Bone Mets Thread
Comments
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Interesting article, thank you for sharing! I had this in the back of my mind for a long time....It's not about painkillers, it's about anti-inflammatory drugs. Could it be that we see an increase in cancer rate in younger population ( supposedly they didn't live long enough to be exposed to that many cancer-causing toxins) because of overuse of these drugs? I don't suspect them to cause cancer, but I feel they do deprive the immune system of a normal opportunity to learn how to do its job well. What if we evolved to need infections to have a well functioning immune system? So I feel we should embrace every cold and every fever that comes along, and let the immune system enter the high gear. In this process it might naturaly get rid of other abnormalities in the body, as demonstrated by Coley work using infections to treat cancer.
Anyhow, I am preparing for surgery and I've been prescribed a huge amount (in my opinion) of things to take. That's why this article caught my attention. I am uneasy about all the medication given. On one hand, I understand it's going to be very painful, and something for pain should be good. On the other hand, I would like to let my immune system experience an uproar, as it should after such major surgery (bmx). Perhaps with this occasion might become extra vigilant for a while and do a good clean up throughout the body.
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Zarovka, That is a wonderful article. It really makes me think. I’ve struggled with rest all my life. “You have to be productive”, says that little voice in my head. My therapist helped me see this is a lifetime of learning and it takes time and effort to change.
I now find that when pain is bad I don’t push through. I stretch out on my bed and rest. It usually takes 15-30 minutes but it helps. I used to pop an ibuprofen and lie down. I’m getting the same result without the ibuprofen. Of course this is not mind numbing pain as some experience. But I find that by giving in & resting early in the pain cycle it doesn’t get really bad. I guess I finally started listening to my body. That said I will pop an ibuprofen after that rest if pain is getting worse.
I also struggled with time of day. “It’s too early in the morning to rest.” “ It’s too close to dinner I won’t sleep tonight.” Of course I’m a little nuts so I even think “what if someone finds me lying down at this time”. See I really am loopy so learn what not to do from me. I am terrified of pain that might come in the future. Something else to work on.
I reported pain in a new place in my spine last spring so pain is good. Otherwise the mo would not have found the mets.
Wishing you all the best and pain free peaceful days ahead.0 -
Zarovka, That is a wonderful article. It really makes me think. I’ve struggled with rest all my life. “You have to be productive”, says that little voice in my head. My therapist helped me see this is a lifetime of learning and it takes time and effort to change.
I now find that when pain is bad I don’t push through. I stretch out on my bed and rest. It usually takes 15-30 minutes but it helps. I used to pop an ibuprofen and lie down. I’m getting the same result without the ibuprofen. Of course this is not mind numbing pain as some experience. But I find that by giving in & resting early in the pain cycle it doesn’t get really bad. I guess I finally started listening to my body. That said I will pop an ibuprofen after that rest if pain is getting worse.
I also struggled with time of day. “It’s too early in the morning to rest.” “ It’s too close to dinner I won’t sleep tonight.” Of course I’m a little nuts so I even think “what if someone finds me lying down at this time”. See I really am loopy so learn what not to do from me. I am terrified of pain that might come in the future. Something else to work on.
I reported pain in a new place in my spine last spring so pain is good. Otherwise the mo would not have found the mets.
Wishing you all the best and pain free peaceful days ahead.0 -
Thanks Z, great read. As a kid, I played in the dirt and mud and very rarely have been sick, honestly only a handful of times in at least 30 years. My DH and I have had many conversations about pills for this and that and super sanitized kids, wondering what effect that may have down the line. Who knows but it really got me thinking....
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"I know how to sleep but resting is an in-between space I do not inhabit. It's like an ambiguous place that can be reached only by walking into a magic closet and emerging on the other side to find a dense forest and a talking lion, a lion who can guide me toward the owl who supplies the forest with pain pills." Yeah. That's me. This costoconfrikinitis is teaching me how to rest.
>Z<
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https://www.nature.com/articles/s41523-018-0054-x
Sharing this article “Characterization of bone only metastasis patients with respect to tumor subtypes” from Nature. Even though it bummed me out and was conducted pre-Cdk46 inhibitors, it's good to see research in this area. It seems however to refute the idea that many MBC bone mets folks can go on to live out a normal life span. Also, the info on de novo dx is opposite of what I've read elsewhere - that de novo has a longer OS often as the cancer has not already had a line of treatment
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Z.....fascinating reading. Thank you so much for that. I'm now going to go and lie on my bed and.....rest....and heal.
Whenever I report extra pain to my MO he makes enquiries about it to be certain and then says one word, "Rest".
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Excellent and very thought-provoking article, Z...thank you! Worth re-reading and sharing with family and friends!
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Hello lovely ladies, Joyner, Leapfrog, there you are, I knew you were hiding out somewhere; I am joining the bone mets thread. I have not read all 691 pages of it though. That's a tall order. I've now got scans showing widespread bone mets, and one very eaten up vertebrae. I have no pain so far. But I began Xgeva yesterday and get to suck on a calcium/vitamin D pill once a day. I'm happy to have your company, all.
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Jen, thank you for this article - I had been searching for such data!
I don't think the article refutes the previous understanding that de-novo mets have a slightly better prognosis than relapsed mets. The article does show that the overall survival from the time of being diagnosed with cancer is (much) shorter for de-novo patients (figure 3), but not that the overall survival from the metastatic diagnosis is shorter. And this makes perfect sense. If someone had stage II cancer that came back as stage IV after ten years, they already have a ten year jump in overall survival versus someone who was diagnosed as de novo metastatic.
The encouraging thing is that the same figure 3 shows that for the de-novo metastatic BOM patients the 10-year survival from breast cancer diagnosis (which in their case is also survival from metastatic diagnosis) is just under 30% and 5 year is around 55%. This figure does not break the cancer types by receptor status, so it includes TNBC. The article mentions that median survival for de-novo BOM patients from diagnosis/metastatic diagnosis is 5.5 years.
This compares somewhat favorably to figure 2b, which shows that for the entire population of BOM patients (de novo and relapsed) the 10-year survival from the time of metastatic diagnosis is around 20% (give or take depending on receptor status) and the 5 year survival is around 50% (except for TNBC; it's probably in the 40's if you include TNBC) . The article mentions that median survival for the entire metastatic population studied (de novo plus relapsed) from metastatic diagnosis is 4.9 years.
These are small differences, for sure, but I think they still point in the direction of de novo metastatic disease having a slightly better prognosis than relapsed metastatic disease. That being said, I would have gladly exchanged those "improved" de novo odds for a clean initial PET scan and a chance of fighting it out as a stage III for a few years.
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Good reporting and summarizing, Piggy, but I just don't set too much store behind numbers anymore.
I have 20+ brain mets, and I wasn't expected to live past 2017 (they set me up with palliative care and already had "the talk" regarding moving on to hospice...this was back in Sept of last year) . Two of my 20+ lesions are bigger than 4 cm and are inoperable. Had WBR, but they are still there and growing and robbing me of my eyesight and mobility....but at least the WBR gave me a few more months and I can still walk with a cane and talk.
This horrible H3N2 Strain A influenza could take any one of us out. The death count in Calif is over 130 now, and it hasn't even peaked yet. Chemo-induced heart attacks could also take any one of us out, too. (Been reading up on those since I already have a pre-existing heart condition to boot.) Then there's the chance of hemorrhaging from the odd brain tumor, which brain mets sisters are at risk for, or even blood clots (when you're on chemo, you have a higher risk) going into the lungs or brain.
I just don't want to think too much about all this stuff. It's overwhelming. Like my palliative care doc said last Sept (he's a gem, I adore him), "Well, Lita, you could have six more weeks, six months, or SIXTEEN more months. Or.....you might just have six days. We just don't know." - - - - Hey, look what happened to Jack on THIS IS US!!
I know of women who have died w/in six months of an MBC cancer Dx, and I know of women who are still kicking after five years with MBC. It all falls along a spectrum. We're all gonna go when we're gonna go.
L
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Chef and Candy,
I am also new here and enjoying, appreciating and admiring our many outstanding guides who arrived here before us and are so generous in sharing experiences, wisdom and insight.
Here is another fantastic resource. It has helped me personally and also other people I know who have been recently diagnosed with cancer. The National Comprehensive Cancer Network (NCCN) consists of 27 facilities in the country like MD Anderson, Mayo, etc. These facilities do the research and collaborate to come up with current cancer NCCN guidelines that non-NCCN facilities are supposed to follow. I am very blessed to be able to get my treatment at one of these world-class facilities.
They also write NCCN guidelines for cancer patients and caregivers to read. They provide these guidelines for all cancers not just the one pertinent to us - MBC. When I hear of someone I know, newly cancer-diagnosed, I send them the link to their cancer's NCCN Guidlines for Patients. This document will walk you through the entire scope of MBC, from diagnosis, scans, treatment protocols, etc. I strongly recommend it as a great MBC "primer" and reference manual throughout your journey. You can read this, learn the basics and then branch out to learn more from other sources.
Here is the link to NCCN Guidelines for MBC Patients:
Https://www.nccn.org/patients/guidelines/stage_iv_breast/index.html
Warmly,
V
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Lita, of course you are right, and the statistics don't tell us anything about our individual fate. If they did, we'd both be happily trotting along, enjoying a cancer free life, like the majority of women, instead of winning the 0.72% chance lottery of having de novo metastatic breast cancer.
It's been less than a month since my diagnosis, so my emotions are still quite raw. I am 42 years old and have no symptoms whatsoever even though the PET scan showed lesions all over my bones. I'm still desperately looking for someone, some study, some miracle to tell me I have a reasonable shot of seeing my 6-year old girl grow up. Deep down, I know nobody can.
I've been following your story for the last month or so, and I'm amazed at your optimism and your grace. I hope you stay around a long, long time and beat those statistics. I hope we all do. I'm thankful for all of you being here, doing it one step at the time, showing me the way.
Hugs.
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Lita, good to see you! Keeping you in my prayers! You are one tough lady!!!
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HELLO LITA!
I am new here...but I have been reading your story. Bless you for being strong and optimistic and generous in sharing your story.
I will send strong, positive thoughts your way and pray for more everything good for you.
Warmly,
V
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Lita, great reading. Piggy I hope you get to see your daughter grow. Enjoy every moment, for years and years I hope x
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Piggy - We'll be here casually mentioning we're on our way to our daughters' college graduation at some point. The first few months are painful beyond believe but you'll make it.
>Z<
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Hi Lita, again you are so wise. I’m glad you share your insights with all of us.
Welcome, Piggy, you will find support and caring here that you couldn’t imagine. Twelve years ago I thought this is it. Stage 3. Done. Voila Herceptin passed the FDA and here I am. Mets discovered last year. Learning about all new discoveries. Ibrance, Tykerb, Faslodex etc. Always something new coming. Sending you armfuls of hope and hugs.
Amarantha. I remember you from Ibrance thread. Sorry it didn’t work for you either. Onward we go.
Maire
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Hi Jen- Interesting article. My takeaway is that median OS for metastatic bone-only ER-positive patients was around five years (whether de novo or not)- meaning half went longer, half went shorter- and this was before the newer treatments of CDK4.6 inhibitors and whatever we get in the future. The numbers look worse for triple-negative, but that was all before immunotherapy. Here is hoping that newer drugs work a lot better for all of us, and overall survival jumps much higher.
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Piggy and Gumdoctor, welcome. Eight months ago I was where you are now, stunned and shocked and trying to just find where bottom was. You will get your feet under you, and we'll be here with you every step of the way. Get your support team in place-family, friends, and of course medical team. You're young, and that's tough, but it will work to your advantage in responding to treatment. One of my doctors referred to it as a "positive performance profile." Work on the things you can control, like diet and exercise, and you will start to gain back some semblance of control over other things. Hugs and prayers to you.
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Hi everyone, I just read this article and thought I'd post it for your interest. BBL!
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I am starting zometa next month along with Ibrance and Latrozole for mets in the lung and liver.Anything advise on side effect management? And how effective has it been for you.
Thanks
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All I can say is don't have anything planned for the first few days after the Zometa shot. I had debilitating flu like symptoms which I understand are common. Not everyone has them, but if you are one of the lucky ones, you'll want to be home in bed.
>Z<
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Therishope, take a benadryl an hour b4 you get the Zometa. it will help.
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Sorry I haven’t been posting much lately. I’ve been tired and have been resting for my DD and grandsons visit this Sunday for one week. Had Doxil today and they did my TMs. The CA 15-3 went up like crazy 704 to 989. Scary. It’s the highest ever! It’s always been spot on with what’s going on with me. I’m scheduled for scans 2/21 right after my DD goes back to Paris. (Can’t to it while the baby is here). I’m supposed to have the Y90 on 3/2. Up until now all my progression has been in the liver. I hope the Y 90 is still an option for me and that the Mets aren’t anyplace new! Ugh!!!
Babs
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Babs - I’m sorry to hear about the marker rise. Saying a prayer that your Y90 will be right on schedule. Have a wonderful visit with your daughter and grandson!
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Here's an interesting article on developments in the treatment of mets to the spine:
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Babs- Sorry you've been feeling tired and that the TMs went up Seeing your daughter and grandson is the best medicine. Hope the Y-90 goes and works as hoped!
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Babs - my only comment is please put Y90 scheduling ahead of work. I want your DD and DGD to have lots more time with you. Nothing more important.
>Z<
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Babs I have been thinking about you. I hope mets aren’t anyplace new. Enjoy your daughter and grandbaby’s visit. Nothing like holding a baby to help you relax. Hoping the Y-90 works well.
Joyner. Very good article. I was just thinking about how spinal rads would work. I am in a small local cancer center without stereotactic rads. Thank you all for these articles.
Scanxity Weekend. Pet Monday and mo on Tuesday. I’ve been feeling pretty good but that could be steroids. Experiencing some dizziness. Don’t know if it’s from cold sinus infection or steroids or whatever. Grandkids this weekend will be a welcome distraction. Steroids sure helped arthritis pain. Now I guess I know what to ignore in the future.
Maire.0
