Starting Chemo October 2009

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  • one-L
    one-L Member Posts: 1,110
    edited October 2009

    Hello Ladies,

    I found out today I will start my chemo sometime this month.  I will do the T/C regiment every 3 weeks x 4.  I have been ordering scarves like crazy, I have decided I will not  wear a wig. 

    This has been a very hard decision for me.  My Oncotype DX was 25 so here I am.

    I haven't read all of this post yet, but I will  get to it. 

    I will talk to the surgeon on Thursday and find out when the port will be installed.  So much to do and so little time.

    Juannelle

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  • Piffken
    Piffken Member Posts: 91
    edited October 2009

    Hi MaryNY,

    Here is a quick update. After meeting with the new Oncologist, my regimen has changed. I will have 4 treatments of AC every 2 weeks, followed by 4 treatments of Taxotere every 3 weeks. My port will be put in on Monday, I will start chemo on Thursday of next week (Oct. 22). Tomorrow I will get my hair cut t6o shoulder length (for starters - it means about 6 inches will come off) and then I will get it cut short short, so I don't have to go through the heartache of seeing it come out long.

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    thank you ladies that helped a lot il check with onc when i go to my chemo class :::::::  i know ill be on hormone tablets soon and rads as well

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Welcome Juanelle, I had an Oncotype score of 18 but with a positive node. Saw my fourth onc yesterday and decided on chemo. I know how hard it can be to make that decision. Did they mention the TAILORx trial to you, I think you would be a candidate for that.

    Thanks Piffken, I updated the list with your info. It's good to finally have a start date, isn't it?

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear MaryNY,

    Add me to your first post, pretty please.... I am getting AC-->T +/-B (ECOG 5103)

    Love,

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009
    Dear MaryNY,
    Add me to your first post, pretty please.... I started on September 28 and am getting DD AC --> 12T +/-B via clinical trial ECOG 5103.
    Love,
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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Hi Onty: What date did you start chemo? SORRY, got the date now.

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    hi piffken

                  i start my chemo on 23 rd  4 x AC I dont know if ill be doing Taxol i carnt remember hearing that  the hair thing is the scariest for me im a hairdresser people say oh that ok you can get lots of wigs and stuff but no not really and my feellings are still the same i love my hair my boobs and hair are the things that make  me feel feminine my hair is a short bob and its curly u nknow that wild look love it im thinking of cutting it really short then when it starts to fall out a buzz all over but then if i dont like my hair short ive got more missery on top of my missery  oh to many discions     joanne

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Mary, thanks for updating my stats.

    Dear Joanne, I hear you about the hair. Mine is still hanging on though on day 16. Only some pubes shedding in my panties and a few head hair strands on pillow.

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009
    Hi Joanne: I think most of us feel similarly about hair loss. Have you heard of Look Good Feel Better? I went to two of their events and found them enormously helpful. I know many others on these boards have attended too and really enjoyed the experience. Click on the link above for the Australian site and then browse the workshops to see if there's one near you.
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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    can you still have  a spray tan spray tan when doing chemo  i know that sounds silly but having a bit of colour makes me feel better    joanne

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  • joanneasiata
    joanneasiata Member Posts: 719
    edited October 2009

    hi maryny i have booked in to one of the classes its 1st dec looking foward to it  ill just try to have fun with the whole hair thing    joanne

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  • JenXX
    JenXX Member Posts: 32
    edited October 2009

    Had a really tough 1st week.  I am in the 2% of people that have a bad reaction to the taxotere.  My doc is going to lower the dose.  If I get that sick again, I will stop the chemo.  I just heard that a friend did chemo for breast cancer last year and a biopsy this week show it just came back - so why do we go through all the misery of chemo?  I think surgery is preferable, but that's my  opinion.

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  • Suzy1979
    Suzy1979 Member Posts: 16
    edited October 2009

    I start chemo this coming Monday. I have heard that not everyone will lose their hair, is this correct? I am also going to be on Herceptin, can anyone share something about Herceptin?  I have read some scary things.  What have been your experiences with Herceptin?

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    Thanks for the Welcome Jean151,

    Today, I'm going to the "Look Good, Feel Better" class put on by ACS.  This evening I'm going to a "Hypnosis Seminar" Maybe I will finally kick smoking in the butt. i had always thought if I was to get cancer it would have been lung. I've smoked since I was 14 years old, now I'm 56. My Doctor said I'm in "Good Health" I said "Yeah right, except for breast cancer" But, I should be able to withstand the TOXIC drugs because my health otherwise is relatively good. I'm still scared of the Adriamycin.  E'wwwwwww>scary.

    Tomorrow I go have my "Port" placement.  Then Monday my onc scheduled me for a chemo class, he feels me & my husband both need it!  Then the 28th I will be ready to start, therefore finish!!  :-) 

    Like Valerie said live in the moment, I have a lot more after the chemo, but I shall not think about it. There is enough every day to with, I'm like an emotional roll-a-coaster!!

    My onc's RN said that my Doc won't prescribe  EMEND, that I didn't need anything that strong for the regimens I'm on (TX=Cytoxan,Fluorouracil,Adriamycin) (sounds ruff to me!) and )I have read such good stuff about it. I'd sent for the info packet and received it. He didn't even raise an eyebrow when I mentioned and tried to discuss the EMEND.

    I know one thing I love all the RN's, they are sweet and helpful patient and kind hearted, but the DR'S themselves, just don't seem to give a rat's a@@ if you ask me. I'm soooo frigging frustrated with the Dr's!!

    Anyways sister I have to close for now, I'll see you soon and on the flip-side to November. I thank all of you for you help with understanding this awful disease we are battling together.

    (((((HUGS)))))

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  • valeriekd
    valeriekd Member Posts: 287
    edited October 2009

    Hi JoanneAsiaTA- Glad u got your regimen -always nice to have something tohold onto. I am only doing Taxatere plusCytoxan the info i got was the rsult was the same as ac but less toxic to heart and lungs - maybe u could ask? I am doing evry 3 weeks b/c I waned to work the 2nd 2 weeks after chemo- we'll see how THAT works- don't feel too bad. Onc said I'd lose hair around day 18 - weird how its all percolating in there. Good luck to all - we r brave! Love, Valerie

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  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    So, here I sit in the infusion room.  Adriamycin has been pushed, and now I'm getting the cytoxan.  I've been here for an hour and a half already.  Probably another hour and a half or so to go.  No problems so far, knock on wood!

    Hope y'all are having a good day!

    Peace... 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Day 18 sounds about right. Funny how I had heard that from day 5 (five yes!) I should expect hairloss. But my own experience jives with the 18. Today is Day 17 for me. I saw pubes in my panties for last 2 days but not any other signs. But today I am seeing tufts coming from the head. Time to bring out the shaver I think.....

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  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    Cytoxan done, on to the taxotere!!  about an hour to go.  Boy, that pharmacist was freaked out - she's a 4th year student, and my friend who is here with me and I were throwing jokes at her, she didn't know what to say!  Poor thing... I guess I'm supposed to be more morose.  Sorry, not today!  I'm trying to come at this with a good attitude.

    Peace... 

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Hi Shelby: nice to get the blow-by-blow account from you. Were you apprehensive going in this morning? Did they spend long doing blood tests, etc. before they hooked you up. You will probably be almost finished by the this time. Do you need to bring someone with you every time you go, or is it just the first time in case they give you something sleep-inducing?

    Would like to know how long the dose dense AC infusion usually takes. I'm supposed to be starting that in two weeks.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Mary,

    Plan to spend at least 5 hrs for the first day of chemo. Here is how things go for my infusions:

    1. Vitals and blood count check thru' finger prick 10-15 mins

    2. Oncologist exam/consult 10-15 mins

    3. Hook-up, flush + pre meds + flush 75-90 mins

    4. Adriamycin + flush 60-75 mins

    5. Cytoxan + flush 45-75 mins

    The first day will be longest, second shorter and 3rd and 4th shortest.

    First time go with someone. After that check with the nurse...

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Thanks Onty. What is "flush"? Are the pre-meds for AC fairly standard? What ones are you on? Do you have to take anything the day before? Do they give the infusion more slowly the first day? I read somewhere that when Adriamycin is infused more slowly, it's less likely to cause cardiac problems. I asked the onc about this and she dismissed the idea.

    How did you feel after you first Tx? Were you sort of OK that day and the SEs hit later? Just wondering if I'll be OK to go drive back the next day on my own for the shot of Neupogen/Neulasta (not sure which drug onc said). 

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hi Ladies!

    Sorry I haven't posted in awhile (OK, one day), but I'm back!  I've been feeling pretty good the last few days. 

    My hair is still looking good.  This Day 10.  Shouldn't it be acting crazy yet?  I'm not complaining, for sure!

    Had my first fill at the plastic surgeon today.  I think its funny that they use an actual stud finder to locate the metal ring on the expander.  Only filled the right side today (that is the side that had to be completely drained in the 2nd surgery).  So I now have 200ccs on the left and 160ccs on right.  They still look weird, but PS says they look great.

    Got the results of yesterday's  blood work this morning.  Evidently, Neulasta REALLY works!  Before chemo, my WBC was 6.  Current results say 37!!!  PS called my onc just make sure.  Yep, Neulasta does that.  I'm not sick.

    Maybe Neulasta will make my hair stay on my head. HAHA.  I am currently eating like a large sow.  Any weight loss of last week is being undone.  I may have to hit the gym today.

    Hope you all have a great day!

    Laura

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Mary,

    Before starting to use the port and between medicines they push small bagfuls of saline water through the port to clean ("flush") and to minimize the effect of different drugs interacting with each other in a small space.

    I don't know if the pre-meds are standard across chemo centers but I don't think so. My chemo center uses Emend, Aloxi and Decadron. I don't have to take anything the day before but I know some women do. They may give you a prescription for lidocaine/prilocaine to apply on the port 30 minutes before and cover with glad wrap plastic sheet. It will numb the skin over the port for the needle push so don't forget to do that. If not, they will probably spray it before pushing the needle.

    The first time they infuse any drug into you, they do it slowly to watch for reactions or other effects. Second dose of the same drug is faster and the future doses are all at the one fastest rate. I only had problems with Cytoxan - sinus pressure - even when they slowed it down to 60 minutes.

    Other than red color in pee and bloating right away I had no side effects on day 1. Next morning is when it all started.

    I was ok to drive back on my own but DH is driving me around. If you are going back for a single shot, then thats Neulasta. If you are getting daily shots then that is Neupogen.

    I am losing my hair rapidly starting today, day 17.

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  • txstardust
    txstardust Member Posts: 599
    edited October 2009

    Mary,  I got to the infusion center at 8:45, waited a few minutes, then was called back for labs.  They accessed my port and drew some blood, then I walked back to the infusion room.  Waited for lab results to come back, they gave me pre-meds which only took about 20-30 minutes.  Then Adriamycin, they gave that IV push it took 15 minutes.  Flushed the line with saline, then Cytoxan, that was about 30 minutes.  Flush again with saline, then Taxotere for one hour.  Altogether, I was there for 3 hours and 15 minutes.  I did not see my onc, but I just saw him a week ago.  The pharmacist came and gave me the "scare" talk about all of the possible side effects while I was getting infused.  Nothing I hadn't heard about already.

    I still feel perfectly fine.  No problems during infusion, and I went to the grocery store afterwards.  Just got home, and had some lentil soup for lunch.  Now I just feel like I'm waiting for the "other shoe" to drop.  Hopefully I won't regret the soup.  Got my fingers crossed!!  The nurse said I'd probably be awake tonight due to the decadron.  Hope I can get SOME sleep - I didn't sleep very well last night from being nervous.  Not to mention the argument I had with my fiance (I think he was nervous too!).

    Peace,

    Shelby 

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Shelby, I hope your other shoe doesn't drop.  I remember that feeling, and it was SOOOO nice to wake up the next day and still feel human.  Hope you have the same luck.

    Laura, I've had two doses of Neulasta, and if you could see my hair you'd know there is no connection between it and hair loss.  But at least it did the trick in your blood!  :)

    Suzy 1979, I am taking Herceptin.  I've already had four doses.  I've had two with my chemo drug and two on my off weeks.  What I can tell you so far is that it doesn't make me feel bad AT ALL.  And according to my docs/nurses is that way for most people that take it.  It is true that the potential side effects are serious...heart, lung damage, allergic reaction.  To offset that, they didn't offer to give me the A/C regimen (since it can be hard on your heart as well) they will monitor my heart, and the first infusion is given very slowly so if they have to stop and send in some Benadryl they can.  Interestingly, they usually then resume the Herceptin afterward and most people don't have any additional reaction.  Still, most people that take Herceptin have no reaction..........let's hope you are one.

    And Onty........you know what was missing from your schedule that is a huge part of mine?  WAITING!  Oh my gosh, if I thought I could get blood drawn in fifteen minutes I'd be a happy woman.  I get blood drawn in fifteen minutes, after waiting 1/2 hour.  Same with the doctor visit....etc, etc.   By the way, your hair is on my timeline.  Now, at 24 days, I wish I had shaved things when the small bunches started falling out....at least when they started falling out a little more rapidly.  I wasn't ready to go there, so just got mine cut really short.  That helped, for about 2 days, until the gaps started widening....and widening.  Now it doesn't look nice so I cover it anyhow, and am annoyed at the short hairs that are still falling out.  If we had clippers I'd take them to it right now.  I had a friend come cut it short.......hate to call her back so soon.

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited October 2009

    I just wanted to drop by and give you all some encouragement.  this too will pass.  I finished chemo (4 rounds, a/c) in february--- I had very few side effects ( a little nausea) and was able to work through much of it--but everyone is different.

     My main message is that you WILL get your life back.  My hair is 4 inches, wildly thick and curly--my eyelashes and eyebrows disappeared after I finished chemo, but only for about 2 weeks.  all other hair on my body is growing normally-- I feel great- very healthy and my energy levels (which were more depleted by radiation than chemo) are back to about 90%--I still go to bed a little earlier every night.  

     In the days when I was in chemo or home on a day I could not work, I would wonder if my life would come back?  would I be able to do things with my kids, my h, keep up my career, get back to exercise??? The answer to all of this is YES.... you will do it--there will be some bumps along the way, but you will come out the other side..... we are all cheering you on..... 

    with great affection

    carole 

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2009

    Thanks Carole for reminding us that there life will return to normal again.

    Thank you Shelby and Onty for the additional details. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2009

    Hi girls:

    I am emotionally drained so I will keep this post short...but today was the day for my hair to go.  Yesterday it was coming out in clumps and I had an appointment to pick up my wigs anyway today...so I stopped by the haircuttery on my way and had my top shaved!  Yep - every little last hair is gone. 

    I just took a shower and while it felt rather strange to have a smooth head - it also was as others have said liberating to take control.  I found out that my scalp is not too too odd shaped and I actually will go about whenever possible without any head covering. Since I live in FL that may be tough when outside due to the fact that it is still over 92 degrees and sunny despite the calendar indicating we are in Autumn.   I do love my two wigs though - one is like my original hair - long layered multi-highlighted blonde (aprox 1/2 way down my back or past my remaining boob area), and the other is also multi-highlighted blonde and was originally a bit above shoulder length - now cut to a fun and flirty layered style similar to my pre-chemo interim style.  I still look absolutely ridiculous in scarfs so I doubt that will be in my rotation of coverings. 

    Laura - I fear that with Halloween so close I will truly be confused with a bohemian pirate named "J-Diddy". lol I think it will be best for everyone that I either rock the bald look OR look more like the "old Jac" even though that hairstyle(s) may never return Yell  Also,as to where is Longboat Key - it is about two hours North of Marco Island on the southwest coast of FL - a barrier island off the coast of Sarasota.

    Shelby - congrats on your first tx

    MaryNY - I am to get my second ddAC at 8am on Friday. The first one (no doctor appt that day) took a bit over 3 hours from start to finish.  I was the first in the chair that morning so my bloodwork was back within 2-3 minutes and they just went full speed ahead immediately.  I posted specifics on this thread after it back on Oct 2 or 3 if you go back and look for it.

    Suzi1979 - various tx are different depending upon your dx.  My doctor told me with no uncertainty that my hair would fall out with the ddAC - both of those two drugs are notorious for hair loss.  Sure enough on Day 10 my scalp hurt and tingled, by Day 11 it was falling out if I touched it and today, Day 13, I could literally put my hand in it and a fistfull would come out.

    I will have my hubby take a photo of me tomorrow and post it....

    Goodnight my friends.  Keep fighting the good fight!

    Jaclyn

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  • MarieK
    MarieK Member Posts: 911
    edited October 2009

    It's nice to read that everyone is getting on with their treatments and coping with their SEs.

    Today I woke up feeling somewhat normal and am finally drug free.  I gave myself my last Neupogen shot yesterday and for some reason today l have a bit of bone pain but other than that I'm good!

    Judgejaclyn I too have decided to shave all my hair off. I've got an appt on Friday morning (day 12 post TX) to have it shaved all off and get my wig fitted and trimmed.  I think the falling clumps would just piss me off so I've decided to do a preemptive strike!

    I can't believe your temps - what the heck is going on?  I have been to your Longboat Key.  It was many moons ago with my first husband and some friends whose parents had a place there.  It was really nice but the thing I remember the most was Belgian Waffles at a cafe up the street from where we were staying.

    Now that my appetite is back to normal (and then some) it's no wonder I remember the waffles whenever I see you post!

    Here's wishing everyone (especially Shelby) a good night's sleep tonight!

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