chemo tips

sgishelly · Posted: Wed Dec 22, 2004 10:54 am Post subject: chemo tips

Hello everyone,

Well my surgery is overwith and the path report came back. They found the primary tumor in the axillary tail behind the lymph nodes, it was 1 cm. I had 3+ / 14 lymph nodes. The largest of which was 4 cm. But the doctor said he'd rather see fewer large nodes than many small nodes. One of the nodes had microscopic extracapsulary extension so that means radiation after chemo.

Anyway, now that the surgery part is over, I'm beginning to think about the chemo part. And I'm dreading it big time!! I'm due to start in mid-Jan. Does anyone have any tips on making it easier?? I am mentally prepared for losing my hair...at least I think I am. I plan on getting it cut really short after my treatments begin. I have read so much on how this affects everyone and I hope I'm ready for that part. I especially am worried about the nausea part. Someone told me to bring a cooler with me and drink as much as I could while receiving the chemo to stay hydrated. Any other tips would be appreciated.

Merry Christmas!!
Shelly

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Shelly,

Now that your surgery is over you can continue to KICK CANCER BUTT. You've already did a very large part by having the surgery. And remember that positive nodes do not guarantee that you will have a recurrence down the road. Many women with positive nodes go on to do very well.

Here is a helpful chemo site: www.chemocare.com You'll find a lot of good tips, including eating healthy during chemo.

This is what worked for me:

Drink lots of water the day before, during and after. During treatments I always drank from my water bottle. I kept refilling it during the chemo treatment. The chemo enters your body and does its job of killing cancer cells and then you want to get it out of your body asap. That's what my chemo nurse told me. The best way to do this is to drink lots of water! Also, if you received A/C you want to eliminate it from your body quickly. My chemo nurse told me to get up in the middle of the night the first night to make sure I emptied my bladder. A/C can be nasty sitting in your bladder. In fact, it's a good idea to drink lots of water during the entire chemo experience.

I had one of those nutritional drinks (Boost) every day to get extra protein. This was also suggested by my chemo nurse.

Eat whatever appeals to you. For me, it was rotisserie chicken and Nesquick cocoa. LOL My sweet DH was always running out to pick up the rotisserie chickens! Smaller meals work best for most folks. There were some foods I developed an aversion to and I just avoided them.

Take your anti-nausea meds around the clock for the first 3-5 days. I took them for the first 5 days. I even set the alarm clock. I was very diligent about taking my meds on time.

I can't help you too much with the hair thing because that just didn't bother me too much. It was kind of nice not having to mess with hair every day! LOL Even now, I'm sporting short 'n sassy cuts because I got so spoiled during my chemo days. I had never had short hair in my life and I discovered I looked great in short hair! LOL

Good luck. You'll do fine. Remember, lots of people get through this and so will you! If you have any more specific questions during chemo, ask away and someone will answer them for you.

Happy Holidays,

Margie

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Shelly ~ I forgot to mention one very important thing - constipation. The constipation is very real and can be very serious. My advice: Be preapred before it hits. Many women take Senekot. I didn't use any drugs. Instead, I drank prune juice and ate dried fruits, esp. raisins. Ask your oncologist or chemo nurse what they recommend. You should always check with them before you add any drug, even an over-the-counter type.

Take care.

Margie

Pastor Rich · Posted: Wed Dec 22, 2004 3:30 pm Post subject: Re: chemo tips

Hello Shelley;

My wife was diagnosed ILC with 10/14 nodes positive. The good news is that the oncologist has said that after chemo and radiation she has less than a 10% chance of recurrance.

So far as chemo goes, my wife had heard every horror story out there from well-meaning people who should keep their mouths shut, IMHO. ([b]Not[/b] on this board or www.breastcancer.org, BTW). Her own sister kept referring to it as "draino." The reality was very different.

She drank litres and litres of water before the 1st chemo and all the time since. We were prepared for a lot of nausea and I had a "barf-bucket" all ready to go beside the bed. Around 8pm she felt a bit queezy so she took the extra nausea pill and then some gravol as directed. I also got a number of on-line friends to pray and the nausea went away. [b]It has not returned and we are approaching chemo #3 on Dec 31.[/b] Her appetite has been fine, too.

I guess what I am saying is that you should be prepared by doing what the chemo unit tells you to do. They said "drink water," and my wife drank water. They said "take your meds," and my wife took her meds right on time. If they had said 'stand on your head," I would have insisted she do that as well..... This does not mean all will go as well with you as it has for Cathy, but it should give you the hope that it is not all doom and gloom like some people like to say.

Cathy did not think she would be bothered by her hair, until it happened. She got it cut short around day 14 and it was hard on her. She was surprised at her reaction. It still is a little prickly so I took my electric trimmer and got the rest off last week.

Hope this helps. If you can get some people lined up to pray for you it will help.

Blessings,
Pastor Rich
_________________
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:6-7

sgishelly · Posted: Wed Dec 22, 2004 4:33 pm Post subject: Re: chemo tips

[b]Margie,[/b]

Thanks for your advice. I'll keep it in mind. Have a wonderful Christmas and a happy healthy New Year.

[b]Pastor Rich,
[/b]
I'm so glad to hear that your wife is doing well with the chemo. I know prayer does make a difference and it seems like I have half the country praying for me now. I get cards in the mail from churches that I'm not even sure who goes there...but I'm thankful for every prayer I can get. I have family in FL, GA, NC, KY, TN, CO, IL, MN, Japan and the Turks and Caicos Islands and friends in HI, WA, and everyone has put me on the prayer lists at their churches. It is amazing the people who will come to support you when something like this happens. I'm truly amazed everyday.

I've heard to drink lots of water from everyone I've talked to so I guess I'll plan to do that.

Hope your wife continues to do well and that you all have a very merry Christmas and a happy healthy new year.

Shelly
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

Muttsmom · Posted: Wed Dec 22, 2004 6:27 pm Post subject: Re: chemo tips

Hi Pator Rich,
I want to ask a question, but not sure how to without sounding like a gloom and doom. I'm almost 3 years out and was also Stage III ILC, so I know that we can do well. The AMS says a totally different stat then your onco told you and your wife, which I know stats are just that, numbers. What did he base his 10% chance of reoccurence on? I know being 43 when dx is against me, and my onco doesn't like giving stats or odds because he said it's all a crap shoot. I had the FEC too, just like Cathy and again, so far so good with me and I'm thrilled about that, but I was told it was about a 50/50 chance of having a reoccurence at stage III, but being er/pr+ helped and made it more in my favor.
Thanks
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

ann hollis vail · Posted: Wed Dec 22, 2004 10:20 pm Post subject: Re: chemo tips

Shelly,
I know you must be so anxious about the chemo...I know they have many new drugs that make the nausea better. I will find some of the articles I kept on chemo and pass them on to you... Yeah ! for the successful surgery and that the tumor is small... It sounds like they are going to do everything possible to treat and tame the beast. I know you are in good hands. I have been cleared by Vista to go to Moffit, so I will be scheduling for sometime soon.... love you, Hollis

Pastor Rich · Posted: Wed Dec 22, 2004 10:35 pm Post subject: Re: chemo tips

Hi Muttsmom;

Cathy is 54 and the hormone tests were positive.

Some of the newest studies this year with ILC show that the outlook is far better than previously determined. Lobular is usually diagnosed later than ductal and has a higher stage at time of discovery, but it responds much better to treatment by something like 30+%

I don't know how the oncologist got to his numbers.... He was the radiation onc. At our hospital we have seen almost every onc. doctor from visit to visit. None wanted to give stats untial after all the tests including hormone status. But I think one of them did say that without treatment, chance of recurance was 50%. With chemo it was about 20-30% better. So the numbers start to line up.

Rich
_________________
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil 4:6-7

Marion · Experienced user Joined: 28 Nov 2004 Posts: 60

Hi Shelley: I agree with everyone else -- water, water, water. I was like you and had heard all the bad stories and had myself prepared. I just finished my 3rd treatement today and have never had problems with nausea. Headache for the first day and tired on the second day but other than that have felt good. Everyone reacts differently. A positive attitude goes along way with making the process easier I found. One tip that a friend told me that has been my savior...you may start to get mouth sores because the chemo dries out the mucus membranes. Get Biotene toothpaste and Biotene mouthwash. They put back the extra enzymes that are being taken out of your system and stop the sores from developing. I wasn't sure how I would handle the loss of hair. I cut it short twice to get used to it and when it fell out, it was a depressing day. Now I'm used to it and so is the family so it's not a problem. Good luck. Our prayers are with you.

Marion

RachelEsther · Posted: Fri Dec 24, 2004 11:35 am Post subject: Re: chemo tips

Hey! Let's hope that for you, as it was for me, the anticipation was much much worse than the reality! I did really well on chemo. After all the things they read to you about side effects, I know that you can only picture yourself lying in bed retching for days. But that doesn't happen to everyone. In fact, I NEVER HAD ONE MOMENT OF NAUSEA! So be prepared, but don't assume it's gonna happen to you.

I agree with what the other women have posted, but the water is more for flushing your body than for hydration, I think. And I got hungry while I was being infused (or bored!) so bring something to eat also. If you don't have a port (I didn't) bring something to do that does not require much hand moving, since you will have the IV in. Wear comfy clothing so you can nap, I loved my sweats and thick socks.

As far as meds are concerned - I had dose dense - 4AC then 4Taxol 2 weeks apart. I took 2 anti nausea meds - Emend (hour before chemo, next morning, morning after that) and either Kytril or Anzimet (the doc gave me samples) chemo night, and the next 2 mornings and nights (nights optional). And never a moment of nausea. Emend is new, it's expensive, but for me it was terrific. That was during the AC. No one really told me that I wouldn't need it for the Taxol part, so I did the same thing for 3 out of 4 taxol. Stupid me. Anyway, the last taxol, I took nothing, and was just fine. Apparently taxol is not nausea producing for most people.

On AC, I always had a lost day - Monday after chemo Friday. Sometimes it was a day or 2 more. However, I was tired, and conked out much earlier each night than usual. And got up really early! Which I really liked. I could do normal things, but did not have alot of energy, and the idea of dragging the laundry basket up and down 3 flights of stairs really didn't appeal to me. I also coddled myself and didn't do to much - on the 3rd AC, I spent 5 hours cleaning the basement, lifting boxes, etc, and that laid me flat for days and days, so I was very protective for the rest of the time. Too protective maybe. Taxol was much easier. The steriods make you a bit peppier, and I found my energy coming back a bit.

By the way, my taste stayed the same throughout. I always ate a big meal on chemo night, and my appetite did not (unfortunately!) go away, although as time went on, I found that smaller more frequent meals were better than the usual three. I never got mouth sores, but for about 2-3 weeks my mouth was sensitive to my usual toothpaste and mouthwash, so I switched to Biotene, which worked great.

If you are getting Neupogen or Neulasta shots, you may get some bone/muscle/joint pain - I took ibuprofin and it went away.

For Taxol, look into taking L-Gluetimine (sp?). Some people recommend taking it every day while you are getting chemo, my nurse recommended it for a few days after each Taxol. It is supposed to help with avoiding neuropathy, and other Taxol side effects. I sometimes took it, sometimes not (bad with these things!) but I had little neuropathy (a bit of numbness on the soles of my feet, went away by 5 months post chemo; some messed up fingernails, grew out).

Good luck, girl! Get your wig and scarves and happy videos ready, and step out onto that road that none of us wanted to take. The good thing is, that although the end is not now in sight, you get there somehow, sooner than you can imagine, and healthy! It's all just temporary, all this chemo. Living long, now, that's the thing you have to keep your sights on.

Rachel
_________________
Rachel
Age 50 at diagnosis, Stage IIIA
IDC grade 1, DCIS grade 2
LB Mastectomy, Expander Recon 3/3/2004
Dose Dense Chemo completed 07/01/04
Radiation completed 09/02/04
Silicone Implant 11/22/04, removed 7/05 due to infection (dental cleaning), replaced 12/05. Reduction RB for symmetry 04/06
Tamoxifen 10/04-10/06, Arimidex 10/06 on

Muttsmom · Posted: Fri Dec 24, 2004 12:36 pm Post subject: Re: chemo tips

Hi,
I know I already added my 2 cents, for here's another cent worth... lol I did have a horrible taste in my mouth, but it wasn't metallic, it was what I would think road kill would taste like (I'm a huge animal lover and it upsets me to see a poor critter on the road, so I definately don't know what it taste like...ugh) but my taste buds came back not long after chemo. I will say that a friend suggested tomato soup which I've never liked, but it did taste good during chemo. I think my big thing was chicken.
There were days I'd go shopping, mow the yard (riding of course...lol), work in the flower garden and do whatever I felt like. I think fatigue is a given, but I had days that I felt like I was perfectly fine and wasn't going through treatment. The treatment is over with and you'll look back in amazement that a year has already passed.
The bottom line is it's doable. I don't ever want to go through it again because I don't want this disease to ever rear it's ugly head again, but the treatment is nothing when you realize why you are doing it. I had neuropathy also and took Neurotin for awhile. Any side affects besides fatigue IF you have them, there is something you can take to help and again, it's SO worth going through knowing you'll soon be able to start your new life after cancer. Smile

Take care and keep in touch. You're going to do great!!!!!!!
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

sgishelly · Posted: Fri Dec 24, 2004 2:52 pm Post subject: Re: chemo tips

Thanks to all who have responded so far. I'm really glad to hear that many of you had very little or no nausea. That makes me feel so much better. And some of the other advice will come in handy...like the Biotene toothpaste and mouthwash. I'm ready to get this started now...I'm mentally prepared...and I'm going to kick some cancer butt!!!

Keep the tips coming. Every little bit of help I have will be appreciated. I'm still dreading the chemo but I know that I can get through it because of all you guys that have done it.

Merry Christmas!!!
_________________
Shelly
Dx Nov 1, 2004 at 40 y/o
Right MRM, Left Simple Mast. - 12/9/04
Stage 2A IDC -
Primary tumor 1cm
3+ / 14 nodes, ER/PR+, HER2-
34 rads - finished 5/25
chemo - AC and Taxol FINISHED 7/6/05
beginning reconstruction 2/06
brain mets 4/06 - now stage 4

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Shelly ~ You might want to ask for Emend. Most people who have tried this anti-nausea drug have had great results with it. I took Kytril and Compazine and had some problems. Then they switched me to Ativan. I wanted Emend but I could not get it. It's worth asking for. With the drugs I was on I still had quite a bit of nausea. I did have some vomiting. Not saying this to scare you, but I think it would be in your favor to ask for the Emend. It just sounds like a superior drug. Just a thought.

Merry Christmas,

Margie

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