Spring 2008 TCH Gals "get together"

mary6204

Spring 2008 TCH Gals "get together"

mary6204

I have met some wonderful gals in this support group.  But I'd really like to hear from the ones on Taxotere, Carboplatin and Herceptin as I am.  I kind of feel like the minority here.

I had my second treatment Tuesday 4/15 and although I'm doing a little better today, I still feel yucky.

If you've survived this "recipe", are on it currently or soon to start; I would love to hear from you.

Days 3 through 6 were the toughest on me the first time around.  This time seems to be about the same; just not as intense.  It's day 5 right now and I'm bored out of my mind.   I bounced back beautifully and felt fabulous after the first week.  Sure hope it happens again.  Love to hear from anybody.  God Bless, Mary

wendyk13

Hi Mary6204....

I had Taxotere and Carbo and Herceptin every 3 weeks, started 1/26/2007, last one 5/9/2007....went to H every 3 weeks and finished that 1/23/2008 and port out 1/30/2008.

Except for of course hair loss and that yucky metalmouth day 5 thru about day 8-9 and a little tingling in my L finger tips....I had NO side effects.  None.  And I do know that I am lucky.  My fingernails are still very weak and peely but that is a se of Herceptin.  My toenails were fine.  My hair has grown back...still short...but I've had it cut and colored and  highlighted.  My eyebrows and lashes did thin 3 times (last time was 6months AFTER chemo) but I never lost them all at one time.  My leg hair is still weird....only have to shave every month or so but hey....that's not exactly a bad thing!

If I can answer any other questions, PM me anytime!  I wish you the best on your journey, kicking some serious cancer butt!

Hugs and Smiles!!!!!

mary6204

Thank you Wendy, congratulations on being done and thanks for answering.  You are lucky about the side effects, mine aren't too bad though.  It's just that I'm so active and sitting around because I feel icky is so hard for me.  There's so much I wish I could do.  I'll survive it though.  I hate that tinny mouth taste as well.  I'm hungry, but nothing tastes right.  Thanks again, Mary

wendyk13

Hi again....did you try crystal light lemonade?  This tasted great and I know this sounds weird but the only thing that actually tasted normal to me to eat was.....a salami sandwich on rye bread.

I did buy the reduced-fat kind tho...

LisaAnn

Mary,

Looks like you and I are almost in sync. I had my second treatment of TCH on Monday the 12th. I feel yucky from day 2-5. Saturday was the first day I didn't have to use the anti-naseau drugs. The worst side effect for me is the "laying around". I am always on the move, and I get severly depressed if I can't function. Thursday was the worst. I am always hungry, but don't want to eat either. If I do eat, I can't taste much of it anyway!

I hate being tired all the time, this 2nd treatment seemed to make me more tired than the first. I also had a reaction to the carboplatin infusion, my left arm looks like I am a drug user(but in a way i am right?Hmmmm).

I had a bit of a hard time with the hair loss, I am holding on to what I have left. I have a great wig and get compliments on it everyday.

I have noticed that my skin has cleared up quite a bit. I used to have adult acne(not much) but my skin is quite smooth and healthy looking. If only the bags under the eyes would follow suit! Thank goodness for concealer.

I have been quite pleased with this regimen.

mary6204

Thanks LisaAnn, It's so nice to hear from gals on the same regimen.  I'm doing okay as well, althought it's day 6 for me and I did have to take a Zofran this morning; feel okay now.  I'm holding on to the hair I have left as well; just can't shave it.  It's a mess and it looks like dreadlocks, but it's nice cause when I wear my scarf I have a hairline as well as several strands sticking out that makes it look normal; well, at least for now.

It sure will be nice to get past this.  If I stay on schedule, my last treatment will be July 8th, then radiation and of course the continuation of herceptin.  What a lousy summer to look forward to!!

Good luck gals, and I hope to keep hearing from you.  I'm sure there's a lot of us out there.  Mary

vhqh

I finished 5 rounds of TCH in February 08.  After the first week I was generally OK, nausea was pretty mild and easily controlled.  Worst side effect was the fatigue, by the 5th round it was all I could do to drag myself out of bed and take a shower for the first week after chemo. 

mary6204

vhgh,  I am suffering with a lot of neasea this second treatment.  I told my husband today, I'm not sure I can keep it up.  I am curious, you say you had 5 rounds?  I've never heard of anybody having that amount.  It seems like it's always 6.  Any reason you had 5?

I was told before I started this, that it's found the women who have the most nausea during treatments are the same women who had morning sickeness.  One of the reason's I only had 2 kids was because I was sick my entire pregnancies, especially the second one. 

I bounced back so well after 8 days the first time, just not sure it's going to happen again.  Mary

Betty0515

Wendy,

Congratulation, you are out, but I will start my 1st treatment on May 15,08.  Do you recommend me anything that make my life easy on side effect? I will have the same treatment that you did. Did you work? Did you drive? I am confused so many people try to help me with different ideas.  Thank you for your help.

Betty0515

Hi Wendy,

Congratulation you are out, but I will start my 1st treatment on May 15,08. Can you please tell me how did you spend your day after chemo? Do you recommend me anything to make my side effect easy? Thank you for your help.

mary6204

Betty, are you starting TCH on May 15th?  I'm halfway done with mine.  Mary

janet11

Good luck to all of you.  I had 6 cycles of TCH ending January 2007, so I'm over a year out.  The worst part of it was "sewer mouth" (*laugh*).... (well, I can laugh now) -- that disgusting taste that would hit me about days 5-10 of each cycle.  Biotene mouthwash was my friend. I'd go through a bottle of it each cycle.

It took about a month after the end of the last cycle to get where the reflux no longer hit me and when things started tasting good again.  By my last cycle, I was actually dreaming of my favorite foods which were tasting pretty bad .... dreaming of how GOOD they would taste... someday (*laugh*).  My husband got a chuckle out of learning why I was drooling in my sleep.

To good luck to all of you!  You can DO it! 

Betty0515

Mary,

I will star my TCH on May 15, and  I have my best friend daughter wedding on Saturday the 17. Did you work during the treatment? Sorry I am very active person and organized that I am planning my life during the treatment. I am thinking that I will have a lot of surprise!!!

Betty0515

Girls,

I love to read and write and  I hope that you don't mind to read my email. I had my port last friday and tomorrow 5/09 I will take my bandaid out. I am get ready for the big day my 1st chemo next Thursday. Thank you for you help.

mary6204

Janet, Glad to hear you finished over a year ago.  Yea for you!!!  I'm looking forward to that day and thanks for the pep talk.  Yes, "sewer mouth is yucky"  I'm tasting it right now and it's worse with dairy.  No ice cream, cottage cheese etc for me right now.

Betty, I'd love to keep in touch with you.  If your side effects are like mine, it won't hit you until the 3rd or 4th day so you might just be able to enjoy that wedding.  I don't work outside my home, but I do paperwork for 2 companies, my 90 yrs old Dad lives with me and hubby and I babysit 2 days a week for my 3 grandkids.  My bad days are day 4 through 7 or even 8.  I'm hoping the treatment I had tuesday (#3) will be easier.  I try to only babysit one day treatment week and my husband who's partially retired does help.  I usually have 2 full weeks of feeling good and going to the gym. 

If you have any questions, just private message me.  I don't always see other posts from people, but I'll try to check.  It's not fun and I had 2 days the first treatment and 1 day the second that I swore I was going to quit, but you get over it and move on.  We're all in this together.  Good luck and God Bless. Mary

Betty0515

Mary,

Yours hands is full Mary.  You don't need outside job. I did not retired yet and I don't have grandchildren.  Since I had mastectomy I start to loose my hair. I hope I have some hair left for the Wedding!!!!

Happy Mothers Day

mary6204

Just wondering if there's any new TCH gals out there.  Mary

KristyAnn

I just finished my second treatment of TCH (out of 6) on 5/15/2008 - I am very tired and have achy legs from the Neulasta. I ended up in the hospital after tx #1 due to low neutrophils. I dont have a metal taste - I call it "slime" mouth- everything feels slimy and no appetite but have to eat something small every 3-4 hours.

Kristy

mary6204

Hi Kristyanne, I had my 3rd out of 6 tx's 2 weeks ago.  I'll be so glad when it's over.  I have horrible nausea which starts the 5th day and goes through til day 8 or 9.  I had trouble with elevated liver enzymes after #2 and after #3 I have to have an IV for dehydration as well as depleted potassium and I found out today that if my hemoglobin goes any lower I'll have to have shots to raise it.  Oh boy, thanks chemo.  Sounds like we have opposite s/e.  I have to admit I'm not tired and I wish my appetite wasn't so good.  I seem to eat all the time.  Good luck with the rest of your treatments.  Mary

KristyAnn

Hi Mary,

When I landed in the hospital after tx #1 I had depleted potassium also- I was on IV potassium for 3 days to get it back up- I never really knew what lowered it as I had diarrhea after chemo (well starting at the time of biopsy actually). I had to have procrit in the hospital to raise my hemoglobin after round - I made a HUGE crock pot of beef/vegetable stew today- lots of tomoatoes etc to try to help my hemoglobin and potassium through dietary means. Luckily no nausea so far.

Kristy 

Zanadew

Hello everyone,

Guess I could be the poster child for s/e on TCH.  I only had TCH for 2 treatments and they took away the Carbo because my plts & WBC were zero. Treatment 3 was Tax & Herceptin and I am so edematous they've taken the Taxotere away.  Today was treatment #4 and it's just Herceptin.  He wants to schedule my surgery now. I had my 2nd PET scan and it showed NOTHING!  woo Hoo!!!  I have also developed bad lymphedema in my Right arm and that's before surgery - anyone else had that problem?  I am so edematous everywhere I feel (and look) like the Pillsbury dough boy. I have had 10 lb weight gain every visit.   I am wearing an arm and hand sleeve but they dont really help.  Will be getting PT to teach me some excercises but they havent been very helpful either.   My 1st TCH treatment was horrible, I had severe side effects with about everything immaginable. Since they have decreased doses and taken away chemo's I have felt better except for the swelling, muscle and joint pain.    My doctor told me today I will stay on the Herceptin forever or I become immune to it - whichever comes first.  I was a little disappointed since it was going to be a 1 yr treatment.  I am just thankful these dreaded drugs were available for me and that they have kicked my cancer so quickly (at least for now).   Best wishes everyone.

Vicki

Betty0515

I hope that you are able to eat everything in 3 days HA,HA. One of my friends from Cancer/S told me don't eat anything more than 3 days old.Since that I have been divide in small portion and freeze.DO you like beet? It is as good as tomatos. I have add to my diet too.

Betty0515

Vicky

I will have my 1st chemo on June16. I am try to read about everybody s/e to help me. I will have 3"girls" for 6 month and Mr.H. for additional 6 months. Can you please tell me about you 1st chemo and s/e?  You have beautiful hair. Are you loose it? Thank you for your help.

Betty0515

Vicky

I will have my 1st chemo on June16. I am try to read about everybody s/e to help me. I will have 3"girls" for 6 month and Mr.H. for additional 6 months. Can you please tell me about you 1st chemo and s/e?  You have beautiful hair. Are you loose it? Thank you for your help.

Zanadew

Betty,

Thank you, but yes I lost it after my 1st round of chemo.  I bought great wigs, but honestly I hate wearing them.  I wear caps or scarfs most of the time.  The 1st chemo treatment s/e were vicious for me, but I started out dehydrated I think.  So start drinking lots of water the day before.  I was ok, until the night of day 3.  I had horrible nightmares, and felt overall YUK.  Day 4 after chemo I had n/v, couldnt get out of bed - was soooooooooooo tired. Slept the next 2 days.  I had all the n/v meds they just didnt work well that time.  On day 6 I had diarrhea and bad stomach pains.  Still very weak and tired.  I really didn't feel better until about day 8, that's when I went back to work.   I think I may be the exception I got really toxic on the chemo really fast and was unable to finish my 6 treatments.  They lowered my doses, but really didn't help.  I developed severe edema and gain 10 lbs each tx.  I'm going in to see my surgeon tomorrow and will find out whether I'm getting lumpectomy or mastectomy.  Since they are not trying to get a cure for me, the lumpectomy hopefully will work.  I also developed lymphedema in my R arm and have been wearing the sleeve & glove for several weeks.  So the less they have to do with those axilla nodes the better for me.     Like at said before, I have experience about all the s/e at one time or another.  Most folks have had less trouble with the drugs.  I wish you the best, hang in there  and DRINK your water!   Good luck with your 1st one girl!

Vicki

mary6204

I just seen all the recent posts.  Kristyann sounds like you and I have a lot in common.  I'm taking the potassium tables 2 times a day. The tablets are so big I have to break them in half to keep from chocking.

Vicki, I'm sorry your s/e are so severe.  I hope things get better for you, especially the swelling, but it is great news about your scan, congrats for that.  I too had the tired problem after tx #1.  I could not wake up for get out of bed for 2 days, they figured it was the abrupt stop of steriods, so now I taper off them and it helps.

I take advantage of week 3 by eating light and going to the gym and thankfully I haven't put on a single pound since the beginning.  Of course with me I have some weight to lose anyhow.  I find water tastes tinny to me but I know I need to drink a lot anyways so I drink propel, I love the special K lemon protien water and I add either crystal light or true lemon to the water which helps.  I've also learned (since it's happened all three tx's) to take 2 Immodium pills the second the diarrhea starts, or I'll end up needing another IV and the dizziness I got wasn't worth the 5 pounds I lost in 3 days.  It all came back anyhow.

I will be so glad when this is over with, but I do appreciate feeling almost competely normal for the past 10 days.  Number 4 is tomorrow and after the s/e I'll be 2/3 of the way through.  I have 2 new prescription to try for this one so maybe the nausea won't be so bad.  I can dream anyhow.  Good luck all, may your s/e be minimal. Mary

My hair started coming out the day before my second treatment.  I finally shaved the majority of what was left 2 weeks after the second treatment, should have done it earlier.  I find my wig far more comfortable and cooler than scarves, except for the sheer one I have.  I put on my mono wig within an hour after I get up and I take it off when I go to bed.  Guess I'm lucky with that.

Betty0515

Vicki,

Hope you had wonderful Memorial Day and thank you so much for your comments. Your comments clarify a lot of my questions and get me ready for the June 16. I decided to do my mastectomy to avoid chemo. My biopsy in my lymp node was made during my operation. Since that my l/node has been giving me problem. Vicki if you have question about your operation let me know.Why did get 10 pounds?  Did you swellow because of the medicine?Do you feel like eat? My friend said for me to have a lot of jello.Do you think can help you?

Mary I wish good luck tomorrow in your next treatment. Let me know how do you feel.

mary6204

I'm doing the happy dance today.  I got to have my treatment (who's think I'd be begging for them)  My blood work came back good, no elevated liver enzymes, potassium back to normal and hemoglobin went back up.  I am so relieved and the nausea won't be here til Sunday ( as always day 5)  so I have a few more days to get things done.  Also my doctor is so wonderful about how sick I get he has me scheduled for an IV on Saturday and another one next week hoping it will get ahead the problem.  Sure hope it works, otherwise I'm 2/3 of the way through, Yippee.  Hope everyone else gets good news and few side effects.  Mary

Catz

Hi Mary,

I am new. Should be having my 3rd treatment tomorrow.

Started having problems early on with neuropathy - major tingling in face, hands and new this time - feet.

The past wk it has improved a great deal. The onco said we may have to push treatment back a wk and/or cut the taxotere by 20%. Do not want to push treatment back for sure!

Has anyone you know had problems with this?

Will probably be up most of the night due to the fact you could scrape me off the ceiling from the steroids.

Really enjoy going thru the forums and reading the remarks from nice people like you!



Dx 1/07, IDC, 7mm, Stage 1, 0/9 nodes, ER-PR-, HER+, Right Mastectomy and immediate

reconstruction

Catz

Hi Mary,

I am new. Should be having my 3rd treatment tomorrow.

Started having problems early on with neuropathy - major tingling in face, hands and new this time - feet.

The past wk it has improved a great deal. The onco said we may have to push treatment back a wk and/or cut the taxotere by 20%. Do not want to push treatment back for sure!

Has anyone you know had problems with this?

Will probably be up most of the night due to the fact you could scrape me off the ceiling from the steroids.

Really enjoy going thru the forums and reading the remarks from nice people like you!



Dx 1/07, IDC, 7mm, Stage 1, 0/9 nodes, ER-PR-, HER+, Right Mastectomy and immediate

reconstruction