Bone Mets Thread
Comments
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@NickyJ, there was a thread on bco about a method of radiofrequency ablation for treatment of bone mets pain that has recently been approved by the FDA here in the States. I don't know whether it's available in France, but it might be worth asking about, and also inquiring whether it can be done where radiation has already been used.
FDA Approves New...Therapy to Treat Pain from Bone Metastases
I hope you are able to find a treatment plan that provides some relief.
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Romansma, glad it's getting better!
Nicky - as they say here in NZ...Bugger!!
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thanks for the support ladies, I'm just waiting for that phone call now, I'll be back later to let you all know what's decided.
Curveball, thanks for that, I'm going to check it up right now to see if its available here; that way I can ask about it when I get the phone call.
Hope everyone has a good day!
Nicky
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Hi, I was wondering if anyone else with bone mets had trouble laying in bed. Recently I have been sleeping a lot more so maybe I'm just sore from that? But when I go to bed my hips and ribs begin to really hurt. Rolling over is not easy and really hurts too. Pain meds help some I was scared that the c was progressing or something like that.
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Hi fluff. I have bone. Mets too and they bother me more at night for some reason. I'm sure someone with more experience will offer further help. I hope you are pain free soon
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Yes, I have an uncomfortable time in bed too. I have hip and pelvic that cause me pain as well as spine mets that have caused pain in my shoulder and arms. Really tough to turn over and a need to tuen often from the hip. Pain meds are helping, but not always.
Second week of radiation. Getting soooooo fatigued!
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Bone scan tomorrow. I have had 18 Taxol and pain has been totally gone for weeks now. Praying for regression, maybe even walking with NED?????? Should have results Wednesday. Blessings all, Kathy
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Please forgive me if I should not be posting here, may be the moderators could guide me as to where to post.
>Ladies, im sorry if I posted this before, but I'm having back pain and it has me very scared. MO thinks it is damage to muscle, tissue and fascis from rads. But it is not getting better, but it is also not getting worse. Finished rads 10/4/13. The only time the pain is worse is if I stand and try to do.things like wash dishes.Anyone have any ideas.
Blood work was all good last week.
Thanks
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Nettie I am in agreement with your doc about your pain being tissue related due to rads. Pain from mets is not worse at times but is more a constant and in particular at night.
The tissue damage will get better but it will take a long time unfortunately, in the mean time ask your doc for some pain meds to help get you through. You nay even find that some PT may also help. Good luck!
Fluffernutter bone mets pain is more pronounced at night and is usually one of the symptoms that the docs look for to confirm a mets dx. If you are getting too uncomfortable you may need to get some better pain meds.
Love n hugs all! Chrissy
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It does seem that the pain in my hip is stronger at night, and does interfere with a full nights sleep. My usual routine is a cup of chamomile tea and a pain pill. Then around 3 or 4 am I am awakened by the pain or the night sweats. Appointment tomorrow for blood work before my falsodex and xgeva shots, also to discuss treatment plan to deal with a nasty little lung node. Fortunately DH and daughter will go with me to help me remember what the doctor tells me.
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Thanks chrissb. It's just so hard to wrap my head around.
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Nettie as with all these treatments for BC, they not only kill off the cancer but they can and do also kill of the good cells and damage others. Some will repair themselves over time while others will not.......I also have rads cell damage but it has resolved itself to the point where it no longer causes me loads of pain but I am aware of it non the less. Time is what has dealt with it and I hope time will deal with yours.
Love n hugs. Chrissy
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Chrissyb, thank you for your reply! You are so kind!
This morning, I had no pain until sitting at my desk stuffing envelopes! From experience, does this sound like cancer? I know no one here is a doctor, and I am talking with my MO about all of this, I would just like to hear from others and there experience!
Thanks!
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nettie,
First and foremost, I hope you don't have to join us on this bone mets thread! Chrissy started another (she is a true gem!) for those who have questions about possible mets
http://community.breastcancer.org/forum/8/topic/78...
You might want to check it out. Take good care of yourself.
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Hi fluff, I also find both lying flat or on my side in bed gets painful and wakes me up despite sleeping pill. I find sitting or standing uncomfortable after a while too. I bought a miracle foam mattress topper and that has helped make the bed a little more comfortable. At the moment I'm taking 150mg lyrica twice a day and have a 75mg fentanyl patch. I take 25mg of oxycontin as needed for breakthrough pain. I asked to up my pain meds recently and the doc asked me if it's bone pain or nerve pain. Tbh I don't know what the difference is, just that I'm in pain. They want to increase the fentanyl patch and if that doesn't work to then increase the lyrica. It's my choice but I'm worried about increasing the dosage if it's not the right painkiller and then building up a tolerance. I hope you get sorted soon as it's so debilitating
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Hello fellow bone met'ers
I have a question. Last year I had a hip replacement to remove 5cm tumour on my hip. A week ago I found out I have to have a knee replacement as there is a 8 cm tumour on my knee. So it seems we not been able to control the cancer spreading. I have just been to see my oncologist and she tells me that the next step for me will be chemotherapy. I don't understand, I had Tamoxifen, letrozole and then this last year since the hip replacement I have been on exemestane. Can that be the last in the line of hormone treatment?
I am not so worried about the knee replacement as I have an excellent surgeon. But I do have some scans next week to see if the cancer has spread elsewhere. It is going to be a long week until I get the results.
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New to this thread and fairly new to the boards. I was stage IIIA in
2002 and went into full remission right after that. They were even about
to say "cured". I had a lumpectomy of my right breast only (3 cm tumor)
and it was positive in 4 of the 26 lymph nodes removed. After the
lumpectomy I did 8 rounds of chemo and 33 rads and 5 years from 03-08 on
Arimidex. It was smooth sailing until last June. Then out of the blue I
got DXed with Stage IV. It was a fluke how they found it, I thought my
"pneumonia" was back but instead it was pleural effusion, right lung.
After Pet scans and tumor markers I got a shock. At that time they drew
the effusion off (July) and it's still gone except a tiny bit. But I had
a few positive lymph nodes in my chest. The shock was bone mets: Skull,
sternum, ribs, spine, pelvis, tail bone, upper left arm. Organs are all
clear. Tumor markers were astronomical at 898 in early July.
I was
put right back on Arimidex in late June, and Xgeva shots in October. So
far the markers have dropped when tested every two months, but last
check in Dec they were still at 136 point something. The PET Scan in
October showed "significant regression". The lymph nodes were fine.
Still slighttttt pleural effusion, nothing to worry about. So Friday I
go back for my 3rd PET scan and my every other month tumor marker test.
I
am petrified. I want to be NED so badly but I don't know any other
woman just like me with this many bone mets. As my onc said "too many to
count". He wants to ride Arimidex as long as possible and then "when"
it fails, switch to something else. Chemo is last resort this time. I
trust him.
Is there ANYONE like me with extensive bone mets? How long
have they been around now? This is still new to me and my onc will not
give me a time frame or as someone says, an "expiration date". I asked
if he had patients like me alive after 5 years he said yes, I said 10,
he said some. But he has only been at that practice for 11 years so he
has no others longer living. I did call the office one night last year
and another dr said he just lost a patient who lived 17 years with mets,
didn't say where.
HELP. I need friends on here, I need
encouragement, I need to know what to expect. Please write!! I will be
55 soon and a mother of 3, grandmother of soon to be 3, and fairly new
wife to my 2nd husband since 2011. THANK YOU ALL!!!0 -
Tigre there are a couple more available to you, Toremifene (Fareston), Fulvestant (Faslodex) and Anstrozole (Arimidex) but it sounds like your onc wants to use a heavy hitter to try and slow the cancer again before putting you back on one of these. This way of treatment is quite commonly used.
Good luck with your knee replacement.........I had one done almost two years ago and it's a tough one to get through.
Wanderingspirit there was a sister who posted here until last year and she was 19 years with mets before she passed so it's not impossible to have a lot of years ahead of you even with 'extensive' mets. Arimidex is just a little pill but boy does it pack a huge punch! Long may it keep cancer on the run for you!
Love n hugs to both of you. Chrissy
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Thanks again! Hey how do I start a new topic? I want to make one for people "like me" with extensive bone mets who are on Arimidex? I don't see how. Thanks
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Wanderingspirit, go to the menu and click on All Topics, scroll down till you find the stage IV forum and click on it. At the top of the page you will see 'start a new topic'. Just click on the this and you are good to go.
Love n hugs. Chrissy
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Thank you! I just did it! Love and hugs right back!
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thank you chrissy, that makes a lot of sense. can you tell me how long was it after the knee replacement before you could drive?
hugs to you. XX
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Tigre if you have an automatic car and the knee that is replaced is not your driving knee, both accelerator and brake then as soon as you feel strong enough to be able to get into and out of the car. If your car is a manual then you need to be able to compress both the clutch and the brake and lift your leg to do this action without too much pain and with a fairly free motion and this can take up to about three months.
Each of us is different and if you religiously do the exercises that are given by the PT then it could be a little quicker. I have been told that compared to knee replacement a hip replacement is a walk in the park........I haven't had a hip replacement but going by those who did at the same time I had my knee done I think they could be right as those guys and gals were almost running when I was in agony just getting on my feet.......lol.
I wish you a speedy recovery.
Love n hugs. Chrissy
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This was supposed to be my 9th dose of abraxane, but instead we switched to taxol. I have had to miss doses due to low blood counts on abraxane, so this seemed best. And if neuropathy reers it,s ugly head, we can go back to abraxane. Chemo to continue as long as it works. Dear God, thank you for the good days .
Anita
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Crissy, I have had a hip replacement and I was thinking that this would be easier - but you are right. I just did research over the net and yes a knee replacement is harder. Ah well. At least the pain of the tumour will go away
love & XXX
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Tigre while I was healing from mine I would often think why did I do it but now I think why didn't I do it sooner.......lol. Yes, that tumor pain will be gone and it will take a good twelve months before your new knee will feel like it belongs to you but when that happens it's truly a great feeling.
Anita I sure hope the hand/foot syndrome stays away long enough to get a few good doses under your belt so your blood counts can once again get back to a decent level.
Love n hugs. Chrissy
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Well, I picked up the results of my bone scan. Not what I had hoped. It shows a couple areas of improvements, several areas with no change, but also some new areas? I have had 18 Taxol, and also on Herceptin and Zometa. Can anyone tell me if this is normal for this stage of the game? I will take the results with me Monday to chemo and see what the doctors say. I am trying not to read too much in to this but it is discouraging. I have been pain free now for probably 2 months, so that is a good thing. I don't know what I would do without everyone here. No one knows what we are going through unless they have been there. Blessings all
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Mrsrockytops ... can't really say if this is "normal" but it seems to be a rollar coaster ride for the majority of us Stage IV. Being pain free is always a good thing.
I had a bone scan (first one since 2012) and CT chest/pelvis (second CT since beginning taxol) this week. The bone scan showed progression, which was not a surprise, because I had had 18 months before the start of taxol with no response to tx. However, the CT scan showed liver mets continuing to get smaller, no new areas anywhere. They then compared the prior CT bone mets to this CT and it was determined to be "stable." So, all and all I'm satisfied the taxol continues to do its work. I was offered a schedule of two weeks on, two weeks off, but decided to stay the course. I want those liver buggers snuffed out before I change anything.
Now, new question. I have a new side effect and it's believed to be from the taxol, but I'm thinking it may have been a reaction to the bone scan, although the doc says not. I have bilateral edema (swelling) of the calves and ankles. It came on within hours following my bone scan and continued the next day. Today is day 3 and so far it looks much better, seems to be going away by itself. I was given a diuretic and plan to take it if it doesn't go away by tomorrow. I have never, ever had any kind of swelling anywhere, so this freaked me out. Has anyone here had this experience either with taxol or following a bone scan?
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mrsrockytops,
We are each unique as is the progression of our disease. Now, if you started growing a second head, that would not be normal
Caryn
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Exbrnxgrl, Love it! Thank you for making me smile.
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