Bone Mets Thread
Comments
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Thank you for sharing Mara. Patti showed us one way to do this with real dignity. Rest In Peace
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Mommal - I hope surgery goes well for Dani and that you find the right surgeon. Let me know when you write that book, I'll have some input for you.
MO just called. I will be moving onto Fas alone. The clinical trial with Ibrance and Fas is closed. The progression of axillary lymph node mets is what mostly triggered the tx change, MO is not overly concerned about lung nodules. They are too small to be biopsied. We can't exclude that they are mets but they also could be benign. We will monitor them and see how they behave. I will be visiting the Falsodex thread shortly. All in all, I consider myself very fortunate to have to move on to a second line tx after 3 years. I had a good ride on Femara.
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Wendy,
I am new to the board being recently dx with bone mets. My prayers go out to you and your family. I have CAT and Bone scan scheduled 2/22 and 2/24 and pray for no or minimal progression...every time I have scans I get anxious/nervous...
God bless,
Ronnie
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Hi MomAllTheTime! How is Dani doing?
I wish I could drive up to BC and wring the necks of the people running the trial that Wendy was on ... it sounds like you are ready to join me! It's a bit far so I am sending them some loving kindness vibes and see if they get some sense and pull their heads out of their ... by their own accord.
How are you doing?
>Z<
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Rest in peace Patti , I hope you are somewhere wonderful.
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LindaE, I am glad you have a treatment plan now. I hope you have a long run with Faslodex. It has been shown to be quite effective even without Ibrance. I have had an easy time with Fas although I do also take Ibrance. I hope to stay on this combo for years, but we shall see. You will find very helpful information in the opening post of the faslodex thread. If you follow all the suggestions, you shouldn't have problems with the injections. I did have a sore butt with bruises and lumps with the first round of shots, but nothing at all since then. I suspect that I didn't relax my leg enough during that first round, but I did have a different nurse that time, too. Hopefully, those lung nodules you have turn out to be nothing to worry about. I have read that benign lung nodules are not uncommon in the general population.
Momallthetime, it is always good to hear from you. Keep us posted on Dani's surgery. As I tell you every time you post, you are amazing.
Lynne.
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Thanks Lynn - I checked the opening info/guidelines. Does a well padded butt make it easier lol! I hope we both remain on these txs for a long, long time.
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Linda faslodex alone worked for me for a whole year no side effects at all was really great. Would have loved to continue for a couple more years but wasn't meant to be.
So now I'm on the fifth Letrozole pill and I'm petrified it's not working. I was told I would have a scan in two months which to me seems really a long wait to know if something is working? The liver mets have also hit the family hard and that's the worst thing for me. My husband is a basket case ,I have to find a new way of looking st this or it will do me in.
Wendy
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Thank you Wendy. My sister came over for the week-end and I never saw her crying as much. She never shows her emotions, so in a way I'm glad she let it all out. It's hard to see the collateral damage on her and my niece. I'm so close to them. I'm just starting to wrap my head over this progression. I wish I had progression in the bones only, but we don't get to choose. Letrozole is very powerful, it kept me more or less stable for 3 years. SEs were almost a walk in the park. I wish I had the magic words to take this stress off of you. On the upside, your liver met was caught early and an action plan was put in place without wasting time. That's what I'm telling myself. Two months will be long but your MO seems to be on top of things. I wish you a good long run on Letrozole, those little pills are potent. I'm here if you need me. You can pm me and rant all you want.
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Wendy, I am sorry that you and your family are having a difficult time dealing with the news about liver mets. It is completely understandable. It is a shock to learn that mets have spread beyond bones. For me, it was like entering into a new phase and different stage of mbc. The good news is that you only have one liver met, it is only 1cm, and you feel good (no new symptoms), right? Many people experience good results from treatment. Sometimes the met disappears from scans, sometimes the met remains stable for years. I realize that it is hard to be optimistic, but I will be optimistic for you and send good vibes your way. Although two months sounds like a long time to wait for scans, I am sure that your MO wants to allow enough time for the treatment to start working before doing scans.
LindaE, I am glad that your sister was able to visit for the weekend. I know you understand how she feels, but I also know that it is hard to see her so upset. In spite of everything you are going through, you still take your time to reach out to help others here on these boards. You are a gift to all of us.
Linda and Wendy and everyone else experiencing progression, you are all in my hearts and prayers. This disease shows no mercy and there are no instructions that we can follow to get through this. It is difficult to face these setbacks and painful to see the impact they have on those who are closest to us. Remember that everyone here understands what you are going through, and we are all here to help you through the bad times and join you in celebration in the good times.
Big (((hugs))) from, Lynne
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Wendy, we went through exactly the same feelings. How many lesions are there? Is it on one side? Are they going to treat it? It definitely adds to the burden, but it's not the end. Far from it. A lot of people are doing quite well for a long time with liver mets, and many got it obliterated.
What's with Neulasta shots instead of Neupogen? This time around Neupogen did not work, her numbers went down to 0.25,with Neulasta it got her numbers going, today it's at 33, crazy huh? But she is feeling much better, although all the other #s are still on the crazy side.
Simulation today, rads to the lesion below T1 (in the disk area) next week. Surgery was for the bone and is out of the question for now, she cannot be without chemo for now.
I am considering getting her scans done in a private setting, the drawback is RO may not see it immediately, but the Center she is getting her scans, reports have been negligible words like smaller, larger, the same as last..., so how could Onco make a reasonable judgement call if there are almost no sizes of lesions, Onco goes by report she does not know to read the Images.
Everyone be aware of these scan reports.
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LindaE just reading back now, regarding the nodules, would they do an MRI? what about a biopsy? Could a/t have changed? It hurts to see people we love going through tough times. It's so special that you had your sister visit you. I am so sorry you have to deal with this extra monster now. Wishing you good vibes!
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Raising a glass of rose champagne to all my metastatic sisters...FU Mr. Cancer!!! You won't spoil our Valentines Day. I haven't drank from these crystal glasses in years. Wedding gift from 28 years ago. Got to start using the good China b4 I go. Make the moSt of the time we have.
My pin says, "stupid cancer"!
Cheers to you all for fighting this bastaRd.
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i don't drink alcohol but cheers to you with my Coca Cola
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Lita - Raising my glass as well!
Mommal - I know what you mean about those radiologists' reports. Lung nodules are too small to biopsy. Good idea on MRI, I will bring it up.
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Lita, Toasting along with you. Beautiful picture, by the way.
Lynne
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Greetings; I have recently discovered that I have two spots of cancer in the bones; one in my neck (C4) and one in my left hip socket. I was diagnosed with Stage IV breast cancer 21 months ago, and in 2008 had Stage III breast cancer. My question is: how long can you live with cancer in your bones? It sounds quite serious to me. Can anyone share their experience?
I was recently taken off Ibrance and Faslodex "because they weren't working," and just finished my first course of Capecitabine and will start Zometa next week.
Thank you for any information.
A Worried 60-year-old
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Worried - I am not sure where your cancer presented before, but cancer in the bones is generally less aggressive then other organs. People with bone only cancer tend to live for years and years. Radiation can often take care of bone mets that are causing pain. Zometa is a great drug. You might consider completing your diagnostic and treatment history, it gives us context for our answers. It's one of the reasons BCO conversations are more substantive than other boards, IMO. Cancer is complicated and context is everything.
>Z<
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Lisa love the picture you look so beautiful, champagne was my favourite or it used to be lol. Now it's kale smoothies yuck. However awful this cancer crap is and we all know how awful that is. My capacity to love has changed drastically, and I really feel love in my heart for each and everyone of you. While I'm still fighting for my rights to certain drugs and this will continue most likely a few more weeks. I did manage to fill out an application for the "POG" program that is run out of the Vancouver research arm of the hospital.. POG or personalized Oncogenomics program. Cancer treatments are usually chosen for us based on what has been previously given to other people with the same type of cancer. This study is about trying to customize a treatment for each individual persons cancer , this is known as personalized medicine. I believe in the USA an equivalent idea is the Greek test. So that's something positive I don't know yet if I've been accepted by crossing my fingers. Last year they took 700 patients this year they are taking 3000 it appears to be making a difference. I think we all should be doing this on day one of diagnosis.
Thanks Katherine, Linda and Lynne for your kind words it all helps. Linda sorry about your sis always really hard. We need a hug emojis..
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Wendy - Love the greek test idea .. Go Girl! You are getting over the recent massive punch in the stomach extremely fast. Based on the false alarm in December, I know I am going to be a weeping heap on the floor for weeks.
>Z<
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momallthetime- words fail me when I think of what an incredible advocate you are for your Dani. Holding you both in the light as you face treatment of that #@%$ spine lesion.
Linda- I may be joining you very soon on Faslodex. Have scan on Friday. Here's to a long run on it.....
DCjoslin and Ronnie- I think Z nailed it when she stated that bone mets are generally able to be stabilized for long periods of time!
Wendy- I had 2 or 3 small liver mets at time of MBC diagnosis that disappeared after 3 months of Ibrance and Letrozole. Standing by for scan on Friday which I'm thinking may show progression necessitating the switch to Falsodex.
lita -enjoyed the lovely photo- you are rocking' it ,sister! Use the crystal and china and every little pampering thing! I have decided to sell a lot of my fancy stuff. Don't want to store it or dust it, but leaving my girls stuff more meaningful. When I next have a glass of red wine, I will toast to all of my MBC sisters, and have a special moment for Patti S.
Sending love and hugs to all from very snowy Maine, MJH
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Wendy that's just a great opportunity. What does it take to get into such programs? Could it be done in any state? How are you doing in the storm? Are they doing any local treatment for you
MJH thanks so much for your support.
Zar i have a feeling, but you would get up from the floor in no time, too much research to be done!
All ladies, do you have the CA15.3 marker taken? How accurate has it been for you? From what I understood this is one marker that may show if treatment is working, not that markers are ever really accurate and for sure not for D. But in the last few months it was coming down, and just last week it went up again. A few points.
Simulation done, rads next week for the spine.
Lita, raising the bottle right back at you. Love the picture.
Dcjoslin...all I could tell you, is that definitely one has many opportunities with bone mets, the less the better of course. But it's years of being able to deal with it. It depends what kind of the tumors you have, what drives the cancer etc...many people get to a "clean" mets fast others it takes longer. Some mets get radiated, some mets get watched, some disappear with systemic treatment. This is a great place for warm support and ideas. Take good care.
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hi all,
I knew that when I took a break from BCO that I would come back to lots of news. Progressions, transitions & some happinesses, I apologize for not being here for all of you, but I needed a mental break.
I'm doing ok, tired from Ibrance, but still chugging along on cycle 9. Really low numbers this time, they asked if I wanted to start it because my neutrophils were at 1, but I said yes to avoid another trip to Vancouver the following week. I hope I don't get bumped down to 75mg as I feel that 100mg is probably the right number for me. If my numbers are still low I'll just ask for another week off.
take care all, even though I don't come here often, I do think of you. (((hugs to all))) cheers, dee
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Hi Dee ... Great to hear from you. Get those counts back up!
>Z<
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Mommal - I have the CA 15.3 taken. It seems as if it useful for me as it doubled since Oct. That marker went down after starting tx and remained stable until last Oct.
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Cheers!!!
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Dee, you were missed! Thanks for checking in. I'm happy you are able to handle Ibrance even with low blood counts. Do you have a scan coming up soon? Hang in there and again, so great to hear from you.
Amy
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Dee great that you checked in. Hope you are doing well. Do they at least give you the Neupogen shots? Or you give it yourself. Neutrophils are low. Best wishes for you to pull it through.
LindaE thanks for the info, always waiting for the next scan.That's how she feels that she eats to make it to the next scan.
There is leaving life in between, but it's constantly being interrupted.
Just found out Insurance does not wanna cover for the emergency Neulasta shot. Did you ever? Anc 0.06 WBC 0.25, are they crazy? So they will pay for a long Hospital stay? Well, with the Neulasta even she ended up in the ER, because Neupogen was not working for her. I wonder how much that ER will cost the insurance, it could have been much worse, but by the time they finished all the work up, she did not have to stay at the Hospital. Onco's office said they will try to fight it.
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If it's okay, in answer to your question of what it looks like on film, here's a copy of my last CT scan showing my Stage 4. Look at my left iliac wing, which to my way of thinking looks malformed because of the cancer.
bone mets.
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Hi all. Just lost a very old and dear friend today to breast cancer. She was diagnosed about the same time I was in 2007, but hers was much worse. She was in remission too for about 7 years, but hers came back a few years ago, and she progressed quickly. Am just kind of numb. She was so incredibly strong. And so brave... much more so than I am. She went proudly without wigs, and sometimes even without hats, and never even bothered to get foobs after her mastectomies, and had no reconstruction. She wanted women to see that she could and would live her life without it all. Her name was Gaye.
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