Bone Mets Thread
Comments
-
Galsal,
I had something similar. I took a very bad fall in the shower. They took a CT to rule out punctures and broken ribs. Then I got the "good news bad news" talk...nothing broken but there's a suspicious lesion on L4...go see your oncology people.
The oncologist made me have 2 more CTs 3 months apart before he ordered the PET scan and then bone biopsy. Those 6 mos were some of the worst in my life. Waiting and watching the lesion grow and doing nothing about it...HORRIBLE.
Hard for me to believe this is standard of care but here we are.
I am glad for you they are moving to the PET scan right away.
Once you know what you are dealing with, the better you can deal with it. My best wishes go with you during this crazy waiting time.
Warmly, V
0 -
Gracie -tks. Back at ya!
>Z<
0 -
Thanks Gracie! Z I’m hoping you get relief and fast!
Babs
0 -
Thank you all for your kind words. I’ll try the rubs, Lita. Good idea since I try to limit Advil etc.
Iwrite your comment about a broken nail made me smile. What I didn’t mention...All my nails broke and cuticles are a mess despite greasing myself up, white gloves at night ...also hair falling out in handfuls. So I guess I wasn’t whining because that I can handle...tykerb saving me money on manicures.
Laurie ..doing this together ...what a lovely thought.
Sunset I’m sure someone will have input on your question.
Bless you all ...Maire.0 -
Sunset,
I have bone mets and I sometimes have a lot of pain in my muscles and joints. I have been advised that if it's bone pain it doesn't go away. I have intermittent periods of pain mostly because I push myself physically - probably shouldn't but that's just how I roll. When I do a lot of heavy lifting and gardening - carrying stuff to plant, shovels and a lot of bending to pull weeds - that sort of thing - then I pay for it for several days. Then, it goes away.
However there are also certain pain areas that simply never go away because - at least in my case - I have had low back issues and sciatica for a long time. Oh and arthritis in certain areas. Those simply do not go away. So a lot of your pain can be from things that you had going on for years before bc.
Doesn't take away the paranoia that I get thinking that every freaking pain is mbc.
I also read on these posts that the test is to take a pain pill like Ibuprofen or Aspirin or Aleve and it goes away then it's most likely muscle and tendons etc. and not bone.
Chats
0 -
Ibuprofen is the test for muscle vs bone pain according to my MO, not aspirin, Tylenol, Aleve or any other over-the-counter pain reliever. Since I'm already on pain meds, when I have breakthrough pain in my back that is concerning I'm to take one ibuprofen and if I get some relief it is most likely muscle pain that we won't worry about immediately. If there's no relief we start worrying and escalating things. Since I had been inactive for 6 months and I know some of my "backaches" are just from being back on my feet and active again, this simple test helps give me some peace of mind.
I think it's because ibuprofen is best at reducing inflammation? Not sure, but he was very specific that it has to be ibuprofen and not anything else.
0 -
Hello bone mets ladies; I found out about my extensive bone mets about a month ago. All over my spine, shoulders, hip, legs, sternum, clavicles and I think now my neck. there is a lot of tightness and some cracking as i move my neck. got the xgeva shot last week. will start ibrance/faslodex. have pinched nerve in right hip and can't walk or standing for long. just make it across the room and then got to sit.
does anyone do the faslodex injection yourself?
can you start ibrance alone?
Marie67, i was reading your post and was relating to your pains and sense of hopelessness. my nurse told me I was unique when I explained my symptoms to her. not used to not moving around as I took care of my family and house chores just few weeks ago.
nurse also told me they would not do surgery on me to remove compressed nerve as i have active disease. so today i am sitting on couch. i sleep on couch too.
just to say, me too.
0 -
hello,
anyone seen this article?
https://www.medicalnewstoday.com/articles/320372.p...
I believe they will do clinical trial this or next year.
h
0 -
Hope. Interesting article! Sending kind wishes for good treatments and less pain! The Xgeva has helped me and so has the Ibrance.
0 -
Hope991- I don't think anyone would ever want to give themselves Falsodex injections. It is given in the upper regions of the buttocks, and there are two injections of a fair amount of viscous liquid. You need a nurse who is very practiced with this. I found the injections very do-able.
It is my understanding that the best results are achieved by combining Ibrance with hormonal agents.
Best, MJH
0 -
Maire...as the others said, you're not whining. Definitely not. And anyway, if any of us feel like having a whine, this is the place to do it - amongst friends who understand that sometimes it just gets on top of us and we need somewhere to say it. Somewhere where we won't be told that "there are others worse off", or the ubiquitous "I know just how you feel. I get back/leg/hip/whatever pain too". Go for it, anyone who feels the need to vent! We have the right sometimes.
Sunset...I have heaps of bone mets in my back - ribs and spine - and I had horrific pain from them until pain killers began to kick in. I do get muscle spasms, yes. I haven't noticed anyone else saying they have but I think it's to be expected. My take on it, in my case anyway, is that the muscle spasms happen because for a long time I had to remain immobile due to stress fractures at the tumour sites and the muscle spasms began when I started to become mobile again. I think the muscle spasms are for two reasons - one, to protect the sites of the tumour pain and two, because I'm beginning to use those muscles again. Muscles are attached to bones so it stands to reason that we should get muscle pain if our bones are damaged. I'm happy to be corrected if anyone has a better way of explaining but this is what my doctor husband has told me. His explanation was more coherent though! This is the best I can manage today. I hope it helps.
0 -
thank you Chats, Lori and Leapfrog. You are all probably right. Some of it is age and movement related, but it seems unlikely it’s not related to the mets in some way.
Hope, I agree with MJH. You will not find anyone who gives themselves Faslodex injections. Truly don’t think it’s even possible. Faslodex with Ibrance and Xgeva is a good combo for bone mets.
Sunset
0 -
Thanks for the good words. I'm just not feeling very positive about any of this.
0 -
Hello friends. Wanted to throw out a suggestion for muscle aches that someone posted before. Heat up a fabric bag or sock filled with seed corn or rice in the microwave for 3 minutes. When it is hot I put it behind my back or on my hip and the warmth really helps relieve muscle cramps and pain for me. It stays warm for quite a while. I made some a few years back and have used them a lot since Dx...especially during initial treatment and now whenever I overdo it.
0 -
Good morning ladies! At least it's morning where I am. My rads doc tricked me
Thought today was my last treatment but it is only my last treatment for my spine, have 5 more on my head. *sigh* Oh well. Today marks two days where I can say my pain is better, up until now I've had a good day and then a bad day, I'm trying not to get too excited that maybe I have turned a corner pain wise. I'm so ready to be rid of this walker and start being more independant.Thursday I see my onc and find out about the PET scan, biopsy results and treatment options from here. Friday I have 3 MRI's, that'll be fun.
I've almost caught up on this whole thread! I can't believe it!
0 -
bigpeaches, yay for less/manageable pain and good luck with all your appointments. As someone with a similar subtype and mets locations, I am interested in your docs recommendations and absolutely believe we have options ahead.
0 -
Bigpeaches- so glad the pain is improving. Hang inthere with the rads...
0 -
Hi All- I have been on Ibrance/Faslodex/Xgeva for 33 months now with little to no SE. (Have been stable w/bone mets this entire time). Within the past week, I have noticed that my jaw is very sore and tender...I know it's not a tooth since there is not one in that area. Is this cause for concern? I haven't been dx with any mets to skull in the past...MO appt tomorrow; just wondering if I should even mention this? Next scan is in June.
Thanks for your input and have a great day!
MM
0 -
MM,
Yes mention it.
I have an issue with my lower jaw so have been researching it. Also I am a periodontist so I have a strong interest in oral manifestations of cancer.
It is very rare for cancer to metastasize to the jaw. But when it does, the number one source is breast cancer. I have been struggling with my MO over this lesion in my jaw. He does not believe it is anything but I know it is getting bigger all the time. Because it js so rare an occurrence, he refuses to even deal with it all. It did nkt light uo on my PET-CT therefore, it is not his problem...
Most of us here know that imaging is great at picking up lesions of a certain size and bigger. Then we hem and haw and wait around for things to get bigger?????????? I am sure that is what my deal is. I strongly suggest you bring it up at your appt so you have them involved in assessing the situation.
Warmly, V
0 -
MasonMawMaw and Gumdoctor,
There have been a few ladies here who had mets to the jaw. I think Lalady is one. Perhaps she'll chime in. In addition to possible mets to the jaw it could also be ONJ, osteonecrosis of the jaw. This condition is also rare but it is a potential side effect of bone strengthening drugs (bisphosphonates) like Zometa and Xgeva.
MM definitely mention this to your MO.
Don't get crazy with Dr. google on this. Just make sure to mention the issue with your MO.
Keep us posted.
0 -
Hello all,
This is my first time posting on this thread. Seems like a wonderful, supportive group....and while treatments may come and go my bone mets are here to stay...which really aggravates me.
I'm having a minor (ha!) meltdown tonight. In the past 2 months my tumor markers have gone WAY up...to the tune of 350 points. It's been almost a year since my diagnosis and they have consistently gone down but now I'm headed back to where I started. I have a PET/CT next week so that will reveal all...but dang it!!! I so wanted to be one of the "lucky" ones that got years from one treatment.
I was feeling pretty good about things...just had rads to my hip which helped so much. I'm back to walking my dog every day and I haven't done that since diagnosis! I had an EGD yesterday and had my esophagus dilated and I can actually swallow a little real food after months of living off Ensure. I have to have it done again but it was confirmed the obstruction was from radiation damage, not cancer. Yay! Also have cataract surgery scheduled and can't wait. That was to be done last year...but the whole mets thing.
UGH....I know I'm getting ahead of the game, but how can you not? I finally feel pretty "normal" and just wanted that to last awhile. A new treatment and side effects were not in my plan. Laughable, isn't it?
Thanks for listening and being there for me even if you don't know it. I read these threads every day and gain so much knowledge and hope. And I think of you all all the time.
E
0 -
Thank you Leapfrog for the kind words. I am laughing at myself now. I had my scan. Getting results on Friday as well as infusion. Tuesday I was feeling good. My reg doc gave me the all clear o the bronchitis I had last week.
I went to my group and felt very calm. I was going to hit the garden on Wed. Then at 9 pm I felt like a truck hit me..fever,aches. I was thinking UTI..oh no I am the last person in the US to get type A flu. I’m on Tamiflu. Cancelled infusion until next week. My DH always says if you want to make God laugh tell him your plans. I spent the whole day in bed. I never did that on my worst days of AC and Taxol. He actually brought me toast but won’t take Tamiflu. So much for my flu shot..maybe I don’t have to get one next fall. All is well they didn’t have Tamiflu the last time had it was 25 years ago. I hope I didn’t share with my group.such an inspiring group and we do laugh. They are fabulous women like all of you.
Take care all. Hugs
Maire
0 -
ElleonWheels- Welcome!! It's not clear from your treatments which were before metastasis and which after,but I guess you are on Ibrance-Faslodex? Try not to jump ahead of the facts too much, especially just from tumor markers- and if its time for a change, you do want to know that! And if so, don't assume the next treatment won't be better..
to all, I am checking the data out of AACR daily, nothing much so far on MBC- Abemaciclib did a TV ad with three women, supposedly one of them is an actual MBC patient, they aren't telling which one, so that's interesting but not what we are looking for! No update on the Abemaciclib-Keytruda combo trial (JPCE) which I am also checking for daily-
Hope everyone is hanging in there OK tonight..
0 -
Thanks, Cure-ious. You are correct on all counts...I needed that reminder!
I am on Ibrance/Faslodex. My eighth round. I started with Taxol, second round I had a scary allergic reaction. Then Xeloda for a few months but I couldn't keep any food down...so on to I/F. Really it will be the first treatment that fails if that is indeed the case. So onward I will go.
0 -
Elleonwheels, my MO doesn't test for tm's, and mine aren't reliable anyway, so can't speak from experience. But, have read many posts here from women whose tm's have gone up when there's healing or resolutions. Good luck with your scans and keep us posted.
Maire, yes, I think you are literally the last flu patient of the season. Glad you're feeling better, but don't take any chances, get your flu shot next year!
MM, sending you positive energy as you bring your concern to your MO. But also in awe of your 33 month and counting run on treatment.
0 -
Elle, don’t worry too much about TMs. With your radiation treatments and inflammation, that alone can send those numbers up
0 -
I saw my onc yesterday and got the results of my bone scan. I still only have one met ~ in my 2nd right rib. So no progression - yay! But she did say the cancer had 'flared' which I assume means it is active.
She said this was a positive for an onc to see as it shows the rads and tamoxifen are keeping it at bay. My calcium is low so I have to take another one of those horse tablets each day lol.
But all in all better than I expected. I go for another bone and a CT scan in July.
0 -
MM, when I got my first shot of Xgeva, I had to sign a paper that said I understood the various potential side effects and necrosis of the jaw was one of them. I would definitly mention it.
0 -
Big Peaches Im glad to hear your pain level seems to be getting better! Ill be keeping you in my prayers.
0 -
All,
I mentioned getting a flu shot to my onc, and she said no. Too risky with all of the chemo, hormonal meds. I’ve been on. I was very surprised. Just thought I’d relay, as I know doctors like to push the flu shot every season.
Elle, welcome, and I hope you’ll find that this group is so good at posting things to help, and certainly issues that aren’t always covered with your onc. I am very grateful for all of the things we cover in this thread
Laurie
0
