first chemo done

Kristi -

Hi..  Actually, the report you got is relatively good news.  Being ER/PR positive is one of the rare times you want to see the word "positive" on a pathology report.

Basically, this means that your tumor was being "fed" by Estrogen (ER) and Progesterone (PR)- female hormones.   The reason that is "good" news is because there are drugs that can either limit the production of these hormones or block them on the tumor - and they have an excellent track record of limiting recurrence.   And your tumor appears to be HIGHLY ER/PR positive (88/85)- that is even better for the efficacy of those drugs !

As for Her2 - this is a an "oncogene" that resides within and on the tumor.  It is not a very nice guy in that it is a factor that makes a tumor very aggressive (a little like the gasoline you put on a fire).   However, as you were not "overexpressed", this means you did not have any or many of these guys, which is also relatively good news.   Her2 status is one of the factors that will determine the type of chemo your onc. puts you on.    That said, Her2 overexpression used to be an "automatic" bad thing, but with the development of Herceptin, a drug which blocks Her2, there is even a great course of treatment for those of us that are "overexpressed".   You won't need to worry about that in your case, though.

As for radiation, can I assume you had a lumpectomy ?  

Best of luck with your treatment course !   Let me know if any of the above is not clear.

Jill

P.S. Fivekids - I start my chemo regimen today !  Best of luck to you too. 

Jill,

Thank you so much for your information it is really really helpful.  I would love to here how your chemo goes,  I start on November 10th for 6 treatments 18 days apart.  I worked it so that I am having chemo on December 19th so I hope to be pretty good for Christmas.  My kids are 16 (girl) and 19 (boy), but they still like a Christmas.  Our family usually ski's over the holidays so I am hopeful my husband will take the kids up for a few days....I will watch this year.  I;m interested to hear how you do.  Hang in there I can only imagine what it will be like.  How long is your treatment.  After chemo I will do radiation for 5 weeks 5 days a week.  I had a mastectomy but there were two bad nodes that have them a bit worried.  Reconstruction after that....so I will go into about May.  Kristi  from San Diego Good Luck

Kristi -

Hi again.  Well, turns out my chemo got moved to Thursday because my doctor got so behind that by the time I would have been in treatment, the office would have closed on Wed.  So, I am not just one day into this.

Holding up relatively well so far.  Am very lethargic and tired.   They gave me so many medicines to ward off side effects that I feel like World War 3 is going on inside my body right now.   The Nuelasta shot this afternoon was not much fun - and I am hearing that will make my week end hell.    (That is the shot they give you to boost white cell counts and evidently, I have to take this darn thing within 24 hours of all my chemo treatments).    But... I just keep telling myself this is a small price to pay to make sure I can keep this little monster from coming back.   I also have radiation scheduled after chemo - 33 treatments over 6 weeks.  But, this was due to having a lumpectomy.   After that, it is completing the year of herceptin for which I will go in once every three weeks for an infusion.  However, most folks tell me that is a piece of cake in comparison to chemo !   Something to be grateful for !

In any case, best of luck with your treatments !  Let us know how the chemo goes.  Which regimen are they putting you on ?

Jill   

Starr -

You go, girl !   I am sure you have heard that enough.   But, honestly, I am finding that I need these reminders to keep fighting every once in a while.   Just when I started feeling sorry for myself, your post came in.    I took chemo for the first time last week and have been feeling like hell over the past three days.  

However, your note was a nice reminder as to why we are doing this in the first place.   I cannot even imagine going through this with two young babies at home (my "babies" are now 14 and 11).   I admire your courage and determination.  

That said, I am hoping you have someone at home that can help you out - and make sure you take care of yourself as much as possible.  I know, easier said than done with two toddlers in the house - I well remember those days.     You are going to need all the support you can get.

In the meantime, keep on fighting !    Would love to hear how you are doing with your treatment - and honestly, I am finding these boards a great way to "let down" once in a while. 

Jill

P.S. I am also a relatively "young" patient at 43 (great for my ego when the docs keep calling me that).  And yes, they are more likely to throw the book at you in terms of treatment due to that.  I found that out too !  Take care.

Carol, welcome and don't feel alone.  We have all been there, and been scared.  Keep reading, this is a great source of information and the gals are wonderful and helpful.  Love the pink gloves.  Keep on fighting, you can do this!

 Jill, they call me young at 51 too.  Feels good, and assures you that you have a lot of life left to live.  It's worth fighting for.  I hope the neulasta shot didn't give you too much trouble.  I have had three now, and they really haven't bothered me at all.  It's different for everyone.  

Hang in there girls,

Chris 

Kristi,  I think that you will find that the anticipation about the chemo is much worse than the infusion itself.  Mine also takes about 2 hours, and once you get started it isn't so bad.  It's the worrying and waiting that are hard.  

As for side effects, everyone seems to be a little bit different.  I get really tired and find that I can't do much in a day.  Everything just takes me a little longer.  On day 3 and 4 I usually have some stomach issues.  They will give you things for nausea, but I find I do get some diarrhea and have a stomach ache for a couple of days.  Don't worry too much about the side effects.  They will give you something for anything that comes up.  They don't want you sitting around suffering with things.  Just let the doctor know what is going on, and they'll take care of you.

Can't really advise much about the pain.  I had a lumpectomy and didn't have to take anything for very long.

Chris 

Hello, Ladies !

I did not get on last night due to a business dinner and this morning noticed this thread really picked up.   This seems like a great group to talk with.  Carol and Chris - Hi and welcome.  Let's get through this together.

Well..I have an update for your that I hope gives some encouragement to those "anticipating" chemo.  I too was a nervous wreck prior to chemo - and Kristi - am not too proud to tell you that my doc actually prescribed Xanax to "help me sleep" and it worked great !   The one thing I am hearing over and over again is that it is just as important to deal with your mental health through this as your physical health.

Anyway, after the chemo last Thurdsay, I was a little shaky the next day, but managed about a half day of work before going for the Neulasta shot.  The Neulasta shot is what really got to me (and yes, it is different for different people).   I had bone aches and incredible fatigue over the week end.   That said, I think I am about ready to nominate my husband for saint hood.  He took care of me all week end, and the kids were great too.  I managed to go into work for about a half day on Monday, which is about what I could stand and then I could feel myself turn a corner on Monday night.   It was almost as if I could feel the energy returning to my body.   By Tuesday, I was back to work full time.   I am a little more tired than normal (and still taking my Xanax before bed), but otherwise doing OK.   In fact, I am thinking about arranging a business trip to Europe in between treatment courses (with my onc.'s blessing!).     Anyway, the other thing I noticed was that the meds they gave me to ward off side effects - especially the ones for stomach stuff - really kicked in.   I could almost feel the nausea try to kick in and then the meds fight it off.   I had just a little diarrhea on Sunday, but other than that, staved off most of the digestive stuff. 

Now... for some other little tips I found that work for me:

1) Use the darn lidocaine cream on your port !   I had my port accessed just days after they put it in, and the cream worked right through the steri strips believe it or not.  I was dreading them sticking my port, and did not even feel it due to that cream.  Wonderful stuff.   Put it on an hour before your treatment with some saran wrap over it, and you are good to go. 

2) Despite my "young" age, for me Metamucil is a wonder drug.  I truly believe that taking a dose before bed (and yes, I started this before treatment), really kept my digestive system working better.    All it does is add fiber (a really good one), and the extra glass of water helps too.

3) Kristi - Like you, I cannot handle Vicoden or Percoset during the day.  I did take the Vicoden at night.  However, this drug throws me on my butt.   For me, ibuprofen is my choice of drug.  As Vicoden already has acetomeniphen, I was worried about too much of that drug in my system due to liver effects.   So, I switched to ibuprofen during the day (taking about 600 mgs - 3 pills) at a time.  That seemed to get me over the hump.   I have heard some ladies say that Aleve works well for them for the bone and muscle aches associated with Neulasta, but that drug (Naproxen) has never worked wellf or me for what ever reason.   But, you might want to give it a shot. 

Finally... a funny chemo story.   The drug they are giving me (Taxol/Herceptin), has to be given in a mixture of 80 proof alcohol and given over several hours.    I asked them if they were basically going to get me drunk and they said, (without blinking), "yes", and that in fact, I needed to make sure I had a right home, because "I would be over the legal limit" - AND I might experience some "hang over effects".    I couldn't believe it.  I was basically going to get my buzz on at 9 am (guess it is 5 o'clock some where).  Anyway, during the treatment, in the last hour, I could tell I was really toasted.   They kept asking me what my birthday was, I could not remember at times.  My husband was cracking up.   I pretty much zonked out that last hour and slept it off when I got home.   So, if we gotta go through this, at least we can make a party out of it !

Anyway, thought that might make you feel better.

Look forward to hearing from you ladies.  Keep the faith !

Jill

Cristl - Great to hear from you !    It sounds like you made a decision and are moving forward. 

I completely understand how terrifying this can be.   But, yes... we will ALL get through this and be better off in the long run.   The way I kind of see it, is that cancer wins if I let it define my life.  In being realistic, I know there are down times in treatment, and I don't like those any more than any one else does.  But, when I start to feel that way, I just remind myself to keep focused on the end game (and let others take care of me for a little while !).

As for the hair... I am almost hesitant to mention this for fear of setting you up for disappointment in case that it does not work out the way you want.  But, Taxol is one drug that may or may not cause your hair to fall out.   It will likely thin for sure, but whether you lose it all is quite variable person to person.  In fact, if you look at some of the other posts on Taxol, you will see some people mentioning their hair started growing back while on Taxol.  My oncologist confirmed this for me as well.

As for me, I can tell my scalp is itching a bit (and I am about 10 days post treatment).  So, I suspect some hair loss is on its way.    But, I have not shaved it yet in hopes that perhaps I might be one of the lucky ones that just has it thin !   However, if I do lose it, I won't like it, but will deal with it.  I know it is temporary.   (I know, does not make it much easier). 

Anyway, you have my e-mail address.  Please feel free to write or vent or yell or anything else you want to do.   We will get through this together !

Jill

Kristi -

Hi again.  I am sorry to hear about your incision problems.  Yikes! What a thing to have to deal with when preparing for chemo.  But, sounds like you got it under control.

By the way, I love your daughter's attitude !  Sounds like a very special young lady.  My daughter is 14 and she is terribly worried about me losing my hair (I think even worse than I am).   I will tell her about what your daughter said.  

Best of luck with the chemo.   Like you said, everybody reacts differently.   Just remember... this is TEMPORARY.    Please let us know how things are going for you - the good, bad and ugly.   We can learn a lot from each other both on good and bad days.  And, I personally am quite fine with folks venting when they need to.  That is one reason why we are here.   This treatment is not fun, but probably one of the most important things we will ever do in our lives. 

Also, thanks for your kind words.   In all honesty, I find I have found several people on this site that are inspirations.    I was telling Cristl in an e-mail, that one good thing we can all get out of this nightmare is a sense of giving back.    And wouldn't it be nice if something good came out of this ?!

That said, we all have enough on our plates for now.   Give when you want.. take when you want !  There is enough to go around. 

It is "weirdly wonderful" going through this with you too.  

Jill

Hi, Kristi -

Well, sitting here watching election returns.  I don't know how it was in San Diego, but in Ohio, as a major battle ground state, it has been unbelievably ferocious.   I was getting really sick of all the robo calls on my telephone.  Practically felt like I was on a first name basis with Rudy Guiliani given the number of times he called "on behalf of the Republican candiates".   And getting really tired of all the junk coming in my mail.   I don't think I have ever experienced an election quite like this one !  Other than that, it has been very beautiful here today.  Wonderful fall day !

As far as my hair goes -  My scalp has gone from itchy to a little sore.  So, I think I am real close now.  You know, I have heard from everyone that as much as you prepare, it really makes it "real" when the hair starts falling.   But, I have done all that I could.  I have bought some bandanas and hats.  I decided I was really not a "wig" person.   Not that I begrudge people that are.  It just was not me.   The funny thing is, the guys in my department at work (yes, I am their boss) swear they are going to shave their heads when my hair starts to fall out.   I told them that was not "necessary", but I find it really sweet.   I work with the best group of people in the world.

Next, let me say how incredibly impressed I am that you are already Christmas shopping !  You and I have a similar goal in that I want to keep the holidays as "normal' as possible for my family.  I hope I am not being too ambitious as one of my treatments is scheduled on Christmas Eve.  I have already talked the the doc, and we are going to try to advance that by a couple days because, like you, I have vacation planned starting Dec. 27.   Interestingly, I will be out your way in Southern California.  I have had these tickets like forever, so one of my goals is to be "up" enough to have a good time on this vacation or at least accompany my family.    So.. let's keep the faith and say we are going to attempt the vacation !   It is great to have a goal.   We might not be ourselves, but let's give it the good college try.    Where is it you go skiing ?    Sounds like fun !

Jill

Hi Jill,

My boss just sent over someone to give me a massage!  It was great. Due to my reconstuction I sat in a chair and leaned on her table but still fantastic.  I am so wound up about the port, chemo and how my body is going to react.  I think I am way too worked up and wish I could get more grounded.  Maybe once this all starts I will be better.  I am curious how the weekly doses will go. 

I am glad you sound like you are feeling good.  I am sorry about the hair "feeling".  I wonder though once it is gone that anticipation will be over with and then one thing behind you (us).

I have no idea if I will be a wig person but I think I will.  :-)  I have already bought two.  When I was little my mom wouldn't let anyone except my Dad see her without her wig.  Who knows but I feel like I could be following in her footsteps.  I sure wish she was here to go through this with  me. 

Well, I will be praying for us all and hoping everyone gets to go on a wonderful vacation.  I have one planned for March and my chemoo should be over in January.  I am hoping to be feeling good by then!

Good night!

Hello Jill and Cristl,

 Jill, I hope you are doing well.  Glad to hear your hair is hanging in there for one more day.....hope....I am right behind you.  I am really hoping that chemo for me will start Monday.  My incision has opened up because I think the plastic guy filled it to much last week.  I am seeing the plastic guy and the oncologist tomorrow to see if he will let me start chemo.  I actually want to get this going so that I can get it over with.  Also, if I start it now, it works better with what small plans I have; going skiing at Mammoth Mountain (Northern California) I hope after Christmas.   i know that I am not suppose to plan, but I have to a little, for my family.  Trying to keep things as regular as possible.

Cristl, I am so glad you got the massage.  What a great Boss.  I hope you are doing well!

 It is a beautiful day here in San Diego, I went out to the nursery today, I was hoping to get my winter garden in, but I know that I am jumping the gun, I just want these next few weeks/months to go fast, fast, fast.

Stay happy, as much as possible!  Kristi

OK, I am not sure if this is funny or if we all need to sit down and cry about it but..................................................................last night as I am preparing myself for bed, which can sometimes take a while, I was taking the bandage off and putting the antibiotic cream on, then as I am getting ready to put the gauze back on I notice an odd smell.  I look down and the tube of ointment I have just put on my open wound is Campho Phenique (cold sore medicine).  Oh my God!  I quickly get the Q tip out and am trying to get all of it off.  It does not sting because all my nerve to that part of my breast are gone, but I know if I had some it would be burning badly.  I yell for my husband and I manage to wipe off as much as I could.  I then try to wash it out with water.  It was quite insane.  My left arm is shaking because of the concern and I can't hold that hand still to wipe the stuff off.  We manage to get most of it off and I then put on the correct cream.  I was to tired to sit down and cry so I tried to just calm myself and decide that hopefully I will be able to look back on this as another "interesting" event of having breast cancer.

So today I will try to laugh! 

Cristl - good luck!  Jill - keep your spirits high

 Kristi

Chemo is a go for Monday, tomorrow I will set up my med's so that I don't things mixed up again.  And I start drinking more water.  I start 2 pills twice daily on Sun. Mon. and Tuesday. And more water on Sunday.  Infusion is 10:00am on Monday.  Kind of scared but ready, lets get this thing done.  I have all of the appointments scheduled, they hopefully will be OK pending my blood counts and reactions.  My sister cent another hat today.  The weather is so nice here it will be hard to wear them, they are all for cold weather.  I hope you are all doing well.

 Kristi

Jill remind me, which drugs are you taking.  I am taking all three, "TAC".

HI,

I've been reading your notes, and wonder if I could ask- what happens on a first visit to the radiation oncologist and the chemo doc? I see one tomorrow, and the other in a week. I'm 17 days post op radiacal mastectomy, and thankfully my doc put in my port during my surgery. I'm just nervous- hearing that my being er- means more aggressive chemo- whatever that means, seems it's all pretty aggressive to me. Any hints on first visits will be much appreciated!

Thanks,

Debbie