Bone Mets Thread
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so sorry to read of those who have progressed what amazes me as a newbie is how many of us had fairly insignificant first diagnosis that has gone on to bone met progression. It looks like they may have got our initial treatments wrong som
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Deanna, Rats! So sorry that those little buggers have tried to make your liver their home. I know you have an excellent MO and hope you settle on a new treatment plan that will take care of everything for many years.
Lynne
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Deanna,
I'm sorry you got bad news always hard to swallow eh? But we soldier on and hope new treatment plans work. Carol messaged me on Facebook yesterday and said that letrozole works really well on lobular cancer guess who doesn't have lobular cancer. So now I'm all paranoid about this one. Why give me drugs that don't work and promote further progression especially since it's a know fact. My oncologist said I could have ibrance if I paid the pharmaceutical company four thousand a month. Hmmmm don't think my budget allows for that one. So everything comes down to money again. Sucks. Time for my coffee enima 😳My life sure has changed lol
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Deanna, am so sorry to hear of your progression! This disease sucks!!! (Sorry for the language!). Hoping you get to some kind of new treatment plan that works for you.
Ok am putting some things together...being extremely cold, very low heart rate, high pain levels, weight loss...am thinking hypothyroidism. Thank goodness my onc is checking my thyroid on next weeks blood work up. Although I have heard horror stories of trying to get thyroid meds just right...anybody have any experience with this?
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Deanna - Damn, not what I wanted to hear. Whatever is going on in the liver could be benign but if I remember well, your TMs are reliable. Your MO is on top of things changing tx quickly. Take time to process this, it's like getting a stage IV dx all over again at least it was for me. I hope you are well surrounded to face this new challenge. Sending you love and hugs.
Wendy - I think I beg to differ. I'm not ILC and responded very well to Femara for 3 years. I was also given the choice to add Ibrance but who the heck can afford that. Breathe, Femara works for ILC and IDC.
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Gracie, unless it's the disease process itself, the weight loss would point to hyperthyroid (too much) vs. not enough (hypo), while some of the other symptoms do sound like hypo (not enough). It's good you're getting checked, as many of us do have pre-existing thyroid issues or some irregularity due to meds. I personally take Westhroid, a natural hormone med, originally RX'd by my naturopathic doc and now RX'd by my onc.
So the 3 tx options I've been given are the Triniti-1 Trial (Riboclclib with Aromasin & Afinitor (1/2 conventional dose of Afinitor normally given with Aromasin); A+A alone; or Xeloda. At the moment, I am leaning towards Xeloda, but b'cuz my onc said she somewhat favors trying the trial because she has a very scientific nature, my hubby is giving me a hard time about ruling it out. And while I like the 3-pathway approach, I do not like anything I've heard or read about Afinitor, and am afraid even a half dose could do some permanent lung or other damage. Plus, if Anastrazole failed me in the past, and Faslodex & Ibrance are no longer working, moving to a regimen using Aromasin + Ribo sounds a bit like a waste of time to me. Laying it out here, hoping those of you who either have firsthand experience with similar choices or are far more science-minded than I am will weigh in. My onc also stressed the importance of going with my gut, which thankfully gives me permission if I don't feel the trial -- which also entails a lot more travel into UCLA -- a negative, but not an overwhelming one IF I felt strongly about doing it -- is right for me.
You said it, Linda -- damn!!!
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Deanna, sounds like you have some options and have thought through a lot already. I've just heard about the Triniti-1 trail myself. Your MO sounds very in tune with you, which is great. I've made some 'gut' decisions myself and they have been right. You are well informed and will make the right decision for yourself. Are your lesions measurable? I have a 6mm liver lesion that has behaved for 8 months now.
Just got back from 6 skin cancer biopsies and dermatologist thinks they are all basal or squamous and not melanoma. MOHS procedure on my eyelid and that final biopsy had a nice clear margin and no melanoma. I dodged melanoma. whew. I was a lucky girl today. I do look pretty nasty though and the stitches by my eye bug me every time I blink. My doc said 'don't blink' ha ha
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Deanna - this is not a scientific response. I was offered the A/A combo that I refused for the same reasons you mention. That option will still be available later on. I do like your way of thinking that maybe it's time move away from HT and targeted therapy.
LindaLou - You deserve to be a lucky girl! Great news.
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Thank you!
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Hi, please forgive a non-bone met person from jumping in, but I was following Deanna's story here just now. Deanna, maybe it will help to remind yourself -- I know you know this -- that there is no one right answer here. All the treatment choices your onc is giving you are reasonable, acceptable ones. Listen to her and try to read between the lines as far as the trial. Unless you are way more altruistic than I am, your first responsibility is to yourself, not to science. Do your research and/or ask your questions, and then listen to your own intuition. I know how hard this is cuz I just had to choose a new treatment myself. As you know, you will feel much better once you have set out on your decided course.
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Thank you, SP. That really does help. It's easy to get overly focused on sussing out the best option, to the point of losing sight of what you just said -- that there really is no right or wrong answer. To some extent, there's always going to be the crapshoot element. And yes, once we make a decision, it will get easier. Thank you for reminding me of that! Hugs to you.
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Deanna, you have options! I think that's good news but can just imagine how hard that decision would be. Whatever you choose, I'll be keeping you in my thoughts and prayers!
The onc nurse looked up my history today after I mentioned to her how low my heart rate was and she said my heart rate is always right about 55 every time I go in there, she said she would let the oncologist know and if he needs to see me before my next appointment after this pet scan next week she'll let me know . But she said and now I'm kind of thinking to that maybe my heart rate is just naturally low ! Certainly explains why Lortab makes me feel like I forget to breathe !!!
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Hi hugs to you all.
I've been reading periodically to keep up. Sorry about the progression many of you are experiencing. It sucks, but once a new treatment is in place you'll feel better (mentally).
Delvzy-great news
Nancy so sorry you're here and all you're going through.
I'm busy as can be planning and organizing my DD's wedding! What a whirlwind but I'm enjoying every minute. It's in just one month! Yikes- so much still to do!!!
Will post pictures right after!
Miss you all,
Babs
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Hey Babs! Stay focused on that wedding and ignore us! But we'll take pictures when it is over. Hope you are well. Good to hear from you.
Deanna - Of the options you have been given, your gut has inclined towards a very reasonable choice (Xeloda). It doesn't rule out going back to the hormonal/targetted therapies proposed. Some time on Xeloda could potentially make hormonal treatments more effective. Just make sure they don't slam you with high dose. If you scan the Xeloda threads, it seems to me they are going with much lower doses these days.
This article summarizes the results of phase II of the trial you are being offered. You have to scroll down to Other Combinations.
Clinical Development of the CDK4/6 Inhibitors Ribociclib and Abemaciclib in Breast Cancer
The results are impressive. It's a good trial but still not worth the hassle of traveling IMO. Do Xeloda now and then, if that fails, this combination will be available outside of a trial with a lot more data and experience. And there will be other options to consider.
Wendy - I am on Letrozol with IDC and doing well. Are you on any treatment plan now?
Gracie - way to get everything sorted out!
>Z<
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Thanks Z! The learning curve on mbc is huge! Seeing how involved you all are in your treatment makes me feel empowered though!
Babs, so glad you are enjoying it all! What a great experience for you! Very happy for you and your family! Can't wait for pics.
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Gracie - The learning curve is steep and seems to get steeper and steeper. But it pays to be engaged. Go gettem.
>Z<
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Deanna oh dear, that's a hit. So sorry you have to navigate this now.
Would they do a sono to be more specific, how many lesions do they see, how large? Or they can't even tell? And what about what so many do and Dani did in getting to check if anything changed in the ER/PR/HER2? If they see something maybe you could demand a more detailed type of a test to know exactly what you got there. How are you feeling? What about CA15.3, do they check this?
Well I could tell you if you go to the liver thread, you will see lots of ladies are on Xeloda. I am not sure if it's working on Dani, the only thing is that it did not show progression the last time. She and many people have the HFS, which could be helped somewhat with creams, hers was kinda bad, but… She is actually changing the protocol for 7 days on 7 days off now from Xeloda. But Xeloda does have a good reputation of killing those suckers!! The other stuff I must say from her experience I think it was much harsher, she and many cannot do Afinitor for long, sorry, but this is what I know.
Lita how is your pain?
Lindalou yeeeh, something nice to hear. You are a lucky gal!
Babs, aww so happy that you are busy with the details of the wedding. Is your daughter in the States already? How are you coming along?
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I am posting this general audience article on Metronomic (Low Dose) Chemotherapy for everyone moving past hormonal treatments. It's an option to consider. It is certainly on my short list. Even Xeloda can be done as low dose chemo therapy.
If you want to take a plunge into the literature, here is the PubMed search.
>Z<
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Deanna, my thinking was along the line of Z with going to Xeloda for now and then revisiting the Ribo later combined with something else to resensitize your cancer to HT. Dr Hurvitz is amazing. Would you consider a second opinion at City of Hope or UCSFor elsewhere to get another perspective?
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Deanna, I too was waiting to hear how it went and am sorry it wasn't great. But like the other women say, both options have done very well for many women. Hope whatever decision you make has you feeling confident and good again.
Nancy, Yikes! All I can say is please come here often and bend our ears. That is so much to digest all at once. My heart hurts for you....
Hang in there Gracie, you've been through a lot as well. Thanks for the info on all that, it may very well help us all someday.
Hey babs! have a wonderful happy time with the wedding and YES pictures please!
Lita, I am a previous long time skier and know all about shoulder issues. They are sooooo painful and make it nearly impossible to sleep. I hope you find some pain relief soon and get some sleep you poor thing. Lack of sleep can just drag you down so fast.
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Hi Katharine,
I'm still just on the letrozole will have a new biopsy soon and hopefully this POG thing can get going. Thanks after Carol told me that letrozole only works well with lobular cancers I kind of lost it. Good to know you are in the same situation and it's working for you.
Babs so exciting enjoy every minute I never had a wedding got married at the office in Germany but I love the whole romance of it. We look forward to some pics.😊
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Wendy - Letrozol suppresses hormones but also acts directly on the cancer. It's a powerful drug and remains first line treatment for all hormonally positive cancer for a reason. Hope your complementary approaches are going forward full steam as well.
>Z<
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Wendy, I just want to add my reassurance about letrozole. It appears that letrozole is a good drug for both ILC and IDC. There is an idea among some researchers that some ILC may respond better to letrozole than to tamoxifen, but no difference for IDC.
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Wendy, I have a friend with IDC who has had very good results with letrozole. There are many other women on these boards who have IDC and are on letrozole, just like you. Your MO has you on a good treatment plan. Take a deep breath and keep going.
Deanna, I think that Xeloda will likely be my next treatment once Faslodex and Ibrance stop working. I truly believe in following my gut. Go with whatever you feel is right for you at this time, and don't second-guess yourself. Your DH will support you whatever you decide to do.
Babs, The wedding is April 2nd, if I remember correctly. The important tasks will get done somehow, and the others don't really matter. I am sure the wedding will be beautiful. I am looking forward to seeing pictures.
Nancy, I am sorry you have been through so much lately. My mother passed away several years ago, and I still find myself talking to her in my head, especially when family matters strike me funny or when I can start by saying, "Mom, you are not going to believe this one." I am sorry you have reason to be here, but as you have undoubtedly already noticed, we have a special group of wise, supportive people on this thread.
Lindalou, Six skin biopsies? Good heavens, girl, that's a lot of skin! I am happy the results are good. You deserve some good news. I'm glad your liver met is behaving, too. I keep telling mine to just go away!
My DH and I have been in Disneyworld for the past few days. We are having a great time, just the two of us. We do what we want to do when we want to do it. Talk about a low key vacation. We will be here through next Wednesday when we will go to Ft. Myers for a few days. Frigid air is pouring into New Hampshire, so it makes this nice warm weather feel particularly good.
Sending prayers and hugs to everyone, Lynne
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Cross posting...as I've said, at this point, if we can't see the irony and the black humor in it, we might as well shoot ourselves now.....
Happy days, everyone, at least I can lift my arm up this much now...Lots more physical therapy to come.
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Love it Lita
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I love it. Way to lift up your arm! You will be better soon....
>Z<
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Lita:
I admire your spunk and sense of humor. We must maintain both with our cancer marriage!
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OK ladies I have my pet scan tomorrow. I had fried chicken last night and it did not agree with my stomach at all! Ugh!!! So I'm trying to figure out what I can eat today that will be easy on my stomach . Any suggestions ? Also I am having coffee this morning with a little bit of cream although the girl at the cancer center said no because I'm not supposed to have any dairy 24 hours before but my scan isn't until 10:30, so I'm having coffee this morning and hoping that it's not going to affect it. Also she said no dairy in my salad dressing and I've always done that the day before anyone have any information on that? Because I always did salad with blue cheese dressing because there's a high-protein.
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The thing with PET scans is the day b4 they don't want u to have any carbs...no fruit, bread, pasta, rice, potatoes, OR dairy because the carbs turn into sugar in the body. For the scan, they inject you with sugar that has a radioactive tracer in it. The sugar in the blood stream goes RIGHT TO the cancer. If u ate any sugar within that 24 hr period, you might have more areas lighting up and it will look like you have more active areas than u truly have.
Always err on the side of caution. It's only for 24 hours.
They told me I could have meat, chicken, tuna, and some vegetables: onions, mushrooms, broccoli, cauliflower, and green beans only. No carrots.
Hope that helps
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