Bone Mets Thread
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Patty!! Hi.....how are you doing?
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I am back in the hospital so not doing so great. Beginning to feel better been here a couple days. Just really want to check in and see how y'all were doing. Really miss youfriends. Love you hugs and kisses
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I just wanted to shed some light on a thought about the actual clinical studies and note exactly how much really goes into them. First note, No pharmaceutical company would ever unblind a study. I recently had worked for a distribution pharma corporation (Fisher Clinical Services, under the umbrella of Thermofisher Scientific) one of my main customers was Johnson and Johnson and Pfizer was another account I worked closely on and I saw the actual billing and requests for the
medication\placebos. This study for Ibrance has been on going for over 5 years if not more (which is when the account switched to mine) and I saw how expensive the trials are first hand. There are Many clinical sites and locations that these are being held. These studies (especially blind) cost millions of dollars per location to get this medicine out and prepared in the needed blister packaging for patient consumption. These wiling patients that participate in these blind studies risk their lives, so we may benefit from these medicines. Many, many have died waiting to see results, they took daily readings from patients and followed them closely. When they didn't get the results they wanted, they went back to try different variations after people continued to risk their lives, not really knowing what possible side effects could even be coming their way. But they do it for us to have a chance to have this gift. I realize cancer makes us all angry, but if it was not for these long blinded studies. They wouldn't be able to give anyone more time. They just recently released ibrances sister form because they are having so much success with palbociclib and ibrance, that they broke off into another sister trial for another type of this medicine with a few tweaks after years of testing ibrance. That is also being released as well, it was taken off of the trial Paloma-3 (phase 3) Highly successful. But through another company, Novartis, working simultaneously with Pfizer and sharing information after phase I was completed at a 2:1 ratio. (One patient placebo, 2 patients actual ibrance). This is called ribociclib, Kisqali. I know the project managers that work on these studies and I am going to see if I can get a listing of release points and locations and dates to see when Vancouver is listed, or if it is listed. If legalities prevent me from getting the list, I will still ask the project manager to look. I know Singapore china has listings for distribution in 2017. There are many studies that are still on going that will be completed and that is when they will officially release the medication in that country. Which is still purchased through the American pharma companies. Regular pharmacies do not have access to this medication because of its limited availability and expense, if you're not on a trial And being given the medicine you have to have a doctor that goes through many many steps to get it through the specialty pharmacies. Its not a prescription you can have written and off you go to cvs. pharma companies Are bogged down with SOP's (Standard operating procedures)and they are strict by law here in the U.S. that is why it must purchased through a special pharmacy, because it is that big of a deal. It is considered a first line of treatment, but I believe as long as you are taking the hormonal therapy, you can add in the ibrance because they work hand in hand. I am sending prayers Wendy that Vancouvers studies are almost completed and are on that listing for release. Bless you all. Have a restful Sunday everyone. ~M~
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Patty~ I am glad to hear you're feeling better. But also sad that you are in the hospital. That's never fun. I am going to send happy thoughts and strength your way! I hope soon you will be leaving the hospital to make your way home. Be good to yourself and stay rested. Nice to meet you, I am however sorry it's because of why you are also here on this website. Sending big hugs ~M
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Patty hi!! So good to see your post! Hope you feel much better very soon
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good morning all!
Wendy, Femera & letrozole are the same drug but it's the fillers that seem to be giving all the bad SE's. Dr S is very willing to demand the brand name for you. I was on letrozole & it was horrible, like I said. You're right it's not fair that they won't let you on the drug, I hope this will change soon.
Dianarose, the trial that I'm on, everyone gets the drug, this is a dosage trial. The arm I am on is 21 days on/ 7 days off, the dosage starts at 125mg then 100mg if you can't tolerate the higher, down to 75 mg. They want to find out if it's better with the week off or taking it every single day.
Babs, I can't believe the wedding is a week away! Enjoy!
Patty, good to see you, tho not happy to hear that you in the hospital again. hugs
hello to everyone else on the thread, there are so many now, sad really when you think about it, but love all the support that is here.
Heading out to catch the ferry, so I will be gone again. take care all, cheers, dee
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GG27- are some of the other women in the trial taking it without the week off
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Chirps, I get Zometa infusions every 3 months via my port and have never had any SEs. Like Lita, I heard hydration was key and I always hydrate before, during and after. The nurses have always given me IV fluids after the influsion, too, because I was told Zometa is hard on the kidneys, thus the needed hydration. I also asked for 30-minute infusions as a precaution and the nurses are happy to accommodate me.
Letrozole is the generic of Femara, and because it's a generic, has more fillers than the brand drug. I have some joint pain and stiffness with Letrozole (TEVA brand), but I'm doing much better at this point than I was on Anastrozole. My understanding is there are many generic manufacturers of Letrozole and the number/types of fillers they use varies. TEVA is one that supposedly has fewer fillers.
Good to see you pop in Patty.
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My petscan came back with widespread skeletal mets. Spine, pelvis, humerus, femur... largest is on T3. I have my follow up appointment on Tuesday. After reading some devastatingly scary articles on-line, I wish I had come here first. Life expectancy and quality of life is overwhelming me right now. I know I need to live one day at a time, but this back pain brings me back to my unknown future. After reading your thread, I fee like that I might have years left instead of months. Do i have time to get second opinions or should action take place on T3 immediately? My pain feels like a constant burn.
THank you
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Tessio, I'm no doctor but it seems you need some powerful chemo right now, as soon as possible. Maybe Xeloda. My wife's 100% ER+ turned to triple negative and she's now on full strength Xelodo.
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Tessio, I was also dx'd with diffuse and extensive bone mets, and I was in a lot of pain at the time -- the burning pain you describe, as well as all-over aching. You will need to get on some meds quickly, but there are also non-chemo options that can also be extremely powerful, although assuming you are pre-menopausal, they will need to be combined with something to shut down your ovaries. But I wanted to assure you that widespread bone mets is not nearly as life-threatening as it may sound. I've been living relatively pain free (after we took care of some fractures I had initially, that it doesn't sound like you do), as well as got on the right meds and in the beginning the right pain meds until the healing kicked in. So please don't panic! There's every chance your bone mets can be put to sleep, so to speak, and you will do well for a very long time. The life expectancy for bone mets-only gives us time for new and better tx options to be released, including some recently approved and some currently in trials.
Please be sure you have the right oncologist -- ideally someone who treats a lot of metastatic breast cancer in women similar to you. I use both UCLA and a local onc, and I swear -- thanks to BCO and the wonderful network of mbc thrivers here and on FB -- I know more about the course of mbc and our meds than my local onc (as much as I love him for other reasons) seems to at times. I know it's hard when this is all new to you to understand how crucial an onc's role can be, but whether it's being up on the most recent drug approvals, or a fleeting look that ensures hope rather than hopelessness (a look I've seen cross my local onc's face that took months to forget), it's very important to find an onc with a specialty in mbc -- not just an onc who also treats everything from colon cancer to melanoma -- because there's just no way they can be as dialed into mbc as an onc who specializes in it 24/7.
Hi, Patty! Sorry about the rehospitalization. It must be exhausting if it's s similar scenario to your past episodes -- the vomiting and severe dehydration. Hope you get better and out quickly!
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Tessio, quote I ran across from U.S. National Institute of Health:
"Breast cancer patients with bone cancer only metastasis have excellent clinical outcomes."
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gosh daring Patty, the universe needs to give you one very long break. I hope you get sprung soon. Have you already done the move to your own place? I don't see how you possibly could of....I just went through a move an although we had a lot of help I am just now starting to spring back a little. Feel better.
Dee, nice to see you and yea to good news! We love hearing that.
Michael and Lita, referring to way back regarding my shoulder, here is a weird thing....After I climbed the ladder, which I agree micmil, is VERY unadvisable I took a very small shot of NyQuil that night to get some good sleep. I woke up the next morning with NO shoulder pain whatsoever! go figure. A few days later it is a little achy but nothing near like that night. I also believe the Arimidex causes tons of bone aches and pains.
Tessio, I think you will feel much better with a plan in place and reading with all the ladies here!
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Patty so glad to hear from you but wish you weren't in the hospital again. Get out soon!!!!
Babs
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Patty - praying for you. i was hoping for better news, but so very glad to see your post.
Micmel - interesting insights into how these drugs get tested and released internationally. hoping letrozol holds wendy stable until these procedural issues resolve.
>Z<
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Patty so nice to hear from you😊 Hospitals suck I'm sorry you are stuck in there again. Just think spring is just around the corner new growth , flowers, sunshine especially sunshine. This thought gives me purpose and hope. Get out soon💐.
So I went for the first time back to my dragon boat yesterday, I was very afraid I wouldn't be able to keep up ...but I did. In fact they put me as stroke at the front of the boat to set the pace. Little harder but the best view , it was glorious when you do some sort of strenuous excerise I can forget I have cancer for that time. Just focus on what I'm doing. Forget about letrozole.
Dee so weird that you mentioned the lips thing. I've been having the dryest lips I've ever had. What a dumb SE.
Z thanks for thinking of me big scan this week and I'm petrified. Funny how your brain works at least for me I was so positive with the bone mets that I could drag it out for years. Now with the liver involved I've entered the cancer funk and I can't get out. I know what a bummer I am lol.
Babs I hope we get to see tons of pics from your daughters wedding😊. Would love that.
Wendy
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Wendy~ You're no bummer! Anyone would feel that way. I had a marble sized tumor in my liver in the beginning, I was lucky and they removed it. You're liver is amazing an organ. I am sending prayers that where this spot in your liver is can be controlled. The location is also key. Mine was on the outest most portion of my liver and never impeded any function or even any blood work. My liver surgeon told me, if this tumor is controlled you could live decades! Then they got aggressive on me and took it out. I was out running yesterday and I just screamed out loud alone "why?"!!!!! And I was angry!! And I still am. We are allowed to be angry it's ridiculous that we have to feel this way and worry everyday about progression and side effects. You're not alone !!! I put a call into that project manager. I am going try my best, my best, to see this release listing. I don't know if I can because of legalities but I'm going to try. I hate to see someone worry because I am a worrier also. Sending hugs of strength and prayer bless you all ladies. ~M~
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Just a quick question I have been on Letrozole and have the morning aches and pains (I take it st 10pm) should I ask my doctor for Femara as it has less fillers therefore less side effects? I also had extensive mets to every bone in torso and back of skull and 14 weeks on Letrozole the mets are stable to healing with normal tumour markers
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TYVVM to all who are sharing info about which bone med they use and what if any SE they notice. I'm still keenly interested in further input. I'm glad to hear the positive stories and tips, also...
Isn't everyone who has "bone mets," being treated western med, taking a medication for bones?
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Chips, I have a single bone met but am not being treated for it. I am recently diagnosed and it's a single met, the plan is to radiate after chemo and surgery. Perhaps, if I had pain, they would.
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Delvzy,
I am on Letrozole now for 27 days. I have a very weird pain just below my ribs on the left side. Extremely sore to the touch. It seems to be in the muscle or tendon. It is possible the Letrozole is causing this pain? It's really making me concerned.
I tried to find some info on the Letrozole blogs but nothing similar. Any input would be greatly appreciated from all.
Chatsworthgirl
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Wendy -
I have liver mets and bone mets and no plans to die of cancer. Don't let the stats mess with your head. You have a very smart strategy and, even with the constraints of the trials and your medical system, you will beat this.
I have a sneaking suspicion that it may be better to the CDK 4/6 inhibitors later in the progression of treatments. Sometimes I wonder, in hindsight, if I should have tried letrozol alone first and saved Ibrance for a later treatment.
I believe that either Micmel will figure out how you can get Ibrance or they will release a CDK 4/6 inhibitor in Canada for second line treatment at just the right time for you.
Hang in there through scan time. Thinking of you. Whatever happens, there will be options, especially since you have wonderful intuition and you are called to look beyond the standard of care.
Micmel - thanks for trying to figure out what is going on for Wendy! you are awesome. Please do that!
Regarding Femara and the multiple generic letrozol options, people switch between the brand name Femara and the generic letrozols and do see improvements. It's not necessarily the brand name drug that reduces side effects, some do better on different generic brands. I switch to Teva brand letrozol, I've had some improvement, but I tweaked some other things as well. I don't know whether Teva is really better or not for me, but it is worth looking at the different manufacturerers. The theory is that we are having an allergic reaction to the fillers and fillers vary from brand to brand.
It is useful to monitor the Femara thread and understand the experience and strategies of people who are Femara or letrozol alone. For me, the most difficult side effects come from the letrozol and include muscle and joint pain and fatigue.
Chatsworthgirl - that is not a classic letrozol symptom, in my experience. I would report that to your doctor ASAP.
Chirps - I had one bone met, but mostly mets to the liver. Docs showed no interest in my bone met and, sure enough, it seems to be gone due to the systemic treatment. No medication for the bones. There are side effects to bone meds that you want to avoid if you can get away with it.
>Z<
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I wanted to share with those of you who know Carol (LovesMaltese) that she is in the hospital and dealing with a lot of pain right now. She hasn't been on BCO that much in recent months, mostly because the ups & downs and losses here had been really difficult for her. But I know she stays in touch with some of you and she is always concerned about MomATT, Dani, Wendy, Patty and others. Please keep her in your prayers. And thank you, Lynn, for reaching out to me this morning, so that we could together figure out what was going on.
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Deanna thanjs for letting us know about carol please let er know she is in my prayers thanks
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I had a consult with a new oncologist and he tested my tumor markers again. My CA 27.29 is down from 204 to 139 in the 7 weeks since they were last tested (5 weeks on tamoxifen). Although the tests were done at different labs, this sounds good to me. Everyone agrees the standard of care is lupron, letrozole and palbociclib, but they think it is not unreasonable for me to try to continue on tamoxifen if that is what I really want. We will test my tumor markers again in three weeks to see if they are still going down aggressively. Although it is nice to be in charge of my own decisions, I am slightly nervous about going against the standard of care and hoping that the close monitoring will give me time to switch to the standard if need be. I'm kind of thinking that I'll have the standard of care in my back pocket for when tamoxifen starts to fail.... My anxiety is through the roof and I've been having trouble eating due to stress. I wish there was some way to know if my tumors were shrinking!! Do you find that out by a comparison of your PET or MRI to a new scan? He said the goal was for my tumors to shrivel up (sounds excellent!), but that when its in your bones, you don't see the tumor the way you do when it is in an organ.
I think I am supposed to start the bone strengthening med but forgot to ask him when! Is it safe to get tooth cleanings/cavities filled while on the bone strengthener or should I try and get my tooth cleaning in before starting?
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Deanna, Please give Carol my best and tell her I'm thinking of her. Thank you for letting us know.
Patty, are you back home?
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Fight...get the dental work done first. That's what I've always been told.
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Fight4Two -
I've avoided the bone strengthening drugs because of the side effects (ONJ) but certainly there is a place for it if you feel you need them. I don't know anything about dental care on bisphosphinates because I have been able to avoid them. I have limited bone mets... just one actually.
In general, the approach that makes you feel comfortable is the right one. I think it is impressive that the doctors are considering your choice of tamoxifen and supportive. It means they think it's a good option to try.
The fact that you are worried about Tamoxifen would generally suggest to me that you should not go that route, but I suspect you discount tamoxifen because it was your idea and you don't trust yourself. In fact, these little instinctive ideas we have are likely the right path. Bone mets are slow moving. You have time to try things, see if they work, tweak if needed. Given that you have the support of your doctors, I would go for the tamoxifen, personally.
The way you tell if it is working or not is comparing a scan in 3-4 month with your last scan. Just be aware that MRI's are a whole lot more sensitive. They find more stuff and make things look pronounced. They are not directly comparable with other scan methods, but a good radiologist can still do the comparison.
I think you are doing great. The main thing is to be personally comfortable with your choice. Prayer or meditation or whatever your favorite way to check in with your self/spirit is the most effective way to the right decision. What brings you peace?
>Z<
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Fight, you can have normal cleanings and fillings while you're on bone strengthening drugs. What you can't safely do is anything that impacts the bone, such as an extraction, so it's imperative that you get any necessary dental work taken care of before you go on one of those drugs, to minimize the risk of ONJ. So you might as well get your teeth cleaned as well. I dragged my heels for many months about doing Xgeva, but the improvement in my pain level and healing once I started it was nothing short of astonishing.
With bone mets, healed lesions will still show up as damage. Usually a bone scan (or PET/CT) will show the degree of activity or uptake compared to previous scans. Mets that are inactive or "sleeping," so to speak, are what we hope for.
It sounds like Tamox has already kicked in and is doing great! The issue with staying on it is that it's primarily intended for use in pre-menopausal women, and with mbc they will want to shut down your estrogen, in which case it may not be as effective in the long run. But I'm not a doctor, but that's kind of a simple explanation. Your new onc can no doubt explain it much better.
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Hi Ladies,
To all of you newly diagnosed ladies, I'm sorry you're here, but glad you have found this wonderful site. I have been living with bone mets since Dec. 2008. I haven't been on the bone mets thread for quite a while but here I am after 4 months on Ibrance and Letrazole which resulted in extensive bone mets progression. I should add though to anyone wondering, I did get 5 years out of Faslodex!! I'm bummed to not have gotten at least a little time on the Ibrance regiment, but my MO seems to think I have used up the Endocrine Therapies.
I am having 10 session of Radiation to T7, T10 and the left hip which started last Thursday and am now having all kinds of wild pain but especially to my shoulder which is not being radiated but has mets to the humeral head. They had me putting my arms up above my head for the rads and I think it may have caused problems. Today I told them they have to find another way to give me the radiation because my arm can't go up anymore. They managed to cradle both arms in support devices and tomorrow I'll see the Radiologist (she wasn't in today and I didn't want to see anyone else). I also struggle with lymphadema in this same arm. The shoulder is throbbing even when I'm sitting still and forget it if I move it!! I'm anxious that the humeral head may have a small fracture? I'm on a Fentanyl patch and Tramadol and that isn't helping much. I'm praying for the sweet relief of sleep even if it's only a few hours before my night/night meds wear off!
I'm so thankful you ladies are here!
Susan
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