Bone Mets Thread
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TarheelMichelle, so happy to hear about your improvement on Ibrance and Faslodex and about your lowered pain.
Kendrasue, hugs. I'm new to this MBC business as well, and I don't even want to think about the day my first line of treatment fails. That being said, even if the oncologist interprets the scans to show progression and decides to change your treatment, getting three years from your first line is still pretty good, especially considering you were on Arimidex with no targeted therapy. You can now probably do one of the Ibrance based regimens (maybe with Faslodex?) and hopefully get another few years of stable or better. The fact that the scans only talk about bone is also a silver lining. I am rooting that you have a good discussion with the doctor tomorrow and come back with some great options and new hope.
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Tarheel Michelle. Great news indeed. Celebrate!!!!
Babs
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Hi Ladies,
I am new to this thread although i have been on the site for several months since my diagnosis late last year. Although I am feeling quite normal, my mets are in the liver, lung and bones. There is quite a bit for me to learn about treatment for each organ
. I am currently on Ibrance and Letrozole. I am tolerating the drug well although I haven't had my first scan since diagnosis. My bone lesions are in the ribs. There are 4-5 spots each less than 1 cm. My oncologist recommended Zometa infusion however, I later read that Xgeva may be more effective and has lesser side effects. I am wondering what your views are in regards to the two drugs. Sorry, I am sure this topic was covered in the past, but there is so much information that on this thread that I can't seem to find the exact response.
I also wonder with the lesions being small, infusions are even necessary if somehow Ibrance can keep things stable. It would be great to hear your experiences.
Thanks so much!
Thereishope4us
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Tarheel Michelle, I am SO happy to see you pop in! I can only imagine how much you needed to take a break from the boards after we lost Kandy, but know that we've missed you. It's really good to hear you are doing so well.
The skin issues on various treatments can be maddening, can't they? Very gentle masks can help BUT more active masks (ie the clay-based kind that draw) can absolutely wreak havoc. Once when I was on Xeloda, I used one which I had used happily for years only to find it did NOT play well with Madame X. When I rinsed it off, my face was bright reddish-purple with clear outlines where the mask had been. It was like HFS but on my face!! I am pretty sure the mask drew the chemo to the surface of my skin (which is basically what happens to hands and feet in HFS). I FREAKED. Thankfully it subsided by the next day but I learned my lesson.
Now I'm on Taxol with steroids, and I have a lot of heat and redness in my face for a couple of days after infusion, like big clown dots on my cheeks. It is distracting and uncomfortable. I also have developed peri-oral dermatitis and I get weird scaley blemishes here and there that take a long time to heal.
All that to say, I like the anti-inflammatory Mega Mushroom line by Dr Weil at Origins.com. It is as good as anything I've tried for all of this. I go through a lot of the mask and the treatment lotion. You might give it a try.
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Hi everyone,
Newly diagnosed MBC after treatment for stage 3. Last thing was to remove my ovaries. Then they found BC on ‘em. Crazy thing was my CT scan just a couple of months ago was good. Now it’s bone mets. Still wrapping my mind around it. There’s still a lot I don’t know. Really I didn’t know the questions to ask. I’ve been reading your posts and have started to get some ideas. Going to try the big name cancer center April 6. In the meantime I’m on Kisqali/Femera.
Some moments I feel very zen, other moments I want to tear stuff up and scream at the injustice. The amazing thing is I read your posts and you guys seem to feel exactly as I do!
Kendrasue, I am not exactly where you are, but I know how it feels to let the fear grab hold so hard you’re suffocating. We can’t control this disease. Someone on here said “don’t let it rob you of life”. I’ve thought about that so much. I’m amazed at your strength to reach out and push through the fear.
I’m kinda lost. Super scared. But you guys give me so much hope and guidance just by your experiences and strength. So glad I found this.
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Hello Thereishope4us- I've been on xgeva for one year and have no side effects to report. It's been doing a good job at strengthening my bones because I have not suffered fromany more collapsed vertebras since I started the TX.
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hi valeriaGayle and welcome here - sorry you are facing this new reality with the rest of us. i am about 6 weeks into this and I have so many of the same vacillating emotions. I did feel a ton better once I got my treatment plan determined and underway. I wish you the same sense of peace after you meet with the cancer center. Where are your bone mets
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feeling angry and scared is natural valeriagayle. But I'm sure you will gain perspective as you get settled in the routine of pet scans and bloodworks.
The treatment you're on is a good one and it can last years, there are women that have been on Femara for five years or more. Who knows what new TX they will come up with next It's good to dream and keep them hopes alive...
I hope the SE are mild for you on both drugs.
I suffered greatly during the two years I was on Letrazole and took it only every other day, to the dismay of my MO, but my 3.5cm tumor shrunk anyway, and so quickly, they could not even measure it after couple months.
Sending you a big hug!
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My onc was vague when I last saw him regarding where the bone Mets are exactly. In his defense my mom and boyfriend went to the appt and there was lots of crying.
He just kind of vaguely said, “everywhere”...
At the time I didn’t know to ask. Now I do. I’m making a list of questions. I’m usually a researcher but this has left me feeling numb and helpless. Feelings I’m ready to move past.
If you all have any tips or questions about bone mets you felt helped you or your treatment plan, I’d love to know
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Do you have any symptoms, such as aches and pains already? I had no symptoms for the first couple years so I delayed getting the Xgeva and end up with two collapsed vertebras because Letrazole caused osteoporosis.
I would recommend you get the xgeva as soon at possible to prevent the weakening and breaking of your bones due to the possible SE of medications or the cancer.
Another question to ask would be if you have lytic or blastic lesions. The first type destroys the bone while the other builds on top of the bones. Sometimes, they can't tell, but it's good to ask just in case.
If you went through a pet scan, there should be a detailed report of what and where they found, and the intensity of the uptake informs how quickly its progressing. Ask for that report and read it carefully. Ask for a clarification of what's unclear to you.
My report was dire, but here I am three years later....
Personally, I have felt horrible bone pain at times in my lower back, rib cage and in pelvis bones when the TX stopped working. When the TX work, I feel fine....no pain...although I have recently discovered that this mouthwash with steroids could be either covering up malaise in the liver area, or causing it when I don't take it. I will soon find out....
Keep on asking questions and updating us, this is a truly magnificent support group.....
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Thank you so much! Most of the things you mentioned I knew nothing about.
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Miaomix-- please tell me you aren't swallowing the steroid mouthwash?
Years ago when I was on Afinitor, I was using a steroid mouthwash and was somehow under the impression I was supposed to swallow it. My dentist (of all people!) completely freaked out when I told him. He warned me that it was harmful to bones and other things, and should never ever be ingested! There was NO warning on the label, either, but I did find support for what he when I searched online.
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Miaomix-- please tell me you aren't swallowing the steroid mouthwash?
Years ago when I was on Afinitor, I was using a steroid mouthwash and was somehow under the impression I was supposed to swallow it. My dentist (of all people!) completely freaked out when I told him. He warned me that it was harmful to bones and other things, and should never ever be ingested! There was NO warning on the label, either, but I did find support for what he said when I searched online.
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Kendrasue, I am thinking about you today while you meet with your MO. Let us know what you learn during your appointment.
Hugs and prayers from, Lynne
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hello Lulubee-thank you for the warning.
I only swish for two minutes before I spit it out. It's for managing the mouth sores caused by the Afinitor. once a day or less, instead of the four times recommended and the SE are amazing! Incredible energy and optimism due to the much needed adrenal support, coupled unfortunately with insomnia and extreme appetite. But if I don' t swish...watch out...major malaise....I found out yesterday....
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hi ladies. I’m on third round of Ibrance and Faslodex, and today got the word from my mo that I’m stable! I’ll take that!
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Gorgeous photos Lynne xxx
KendraSue.....I can see from your last post how well you're doing and how far you've come in your approach. I'm full of admiration for you because it isn't easy and a lot of people can't take advice to do what you're doing, let alone so quickly! I live completely in this moment as much as I can because it's the only moment I own and I always think that, if bad news is coming, I'll handle it then and I'll be in a much better place to do that rather than if I'd been stressing for weeks about it and had missed many moments of enjoyment.
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Gracie. So glad to hear you’re stable. Celebrate!!!!
Babs
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Happy Dance for Gracie! Stable is good!
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Gracie-awesome news! Yahoo!
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Go Gracie! >Z<
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I took all your kindest words and wishes with me yesterday to my oncologist's appointment. Lynne, I stepped into all your photos, even more beautiful knowing you were actually there. My husband drove me, and sat next to me, holding my hand, throughout the visit. My oncologist and I had a thorough discussion, no fluff. She said there has not been a dramatic change, but the reality is that, although the activity is slight, there is clearly progression. My CA 27.29 tumor marker went up a little, from always being in the 30s to 46, a "slight rise". And, there are teeny little "somethings", about the size of a dot she made on a piece of paper with her pen, in my lungs. She said they're so tiny we don't know what they are—it could be merely inflammation from something, etc. She said she's not terribly worried about that, and is going to keep an eye on it. So, she said her recommendation is that it's time to stop taking Arimidex. I had great difficulty when she said that. She said I did very well on Arimidex, and for a good length of time, and that quite often, when one does well on their first treatment, the next treatments go well. So, she said my next step should be Ibrance and Faslodex. And, you know, I became horrified when she described the Faslodex process and all I could hear in my mind was pain and more pain, and the side effects of Ibrance horrified me even more, and I think I stopped hearing her and mentally left and leapt up onto the moon. She said there's not an immediate urgency, and that we should connect with another appointment in two weeks. I imagine I will be expected to state my agreement to the new treatment at that time. But, I'm too frightened. I hate to say it, but I'm not brave enough. Is Ibrance chemotherapy? I fear I'm not courageous enough for the Faslodex shots. I'm locked in a frightful place. But deep down inside, I suppose I understand this will be my next step
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Kendasue - Ibrance is not traditional chemo and it is generally well tolerated. There is an very active Ibrance thread where you can pile on your questions. The answers will give you comfort. It's a walk in the park for some, but not a bad treatment. I would not hesitate to go that route. Ibrance was my first line treatment for 18 months.
>Z<
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Kendrasue, I'm sorry to hear that the scans showed progression, but it's good that it was minor. Don't be scared of Faslodex/Ibrance, for most people it would not mean a drastic increase in side effects. Tarheemichelle just posted that her pain actually went down on Faslodex, as she doesn't have the painful effects that sometimes AIs have on muscles and joints. As for the pain from the injections themselves, make sure you have a good nurse that heats the syringe up and pushes slowly. Also make sure you relax the injection leg and do some walking afterwards. And remember that even if it does hurt, it's a once a month deal, not a daily occurrence.
Ibrance may be technically chemo (comes in a scary bag with chemo warnings) but it's nothing like one would imagine traditional chemo. I'm on my second cycle and other than low neutrophils and feeling a little tired toward the end of the cycle I can't say I've had any side effects yet. This seems to be the case for a lot of people who have been on it for a long time. The side effect most ladies seem to experience is fatigue, but the level varies a lot. For me the fatigue has luckily not been bad enough to impact my 50hours/week job. I pray every day that it's effective and I can stay on it for a long time, because it's allowing me to live my life.
I hope it does the same for you
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Kendrasue, I know exactly how you feel. My first line of treatment was also Arimidex, and I wanted to stay on it forever. I was very upset when after just 13 months, I had progression. Not just progression in my bones, but also in my liver. I thought my life was over. I armed myself with knowledge about the possible treatment options. I suspected that Ibrance and Faslodex would be my MO's recommendation, and I told my DH in no uncertain terms that I would NOT take Ibrance. I had read about all the horrible side effects, and I was not going to let it destroy my QOL. My DH asked me to at least consider it and discuss it with my MO. My MO did recommend Ibrance and Faslodex, and he listened to all my concerns. He and my DH reasoned with me, and I agreed to "just try it for a little while". That was back in August of 2016, and I am still taking it. It has been a very easy treatment for me. My blood counts always drop from Ibrance , but they bounce back during the 7 day break. The first month they dropped way too.low, and my MO dropped the dose from 125 mg to 100 mg. That dose reduction is not unusual. There have been months when I have had to have a two week break instead of one to allow counts to rebound, but I have not experienced any terrible side effects or infections. I was tired during that first month, but my life has been pretty normal since then. I have been on Faslodex and Ibrance for about 20 months. My Ibrance does not come in packaging that says chemotherapy, and my onc does not call it that. It comes in a plastic bottle from a specialty pharmacy. I have seen good results - the tumor in my breast and chest wall no longer show on scans and are no longer palpable. My MO called it "remarkable healing". Twenty months ago I had three liver tumors from 1.2 cm to 2.1 cm each, now I have nothing but two tiny specs that appear to be cysts. Even my bone mets have shown improvement. I know that this will not last forever, but even 20 months of stability/improveis more than I had dared to hope for. No one likes shots, but if the Faslodex injections are done correctly, they aren't so bad. Please read at least the first few posts on the Faslodex Girls Thread 2014 because there are important recommendations for you that will make the injections go more smoothly, like warming the syringes, not giving them too quickly, the best way to stand, etc. Feel free to PM me if you have any questions. There are others like me who have taken Faslodex and Ibrance for a while and aren't having serious issues from it. Take a deep breath. This is not as bad as it seems.
Hugs and prayers from, Lynne
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Hi Kendrasue - sounds like your progression is really minor, though I'm so sorry to hear that it's progressed at all. I agree with the others about Ibrance and Faslodex. I am only starting my 2nd round but I took arimidex for 11 years and so far i find Faslodex to be more tolerable. I've hadthe shot 3 times now and I have no pain from it at all. Ibrance is also pretty tolerable. I've gotten a rash that was short lived and my counts held up well. I had fatigue this month but I also had 16 radiation treatments at the same time so I am hoping next month is better. Good luck in your decision!
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PS the arimidex for 11 years was after my initial Dx, not treatment for Mets
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Kendrasue-the fear of starting a new treatment regimen is so real. I have had both Ibrance and Falsodex and was pleasantly surprised at how well I tolerated them. I was pretty apprehensive about the injections, but my nurse was so skilled that it was a non issue. This is a logical next step for you which should work very nicely.
May the force be with you. Best, MJH
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Hi Kendrasue,
Come on over to the Ibrance thread. You'll find a lot of knowledge, experience with SEs, and hope. Ibrance is a doable treatment. My main SE has been fatigue. Many people do very well! Also check out the Faslodex Girls thread to learn about their experiences.
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Deana,
Thank you for sharing your story. I need to read things like what you went through to really ‘get it’ and know that there are a LOT of options for all of us with drugs, chemos, surgeries, etc. Living with MBC is not very fun, but it is doable. Thanks for the reminder that we really can live with it even after we are challenged hard from time to time. Never give up!
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