November 2009-Starting Chemo

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BrendaSharon
BrendaSharon Member Posts: 506
edited January 2015 in Chemotherapy - Before, During, and After

InnocentSmileSmileInnocent        SomeDay-SomeWay-A-C-CURE            

                                      "THE WARRIORS"

We are the "WARRIORS" Some may be from Sept, some Oct. and most November, some may be whimpy, some may be strong, some may be well educated, some not, some may be rich, some poor , some may be princess, some may be queens, some live on the West coast, some on the East, some across the pond, some from down under, BUT one thing we have in common, is that we are sisters, and we will continue to help each other in this battle. We will learn from each other on this journey to beat -C-!!!!~SomeDay-SomeWay-A-C-CURE!!!

Let the November 2009 "WARRIOR"Rollcall" begin!!!!~~~~~~and END~~~~!!!!!!!!

My treatment is once every 3 weeks, 8 weeks,  (Cytoxan,Fluorouracil,Adriamycian).

October 28, 2009 - (CA-FU-5) every 3wks. X

                                       (((((POST  SMILES)))))

Smile   Kiss   Laughing   Wink   Cool   Smile    Kiss    Laughing    Wink   Cool    Smile    Kiss    Laughing    Wink     Cool

Remember this is a place to come to scream, yell, whine if you like!!!  As well to share your journey of experiences. The good as well as the bad. The scary times and the oh that wasn't so bad times. I realize too, each of us is scared mostly of the unknown, yet remember as sisters can learn from each other as we go thru these long weeks ahead. We can do this together, with the help of one another!!!!!

                                               

   November 2010               We have all graduated as "Warriors"

This was quite a year for all of us. The journey that not one of us will ever forget or care to ride again, but if we have to WE DO know how to be strong and fight this fight again if need be. We created a friendship that will last our lives. We have a new group of sisters that will be in our hearts forever.

((((WARRIOR HUGS)))))     Brenda
Diagnosis: 8/13/2009, ILC, 2cm, Stage IIb, Grade 2, 2/24 nodes, mets, ER+/PR+, HER2-

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  • mommy2two
    mommy2two Member Posts: 130
    edited October 2009

    Just found out yesterday due to oncotype score that I will start my first treatment on Oct. 30th (4 rounds of TC..I think?).  Scared to death and I really don't know what to expect since I haven't had time to read the postings of the Oct. sisters yet.  You can bet I will make the time now!  Thanks for starting the thread Brenda.

    Toyah-Oct. 30, 2009

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    Hi mommy2two,

    Sorry for your news, but at least we can go thru these experiences together.  I first thought I wouldn't need chemo either, but after surgery #2 when they realized there was more NODE involvement, it then became a must. I'll only be two days ahead of you with treatment, so I will let you know how I fare.

    I went to "Chemo-Class" last evening with my hubby. I told my nurse I insisted on "Emend" for the nausea. Again,she said they don't prescribe this right off. They try other methods first. I explained to her if the meds they give me didn't work, that I would have to drive 120 miles to get a different prescription filled for medication and by then it would be too, too late to start with the "Emend".  She did say she would speak to the Doc today and if he agreed and if my insurance covers this they would prescribe it to me. I will call her later today to get the news. My understanding is that the "Emend" is the BEST choice for nausea according to the "ASCO" guidlines. I'll let you know what she says. If they say NO, I will let you know what they give me and weather it works or NOT! Not being able to hold down my food scares me more than loosing my hair.

    I am having my hair all cut off the morning of my first chemo treatment. I'm sending it off to "Hip-Hat-Hair" to have it made into a hairpice that I can wear under any hat or cap. I LOVE my own hair, so this is my way of preserving it forever, just in case I come back as a curly redhead or something else other than what I'm used to. Straight, long, very platium hair. Funny thing, about 10 months ago I cut about 10" off my hair, and sent it to off to "Locks of Love". You never know! Strangely enough Hip-Hat-Hair says you need at least 8" to to do the hat thingy. Well I measured and I had 8" exactly left. so, I  have enough for mine and feel good that I could still help a sweet youngin out there in the world. Lord knows this is hard enough to go through!!!!  

    I have read all of October postings from the sisters and it has helped me a bunch. It even helps me know what to ask when I see the onc's and nurses, etc.

    Have a blessed day,

    (((((Soft HUGS)))))

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  • azdiva
    azdiva Member Posts: 201
    edited October 2009

    Hi Ladies!

    I'm sorry you had to start this thread.  This isn't a fun journey for anyone, but even in my short time on the boards, I have found support from other gals.  It is so different speaking to others who actually understand what is going on because they've been through it!  Toyah - I'm on TC x 6, and will have my 2d tx on 10/28.  So far my se's have been manageable, and I have been able to do most everything I could before.  Just more tired.  

    I'm from the Starting Chemo October 2009 group.  Check us out!  We're right ahead of you, and are going through what you may experience.  I wish you all the best!   

    Love to All - 

    Laura 

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    Thanks Laura.

    No the journey isn't fun, but everyone on this site has made things a little easier to bear.

    I see you are on the same TX as Toyah - good to hear the s/e have been manageable!

    I haven't seen anyone on the same regimen as myself yet. I even posted a separate thread, but I got no response to it.

    As you said earlier, just knowing other people who are truly going thru the same things! The fact they understand what we are dealing with because they are too experiencing the same types of up and downs. The side effects may differ, form sister to sister, yet they are, oh so much the same.

     Good Luck to you on treatment #2.

     We will all be watching as "The October Sister's" journey continues a step ahead.

      (((((HUGS))))

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  • mommy2two
    mommy2two Member Posts: 130
    edited October 2009

    Thank you Brenda and Laura!  I wish you both the best of luck with your treatments and I look forward to hearing about how both of you are doing.  My one saving grace is knowing that I have other sisters on this journey!!  I hate to say that losing my hair is the thing I hate the most.  I guess I'm a little vain but I've found this entire process a little overwhelming.  My oncologist suggested that I donate my hair to Locks of Love but I haven't come to terms with that yet so we will see.  I tried to explain to my 11 & 9 year old last night why I now need chemo and what the se's will be.  They just looked at me funny and said that if anyone makes fun of me because I have no hair, they will beat them up!  LOL...I guess they are okay with it! 

     (((HUGS)))

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    HI girls...

    I started back in late September, but thought I'd bump your post as I saw someone missed it, and I'm sure there will be others looking as November gets closer.

    Good luck to you all.  I'm sure you've heard, but it is really true that the waiting is the worst part, and almost everyone says that the experience isn't as bad as they had feared....not that any of us are ENJOYING it, but still....

    There is a lot of good information on the preparing for chemo threads...be sure to look at those.

    AND GOOD LUCK!!!

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    Good Morning Hopbird,

    Thanks for the bump.  I see your diagnosis date is the same date I had. So strange everyone is different yet the same, so to say. Same date DX, yet my TX doesn't start till this Wed. and you started late Sept. I guess with the late findings of the cancer in my "Sentinel Nodes" which of course meant a second surgery  to the "Axilla Lymph Nodes" , which also they found more cancer, so this has been what set me back. The closer the treatment gets the more nervous I'm getting. I could not sleep last night. All I keep thinking about is Wednesday.

    Anyhow, Love to all sisters and Thankyou soooooooooo much!!!!

    (((((HUGS)))))

    FIRST CHEMO TX.~~~~~~~~Uuuuuggghhhhhhhhhhh!!!!!!!!!!!!!!!!Fear of The UNKNOWN!!!!

    Thank you all for all the postings in Septmeber that has helped me understand some of what I may go through some things I may need, even before, as well during treatment. This site is a svaiour to all of us sisters.

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    Hi Brenda...I didn't notice that about our dates.  I have sorta a long story, but to keep this brief I'll just explain that my chemo is preadjuvant, so I will have surgery when my chemo is over.  That got me in a little quicker.

    Good luck to you on Wednesday.  It will be better once you know what to expect.  I had a nurse today that gave me my first infusion five weeks ago.  I said something to her about how she might not remember but she was the first one.  Then she looked at me and DID remember, told me what chair I was sitting in.  She told me how much better I looked today than that day.  My problem that day?  Complete terror.  I was sitting and waiting for the drugs and could barely keep the tears from running down my face.  She said now I look as if I'm handling it fine.......which I guess I am, but I'd still rather be doing anything with my days.

    Again, good luck!


    Diagnosis: 8/13/2009, IDC, ER-/PR-, HER2+

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    Hi Hopbird,

    Thanks, You have made me feel a smidge better about tomorrow.  Yes, the FEAR of the unknown is taking over me today. I have noticed that the nurses (APRN) are all so wonderful and helpful as they can be. From the first nurse with the biopsy who calmed me down to my surgical RN to the onc's RN without those girls I would have gone insane!!! I've already started as you say the TERROR!!! The tears!!!! Even last night, I started to realize again how close my -C- DAY was and I FREAKED out. My hubby was tring to calm me. He said my eyes became totaly red and they kinda glazed over. All because I'm sooooo scared of the unkown.

    BUT, You did make me feel a smidge better as i already said!!!  THANKyou!!!! So much!!!!

    (((((HUGS))))) Brenda

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  • Hopbird
    Hopbird Member Posts: 387
    edited October 2009

    I'm glad I could help you feel better!Smile 

    I have to think Terror is normal with this stuff!  I think we all have chemo in the olden days in our mind.  It's no picnic now, but isn't as awful as what we've grown up with for most people.  Good luck again to you........I'm sure you won't sleep too well tonight, and as the ladies that were there watching my chemo terror said.....if you need to cry, do it! 

    I know you'll be fine.  Hugs back to you!

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  • ccnani
    ccnani Member Posts: 46
    edited October 2009

    Hey all you brave warrior sisters!! I will start TCH X 6 every 21 days in November, most likely by the 18th, which will be 12 weeks since my DBL mastectomy. I have been following the posts of all the Sept. and Oct. sisters and am very grateful for their insight and all the sharing of SEs as well as their honest sharing of the emotioins that go along with this DX.  I was DX on 7/10/09 with IDC microcalcifications, approx. 5cm and DCI 2cm. in left breast. right breast ok. Er-Pr- Her2+ grade 3.  MRI on 7/12/09 confirmed DX. Got three opinions from onc surgeons. Had dbl mastectomy on 8/18/09 at USC Los Angeles, at which time they determined IDC was only 6mm.  They did both sentinel node biopsies. Left sentinel 1 positive, removed 27 nodes. Right sentinel negative. Left modified radical mastectomy right prophylactic mastecotmy, inserted spacers. Decided on double because I did not want to wait for any further DXs and other surgeries, didn't like the odds of developing BC in opposite breast. Im much older than you pretty young girls and I still can relate to how you feel about prospect of loosing your hair. Mine is past my bootie. Im 65 yrs old and I'm really ticked off at BC, chemo the onc and the knowlege I'll loose my hair. It's not vanity it's identity!! I can relate to the terror. The surgery for me was easy. Cut and dried. You live thru it or you dont. I did!!  So now , my young and beautiful  plastic surgeon can give me some "new girls", that wont try to kill me!!  And, I wont even have to wear a bra any more , like back in the days!  lol  But this chemo stuff is not so cut and dried! Its so out of controll because you really don't know what will happen. Everyone reacts differently. That is the reason we all need each other because I have already learned what can possibly happen and what to do to prevent some of it or what to do if you can't prevent it. Thanx to the sept. and oct. sisters!  That uncertainty is whats scaring me. Im starting to have nightmares and I havent even started TX. I'm not used to being scared about anything. I have always been a warrior!  I have 6 kids, 12 grandkids, # 13 is in the oven on 200 degrees will be baked and beautiful in may 2010, & 1 grt. grand. Im not ready to check out! I told onc i didn't want to do chemo, he said 50% chance of survival for 3 years. I said I'll do chemo. Don't like the odds! I guess I'm more afriad because I'm not so young anymore. ? Really? No doubt! I need that strength I had in the not so distant past however I'm down with this fight. I was watching 24/7 Pacquio/Cotto last night, I'm a fight real fight fan. I could really relate to those two warriors preparing for the most important fight of their lives, cause thats how I feel right now. I'm getting ready for this championship fight! The day I got DX I felt like someone kicked me in the stomach, I stayed silent for about a minute and then I came out swinging! I wanted to cry but was 2 angry. So far I havent cried, thought I would after surgery but no tears came.  I wonder when those  hot tears,  just behind my lids,  will finally spill out and burn as they stream down my face? I'm wondering if it will be when I have to cut off my hair? Whatever!! I'm preparing for it all. You sisters should check out the list one of the sisters has posted on all the things you will need for when you start chemo. I especially loved the "large dog bed" on the list, and her explanation for this particular necessity. I laughed until I had to run to the bathroom," leaky pipes" you know.  If you can, watch a great  movie call" why I wore lipstick to my mastectomy," its also a book. I feel extremely empathetic toward all you beautiful young ladies with young children who are going thru this nightmare with BC. I can't imagine what I would have done with all my six and trying to deal with this mess!!! Bless all you girls. Be sure to read about bags of frozen peas for chemo if your doing TCH. Read all the girls posts and you will be truely prepared for almost anything. I send all you girls alotsa luv Blessings and hugs . CCnani L.A. Ca.

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  • Shel
    Shel Member Posts: 41
    edited October 2009

    Hi, this is my first post, although I have been reading the forums since July when things started to look dicey for me.  I am scheduled to start chemo on November 5.  It was a no brainer for me whether or not to do chemo as I am triple negative.  The oncologist took a long time to describe the standard regime -- dense dose AC every two weeks for four weeks, followed by T for 2 X 4.  At the very end, however, he offered a clinical trial.  He is calling this trial "denser dose".  There are four arms, but basically you go longer and get more chemo -- same ACT drugs though.  The trials last 27-29 weeks instead of the normal 18 weeks on the standard treatment.  This trial has been going on for awhile but there are no results yet.  They have found apparently that patients who get chemo prior to surgery in this "denser dose" see greater tumor shrinkage. And as my tumor was largish (2.7 cm), he thought it might was worth consideration.  My dilemna is how do you decide whether to go on a trial or not.  I work full time, so the longer time frame is problematic.  But I have too older teenagers who have already lost a parent to cancer, so I owe them my best effort.  Does anyone have any advice about how to make these decisions?

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  • chicagomom
    chicagomom Member Posts: 35
    edited October 2009

    Shel-

    do you happen to live on the East Coast?  I am in Chicago and seems the protocol is TCH - East Coast - AC-T with herceptin.  I was offered the AC-T plus herceptin with a clinical trial of Lapatinib today.  I don't know what to do...is that the trial you were offered, too?

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  • Shel
    Shel Member Posts: 41
    edited October 2009

    Hi, jkwick74

    I am in Michigan.  I don't think it is the same the same trial.  I am triple negative so no herceptin for me.  I don't see anything in my trial literature that says Lapatinib.  My trial has four arms with different delivery methods (ie, IV, orally) and different combinations.  But all the same drugs (AC-T).  Because of the length of time (26 weeks as opposed to 18) and because they can't tell me what the benefits will be, I don't think I am going to do it.  Chemo scares me a little anyway and I would like to be done with it ASAP.  Best of luck with your decision.  It's very difficult to make a good decision when you have no idea of the outcome.   

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  • mommy2two
    mommy2two Member Posts: 130
    edited October 2009

    Hi BrendaSharon - I agree that the fear of the unknown is VERY scary.  All last week, I waivered on my decision to proceed with the chemo that my oncologist recommended.  I talked to a lot of people and finally made my decision.  I feel like I'm a strong person and I know that I can make it through this just as my fellow sisters before me have.  Once I made the final decision, I was at peace and although a little nervous, I am no longer afraid.  Since I am only 34, I have a lot of life left to live and I want to see my two children grow up so I know I have to fight this with everything I have.  I know you had your first tx yesterday and I said a prayer for you.  I hope you are doing well and I look forward to hearing from you soon!

    ((((Hugs)))))

    ~Toyah

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    Hi sisters,

    Mommy2two, Yesterday, first treatment of Chemo.  I have been drinking water like crazy!!! Went fairly well. I am so far OK. Last eve my lemonade tasted yucky and was thick, hard to explain, NO NAUSEA so far!!! I did get the "Emend" prescribed to me. It was a small battle getting it, but the onc finally agreed and prescribed it for me. !st DAY after, This morning I have a kinda dull headache, which I'm taking Tylenol for, it does seem to be easing up some. At my "Port" site there is still some pain so I took one of my pain pills to help. My appetite is so-so. Eating small amounts here and there. Salty things seem to be my fave. I was able to come to work. I will keep you posted on how the next couple days go. Your first treatment is Friday, is that still correct? I will watch for you and I will pray for you also this Friday, that all goes as smooth as it did for me. I will keep you posted!!  At least I can say the total "FEAR FACTOR" is over. Pppphhhheeeewwwww!!!!! Thank you for your thoughts and prayers I know they helped. I too am NOT AFRAID any longer. I will beat this thing !!!!!

    Shel, Welcome to the board. Sorry that you have to go through this with having children to deal with and all. I know any effort we make for our children is good. Like mommy2two she has little children, I know I wouldn't know what to do. I have all I can do to keep me in control. But, then again having children can keep you mind of you so to speak. As far as the "Trials",I really don't know what to say about them, but I'm sure someone will get an answer to you that knows. Also have you thought about there may be another place in this site for that topic in particular? The best of luck to you and keep us posted. We are all in this together and this site does give so much info we all need.!!!! As scary as the Chemo seemed to me, now that I've had the first treatment done and over I actually am OK today. I'm over the fear and realize "WE CAN DO THIS" together we all can fight this battle not only for us, but our future sisters,

    CCnani,  sorry for you to have to join us, but glad you did for the knowledge you can learn and just to be able to have girls, women that do relate to you problems. i don't know how you haven't cried! All I did was cry a river since I got my DX on Aug 13th> Now that I had my FIRST Chemo yesterday, I'm OK. I know it is doable as everyone says. Of course later today I may change my mind again, but that's what us women do best. I'm just not a scared now that I have had one treatment behind me. The fear of what through my mind was way worse than what happened. WOW, I can't believe you had 27 nodes taken out. Was the one positive in the "Sentinel Nodes" or in the "Lymph"Nodes?  I had one in my sentinel and 2 in my lymph. During my first surgery they took 3 sentinel node, and at first thought they where negative. A week later they had discovered the 2mm cancerous cell in one of the sentinel nodes, so I went back for the "Complete Axillary Dissection" where they removed 21 of the lymph nodes. So, mine where done at two separate surgeries. If I hadn't had any bad nodes during the first one I would have not needed chemo. Good luck to you I understand your age thing. Your 65 and I'm 56. My kids are all far away and sometimes I wish they could be with me. Yet it's best they aren't.

    Hey Hopbird, Your right I didn't sleep well Tues night before the Chemo Wed., but I slept really good last night. I only woke up once, I went to the restroom, guzzled a little water, sucked on a hard candy, put on my headset with some really nice music and passed out again. Slept better than I have in a long time . Today so far just a dull headache.  So, YEAH!!!!! The "Terror" is over!!Thanks for all your hugs and wishes.

    Laura, Thanks for your thoughts! I have been watching the Oct. Thread and it has helped tremendously.Lots of insight and just having an idea of what's really up is very useful.

    (((((HUGS)))))

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    Hi sisters,

    Mommy2two, Yesterday, first treatment of Chemo.  I have been drinking water like crazy!!! Went fairly well. I am so far OK. Last eve my lemonade tasted yucky and was thick, hard to explain, NO NAUSEA so far!!! I did get the "Emend" prescribed to me. It was a small battle getting it, but the onc finally agreed and prescribed it for me. !st DAY after, This morning I have a kinda dull headache, which I'm taking Tylenol for, it does seem to be easing up some. At my "Port" site there is still some pain so I took one of my pain pills to help. My appetite is so-so. Eating small amounts here and there. Salty things seem to be my fave. I was able to come to work. I will keep you posted on how the next couple days go. Your first treatment is Friday, is that still correct? I will watch for you and I will pray for you also this Friday, that all goes as smooth as it did for me. I will keep you posted!!  At least I can say the total "FEAR FACTOR" is over. Pppphhhheeeewwwww!!!!! Thank you for your thoughts and prayers I know they helped. I too am NOT AFRAID any longer. I will beat this thing !!!!!

    Shel, Welcome to the board. Sorry that you have to go through this with having children to deal with and all. I know any effort we make for our children is good. Like mommy2two she has little children, I know I wouldn't know what to do. I have all I can do to keep me in control. But, then again having children can keep you mind of you so to speak. As far as the "Trials",I really don't know what to say about them, but I'm sure someone will get an answer to you that knows. Also have you thought about there may be another place in this site for that topic in particular? The best of luck to you and keep us posted. We are all in this together and this site does give so much info we all need.!!!! As scary as the Chemo seemed to me, now that I've had the first treatment done and over I actually am OK today. I'm over the fear and realize "WE CAN DO THIS" together we all can fight this battle not only for us, but our future sisters,

    CCnani,  sorry for you to have to join us, but glad you did for the knowledge you can learn and just to be able to have girls, women that do relate to you problems. i don't know how you haven't cried! All I did was cry a river since I got my DX on Aug 13th> Now that I had my FIRST Chemo yesterday, I'm OK. I know it is doable as everyone says. Of course later today I may change my mind again, but that's what us women do best. I'm just not a scared now that I have had one treatment behind me. The fear of what through my mind was way worse than what happened. WOW, I can't believe you had 27 nodes taken out. Was the one positive in the "Sentinel Nodes" or in the "Lymph"Nodes?  I had one in my sentinel and 2 in my lymph. During my first surgery they took 3 sentinel node, and at first thought they where negative. A week later they had discovered the 2mm cancerous cell in one of the sentinel nodes, so I went back for the "Complete Axillary Dissection" where they removed 21 of the lymph nodes. So, mine where done at two separate surgeries. If I hadn't had any bad nodes during the first one I would have not needed chemo. Good luck to you I understand your age thing. Your 65 and I'm 56. My kids are all far away and sometimes I wish they could be with me. Yet it's best they aren't.

    Hey Hopbird, Your right I didn't sleep well Tues night before the Chemo Wed., but I slept really good last night. I only woke up once, I went to the restroom, guzzled a little water, sucked on a hard candy, put on my headset with some really nice music and passed out again. Slept better than I have in a long time . Today so far just a dull headache.  So, YEAH!!!!! The "Terror" is over!!Thanks for all your hugs and wishes.

    Laura, Thanks for your thoughts! I have been watching the Oct. Thread and it has helped tremendously.Lots of insight and just having an idea of what's really up is very useful.

    (((((HUGS)))))

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  • mommy2two
    mommy2two Member Posts: 130
    edited October 2009

    Brenda - You have such a great attitude about everything!  Stay positive and I'm glad you are doing okay now.  Tomorrow is my big day...not nervous now but I don't know how I will feel in the morning.  I'm working half a day before and I hope I can go back to work on Monday.  I can't wait for the first tx to be OVER  :-)

    Shel- Welcome!  I'm sorry you have to go thru this but this board will be a big help.  Although I can't help you with the decision on the trial, please know that we are all here for you if you need anything.  Together we can get thru this! 

    CCnai - Welcome to the board.  It sucks that we have to be here and I'm ticked off at bc also.  I never shed a tear about my diagnosis until I found out that I would have to go thru chemo....go figure!  You are SO ready for your "championship fight" and I know you will come out a winner!  

    azdiva - Hope you are doing well after your 2nd tx yesterday.  Let us know how you are feeling...sending positive thoughts your way.

    Hugs to all

    ~Toyah 

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  • ccnani
    ccnani Member Posts: 46
    edited October 2009

     Hi to all my sister troopers! Just read thru all the posts. First to BrendaSharon, I went back over my path report re. your question about the 27 nodes removed during bi-lateral mastectomy. Then I realized that you are Her2-. Big plus! As far as I can tell, Im the only Her2 +++, Er-Pr- in the november girls. Though my idc was only 6mm in size I have very high grade IDC & I'm Her2+ and Er&Pr - which means I cannot benefit from any treatment but chemo and herceptin. Only 20% of women who get BC have this diagnosis and its a big negative. Not surprised that I would naturally have to have some weird form of breast cancer, couldn't be like 80% of women who are Her2- & Er,PR+. The 1st sentinel node on the left breast, where the cancer was, was positive. He took all nodes down to level two to make sure there was no more invasive cancer. I wont have to have rads because there was only 1 positive and thats a big plus because the BC was on left side, right above my heart. I think the absence of tears is because I became very tough having to raise my 6 kids by myself and I could not afford to be anything but tough. Maybe the night before chemo or the day of chemo those tears will run but 2 of my kids will be with me and they have rarely ever seen me break down!! I think its the rock of gibralter complex!! Im so glad your 1st tx went good and Im praying that it will stay that way. I won't get a port unless my veins cant hold up. My Onc. doesn't believe in doing extra stuff unless there is a complication. No neulasta either unless I bottom out.

    Hi Shel, I was offered a trial also but decided against it. I went to the web and researched women who were either on the trial or were thinking of joining . Researched extra possible side effects of the trial drug, Avastin, not a chemo drug. After research I decided that I had enough problems with TCH to worry about. Even my second opinion Onc suggested this same trial.  So first research, is it another chemo drug, then find out if it is a double blind trial in which you don't know if you will be getting the drug. Trials are long term commitments. Then find out if it is 1st, 2nd or 3rd stage trial. If it is 3rd stage that means they know the drug works! Almost ready for market and FDA approval.  They also offered me a trial where they would be giving half the women acetyl-L-carnityne , not a drug, to test if it is effective against the neuropathy associated with some chemo drugs . In that case you did not know if you would get the drug. This trial was third stage, which means they already know that it has a good effect. I decided not to join, went out and bought L-carnityne and will ask Onc to tell me what dosage to take.

     Mommy2two, thanku for welcome! I send out prayers to you and your little ones! Like I said before I have no idea how I would deal with this DX if my 6 were young. Although, when I was considering not doing chemo all my 12 grandkids were freaking out! I'm so glad you and all the other november girls are Her2- Er&Pr +,you have so many more options for fighting this BC. I send u and all the girls alota luv and so much wishes for good luck on your 1st tx.

    I notice that there are comments about different treatments form east coast to west coast. Look up Dr. Dennis Slamon from UCLA in southern california. You will find he was the pioneer of herceptin and the combination of TCH, that may be why on the west coast they don't use AC as much. Also the combination of AC with herceptin is not good because of possible heart complications. Look up clinical trials presented in 2007 & 2008 to the San Antonio breast conference. Another reason for the differences in treatment has to do with a womans Her2 and Er, Pr status. Girls who are Her2 negative don't get herceptin. Women who are Her2 negative & Er,Pr+  have so many other options for treatment. I will be getting TCH. The T is taxotere the C is carboplatin and the H is herceptin. Taxotere has many fewer SEs that affect the heart as compared to the A in AC. On the west coast they have been using AC less, due to the better response of all BC women, who are early stage. There is a lesser probability of heart problems. So they can use TC with women who are Her2 negative  and Er,Pr positive, with some combination of follow up treatment like tamoxifin or other estrogen, progestorin inhibitors, or TCH for women who have positive status with regard to Her2 & Er,Pr negative.

    Big hello to hopbird & jkwick74 my fellow Her2+ sisters. I know you guys are ahead of us but I began reading all comments from sisters starting in Sept. and Oct. Many thanx to all those who have gone ahead of us for your insight. I had decided in the beginning not to do chemo but you show such bravery and honesty I decided that I could kick this BCs butt & the dang chemo too!!! I also was influenced by the fact that one of my daughters, is expecting my 13th grand baby who will be born in may 2010, I need to be here for her and the baby. I'm still scared but becoming resigned and still mad as H###! I think I'm at my best when the lioness ROARS!!! All u beautiful girls have a blessed day & hang in there!!! Best to all from beautiful sunny california!

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  • JustmeAlicia
    JustmeAlicia Member Posts: 1,529
    edited October 2009

    I start Monday for 16 weeks.  AC X4 and Taxol X4.  8 treatments every other week.  UGH !!  So scared. 

    Look forward to getting to know you all...

    Alicia

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  • Scoobydoo
    Scoobydoo Member Posts: 499
    edited October 2009

    Hi Ladies.

    Just popping in from the September 2009 and October 2009 threads to give you a word of encouragement as you begin this chemo journey.  While not fun, you CAN DO this!!! I have been through many SEs but thankfully there are over the counter meds than can help you get through each one.  Make sure you cherish your good days.  My good days normally come after day 7.  I am on a dose dense tx of 4 AC every two weeks and 4 T every two weeks.  I have just completed my last AC tx yesterday. 

    If there is anyone going on AC...make sure you ask your RN to slow down the cyotoxan to one hour instead of 45 minutes and take either 1000 mg of tylenol or sudafed PE and one 500 mg of tylenol to help combat headache and sinus pressure from the cytoxan. You can bring it with you and ask your nurse if it is okay that you can take it.  I normally take it 30 minutes prior to getting cytoxan.

    I am the biggest chicken in the world and if I can make it through, then I know you ladies can make it through.  The wait and fear of the unkown is worse than the actual chemo.

    If you have any questions feel free to pm me if I can help.

    I will be praying for you.

    Anita

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    mommy2two/Toya,Good Morning Sweet Lady, I will give you a Smile today for your first TX and I hope and pray your day goes as well for you as mine has been so far. I'm day 2 after and still hanging in OK. I believe the steroids are still kickin and making me feel good. So far just dull headaches which I can relieve with the Tylenol, no problem. Slight loss of appetite, but NO nausea. I know the "Emend" was worth insisting upon. My prayers and all good wishes are with you thru this day and each one following.

    WELCOME:  Innocent  JustmeAlicia/Alicia, I understand this is not the kind of board we may want to join, but it sure is the most helpful dissuasion board I have ever been on.  All the sisters on this board everywhere are helpful and have the information and support we need in so many ways. And just the fact we all understand each other. Weather it's good bad or indifferent, we can listen and and truly feel what each of our other sisters are going through. The pain, the agony, the tears, sometimes heart breaks and then all in all a total emotional support team. we are all in this fight together and we will conquoer.

    ScoobyDoo/Anita, I have been following October & Sept. lots of words of wisdom for all of us to follow.  I too am chicken little to say the least. But, now that I have finally made it thru my first round of Chemo, I'm finally somewhat relieved. I'm over the shear "TERROR" of it. I didn't turn into a purple alien as I imagined in my mind and nightmares of.Thanks for the advice for the Tylenol 30 min. prior to the Cytoxan. That may help me with that headaches I had.

    ccnani, so sorry for you all the negatives and plus's in the wrong areas. I realized this is why your treatment options where so few.  Thank goodness you are a warrior. We will all need our amour throughout these trial we are facing. I believe and have faith we will all make it past this and head on to better days. We have our grandchildren to help us smile. I thought of my baby Dalton as I was receiving TX and it would put a smile upon my face. And well my Kylee girl, I want to see her grow up and look forward to her marriage. So, I will be in the battle with you for life.

    (((((HUGS))))) To all as good as gets!!!~~~~~~~~~~~~~Gentle Hugs

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  • doronet
    doronet Member Posts: 342
    edited October 2009

    I'm new at posting/blogging/chatting, etc. but I've decided I need some support from the super-women I've read about on this site.  I don't even know where/how to start something here, so I'l probably not do this right.  I start chemo Nov. 3rd and I'm scared out of my mind.  I get A/C every other week for 8 weeks then Taxol once a week for 8 weeks.  I am 56 years old, I exercise regularly, but since my diagnosis Sept. 1st, I feel have lost control over everything in my life. I have a phobia of hospitals, doctors, and needles,so this has been the worse part of hell for me.   I don't want to get sick from the chemo. I don't want to lose my hair. I don't want to ask other people for help. I don't want my family to have to worry about me or have to take care of.  I cry all the time, and I don't even know why.  Does someone have any words of wisdom?Frown please.

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  • mommy2two
    mommy2two Member Posts: 130
    edited October 2009

    doronet473 - I'm so sorry that you've had to join us on this board.  This board has been a life-saver for me because I've never felt that any of my friends and family can truely understand what I'm going through.  We all know exactly how you feel and we will be with you during every step of your journey.  I start my first tx in about 4 hours and I'm so scared that I think I'm going to throw up BUT I will not let cancer ruin or dictate my life.  It is normal to have the feelings you are having.  Nobody wants to get sick from chemo or lose their hair.  They have some great drugs these days that will combat most of the side effects and it is not unheard of for women to go through depression after hearing about their diagnosis.  There is nothing wrong with talking to your doctor and asking him for medication to help combat the "blues".  I also don't talk much to my family about what I'm going through.  I try to put up a brave front so they won't fall apart in front of me because I don't think I could handle that.  I have learned though that my family is confused and hurting just as much as I am and although they can't fix this for me, it helps them when I let them help me.  You are going to need your family more than ever so try to talk to them and let them help you so they can feel they are making some kind of contribution to your recovery.  You CAN do this and you WILL win this fight!

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    doronet473~~~~~~Welcome to this site, although SORRY you have to be here, but this is the best place to be!!!! If you never blogged before you picked the right time. All you have to do is read the postings. You can even go back to October's girls and you can see all the words of wisdom to have us prepared for anything you may face through these challenging times. i too am 56 years old and felt like I was out of control. I also am a BIG FRIGGING CHICKEN.  I can say, now that I have my FIRST CHEMO TX out of the way (Oct.28) I am now not so scared. I am taking all the proper meds for the side affects. Emend" is WONDERFUL!!!! No nausea at all. So far I've only had a slight dull headache which I can relieve with Tylenol. This is my 2nd day post TX. My hair I was so freaking worried about. I loved my hair. So, I cut it all of out of choice before my first chemo. The morning of actually and i sent it off to Hip-Hat-Hair to have a piece made out of my own hair. I can't stand the feel of a wig on my head, so I made this choice. If you need to CRY DO SO. I do a lot and this is the place to let it all out. WE all understand the emotions you are going through. We are here for you!!!!

    Warm (((((HUGS))))) Brenda 

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  • doronet
    doronet Member Posts: 342
    edited October 2009

    OMgosh.  I guess starting on this site was the best thing I could possibly have done...just the encouragement from BrendaSharon and mommy2two was a huge help.  (I could have written all that BrendaSharon wrote!)  The only difference is that I cut off my long hair to a very short cut weeks ago in prep. for the possibility of chemo. Actually, I felt like I knew you, guys, already since I had read all the posting up to mine.  I definitely will go back to Oct.'s posting and see what was said.  Thank you.  I don't know about you, but all of this seems so surreal, like it really isn't happening.  I keep thinking I'm going to wake up from this really horrible dream.  One big mistake I made was to have the oncotype test done and only thing that did was to add 3 weeks of waiting-hell just to find out I need the  chemo anyway.  that stunk.  port placement was a 3rd surgery for me, after the original lumpectomy and then a re-excision 2 weeks later.  port is still very uncomfortable, but I'm wondering if it is because I am on the thin-side and there is nothing to cushion the port when I move. hmmm.

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    doronet473, Yes, i agree with the "Surreal" part of all this. BUT when we wake up it's still there, but we will battle this and survive. I'm glad I don't have to go thru dealing with younger children like mommy2two, that would be soooo hard. Ny boys are grown up 34-38 yrs. old and I'm glad they don't see me everyday with all my up and downs. I'll say this is like a roll a coaster ride, just not a thrill a minute. I too had three surgery's. The lumpectomy, then 2 weeks later the "Axillary Dissection" Then because I had an infection from my drain site i had to wait 4 weeks until my "port Placement", done on the 15th of this month. I still have some pain associated with my port.  I don't know if being thin is a problem, because the "Port" on everyone is close to the top of the skin anyways. I feel as if mine is going to pop out and it scares me, so I find myself holding my my chest where the site is just in case. I can feel it, I can even feel the three little nipples on the port itself. Kinda weird. BUT, I'm getting used to it. I do know it's worth continuing to take the pain meds. Sometimes I try to quit then realize that is what I need, so I get back on them. I'm stubborn when it comes to pain meds, never have liked them, but right now I need to let them be my friend indeed. As long as we take our meds we can make it through all this mess!!!

    My "Port" is sometimes like sharp stabbing pains at times and others just a dull ache. I was really scared when I went in for my first chemo TX this Wed. because the "Port" site was in pain, but it went OK. Like I said I was so glad to get that first chemo TX over with. The fear of the unknown is finally over for me.

    Good Luck to you on your journey~~~~~~~~~We are here for you(((((HUGS)))))

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  • BrendaSharon
    BrendaSharon Member Posts: 506
    edited October 2009

    doronet473, Yes, i agree with the "Surreal" part of all this. BUT when we wake up it's still there, but we will battle this and survive. I'm glad I don't have to go thru dealing with younger children like mommy2two, that would be soooo hard. Ny boys are grown up 34-38 yrs. old and I'm glad they don't see me everyday with all my up and downs. I'll say this is like a roll a coaster ride, just not a thrill a minute. I too had three surgery's. The lumpectomy, then 2 weeks later the "Axillary Dissection" Then because I had an infection from my drain site i had to wait 4 weeks until my "port Placement", done on the 15th of this month. I still have some pain associated with my port.  I don't know if being thin is a problem, because the "Port" on everyone is close to the top of the skin anyways. I feel as if mine is going to pop out and it scares me, so I find myself holding my my chest where the site is just in case. I can feel it, I can even feel the three little nipples on the port itself. Kinda weird. BUT, I'm getting used to it. I do know it's worth continuing to take the pain meds. Sometimes I try to quit then realize that is what I need, so I get back on them. I'm stubborn when it comes to pain meds, never have liked them, but right now I need to let them be my friend indeed. As long as we take our meds we can make it through all this mess!!!

    My "Port" is sometimes like sharp stabbing pains at times and others just a dull ache. I was really scared when I went in for my first chemo TX this Wed. because the "Port" site was in pain, but it went OK. Like I said I was so glad to get that first chemo TX over with. The fear of the unknown is finally over for me.

    Good Luck to you on your journey~~~~~~~~~We are here for you(((((HUGS)))))

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  • feistybluegecko
    feistybluegecko Member Posts: 133
    edited October 2009

    hi to all who are sharing this journey

    i had my first chemo one week ago - 7 more to go.  i was so so scared, and although it was much more bearable than i had feared, i am now afraid of reactions to Chemo 2.....

     i am sorry i haven't quite worked out the terms yet (TX etc) - bear with me and i will get there Laughing

    warm hugs to all

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  • doronet
    doronet Member Posts: 342
    edited October 2009

    Brenda, my children are 19, she is at college 3 hrs. away, and a 15 yr. old son, who will be having to watch what I go through with the chemo.  I, too,  philippa, am learning the "lingo" of the board, though this was never something I aspired to learn. [joke]  Does "TX" mean  treatment? Glad to hear the port is a "pain" to others besides me.  I get sick to my stomach when I look at it...so I don't look at it.

    My "saving grace" is "Ativan," as I have l anxiety attacks, so that med. has helped a lot.  It also helps me to get some amount of sleep at night. And the oxicodine has helped with the port-pain, though I only take it a night now.  

     I do try to tell myself that there is light at the end of the tunnel for me.  I have a cousin who had to have her leg amputated due to dr. error during a routine knee replacement surgery...and I think I have it bad??  I always feel so selfish when I think of her and still pity myself.  At least I'll get my life back.  Hers will never be the same.  Even with knowing that, I just can't seem to get past my own fear.

    I pray that mommy2two made it through today.

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