My tips for chemo...

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.MARIANNE
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Re:My tips for chemo... - Saturday, May 02, 2009 1:04 PM
I need some help. Karen very graciously sent me the Glutamine powder. I need to talk to one of you who took the powder during your chemo. I noticed that the papers said that you needed to take another supplement with it. If you know anything about it please let me know.  Thanks





Marianne, TX-age 64
Mammy,Jan2009-lump in rt.breast
Lumpectomy-Feb 17,2009
Diag.,IDC,stage2,grade3,triple ng.HER (1+)
chemo starts 4/6/09 (CYTOXAN &TAXOTERA,W/Neulasta
Rad after chemo


LuCinda
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Re:My tips for chemo... - Wednesday, May 06, 2009 2:57 PM
My lumpectomy is May14 and I start Chemo 2 weeks after that.
Thank you to everyone for all of your personal and priceless information.
I may have to read this thread many,many times.I really learned alot today.Thank you.
Hugs,
Cindy (aka) LuCinda


Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

Deb Allen
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Re:My tips for chemo... - Wednesday, May 06, 2009 4:26 PM
Marianne, I personally don't know anything about Glutamine powder.  I'm trying to "bump" you up so someone who has taken this will respond.  If nothing else, PM Karen about her experiences, maybe?

Hugs,
Deb/aka Mimi
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





.MARIANNE
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Re:My tips for chemo... - Wednesday, May 06, 2009 4:29 PM
Thanks Deb, I went back to when Karen first talked about it and found out the dosage. I also found out it is good to swish in the mouth for the soresl





Marianne, TX-age 64
Mammy,Jan2009-lump in rt.breast
Lumpectomy-Feb 17,2009
Diag.,IDC,stage2,grade3,triple ng.HER (1+)
chemo starts 4/6/09 (CYTOXAN &TAXOTERA,W/Neulasta
Rad after chemo


Deb Allen
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Re:My tips for chemo... - Wednesday, May 06, 2009 4:34 PM
LuCinda, thank your for your positive response about all our tips for chemo.  When I was "going through" everything, I bought a 3 inch binder, and began printing out helpful tips, thoughtful posts, inspirational messages, then expanded my binder to a 4", to include my oh-so-frequent lab tests, procedures, etc, but the bulk of the book contained posts I had printed from this site.  I carried this book everywhere, to every appointment, to every procedure, and it became my comfort and my strength.  I could sit waiting in a chair, and since I had the sections divided by tabs, (I know ... call me obsessive, unless you come to my house and see the mess!!!) ... I could read and immerse myself, plus I could highlight passages as questions, so I kept paper in the binder too...mostly it worked for me as a way to involve myself in my treatment, and carry my Komen angels with me.  To this date, I still have the binder, it is in a fireproof gunsafe in our house, and I treasure it as much as the Bible my grandmother gave me when I was 8 years old.

Deb/aka Mimi


Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





LuCinda
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Re:My tips for chemo... - Friday, May 08, 2009 1:33 AM
Deb,
Thank you..... I think I will do that as well.That is a great idea.
Mine might not be as neat and organized as yours.lol And my house is a wreak too! My guess is that it's going to stay a mess for awhile!
Hugs to you,
Cindy



Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

pshelton
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Re:My tips for chemo... - Friday, May 08, 2009 11:34 AM
Thank you for the tips, I got the bad news yesterday that I do have to have chemotherapy afterall.  Several reasons came in to play on this, the largest mass being 2.0 cm, the second largest mass being 1.5 cm. and 5 of the 6 masses were all primary.  Also my age was a reason.  Fortunately the chemo is not cardiotoxic as some forms are, that was one of my first questions, I didn't ask about hair loss, I already knew that answer.  My treatments will start mid June, waiting for all the incisions to heal and the drain sites (finally drains pulled yesterday) to heal up.  
I will be on Cyclophosphamide (Cytoxan) and Docetaxel (Taxotere).  4 courses with 3 weeks in between each course.  

Paula, age 46, diagnosed at age 45, er/pr+, Her2-      
2/26/09 DX IDC multifocal, solid and cribriform type, 6 masses total, largest 2.0 cm
4/15/09 Bilateral skin sparring mastectomy with TE, 3 nodes removed, clear, Grade 1, Stage IIa
5/22/09 DIEP   5/26/09 Removal of failed left flap, TE replaced
7/2/09 Left Lat Flap with silicone implant
8/10/09-11/23/09 6 rounds chemo Cytoxan/Taxotere
3/5/10 More reconstruction
6/20/11 Final big reconstruction sur

Deb Allen
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Re:My tips for chemo... - Friday, May 08, 2009 4:33 PM
Lucinda, it doesn't matter if it's organized or not...it is YOURS.  You decide what is in your journal of your journey.  Like I said, I printed posts about tips, happy posts, posts that reminded me to ask questions.  Whenever you are in any doc's office, I found it soothing and calming to just flip through different posts, kept a highlighter and some of those post it note flags...so I could center myself, and still be able to get up and go to the appointment, carrying my notebook with me. 

I have to share this, my notebook contains optimistic, encouraging, personal posts and threads and private messages and emails from sisters who have since lost their battle.  They are still with me.  And nothing can take that away. 

Do what works for you!!  And @#$@ what the rest of the world thinks.  This is your life.

Deb/akaMimi
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Deb Allen
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Re:My tips for chemo... - Friday, May 08, 2009 4:37 PM
Paula, the bad news, can sometimes be the good news.  There is a treatment, and it is tough, but you can do this.  The chemo can put you into remission and a welcome date with NED.  I think I need to surf and post a photo of what NED looks like in our world.

Deb/aka Mimi

(so sorry, for the newbies, cuz I didn't know this for at least 2 months here...NED is our "go to guy"...he represents No Evidence of Disease)

Anyone want to join on what NED should look like? 
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





cejkwj
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Re:My tips for chemo... - Friday, May 08, 2009 4:44 PM
I'd imagine NED to be tall, handsome and only have eyes for me.

KWJ
38 yo RI dx 12.1.08
Mixed IDC/ILC stage 3 Triple + (ER 60%, Her2 +++, PR+)
Taxol/Herceptin x 12 - done 3.5.09,RB Mastectomy and nodes 4.2.09 A/C April 23-June 25 2009,Herceptin done 3/24/2010 Rads 35  9/16/09,Tamox 7.09 5 years
Ibandromate study 7.09 3 years
TE placed 3/12/10 - recon TBD
Lapro hystrectomy 3/24/10 fibroids from tamox
POrt out 4/2/10
Yes, three sx in 3 weeks - worth it

.MARIANNE
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Re:My tips for chemo... - Friday, May 08, 2009 4:47 PM
Cindy, welcome aboard and sorry you have to have the chemo but you have to fight this demon that invaded your body. I decided to quit worrying about the house and my reward for chemo is a cleaning crew to get the house back to normal. I see you start your chemo in 2 weeks. The ONC I go to required 8 weeks after surgery before starting chemo. It was good for me b/c I got things in order and also got my mind on the right track to fight this. I also have a journal but not as neat as Deb's. Someone is always here, so post alot.





Marianne, TX-age 64
Mammy,Jan2009-lump in rt.breast
Lumpectomy-Feb 17,2009
Diag.,IDC,stage2,grade3,triple ng.HER (1+)
chemo starts 4/6/09 (CYTOXAN &TAXOTERA,W/Neulasta
Rad after chemo


Deb Allen
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Re:My tips for chemo... - Friday, May 08, 2009 4:54 PM
I'm loving that image!!  Building in my mind, watch out world!!

Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Robin K Thompson
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Re:My tips for chemo... - Wednesday, May 13, 2009 8:47 PM
Hi Deb, my name is Robin Thompson you have responded to some of my posts.  I am on my 3rd week of recovering from a bilateral surgery/reconstruction.  I am on my way next week to prepare for Chemo 4 rounds of Adriamycin/Cytoxan every 2 weeks and 4 rounds of Taxol/Herceptin every 3rd week.  I appreciate all you have shared on your thread it is very helpful to me and also wanted to know with these meds you have anything more to share to help me along the way.  I live alone am a single momma, my daughter should be going to stay with her dad right about the time we start the 1st round, and I have great Godly supportive friends willing to do whatever I am in need of.
God Bless
Robin T

Deb Allen
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Re:My tips for chemo... - Wednesday, May 13, 2009 9:09 PM
Robin, when I posted my "tips for chemo" I was flying blind by the seat of my pants, trying to remember what helped me, and what I felt like and what was the worst.  There is no way to cover everything, but there are a few things I learned along the way, some were simply trial by fire, some were taught by chemo nurses, and others, are in hindsight.  I would have given almost anything to have been aware of this site during my own chemo treatment.  Didn't know, wasn't informed, walked in blind.  All I knew about chemo was what our mother's mothers spoke in whispers about.  The worst of the worst.  To make it even more personal for me, I worked at a law enforcement agency, and a highly respected, much loved detective I had known for over 5 years, was diagnosed with pancreatic cancer, about 2 years before my own diagnosis.  I ended up sitting in some of the same chemo chairs as he did, and he died right before my diagnosis.  Sounds pretty dreary, but I had nurses taking care of and educating me while knowing that they took the best care of my friend. 
Now with that out the way, take books, take paper, take pens, take a friend, ask, ask, ask questions, write down everything or have your friend write down everything.  Some of the best naps will be in the chair, please get a port, not a picc line, and drink fluids, lots of fluids.  Above all, allow yourself time to rest and to just be.  Don't go alone, you will feel euphoric for a bit after the chemo, but that is in part due to the decadron, and other meds given prior to the real stuff.  Don't freak when you pee red...drink more water, that is the "red devil" coming out. 
When you hurt, yell out, don't suffer in silence, ask for and you should receive any and everything you need.  Be prepared for mouth blisters, diarrhea, constipation, aches, and just write it all down, and do what you have to do...call your docs, and scream bloody murder, there is no reason to suffer.  Seriously, I don't mean to scare you, but this is chemo, and the poison is killing the cancer.  Allow yourself to be human, curl up and sleep and cry.  But keep fighting, and it does get better.  When you feel like you can't go on,,,come back here, and someone will be here for you...hopefully I will.

Feel free to PM me, and then you can shoot me if I shared too much!!  I wish I had known then what I know now, and I'm still here.

Hugs and love to you sweet Robin...
Deb/aka Mimi


Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Pat Patterson
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Re:My tips for chemo... - Friday, May 15, 2009 8:30 PM
Robin...I had chemo before my surgery.  I got six rounds of Carboplatin, Taxotere and Herceptin, every three weeks.  I also had the Neulasta shot the day after and I can honestly say, with the exception of one or two really crappy days, it was not all that bad!  I am 57, I missed only a couple of days of work and only one day spent in bed the entire day!  Make sure you ask for the meds if you need them!  The nurses also warned me that my face would be scarlet red when I got up the next morning from the steroids and it was!  I went into work and everyone said..." OK, where did you REALLY go yesterday, to the beach?".  I got Compazine after the first round and I don't think that was much help.  Help me out here, ladies, as my chemo brain is peventing me from remembering the best pills ever for nausea.  My stomach was a mess the entire time, I will say that, so I ended up taking Donnetal which is supposed to relax your colon, on the advice of one of my nurses.  They will become your best friends!  Without them and this place with our sisters...I can't imagine!    We are here for you!
DX 5/13/08 Clearwater, FL HER2 +
IDC Stage IIIA changed 12/2/08 to IIB Grade 3
Taxotere, Carbo & Herceptin  6/11/08
Part Mas 11/5/08 SNB neg & addl node neg - CLEAN MARGINS!
Arimidex 11/25/08  35 Rads 12/15/08

Vernetta Davis
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Re:My tips for chemo... - Friday, May 15, 2009 9:28 PM
Diagnosed stage 1 breast cancer left boobie...7/31/06
 
All I can say is, THANK GOD FOR BENADRYL!!!!
I slept through all of my chemo treatments.  Woke up and had to potty like a race horse each time.
The Neulasta shot was a great help in getting me back on my feet after treatments.
I think anything that could go wrong, went wrong with me.
My first treatment landed me in the hospital for 5 days in isolation(immune system shut down).
My port didn't work after the 3rd treatment, it lodged against my ribs and couldn't be used, so I had to have my treatments in my arm.
One of the drugs caused my heart to enlarge, diagnosis (congestive heart failure)
 
Hard candy and sunflower seeds worked for me. I always wanted something sweet, but needed something salty to keep from vomiting and take away the medicine and metal taste. I had to give up the sunflower seeds after being diagnosed with the heart condition because it caused me to retain fluids.
So now I have to weigh myself daily and if I gain 4 lbs in a week which is not hard for me,I have to contact the dr. and they will put me back in the hospital to drain the fluids.
 
But several people I know, had no problems with chemo, I guess I was just the lucky one.
 
BEST OF LUCK
 
Vernetta Davis
St Louis, Mo
vernetta325@hotail.com
<message edited by Vernetta Davis on Friday, May 15, 2009 9:32 PM>

irishkath
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Re:My tips for chemo... - Saturday, May 16, 2009 8:39 AM
Hi Deb
 
I have been reading all the posts for several weeks and you are one of the writers that I have found to be so much of a help to me.
 
This whole thing has been one roller coaster.  I was diagnosed in early March the day before we started our family vacation, I went anyway didn't tell anyone except my husband (who has been fantastic) my best friend (sister) (also a survivor) and we had a great time.  We got back and within a week I was in surgery for a skin saving removal. 
 
I have signed on to a new study and am doing a 12 week LD taxol, Herceptin plan.  So far no big problems at all.  I am on my 2nd treatment and this is the day after, if it is like last week, I will be on top of the world with energy.  We will see.
 
I just wanted to thank you and all the other posters, family and friends are great, but being able to read about others who are going through the same thing is really important.
 
Please be sure I will keep everyone in my prayers, especially those looking for the cure.  Enough is enough.  No more wonderful, strong, caring women should have to suffer much less worry. 
 
Let's kick butt!
 
Kathy - St. Louis

Deb Allen
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Re:My tips for chemo... - Saturday, May 16, 2009 10:27 PM
Kathy, your post about me is more than I could ever wish for.  I am pretty much a "tell it like it is" type of person, and I don't mince words.  What I want most from me being here in Komenville is to lay bare the facts of this monster.  And along with that I've learned to laugh and make "fun" of myself, it's a part of life.  Breast cancer has ripped me inside and out, and there is no way to describe what each of us goes through.  Sharing feelings, and emotions has been my salvation.  I never had a "real" sister.  Not blood sister.  I only have a younger brother,  who has written me off as the black sheep long ago, and far away.  When I found Komenville, I settled in, and have since formed more positive, strong, true relationships with sisters and brothers than I've ever had in real life.  Most of my life has been as a "black sheep"
Komenville is about unconditional love, acceptance, understanding, and sharing. 

Ok, I went off the deep end, but hey, when I feel, I write what I feel.  Kicking butt!!


<message edited by Deb Allen on Saturday, May 16, 2009 10:30 PM>
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Stubbornwoman
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Re:My tips for chemo... - Tuesday, May 19, 2009 2:21 PM
Hello, I am post chemo and kind of wished I had seen this long ago before I did chemo.  But I tell ya I laughed something fierce when I saw the thing about the "Red Devil" and peeing red!  This is no lie!  On my first treatment day after they gave me the Red Devil I had to go to the bathroom.  I was already a panicy mess now and when I noticed that I had peed out RED, I freaked.  I thought something was wrong for sure!  But they explained it to me and all was good after that!  Also here is another good tip!  For those who have problems with tasting the chemo and the flushes and the Heprin like I did....Wriggley's makes a gum called 5.  The flavor is called "Rain".  One of my nurses showed this to me and I tell ya, it works!  Yes yes yes!  Works wonders! 

Deb Allen
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Re:My tips for chemo... - Tuesday, May 19, 2009 5:22 PM
Stubborn, you are already helping by posting what you learn.  Some things about chemo and it's
"questionable effects" simply can't be dealt with other than to laugh at.  I'm not trivializing anything.

Here is a non-cancer story I want to share, that happened about 40 years ago.  I come from an extended family with a tradition of everyone gathering at Mom & Pop's house for Christmas.  Near and far, we always came, and stayed, and laughed.  Now my Mom & Pop (my grandparents) were at the forefront of life changing events, even while they still saved bread wrappers, and washed aluminum foil, because they were children of the great depression.

That particular Christmas, Mom had just discovered this clorox thing that you could put in the toilet tank, and when you flushed, blue water would clean the bowl.  Well my uncle Ned, went to the bathroom, and I don't know if this is a guy thing or not, but evidently he was whistling at the wall while aiming in the toilet, so when he flushed, and looked down...all he saw was blue water.  He literally came out screaming for help, thinking he was dying, cuz his piss was blue!!

How far have we come, and we are still here.
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





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