Bone Mets Thread
Comments
-
Recently diagnosed with extensive bone Mets. I know there are no certain answers but I have been reading that one or two mets locations are much more favorable than extensive disease. Are there others present who have successfully avoided metastases go other locations and/or survived a considerable amount of time after an extensive bone Mets diagnosis? Ftr I have bone Mets in my spine, ribs, sternum, skull, jaw, femurs, pelvis and upper arms
0 -
April, I, too, have extensive bone mets pretty much throughout my skeleton. I have had bone mets only for 36 months, as of Feb 10. I started on Ibrance/Faslodex and 12 months ago moved to Xeloda. All treatments have been very tolerable for me. The best of luck to you!
0 -
Thank you, @JoynerL, for your reply! It was such a shock to read my imaging reports when each time a new area was imaged BAM more Mets! I have no pain other than my T12 and ribs (pretty severe compression fracture). It’s crazy to have so much going on but no symptoms elsewhere
0 -
hi April
I had extensive bone mets (like yours) and my only symptoms were sciatica pain! Apparently had bad one in my hip and I didn't feel any discomfort there! But my bone scan lit up in lots of places!! Had radiation in 2 spots and pain disappeared!
I'm on my first line of treatment since being DX in JAN last year and my tumor markers started at high 200s and last week showed they are at 36 😁
Do you know what treatment you're starting or have started?
0 -
I have extensive bone mets as well, in every bone down to the top of my thighs. I gotten Herceptin, Perjeta, Zolodex, Xgeva, and Armidex for two years now, tolerate it pretty well.
There is at least one women on this site that has survived 20 years with bone mets.
0 -
Traii,
I just noticed my tx were private! I started taxotere, Herceptin, and perjeta beginning of December. I am also getting Zometa infusions. I had my second infusion last week (was put on hold after my first due to low calcium levels) and am having some annoying bone pain this week. I hope that means it’s doing it’s job. This get sick to get better thing is for the birdz0 -
The 1st look @my spine CT shocked me. Last scan showed sclerotic lesions, which I understand to be better than the August and November scans. But the initial diagnosis and then trouble getting tx I could tolerate really knocked me off exercising. I walk around as well as anyone, but I used to lift weights 3-4 times a week and hike in the mountains 1-2 times a week. I've done none of that for 6 months. Don't think I can do yoga as I have coughing bouts when I get horizontal (from both lung fluid from mets and Kisqali). Thought about rejoining the weight lifting class and only lifting the bar, no weights, but there is alot of bending over in that class. Someone suggested water aerobics. I think it sounds like a good idea and may get me back into to physical activity that's been missing in my life, and the MO recommended I do more. Any thoughts or experience with this and bone mets?
0 -
nopink, I have spine mets that are now sclerotic. My oncologist is very much in favor of exercise for me. I did a few months of supervised exercise at the hospital gym. Still go to the gym sometimes but I do mostly cardio. plus I walk and I swim.
0 -
I just started physical therapy to get back to some level of fitness and help along my walking, etc. Therapist is aware of my mets and lower back history and assigned me three very light exercises to start rebuilding leg and glute strength, and some stretches because my hip flexors are tight and short. Things like heel raises and single leg (small) squats. I keep up my walking every day at lunch, more and more without a crutch ,and I've started getting back in the pool for 15 minutes at a time. Its tough though, Ive been deconditioning for about a year at this point, and the right leg hasnt been 100% functional in 9 months. I was a big athlete back in the day - I guess rebuilding will give me something to focus on.
My goals are to get back into the gym for light weight training, start including pilates, and get back into serious swimming shape. Guessing at least 4-6 months, but its better than giving up and letting it all go to pot!
Nopink - I attended a water aerobics class with a fantastic instructor who would really mix up the moves and include all sorts of agility and body weight stuff in her classes. In 2018 when I was first getting back into shape I used her classes for conditioning before moving on to working with a trainer in the gym. The water aerobics were a good way to get moving and get breathing - my knees aren't great and I HATE running, but I could do jumping motions and the like in the pool ok. We had little foam dumbells for curls and triceps work against the water,so it wasn't entirely aerobics. They were a lot of fun and I may go back in a few months.
I think all the warnings still apply - be aware of your body motions and how they relate to the location of your mets. I did a twisting motion in that class in June that kicked off this whole mess with my pelvis (caveat - i have a very, very long history with mechanical problems with this SI joint, I guess it was just bad luck a met decided to take up residence in there too). Just let the instructor know you may need some modifications (she/he will likely show some if there are pregnant ladies in the class) and maybe go a bit lighter the first few sessions to see what, if anything, causes trouble for you.
0 -
nopkin,
I am a huge fan of water aerobics aka aqua fit classes. Depending upon the instructor, it is not all aerobic exercise. I have arthritis as well as mets, and I can handle the classes just fine. However, as in all things, instructors differ. I would try to find classes where the instructors really pump up the class because otherwise it can be a little bit boring. All good instructors offer modifications throughout the class, or you can modify yourself (for example, if is a two legged jump or kick, you can always just do the same with one leg.) I try to do them 3x a week when I feel okay. I am on Ibrance, though, and some days the classes really wipe me out (depending upon where I am in my drug cycle). I recommend this, though. I feel good afterwards.
0 -
I would love to do water aerobics but do not live where I have access to something like that. I have thought about buying a Tai Chi DVD and starting that at home.
Do any of you avoid certain foods or beverages because of the breast cancer in your bones? I have avoided soy and a few other things as much as possible since my first breast cancer diagnosis but did not know if there were things we should add to the list if it has metastasized to bone.
0 -
Aprilck I was dx a year ago. I've been having CT and Bone scans all year but last week I had my first ever PET scan. The radiologist said I have at least 50 areas of lytic and sclerotic bone mets. I had always read that I had extensive bone mets however hearing the number 50 was daunting. My only pain is in my lumbar spine where I have a compressed nerve and sciatica. I also have 3 compression fractures that bug me here and there, especially at T11. I feel your pain. I had rads there last spring and now T11 is listed as a burst fracture. I have just 10 percent of the vertebral height at T11. That flares up quite a bit. I've also lost two inches of my height.
nopink2019 I too am avid exerciser since the 80s and love hiking in the Finger Lakes region NYS. I have trouble with exercise now though. The bone doctors say walking/ water exercise/stationary biking only. Hiking is out for me unless I take it slowly and have a set of poles. I'm a pretty big fracture risk. Yoga is also out because of the bending, however I can do some of the poses. I started out with PT before I started walking again. The therapist has really helped me with understanding what I can and can't do and what's important to do - like strengthening extremities. I'd love to get mysefl in the pool but I've been putting that off for some reason. It's hard fighting the pain and depression. Some days it's just easier to stay in my chair with a heating pad on my back. I had a great summer last year with a ton of outdoor activity and daily exercise/PT but I fell off bigtime when my sacrum fractured and my L4/L5 showed severe nerve compression. It's been about six months for me too and I understand wanting to get back to it. Just take it super slow and maybe get yourself to a good physical therapist who will explain what is best for your situation.
0 -
Thanks for all your experiences re:exercises. I'm seeing PT next week and will get some advice. Also I've found a M-F drop-in water aerobics class. Plan to give it a try. Think it will help my attitude, strength and appetite. Your encouragement is helpful.0
-
I posted last week that I was going to have a PET scan on Feb. 14. Yesterday I heard from my oncologist with the report. Unfortunately, the cancer has spread to my lower back and right hip. I’m trying to stay positive because I am starting Piqray on the 26th. This Friday my family and I are meeting with my oncologist to go over the PET scan and he’ll give me a prognosis. The waiting is the hardest thing to do. But I’m optimistic and I won’t let this cancer beat me
0 -
Hi Brennie
I’m sorry the news wasn’t better from the scan and that Faslodex/Ibrance didn’t work for you. I know how hard it can be to face early progression. Sending positive thoughts and hopes that Piqray holds things steady for a good long time
0 -
Brennie...so sorry to hear about the progression. Praying the Piqray is the drug that works. Yes, stay optimistic!
0 -
hello friends!
my insurance no longer wants to cover xgeva - I’ve been doing well on this medicine for about 3 years now.
they want to have me switch to zometa (cheaper). I know that some people experience flu-like side effects for a couple days afterwards.
Anything else I should be aware of?
Is this the drug that people take Claritin a few dahs before and after receiving the infusion?
My family and I are seeing if we can get a pardon from the insurance company to stick with the current treatment, since I’ve been doing so well on them. But not so sure they’ll approve it unless I have a very bad reaction to the zometa.
Thanks and happy Friday all!
Philly
0 -
Hi Philly!
Hopefully you can get your insurance company to let you stay on what's working for you. I had Zometa and after the first time, I felt a little under the weather but nothing more than a little tired and achy. The following times I had the infusion, my doc had them do it over 30 minutes instead of 15 and viola! no more issues. Have a nice weekend!
0 -
Philly, it's a crime that the insurance companies get their way over doctor's preference. That being said, zometa should be an easy transition. Yes, it's the one that everyone suggests taking Claritin (or generic loratadine) a couple of days before, day of, and a couple of days afterward. My first infusion I had flu-like symptoms for a couple of days, but things settled down after that. I always battled constipation after the infusion, so took proactive steps on that front. Maybe something to do with the calcium. Regarding slowing down the drip, I asked about this after several folks posted here about it, but my MO said no, that the timing was precise so as to hit a certain concentration in the bloodstream. Since I wasn't having issues, I didn't press.
Brennie, progression news just plain sucks. But it sounds like your MO is on top of things. Good that your family will be with you to talk about next steps. It's amazing what a wonderful support network can do. Sending hugs.
0 -
Bone Mets question— bone only mets diagnosed Dec 2019. Have had palliative rads to thoracic spine and hips. Now left shoulder pain shows mets in clavicle and humerus. This shoulder pain prevents me from using left arm most of the time (I am left handed so this is an inconvenience, for sure)
I had bone scan this week which showed stable mets with some even shrinking.
I am on Ibrance and Letrozole
My question is - since diagnosis, the pain from spine, hip, and shoulder mets have left me mostly home bound due to pain. Will this get better? Is it possible that Ibrance will lessen the pain? (Palliative rads to back helped a bunch so are rads the palliative fix for bone mets??)
1 -
DodgersGirl- I too have bone mets. And mine shows stable on CT and bone scan. I am on Letrozole and Ibrance. I have a lot of aches and pains all over. I also have untreated rheumatoid arthritis (taken off RA meds since the cancer diagnosis). My MO says my pain is probably from the meds more than the arthritis or the mets. Of course, we cannot say "the shoulder pain is arthritis, the hip pain is the meds, the back pain is the cancer". Pain is pain. But just wanted you to know that a side effect of the meds is joint and bone pain. And several that post on here talk about Tin-Man stiffness and body aches.
P.S.-- I have never had rads for the bone pain, so I cannot comment about that.
Hugs.
0 -
I have one bone metastasis to my collarbone that was diagnosed in September 2019. I am on XGEVA, Ibrance and Faslodex. The Ibrance and Faslodex were both started this February. I noticed a pain in a shoulder that I had not had problems with prior to getting diagnosed with stage IV. My pain started while I was only getting Taxol chemotherapy and XGEVA shots. I believe in my case, it is the XGEVA and muscle pain is a listed side effect. Are you on XGEVA or another bone strengthener that could be causing this? Like Candy said, those other drugs also have this side effect. I ordered a Tai Chi DVD for people over 50 to see if that can help with some of this pain and help my flexibility.
0 -
Cowgal— yes, I receive a monthly XGEVA shot. I was also on Anastrozole for 2 years which did a number on my joints. The sore places on my left side correlates to mets seen in recent bone scan.
0 -
Hi Dodgersgirl,
As others have said, the treatments can give us lots of aches and pains, both the anti-estrogens and the bone strengthening meds. However, I have also required radiation treatments to deal with pain related to my bone mets. This seems to be the preferred way to treat the pain (not sure if it’s the only method).
In my case I’ve had three zaps. The first treatment was to my lower back just off the midline to treat severe sciatica that I was experiencing. I was thrilled with a complete response. Next my right hip was treated when I got to the point that I could barely walk. Unfortunately, the response was only partial in this case and I still have issues but still much improved. (It’s humming this week but I have also walked a lot during a week off of work.) Finally, I had my sacrum/lower back treated with definite improvement.
None of the rads treatments have caused any permanent issues but there were definitely side effects to contend with. The hip treatment came with some severe gynaecological irritation - lots of sensitive tissue there - and I threw up after my low back treatment (apparently it nicked my stomach) but overall I’ve been impressed with the results. If the shoulder pain is making it hard to function I would talk to your RO about possible treatment.
0 -
Sandiesservant- thank you for sharing your experiences.
At this point, I expect my MO to mention rads for shoulder. As you mentioned, rads have side effects. Rads to my hips came with SE which gave me diarrhea for weeks and landed me in the hospital for a week. Maybe pain meds can help while I recover from the big D.
0 -
Dodgers - I am only just now starting to function almost like normal after my piddly five rads to pelvis, down to a cane or no walking supports, 18 hour windows on the advil. My left (non cancer related) spinal stenosis has flared recently, though, likely due to increased activity and starting physical therapy to rebuild strength especially in my lower back. I've accepted its just gonna be a painful haul, but every day I do my exercises and walk more is another day stronger. I'm doing things now I couldn't do two or four weeks ago. I'm 14 weeks out from my rads but I had a huge area of inflammation and lesion, on top of an already crappy joint,so not surprised it's taken this long.
But yeah those first few weeks after rads and I was still not functioning and in pain were not fun. Cooking two weeks after and needing to sit down after ten mins because my legs were shaky and I thought I was going to vomit. Wondering if I was ever going to be able to go back to swimming or work. You had three times as many rads and a long hospital stay and dehydration. As much as we hope and want and expect our bodies to bounce back they dont. Just takes time.
It was explained to me that the rads would eliminate the pain and pressure in my si joint, the xgeva would help me grow new bone in the eaten by cancer bits and also make it less possible for Mets to take up residence in the first place. The I/L keeps cancer cells from dividing etc as far as I'm aware. I'm waiting for my scan results next week but I suspect them to be headed in a positive direction.
Mostly I get muscle achy when getting up from a point of rest. I did a lot yesterday and when I finally laid down I ached everywhere.
Do you have a palliative care doctor? Supposedly they help with pain management strategies and prescriptions.
0 -
SondraF- thank you for your story. I hope you continue to see improvements. And I found your story very encouraging.
I can see where XGEVA, Ibrance, rads, pain meds, and time can lead me down a path of improved QOL. I just have to be patient. I expected to progress over time to a place where pain ruled the day but didn’t expect my MBC journey to start at that point. I have to go back to my philosophy on life in general— Cope and Deal.
No palliative doctors in my city. MO or PCP handles that.
Again, thanks for your post
0 -
Hello to all, I so appreciate this site and the different forums. Thanks to everyone for sharing details of your disease, treatments & symptoms. I have extensive bone mets in my thoracic spine and ribs. Recent PET scan showed significant worsening of spine mets so I'm about to switch treatment from Verzenio & Letrozole to Faslodex, rads to spine and not sure what else (awaiting results of a vertebral biopsy); Affinitor was mentioned. Like so many others, pain is dominating my life. Does anyone have any effective pain relief to recommend other than opioids? I don't tolerate those meds and Ibuprofen, Tylenol, topicals & ice just aren't cutting it anymore. I know I need to exercise more and struggle to get myself to move because of the pain. Thanks for any ideas!
0 -
Belll— I have extensive mets to thoracic spine. Rads took the pain down several notches for now.
When I know I am going to up doing lots of stuff or will be on my back for tests, I wear SalonPas lidocaine patch. It helps me for hours. The OTC is 4% lidocaine. There is a prescription strength patch that is 5% lidocaine. So far, my insurance has denied the prescription patches though.
0 -
Belll...this has helped me TREMENDOUSLY with spinal pain! As you can see, you have to get it at a compounding pharmacy, but my insurance paid for it. It’s a 2 part rub. You use the lidocaine last. Maybe ask your dr about at least trying it? I’ll be praying for your relief.
0
