SEPTEMBER 2009 RADS

BetsyBuzz

Sorry Titan...I just did a quicky google search and they both came up so I assumed they were the same. You know what they say about assumptions.... Did you get them all the way through Taxol too?

micheleboots

I think neupogen is one shot,where neulasta is several shots.  I could be wrong, but this is what someone told me...I also think neupogen is a little cheaper.

Titan

neupogen is several shots..it is used when you have the weekly chemos..neulasta is given 24 hours after each treatment when you have dose dense...believe me..I remember them all vividly...I had 8 of the ***** shots...through ac and taxol...I hated them immensely...I dreaded them immensely...however...my WBC was always wonderful...The onc would say ..we don't want you to get sick Joyce....Michele...there are ways to help alleviate the pain...take claritin and aleve...it did help with the bone pain..my bone pain was mostly in my neck and abdomen...I guess it was good thing..but if I had to do it again..well I don't know...it wasn't that it was THAT bad...I just don't think I should have had any pain with "modern science" and I was ticked off that I had any at all...ok..whine, whine..

Titan

Another thing..how many lymph nodes did you all have removed?  I had 5 and honestly..except for a very minor tightness...I haven't noticed a thing. If I put both of my arms above my head I feel a tightness in my right arm..nothing in my left.do you think it should be something to be concerned about..I was just accepting it as the "way things are"...but if it should get worse..well...maybe I should do something about it????

Kawee..can you tell me the exercises you were given to loosen things up?

micheleboots

Titan, it is not the actual pain I dread. It is the thought that I would have to give it to myself...I could not do it...I can't even look at needles. That would make it hard to inject myself when I cant look...would most likely stab the cat..My doc is good about meds.  She says that chemo is all about treating SEs.  There is a drug for everything.  So far she has not steered me wrong..

echosalvaje

Michele, the neulasta shot is given by a nurse and is injected very slowly to keep the sting at bay. I had looked into doing the shot at home and found out that less of it was covered under the prescription benefit of my insurance than under the major medical portion. At first it seemed like a "so what" notion because I didn't want to drive 45 minutes back to the cancer center just for a shot. Then I found out each neulasta shot was running between 7500. and 10,000. a pop, (depending on which insurance/hospital you look at). Can you say, UNBELIEVABLE!!!!!

kawee

TITAN - Well, there are many, but the ones that hurt are the most important (unfortunately).  One is you get a short wooden pole (mine's about 3 inches around and 31 inches long) lay on your back and hold it with top of hands up and raise it directly over your head hold for 5 seconds.  Repeat 10 times once a day every other day.  The second is pretty much the same way only hold further out on the pole so that when you raise it over your head, your elbows are bent.  There are lots of others, if I had your fax or address I'd be happy to copy them and mail them or fax them to you.  Some of them are stretching, some are to open up your lymph system so the fluid will drain.  Don't know how to go about exchanging info.  But the tightness is scar tissue with probably some fluid.   

elimar86861

But the tightness is scar tissue with probably some fluid. 

Yeah, that's what I figured too, and the rads kind of give you micro-scarring over the whole area, on top of the surgical scars.

micheleboots

Echo,  are you talking dollors when you say 7 500 and 10 000?  I hope not.  I heard the shot here is $1300.  My insurance only covers %80.  Still a lot of money. I guess cancer is only for the rich.  I wish I had know that before the cancer fairy shit on me.  I would have told her, I'm not rich so buzz off.

Michele

BetsyBuzz

Michele,

Echo was talking about $$$$'s. My shot's cost $7500 a pop, outrageous huh?  Michele, I got my neulasta shot 24 hours after chemo. Same drill as Titan. My bone pain was mostly in my femur and hips. Sounds like we all react a little different. Hopefully, you will be one of the lucky ones that don't react to the fast increase in your bone marrow.

Titan

Ok..I looked up the freaking nuelasta shot on one of my million insurance receipts...original cost was around $8500.00..then with insurance discount it was around $2500.00..so I begin to wonder..what do people without insurance pay?????  That is a $6000 discount.Michele..I would have been happy to donate a couple of my nuelasta shots to you...really! 

Ok...I'm going to ramble here..you guys don't have to read this but I need to get it off my chest (no pun intended)...anyway..I'm at work and this girl whom I work with is studying to be a nurse and we were talking and she said How arrree....y...o.....u...  do...i..n...g..?  You know that long drawn out question...and I said I'm fine...how are you?.  and she said do you feel sick..and I responded...I have never felt sick (except for the nuelasta shot)..anyway she asked me if I was donating my time to help out other cancer patients since I'm such an inspiration and have such a good attitude..I was thinking..can I puke now..or later..anyway...I said no I wasn't donating my time or a hotline or anything but I told her about my buds at BCO...said that I try to go on the newbie sites to help them out once in awhile.anyway...is any one else doing anything...should we?????  Where are we supposed to find these people in our area...put an AD in the paper?  I told her that sometimes people just don't want to talk about it...anymore....or they can come here to get the support they need as I did..I never went to my clinics support person..I just didn't like the looks of her for some reason..not sure why??

Soo..anyway...how are a..l...l...of...Y.,.,O...U...?  It's Christmas!  and I'm feeling darn good..but deep down..way deep down..I'm already wondering if I will be here next year...does anyone else feel that way????  I keep going over in my head...you had DD CHEMO..STRONG STUFF, RADS....STRONG STUFF...your last mammo was "unremarkable"  but...your doctors don't want to see you until you are supposed to see them...protocol...but deep down..I still freak out sometimes...these times are coming fewer and fewer..but they are still there.

Oh well..thanks for listening...and as I have said one million times b-4...couldn't have done any of this without you.

Oh..and Betsy...Go Bucks...beat the Ducks!

kawee

I don't know, I just think it's all too soon.  I got a call today--same thing.  How are you feeling (this from a marketer--how the H@!# do they know).  Anyway, they wanted to know if I would donate money to women who have breast cancer and don't have insurance.  I mean after I hung up I felt so guilty, I mean I know I'm blessed to have insurance, but it only pays 80%.  All my bills still haven't come in yet.  I tried explaining that to her, but she just kept on and on and getting really pushy, so I finally hung up on her.  GUILT!!  But, you know, I just think it's a little too early to ask things from us.  Maybe I'm wrong, but let me get myself together first.  Let me get healed.  I know other women might go right out even during treatment and reach out to others, but I'm not there yet.  I think that's okay, isn't it?

And yes, I worry too a little.  Today at the PT, I have a sore spot on the side of my breast, probably fluid, but it started to worry me. 

Titan

It is way too soon for us to be reaching out..we are still way too raw...from everything..we need time to heal and get our minds wrapped around what has happened to us over the past year...I just like coming here to these threads right now...and talking..I feel like coming here is wrapping myself in a warm blanket and sitting in front of a fire with a nice glass of wine..that it is all I can do right now...I really can't reach out to anyone else right now...this is it.

echosalvaje

I'm with you on this "give it back" issue! Back in October during breast cancer awareness month, Safeway would ask at the check-out line if you wanted to donate to BC..........Usually I said, "BC has plenty of me, I'm not giving another dime."  Frankly I wish all the charitable foundations for cancer would stop sending me all their slick glossy brochures and instead spend the money on research.

Oh and BTW Titan......I'm a Ducks fan too............

Titan

Echo!  Oh man!  You are a ducks fan too!  I guess we will all be having some fun with this won't we?   Bucks vs. Ducks...funny stuff....My nephew has a pick em going..of course I'm going with my Buckeyes..but is is hard ...I don't know anythng about the Ducks...guess we will have to go with our hearts..but chocolate peanut butter Buckeyes have to be much better than Cowboy caviar!

micheleboots

I hate pushy people making me feel guilty.  In the summer before my family knew what was going on, I was coming out of a big store with my two kids, when a lady asked me for money for cancer research...Well I just happen to have no money in my wallet.  And I mean, not even a penny.  Well she wouldn't give up, just kept pushing, I kept telling her I really had nothing...it upset me so much.  If I had money I would have given it to her..If my kids were not with me, I would have ripped a strip off her. I still regret not going back and  giving her a piece of my mind.. 

Ok venting done..

BetsyBuzz

Titan - I don't know, Cowboy caviar is pretty damn good. Yea! Echo...another Duck fan!  

On the giving note - you ladies are right....it's way too soon to be doing anything but healing. Some of us aren't done with this round yet.

I went to see my rads onc today, which in an of itself is sort of depressing, as he told me month ago I didn't have to come back. Anyway, I have a breast infection. He said it's very rare that this has happened, just my freakin luck!!!! It's not lymphedema for which I am thankful. I feel for all you that are already dealing with that condition. My entire breast is still red, hot, swollen and sore. Brings back those "flaming" memories. Tonight, I started my 10 days of antibiotics...if at the end of 10 days it's not gone then we will do the steroid route. This sucks!

kawee

Betsy - Sorry about your infection, what gets infected?  I mean what in there and how?

Titan - Did you read my exercise thing I posted?

And by the way, I just love all of you on this thread, you've made my nightmare so much easier.

BetsyBuzz

Kawee - It's a tissue infection and it's my entire breast. Looks similar to how my breast looked after the rads but prior to my boosts. Red and inflamed. He didn't say what caused it...he did say it was extremely rare as an outcome from Rads. I'm just keeping my fingers crossed that it doesn't have anything to do with lymphedema. My node area & arm is not swollen, just my breast.

Titan

Kawee..yes..thanks for the exercises...! 

Betsy....I'm sorry about your infection!  Remember though, that you have always been the poster child for the very rare SE's....that no one else gets...

elimar86861

BetsyBuzz, we should have known something was up when you got bright red AGAIN.  If it wasn't so painful, I'd say leave it and paint the other bright green, but you can't go around hurting.  Hopefully a few days and the antibiotics will kick in.  Get Well Wishes!

Titan

Elimar...believe me...Betsy's "other' may just turn green..it is probably a rare side effect from being a "duck'..and Betsy will be sure to get it...she gets everything!

BetsyBuzz

I'm lovin it ladies. Thanks for the good wishes and laughs. Yes...I'm a rare Duck!

I like the image of a cooked breast of duck...sort of like Mtg's turkey. LOL

echosalvaje

Clearly this party ain't for the faint at heart. Boy-o-boy Betsy, that sounds so painful. Having a boob sized zit has to hurt. I hope those antibiotics get going at top speed. I think this is one of those times I am grateful for loppin' them both off.

lollys

Hi all havent checked in for a while but interesting to read about everyone with their lymph complaints and Betsy with her infection--I have been haveing more discomfort in my affected breast --I had double mastectomy both have implants buts affected breast never really looked great( smaller than the other and deflated ) anyway i have been having more pain and maybe a little swelling too I called my PT to see what she thinks as I had 30 nodes removed --no arm swelling yet but worried about that and was even worried about infection too-- looks like we all seem to have some pattern here!! Betsy hope you are better soon-- will keep you all posted-- 

Titan

Guess that is why they call the thread Before-during-after huh?  Lollys..good to hear from you..how is work going!  Getting back to the daily grind...dealing with co-workers..asking H..O..W..  A..R..E...Y..O...U...!  I still hate that long drawn out question..I want to say..breathe damn it.

Anyway...I shaved today..yes..I was driving and looked in my mirror and by gosh I saw hair on my jaw (jowl) line..I talked to a co-worker and she is still SHAVING and she is 6 years out..she is not a hairy type person either.   She never took biotin either but still has hair growing where it shouldn't be.

My DH said I'm ging to be the bearded lady!  Luckily..my razor wasn't in my hand at the time. 

lollys

THanks Titan--yes back to the grind--and everyone saying so HOW ...ARE....YOU.. you look great--does that mean I look great after what I have been through or do I really look great??hmmm??? I guess it is better than them not caring and saying I look like crap!! of course I am going without my wig so everyone sorta gets what I have been through--some just say wow you cut your hair really short!--oh well it does feel weird to be back in the routine--everything seems like a blurr-- oh by the way --I just keep on plucking!!! and hope these hairs just stop and start in the right places--have a good weekend all--

BetsyBuzz

Titan - I've shaved three times since my hair started growing again. I just couldn't handle I had more hair on my face than my head. Thankfully that trend has changed.

Laura - welcome back...I hope you don't have any infection brewing.

lollys

so here i am freaking again-- had my stess echo and y ejection fraction went downfrom64% to 50 %-- I have been a runner for 30 years-- I have restarted exercise and my blood pressure is normal-- although I dont have the endurance I used to have before allthis I just figured it was due to all the treatment and being run down-- I have been feeling really good except for tired later inthe day or if I exercise too much I am so scared now that I am ending up with cardiac problems from the adriamycin-- 50% is bottom of normal -- just thoght I would not be one that would have the problem but I am really scared-- the cardialogist said we will do another in 3 months and make sure it doesnt continue to trend down-- what if it does-- I hesitated doing adria because of this and made the decision to go with most aggressive treatmen now i am second guessing myself-- this sucks--I was feeling so up and this has just destroyed me--has anyone else out there who had adriamycin have any changes in their cardiac status-- --hope everone else is good-- Laura

BetsyBuzz

Laura,

I had Adriamycin and they have not done a follow up to my initial MUGA test. I can't even recall what they said about it. Sorry... From the sounds of it, since they are going to test you in three months, they are not too concerned. If they were I'm sure they would retest you much sooner. But its ok to FREAK OUT and natural to question your treatment. None of us know if we've made the right choice and a number of fronts but we made the best decision we could at the time.

I'm still frustrated about my achy boob and feel like a total bitch tonight. Not sure why but my hormones feel all amuck. I'm just tired, plus I'm suppose to feel better by now! I've been on antibiotics for 5 day now and have only seen a slight improvement in my tissue. At least it's not Santa Claus red any more. So Elimar...no green and red boob pics from me. Plus the damn thing still hurts. My patience is running out.

On top of it all, I want my hair back. The growing out phase is awful. I keep getting compliments on how cute it looks but I can't stand it. I did better mentally when I was bald. Strange huh? 

I guess everyone is busy with holiday stuff...which is good. Means life is beginning to return to normal again.