first chemo done

COMGRATS Cristl!!!!!!!!!!!!!!!!!! NO MORE CHEMO....man would i love to be there....still have 9 more weeks to go, then the surgery then the radiation.ugh.......10 toenails and 10 fingernails to lose..........that really does sound painful about the toenails though....ugh.....mine hurt a little but other then that, they're ok.....One I wish would fall off, had just started on that lamisil for a fungus infection in the big toe....stopped taking it when i got diagnosed......so it could fall off and I wouldn't miss it...........

I am praying you NEVER EVER have to have chemo again too darlin!

Luv, hugs and prayers

Deb

Hello Everyone - Just getting caught up here. 

Cruise - Thanks for indulging us with all your info.  I am not as familiar with your regimen.  In fact, I am going to go look it up.  The only drug in there that was familiar to me was Cytoxan, so I am thinking the other two are "real names" and not brand names.   As for hair... well, I am finding that this particular side effect is incredibly variable.  Some women get sore scalps, some don't.  Some women just have it fall out, others shed for days.   In my case, mine started falling out at about 12 days.  It started with a sore scalp and then I just started shedding like a dog.  The shedding nearly made me nuts.   To be honest, if I had to do it over, and know what I know now, I would have just shaved it when it started shedding.   Watching it go slowly and having hair all over the place was way worse for me.   However, there are other women who feel very differently and want keep every last strand they can for as long as they can.  It is a really personal choice and there is no right answer.   I have been without hair now since right around election day.   (I remember watching the returns come in while my scalp was sore).  And I can tell you now that even though I am tired of wearing hats, the anticipation of the hair loss is worse than living without hair - at least for me.   It has become just another "milestone" on the journey at this point.    As for finger and toe nails - well, I was one of the lucky ones.   Mine did not get affected one lick even though several on this board did.   Always did have strong as rock nails.   I did have the numb/tingly hands and feet, but it never went into the nail problem.   Goes to show, side effects are very "personal" as well - there is no predicting.   You might have some, none or all of the side effects possible.   In my case, each treatment seemed to bring a different side effect.  The last one decided to give me the pleasure of all of them and a few more for good measure.   I know, not exactly what you wanted to hear.   But, it goes to show, we all managed to get through them as unpleasant at times as it was (and still is for some).    So, hang in there.  We will be here when you need that extra shoulder to lean on. 

Belinda - Congrats on being done with A/C!  Wonderful news.   Got the big, bad one out of the way.

Cristl - Wow... done... I can hardly believe it.  Just seems like yesterday you were agonizing over this decision.  I remember it well.   You did it, lady !    Take care of those other things like the hands and feet and reconstruction - and get on with that great life of yours.  Just wonderful.

Deb - Very happy that they cannot find the lump.   Just keep motoring on with the taxol.  Glad you are tolerating it well so far. 

As for me - radiation number 2 was today.  Felt a little strange after it, but the treatment itself took all of 10 minutes and that included set up time.   So feeling pretty good about that.  

Take care ladies.  I am glad folks are doing well.

Jill

Since my last post on Jan 19th.

I would like to give a update-

Shortly after I told my story of being in the hospital because of low WBC....after I posted my telephone rang....My doctor was on the telephone to tell me that my blood work showed a bacteria. So I had to go back in the hospital.(At least I got to be home for one night)

I have spent almost a week in the hospital now....first for the low WBC....then having to go back and spend another 4 days.

The doctors needed to find out the origin of the bacteria. At one point they suspected bacterai around the heart so they did an Echogram....The results came back normal, but I was scared for a day and a half waiting for this whole process....Doc. said don't be so worried, but when they are looking at your heart it is scary.

Well the end result is I am being treated for a staph infection...Coagulase staph if I am correct on the spelling.

I was told this is not something I caught from anyone or can give....It was probably from the skin during a blood draw....The doctor is not coming out and saying, but me reading between the lines....I encountered this through a blood draw in the ER room from a few days before.

I now have to be on the mother of all antibiotics which is Vancomycin. I have been on it for the four days in the hospital, and then they put a PIC Line in me so now I will get an IV antibiotic at home every 12 hours.....OH boy! Fun, fun, fun!

Jill323- thanks for giving us an idea of the Radiation....Are you getting whole breast for 30 treatments?

I have another consultation on Feb 2. It will be interesting when I show up with the Pic line in me. Hopefully he doesn't send me straight home. I have already re-scheduled my appointment because of my days in the hospital. Aaah! I know I will call on Monday and see if they still want to meet with me. I just want to get this going as I will have the 30 treatments and I already have booking for camping in our RV in April....so I want to get going on this. (My last Chemo was Jan 7th)

To everyone else who is doing Chemo.....Hang in there it does go by quickly....you don't feel that way when you are in the middle of it, but once it is over and you are looking back you are thinking wow! that wasn't so long.  Even thou the last week hasn't been the best for me I still count myself as lucky.....Lucky that I have the opportunity to live a fuller life, without the opportunity of being able to have chemo or radiation then where would I be.

And remember "healing  begins in the mind"  I believe in this, even thou I have to remind myself of it lately.

Bless you all,

Denise

Hi everyone-

Cristl - congratulation on your final treatment!!  That is so awesome. May you never have to do this again. Once is enough for anyone!

Denise- I'm so sorry for all you have been thru. My lousy tiredness pales in comparisone. I hope the vanco works quickly for you!

as for me- I finished my last AC Jan 23. I start Taxol Feb 5. They started me on Trazadone for sleep. Last night I slept from 11 pm til 8 this morning. Am pretty hungover, and typing is awful- spellcheck is really getting a workout today. Neulasta shots now will be every 3 weeks instead of every 2 weeks, and I am grateful for that. Having EKG and Echo tomorrow to check for any changes. According to Doc I'm doing very well, and I feel so very sorry for those having a worse time than I am. I cannot imagine having to go thru anything worse.

Mentioning the hair loss- mine started coming out Christmas Eve- which was 12 days after first AC. my scalp was sore and I ran my fingers thru my hair, and everywhere the soreness was the hair fell out. I spent the whole night running my fingers thru - and the day after Christmas shaved it all. I still have some fuzzy areas, but could not stand having my hair come out so easily. I think the anticipation was worse than it coming out, although it was a very tearful time.

Hang in there everyone!! Time seems to go by so quickly. It seems like yesterday I was in tears over first AC.

Debbie

Debbie, so glad to hear the A/C is over, I'm sure you breathed a big sigh of relief, I know I did....so far the Taxol hasn't been that bad for me......hope it's that way for you too!

Denise.......I wish my hair would start growin back but with 9 more weekly Taxol treatments I doubt it's going to happen anytime soon....but I can't wait....I'm so tired of my head being cold! LOL....I don't like wearing the wig, I find it itchy and uncomfortable so only wear that when I go out......I now have a newfound appreciation for bald men.....I never buzzed mine.....had it cut short when it started falling out, I still have a strip going across the back of my head right above my neck, and a few strands on the side I don't sleep on, but that's bout it......But I cannot wait to have hair again......just to appear normal means so much!

Hugs

Deb

WHERE IS JILL???????  I guess I'm gonna have to PM her and leave a threatening message bout hunting her down again.....that woman, she just ups and disappears like  a sock in the dryer...!!!! LOL

hugs

Deb

Where is everyone????

 Update to my situation.  My second chemo was a bit concerning as the next day I started having heart palpitations and my pulse was racing.  My onco nurse said that I wasn't drinking enough water...I thought I was.  Hmmmm

Then a week later my heart jumped again and wasn't feeling well.  Then the next day it did it again and I called my onco nurses again and they said to come to office or go to the ER.  I met with my onco doctor and he put me in the hospital overnight for observation.  My EKG showed some irregularity overnight.  My bloodwork showed no heart attack or damage thank goodness. I also had an ECCOcardiogram to see if anything was different from the first one I had prior to chemo - I have been referred to a cardiologist.  My onco doctor thinks it was one of the chemo drugs that caused the irregularity and will be changing my chemo dose which will happen next week.  I was scared but now feel better knowing it was a side effect from the chemo drugs.  I am now on a low dose Blood Pressure med to help with keeping my BP low.

As for my hair...both my hubby and I got it buzzed off.  My hairdresser came to my house and we took pictures of the transition.  I wear a hat most of the time but also bought a really cute BOB wig that I wear and no one can tell any different since it is the same hair color as mine.  I try not to wear it too long as it does become itchy after a while.  But hey it works for me...

Take care ladies and hope to hear from you....

Cindy

Hi Jill:

 Thanks for communicating...not sure what FEC is...ignorance on my part.   My first and second session I was given Cytoxan, Epirubicin (ellence) and 5-FU.  The Epirubicin is the red one and the one that he is taking me off of for now. This is the one that caused the heart scare.

I think he mentioned another drug with a similar name to Cytoxan I will get the name on Thursday when I go in for #3.  He mentioned that he will be only given me 2 injections.  More on this later...

I will be meeting with a cardiologist on Friday and hopefully he may have more answers to help me understand my immediate concern.  My family history in the heart gene is not good and want to be sure I am good to go.

I have been prescribed 6 sessions of chemo (4 to go as of today) every 3 weeks and then 5 to 6 weeks of daily radiation after a month break.  This was a prevention type of therapy with me having Stage 2.  I will do anything to be sure it does what it needs to do with the exception of making me sicker with a heart condition of course.  I leave it up to the professionals and know that we are all in God's hands from here on.

Thanks for thinking of me and please keep in touch and let me know how you are doing with your radiation treatment.  I can't believe you are still working. I heard that radiation causes even more fatigue.  I wish that I could continue to work but my job is very stressful and demanding of more than 8 hours a day.  I have been very bored to say the least but know that I need to take care of me FIRST.

How is the weather in your area?  We have been socked with rain - much needed rain for sure.  I am a sun person and it has been hard not getting any vitamin D.  LOL

Take care...keep in touch.

Cindy

Hi again, Cindy !

Well... I am proud of myself because I did recall your regimen correctly.   If you ever get tired of wrting out or trying to explain to others what your treatment course is, just tell them FEC.   It is basically the first letter of each of your meds, and a particular order usually means a particular regimen.    I think I have seen forums here for those on the FEC regimen if you care to take a look.   (You will see some people talking about taking AC, others talking about being on TCH, some on TAC, etc.... all of these, like FEC, just represent different drug regimens).  

That said, I am finding that because everyone reacts so differently to chemo, I am not sure any particular regimen is really that different from any other in terms of side effects.    We all seem to suffer similar ones at times no matter which cocktail they give us ! 

 Please let us know how it goes with the cardiologist.  I am just really thankful that they are being so cautious with you.  That is certainly nothing to mess around with.

 As for me... I just finished radiation number 18 today.   There were two other ladies whose appointments bracket me and BOTH of them had their last treatment today.   Have to admit to being a little jealous.  One lady (I call her the loud lady), was so excited she went running through the hallway in her hospital gown saying "I'm done, I'm done".   The other lady told me that she finally considers herself to be a "survivor" now that she is finished with all the treatments.   Both of these ladies had done the chemo thing, but neither of them are Her2 positive like I am, so neither of them get to look forward to the year of herceptin.   So... guess I won't be running around the hallways saying "I'm done, I'm done" for a while, but that's OK.   As far as I am concerned, the herceptin thing is well worth it if it keeps this little monter from coming back.   Just one step at a time.  I will be a little excited when rads gets done anyway. 

The radiation is wiping me out a bit as I am finding myself more fatigued.   But, it is a different fatigue than chemo fatigue (at least for me).    I am also starting to get really red.   The doc told me today that those that have chemo tend to get redder than those that did not.  I did not know that.  But, I am doing relatively OK.   A little sore, and a little tired.  But, after chemo, I can handle it.

In regard to work... well, for me, work was more of a positive distraction than anything else.   I cannot say I was (or am) real effective, but at least I am occupied.   That said, I also work in a very demanding job.  About the only thing I have sacrificed is travel, which I used to do extensively.  However, my bosses and my employees have been very supportive through this, and that makes all the difference in the world.   I owe a lot of people for a lot of things. 

 But.... after getting the "lecture" from my doc last week about "over doing it" being a cause for exacerbating the fatigue, I finally got it through my thick skull to slow down a bit.   I am going to take a mini vacation next week.  I call  it my "do nothing" vacation.   Let's see how my type A personality deals with that, but it is my intention to do nothing.  I might even take naps in the afternoon (gasp!).    But, I figure it is a very good week to do it given I will be nearing the end of my radiation course.   

Anyway, thanks to you too for communicating.  I hope to hear how you are doing.

Jill

Hi guys,

 Just thought I write in and say HI.  I don't have any true words of wisdom except that from my experience, 5 out of 6 chemo's done, that they do not always get worse.  I think of all of mine the first 3 were the hardest.  I think that we learn to live a little better with all the side effects and we know what to expect emotionally.  I know that on the 8th day after chemo that the T of the TAC I am taking will put me in a spiral and I will cry all day.  It is not me, I know it is the drugs but it still happens.

Cindy, as Jill will a test to, this sight has brought us many friends and has helped us through times which were so bleak.  It has truly been a life saver for me.  

Also, I was raised in Marin so Vacaville is just around the corner, I have driven through it many a time.  I know that it has changed a ton since I have been there but it is nice to hear from another Californian even in these tough times.  Hope all is well.  Kristi

Hi Deb !

Sorry things are going so sucky for you.  Yes, it does appear the Taxol finally caught up - this is a sneaky drug.   Seems to zap the energy right out of you and plays hell with your emotions as well.    Sounds like you are getting the full Taxol effect at this point.

That said, just remember... you made it through the "red devil".  You can do this.   Five more, and then done hopefully forever!    Do check with your doc on on the medications that can particularly help with the mental aspect of this.  

I did take Xanax through my Taxol treatment, and while there were times that I was really down, I do think it had a big positive effect overall.   I am finding that Taxol really impacts a lot of people in the emotional realm - more than you might think.  

Now... hang in there.    Remember the job the chemo has already done for you in shrinking that tumor.   Five more... that's it.   It will be done before you know it !

Jill  

P.S. You also might want to ask your doc about maybe lowering the dosage.   I know some docs that have done that when it appeared the Taxol was starting to have cumulative effects.

Hi Jill .....and others who are peaking in....

I had my third chemo on Thursday...yeah only 3 more!!!!

My dr gave me new regimen - Cytoxan and new for me - Docetaxel.   So CD for short...LOL   

It appears to be less toxic although I have had diarrhea and stomach cramps today - day 3.  We shall see what happens this week.

Good news.....I met with the cardiologist and he performed another EKG and it was normal.  I mentioned that since I was in HORMONE HELL the past few years that it has happened before (heart palpitations)  He said that everyone has them and some feel them more than others.  There was no damage to my heart or any issues...thank goodness.  He does want to keep me on Coreg a mild BP Beta Blocker and see him in 6 weeks.

 I am still glad my onco dr switched IVs for me...I will feel better knowing my heart will be somewhat protected.

As for you my dear...please stay rested on your week of STAYCATION....you deserve it.   As I look at it...work will be waiting for us when we return.  uurrgghh.

Hugs and much love....stay well and strong!!!!

Cindy

Ladies -

Hello !   Well, the first night of my STAYCATION and so far I have managed to do nothing, despite the best efforts of my husband to plan stuff.  I actually had to tell him a couple times to "not plan my vacation".     This week will be interesting. 

Now... you will notice that I changed my picture.  I figured this is a journey and I am documenting it as such.   My hair is starting to come back in, and while grayer than I remember, it is a start.   Nice to not have a hat.. but, in all honesty, still wearing a hat here.   Too cold to do otherwise.  I will replace this picture a little later when I have even more hair !

As for me... had number 23 of 30 radiation treatments today and a bit of a scare.   The doctor said she was considering "stopping them" to take a break because my skin is getting very irritated.   She said it was starting to peel in one place.   Now... I only have 2 more before they start the "boost" in the tumor bed area.  The part that is really red is under my arm and below my breast - AND I really want to get this done.   I don't feel that bad, other than I am a little sore and tight.  So, I talked the doc into letting me have the next two before the boost.   She said "OK" with some conditions - 1) I have to use this new prescription cream three times a day, 2) I have to go braless (woo hoo!) - mainly for allowing air to get to the site, and 3) I have to use this soaking stuff and let it air dry three times a day (before putting on the new special cream).    Good thing I am on vacation this week.  I don't think work would appreciate all this topless and braless time. 

However, she said I would likely have to do this for a good two weeks after treatments end.  Have no idea what I will do starting next week.

In general, feeling a little sore and tired, but not too bad.   

Anyway, that is the update for now.   Hope to hear from you ladies soon.

Take care,

Jill

Good evening ladies.  I have been perusing these message boards for weeks looking for a comfortable place to share my mothers story.  Somewhere to ask questions that can only be answered by someone on this journey.  I have learned more from you all in two weeks than I have in two months of questioning doctors, nurses and the ever horrifying medical reads on the computer.  So, here I am.  My mother was diagnosed with IDC just after Christmas.  The tumor (grade 3 - stage 1) was small so she opted for a lumpectomy to be followed by radiation.  Pathology revealed that she was a triple positive with no node invasion. Now she will also need to have chemo therapy and has agreed to take part in a study that will involve 4 cycles of Cytoxan, Taxotere and Herceptin to be followed by the Herceptin for the remainder of the year.  First treatment is on 3-11 and I am trying to keep it together but i am so scared, I just love her so much and cant stand the thought of  her having to do this.  She means EVERYTHING to the family and I would love to anticipate her needs and be a little more prepared for what may come.  So on that note.....  If there is ANYTHING no matter how big or small that you all could suggest,  I am open to hear it. You are all beautiful, strong women just like mom.  I have told her about you all and hope that she will use your site in the months to come to help her stay positive and uplifted through her journey.  Thank you all for your stories and look forward to seeing positive updates soon.......

Hello mommy2dex !

Welcome to our little thread, even though I am sorry you have to be here at all.   You sound like an amazing daughter... and sometimes being the caregiver can be as difficult as being the one given the care.  So, make sure you look after yourself too!

Something in your note caught my eye about "staying positive".  It is hard sometimes, but that can be a huge enabler.   Just think of this as a journey, and like any journey there will be rough patches that you would like to forget.  But, believe it or not, a journey can also be a strenthening experience in many ways.  And while all of us would rather have not taken this journey to begin with, I can say that I have learned a lot both about myself and other women that I hope stay with me long after this is over. 

A couple of things...  first, how old is your Mom ?   Being triple positive is not such a bad thing.  It means that hormone therapy and herceptin should be very effective for her.   In other words, all the best stuff out there today theoretically should "work" for her.   So.. that is a good thing.  Also, it appears you caught this very early.   Also very good.  I ask her age because that also plays into some things.

As far as anticipating her needs... first, there is a forum on here called "before, during and after chemotherapy".  At the top of that forum is a listing (it has a little "pin" in the topic header) of all the things you should consider buying ahead of chemo.   Her doctor will also likely suggest some things.  Some important ones for me were in the area of oral health.  Make sure she gets all her dental work done prior to chemo.   Also, there were some mouthwashes (Biotene and/or Prevention) that worked really well to prevent mouth sores.   Swishing this stuff is pretty minor relative to getting the sores.  

Plan on her being very fatigued and somewhat emotional at times.  This stuff can play with your emotions a lot.   Just listen at those times and also don't be hurt if she just wants to be left alone sometimes.   It can be tiring living up to expectations that she might think you have of her.  

The regimen your mom is on is called TCH.   It is a good one relative to some others that can have more severe side effects.   Just remember, though, not to psyche yourself out about side effects.  Your Mom may have some, none or all of the side effects listed.  Everyone is a little different.    But, one thing you will find is that chemotherapy has come a long way in terms of managing side effects.  The drugs they have these days can make a real difference. 

In the meantime, take it one day, one treatment at at time.  Your Mom also sounds amazing.  Please let us know how she is doing, and don't be afraid at any time to ask any questions - even if they might seem silly.  I have to admit, I learned things on this journey, I never thought I would in a million years. 

Take care.

Jill

P.S. Cindy - Will get back to you too.  Got a roast in the oven to attend to right now !