Any Her2/Neu Starting Chemo in October?

Seven11

Kim,

I saw my date had a question mark.  I started on 9/11, appropriately enough, and will be ending around Christmas.

Thank you,

Katie 

Mocity

Thank you for the responses.  I am not taking the Nuelasta shot.... my Onc said I shouldn't need this with the weekly regimen I am on.  I think Taxol can cause joint and muscle pain.  I feel better today... alot better than yesterday.  Just hate to think I have to go back again Thursday.  Maybe my body is adjusting a bit after the first one.  He also mentioned the first is the "loading dose" of the Herceptin.

Good to hear about the port.  I think I will be glad it is in my arm (if I have to have one!) but for now it is sore.  Showering is interesting between the expanders and keeping the arm port dry.  Kim, do you put the numbing cream on your  port before you go for treatment?  They gave me some and said to put it on an hour before I go to keep from feeling the "stick".

bluedasher, I hear you about the pillows.  I have a "rig" set up becasue I still can't get comfortable on my back with the expanders and now have my arm propped up as well.  I feel like a "science experiment".

Kim, will you add me to the list?  I know I started a little late at Nov 7th but I haven't seen a thread for November.  My regimen is Taxol/Herceptin for 12 weeks weekly and then Herceptin every 3 weeks for a year.

kimmysue

Hi ladies,

Here is the updated list.

Crystal... You are more than welcome to join this!!!

I can't remember who asked but I do get a numbing cream for my port.

August 18 - Chelli  - Treatment: Herceptin, Cytoxan, Epirubicin, Taxotere, every 3wks

August 29 - Gayleee - Treatment: 6 rounds of chemo on a 3-week cycle -- TCH the first week, then just Herceptin the next 2 weeks. Then Herceptin once every three weeks for a year

Sept. 18 - Christina 66 - Treatment:

Sept. 22 - LuvLafLern - Treatment: Herceptin and Taxol for the next three months every week. Then it shifts to FEC and Herceptin

Sept.11-  KLF - Treatment: TCH X6 every three weeks

Sept. 25 - Terille - Treatment: AC+H

Sept. 26 - Anglo74 - Treatment:TCHA X6

Oct 2 - TNT - Treatment: taxotere, cytoxan and herceptin for 4 tx, every three weeks, then a year of herceptin only.-

Oct. 2 -  Dee Marie- Treatment:

Oct. 2 - plakatakr - Treatment: taxotere, cytoxan and herceptin for 4 tx, every three weeks, then a year of herceptin only.-

Oct. 9 - pandazankar - Treatment:

Oct. 15 - Zaks Mom- Treatment: AC

Oct. 16 - StrongMom - Treatment:

Oct. 23 - KimmySue  - Treatment: TCytoxinH x4  Herceptin once every three weeks for a year followed by Herceptin for  year.

Oct. 23 - Jill323  - Treatment: Taxol &  Herceptin once every three weeks for a year

Oct. 27 -  Bluedasher -  Treatment: TCH X6- Herceptin once every three weeks for a year

Oct. 29 -  My2boys - Treatment:TCH X6- Herceptin once every three weeks for a year

Nov. 7 -  CrystlC - Treatment: Taxol/Herceptin weekly for 12 weeks and then Herceptin every 3 weeks for a year.   

mattscot

I recently obtained my first opinion from MSKettering in Basking ridge NJ -- their protocol is AC T  (dose dense every 2 weeks)  plus Herceptin weekly. They recently performed an internal study in which they determined that when Herceptin combined with dose dense chemo reduces the risk of heart problems..  

2nd opinion (NJ - local oncologist)-- pretty much the same ...my understanding is is that this is the standard on the east coast  -- this doctor noted in the west coast the trend now is TCH...   He is willing to offer TCH if I feel strongly. The other difference was after 2mos of AC (every 2 weeks 4x) -- He reccomends Taxol +Herceptin weekly (for 2 mos)  -- Which supposedly is very "doable" esp. after the AC--

At this point I am leaning towards the AC T,,, ny start date not picked but late Nov/ early Dec.

my2boys

Hi mattscot

I am also using MSKettering.  They recommended the AC T dose dense to me as well.  I felt strongly about not wanting the AC and they didn't object ot switching me to TCH.  I have my 2nd treatment next week. 

What you are saying about east vs. west is correct.  In doing my research and obtaining other opinions I have found that on the west coast AC is not widely used.  In my case, the second opinion I obtained was from a local oncologist and he only uses TCH.  He felt that this was best for me.

What's important is that you pick a treatment that you are comfortable with whether it be AC T or TCH, this way you won't second guess yourself.  Best of luck to you.  MSK has a great reputation and I am very happy with them.

plakatakr

I had #3 today. They added Herceptin this time. 5 1/2 hrs worth. I may get a fever in the first 24 hrs, so, I wait and see. I'm on my steroid high at the moment waiting for the wonderful SE's. I spoke with the chemo nurse and she agreed with the onc that even though I will have Herceptin for a year, my veins are good so...no port. I have mixed feelings about it.

I hope everyone did well with their treatments this week

cathie23

I terrillee , Im having my 3rd AC treatment tomorrow ( have to have 4) then 12 weekly of Taxol and Herceptian, bit worried about herceptain damaging my heart Im having an echocardiogram on thursday. I have Chemo on a monday then the week off work to get over it I take multi vitimins drink heaps of water and walk ( no matter how bad I feel ) 5kms every morning. Couldnt do this without family and friends I hope Taxol is easier hate the sick feeling from AC

i live in australia so didnt get the the show LIFETIME maybe Ill try and download off internet.

strongmom37

I wish I had the energy to walk everyday still. Kudos to you cathie. I was in the best shape of my life before I got diagnosed in August and I have not exercised since the day before my surgery 9/9 I feel like such a lazy butt. I have my 3rd AC tomorrow. I had an extended brake due to rescheduling my chemo for Thanksgiving. So I have had 4 extra days this break. Not looking forward to the SE, but I will be able to enjoy eating on Thanksgiving now. I have a cold that I caught from my kids that just won't go away. Hopefully my blood work will be ok in the am so I can still have treatment.

ango74

I also wish I could walk everyday. I am pretty much down for about a week to a week and a half after tx.  I do try to get in as much exercise as I can the week before the next tx.  My next tx (4th) was suppose to be the friday after Thanksgiving but they are closed so I have to do it the Wed before Thanksgiving Oh well, another one out of the way.  The last time I was at the doctors office a group of us were talking about SE's and almost all of them were complaining about weight gain during chemo.  Is anyone putting on weight?  I've lost about 10 lbs.  but even the doctor told me at the beggining of this that I might put on a little weight. I just can't eat, I've been forcing myself but it's not easy.

Take care.

plakatakr

My weight yoyo's as much as 10 lbs between rounds. I get back down and then it starts all over again!

Mocity

I also am trying to get the energy to walk or get some exercise.  Right now I am so preoccupied with my hair falling out that I hate to go sweat.  Stupid I know.  They told me to expect my hair to come out this week or next.  I am doing the weekly regimen.  My third treatment will be this Thursday.  All the anxiety of each step is almost to much to bear.  I felt ok when I got up this morning but now after a full day at the office I am pooped and walking sounds miserable.  I am also scared of gaining weight.  I already wasn't happy with my weight.  However, they are telling me most of it would be fluids and that it will reduce once treatment is done.   I put a positive post on my carepage earlier and now feel like negative Nelly.  Take care all, Cristl

ango74

I've been up and down with my weight too but I've had an overall loose which is okay but I just wish I was losing it another way.  I figure once I'm done with the TCHA the weight will come back. 

Cristl, most of my hair, like 80% of it came out by my second treatment.  I am every 3 weeks.  Now, the weirdest thing is the 20% that didn't fall out is growing and is about 1/2 an inch long and I swear I can see new growth.  I knew all my hair wouldn't fall out but I didn't expect what was left to keep growing.

kimmysue

Hi ladies,

First treatment of TCytoxinH my weight went down 10 lbs. Next treatment I was up to my normal weight. Just weighed myself this morning and I weigh the same as I did when I started. Was hoping to loose more as I am about 20 lbs. overweight. I am trying to walk every day.

Did anyone get Nexium for a sour stomach? My onco. gave it to me this time and it really helped me... otherwise when I ate my stomach would get really upset.

80% of my hair is out. I am not going to shave it. I like having some hair under my wig as it makes my wig look even more realisitic.

ango74

KimmySue,

I got Nexium and it was a great help. I was also having bad heart burn and it really helped.

tbird57

Hi Angie,

I've gained about 15 lbs since starting chemo - I've completed 3 of 4 tx so far.  It's really a bummer and my face looks like the moon to me, particularly with the sparse hair on my head.  My husband was trying to describe my hair to his mother, and he said, "remember Fire Marshall Bill" on the show In Living Color?  That's what it looks like.  Thanks, honey.  lol

I haven't shaved my head, either -- just cut it really short -- and it seems to have stopped falling out for now.  It's probably around the 80-90% range that's gone.  Haven't noticed anything starting to grow, though.  And it's really a different texture, too, dry, like straw.

Mocity

Arg!  I hope I don't gain.... I needed to lose in the first place.

I had my 3rd treatment today.... took about 4 hours.  I am dreading tonight as I can't sleep because of the decadron and have to work a full busy day at the office tomorrow.

I am going weekly.  Now, just playing the waiting game for the hair to fall out.  So scary.

My side effects haven't been too bad... mainly tired and fatigued... I feel like I am getting over the flu or something.  My joints ache at night.  Who knows.  I think it will build up and get worse with each treatment but maybe not. 

Take care everyone, Cristl

mattscot

hi I just wanted to check in ... I have a start date of 12/12....

my original rec was AC T H ... and then I received an Oncotype score of 16 (10% reaccurence) with a finding of Her-  ..... (contra to my FISH of 2.3)   ... As Oncotype is just starting to test Her2 status this is a pretty new issue..    If not for my Her2 questionable status I could go chemo free.. but it is too much of a gray zone and I will be treated as Her2 positive... 

Now my treatment will be Taxotere, Cytoxan + Herceptin every 3 weeks 4x 

Going wig shopping this weekend

Hang in there

my2boys

Good Morning Ladies.....just wanted to stop in and give you all a "hello".  I completed my 2nd round of TCH on Wednesday and I'm on my downswing right now.  I've felt better, but I've also felt much worse, so no major complaints here other than fatigue and dry mouth with some stomach/intestinal grumblings going on.  I'm hoping that this is the worst of it.  I know that there are a few more days until I begin to feel better.  Don't ya just hate this tasteless mouth thing?  My hair is coming out by the handfuls now......this is a very emotional and sad thing for me. 

Looking forward to feeling much better by Thanksgiving.  Stay strong everyone.

lfasano44

my2boys: I am right there with you, had my 5th tx on Wed too and feeling pretty yuck today.  I know the week will get better. Sorry about your hair, it is so hard. Happy Thanksgiving everyone. Lauren

kimmysue

Hi ladies,

On day 11 af Chemo # 2. Feel much better now...always do around day 8. I am having light bloody nose bleeds when I blow my nose. It is very dry here in Colorado and that doesn't help.

Anyway...

CrystlC...My hair started to fall out with a light shedding. A few days later I would rub my fingers through it and it came out in handfuls. I am used the nuclear fallout victim look now. I am glad I am done shedding all over the place. You will get used to yourself being bald.

MattScot... I have a similar diagnosis as you. They never told me I could not have chemo. What is ILC? Did your onco. say it is because of your 0 node status or age? Why did your onco pick TCH? TCH has been very manageable for me. I really don't even feel tired. Just upset stomach through day 8. I have a blog you can visit which list my day by day side effects. Not as bad as I thought in my mind.

My2Boys... I do hate the tasteless mouth thing. I just started to notice it this treatment. I will eat and can't taste a thing. The hair loss can be pretty strange and first but I am used to it now. Your sadness will pass and you will just accept it like everything else we are going through.

Can't wait until Thanksgiving I just hope I can taste the deep fried turkey!

Happy Thanksgiving ladies!

With much love,

Kim

mattscot

Hi Kimmy sue,

 no one reccomended  I could go forward without chemo... however If I did not have the FISH and went with the oncotype dx alone that determined I was Her- ... that would have been a strong option based on the test results.  ILC is invasive lobular... I am pleolithic ilc which tends to be rarer type of ilc (I have read that there is a link with BRCA 2 which I tested positive for)

My onc decided on TCH due to positive studies.both with Her+ and Her- (just TC) and his feeling that given my situation (borderline or possible Her- )he did not think the AC cardiac toxicity issues for me were warranted.

I would like to read your blog thanks (how  do I do that?)

lfasano44

Positive story from Her-2 website that I thought I would share - There is a great update on her at the end!!!! Hi everybody, I just wanted to say that four years ago today I was diagnosed with a high-risk breast cancer: er-, pr-, her2+, eight out of 19 nodes after pre-surgery chemo. Oh, and I had been diagnosed six months after having had a baby, which is also a very bad thing in terms of survival. The member of the surgical team tasked with giving me my results was optimistic until he realised that I had already had chemo (FEC which is good, but failed for me). When my husband asked my prognosis, the surgeon evaded the question and I didn't want to know anyway, since I knew the odds were dire. The only optimistic thing one nurse could think to say to me was that breast cancers as aggressive as mine always came back fast, so I would know sooner rather than later whether the treatment had worked! She mentioned that I might live to see my one-year old start school if I got on the herceptin trial, only to announce soon after that that trial was closed. Children start school at 4 in Britain, so I was devastated. Trying to keep optimistic, I once pointed out to my oncologist that at least I had a grade two cancer, only to have him respond back that my cancer was a grade two but it acted like a grade 3. Fortunately after I had surgery my oncologist gave me taxotere, which was unusual in Britain at the time. I also started saving my money to go anywhere where there was an approved anti-her2 vaccine (which I optimistically thought would come out very soon), but it meant at least when the Hera results came out I had the funds to start late herceptin. Four years on, I am still around despite the odds, with no sign that the cancer has come back. Because I had to go back into treatment late and became very tired on herceptin, I am just now getting everything back into order, but am doing well. Of course, when I started my treatment back in October 2003 so much less was known about how to treat this type of cancer. I am amazed by the progress that has happened in the last four years. I hope that you have found this story encouraging.

Hi folks,

Just wanted to say that it is now five years and I am still fine. I couldn't figure out how to edit the message line. Oh well.

Glad to hear that so many people have found it useful, both here and through private messages. It is always nice to know that my story has given someone hope.

I can't believe how far treatment has come in that time. My oncologist was great but I had to leap through so many hoops to get a half way decent treatment because so little was known about the proper way to treat this. I am so glad that things are much more straightforward and effective now for patients with primary her2-positive breast cancer.

kimmysue

Hi Mattscott,

My blog is kimscancerblog.blogspot.com

It gives day to day side effects for chemo as well as some other stuff.

I hope it helps!

Kim

tbird57

lfasano44, thanks for the great story.  How hopeful!  

LuvLafLern

That is a great story. I always appreciate reading/hearing things like that. Thank you for posting it.

Sorry I've been away - trying to sort out business sale and get my life back together. I had my 10th treatment on Tuesday this week. Two more of this, Herceptin and Taxol, then two weeks off (comes right at Christmas - sweet!). If all goes well I should start FEC+Herceptin on December 30 for a 3-month run.

The only real side effect I've had that's been a problem is mouth and throat sores. They seem to come in large groups and stay forever. Otherwise, it's been great. I've had a bit of hot-flashing, hair loss (of course) and weight fluctuating, but nothing horrible. I'll admit, I'm a little nervous about the FEC. Has anyone else had this protocol? What were your effects?

I'm in a trial for this treatment. I'm hoping to help them prove that this treatment is preferable and doesn't cause bad heart problems.

Just so you know, I'm praying for you all.

Much love,
Anna

ango74

That is an inspiring story. I needed to read that, I have been feeling very down about this whole cancer thing this last week. With the holidays coming up I can't help but think...is this my last Thanksgiving, is this going to be my last Xmas. I try not to think like that but for some reason it's been a bit harder. I would normally blame it on PMS but I can't, haven't had my cycle since this thing started.  That's the only upside during chemo, I can't imagine having to deal with PMS and all the SE's from chemo, talk about cruel.

Take care.

Angie

Anonymous

Angie - are you still making a holiday trip?  I can relate to the "is this my last..."  DH doesn't understand, he's trying real hard, but just says "You have to make sure it's not".  Hard to bust his bubble.  Hope all of you are going to have a wonderful holiday!  Everyone has something to be thankful for...

kimmysue

Hi Angie and Chelli,

I too have been worrying about the cancer coming back. I just hope the chemo does its job and I can get on with my life. It is hard not to think about is this my last etc etc. Cancer does really suck sometimes. I just try to act like I don't have it and sometimes I feel normal.

I hope you guys have a great Thanksgiving. I know I am thankful for this board. It brings me great comfort that others are feeling the same way I do. We will all get through this.

my2boys

Hi Everyone.....and Happy Thanksgiving to you all.  Still waiting for my upswing.....patiently waiting.  It's only day 8 so hopefully I will begin to feel better soon.  Last time I didn't feel better until about day 10. 

A helpful hint for the tasteless mouth thing.....gatorade.  I sip it all day long and it stimulates the taste buds.  For those of you desperate to taste ANYTHING, I would recommend you try it.  I did notice that the taste buds came back to life after the last treatment at around day 11, so hopefully we will be tasting our turkeys tomorrow. 

Thank you all for the words of encouragement about the hair loss.  I contacted my hairdresser and she is meeting me on Saturday morning before the salon opens to shave my head.  I think that this is probably the best way to get on with my life and stop worrying about my hair.  I've already gone through 2 lint brushes.....what a mess!

I think that the worrying about the cancer coming back is something that we will all feel for a while after treatment.  In speaking with other survivors I am told that the longer you go without a recurrence, the less you think about it. 

When you are feeling crummy from a round of chemo, just remember that you are doing everything in your power to NEVER have a recurrence...this is what helps me through those long nights.  Hang tough ladies....this is a rough patch in our very long lives and we will pull through.

God Bless you all....always.

Anne

ango74

Chelli-we were thinking about coming up but I was suppose to get chemo on Friday but they moved it to today so we are staying close to home. Plus our 3 yr old is really going through a terrible 3 stage, REALLY TERRIBLE. I think an 8 hr car ride with him right now might put me over the edge.

Today was my 4th out of 6 TCHA treatments.  Only 2 more of the rough stuff, yeah!!! My spirits are a little lifted today. I hope everyone has a SE free Thanksgiving!

Angie