**NEW** Starting Chemo March 2009

pinkdove10

I was due for the last chemo on wed.  but instead my port was found infected and i had to go in for the surgery to remove the port.  as of now i am not sure when the last chemo will take place. i am guessing next week after the infection gets better. 

I am glad to see that so many of u have already done the last one.  Congrats!!  

Alyad

I really didn't think I was dehydrated- I drank a bunch yesterday and I have stayed in the AC all week long. I prob did get a little too warm at work- we have one big room ringed by smaller offices- the offices are freezing and the big room where I am is always too warm- even at 8am. Having hot flashes doesn't help. And I had my head covered for the first time in a week (just a thin bandana). I think monday I will have to keep it soaked wet and have my desk fan going (which I did today too). I can't imagine wearing a wig when its like this.

sakura73

Alyad - hope there are no repeats of today's little dramas! You can certainly do without them.

Bunny glad to hear you are doing okay on AC.

pinkdove sorry to hear about your chemo delay.

Well, today is my day to slump. I finally understand what bone pain is, after reading about it on this site for months. And Oh.My.God. it is painful in my legs and feet. Fingers and toes very painful too (thank you for the tea tree oil suggestion - am doing it!) and body still using steroids as an excuse to EAT EAT EAT. 

I went to the funeral of a friend's mother today. She died unexpectedy of heart problems at 71, having previously been treated for BC. First funeral since the diagnosis, and I am ashamed to say that I was far too busy being overwhelmingly scared of dying myself (never had that happen to me at a funeral before - until this year it never occured to me I might die!) to do much in the way of praying for him and his mother.  All those lovely phrases about going into the light, finding eternal refreshment, etc etc are all a bit surreal when you have to think about the possibilty of doing it yourself.

I hate being so maudlin and self-focussed, but today I am so so so tired of being this bald fat freaked out selfish person. I didn't need to get cancer to become a 'better person'. I was a much better person before January 22 this year. Since then I just hate what I am turning into.

bethr

Hi All...

 Sakura...  I know exactly what you mean about the self-absorbtion...  I've been scolding myself alot lately...   the only sense I can make out of it all if exactly what you said...  I'M JUST SO TIRED OF IT ALL!!!  tired of fatigue, tired of no hair, tired of the occassional constipation,  tired, tired, tired... 

One thing that helped me feel better yesterday was..  My youngest sister called to let me know she had been diagnosed with thyroid cancer.   But, so far, thankfully, it looks like they'll be able to address it with surgery only.  I was elated that she, hopefully (notice how I'm not stating any definites here...) will not have to go through chemo and whatever else...  It really helped my day yesterday.

 I hope you all have a great day!

Beth

pinkdove10

i have a lot of muscle fatigue.  i cant walk for long, my thighs ache a lot.  I guess this is because of Taxotere.

Alyad

sakura- so sorry to hear about your friend's mom. I hope we can all rebuild after all we have been through. I feel pretty low lately too and I feel like  there is nowhere to go but up. I know you have months more of treatment, but hopefully things will get easier.

After my episode yesterday, I am staying off work a couple more days. I'll try again monday. There is a company picnic tomorrow, I might go for a bit, but its also supposed to be 98 degrees here-not including the heat index- so we'll see. It is a bbq- pool party at least. But I have reservations about appearing publicly in a swim suit with my lopsided pale self. And I need to find a hat I can wear in the pool. 

didle20Diane

Dayla, sorry to hear about your day yesterday......how was your blood pressure?  after my 3rd TX I drank and drank and drank but when I went in for my nuelasta 2 days later I was apparently way dehydrated and my blood pressure really low 80/50 lying down.  I remember feeling like I was going to pass out but was trying to just get myself out of there....thankfully they wouldn't let me leave and I had to get 2 bags of fluids.  hope you feel better today and try and stay out of the heat.  it is getting hot here too....85 the past few days and miserably humid.  i am sure that goes great with chemo SE's..

didle20Diane

oh no it's actually 95 right now, no wonder i am so darn hot.

Alyad

Diane, it sure is hot! its' probaby pushing 95 here too. after yesterday I am just hyper aware of getting the least bit woozy- I just got back from a shopping trip and even just being outside for a few minutes seems dangerous. when they first took my BP it was about 2 hours after the near fainting and it was 90/60. the nurse took it twice and then my onc took it again and it was 100/60- I think he  just read it differently. Mine is usually on the low side- 110/70 is my norm.

 I'm feeling really paranoid -part of me was afraid to go to sleep last night- didn't help it was the first night by myself in forever and ever- DH is out of town for work. I def didn't get enough sleep last night. Last year one of my co-worker's SIL died out of the blue- she was prone to panic attacks and would try to relax in the tub when she got one- that's where they found her. Even after the autopsy they never figured out what caused her death. One of my DH's college friends recently passed away out of the blue too- she had been having headaches- she was a mail carrier and collapsed on the job- she had an aneurysm. Another one of my high school friend's DS also passed of the same thing 10 years ago when she was 21. I know I'm being really negative and dwelling on bad things. I am glad I don't have another round of chemo, I don't know if my body could handle it.

crusader1

H i All,

Dayla..too bad to hear about your problems

No hot weather in NY just rain, rain rain.

Eight weeks out of chemo and I am proud of my stubble. Would like to share some photos with you all..

""

Can't really go bare but it is nice to see it is growing..

Have a great weekend.

Hugs to all..

Francine

Alyad

Francine! Whoo-hoo ! HAIR!!! It looks like you you have a really good start, keep us updated!

Another fun youtube video- this hiker from New Zealand took a pic of himself every morning as he hiked the 2600 mile Pacific Crest Trail- he put the pics together to make this and set it to music-you can watch his beard and hair grow. I am thinking of taking a pic of myself every day as my hair grows and doing something similar.

 http://www.youtube.com/watch?v=y1lFLNIO6ps

WLL

SAKURA-- I had my second treatment of Taxol and Herceptin today. My Oncologist suggesed I take Glutasolve, its a powder you mix with food or drink twice a day for aches and pains and numbness in the fingers and feet.  I have not had any problems (knocking on wood). 

Dawnmrn1

Francine!  You look wonderful!!! You are giving me hope!

Alyad!  Take it easy, don't get too hot with that low BP, you'll win a trip to the ER! Stay out of the sun, girlie!!!

Beth! Sorry to hear about your sister!

Have a Great Weekend,All!  Dawn 

marshall2000

HEY TO ALL:  I feel very selfish, i never get on here and comment on anyone elses posts anymore, sorry, i do read daily or at least every other day and think of all of you on a regular basis, i promise to catch up soon.If it wasn't for you girls i don't know I how I would have kept my sanity intact.  I had my last chemo 6/18, thank goodness that is done, had my follow up mri and the results are no evidence of any cancer at all in either breast. Yeah, i was very happy with that, my bc called me at home and told me. i am still proceeding with the lump and rads of course, i go tues morning for mammo and u/s and will schedule lump and oopherectomy to be done together. I haven't been feeling well at all after this last tx. I thought i was just having a rough one and then my son developed a high fever, sore glands, massive fatigue, and really bad chills, took him to the doctor and he has mono, on of my co-workers also has mone, i have been running a low grade temp but i usually do with this friggin hot flashes but it spiked up twice today so i called the onc and have an appointment on monday, i hope i don't have mono, but i tell you what i am not putting off any of my tx .I called in at work this week so i have been off since last thursday with my scheduled days offf, i went in today to talk to my boss and found out that there has been a big shake-up in the larger hospital that owns ours and they are cutting hours all over the place. they are expecting us to do our job in the er with 3 less nurses daily and they will put 3 nurses on call daily(at $3 hr). Well needless to say, i have worked all through chemo with the help of my co-workers, but i have a physically and mentally challenging position that i cannot do short staffed, i also can't afford to be put on call and make 3 bucks an hour, and i used up most of my pto hours between my surgery in december, my mother's illness, and a day here and there during chemo. Sooo, i went ahead and took medical leave, it will give me time to heal and de-stress(is that a word) a little, plus my short term disability will be more than i am making right now since they had already cut us all to 36 hours a week. I think I was determined to be the tough one that worked the whole way through, i should have taken leave a month ago. I actually feel relieved, strange. i was scheduled to work tomorrow but now i am going to a friends house and catch up on girl talk in her new pool. Woo-hoo, I need some me time.

so now i won't renege on my promise to catch up and stay caught up, if you don't hear from me feel free to publicly bitch me out. LOL

Love to all, Michelle

marshall2000

ALYAD: aRE YOU SURE IT WAS THE OUTSIDE HEAT AND YOUR BP OR WAS IT THE HOTTIES PUTTING THE TENT UP AND DOWN THAT YOU WERE TALKING ABOUT.HA HA

FRANCINE: YOUR HAIR IS AWESOME. IT LOOKS REALLY SOFT TOO. I HAVE 5 O'CLOCK SHADOW ON MY HEAD, BARELY, BUT I CAN SEE IT AND FEEL IT, BARELY.

SEE I STARTED ALREADY!

marshall2000

ALYAD: YOU AND EVERYONE ELSE ON THIS BOARD HAVE JUST EXPERIENCED A PRIME EXAMPLE OF COMPLETE CHEMO BRAIN, THE TENT AND THE HOTTIES BELONG TO ONE OF OUR SISTERS ON ANOTHER THREAD, WHOOPS! I APOLOGIZE. PLEASE GET TO FEELING BETTER, AND A WOPRD OF ADVISE IF YOUR BP IS RUNNING LOW, IN ADDITION TO TAKING IT EASY, RESTING, AND STAYING HYDRATED, BE CAUTIOUS WITH SUDDEN POSITION CHANGES, SOMETIMES YOUR BODY NEEDS A COUPLE OF SECONDS TO ADJUST THE CIRCULATION AND CAN MAKE YOU INCREDIBLY DIZZY AND LIGHT-HEADED EVEN TO THE POINT OF PASSING OUT. IF YOU PASS OUT AND HIT YOUR HEAD IT WILL SCREW UP YOUR HAIR PICTURE PLANS AND NONE OF US WANT THAT.

HOPE YOU ARE BETTER SOON AND I HOPE YOUR DH ISN'T GONE LONG

HUGS, MICHELLE

Luv2sing

Okay.

Had my 3rd Taxol tx today, can't sleep and have been trying for the last two hours to post pictures from photobucket, but darn thing won't let me upload any new pictures.  I'm attempting to link my photos from facebook and see what happens ... so here goes.  If you click on the links they should work.  If not, just click on my Profile at the top of the Facebook page and then view my albums.  I'll work on the photobucket thing tomorrow when I it's not storming.

http://www.facebook.com/photo.php?pid=30183106&l=2a9bb478df&id=1636722113

Picture taken 5/9/09 around 3rd A/C tx

http://www.facebook.com/photo.php?pid=30183107&l=11d4859c91&id=1636722113

Picture taken 6/19/09 after 2nd Taxol tx which started 6/8

Just wanted to share the regrowth with everyone, although the eyebrows are thinning (smile).

Will be back tomorrow to post as a thunderstorm is approaching.  Good night ... Hugs and well wishes to all!!

pinkdove10

Hey

Francine- u give me hope that someday i will also get my hair back.  Good luck.

 Due to the infected port , my LAST chemo has already been delayed by a week.  Lets see when the onco says its ok to go ahead and take it.

No periods yet.  Is anybody else in late 30's.  Taken 4xEC and now 4xtaxotere.  Did u start getting your periods back, eventually.  Or should i say that they r gone for good.  Pls let me know

 Uma

buddy1

DOES ANYONE KNOW IF ITS OK TO SWIM IN POOLS WHILEGETTING CHEMO.  WITH A PORT   I WOULD THINK THE PORT IS NO PROBLEM BECAUSE IT GETS WET IN TEH SHOWER.  JUST WONDERING AOBUT THE CHLORINE IN THE POOL.

WLL

LUV2SING--- I am on my second Taxol and I have a hard time sleeping myself.  Have you had any other SE? 

buddy1---I was going to go swimming laster tonight when sun goes down and I have a port. I have not really even thought about the chlorine, I guess it could dry the skin out.  I was more worried about the sun. 

 PINKDOVE10--- I am 40 and they told me it kick me in to early menopause.

buddy1

thanks  i was just making sure it wouldnt do anything with my chemo.  i am just thinking into things too much

Alyad

I haven't been told anything about not swimming with a port- I'm sure it's fine. I have heard not to swim in chlorine while doing rads since its hard on the skin

Pinkdove  Here is a link to a thread about getting your period back from the Under 40 section-lots of women have written in with how long it took them, if they did. it seems like docs say if you haven't gotten back in a year , you prob won't, but there are several women on there who have gotten it back even after much longer time. It seems like 6-9 months is the average. Some women continued to get it even through chemo. It seems like the younger you are the more likely you are to get it back, but there are women on there over 40 who did get it back.

 I finished the cycle I had started before chemo- got that first period right on time a couple weeks after chemo, but since then- not a thing and having dryness and hot flashes- weight gain too. I lost weight the first round but gained on  2-5, but lost on this last one. It might also be figuring out what I can stand to eat and that I felt better if I kept my stomach full  tho:) I'm 35 FWIW. I would like to get mine back cause I miss my mojo, but other than that I wouldn't miss it.

http://community.breastcancer.org/forum/27/topic/736139?page=1#idx_1

buddy1

ALYAD  THANKS  SO MUCH  I WAS JUST WORRIED ABOUT SOME CHEMO CHLORINE REACTION.

crusader1

Buddy,

Just love the new avatar..Great eyes...

Francine

nasharayne

Hello Ladies,

Just checking in.  I've been reading every now and then.  I was feeling good and didn't want to think about cancer.  But, now I'm back and caught up.  Last chemo is Tuesday but, I have herceptin still til March. 

jdeking - When you got your BRCA testing did they tell you they would notify you if you had to pay more than $375?  That's how mine went.  Maybe that may be your way out of paying the full $3000.

didle20Diane

nasharayne and dayla,  that is exactly what happened to me, too.  if it was going to be more than 375 I would get a call.  that was 4 months ago now and they tested me for brca 1 and 2 and 2 other tests for a colon cancer gene that i was concerned about.  now the oncotype is another story....they won't pay for it but it doesn't really matter anyway if they did because it is out of network and I would have to pay the first 2,000 anyway.  i never go out of network since i have a ppo. 

I have Anthem....online service is closed now but I am going to look up the charges for the gene testing, nuelasta and my chemo treatments.  I am blessed that i only have to pay the first 1200 annually (we also pay the monthly premium of 350) but for anyone that has to pay for some of these treatments out of pocket i would suggest negotiating what you can.  i am stunned at what i see on the boards.  nuelasta costing 7K?????  who has that kind of $ lying around?

good luck

crusader1

Hi,

I had to sign that if my insurance didn't pay for the Braca I would be responsible for 600.00. but they paid. Unfortunately the place where I went did genetic counseling before. I am still trying to get my insurance to pay for that. Also $600 .. I had mine done in November.

My insurance paid about 3000 dollars for each of my  chemos as well as for my Neulasta shots. We check payments on line. My oncologist was in Network.

We are thankful that we have good insurance as our out of pocket expenses have been minimal .

Hugs to All..

Francine

ChrisC433

My BRCA test was also the same.  I had to sign a paper that said that the test would not be put through if I had to pay more than $300.  The insurance company would have to notify me.  They did send me a letter approving the test.

My neulasta shots are billed for about $17,400.  The insurance company pays $9600 for each.  I wonder what it actually cost the hospital.  My chemo comes to $10,000 each time, but they don't get paid the full amount.  I have only paid $40 copay each time I saw the onc. doc.  I can't imagine not having insurance!

ccbaby

Wow Chris, I thought my insurance bill for the neulasta shot was high, but yours is a lot higher! My insurance is charged $7,200 for neulasta, and $13,650 for chemo and herceptin. My insurance paid all but $6.00 for the BRCA test. And yes, I am very fortunate to have good insurance. I don't know how people who don't have insurance make it.

PattiB

My Facility charged approx $15,000 and $30,000 alternately for the 4 treatments.  Don't quite get why 2 treatment were $30,000 and 2 were $15,000, since it seemed that they did the same thing each time.  They accepted what my insurance paid, which was significantly less (looked last week and can't remember exact $).  I paid $15.00 copay and haven't been billed anything else.  Didn't check into the prescription section to see what the actual charge was for Neulasta but I paid $10.00 for each shot (4 total). I didn't pay anything for the Oncotype and didn't have any BRCA test since my BC is considered random not hereditary.  My husband is self employed and I did stay home until my DD was in 6th grade, we had minimal Insurance then because of the expense. I went back to work 9 years ago mainly for the great insurance plans they offer.