Bone Mets Thread
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Positive…I never felt felt any different during my 7 days off but some women do feel better. For Faslodex, I would start getting hot flashes the week before my shot was due. In my mind, that is counterintuitive. 🤷
As far as pain is concerned, it's always hard for me to determine what is mets pain vs muscle pain from being inactive vs old age aches. If the pain continues but is tolerable, it might make you feel better mentally to send a note to your oncologist in the portal. If it is getting to be in the 5 range on the pain scale (gosh I hate the pain scale so I can't believe I'm referring to it lol), I'd call my oncologist and let them decide if there is cause for concern.
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Pearl Girl,
Thank you, I see you were DX in 2014 and then again in 2020 with stage lV What was the difference. I am so happy to hear you are doing well.
I am currently on Faslodex and Ibrance. I have no word yet if it is working
Keep in touch
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RK 2020
Thank you, tonight I hope to attend a Halloween performance. A musician we know. All the adults go in costume, it is Hollywood. I am no5 much for dressing up and now the effort to even do my hair or make up is a challenge. I will go with my one crutch. Any ideas for a one crutch costume. Maybe if I have energy I should wrap it in an ace bandage.
Back to pain, I feel overnight I became 20 years older. I never had any real pain to speak of until my leg started in Jan 2021. My husband is 16 yrs older and has always had back problems so I do all the lifting, bending,etc. he really has been waited on hand and foot as I got him that way with 3 sisters that worshipped him. He is excellent in business not never did any thing domestic…hard to believe but even buying groceries is so foreign to him. I have spent years worrying about him. What a difference a day makes. So with all of you I am working towards being positive 2 Strong.
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Hi Positive,
Good luck on the Halloween costuming. (I know it's a little late.)
I was DXed Stage IV in 2014. I don't know why some stuff shows up in my profile, like new mets in 2020. They've shown up all along.... Like, it says Met to brain in 2013. Huh-UH! I don't know how to fix that. Not actually that motivated to care what my profile says. My life is what matters more!
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Pearl girl,
I agree your life is the most important. I am hopeful when I see long timers. I hope you will continue to give me advice and hope. When I feel good, I think I may live and when I feel bad I then have to work really hard to get the negative thoughts out of my head.
My costume was somewhat a non costume… I wrapped my crutch in ace bandages like a mummy and I had a cat mask that I never really put on but but that on my crutch also. I did wear a goldfish long dress so I don’t know what I was but At least I went out. We went to 2 clubs with live music. The performers are our friends and many of the club goers we know. And yes, I kept thinking will I be around to go again. I haven’t told anyone and they just think I had a broken leg. I try to think I am just like before the same person but I know am not.
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Positive to Strong - the new pain could be from walking different with the crutch. I hope it feels better soon. Glad you were able to go out and enjoy the music - enjoying life is medicine we all need.
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Go Kale thanks I am tired today and I go in fir follow up with RO an X-ray in leg and my injections
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Update…Today I met with RO and finally received some info. He says I am grade 2-3 and showed mee where Mets are. To me it seems a lot, I didn't count but he said no he has many with much worse.
What I can remember seeing, one in neck, one behind right breast, I guess in lung, right femur, left pelvic, lumbar area in spine
Left side second rib,
My blood count was low today so mo MOnis putting me on 75 mg Ibrance. RO order pet scan ct scan for Nov 22 Mo thinks it is too soon said I only started Faslodex on Sept 1 but I actually started earlier in July
RO said I could get radiation for my pain in side the rib cage met I said I like to wait til after scansSeeing all the Mets and hearing it is pretty aggressive cancer is jolting my positive2strong attitude
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still having problems lifting head after radiation to top of spine/back of neck area especially when in standing position
It’s driving me crazy it’s been a few weeks now 2-3 since radiation and it feels a bit stuck in that position
Just wondering if if anyone had this same issue just wondering if normal
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Beth1965 - sorry to hear that you’re having trouble with your neck. Have you contacted the RO? I would ask if physical therapy would help.
Positive 2Strong- keep in mind that the mets are still just bone mets. These drugs are powerful and can take care of these mets. People have had numerous bone mets and the drugs took care of them. Radiation also helps a lot.
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Beth1965 - I did not have your experience after cervical rads but if I remember correctly, you went into radiation in more pain then I had. I would definitely reach out to RO. Hugs…gentle ones.
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Hello all,
Thought I would let you all know about ways to address tooth issues while taking bone strengtheners. I’m learning all this because of a tooth that’s gotten wonky. These issues impact anyone who takes Xgeva, Prolia or Zometa, so friends with arthritis are in the same pickle.
The drugs coat the bone and don’t allow bone to regenerate or retreat. Check out osteoclasts and osteoblasts. Good for bone Mets, bad for healing after a tooth is pulled or surgically removed.
The drug stays in your system a long time. Even after six months (the longest space between treatments I know of) there’s still lots of drug in your system and that increases the risk of osteonecrosis ONJ.
There is a blood test you can get to find out how many osteoclasts are in there to see whether it is safe to remove a tooth. More to come
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Go Kale,
Thank you, I need daily affirmation. Last night I was really sick, head ache, jaw pain, off balance, and pain in left side. I really didn’t sleep, then at 7 am I took an ibuprofen,ate some toast and steamed some water for my head.
Then I could sleep til 1 pm today. Not sure it is my low white cell count or reaction to injections or other
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Iwrite thank you for the information. I need to get going on this situation now. We have held off on the bone hardeners until I get this taken care of. I know I can’t put it off much longer
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thanks girls I phoned today to get help for some reason the one doctor thought I would be fine that’s why I was wondering if this was normal. It isn’t seeming normal so hopefully they can help
Iwrite -thanks for the useful info
Positive -that’s what doctor said to me to many to count but also said treated people with more. Sounds like you are having a rough time right now sending hugs to you
Glad to be here on this thread helps so much to be with others that have hadto go through this and understand the questions sometimes just the fearful feeling you get sometimes 🥰
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Beth1965
Thanks for thinking of me. I feel good and I think I am on that path of a somewhat normal life.
Then I get sick again…..I first took Ibrance 125 and was in bed sick most of the time. I had blood clumps in my nose.
Then I went off it got better took Ibrance 100mg for 5he full cycle and no side effects. I went to Vegas and even went out Halloween
Then Monday I found out I have low white cell and blood in nose again and feel horrible like a bad flu, headache, jaw ach3 really can5 sleep and on and on I go Monday again to have blood taken.
Hope you are doing better
PS yes I get just vague answers from Mo I go5 more info from RO on Monday. He seems more on top of things
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I write, I will be watching to compare my experiences. My molar cracked, needed a crown and the jaw pain is still there a month later. Moves around a little. On an antibiotic now. Pretty worried.
Tomorrow I see the PA. I'm betting she'll say to do scans. Especially when I complain of my other ongoing pains one of which has gotten worse yet relates to my met in shoulder. Do mets start to grow again after being dormant for 4 years? I mean rather then forming a new lesion somewhere else.
GAILMARY
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Hello ladies (and any gents in the club),
Beth65 - I hope they can give you some recommendations that help with the neck pain and stability. It sounds miserable.I'm so sorry you are having this experience!
Positive2strong - I've been on 75 mg, two weeks on and two weeks off for at least four years. The last few days on each cycle I'm really tired and I have mouth sores for the first week off. Then I get two good weeks. There are lots of side effects to these treatments and I'm trying to get used to dizziness, tingling in feet and legs and shaky hands...I try to not anticipate problems. Every time they do a new scan and see the "innumerable mets" found at dx, I have to remind myself to ask if they are new or just old healed mets. So far they are old, but I have to talk myself off the ledge every time some new doc finds my pictures interesting.
GiGil - Get it done while you can. It looks like any extractions or implants are totally out for me now and risky for anyone who is on these drugs. Cost is a huge issue for me (fixed income). I found out yesterday that I may be eligible for a Komen Foundation Grant through the local Cancer Center. They can't pay for the dental work, but they may be able to help with rent or cost of living expenses which could free up funds for the dental work. I'll bet these grants are available in communities throughout the U.S. There may be something similar in other countries. I'll let you know more about the grant process.
Gailmary- Even a crown will disturb the underlying bone. I had to have a RC and crown three years ago and that tooth is still sensitive. It just takes a long time for anything to heal.
So the test to request for Xgeva and Prolia users, if you are deciding between extraction and root canal, is called Serum CTX (C-terminal cross-linking telopeptide. It's goal is to determine CTX bone marker for bone remodeling depression from bisphosphonates. Normal numbers for post menopausal women ar 104-1008pg/mL The oral surgeon said the lowest safe number was 150. My number was 75.
The last time this happened, I spent about $4k for the entire root canal and crown and it was all out of pocket. I bought Physicians Mutual dental insurance afterwards. With insurance, the root canal will cost about $700 out of pocket. I don't know about the crown, yet. So...it won't cost as much, but still a lot. If you have employer sponsored dental insurance it could be less.
It's a sunny day, so it's time to go outside and soak it in.
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Wondering if anyone has dealt with avascular necrosis of the femor from radiation? Very painful! My surgeon is concerned a hip replacement won't take because the bone may not grow to keep it in place. He also wants to be sure my Mets are stable before any surgery.
Anyone tried hyperbaric oxygen or other treatment for this condition? Thanks!
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iwrite, good info about the blood testing, thanks for posting and sharing your ex
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Does anyone with extensive spine mets/fractures/tumors and pain when sitting have a desk chair they like? My pain is intermittent, but annoying when it happens. I have a pillow I use for lumbar support and a chair that once was considered ergonomic, but it's old and just not doing the trick. I slip forward a lot and have to scoot back and keep adjusting the pillow, and on days when my back hurts it's....a pain. Given that I want to keep my desk job for awhile, and do much of my work at home, I think it's time to invest in something with adjustable lumbar support, proper alignment, etc. I don't really want to spend a huge amount of money but also want this to work, and there are so many options, I wonder if anyone with similar problems has found a good solution. I am somewhat short (was 5'5'' but fractures have shrunk me to more like 5'4" or 5'3"), so figure this might make a difference......
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prairiesea, I use wedge pillow and foldable desk those help me a lot, reduce pressure on my lower back, I bought them from Amazon. I wear a brace when I have to sit for long. Hope that helps.
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Hi everyone
Hope everyone is keeping well.
I just wondered if anyone on this thread has experience of rising CEA153 tumour markers? I had scan result this week which were stable but my markers for the last two months have slowly started climbing so I am getting really worried.
They were at the lowest in July 462 but then in sept 477, oct 498 and then nov 553.
Oncologist has said scan was stabel and rise is not enough to worry them! It is worrying me though. If this is a bad sign then I would just prefer for them to tell me. Has anyone had this ? Does it mean I am heading towards a treatment change?
Overall I feel really well and would love to stay on Ribociclib and letrozole as side effects are minimal and I have a good quality of life.
Any help appreciated!
thanks
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Hi Hamer, my 15-3 is a bit above normal & wobbles by about +/-10-15% . It doesn't seem to necessarily be very predictive for me.
It seems they can fluctuate and they're not always reliable. Some drs don't even bother taking them.
I'd take your scans as good news & ignore the markers if your doctor says they're not worries. I'd ask your dr what kind of marker elevation *would* worry him, just so you know what the threshold is.
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Hamer,
My doc uses CA27-29, and not 15-3 (comparable as far as I know). We do those each month. She does seem to look at them, even with scans, and also how I am feeling. They do seem predictive for me, even though they are not predictive for everyone. However, the stories I've read on BCO are of those folks whose tumor markers are reading within the normal range even with stuff going on in their bodies, not the other way around.
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prariesea, I also deal with spine mets which tend to ache from a variety of reasons, sitting too long being one of them. I don't work or sit every day at a desk, but when my son started his career as a software engineer and began working from home about five years ago, one of the first things he purchased was a really good desk chair. He did his research and bought the Herman Miller Aeron chair, kind of like the Cadillac of desk chairs. But they are pricey. He bought a used one on eBay for $300 and paid $100 shipping. He's a kid who is careful with his spending but will spend when quality is needed. I just asked him about it. He said the chair was made in 2002 and has held up great. So it's been well worth the cost. When dh's older son heard about it, he bought the same kind of chair.
There are plenty of less expensive alternatives, tho. Here are Amazon's best sellers. https://www.amazon.com/gp/bestsellers/home-garden/3733721/ref=pd_zg_hrsr_home-garden
Or, if you are able, go to office stores like Staples and Office Max and sit in the chairs they have to make a choice.
I would really encourage you to get a new chair. If you take a home office tax deduction, you could claim it as a business expense. Since Christmas is coming up, you could even ask for or give yourself the chair as a present. Sitting comfortably, whether dealing with mets or not, is important and it's worth it to find yourself a good seating. You're worth it!
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Hi ladies,
I'm tired of the pains in my arm and just asked MO to move my scans up a month. I'm wondering if or what if anything makes your bone Mets hurt more than usual. I have a hard time believing that this pain could be anything else. I've had pain at several spots in arm and shoulder over the years.
When I was 10 yrs old I broke my arm 4"above where it hurts now 3" above elbow. My 1 met was in the head of the humerus bone. I've had 2 rotator cuff tears and that's the side the lymph nodes were remove. Arthritis led to cervical radiculapathy but epidural didn't change that pain. And now the pain is getting worse. I had scans in July. Nothing new. My arm hurt some then but we thought it was the arthritis. Hard time believing this is still from the arthritis, it's pretty strong. And the usual ibuprofen, heat and cbd aren't doing the trick. Can I go ahead and use my arm anyway or is it going to hurt more. Call it exercise or light yard work. Or even just sewing.
Ugh. I don't know how you all do it. I know I've been lucky so far and it inevitably will progress. Been 5 yrs on faslodex +. Thanks for any insight you can offer.
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So I'm back in the club nobody wanted to join. PCP called today with bone biopsy results. I've been lurking here for the past month while tests were being run, thank you to everyone who has made this seem do-able (although I'm wondering whether at 77 I will have the same stamina I had at 61.)
Anybody here being treated at UCSF ?
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Hello all strong smart ladies,
I wish I knew more to give knowledgeable input. But here I am again to ask questions.
As you know I went out for Halloween and then got a bad cold flu and was in bed again for 4 days, then found out my white blood cells were low and couldn’t continue with Ibrance…so of course I have been down and I just don’t sleep. For 2 weeks blood tests showed down and was worried about going out eating salads etc. Now today I finally got better news and finally a bit of specifics from MO my blood levels are ok and I can start 75 mg Ibrance. And she finally told me my tumor markers were 134 in July and today it is 84 or 64 I was so elated I couldn’t believe my ears. I haven’t cried once thru all of this but I cried today and the assistants hugged me. So okay do I have it right to be happy. My right thigh still hurts from surgery from Sept 9 and I have a pain in left side,so all I could imagine is nothing is working and Mets/ tumors just growing . So am I right to believe the medicine is working and there is hope.
I am hoping to go to Palm Springs on Thursday as my husband has work there and my son is racing…..so I hope to have a big celebratory dinner.
I am not a drinker but will a glass of champagne interfere with Ibrance and Faslodex. I know I should ha e asked the MO.
I have kept a fortune cookie 🥠 message that said you will hear good news, I hope this is good news.
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that’s great that the tumor markers went down . What tumor marker tests do you get . I get the CEA AND CA 15-3 .
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