Bone Mets Thread
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Wanted to reach out to katyblu and echo other comments about your having urgent surgery on both legs, wow, that is a lot all at once, and it is really great that you're walking and recovering. I hear you about the "when will I get back to normal", and my fear along the lines of, what IS my new normal going to be? It's a longer road with bone surgery, and I'm not great with long term patience... but am working on it. Just want to acknowledge how incredibly hard this is. Glad you're here with us!
Fighter, I also second everything that our dear Divine said. The beginning of this diagnosis is so hard, and I know I felt fear and also moments of wanting to give up, questioning my worth as a person now that my future isn't at all what I thought it was going to be. Want to encourage you to both keep sharing how you're feeling with us, and know that we really understand the roller coaster.
Thank you for the well wishes and encouragement to keep on keeping on, it's storming here today so perfect weather for treating myself gently.
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I appreciate the nice words spoken of me! I do believe in self care and self compassion, and as katyblu says, extending grace to ourselves. Please know, tho, I’m not a fan of toxic positivity where only good things are allowed to be mentioned. We all have our moments! I let myself feel the crappy stuff but try not to stay stuck in it for too long. I am accepting of and thankful for dh’s help, but I would much rather be independent! So sometimes it’s frustrating. Even tho dh does numerous things for me every day and I verbally thank him a lot, I can still get cranky! For example, a side effect of the oral chemo I take is that my hands and feet get red and chapped, so I slather cream and Vaseline on my feet each morning before I put on socks. I cannot reach the bottom of my foot on the leg with the femoral rod, so dh has to put the cream and Vaseline on for me. But I hate how he does it, which is using tiny amounts of cream and rubbing it in, but I want big globs smeared over the surface. About once a week, we have a petty disagreement where I tell him he’s not doing it right, he tells me he is, and I say, “well, it’s my foot so I think I know if you’re smearing that cream on right!” You’d think I could be more grateful….. Lol!
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Tsioutsiou,
I am also Greek and I read the stage 4 forums because of my 65 year old mother, who has mets in bones and lungs. You will find valuable information here and you will also read stories that encourage you to help your mother. At least, this is what I feel. I don’t think the stat you read about 24 months is accurate. Actually, everyone is a different case and is treated individually. At the beginning, you may feel disparate, but you will soon find peace and strength to support your mother and see your life from a different prospect. I wish you all the best.
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Fighter, you deserve kindness from yourself, as much as others deserve kindness. If you had a close friend with this diagnosis, how would you speak to them about their situation? Would you show them patience and support? We deserve this from ourselves too, I believe.
@sf-cakes I'm very heartened to see how well you are doing with your surgery recovery. This is amazing to me. I had scoliosis fusion surgery as a teenager back in the 1980s, and spent 2 weeks in hospital with a few months of gradual home recovery. The procedures have come a long way since then. Since I have spine mets this has had me thrown for a loop but you're doing really well. I'm less terrified now.
I'm very early to pain management, but I'd had a shooting skull pain for about 2 months until I started my meds about 10 days ago. I don't know if it was the letrozole, the zoledronic acid, or the ribociclib, but that's gone away. Maybe it's a placebo effect? I'll take it anyway.
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Hi Ladies: I want to give you all an update and ask some more questions. I have been on the Verzenio now for a little over 3 weeks. I started Jan 6. on Tuesday of this week saw oncologist, she said my tumor markers went up, but she said we just started medication and sometimes they go up initially when starting treatment.
1) My first question did that happen to any of you?
She is more concerned about my white blood cell count took a big hit and she is thinking maybe reducing the dose of verzenio. Right now, I am ok but she is concerned and may not allow my dental work right now. I do labs again on Feb 7. So much for zometa lol for now.
Now ladies hear is the most upsetting thing. She informed me she is going out on disability and will be gone for a few months. The doctor she has scheduled for me is one of 2. One was not my doctor but was head doctor and I had interaction with him 10 years ago when i first was diagnosed. He was the doctor of some of my teacher friends at our school and he is \excellent. The other doctor is relatively new to the practice but so far good reviews. I don't have energy running here and there trying to find doctors. I believe she is going to schedule me with the new doctor to the practice. I will just trust her She knows I need lots of warm and fuzzy doctors (LOL) I'm just so sad this is happening so early on in my treatment. The practice has several nurse practioners she asked me which one did I want to see. So I will be seeing the head one who I have known, and she has cared for me even when i was first diagnosed 10 years ago. This practice relies a lot on some of the nurse practioners for some appointments. She is absolutely the best. She takes all symptoms seriously and does not ignore concerns. I am very grateful for that. The plan now is to monitor my labs this month. In March she has sceduled a PET scan. She said that and results of my labs will determine if I stay on this protocol.
2)Ladies those of you who were on Verzenio did you take a hit on your wbc. Other than that, I have had no symptoms other than fatigue. Ladies I just need some confirmation that I am proceeding correctly. Is there anything I am missing or should ask.
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@Jen1 I started on Verzenio 150 mg in March 2021. I had previously started Letrozole the beginning of Feb 2021. My first PET scan wasn't until June since my mo wanted to give the meds time to work. At that time all my Mets had either resolved or showed marked decrease. In March of 2022, because of extreme fatigue, I agreed to go 100mg Verzenio. There have been studies that showed results were as good at the 100mg level as the 150mg dose.
You might want to check out the "Abemaciclib Verzenio for Stage IV" thread. That is where you can find what others have experienced on Verzenio.
Good luck.
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Jen1,
I started out on Verzenio 150mg and after about one month the dose was reduced to 100mg due to severe diarrhea. I no longer remember the affect it had on my white blood cell count. The 100mg dose kept my liver and bone lesions stable or reduced in size for 27 months. As going2beatthis recommends please visit the "Abemaciclib Verzenio for Stage IV" thread for much more.
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Does anyone achieve NEAD when you have bone mets?? I know xbronx did, but I believe she had a single met and it was radiated.
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@irishlove I have been NEAD since May 2022. I had a number of bone mets when I was initially diagnosed deNovo in Feb 2021.
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Irishlove, yes you are correct. It was twelve years as of this past July. I am also no longer on any medication ( since 11/23). Rads to the met and 12 years of AIs have been my only treatment save for 3 years on an older bone strengthener, Pamidronate, which is not used much anymore.
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jen, sorry to hear your onc must take a disability leave, but it sounds like you should be in good hands. It’s unsettling at first, but you do adjust. My onc retired after ten years and while I have a great replacement, it still took awhile to adapt, but I did.
In my experience, NPs are like the rock stars of the show. I’ve seen them at the pcp, the cardiologist and the onc and they are thorough, knowledgeable and patient. Most people I know love their NPs. Also, any time you want to talk to the onc, you can always request to see her or hear from her. Give yourself time to establish the new relationships.
Verzenio affects plenty of women’s white blood counts and it’s not uncommon to get a dose reduction that can still be effective. In my case, when I was on it my red blood cells took a bigger hit. It’s good you’re having scans next month. It will allow time for Verzenio to work, but soon enough that if it’s not, you can move to a new treatment. Wishing you the best.
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I also reach NEAD after 1 year of ribociclib +letrozole. I couldn't believe it. Before my PET was like a Christmas tree, there were almost no bones in my body without at least one mets...and 3 collapsed vertebrae. And my liver was full too.
(Now I may have a bone recurrence, after switching to Capecitabine, but I'm waiting for biopsy, as may be is inflamation)
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Hello ladies
i would like to say thank you for your support. I am a little ready to go over.
diagnosed stage 3 in Jan 2022, er+\her-, did chemo, mastectomy, radiation, anastrozole+verzenio. 2 months ago On my last routine blood work my ca27-29 was 44 and did ct scan showed multifocal bone metastasis. My onc order a bone biopsy I still can’t do it yet long story. Yesterday I did a pet scan show more progression. My question: there is no way Doctor can start treatment without the biopsy result because I don’t when I can do the biopsy?? I am really scare for more progression
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I actually started treatments before biopsy in 2022.
I actually never had an actual biopsy since 2019...i will have my first one in couple days.
Did you or your oncologist considered a liquid biopsy, in the case you can't have a tissue biopsy? It may be a good alternative...
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Yes I did a liquid biopsy 2 weeks ago. It takes 6weeks for the results
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Choosing the right thereapy sometimes is better than have a sudden wrong therapy...may be that's the reason they want to delay.
I know it is super scarry.
I also had to wait 40 days in between ribociclib and my next treatment xgeva, they told me was to flush away every old med I had in me, and waiting for a test as well...i had liver met and there were a little progression in the waiting time.
You should discuss well pro e cons of waiting that long with your MO, they may give you a sotisfying answer.
I wish you all the best
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Re NED and bone mets, my onc said that while you can be stable with them, they will never show as"NED", because even the healed lesions show as "scar like" feature on scans, i.e there is always "evidence" of cancer there. I had told him I was happy to see that my scans showed as stable, but that I was hoping for NED. He said that would never happen with bone only mets because of the "scars" previously mentioned. He said it's only the non bone tumors that can become totally undetectable and present on scans as no cancer - at least that was my understanding of what he said.
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My MO doesn't do the No Evidence of Active Disease statement, she'll simply say "stable". I've had no progression in bone for three years now. The surgery I just had was due to a fracture that occurred two years after we found a met in that vertebrae.
Also, my WBC, as well as platelets, hemoglobin, neutrophils...all absolutely tanked after my very first cycle of Ibrance at full dose. Ended up in the hospital due to neutrpenic fever - I felt fine, other than chills from a fever that cleared in a day. My MO restarted me on low dose Ibrance after that, which I've been on for three years now. Occasionally my WBC/ANC has been just a little too low to start the next cycle, but overall it's been okay. All of these CDK targeted therapies seem to hit WBC pretty hard, and it's common to reduce the dose. My MO said efficacy on Ibrance/Verzenio/Kisqali is more about whether one's body reacts to the meds, and isn't really dose dependent.
Recovery from spinal surgery continues, it feels like it's been much longer but it hasn't even been a week. I'm very tired and moving around my house slowly, but am moving/walking, playing cards with Mum and Auntie, taking naps, eating some. Have been able to reduce my pain meds by about half. Slow and steady! Have to keep reminding myself it's not a sprint...
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threetree,
While there will be evidence that a bone met existed, like a scar, I don’t interpret NED as meaning no evidence that disease ever existed. For that reason, I prefer NEAD, as it indicates that nothing is metabolically active. I literally had one bone met which continues to show up as an artifact/scar on scans but has been metabolically inactive for 12 years . So yes, that “evidence” will always be there but without metabolic activity it is no more than a scar.
I think that NED/NEAD is more of a semantic argument since there isn’t a black and white medical definition. NED has also come to replace remission or partial remission in many cases.
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Xbrnxgrl - I totally agree with what you are saying. Semantics for sure. I don't think the oncologists at my clinic really use the terms NED and NEAD, but I read them a lot on these threads.
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threetree, because my diagnosis was bone mets, I would see my written scan reports, when they used to be printed out, with a handwritten “stable” scrawled across the top. Never NED or NEAD. Same explanation you gave is what I was told. I am always happy with stable.
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Ditto, Divine. Stable works for me.
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I have a couple of met spots on my iliac bone which they tell me is the hip bone so last week I did something really embarrassing I went out for dinner and when the hostess called me to be seated in the restaurant, I really don’t know what happened but the next thing I knew I was on my butt in the middle of this restaurant. nothing was broken. I don’t think nothing was bleeding. Nothing was hurting so here it is a week later and now my butt hurts on that side where the Mets are so I’m not sure if I should even mention it to the MO or just hope it gets better, any ideas?
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I would let them know. It could be just because it has mets or maybe some damage was done that they'll want to know about.
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Hi Ladies:
going2beatthis-Thank you so much
wenimvl-Thank you for your response
divinemrmm/Thank you so much Your kind words and responses always calm me down
I hope I did not forget any of you. I hope I will get to the place where I can be of help to all of you in some way also.
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spookiesmom, OUCH! I hope you're OK. It probably wouldn't hurt to at least mention it to your MO, especially if the pain is persisting or getting worse.
Carol
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Agree 100% with everything you've said. Started Kisqali in August 2022, first scans in October 2022 showed multiple sclerotic bone mets and all subsequent scans have confirmed that. Radiologist uses the term "stable", my MO says "NEAD". I'm happy with both. ☺️
Eleanora
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Chiming in on the NED/NEAD vs stable conversation.
My MO states "stable". I have the patient portal, and I read his notes he submits to the portal. Last visit he said "stable on Lynparza", when my scans showed no change/no growth of a liver lesion, and even with some of the liver lesions not seen on the current scan. I have never heard my MO's- past or present MO- ever use the words NED/NEAD. We talk on here about NED/NEAD, but I guess most MO's say "stable" when the current treatment is keeping the cancer at bay.
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Stable is a sweet enough word if you haven't heard it for a while.
Frankly I think there is a bit too much focus on 'getting to NED status' especially by the newly diagnosed or if you have bone-only disease. It just seems a way to set yourself up for disappointment and feelings of failure when for your particular situation it was either highly unlikely or stable is a great result anyway.
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