Bone Mets Thread
Comments
-
Sondra- My MO states for me to use Tylenol--- Tylenol Arthritis which is extended release Tylenol, used every 8 hours vs 4 hours. My doc said not to use Ibuprofen due to the stomach issues it can cause.
She did give me a script for a few Tramadol pills. A few with no refills. I have not given in to using them though. I don't want the fog and I already have constipation issues.
We do not have Palliative Care in our area to help with pain management. And we do not have acupuncture available either.
So I just deal with the pain. Kind of.
Sorry you are having the confusion. Would be nice to be able to label the pains--- arthritis or cancer.
0 -
Hello,
Over the past year this website has become a lifesaver and I’m extremely grateful. It just gives me so much hope and optimism to hear from different woman going through their own cancer journey. Today we found out my mother has Bone Mets. And I’m wondering what exactly should I be expecting during this process. I won’t lie I’m extremely scared and paranoid. Everyone I’ve spoken to has explained to me that it isn’t a death sentence. I just hate to see her in pain and knowing that she will suffer with this for the rest of her life? Any advice would help.
0 -
Mallory3520, I have extensive bone mets. As far as Mets go, bone mets are the least threatening (or so I've been told), you can live years with them. I do believe we have a poster here that is going on 20 years. The pain will subside a bit with radiation and chemo, I went from being barely mobile, in a back brace and using a cane, to almost having a normal life 1 year later. It's certainly not easy and there are days my back hurts still, but it's doable.
0 -
I had my MO appt today. I posted 4 days ago that I saw my CT report and there was "no change in skeletal mets" but I am having increased spinal pain. So we are going to do another bone scan- if the insurance ok's it. My MO encouraged the Tramadol use. I have not been using the pain pills due to the chronic constipation issues I already have. She also recommended acupuncture but I don't think we have that locally. And I asked about consulting an orthopedic oncologist and she said it wouldn't hurt. But, yet again, no one in our area so I would have to travel for the consult.
So bone scan and need to check into the other things with phone calls.
More updates later.
0 -
hi Candy,
I’m an acupuncturist. Where do you live? Feel free to PM me.
hygs,
Philly
0 -
hi Candy,
I’m an acupuncturist. I may be able to help you find one. Where do you live?
Best way to find a state medically licensed and nationally qualified practitioner: https://www.nccaom.org/find-a-practitioner-directory/
Feel free to PM me.
hugs,
Philly
0 -
Philly- PMing you now.
0 -
Hi Candy. Have you tried Tramacet? I take it all the time for bone pain and don’t experience the issues I have with Tramadol. It’s a combo of Tramadol (lower dose) and Acetaminophen.
0 -
Sadie- Never heard of it. Maybe something with Canada that U.S. doesn't have. I will look into it though. Thanks.
0 -
Hello. I would like to ask, if any of you who had radiation -Sbrt or cyberknife. when and how was the treatment response? I have single bone met in TH10, had cyberknife in july and started kisqali in august. The suv went down in half. The PetCT in april had suv 8,7 and now it is 4,7. Do know if it can go down even more with the time? Thank you
0 -
WOW...I just peeked at this site for the first time in a long time, and there you are..... so many of my old buddies from the Ibrance site! I've been on Xeloda since Feb after some progression on Ibrance/Faslodex. It's so nice to see your names and hear your voices again, whether for good news or for less than good. Such a wonderful, supportive group of friends. I've missed talking to so many of you!
We're still fooling around with boats. We're selling the one we bought last August and brought back from Wisconsin to VA (with some of you riding along online for the adventures and mishaps), because we realized that the flybridge (upper level) with its ladder wasn't the best possible idea for compromised bones (still bone mets only). I can go up and down that ladder without a problem, but in rough, rolling water, if I were to take a fall from the ladder, it could be bad (and stupid). SO...on to the next: a boat without a ladder to the flybridge! We're looking at one in New Bedford Mass next Friday. If we get that one, we'll bring her back by water through Manhattan again and down the Atlantic to the Delaware to the Chesapeake. I'm already sweating the ocean leg.....ninny.....
Hugs to all of you!!! xoxoxo
0 -
Ladies who had fractures from mets, especially in the spine, how severe is the pain? Do you just know? I've been going downhill with being able to walk for the last three weeks since I wasnt allowed to see the chiropractor. I just had to come home from work this afternoon after getting nervous that the pain in my lower back was going to make it impossible if I didn't. I can put some weight on my right leg but not what I was able to this morning or earlier in the week. No nerve pain, but I am also wondering if its hip bursitis possibly.
Going to call the nurse here in a minute - the pain is fine if I dont walk and just sit or lay down. But my pelvis is so stiff I know my gait is really off. I did just start the goserelin on Tuesday though I cant imagine this would be some tumor flare already!
0 -
Maaaki, I had cyberknife to C7 back in 2013 and yes, there was a drastic reduction in SUV after 3 months. After Cyberknife,I was on Ibrance/faslodex for 18 months without progression or pain. But everyone is different, I hope the Cyberknife and Kisqali works for you.
SondraF , sorry to hear about your stiffness and loss in gait. I haven't had spine fracture but just wanted to share what my neurologist has been telling me - with spine mets, there is a risk of nerve impingement which could cause serious problems with standing, walking, balance, etc. Since I have multiple spine mets, I have to get MRI of the spine every 3-4 months. I am not trying to scare you, but better to be safe than sorry. I would suggest that you please call your MO right away and have it checked out. Hopefully it is nothing serious.
0 -
SondraF I am going through a similar situation as you right now. I have existing compression fractures in three vertebra.(C7, T11, L4) My bony mets don't hurt (ribs, pelvis etc) so I am a bit confident that the pain I'm currently having is from a new met causing some inflammation or impingement OR a new compression fracture. I just had scans a few weeks ago and no-one said I had a new compression fracture. So that is narrowing it down further to new mets impinging on something. I did have some increased uptake on L3 and L5 a few weeks ago so I'm wondering if I don't have some damage in there with nerve impingement. I am having a little trouble walking this week and it's getting worse instead of better. Advil helps a bit. My compression fracture pain got worse over time, not all at once. Definitely weeks to a month. My MO doesn't handle this for me. I see an orthopedic neurosurgeon for my back and he's asked me to get a follow-up MRI next week. He told me that many situations where pain is in the groin points to hip trouble. Pain in the outer part of the hip/glute is often from the back. Just for perspective I can feel "catching" pain in my lumbar spine along with a deep ache, and it is hurting right across the top of my butt and down into the side of my glute but only when I walk. Sitting or lying down feels fine. One way to sort of suspect a compression fracture is if your back feels perfectly fine when lying down becuase you have much less load on the back then. I started new meds last week - now you've got me wondering about tumor flare too. I hope you can get in to see a back doctor soon!
0 -
Thanks moomla, that's really helpful. My back/hip has been a total mess since an unfortunate movement at water aerobics back in June (twisting motion), after a very long stressful period involving a lot of sitting. It was bad in the summer, improving lots with chiro through until three weeks ago when I was back in the pool and the same night out having a long dinner with friends and walking, albeit a little stiff. I've now been sitting a lot again due to work and the full spine scan the MO ordered as baseline/check for fractures scared me off chiro/swimming/walking down the street practically!
Nerve impingement could be a good shout, but I have also been having groin pain/fatigue making it difficult to raise my leg to take a step. No one has shown me my scans so I dont know exactly where my mets are, just they are in the sacrum and illiac crest. I can't lie on the bad hip either. But your comment about the pain across the top of the butt - yeah, that rings true.
I spectacularly herniated L5/S1 this time three years ago and now THAT was some nerve pain (and it took weeks to get that managed then too), and at the time they noted light stenosis and degeneration. This feels like the time I got a nerve trapped in my shoulder and I had to just lay there,supporting it with a pillow, ice, and ibuprofen for a week.
This is very frustrating but I will ask about a referral to an ONS to get some sort of definitive guidance. I guess I wasn't sure what a fracture could feel like - just assumed it would be as bad as that herniated disk!
0 -
Nice to hear you’re still fooling around with boats, Joyner. Wave when you pass by NJ. It’s good to see a former dancer
Sondra I have pretty manageable pain with bone mets. I had rads this summer to femur and pelvis. That pain bothers more at night. However I have herniated discs over the years and that nerve pain was unbearable. About a year into mets I was losing strength in the other leg and saw my orthopedist last year. Lots of PT and a guided injection gave relief. Maybe you could see an ortho for a second opinion. Good luck.
Had another progression in May. Now having chemo, Herceptin and Perjeta knock me out for 2 weeks out of 3 I’m afraid I’m getting weaker. But grateful the nerve pain is infrequent. Counting my blessing0 -
I have three fractures, T8, T11 and I can't remember where the 3rd one is. My pain is slighly higher, but nothing serous. Weird thing is, the PA said she thinks they have been there, I've been working out though since my last bone scan and none of my previous bone scans have mention of fractures so I honestly think its from working out. PA also said she isn't giving me any restrictions and to keep working out, 20 -30 minutes a day, 4-5 times a week!
It scares me so I have tapered off quite a bit anyway.
0 -
hi bigpeaches - huh such weird advice!! That seems quite counterintuitive, doesn’t it???
I say, trust your body and instincts. That is all we got. We know our bodies better than anyone else.
I feel like I have received poor medical advice before regarding similar types of things and I had to listen to my body. I would add on things little by little as I built up the trust in my won mechanics.
Last night I went to Chinatown and got myself a deep tuina massage. It can be quite rigorous and there’s a part of me wondering if this is dumb or not. The thing is, these folks are the only ones who can and are willing to go deep enough to address my aches and pains. I need deep work. I get nervous that my bones that are sclerotic may break or fracture. I’m not sure what else to do. It felt amazing!!! I don’t want to give that up!
0 -
Sondra, I would think a chiropractor couldn't help, might even cause injury. I had a new compression fracture but had no new pain since that's where my pain is. I would call my oncologist with pelvic symptoms
0 -
My C7 compression fracture doesn't hurt BigPeaches. T11 doesn't bother me too much anymore but that's the most severe of my three fractures. My back feels stiff there and sometimes a little irritated. I might say I know they're there? But they don't hurt. L4 fracture has not bothered me at all in months and months but it is currently causing me problems. Not sure whether I've got progression on that fracture or if there's an issue with new mets there. MRI will give a better picture after next week.
I've never not worked out, ( I'm talking all the way back to Jane Fonda workouts in the 80s) but I've really had to modify it this last year. When I saw the orthopedic neuro-surgeon last week he told me this....absolutely no impact excersize. My back and hips have some big issues (mets, fractures and osteoporosis) mind you so this is individual but he told me walking, stationary biking and water walking only. One foot on the ground at all times! I can hike but I have to be super careful to be geared up to avoid falls. I can't run anymore. I can't go bike riding anymore. I can't lift weights anymore but I can use exercise bands. This has been one of the bigger disappointments of this disease for me. I love working out. So I have to be happy with a 2-3 mile walk and then an hour of gentle PT each day which includes ROM, core and balance work plus some extremely light strength training.
I think Philly's right - you have to trust yourself with your own body. I'm terrible at this and end up injuring myself. This is why I love going to PT because I'm a rule follower and the PT person gives me the parameters to follow. Otherwise I'll push myself into injury.
0 -
I keep injuring myself- so trying to be careful. I tried jogging which I used to love, after my anemia went away- my foot pain crippled me for days. Won’t do that again. I do exercise bike every morning and yoga and lots of walks. I do a little strengthening but, mostly with my own body weight. I used to love weight lifting. Too many injuries.
I used to love massages, now I find myself tensing during them. I may try a medical massage at my yoga teachers place. Her DH is a sports chiropractor so the office providers areused to dealing with people who are healing.
0 -
NKB - I am curious as to why you are tensing up during massage?
Is it painful or are you nervous that the massage therapist is going to do something wrong? Or something else
0 -
My mother have 72 years now and stage four and ca 15 now is 1560
and i m scary she take armosin 25 mg and zomita every month and she have a little pain in his bone so what we can do ?
and the doctor says we will continue normal in hormone
please help me or tell me your experience please
ca 1560 is risk for her or not ? i need some advice pleasee
0 -
What are her scans like? Scans tell more than tumor marker tests. Also other bloodwork -- alkPhos, calcium in the blood?
0 -
hi ZAAZAA,
Sorry this is happening to your mom. I know it’s scary and hard to witness.
Where do you live?
Is Ibrance available where your mother is being treated? Ibrance and letrozole or Faslodex seems like it would be the next approach.
Tumor markers are reliable for some people and not for others.
Please let us know if we can help by answering yourquestions.
0 -
with the high of tumor my mother feelings good and the pain is little thats i m surprising ...and scary
How is feelings good and the ca.15 is so high ?!!
we live in egypt ...and she was in chimo before but my mother can t take chimo so the doctor deciding to take hermone
she takes armosin 25 mg and zomita every month
ibrosane is chimo? i don t know !!
and we don t have a money to buy medecine very expensive
0 -
ZAAZAA has your mother had any scans like a CT scan or MRI or PET scan or a nuclear bone scan?
I had a lot of bone metastasis as well but was not in any pain. The doctors were surprised with the amount of bone Mets that I wasn’t feeling anything.
This is not unusual.
Many doctors here do not rely on tumor markers so if I were you, I wouldn’t get too worried about that without more information like scans.
I don’t know much about the medical system in Egypt. Is there free healthcare, or health insuranc or do you have to pay for everything out of pocket?
0 -
Philly- I tense up because I fear that I will be injured I think. it started with the first massage after double mastectomy, double axillary node dissection, chemo and radiation where the docs were very afraid that I would get lymphedema. they gave me all sorts of restrictions about my arms, the masseur just couldn't remember to leave them alone- so I was tensely vigilant. I feel too fragile to let myself go into the total relaxation of a massage anymore. I know that it is mostly medication side effects to ligaments etc- but, I am constantly injuring myself- so have gotten more careful.. my last massage was in Cambodia and I couldn't wait for it to end- I decided not to have any more. I do think that if I had one with someone trained to deal with medical issues who I got to know and could modify things it would be helped- I just can't seem to pursue that right now.
0 -
yes lovefrom.. she have a nucleare scan and she take armosin 25 mg and the doctor says we will continue but she have some pain somtimes and take myofine every 14 hours to relax the doctor tell me your mother is okay with armosin and we continue for one month and we will see
in egypt we paye from my poket and we can t take insurance it s lik hell here in egypt
0 -
Zaazaa- Hope your Mom responds well to treatment! It’s hard for everyone in the family. I know my daughters care and that helps a lot!
And the money part of cancer is a nightmare. You aren’t alone
0
