My tips for chemo...

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Deb Allen
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My tips for chemo... - Friday, February 20, 2009 6:07 PM
I originally emailed this just 20 minutes ago to a Komen sister who is beginning chemo on Monday.  As I wrote, I began remembering everything that I experienced, and some things that helped me.  Everyone reacts differently to chemo, and as unique individuals, with varying diagnoses, there are a few basic things that I found helpful.  To that order, here goes...

 I tried to limit myself to "top ten chemo tips", but as I wrote them down, I kept coming with another, and then my husband read what I had and added more.  So I've combined some and expanded on others.  No matter, here is what I know from my experience of very aggressive chemotherapy, six years ago.  Remember, medicine and research has advanced to the point that some of what I relate is outdated and replaced, but I tried to list the basics, which we all go through...

 
Here they are, in no certain order (chemo brain!!!):
 
Always, especially before and after a treatment, hydrate yourself.  The more water you drink, the faster the toxins flush out of your system, the drugs target the cancer cells, and if you keep on drinking water, and/or ice chips, you not only feel better, but your veins will be strong, and the poison...well let's just say I used to say "piss on cancer".
 
When your mouth is dry and nothing tastes good, keep plenty of hard candy on hand, like lemon drops, or jolly ranchers, or something similar.  Sometimes, the water builds up and yet your mouth will be dry.  Put together a "goody bag" of water, candy, and some of the other things I'm going to share.  Keep the goody bag with you at all times.
 
Most chemo centers have free internet access (some you have to ask for the code), and they should all by now have televisions with DVD players, and some movies on hand.  It's great to bring your laptop, if that relaxes you, or fav movies you love to watch, or just bring books.  Remember THIS IS YOUR TIME, IT IS ABOUT YOU, so you get to do what feels good for you.
 
It helps immensely to take your significant other, or a very good friend with you for a couple of reasons...first to drive you there and back so if you need anti anxiety meds, you can take them, and your "person" (think Grey's Anatomy) is your second set of ears.  If you haven't already been through the teaching portion of chemo, there should be an oncology nurse to explain things to you, as in meds, possible side effects, etc.  However, make sure your person understands that their role is not to be chatty cathy, but to give silent support, take notes, and sit by your side.  If you feel like talking, you will, if not, you absolutely will get irritated by someone talking about the weather or whatever.
 
If you develop mouth sores, TELL your onc team.  There are such things as what I called my "miracle mouthwash" which was prescribed for me by my chemo onc, consisting of a special mix of different things, and I had some bad times with mouth sores.  It's just a side effect, remember, chemo is not discriminatory, any and all cells are hit with the "blast" 
 
Which reminds me, if you receive certain chemo drugs, ask if one of them is nicknamed the "Red Devil".  If so, be prepared to pee red the first time or two you go to the bathroom.  Don't freak out, it's normal.
 
Your taste buds most likely will change, some foods will have no taste, and others become a huge unchewable lump, that you might have to just spit out.  Learn to go the way of malts, shakes, ice cream, baked potatoes, scrambled eggs, whatever it takes, you need to get food in.  I didn't have any real problem with nausea (I was given meds to control nausea), and yet some stuff just didn't taste good.
 
Another very valuable thing I learned...take a journal, or a day-by-day calendar with you so that you can write what you feel, when you feel it, and what meds do what, and what day procedures were done.  This serves several purposes...It keeps you focused on you and your health, it serves as a reminder when you go for numerous appointments and treatments, and it will be invaluable to you later on down the line when your brain is trying to understand the things you went through.  Believe me, I STILL refer to mine, for everything from routine stuff, to trying to remember what I had when, to being able to hopefully reply to threads on Komen.
 
Last, but not least, please don't be afraid of whatever injections you are told you need post each chemo (if any).  I had Neulasta 24 hours after each chemo, to keep my WBC's up.  I also had Procrit injections to keep my hematocrit and red blood cells up (goes to energy).  I'm pretty sure that these have been updated to newer, better meds, but I can only share what I know.
 
Don't panic, don't despair, don't look at the length of time you are facing treatment.  Do what you have to do to get through each day.  Sleep when you need to, cry when you want to, and take control of the remote!  Seriously, it is tough, it is rough, but it is life saving. 
 
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





Cindy D.
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Re:My tips for chemo... - Friday, February 20, 2009 7:23 PM
Here's what I remember, in no particular order:
 
1. The chemo room was always cool so I always wore long pants, shirt and sweatshirt.  And I still enjoyed getting the warmed up blankets.
 
2. I usually wore sweatpants to be comfortable in the chair for hours.
 
2a. Without cable tv, there is absolutely nothing on tv during the day.
 
3. I did not realize that you could unplug your IV from the wall and walk to the bathroom, until I saw someone else do it.
 
4. Emend and Zofran are my best friends.
 
4a. The benedryl they give you before taxol will make you fall asleep in no time. I slept at least an hour each time.
 
5. Eating small meals, several hours apart during the day is helpful.
 
6. Eat what tastes good, when it tastes good. For about a week I ate hamburgers every night, for another week I would stop at McDonalds for fries and a shake, but no burger on my way home from work.
 
7. Orange sherbert, ginger ale, and sprite tasted good, milk did not.
 
8. Bring a friend with you when it's time to pick out your wig.
 
9. If you need a prosthetic, have it professionally fitted.
 
10. Accept the offers of help from friends and family. We were especially grateful when we would get home from work and someone had left a meal for us during the day.
 
11. Call your doctor if you need stronger pain meds... there's no need to be in pain.
 
12. Have a good cry every now and then if you need it.
 
take care,
cindy d. 
 
Mass. 
56 yrs old
dx 1/10/07
Stage IIIa
ER/PR +,Her2 -
chemo: 4ac/4 taxol  5/24/07
lump: 6/18/07
mast: 7/16/07
tamoxifen: 7/25/07-2/9/09
rads:  10/25/07
clinical trial: avastin and xeloda, 12/07-11/08
arimidex/lupron: 2/09/09-12/28/11
clinical trial: femara 1/1/12 9 months on, 3 months off

kathyann
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Re:My tips for chemo... - Saturday, February 21, 2009 8:55 AM
You ladies covered it so well! One thing to add is to make sure you have a change of clothes handy in case your iv leaks. Mine did and thank goodness I had an extra sweatshirt in the car since they made me throw my shirt away. Otherwise, would have ended up going home in a johnny.

Kathyann
kathyann, 48, 2 girls 11 & 18, wonderful hubby, maine, dx 12/11/07, inv.lob. stage 2 lumpectomy 1/23/08, 1+, 8 -"redo" 1/29/08bi lateral mastectomy w/ expanders 4/4/08port input 5/1/081st TAC chemo 5/8/08
Last chemo 8/21/08 Rads done 1/16/09, recon 5/4/08

Pat Patterson
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Re:My tips for chemo... - Saturday, February 21, 2009 9:14 AM
Deb - I could not have said it better myself!  I am only a few months out and I had the Neulasta shot and the Procrit as well.  You are not as outdated as you think!  Have a great weekend everyone and GOD BLESS to all starting chemo next week.  Just sing the words to "I WILL SURVIVE" over and over in your head!  Pals
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

DJW
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Re:My tips for chemo... - Saturday, February 21, 2009 11:48 AM
Deb.

Thank you so much for posting this. It will be extremely helpful to the people beginning chemo. The new forums will include one for people going through chemotherapy, and this is a very important message for them.
Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

cejkwj
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Re:My tips for chemo... - Saturday, February 21, 2009 12:11 PM
Long time lurker, first time poster.  I'd like to add its important to keep the fiber in your diet during chemo. 

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

Keisha
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Re:My tips for chemo... - Saturday, February 21, 2009 4:44 PM
I had my first round of AC on 2/13/09.  I was sleepy from the meds and rested the whole weekend.  I don't have much of an appetite but I'm eating small portions. Feeling better as the days go by hope the next round isn't bad.  I took Emend which is great haven't experienced any nausiness (spelling).  I have cut my hair short so it won't be so traumatic.  I'm staying positive and getting plenty of rest. Mouth wash I have is called Biotene and it's from Walmart.  So far so good.

42 years old
diagnosed 11/25/08
lumpectomy 11/17/08
med port 2/3/09
Partial mastectomy 12/31/08
triple negative
invasive ductal carinoma
5 1/2 centimeters
 

Cindy D.
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Re:My tips for chemo... - Saturday, February 21, 2009 5:55 PM
oh, and find out how many trips to the center you will have... I thought I had to show up every other Thursday for 8 treatments, and I'd be done...

After the first A/C, they said, we'll see you tomorrow for neulasta and next Thursday for blood work... so instead of 8 visits, it was a total of 24!!

I could show up whenever during the day for the neulasta, and the blood work was scheduled for after work, so they fit into my schedule, but it was a bit of a surprise.

take care,
cindy d.
Mass. 
56 yrs old
dx 1/10/07
Stage IIIa
ER/PR +,Her2 -
chemo: 4ac/4 taxol  5/24/07
lump: 6/18/07
mast: 7/16/07
tamoxifen: 7/25/07-2/9/09
rads:  10/25/07
clinical trial: avastin and xeloda, 12/07-11/08
arimidex/lupron: 2/09/09-12/28/11
clinical trial: femara 1/1/12 9 months on, 3 months off

Keisha
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Re:My tips for chemo... - Saturday, February 21, 2009 6:58 PM
I forgot to mention the visit for the shot and the blood work.

REBECCA ELLEN
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Re:My tips for chemo... - Saturday, February 21, 2009 7:08 PM
GREAT TIPS DEB!!!

I'll second the suggestion to keep the fiber in the diet - my oncologist said they had conquered the nausea but not the constipation.  It can be awful it you let it get away from you - prune juice and a tea called smooth move helped the most for me - and a few prayers for diarhea!  

Deb Allen
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Re:My tips for chemo... - Sunday, February 22, 2009 12:34 AM
Wonderful suggestions and additions.  While I realize many may not have certain options, I would like to share one thing that saved me and my hubby countless $$$...Since both of us have/had experience in some form or fashion of the medical community, (or were willing to learn) and since we live 85 miles one-way from my oncology team, we were so fortunate to be able to have the Neulasta and Procrit shipped to our home, along with appropriate supplies, so that I was able to inject my self with the Neulasta 24 hours after each chemo, and the Procrit on a weekly basis was injected by my husband.  It saved us time, travel, and peace of mind.  If this is something anyone might be comfortable with, please ask your onc team.  It IS possible, and it's not that difficult, plus I got to go lay down in my own bed immediately after every shot, and say in the comfort of my own home as much as possible. 

Regarding the hair loss, another post for another time, but we all need to chip in and help each other with our own experiences and our individual tips and tricks. 

Luv to all,
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





CMFR1
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Re:My tips for chemo... - Sunday, February 22, 2009 8:15 AM
Great idea. Let me add:

1. Drink tons of water during chemo - through all the weeks of infusions.
2. Get regular exercise - even if its just a 10-15 minute walk each day - it will help with constipation.
3. The BRAT diet is always available if everything else tastes awful.
4. Go to a Look Good Feel Better program offered by the ACS for the positive boost (and free make up).
5. Write down your questions and any side effects you experience and bring it to each session to ask your doctor and nurses.

And most importantly, yes it will end, your hair will grow back, and you will feel better.
Caroline
Diagnosed 05/2007, Stage IIA, 1.4cm tumor, ER/PR+, Her2-, lumpectomy, chemo and rads.
1981 Thyroid cancer
Otherwise I am consider myself a professional patient who feels as healthy as a horse on the way to the glue factory as I cope with all my other medical maladies
 

Vera
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Re:My tips for chemo... - Sunday, February 22, 2009 12:12 PM
Great post for the newbies.

I will add that your skin will become terribly dry from chemo, so make sure you moisturize like crazy.

Also, when you don't feel like eating much, you can become constipated & you should have stool softeners handy for those times.

Look at it as 1 less treatment instead of 1 more.  You will make it thru this.

Listen to your body & rest, or sleep when you need to.
Vera 54yrs - NE Ohio
married to a great guy
dx 5/27/08
IDC Stage II
Er+PR+Her2-
Lumpectomy clear margins 6/20/08
Tumor 2.3cm
2/9 nodes+
4 A/C &12 Taxol Done - Rads -DONE
Putting on the BIG GIRL PANTIES and Combat Boots

Deb Allen
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Re:My tips for chemo... - Friday, February 27, 2009 6:34 PM
   
Well, I absolutely welcome the new forums menu (I especially like the different categories), but it seemed like it took me 4 forevers to get to where I could reply or post to anything.  May be my 'puter     Or it maybe the traffic as we try to navigate the new highways and by-ways, not to mention the mix-masters...  Seriously, I am thankful to see topics in an outline format.  Now, back to what post I think I was posting too...   (that's supposed to be me scratching my head, not the pox!!)... Chemo tips, one other or two things I thought of was to keep a supply of fruit based popsicles for when you have no taste buds, and the yucky mouth feeling.  Plus I want to emphasize the need for fiber, stool softeners, etc.  Oh yeah, I found out the hard way what helps the most when it comes to shower time.  My hubby and I have a "stand up" shower   in our bathroom, and there were many times when I just didn't have the strength to stand up.  SO, we bought a "shower stool" and one of those extendable, adjustable shower heads so that I can sit as long as I want, adjust the volume and direction of the shower spray, and if necessary, David can even strap me in so I don't fall over  (ok, that last part was kidding) but when you can sit and let warm water pulse over you at your speed and temp, it is worth everything.  Just make sure you don't try this when you are alone (hot water, fainting...  NOT a good combo), and work out a signal so that you have your time, and so your significant other knows when to check on you.  Once you get out of this bliss on earth, have a big ole fluffy towel to drape yourself in, and don't rub dry, PAT dry, saving your skin from further dryness.  Try it, It works.  Let me know!! 
Luv to all, Deb/aka Mimi





[link=http://www.smileycentral.com/dl/index.jhtml?partner=ZSzeb114_ZCxdm869MOUS&utm_id=7922][/link]
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





Tricia Keegan
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Re:My tips for chemo... - Friday, February 27, 2009 6:44 PM
Very helpful Deb and thanks!
I moved your post here as I felt it would be especially helpful to anyone starting chemo that has'nt actually posted yet. We may have a few teething problems but we're getting there!
Thanks for the input..
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

sue_h
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Re:My tips for chemo... - Friday, February 27, 2009 10:17 PM
Great tips!  I also want to add a couple:

-Make sure to tell your nurse or oncologist all of your symptoms, because you never know what's going to be important for them to know. I mentioned conversationally to my chemo nurse that I was starting to get neuropathy in my feet, and after asking me a bunch of questions, she conferred with the oncologist and I ended up finishing chemo two treatments early because they were worried the risk of permanent damage outweighed the benefits of my last two treatments.

-Take your anti-nausea meds at the first sign of discomfort. The only time I ever threw up was when I put off taking the meds.

-If you get a wig, you can wash it with baby shampoo and it will turn out fine. No need for that expensive (and huge) bottle of wig shampoo.
 
-If you can manage it, make room in your daily schedule for a nap. You may not need it at first, but the longer you go, the more tired you'll be.  I'm really good at falling asleep while sitting upright in a chair now!

-You will probably gain weight. My onc says most of her patients gain 10 to 15 pounds.

-It can take up to six months after you stop treatment to get your full energy back.

Sue

jaspielman
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Re:My tips for chemo... - Sunday, March 08, 2009 10:16 PM
hemp protien powder 45% fiber gets ya moving in no time!
Julie  in Oklahoma  45
2 kids 25 21 3 dogs
1 wonderful husband
SURVIVOR 2009
THIS IS CANCER IT IS TIME TO TAKE OFF THE BIG GIRL PANTIES
AND TIME TO GO COMANDO!
AND KILL IT ONCE AND FOR ALL!


Cindy D.
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Re:My tips for chemo... - Wednesday, March 25, 2009 11:33 AM
Just a bump to get this to the top of the threads!!

cindy d.
Mass. 
56 yrs old
dx 1/10/07
Stage IIIa
ER/PR +,Her2 -
chemo: 4ac/4 taxol  5/24/07
lump: 6/18/07
mast: 7/16/07
tamoxifen: 7/25/07-2/9/09
rads:  10/25/07
clinical trial: avastin and xeloda, 12/07-11/08
arimidex/lupron: 2/09/09-12/28/11
clinical trial: femara 1/1/12 9 months on, 3 months off

Mhmama
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Re:My tips for chemo... - Thursday, April 30, 2009 3:14 PM
I had my first chemo in July 2008 but it took me a while to learn one very important thing......  If you are feeling weak, sore, nauseous, or any other problems, call your doctor or in my case, my chemo nurses.
I thought it was normal to feel weak and be unable to get out of bed.  Turned out I not only needed to be hydrated but my WBC was so low that I ended up in hospital for 6 days.  My doctor and my nurses gave me a long lecture about calling them whenever I didn't feel "right" and after that I did.  I ended up having to be hydrated twice a week throughout the chemo and having to have my A/C chemo cut 25% due to complications. 

Deb Allen
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Re:My tips for chemo... - Thursday, April 30, 2009 4:24 PM
That is a great reminder.  I know even though I was on Neulasta and Procrit to help boost my WBCs and HCT/HGB, I still ended up with a neutropenic fever.  Anything feeling you have that ain't quite right...let them know.  Thanks.

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





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