notes from a chemotherapy thread in alt.support.cancer.breast

Subject: Re: Chemotherapy
From: Catharine Honeyman cathony@spamcop.net
Date: 10/17/00 11:50 PM Eastern Daylight Time
Message-id: <20001017235014.239$8I@newsreader.com>

Robbyn wrote:

> I'm going to be starting chemotherapy next week - Cytoxan and Adriamycin (Cyclophosphamide and Doxorubicin).

Brr.

> I'd appreciate any tips/advice you have to offer.

Eat a big meal before you get your first treatment. I had no effects during the first treatment. Afterwards, I went back to my hotel and took a nap... woke up and felt weird. Had problems sleeping that night, and weird, awful dreams. Woke up the next day, and nausea started.

The second day after that, I was confused. That's "chemo-brain."

Get as many anti-nausea meds from your doc as you can, and try them all, in various mixes. For me, the nausea peaked on the second or third day after the treatment, and then rapidly got better. One of the things that helped for me, oddly enough, was keeping my mouth very very clean (floss and brush after each meal) and chewing sugar-free gum.

And beware teh "blorp!" That's what I called the surprise vomit! The drugs are actually very good at keeping you from vomiting, but they didn't do very much for my nausea. However, about a week after the third treatment, I was minding my own business, feeling fine, when: "Blorp!" I threw up without feeling like I needed to!

And yes, I missed my waist-length hair much more than my breasts. But now it's about 2" long and I kind of like the short length. It's very convenient.

I highly recommend cutting your hair very short right before it should fall out. I think that's gotta be less traumatic.

--
Aloha,
Catharine

Eat that which is good, and let your soul delight itself in fatness.
--Isaiah 55:2
 

Subject: Come On Re: Chemotherapy
From: Boomer Boomerunderscorebaby@hotmail.com
Date: 10/18/00 5:32 AM Eastern Daylight Time
Message-id: <39ED6E4A.250F@hotmail.com>


--
Ladies and Gentlemen...
There are over 50 of us lurkers and non-lurkers......

any more suggestions for Robbyn?????????????????????????

Water water water
and Hugs
Boomer

(c)¿(c)¬
~
Windows only crashes because General Fault outranks a Kernel.

 

Subject: Re: Chemotherapy
From: Boomer Boomerunderscorebaby@hotmail.com
Date: 10/18/00 6:37 AM Eastern Daylight Time
Message-id: <39ED7D80.6CAA@hotmail.com>



I love the http://www.noah.cuny.edu/cancer/ site.
Here's a bit more info:
http://www.noah.cuny.edu/cancer/cancercare/patients/briefs/chemo.html
and lastly.................
http://www.bannerhealthaz.com/services/cancer/chemo.html

Hugs
Boomer
--

(c)¿(c)¬
~
Windows only crashes because General Fault outranks a Kernel.

 

Subject: Re: Chemotherapy
From: allan grossman abuse@localhost
Date: 10/18/00 7:41 AM Eastern Daylight Time
Message-id: <dn1rusompnpdrp66qkdjlkgt9mbl1eq876@4ax.com>

On Tue, 17 Oct 2000 19:47:59 -0400, Robbyn <not@thistime.com> wrote:


Robbyn -

Everyone's experience with chemo is different and the ladies on thelist can advise you a lot better than I can but I have a couple of tips.

Unfortunately with AC there's not much doubt that you'll lose your hair - but it'll grow back. My wife Deborah's hair is about 2" long now too - and it's starting to curl. A lot of women may tell you that losing your hair is as traumatic as losing a breast.

Drink lotsa water and park at your onc's doorstep if you have any vomiting. There are lots of things they can do - and although what Deborah called a "wobbly stomach" is pretty normal for about day 2-5 after treatment between the Decadron and Zofran or Kytril or something else there's a lot they can do to keep nausea and vomiting under control. Take all the antinausea meds even if you feel okay - Zofran and Kytril don't work worth beans if you're already vomiting. They keep you from getting sick so stay on schedule with the antinausea meds. They'll probably write you a script for Compazine for any breakthrough nausea. Deborah found that Compazine brought its own set of issues but I think for most people it works just fine. Remember that your onc *can* adjust dosages or eliminate some meds you might have problems with - Deborah is hypersensitive to Benadryl - they eventually had to cut it out of her premeds completely.

The premeds they give you will probably cause a sleepless night or two - that's normal. Expect to be tired after chemo - but you'll do fine.

On the hair thing you might give some thought to cutting it short soon as it'll make a pretty huge mess about 14 days after your first treatment. Sleep with a hair net on to keep the stuff out of the bed and get one of those screen thingies that go in the bathtub drain to keep hair from clogging the bathtub.

Deborah lost her hair pretty evenly and was able to hide the fact that she was losing her hair for about a week and a half after it started coming out - when she couldn't hide it anymore we shaved her head. Some people will tell you this is a good idea - both for physical and emotional comfort.

You're the customer, Robbyn - the onc works for you.

You can do this - we're all behind you.

hugs -

allan grossman
http://www.cancersupporters.com
take this, spambots!
abuse@localhost
postmaster@localhost
root@localhost
humans can reach me at wizard at cancersupporters dot com

 

Subject: Re: Chemotherapy
From: "R. Chandrasekaran" chandra@waymark.net
Date: 10/18/00 12:34 PM Eastern Daylight Time
Message-id: <surd8lreq5aaca@corp.supernews.com>

As others have already noted:

Kytril, Compazine for nausea
Senakot or some thing similar for constipation induced sometimes by the above.
Things like ensure, apricot nectar etc ( a variety because you do nt know what you might not like)
Plastic utensils? (in case of metallic feeling)

Dring fluids -- if you are a small frame person in extremely rare cases (this happened to my wife) cytoxan may have an effect called hyponatremia. Check with your doctor.

It seems to hit hard on second and third days after the chemo.

Adriamycin will in most cases affect your hair. But it grows back after the chemo.

Our prayers and best wishes for an uneventful chemo.

Sincerely yours,

R. Chandrasekaran

 

Subject: Re: Chemotherapy
From: "Rachel Kirk" Rachel.Anne.Kirk@ukgateway.net
Date: 10/18/00 10:22 AM Eastern Daylight Time
Message-id: <8skf7i$m99$1@lure.pipex.net>

I'll be thinking of you next week Robbyn! I had CMF so I don't know much about the exact side effects of Adriamycin. I echo everything that has been said about hair ( I had mine cut short and it's still short 2 years on because it looks great! ), water.....just keep sipping ( I also had camomile tea but can't even bear to be in the same room as the stuff now....negative associations I expect! ) food before chemo, ( I couldn't face a big meal but I kept eating a little bit at a time all morning while the chemo was being given. I mainly ate big German bread pretzels because they were filling but plain. We were living near Munich at the time!!! ) Exercising is fine but listen to your own body....it'll let you know pretty quickly if you're overdoing it. One of the girls I had chemo with carried on running throughout and getting fit fo the ski season....I took it as an opportunity to slow down a bit and live life at a gentler, kinder pace for a few months.
Don't forget to schedule some treats just for you.....you deserve it!!!
Hugs
Rachel
Robbyn <not@thistime.com> wrote in message
news:bOTsOccpqJlQvGC7lYiThuISzJTE@4ax.com...
 

Subject: Re: Chemotherapy
From: Robbyn not@thistime.com
Date: 10/18/00 11:41 AM Eastern Daylight Time
Message-id: <bsPtOWiHOAnFobxYCr2eaQVZ8OQt@4ax.com>

On Wed, 18 Oct 2000 16:22:53 +0200, "Rachel Kirk"
<Rachel.Anne.Kirk@ukgateway.net> wrote:

>water.....just keep sipping ( I also had camomile
>tea but can't even bear to be in the same room as the stuff now....

LOL - I can't stand to be in the same room with it now! Hate the stuff - though my SO uses it occasionally when she's having trouble sleeping. I take the point about the water though and will plan to have a goodly supply on hand :)

>food before chemo, ( I couldn't face a big meal but
>I kept eating a little bit at a time all morning while the chemo was being
>given.

Really? While the chemo was administered? <amazed> I guess I'll have to think about this eating thing.

> Exercising is fine but listen to your own body....it'll let you know pretty quickly if you're
>overdoing it. One of the girls I had chemo with carried on running
>throughout and getting fit fo the ski season

I suppose you have to admire that kind of determination not to let the cancer (and its consequences) change your life. Not being a skier (not suicidal :) I think I'll pass on the running and stick to the walks :)

>Don't forget to schedule some treats just for you.....you deserve it!!!

Homemade macaroni and cheese! My favorite comfort food :)

Thanks Rachel - this all helps so much.

Robbyn (for whom the THOUGHT of nausea makes her nauseous!)


To reach me by email, send to moonwolf at ici dot net.
Sorry for the inconvenience, but the spam was getting
to be to much!
 

Subject: Re: Chemotherapy
From: Robbyn not@thistime.com
Date: 10/18/00 11:44 AM Eastern Daylight Time
Message-id: <qsTtOd2oZb72KuCxmJeeCgRrfzrJ@4ax.com>


>Senakot or some thing similar for constipation induced sometimes by the
>above.

Good point, I hadn't thought of that...

>Things like ensure, apricot nectar etc ( a variety because you do nt know
>what you might not like)

Also a good idea. Does chemo affect the way you taste things? Might something I love taste foul to me while I'm having the treatment?

>Plastic utensils? (in case of metallic feeling)

Already prepared for that one :)

>Adriamycin will in most cases affect your hair. But it grows back after the
>chemo.

I'm trying hard not to get too freaked out by this :)

>Our prayers and best wishes for an uneventful chemo.

Thanks most kindly and sincerely :)

Robbyn
To reach me by email, send to moonwolf at ici dot net.
Sorry for the inconvenience, but the spam was getting
to be to much!
 

Subject: Re: Chemotherapy
From: "Alex Koffman" akoffman@mediaone.net
Date: 10/18/00 2:20 PM Eastern Daylight Time
Message-id: <URlH5.60704$tn.1241492@typhoon.ne.mediaone.net>

I had Kytril and Zofran ( zofran given IV ) and Kytril by mouth, these are expensive drugs but I did not experience one bit a of nausea or vomiting. Compazine is an old drug and very cheap, it is not as effective against nausea as the above drugs. The Kytril and Zofran have to be given at the time of chemo or they won't work.

I you are goin g to get a wig, I would do before my hairloss. I also cut and shaved my head prior to chemo.

I didn't feel the effects of the chemo until the next day and then it was like flu like symptoms. The day I got my chemo I felt pretty good. The loss of my hair was much worse than surgery for me. The good news is when my hair grew back the gray was gone!  Lastly, I don't know how old you are, but if you still get priods, they will never be the same again. If you are premenopausal you have a good chance of getting hot flashes.

My Onc prescribed Ativan (Lorazapam) for my nausea, and it is the one thing that worked so very well for me. It also made me tired, so I slept at night. Oh, I do know one thing that has not been mentioned here, did you have a port-a-cath put in, or will they be using your veins? I do not have a port-a-cath, and the last treatment of AC that I had was difficult, because the nurses had to all take turns poking me, trying to find a vein.

I had AC before surgery, with Taxol now after surgery. When I went into surgery, I asked my surgeon to put in a port-a-cath, and she told me I had great veins, and would not need one. I told her that is not what the Onc nurses said, so she suggested, (and here is my BIG tip of the day) that I have a heat pack on my hand and arm on the way to the clinic. If you have your veins warmed up, they tend to pop up better, and roll less. I have this wonderful heat pack that you put in the microwave, and I take that with me.

Now, on drinking water.. drink as much as you can before treatment, this also helps with the veins! Also, drink as much as you can AFTER! Immediately after you have chemo, try to go to the bathroom as often as possible too. You want to get the "A" flushed out of your kidneys.

And yes, eating before treatment is very recommended. I did not eat before my first treatment, and my Onc made me go down to the coffee shop and eat something before he would allow me to have treatment.

One thing you asked about food and tastes, tastes can, and probably will get messed up for you during treatment. Also, the one thing that bothered me the absolute most was SMELLS. I am not sure if this is common to all or not, but I could not stand the smell of anything! I do mean that. Anything at all that smelled like anything drove me batty. I spent many hours outside in the breeze to flush out my sinus. Things that taste bad will taste good again after treatment, or maybe even between treatments.

Good Luck Robbyn!
Big Hugs!
Tina

Subject: Re: Chemotherapy
From: "Janelle Blight" blightj@netlink.com.au
Date: 10/20/00 8:50 PM Eastern Daylight Time
Message-id: <8sqpg6$pub$1@news.netlink.com.au>

Hi there Cathy,

It is bad enough dealing with cancer let alone loose your hair. My mother is undergoing chemotherapy and she was so worried about losing here hair. I think that it is the worse part of chemo. Luckly where my mother has chemothapy she was offered to go on a trial for using a cap to stop her loosing her hair. It was called a Paxman Cooling Cap and you were it before the chemo and after and the results are fantastic, she is nearlly finished 6 months of chemo and has lost very little hair. She was the 4th person to use the cap in Australia and now there are about 36 women on the trial it is great.


I dont think she would have managed if she lost her hair. So ask you oncologist it is never to late to try it as it generated the growth of new hair.


Janelle Blight
Australia

Subject: Re: Metal Mouth
From: Jay & Shelly Fallihee fallij@nwlink.com
Date: 10/23/00 7:52 PM Eastern Daylight Time
Message-id: <39F4CF32.550C91BE@nwlink.com>

I had trouble with 'metal mouth' during chemo too. Chewing wintergreen gum seemed to help the best. A friend had good luck with lemon drops, but they caused sores on my tongue. Also, even though you probably don't feel like drinking water, it really helps. Good luck. Shelly

Subject: Re: Starting Chemo
From: Robbyn not@thistime.com
Date: 11/15/00 10:36 PM Eastern Standard Time
Message-id: <EFITOukVCvBoOn=lILRlNqf83tB2@4ax.com>

On Wed, 15 Nov 2000 20:18:39 -0500, "Peg Dietrich"
<snpdietrich@acd.net> wrote:

> Ok, people, time to pull out your bad memories and give me some advice.
>Assuming all goes well, I start chemo on Friday. I've got the hair-part
>covered -- got my hair cut really short, bot a wig from the wig bank, and
>cried a whole bunch. Now lets move on to the other bad side effect of
>chemo -- throwing up. Any suggestions? More importantly, *when* did you
>get sick? That day? The next day? First thing in the morning? How
>did/you feel *after* the individual treatments (i.e. that evening)?
>Anything else you can add would help!

Hi Peg

I just had my second dose of A/C yesterday (2 more to go). The worst part for me is during the actual administration of the Adriamycin. For about 30 seconds, despite the preadministration of three anti-emetics (including Zofran) there is a period of extreme nausea. I haven't thrown up either the first time or this time, but I sure wish they'd give me a bucket to hold just in case.

Afterwards I feel weird - not real bad, but certainly spacey - like the world is about a half a beat off. I have compazine for nausea and it seems to do fine though it gives me the burps. That's better than throwing up though.

Over the following three week period, there is diarrhrea (not a change in the pattern of bowel movements but in the consistency) and when I feel the need to go I had better get to a bathroom POST haste. There's no room for negotiation here. When the delivery men arrive, you get to an unloading dock as quickly as possible :)

My sleep cycle changes too. For a while I couldn't sleep any more than three hours at a time. That was a serious pain in the ass though it too can be managed if you time things right. I was able to get enough sleep, I just couldn't get it all in one shot as I used to. This seems to come and go, is not constant and may have as much to do with tension (I tend to sit on things a lot) as with medication.

And fatigue, of course. While it isn't constant either, there are times I get so tired I don't even have the energy to lay down. My SO has to push me over. This doesn't happen all the time and is more likely to take place on a very busy day when I'm not paying attention to my energy levels and just doing things as though everything was completely normal - which, of course, it's not.

I had major chills today - every time I got out from under the blankets I was shuddering. That will probably be gone by tomorrow and I don't remember it happening last time. I don't remember a lot about last time though as it was the first time and most of my attention was taken up in worrying about what to expect and frustration at having to wait for more than two hours to get under way.

I hope things go well and as easily as possible for you Peg. I'll hold a good thought :)

Robbyn

To reach me by email, send to moonwolf at ici dot net.
Sorry for the inconvenience, but the spam was getting
to be to much!

Subject: Re: chemo
From: Catharine Honeyman cathony@spamcop.net
Date: 11/30/00 1:36 PM Eastern Standard Time
Message-id: <20001130133603.355$1f@newsreader.com>

Peg Dietrich wrote:

> Peg
> who starts chemo tomorrow, maybe

Well, have fun! Here is what I have learned about chemo (the good stuff): The chemo nurses are the greatest healers ever put on the earth. The other people you meet in chemo humble you and keep you perking along. You'll never know what a beatiful head you have until you lose your hair. It's also kind of a sick adventure and it really gives me a sense that I am FIGHTING this thing. I feel very brave.

--
Aloha,
Catharine

Eat that which is good, and let your soul delight itself in fatness.
--Isaiah 55:2

Subject: Re: chemo
From: skidor@webtv.net
Date: 12/1/00 3:51 AM Eastern Standard Time
Message-id: <28284-3A27668D-103@storefull-106.iap.bryant.webtv.net>

Hi Jane
My name is Doris and I post here every once in a while, but I always read all the posts and feel like I know all of these wonderful people, they are all great.
Cancer is a scary disease, but somehow we get thru it, I had BC 11 years ago, the cancer is gone but I'm still living with the side effects of the surgerys chemo and tamoxifen.
Now, what I wanted to tell you, when I was doing Chemo, the day before I will rent comedy videos and when I got home I will get in bed and watch videos all day long, somehow this will make me feel better, maybe doing this will help you too.
Warm Regards
Doris Ginsberg

Subject: Re: Food to help w/ chemo?
From: "A. P. Thorsen" apt77@dontsendspam.hotmail.com
Date: 1/16/01 6:43 PM Eastern Standard Time
Message-id: <3A64DCBA.52690873@dontsendspam.hotmail.com>

Doghairs123 wrote:

> Also is there some sort of food (like ginger ale and crackers) : ) that she
> should have with her if or when she feels *not so good* ?

Those are good suggestions (ginger ale and crackers).

I'm sure it differs for everyone, but what I could eat/drink the soonest after AC chemo, were (roughly in chronological order of keep-down-ability):

warm/hot water
room temperature ginger ale (maybe let get slightly flat)
hot milk
bananas
plain crackers (white water crackers or saltine-type crackers)
instant potatoes (they come in a paper cup for lunch use) or potato soup
instant oatmeal with hot milk & sugar
macaroni and cheese

I phased this stuff in during the first 24-48 hours after treatment, starting with very small amounts at a time. Even later (for a few days) it helped me to eat small amounts more frequently (every hour or two), and chew thoroughly. I carried a small plastic bag of the plain crackers, plus some hard candies, around in my purse in case I hadn't had a chance to eat in a while & started feeling queasy.

During the "slow sipping" stage, it helped to put the hot water in one of those insulated travel mugs so it stayed the nicest temperature longer.

But they (onco nurses) tell me I had more trouble with AC vomiting & nausea than most people do, so your friend may be able to handle more foods more quickly than I could. I don't want to be too scary!

Another thing I found -- though it has nothing to do with food -- was that the nausea was reduced if I slept propped up (i.e., semi-sitting) so gravity was on my side. I got one of those wedge pillows people use for reading in bed, which was more comfortable than a stack of regular pillows.

If your friend does have significant problems with vomiting or nausea, make sure she tells the doctor or chemo nurses -- my chemo nurses kept getting different anti-nausea prescriptions for me until the situation improved, and also scheduled me for extra IV fluids with the chemo, and the next day. By the last treatment, my side effects were much reduced vs. where I started out. They were great allies for me, but can't help unless one tells them what side effects one has.

It's great that you're doing so much to try to help your friend. I don't know what I would have done without the friends & relatives who have helped me (staying overnight at my place on the worst days, running errands, doing some of my household chores, bringing me food). Your friend is lucky to have you!

Ann

I do believe that I read somewhere that you should take extra precautions with your skin also when you are exposed to alot of sun. I was told by one of my oncology nurses that a sun blocker with a very high spf [?] rating would be advised. Should be anyway...but this has a tendency to make you skin more sensitive to the sun.

Right now...depending on where you are located.....that might not be a concern. Certainly isn't here right now...I'm actually freezing my @ off up here in Northwest Ohio.

Now this may have no bearing on what you will go through...but I had a terrible time with my hands. My fingers keep drying and splitting open on me.
I was sitting reading a book one night...trying to relax enough to get some rest and looked down at the book and there was blood on the page.
That was an expierence in itself.
The oncology nurse's were ribbing me one day when I came in and I had bandages on just about every finger [good naturedly of course, they are great women] They asked me "been playing with the Ginzu knives again, I see huh?"

Another thing I might want to add here if no one else does...which I have seen others say this in previous posts when someone has asked about chemo.

The oncology nurse's are your best source of information, I think so anyway. They work with these women everyday, and have alot more "hands on expierence" with all aspects of this...more so then the Oncologist themselves.

I will keep you in my thoughts and prayers dear...You, my friend, have come along way just since coming here and posting to all of us...My chemo was different yes [cmf 6 cycles/6 months/2x monthly/2on/2off schedule]....but it was chemo never the less and anything you think I can help you with...Please do not hesitate to ask....That's what we are all here for. To come together, and help in whatever way we can.

I will be forever grateful to all the wonderful people in here....They are the best! The kindness, warmth, and compassion in here in absolutely second to none.
take care there dear...annie

When life seems unfair ~~ remember
"Reach up as far as you can...and God will reach down the rest of the
way"
~annie~ =AE