Starting Chemo March 2015

Jackbirdie

Maureen- good for you!

Ninja- That just sucks. Let them have it with your letter. I get so angry STILL sometimes I feel like a bomb about to explode. Here. Take this card in to that stupid office, show them this, and get the GD script!

I am really sorry you're going through this. You're just trying to feel better!

Italychick

ninja going through something similar. MO dragged feet on getting echo approved because I wanted to switch from muga to echo. Then called me yesterday saying it got approved and to call scanning facility. So I call, they don't have the fax. So the scanning facility calls MO while I'm on the phone and they tell her they will fax it right over, and the scanning center said they will call me as soon as they get the fax.

Two and a half hours later, no call. They probably haven't received the fax. So not even sure if I can get the echo done in time for my next Herceptin. I already let the MOs office have it about that because they do everything last minute and then nag me about why I haven't gotten the testing done yet. It was supposed to be done September 11 and on that date they hadn't even submitted it for approval.

If I did my job that poorly, I would be fired. And why are they still faxing anyway?

DavisD

Ugh Mary! So sorry you had to deal with that crap. I have had similar experiences and I think they do need to hear about how it effects the people they serve. You go girl!

Sharon-Congratulations on your first week back! You have come so far. I miss our talks about horses...you're my equine sista! thanks for thinking about me.

Katy-haven't checked out the song yet, just got home and wanted to stay in touch. I'm sure it will be just what I need, you always seem to know.

Hi Theresa and Allison!

Maryellen-We went to Ocean City MD. A friend rented a house Oceanside so even though I don't care for all the commercialism it was nice to be near the water and in a house not hotel.

Hi Lee and Eileen-I can't imagine having those plastic TE's when being fried in radiation...I'm so sorry. Hope yours isn't so bad.

I rang the bell today at radiation! 28 plus 5 boosts and I feel like crap but soooo glad I'm done with that nightmare. Herceptin still until March and I don't know yet about Tamoxifen.

Jackbirdie

Diane!!! YAY!!!! Done with rads. So happy and relieved for you!

I'm ringing the bell and sending in dancing girls. 🎉🎉🎉🎉🎉🔔🔔🔔🔔🎶🔔🔔🎶🎶🎶💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿💃🏿🔔🔔🔔🔔🎶🎶🎶🎶🔔🔔🔔🔔🔔🔔🔔🔔

Jackbirdie

to all regarding faxes. It's worse than the 1980s. I had major problems with my old (fired) pcp. They do it through the computer now and they don't get a "transmittal" or failure to send notice. They also don't check to see if they get there so until the patient complains they are in complacent oblivion. Even though they know it's s design failure. I now always call an hour after they say they'll send it and stay on them like stink onshit. They hated me. I don't care.

shaz101

diane. I was just sitting in bed thinking about bringing paige in and giving him a brush. Ill give his face a cuddle for you. YAY for rads finishing.

shaz101

he wasn't feeling very photogenic today!

Jackbirdie

oh he is so HANDSOME

Carrie37

Mary, stuff like that drives me insane. I'm sorry you have to deal with it. It reminded me that I never followed up with my nurse navigator about the PT and Rads consult she said she was making for me last week. I probably forgot about it because of my insurance bullshit. Seriously, I am so angry with my insurance company. They don't give a crap about people. Just money and making record profits. Meanwhile there are more and more cases of cancer. I'm bitter and very angry right now. Sorry if I've offended anyone.

Jackbirdie

Nonsense Carrie- nothing offensive there.

I have been having an angry week myself. Absolutely no specific reason. Other than the obvious. I feel like a bomb about to explode. I think we all feel it now and then. It's like having to go through the steps of grief over and over because you never get "over" it.

shaz101

he is handsome. 😊

Carrie, don't apologise. I feel like ripping someone's bloody head off occasionally. I think i ranted last weekend. Felt good to get it out.

slothabouttown

Sharon, thank you for the pic of your beautiful horse! That made my day!

Trvler

Congrats on being done with rads, Diane!!!

Sharon: He is beautiful!

It's sad how medical people just don't follow through. Or maybe it's just the admin people.

Love the cancer card. Have used it myself a time or two.

Meme117

Sharon he is gorgeous!

Congrats Diane! Wish I was done and not just starting. Having any issues with the herceptin?

Sorry Carrie for your insurance nightmare.

Katy I love the cancer card. It'd be great to have a stack and give out accordingly.

So sorry Mary for your office issues. It's crazy that you have to follow up, I hate when people can't just do their job. I've had an issue with each office except for the RO, but give them time right.

I went out last night to a coach bag bingo for the MS ride and guess who won, ME, here's my new purse though a bit small for me and I won a raffle basket, the corona basket filled with beer, tequila and a gift card to chilies.

Carrie37

Pretty sure you deserve to win something Maryellen! Congrats!

DavisD

Ah, Sharon. He is so handsome! I miss my bay horse so much. Dreading making a decision about my old Arab mare before this winter. She's almost 30 and not getting around so well. I don't want her to suffer this winter...

Carrie-no worries here. I've been either angry or depressed (interchangeable I believe) until today for I don't know how long. I think it's easing a bit since I'm done with the freakin burn fest!

Good for you Maryellen! You deserve a little sumpin. The Herceptin doesn't seem to be causing any overt SE but I have absolutely zero hunger, and all the time too. My taste buds are fine again but I don't feel hungry. I make myself eat something healthy at least three times a day but it's very little and my stomach says stop right away. It has to be the Herceptin because I've never experienced this except when under a lot of stress and then it only happened for a day or two. Fortunately I had a few extra pounds going into this. I would love to really enjoy food again. As far as the possibility of heart problems, I was supposed to have an echo a couple weeks ago but got too busy...scheduled for Friday now. Also have a CT scan w/contrast of chest, abdomen and pelvis scheduled for Tuesday/this was because the insurance company wouldn't cover the PET scan.

Feeling better overall today. Reached out to have coffee with one friend and got a call from another old friend as soon as I got home. We ran some errands together and caught up. Felt almost normal!

Thanks for the dancing girls Katy!

Allison-Yes to the cancer card! I use it wisely but without guilt.

DavisD

One more SE I think might be related to the Herceptin...sleeping only a couple hours at a time and difficulty going back to sleep. I've always struggled with sleep but this seems different and I believe I read Herceptin can cause sleep disturbances. Even with 1 mg Ativan and 12.5 Ambien ER I wake up after about three hours and can't go back to sleep sometimes...Anyone else experiencing this?

IndyGal35

My appetite has been lower than normal on the Herceptin too, Diane, but most of my restlessness at night has been from my TE discomfort, I think. I had Big D for 2 weeks right after my last dose, but I'm not sure if it's related. Right now, I'm mostly just tired from rads. When I do crave food lately, it's mostly sweets. I think my body is craving sugar for energy. Why can't I ever crave lettuce? Ha

Italychick

Just got my genetic testing results in the mail which surprised me. All negative, no sign of any genetic mutation. I kind of figured as much when the breast doctor mailed them to me because she never does that with anything concerning. I didn't really think I had any, but you never know. So at least that is something I don't have to worry about. And so much for the MO I fired early on who filled my head with Lynch disease and all this other crap and wanted me tested because she had concerns.

Diane, I am I think halfway through Herceptin and not having any side effects that I can detect. The watery eyes and runny nose have even gone away. Hope that crap is working.

Jackbirdie

Great news, T! Really happy on the negative genetics. Glad you fired that first MO too!

Jackbirdie

Picked a few posies today.

For my girlzz

BBwithBC45

Katy, that's a beautiful bouquet

jumbledbamboo

Diane CONGRATS!

DavisD. My sleep is so screwy with Herceptin. I often wander in here when no one is around lol. I figured my sleep and it was bad. Like only 4-5 hours. I force myself to lay down and tend to nap for long periods. My sleep is very disrupted.

Carrie37

Speaking of sleep and waking up frequently.....

I thought it was my TE's. But I am less and less sore. I know being on my phone doesn't help! Before surgery I was sure it was the chemo that kept me awake. Now...well....stress maybe?? My appetite is lower too. I also crave sweets and it doesn't help when someone makes me a homemade chocolate cake. So good! And the sugar is SO bad for me. 😁😁 Did I happen to mention that I lost five pounds after surgery? I kinda thought my boobs would weigh more than that! Ha!

Theresa, great news on the genetics!

Diane, so happy for you being done with rads.

Sharon, I forgot to say how beautiful your horse is...what a handsome guy!

And Katy...the flowers are gorgeous!

Carrie37

So I have periodically been reading the exercise thread and noticed the discussion about melatonin and Tamoxifin. Maybe you can all remember that I'm am seriously considering not doing hormonal therapy. I'm kind of being a brat about it all. Anyway, I found this article. Haven't read it completely but found it interesting and frustrating.

http://www.pharmaceutical-journal.com/news-and-analysis/news/exposure-to-light-at-night-may-reduce-effectiveness-of-breast-cancer-drug-tamoxifen/20065973.article

DavisD

Katy-thanks for the beautiful flowers! I saw your hair pic on FB, looking good girl!

Theresa-always happy to hear good news, especially for you.

jumbled-4-5 hrs was about right for me last night. I don't take naps during the day since finishing chemo. I do make myself stay in bed until around 6am just in case I doze.

Carrie-I remember those nasty TE's I hated them and had my swap out surgery delayed twice because of chronic UTIs. They finally put me on prophalactic antibiotics 10 days before surgery. I read the article about Tamoxifen/Mel and it is confusing. I'm grateful I no longer work nights at least. If I remember correctly you're a nurse? Hopefully you won't be working nights...So many variables in this crap. I'm not sure if I'm going to take it just for all the other risks since mine was 85% HER2. We should be having that discussion next visit.

Indygal-I too will craze a pastry or donut but even that doesn't taste as good when it gets to my mouth. Lettuce no way, ha! Maybe mine is partial stress...my hubby may be out of a job soon and I'm just sick when I think of all that could mean. We aren't wealthy by any means but I have dogs, cats, an old horse in retirement and our house (the bank owns most of it!). Trying not to panic

eheinrich

I downloaded the article - the original study - and will give it a read later. One thing I noticed with a quick peek though was that they were using rats which they had implanted active tumors into. This is different than the protective work that tamox is supposed to be doing. But I'll give it a read.

Jackbirdie

Carrie that is one of the articles I read when doing my research. I will be interested to hear Eilieen's take on it.

But for other health reasons, getting good sleep is very important to me. I was reminded recently that I have several sleep masks and started using them again. It has been a game changer. I buy them with lavender in them which smell nice and helps me to relax. And I do get off of the screens earlier, and try to follow good hygiene practices. Except I don't get up and out of bed (except to pee) like sleep hygiene recommends when you wake up. I keep my mask on and breathe, meditate to put my breast cells back to sleep, and often do my manual lymph drainage massage lying down in bed with my mask on. I find my sleep has improved greatly, and I don't seem to wake up and need to pee so much.

So my thinking is this is good regardless of the melatonin/tamoxifen issue. If it turns out to be true in humans, I will be ahead of the game.

Trvler

I use sleep masks but I don't want scented ones. I use the black ones my husband used to get when he traveled overseas. I find the black helps me sleep better than the light grey. It is the morning light that used to wake me up (especially in the summer when it gets light starting around 5 am. Now it's not an issue at all.

Theresa: So good about your tests. I kind of feel the whole genetic testing thing is a bit of a scam. The percentage of +'s seems extremely low to me. SOMEONE is making a lot of $$. And I did it, too, for the same reasons everyone does. Fear.

Diane: I am sorry you are stressing over your husband's job. There should be a law that nothing else stressful should happen to any of us during this crappy time.

My neighbor who I am guessing is about 45 turned down both Tamoxifen and rads. And she wasn't going to do chemo but her husband got mad at her. She thinks the whole cancer industry is a big scam.

eheinrich

I've been sleeping better than usual. Getting up to pee almost never where I used to every night. Probably because I sweat out all fluids. I get up on occasion to move my pillow piles to a drier spot on the bed. Blech. I think because I'm restricted I actually sleep better - no tossing and turning.