November 2009-Starting Chemo

BeccaS

Hi All,

I got my 2nd full TX on Friday 11/27. Onc added neulasta and antibiotics to get me through this round as well as something for heartburn. So far I am staying ahead of the curve with anti-nausea meds, so not too bad... yet. Last time the first couple of days were OK too and then... so we shall see. 

I have used creamy desitin (like for babies) on my sore bottom and also a tube called Moisture Barrier based on aloe, Vit A & D that is very soothing. It's made for adults who are incontinent. 

My naturopath and acupuncturists say the acupuncture can really help with bone pain. It's hard to say but I do feel it is important to me to do something really positive healing-wise while during all this scouring we are doing. It does mean more appointments to keep up with... but forces me out the door and I enjoy the positive atmosphere and support. 

I work a little intermittently --- managing helath care so far has been a pretty full time job in itself. Hats off to those of you who can keep up on so many fronts.

Best wishes to each of us in all that we are facing.

Melinda41

Cafelovr, BoxerSue, Mabelle : I think we started a day apart and I was wondering what your hair situation is? My first treatment was the 16th and I had already cut my hair to 1-2 inches long. It is loosening up on my head, I can run my fingers through it and a few strands come out. My "netherland" is coming out faster. I have a vision that I am going to go to sleep and wake up bald, all my hair stays on my pillow when I sit up!

I had a crappy mental day today, nothing physical, just a panicky, reality setting in kinda day. Took a valium and decided to give my brain a break by reading about the "Paul McCartney died and was replaced" conspiracy theory. No telling how many brain cells died during that vacation from reality.

I need to be productive this coming week, shopping and decorating for the holidays. The following week is chemo week and I will be useless and then it will be holiday crunch time. I see the oncologist tomorrow to check my blood work. I hope I am good since I did holiday family stuff and all the kids had the crud, it was like being in a petri dish of funkiness.

Alicia and Linda: Good luck tomorrow, you are getting closer and closer to the end of this phase!

Cafelovr

Melinda, I haven't lost any hair yet...anywhere I cut mine 4 days after my 1st tx down to about 1/2 inch. Knowing my luck, I cut if for nothing I have very thick, coarse hair. Be careful in not catching that crud!

LVLinda & Alicia...Good luck tomorrow. I'll be thinking of you. I'll be in the catbird seat on Tuesday. BoxerSue...You're on for Tuesday too, aren't you! I'll be with you in spirit!

Doronet, I've lived in GSO for almost 10 years and work for GTCC. I love the area, but it has changed sooo much. It has almost outgrown itself. How long has it been since you were here? I'm originally from FL and miss it during the winter months

littlebird75

Well I'm in the hospital tonight. My WBC was 1 and my Absolute Neutrophils is .1. I've been feeling terrible (as I posted before) and today I woke after 13 hours of sleeping to a fever of 101. I have "neutropenic fever". They haven't been able to readily identify a specific source of infection - if indeed I have an infection. However they are administering IV fluids and antibiotics and keeping me "steril" - gowns, gloves, masks in the room and going to do more blood work tomorow. They did blood cultures as well which we should find out about tomorrow. Send good thoughts to me! At least they have wifi.

Cafelovr

LittleBird...be strong...I'm with you in cyberspace giving you big hugs. NC is a long way from WA, but you are not alone! We're all there with you...

 Kisses...Linda J

JustmeAlicia

Littlebird ~ I am so sorry you are in the hospital sick.  I hope the antibiotics work quickly and your WBC gets up.  No wonder you were feeling so terrible.  Big Healing Hugs ...

Thanks for the well wishes for TX#3 today.  Ugh ~ I so dread it.

Good luck to everyone today.  And I hope everyone else is feeling as good as can be expected.

Alicia

Melinda41

Littlebird: I am so sorry you are in the hospital and I hope they can fihure this out and get you back on track. I hope this comes out right....This should show you that you are NOT being a wimp or a downer, something bad was happening and you needed medical attention. Now they can get your WBCs up and come up with a plan to prevent this from happening again.

(((littlebird)))

littlebird75

Thanks everyone.

 I've given up on sleep. I got about an hour's worth over night. Pain, stress, frustration. My port worked for a while - but only when I layed back. If I stood up or was propped up at a 90 degree angle it would stop. About 3 a.m. it really started hurting - tender and the tape had come off. I called for the RN to reatach it. Instead she thought I was asking for pain meds....NO, I just need this taped back down. Instead she ended up having to take it out all together. It then took two other nurses to start a regular IV. By then I'm crying - crying because I hurt, crying because my friends and family are home snug in their beds and I can't even call, crying because I'm so frustrated with the trouble I've had with this port....But of course the nurse helping thinks I'm scared of needles - which is not the case.

They got an IV started about an hour later - close to 5 a.m.Finally got pain medicine though the back pain is only mildly helped by that, my headache feels better, my throat and gums feel a little better. The nurse tells me she thinks the dr. is going to order a CT on my head to find out where the pain, pressure is coming from. 

I'm going to be bored so I hope you guys don't mind frequent updates as I am sitting here. 

BoxerSue

Good Morning All,

Thanksgiving was nice but I'm glad it's over.  Need these next 4 weeks to rest up for Christmas.

Melinda -  Yes, I had my first Tx on 11/17.  That was a Tuesday.  I have always worn my hair short anyway but on the following Sunday morning I woke up with the hair on the left side of my head broken off and very fuzzy.  I sleep on my left side.  I fussed with it on Sunday and Monday and it just upset me more and more.  So on Tuesday 11/24 my husband went with me to my hairdresser and she shaved it off for me.  It was very emotional - I wouldn't watch while she did it.  My dear husband pulled a chair close and held my hand.  He made jokes about having his head shaved when he went into the service.  I can't really remember what he was saying but he had me, my hairdresser and everyone else in the shop in stitches.  They both told me what a great head I had - no lump, no bumps.  I still wouldn't look at it - so we plopped my wig on my head and off we went.  Dear husband insisted that we stop for dinner.  I finally agreed - I just think he wanted to be with me the first time I wore the wig in public.  At home I have a couple of caps that I wear around the house - but back in the privacy of our bedroom I let it all hang out.  It's actually quite comfortable being 'nekkid' on top.  It did take me 2 or 3 days to actually look at myself in the mirror.

Littlebird -  I'm thinking of you and praying, too.  Hope things get better very quickly.  I know I'm constantly taking my temp.  I'm glad you are in the hospital where they can get things under control.

Still have the headache - although not nearly what it was.

Wednesday before Thanksgiving I was so busy cooking and cleaning I wore myself out.  I started having numbness in my left thigh - between my hip and my knee - it just made my legs feel very weak.  That has pretty much come and gone since that day.  Last night I started with shooting pains in the lower part of my left leg - between the knee and the ankle - that's pretty painful and had me up most of the night.  Also, started with diarreha last Wednesday.  That's probably because I was tasting while I was cooking.

Saturday I went shopping with a girlfriend.  We had a very good time but I could only stay out a couple of hours.  Yes, I was tired.  But what really got to me was all of the noise and the smells.

Cafelovr - thanks for thinking of me - yes I do have TX #2 tomorrow.  Not looking forward to it, of course.  I'm going to remind my onc nurse that Cytoxan has to go 90 minutes NOT 30.  We'll see it that helps the headache.  I've lost about 5 lbs - not sure what they will say about that.

Best of wishes to everyone this week.

LVLinda

Good morning everyone!  Well, the steroid buzz has set in, took 2 last night and this morning I was up at 4:30 a.m. wide awake!  Just finished packing my "chemo" bag with stuff to read.  It's funny, I always take stuff to read, then I hardly read anything.  My "round 4" is at 9:15.  My husband and our friend visiting from Florida will be taking me.  Then, once I'm hooked up, they are going running around and hopefully having fun on his last day here.  Company has been great, kept my mind off things.  We will drop him off at the airport on the way to get my darned Neulasta injection.  Glad he won't see me at my worst, the next week will probably be icky.  Each round seems to get a little harder....yuck.

Well, I'm just rambeling......these steroids do that to me......but the anti-nausa meds make me sleepy, and this "roid high" won't go away for a few days, it's so weird.  Too high to sleep, but so sleepy I can't function.  LOL

Hope everyone here has a good day, I will be thinking about you!

Linda in LV

mommy2two

Alicia & LVLinda - Good luck with your tx today, my thoughts and prayers will be with you as always!

Littlebird - I'm sorry that you are in the hospital, I hope you get to feeling better soon!!

Big Soft ((((HUGS))))

~Toyah

LVLinda

mommy2two - Thank you so much! 

Littlebird - I'm also sorry your are in the hospital.....I'm keeping my fingers crossed for you, hoping you start getting better very soon!

Cafelovr - Good luck tomorrow!

Melinda41 - Thanks!  2 more rounds after this one.  I will have surgery after treatment is over, then maybe more after, so I might have a long ways to go, just depends on how this first bunch goes.  The mass feels smaller, and my left armpit isn't as swollen....can't wait to see what my next PET shows.  Wish I knew now!  Oh well, getting used to this "waiting" game!

If I missed anyone, forgive me.  I just have been out of the house most of the week.  Taking advantage of the "good" time.

Linda

JustmeAlicia

Linda ~ I too pack stuff to read during infusion.  But then I find myself so dizzy that I can't focus to read.  The hospital has tv's with earphones I usually try to watch that a bit.  I have the chemo day weeping today.  I tend to feel sorry for myself on chemo days.  Dreading the side effects to follow.  I have to turn my brain around and remember it is hopefully killing any of those darn little cancer monsters running through my body. 

Thanks Toyah for the well wishes.

I hope everyone has a good day.  

Mouse6694

ALICIA & LVLINDA Thinking of you today 3 down. Wishing you a speedy s/e recovery.

LITTLEBIRD Hoping you get to feeling better soon and get home to your warm cozy bed.

LVLinda

Alicia - Good morning!  I had the weepies last night while watching "Brothers and Sisters." I had to leave the room so company wouldn't see the tears.  I'm pretty darned tough I think, but it still gets to me.  Wow, wish we had TV's in our room - I also get blurry and dizzy.  But, you are so correct, I think about killing those cancer monsters too! 

I'll be thinking about you, we are in this together and we are winning! <G>

Mouse - Thank you!

I'll try to post again later today......off to wake everyone up and get in the shower.  Here we go again.

Linda  

BrendaSharon

LVLinda~~~~

I know you must be goad to be half way done, ya who for you!!!~~~ I do hope you post week goes smooth for you with few s/e. Drink, drink, drink, keep the tummy happy too!!~~

Alicia~~~~

To a smooth day for you as well~~~~ My thoughts and prayers are with you today for everything to go as easily as it can.  Remember my "Warrior" Kill  all them little monsters, you will be well!!!~~~~

Lilltebird, (((((WARM-Healing-HUGS)))))

Get better soon, we are with you! POSTall you like until your heart is content. We are listening to you!!!~~~~All the "Warriors" prayers are with you!!!!! I'm sooooo sorry that you have to go thru all of this. I know it is enough just dealing with the normal side effect without the extreme low blood counts. WOW down to 1 that is scary to say the least.

LVLinda

BrendaSharon - Thanks so much!  I've been drinking that water, lots of it.  I found that since I've been so active with company, playing tour guide, that a lot of water has been stored in my ankles! LOL  The swelling is down today, thankfully, but my ankles looked like flower bulbs that last few days!  Well, I'm signing off, getting in the shower and getting ready.  Hopefully I can post tonight.

Linda

BrendaSharon

CCNANI,  WHERE ARE YOU!!!!!!~~~~

has anyone heard from CCnani???? 

Back on Nov 17th this is what CCnani said,

"They cancelled my chemo for today because there was still a pinhole opening in left breast. They called in the plastic surgeon and decided to reopen the incision clean it out and re stitch it. They didn't want to take a chance on chemo with that breast not completely healed! Put my chemo off for 2 weeks!!!! "

I just don't know what is going on or how to find it if everything is OK.  She POSTED everyday, two three times.  Always in good spirits waiting, wishing others well!! Helping sisters in soo many ways.  She just had to wait on her TX to start. She didn't even want to leave us "Warriors"!!

The last thing we heard from her was on Nov. 21st.  That is over a week ago. I miss her!

She was my back up for when I was too tired or sick to post. I even PM'd her nothing!!

"Worried Warrior"

SharaD

Hello everyone, it's a new week and God only knows what great trials and tribulations we'll be hearing about in this lovely adventure they call cancer. Buckle up and keep moving forward!



Brenda....hopefully CCnani is just taking a much-needed break and some deep breaths and will be checking in soon, though it does seem worrysome not to have heard from her for 9 days. Cross our fingers!



littlebird...I'm glad you got to the hospital, and PLEASE keep us updated. Demand to see a pain specialist if you have to (Is there even any such thing as a 'pain specialist'? I think I've heard of it before, if not tell them to invent one for you!) Don't be shy about asking every doctor and nurse who enters that room to wash their hands, in fact put a sign up right by your bed "NO WASHY, NO TOUCHY!" Have them wipe down that CT scanner with alcohol, too! You are not in any shape to pick up any more germs so don't try to be kind or shy with anyone who visits you. Tell your husband to demand this as well, since at times you might be too loopy to care. I never heard of a blood count of 1, but hey, at least it is better than zero! Always look at the bright side, even when it's so dim you have to squint to see it.

Melinda41

Brenda Sharon: if you click on ccnani's profile, it says she logged in 11/25, so hopefully she is fine, just laying low for whatever reason.

CCnani: Give us a holler and let us know you are OK!

BrendaSharon

Hi Melinda,

I did see it shows a log in, BUT not like CC not to have something to say!!~~~~ I'm ever so worried for her. Why would she just look and not post to us?

I see it's two weeks since your TX, so how are you feeling? Your (AC) does it stand for Adriamycin and Cytoxan? If so you should be feeling fairly well today. I hope!!~~

Thanks and (((((Warm HUGS)))))

Melinda41

BrendaSharon: I feel fine, just chest congestion, no chemo SEs right now. Head is tingling, waiting for the fall out, head shaver is "on call", kids want to shave hearts into my stubble once I shave it. Yes, you have my AC correct. I'll do 12 weekly Taxols after 4 ACs.

kyasou

I hope I am doing this right:

11/10 , 11/24 , next AC 12/8

kyasou (AC) every 2 weeks X 4tx, then (T) every week X 12tx.

cat60

Im a November Starting Chemo Girl too ...1st on on Nov 6th and 2nd one was Nov 23rd......I am on A/C two more times , then will do Masectomy in Jan... Hard to believe its even happening , since my Mammo in Oct, found to have DCIS, at first thought Because of funky DCIS in right breast, small, would do Masectomy only at that point..While surgeon was doing check up found node near breast , did immediate biopsy and found to be positive....So that changed treatment , as you know ...I saw the oncologist a few days later, and started on the chemo Nov 6th....1st Round , I got sick that night and morning, even though Dr. said "I promise you wont"   WEll this time I didnt...The Emend helped ...so far only feeling out of sorts 1st day and 2nd...Appetite not the greatest first 4 days or so.....been working...Throat sore after a few days also....I have a wig, had my stylist cut my hair off in ponies for Hip Hat Hair, but still havent sent off yet....Im so glad to have found this discussion board...

Psalm121

LVLinda & Alicia,

Been thinking of you both today...hope all goes well in the coming days with comfort aplenty and minimal SEs! Also, notice all week is scheduled full for other Warrior Ladies---cka0706, mouse6694, doronet,lindaj, boxersue,coolbreeze,sharad,menevermind,deedee22, aronimia,redheadpam, reglau, and shelshel.......lots of wonderful warriors with lots of prayers going your way!! 

LittleBird

My heart aches for you, but I know your spirit is strong...your poetry speaks from your heart to all of us who have the utmost appreciation for you encouraging us!! 

I have just now checked in, rough day....that little "faerie" you all speak so fondly of!! Hoping the queasiness, etc...settles down and I can continue on the upside from here.  Although, now that I think about it, I'm starting to feel a little chill....guess I'll go get the Tylenol.  Take care all & good night

kyasou

A friend of mine told me about this board and I am so glad she did.  What a fabulous resource and support network you all have...and I am so happy to join you. 

 I am curious if anyone has experienced a side effect I am dealing with and if they can suggest any coping measures.  I am on AC every two weeks.  Four days after my first round, I started having very loose stools that were full of blood and extreme pain.  This continued for days.  I saw my onc. twice and a gastro-ent. but they had no solution for me other than wait it out.  It resolved two days before my second round.  I thought I was out of the woods, but then, like clock-work, it started four days after my second treatment as well.  I have been taking fiber, senna and stool softener per dr.'s orders, so I have been lucky not to have to deal with constipation and I cut back to only fiber once I am off anti-nausea meds.  I am wondering about pro-biotics - has anyone taken those during chemo to help with intestinal issues?  Has anyone else experienced this?

 Other side effects have been predictable: 6 days of nausea after treatment, flu-like feeling, mouth sores and, of course, the hair is now gone. 

 Thank you for any advice.

JustmeAlicia

Cathy and Kyasou ~ hate that you are here.  But glad to welcome you.  This group is so wonderful.  We are the WARRIORS some may be WIMPY at times we may be both.  BUT together we will get through this and kick CANCER in the butt ~  We are here for you, and everyone is a wealth of information.

I had TX #3 of AC today.  Tomorrow am I go for the dreaded Neulasta.  Other than a splitting headache I am feeling ok.  Everything went smoothly ~ no vein problems today.  YEA!!

Linda~ I hope all went well for you today.  Thinking of you and hoping your SE's stay at a minimum.

To all the ladies going tomorrow and this week.  HUGS and good thoughts coming your way from me to you.  I am there with you in spirit in that drip room !

Alicia

Sherri_V

Alicia,

I'm curious about the shot.  Do you get it as a preventative or did you have white blood cell problems?  My wbc were fine after first chemo but my cocktail was changed this time and now I have to get weekly blood draws.  I really, really want to avoid having to get the shot!  If you did have low wbc, were there any symptoms?

AND...everyone, what is up with the sore throat thing???  This is a new symptom for me this time around

SharaD

Hi kya...and welcome.   I don't think you need to cut down on the fiber, but you might consider easing up on the senna,  that stuff can be rough. You might need to switch to another laxative, something milde, or just a smaller dose of senna.   How much do you take?  And why kind of fiber are you getting?

 littlebird..........where are you tonight, how are you doing????

kyasou

Hi SharaD and JustmeAlicia!  I have been taking Benefiber a couple of times a day.  I have been taking stool softener and 2 senna once a day for the first 3 days after chemo to combat the constipating effects of all the anti-nausea drugs.  I actually didn't take as much the first time around but upped it based on the rec's of my gastro-ent.  I may switch to just one senna a day next time.  I just don't know what to do.  It is such a strange balancing act...but I don't know if anything I am doing is going to impact the outcome.