Bone Mets Thread
Comments
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Z yes I asked the same thing what about an X-ray or an ultra sound she said i wouldn't have a date for an ultra sound sooner than the 16th anyway and an X-ray wouldn't show soft tissue issues.. also she wants to keep it apples to apples comparison for the ct scan.
Deana I haven't actually started the ibrance after I finished my chemo in Sept I was on nothing for a bit had a scan all was quiet and then she suggested let's start letrozole so when we get the ibrance you will be all set. My insurance provider was fighting with Pfizer.
This is all extremely frustrating I think she put she on chemo to get me well again and had nothing else. She said ibrance could be an option once we know more from the scan I told,her I will never ever take letrozole again. This is my second time and after each time I get progression . It's like letrozole makes my cancer worse
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Wendy, that is so frustrating!!! Why inthe world they would run you around like that is just beyond comprehension!!! Hoping you get some answers too on the change of meds.
Z, so glad you are home safely!!! Praying for great news for you!!!
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Wendy these are miserable people. I am always thinking it's not like i'm asking for a waitress to take care of paper work, phone calls etc... this is ALL they do they in day out!! what a bunch of losers. Does anybody give a damn at all? So sorry.
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Unbelievable Wendy! I think they should have to spend a day in our life, I bet that would change their attitude real quick! I do think that you should get that pain looked at sooner rather than later, I also want to remind you that it doesn't necessarily have to be cancer. I had a disc herniate about 10 years ago and it was pressing on the nerve channel. What awful pain! I had surgery and woke up in recovery completely out of nerve pain! Yay! It was a fairly easy recovery and then no more pain. You need to demand an MRI immediately. They made me wait 4 months. Nothing else told them what was really going on.
Hugs and prayers,
Claudia
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Wendy,
The link is under Femera not the generic name..
Ronnie
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Oh my goodness Wendy! The way they treated you is nothing short of disgraceful, not to mention incompetent, thoughtless, uncaring and just plain inhumane. I really don't know how you managed to do that with bone mets. I wouldn't have been able to even get there the first time and I know you must have done that out of sheer determination as, with bone mets, it's beyond us, that kind of thing. We really don't need that sort of carelessness to happen to us. Is there someone you can make a complaint to? I'm not normally one for making complaints over anything but whoever did that needs to be given counselling on how to treat Stage IV cancer patients. I'm so sorry that happened to you. I guess your poor body is now trying to recover from it. Sending you a great big, very gentle hug
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Wendy - I keep thinking about you ... what if it is something else .... and what if that something else that is exacerbated by the chemo. Is a second opinion an option? You have good questions about chemo that deserve an answer.
Is there a waiting list for being scanned? It's possible that if you can get a second opinion that says the scan needs to happen yesterday that alone could improve the process.
It just seems a bit early for cancer to return given that you were doing well and cancer markers are not showing anything (I believe?) ... cancer is not my first thought when I hear that you are in pain. I'd be comfortable with chemo if I were more comfortable with the decision making process, discussion etc.
I am repeating myself. I will hold my peace from here on. You have been navigating expertly for quite some time and you will make the right choice.
Hugs, peace and strength.
>Z<
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Z I know where you're coming from but I have no choice. I did try and get a scan of some sort and was told in no uncertain terms that Nov 16th is the first date available. My onc is just worried that it's my cancer being aggressive again like last April. If the chemo stops the pain then I guess it was cancer if it doesn't then either this chemo doesn't work for me or it's not cancer. I know I'm depressed big time right now I can't do anything but sleep all day. I crawl out three times a day to walk my dog and that's it. Nov 16th seems like a long time away. They did do a blood test I could phone tomorrow and find out what my levels are that is at least something. I'm feeling very defeated I was doing so much for my health and it didn't make a bloody difference. Blah
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Wendy - As I would expect you've got the facts, and you are dealing with them. Knowing this happened before helps me understand your oncs advice. I have so much respect for the way you accept and deal.
Not knowing what is going on is absolutely the hardest thing to endure. I can't imagine a better way to deal with it than sleeping and walking the dog. That is not defeat that dealing. If you told me you were organizing a bake sale I would have serious questions about your state of mind.
I am very interested in how you get yourself through the mental house of mirrors these next two weeks as we will all be there at points. Whatever the scan says you will deal with it, there will be a plan.
Until then ... how's the pain? Do you feel the fatigue from depression, or illness? Any other symptoms?
Very concerned about you along with everyone on the forum.
>Z<
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Your quilt and your photos are inspiring. Wonderful and uplifting.
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Wendy, I totally agree with Z! You are coping in the way you know how. You are much stronger than you think. Hang in here with us!!! We are all pulling and praying for you!!!
OK ladies I have a serious question. You know I have this one mets on the back of my head, and it is causing horrible headaches, that are lasting three and four days at a time. I have in the last couple of days decided that part of the problem maybe the pillows that I’m using. So I’m asking you ladies that have headaches or have skill Mets,
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Gracie I have no idea but I am concerned about the pain and impressed with your problem solving . Definitely look at different pillows.
>Z<
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GracieM it could so be either. You should know that i had headaches and even awful backache, it was different than usual, it's because i was spending nights at my DD. Lo and behold when i took my pillow along it just went away. But this is just my story. For sure you could try that for 2 nights or so, but if not i'd say for you to have it checked out. It's the only reasonable thing to do.
Wendy, i think almost everyone could sympathize with you. Running and running, to this appointment and to that scan, and sometimes no matter how hard you try things just don't fall into place. Z is absolutely right, you damn right you are depressed, you gotta wait 2 weeks for a freaking scan. Right Lita, that's how you would put it i think. Somehow if you could hold on and we could try to wait it our along with you. Warm gentle hugs...
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Wendy- Along with the others I feel concerned and a bit puzzled. Why would you take letrozole again after it failed twice? I noticed from your profile that you had used Faslodex in the past and wondered how that went? Were you going to take Faslodex wth the Ibrance?
I'm very glad that you have the dogs getting you out a few times per day, I think that that is priceless and I hope it makes you feel better to get out. I also listen to books on tape (audible.com) when I walk and if it is a book that really interests me, I can't wait to get out and walk to find out what will happen. Maybe you could try it-I feel so much better walking outside with whatever is going on.
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Wendy, can you ask about a MRI? That would give you answers if its not cancer. Which would be the best news.
I love that you are taking your dogs out! I really like Nkb's idea re: the book discs. I love audioboks! Take care of yourself. We are here waiting with you...
Hugs and prayers,
Claudia
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It just made sense to me to check my pillows. Because these seem to start at night. Had a brain MRI just about six weeks ago and it was completely clear. So I don’t think it’s that. But the oncologist did say that the mets on the back of my skull could interfere with those muscles and tendons on that side of my neck, as well as the nerves.
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I have no idea why half of my posts are being cut off. But only about half of them are showing up. I was saying that with the cancer on the back of my skull, the mo thinks that’s causing pain and I hate painkillers cause they make me feel like I’m not breathing so I spend the whole four hours after I take one, all tensed up trying to remember to breath!!!!
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Gracie, do you eat or drink anything in the evening, after dinner? I’m asking because at one time I noticed an association between drinking decaf or herbal tea with honey before bed and waking up with a pain in the back of my head. Odd, I know, but the association was very obvious, and I attributed itto the honey and stopped doing it.
I also think trying a different pillow is a good idea.
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Has anyone heard from Pattypeppermint?
She was last on the threads Sept 17.
I'm a litle worried.
L
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Wendy. Sending hope you get some relief. This may sound silly but have you tried to ask if they have a cancellation could they call you? It may give you hope to get therefaster.
Gracie I have mets in my C spine and I have a collection of pillows that I am always adjusting. I can wake up in the middle of the night with a headache ...adjust pillows and it seem ok the next time I wake up. About 4 Times a night. Hope that’s all it is for you.
Pet scan next Monday for me. Sending good wishes to all. Maire.
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Wendy, You are in my thoughts as you go through yet another trying time. I hope.they get their act together, and FAST. You do not deserve any of this. Big hugs to you.
Lynne
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Deanna, never thought about that, but I know last night I didn’t. I do however occasionally have some warm milk with honey in it! Will be stopping that for a while, and see if it gets any better ! Thanks for that info
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I've checked Peppermint's thread periodically and I think about her all the time. In her last posts she was saying it was very hard to formulate words ... find the right word ... and type messages. She has friends that she speaks with and who do report so we will hear something soon.
>Z<
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Yes I've been wondering about Patty also I hope she is well.
Maire is yeah I tried that there are just so many folks with cancer . So empty spots to be had and I think they triage that so maybe that's some good news for me. 😊
Thank you Lynne you always say the sweetest things you have such a big ❤️.
Lita with all you're dealing with ...you are truly a Wonder Woman
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Z, thanks for the update on Patty.
Seems so MANY of us are facing challenges these days.
Couple of more weeks b4 I get my follow-up brain MRI. Hope they can do SOMETHING avout my vision problems.
I want to be able to drive again, but if this keeps up, they won't clear me. Sigh.
L
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Maire hoping for the best.
I was checking in on Patty's thread, but still waiting for her to respond.
Lita hope you get your answers soon.
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Someone heard from Patty through text messages just about a week ago. She was dehydrated and vomiting again and thought she was on her way to the hospital again. Thats the last I heard......
Wendy, thinking about you.....hope you get your answers soon. Scanxiety is the worst, I have mine Nov 8th and just feel very strongly that something is going on. Walking the dogs is good.
Gracie, pillows have definitely given me headaches, recently in fact. Freaked me out at first until I went "Oh duh" pillows.....
Maire, good luck with scans
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Scanxiety here, too. I am in a clinical trial, and my weekly Taxol dose was reduced 20% after 8 months because of ascending neuropathy. As I feared would happen, my tumor markers crept up during the first cycle (i.e. three infusions) of the dose reduction. We are continuing the reduced dose for three more weeks and then scanning.
SO...I am up for an echocardiogram to make sure the pericardial mets aren't shindigging again, and also a CT the week before Thanksgiving to check on the bones and such. What I really want is a PET scan. I have always had an end-of-year PET scan until last year when insurance became the devil's handmaiden.
But I have other problems to whine about. Over my crazy summer of living in hotels, I slacked on taking the proper supplements for my MTHFR (I'm homozygous C677T). Started feeling some weird new stuff going on, so on a hunch I asked to have my homocysteine checked. Dug around and learned that systemic chemo and IV Benadryl and Pepcid ALL can raise homocysteine levels in patients who have MTHFR, and guess what? I now have a whopping case of hyperhomocysteninemia. Normal homocysteine range is something like 4-10... well, mine is 35. YEP. So I am a sitting duck for stroke, heart attach, and DVT until we get that sucker down.
Wouldn't that be ridiculous to outrun BC for a decade only to drop over dead from something else?? Yikes, here comes that blasted bus!
I feel wretched. With my MTHFR this jacked up, I feel like my system is not clearing the infusion meds in a timely way. It's almost Friday and my cheeks are still red and hot from Monday's steroids. My mouth is like cotton all the time. I'm falling asleep in my chair every afternoon and having sputtery waves of anxiety and depression. Not a fun week.
But onward we go. I need something fun to happen at least one day this week, dangit. WE ALL DO!!!
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Wendy...everyone else has covered anything I could offer, especially Z. I'm sure she's right. And you do have a lot to worry about so you're doing well to get out of bed to walk the dog. You have all the coping skills and we have all the support we can give you right here.
Gracie....I have a lot of mets in my neck and skull (and everywhere else) and my neck and head hurt a lot in the night so I'm another one who adjusts pillows all night. Sometimes I get them just right, sometimes they're wrong no matter where I put them but I also have degenerative disease in my neck so i put a lot of my pain down to that...that and tense muscles from the pain in my neck (and probably from BEING a pain in the neck!) but I do sympathise.
Maire...good luck with the PET scan. I'll be thinking of you xx
I hope this week improves for everyone having a tough time. Hugs
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Lulubee - I am so impressed that you figured that out and with your proactive dealing in general. You will be able to manage and ultimately control this homocysteine now that you have the information. Take care of yourself and try to be with someone who knows the signs of stroke all the time until this is controlled. I don't know much about stroke but are there pills you should be carrying around?
I am also sympathetic with taking time off from supplements ... and having consequences. After a year and a half of taking a handful of pills everyday I stopped for the summer and of course had new mets in my liver by September.
I encourage everyone to go over to the patty thread and say hi to patty. My gut says she is reading but not up to responding and your thoughts will mean a lot. Composing a reply is overwhelming when you are vomiting and dehydrated but someone can her read her the posts I am sure.
>Z<
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