Bone Mets Thread
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I got the results of my first set of scans and its stable after 4 months of Ribociclib and Letrozole, she also said the tumor marker test would no be reliable for me because it's always been in the normal range, she said they just don't work for some people? I am a bit disappointed its not NED am I being a bit silly she did say its a good result?
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Hey Sunni,
I think stable is fantastic! Give it more time.. hopefully NED is right around the corner. 🙏🏼🙏🏼🙏🏼
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thanks All,
Rk2020
Star2017
Joyner
I am wondering if any of the shots medications will interfere with surgery if I decide to have it. I still am walking on crutches so walking after the shots will be limited. I have pain in right upper thigh…so wondering how the shot will feel. How soon did you all start taking Ibrance
I really feel I am not knowing much at all except that I will take Ibrance
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Positive2Strong, will you be undergoing radiation?
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Positive2Strong, I had hip/thigh pain at the top front of my leg when I began the fulvestrant shots. I do think I was a tiny bit achier, but it wasn't obvious.
But generally, my tumor site pain resolved mostly with radiation.
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star 2017
I already had 10 treatments of radiation
I stil have pain, some days not as bad.
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Im sorry it didn't give you more relief, Positive2Strong. Hope the pain eases soon.
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I am very grateful any time I get a stable scan. Don’t let yourself be robbed of feeling good about being stable. I learned to savor stable results and let myself breathe a little more freely for the next six months or so till next scan time.
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Positive2Strong - My timeline was like this…first Fulvestrant (butt shot) and Zometa infusion (bone strengthener) on March 11. Femur rod surgery on March 24. First day of Ibrance on March 27. In hindsight, I would have put off starting Ibrance for a couple of weeks after surgery. My oncologist didn’t want me starting it before surgery but thought right after was ok. My body needed time to mend. Although many women tolerate it well, 125 mg Ibrance was too strong for me. After 14 days on 125 Ibrance, I had to drop to 100 and then 75 mg. My femur healing process was definitely impacted by the strong dose of Ibrance. Once I was lowered to 75 mg, I healed very quickly.
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buttonsmachine - you mentioned that you were worried that your tumor at 12 cm was too large to be help with radiation. My tumor on my clavicle was over 7 cm and I had radiation that finished in March 2020 and when I had my next scan in July 2020 I was NEAD! I hope you get the same result but at least get some reduction in size and get it under control. Keep in mind with radiation that the cancer doesn't die immediately. It dies when the cells try to divide so the slower your cancer grows, the slower the cancer dies.
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RK2020
And othersTomorrow I get the shots of Faslodex and one shot of xgevia.
Still dogging the surgery on my thigh bone. I have pain there so concerned about the shots tomorrow making it worse.
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Joyner L
Thank you for your advice and concern. Are you still getting monthly shots.
I was feeling better, less pain in leg and then today, I have more pain.
I do not have Claritin but I do have Motrin
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I am being silly about being stable, it is a good thing, normally I am extremely optimistic and upbeat, so it was an odd reaction from me. Anyway, things could be worse a friend of my younger daughter who is only 28 had been diagnosed with a brain tumor it took them 8 hours to do the operation. Good luck to everybody.
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Positive, I'm no longer on Ibrance and Faslodex. I am still on Xgeva, and I'm likely to remain on that drug. 31 months ago, after 23 successful months on I/F, I had some progression and have been on Xeloda since. I believe that the effectiveness of Claritin is based on its allergy-relief properties rather than on pain relief. Others can speak to that. Good luck! You can do this.
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Positive 2Strong - how long ago did you have radiation? My pain relief from rads was not immediate. It took a full 6 weeks for it to get better. And I think I saw continued improvement a few weeks later.
Sunnidays - congratulations on stable. It’s a great report to have this early. Also it means you can continue with your current meds to give them more time to improve your condition.
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Positive2strong - I had the same surgery that you are having and that RK2020 and BevJen had. My met had eaten most of the femoral neck and ball of the hip joint. I didn't get it cleaned out as the tumor consumed most of the bone. I had radiation post-op and that did help the pain. The surgery was a bit emergent because they felt the fracture risk was so great. You've already gotten a lot of good advice here so I won't repeat it. It's a big surgery. I would say the first two weeks are the hardest. Just learning to balance and do all the necessary daily things after surgery. Keep up with the pain control. I can't remember who said it but the more you work through mobility and keep it moving the better off you will be. I had my surgery in December 2019 and by March was walking without a cane. I do still have some residual pain from time to time but I was out of shape going into surgery and it is better the more I stay active on it and stretch it. I have an active job and have been able to return with very little issue at this point but it took a good six months getting there.
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Go Kale
My last radiation treatment was one week ago. Yesterday I had very little pain and I thought it was improving but today back to pain.
I had to cancel my appointment today for injections as my husband fell.
I didn’t feel great anyway. They rescheduled it one week from today. Today’s appt was early and I’m not great in the am next weeks is at 4 pm so that is much better for me. My husband is worried a week is too long. Also I am not sure I should be on medications if I have the surgery.
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Positive2strong, fulvestrant and xgeva are not usually needed to be stopped before surgery. Your surgeon's office would confirm it - I suggest you call them and give them those two drug names. Usually they're only concerned about blood thinners & some blood pressure and diabetes medications. Call the surgeon's office and give them the list of meds, their prescreening nurse will go through it.
I hope your husband is feeling ok after the fall!
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cowgal, thank you for your words of encouragement! That is exactly what I needed to hear today. I'm starting radiation this afternoon, and I'm hoping for some relief.
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Moth,
Thank you they called me to pick up Ibrance and said I could start that.
My husband is sleeping almost all day with ice packs0 -
sunní days - yes, tumor markers are not reliable for everyone and some doctors don’t use them
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Hello all.
Catching up on reading about folks' intervention histories and current weather. I met with my MO for the first time yesterday, and have been in a tailspin. My youngest brother and biggest fan took me to the appointment yesterday and point blank asked him about my prognosis. MO turned to me and asked, “Do you want to hear this?" I said “Yes" and listened to him say “months, a year, maybe two."
And you know, I knew. This cancer has been moving so fast and last week's PET scan had my entire spine and rib cage lit up like a Christmas tree. I can feel the “very concerning" (MO) thoracic mass that's been so painful, and the pelvis area which is making walking on right leg tough.
I know no one knows, and stats aren't truth (or God), but please help me with words of hope. I see you go through so many procedures and various interventions, and I'm just starting on the road. I don't feel I've got the strength (mental or emotional) to do it. Life has already beaten me down the past 3 years, and getting up gets harder after each punch. I'm alone and support is low. How am I going to get through all of this? I pray my never wrong intuition is skewed due to fear and lack of info. *sigh*
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Did your MO prescribe anything yet. What city are you in. Did you have radiation yet.
Hang in there
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Im so sorry to hear of the pain and struggle you all are going through. Prognosis- a lot depends on how you respond to treatment. If you're Stage 4 at diagnosis and never been in treatment, stats are a little better. If you're HER2+ and respond to treatment, stats are a little better. Stats are a little better for ANY subtype that responds right away to treatment.Hang in there - stats say what they say but we are still individuals. Take it one step at a time for now and see how your treatment goes
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Moderators,
I have updated my diagnosis but it does not show up. What am I doing wrong
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Hi Positive,
So sorry you are going through so much. It’s so tough at the beginning but I sincerely hope things improve soon.
You may need to go in to set it as public. The updates are private by default.0 -
Endora, we know so little about you; can you say if you are dealing with hormone positive or negative bc; and what treatment options your oncologist has given you; if the metastases is confined to just the bones or elsewhere, too. Is this your first go-round with bc? Are you in the U.S.?
Some oncologists will not give you a timeline or expiration date. Does your oncologists specialize in cancer of the breast? Some doctors don't realize there are more women these days living a long time with metastases.
The day I got the news, my oncologist said very firmly, “With treatment, you could live years." I have always loved her for presenting it to me in that way, and that was 10 years ago.
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Divine Mrs. M,
Keep posting your story as it gives me hope. I start Ibrance tomorrow and then my shot on next Monday.
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Hi All, I have not been on for awhile and thought it time to check-in!
A year and a half ago, I decided that I was not happy with my quality of life. So I went off all treatment for a few months and then started Exemestane, tolerable, but did nothing. Then Tamoxifen, intolerable. So we did Foundation One testing and are waiting on results to determine future treatments. I have burned through several treatments and have very few that I am willing to try left, but I have made peace with that.
In the meantime, we have taken our horses and are traveling and trail riding mostly out west! I feel like I have finally been living instead of just existing! This is what I dreamed of for years! We have met so many wonderful people and seen so much beauty in our country, I will never regret it ❤. Doctor visits have been tricky, but that's OK, I am over those also. I get scans whenever I feel like it, instead of every 3 months.
I am still bone Mets only and I'm 9years and 3months from diagnosis!
There are too many wonderful people for me to personally acknowledge but, you know who you are! Please know that I pray for you everyday!
Happy trails to you ❤,
Claudia
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Claudia, that sounds wonderful! I'd love to see some pictures of your trail rides and your horses.
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