STEAM ROOM FOR ANGER

chronicpain

Janila03, you need to be sure what the final biopsy report showed and of course also complete the PET. There is a big difference between a negative biopsy and a biopsy with insufficient tissue, still waiting on final review, or whatever “no component information" means in your hospital.

Hoping both bx and PET are negative and best wishes,

CP

NotBrokenJustBent

This is a HUGE issue for me. I am not stage 4 but these Ibrance commercials piss me off! What happened to Julie and now we have Alice? They encourage you to tell your doctor about Ibrance? IMHO any stage 4 sisters that have a doctor that does not know about Ibrance, RUN!!! OMG.... no wonder it is so expensive. Swear to God, every half our they advertise. Bring down the damn costs for love of god!

marijen

NBJB Alice is definitely too cheerful. You think the Ibrance people want you to push for it whether or not it’s the right choice. That’s just wrong.

Janila, too be sure why not get a second opinion from a hepatologist? (After you get your Pet Scan results)

runor

Lita, don't tell me your rhubarb is already up enough that you can harvest and bake with it ?!? And I still have a glacier on my lawn (grumble, Canada).

Lita57

In California, peak rhubarb season is April thru July .

Spring is late coming in many parts of the country, sadly.

Dianarose

Lita- you are so lucky with your weather. It is freezing here in Maine! Some years we reall don’t get a spring. Had some snow and freezing rain last night. We are going to Bermuda on the 4th. Looking forward to warm weather and sunshine ☀️.

marijen

I’ve read that in a few years there will be a shortage of PCPs. So what? Mine doesn’t have a clue about cancer or back pain due to vertebrae burst, arthitis, AI symptoms. All she did was act as a broker house sending me out to good and bad specialists. Mostly bad, but my heart doctor And my opthamologists are keepers. It doesn’t matter now because she offto a more meaningful career at the Veteran’s Hospital. I picked my MO myself. She thinks I made the change due to vicinity, no, that wasn’t the reason. My previous MO was more than rude and arrogant. My questions for her were such a bother. She runs the clinical trials - way too busy for patients. I had the good fortune to meet two of her patients (one here at BCO) that had the same distaste for her. Lately l feel that with most of my doctors I would be just as well off with a robot. That could be the future?

Lita57

Marijen,

That just might be. Hey, we have robotic cars now. The robot drs could just punch all the symptoms into a computer and probably come up w/better answers than a dr might. I don't need a "touchy feely" doc....I just want somebody (or some THING) who can treat me properly and not give me the run around.

But I wouldn't mind having that halogram doc from one the Star Trek shows. He seems pretty sharp. Wouldn't want Gregory House, tho. Loved the show, but his bedside manner left MUCH to be desired.

L

LoriCA

Notbroken you made me laugh out loud for real because every time I see Julie (and now Alice) she gets a big F.U. from me hahaha! I'm HER2+ so Ibrance isn't for me, I just get so mad because I think it's misleading, that if you take Ibrance you'll feel great and be all happy and cheerful. B.S. Maybe Julie and Alice are supposed to be Stage IV NEAD and maybe if you're NEAD you do feel that good? All I know is that if I'm having a rough day and that commercial comes on, better watch out! You're absolutely right, they should stop spending money on advertising and work on reducing these insane costs we'll be incurring for the rest of our lives. I wonder if Ibrance knows (or cares) how much we all hate those commercials?

marijen the best thing about having a PPO instead of an HMO is getting to bypass the need to get a referral from a PCP. I can just go directly to any specialist I want. I do coordinate everything through my M.O. but I haven't seen my PCP since my diagnosis because my M.O. has handled anything that hasn't required another specialist (like my cardiologist). I get it that going through a PCP makes sense for most people, but not when you have something complicated like cancer that is beyond their scope. I think it would make more sense if they would let you designate your M.O. as your PCP as long as you're in treatment.

Micmel

LoriCa~ I am stage four NEAD. I do NOT feel or act like Julie or Alice. And I am 47. There is no way, I could be up all day long, no less run up and down stairs and teach a few dozen students. Without breaking into the worst sweat heat flash, then I would need fifteen minutes just to look like a normal human being. Because I’ve sweat through my skin through every cell in my body and I am soaking wet. My hair is stuck to my head and then I feel like I need a hair dryer to dry off. Those commercials are crap!!! Some women do feel good. But I would suppose they are not jogging regularly, or they would use real People to do the ads. But the reason they don’t is, no one wants to find hope in seeing a hunched over, muscled bound, pain ridden, sometimes dizzy, sometimes red in the face, sometimes exhausted, fatigue ridden beyond measure. They want people to think that this will bring them closer to who they used to be. It is just not true for everyone. At least no one I know. Crock of shit! ~M~ They want the people that look like they are doing just fine. I’m doing ok. But there are NO guarantees As we know !

kathindc

Ladies, may I suggest you post your complaints about the Ibrance ads on this thread, Provide feedback/advice about our site and campaigns?!. Here is the link:

https://community.breastcancer.org/forum/93/topics/860125?page=9#idx_245

The mods check in on this forum periodically. It's amazing how we are bombarded with four Ibrance or Xgeva ads on just about every page on the main web site pages. I can't imagine a newbie feeling comfortable doing his/her research here.

marijen

LoriCA Thanks for your input about PPO/HMO. It's my understanding that with Medicare we don't need referrals, however, for the clinic I go to, it is their "rules". What bothers me is our "parts" are picked apart my these specialists and they don't want to know about anything that doesn't pertain to their body section! Today I mentioned pain in my pelvis and my MO was quick to ask did I tell my PCP? Well no because when I walked into the exam room, the nurse said they only had time for two issues. hahaha. Mo replies well then make another appointment! Right, two things about that, one it means another half day for me including an hour of travel time to mention one thing and another time slot for them - I mean they make patients wait anyways don't they? I'm practically screaming with laughter. Hey I thought since um because I have BC and I might have mets sooner or later my pelvic area might be considered?? Gotta love them. I'll take a robot when they come available, er...that would be one without judgement.

Artista964

You dont need a referral for medicare. If you have issues which makes sense to see a specialist for then they should book the appt. If they don't take medicare then thats diffetent. Id contact your local representatives about their rules. They should know.

Egads007

We all know it, the kind of crying that comes from the gut up...great heaving sobs that leave you breathless. The kind of hurt that seems to bring you to the brink of losing yourself...who you are..what you previously thought you were and what you mistakenly thought others thought of you. The shock that anyone could be so unkind,ungrateful, cruel and intentionally wanting to make you feel this way. At very least the heaving sobs are a relief, hopefully they exhaust me enough to stop the words from playing over endlessly in my head. Just a vent. I'll bounce back, always do.

LoriCA

Micmel, darn it, you took away all of my motivation for trying to get to NEAD hahaha!! I keep hoping that one of these days I'm going to feel better than I do right now. I still have many days when I'm proud of myself just for getting out of bed, showering, dressing and feeding myself breakfast on my own (I know that sounds bad, but I was in really rough shape last year), and then I turn around and beat myself up for not handling things as well as Julie and Alice. I can fake it for a few hours and people will comment about how well I'm doing, but as soon as I'm back home I'm done for. And yes the hot flashes, and it's going to be even more miserable during the summer isn't it? At least I don't have enough hair yet to worry about ruining my hairstyle when the hot flashes hit haha! I get the chills from herceptin for a few days after my infusion too, so this week I'm bundled up like it's the dead of winter inside the house (including a warm hat and a blanket) even though it's in the 70s outside, then I start ripping off layers every time a hot flash hits, then a few minutes later I'm putting everything back on. My husband just laughs at me. The real b*tch is that I already went through menopause once naturally and now I'm dealing with the hot flashes and night sweats all over again. Wasn't once enough?? This is our "new normal" haha!

marijen sorry I'm not familiar with how Medicare works. My M.O. probably treats me the way he does because I am Stage IV with an extremely aggressive cancer that almost killed me once already, and if it starts growing again we need to jump on it immediately. He watches me like a hawk and wants to know absolutely every symptom. When I read stories from other women about problems with their doctors and other medical professionals, it makes me realize how lucky I am, all of my doctors have been great. Only two issues per visit? That's nuts, cancer is a very complicated disease. And a lot of our issues are due to the drugs we are on, so I want to talk to someone who understands the big picture.

marijen

Lori, exactly, we all should have some one looking at the big picture and not a PCP that knows nothing about breast cancer, bone mets, liver mets, lung mets, and brain mets, not to mention treatments. I’ve even seen one woman that had elbow mets. Actually it could happen anywhere and I have to add skin mets. So shouldn’t that person be the MO? Not the radiologist, the BS, or the endocrinologogist? It makes sense to me. Why do they insist on the PCP outsourcing, poor thing. With my AI eye problems I got bumped around too. How much can an opthamologist know about Aromatase Inhibitors, especially when the MOs can be in denial about side effects? This is why I look out for myself and get every symptom documented. We have to keep at it until someone listens. Make sure they don’t drop the ball. So glad your MO is watching out for you.

jaycee49

I'm really mad and upset. I just found out that the very first person I met and PM'd with on BCO is stage IV now with mets all over the place. I almost wish I hadn't tried to find her but I did. Now I know. I wish I didn't know. Can I unknow it now? No, of course not. I need to write to her and support her if I can. It just SUCKS.

Micmel

I am very sorry Jaycee. Hugs to you.

runor

Jaycee, I always feel a little bit of hard won hope sucked out of me when I hear news like that. We all try so hard for that stupid, positive attitude that will save us (cough) and then you hear this and it just ... flattens you. I am sorry for you and for her.

jaycee49

Thanks, mel and runor. I messaged her but probably said all the wrong things. It was all about me and how devastated I was. Of course, she replied and asked how I was doing. You know the four places most likely to have mets? Lungs, liver, bones, brain? She has them ALL. Weekly taxol for a YEAR. I feel so humbled by her existence I don't know what to say. To her or anyone.

Micmel

Jaycee~ no one always knows exactly what to say. But you reached out and cared. Now is your chance to tell her how you feel about her. I am also humbled by your sharing this with us. I am reaching out to all of you. We are really a sisterhood. I can feel your pain. Honestly. Strange. But true. Hugs to you and your amazing friend. Much love ~M~

jaycee49

Things are starting to come back to me now. I actually met her on another forum and she told me about BCO. I wouldn't even be here without her. Wouldn't have gotten all the info and support from BCO. We only PM'd a few times but she is just SO important in my journey. I hate that word. Sounds like a vacation. Some vacation.

I wrote her again. I hope I did better. What do you say? Oh, what I said in the first paragraph of this post.

Micmel

Jaycee~anything you say is ok. You're showing kindness and friendship..... it's all we can do to support each other in the place I call shit stew. I'm glad she brought you here. She will be added to my daily strength thoughts. I'm not overally religious, but I care very much for people especially in the same battle or journey as I am in. Just being you, should be enough, IMO..... much love ~M~

LoriCA

Jaycee I'm so sorry to hear that. I think it will mean a lot to her that you cared and reached out. Just knowing that someone was thinking about me was enough to help me get through some rough days. Big hugs to you.

bcincolorado

Agree. Some ladies have zero support other than here and to know someone is thinking about them can help brighten their day that might be really stinky.

NotBrokenJustBent

I have a rant. In the whole sceme of things it is small stuff but here it is. So I like happy uplifting animal stories so when on FB I click onto those. Guess I am thereafter in the system and it is known I love animals. I see a petition about an abused dog that was tortured, his ears cut off and thereafter disemboweled. They caught the freak and were looking for prosecution via a petition. I signed. Since then my email is filled with 20 animal horror stories a day and the email titles completely freak me out! I can't keep up with unsubscribing to all the influx of emails and now I have the "save our water", "save our air", "climate change", "mom in Uganda with no food for children" "civil rights violations", OMG.... everyone with a cause is up my butt! I had to delete my email. I kid you not, 50 emails a day and growing. THIS IS WHY NO ONE WANTS TO GET INVOLVED IN ANYTHING! What an idiot I was for signing a damn petition!!!

Lita57

I hardly ever go on Facebook anymore. I just got SICK and TIRED of getting blasted with all that crap. Don't do those silly quiz/poll things either (what Disney Princess are you?....etc.).

Apparently I don't have the correct version of Adobe on my computer. I was trying to complete one of those "fill in the fields" forms, and when I tried to send it back, it said I couldn't do it unless I signed up for the newer Adobe program, which one must PAY FOR first of course. I couldn't even save the completed form by another file name either. It kept prompting me that it will only save the "template" unless I go buy the upgrade where it will save your data in the file. I don't want to pay for the newer Adobe because I hardly ever use it, and I won't be around long enough to reap the advantages of the $$ spent.

I am supremely PO'd because I spent close to 3 hours typing the info into those fields because not everything could simply be copied and pasted from MS Word, but at least I have Word to fall back on. If I can't get this resolved. I'll just have to send the end user Word doc files, whether they like it or not.

Terminal St IV people shouldn't have to deal with this BS.

L

marijen

Spam and phishing emails: Your email service provider should have an address to forward spam and phishing emails to so that they can lock future emails out. Also, if you move the emails to your junk or spam file, you can delete all at once, plus future junk or spam emails from the same source will fall into this file. Try to check all the options at your email to locate the spam/phishing forwarding addresses or the spam/junk folders. It depends on which email service you are using, so I can't tell you specifically. (if you just delete, you'll just keep getting them). And don't try to unsubscribe then when they get your unsubscribe they will know your email address is active. Same thing for telephone marketers, if you answer the call they will keep calling. You have to go to your phone account and block the number to make it stop.

Lula73

Lita-if you still have the document pulled up, try printing it to a pdf. You click file then print and select pdf file from the printer drop down box, then click print.. It will save it in pdf format. Then you can attach it, upload it, etc and it should do it without having to upgrade. Hope this helps!

Lita57

I already tried that.

DD says the file probably has an embedded command that the end user put in when it was created that DENIES that function...it just automatically boots you over to this other prompt that says if you want to save it in a PDF, send it, sign it, or any other function, you have to UPGRADE to the newer version that has all these other functions and apps.

DD is going to try and help me in the morning. She has the newer version of Adobe on her computer.

Thanks for your suggestions :>).

L