystal ball-they may have stats etc but, you are not stats.
When I was going to get chest wall and node radiation (breasts were already gone) my first RO was pregnant, but, told me-don't even think of not doing this radiation -you need it! Then she went on maternity leave. The second RO said-why bother with radiation- it's probably already in your bones anyway and it's an uncomfortable hassle. I said that my bone scan was negative. He said that was 6 months ago- have another one you'll see. all those + nodes trump a bone scan. I was crushed and devastated- my MO said-it's not in your bones. I got the radiation and didn't have mets for 5 years. unfortunately that visit stayed with me as a night mare for years. I did confront him and asked him what he was thinking! it hurt me and made me feel like I had no chance and wasn't worth saving (and he was wrong about the bone mets) he said he didn't mean it that way. I hope me confronting him helped his communication skills.
I still miss my mom and it has been 5 years. Best advocate I ever had.
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Hi Everyone. Thank you for your encouragement. I am feeling much better today. I just started with a therapist to make sure my head is right for the fight. Today he was coaching me on making the right stands for myself. Going down to MDA next week to meet with a few docs. The meetings will determine whether I stay. If it doesn't work to my satisfaction I will go to Univ of Colorado. I met a good oncologist there who saw no reason why I couldn't meet my goals of seeing my youngest raised. He also stressed one of the most important things I could do is exercise (CU docs are big on exercise).. I went to MDA for an RO who has an off protocol treatment. I follow up with him next week. He was very optimistic at our first meeting, before progression. If he has changed his mind I might as well be home and save my travel money.
Lita you are my hero. All of you are my inspiration. I have admired you all from afar for months and am so glad I finally had the courage to reveal myself online.
Prayers and hugs for all,
Mary
PS dlb my onc is actually a woman...
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nkb how awful. I'm glad you didn't listen to him.
My mom was that way too. She would fight to the ends of the earth She has dementia now and I don't want to upset her with all of this. I have to learn how to stand up to all these doctors.
Take good care,
Mary
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Mary, those are terrible things to be said to you, wow. I wonder though if you saw my MO at MDA, upon biopsy confirmation of my bone met, I asked if surgery was still part of the plan, she said "we don't usually do breast surgery on metastatic patients because what's the point". I reiterated my expectations and she got better but her social skills are definitely lacking, fortunately, I just need her to do her job, nothing more.
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Mary the stupidity of some people astounds me sometimes just chalk it up to that . None of it is true these kinds of folks need to be shown the door. We have enough crap,going through our minds all the time we need love and support and that's it.
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illimae, I'm tired of "what's the point". When I learned my original oncologist lost my first bone scan (two small mets to bone, six months left untreated after they lost the scan) her nurse told me "well it doesn't matter anyway in your case). I lost so many options. It certainly would matter if it were themselves or their sisters or daughters. Glad you pushed for removal. At this point we all have nothing to lose and our voices should be heard
Take good care,
Mary
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Amen Wendy.
Mary
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Mary, when Dani's liver progression turned from 2 to innumerable in 4 weeks, her new super acclaimed Onco told me Dani really should get her affairs in order blah blah, and i was like what you talking about??? I am like no, we got a lot of work to do. Well, after that visit she changed her dialogue to - of course we are always looking ahead to new tx. Yep. It still boggles my mind, that these so called people that work in this field, still don't realize how people could live with pain, lack of sleep, memory loss etc..and the will to live till it's just impossible will make it possible to live alongside this beast.
And Lita said it best, NO they won't be who they were when you are around. People are funny creatures, they adapt, but that does not make you substitutable (is that a word??). And you are all right, Mom was 95, what if I tell you I think about her every day like a teenager?
The hardest still, is when family or so called friends negate your feelings, or pooh pooh it away, that deserves roid rage.
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Momallthetime, just wow. Our will to live is our strongest weapon and no one should deprive us of that.
I admire how strong Dani is and how you stand in the gap. prayers daily for you both.
Mary
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mary - the therapist is the smart choice of a fighter. you will be at this a long long time.
>Z<
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Marylark I am so angry at your MO and pastors wife !!!!!!! I had some infusions today and my MO came into the room and said all her patients are unsung hero's. Then I listened to a nurse on the phone. She called three or four people trying to get action from insurance on coverage for "keytruda" It was obvious from the calls that the patient had run out of options and was very ill. (The infusion room is very small so it's hard to miss conversations. )
This is my long winded way of saying that you have been fed a line of BS. It is never time to give up! Find friends and medical people who will fight for you. They are out there.
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Brain MRI on Wednesday. I'd be lying if I said I wasn't scared stiff. I'm smelling cigarette smoke constantly and I don't smoke. Nor has anyone smoked in my house for decades!!! That has me spooked more than anything else
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Gracie, praying for you. Try not to let your mind go there.
There are other things besides brain tumors that can cause that.
My friend Irene had something very similar to that...smelling strange odors all the time when there were none. it had to do with her something in her nose. A little surgery fixed it right up. That was more than 10 yrs ago, and she's still fine.
I know it's HARD not to dwell on it, but try not to freak out way before the test like I did. Getting myself into a tizzy did NOT change the outcome, and I could have benefitted from a little peace the week b4 the test.
Keep hope in sight,
L
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Gracie when I start doing what your doing ( which I'm sure we all do on a daily basis) my husband looks at me and says stay away from the dark side always stay in the light it's nicer here
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Lindae. Wow. Congrats. Glad another chemo tx in the book.
Hello all
¡
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Mary when I was first dx with progression my mo at that time didn't really hold out much hope. I took myself to MSKCC to my current MO who really is in my corner. You need that too!!!! And the pastors wife-what a jerk!!! Some people are just STUPID!
Gracie try to stay positive. Wendy's husbands advice is right on!
Bavs
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Patty - waving hi!
Gracie - will be thinking of you tomorrow! I remember GG27/Dee experienced that smell smoke and brain was clear. Can't remember though if they ever found the cause.
Talking about smell, this is funny but since I started chemo I feel like a bloodhound. I have such a super sense of smell it's unreal. Sometimes I wonder if they're real or imaginary.
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Thanks everybody! Am trying to stay positive on this, but this smoke smell is very strange!!!
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When I was doing ACT when I was first diagnosed, everything smelled like dog poop.
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Cive, that's what has me spooked. When I was first diagnosed last year I had this smell. Then it went away after I started treatment. Now it's back. I wonder what else it could be
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Lindae. Waving. How are you feeling today ?
Wow I am amazed there are still over 12 MILLION people in Florida with no electric and no idea how many more in TX. Hoping all our bco sisters are safe.
Hugs
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It's unbelievable how insensitive people can be! I've also had friends, all very well intentioned, telling me my daughter will be fine (she's now 8), while I'm praying & fighting to get her through school, and university, and marriage & grandchildren... And I'm 45 & I still need my mom every day & would be broken if she wasn't around for me - so how on earth will my daughter be "fine" if she loses her mom as a child?
A good friend of mine lost her husband in a car accident recently, her 3 small kids are "fine", they're coping at school & spending time with friends & carrying on with life because that's what we all have to do, but she cries herself to sleep every night because they miss their dad so much & he's not there to kiss them goodnight.
Chins up all of you, we have to push on regardless :-)
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Karz,
Stay strong and be here for your daughter. Find people to affirm your goal.
I wish people didn't feel the need to speak into our lives.
Praying for you,
Mary
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Thanks Everyone for your encouragement this week. I'm going to MDA on Monday and am going to have a frank talk with my onc. Making my list of talking points. I'm certain I will be changing doctors, but not sure of my next move. Lots of work and prayer to do.
You are amazing women.
Mary
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Mary - In my opinion, it is not your job to fix that oncologist. Find a patient ombudsman and just say, you are moving on to a different onc. Tell the ombudsman that MD Anderson needs to find you an onc that thinks he/she can get you many years, because that is your plan.
Let the MD Anderson do the work to fix their blunder. Sounds traumatic to confront that onc. I am not sure he/she is worth your time. We have to conserve our energy for many fights and I just don't think this loser is someone you should waste energy on.
>Z<
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Mary, yes, I agree with Z. These oncos are NOT going to change their bed side manner just for you. Their personalities are set at this stage in their lives. They will continue to be and act they way they do. Don't waste any more of your precious time.
Just move on and get a better onco in your corner.
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MRI done...now the waiting
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Just FYI, in general I agree with the above statements, except that my MO is young, probably not quite 30 yet. At first I was thinking, cool, this girl has been buried in books instead of dating and partying in college, then I realized maybe she needs more interaction, less books. I decided to let her know that a warmer approach is appreciated.
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Thanks all. I'm not dealing with her bedside manner. I have action steps I want her to take. If she is unwilling I am out the door. I want her to do the best she can to find out the biology of my cancer. I need to know this for the future. I want her to explain her thinking on my treatment plan and what avenues will be next. I want her to understand that I am an active participant in my treatment not just a person to pat on the head and tell to be good. I have a reason to be at MDA and it isn't this onc. If the other doc (radiologist) I am meeting with offers no way forward then I'm leaving. He was the reason I went to MDA. The oncologist is just the person I was assigned to get in the system.
I can go anywhere to walk through the standard protocol. I thought MDA would be more cutting edge.
Take good care all,
Mary
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MDA is generally good, they are just big. You can find a good person there. You can also find a good person elsewhere. Whatever is easiest and gives you peace of mind.
With your determination and that well conceived plan, you could even turn that onc around. Go for it.
>Z<
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