New here but have a question

[valentinecalico]

Hi all....I was diagnosed with lobular breast cancer in 2006, and with ILC bone Mets in 2020. Been doing well on ibrance, letrozole and xgeva and my 3 month scans are in 1 week. Yesterday on 2 occasions my left leg had an acute pain episode, like it was being stabbed ( not that I know what that is like tbh)....it was short lived and went away. Today I'm feeling twinge. Wondering if I should call my clinic or just wait since scans are in a few days. Thanks! Peggy

[valentinecalico]

also welcome any feedback on the particular symptoms - twinges and occasional short-lived, stabbing pain. I've been hiking, walking, kayaking with no problems but yesterday the pain happened a couple of times, and today it's been 3 or 4 times. Anyone else experience this with bone mets?

[Worriednow in reply to valentinecalico]

I have been daignosed with lobular with bone mets. Had 17 rounds of praxcimetal and will be on tamoxifen. Just worried about recurrence as we all do. Understand it’s slow growing but feel sad

[valentinecalico in reply to Worriednow]

I am so sorry to hear of your diagnosis. I think it is quite natural to feel sad. I still feel sad sometimes but I try to keep busy if it gets too much.........and sometimes I just allow myself to feel that way. It is certainly a valid feeling under our circumstances. I am tolerating my Ibrance and letrozole pretty well, and I didn't find tamoxifen too bad either when I was on it years ago. Good luck to you and a big virtual hug. <3

[DDIL1 in reply to Worriednow]

What is praxcimetal? I am Lobular with bone Mets ER/PR+ HER- going on 3 months. Learning lots here. I hope you will be ok. I hear a lot of positive things about people with bone Mets do extremely well. I just connected with LynnFish who has been MBC 18 yrs with bone Mets and is doing well. There lots of hope.

[Worriednow in reply to DDIL1]

Thank you my lovely I feel so positive .

[Worriednow in reply to DDIL1]

It’s taxol chemo

[valentinecalico in reply to DDIL1]

Hi DDIL1 - not sure if you meant to send your post just to my post answering the one from worriednow? My post is from 6 months ago and I'm worried that no one else responded to your questions because maybe they didn't see it? Would you mind copying and pasting it as a new thread with a new title? That way you would hear from more people?

[DDIL1 in reply to valentinecalico]

Thank you. I see now it is an old thread.

[valentinecalico in reply to DDIL1]

Not that I mind talking with you, but by being in this old thread you are missing a lot of people. 🙂

[Iwasborntodothis]

I have transient pain from bone mets-my bone mets are everywhere- spine ribs shoulder hip femur - hip is the worst and I had radiation there. I rarely have anything I would call stabbing- I am fairly active I hike and golf and do some yoga - I guess I just prep with some Aleve when I am going to be active and use a heating pad when I overdo it. This probably doesn’t help… my scan showed the bad hip mets and my doc was annoyed I hadn’t brought up pain I just thought I had arthritis. So, maybe your scan will show something that might need a radiation “zap” - sorry I’m all over the map but tell your doc about pain

[Bettybuckets in reply to Iwasborntodothis]

That was helpful!

[Hidden]

Hi there and welcome. I had my initial Bain 2007 and mets in 2019, so very similar to you. I would say that if you are worried then mention it, but I think they would just do the scans anyway. As you are so active it might just be a soft tissue or nerve pain. Leg pains can be related to back or hip. Whereabouts in your leg is the pain? Does it come on after being in a certain position or doing something specific? If you can relate it to something it is more likely to be a musculoskeletal thing. If not it may be more related to the cancer.Good luck with scan results and try not to worry

Clare

[valentinecalico in reply to Hidden]

thanks Clare. It is in the femur area and yes, it comes on when I walk around or try to hike....not there when I am sitting or lying down. I will get it seen to next week with the scans hopefully. Thanks for the reply

[Hidden in reply to valentinecalico]

Do you hike using walking poles? I have just started using them and find I can go further and don’t get as tired. They will probably work to take the load off the femoral met.Clare

[valentinecalico in reply to Hidden]

Actually I do have hiking poles but haven't been using them. That's a great idea - I will have to get them out. Thanks for that suggestion. I find that getting angry and cursing at the pain when it happens doesn't work - but it makes me feel better lol.

[Hidden in reply to valentinecalico]

I am a great curser and agree with you, it never helps the pain but boy does it feel good.I got some very lightweight poles as I found the heavier ones not easy to use.

[AvidBooklover]

Could be nerve related. I would do the scan first. I am dealing with what appears to be sciatica going all the way into my ankle and foot. Been driving me nuts since May. 2 epidurals and getting a nerve test on Fri. Your situation is nowhere near this, but wanted to give you a heads up on nerves!

[valentinecalico in reply to AvidBooklover]

Thanks you - I am an avid booklover too lol. I'll get the scan next week and go from there. If I'm sitting or lying down it doesn't happen so I can mostly avoid it. I hope you get some answers on Friday!!

[mariootsi]

Good luck with your scan!

[valentinecalico in reply to mariootsi]

thank you! The usual scanxiety will kick in on the weekend I am sure.

[mariootsi in reply to valentinecalico]

I know!

[Missmaddie615]

Welcome to this group of wonderful, lovely ladies! I don’t have any experience with what you were going through , but just wanted to offer my support. Wishing you much success on your current treatment and hoping for great results on your scans!

[Hazelgreen]

I have extensive bone mets, and, about once or twice a day experience the sort of burning, stabbing pain you mentioned. It is always short-lived. My understanding is that it is related to nerve damage that occurred before my bone mets were treated. That helps me not worry about it, and maybe will help you too.

Best Wishes,

Cindy

[valentinecalico in reply to Hazelgreen]

thank you Cindy. Fingers crossed I will find out next week what it is. Are you able to just ignore it, or just take a pause while it happens, or are you on painkillers??

[Hazelgreen in reply to valentinecalico]

Hi Peggy,It really is short-lived, and, usually doesn't interrupt whatever I'm doing. I think it is more frequent when I'm on my feet for longer than usual. Sometimes, a knee will "go out" and pain then. That lasts a little longer. I don't get as much exercise as I should.

I haven't been taking pain-killers except a very occasional asperin for headaches. I'm assuming that I'll need stronger meds when the cancer is more developed but maybe not. I'm 75 years old, and there was a 13 year gap between my two diagnoses so I'm hoping my ER+ HER2- cancer is still slow-growing.

Regards,

Cindy

[valentinecalico in reply to Hazelgreen]

yes we are quite similar in our diagnoses. Mine were 14 years apart and I just turned 64!

[Bettybuckets]

Hi Cindy-I also have lobular with Mets found in June 2020! I know JUST what you mean. It felt like my bones was splintering but just for a second and came and went thru out a two day period. I had a bike accident more than a month ago which a scan soon after didn’t show much- still stable disease was all they said… but I wondered if there was a hair line fracture in there that cancer was disguising. My onc and later my chiropractor were not concerned so maybe you should not be either. But if this awful stabbing comes back full time, I would really panic… and would see about getting it zapped. But that was aug 4th the night of the billy bowl concert at Fenway… so I am think it was from sitting in a tiny seat unable to move. Glad it stopped and hope it does for you too.

[valentinecalico in reply to Bettybuckets]

thanks for your helpful reply. This site is so much better than google!!! All the best to us Lobular mets people - and everyone else too of course. xo

[PJBinMI]

My "rule" for myself with this lousy cancer is that if I even thinking about calling my onc, calling another of my docs, go to the walk in clinic or the ER, I do it. I think we have very little wiggle room and I would rather use those resources a little too often than not quite often enough.

[valentinecalico in reply to PJBinMI]

that makes a lot of sense and is something I will do in future situations. In this particular situation, I saw my medical team within a few days anyway and my scans are due,,,,,but if that wasn't the case I think you are right - don't hesitate, and go more often rather than less often. Thank you for responding.