Starting Chemo March 2015

SueH58

WP-Regardless of what the guy "thought," he should have zipped it. What a tacky leader.

Shaz - is the anti-nausea drug Zofran? I mentioned to a friend of mine recently (who is a oncology nurse) that I was having a nagging headache and a little nausea. She asked if I was taking Zofran. I said yes, and Advil. She told me that one of the SEs of Zofran is a headache. So I thought the headaches were a SE of the chemo, but sounds like it could be from the Zofran. I'm going to see if I can get script for another anti-nausea pill. So glad they determined the cause of your terrible headaches.

Jackbirdie

Indygal- are you at the spa today?

I hope all goes well

ninjamary

Whitney - I'm in agreement with Katy. I'm triple negative and there aren't any good stories out there for me. It's all doom and gloom. I try not to read any articles on BC anymore.

Meme117

Good morning from sunny PA, gonna be high 80s today☀️ I haven't caught up but Katy messaged me, thanks for keeping watch!

I'm sure some of you can relate - I overdid it on the weekend and last nightwas exhausted. I try to do everything as I've done before and then it hits me like a wall. Celebrated nephews college graduation, couldn't bear sitting outside for 3 hours so had to skip the actual ceremony. Cooked a fabulous brunch for Mother's Day and then enjoyed a wonderful dinner at sisters house. All of that plus the shopping, cooking, cleaning - it just becomes exhausting.

I would like to think the chemo drugs are out of my system by now, a week later but I wake up and think what is wrong with me, I feel so strange, sick but not nauseous just so many different things going on. Oh then I remember I have cancer and this is normal right now at least for me. For a few days I felt like someone punched me all over my body. I felt so hot sometimes like I was burning up. My mouth feels so strange I don't have words. And my stomach always feels odd. And recently my eyesight seems off, hard for me to read and type.

I belong to an online breast cancer group for my area and on the Facebook page this morning a woman who is three years out from her dx wrote that she feels blessed that she had breast cancer. I just don't get that feeling and I know I will never feel like that. Yesterday I managed a good walk and cried for half of it. I hate breast cancer, every f-ing bit of it!!!!

Except for all of you whom I'm fortunate enough to know and allow me to share and will understand and not judge or say "think positive". Oh and it is so hot and humid here that my wig is becoming unbearable

Jackbirdie

Thank you for checking in Maryellen- we all do worry so when someone is "awol".

Blessed? AYFKM.

We are not blessed. This is not a journey to make us better people.

Your SEs sound very familiar, and I'm so sorry.

Your sharing, as you well know, is very welcome here and you are not judged. Ever.

eheinrich

Allison! Happy Birthday!

Whitney - I also had a less than stellar lgfb night. The leader said multiple times how god doesn't give us more than we can handle (she had bc years ago) and this makes us stronger. First - f*ck you. Second - I am not a religious person & this isn't the avenue to talk about god. Third - oh, wait I already said that in #1.

I'm sure most of the folks mean well but.....

ThePrincess

Happy Birthday Allison!

so-she-did

Happy Birthday Allison! I hope you have a day filled with love.

Sorry to hear of the bad experiences with LGFB. The one I went to was run by a woman who is a two time survivor of breast cancer. She knew exactly what to say and not to say. The focus was mainly on the makeup, which is what I wanted that night - to forget and have some fun.

Did anyone else catch Good Morning America this morning? There was a piece on Sandra Lee (I didn't know who she was but evidently a famous chef) with the interview by Robin Roberts. Sandra Lee is getting a BMX for breast cancer. The main message she had was that we need to start screening for breast cancer at an earlier age, which is good, but there was also a discussion of why she was getting a BMX. This is how it came across: She caught the cancer early and it hadn't spread, had a lumpectomy, didn't have clear margins, talked to her surgeon, decided that 6 - 8 weeks of radiation would be too grueling, and decided to have a BMX. I know there was much more to this decision (no details about stage, grade, etc.) but this is the way it came across. Rather disturbing. There is this message being portrayed in the media that if you get a BMX there is no need for further treatment and your worries are gone.

It is good to "see" you Maryellen. I think it is great that you have found a local online support group as well.

Sharon - so glad that you are having less issues with migraines!

Jackbirdie

agree in the public meetings and support people should tread lightly about personal beliefs. I usually answer back when they say God wouldn't give you anything you can't handle.

WELL GOD MUST THINK I'M SOME KIND OF A BADASS. I stole it from a greeting card. Fits.

BBwithBC45

I'm In the chair right now. I complained once again about nausea and finally they decided to switch me to Aloxi. Stupid Aetna is still denying, even though Zofran obviously isn't helping after 10 infusions. So I'm getting Zofran again and I will get Aloxi for my final chemo next week. A-holes.

I've been complaining of blurry vision too, and I have a painful node in my neck, so I'm getting a CT of neck and brain on Friday, that is if Aetna approves. Feeling vary anxious about the results

Jackbirdie

BB- poor thing. You have enough to deal with just being in the chair today. So glad, very glad about the Aloxi. It has been quite helpful for me.

The eye blurriness and double vision is fairly common and should stop when chemo does. Another effing annoyance.

Please try not to worry about upcoming tests and scans. Keep your feet planted under you today. Just today.

I am sending a gentle hug and all the mojo I can muster.

Katy

Carrie37

Seriously, insurance companies can be so stupid!!!! My insurance company denied my PET scan because I don't have stage IV. My doctor fought with them on the phone and they still denied it. They also denied my chemo regimen at first because my MO and the insurance company had different dosage amount for my weight. Really??!!?

I am supposed to be going to a support group today. Not feeling up to it but they only meet once per month so I figure I should give it a try. Sigh. I feel so lazy.

Jackbirdie

Carrie I think it's good to give the support group a try. There is something in face to face communication that is different.

What a hassle over the insurance. You should not have to worry about fighting bills and inane rules when you're dealing with treatment. Is there anyone in your onc office that helps with claims? I've gotten s lot of help from mine.

greenae

hi all

Just want to check in. TC 3 was a lil tough on my stomach and energy level. I guess the good thing is I know its working? I have been trying to catch up, as i have been awol for a bit. I feel so good right before the infusion, almost normal. Then BOOM! My NP (who is Great!), said, "wait til ur done, u will see how much Better and Back to normal u will be!' Looking forward to that!

Theresa, dont worry, ur energy Will be back, Stay strong and please dont beat urself up. Wen i am on my stationary bike, i pretend i am on hills with you!

Whitney, that guy was a Major Jerk, and spoke Totally out of line. Ignorant Assh%le!

Ninja, i know how u feel. Dont want to read anymore. Trip neg... Ugh...me, too

Katy, feel better with PT, i started last week, it hadbetter work. I need to Spin! Lol and please keep being our inspiration, and oh so funny, too!

ShaZ the zofran gave me major headaches, so after 2 days i switched to compazine and taper off the decadron as well-- success! Keep feeling good!

Happy Birthday Allison

BB insurance companies are ridiculous. They have to give you what u need! Make a stink! And prayers for good results.

And to everyone i forgot or cant keep names straight typing on my fone, i hope u all feel better, i hope we can all start to get ahead of these SEs or at least know how to one -up them

I am thinking of All of You and thank u for being here!

Arlene

so-she-did

I just saw the Sandra Lee GMA interview pop up on Facebook and it looks like I misunderstood what she said. She is getting radiation, too. Sorry for the misinformation.

ninjamary

Amy,

I'd like to know how these "stars" are getting off with a mastectomy and that's it. Why bother with radiation if you are removing your boobs? They all make it sound so damn easy. I see ladies that are stage 1 getting chemo. What the hell? What is going on? I'm so confused.

Carrie - go to the support group. I really liked my meeting. Granted there was that one person there that got on my nerves, but it felt good to meet long term survivors and others going through the same thing.

SueH58

Mary, I imagine much of the decision for chemo was the Oncotype score or Mammaprint result. If I would have had a low oncotype score, I would not have needed chemo. So I'm assuming it's the same for Sandra and Rita and many others. The whole point to the Oncotype test was to NOT overtreat early state cancers for whom chemo would not add value.

SC_Coqui

If I didn't have a tomor and I would have been lymph node negative, meaning my diagnosis would have remained DCIS, I would have just had the mastectomy and no chemo.

The reason I had a mastectomy was because I had aggressive DCIS spread throughout my breast with two main locations that were spread out. But, had it been just that I wouldn't have had chemo.

Kathy044

When Sandra Lee said the cancer had not spread she meant it was not invasive. She has DCIS. No wonder there was no talk about chemo. Sorry to intrude on this thread, I made what I thought was a difficult decision to do chemo 5 years ago, chemo was tough, but I don't regret it for a moment.

http://pagesix.com/2015/05/12/sandra-lee-diagnosed-with-breast-cancer-will-undergo-double-mastecomy/

Kathy

wpmoon

my cancer is IDC and triple positive, which they're telling me are the main reasons I'm having chemo.

It's past noon here and I just woke up. Wasted my day off sleeping. Going in today to get fluids.

molly1976

The her2+ is what did it for me. Not having chemo wasn't even a question.

Leighrh

Ok... I am going to be a Bitter Betty here.... sorry  I try not to comment here much when I feel like crap and when I feel like I am hating life.. I should come out of it in a day or so....but.....

Does it seem like all these "celebrity" cases of BC always end up getting off with the easiest of treatments?  It sometimes seems to me that they never have to do the really hard stuff.  Like if you have enough status or money that the treatment options are less severe. I am sure it's the poison running through me talking but I get tired of seeing these BC champions documenting their " Struggle" when it looks pretty easy compared to what I have to do.  Just my 2 cents today

Sorry for the attitude...

 

Happy BDAY Allison!

Jackbirdie

Leigh- Not your imagination, and perfectly within your rights to be bitter. It sucks, they quite dangerously don't tell the whole truth, and it is usually regular women, and marginalized women, and women of color who end up paying for it when they listen to this pink washed bull crap

eheinrich

I was in the intermediate zone oncotype-wise. I decided to go ahead with chemo on doc advice (although one of 3 opinions was on the fence). Since I'm young (for this anyway) I decided I needed to fight with 2 fists.

Theresa, you have inspired me. I don't exercise, not even walking, been in a slump in terms of mood - don't know if it's this stupid situation, chemo, or the reduction in my psych meds but it's there. Also gained a bunch of weight in the last year (2 foot surgeries last year w/ 6wks off my feet didn't help). Exercise helps all 4, I know. I have a bike at my house that needs a tune up (but provides an excuse for not riding it), tires stay flat. Today I picked up bike #2 from my "other" house. It's a weird kind that actually folds up so in and out of the car is a snap. Cleaned her off, filled tires, seems good to go. There's a bike path maybe 10 mins from me that - even though we are in LA - goes through a nature preserve. It's 9 miles around or a short cut of 5. I'm going to give it a go.

eileen

molly1976

I think the famous people tend to just not talk about the bad parts. And I guess they can say whatever they want and don't really need to be public about it at all, but I think it would be way more helpful if they would say, "this freaking sucks!" I don't particularly like Angelina Jolie but I do like that she's willing to admit what she's been through is super hard and she knows she's got it easier than those without her resources,

I read a little while ago that Maggie Smith was in the middle of shooting one of the Harry Potter movies while she was going through BC treatment and was really honest about how terrible it was: http://www.telegraph.co.uk/culture/harry-potter/6260564/Dame-Maggie-Smith-reveals-Harry-Potter-breast-cancer-treatment-struggle.html

lovlilynne

Yeah, like Amy Robach - who did chemo, but only lost 1/4 of her hair. She doesn't say if she used cold caps or not, but how could she go through chemo for bc and not lose her hair otherwise?

Jackbirdie

Eileen! That is great! Theresa does inspire us all! But today you will be my hero if you even go around the block on that bike!

I am still sitting here with what feels like strep throat. Called the MO office and they gave suggestions for treating the symptoms. Right. They said if tomorrow not better I'll come in for a strep culture. But this swollen glands thing that turns into a sore throat, head and ear congested mess has happened with every single chemo, around day 4-5. It just gets worse every time. It's making me feel really pissy.

I'm just laying here. Miserable. Bone pain, excavation site pain, bored out of of my mind but with not enough concentration to watch a movie. It took me three days to watch the last one. Can't even work in poor neglected chemo bunny because my fingertips are all peeling and its tender. Oh boohoo!

Jackbirdie

Molly, thank you for sharing that link. I adore Maggie Smith. And she did not let me down this time either, she told it like it was for her. Interestingly, the movie mentioned in the article, From Time To Time,was the one it just took me 3 days to watch. It was a great movie, and as usual she was stellar in it. I just couldn't concentrate for long periods of time. But I recommend it if you love Dame Maggie. It's on Netflix.

eheinrich

I am going to start slow today just because it's already hot. Just a neighborhood ride. Tomorrow I'm going to get an early start.

so-she-did

I don't doubt for one minute that Sandra Lee would tell it like it is (short segment - not much time), but it is the media that seems to want to cast breast cancer in a certain light. There is a heavy focus on BMX in the news but without giving any details for the why of having it done. We all know that Sandra must be HER+ or there is some other just as sucky reason for opting for the BMX but the general public does not know this. It wasn't until I was diagnosed that I ever heard of ER, PR, and HER and how they would play a huge roll in my treatment. What everyone wanted to know when I was diagnosed was the stage of cancer - that was as much detail as they knew about breast cancer. It just bothers me that the message is being sent that a BMX is the best option to be cancer free. I'm driven by facts (I'm a science teacher) and it drives me nuts that the media isn't saying something more about the reasons behind why a BMX is being chosen other than to prevent the person from getting cancer in other breast, too. Talk about hormone receptors and the different types of BC - educate the public instead of just going for a sensational headline about a celebrity!