Bone Mets Thread
Comments
-
Hi All,
I’ve recently been Dx with bone mets and the recommended trearment is Verzinio. Is anyone familiar with this? It will be used in conjunction with Faslodex. I was previously on AI’s; which obviously failed
Thanks for any help with my fact gathering!
0 -
Zarovka - Thanks so much for the encouragement.
Using ibuprofen, heat and thinking about other solutions vs. opiods. I have a script but prefer not to take. Anyone using prescription marijuana? I'm thinking of asking about it today. Might be easier on my digestive system and could possibly help me sleep.
I made it to today. Starting chemo. Like the first day of school, Lol!
Thanks for getting me here.
-JeeNee
0 -
I had a progression on Faslodex several years ago. Now the mutation. My Med Onc did genetic testing on my cancer cells to get this information.
- Jee Nee
0 -
Thanks bigbhome and everyone for your support. I have heard of meloxicam from my primary care. If the ibuprofen doesn't keep up, I will ask about that. Heat with ibuprofen seems to be helping. Early morning is the hardest time. I'm off to the hot shower and then to the hospital for treatment. Will let you all know how it goes.
- Jee Nee
0 -
Jeenee...I have a Sunbeam heating pad. In fact I have two. It's a flat mat that you put under your back to lie on, lie a tiny electric blanket, and you hardly know it's there in so far as it doesn't feel lumpy under you like heat packs do and because it's electric you don't have to keep heating it up. It's been an absolute boon for me and, with winter coming for you, I'm sure it would be very useful and soothing. I'm so sorry you have such pain. As far as narcotics go, it's your decision entirely, but recently my pain reached a new high and I had to give in and see my oncologist for help. He told me that I'm not helping myself by trying to be a hero and that there's no medal for coping with severe pain without help. At the time he gave me Lyrica but my pain wasn't nerve pain, it was pain from the mets so Lyrica didn't help. He prescribed a 72 hour Fentanyl patch and it's helped me a lot. The pain was making me immobile which lowered my quality of life too much. I'm also a very positive thinker but pain does things to your brain. Once my pain level decreased a little, my life improved. This is just my opinion but I can highly recommend the Sunbeam heating pad. I've tried to include a link so you can see what it looks like but it doesn't come across, unfortunately.
0 -
Aurora, are they sure? Is there a second test they can do, like an ultrasound?
Sucks to get progression news.
Stupid cancer!
0 -
I’m so disappointed. No treatment today. Platelet count low.
0 -
Luckylegs- Verzenio is Abemaciclib which is a CDK4/6 inhibitor. It can be used as a single agent or with an anti-estrogen like Faslodex or letrozole etc. It is the newest one approved and has some differences from the other two (Ibrance (Palbociclib) and Kisqali (ribociclib). You could look at the thread on BCO it has not been active lately-but, I suspect more and more people will be trying this drug. You could start your own new thread and see if you can find people that were in one of the studies of it or are starting it as well. Sounds like a very promising drug!
0 -
Photo from our holiday in the Maldives.
0 -
Who knew that Huey Lewis wrote the theme song for metastatic breast cancer patients...
I want a new drug
One that won't make me sick
One that won't make me crash my car
Or make me feel three feet thick.
I want a new drug
One that won't hurt my head
One that won't make my mouth too dry
Or make my eyes too red
One that won't make me nervous
Wondering what to do...
0 -
Ha! Well done Milaandra!!! That should be the MBC theme song. Maybe we can even tweak the lyrics...
0 -
jeenee, i take m3dical marijuana for my pain...tincturees and edibles, it does help. Also helpswith sleep.
L
0 -
Kathleen, beautiful picture to hold when you need those mental holidays.
Aurora, good luck tomorrow. Keep us posted on next steps.
Aww, Jeenee, so disappointing not to have treatment. Hope those platelets go up and treatment is rescheduled toot sweet.
Lita, always great to hear from you. Hope you're having a good night. I got my medical cannabis card and bought some CBD tincture. I have heard that high THC compounds are contra to ER+ bc. But I talked it over with my MO who said basically do what you want, there's no hard and fast evidence either way, and if it helps with pain, sleep, appetite, got for it.
0 -
Jeenee wanted to just let you know (you may already know this) I drink chaga and that has helped keep my platelets and other blood values high I was told because of the natural beta glucan in it. Maybe that could help if you haven't tried it already.
I also wanted to ask about you comment yesterday regarding the letrozole. Do you know the gene mutation that can cause this issue
0 -
gonna try it Lita. thanks
0 -
what is chaga? where do i get it?
0 -
Wendy - I dont know the name of the mutation. I can try to find it in my blood results but I think it was included in a genetic testing report that was read by my Oncologist only.
0 -
I'm taking the oxycodone. Gave in. Need relief now. So sad. Tumor markers are 80 (CA-15-3) up from 54. Liver enlarged. Right hip and lumbar spine progression and pleural space too. Too much news in one day. Hoping for platelet increase and treatment next week. Onc will do something, one way or another - if cant do eribulin. Ladies, I need some good jokes ;-) please.
0 -
Jaylea - thanks for the encouragement. It helps to be heard.
0 -
I'm wit.h you Milandra. I think we need the Mary Jane.
0 -
I'll try if you'll try.
0 -
Jeenee you can get chaga mushrooms dried in a powder, dried in big chunks (what I use) or capsules.
It available at every health food store around here. You could also google what else has Beta Glucan in it and eat that as well. I buy the big chunks and seep in in my slow cooker on low for eight hours then mason jars and fridge and I drink two glasses a day. My oncologist told me yesterday my blood levels were better than her own. I hope you get that treatment next week😊 Also I'm a big fan of Mary Jane as well.
0 -
I am 1 year from my initial MBC diagnosis after bone (spine, left rib, and both hips) and lymph node activity. I just had my 3 month scans this month. My CT scan showed NED, but my bone scan showed a new area of activity in one of my ribs on the right side that was not there before. I freaked out about it, but my onc told me that it was nothing to worry about because it did not show on the CT scan. They had me do a rib xray in case the activity came from an injury of some kind, but that xray came back negative. I am not having any significant pain around that area either. I'm concerned that something should be done, but I wanted to ask if anyone else has had bone scans show something like this and your onc said it was nothing to worry about. All the other areas of my bone scan where my previous cancer was all showed stable. I am currently on tamoxifen and completed 6 months of weekly chemo in April 2017 (taxol). Thanks in advance!
0 -
Jaylea,
Yes, stay away from high concentrations of THC...it's not good for BC, but the CBD aspect of Med MJ is fine. That's what I take. I take a tincture that is 20:1 CBD to THC. It helps with pain and inflammation.
L
0 -
Hi everyone! Does anyone know how long steroid injections in your knee are supposed to last? Mine was 5 weeks ago, and I woke up in tears in the middle of the night because my knee hurt so bad. Also, do skull mets hurt when you touch them? Just wondering, many scalp has gotten pretty touchy in spots. Not comb your hair touchy, just when I touch or shampoo, and only in certain spots.
Lita, So happy you are sharing your vast amount of wisdom again! How are you doing?
Hugs and prayers,
Claudia
0 -
Hi everyone! Well the not so great news is that the loose mets that have been controlled for four years of different treatments have now turned into a 1.4 x 6 cm tumor so I’m leaving Abraxane and going to Gemzar if anyone of you know about Gemzar or a good Gemzar thread please let me know. Fortunately I’m asymptomatic so I’m not in pain.
Aurora
0 -
Aurora, So sorry to hear about your progression. I will be praying for you.
Hugs and prayers, Claudia
0 -
Workingmom10 - If there is a new met showing on the bone scan, the CT scan would most likely show it in greater detail. My rib mets always show up on CT scans.
Also, ribs tend to be painful. If nothing shows on the xray or CT, sounds like a good chance there is nothing to do with the bone in that area.
Good News!
0 -
Aurora,
I am so sorry to learn about this progression! Glad you are not in pain and praying the Gemzar does the trick to stop this in its tracks!
-JeeNee
0 -
Hi Bigbhome,
I can feel my skull mets, at times more than others, but they are not too sensitive. Sorry if you have skull mets. The thought of cancer anywhere near my head has never been an idea I want to accept...
- JeeNee
0
