Bone Mets Thread
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Sending positive vibes, dunesleeper, that the CT findings bring good news.
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Hello everyone I am usually a "lurker" but I read all the posts all the time. What caught my attention this time was Dee's colonoscopy. I just endured one yesterday and even though the procedure itself wasn't bad the clinic my GP referred me to was so full that my appointment was at 9:45 am and I wasn't out until 2 pm! So I spent 36 hours fasting and didn't take my medications including my psych meds and the anastrazole so I was soo stressed. The only thing that saved the day was the sedation which was actually better than I expected and completely knocked me out. The other thing going on is that my TM's have been going up and my onc wanted a PET scan but Medicaid wouldn't pay for it so I went and purchased health insurance and called the onc secretary to have her run the PET again with that insurance and the hospital called me and told me they were calling to schedule a CT and bone not PET . I already had a CT in October which showed bone lesions healing so that doesn't make sense that the TMs are going up hence the need for a PET. I feel like I am going round in circles and I read in these forums that the oncs fight for you with the insurance but my onc's secretary gives up too easily I feel. Any suggestions welcome. And ah btw the colonoscopy results are that I am OK and no need for another one in 10 YEARS! Yeah!
Hope those of you with the ONJ problems get healed soon, I take Zometa too but until now thank goodness no se's from that.
Thank you for keeping the forum running it really helps me.
Aurora
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Aurora, wow what an ordeal that was. And 36 hours of fasting, I wouldn't have lasted but good that your results were ok. I hope they can figure out what is going on with your tumor markers. Have they gone up alot or just a little? My onc said it's normal to have a little fluctuation here and there as long as it stabilizes. Best of luck to you! Annie
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Thanks Annie, my onc did not specify the ranges that the TM's have gone up she just said that they have been consistently going up for the last three quarters (she only measures them every three months). I don't see her until March 10th which is when she'll run the tests again. Last Wednesday I called the office and spoke to the appointments secretary who has been very kind to me and poured my blues to her and she checked my case and said she will speak to the doctor's secretary and make sure they requested a PET with the new insurance. I'll follow up next week. Thanks for responding to my post.Aurora
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Mammaray -it does take time to figure out you're living with cancer, not dying of it. Took me a good 8 months and an MO who gave me hope. Sending hugs to all.
Terre
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My doctor didn't even mention TMs this last time. I asked the nurse coordinator and she told me they had gone up. It's only up to 40, but isn't the issue whether or not it rises? And of course, if it continues to rise in 2 months, then that will show consistently of rising -- and that, as I understand it, indicates treatment is not working. They can be all happy about the parts that have improved or supposedly resolved, but that does not give them leave to ignore the new mets. Increased tumor marker and new mets to me means thinking about a new medication. But what do I know? I'm just the patient. LOL
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I've been a "lurker" for quite some time. This is a site of courage, hope, and sisterhood! We all have the same basic diagnosis, Stage IV breast cancer with bone mets, but we all have our own special new version. Hopefully, each of us is being treated with our individual type of the disease in mind and not the "group" treatment mentality.
We must all be our own advocates and insist on getting the answers we need. I have innumerable sclerotic/blastic bone lesions scattered throughout my osseous skeleton. So, every day is an adventure. Some days I'm great, no pain, no numbness, no pins and needles (which can happen anywhere over my body where the nerves are being irritated by mets or whatever villain lurks in my bones.) Some days are active pain days where my mets are most active, which can be my feet, knees, or now my sacral spine, SI joints, hips. As Gilda Radner said, "it's always something".
Tomorrow I am starting a new position as a Nurse Practitioner to develop a new service line for the medical practice and hospital I work for. It's a Fracture Liaison Service. No kidding! Me with the bad bones. Anyway, it's basically for identification and treatment of patients who have had fractures or are at risk for fractures mostly related to osteoporosis.
Let us start the week as one of our sisters said: PRO, pragmatic, realistic, and optimistic! YOU GO GIRLS! and thanks for being here.........................
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Welcome msparki! What a great job! I am thinking you'll bring a huge amount of compassion and understanding to the position. Love the Gilda Radner quote; she was an inspirational woman. And so right - it's always something!
I am a bit of a nut case (in a good, non-clincal way) and feel that everything should have a theme song. So perhaps we should choose one. I'm thinking perhaps a meld of two Tom Petty songs: The waiting is the hardest part, and I won't back down.
And "it's always something" could be our slogan!I have a long-haired white cat who drops fur everywhere, especially on my black clothes. His theme song is "Every time you go away, you take a piece of me with you."
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hey ladies, I am a long time lurker on here. I usually stick with my Facebook group, but I found this bone mets thread and I hope you can help me. I was diagnosed with thoracic spinal Mets back in October. I only had a rib and a pleural effusion prior to that progression. I had debilitating pain that went away with rest and a change in medication. I also was not allowed to do any exercise that put stress on my spinal column.
Let's fast forward to two weeks ago. I found out that the afinitor and aromasin combo knocked my tumor markers down by 50%. I assumed I was healed so I took it upon myself to go back to the gym and lift heavy weights again above my head and through my spine. I am in pain again now. I am confused. When you have bone mets will you always deal with pain if you put stress on the bone? Will I have to baby my spine for the rest of my life? Could this be a sign that my medication is not working?
My doctors won't radiate for pain due to me wanting to have afinitor and aromasin do it's job & the risks of lowering the platelets and red blood cell counts.
What can I do for exercise? I am getting restless.
what do you do for Pain? I was getting monthly massages but stopped bc I thought I was "cured." I got my first massage in three months yesterday I have been doing heat and ice. I also have a foam roller and back buddy for pain. I am not used to rest or stretching. I am 30 and an athlete and I am struggling with accepting that I cannot run or power lift anymore.
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msparki and caitedidruns ~ Glad you both stopped lurking and joined the conversation and support here!
Good luck with your new position, msparki! I echo what Terre said about your bringing much compassion and understanding to the job!
caite, hooray for the huge decrease in tumor markers, but I think it will take a scan to ascertain how healed your bone mets are at this point. I don't think a decrease in tumor markers automatically translates to healing -- just to less activity, if that makes sense. The lesions can still exist even if the cancer cells die off and are no longer active. Hopefully the lesions will also heal (e.g. fill in with healthy bone in the case of the lytic lesions), but it may take longer than it did to knock your TMs down -- at least that's how I picture the process. So for now, maybe stick with walking or hiking and swimming (if you have access to a pool) -- at least until a scan gives you and your onc a better picture of what's going on. But that's great news about your TMs!
I'm not sure massage (other than healing touch massage) with bone mets is a good idea. Too much pressure in the wrong place (which you and your therapist may not even realize is an affected area) seems like it could cause more harm than good. I would at least check with your onc (if you haven't already) before continuing them.
Oh, and there's a great thread here called Stage IV Fitness 2015. Plenty of very active Stage IV gals on it, including a few 1/2 marathoners, etc. It's given me so much hope and reassurance re. being active while living with a Stage IV dx. (((Hugs))) Deanna
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Welcome rnsparki and caitedidruns! Sounds like an exciting new position for you rnsparki. Caitedidruns, I have no advice for you except that I know when I have overdone it in the garden etc, I really pay the next day.
Wish me luck tomorrow, it's colonoscopy day. I'm probably the only person who is looking forward to getting it done, I've had digestive issues for almost 2 years now & this will be the first step in figuring out what is causing it. My surgeon is a lovely man who is very gentle & caring, he has followed my case since my first diagnosis, so I know I will be well taken care of.
Hi to everyone else! "I won't back down!!" love that KCM. Cheers, Dee
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hey all. Just pippin in to say hi. I have been keeping up with everyone's post but migraine is preventing me from typing much.
Hello to our newbies
Hugs to all
Kiwi. - love those songs. Another one is Elton John I am still standing.
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Hi, everyone!
Msparki, I agree with the others, what a gratifying job and wonderful that you can bring your cancer experience with bones to the position, good luck!
And GG27, good luck with the colonoscopy, and PattyPepper, hope the migraine is better now--in a weird way, it always surprises me when I have to deal with non-breast-cancer medical things, not that it should, but it does!
And caitdidrun, I definitely don't think you should be doing things that will stress your bones right off even though your tumor markers are down. My onc and radiation onc both told me that I needed to avoid high impact activities with the mets in my hips for a long time and possibly forever even though the rads took care of the pain pretty quickly. My rad onc in particular said that it takes a very long time for the bones to heal/grow and that the "hope" was that the damage would repair "because I'm young" (I'm 45, not that young!). When I asked my onc about 6 months later if I could run again and if not when, she told me I probably wouldn't ever be able to do that again. Everyone is different and your onc may have different advice, but it's probably a good idea to talke to her before you start up again. Hope you're feeling better after some rest!
And, Terre, I like your song ideas! I've taken the Bleachers "I wanna get better" as my sort of cancer theme song everytime I hear it
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hi caitdidrun and welcome. I am very sorry to see you going thru this tough dx at such a young age! I too was an athlete. I taught spinning 3x per week and lifted as well. When I first got my hip pain, I thought I had pulled something. I went to physical therapy and massage and thankfully did no further damage. My onc said no massages absolutely and the ortho said no spinning, but light recumbent biking was ok. I was too scared to try and now I have just become too lazy. I hope you can find something that fulfills you. It is a tough road to travel and having something to make you smile certainly helps!
Terre, I am going to think a while on my theme song. Great idea
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Hello everyone,
It's been a while. My first onc appointment since starting tamoxifen was inconclusive but that's better than progression. I'm going into a trial combining pamidronate and doxycycline. Anybody tried that combo?
DH and I just back from 3 weeks in St Maarten. Going for 10 weeks next year as we'll be retired. The scuba diving was amazing so we're going to do a bunch more next year.
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Tracey, welcome back and so nice to hear from you. A few of us were wondering where you were. Nice to hear you've been enjoying yourself! About the trial your speaking of, doxycycline is an antibiotic isn't it? I seem to remember someone on these boards mentioning it but can't remember who at the moment. Wishing you the best on this treatment combo!
PattyPepper, hope your migraine is better and so good to hear from you as well.
Caitedidrun, welcome but sorry you have reason to be here. I just finished rads to bone mets in December and still experience pain if I overdo it. I think we have to be careful when it comes to exercise. A little more gentle approach may be necesary, something like tai chi, walking, yoga. I know for me I can't even do sit ups anymore due to the met on my L5, too painful. Best of luck to you.
Hugs to all, Annie
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yay! Tracey's back! Try to stay warm up there-just returned from visiting family and spending a day in Saranac Lake NY for winter carnival. 15 here today actually doesn't feel cold.
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Welcome back Tracey - your trip sounds wonderful! The trial sounds quite interesting.
Welcome to the newbies too.
And glad to hear from you Patty. Sorry about the migrane; hope it gets better soon.
All is well in Auckland. Warm and mostly sunny, and we now have two office dogs! Got to meet Molly, the chocolate lab, yesterday. She wags from the neck back; quite an enthuisastic and sweet doggie. And of course, my first office love, Oscar, is here. He's the funniest dog ever; these big soulful expressive eyes. And he is definitely my buddy!
Wishing everyone a good week!
Terre
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Hey Tracey nice to hear from you! Warm welcome to newcomers! And Patty, oh those awful migraines - hope you feel better soon.rnparki - hope your first day went well.
Linda
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Caitie,
I have spinal bone mets and I don't put extra pressure on my spine with lifting weights or running. I'm afraid due to the arthritis in my knees, I will fall flat on my face. I have had radiation for the spinal mets which relieved the pain completely. How about power walking & light weights?
Terri
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Back from the hospital, my colonoscopy went well, nothing found. So now back to square one, don't know where I go from here to figure out why I have so much tummy trouble. Oh well, at least that's not a concern, I'm good for 10 years now.
Beautiful day here, took our little sports car, top down all day. Feel so bad for the folks on the east coast. We saw the news last night St John, NB, last year we were walking down that same street to the centre of the city, it's a beautiful park & we so enjoyed ourselves & they showed almost blizzard like conditions. Wish we could bring the rest of Canada here just til spring...
Hope everyone has a good night, I'm off to have a wee glass of wine & some food!! Cheers, Dee
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Hi Ladies,
I have posted this in a few threads to raise awareness of this petition, as I think it's an important cause to all of us. But response has been slow and has basically stalled. I am wondering if many people are not seeing it, so I am now posting it in some of the active threads. I hope you don't mind me doing this. If so, I will delete it.
Some of you might be familiar with Ann Silberman's great blog "Breast cancer...but doctor I hate pink", which has chronicled her journey from diagnosis to metastasis. I know many of us share her concern that Pinktober madness does not necessarily help towards BC research for a cure. She has started a change.org petition requesting that more fundraising dollars be allocated to finding a cure rather than just raising awareness. I am posting the link here, hoping that we all can support this cause, by signing the petition and sharing on social media. Thank You !!
https://www.change.org/p/keep-a-breast-foundation-...;
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Deblc, I was going to link that for you, but it's not going to the right page. Can you find it again & I will make it clickable for you. Cheers, Dee
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I edited. Hope it works now. Thanks !!!!!!
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Ann used to be a very active bco member. Some of you may remember heras "coolbreeze". She was very honest and forthright in her posts. I miss her!
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She has a very active Facebook page entitled "Breast cancer....but Doctor I hate Pink".
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Caryn, Thanks for the help with my question regarding the positioning of posts so that they could align more closely to the post being responded to. Hope that all is well with you. It is time for hubby and me to jump out of PA for a while and away from "cabin fever" . Take care. Peggy
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hey ladies.....I'm not only a icu nurse but a fellow bone mets. I'm in remission. Cancer is no longer active in my spine. But it takes literally years for sclerotic and lytic lesions to heal themselves from the damage. You still have to be Careful for fractures and compression. Do not start any new exercise program without you doc knowing
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Momonana6, I hadn't noticed you're in Pittsburgh till you just mentioned you're in PA. Just wanted to say I live about an hour from Pittsburgh in Ohio, we're Steelers fans, our son attends college in the 'Burgh, and it's where I doctor for bc, at Allegheny General Hospital. We are in the Pittsburgh area often for activities, restaurants and shopping. Curious where you & your hubby escape to from the winter blahs.
Vegasnurse, it is always interesting getting your nurse's insight on bc, doctors and hospitals.
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Hello MammaRay,
(I just got your username - LOL!!! Good for you
). Anyway, the question is why would you take an alternative course? If it's mistrust of the recommended course then get a second opinion and do your own research online to find out why it's being recommended and what its track record is. If it's side effects, they can be managed - and there's no guarantee the alternative medicine won't have side effects as well. There are also ways to have your cake and eat it too - integrative oncology works to combine the powerful forces of Western medicine against cancer with a whole range of alternative techniques for a holistic approach - it's very patient centered. Google "Ottawa Integrative Cancer Centre" for some ideas ("centre" is spelled the Canadian way). I'm always alarmed when someone wants to forego medicine entirely - here in Canada recently an aboriginal family took their child out of chemotherapy with a 95% success rate for a combination of a nutrition camp in Florida and native medicine. She died a few weeks later. The courts determined that it was their right.0
