jill323

Hi, Barb ! 

Sounds like you got a plan.   And you are right, the anticipation is the worst part.

First, there is a list of things you should buy in front of chemo on the Chemo forum of this site.  It is toward the top and has a little "pin" in the topic.     But, the first thing you have to recognize is that everyone reacts differently - even if you are in the same regimen as someone else.   Cristl and I are on the same thing and different things are happening, for example.   Kristi and Cristl, though, both had sleep problems, etc.     So... while they give you a list of side effects, just be aware you may have some, all or none.   I know, just what you wanted to hear. 

However, one of the commonalities I have seen is the importance of staying hydrated.   Make sure you really hydrate yourself up front, and drink water thoughout your treatment.   While the center I go to has water (and soft drinks and coffee and juices) available to you, I take my own type that I like because it is the only thing that tastes good to me.   I also take my i-pod (because I hate daytime TV and want to block out the noise), and my favorite cozy blanket (even though the center has these too).   If your center does not offer snacks, I also recommend taking a light snack - I find myself eating peanut butter crackers and those little Teddy Grahm things because the center offers them.    Because I am a naturally hyper person, I also take some cross word puzzles and a book, but never seem to get very far with these (you will see why in a minute).

As far as how long it takes, that depends on the regimen.  I think you are on TAC.  Kristi -Isn't that the same one you are on ?    But, plan on being there for at least 2-3 hours.  By the time they get you hooked up, get in all the premeds and the like and then give you your meds, it would likely take that long.  The regimen I am on has to be given slowly, so I am usually there for about 5 hours.   That is why it is regimen dependent.   As far as "dozing" (which is what I think you were asking about), that is also dependent on your regimen.   The stuff they give me knocks me on my butt and I could not keep my eyes open if I wanted to.    However, other regimens make you hyper.    I personally don't know which way TAC takes you.   I am sure one of the other ladies can help you on that one.

As far as Xanax goes - I also take that one.   I find it really helps me sleep when I need it.   Hope it works as well for you as it does for me. 

Finally... wigs... well, my doctors office gave me a big old folder with LOTS of places I could get wigs.  Some of them even free and some of them supplemented by insurance.   I personally did not go that route.  Guess I am more of a "hat" person.   But, I bet if you asked at your doctor's office they will give you some literature on wigs.   AND, I know there are some other ladies on this site who went the wig route.    I will leave it to them to impart their wisdom to you !

Where are you located that it is snowing ?   We have had some flurries here, but luckily, not the big stuff.

Jill

Kristi -

Hooray !!!!!   I knew the old Kristi was in there somewhere.   Amazing what a little sleep will let you do.   Sounds like you might have hit on the right mix of meds for you to get you through this.    BTW, I loved the potato metaphor in your post.   Very philosophical of you... glad I am not the only one who does that.  

You sound so much better.  I am so glad.  Getting back to doing what you want to do can make a huge difference.  I also really liked point about your parents.   You are right, no matter how old you get or they get, they will still be your parents.    My Mom and Dad are divorced, and do NOT get along in the slightest.  But, both of them insisted on being there when I had my surgery, which at the time, really stressed me out - thinking about them even being in the same room.  But, to their credit, they put their differences aside and managed to "co-exist" for me.  That meant a lot to me and says a great deal about parental bonds.

As for me... the Vicoden whacked me out last night and I over slept this morning.  Almost felt hung over.   I will work from home this morning, but unfortunately, got called in for a big meeting this afternoon.   Not to worry... it is one that I really wanted to happen.   So, it is worth going in for.    Feeling a bit better today.   Biggest problem is the itchy scalp.   That is making me nuts. 

Well, take care ladies !   Barb and Debbie - Hope to hear from you later today !

Jill

Linda - Thanks... 

Our posts crossed.  Thanks a lot.

Jill

Good morning Ladies !

Wow... Sounds like yesterday was a really good day for everyone.  

Kristi - I am really relieved that you got the help you needed.   I am hoping you are snoring away right now.   I am only familiar with the Miralax via the colonoscopy experience and know that it can be (ahem) really effective.   Glad it is working for you.  Let us know how the sleeping thing goes.  

Also, your friend's point about the change in habit was a good one - one reason I am jealous of Cristl's week-end (you go, girl!).   Guess it pays to get back into a "routine" as quick as possible.  As for me, I do like a good glass of wine, and my doc says that as soon as I feel up to it, having a glass with dinner is just fine and in fact, recommended (maybe for the reasons you mention).  

I also see the invitation to the informal So. Cal group - Don't know how it is with that group, but I LOVE going to my support group on Monday nights.   It is sponsored by the Wellness Center here and completely free.  At first I was a little hesitant - thinking a bunch of ladies sitting around a room talking about cancer.   But, I was wrong.  It is great and I look forward to connecting with them.   We laugh and have a good time and are there for each other.   I have made connections there that will last a life time.   So....  if it is anything like that, I highly recommend it.   It might be just what you need right now.

Debbie - A good oncologist makes all the difference in the world.  Sounds like quite a contrast from the radiology oncologist.   It looks like you made some very good decisions.  Also, your husband sounds like an absolute angel.    That can make such a big difference.  I am just about ready to nominate mine for saint hood here as well.  I love all the "little things" you are doing to prepare youself.  Some ladies in my support group also went to a class in regard to make up when your hair has gone and loved it.  Also a good excuse to buy "dangly" earrrings ! Also, I am sure that scan will find not only a big brain, but a huge heart.   I will send you my address, only if you promise to do the same.  

As for me... trying the work thing again today.  I have a couple of meetings with some big wigs and a training - in which I am the trainer.   Kind of hard to blow that last one one off.   Think I need to work with my assistant on this scheduling thing.    Will probably come home and crash tonight.

Hope everyone is doing well today.

Jill

Barb - Hi and welcome.  I see you chose our little group for your first post.  Well, you couldn't have chosen a better group of ladies to support you through this.

I know this is very scary, annoying, maddening, frustrating... you name it.    That said, one of the things that struck me in our note was you trying to figure out how this could have happened.  Well, you will simply make yourself crazy if you continue down that path.   There is no way of knowing, and to continue to try to find a reason simply "blames the victim".   You did nothing wrong or anything to deserve this.  

The part about your boss makes me a little angry.   Everybody reacts differently to this treatment, and there is no pat answer.   There are some things you can do to maneuver through the working world.  But, your husband is right....  take care of you FIRST.   

I need to take off for work now.  Come back a little later and let us know how your scans went.  We can likely give you some tips on what is going to happen next, how to prepare, and most importantly, support you through this.    

Jill

Debbie -

Hi... This is one time having this computer keyboard frustrates me.   I wish I could support you better than what words on a screen can do.

You know, in reading your words, it reminded me of a time that I had post surgery when I was really low.  Just pissed off at my body and the world in general.   There was not a lot any one could do but let me wallow in it a bit.   Believe it or not, I was grateful for that time and those that just listened.   So, if you need that, let me know.   My ears and eyes still work pretty well (and I know where you have been).     I did eventually pull myself out of it.   (But, do NOT over do it with that arm - I know too many ladies that did and later regretted it.  I know that does not help you any, but your arm and strength WILL come back if you let it).  

As for the oncology appointment - yes, this first one will likely be long.   You need to be prepared to discuss options with your doc.   Remember that long list of questions ?  Get it out.   Make sure you get them answered to your satisfaction.   Also, don't be surprised if the next step for you is a long list of tests they will be sending you to baseline you in preparation for chemo (I know, not what you wanted to hear).   But, given all the health things you mention, probably not a bad idea. 

In the meantime, please let us know how it goes with the docs.   As far as chemo goes, not sure what your NP is saying in terms of it being "symptom free", but gotta admit the meds they have these days make it "manageable" - at least so far.    

I still feel like hell tonight (and getting a little concerned about going to work tomorrow), but I will survive.

Jill

s3434 -

Hi.  I know this is a lot.   My advice overall is to just take it one step at a time and don't rush into things.  Take your time to think things through and do what is right for you.  You had a lot in your note - some of which I can address by experience and some I cannot (I went the lumpectomy route).   Here are some specific tips:

1) First, if you like the relationship you have with your doc, that is what is more important than the hospital.    If you are affliliated with a doc, then she will "oversee" the testing from here on out. I have found the relationship with the doctor is critical.   So, if you have a good one that you like, go with it.  

2) Needle biopsies are only as good as what they take out.   It is possible that it could be hit or miss when getting the samples out.  The good news fo you is that they caught it and it sounds like very early !   

3) As far as second opinions go - this is almost never a bad thing.   But, in reading your note, it sounded like you were not quite sure what you would get from this as your mind was made up as to what you wanted given where you are mentally.   For me, the second opinion really came in handy after the surgery phase and when I entered the oncology phase of treatment.   However, in your case, your second doc may recommend a different approach to surgery you might not have thought of.   So, go ahead and get it to get more data on the table.  You have time and it won't "hurt". 

4) I cannot speak in regard to your stomach muscle question specific to this surgery. But, I can tell you I had a tummy tuck done about 6 years ago due to back issues I was having (believe it or not).  That was the smartest thing I ever did.    They tweaked my stomach muscles at that time and it was relatively easy to bounce back from.    I felt great afterwards. 

Finally, in regard to your "mental health" on this - just take it one step at a time.  Get as much data as you can on the table to make your decisions.  Get support when you need it (very important).  BUT... once you make a decision, don't look back.  Second guessing yourself will not help.    

Take care and let us know where you come out.   You can do this.  

Jill

Hello, Ladies -

Getting caught up with the posts today.   I am five days post treatment number 2 and hopeful this is my "turn the corner" day.    Still feeling fatigued and got this darn tingling in the hands/feet.  But, my appetite seems to have come back a bit, which I take as a good sign. 

2tzus - Way to take charge !   I hope the rashes and pain have started to clear up for you.   For me the darn Neulasta shot really drives a lot of back pain (almost hate that thing as much as the chemo).   I tried the Aleve/Claritin regimen recommended by some other ladies on another thread, and think that did make a difference for me this time around.   Back pain was still there, but not quite as bad.

joanne - I was thinking about our exchange last night.  You know, this darn hair thing is really hard.  I know it seems silly to think about 'hair" when there is so much other stuff to worry about.  But, in thinking about it, for me personally, the hair thing is finally what made this whole situation "real" and/or visible.   I can hide the other scars under my shirt, but when your hair falls out, it advertises a certain vulnerability and I am not happy about that.   When I started down this journey, I was in really good health.  Simply went in for my screening mammogram, and I felt really good.  Then, BAM... my world got turned upside down as I am sure yours did.  So.. in thinking about it, for me, the loss of hair means more than the aesthetic annoyance - rather it was a coming to grips with my whole situation.   MIght not be the same for you.  But, I guess sometimes hair is more than hair. 

Jessee - Your last post was simply beautiful.   It sounds like you have come a long way in a short time.  Yes, I was hesitant to mention the clinical depression thing for fear that it might freak some folks out.  But, in my support group, I will venture to say that more than 50% of the ladies there found themselves on anti-depressants through treatment.    It makes logicial sense if you think about it - clinical depression is caused by chemical imbalance, and they are chemical imbalancing us all over the place right now with these drugs.   For me, I have been able so far to get by with a little Xanax once in a while (which is technically anti-anxiety), which has helped me sleep.    I also laughed a bit about guys not getting this.   I told my husband when my hair started falling out that this was his chance to "mess around" - did he prefer blond or red head ?    Would like to say I thought of that on my own, but I borrowed that from someone on this site.  Luckily for me, he just laughed and said he would take the bald lady in front of him just fine. 

Colleen - Welcome.  Sounds like you are going through a lot.  I, myself, am not too familiar with CMF.  One of the things I am finding is that there seems to be a "coastal" thing going on in west vs. east coast.  There appear to be different preferred treatements by geography (not kidding).   Anyway, hopefully you will find someone that can speak to side effects of CMF for you here.   But, as a lot of the side effects are consistent across chemo regimens, I am sure there will be help here when you need it.  

Hope everyone is doing well today !

Jill

Linda -

Sounds like these ladies took good care of you on this.  You specifically mentioned "over the counter" type stuff, so I am not sure what I am going to mention is useful or not.

But, the Emend that Bluedasher mentioned is a very expensive prescription drug.  Even with my decent insurance, two capsules (which is all I need post treatment) runs me about $100.   However, for me, it is worth every penny as it has kept the vomiting/nausea at bay.   I mention it because if your insurance was like mine, two prescriptions of this stuff would eat up the remaining amount of your fund.

Jill

Linda -

Hi and welcome.  I just happened to be on line when your post came in.   I know this is a lot to take in.  If you can't tell, unique is quite an inspiration to us all.   So, you couldn't have found a better thread to initiate into.  

Unfortunately (of fortunately depending on how you look at it), a lot us are well versed these days on these acronyms.    Because I am in a chemo low today and really want to do something productive, I will take a crack at your acronym question.  

ER/PR - This stands for Estrogen and Progesterone Receptors.  If your tumor is highly ER and/or PR positive, it essentially means that female hormones were feeding the tumor.   In this case, there are medicines available to you that can block the hormones that the doc will put you on post treatment.   (If you see the acronym "AI" - that stands for Aromatase Inhibitor - which is one of these types of drugs that block the hormones and/or receptors). 

Her2 - Her2 is an "oncogene" that is a characteristic of certain tumor types (about 25% of IDC's).   It is not a very nice guy in that it is essentially like the gasoline that you put on a fire telling the tumor to "grow, grow, grow".    However, as unique mentions, there is a drug, herceptin,  that is available these days that blocks this oncogene and gives those with Her2 positive tumors great stats in terms of recurrence statistics. 

"Triple positive" - Means your tumor is positive for ER/PR and Her2

"Triple negative" - Means the tumor is negative for ER/PR and Her2.  This type is typically considered the most difficult to treat because a lot of the therapies available, such as AI's and herceptin won't work. 

DCIS/LCIS - Ductal Carcinoma In-Situ/Lobular Carcinoma In-Situ - These are cancer types (some consider pre-cancer) that are basically "contained" within the ducts or lobules of the breast.  This type of cancer does not "travel" in the body.  

 IDC/ILC - Infiltrating Ductal Carcinoma/Infiltrating Lobular Carcinoma - Indicates a tumor type that started in either the ducts or lobules of the breast and has managed to "break out".  This is the type that can "travel" to other places in the body.   IDC is the most common type.  

IBC - Inflammatory breast Cancer - This is a type of advanced breast cancer (about 5-10% are this type) that behaves a little differently than other types.  It usually has some reddening of the skin or pain associated with it.

Stage - This is determined by the size of the tumor, the number of lymph nodes involved and whether metasis is present.  Like unique says, stages 0, 1, and 2 are considered "early". 

Grade - A measure of how "aggressive" the tumor is.  They determine this by looking at it under a microscope and looking at how rapidly the cells are dividing, what type of cells they are and how far from "normal" the nuclei of the cell look.   Grade 1 is the "lowest" (or least aggressive) grade and Grade 3 is the "highest" (or most aggressive) grade.    

There are others, and I know this is a lot to take in.  But, I hope this was helpful.   Thanks for indulging me on my chemo low.  I now feel like I did something productive.  

Jill