first chemo done

Hello Ladies !

Well.... I am STILL in the hospital, but doing much better.  Got a story for the ages on this one.  

They have been monitoring my blood work pretty closely.  Yesterday, this young doc they have taking care of me got all freaked out because in my blood work, the ACG came back "elevated".    This evidently is the equivalent of a positive pregancy test.   Well.....  given they had given me all these mondo IV drugs and a CT scan, etc, etc. etc..... instant freak out occurs.  They are calling my oncologist and everyone.    I tell them to "chill".   Ain't no way I am preggers, even though I have been (ahem) quite "active".   Tubes were tied and destroyed years ago, and my damn period was trying to start.    Overnight really confirmed this as the flood gates opened and I bled all over the damn place.  Quite embarrassing.   But, they are now checking into the gyno angle as well as the diverticular angle.   

Anyway, yesterday started out kind of rough, but really started looking up as the day went on.   The Cipro/Flagyl IV regimen they were giving for the diverticulitis really made me sick (we are talking throw up kind of sick).    But, later things got a lot better.   They changed the antibiotic regimen and actually let me eat (Yippee!).  Today I got to take a shower and put on a fresh gown.  I am quite the fashion statement here, especially given the stylish gray "traction socks".    I think eating and getting to take a shower was better than any of the meds they gave me.

Next up is to sort out this diverticulitis/gyno thing via some tests.  But, I am really hoping to get out of here today.   I am still very sore, but much better than I was.   

I have enjoyed reading your reactions to my one year mark.  I am still happy to pass that milestone despite all the noise happening now - interesting that my oncologist is still involved on this.  They have been contacting her throughout this.    Thank you for all your kind words and thoughts.   I really do appreciate them.

Janet - To answer your question, after my last chemo treatment my family had a vacation planned in California.  It had been planned and paid for prior even to my diagnosis.  So, I was taking a leap of faith that I could even go.  Well... the taxol really affected my knees, making it very difficult to walk long distances.   The only way to salvage the vacation was to swallow my pride and get wheeled through the airport (and through the parks as well).   I found that a somewhat humbling experience as I had to recognize my own limitations at that point - something I had refused to do up to then.  But, I really did not want to disappoint my family.   So... did what I had to do.  That is what that meant. 

Talk to you ladies soon.

Jill

Hi everyone,

I know that Jill has sneaked out of the hospital, actually they discharged her, so hopefully she is resting DOING NOTHING at home.  She deserves it.  Hospitals are not that fun.  I know I'm going in tomorrow to have the other boob taken......in for two nights....then out on Thursday if all goes as planned.  Lets hope and pray that this is a very boring surgery.  Talk to all of you soon.  Thanks for your positive thoughts.  Kristi

Kristi....thinking of you and hoping all went as well as possible. 

OK,can I whine, I feel pretty terrible, not just from the mastectomy (8 nodes taken all cancer free) but from my intestines flaring up.  They hurt so bad at times that I am doubled over and can't even talk.  Any suggestions, should I go on a liquid diet?  Sorry I am just in such pain right now....Thanks Kristi

Kristi....thankful that the nodes were all cancer free. Hope you get some relief soon from your pain. Please take care and update when you are able to. 

Hi all !

Been quiet on the boards.   Hope all you ladies are doing OK.   I have heard from Kristi.  It appears she is on the mend and getting back to her onery self.  

I had herceptin number 11 this week.  I swear, it is getting harder and harder to bounce back from those with each subsequent treatment.   I slept for like 5 hours after getting home yesterday.  I feel like I am drunk when I get home.   Luckily, I feel fine the next day - so it is not like chemo.   But, I am beginning to think that I am like super sensitive to this stuff.  I don't hear any of the other ladies just getting herceptin say they feel like they got hit by a truck the day they get it.   But, still really grateful for that drug.   So.. I will put up with it.

The only other news is that my oncologist confirmed my hernia.   She felt around on my abdomen and said, "Oh.. there it is.. I feel it".  So... guess it is real.   Also explains why the diverticulitis attack was so nasty this time around.   The inflammation aggravated the hernia.   Unfortunately, the only way to take care of it is surgery - kind of like the only way to mend your clothes when they rip is to sew it up (at least that is how the doctor explained it).   I told the doc that I was very tired of doctors, and being poked and prodded.  She just laughed and said "well, then.. as long as you are not in terrible pain, let's just wait until you recover a bit from the diverticulitis."   I am not in terrible pain.  It just gets aggravating once in a while.  So.. I am going to wait until I get done with this big work project deliverable I have which is due on October 21.   After that, I will look into getting patched up.   Sigh... it's not one thing it's another.

The only other news is that she scheduled my next MUGA.   Although I don't relish being poked again, that test is worth it.  Better safe than sorry.    While herceptin is an important drug, it can also play hell with the heart.   So.. better to play it safe.

Anyway, that is the news that is news for me.   I hope everyone else is doing well.  I have been communicating behind the scenes with several of you.   Nice to see everyone getting on with their lives.   I have some thoughts on that one I am almost ready to assemble.    But, will save that for another post.

Take care.

Jill

Oh My!!  I've been looking at all the threads, got interested in this, and found you have been in touch with each other for nearly a year!!  I was reading intently as I'm starting chemo on Sept 3rd, dreading losing my hair (had the short haircut last week, not too unusual for me so it wasn't bad), am wondering why my dr doesn't think I need a port (Taxol and Cytoxan with Herceptin), am worried that I may not have the energy to care for my grandchild while on chemo.  I was a school secretary and decided to retire to care for my darling grandson (1 year on 9/28).  Surprise...breast cancer!!  I couldn't believe the timing....we all freaked out, as we thought about trying to find a loving daycare in a couple of months!  I insisted that I'll be able to do this, with my semi-retired husband's help. Herceptin every week and chemo/Herceptin every 3rd Friday a.m. for 12 weeks.  It sounds like you've all passed through this part of treatment but if you can offer tips (like putting all the look alike tubes away from the sink...you made me laugh with the merry mix-ups!), I would appreciate anything and everything.  You're all an inspiration to me!

Hello everyone !

Nice to see a little activity on ye olde thread.  Speaking of that....

Ronnie - Welcome !  I love it when new ladies chime in on the thread.  It is always great to hear some new perspectives and of course, catch up/commisserate with all the ladies that have become so dear to me over the year.    This was a quirky thread to begin with  - it was started by someone that never came back, is technically in the wrong place on the board, and seems to have attracted some very like minded women.  However, the number of views of this thread (over 16,000 now), tells me that there are a fair number of lurkers, which is just fine.  I would like to think we have helped lots of people who have followed this strange adventure.   I also like that the complete journey is documented (or is being documented).  It does read a bit like a story at this point. 

Anyway, in reading your post, I am also questioning why your doctor did not go the port route with you.   I am assuming since you are on herceptin, you will have to complete the year (after the weekly, technically they go from weekly to every 3 weeks until a year is up).   Typically, anything over 6 sticks they go for a port.  You will have way more than 6 sticks.   I know some women that have had some issues with their ports - but honestly, mine was a God send during this thing.   I still have it (I call it "the alien") because I am still getting herceptin.  I think you might want to ask your doctor about why he is not recommending this.   I know some other ladies that had vein problems after chemo because they did not go the port route.  Not saying that would be true in your case, but it never hurts to ask. 

As for hair... I lost mine about 14 days out after my first treatment.  If I had a do over, I would lose the hair more on my terms and probably shave it when it started shedding.  The shedding nearly made me crazy - and I got a bad case of folliculitis to boot.   But, everyone is a little different on that.   Some try to hang on to every last hair for as long as they can.   For me, the anxiety about losing it was gone once it was gone.  So, it was a bit of a relief.  And.. it is kind of an adventure when it comes back !  (more on that when I respond to Cristl). 

In terms of chemo and "activities" - like Cristl I also worked through chemo.  Won't lie to you - there were times it was hard.   My work place also allowed me some liberties in terms of treatment and recovery.  Typically I got chemo on a Wednesday and was still buzzing from the steroid on Thursday (so got a little work done).  By Friday I was crashed and off of work.  Recovered most of the week-end and slowly ramped my way back to full time over the next week.  Let's talk more when you get to it.   You will need to see what impacts hit you and how to schedule your meds to accommodate.  But, I will tell you if you have a young child in your care, make sure you get lots of hand sanitizer and use it liberally with both you and your grand son.   You will have a compromised immune system and will need to act diligently to stay healthy !

Shannon - Great hearing from you!  Glad to hear that your Mom is healing up nicely.  But... she isn't getting her heart checked ?    That is pretty much standard on herceptin.  So.. I would ask about that.   My next MUGA is scheduled for Sept. 2.   This will be my third since starting treatment.  My doc is pretty vigilant about those (I get them about once per quarter).   As for my stomach - well...  I don't like to complain really.  There are those that have it a lot worse.  I just find the stomach stuff aggravating.   But, I assume once I stop herceptin, the gastritis will diminish.  Will get the hernia fixed once I get my big project done.  That damn thing is eating me alive.  It is exciting work, but exhausting and pretty high pressured.   But, would rather have the challenge than not.   It makes me feel wanted, needed and well... alive !    As for swine flu... Gosh, I wish I had some words of wisdom.   My doc just keeps telling me to wash my hands frequently and keep them out of my face.   I wonder if those of us who have been getting treatment can get higher on the vaccination list ?  Does anyone know this ? 

Cristl - Wonderful to hear from you too !   I laughed at your hair comment because mine too has come in all curly/wavy.  I cannot do a THING with it - no matter what I try.  So... just wash it in the morning, comb it and it does its thing.  The weird thing is that I am getting tons of compliments on it.   When it fell out, it was straight and brown.  It came back salt/pepper and curly.   Kind of like seeing a new person every time I look in the mirror.   But... like you... really glad to have it back. 

Hope the rest of you are doing well !   Gotta go to work now.  

Jill

Jill, So good to hear from you!  I feel like a poodle my hair is so curly.  I am embarrassed to say I am still wearing a wig (7 months out) to work.  I have made some progress and ditched it out and about some so I am getting use to it.  I started with a personal trainer/nutritionist this week and went to the gym with my curls!  I have gained alot of weight and then with the short curly hair I just do not recognize myself.  Friday I am going for a "lesson" with my hairdresser to try to learn something to do with this.  I end up putting a headband on just to pull it back.  How many Herceptin's do you haev left?  I think you should be coming up on the end of it?  I started Nov 7th so I think I have 4-5 more.  I can't wait to get this darn port out and I like to blame some of this weight gain on the Herceptin.  BUT I am thankful for the Herceptin.

Ronnie, I also wanted to chime in on the port and second what Jill said.  I would ask about it again.  I can't imagine not having the port getting Herceptin for the full year + the chemo.  As much as I am ready for it to come out I think it probably saved my veins.  I am not sure of your status on lumpectomy/mastectomy but I had a sentinal node biopsy on my left arm during my bi-lateral mastecomy so I can't get "pricked" on my left arm so my right is all I have left so I think the port has been very necessary.  The other thing Jill reminded me of that I forgot is the steriod!  It really kept me awake.  I finally just learned I would be up most of that night.  For others it does the opposite.  People would talk about going home and going to sleep and there is no way I could do that.  I would get my Taxol/Herceptin on Thurs and would feel pretty good on Friday because of the steriod (although tired because I hadn't slept) but then Sat/Sun I would feel beat up a bit but than back on work on Monday.  I really didn't start feeling too bad  until my 7-8 treatment but I had mine weekly so that will be different.

Janet, Glad to hear you are almost done and can move forward!  My reconstruction was implants but first I had to do the expanders (which I hated!).  I now have the implants which I am getting use to.  I had this idea in my head that I was going to have these fabulous new breasts.  So I am getting use to the new me.

Take care all!

Cristl

Hi Kristi, Herceptin is given in most cases when you are HER+. Even though my tumor was small, everything else came into play, so I had to have chemo. Originally it was believed I "only" had DCIS in my left breast (Stage 0). I opted to do both breasts to be aggressive thinking I had dodged a bullet. However, during my bilateral, and even though the nodes were clear, they found a small piece of the cancer that had moved outside the milk ducts (if contained in milk ducts it is considered stage 0 DCIS). So because of my age (37 at the time) and the fact that I was HER2+ (meaning aggressive) chemo + herceptin was called for. I really don't have many side effects from the Herceptin. OR I guess I should say I don't feel bad. I do think it makes recovery from chemo slower - weight doesn't seem to come off, hair not growing as fast, nails still messed up but for me, I don't really feel too bad. The day of I am tired and have noticed a glass of wine that day doesn't help things! (I made that mistake a couple of times) but other than a runny nose it is ok. From what I understand before Herceptin HER2+ was a pretty bad deal. Now, with the medication, the outlook is much better. So I will take my medicine and like it. :-) Also, from what I understand, herceptin isn't initially given without chemo. Ok, that seems like a lot more information that you probably wanted. i will stop!

Hello ladies ! 

 Ronniekay -

Hi, again.  First, congratulations on your anniversary !  Thirty six years - wow.  Quite an accomplishment.   

You know, I read your post about the port stuff and scratched my head a bit.  The only thing I can think of is your onc. must have some bad experiences with ports.  To be clear, I do know some ladies that did too.  However, as far as "scarring" goes - I actually went and looked at my scar from the port.  It measures all of about an inch and a half long and has faded to the point where you can hardly see it - not exactly extensive "scarring".  I can take a picture and send it to you if you want so you can see what having a port looks like.  As far as having a "constant reminder" - well.. most of the time I don't even know it is there.  It gets stingy once in a while, and when I need to access it, I am glad it is there.  The only downside is that if it is not accessed frequently, I have to get it flushed every six weeks.  But, while I have been in treatment, that has not been necessary.  However, when I get it out, I will consider myself "moved on".  So, there is a bit of reminder, I guess.    I also only have one arm at my disposal for sticks due to node removal. 

As far as steroids go - I would be very surprised if you did not get a steroid with chemo.  It is to protect from severe allergic reaction and guard against nausea.   Most (actually, all) of the ladies I know got a steroid (usually decadron) with their chemo.   However, I do know some ladies that had it reduced because they were super sensitive to it.   It does tend to make you a little jumpy/antsy and the effect can take a couple days to wear off.    In addition to your chemo drugs, they will give you a lovely cocktail of other drugs along with it - only one is the steroid.   These meds are to ward off side effects and the like (mostly).    

In regard to flu vaccinations - most of the time they tell you to get one (swine flu or regular).  I actually did have my flu vaccination last year right in the middle of my chemo course.  Sometimes they will give it at the oncologist's office.  Make sure you ask  your doctor first, of course.     I also had the Neulasta shot for boosting white cell count.  I got it the day after chemo after each treatment.   I did not like that thing because it caused me bone pain, but it definitely was a necessary evil.  I do know a number of oncologists that prefer to see how your body reacts to chemo before going that route, however.   They will watch you very closely on that front.  Keep in mind that I had chemo during the fall/winter and was working around a lot of people. That could be why my doc deferred to the MO of giving me that shot automatically. 

 The MUGA scan is a heart scan that they give to check to make sure herceptin is not messing it up.  Herceptin has been shown to potentially be heart toxic for some people.   However, the good news is that it is reversible.   However, to make sure it is not messing with the heart, most docs order this scan (or an eco) on a certain frequency.  My doc orders one about every quarter.  I had one prior to chemo and once since being treated.  The once coming up next week will be my third.

Now... I threw a lot of information at you.   Just remember, the anxiety of waiting for the first treatment can be worse than the treatment itself.  Once you get one done, you will see how your body reacts - and most likely find out you can do it.    And... do keep hydrated !  It is an important part of your treatment.

Janet - Hi !  Do good to hear from you.  I can hardly believe you are almost done with the treatment.   Wow.  Seems like just yesterday you were starting.    Where does the time go?  

In regard to feeling like a "jelly fish" - we are conditioned people to always "go, go go".   This is one time you need to take care of yourself.   I am familiar with the DIEP surgery, as I had a friend that went that route.  It is an extensive surgery (the 8-10 hours is no lie).    It takes so long and is "cutting edge" due to the microvascular nature of it.   So... you have every right in the world to take care of you.      I look foward to hearing how it goes.

There is a little festival in town this week, so I am off to that.  Hope everyone has a good night.

 Jill

RONNIEKAY:  I'll be thinking and praying for you.  Remember to listen to your body, sometimes you'll be awake, sometimes you'll need to sleep.  Also, I found that be being proactive instead of reactive helped to mitigate against side effects.  Staying hydrated and nibbling on saltines helped keep the nausea at bay......using a baking soda and water as a mouth rinse helped to minimize mouth sores. Also, I kept a journal of side effects, that way, when I talked to the doctor I didn't forget anything and I also knew what and when to expect side effects to occur on subsequent treatments.  

You'll get through this and be a stronger, healthier women.    

Janet

I DID IT!  I just read your posts...11:45 pm.  I may get to bed a bit earlier but I need to let you know that your advice must have been sent via telepathy to me at treatment this a.m.!  I can't tell you how glad I am that the first day is done.  Blood draw, xray, ekg, radiation checkup, meeting with oncologist and her facilitators..Schedule set for port on next Friday before herceptin!!!  I have to say it all went amazingly well.  The nurse said my veins were nice and springy (thanks to H20 tips, gals), tylenol, decadron and zofran (iv) and then herceptin, which they gave over 90 min to avoid SEs, had none. That will change to 30 min from now on!  Then taxotere for 90 min and cytoxan for 60.  The only odd thing was with the taxotere I felt a weird warm, stingy sensation at the site of my lumpectomy.  The nurse said it's very common...a sign that it's going where it needs to go   Came home at 5, took meds and a nap, ate a salmon dinner at 7:30, family came to visit, more meds at 10 and here to the helpful site!  Thank you for the words of encouragment and wisdom!  I know I'm in the honeymoon period but I'm wishing for the best...with all sorts of help from you!  OMG...it sounds like you've had such an interesting career Jill!  I expected something incredible, and this explains the projects you've had on your plate...I don't know how you've done it all!  To be in on the cutting edge of medicine is amazing...one of my science teacher friends that went through this in February was actually a Chemical Engineer before deciding to teach.  She was so valuable to me...as all of this drug stuff made so much more sense to her (I'm more the Language Arts type person!).  You're right about becoming an expert through experience...I start explaining things like HER2 to people and they glaze over!  Thank you all for helping to advocate for myself. There really haven't been many times (other than my dismal experience at the first oncology office) that I have felt I needed to step up to the plate, but I now ask more questions, and am really feeling confident that I know what, why, & when!  I started my journal Janet....all the meds and the tingling boob. I have somewhat of a steel trap mind (I could remember the first names of the bulk of students at the high school I worked at...2400 students!), but was finding that some things afiliated with this disease were slipping by me!  Great advice.  Once again...you're all a blessing to me!  Sleep tight, I'll hope for no nausea in the night...and pray that you are all feeling well

Hi Everyone,

  Just thought I'd chime in to say CHEMO IS DONE!  Haawho!!!  Let the hair growing begin!   Now it's four weeks until surgery than recovery, then it's on with my life.  Thanks to all of you for being my teachers, mentors and my friends.  You really got me through a very difficult time. 

Janet

Hello Ladies !

Got to tell you about something that happened last night, because I found it very touching.  This past week I was in eastern Washington state - for business working on that crazy project I was telling you about.   It had been an exhausting (but successful ! trip).   I was making my way back home yesterday, and let me tell you, really no easy way to get from eastern Washington to Cincinnati.

I was a little cranky due to all the air travel - never mind the having to travel on 9/11.   Tired and cranky does not usually make a good combination.    Anyway, when I travel via air, I always wear a lymphedema sleeve.  The studies are mixed as to whether or not air travel causes lymphedema, but I figure better safe than sorry.   I also wear a little silver bracelet on my right arm (from which I had nodes removed).  It has a very tiny pink breast cancer ribbon engraved on it.  I wear this mainly to remind myself not to get sticks or blood pressure on that side.   

So here I was boarding the jet in Salt Lake City to come back to Cincinnati in all my crankiness.  This plane is REALLY full as most of them are these days.  I am standing behind this guy  who is struggling to find a place for his carry on, but taking his own sweet time doing it which is irritating me that much further.   When.... all of a sudden, I feel a gentle squeeze on my right hand.   I look over to see who is squeezing my hand and it is this lady who smiles at me sweetly and holds up her arm to show me her own lymphedema sleeve.

You know, in that instant all my crankiness just dissolved when I smiled back at her.  Turns out she is a seven year survivor.  I told her I was one year out.  She squeezed my hand again, but not a lot needed to be said.  And by this time, the annoying guy finally figured out his carry on situation.  So I congratulated my "sister" and left to take my seat. 

But, I thought isn't it odd how this damn disease can bring total strangers together.  There was an instant recognition on both of our parts as to the shared journey - and I found that oddly comforting.  Even though this lady was a total unknown to me, there was a part of me that felt like we knew each other.  She certainly put the causes of my crankiness into the background.   Instant attitude adjustment.  

Anyway, I thought you might find that interesting.  I know I was touched by it !

Ronniekay - You out there any where ?  How you doing ?

Janet - We have talked, but you know I am thrilled you are done with chemo !  Woo-hoo!!  AND... I think you still owe us a picture ! 

Jill