Bone Mets Thread
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Hi Karen, Many doctors do not use tumor markers at all since they are not reliable for everyone. My onc uses CA27.29. So far they seem to be reliable for me. My onc only tests them every three months. Mine were very high at dx (947) in June but were down to 167 in September. I am hoping they will be much lower next month. Of course onc says that the numbers themselves aren't as important as the direction in which they are trending.
Good luck with your second opinion tomorrow. I hope the onc gives you lots of time, provides you with good information, answers all your questions and concerns, and meets all you expectations.
Lynne
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Karen, my Onc uses the CA-15 and the CEA. Both were within normal range at dx but have lowered and are stable. Best of luck tomorrow. Keep us posted.
Amy - good luck with upcoming rads. Love that RO! I've been taking turmeric supplements since dx.
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Linda sorry but I am totally ignorant of this Tumeric. You say supplements, you mean like something like a vitamin? I did some reading, and they were adamant that it should be fresh if not it's not as effective? Should I bother? I find it hard to believe Dani would eat it fresh.
And Karen, Dani has the TM's - CEA, CA27.29 and CA15.3, for us it always appears connected with progression or regression. For many it is not accurate, you could take it for awhile maybe, till you see what the truth is for you. wish you the best!
As I mentioned before, Onco is not keen in Radiation at this point, it's just too many lesions in every area. I would like to hear from you guys if you think it's too risky to wait a few weeks till the next scans and just hope that tx will take care of it? Reasonable? He is really scared she should do it now.
Dune, what's up?
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HI all! I am SOOOO far behind on this thread. But I have internet at the new house! And almost everything is finally gone from the old house. The movers were running late, one was injured, and it took a long time to get our stuff shifted. Total chaos at the new place, but it's ours!
I have scanned the 3 pages I'm behind on but I'm too exhausted and brain faded to address anyone or anything, except Momallthetime - tumeric is an anti-inflammatory herb. It's used in Indian food (yum!) but can be taken in pill form. I think Deanna takes it. And I'm going to start trying it again to see if it will help with the arthritis.
Sorry for the selfish post here, but wanted to at least say hello!
Hugs to all,
Terre
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Terre congrats! So happy for you. Send pictures when it is together.
Good morning to everyone else...hugs, hugs, hugs...Myra
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Good morning all,
Mommal - Yes, it's like vitamin pills. Bear in mind that turmeric is much, much more effective when taken with black pepper and olive oil. Some brands include bioperine which is black pepper. I take it with a meal which includes the black pepper and olive oil. It does wonders for inflammation and has some anti-cancer properties. Check with Onc or with the pharmacist before taking it. It may interfere with other meds. Do I understand correctly that Dani's Onc wants to scan now? How are you holding up?
Terre - You made it! Congrats!
Sending hugs all around and I hope all you US gals had a good Thanksgiving.
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Thank you everyone for your advice. As I read your posts, I feel like I am starting to get to know you all and this support group is amazing to lift my spirits. It is amazing to see this bond and positivity facing such serious a serious disease. I'm very happy to see some of you are still alive and as well as you can be after 2,3,4+ years.
Kiwicat - congrats on the move. It'll be a lot of fun decorating and settling in once the initial chaos is over.
My mom gets her biopsy results tomorrow - I guess it will determine if it is treatable . I guess I didn't realize that she has had no treatment so far since original dx until the biopsy results come in and they have basically been giving her IB profin for pain which clearly is NOT working. It saddens me as I know she has been in pain since at least the summer and I have no idea how long she has known about the dx. The worrier in me worries that cancer likely spread if it has been several months and they haven't been giving her anything to treat it.
My boyfriend has been extremely supportive and since he is a chef, we will be surprising my mom with breakfast and thanksgiving goodies. Hoping it cheers her up to have us over for a few days, especially since she gets her results tomorrow.
To all - What is HER+? I know my mom is ER+/Pr+ but she has never mentioend HER and I am not sure if she tested for it. Hopefully the doctors are on top of that in case it will change her treatment.
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Momallthetime, as Terre mentioned, I'm a big fan of curcumin (from the tumeric plant) as a supplement, having used it continueual for several years. And while it's true that you need far more than you can get when eaten as a food (spice) to fight cancer (which is has also been shown to do), the amount in supplement form works great at tamping down inflammation. I like either the Life Extension brand or the one by Jarrow. You or Dani may not see or feel immediate results because it can take a few weeks to build up in your system. But once it does if you then run out or stop, you might immediately notice more joint aches and pains (the arthritis type), or at least that's been my experience. Here's a link that might be helpful: https://www.mskcc.org/cancer-care/integrative-medi...
Daughter, here's an excellent explanation re. Her2+ bc. In the past, Her2+ was much harder to treat because it can be more aggressive. But since the advent of Herceptin (and now another new drug, Perjeta), the playing field has been leveled, so a Her2+ dx isn't as worrisome. Here's that link: http://www.mayoclinic.org/breast-cancer/expert-ans...
I love what you and your bf are planning to do for your Mom. And I agree with everyone else, I don't know how you've been able to keep the fact that you know about her dx from her. It's a tough spot to be in, but you're obviously handling it very well. I would think it would be difficult to fake complete surprise when she tells you, so maybe something halfway -- like I just knew something serious was going on, or I just sensed something wasn't right -- which would account for your reaction maybe not being what it would be if it were a total surprise.
And Terre -- nothing selfish about you or your post. Many times this thread just moves too fast to keep up, but if you don't jump in, then it gets worse and you get more behind. I think it's something we all feel when that happens. Anyway, hooray that you're moved!!! Photos are much anticipated!
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I love when everyone just jumps in and answers questions or posts what's happening with them!
Congratulations Terre & Mr KCM! Hope all the little ones settle in.
I had my 3 month appt with my family physician yesterday, all my TM's are stable at CA 15-3 @ 9.2 - 9.7 and have been for 6 months and my CEA is also stable at 1.2, again for 6 months. My next bone scan isn't until January, so I will be able to enjoy the Christmas season.
However my friend with colon cancer is not doing well. She doesn't expect to see Christmas this year, she heading to hospice with week.
I have an interview on Thursday with an RN from Victoria General Hospital who is doing a study on "Living well with MBC" She hopes to publish her paper sometime next year.
Best wishes for a painfree week everyone. Take care, Cheers, Dee
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Good morning all. Lurking
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Terre,
Although I hate moving, it is wonderful when it's done, especially if you love your new home. Also a great chance to offload things you don't use or want. I last moved 8 years ago and found all sorts of things that I had no idea why I had saved them to begin with. I agreewith Deanna. There is nothing selfish about your post. Some of us are doing well, some are not. No one needs to apologize for either. This thread is all with bone mets.
Dee,
Living well with MBC should give us all hope. Thank you!
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Patty I'm a lurker too, I feel I don't have the experience yet with disease offer any substantial advice. So I read along and every once in awhile I poke my head in. Such a brave smart bunch of ladies it blows me away continuously . I do have one question though is it normal to have bone mets biopsyed?
Have a wonderful day all and Daughter you are an angel. My daughter is twenty and living far away I don't see her very often. What you are doing will make your mother so happy I guarantee it.
Wendy
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They didn't biopsy mine, but I was stage 4 at diagnosis, so they knew it was the same as my breast tumour. And I think it was a case of it looking like a duck and sounding like a duck therefore...
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Wendy - It's not standard to do bone biopsies. When I was dx'd with bone mets, my Onc had scheduled a bone biopsy to see where the primary cancer was coming from because nothing showed in the breasts. Further investigation showed a large axillary lymph node breast that was biopsied and that showed the pathology. She then cancelled the bone biopsy. But in some instances where there is no response to tx, they may request a bone biopsy to check the pathology. At least that's my understanding but maybe others have more info.
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My bone met had a biopsy which came back different than my original breast tumor. The bone met was triple positive while the breast tumor was ER/PR positive and HER2-. Upon retesting the breast tumor, it came back triple positive changing the course of treatment for me. My Dr. said the lab that initially tested the breast tumor did not have the technology to test the tissue block correctly. I was also stage iv at initially diagnosis. Hope this helps.
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Thank you Wendy! I have all the guilt that I don't see my mom enough. Up until these past few months, I came "home" only a few times a year even though I only live an hour away. I see this whole thing blowing up in my face as this secret will create a rift in my family as I cannot possibly keep it from my brother that I knew all along and he didn't. I also wouldn't put it past any of my family members from finding this thread and figuring it all out. It also saddens me when her mother will find out as she has already had to bury one daughter to this disease.
As for me I'm getting ahead of myself, I know, but I am likely BRCA2+ and am actually fully on board with the mastectomy idea, enough to join support groups in my city, speak at them etc. I read a somewhat pessimistic article last night, but helpful, that it isn't so much as raising awareness but we need a cure as such a high percentage comes back as MBC. I'm taking that to do everything in my power to prevent it. My PCP is very much against doing a mammogram for me as I'm not 30-35 and I really want one just to be safe - then I'll wait until 30. I just want to be sure all is OK as my aunt was only a couple years older than me when she had her dx. I'll likely lurk other threads on here but if anyone has heard any advice over the years for preventative measures feel free to send links my way.
GG - glad everything is stable and you don't need to go through more testing until after the holidays.
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Wendy,
I am not sure what protocol is with respect to the decision to do bone bopisies. Clearly, the area of suspicion has to be easily reached to do one. I had a bone biopsy.which confirmed the met,after imaging raised suspicions. As txmom mentioned, the met can have a different hormonal profile than the original breast tumor.
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My onc immediately ordered a bone biopsy when my cancer returned. She said even though my hormonal status was probably the same, you can never be 100% sure and that information is vital to know when determining treatment. In my case, my status remained the same.
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Like Lynnwood, my mo ordered the biopsy right away. Her thought was that it was important to know the hormonal profile, since a change from original dx, would have totally changed treatment (I have been on an AI since dx). And like Lynnwood, hormonal profile remained the same
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When my bone mets were discovered my MO immediately ordered a CT guided bone biopsy, taken from the sternum. She wanted to make sure that it was the same profile as the original, which it was. But if it wasn't, it would have been a different treatment.
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Very interesting thanks ladies, I will be bugging my oncologist about this one. I feel like I always have to be ahead of the game and do the suggesting to the doctors. I was sent home after the last appointment with another prescription for. Tamoxifen and see you in the middle of January that's it... Since some of my scans were inconclusive my husband is sceptical that I even have mets. I did have a lot of injuries as a child to my back. He just wants to be sure and I'm not feeling so sure lately. Dee you are getting good care by the sounds of it , I moved extra away from my home to get better care and I feel like it was a waste of money and time.....
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Thanks for all the good wishes after my radiation, I am feeling a lot better. I am not having any back pain at all now, nausea gone and diarrhea much better. I have taken turmeric for about a year now and it really helps the stiff joints when you first get up. December will be 4 years since diagnosed stage 4 to start with, I consider I'm doing well. Prayers for all and have a wonderful Thanksgiving. Marilyn
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Happy Thanksgiving to you, Marilyn, and all the other Americans. I miss Thanksgiving! It was a favourite holiday. But at least we get the Queen's birthday as a holiday here. Great news on your radiation, and congrats on four years, Marilyn.
Dee - hooray at good TMs.
Thank you everyone for the good wishes. I spent the day cleaning the rental place; it's not that dirty, but it's huge with lots of windows to wash. Just have to mop the tile floors throughout the house (Saturday's task) and we'll be done. Landlord wants the place back a day early, so I told them I would agree if they were ok with us not doing all the edging. The house is polystyrene blocks (like leggos) with a thin concrete skin, so you can't weed whack next to the house. All has to be done by hand. And they said yes! So, dodged that little task.
Hoping to get caught up on this thread over the weekend.
Hugs to all,
Terre
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Wendy, I do think that I am getting extraordinary care over here on the island. My friend Susan has been diagnosed with colon cancer & treated at Vancouver Coastal cancer clinic. She has to wait much longer for testing that I do & she is not given the same type of support that I am. We wonder if there are so many people in Vancouver? I with no family history, was booked for a colonscopy within 2 weeks, her brother & sister, who had a sister with colon cancer had to wait 8 months. I cannot complain at all about my level of care.
Take care all, I have company for a couple of days & then my interview for "Living well with MBC" Hope I'm able to show them what that looks like.
Take care all, Cheers, Dee
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Can't wait to see your video, Dee!
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Good Morning All,
Deanna, Thanks for the Memorial Sloan Kettering site. I can't take tumeric because of my kidney stones, and GERD, but that site is full of great information so maybe I can find something else.
Dee, Will you be able to share the video when it is all done?
Terre, send pics too when you are settled. I looked at a kitten yesterday. Almost got one, thought of you.
Happy Thanksgiving to the US gals and I must say I am very grateful for all of you. My best to all.....
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Good morning ladies,
Dee - YAY on TMs and looking forward to seeing that video.
Marilyn - 4 years! congrats and happy you're feeling better.
Wendy - You have every right to ask questions and get what you want. Push them if you have to. I have to add that when I had the femoral rad insertion, they did a biopsy of the femur which confirmed pathology.
Deanna - thanks for the link, it's very thorough.
Aurora - how are you doing?
Patty - still lurking? Hope that energy is still with you.
Happy Thanksgiving to all my US friends!
Today is Xveva followed by pampering (hair colour & removal of awful hairs around the mouth)
Sending hugs all around
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Wendy
I dont know how second opinions work in Canada. But it was one of the first things I did when dx. My MO really supported it and the process helped me to trust my care from local team. I also had bone biopsy with one week of being seen at an er for pain and pathological crack on pelvis. I do think this is so much easier when you have faith in your treatment team.
I am also a bit of a control freak and try to get as much info as possible so I am asking question and even requesting things all the time. My MO is used to this and is very patient. I get alot. of information here and I also follow oncologytube on tumbler.
Best of luck to you. Happy Thanksgiving US women. I travel through the snow to Missoula to enjoy the holiday with family.
peace to all
Mary
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Happy Thanksgiving to all my friends south of the border. Travel,safe where ever you go. I was reading something on Facebook about breast feeding. I have another quick question how many of you with children breast fed? They told me when my daughter was born in Berlin that if I breast fed my likely hood for getting breast cancer would be greatly reduced. Hmm I was just wandering if I'm an anomaly ?
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Mary yes I'm a bit of a control freak to. I'm already on the second oncologist that everyone raves about . I am beginning to get a rep....but I will bug her on my next appointment.
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