Bone Mets Thread
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@sunshine99 I'm glad to hear your doctor pushed your insurance until they approved. Wishing you the BEST possible outcome and few side effects. I’d ask for NO side effects but since it’s your esophagus being treated, that may be too big of an ask. Hugs.
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Just a quick update y’all, I am in a lot more pain. Walking hurts, and god forbid if I move too quickly or in the wrong direction! Thank god for this ortho onc appointment on Monday. I started rads today for my left rib, went pretty smoothly. Mostly I’m just sick of feeling crappy. I think I’m going to call my palliative care team tomorrow to talk about pain meds. I can’t be bed bound if I need to go to rads every day. Also, I currently see a psychiatrist for my anxiety/depression meds and my soon-to-be adderall. And I see a cancer psychologist once a month. But I think I need to see a therapist or something. I just don’t know how to find one near me that’s good.
Anywho, I hope everyone else is doing well!
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Katyblu I’m so sorry. Rads really helped my hip/femur pain. I hope you get some relief.
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Thank you sunshine! I’m really hoping rads helps my rib pain. I’m likely going to need surgery on my left hip, so the unknown scares me. And as I am preparing to medically retire from the Army, this may hold things up a bit. I’m not mad about that though! It just causes more paperwork.
I called ortho onc this morning to see if I can come in tomorrow and am waiting to hear back. If not, I’ll just take it easy this weekend. My problem is I’m clumsy so I keep doing things that jar my hip 😂 It’s like when you try to be quiet for someone and drop everything!
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Katyblu, I’m a couple years older than you but have similar bone pains and had a femoral rod done last year. Using aids like walking sticks, shower seat etc really helped me (but I was very self conscious at first). I’m doing much better now, my pain has reduced a lot.
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Fingers crossed that you have an appointment today with the Ortho oncologist and that he has some meds to recommend. I have bone pain from arthritis which is made worse by the anti estrogen meds. My doctor prescribed celebrex, which helps. I also recommend a handicapped placard for your car.
Fingers and toes crossed for the success of your radiation. Please keep us posted. Saw my MO on Wednesday, and I am stable but still asked about possible next treatments. She mentioned Truqap and was very upbeat about it. She also said that several other meds were approved late last year and she felt very positive about having an expanded arsenal.
Hope everyone has as good a weekend as possible.
Eleanora
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Sunshine, I’m with rk in wishing you the best possible outcome with your rads.
Katyblu, you are going through so much at such a young age, but your determination to advocate for yourself shines through your posts. Rooting for you!
Margesimpson, I had femoral rod surgery in October due to an impending break caused by a cancerous lesion. I was recovering well but six weeks after surgery, I had five rounds of radiation to the leg and it apparently inflamed the area causing a set back in how well I was doing. My surgeon told me to dial back my activity which I have, but I seem to have reached a plateau where the ache and soreness is about the same every day and not getting better. I thought I’d feel more improvement by now. I would love to hear more about your surgery and recovery timeline if you would care to discuss it.Eleanora, your advice to get a handicap placard for the car is a good one. Dh happened to think about that a couple weeks ago when I was at the pulmonologist and asked about it. We were instructed to print up an online form, took it back to the doctor who filled out the required info and dh took it to the DMV and got the placard for $5. It’s making getting around a lot less of a chore.
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Oof, the recovery was tough! I think at the start the pain meds mask a lot. So I’m about a year out and I’m this week walking down stairs normally (but carefully). I still don’t go on my knees or squat. I was probably off the walking stick /crutches after 5 months completely (but didn’t need them all the time). The toilet seat and shower seat about the same - I couldn’t wash my feet properly standing and my toilet seat was too low to bend comfortably.
I don’t think my gait is “normal”. It takes a few steps for my legs to warm up and walk properly when I stand but when I think back to the first 6 months I can’t believe how far I have come! Someone must have told me the recovery would be 3 months because I counted down and was disappointed when I realised I wasn’t back to normal.
i also had radiation and can’t have any more on my hips. The denosumab injections have really helped according to my last scan to see if my other leg needed a rod.
Tonight I’m lying here with a deep ache in both hips but I haven’t had pain killers- I’m not sure they stop the pain and my pain isn’t constant, sometimes it just feels heavy or it shifts to another spot.
if you have any questions just ask!
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Reading along and thinking of you all, grateful that we can share our experiences here with radiation, surgery, recovery, fears, etc.
I'll be having surgery on my spine (gulp) on the 29th - my T9 vertebrae (where we first found mets, had 2 sessions of SBRT radiation that killed the cancer) fractured about a year ago - at first the fracture was very mild and docs thought it would heal on its own. Five months later more pain, had a vertebroplasty procedure that went well, helped a lot, but then the pain returned, and scans showed the fracture hadn't healed at all and is now severely compressed. Surgeon believes the bone is dead due to cancer and subsequent radiation.
So the surgery will entail inserting little rod and screws into adjacent vertebrae to keep the spine stable, and removing some bits of the T9. Surgeon actually said, "this isn't that big of a surgery" and I started laughing. It will be done laparoscopically, so I think that's what he meant.
I've read studies and heard here that mets to the bone are the "best" kind of mets?? Um, this really doesn't feel like the best, you know? All mets suck, no matter where they are.
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I started to type a brilliant response, got distracted by a text message, then forgot what I was going to say. Sigh…
Finished rads yesterday. Was late to my appointment since some guy decided to park completely blocking our driveway. Had to call parking enforcement and they towed him. He came back later looking for his car. Said he didn't realize he had blocked our driveway. Seriously??? He then proceeded to get into a Mercedes parked in front of the house next door and drive away. Very strange.
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Marge, thanks for telling more of your surgery experience. I did not need pain meds for long, and currently take 8-hour Tylenol (allergic to Aleve). It helps to a degree. I’m 3 months out from surgery. I am still mostly using a walker but use the cane a little bit here and there. I don’t mind if healing takes more time if that’s normal for some people. I just worry that I should be further along than I am. Some days my leg feels pretty good and then it starts to feels like crap again. Your comments on how your recovery has gone really helps me.
sfcakes, I hope your upcoming surgery helps relieve your pain. Interesting to hear the surgeon seem to downplay it. Perhaps compared to other type surgeries he performs, this is more routine. But for you, the patient, it is more than routine! I wish you the very best outcome!
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Divinemrsm- happy to share, I wish I knew my recovery was normal at the time! It was definitely after 6 months I felt like I was on the right track and I still get pain from the tumours and I worry about my hips.
sfcskes - I can imagine how you’re feeling. I’ve had a few breaks in my vertebrae and I’m very hopeful I don’t need your surgery (or any more surgery actually). Anything spine related worries me! The doctors are always so casual about it! My dr says that bone surgeons love their job!
sunshine99 hopefully the relief comes quickly, I’ve had very fast improvements in the past.
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Thank you everyone for sharing their experience! I always read everything and make a treasure of it.
I also had 3 collapsed vertebrae (one almost disappeard, one collapsed only on one side, the other is half the height), 4 cm less in stature, and now, after 1 and half year and one year of bone negative PET, I still have pain on and off...
I try to stay away from painkiller, but there is just some weeks that it is impossibile. Also I read antiinflammatory can some how help fighting cancer. So at need I have some ibuprofene or if i have too much pain the slow release diclofenac. I also lay down every day 2 hours in the middle of the day, othrrwise I don't arrive well to the evening.
Best wishes everyone!!
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Sfcakes - Just want to wish you all the luck in the world with your upcoming surgery!
Marge - I totally agree with you about the fear and anxiety over everything spinal. I've had a couple of fractures and looked into the same surgery Sfcakes is getting. The Dr and I decided it's not for me at this point but could be down the road. All the doctors I've dealt with about spinal matters do seem to be real casual about it like you said. Maybe it's because they're trained to be that way.
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marge, I was wondering how it came to be that you needed the femoral rod. Did the bone break, and if so, what was the cause? I had pain in my leg and could not bear weight on it and xrays/scans showed an impending fracture, in other words, a break bound to happen if no preventative action was taken. The cause was due to a cancerous lesion in that area.
Amel, it’s great you take a mid-day break. I think it is some of the best kind of medicine. I don’t nap every day, but when I feel I need to, I do.
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divinemrsm i had a sore back and couldn’t lift my leg enough to climb stairs so eventually (long story) had an mri and I had some breaks and acompression fracture in my spine (the nerve was compressed which is why my leg was hard to lift I think) so they kept going with the mri to include my legs and apparently both had large tumours and one leg looked like it was going to break soon and the other one looked like it would break later so I wasn’t allowed to walk or leave the hospital until they did the first leg. It was a shock - unfortunately my entire liver was covered and that is the real concern, with a poor prognosis.
sfcskes- please keep us posted about your surgery, it sounds like a few of us might need it one day. Good luck
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Now I'm feeling doomed to spinal issues. It's been a scarry ride so far. Hysterectomy at 27 I wasn't good about taking my estrogen or calcium. BC 2008 then letrezole 4 yrs. Osteopenia dx, of course.
2017 MBC more letrezole and faslodex and xgeva for 4 yrs. What's next?
I'm wondering of those with cancer in spine or fractures what is your bone healthcare history.
Did you take Calcium at menopause? Or Fosamax or prolia or ?
Since 2017 I skipped the calcium cause I drink lots o milk. But also added 5000 units vitamin D plus K, plus magnesium. Exercise is the Best you can DO for your body PERIOD. I'm not the best. Stopped xgeva do to jaw pain tho I needed root canals. It was Scarry. I EAT kind of healthy. Still too much sugar.
Can this really help to prevent complications? MO said strong bones will keep cancer out. I don't know of course. I also heard him say the xgeva has been proven to stop the cancer from attaching to now slippery bone cells. I think they make stuff up. It's even worse when Dr's don't agree.
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hi, anybody had a spinal tap? Doctors think I had a seizures, they did ann mri and found a an abnormal in my left brain membrane, between a skull and brain. It’s might be from trauma or met, to rule out met nuero wants to do a spinal tap. I couldn’t speak and I slur, and numbness on my right face and arm for 25 minutes. Everything went back to normal in 45 minutes.
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@gailmary, I am de novo iv - straight to the bones even though I have very strong bones according to DEXA scan I had about 10 weeks ago. Unexpectedly and very surprisingly cos I basically don't go out into sunlight unless covered up - no I am not a vampire, lol - and I have a dairy allergy which really limits the amount of dairy I can have. I am allergic to the caseins rather than lactose - so lactose-free doesn't help. I wasn't taking vitamin D or calcium supplements and covid shut down my gym and I didn't return, so I am a definite backslider on exercise. It took the dentist 40 minutes to remove one tooth cos of the hardness of my jaw. I think we are all different and our cancers behave differently for each of us. I try to take one day at a time but must admit this disease is teaching me stuff about me and my body that I previously had no idea of.
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marge, thank you; I so appreciate your explaining your experience! Did you end up having surgery on just the one leg? My gosh, you’ve been through a lot!
Gail, I think all we can do is what we think best, but there are no guarantees that any of it will work. Loke malleemiss says above, something may work for one person but not the next. The proverbial crap shoot. I have been getting a Zometa iv ( a bone strengthener) xeveral times a year for over a decade. But studies indicate it may also cause brittle bones. I had an issue with my femur, but was it from Zometa or a cancerous lesion, or both? Medical experts don’t always agree.
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gailmary,
Dairy has always been part of my diet. I used calcium supplements and took a low dose oral Fosamax (non therapeutic) for about 3 years after menopause. Regardless, I had osteopenia when I was diagnosed with early stage breast cancer.
I take Vit K2 (menaquinone-7) 100 mcg daily along with Vit D 5000 iu. I take both as a small sub-lingual tablet to avoid any potential GI absorption problems. The brand is Superior Source on Amazon. Vit K2 is very different from the other Vit K found in dark leafy greens. K2 is found in some cheeses like Brie and Gouda, in grass-feed daily products, and a traditional Japanese food called Nato. Vit K2 helps to direct calcium into bones and teeth where it belongs rather than into the blood vessels where it can contribute to plaque formation.
I have mets in several vertebrae and both femurs, and so far no fractures or impending fractures. When I was diagnosed with Stage 4, I started Zometa infusions every 3-4 months and after 3 years my oncologist increased the interval to every 6 months due to the risk of jaw bone necrosis and atypical femur fracture. My oncologist said Zometa helps to control bone pain, but she didn't explain the mechanism for this.
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students and spinal taps sound scary but I guess everyone needs to start somewhere!!
I don’t have dairy but my bones tested strong 6 months before my bone Mets were found and I wasn’t menopausal before my first diagnosis (38) but I am now because of the medication. I really think my general health declined after menopause.
i have the bone needle each month (in Australia we call it donesumab) and that helped enough that I didn’t need the other leg done, they’re just monitoring now- to be honest they would really have to convince me it needs doing. I’ll look up zometa because if it helps with pain I’ll look into it.
Weninwe- going to ask my onc about the bone needle, I had heard about increase fractures and I don’t want anymore so I don’t want to stay on it too long - did you start monthly and drop to 3/4 months?
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denosumab is the correct spelling sorry! It looks similar to zometa.
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marge, so glad you didn’t have to have the other leg done.
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margesimpson,
I don't know what "bone needle" is. I'm on Zometa, an infusion bisphosphate aka Zoledronic acid. The nurses who give it refer to it as "bone glue". I started on an every 3 month schedule (never every month) and after 3 years am now on every 6 month schedule.
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Weninwe- Yeah I meant your zometa, I googled it and my needle is called prolia or xgeva in the US.
devinemrsm- when I was told they wouldn’t do the other leg I felt genuine relief!
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@weninwi I'll be interested in looking for more information on the zometa (zoledronic acid) - it will be part of my medications (an infusion once per 3 months). I'm interested in whether it will help with bone pain.
I've got some mets on the right side of my skull, and have had some shooting pains happening for a few minutes at a time, a couple of times a day, for the past several weeks. Not really a good sign of things to come, but if there's a chance that zometa gives some relief for a time, that would be wonderful.
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