Bone Mets Thread
Comments
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Hi Vilma65,
I was diagnosed with a single met in my left femur March 18. Each of us is unique, so my situation may be very different to yours. But I will share my experience, for you to consider.
I had no symptoms, the met showed up on a pet/ct scan (done because I had back pain). First a biopsy was done. As it was a single met situated primarily in the proximal part of the femur bone marrow, it needed to be verified that it actually was a BC met. Two holes were drilled for sampling. In April 18 it was confirmed that it was a met. MO and the orthopedic surgeon discussed treatment options (surgery / chemo + H/P), and the orthopedic surgeon repeatedly informed me that there was no risk of fracture. To cut a long story short, I started chemo and H/P, and the otherwise planned surgery: partial femur/hip replacement (not rod) was canceilled.
Mid May 18 my femur fractured spontaneously between the biopsy holes, - this was an extremely bad experience - very painful. The originally planned surgery was performed and I am steadily recovering, - I am not in pain, but a lot of training is required, 10 weeks post op I walk with a cane, but hope to be able to walk without soon. I asked the operating orthopedic surgeon how this could happen, I had repeatedly asked about the risk of fracture and been reassured that there was no risk. He said that they are extremely bad at predicting the risk (this I did not know).
Personally, I would then have preferred the planned surgery, I am sure my recovery would have been easier, and I could have avoided a very bad and serious situation when my femur fractured.
Your situation is different, - my advise would be to ask all the questions you need to, for you to feel confident with your decision. Unfortunately, I was not provided with a choice - the orthopedic surgeon made this decision, my impression was that the MO wanted the planned surgery, but couldn't overrule the surgeon. When I see the surgeon for a check up in 4 weeks time I will question their assessment of risk fracture again. Not that I can change what happened to me, but there will be a next patient, that should be correctly informed about the uncertainties surrounding fracture risk
Best wishes, Meja
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Congratulations iWrite! Grandparenting is the best. also gives more outlets for the sewing!
So sorry to hear about Robin, Clair and Babs! Also haven't seen anything from leapfrog lately. Worried.
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Thank you Pat and Kaption,
I’ve been worried since it seems this summer we are all having our issues. I’ve had 4 units of blood, a port just put in, scans showing progression and this chemo is really getting to me. At least I’ve found a much more suitable place for my treatment and love these new docs that are willing to deal with my Doc at Dana Farber.
Thanks again,
Hugs Anita
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Hi I had a nail inserted in my right femur, you will need to be on crutches for a few weeks, and to have rehab, I still have pain but thats from the tumor in my leg not the nail, it's a slow recovery but worth it to know your leg won't break. Take all the pain meds they offer you, you will need them. I wasn't given a choice as my leg was close to being eaten through by the tumor, I think it's best not to wait for something bad to happen and have it done.
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Hi KittyKat, thank you for sharing your experience with this, I'm starting to think that the best thing will be to have the surgery. I'm not an anxious person but just knowing that it can break I'm becoming aware and afraid of each step that I take. Could you go up and down the stairs after the surgery? I have a few stairs to my house and many to get to my bedroom
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Hi Anita,
Sorry to hear you are going through all that. It does seem that many of us are having issues. I had radiation to my hip yesterday to deal with pain. Must say, today the cure seems worse than the disease. Fortunately I know this will pass.
Hang in there. We need to see you back to top form so that you can post more of your breathtaking photos from Africa. Having recently returned from a “city” vacation, I realize that nature trips are the ones that make my heart flutter. It was lovely but... setting my sights on Costa Rica next. 😉
Take good care of yourself. Pat
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Congrats lwrite. Nothing like a grandbaby in your arms. Yesterday my tired 1 year old climbed up in my lap and cuddled in to nap. It was heaven since I can’t pick him up anymore.
So many of you are having a tough time. Sending hugs to all. Mair
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Vilma, I needed a rod in my femur and a total hip replacement at the same time back in 2014. I had been experiencing increasing pain in my right leg shortly after I was re-dx'd with mbc, and had been led to believe by my local onc that it was simply expected pain due to bone mets. My UCLA onc, OTOH, did have me scheduled for an MRI, but 3 days before that was to happen, my leg totally gave way and I was in the most excruciating pain I've ever been in -- couldn't move, literally screaming and crying at the same time. I had no idea I had fractures in both my femur (at the very head) and pelvis until I got to the ER. So my best advice to you is, find a highly rated ortho doc you absolutely trust, and get it taken care of before that happens to you. Also, my recovery wasn't nearly as bad as some have shared here. I used a walker for a few days... then onto a cane... and within 3 mos. was back to most normal activities. I think I was cleared to do anything I wanted to @ 6 mos., and you'd never be able to tell now that I'd gone through such an ordeal. But I've also always been athletic, I had an excellent ortho surgeon (he'd worked on my hubby in the past), and I was inspired by a friend who had a similar break due to a hiking accident and I had seen how fast she recovered, so that was the image I held onto.
Iwrite, congrats on the grandbaby! Not sure if you've shared any photos as I'm not here much these days, but hope you will.
And prayers Babs is okay, and hugs to everyone else.
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Happy Sunday...here is the best photo to date of little Juniper. Swimming in her newborn outfit so grandma visited Carters to find something smaller
I’ll see her again tomorrow and try to get one with her eyes open. 
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Beautiful, Kathryn!!! And love her name.
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How special. And I love that name too.
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Iwrite, thanks for sharing the photo of your beautiful granddaughter! She made me smile.
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what a little beauty xx
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Thank you ladies! Beyond the joy that comes wth having a new grandchild, (and seeing a daughter’s dream come true), I want to share this with all our new MBC friends, who are thinking of all the life events doctors and Google said you will miss due to this Dx. Not necessarily true.
Happy days and sweet milestones are coming, and you’ll be here to enjoy many of them.
I was so scared for six months, and finally decided that was no way to live. Now, I fill up life with family, friends, work, projectsand adventures. (Plus some medical stuff including regularly scheduled scanxiety.) This baby is a miracle...so glad I made it past my “expiration date” so we could meet!
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Iwrite, she is beautiful!!
My goal is to live long enough to be a Nana, my daughters are 19 and 16 so hopefully I have a while to go.
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dlb823, Thank you for sharing your experience, hearing these stories is super helpful. I'm starting to make peace with the idea of surgery and less scared of it. How soon into your recovery you were able to go up and down the stairs? I need to use stairs to go in and out of my house
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vilma65, I think by what I’ve read from the other ladies that these surgeries are very individual, I had the proximal femur replacement which included the ball joint. It goes down about 10 inches. I was told by my dr no weight bearing at all for the first 6 weeks. The next 6 weeks was 20% weight on it. So after twelve weeks I was allowed to be weight bearing but only with a walker. There was no cheating because it hurt! He X-rayed each visit and there were some minor complications so I did not want to add to the problems. Ok as far as steps go, I only had 3 to get up to get inside my house and we practiced at the hospital. They had me back up the steps. With the walker! It was horrible! Didn’t go as planned! I would advise lots and lots of practice and 100% confidence in your plan before taking it on. What would be great is if Pt would meet you at your house when your coming home! God Bless you with strength and wisdom!0
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Vilma, we have a ranch style home, so stairs were never an issue for me. But one thing I learned that might be helpful... my local hospital (where I had my surgery) tried to get me into an immediate rehab program connected to the hospital, but my insurance denied it. Since you have stairs, you might want to see if your insurance will pre-approve immediate rehab, where you wouldn't have to navigate stairs for a week or two. This could also give you a jumpstart on mobility. Depending on the entrance to your home, a temporary wheelchair type ramp might be an alternate solution. But definitely a need to discuss with your ortho surgeon and insurance.
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Kathryn-She's beautiful!!! I love being a Nana. I have 3. 8 1/2 yr old granddaughter, and 2 grandsons (brothers) 5 1/2 and 7. I'm sure there will be more someday, and I hope that I get to see all of them.
Well, my breast oncologist at DF in Boston, gave me 3 totally different chemos than my local oncologist gave me. Navelbine (I get the Navy bean, Larkin, LOL), CMF, and a pill (I know I wrote down incorrectly, I can't find it) Abamcyclibe (??). I want to do CMF, once every 3 weeks, and the side effects aren't too bad (she said she couldn't believe I lasted over a year on Taxotere because it's so tough). I called my oncologist's office, the next morning and left a message on the nurse's line for the dr to call back. I left my husband's cell phone number on the machine. We were driving to Rochester NY to see our son (7 hr drive). We never heard from the dr. My husband decides to check his emails, when we get there (around 7) and sees that the dr left 2 messages on our home voicemail. She said she has talked to the DF oncologist, and she is on vacation this week, and I could talk to her when she gets back. I'm suppose to start the chemo on Friday. I called the office again this morning, and they haven't called back yet (I'm home now!).
Vilma-good luck!
Lynne
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Need advise--
I have been using Xgeva injections monthly for the first year of my diagnosis. My new MO said she will change my dosage to every 3 months at the year anniversary ( Nov. I think ). Is this normal?? I don't mind the monthly injection and my insurance has covered all of them. I am just afraid that if we lower the dose to quarterly I could have fractures more easily, I have never had a fracture yet. My bone mets is in cervical, thorasic, and lumbar spine, and I think the pelvis. Thoughts....
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Hi candy,
I got Zometa (also a bone builder) infusions, once a month for 2 years, then once every 3 months since. I was told that if I continued on the once a month cycle, it could damage my jaw bone. I also have to stop it for 3 months if I need crowns or any dental work besides fillings and cleanings.
Lynne
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Candy, that is the normal protocol for Xgeva
I’ve been on it since 2014. No problems.
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Buzzed my head today! I forgot how much cooler it is with no hair! Glad it’s done, I was shedding everywhere!!!
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Gracie, I'm very proud of you. My thoughts are with you. Maybe that's what I need down here in Florida.
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So I see this Oncologist that is super duper good and my Primary has him on speed dial, LOL. He is just sincere and intelligent. I like him and trust him. He keeps telling me I should go get a second opinion from "Moffitt" the cancer center down here. I keep putting it off and he goes and calls them to call me!!! He says he wants me to be reassured that all is being done in my case.
On the positive side I feel like I've been "sucked" into this family of doctors (LOL), primary, oncologist and OBgyn, in a good way and they all treat me very well. I don't think I could find any finer docs anywhere. I think I am blessed with these doctors.
On the neg side, this appt with this cancer center has really hit me with " OMG! I've got cancer!" and got me sortof depressed. I have not yet broken down and cried hysterically, but this 2nd opinion appt. has me near it. I have not changed my life, I feel no different, the only change in my life is all these appointments!!!!! I still (truly) dig holes, build fences and chicken pens, carry 30 lb bags of feed. You would not believe my outdoor backyard life, LOL. So maybe that's postponing the hysterical breakdown?
Maybe these positive-negative swings are normal for the abnormal?
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princess...I think it’s perfectly normal to cry. It’s a grief process. We grieve the life we had planned before cancer. Don’t feel bad about that. I think all of us have gone through that. On your doctors...I think it’s very important that you like and trust your dr.’s!
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Chef47, that is a long recovery process, really stresses me out that after I managed to get in, i will be practically trapped in the house ): . At least it will be an opportunity to finally scan all my pictures
. I want to prepare some digital albums for my kids and I never seem to have the time to do it. (still working full time). Dlb, I live in Canada, I do have an extended insurance but it doen't seem to cover any rehabilitation services other than some physiotherapy. The public health service does cover rehabilitation centres in certain cases, not sure if this kind of surgery would apply. I wonder if there are any Canadian that have some insight into this. I would love to get some rehabilitation before coming home, stairs and shower will be a great challenge.
Thank you Lynne and good luck with your new chemo!
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Princess- I did a lot of crying in the beginning. I think it’s normal and Gracie is right about the grieving process.
It was a jolt to drive into a cancer center for the first time and know it was for my cancer. It gets better and you appear to have a good team.
Hang in there
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Princess- I wager we’ve all shed tears. It’s normal and Gracie is right about the grieving process.
It gets better and you appear to have a good team.Hope things go well for you whatever you decide!
Thinking of you Vilma and Lynne. Glad to hear there are new options and treatments that work.
Gracie- hope having a “cool head” makes the weather more enjoyable
. Remember sunscreen...Last picture...I promise.
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Iwrite, beautiful baby!!! What a blessing for you! Congratulations!!
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