Bone Mets Thread
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@eleanora That's a possibility that had slipped my mind - thank you for the reminder, because I meet the radiation oncologist this Friday, and I can definitely ask about that.
At my last MO appointment, we went over the staging and he ordered a neck MRI for this week (mets on C2 and C3 so he wants more scans). I have no idea if radiation would be something that's being considered for that too - I need to ask about that as well.
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Hi Ladies, I am concerned that my doctor has not started me on Zometa yet. When I started treatment with the verzinio and flasodex she wanted to wait before she added the zometa. In the meantime she encouraged me to go to dentist because of possible side effects from zometa. I am having root canal next week, dentist also confirmed the need to have teeth and gums in good shape as possible (did I tell you all I hate going to dentist lol) Only had 1 cavity filled. My question is am I risking a bone fracture. My oncologist is very methodical and does not rush. I am anxious to start the zometa .All you ladies are on bone strengthen meds. She said even if my teeth were perfect, she would not have started me until feb or march. Again the main reason being she wanted to see how I do on the Verzenio and flasodex before adding 3rd med. But I am anxious to start.
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I was told to go to the dentist also before they started the Zometa and Dentist approved so I started it but he didn’t keep me on it for very long. It was only two or three treatments. I have such low-grade nausea constantly that he stopped that he thought possibly that might be the reason and seems to be so.
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@jen1 I was diagnosed with stomach mets in early 2019 but had a missed diagnosis in the bones from 2013. I asked for a bone biopsy myself, which they did in the middle of 2020. Once the bone biopsy finally said what it had been all that time, they started me on Zometa. I really think it depends on your bone strength. I know someone who had fractures, and that’s how they were diagnosed. I have never had a fracture in ten years.
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jen, it appears you were diagnosed with mets to the bone last month, is that correct? You have begun the verzenio and flasodex already, and that is a good start. This is what is going to keep the cancer from progressing. I think its great your onc wants to see how you tolerate that before adding zometa. I really wouldn’t worry about it. A couple months from diagnosis doesn’t seem that long to wait to begin zometa. Getting the dental work done first seems to be in your best interest.
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Thank you divinemrsm yes I was diagnosed last month with mets to bones.
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Thank you also spookiesmom and kbl also for your feedback
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doodler,
My MO never explained how Zometa can help control bone pain….she just made the statement very early in my treatment, when I started the infusions. Based on my own experience, thankfully I have not had much bone pain and have mets in vertebra, pelvic bone, femur trochanters, ribs, sternum.
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weninwi, similar to you, my oncologist never presented Zometa as something to help with bone pain. I was told it was a bone strengthener. I assume stronger bones would be a better defense against cancer cells. I never really had bone pain, either, from bone metastases.
I wanted to mention that the low level pain I’ve been experiencing from the femoral rod surgery in October has noticeably improved in the past week. I’ve really been babying my leg, still mostly using the walker and only using the cane a small percentage. My hip still gets sore with minimum activity, but there are moments when I feel no pain and my leg has a solid feel. I still have a ways to go, but I can see where weeks ago I was walking with pain trying to convince myself it wasn’t too bad. Wrong! I simply need more rest and time to heal. I was trying to rush it and putting too much presure on myself. It’s frustrating because I just want that “normal” life back, to come and go more freely without giving much thought to it. I have to resist the urge to overdo it now that I can sense improvement. I used to think I was laid back and patient, but I’m learning that’s not the case!
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Glad the SBRT treatment to your skull was successful.
I might be needing to have that done in the near future. Still having diagnostic studies done to evaluate what is actually happening with a small lesion in my skull that has shown some growth.
Did you permanently lose your hair in the area radiated? Not a concern if it results in getting rid of the cancer as long as it does not "kill the bone" as sf-cakes mentioned happened to her.
Did the high dosage leave a "burn" on your skin? I do not heal well from burns. My skin is still pretty red and sore from a burn suffered almost 5 weeks ago.
Did you experience any other side effects?
Thanks for sharing.
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There are some side effects, but totally worth it, as the alternative is much worse. My lesion was 8 mm in the clivus bone, which is in the back of the skull pretty much in line with the tip of your nose, surrounded by such sensitive structures as the optic nerves and the pituitary gland. Very grateful I had no symptoms, which can include double vision and blinding headaches.
The morning after the first session I was very nauseous and was given a Zofran prescription, which I took an hour before radiation and before bed, and was fine. They do radiate from multiple angles. I lost hair in a patch a little larger than a 50 cent piece behind each ear, but it has grown back, albeit a little thinner. I did develop a bad burn after the second session, in a butterfly shape across my nose and cheeks. Although my hair is now white, I was a redhead with green eyes who always wore the palest shade of makeup, so I understand your comment about sensitivity. My wonderful RO (head of the department) went down to the radiation suite and made them cut out the part of the mask that covered that area of my face. Apparently, the radiation was bouncing back against the mask and burning my skin. My throat and esophagus were burned, both by the radiation and severe acid reflux that followed. I also developed double vision and dizziness from the increased skull pressure.
I was prescribed a 30 day course of steroids with a two week taper at the end, and advised to take Prevacid until I finished the steroids. All of the SEs diminished over the 6 weeks (but for the hair, which took about 6 months) and today I have only a faint pink patch on each cheek which looks like mild rosacea.
I hope I haven't frightened you. I don't know where in your skull they will radiate and the area may not be as sensitive as the clivus .
If another skull lesion appeared I would have radiation again without hesitation. I think it's a miracle.
Eleanora
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Eleanora,
Thank you so much for all the details and suggestions. It has given me a lot of things to discuss with my ro.
Provided the PET does not show any other progression, I will have the area (which is in the front of my head) treated. You have not frightened me off! 🙂
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@divinemrsm Are you still taking PT? I have no idea if our situations can even be compared. I had my rod surgery upon initial MBC dx and was in excellent physical shape. I found my PT exercises utterly boring but the best path to get back to exercising, climbing stairs and gardening. That being said, if I were to have the same surgery today, my recovery time would be MUCH greater. And there is no more gardening or exercise in my life and I bought a house without stairs. 😂 You’ve got to know your body and its limits. I hope you continue to steadily improve.
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RK2020 - Just so nice to hear that I'm not the only one who finds PT exercises super boring!
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rk, knowing about your situation has helped me, even if it isn’t quite what I’ve experienced, and I appreciate your insight! I’m not officially doing PT now but do a few of the exercises I was taught, when I remember! Nothing strenuous. I finally started going upstairs to bed at night instead of sleeping on the sofa. Through the day I am fine moving around the first floor. Dh takes me out to eat at least once a week. Earlier this week we took a six-hour round trip to visit my brother, whose oldest son tragically passed away earlier this month from melanoma. I did fine with the drive, and was thankful to see my brother during this difficult time for our family.
I’m gradually able to be more active with the emphasis on “gradual”. I still have a ways to go and have to guard against overdoing it. I can make meals as long are they’re simple, and dh will cook and we get take out some days, too. I’m not driving yet. I know I could but am not going to push it. My plan is to wait to see how my leg feels in two weeks. I don’t see how I’ll be able to tend to my flower beds this year, tho.
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Divine - I am so sorry to hear of your nephew’s passing. Cancer can be so unfair and random and the younger the patient, the more my heart aches for them. For them and for all who loved them. Hugs.
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Oh, @divinemrsm, we're so sorry to hear about the loss of your nephew! Sending love to you and your brother and family during this difficult time.
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rk and mods, thank you for the condolences. My brother is a decade older than I am, and his son, who was my parents’ first grandchild, was in his early 50s. He was a traveling nurse and fabulous photographer. Out of the blue, he was diagnosed with stage iv melanoma in October and died less than three months later. The aggressiveness of the disease was horrifying and unrelenting. It’s hard to process it all.
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Oof, that is quite rapid, @divinemrsm. I think it takes a while to process a metastatic diagnosis, whether it's in ourselves or someone else. It can take years to come to terms with it, and cancer certainly goes at its own pace with no concern for our ability to emotionally process what's coming. Sigh. I'm not sure if it would be helpful for you, but I found that reading various stories on https://modernloss.com was helpful. I was able to read about others' stories of coping with grief and loss, as I processed my own. Grieving is such a personal experience that sometimes it can be hard to find someone who understands our experience in a similar way. In that sense, it can be nice to read different strangers' experiences because sometimes that's the closest that mirrors our own and helps us put words when we have none.
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It's good to hear about healing going on, and boring PT, lol! My tendency is to want to rush things, like can we get the healing over and DONE with, now please? And I know that doesn't work.
Will be headed to the hospital in the dark tomorrow morning, they want me there at 5:45am! Thank you so much for the good wishes, I've read a ton of articles and case studies about the type of surgery I'll be having (thoracic instrumentation and laminectomy) so that helps me to feel better. Looking forward to having this done and being back home in a day or two.
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@sf-cakes Good luck tomorrow. Sending lots of 🙏🙏 your way for a speedy recovery.
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Sfcakes - Good luck again and thanks for denoting the kind of surgery you will be having. I had thought it would be spinal fusion surgery, but looks a bit different. I too have thoracic fractures that can cause pain, so am pretty interested in your situation. Fingers crossed, and know that many of us will be thinking of you.
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moderators, thank you, I appreciate the link on loss. It does help to read about others experience with loss and grief.
sfcakes, sending you all the best as you go for surgery tomorrow. You are brave to read up on it beforehand. I am usually too big of a scaredy cat to do that! Will be thinking of you and hope all goes smoothly.
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Sending you all the best @sf-cakes! We'll be thinking of you.
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Hi everybody, I like to ear some opinion.
I had ribociclib and letrozole for a year and half. Worked really well on my bones, but eventually i had a recurrence on liver and sternum.
I'm on capecitabine now. It is working on my liver and sternum, but my bones metastasis are back active.
Have somebody experienced the same? What is going to be next? My appointment is in a week...i'm so scared...
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Good morning ladies…. First off, good luck sf-cakes! I wish you a smooth surgery and speedy recovery.
I also want to thank all the ladies that talked about their femoral rod surgery. I ended up seeing my ortho onc on the 22nd and he was very concerned that my left hip could break at any time. He was also concerned about the right side, though not as since I didn’t have pain there. He immediately gave me a cane and told me to stay off my legs as much as possible. Then I got a call on Wednesday morning to be in the hospital that evening for surgery on Thursday. It was such a whirlwind! I still don’t think I’ve processed everything. They ended up doing rods to both sides, as he said they would likely have to do the right side eventually. I woke up from surgery I a lot of pain and it took them a bit to manage it. I also had issues with low blood pressure and low oxygen levels that drove my nurses crazy. But I was able to leave the hospital Saturday night. I’m moving around so very slowly with my walker, mostly to the bathroom, my bed, and my chair in the living room. I hate this. My pain isn’t awful but the soreness feels like I’ve done 100s of squats or something. Listening to y’all, I feel like I’ve bitten off more than I can chew. I had asked about recovery times but all I ever got back was that I’d be weight-bearing almost immediately. I mean, that’s true but I’m now wondering how long it’ll take to get back to “normal”.
I hate being uncomfortable. And I hate being a burden. And I have to say, this time in the hospital really got to me. It made me think about life and if I’ve wasting mine. And about what my end may look like. It was definitely depressing for a bit.
Anyway ladies, I hope everyone is doing well and is getting the answers they need. I absolutely appreciate hearing everyone’s stories, they hold so much comfort. Thanks for putting up with my rambling!
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Oh my Katyblu. The last I remember is that you MAY have surgery. What a whirlwind ride you’ve been on. I’m just glad that you got the surgery before anything broke and given the short notice, you didn’t have much time to think about it - less time to potentially worry. I know it was hard for me to be dependent on anyone. And I was in my 50s when I had my surgery. It’s got to be even harder the younger you are. On the upside, I’m hoping your young body works in your favor and heals fast. Keep us updated on your progress.
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@katyblu Wow, what a whirlwind! We wish you a comfortable recovery. Give yourself grace to heal, we hope you feel a little closer to "normal" every day.
The Mods
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