Bone Mets Thread
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Hi Miss Rabbit...my bone scan didn't pick up my tumor either. So I assumed I was in the clear and went on happily for another couple of months (with pain) thinking it was only a bad case of sciatica. Finally went to an orthopedic doctor and he did an MRI which found it (I got the results in my portal on New Year's Eve...yay me!). PET scan confirmed it.
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I don't get any of this kind of detail you all get.... and I am now getting stomach problems and pain from GEMZAR chemo......am thinking of giving up as it feels like this will only end when I die and I am not getting best treatment information at all....tired of battling.... been in Emergency room three times from last two chemos....
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Lily55, I'm sorry you're going thru this. I always ask for copies of my scans, some of it I don't understand but I compare them to the last one's and it makes some sense. I've never heard of GEMZAR but maybe someone here can help.
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Lily,
I agree with Peaches. I always get copies of my reports, and in fact, now I've started getting disks with my scans on it to facilitate getting second opinions if need be. Also, if you are not getting satisfactory answers from your oncologist, have you considered switching? It is a big pain in the butt because you have to switch over your medical and treatment records, but it's better than not getting info from your docs.
Good luck.
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Thank you I always ask but am refused. Health care here is free BUT I can't change oncologist or any specialist.....it's very frustrating....
I would feel happier with copies of scans and reports....it's hard work.....
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Bone Mets online questionairre study and if you are chosen to participate, you can receive a $50 gift card!
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Feeling very lucky to share that I just passed my 4 year mark since diagnosis (denovo stage 4). I am grateful to have access to top doctors and meds, to have people here and in my home life who support me, and to have choices to live and thrive in ways that are meaningful to me. Most of all, I know that I am lucky, so far anyway, to have a cancer that is responding.
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Jensgotthis,
Terrific news. Four years -- that's terrific!
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Jensgotthis - that is great news! I am so happy for you!
XO
Andrea
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Hello
New here I'm Cazzy I have boney mets awaiting resukts frkm first scan since diagnosis it was on lumber thorasic abdomen etc xx
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Great news, Jen!!
Good luck, Daylight. Let us know.
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Jen, Congratulations! I think about you every time that I use the wig care products that you graciously sent to me. Fortunately my hair has now grown in enough, about 3inches, that the wig is history, for now. I am truly happy for you. HUGS
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Sucks Philly, thanks for the link but I'm inellible to participate. I've had radiation on my spine, strike 1, and I have compression fractures, strike 2. Oh well
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Hello Daylight...welcome. Sorry you’re here...but so happy you’ve found this awesome group of ladies full of love, support, and a wealth of information! I see you’re newly diagnosed. Please know that it is not a death sentence! They’re women who are going on 20 years living with this disease. Please keep us informed of your future reports.
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Hello all. I have not posted in a couple of weeks, but I follow along.
Way to go Jen !!!! Woohoo !!!!
Welcome Daylight.
Hi Snooky and Joyner. Good to see old faces/names.
Nothing new here. Appt with onc in Nov with no real new info. We discussed the good PET report and tweeked my plan of care. Had increased Xgeva from quarterly to monthly with the pain complaints I had, but with the PET results(no uptake in bones) we dropped the Xgeva down to quarterly again. I am ok with that. Do not want to develop ONJ. My aches continues. Oh well. We do another CT in Feb so just continuing with Ibrance/Letrozole/Lupron and Xgeva now quarterly.
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Great to see the good news in this thread. Hope the New Year will be kind to us all. xo
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Jens, thanks for sharing your great news!
Question: Anyone have rads to sternum? I've developed an intense, constant pain in my sternum area that I strongly suspect is met-related. Advil and Tylenol doesn't touch it. I've contacted my Palliative MD for pain and MO to see if I can move up scans, but trying to plan ahead. I don't know if proximity to heart is a mitigating factor. Shoot, I thought I could tip-toe past the holidays this year...
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Hi Jaylea, I had rads to my sternum and left lateral rib cage in 2017 at the same time. I had some fractures in my ribs due to exercise lifting bands of all things. It was a easy radiation and the side effects were some nausea and fatigue. I have never had them come back, just elsewhere. So that is a plus 😉. Good luck!
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Hi Jaylea! I also had rads to my sternum 7 years ago - one of many areas they radiated since I literally had metastasis everywhere - ribs, pelvis, etc. Mine were pretty intense - every day for three weeks - and it did cause inflammation in my esophagus and made it very hard to eat since everything burned going down. I think I lived on smoothies. However, it zapped it all- I guess that much radiation usually does, and I haven't had any progression in any of my bones since then. I hope you can get your scans moved up so you have some peace of mind! Keep us posted.
XO
Andi
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Thanks Andi and mediclisa, I've got scans scheduled on the 17th, and tramadol for the pain in the meantime. Will keep you updated.
Wishing everyone a lovely holiday season ~ JL
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Question for the group---
Can one use a TENS unit for pain unrelated to cancer? I had read on here once that TENS not to be used with mets.
Also, how about heat or ultrasound therapy??
I have low back issues unrelated to the cancer and ortho doc said we could do Physical Therapy but no TENS, heat, or ultrasound with PT due to the bony mets.
Does that sound right?? I had read on here that the cancer doesn't like heat so some are using saunas or hot tubs.
How do you know what to do??????????
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SHOOT, Candy...yesterday, for the first time in my life, I saw a chiropractor for lower back muscle pain, and he did ultrasound. Was that wrong to do?? Yikes!! I have another appt tomorrow afternoon. Should I hold off the ultrasound?
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Joyner- Who knows!!!!!!!!!!!!!!!!!!!!!! Seems the more I go to doctors the more confused I get. Maybe my doctor (ortho not onc) was the last in her medical class !!!!! I am going to ask my onc next visit what SHE thinks about TENS, heat, ultrasound. But will she know???
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Oh, and ortho doc said NO to cortisone shot too since White Count with Ibrance use is currently 1.7. NO to pain meds since they are excreted by the liver and I have the liver mets. So came from the ortho appt with no recommendations for the back pain issues. Gotta love it !!!!!!!
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I don’t even know what TENS is!! Onward to Google....
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Well there ya go. I have used TENS before the cancer and it helps the pain. Whelp not to use anymore.
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Good Morning,
I was just DX with bone Mets Tuesday. I see MO on Tuesday and am unsure what to ask. I was devastated by the new and couldn’t stop crying. Am currently doing Tecentriq & Abraxane for treatments as other treatments were ineffective. Triple negative in the clavicle lymph nodes and bones of clavicle. Any advice?
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Geez kitkat, I remember you from the brief time I was in the October chemo thread. So sorry to see you here, how did they find the mets? I thought you had a clean MRI a few months ago? I guess it just goes to show what a crap shoot this whole breast cancer thing is.
Someone with tnbc mets will come along sooner or later, but I wanted to say hello as I remembered you and what a tenacious ride youve been on all year. What a shock.
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hi KitKat
I’m sorry to have to meet you here. I also have triple negative bone Mets. I was first diagnosed in 2000 with stage 2. For the first 18 years my cancer was ER/PR +. This past summer my dr determined that my pathology has changed to triple negative.
My met are mostly hip and femur. I became Stage 4 in 2015. For 4 years I felt no symptoms. This past summer I started having pain in hip which was determined to be Mets.
First of all I want to tell you that I understand how shocking it is to get a stage 4 diagnosis. I remember. I still cannot believe it. With that being said I want to tell you that there are soooo many treatment options available to you. Do you live near a large cancer hospital? Top notch doctors are key I believe. These top notch hospitals usually have many trials going on. These doctors are cutting edge.
Finally, stage 4 is incurable but most people have many more years than they realize. Good quality years.
Don’t give up and go to the best facility you can find.
Susan
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