Starting chemo January 2009?

shockedat39

Patti,

Glad you're feeling well!  I'm on day 5 after 3rd tx and feeling pretty good too..a little loopy this morning but I finally got a good night's sleep last night so that is really helping.  I asked my onc about feeling so good (and the fact that my hair is still pretty much hanging on) and does that mean it's not working?  She said, no, that means you and your hair are tough, LOL.

Stay well and feel good!

Diane

ddlatt

berkeleykim - when i go for WBC counts, they just do a little prick on my finger, takes two seconds, no pain. maybe your nurse can do that for you instead of whatever they're doing to bruise your arm!

glad everyone is doing so well!  my #3tx of AC is tomorrow, so today i'm drinking my minimum of 90oz of water (yuck), which i continue for a week, and starting to double up on the protein.  it will be 3 down,5 to go. i look at the calendar and can hardly wait until i can turn the page to may, when chemo will be behind me. hoping taxol will be as easy as AC is (so far).

ktym

This has been kind of a quiet thread lately.  Hoping that means everyone is feeling well and therefore out and about and away from the computer.  My Mom's flying in to stay for a few days.  Timed it for when I knew I'd be feeling well before my next round.  Can't wait.  We always have a great time catching up on family and world news.  We'll probably drive my husband straight out of the house : )

Hope you all are well, wanted to check in  it just seems nice to do it on a day when I'm felling well.  Don't know if anyone caught it, but USA today ran a great short piece on what to say (and not say) when a friend tells you they have cancer. 

PLUTZ

Hi everyone. Hope you are all  well. I'm still a little achy and tired today. this 2nd trmt really did me in. I haven't been sleeping well either. I think its mostly cuz my head hurts. Found lots of hair on my pillow again. My hair is very thick, but all I have to do is run my fingers through it and a bunch of strands come out. I ordered some sleep caps. They should be in today or tomorrow. Hopefully it helps with the sleeping. I also agree with those of you about reading the bad stuff. When I found out I had ibc, I went right to the web to read about it. I mentioned it to the nurse that was with me that day and she also said DO NOT READ THAT STUFF! we're going through enough as it is. We must all stay positive and our bodies are different. I have not been depressed in a long while. I haven't cried. I'm feeling good. I have a long road ahead of me. Haven't even had surgery yet, so I am keeping my spirit up and thinking good thoughts. All of you have a good day.

jrgolomb

I am having a harder time with tx#2.  I just feel more nauseated probably because I took the emend only 30 mins before the chemo and now am playing catch up.  this is not fun.  I willmake sure the next time the nurse times the emend at a better time.....Hugs to all....Trying to cope and make it thru the day at work...

rsben70

2nd tx was harder for me too. really kicked me to the curb, still trying to get back.

the emend did work for the nausea, at least.

cancer sucks............trying to get through work, since it is only 2 days this week...

sweeeeetpam

Hi there,

                      I would not worry about the chemo not working.......I did chemo Before my surgery and my whole tumor dissappeared after two A/c...........but so did my hair he,he,he!!!

I two am back in a classroom to help out my school I am with 12 two years and that is where I got my cold!!

        Just counting down the hours until thrusday morning..wishing you all luck this week!! Pammie

BerkeleyKim

Hi all:

Ddlatt--thanks for the idea. I'm going to ask about the finger prick. I didn't bruise from yesterday's test, but the RN was surprised at the bruise from last Thurs. I guess I'm good to go this Thurs. forlast AC.  Took 2 hours just to tell me to go on home. Good luck tomorrow.

My arm is doing better. I love the PT Lymphedema people. Went for my massage yesterday and my left arm is almost the size of my right and feels so much better.

Feel fine today and am so happy my sister is coming in for my last AC treatment that I feel like crying. I am very emotional again. I cry when I think about how much effort all my co-workers have taken to make my family dinners. My old school gardening partner is coming over with her tools to spruce my yard up and taking me out to breakfast tomorrow. I feel so lucky.

I cry when I think about our good friend who was hit by a MUNI train in SF on Sun. His wife works for my  husband and co-ordinated all the support to our family from his co-workers after our house fire and his stroke. He is in critical care--but when my husband called his wife last night she asked how I was. I'm really feeling the blessings and curses of being human.

Well, I've got to do some of the editing work I've continued on the side--still dragging my feet about going back to teaching. The med. people have scared me about getting sick, and I just can't see how I can predict how I'll feel. I admire all you teachers getting back. I'd be too tired to stand all day and my butt hurts too much to sit for too long.  

Renrel

It looks like my dizziness is probably benin positional vertigo which I have had in the past.  A bit of calcium deposit breaks off in the ear and sends screwy messages to the brain about position.  The Taxotere may have set it off.  My nurse suggested staying well hydrated and she is calling in some medication but it would also make me tired so I don't know if I will bother. 

I had my blood drawn for pre chemo labs today and then tried on wigs but I could not pick one. I need someone to come with me. The same with all the scarfs I tried on.  At $20 or more each I am not jumping at any of them.  The lady said alot of woman go to fabric stores, get two remnents that they like and sew them together, or just get that fake sew stuff that glues a hem with an iron.  That does not sound to hard.  It could be a fun project.

 DS was coughing this morning. A barking crup like cough so we kept him home.  DH stayed with him.  When I could a bit after noon he said DS had not coughed in quite a while.  I probable need to wear a mask around him for a day or two though.  So annoying. 

Well that it for me now. I am at the cancer resource room at the hospital.  I need to empty the bladder from all that dang water I need to drink for the chemo tomorrow, get a bite to eat and head home by subway/train. 

lisalisa

Just got back from my oncologist.  My WBC was 17!!!  woohoo!  that is great for day 8.  I'm safe to be out and about now. 

 But, I'm anemic.   The nurse practitioner is going to run more thorough tests (they did a fast cbc) and get back to me.  I will likely need to do something about it.  I was also anemic each time I was pregnant.

 I'm NOT a beef eater...don't care for it and don't think its healthy for an ER+ cancer patient.  So, beyond spinach, any other recos?  I hate the idea of going on iron pills.....tmi, but they make me constipated.  any advice?

thanks!

BerkeleyKim

Wow, LIsa. That's great!! I'm lucky if I get mine up to 5--and that's even before chemo!  I'm sure if you google iron rich foods you'll find something you like. I like eggs, spinach, cream of wheat, lentils. 

I think beef is ok for ER+ if you get free-range, organic beef that hasn't been fed hormones. I 'm not a big red-meat fan either.

kt57

Holtbolt:  Hope you are doing well.  #3 for me on Thursday. Did you ask about 4 vs. 6 sycles? 

jrgolomb

Hello Jewels.  Remember how I mentioned my one kitty follows me everywhere and sits by me most of the time, especially after surgery?  Well, I suppose she has decided I am okay because now she wakes me up at 3 am and wants food.  Now of course, I can't get back to sleep as she snores and sleeps on her most comfortable arrangement by my head. 

That being said, I am wide awake and started looking around on this site.  I noticed information about the GAIL score and wonder if anyone knows what their score is?  I think I am probably one of those who needs my other breast taken off and I kind of wonder why it never happened in the first place.  I know my bs said I should have mris no matter what, but gosh, I have idc, ilc and it's multifocal, wouldn't you think it's a no brainer?  I suppose these questions are what we all ask, but its almost 4 am, I know I should probably be in bed, but  who else understands these questions but all of you?  AND.....who else but all of you understand why I am awake thinking these questions? Sigh, darn cat.  She is lucky she is twelve years old and it's raining outside.  Next wake up call and she is out to search for mice!

ktym

Plutz, rsben70, and Jess, hope you're feeling better today.  Berkley Kim, I hope your friend is doing better.  I haven't worked since starting this either.  I do some work from home on good days, but my full time job is by the wayside.  I really admire those who can do it.

Renrel good luck today, and here's hoping DS stays well. The hair options ended up too much for me.  I bought a lot of hats, didn't like the look of scarves.  Hate the wig, it hasn't come out of the box it came in.  So, I've just been embracing the bald.  

Lisalisa, share your avoidance of beef and problem with iron.  I did find a suplement called slow iron that is slightly better with the constipation issues--but still not great.  The BBC website today just had an article telling how eggs aren't as bad for your diet as people think and its ok to be eating more of them.  Eggs I can do.

shockedat39

Hi Jewels,

I hope everyone is feeling ok today.  Lisalisa, I hope you can find a solution to your iron issues

I'm doing ok today and feeling better from neu-bastard but am smelling the chemi-stink on myself again.  I brush my teeth about 5 times a day and try to put on some clean-smelling lotion (the sweet stuff makes it worse).  I guess it's the combo of the chemo drugs, Senekot, Advil, anti-nausea meds, etc. all coming out at once.  I can't stand it!  Still, if that's the worst part I guess I'm pretty lucky.

At least it's consistent.  By day 6 I'm smelly and praying that it works this go 'round so I don't have to do it again!

((HUGS ALL)) Have a wonderful day!

Diane

rsben70

hi all hope everyone is well,  feeling ok today just get worn out just doing little things.  getting ready for part 2 of my 2nd tx tomorrow. so another crummy weekend.  

constipations issues are awful. 

hugs to all, have a great day.

REKoz

Morning Jewels-

Renrel-I went to the AMC Look Good Feel Better program the other night. They showed a great trick for head covering with a mans undershirt. I am going to look in the dollar stores for t shirts in different colors. They cut off right under the arms of an x-tra large size so all thats left is the torso. Open the shirt in a circle and twist the entire thing. Then take one section to your forhead and open it over your head all the while holding the rest of the twisted part behind you. Then you fold one rear twist over the other and bring around to front (like you would do with a towel for when you had hair and washed it!) It looks really good and being cotton is very comfy. I hope you can visualize that. It might work for you.

My chemo is weekly x 3 with one week off in between.  On Friday (the 13th so friggin appropriate), I will begin the second round of 3 (of 4 total). I DREAD it as I have been feeling almost like my old self for a week now. I really, really don't want to go back...whaa whaa. This does indeed stink more than any stink I will be making next week!

Enjoy the day. It's beautiful here in the East. A huge tease for spring.

Ellen

ladyjane54

ddlatt:  Guess we are on the same schedule except I am one treatment ahead.  I have #4 AC next Thurs. and then 4 Taxetere to go.  I too am beginning to hope the switch to the new drug does not cause problems.  So far I am able to get to work and be a little active around the house.  I save most of my energy for work and walks and I am also counting the days until May.  Good luck with #3 will be thinking of you.

Jess-if it is any help, tx 2 was the worse for me and then 3 was a breeze.  Give yourself the love you need and be kind to yourself.  You have got to love that Emend though.  I thank god for it everyday and those wonderful people who took the time to invent it.  Bless them all.

Hey Lisa I also have been gettnig progressively more anemic with each blood draw, but my dr. is not real concerned yet.  He said that is why I probably feel so tired all the time.  I swear I do not sit down for five minutes and I fall asleep.  I am in bed at 8 every night and wake up three and four times - all hours and I have no cat to blame.  It is not too annoying on weekends because I just get up for a few hours and then I easily go back to sleep, but on weeknights I don't like to get up because I have to get up early for work and I lie there trying hard to get back to sleep.  Does not work most of the time as mind starts racing.

Diane:  You do have tough hair!  Has it thinned out and just not fallen out completely or have you missed that curse all together. I am happy for you.  I have gotten use to not having hair and I actually went to the mall last weekend in just a ballcap and never once felt like I was being stared at.  I am glad someone here has escaped the hair loss though.  Lets hope it is not just late in coming.

Going for WBC count this afternoon.  I think it will be high like yours Lisa because I feel good. Not even feeling very tired today.  Only woke up once last night.

Anyone having trouble with weight loss.  I have lost about 16 lbs.  I am not concerned because I feel I could stand to lose a few but nurse and Dr. are not to happy.  I love gettting dressed in my loose pants!!!  Gotta look for the positives..

Patti

shockedat39

Patti,

It's thinned for sure and receding a bit but mostly where the wig and hats are rubbing it!  The rest is hanging strong.  I wish I could escape it altogether but I doubt I will   I wonder if getting the Sinead O'Connor look and removing some of the weight has just helped it hang around longer. 

This is so shallow, but I was thrilled this morning because an extremely adorable gentleman in the next car checked me out when I was bringing my daughter to school!  LOL, it's the little things, right?  Just when I was feeling funky and stinky.  It was a great pick me up.  I told my DH and he was very happy for me.  Sigh...I'm so glad he gets it!  Maybe I will keep the wig.

Patti, good luck with your WBC count.  Does everyone get this test every time?  I only had it after first tx..

ddlatt

officially my memory is gone. this has never, ever happened to me. chemo brain is awful! i met with my med onc yesterday and we talked about taxol. he asked me some questions about IV versus pills, i made a decision, and then later i realized i had forgotten every single thing he said and what my decision was! he doesn't allow any tape-recording (bastard) of the meetings, although next time i'll tape-record anyway and just hide the tiny recorder. i had to call the office and ask all over again. very upsetting!

question about taxol and decadron: my med onc said i have the choice of having 10mg decadron in the drip with taxol, OR less in the drip and take pills at home (before, the day of, and the day after chemo). i am now taking 10mg of decadron in my AC drip, so i decided to just stick with the 10mg in the trip and not take decadron pills.  have any of you had any experience with decadron in the IV with taxol, or with the pills??

i have chemo today in 3 hours.  yuck.

best wishes to everyone this week!

jrgolomb

ddlatt-- DECadron stuff.I have just had the iv drip and it went well first tx, second tx, they wanted to give me pills plus and it was a day after-nurse forgot to give me the pill the day of, so I never took it.  I am paranoid about the jitters and sleeplessness people talk about.  I suspect that may have been part of the nausea issue I've had this time around? 

I stuggle with the chemo fog----but then again, I always forget some conversations, especially with doctors....

GOODLUCK DDLATT--one more down!!!!!!!!!!!!!!!

ddlatt

jrgolomb - thanks!  why did they want to switch to pills for the second tx? so for tx3, will you be having decadron in drip or in pills? i'm on AC right now, i haven't had any nausea so far, but i take one kytril pill ($40 each--grrrr, even with insurance) the night of chemo, then two every twelve hours for the next three days, plus compazine every six hours for 3 days. the only "bad" side effects i've had so far with chemo (well, besides the fatigue and chemo brain!) is feeling basically crummy for three days after chemo.

BerkeleyKim

Well--glad to hear everyone's plugging away. Good luck today, Ddlatt. I follow tomorrow (with several of you I know!!!).

 I called to refill my Emend last night---INSURANCE CANCELLED!!!  WTF. I'm spending today with the school district trying to figure this out. Of course Health Not (Whopps, Net) claims no responsibility. No notifiication. At least my husband has Health Net too. Oh, and we're supposed to keep stress level down?

I'd rather take less steroids. I just get it in my AC drip. Why do we need more with Taxol?

rsben70

i am on taxoterre and take the decadron, was taking it day before day of and day after have added and extra day because of SEs, keeping it in your system seems to help some but watch out for the crash.

yeah try keeping stress levels down when you ins keeps saying why do you need this, no you cant do that..

PLUTZ

Hi everyone. I'm almost back to normal today. Couldn't sleep worth a darn again. I'm really thinking about shaving the rest of my hair. It hurts when I try to sleep. My wig is not comfortable. I may try to make a couple of scarves. I'm feeling ok otherwise except my hemorroid is bothering me and I'm not even constipated or have diarrea. My doctor said  I can eat pretty much anything. Nothing is tasting good these days.I'm actually giving up my sweets because I made brownies and they tasted awful. My girls said they were delicious, so I know its the taste buds going. Does anyone eat anything that actually tastes decent? Take care and hope everyone is getting through this week.

Dx 1/2/2009, IBC, Stage IIIb, Grade 3, ER+/PR+, HER2-

brendafromflorida

Hi everyone, I am finally feeling a bit better.  Haven't been posting much because I have just been too wiped out.   Ladyjane, I have also lost weight.   10 lbs. between my 2nd & 3rd treatments.  Like you, my Dr. as not pleased.  I was elated.   They don't want me to lose any more.  I am also anemic and have been trying to do the iron rich foods.  I have found that raisins, dried dates and dried apricots are good.  Also Special K cereal.   I was also told to drink Instant Breakfast in between meals. 

My youngest son (38) has been here with me for the last week and he used to be a chef.  He has been cooking all this great food and I am trying to eat, but nothing tastes good to me.  He goes home tomorrow and I will really be sad to see him go.  He has 2 boys and doesn't want to be away from them for too long.   He is divorced and he has custody on the weekends.  

I hope everyone is doing OK and will try to catch up on all the recent posts since I am feeling a bit better now.   

GryffinSong

Hi all,

I am SO far behind on the net, I apologize for not having read through the half of the thread that I hadn't read earlier.

I had my first chemo treatment a week ago. So far I'm ok. Some queasy feelings, but no out-and-out nausea. I feel tired. This morning I woke with swollen gums and a mild fever, but not up to the 100.4 threshold where they want to do anything about it.

I had a fair amount of pain from the Neulasta shot, mostly in my neck. But feel pretty lucky overall.

My treatment regimen is the "dose-dense" AC every 2 weeks for 4 treatments, then taxol every two weeks for 4 treatments. The process was fine. I thought I was going to have to do it alone, but a friend showed up in the parking lot and stayed with me. Yay for friends!!!

I also had trouble with my first port. It had a kink in the line, and nothing could get through it, so I had to have another surgery to replace it. Surgery was last tuesday, chemo the next day.

I have to go to town today to refill a prescription (so I'm at the library on the way). My computer seems to be shot, so unfortunately I can't read/write as much as I'd like.

I plan to shave my head this sunday with a friend. My mom and several friends have made hats for me, and although I'm dreading being hairless, I feel so blessed for the folks who are gifting me with hats to cheer me up and keep me warm and protected.

I'll make a rather vague offer, because I know I'll have way more hats than I'll need. One friend is sending me NINE hats!!! If anyone here is tight on funds and needs a hat to keep their noggin warm, please PM me. I will gladly pass on a few "spares" to those in need. Please use the PM rather than posting a reply, simply because I can't keep up and might miss it.

Hugs to all, and I know we can do this!!!

Renrel

Hi all.  Infusion 2 went well today. I made myself some fun headwear - I fuzzy pink hat with a blue turban wrapped around it.  Weird but fun and colorful and it matched my blue clothes and fuzzy pink chemo slippers.  I gave a donation to a homeless shelter person on my way into the hosptial and when I looked at the licence plate in front of me and it said something about Karmic.  Fitting.  Before infusion I met with my nurse and with a radiologist. Yeah - no radiation for me!  The cons outway the pros.  At infusion I had fun.  First I had a 20 minutes accupuncture, needles in my ears for my back pain and verigo, I missed the massage lady because I was so late.  Then I made a nice box for my son with the art therapy lady.  And she left me some fun modeling clay to play with.  My nurse was on vacation so I had a new also very nice nurse.  We chatted alot and she gave me a hug when I left.  I watched a video someone gave me - Crazy Sexy Cancer which was good, though I cryed a few places which made my make up run.  Now I am in the cancer resource room typing away till its time to pick up my son.  They also supplied a nice lunch today - Chicken rice soup, turkey sandwhich, custard, ice cream, cookies and a piece of lindit chocolet some patient brough in a box of.

Iron tip - I noticed last night that both dryed apricots and dark 72% caco chocolet from Trader Joes have alot of iron - Dip one in the other and you have a really nice treat that while a bit high in fat and calories is also very high in fiber, iron and protein and I think vitamin A too. 

OK time for me to go.  I will check in later.

jrgolomb

rsben70--I will be on taxotere tx#4.  What is it like? 

Hugs to all the awesome JJS!!!!!!!

Renrel

ddlat- I take the D- steroid in pill form.  2 4mg morning and evening the day before, 2 4mg morning and evening day off and another 4mg just before chemo with my zofran, 2 4mg mornign and evening day after, 1 4 mg pill morning of the 2nd day after and a 1/2 pill the morning of the third day. I have not had any problem.  I do not notice a buzz and with a adavan sleep pretty well.  I was up alot those first few days but it was with gas and constipation issues not a buzz. 

 Also I think someone had asked about the reason for the drug and I said it was for nausea but I think it is also to avoid alergic reactions and that may be the bigger reason for it.

Berkley Kim - Insurance canceled!!! Shit that is major.  I hope you can get it worked out.  Are you on an unpaid leave?  Do you have to pay for it on you own while on leave?  I know that I had to do that when I was on an extended materity leave.  I had to send in my portion that the normally would take out of my pay check.  

 Pluzt - What is your scarf plan?  I am not usually crafty but was thinking of trying the rements hemmed together with that iron on fake sew stuff that my boutique lady suggested.