Bone Mets Thread
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I hope you will be able to get appeoved the best medicines for you soon.
I also had extensive bone mets with 3 collapsed vertebrae. So after a long period of recovering with mild exercise, i started with a lot of exercises and run, and it helped a lot. I increased slowly and listen at my body, NEVER overdue! Also my onco-orthopedic told me to ABSOLUTLY avoid any torsion of my column with weight in my hands.
As other people wrote before, the constant exercises really helped, as at a point i wasn't able to do anything anymore.
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I also suffer from fatigue all my body, and because of the mets in my tibia , vertebrae, heel and near the knee, I have become very afraid of walking,
I also finished five sessions of radiation therapy, but still so afraid to do any exercise
May I ask what kind of exercises I can do without harming my vertebrae and legs?0 -
@norah2024 It's best to get some professional advice on that. I'd ask my oncologist about safety and perhaps to prescribe physical therapy through your cancer center. My oncologist gave me the ok to exercise as long as it didn't cause pain.
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Yes you should definitely have a professional advise!
Also the more common kind of breast bone metastasisare make your bone very weak (from the web: "Osteolytic metastases", develop when metastatic cancer cells break down too much of the bone, making it very weak. Holes may develop in the bones as the bone is destroyed).
For this reason, and the pain, I started exercising from standing up only when my meds started to work, and my bones got dense again. Before I would do a lot of soft movement with arms and legs from a laying down position.
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@norah2024, I agree wholeheartedly with the others, you should definitely get professional advice about what exercise program would best fit your circumstances. There are so many things to be considered, such as the type of mets you have (mine are all sclerotic), location of mets and bone mineral density, not to forget the immune system, especially if you are intending to go to a gym. My onc only allowed me to go to a gym when my blood work showed I actually had an immune system. Prior to that I started doing chair aerobics and worked my way up to normal aerobics at home using a Youtube site. As both @tougholdcrow and @amel_83 indicated - always listen to your body and do not overdo things. In your pocket with support.
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@amel_83 , @tougholdcrow, @malleemiss251
Thank you for your reply
I am new here,
after being diagnosed with mets to the bone on 7/2024 the oncologist suggested a treatment plan.
That will be kisqali/faslodex/xgeva combination for three cycles (28 days for each cycle ), during that i have to do blood test/markers/ECG also every 28 days.
After these 3 cycles (I will finish the third cycle on 4 November) The oncology propose to go for total body PET CT scan (head to toe)
I want to ask someone who has had the same experience, does the treatment have to go this way? I mean what is the meaning of 3 cycle ? And is it necessary to have pet scan after that? Is it possible to postpone the pet ct scan to next year ? (At that time I will get the insurance again.).
At this particular time, these questions have become necessary for me because I am no longer covered by insurance. That's why I care so much about what is really necessary.
As far as I know, some people stay on treatment for years. But I don't understand why we continue with treatment if the cancer has stopped or been controlled?
Thank you all
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Hi
The meaning of the 3 cycles is that in 1 or 2 cycles you can't see much difference on PET scan, as the medicine take a while to work. But it is better not to wait too long either, so if the med doesn't work at all, you can switch it for another one. I actually got my PET scan after 4 cycles.
About the need of taking lifetime medicines, unfortunately it is a sad reality of stage V cancer. As without medicines the cancer will start to grow again. At this stage the therapies dont eliminate cancer cells complitely, so if you quite the meds, the cancer cells will eventually start to grow again.
There is been very few cases where people could of actually stop the therapy, but it is very rare unfortunately...
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@norah2024 Different oncologists have different modes, I guess. Mine only uses CT and bone scans, although my former oncologist was a fan of PET scans. It seems standard to have scans every three-four months for a while to make sure that your cancer is stable. Then you might go for scans every 6 months, depending on your condition. It's standard to have tumor markers done every month. Usually, the ECGs at the beginning are to make sure that Kisqali isn't causing any heart problems. Cancer cells lurk in the body, so you can never completely get rid of them. You stay permanently on the meds to make sure they don't rear their ugly heads!
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@norah2024, I agree with @amel_83 and @tougholdcrow, every oncologist has a different approach. Mine only uses PET scans on stage iv patients if she wants to check if they are NED (no evidence of disease). With me, a full bone scan and CT scan are done regularly. Different scans are also better at picking up different issues. CT scans are apparently the best for picking up and looking at sclerotic mets and the bone scan picks up where there is bone activity happening. My tumour markers are also done regularly .The heart checks are extremely important when taking Kisqali.
The first few months can be difficult, when you are negotiating so many medical appointments and trying to get your head around what is happening. Take the time to be kind to yourself, listen to your body and try to stay active. In your pocket with support.
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@norah2024 I’m really sorry you’re here and have to navigate the new treatment plan.
I’m on the same treatment plan but I also take Zoladex every 28 days. I started my hormonal treatment first this January , the surgery after 1 week, then Kisqali. Which meant that I was 1 cycle ahead with hormonal therapy when I started Kisqali. I did my first PET/CT after 3 cycles of hormonal treatment and 2 Kisqali to make sure that it’s working, and that I’m not taking it without benefit. The scan showed regression, so I continued, did another PET/CT after 3 month, it showed almost complete remission so I did my last, after 4 months.
I believe for stage IV, you can’t get too long of intervals between scans…my oncologist said 6 months max. My tumor markers never indicate anything, they always are in normal range, so I can’t count on them.
The ECG is also absolutely necessary with Kisqali because it can cause heart problems. Which happened with me and I had to lower the dose.
Good luck with this treatment protocol, it has done wonders to me ❤️
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Norah-If you explain your insurance situation, your oncologist might be willing to delay the next scan until January. Usually there are other indications if a treatment is working, such as reduced pain.
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Ladies, I’m doing terrible. My back is painful. I have an onc appt in the morning to discuss iv chemo and I hope it can be started asap. It appears there are cancer cells in the spinal fluid. I cannot sleep, even with help from opiods. I have a lot of anxiety. I feel that my time after living with mbc for 14 years may be nearing an end. I can’t take too many more nights like this.
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@divinemrsm I am really sorry you're in so much pain <3 I hope this difficult night passes and your onc finds a treatment and pain medication that works for you, to live many more good and happy years.
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We're so sorry you're going through this, @divinemrsm. Please know that we’re all here for you, and you're not alone in facing this. We hope your appointment brings you a clear plan and some relief soon. Sending you strength and positive thoughts. 💕
The Mods
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So sorry @divinemrsm x
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Much love to you, @divinemrsm
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Camille,
My thoughts are with you and I hope you get some pain relief very soon. 💗
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@amel_83 @tougholdcrow @malleemiss251 @radiation_cinderella
I really appreciate you clarifying this.
This is how my oncologist explained to me, he is really an excellent doctor.
But because I am feeling frustrated with my “narcissistic and emotional vampire husband “constant questioning, especially when it comes to things like test effectiveness or medication duration.
It made me feel confused,anxious , in searching for similar cases to my own just to convince him.
However, while this may occupy him for a while, the underlying issue of him questioning the treatment may not go away that easy.0 -
@norah2024 - Sorry your DH is causing you such anxiety. Maybe he would consider joining the Caregiver group that meets every other Tuesday. My husband has been going. He finds it to be very helpful not only for the camaraderie but also to hear from others (mostly spouses but other caregivers too) what their wives are experiencing from the treatments and side effects.
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@norah2024 Yes, @going2beatthis has very good advice if your husband is willing. This terrible news is really stressful for our spouses, too. It seems that your spouse is very interested in what is happening to you, and that is a good thing. However, it's your body and your oncologist is the expert with years of training. You can always get a second opinion to confirm what your oncologist is recommending. That may end the second guessing.
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Divine - Will be thinking of you especially today. I am so sorry for the troubles you have found yourself in and am hoping with all my heart that there is a solution. Hugs and good wishes!
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@divinemrsm I am so sorry you are in pain and that you have this Pls let us know what your oncologist says and I hope you start IV chemo asap…. today! Sending you healing energy and prayers.
@norah2024 I am sorry about your husband undermining your confidence in both your care and the treatment . That is a lot to deal with - have you had marital counseling about this ? My business partner has a narcissist husband and I know it is or can be very challenging .1 -
Dear @divinemrsm -I hate hearing this. So sorry you have been in so much pain and feeling so much anxiety. I hope that the chemo will knock this back. There seem to be many new options springing up in terms of treatment. I hope that one will work for you so that you can have many more happy and peaceful years of life.
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@divinemrsm know I am in your pocket for your appointment, and sending you so much love and support. Please let us know how your appointment goes.
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@divinemrsm, I am so sorry that you are in pain (not only physical but also the worry and stress it brings with it) and hope that you begin chemo very soon. In your pocket with support and a gentle virtual hug.
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@divinemrsm,
I so regret your state of health now. Don't throw in the towel. This may be a step-back, but it may not be as bad as you are thinking. Keep on striving. Remember how far you have come.
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@divinemrsm, I am so sorry about what you're going through. Sending healing thoughts and support to you.
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@divinemrsm I'm not here often but saw your message. I truly hope chemo can start soon for you and that you'll find relief. You've been such a source of support and insight on these boards and we are all thinking of you. Wishing you a lot of comfort.
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Divine, I pray that the chemo is prescribed and kics in quickly. You, sweet lady, have supported and comforted so many of us, me included. I hope that you can feel the love we have for you and you get back on the right track asap. Much love
Laurel
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