Bone Mets Thread
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I-beat-it... wow ok thanks. I put a post on FB and everyone was saying an IR...im thinking with my spine?? Hrmmm. I just left a message for the Neurosurgeon I consulted with when they found the C7 last month...but I will google what you mentioned above.
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Nicole,
I had radiation to 2 areas in my pelvis about 7 weeks ago. I wasn’t really having pain issues, but the meds seemed to be working everywhere but these spots, and I am a runner and didn’t want to risk a fracture. They did warn on bladder and bowel issues, I had neither. My RO showed me what she was hitting and the margins. Super small margins! I noticed some really fatigue 2 weeks out and my red and white cell counts dropped first draw post treatment but, they both came back last draw and my TMs took a big plunge in the right direction.
Best
Stacey
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Thanks Stacey! I am glad your TM's are moving in the right direction. I consult tomorrow at John Hopkins...so we will see what he says
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Hey pianolady, do you ever accompany violinists? My user name vln rph stands for my hobby/avocation and former profession (retired several years ago).
So Joyner, because I used to help patients optimize their drug therapies in terms of when to schedule various prescriptions, let me dust off my pharmacist hat and throw out a few ideas. Nutritional supplements are usually better absorbed with food, as you imply, and the potential for them to upset your stomach is minimized by having eaten at least a little something. You could actually take your entire weeks worth of vitamin D all at once.
Hopefully your aspirin is enteric coated. I have my husband take his in the evening since there is a theory about heart attacks occurring in the wee hours of the morning. If you have the anti-platelet activity going on then it should help keep blood flowing instead of gumming up the system. I'll have to look up Xeloda to see whether other concerns apply however it sounds like noon should be a good time to take the vitamin and a turmeric, with lunch.
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vlnrph-
Thanks so much for the guidance on supplements!
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nicole rod - i had multiple spine mets, but the worst mets were L4-S1, (in terms of extent and also pain) had laminectomy with screws and rods after kyphoplasty. the concern was that the kyphoplasty would add some weight to L4/L5 and because the bones were so damaged from cancer they were afraid the vertebrae would collapse and therefore reinforced the bones with the screws and rods. the kyphoplasty was done by IR together with the neurosurgeon. hope that helps.
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Hi all! thanks ts.
I had my consult with the RO at Hopkins today.
I have driven there more than a few times but today...OH MY WORD!!!!! My husband and I literally saw a woman take her pants down on the sidewalk and just go to the bathroom....we were both "traumatized" to say the very least. Its also horrible just trying to find the doctors office....Unfortunately though for me...my IR is there and he is the HEAD of the IR department so I may have to go back if I do the Y90 on liver mets.
I was actually surprised he gave the RO at my cancer center really good praise saying he is very skilled in Cyberknife (SBRT). Any way. I liked him because he is definitely willing to treat with local therapy and not just rely on chemo (which has yet to work for me). He said the SBRT to my sacrum would take like 5 visits or so. He also made it "seem" like radiating the C7 isn't as big of "DON'T DO IT" as the neurosurgeon seemed which I was very taken-back by...but did agree that there is not a rush to do it right now since I have no symptoms there and that if I did want to then he would also have me consult with the SPINE RO there at Hopkins. He did say that radiating my liver mets he would do over 3 weeks!!!! Instead of a high dose at less visits...I definitely do not want to commute to Hopkins (an hour and half to 2 hour ride depending on traffic) for 15 days. I liked his idea though about how he would do it....but I'd have to see what the RO at my place says but the RO at my place specializes in Neck and Head not Liver...and the Liver guy doesn't have good reviews
Now I most definitely won't go with him if I do the SBRT for the spine only because since he gave the RO at my center good praise why go in there if I don't have to thats if I even do the neck. My main questions were about if SBRT is better to the liver mets than TACE or Y90...he said he doesn't really think 1 is better its just less invasive than T or Y90.
That was pretty much it. Cross posting.
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Well unfortunately ladies I don't think my sacrum was hurting from tumor flare
Because it got better for 2 days after the granix shots stopped and yesterday at chemo I got the neulasta and now its hurting again... so it must be from those.
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Nicole, at least you know what it’s from and better than bone mets hurting. Those shots really cause extremely uncomfortable bone pain. I hope you feel better and don’t have to take them for long.I don’t think the doctors really understand...
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Wanderingneedle, I saw that you had multiple chemo regimens - How were you while on Tecentriq (atezolizumab) and Ixempra (ixabepilone)? Were these tolerable for you? I haven't come across these chemo regimens often.
NicoleRod glad to know that the pain is not from another met (one less thing, I guess). When I got Nupogen and Neulasta shots, my NP always reminded me to take some pain medication soon after the shot. Since I have extensive bone mets, I am on pain medications just to go through the day.
The spine mets have spread through out all the vertebrae bones (C7 to sacrum) and near T8, the tumor has invaded the epidural space. I'll be seeing a RO for radiation to this area since it is the most painful spot.
Right now I am on Piqray since 5 weeks, but my MRI shows progression in my spine. I guess it is not working for me. I am getting a PET scan to confirm this. My MO has suggested going back to chemo and I am wondering about my treatment options.
Any suggestions about 'easy' chemo would be welcome!
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S3K5 Wow you have Stage 4 for 7 years ???? and you are HER2-??? I have never met anyone Stage 4 HER2- that is 7 years out!!!!! What treatments have you done for Stage 4 besides Faslodex Piquray and Xeloda? You didn't do Ibrance/Letrozole??? Doxil - chemo?
Well lucky for me Claritan D and Motrin is totally helping with the pain
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S3K5, the tecentriq is immunotherapy for TNBC that was just approved last year. It didn’t work for me except to kill my thyroid. I had only one dose of the ixempra and it was brutal. My new doctor said it was some nasty stuff that she would not use. I’ll soon be starting Trodelvy, another newly approved treatment for TNBC. Hoping it works for at least a little while.
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Nicole, I'm HER2- and 10 years Stage IV!
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Amazing, LuluBee!!
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Nicole, just want to add I know several others on BCO who are 9 and almost 9 yrs out who are also ER+/HER2-.
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Wow thanks ladies for that info about others ER+ HER2- long term surviving....thats sooo great to hear.
I am wondering though what their GRADE is? I mean Bliss I see you are (like me) Grade 3... I wonder if they are too... either way it's so great to hear!
Wander...sorry the Tecentriq destroyed your thyroid...
. and UGHHHHH so disappointed to hear that since that may be my "hair Mary" next treatment Does Trodelvy cause less side effects? I wonder if they have or will try that with Abraxane like the Tecentriq
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Nicole, the Trodelvy is a single agent right now. It’s been out for about 6 months. My new doctor only does breast cancer and does research in TNBC and this is what she is recommending. Lots of premeds (I hate the steroids) to avoid reactions and standard side effects like nausea, diarrhea, neutropenia, hair loss. I can’t find anyone on this so I really don’t know how awful it is.I have yet to get diarrhea on any treatment so far so we’ll see how this one goes. I’ve lost my hair before so I’ve dealt with that trauma and not a big deal this time. I’m running out of options and having my hair won’t help me if I’m dead. The Halaven worked really well until my cancer mutated; I had 12 cycles and was feeling okay. No more abraxane for me. I had it twice and it didn’t work. You’re ER+ so lots of options for you. I know it’s really frustrating to keep trying things and nothing seems to work but I believe you will find something that works for you.
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Thanks for all the info Wander...unfortunately that whole "people that are ER+ HER2- have so many options"...well I am finding all too often that those of us do have more options but what good are they if we are just blowing through them?? Look at me I am on my 4th line already in 1 year NOTHING has worked...so much for ER+ being the "better" one to have. I actually don't have all that many options left....I do know that when I was diagnosed I had 10% genes PDL-1.... so thats why I asked my MO if we do, do Abraxane next can we try adding the Tecentriq.....and she said she doesn't see a problem with getting that approved especially since not 1 ER+ treatment has even worked yet....
Personally I think the HER2+ people have it the best IF, and ONLY IF they respond to Herceptin...women are living 10, 15 and even one on here 20 years..... but their downside is brain mets..though all of us can get mets to the brain.
Anyway it all stinks. I am just praying I don't have the horrible side effects I just read about on FB from a women on Halaven once she hit round 3 (3 months in) ...
I think I am having a side effect of Tinitus??? >ear ringing...
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Good point, Nicole. One I know is Grade 1, some don't list the grade, but I'm guessing at least Grade 2 for others. Most Grade 3s are also HER2+. Sorry you may have tinnitus from meds. That sucks! Just one more thing you need, right? Ugh. I have tinnitus, but had it for years before bc and have just learned to ignore it.
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Thanks Bliss... its not there all the time... Im hoping it stays that way...but again I have only had 3 doses (or 1 and half rounds)
. so the chemo builds up in our systems right? Ill just keep on praying something works with minimal side effects.0 -
I'm with you NicoleRod. It all stinks. There are so many stinkin' variables beyond sub-type which make each of our cases so very unique...de novo or not, grade, location of mets, mutations, other co morbidities, our bodies tolerance to these toxic drugs, age, weight, life style, etc. Heck, even our oncology teams can influence our outcome. What one doctor may recommend isn't necessarily what another doctor would recommend.
I can make myself nuts if I think of all the factors influencing my lifespan. Or more important for me is my QOL. I'm a QOL girl all the way. I'd rather have two good years then 10 crappy ones. Other then immediately after my diagnosis, I have been positive. But I am also a realistic person, so I also worry. I'm not wallowing in worry but heck, I think anyone in our situations is going to have moments where they worry.
Ok, now I'm rambling. Thanks for listening. Love to all. I wish you all a day that you can fondly look back at and say “I remember that day and it was a good day".
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Thanks RK...you sound great.
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Wow, I've only been off the board for a bit but I missed a bunch! As an update I saw my MO. It appears that the area in my left tibia may actually be avascular necrosis. She felt that it would be very unlikely to be a met given the size and location so I am waiting for a call from an orthopedic surgeon to decide what we are doing about that. I do have a progression with a small met to the right iliac crest but she felt staying on the Verzenio at 150 BID was still our best course. The only med change was that I am having a lot of pain with the Faslodex so we switched out to exemestane (Aromasin). I am still in the process of learning more about that but it's nice to get a break from the Faslodex. It was literally a pain in my ass and it hurt to sit or roll over in bed and nothing I could do relieved it. I got to the point that pulling up my pants hurt so I am relieved to be taking an oral instead of an injection. Hopefully the pain in my rear will start to subside now.
I'm very empathetic to those of you who say you are doing your best to live life fully. I've had a lot of up and down with that this month. I have worked really hard not to focus on the person I was before cancer because she's gone. Pain unfortunately is a constant in this for most of us and I'm tolerant but some days it gets to a point where it's just too exhausting. I'm 43 but feel like I'm much older most days. I have found that staying positive and focusing on living instead of just coping is a daily choice. Sometimes I find myself having to pep talk myself several times during the day. I'm just tired from it this week. Today was a good day and I'm hanging on to that. I'm going to start walking in the mornings on days I don't work. I think that will help. We are close enough to the California fires that the smoke is bad but still pretty clear in the mornings so that's my plan until I know more from the docs. Hope you all have a good week.
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S3K5, hi, I am so sorry about the progression, I have also got progression in my spine since I started treatment. mri showed 2 Mets in my epidural space, I believe these Mets in my epidural space are related to a lesion in my spinal bone when itfractured the lesion entered to epidural space. I am wondering what kind of treatment you will get for this specific areas in your epidural? Radiation? Which kind? Are you gonna see RO? Thanks
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Has anyone gotten proton therapy? I am consulting in 2 weeks with a new RO and I want to ask about it.
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Nicole, I had to look that up. I had never heard of it, but I’m new to this thread.
Had my first Zometa infusion today. So far so good. I came home and took an hour nap, but I usually take a nap midday anyway. This one was just a little longer than usual. I usually take about 20 minutes. I do have a headache. They gave me Tylenol at the office, and I’ll just take a few more before I go to bed.
Neck, face, and orbit MRI on Thursday, along with barium swallow. Has anyone had mets show up in this kind of testing? I’m not sure if neck MRI also shows the top part of the spine. I don’t think I’ve had an MRI that went above my lumbar.
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The MRI would be called Cervical for the neck.
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Okay. Then maybe not. They’re doing the MRI to see why I’m having such a hard time swallowing. It is just listed Neck/Face/Orbit.
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I-beat-it - i had mets to my epidural space. i had surgery to remove as much as they could and then i had SBRT, (sterotactic radiation therapy). previously i had "regular" radiation therapy and it didnt stop the tumor from growing. i am currently on immunotherapy and that together with the surgery has helped tremendously, in terms of diminishing the amount of tumor.
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Nicole, I think I read a couple of posts on this board from ladies who’ve had proton therapy to the breast but not to the bone.
It’s very expensive and many insurances won’t cover it. Mine wouldn’t even cover SBRT to the bone
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