What to Expect?

OregonSeaStar · November 2006

I'm new to this site . . . . and recently diagnosed. I've had a mastectomy and the possibility looms that I may need another soon. Because of family history - grandmother w/breast cancer, father w/colon cancer, mother and my oldest daughter w/ovarian cancer (all passed away now) - I've been tested for the BRCA1 & 2 genes. I'm waiting for the results; if positive, my oncologist says I'll need another mastectomy asap.

On Thursday, November 9, I'm having a port put in. Then on November 16 I'll begin chemotherapy - Adriamycin and Cytoxan. I'm told that I'll be given a anti-nausea pre-med (Aloxi?) and that it will help 'for a few days.' And I will receive a Neulasta shot the day after chemo.

All of this seriously scares me. Will I have nausea and vomiting after those few days? How long does it last? Is there anything I should ask for? What can I do to help myself?

Susan956 · November 2006

First off... I am so sorry for all of your loses... The beast does seem to bring much sorrow. But with recent new drugs and therapies for Breast Cancer there is true reasons for hope... and you will learn that there are many long term survivors here.

Ok, now for Chemo... I had four treatments of A/C two weeks apart. They were not as bad as I had imagined they would be. My onc gave me meds for nausea while I was getting my treatment and then sent me home with two types of pills. For me I had treatments on Tuesdays and felt the worst on Thursdays and Fridays. I was truly blessed and only vomitted one single time. I learned that on the Thurs's after treatment, I would keep water next to my bed and take both of the meds before I would move. I stayed in bed until about noon on those days. Other than the Thursdays & Fridays, I could eat fairly normally. My stomach felt yucky... but I was able to work (an office job) most other days (at least part days). On my off treatment weeks, I felt fairly normal except for getting tired easily. All in all it was tolerable.

By the way drink lots of water on treatment day... and eat what you feel like... If it's milk shakes that is fine. Don't try to force yourself to eat if you don't feel like it. I normally ate very little on my worst days... but on treatment days I ate like a pig... don't know why... but those days I was starved.

Oddly enough for me, loosing my hair was the hardest part of the Chemo.

As you go along let us know how you are doing... and use this board to ask specific questions. There are lots of Pros here and most any problem that you have someone here will have faced it.

Take Care... God Bless....

Susan

KathiM · November 2006

Just like susan, I had day 3 and 4 that were the toughest. But, then, day 5...like turning on a switch, I was FINE!!!! I ate alot of protein (turkey sandwiches) on that day.

I drink alot of water to this day. I had rectal cancer, followed by the breast cancer. I am, 1.5 years after diagnosis, No Evidence of Disease (closest they will come to cure before the 5-year mark).

It's hard not to be nervous, but, to be honest, some of my breast ca friends didn't have ANY bad reactions...one went back to work directly after the chemo...everyone is different.

Ginger, the candied kind, was my favorite tummy settler...

Good for you on the port...I had mine for the whole time, both cancers...just had it removed last month. It makes things much easier!

Be good to yourself. Realize you will be tired. Laugh every day.

Hugs, Kathi

karenack · November 2006

KathiM said:
Just like susan, I had day 3 and 4 that were the toughest. But, then, day 5...like turning on a switch, I was FINE!!!! I ate alot of protein (turkey sandwiches) on that day.

I drink alot of water to this day. I had rectal cancer, followed by the breast cancer. I am, 1.5 years after diagnosis, No Evidence of Disease (closest they will come to cure before the 5-year mark).

It's hard not to be nervous, but, to be honest, some of my breast ca friends didn't have ANY bad reactions...one went back to work directly after the chemo...everyone is different.

Ginger, the candied kind, was my favorite tummy settler...

Good for you on the port...I had mine for the whole time, both cancers...just had it removed last month. It makes things much easier!

Be good to yourself. Realize you will be tired. Laugh every day.

Hugs, Kathi

I too am sorry that you have to go through this. I am halfway through my chemo regimen of A/C. Like the others, I felt worse on days three and four. On the first treatment I battled nausea and vomiting so at the second treatment they added more medicine to my regimen. I had Aloxi, Decadron and Ativan in my IV during treatment and then they sent me home with Phenergan, Zofran and Emend. That did the trick. On the second treatment, my hemoglobin was down so they gave me a booster for that along with my usual Neulasta shot. The second treatment really kicked me in the butt. Only today (day 6 after treatment) have I felt more like myself. I would tire just walking across a room. I am going to try and work alittle today as my energy level allows. The most important thing that I can tell you is if you have any symptoms of nausea or vomiting call your doc immediately and they can give you other drugs to alleviate the symptoms. You shouldn't have to suffer. Good luck to you.

OregonSeaStar · November 2006

Thanks to all three of you - Susan, Kathi, and Karen. It's helpful to know what to expect and when, even though none of this sounds like anything I want to do. I must have been living in some sort of fantasy world to think my 'treatment' would end with the mastectomy. My doctors have been good about answering my questions so far, but I guess I just haven't even known the right questions to ask! I'm still pretty shocked and overwhelmed by it all. I had no symptoms, no lump that I could feel - one day everything was fine; then suddenly it wasn't and I was having my breast removed! Its going to take me some time to get used to this newly remodeled body.

My port is being put in tomorrow and everyone seems to feel this is the best thing to do right now.

Again, thanks to all three of you. Your experiences, advice and suggestions, and good wishes really help.
-shelley

kathydaly · November 2006

I am sorry I didn't respond to you sooner, it was partly because some of your things are different from mine. In my 1st treatment I only had adriamycin (and that happenned for 3x's). You helped me learn that A/C, is not an abbreviation for adriamycin, lol, because of the a and the c in it, ty. I didn't receive cytoxin until the last 6x's I had treatment along with metheltrexate and f______, any way CMF. This was 15 yrs. ago. It's nice to know you do forget some of the names of this stuff as time goes by. I was also worried I would be barfing my guts up, but that did not happen at all. They sent me home w/decadron but that did not quell the nausea I had, enough. I think I actually only threw-up once, but as Karen said call your oncologist and tell them right away if you're still nauseaous, because they can get you other stuff right away if you still feel bad. That was on my 1st night and then 3rd and 4th day too. My appettite began to go fairly quickly, and all I craved was water and O.J. Mostly, it was all very bearable to me, too, and i had 3 young children, the youngeast being only 7 mos. old at diagnosis. But,as treatment 3 loomed, we realized we had to get an au pair by then(for 6 mos.'s), and I don't discount how fortunate I was that we were able to do that and the part it played in making it bearable for me. My fatigue was profound and the worst part for me. However, I've heard of soooo many woman who worked through the whole time, God Bless them! Like Susan said, losing my hair was shocking to me in so much as the rapidity of it once it started. I wish I had cut it really short before hand and worn a ski-hat to bed so it would have all come out in that. I didn't have a port, I have good veins, so it was fine and/or they weren't doing it as frequently then. Today is the day you are having it put in, I'm sure it will be fine from what I've heard. So many of these drug names are new to me and that's all about advancement's, thank God!

My sister and I had the genetic testing done in '02. While there was no history of breast cancer in the family, we discovered many other types of cancers in past generations. The head of the genetic counseling center told us while we were not positive for BRAC1 or BRAC2 we would probably be positive for a BRAC3 OR BRAC4 yet to be discovered. As a result he strongly urged me to have my ovaries removed since they were doing nothing further for me any more and could only be a further site where the disease could crop up unbeknowst to me. So I did.

Shelley, I can't say how sorry I am for all your losses, particularly your own daughter to this awful disease called cancer. But because you have gotten through the most painful thing I can imagine, it tells me, without a doubt, you will have the courage to get through this as well. And SURVIVE!

Please keep us up to date and you will realize the miracle of this message board as I have. So very many smart, informed, funny and wise women here.

Laughing is so important, for any one but particularly for us, the disease hates to hear us laughing our way to health.

Prayers, love and ((((((((hugggs)))))))), 'til we hear from you again, Kathy

OregonSeaStar · November 2006

Thanks, Kathy, for your reply. Honestly, I can't imagine going through all this with young children to care for! Mine are grown and have families of their own. Now its just me and my
husband, 2 dogs and 2 cats . . . . . . and that's about all I can
handle!

I had my port put in this morning. Everything seemed to have
gone well, although I'm a little sore in the general area of the port. I think Tylenol is about all I'm going to need for that.

I think the biggest issue is that I'm still kind of in shock about
this whole thing. But, from what I've read here from you and others, although there may be some side effects (even severe at
times), most everything can be controlled, especially if I let my oncologist know about things right away. That, in itself, is very helpful - to know that I don't have to suffer without relief. I'm not very brave and my pain/suffering threshold has gotten lower and lower through the years. Knowing there is help/relief for the asking is immensely comforting.

Thanks again for your reply
-shelley

JUSTAWORD · November 2006

Well I waited to respond to your message cuz friday nov 10 was my first day of chemo. Just remember this eveyone is different, but i would like to share my experience with you.

I ate a very light breakfast. at 1030 (since i am on a trial study for anti nausea medicine the nurse injected my belly with the medicine. i was not told what it was) i had to wait 30 mins before they would give me the chemo treatment. first they injected the red stuff Adriamycin, very dangerous if its not propertly inserted into the vein, so make sure if you feel any thing hot or burning you say it immediately. my nurse said that when injecting this medicine intreveiously or thru an iv bag the nurse must be present and watching it at all times. she took approximatly 15 mins to complete. then it was about 1 hr for the cytoxan.

Lucky for me i sat with a group of 3 women who were very animated and fun and laughing and very informative. every one shared their experiences. Every one was very positive about the outcome. one was beautifuly bald, one had a great wig and one her hair had grown back about 3 inches. they were all beautiful in their own way. I left with a great attitude and felt extremely well, i was not given benydrl since i was on the study so i did not get sleeply in the least.

one thing i regret not listening to from the women was about eating. they all said they really didnt feel like eating their first time. but the nurse said nothing greasy or chile. i should have went with my first thought that i really wasnt hungry, but i joined my sister in a beef teriyki meal i only ate 1/2. but i think that was my demise.

got home feeling great she stood with me until 330pm. then around 420-430 some nausea, belching, light headache and some chills, i layed down for a bit trying to sleep or even just relax. at 610 felt the same thing again belching, chills, headache and nausea at 625 took prochlorperazine (subsitute for compazine) drank some water less than 20 sec later it was all too late. (i dont think that the pill even made it down my throat) just so you know if you vomit please either have a large wide mouth bucket or you are very very near a bathroom. this thing comes out like a firemans hose trying to put out a fire. you cant even hold it down. it was the worse thing ever. 4 times in a row. but i felt 100% better after that.

815 pm i started with belching, nausea, light headache and chills. at 829 pm called my doctor cuz i was starting to get concerned about the chills. he said see if i could ride the night out but if i vomit again call him and i could go to the emergency room for somthing a bit stronger. well needless to say 833pm it happened again 4 times in a row, once again i felt great. since i didnt feel the nausea i took the pill again for the first time(my doctor had said wait till i dont feel nausea and then try and take the pill again)this time it made it to my stomach.

1220 it started again, voimted 4 xs felt great and i slept until 4-430, then off and on thru the night. i got up at 730 this morning and alot better. i dont know what else is in store for me today or in the next 5 days like the ladies in the previous replies have said, but since this is fresh in my mind i thought i would share.

next time i am just gonna eat my jello that i made the night before. light and healthy. i hope that i did not scare you just wanted you to know that this was my reality, but i hope that any one reading this can learn and prevent some of the things that happened to me. if anything it may give you some good questions for your oncologist. may God Bless us all and prayers all the way around. Good luck on the 16th, i hope you ll do much better. stay healthy!

OregonSeaStar · November 2006

JUSTAWORD said:
Well I waited to respond to your message cuz friday nov 10 was my first day of chemo. Just remember this eveyone is different, but i would like to share my experience with you.

I ate a very light breakfast. at 1030 (since i am on a trial study for anti nausea medicine the nurse injected my belly with the medicine. i was not told what it was) i had to wait 30 mins before they would give me the chemo treatment. first they injected the red stuff Adriamycin, very dangerous if its not propertly inserted into the vein, so make sure if you feel any thing hot or burning you say it immediately. my nurse said that when injecting this medicine intreveiously or thru an iv bag the nurse must be present and watching it at all times. she took approximatly 15 mins to complete. then it was about 1 hr for the cytoxan.

Lucky for me i sat with a group of 3 women who were very animated and fun and laughing and very informative. every one shared their experiences. Every one was very positive about the outcome. one was beautifuly bald, one had a great wig and one her hair had grown back about 3 inches. they were all beautiful in their own way. I left with a great attitude and felt extremely well, i was not given benydrl since i was on the study so i did not get sleeply in the least.

one thing i regret not listening to from the women was about eating. they all said they really didnt feel like eating their first time. but the nurse said nothing greasy or chile. i should have went with my first thought that i really wasnt hungry, but i joined my sister in a beef teriyki meal i only ate 1/2. but i think that was my demise.

got home feeling great she stood with me until 330pm. then around 420-430 some nausea, belching, light headache and some chills, i layed down for a bit trying to sleep or even just relax. at 610 felt the same thing again belching, chills, headache and nausea at 625 took prochlorperazine (subsitute for compazine) drank some water less than 20 sec later it was all too late. (i dont think that the pill even made it down my throat) just so you know if you vomit please either have a large wide mouth bucket or you are very very near a bathroom. this thing comes out like a firemans hose trying to put out a fire. you cant even hold it down. it was the worse thing ever. 4 times in a row. but i felt 100% better after that.

815 pm i started with belching, nausea, light headache and chills. at 829 pm called my doctor cuz i was starting to get concerned about the chills. he said see if i could ride the night out but if i vomit again call him and i could go to the emergency room for somthing a bit stronger. well needless to say 833pm it happened again 4 times in a row, once again i felt great. since i didnt feel the nausea i took the pill again for the first time(my doctor had said wait till i dont feel nausea and then try and take the pill again)this time it made it to my stomach.

1220 it started again, voimted 4 xs felt great and i slept until 4-430, then off and on thru the night. i got up at 730 this morning and alot better. i dont know what else is in store for me today or in the next 5 days like the ladies in the previous replies have said, but since this is fresh in my mind i thought i would share.

next time i am just gonna eat my jello that i made the night before. light and healthy. i hope that i did not scare you just wanted you to know that this was my reality, but i hope that any one reading this can learn and prevent some of the things that happened to me. if anything it may give you some good questions for your oncologist. may God Bless us all and prayers all the way around. Good luck on the 16th, i hope you ll do much better. stay healthy!

Thank you so much for your message. It sounds like you had a very rough night; I really hope you feel better today! I really learned a lot from what you wrote: 1)Eat lightly and mild foods after chemo. 2)Keep a bucket close by! 3)Call the doctor if these symptoms go on for more than a few hours.

Its great that you have a sister to help you through this! Hopefully, she will be prepared next time to steer you to lighter, non-spicy foods if you are hungry! I also think its good that you were able to sit close to other women during treatment with
such positive attitudes. That goes a long way in keeping you upbeat and focussed on getting through the treatment and fighting hard for your health. What an inspiration to have these women close by during those first scary hours!

I really appreciate the fact that you took the time to respond, especially since you had such a dreadful night! Please keeping posting and let us know how you are doing.
-shelley

hounddog · November 2006

Hello I 'm Marilyn Stade. I had a new Breast cancer 3 years ago in February of 2003 . I had a mastectomy and I had a port put in on the 2nd of April . I was on Adrimycin and Cytoxin . I did start loosing my hair the day before Easter in April of 2003. I was Scared because I lost my hair. You will have nausea and vomiting but there is medication to help you with that. It is normal to be scared , angry , and Cry . Do not hold your feelings in . We all go through storms in our life the important thing is to keep your trust in God he will help you Through the storm John 6 talks about the storm . Talke one Day at a time and remember you are not alone in this. This month makes 17 years ago that I had my First breast cancer . I did not know what to expect I got out of the hospital the day before Thanksgiving. Always do your Arm exercises . What ever you do do not do reconstruction. If people don't like the way you look it is their problem .
I'm here for you . If you need some one here is my email. hounddog@pvtnetworks.net
Marilyn

OregonSeaStar · November 2006

hounddog said:
Hello I 'm Marilyn Stade. I had a new Breast cancer 3 years ago in February of 2003 . I had a mastectomy and I had a port put in on the 2nd of April . I was on Adrimycin and Cytoxin . I did start loosing my hair the day before Easter in April of 2003. I was Scared because I lost my hair. You will have nausea and vomiting but there is medication to help you with that. It is normal to be scared , angry , and Cry . Do not hold your feelings in . We all go through storms in our life the important thing is to keep your trust in God he will help you Through the storm John 6 talks about the storm . Talke one Day at a time and remember you are not alone in this. This month makes 17 years ago that I had my First breast cancer . I did not know what to expect I got out of the hospital the day before Thanksgiving. Always do your Arm exercises . What ever you do do not do reconstruction. If people don't like the way you look it is their problem .
I'm here for you . If you need some one here is my email. hounddog@pvtnetworks.net
Marilyn

Hi Marilyn - Thanks for your advice; I really appreciate it! It really sounds like you've been through it all! My first chemo is this coming Thursday . . . .and I guess I about as ready as I'll ever be. One thing that complicates the picture is that I live in a very rural area. My oncologist and the cancer center are 160 miles away (one way!). So chemo, dr. visits, labs, Nulasta shots are all a long, long drive from home. Oh well, we do what we gotta do!
-shelley

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