Bone Mets Thread
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I feel dumb for asking this but what does NED stand for??
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No evidence of disease (at the time imaging was done).
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Syrmom - I think that swelling can be a side effect of the taxol. Not sure about the radiation. What did the Onc say?
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A little more than half way through radiation to spine and hips. Soooo tired. Blood counts getting low. WBC at 2, rbc 4, and platelets 118. Anyone know how far we let them go down before taking a break? I've got 6 more sessions to go. I think the A/A combo is contributing too.
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Romansma: Sorry you are having such a time with all that radiation. I just completed ten sessions for C4-6 and can't say that it caused me a lot more exhaustion than my usual feeling tired come afternoon. I never even had blood work done before radiation nor after radiation. It must be because you are also having your hips radiated also? I was on the A/A combo from Feb.-April of last year and that was a med that truly caused me to feel exhaustion after a month. I had to go off it after a PET scan after three months use showed it was affecting my lungs. I was off all meds for almost a year and started Xeloda this week. So far no side effects but from reading I know they are coming. So maybe for you it is a mix of radiation and A/A. Are you drinking lots of water. I hope you get some strength back soon.0
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thanks Suecolo2. It could be the Afinitor, I have no way of knowing. Although, the radiation I'm taking is C2 - T3 and hip....a pretty large area. I guess I will know which it is when rads are over.
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Romansma - sorry you're going through this. I only had one rad to the hip/femur and five to the spine, but it left me beyond exhausted. And it took about three weeks after radiation to stop feeling exhausted. When I had breast rads, I was tired, but felt better about two days after finishing. However, I'm told that the rads for Stage IV cause the fatigue to last longer. Of course, I'm still tired all the time anyway, but it was way worse with the radiation. Fingers crossed that you bounce back once it's done!
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Hi, all. I think I have met most of you on other threads, mostly I just read this one because I don't have much to contributed. But I do have a question. I have scattered bone mets all over, C spine. T spine, pelvis, femur. ribs. I had not had any pain that I could actually attribute to the mets for the past year. I had a lot of pain issues with Femara (with Afinitor), but was able to push through that with exercise until it quit working. Next we tried Xeloda, which failed. Then I started Gemzar last week, and have had really bad pain, especially worse in the morning that involves my entire chest and ribs, but not much else. Is this maybe from the chemo working and I am having a "tumor flare" or something? If so, does it eventually improve?
I swear I had about 2 weeks between stopping the Xeloda and starting the Gemzar in which I actually felt almost myself, but since the Gemzar (which I also got with Xgeva) I have been miserable with this pain. A little fatigue, some nausea, but the pain is the worst I have experienced yet. I do find that if I can make myself get out of bed and move a little, that helps, and then a long hot shower helps some more, and by then the pain pills kick in and I do better during the day. Maybe I have answered my own questions, but I just needed to vent a little here - will definitely check with the MO. Thanks for listening.
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This could very well be a tumor flare and if it is, the pain should get better as the tumor unflares/dies. Hope the Gemzar decimates all the buggers, LInda!
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Hi everyone, I was woundering how many of you been in stage iv with bone mets? I was dx back in may of 2012. So coming up on my 2 year mark and feeling pretty good.
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smtray,
Read back through this thread and you can see there are many of us. It's been 2 1/2 years for me.
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3 1/2 years for me (4 years in the spring).
Leah
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Smtray,
I'm almost 5 years out with bone mets from the start in 6/09. I had 1 new bone met after 4 years & stable again on new med.
Terri
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Smtray: DX in late June 2013 with mets to skull, spine, ribs, pelvis, tailbone, sternum, upper left arm after going about 10 years cancer free from IIIa. At initial DX, I had a few positive lymph nodes in my chest (now resolved) and a lot of pleural effusion on my right lung (pretty much gone since thoracentisis the end of June). I think the mets may have occurred in 2012 but I'll never really know, since I stupidly never told my onc about all the pain I was having. At 55, I thought it was arthritis, getting, older, etc. Plus in 2011, I was DX with an autoimmune disease that causes pain. It's in remission now, but I learned that with my particular autoimmune disease, my rheumatologist should have suspected a cancer recurrence but never mentioned it! Not that it would have prevented this, but maybe we could have caught it before it went all over my torso. I've been on Arimidex since my DX, and Xgeva shots since October 2013. Just had my 3rd PET scan this past Friday (Feb 21) and another tumor markers. I'm feeling okay, I still work full time and am trying to start biking again.
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Great post, WanderingSpirit! I'm seeing the onc tomorrow; have a new odd pain and afraid it may be that my Femera has stopped working. I'm hoping it's not, but am feeling a bit fragile tonight. Fingers crossed that it's not more mets!
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Kiwicatmom Praying for you today.
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Thanks Mrs RockyTop! Much appreciated!
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Olay here I go. I've read a lot on these forums since 2011 when I found out I had Breast cancer went through chemo, double mastectomy and radiation. Thought al was good. Mind you I still have two children at home ages 12 girl and 10 boy Was having pain in upper arm (shoulder area). Was doing therapy and was just getting worse. Went to urgent care they set up MRI and orthopedic apt. Got to orth apt and was asked to confirm who my oncologist was and shows me the MRI. I hand a tumor on the bone and had fractured it. Sent me to orthopedic oncogy. Has surgery on the 12 th of this month along with bone scan and ct scan day before. After surgery and biopsy found out my breast cancer went to bones beside my arm there were 2 spots in pelvic area and back shoulder area Was doing ok just felt numb. But now I feel I'm falling apart. My kids do t deserve this. I'm trying to keep strong for them and hubby bit don't know if I can. Now I feel I'm falling apart little by little. I a fighter but I also tend to keep things inside so no one can see the reale. Scared as Hell I know this is long but I'm not sure what to do now This is the first time I've written anything on this forum or any other. Any words of help are greatly appreciated . Sometimes I feel like I by myself even though I know I'm not. Doesn't that sound silliy. Have to go kids will be home soon
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Justdz you have been through a lot.Maybe you can find some time alone to have a good pity party and cry it out. For me an occasional pity party lets me release a lot of tension. Or whatever works for you to release the pressure you feel. Sorry that you are in the new normal world, . You are not alone in this.
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JustDz,
What was your original dx and treatment?
I read a lot too and there are quite a few ladies doing well managing the bone mets. Hoping you will be the same
Hugd
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(((((Hugs justdz)))))). No one deserves the crap disease. This is a scary time for you and your family. Feeling all alone with family around is the same way I feel. Moms make things ok not get sick just breathe , talk to your onc and get plans underway. That will make a world of difference
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Hi Justdz.....so sorry you have found the need to be here but glad you have found this forum. Dealing with mets is a very scary thing and everyone goes through what you are feeling.......the sad thing is that nobody deserves to have to deal with this.
Feeling strong for everyone else is not the best thing, right now you need to be strong for yourself and no one else.........I know it sounds selfish but it's not. You have a lot to get your head around at the moment so a little you time is very important.
These boards are a great place to share your frustrations, fears, cry, rant and rave.........we have all been there and really understand.
Bone mets are scary just as mets anywhere else are but they are probably the easiest to live with and believe me you can live a long time with them............for your encouragement I am two months shy of five years and doing well. Wishing for you that you can say the same in the future.
Love n hugs. Chrissy
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JustDz, I'm also quite new to this bone mets thing, but just wanted to tell you I'm so sorry you're going through this, and I'm glad you've posted. The only other idea I wanted to offer is that most larger treatment centers have psychologists or oncology social workers (title depends on the facility) on staff and available to talk, usually included as part of our treatment. Do you know if someone like that is available where you're being treated? If they are, maybe talking to them would be helpful. I did that a couple times when I first went through tx, and each time I felt like they gave me a lot of clarity and practical coping skills to deal my fears and to help me move forward. Just a thought... (((Hugs))) Deanna
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JustDz, I agree with Deanna, please try and see if you can get some form of counselling. I went through counselling last summer after I was diagnosed with bone mets, and it really helped me. Before then I felt that my death had begun the day I was told I had the mets. My counsellor helped me to realise the corny saying "you live until you die" is true, and I don't feel any longer that I am in one everlasting death scene. Also, please don't exhaust yourself trying to be strong - you already have a cancer burden which would terrify a lot of healthy people, if you try too hard it may send you over the edge and that would not help the children in any way whatsoever.
Please think of what Chrissyb said also, she has had mets for nearly 5 years and is doing well. Please don't let this disease get you down, you have plenty of living to do just yet.
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Is it true if bone mets stay in bone, you have a good prognosis?
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As to "bone mets only equals good prognosis": On the whole, when the patient presents with bone mets only, it means that the patient might get more time out of the whole treatment course. Some bone mets stay chronic for a long time. And, as long as the cancer volume isn't huge, therefore impairing marrow function, the bone mets aren't life threatening, but can have implications for mobility and pain management.
Sadly, what seems to affect long term prognosis is the grade of the cancer. When I was first diagnosed, my MO said that Grade 1 and 2 almost never progressed to metastasis, but I have seen a few ladies on the list with grade 1/2. They must have been so shocked when they were dxed with Stage 4.
Remember, all this is just my opinion, and not fact.
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FridayGirl, love your post and your advice.
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Barb312 I was stage II and progressed and my doc kept saying that it shouldn't have happened, I was defying statistics. I did tell him I was not a statistic but an individual and with this disease, anything is possible.
There was a lady who used to post once a year on her cancerversary, she had bone mets. She left this world after nineteen years...........there are many women on these threads who are ten, twelve and more years out so there is always hope.
Love n hugs. Chrissy
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Chrissyb - I hear you. I was stage I and six months after chemo I was dx with bone mets. My doctor calls me a phenomenon. As a single mom with 2 boys (11 and 8), I will fight with all I have so I can be like one of those ladies making it 10+ years.I don't get on here often but reading this board reminds me that I'm not alone (sadly). I thank you all for sharing.
A little FYI on pain management... I take Excedrin Migraine most times. Something about the acetaminophen, aspirin, and caffeine combo. Works for me... hope it helps.
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JustDX - so sorry you're one of us, but glad you found us. What the others said is so true. I'm at my one year anniversary and still working full time and pretty much carrying on as normal. I got counselling and it helped. When my mom had cancer, she saw a counsellor in the hospital (in the US) which was part of the oncology program. The counsellor talked to my stepdad and me as well, and it helped me a lot to deal with her diagnosis.
Chrissy - If I hit lotto this weekend, I'll fly over on your 5 year anniversary and buy you champagne. Or..fly you over here!
Only lack of funds is stopping me!Terre
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