Bone Mets Thread
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I am thinking it’s a combination of the drugs I am on and the skull Mets
Bigpeaches it feels like that to me too I have a lot of skull Mets so probably why I am losing so much and yes definitely need a hat or maybe some bandanas for summer
Cyathea and Star17 I am not on same drugs but have just learned of a few woman that got hair loss from ones I am on
So it does seem the combination of drugs and skull Mets is going to make me bald soon
I remember thinking at least I won’t lose my hair again as I am not on chemo but turns out I will anyways soooo frustrating
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Beth1965 - I was going to suggest it may be the combo of drugs you are on. My hair is progressively thinning, on the crown and on the top,and I believe it's the combo of Faslodex and Verzenio. I am on Xgeva for bone mets but I don't think that plays as much of a role. It's definitely one of the harder struggles I have with stage IV.
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Hi All, after a very tough week I’m still standing! Rads to the biggest met in my spine, nicked my stomach so a couple of nausea days plus trying to manage referred pain from the met. Never had rads before so it was an experience that the procedureitself is painless but you MUST keep on top of the pain meds because it gets worse before better. Read this here before, but you all know what it’s like. Sometimes you have to experience it.
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karen, I'm glad you're still standing! It's tough to stay ahead of the pain, right?
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Karen, I feel your pain, literally. I’ve had several rounds of radiation for spine mets (one hip) and underestimated the impact of rads close to the stomach once. Went back to work and then suddenly thought, I’m going to be sick! I managed to make it to the parking garage to go home, thankfully had the presence of mind to take bags with me, tossed my cookies and split!
I just had the first session of five to C7, T1 and T2. I’ve been dealing with significant shoulder pain and numbness in my right arm for about seven weeks. At times the pain was all consuming and made it impossible to sleep. It was a bit of trial and error finding pain meds that were effective but a combo of gabapentin and hydromorphone did the trick. (Note, to self, morphine is a total no go for me! Couldn’t keep anything down.) The neurological symptoms kept worsening. MRI revealed a new lesion that is invading the epidural area and nerve roots. I’m now also on a pretty high dose of steroids which is completely messing with my sleep…. So 😴. Fortunately the pain is under control although everyone seems to be predicting quite a bit of a pain flare. Judging by how I felt after one dose, I suspect they are correct this time. Previously I didn’t have much trouble with the exception of the c-spine for skull mets which was sore for a bit.
Hope the pain eases and glad you nuked any troublesome mets.
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Karen and sadiesservant, I’m sorry you are having pain and other issues. I can’t relate completely because my pain is generally mild at this point, but I’m sending you both virtual hugs. (((Hugs))
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Thanks All. Feeling more like myself now. I start Vinorelbine next week…my last oral chemo option. Also, like many of you, sleep and comfort issues - or lack thereof -have been on my mind so I took the plunge and bought an electric adjustable bed ( King size). It arrived today so I’m away to play on it!
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Karen I'm excited for you and your new bed. I splurged and bought one last year (Queen size) and love it. It doesn't always solve all my sleep issues but it helps. I hope yours gives you a good nights sleep.
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Hi Ladies,
When you are going through radiation do you stop all supplements and vitamins until you are done with treatment?
We just bought a new bed a few months ago and now I am wishing we had an electrical bed. Our bed is somewhat high and it is hard for me to get out of it. Uuugh! Did you get sleep number bed?
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Anne16 - My MO doesn't want me to take supplements or vitamins any time, except calcium and vitamin D but I think that the thought is to be off of them while going through radiation if you are taking them. I would check with your MO to be sure.
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Anne16, same deal here. Many supplements interact with chemotherapy and other treatments. I tried one to boost my blood and was told to stop with Xeloda. I work to ensure I get all the vitamins I need from my diet which is probably the best way to go for me as I need to work to keep weight on
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Yes, I stopped regular vitamins. She said I could continue with the calcium.
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That's so interesting, because calcium is one thing I'm NOT supposed to take. My bones were leaching calcium. I don't take a multi either. I do take Vitamin D and magnesium.
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went for dr appointment she told me it showed some cancer has reduced (yay) and in different area stayed the same (skull) (still sorta yay ) and in other area looks like it progressed (wtf)
I did not think this was possible is this normal she said maybe progression is a flare but can’t be sure ye
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hello all - is there anyone in this thread who has oligometastatic bone mets and is, or is considering, treating with targeted radiation only and NO meds at all?
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beth1965, unfortunately, yes, it’s possible. There can be a lot of heterogeneity in the cancer in our bodies with one area responding to a treatment and another area not. I’ve had situations with my bones where everything looked stable elsewhere but I clearly had subtle progression in specific bone mets that were causing some issues.
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sadie - it’s such a strange thing our bodies can do. It totally baffled me.Glad to know it’s not just me I appreciate your reply
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Hi Edge - I initially had a bone met in one spot in 2018 and underwent SBRT radiation to zap it for curative measures. It worked at that time (I did take exemestane also). However, in 2020, four more bone mets showed up and I started on Ibrance, Faslodex and Xgeva injections as a systemic treatment. Currently, I am in discussions with my radiation oncologist to zap these other four bone mets. We'll make the decision soon and I'll let you know how it goes. Good luck to you!
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Hi Sunshine - I am in the same boat with you. My bones were leaching calcium into my bloodstream and it was so bad that my kidneys shut down from hypercalcemia. I was hospitalized in February for several days while many bags of saline solution was run through me. Since then my calcium levels are still just over normal and I’ve had two more bags of saline in the oncologist’s office. I’ve even started watching my calcium intake in foods. I hope you are doing better now. I have bloodwork tomorrow and will know how my calcium is doing then. Good luck to us both!
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Hi all, this is probably a technical question and it only occurred to me today I recured with bone mets while I was on tamoxifen I had been on it 7 years when this happened the oncologist put me on letrozole and a CDK46 inhibitor and it is working so far scans again at the end of May, what I want to know is if an antihormonal failed me why does it work when a CDK46 inhibitor is added to it? Plus does anyone know if outcomes are worse if you recure while on anti-hormones?0
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Beth1965 - Yep, I’ve had both stable and progression at the same time. If the progression was singular and not intense, we waited until the next scan to see if it went away. In one case, it did not so I choose to radiate the spot of progression and stay on my current line of treatment as that has worked for some. Not me, but it was worth a try.
Sunnidays - I was on tamoxifen as adjuvant therapy for 3.5 years. When I was dx MBC my MO chose to move me to Fulvestrant which is a SERD along with Ibrance. You may find this article helpful although it won’t answer all your question. https://www.nejm.org/doi/full/10.1056/nejmoa052258#:~:text=The%20aromatase%20inhibitor%20letrozole%20is,breast%20cancer%20in%20postmenopausal%20women.
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sharware, wow, my was not nearly that bad. My blood calcium was moderately elevated before my MBC diagnosis. Enough for my PCP and MO to comment on it and once I got the MBC diagnosis, I stopped all supplements that might contain calcium.
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sunshine99 - why were your bones leaching calcium into your blood? please forgive if this information is already previously in this thread. that is scary! and sharware - that you had the same experience, oh no.
also sharware - i do wish you the best with whatever you decide with your ro. so many choices to research, consider and choose from. maddening.
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breast cancer mets to the bone quite often cause calcium to be taken from the bone and leaked into the blood. It's a side effect of the cancer.
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Thank you, moth. I didn't know the answer to that.
On another note, I think I may have a UTI. Haven't had one in FOREVER, but there's some other stuff going on, too. My mind is wondering about ovarian cancer. I have a call into my PCP to at least get a urinalysis to see if there's anything growing in there. I have a bit of a fever, am super tired, and my back hurts more than usual. Am hoping it's just a UTI.
Carol
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Sunnidays - I don't know that I can adequately answer your question to all the technical specifics but here is what was explained to me that made sense. Tamoxifen and other anti-hormonals block the estrogen from binding to the receptor site on cells. In effect, for estrogen positive tumors, it is starving them of the hormone source they need to grow and multiply. The CD4/6 inhibitors disrupt the process of cells replicating themselves. So the CD4/6 inhibitor isn't the same as Tamoxifen but they work synergistically. One blocks the nourishment source for tumor growth and the other works to prevent the tumor cells from being able to replicate. That's how I understood the explanation from my MO. If that helps.
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rk2020- it seems so strange to me but I guess it happens. I will look into how much progression as you getting radiation on progressed areas seems like good idea as it does seem to be working elsewher
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Beth, in my case it’s a bit like picking your battles. I have extensive bone mets - practically everywhere (spine, skull, sternum, hips, scapulas, ribs, etc.). I’m fortunate in that my cancer is slow growing but that means it slowly lays down sclerotic lesions which are often difficult to track for progression. (This is a topic I have debated with folks on here many times. There is a misunderstanding that all sclerotic mets are due to the bone healing due to successful treatment. That’s not the case in patients like myself. My bone, because the cancer is slow, takes the time to lay down scabs to “fix it” but that does not mean it’s not active cancer. This is opposed to lytic lesions which eat into the bone. This just confirmed in a conversation with my RO.) We watched with scans for many years and overall, other than at the very beginning of treatment when Arimidex failed, they have always been described as stable.
Over that time things did crop up that required radiation treatment. The most obvious was in September 2020 when I believe Faslodex and Verzenio started to fail. I began getting brutal headaches. By 11:00 AM they were absolute blinders. I had some skull mets which had caused a bit of facial numbness that we were watching. Scans didn’t show progression but steroids completely resolved the headaches which was a sign that there was brain swelling and in areas where there are a lot of nerves, a couple of millimeters of growth - difficult to measure - can cause problems. Five sessions of rads took care of it. Then by January (I knew from symptoms I was experiencing in December) I had liver mets.
Now the focus has shifted to my liver as it’s so much easier to track progression and/or success of the treatment. And while I am currently going through rads to deal with the lesion in my spine that is giving me grief, I’m good with that approach as visceral mets are more likely to cause issues. So, to sum, it seems that in my case I was able to maintain mostly stable for a long time with an occasional met that managed to sneak past the guard. Thankfully I have a great RO who is quick to blast the little blighters
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sadiesservant. that's good information. I'm always a bit confused about the terms used with our bone mets.
Carol
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Sadie - I am quite similar extensive Mets basically everywhere head to toe. The skull Mets always scare me
Thanks for all the information and telling of your situation it be is very helpful
I am sorry to hear about your liver Mets I hope you are able to keep stable sending hugs and good wishes your way
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