Bone Mets Thread
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so being a whiner it has come too !!!!
This sucks. Seems like I’ve lost all my marbles.
Agaian you wou won’t need anything unless just something you might want personally. Lots of food
I forgot when cooking ad entyreesd
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good morning
Can't rememb
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Wow some great stories to read here I thank you all for the encouragement and support that is here and I am very grateful we are not alone.
I have started medical Marijuana, too early to tell if it's working yet and since I went on my diet of low sugar dairy and avoiding processed foods carbs etc my tumour markers have dropped 240 points. That was pretty good considering I have not been on any treatment for 8 weeks. I have started on a chemo tablet to try to get rid of those pesky cells in my bone marrow. The latest research is showing that they are in all our bone marrow but something can wake them up so they are working on a drug to put them back to sleep,
My siatic is still giving me grief down the left leg but the chiro is helping that but that sort of pain does reallyget you down, I read one of the ladies here had these zapped so that might be my next option if it doesn't improve. I do think it's from sitting for so long over 2 days having blood transfusions.
You ladies give me hope , sometimes our mind goes places and I know I think it's all too hard but we get up again and keep moving forward .
How is Z? She must be on a different forum as I often think of her as she was so knowledgeable and supportive when I can her 20 months ago
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Hi Patty! Good to see you posting! Think of you often and keep you in my prayers!!!
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Hi! ive written in lung and brain topics.
My mum had recurrence in her lungs, pleura and mediastine when she was 52 in 10/2014 .
Like one and half year ago she had progression in her bones, we didnt care about it in these moments.
Today we had her last scan under neck results, she "only" seems to have 4 small lessions in bone, D3, D8 and hip bone. Oncologist told us (one yeat ago) that they are like calcifications of previous mets but now D8 is bigger than previus scan. Her lymph node in mediastine is 3 mm smaller and now they consider her lymph as normal because its 10 mm size. They have told us that she is stable. Her CEA in april scan was 99,8 and 3 weeks ago it was 39.
My question is if any of you had good response in all mets except one and its really stable. Any one of you had radiation for spine?. My mum doesnt feel pain.
Greetings !
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Gracie-I've had a buzz doo, for over a year (since I started Taxotere). I did not buzz it, I did cut it from waist length to shoulder length, and let it fall out on it's own. It's now about 1/4 " length on the sides and back. I have no hair in the middle, top. It's like a reverse mohawk, or a very wide part. I hope it eventually grows back there too. The new chemo thins your hair, so I'm not sure what is going to happen to the little I have from not doing chemo for a month. This nearly no hair do, is great for the summertime though!
Kathryn-Beautiful picture of grandmother and granddaughter! Is she your first grandchild?
princess-I still have crying sessions once in a while. I'm always alone, and it's usually when a sappy love song comes on the radio, so I start thinking of our life, and the future life of my family without me. Let it out. It's our body's way of relieving some stress, I believe. I feel better afterwards. I sometimes even forget I have cancer. I just live one day at a time, and say I'm living with cancer not dying from it. Hugs! I'm glad you like your family of doctors. I like mine too. I get a second opinion, every time, I need to change treatments. I'll be starting number 7 treatment (since Stage 4, six years ago) next week. I actually like my second opinion dr better. She's more informative, since she is a breast oncologist, not a general oncologist (as my local one is). I'd probably go to her instead, but its 1 1/2 hrs to her at Dana Farber in Boston. And that's without traffic. It's sometimes taken us 3 hours to get there (because of accidents, etc).
I finally spoke to my local oncology office. My oncologist is on vacation this week, and had scheduled me for the next 3 weeks for Gemzar. After going to Boston last week, I want to do CMF instead. Only once every 3 weeks, instead of once a week for 3 weeks, and a week off. Of course the PA can not change it and we will have to wait for my oncologist to ok it. So they cancelled my chemo for this week. Only problem is my first chemo is next Thurs, the day I leave for a nephew's wedding in VT. I just hope I'm not feeling lousy for the wedding Sat evening. She said we could delay it to the following week (why not, I haven't had chemo since July 5th!), but we are leaving for vacation the next day, so I chose next week. I do hate that I have to rearrange my life around all these appointments! I still am refusing to not go on vacations though!
I hope everyone is staying cool during this heat wave (in the high 90s today with high humidity). I'm staying inside again today. Tomorrow I have to go out, but only to run into a restaurant, and then a store. LOL
Lynne
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Kathryn..I.never get tired of seeing happy Grandmas holding sweet little babies. She’s beautiful and so are you. Enjoy all the cuddles
Hi princess, I’m a year out from Stage IV and I am still surprised that I still get teary ..now mostly it’s frustratin rather than sadness. Being raised never to let anyone see you cry, my personal scientific study has found is that tears serve a purpose...it’s a release and let’s face it after a good cry you always feel better( except the stuffy nose and red eyes). Hang around here and share your feeling. We will always listen.
Patty, sending hugs and prayers your way. Hope you are enjoying your young men.
Finally gave in and started tramadol today. Back pain and spasm there and leg pain are getting to me. Bad night and a miserable trip to grocery strore...but I took a 2 hr nap after the pill. I blame letrozole & the weather. since I’m supposed to be stable. Off and on with tykerb...side effects keeping me close to home. Stupid cancer.
Take care all. Maire
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I do so wish we had some kind of button to let fellow user know that you've appreciated what they've said. In the meantime, thankyou all!
Gracie, don't forget the sunblock. I think if or when I buzz it all off, it will feel like a relief since the hair never really looks the way I want it to anyway. Then there's Florida and the frizz no matter what products I use.
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Very slowly, on two crutches at first, the rehab people should come and see you before you leave the hospital and show you how it's done, in Australia we have a thing called rehab in the home where they come every few days to see how you are coping and give you muscle strengthening exercises to get you moving independently again, now I can squat and walk as much as I want without the fear of a break, I have even been given the all clear to do light weight training.Not sure about where you are though. Best thing I did for myself.
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Lynne,
Did you have extensive liver mets when you had your mets? I knowI keep harping on the same thing, but it was such a disappoinment that the Taxol worked well on the lungs yet increased tumors in the liver.
Raven
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Good morning,
We keep sharing here that the hormonal therapies often work on some tumors, but not on others in different locations. This article came out yesterday confirming that this happens about half the time. https://www.sciencedaily.com/releases/2018/08/1808...
I suspect that many here could have told them this news some time ago. Maybe knowing will help us push for new approaches toward treatment and we can bring this up in discussions with our doctors.
Another article confirmed that Herceptin causes heart problems 4-8% of the time. It happens more frequently with those who have an underlying heart issue. Many of our early stage friends have this recommended treatment. Good to know before starting on that drug. https://www.medpagetoday.com/cardiology/chf/74418
Also wanted to follow up on my tooth issues, that appear to be complicated by Xgeva, which I've been taking for 2 3/4 years. (Started monthly and switched to quarterly after the first year.) I had a tremendous toothache (molar) and tried an antibiotic and lots of Tylenol in mid July to get it calmed down until I could get in to see someone. (These things only happen on Fridays after every dentist has left.) When I went in to have it checked, the solution was either remove it or do a root canal. My last dose of Xgeva was two months earlier. My research suggested the least invasive procedure so I elected the root canal since it doesn't leave a hole in the gum. For normal people the pain should be gone immediately after this procedure. It hurt intensely for four days and took two weeks after that before I could bite down at all on that side. (As it turns out they do push through to the bone to make sure the root is completely cleaned out before filling it up.) The dentist was very surprised and when I came back for round two of the root canal he said that if it was hurting a day later, it might be fractured and would have to come out after all. I wanted to wait and see if it calmed down, knowing how slowly I heal from anything these days. Two weeks after that 2nd procedure it finally feels better. I can actually bite down without pain. I did request antibiotics as well as an antimicrobial mouthwash, Chlorhexidine, to address any potential infection/irritation. (Thanks to Dr. Google and the topic of endodontics and cancer.) I get the crown next week, and it will probably hurt for two weeks after that.
So, here's what I learned:
- The biophosphates, like Xgeva, tend to have high concentrations settle in the jaw bone because we use it so much.
- That makes them extra sensitive to invasive dental procedures.
- Procedures that open up the tissue to the jawbone increase the risk of osteonecrosis, which we want to avoid.
- Any dental procedure, beyond cleaning, can irritate the underlying jaw bone, so antibiotics and this mouthwash are a good idea.
- Our regular dentists may be unaware of how this works. He was ready to pull the tooth because my healing time is sooooo slow. Glad I talked him out of it.
Waiting until ALL the pain is gone until taking Xgeva again. Hope this helps someone else!All the best,
Kathryn
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Kathryn,
I have been on Zometa infusions monthly, with the exception of a few skipped months, since May of 2016. Last year I went to my regular dentist for a cleaning and when the cleaning was done and the dentist came in to examine my teeth, we discussed the left, bottom last molar which was causing me some discomfort if I chewed on that side. He looked at the xrays, moved it around a little, and told me it should come out. I already knew it was somewhat loose and it had already had a root canal some years before and served as the back anchor for a bridge that no longer existed. He referred me to an oral surgeon because I was on Zometa, which is a bisphosphonate. The oral surgeon stated that even if I was his mother he wouldn't pull that molar! He said if he pulled it, there was a good chance that it would never heal up because of the bisphosphonates. I'm glad my regular dentist was prescient enough to refer me to the oral surgeon and that he wasn't interested in pulling it. I just don't chew anything substantial on that side. So we all need to be aware of the SEs of the treatments we receive. Thank goodness for the internet, and this site! Be well!
Cindy O'
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Amen Cindy! This whole business would be so much worse if you all weren’t here,sharing information!
Thank you
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Once again, thank you all SO MUCH for this Zometa/Osteonecrosis info. I've been having jaw-related and chewing problems since Mar/Apr. I went to the dentist, and as you all know, most of 'em don't know SQUAT about any of this. Not their fault...they probably just don't get trained in it, and if they do, b'cuz they don't have enuf exposure to it, they forget. My dentist HAD heard about it, but all he could do is prescribe some Rx numbing toothpaste and told me to be careful. He won't be doing any root canals or teeth pulling any time soon ;o).
Ice cream KILLS ME, and now I'm becoming a bit sensitive to hot foods as well. Have to eat everything "pee warm" now.
L
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Kittykat, I'm in Canada, I'm sure ( or at least I want to believe it
) that I will get some support coming back home. I just anxious about all the how's of rehabilitation and create in my head scenarios that are provably too much. So far I have been feeling pretty good about the health system here and felt supported on every step so I really have no good reason to believe that it will be different in this case. Next week I'm going on a trip (that was previously planned) for a week to the Grand Canyon and Sedona and will try to start moving things and get a surgery date after I come back. I really appreciate all the input, well wishes and sharing experiences from all of you, It really helped me to get things back into proportion and have a plan
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Vilma You will love Sedona and the Grand Canyon!
Lita- The sensitivity is really annoying! I’m glad I took the chance on the root canal...it was hurting so much that I couldn’t ride it out. Gotta say that when I heard the price tag I thought about taking a vacation instead. Why spend $2k on a tooth I’ll only use for a little while? On the other hand that filling had lasted 55 years so I got my money’s worth there. And, with a daily toothache, I would die from aggravation. No ice cream is tough!!!
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I had a root canal also. the oral surgeon was very aware of the bisphosphonates issue- he didn't know about Ibrance tho. I stopped the ibrance for 2 weeks. he was very careful and avoided gum trauma and boney issues- he put in some sort of posts or something which cost a lot, but, made making a crown a cinch for my dentist and totally non invasive for her. I probably didn't have to stop the ibrance- just that my ANC's are often so low, that I have to wait two weeks to restart and I couldn't reschedule last minute if they were not high enough.
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Hi all, I haven't been on for a long time now. I'm still processing the news that my tumour marker is going sky high, although my CT showed my organs are still clear. My oncologist can't understand it as my last bone scan was also stable. Normally we take no notice of tumour markers as mine have always been high and used to zig zag on the way up but now they're jumping by more than 100 each cycle. I've having a bone scan again tomorrow, although the last one was only 3 months ago. My pain has worsened and my mobility is ...well.... almost immobile, despite no change in my normal daily routine. I'm taking so many pain meds that I'm almost incoherent when I try to write in the afternoon which is why I'm writing this in the morning.
At my last appointment my oncologist told me that the Letrozole/Ibrance combo has been failing for some time, which I knew from the figures and the way I feel. As I'm on a trial for that combo we have to prove progression so that I can be removed from the trial and then he's thinking of putting me on Exemestane as an AI with Everolimus as a targeted therapy. My worry about that is that they have to start me on Exemestane as an AI but Everolimus cannot be given till progression is proven. Further, even though I've known that I'm just buying time with all these treatments, these treatments can only buy me a few more months. After that I can have chemo if I choose but it will only buy me a further 6 to 12 months. Personally, I can't see the point in using chemo to buy time unless it's quality time so I'd give that a big miss. I'd rather go out feeling something like I do now and have people remember me as a cheerful, happy soul. I'm told I have somewhere around eighteen months to live and I am at peace with that. I just don't like the thought of leaving my beautiful son but he's an adult, fully able to look after himself now.
This seems to have come along rather quickly but I was diagnosed de novo with my bones already loaded with mets so my surgeon estimated that i'd had it for at least 2 years before I was diagnosed. Those of you who know me know I'm an eternal optimist who doesn't give up easily so I'm still positive that this prognosis won't beat me!
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Hey Leapfrog, Hang in there!! You might be getting a little ahead of yourself! My onc says she has seen some really exceptional responses to Exemestane-Everolimus, and there are other drugs before chemo (Abemaciclib? Halaven?), so hopefully you get stable on something soon!!
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Hi Leapfrog,
Big hugs - contemplating progression and being in so much pain are circumstances that would try even the most optimistic, cheerful soul. It's hard to think that there could be any hope left and that things could ever get better when you're hurting and scared, but you've done it once, and you can do it again. The odds that the next treatment will work for a good number of months, years even, are not 100%, but they are not in the single digits, either. Your organs still being clear bodes well for having a good response to the next therapy.
Regarding what that next treatment would be, unless I'm forgetting something about your history, I'm surprised that your doctor didn't bring up Faslodex before exemestane and everolimus. Although it's not on the PBS list, so it would be an out of pocket cost for you, it seems that AstraZeneca would supply the first month free, make you pay for months 2-4 and then supply it free for as long as you need. I'm not sure how much it costs a month in Australia, but it might be something to talk about with your Onc (some old forums mentioned about $500/injection, which could be about $1000/month if the two injections dosing scheme is used, but I really have no idea how accurate that is). There are many stories on this site from women who got years out of Faslodex, and other than the pain from the injection itself it seems to have milder side effects than letrozole.
Beyond hormonals, there is also capecitabine (Xeloda) which is an oral chemo that a lot of ladies find pretty tolerable, which is covered under PBS.
Wishing you hope and peace and the right answers for the next steps. We want to have you around for a good long time!
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Leapfrog-nice to see you. There are more treatments to try and surely one will work. This must be so disconcerting for you. Sending love and prayers for the absolute best outcome. MJH
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Kathryn, Congratulations. Nothing like a little bundle. Enjoy her and keep posting photos. Beautiful.
Hugs Anita
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Raven,
I still have liver mets. I don't believe any have "gone away", just shrunk. I'm not sure of the number of them, but I know there are many.
I just had to get off Taxotere (after a little more than a year. Boston breast oncologist, couldn't believe I stayed on it that long. I said the longer I'm on each one, the longer I am here!). I am trying CMF next. First treatment is on Thursday. Number 7 different treatment in 6 years.
There are plenty of different treatments to try. I'm sure you will find one that works for a long time.
Lynne
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Well my trial for the AKT1 mutation has come to an end for me. I was about move forward as a single participant trial for this protocol when I was hit with a massive pain crisis caused by a compression fracture. For more details on how this unfolded please check my topic for the AKT1 clinical trial.
The nutshell version is that I have had two kyphoplasties and will be getting two weeks of radiation to a section of my vertebrae starting Aug. 20. I will also be screened for another clinical trial for which I will open a new topic once I have been accepted and have more details.
At this time I do not know if my liver had progression too but I will cross post to liver Mets thread anyway and circle back with the answer once I know
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Lynne- I am having another panicattack. My white count is down to 1.6. She took me off Taxol because my liver tumors enlarged on it as I have said before. Now all my liver function tests have gone up. and also cancer markers. Has yor white count gone down so low. What measures did you take?
I am having the liver biopsy on monday to see if cancer markers there have changed.I wish I could have just stayed on the Taxol it was working on the lungs. But I think she had more concers about the liver. Since the lungs responded so well, I think she wanted to try the Epirubicin.
Raven
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My Oncologist said dental check ups, or light cleaning only. Nothing invasive.
Leapfrog, never lose hope x
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Deborah Dx 10/3/2017 Stage IV, mets, ER+/PR+, HER2-
I feel so alone. I haven’t had anyone to speak to about how I feel that is going through the same experience as me. I have a psychologist, friends but no one that is on this journey. I have Breast cancer to the bones in my hip and spine. I take 15 mg of morphine 2 times a day for the pain ( I am allergic to all the oxy drugs). Things have been well contained with Zometa and Letrozole so far. I go to my new oncologist at Duke September 10. I have an oncologist here in Wilmington NC but just don’t have confidence enough in him and Duke is on the cutting edge.
Anyway I wake up in the morning and I feel about 100 years old I am so stiff. I don’t know if it’s the cancer or it’s just in my head since I have cancer I think I must of course be stiff or The cancer is really making me feel that way. I am second guessing everything. Am I depressed because I have cancer or am I just depressed? Am I constantly tired because of the cancer or is it just excuse to sleep and pull the covers over my head not to make friends I may not be there for? So I guess I just need some feedback from someone who might understand the same thing
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Lyricw9,
I was diagnosed with bone mets two years ago. My bone scan indicated broken hip, mets to entire pelvis, lower spine, shoulders, ribs, and skull. I was so achy I could not even get out of bed without help. My first MO wanted me to go to Boston immediately and I have a wonderful MO at Dana Farber. They put me on Ibrance and Faslodex and Xgeva. Within two weeks the pain went away and I never took pain treatment. Then 9 months later, liver mets.
I do think you need a second opinion. Letrozol has a reputation of making you achy even if you didn’t have bone mets. I was on it for a while but it didn’t work for me. I’ve been through the ringer as so many ladies here. You will always have friends here. Stay close to the boards. It’s been a life saver for me. They are wonderful.
Please get a second opinion, there are many options out there and hopefully you won’t have to take morphine. Also, because of my depression my prime care doc put me on baby doses of Paxil and Clonopine. I cope but I don’t socialize much, just do what I can. Once you get the right treatment you will feel better, I can promise you.
If there is anything thing I can write to you let me know. I have a wonderful husband who is a Radiologist and he has helped me emotional to survive to where I am now.
Hugs to you. Hope this helped.
Anita
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Raven-Breathe!! My white counts drop nearly every time after chemo. My oncologist checks it 2 weeks after my treatment (a week before my next). By the next week, it has gone back to normal, for my chemo. She says they don't do anything for low white cells, they go back up by themselves. I have gone to the ER (because it always happened on the Weekend, when the office was closed, I called the office and they sent me there)3 times while on Taxotere. I had a fever (over 100.5) each time. The first time, they found I had a kidney infection (I had a lot of pain on my right side), and sent me home with antibiotics. The second time, my white cells were very low, and I was admitted (at least I got my own room, because of it), and was given iv antibiotics for 2 days. The third time, I told them I did not want to stay over again, I was in the ER from 5pm-midnight. I was given, at 10 pm, 2 iv antibiotics. They never found out, what kind of infection I had, the last two visits.
Your oncologist will find which one will work for you. There are plenty of treatments out there.
Good luck with your biopsy on Monday.
I am starting a new chemo on Thurs (Taxotere lasted over a year). It's CMF. I hope the side effects aren't bad. Taxotere, was the worst for me so far (This will be treatment 7, in 6 years).
Big hugs!
Lynne
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Lyric-I am so grateful I found this site. It's been my only support group, since I was first diagnosed Stage 1, in 2005. The people on here are wonderful, and yes, it is great to talk to people who know exactly what you are going through. Everyone on here is wonderful!
I've been on Letrozole a couple times. I too felt like I was 100 years old (even before I was diagnosed Stage 4 in 2012, with mets in my spine, lung, and lymph nodes. Now also in my hips, pelvis, ribs, sternum, collar bone, and skull, also my liver). It really makes your bones and joints achy. I take tylenol (I can't take ibuprofen, because I take an arthritis med, mobic). I don't like the oxy drugs or morphine, they make me loopy, and don't take care of the pain. I do have medical marjuana. I get the oil, without the THC (so I'm not loopy). It works ok. I don't take it often (they want you to take it daily), only when the pain is bad. I use mostly the tylenol.
I agree, get a second opinion. I do every time I change treatments (starting number 7, different treatment, on Thurs, in 6 years). I go to Dana Farber in Boston (an hour and a half ride, with no traffic) for the 2nd opinion. Usually, the 2 oncologists, suggest the same treatments. This time though, my local, and the Boston dr, were completely different. I went with one that the Boston dr suggested. It is given once every 3 weeks, compared to the others which were every week, or every week for 3 weeks, and one week off. I get the treatment at my local oncology office.
I have my good days,and bad days. I am not on any anti-depression meds, but I know it helps a lot of people. I try to take one day at a time, and tell people I'm living with cancer, not dying from it. My husband plans lots of trips. It gives me something to look forward to. We've been together since high school (39 years, married 35), and have 4 adult children, and 3 grandchildren. They are the reason I keep going. I try to get outside every day. Even if it's only for a few minutes. The fresh air seems to help my mood, as does the sun (which we haven't seen in 4 days! Ugh!). We sometimes go for a ride in our mini convertible or on the motorcycle (it's a trike, so less chance of it falling over, and I have a comfy seat). Those rides always get me in a good mood.
Good luck on your appointment at Duke! Big Hugs!
Lynne
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