Bone Mets Thread
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Hi,
I had 16 rounds of radiation to my pelvis. I have had three injections of Falsodex (2 weeks apart) and now I will be getting the injections once a month. My oncologist always does blood work and tumor markers. My original cancer was ER+, and I had six positive nodes. My bone biopsy came back 5% ER+ so they are treating me as if it is the same cancer type I had before. It seems that my tumor markers tell the story. My onc said I was unusual because I only have one met.
What is your treatment plan?
Lisa
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Ellelou, your grand daughter Ruby is an adorable pumpkin. She looks so great. Myra
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To all, thx so much for the kind words.
Rachel - someone is havg a gr8 time, such an idea! Ellen, she is just adorable!! And thanks for the lightness in the air with the picts. Dee-Terre.
LovesM are you in a large Cancer Center? It's truly frustrating, we went thru this, whenever we needed something explained Onco was so obnoxious - what a fool. I keep reading these medical books and it goes totally against the grain. They forgot the "doctoring" part. Agh! It must have been really tough being free of this monster and then,,, No words.
Every night when I wake up in the middle of the night, I dream all the words I wanna write to this so called biggie, snob in Sloan that was cold, cowardly and all you could imagine.
Rachel, I know, my daughter also tells her docs she just wants to live, she has these 2 adorable little ones, she does so much for them, it's just insane. She is so young, and when she gets up from the chair she feels like an 80yr old. It's a real mix - from all the research that I try to find out, everyone has different ways how things happen to them or how they react. Some have pain all the time, some just once in awhile, some have TM through the ceiling and the scans are not so bad. For Dani it was always Pet/CT and then MRI to confirm for radiation purposes. Don't take it the wrong way, but maybe they could give you something to alleviate some anxiety, there is stuff that one could take that you don't have to feel like you don't know what's going on, but just helps you cope easier through the day. It's tough.
Warm Hugs everyone...
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To all of you discussing alkaline phosphatase up thread---
I didn't know what that was and since my MRI 10 days ago showed mixed results (some smaller-some bigger spine mets) I thought I should look at my alk pho levels. So I pulled all my bloodwork and my alk pho before starting Ibrance/Femara was 124 in June. It was 118 in July, 111 in August, and 97 on 10/21. So thank you ladies for making me feel better about my scan results. BTW-my MO doesn't follow tumor markers.
Stage IV Forum is awesome.
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lisajo,
I was dx'ed with a single bone met about 6 weeks after my bmx and a stage II dx. No symptoms, and it's a long story, but the discovery was accidental. 4+ years later, after 15 rads treatments and taking AI's (originally Arimidex and now Femara), the bone met is necrotic and I have had no progression. I also had 16 Aredia tx spread out over 2 years. It is unusual but can happen. I am also a teacher (first grade) and save for 3 1/2 months at the very beginning, have worked ever since dx. I am on my feet all day and tired when I get home, but I love my job and sleep like a baby. Wishing you the best.
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I also watch my alkaline phosphatate very closely. It was 444 in the beginning and now down to 93 which falls in the normal range.
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blue frog, your kids are beautiful. I'm so glad that you are doing so well! Ellelou, ruby is simply adorable! Mom all the time, I know how much I worry about myself with this disease,if it were one of my daughters, well I can't even imagine. My mother can though, my only sibling, an older sister was diagnosed with chronic progressive multiple sclerosis at the age of 19. She gave birth to a beautiful girl at 22 and died at the age of 32. Her daughter, is my " oldest" daughter. I can relate to Danis sisters very well. My Mom is a very strong person. We lost my Dad to cancer in 2004. Now my dx. Last week i was feeling happy and hopeful. This week sad and scared. I just can't get a grip on my thoughts and emotions. Rachel1- you have been through a lot as of late. Take it easy on yourself. Patty, nice to see you posting, I'm one of the newbies. Dee, you are a gifted Gardner. Beautiful landscaping. I love to see all of the pics being posted. Life going on with mets! Hugs to everyone
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Travelling all week and hard to keep up when reading on the phone but had to say Ruby is adorable. Made me smile ear to ear!
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Chelle - Sorry you're feeling sad and scared this week. It can be an emotional roller coaster at times. For what it's worth, those emotions still come and go but less frequent now for me. Praying you feel better soon.
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Hello, all,
Been off the boards for a little while. The "crazy bone mets" started to mess with me again, this time non-stop. I had rads to my sacrum - 3 fields for 10 tx. Pain is better but still fatigued. My complete blood count is in the dumpster - pancytopenia - all numbers below normal but Platelets dangerously low and hemoglobin dangerously low caused by the medication routine and the research drug. I find out today if I can get a transfusion of platelets and remain in the clinical trial. I've showed no progression of the innumerable metastatic lesions through my entire skeleton for 11 months! Hope I can stay in the trial. I'm not NED but stable. Was told being NED will never happen for me because of the extent of my bone mets. Still no mets in my visceral organs.
Someone mentioned difficulty with Xgeva injection. I give denosumab injections as a nurse practitioner. some tricks to make it more tolerable: completely relax your arm, let it go limp. Be sure the nurse is giving it in the fatty tissue (subcutaneous tissue or the fatty part of the mid arm in the back (if you have any, I have a lot of good flabby, fatty parts on my upper back arm!). Have them give it very slowly and make sure the drug isn't too cold. I get this shot every 4 weeks as long as my calcium is within normal limits. If your calcium is too low it should be held.
Some questions for the group: How do you not let this darn disease and the crazy bone mets not take over your life? I have been back and forth to the hospital (1.5 hr drive away) daily for almost 3 weeks. After 9 months of what i considered easy it's overtaking my life, I can only see patients for half days and now working part time instead of full time. this is the first time in my adult like I haven't worked full time.
I work as a nurse practitioner in a new osteoporosis center but I also see primary care patients. With my now increased visits to the cancer center so far away, scheduling my patients is a night mare. And now, with my counts so low I'm severely fatigued and at risk for infection do to low WBCs and I see sick patients that are contagious! I love my job and my patients. I also need the insurance! Between rock and hard place. I know I need to slow down and maybe get some anxiety counseling but trying to schedule it is making me more anxious! This is what I would tell my patient to slow down, & get counseling for the anxiety, just can't fix myself. LOL. viscious circle.
Any suggestions would greatly help. I live in New Jersey and I'm only 18 months away from Medicare (I'm 63 1/2years old) . I've never looked forward to getting older before - but getting Medicare may make it easier to work more on an as needed basis.
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wow rnsparki
It does sound overwheming. I have disability from my employment that continues my insurance (at some cost)and allows me to stay home. I do wish this was an option for more women. It is not as much as I made working but doable. I am spending down some retirement savings as well.
Your wisdom for your patients will work for you. I am thinking of you and sending healing thoughts.
mary
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Hi ladies.
Got my 4 shots today plus bloodwork and here I am at work for half a day. Ugh. Had a wonderful weekend w my sister but now I miss her already
My WBC are down to .6 so she's holding off on the Ibrance until Thursday and even that will only be 75 mg and for 18 days only. She said my lowered counts might have me feeling fatigued. Definitely. My right leg is in pain and I'm a little nauseous. And my car is making knocking sounds and when I brake, almost a grinding sound, yuck.
I did enjoy trick or treating w my son. He was a little dinosaur. My daughter was a witch and DH took her. My sister handed out candy.
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Rnsparki- 2 ideas: 1) COBRA if you stop working or 2) Marketplace insurance. I hope these help and I'm in the same place in terms of having to work to keep health insurance except I'm 38. I know it sounds stupid but I too also wish I was much older. I wish my kids were grown already so they can take care of themselves and wish I could have Medicare.
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Ooooo, Cristina... don't like the sound of a grinding noise. If you need brake pads, it's far better to find out ASAP, before you damage and have to replace the rotors, too, which is a lot more expensive. Trust me, I've learned this the hard way!
msparki, I really feel for your situation. If you're finished with RT, how often will you have to make that 1.5 hour drive now? There was no way I could do RT @ UCLA (3 hrs. o/w) back when I needed it in 2008, but they were able to refer me to a rad onc at a local hospital who had done her residency at UCLA. She turned out to be wonderful, and because a rad onc who had worked with her @ UCLA referred me, there was no question in my mind about her level of care. That's all I can think of... Can the hospital doc(s) you see possibly suggest someone more local for at least some of your follow up? Even now, I have a local onc I see monthly, so can extend time between appts w/my UCLA onc to 3 or 4 mos.
And thanks for the tips on Xgeva shots!
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Ruby is adorable!! Just had to say that!
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Thanks Deanna, I will look into brake pads ASAP, pretty sure that's PART of the problem.
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ms parki,
I am struggling too. I'm so exhausted I feel like the life force is draining out of me. I am a teacher and work part time. I don't want to leave my job because it's the only time I can get out of my head and pretend I'm normal. But I am so tired. I'm six weeks out from rod in my femur surgery. Had rads in July and August. I so want to feel normal!! I'm on faslodex. This is such a struggle and such a head game. Rachel
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hi msparki- I am new to the group just was diagnosed a couple weeks ago. I think you are remarkable in what you are still accomplishing at your age with everything going on. I'm still sorting it all out. After 18 years and thinking I was cured I never really thought this could happen. I'm also 63 and the met in my prox femur has me in a bad place. I want you to know that I read all of your posts. ILC is the one BC that goes to the bones more than other. Thanks for tip on shot . Caro
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Cjanet. Sorry your leg is in pain. I think you're a remarkable person doing all that you do with so much going on. Thinking of you. Hugs.
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rnsparki - Gosh, you have a lot on your plate right now! But so happy for you being stable and pray you can remain on the clinical trial. Did you get the go ahead for a transfusion today? Perhaps your body is telling you to slow down temporarily? Your devotion and love for your patients is truly inspirational, but you are your number one priority right now. That is probably what you would say to your patients LOL. I hope you can find a balance after your 10 tx of rads. That on top of everything else can be overwhelming. Do you have access to a social worker or counsellor at the hospital? Anti-anxiety meds are of a great help to me at times. OK, I'm rambling on. You will be in my prayers and thoughts. Keep us posted and big virtual hugs coming your way.
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Has anyone been on Afinitor ( Everolimis) Side effects?
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Lindalou, why asking? Are you going on this next? I haven't been on it, but it was one of the options proposed when I progressed on Arimidex. I chose Ibrance/Faslodex instead, but that option is probably going to be coming up for me as well.
I walked from the car place to work today! It was beautiful out! I will get a ride back to the repair place once they are done, but it was nice to get a workout in. I hope I won't regret it later.
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Lindalou
I am starting Afinitor this week. I am nervous about listed cardiac SE and trying to double down to maintain a healthy lifestyle. I would love to hear from others their SEs with this drug.
Linda has winter showed up in WI. We had mountain snow this week. I hope to cross country ski this winter.
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I generally don't post much here, because I always assumed that everyone here had been around the block and had more experience than I do, but after catching up, I realize just how many have swelled the ranks with diagnoses from within the last year.Somebody made a comment about it seeming as if people with minimal treatments do better...I wonder if that's true and if anyone has done a study on that? Do we have light treatments because our disease is controllable, or is our disease controllable because of the less aggressive treatment? As anyone seen any articles?
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Milaandra I haven't seen any studies as of yet regarding your question. Having said that I would say I'm one of the new cases where the treatment has been very minimal. I was diagnosed in June stage four and after all my scans were done it was decided to treat my cancer with adjunctive therapy. No surgery, no chemo, no radiation just hormone blockers. The no chemo part I was told was because of the type of cancer that I have wouldn't respond to well to it. I'm thankful now.
So I carry my little tumour around with me and see when it shrinks and when it grows. Scary mostly lately it's been shrinking thank goodness. Onc appointment tomorrow I'll let you ladies know how it turns out. As always nervous before..
Wendy
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Hey Milaandra, nice to see your post. I don't think any of us really have more experience than you do, we're all just taking it day by day and learning from each other. Your question is very intriguing to me and the reason why is because my mother--in-law had metastatic breast cancer, stage IV right out of the gate and she had no treatments, not even an anti-hormonal because they never new the receptor status of her cancer. That was primarily because she didn't want it tested but honestly I'm not even sure they suggested it at the time. She had mets everywhere and did very well for many years and died of something totally unrelated. Basically all they did was control her pain and she did have rads once to her breast as the tumor had broken through the skin. So in her case she had light treatments and did very well but was it because her disease was controllable? I don't know but she amazed me everyday on how she lived in spite of all she was going through.
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Milaandra,
I also have had minimal tx. I did have a bmx but about 6 weeks later my bone met was discovered, so planned chemo was scrapped. Rads x15 killed my single bone met and all I've done is AI's since. The bone met was biopsies snd it was grade 1, so we know it's not aggressive. Both my primary and second opinion mo said I could do chemo, but said that an AI was a good option. I went with the AI and have been NED for over 4 years. I figure chemo will always be there when the AI's fail.
Whether this minimalist approach is the reason I'm doing well is unknown. I haven't seen any research that addresses this.
Caryn
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Hi ladies,
My newest CA15-3 and CEA are 49 and 23.9, respectively. In September they were 63 and 26.7. Is this about steady? Does this mean the cancer is just staying the same, no response, or the treatment is keeping it from growing larger? I am having so many doubts and anxieties and issues in my life right now.
I hope everyone is doing well today. Weather is beautiful outside, 70 and sunny in November!
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Cristina, I was told @ UCLA that many women actually see an increase in TMs for the first several months after starting Ibrance, before they start coming down. So I would say the fact that yours are down -- although maybe not dramatically -- is a very good sign. Mine did something similar (CA27-29 from 307 to 297 to 263), which seems so slow, yet my onc seemed very pleased. Besides, 63 to 49 is actually a fairly significant decrease -- 22%!
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Thanks Deanna, what I wanted to hear today! :
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