Bone Mets Thread
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Chatworthgirl I have been on letrozole for about 28 days as well and the other day I had very bad stomach pains. I phoned the nurse line here and she said take some Advil ( which I didn't) and see if it persists. If it goes on more than a couple days go to ER but it went away . She said 6% of patients on letrozole have stomach pains.
Deanna please give Carol all my love I am sending her all my good vibes and love.
Z you've done it again , it's so weird how on some days the only person who can truly lift your spirit is a person who shares your hell. Thank you😊
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Deanna please tell Carol I'm praying for her
Patty. Are you feeling any better?
Bab
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Deanna, please send Carol my best. I agree with you about the Xgeva...very effect for my pain and my extensive bone mets.
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Susan ~ I just wanted you to know I am keeping you close in prayer. Just wondering what dose of the fentanyl patch they have given you ? Sometimes increasing the doseage may help a little. I am getting a lymphedema pump for my arm at no cost. It's called Connie cares I believe. You fill out the website with your name and some information, I had a call the next day and they are coordinating it this week through my doctors. Have you tried this to help you? Have you tried it at all? I have not and ,The woman on the phone says you use it twice a day and she's had patients have some great results and I'm willing to try anything to help the awful parting gift of a mastectomy. I know how painful that lymphedema really is. Another trick my pallative doctor had given me is 5% lidocaine ointment in tubes and I apply it whenever I need to. Which can be four or five times a day. She said it's all topical , and it won't harm the lymphedema. Maybe give it a try. Do you have a pallative cAre doctor you see regularly, they are incredibly helpful. My best to you Susan for relief. ~M~ I'm also so sorry that you didn't see success with ibrance.
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Chatsworthg I get pain in my ribs and I am now stable with normal tumour markers after 12 weeks on Femara , Chrissy one of our Aussie ladies who has had ned bone mets for 9 years said that she had the same when her mets were healing. Do get it checked out but it does sound exactly like the pain I get. I have been feeling quite stiff and sore on the Letrozole so switched to the Femara brand tonight. I do feel a little nauseous but that could be my imagination or the very large hot cross bun I just ate lo
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Deanna, thanks for letting us know about Carol. I've been wondering where she's been. Please let her know she is in my thoughts and hope she is pain free soon. Ugh, cancer sucks!
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Thinking of Carol this morning.
>Z<
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thinking of carol also
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Oh my!! Deanna I am speechless. Carol? What happened?? I know she said much was going on here for her. But what happened?? Carol is one of our oldies. Thank you so much for letting us know, if there is a/t I could do please let me know. And please send her our love.
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Wendy Do you have a copy of what you signed, it doesn't have a part where it says - if deemed necessary the study doctor could find out which capsules I am taking. And they would tell your doctor.
And what if we all sign that it's not right for them to put you at such a risk. Like a petition.Maybe if you could get a lot of signatures on the petition we could scare them away. Maybe if someone knows a lawyer and kinda word it in a certain way. Seriously, I think we could do something. Maybe Bestbird could help? It's really not right, if it's already approved in your city and just because they are playing games you should jeopardize your well being. Maybe we could find a way. I know someone that had a similar problem and due to pressure that trial had to unbound the info for her, her life was in real danger.
I am so angry I am shaking. Yes, I understand what MicMei said about how phase I works, but I don't like it.
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MicMei that was incredible info. Thanks so much.
Dee so happy for you. Thanks for sharing, everyone likes to hear good things.
Kimberly welcome, sorry you have to be here but you have all these wonderful ladies to be with you.You got the lymphedema after radiation? That's so scary. What can you do to keep it down in that area? In another thread someone is having a real problem with the lymphedema in her thigh.
Jensgotthis what a wonderful trip. My girls were there, it's unforgettable. Your son will love it. Working hard sounds great. Now you will have your reward. Thanks for thinking of us.
Perky2020 hope you are doing well.
Chirps so sorry. Yes your head will spin for a while. What treatment were you put on, that will be the treatment. Re: radiation. From my DD experience they will only radiate if it hurts you somewhere. Chirps maybe you are thinking of Xgeva or Zometa? Check these out. Yes most people go on it. It supposed to protect your bones.
Nancy you are incredible. So sorry for such a hard time you are going through. I think you made an excellent choice in getting that 2nd opinion.
Tessio start making your schedule. You kidding, you've got so much to do. Re: the T3. No you don't have to run. It's more if it's debilitating you, then they usually radiate.
Delvzy so happy for you.
Babs waving at you.
Pattyp cheering you on!!!!
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I have not forgotten about Wendy and I am trying to get my hands on the trial regulations. But of course since it is Canada, I am being told that project manager, the Canadian one, has all the time lines and complete release dates of blinded studies still running.(which means legally it's the Canadian laws regulations that have to be folllowed along with ours) He did say canada is being very strict with the the way they enforce the line of treatment specifications . Meaning, if It intended for line one treatment only , they will usually only use it for line one. I have called the distribution coordinator to see exactly how many trials are still on going and what the time frame is for the ending of the exsisting phases there. The medicine is available in Canada he said. What was the reasoning your onc gave you for no ibrance Wendy.?The distribution manager wanted me to ask you. I am going to keep digging. Hang in there Wendy. Warm hugs for you. ~M~
I asked him about the possibility of unblinding a study due to a patients wellness, and he said they never shut them down unless a large ratio of the patients as a whole unit are having the same overwhelming negative effects. I will keep you posted on what I find out. I am not giving up
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Thinking of you Carol
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Delvzy,
Well I guess I need to follow the two week rule. The pain is diminishing and it may be that I strained the tendon or muscle - been doing a lot of work outside and I am known to do stuff i shouldn't such as picking up small boulders lol. Perhaps the letrozole makes it worse?
I have been having insomnia. Taking it at night. As of today I am starting in the AM instead to see if my sleep improves. Any thoughts on the AM or PM would be appreciated.
Chatsworthgirl
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Omg I am so touched by all your help I cannot say. I was told that because they are refusing to unblind me that I wouldn't be eligible for the drug. That's it just no no no around every turn. Just basically that I would have to wait till the end of the trial which could potentially go on for years or pay four thousand a month. Frustration is the word here. Momallthetime and Micmel thank you
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Wendy~The project manager I spoke with asked me two things. First thing is, how many doctors have you seen about getting this ibrance ? How many oncologists have you spoken with about this? Because the treatments of letrozole and ibrance go hand and hand. He suggested going directly to the company to see if you can access the assistance program, since you're having a hard time getting it. No less paying for it. He said the big pharma companies have assistance for the medication, especially stage four. Call them, Pfizer Canada, if you can't get the number from google. I'll see if I can get it through him , maybe he can at least release that. He says it is availabe in Canada, but there are still several areas and phases still going on. Are you actually apart of this study now ? Are you receiving placebo? Is this trial occurring at your doctors site? These are all questions he has asked me. So let me know when you can and I'll keep digging. The second was I know its Vancouver, but can you isolate a zip code or area code as far as location is concerned where this study cannot be unblinded and may be years till completion? I want him to access the information on that site specifically to see how long we are looking at with this clinical trial and what phase it's even in. Did they tell you what phase it wascurrently in ? How long have you been seeing this doctor? Sorry so many questions. Gotta narrow somethings down.
Keeping all close in prayer ! ~M~
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Chats~. I am wondering that your pain is imflammation , you might be one of those people who just react to it differently than others. Have you tried to take Claritin like for a week straight to see if you notice anything change? I take it everyday , I take anastrazole, and my joints used to howl with pain and irritation. That worked wonders for me. I took that along with a 5 mg Percocet right with breakfast every morning. Helped tremendously, the Percocet, I adjusted to and I never felt tired from it. Just make sure you eat first. I like to ty to keep things at low doses. I function much better. I take my anastrazole around 800 which is an hour after the ibrance, almost always with dinner. I hope something that you stumble onto here will help you ! ~M~ Or like my doc told me. Pain sometimes can equal success.! Means the medicine is doing its job.!
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Hi ladies. I just found out im stage iv to bone. Looks like Er and Pr negative. Dont know about her status. Thank you for being her
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Micmel, good advice. I forgot about Claritin.
Melmcbee, so sorry that you have to be here. It is completely mindbending that so many of us went through the entire gamut of treatment and yet still wound up here. Question. how did they find out it's er and pr negative? Biopsy? My onc is assuming I am still er and pr positive since that's what I was at the outset. Sure hope he's right and that I am taking the right drug.
Chatsworthgirl
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melmcbee, sending you warm hugs and a thought for you. I have stage four also in my bones in a few places and today I jogged 5.5 miles. It will be ok. They will find the right medicine, take one day at a time. This is a good calming place to be. Take a breath and realize, it will Be ok. Bless you. ~M~
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Micmel so I only spoke with my oncologist and the trial nurse and she extra phoned me last week to tell me again how I'm not going to be getting it. I was receiving the placebo while I was on the trial however it was my oncologist Dr. Christine Simmons who said this solely on my blood work and that I never needed a break. Since they won't unblind it I don't know for sure. I have been off the study now since January . I will try and find a number to call and see what I can do. Thanks so much
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Wendy~ It might not hurt to get a Second opinion, I can't imagine if you had qualified to be in the study blinded or not, that you must have met some kind of qualifications, to even enter the study at all. The guidelines are just that! My first thought would be if this oncologist is bound to this study, and you're sure you have received the placebo , the numbers would Be unaffected in your blood work anyway. So it would make sense to actually give you the ibrance already knowing it could be effective. So now you're only taking letrozole alone? Is that what they are only giving you as a treatment ? I think it might be worth a trying to consult another oncologist, that isn't apart of that specific group, see if you get some different information and answers. Trial nurses are only for that study that they are running at the time.
Different doctors may mean different access or availability. Don't give up. Find a doctor that isn't involved in that particular study. There are oncologists that the studies have finished.
Did the trial nurse ever mention what phase it was in? Sorry for so many questions, I am just trying to figure this out, for the next time I get a hold of the project manager again. Hang in there! ~M~ remember always holding you all close in prayer! If there is anything you do not want to answer or do not feel comfortable, I completely understand, I just really would like to be able to see if I could help in any way, And I just want to make sure we have explored any and every way possible for you to get this medicine
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Thank you ladies. I did have a biopsy. My onc appt is Tuesday. What doo i need to ask. What is the normal treatment for er pr neg.
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Mel - Ibrance and letrozol has been the treatment du jour these days for ER+ breast cancer. You may be offered a new CDK 4/6 inhibitor that just came out. (Ribociclib is the drug, forget the brand name) It will be interesting to us to hear what they are telling newly diagnosed patients these days. We're still waiting for the first person to be treated with ribociclib to show up on these boards.
I do not see much difference between the two, both do the same thing and are probably equally effective. Some difference in side effects ... do you prefer gastric distress or low WBC counts? We face unpleasant choices here, but many do well for a very long time.
Please let us know how the discussion goes with your doc.
With just bone mets, this is likely controllable, but a royal pain in the posterior as well. Hang out here and these ladies will teach you the ropes.
Welcome,
>Z<
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wendy. How frustrating. Hang in there pulling for you.
I am home and getting stronger every day
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Patty - Thank you so much for the note. I pray the worst is over and you only get better from here. Please drop in whatever is going on.
>Z<
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Zar leave it to you, what a warm welcome
Melmc sorry you are here, but this is for sure the best bunch of ladies with brain and heart. I don't know all the questions you need to know. But HER status is very important. Oncotype if it's applicable. And you could listen what Onco has to say and then decide. You could ask us then, and of course do all the research you can. Yes, ask for a copy of the report. Always ask for copies. You could always ask for Blood test copies, or if you get it at a Portal, you good there. Always, ask for scan CD's. For those you have done already, if you don't have, you could call the place you had it done and ask them to prepare it for you. If you do this every time, when you need it for a 2nd opinion etc...you won't have to run around.
Chatsworthgirl I'd think that after all these years, and having mets, you would deserve a new biopsy. A lot of times there is a change in status. What good reason did Onco say you cannot have it. It's a very reasonable route. Good luck.
MicMei great detective work.
Wendy let us know after you call.
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Patty. So glad you're home and stronger!
Babs
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Good Morning All
My MO talked to me briefly about ribocilib ( Kisqali) , but I am not a candidate for the drug. It can cause heart rhythm abnormalities such as QT Prolongation. I have an abnormal rhythm so it is not for me. Right now it is prescribed with letrozole, but the Monaleesa 3 study is evaluating it with Faslodex.
Babs, are you getting excited about the wedding?
Patty, glad you are home and getting stronger.
Melmcbee, Momma gave you good advice. Depending on your HER status, many MO's are using Ibrance and letrozole or Faslodex as first line treatment.
Momma, How is Dani?
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Micmel it was a phase three trial. Yes all I'm getting is letrozole and I would love nothing more than throwing those pills in the garbage. I will ask to be switched to Femara as per Dees advice and I will continue to go after the Pharma folks too.
Patty so glad you are home and getting stronger have to love our poor bodies eh?
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