Starting Chemo October 2009

azdiva

We are definitely a prolific group!  I hadn't read since yesterday morning, and there were 18 posts!  And the funny thing is, you guys are having the same issues as me!

Fatigue is running me.  I seemed to have breezed through the first 3 treatments, and this number 4 started kicking my butt!  I am not looking forward to 5.  OK, I am but I'm not.  You know what I mean.

I have my first tongue sore - caused by my popsicles!!  Aside from the taste bud thing, I hadn't had any mouth issues.  Completely forgot about the Biotene, etc.  Well, I won't forget that again.  It hurts!

I've said before that Neulasta gives me wonder WBCs.  Upwards of 40,000 the first week, and down to about 9000 the day of chemo.  But my red blood cells have been low.  Haven't given it a lot of thought until I was reading your posts!  I was mildly anemic years ago and just figured this was it again.  And I DO crave red meat (well, I crave almost any food)!  

I am afraid to say it, but my hot flashes slowed a little last night!  Someone told me on another thread to try keeping my hands and feet outside of the covers.  Did it and took it one step further . . . I slept without pants!!  I feel sorry for any peeping Tom because it must have looked like Mama and Baby Beluga whales sleeping in my bed (Mr. Fabio is a French Bulldog).  I think I only woke up 3 or 4 times.  A vast difference and I will do it again tonight!!

I've gained 16 pounds - at least.  Not stepping on the scale.  I keep saying my mantra (No food tastes as good as skinny).  Doesn't work.  Yesterday morning I had Penne with Vodka creme sauce for breakfast and a donut.  Lunch was something with cheese.  Afterschool was leftover donut.  Dinner was diet food!  Followed by half pint of Butter Pecan ice cream.  And somewhere in there was a wine tasting (just a little, but it was Dominus!!). Right now I am eyeing a leftover donut for my appetizer breakfast. 

And these things DO NOT TASTE GOOD!  I can't taste!   I HATE YOU DECADRON!  YOU ARE RUINING MY LIFE!!

HA!  I will stop ranting now.  Donut is calling  . . .

Love

Laura 

azdiva

Oh, and I am on Taxotere. 

Laura 

one-L

miclele, I get the decadron just like you said, day before, day of and day after.  I take 8mg twice a day.  It doesn't seem to bother me too much.  I have some trouble sleeping, but not much.  They ask each time if I have taken it and I have always taken it, but if I forgot, then they would give it to me in the IV. 

Suz, if you need some belly fat, I will be glad to donate some to you.  I have plenty to share.

enjoyful, sorry can't answer your question.  When my Onc talked to me about my 5 year regiment, it was Arimidex.  She hasn't mentioned anything since.

shelby, sorry you are having trouble  sleeping.  I am sure that is not helping with your fatigue issues.  Hope you have a good day.

Hugs to everyone  that has had a tx this week.  Hope you have a restful weekend.

Juannelle

micheleboots

I was taking the Decadron on chemo day as well as the two day after.  Now it is day before, day of and day after.  I was just wondering..

Laura, I am sure that the few extra pounds only make you more beautiful...just think, now there is more of you to love.

Suz, I am sending you my extra tummy fat as an early xmas gift...

txstardust

I'm premenopausal, so it's Tamoxifen for me.  My mother took Tamox and she was post-menopausal.  

Good luck with treatment today, Michele, and anyone else going to tx...

Have a great, s/e free day everyone! 

Scoobydoo

I take decadron the evening and morning before tx.  I am on taxol.  I crave red meat all the time.  Come to find out I am slightly anemic so maybe it is my body saying I need iron.  I am still suffering from diarrhea and have been since I started chemo.  I am tired of taking immodium AD and look forward to normal times.  I have neuropathy in my fingers, toes and heels.  I am going to ask my onc if my last tx can be a reduced amount of taxol.  I want to still be able to walk after chemo is finished.  My onc suggested neurotin to relieve some of the neuropathy and when I looked at the SEs from this I became very scared of this drug.  One of the SEs is suicide.  Can you believe that? 

I am wishing all of you ladies a wonderful weekend that is SE free.   For those ladies going to tx today and tomorrow you are in my thoughts and prayers. 

Anita 

suz45

Anita.

I take gabapentin for neuropathy, its also supposed to help with hot flashes.

Today is the first day since tx that I feel almost normal besides a headache.... what a relief! Hope everyone has a wonderful day.

Hugs Sue

arby

Thank you for the honest posts since Thanksgiving.  It seems the deeper we get into our chemo regimen, the worse some things look and feel.  I've been absent dealing with radiation recall and cellulitis.  I'm on my 2nd antibiotic and had chemo# 5 postponed this week.  I too cry alo, and easily.  I am depressed and grumpy.  this is not a nice place to be with pain and isolation.  SO we must take comfort in the normal reactions we're having, posted here midway.  And then draw on others for strength.  My worst thing is getting upset with my husband.  But he was going to put the guilt trip on one of our kids to make it home for Christmas on the 27th.  I cried and yelled..."this isn't my LAST CHristmas!"  Any of you having melt downs like that so near to the heart and mortality?  My onc is being very careful and cautious with me so I feel secure as he doses out info and meds and options.  who knows, I may not even finish the chemo and just stay on the herceptin, the most important drug in my arsenal.  Going outside helps with depression and so does outrageous forwards!  I am short of breath so can't ski or snowshoe.  Gotta look at what we each CAN DO not at what we can't enjoy this season.   I am praying for all of you to be given the grace to handle the depression and some spontaneous joyful moments in each day.  Petting my cat and dog also cheers me.  Thanks again for listening and for being much more faithful at writing than I am.  arby

valeriekd

Hi guys

Read alot of posts and can't remember whose issues is who's but I have some experience to share

the gabapentin (neurontin-same med) is given in low doses and probably has been one of the most helpful meds for the neuropathy in my legs and nerve pain at surgery site - I highly recommend it and the suicidality issue is one they have to post but I am a psych soc worker for over 30 years and have seen noone suicidal on neurontin w/ lots of good results. Of course - its up to you whether the benefits outweigh the risks - they definitely do for me.

For anemia - lots of food have iron and help w/ regularity also - apricots, nuts, legumes, eggs, fish-your iron levels being low is due to chemo and will come back up. I took iron pills which messed w/ my stomach and they said just eat well and screw the pills.

Also- onc said that leucozepin (stuff helps w/ menopausal sxs but check w/ your md first) was ok to try and it sounds pretty promising.

Mary Hope you r doing better and I get happy face #4 today!!!!!! YAY!

We r going to make it you guys! Good luck and love to you all!!!!!!!!!!!!!!!!!!!!

Valerie 

Enjoyful

Dear arby -

We have a tough road to travel.  Depression, anger, irritability - all completely understandable given your diagnosis and treatment.  We're all here for you so come and chat whenever you can.

Maybe talking with your onc about your issues would help.  There's a whole arsenal of drugs out there that might help you feel better.  I was having bad depression and homicidal tendencies - turns out my steroid dosage was too high.  The doc tweaked the dosage and I'm much better.  Like you though, I won't be back to "normal" until we get past this awful chemo thing.

I hope you enjoy some peaceful moments outside. 

E

one-L

Good evening wonderful ladies



I went to Onc today and WBC and RBC are within normal ranges, thank goodness.  However, I have been having trouble breathing and just can't seem to catch my breath. She asked me if I had gained any weight this week and of course I had gained 10 lbs. So now I am holding water so she put me on Lasix.



I am certainly glad that I only have one tx left. I am not sure my body would hold up to much more. Oh, I guess it would, but each tx is just causing more and more problems. I know they are all temporary, but I am ready to move on to something else.



I did go shoping today and really just walked around the mall. It was good to get out and just do some walking, I am feeling much better tonight, so I think it helped. I wish I lived where there was a big mall so that I could; walk there each day, when the weather is bad.



Hope everyone has a good evening.



Juannelle

Scoobydoo

Valerie thanks so much for that information. I feel much better asking to be put on neurontin.  Does it help reverse any neuropathy that has already occurred or does it only help stop it from getting worse?

Well ladies I have picked up some kind of bug.  Funny feeling in throat.  Ugh.  Not one more thing!  So now I am feeling sick from something other than chemo.  Yay for me....NOT.  We are bracing for a big snowstorm that will hit us tonight and will stay with us all tomorrow.  There goes any Christmas shopping.  Not that I was going anywhere anyway with how bad I feel.

1L-  I am so glad to hear your WBC counts are back in the normal range and that you were able to get out and enjoy the mall.  That really is awesome.  I am back on house arrest because of this cold and my low WBC counts.  I am with you...I dont know if my body could take more than one more tx.  We are both looking forward to our last tx. 

Anita

micheleboots

I am off to #4, wish me luck.

RaiderDee

Good luck Michelle.  Let us know how it goes.  I've got one more AC (on Christmas Eve, oh joy!) then it's on to Taxotere in January. I hope it really is easier than AC and that you do really well with it.  Hang tough, you're getting to the end of this even if it feels like it's taking forever.

Dee 

txstardust

GOOD LUCK MICHELE!  

Scooby, you might want to check with the doc about that sore throat.  He may want to start you on some antibiotics or something.  That's how my long hospital stay started, with a sore throat.  Take care of yourself!

1L, glad you were able to get some walking in, even if you didn't get much shopping done!  That's what online shopping is for anyway, right?  LOL.  Glad it helped you feel a little better, and good luck with resolving the fluid retention.  

Arby, I'm sorry you're having such a difficult time.  This is not easy to deal with, we understand you!  

Suz, so glad you are feeling better!

Today is the worst day of fatigue I have ever had.  I'm practically falling asleep writing this!  I went to my mother's house, ready to do some Christmas cookie baking.  I only made it for 3 hours (not too long when you're baking and can sit down for 10 min here and there) and I completely pooped out.  NO energy left.  I almost fell asleep driving in the car back to my house!  Told the DH that if he wanted dinner, he would have to cook it.  He said not to worry about it, so that's one thing off my mind.  I hope I'm not this drained tomorrow!  I can't take this kind of fatigue.  How do you all go to work, those of you with outside jobs?  I can't even imagine it!  More power to you!

Peace to all..... 

Sido

Even though I hit the finish line first, I've been hurting something awful the past few days and today I just had a meltdown.  I guess the depression just got me.  I called to check on my wig from "Hip Hats With Hair" because I kept hoping it would arrive before my sister comes on Sunday and bursts into tears when she sees me.  I'm also so tired of looking like this that I just wanted to have the option of looking somewhat normal.  Well, she had lost or blown off the order and they never made my wig.  I just started sobbing and couldn't stop, and though they offered to do another one I just told them to forget it and kept crying.  After that I just sat and kept saying "I don't want to do this anymore..." as if I had a choice. I am tired of being sick and ugly and tired.

Good luck with #4 Michelle!

 DH will be home soon with chili dogs.  I hope that makes me feel better. 

Be well, Sido

Hollycan

Laura, I am on TC too and have my 4th tx on the 23rd.  Definitely felt worse after #3 so it sounds like #4 is not going to be much fun.  Regarding the mouth sores, I have been fortunate not to have any so far and want it to stay that way for the next 3 tx's, you mentioned something about Biotene - what is it and if I use it will it help prevent me from getting mouth sores?  I'll take any advice I can get.  :-)

Sido, so sorry to hear about your wig.  I'd have started bawling too.  That really stinks.  As far as feeling sick and tired and ugly, I feel that way too sometimes, I think we all probably do at times. I just try to keep positive and I repeat a quote to myself that I like:  "Do not anticipate trouble or worry about what may never happen, stay in the sunlight."  It was written by Benjamin Franklin.  I also like what one of you wrote on this board ages ago: "The solution to the pollution is dilution", so I am drinking tons of water to help flush out all the chemicals from the chemo and medications, etc. 

Happy "Hollydays" to all!

Holly 

P.S. I think I'm gonna go out and get me a Chili Dog!  Sounds delish! 

micheleboots

Sido, i am sending you giant sized hugs...

I had a day like that yesterday.  I went grocery shopping and I started to overheat..I was forced to take off my hat and go topless.  I had on my big down parka,and a hat and scarf...it was bloody cold here.  so I get my groceries and the guy bagged them...when I got home I am missing a bag...so I unload and put away the freezer and fridge stuff...bundle up again, and go back only to find out that the man behind me took my groceries...so they give me a bag and tell me to figure out what was in the bag...how the hell should I know..I didn't bag it. so I did figure that it was the stuff on the end of my list.. so I am getting what I think was in the bag. when an employ come and tells me the man has returned my bag....ah.  I guess he felt sorry for the overheating bald chick...pays to be bald I guess.

So I am back from chemo #4... doing well.  Mary thanks for my

valeriekd

Hi Guys - finished #4 yesterday and had acupuncture during the tx and feel a little less fatigued today    BUT she did offer fatigue, depression, pain tx also- accupuncture has worked for me before and it may be an option for you eternally beautiful women also- We are only getting stronger by being able to figure out the strenght to use to get thru this thing.

Much love, valerie 

valeriekd

MARY Thanks for my smiley! How r u doing? Valerie

unklezwifeonty

Those starting rads in January, please join me on:
http://community.breastcancer.org/forum/70/topic/745061?page=2#idx_51

micheleboots

I will start rads in feb/march, I think.

MaryNY

Onty: wish I could join your January rads list but it looks like my end date is being pushed further and further out. Onc is revising my four Tx of CMF (which would be eight weeks more) to six or eight treatments (that could be up to four months). This thing just seems never-ending.

Valerie: acupuncture sound nice. I'd like to try that.

Michele: congrats on getting another Tx behind you. You too, Valerie

Hollycan: Biotene is available as both a mouthwash and a toothpaste. You can find Biotene in most supermarkets, CVS, Target. Personally I hate the taste of the mouthwash and prefer to use a teatree mouthwash. The toothpaste doesn't taste as bad but I've gone back to using regulart toothpaste. I was very careful about oral hygiene after the first treatment but then became more lax and had mouth sores for the first time this week after my fourth treatment. 

Sido: sorry you are feeling so bad. That is really disappointing about the wig. I know I would feel the same as you. You would think that an occasional meltdown would be kind of cathartic but I find it's not that way for me as I keep dwelling on the circumstances of the meltdown for hours or even days afterward. I'm guessing that your sister has not seen you since you lost your hair. But I'm sure she's strong enough to handle it and you'll really enjoy her visit.

Shelby: I found that the fatigue really hit me for the first time after Tx #4 of AC. Since you are on TAC, I'm guessing that is a much more difficult regimen and then you had the wedding last week, so it's no wonder you are tired. Please try to take it easy. I'm sure everyone will understand.

unklezwifeonty

Mary,

That's ok. You are with me in my heart anyway. When do you finish chemo now?

MaryNY

Onty: I've finished my 4 x AC. On Monday I start CMF. Original plan was to have 4 x CMF which would mean I would finish in Feb, but now onc suggests that I have 6 or 8 treatments instead. When I asked how she would decide what was best, she said they really don't know what works and added "I'm making this up as I go along." 

unklezwifeonty

Well I only hope it works. I'm sure he is doing all he believes to be good for your longer term health.

txstardust

Wow, Mary, I would be a little worried if my doc said she was making it up as she went along.  I mean, shouldn't there be some scientific reasoning behind the number of tx that she is recommending?  It's your life she's messing with!  Sorry, but that just got under my collar...I'm a little touchy today.

Well, I slept pretty much all day yesterday, and all night last night, so I'm finally awake at 6 a.m.  You'd think I was rested,right?  WRONG.  I could very easily go back to sleep right now.  This is really getting to me.  My daughter had her first babysitting job in our new neighborhood last night and I have no idea how it went because I wasn't awake when she left or came home!  My DH was here, and I think I was awake about 20 minutes of the time after he got home from work.  I feel like I'm down a deep hole and can barely see the pinprick of light that is energy above me.  Ugh.  

Sido, what BS from the hair hat lady!  I can't believe she would not have your hat done by now!  She should understand what a big deal all of this is, how important it is to us to look good when we feel so bad.  I'm SO sorry you had to go through that, and I send you healing vibes for your heart and mind as well as your body.

Val, I'm definitely considering the acupuncture.  If it can help fatigue, I'm all for it!

Michele, that guy at the store restores my faith in humanity!  And congrats on getting through tx #4, woohoo!

OK, I'm going back to sleep now.  Love to all...

Enjoyful

Mary - my onc prescribed 6 treatments of TC even though he said they're not really sure whether 6 is better than 4.  Turns out that oncs use 6 because it's the maximum that can be tolerated by most people and of course, more is better, right?  There's so much they DON'T know that I'm oddly relieved when a doctor admits it to me.  Nothing worse than an arrogant, aren't-you-silly doctor who acts like they have all the answers.  (Yes, former doctor, I'm talking to YOU!)  Having said all that, I wouldn't like the "making it up as I go along" thing either.  There must be some basis for her decisions, unless your case is so unusual that it requires some creativity?

Sido - The hair hat lady....GRRRRRRRRRRRRRR.  What carelessness!  No wonder you broke down!  I hope the chili dogs helped? 

Hollycan - I had mouth sores after my first treatment, but them someone on the boards recommended sucking on ice chips during treatment.  For treatment #2, I started using the ice chips about 15 minutes before I get taxotere and cytoxan and continued for 15 minutes afterward.  I haven't gotten any mouth sores since. 

I had treatment #4 on December 10 and ended up in my onc's office yesterday with a severe case of the whines and the make-it-stops (fatigue, body aches, nosebleeds, sore throat, heart racing after walking to the bathroom, the usual).  It's like you said, Sido, sick and tired of being sick and tired.  Anyway, he put me on IV decadron, anti-nausea, pepcid, and fluids (magnesium and potassium) and I felt much much better. Still feeling okay today so I guess he did something right!  Maybe I should just schedule this supplemental IV session after treatments 5 & 6.

Hope everyone enjoys their weekend.  We're having a BLIZZARD here on the east coast!!

E 

suz45

Happy (hopefully se free) Saturday Gals,

Yea it seems like we are all dealing with the same issues... fatigue, meltdowns, sickness and just plain old sick of looking sick!!

Arby, I also miss my winter skiing in the mountains and power walking at home. Living in Vancouner we have 3 ski mountains right in town and whistler can be a day trip. Lol right now I can barely walk up and down the stairs a few times on my bad days. I haven't skied since first DX in 07. BUT I WILL when I finally get to put this all behind me... So WILL YOU :-) we just need to do what are bodies allow while we battle this darn disease.

Valerie, Never heard of leucozepin.. Is it a prescription, I went into chemopause Dec 07 and stayed there. Things were finally getting back to normal in the sex dept and now I find again major loss of interest and its very painful again. Guess i gotta work on that ;-)

Juannelle, Im glad you got to enjoy the mall. I have avoided it so far as we do have big malls close but Ive had no energy or even interest in going shopping in them so far. Too many people and germs. But I think I might go next week after I have a tree. Need to get out of this ho hum funk and a mall at Christmas can do that.

Anita, Keep a real close eye on your temperature!! Straight to Emerg if it gets over 100 OK... I hope it turns out to be just a minor sore throat and your feeling better really soon. Sending cyber homemade chicken soup your way. {{hugs}}

Michelle, Ya on # 4, You can do it!!

Dee, When I had AC then T, quite frankly the AC was horrible & the Paclitaxol was so much easier than it. I still had se's but nothing like AC, seem to recall fatigue and headaches being up there with it and had one mouth sore which I nipped in the bud. Hope you just breeze through it as quick as can be.

Holly, Yea I'm really sick of felling ugly... also fat, bald and round faced too. I hate the fact that I look sick,  and yaaa I get to go for my drivers license pic before my b day (Jan 4) my last chemo is Dec 30... so Im sure Ill look great.. LOL.. What can you do but laugh at it. I went for my passport photo with about 1-2 inches of hair in sept last year. I survived it and didn't resort to a wig. Heh heh think I will need the wig and all of that LGFB makeup this time. We are all beautiful, just not in the way we are used to seeing ourselves.

So yesterday I tried to instill a lil ho ho ho as I have been in the major glum for so long. Drug my Christmas ornaments out the attic... just my favorites for the tree and mantle. I normally go crazy but i don't even have a string of lights up inside or out. Outsides not happening!!!!! But... Im going to my favorite tree place.. they have a million lights up, a bonfire with hot dogs there that you can sit around and roast (no charge) lots of Christmas carols playing and so on (also hot apple cider) I'm a picky tree person. It HAS to be the perfect for me Noble Pine. I love this place and these tree's so I'm actually excited about it. I make an event of it and spend hours there...

I also went for a walk with dh last night down a street in town that has a light competition. Its about 1 mile long??  and is just the most incredible site as you walk it.. mostly small older houses really close together all decorated up (some more than others) there was a group of 20 carolers going from house to house as well as many people out walking and enjoying it. Now i think that brought out the first HO in me.. lol I better find the other two or I'll just be sleazy. So there is hope.

On the serious side on the way home I was having pains in my chest off and on all the way home :-P they stopped after I changed into loose jammies and curled up in my favorite chair. But definitely something to monitor and talk to the onc about. I did have a MUGA scan done right before treatment and all was fine. So I wont worry about about it too much. Just really out of shape. Oh and I'm not sure if Im end of Jan or Feb rads yet.

Hope everyone has a safe and warm Saturday and enjoys whatever it is you need or want to do.

Love and Hugs, Suz

(sorry for anyone I missed)

micheleboots

Shelby, I could send you some of my roids to keep you awake...just think you will get your energy back soon. Just take it easy, your body is telling you to as well.

Suz, I would stay away from the skiing..I know a lady who was getting chemo and broke her leg skiing...not fun.  stick to those long walks.  I t sounds like you had a beautiful time looking at xmas lights.  I am not in the mood to do that this year. 

hope all have a great SE free day.