Bone Mets Thread
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Hello ladies
Today my wife went to her follow-up appointment post surgery and we got results back from the biopsy they performed on the bone met they removed. I have a couple of questions for y'all, just out of curiosity.
When her primary tumor was biopsied, she was strongly ER+/PR+ (more than 90%). The biopsy from her met came up ER+ 70% and PR negative. Doctor said the important data is the strong percentage of estrogen receptor and to not read too much into the progesterone receptor being negative as bone tissue is not easy to biopsy and therefore leads to inaccurate results as a whole. I am just wondering if any of you was told the same or is aware of this being factual. Could this define the trend for other mets in the future, towards a lowering of the estrogen/progesterone receptor amounts?
Daniel
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Hi Daniel,
My initial Stage 1 results were ER and PR positive, and the biopsies from my kyphoplasty (bone) and thoracentisis showed breast cancer cells with both with the same results. I was never told any percentages. I have no idea if the percentages lower or change as the time goes on. I'm 6 years into this stage 4 diagnosis (13 years since stage 1) and have not been told anything about it.
Good luck!
Lynne
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Hi Daniel,
I had a biopsy done on my femur met, and it was surgically removed in May 2018. The femur met pathology report read hormone receptors 90 %; the primary breast tumour surgically removed January 2016 was 100 %. I asked my MO about this difference and she said that bone biopsies are difficult and you cannot expect to get accurate results specifically from bone tissue, so in my case this difference is not considered significant, which I think supports the information you received.
I hope your wife is recovering well.
Best wishes,
Meja
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Daniel, my bone met biopsy had a lower ER% than my Breast tumor biopsy too, it seems this is not uncommon.
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Thank you guys for taking the time to reply.
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How are you doing Lynne? on the CMF? no neutropenia? What exacly is in the CMF. how long will you be on it?
Raven
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Hi Raven- I am doing ok. The side effects of this chemo are so much better than the Taxotere was. My hair is growing back a little. Still no eyebrows or lashes. Of course it's growing in the areas I could care less if it ever came back. LOL My white cells dropped both times when I went for blood work 2 weeks after treatment, but they came up the next week when I had my chemo. I've had 2 so far. The second one I was still a little low for one med,and they lowered the dose for it by 25%. Side effects were even less after that treatment. CMF is a combo of 3 meds -
- cyclophosphamide
- methotrexate
- fluorouracil – usually known as 5FU.
The first one is in the bag. The other 2 are given as an injection, into the iv line. It's about a half hour longer than Taxotere was. I've lost my appetite though, and am losing weight (which is not a bad thing, I've lost 50 lbs in these past 6 years, and I could stand to lose 50 more!). It's driving my husband a little crazy though. He keeps asking me what I want for dinner and I said just get what you want, and I'll eat it. I'm basically eating just to live now. I think I've lost my sense of taste a little. My stomach growls and I don't feel hungry. I know that is a side effect of one of these drugs. I will be on each chemo or treatment I do until it's not working anymore. This is treatment number 7. Every 3 months my oncologist has me do CT/bone scans, and if there are new tumors or the existing ones or lymph nodes have increased in size, I switch to another one.How are you doing? What do they have you on now?
Hope you are feeling well.
Lynne
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Lynne, I could never understand the concept of losing your appetite until it happened to me on my original tx. I had no interest in eating, no appetite, and food didn't taste good anyway. A tough-love nurse told me "You don't have to like it or want to do it. It's your job now." Somehow thinking about it in those terms made it easier. If I found one thing that I could stomach, I'd eat it for days. In one case that was cottage cheese with pineapple. Another time it was plain spaghetti noodles with butter. Your body needs the fuel. Sending you prayers that this combo works for a good long time.
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Hi Lynne,
I am getting very weak after 4 months in this game. I have also lost weight and have no appetite. Starting getting back pain. All of these side effects are listed as side effects. I have an extra CT scan coming up on the 27 or next week. y new doctor wants to see where I am am now. My tumor bio markers have all gone up and my liver function are also all elevated. i Think I took a serious back slide on the EC treatment where I had to inject myself 7 times with Zarario. They are growth factors and also help the tumor grow...I am sick of this. I hope this week breakfrom both drugs givesme some energy.
Raven
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Friends,
I had genomic testing done this week, and thought I’d share the info. in case anyone else wants to pursue this option. The test is done via a basic blood draw, and it’s called Foundation One.
https://www.foundationmedicine.com/genomic-testing/foundation-one-cdx
Has anyone else had this done?
I’m excited to see the results. This will enable my onc to select the next treatment without all of the guessing of which one will work.
Hope this is helpful.
Laurie
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I had Foundation One testing but they used tissue from my biopsy rather than a blood test.
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Raven-hang in there! Just eat. I'm not hungry (no nausea), but I eat to survive. I eat my cereal in the morning, but the rest of the day I just try to eat something. Usually it's only 1 other meal. I'm hoping your scans come back that the chemo you are on is working. If not, they will find you another one. Praying it's working. Tell them all your side effects, they can give you something to help ease them.
Jaylea-I usually have a yogurt and a banana as my go to. I did that for a year on the Taxotere, where my mouth was a mess with thrush, do to the extra steroids I had to take. My stomach growls, but I'm not hungry. So strange. I know that it's time to eat when that happens, and usually grab a bagel or a piece of fruit. I've lost 50 lbs since it came back stage 4, 6 years ago, I still have at least 50 to lose (I'm short), but this is a heck of a way to do it. Thanks for the prayers!
booboo-Thanks for the info on Foundation One. I had the BRCA tests done when I was first diagnosed Stage 1 in 2005. My father had 3 aunts pass from breast cancer, and his sister (my aunt) was diagnosed 6 months after me. The results came back negative for BRCA,, but they said there was obviously some gene out there. I have 3 younger sisters, 2 daughters, a granddaughter, and 5 female cousins ( and their daughters) that would benefit all them. I will ask my oncologist about it (or the PA, or the nurses) next time I'm there, on Thursday.
Closing the pool today, but opening the hot tub back up today (too costly to run both, with the a/c too, in the summer). The sun finally came out today, but it's windy and cool. Fall has arrived. Can't wait for the leaves to change. My favorite season!
Have a great day everyone!
Lynne
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Muddling,
Yes, they tried to use tissue from my tumor, but there was not enough left to use in the test. Hoping the blood test will give good results.
Laurie
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Lynne,
Fall is also my favorite time of the year, so I’m with you! And you live in my favorite state...NH! We love it when we go to Maine every summer and go through NH.
Hoping all of my Bone Met Sisters have a good day.
Laurie
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booboo1, I hope the blood sample works as well too. Maybe better. I think I'll do one of the 23 & Me tests (or whatever they are called) too for overall genetic info. Not for my benefit really, that ship has sailed. However, as research improves maybe some day years from now they can say "she had this and that combination of genes which led to this cancer" and they can look at my child or future grandchildren early on and intervene with future science if necessary. I can hope.
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Daniel86, responding to your question a few days ago.
First, adding to what your MO said, I think that 70% ER is still considered very strong and the decline from 90% has little if any impact on her prognosis.
Second, I freaked out when I learned I was PR negative, and a lot of the folks I told clearly were concerned. But my MO was emphatic that, at this stage, it doesn't matter. I did a ton of research online and found a study that showed PR negative was relevant when Tamoxafin was the treament but not when AIs are used.
I've noted that many women on the board who are doing very well shifted from PR + to PR - at metastasis. So I've finally calmed down about it.
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Penny, thank you for taking the time to reply.
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andi-67, hi I just Ed wanted you to know that your post to Cassidy was such a needed inspiration to me! Thank you for taking the time and giving hope:
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andi-67, hi I just wanted you to know that your post to Cassidy was such a needed inspiration to me! Thank you for taking the time and giving hope:
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Hi Chef47-I just happened to check in tonight and just saw your post. Thank you - it means a lot to me that I can give you hope. I remember joining these boards several years ago when I was absolutely terrified, and seeing posts from women who were 5-10 and even more years out from diagnosis and living relatively "normal" lives and those gave me something to hold on to! Hang in there.
XO
Andrea
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Our beloved friend Pattypeppermint, Patty H., passed away 9/26/18
Her husband has been texting me.I'll cross-post in In Memoriam, Insomniacs, and bone mets.
Hootie-Hoo dear Patty. Rest in peace.
Madelyn
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Madelyn, this is so sad... please send our condolences to Patty's husband and family too. Thank you for letting us know. She'll be missed.
Sincerely,
The Mods
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Hi fellow Bone-Mets sisters,
I've come here today for some advice, some support, maybe just someone to talk to, who understands my situation.
Some background:
I was first diagnosed in 2007 at age 31 with Stage 2B ILC. Did chemo, chest radiation, Tamoxifen.
Diagnosed with bone mets to the vertebrae, hips and pelvis in 2012. Had my ovaries removed, went on Femara, more radiation to the back and pelvis.
Late 2017, I went on to Faslodex for 7 months. Then in May this year, when it became clear that the Faslodex was not keeping the disease under control, I started the Afinitor/Arimidex combo.
Unfortunately, I developed pneumonitis which is a less common side-effect of Afinitor, and can no longer continue on that treatment.
My general health is very good. And nobody would even think I'm sick just by looking at me. I still enjoy walking, hiking, working out (had to give up running because of the mets to my hips) and still even surf. I still work full-time (although I'm lucky enough to work from home as I'm in IT), and pride myself in delivering just as much work as my younger, healthier colleagues.
In short, I love life.
But now, my oncologist has suggested that I start on Xeloda. And I've meditated and prayed on that for about 2 weeks now.
I am 99% sure that I'm going to decline. I've never backed down from a challenge, nor am I scared of side-effects. I just feel that the decline in quality of life will far outweigh any benefit that Xeloda will ever be able to give me.
I don't have any children, but I do have the most wonderful, supportive partner, with whom I have discussed this, and she supports my decision.
Has anybody thought of just stopping treatment altogether?
Kind regards,
Janine
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Janine,
I'm not at that point yet, but I have thought about when that time does come. I did turn down Procrit, I didn't like the side effects mentioned on their website and decided the side effects outweighed the benefits. You have to make your own decisions about your care, after all, it's you that has to go through it all. Even with all the support in the world, it's still just you that has to go through it.
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Hi Janine,
I need to be brief but wanted to respond to your post. There will come a point when we all must think about stepping away from treatment as eventually the benefits are minimal but the impact on our QOL is high. Having said that, I don’t believe you need to be afraid of Xeloda. I was on it for some time and it was very tolerable. There are ladies who have been on it for years and manage quite well. The most common issue is hand foot syndrome but that too can be minimized by playing with the dosage.
There is a very active thread called “All About Xeloda”. My advice would be to reach out to them to better understand what you are likely to deal with. And remember that you can always stop - the side effects will reverse.
In my case, we were not 100% sure it was working and so we switched to Faslodex but I anticipate that at some point I will go back on Madame X.
Pat
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Hi Janine,
I share your fears and feelings about therapies that seem at times worst than the disease. I have been on xeloda for the past four months now and contrary to the typical side effects response, such as hand and foot disease, described by many women on this board, I have had almost none. Just fatigue at times, sensitivity when I walk, but no peeling and cracks. But I don’t know if the TX is working. I will find out in a few weeks when I will get the results of a pet scan. The BW indicates that it’s keeping the disease at bay, but needless to say, as we all know TM are unreliable.
So, in my opinion and experience X is relatively easy to take, and there are numerous cases of women that have been on it for many years, which is what I hope for myself and everyone else.
You could just try it and see how your body reacts to it. One of the precautions I take is to make sure I have enough food in my stomach, and so far no nausea, vomit or destruction of my digestive system.
Whatever you decide I wish you only the best!
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Thanks Mods,
I posted this on Patty's Facebook page:
Sending love, prayers, and our deepest condolences from all Patty's friends from bco. Always in our hearts.
(pink background with red hearts)
I'll text her DXH later today.
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Thank you so much for taking the time to respond, Miaomix, Pat and BigPeaches!
I will head over to the "All about the Xeloda" thread, and chat to the sisters there. Honestly, I had no idea that some people do not experience the horror SE's of Xeloda.
Pat: I love the "Madame X" reference! :-)
I have also made an appointment with my onco (can only see her on October 12), and will discuss it further with her too.
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RIP Patty.
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Bone mets girl on Zometa, how often do you get the Zometa. I was rediagnoised and had first doese may 30 2018, then every 4 weeks after that. Today the onc says every 3 months. Tha´s why I am asking?
Raven
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