Herceptin ? One year?

Tammy65

I have yet to meet with my oncologist....I am reading things here that say some of you have been or are going to be on Herceptin for a year? wow.....once a week?

I didn't realize it would be that long.

I am triple positive....so i'm sure I will be getting herceptin, yes?

if you end the other chemo, and continue with just the herceptin, does your hair start to grow back before the Herceptin year is ended?

thanks for any comments and thoughts...

Tammy  

sheila888

Dear Tammy

Yes your hair will grow during Herceptin.

Some women are doing the every 3 weeks regimen.

I can tell you from my own experience i used to walk to get my Herceptin and walk back home.

you'll do just fine.

Tammy65

Thank you Sheila, appreciate your response......is the Herceptin not as abrasive as the other types of treatments?  it doesn't zap your energy as much?

Scrabblelady

Tami,

  My chemo was 4 doses of Adriamycin ^ Cytoxan every   3 weeks.  Then 12 weekly doses of Taxol & herceptin.( only 3 more to go, hurray!)  Then I'll get Herceptin every 3 weeks for nine months.   The standard is Herceptin for a total of 12 months.  It will depend on your onc on how he /she wants to prescribe it.  I have not had any side effects from the Herceptin.

Tammy65

Hi Scrabblelady!

Do you have a port for your chemo? do you get the herceptin in the port?

just wondering now about how long i will have to have port...i'm assuming til the herceptin is finished......thank you for the info....

Tammy  

sheila888

Tammy...I did have a port which was a life saver. Yes Herceptin goes directly to your port and its a short infusion if you are getting once a week. Like 45 minutes

Didn't have ant SE from Herceptin.

i kept my port more than a year (my Choice).

I also did 4X A/C and 4X Taxol.

PS I will post the limits as a newbie how many times you can post.

sheila888

ALL NEWCOMERS ARE ALLOWED  5 POSTS IN 24 HOUR PERIOD UNTIL THEY REACH 50 POSTS.

YOU HAVE UNLIMITED PRIVATE MESSAGE POSTINGS BY CLICKING ON THE PERSON'S NAME YOU WANT TO COMMUNICATE.

JUST FOLLOW INSTRUCTIONS WHEN THE NEW PAGE OPENS UP.

I HOPE THIS WILL HELP ALL THE NEWBIES.

SHEILA

Tammy65

is your immune system still compromised while just on the herceptin, after the other chemo stops?

sheila888

Herceptin is a maintenance drug not a chemo.

Thats what my oncology nurse told me.

tougherthanithought

Tammy, Herceptin is a breeze, especially with a port. For me, really no noticable SE's

coonie

Hi Tammy

I agree with the other ladies. Herceptin doesn't have near the side effects that chemo has. I did Herceptin for 1 year and went every 3 weeks. My hair started growing back after I finished chemo. I wore hats, and 3 months to the day that I ended chemo, I had enough hair to go without a covering:) That was in June.......very very not here........and I was soooooooo happy.

Good luck!!!!

oh...p.s.......had my port removed about 2 weeks after my last Herceptin. That was a good day too:)

Tammy65

Thank you all so much for the info, i'm trying to figure out what I am going to be facing...thank you!

Do you have to have anesthesia to have the port removed? I had mine put in when i had my breast surgery..... 

elmcity69

Hi tammy,

I had my port placed under twilight sedation - I don't remember anything, actually.

I have my last Herceptin treatment in two weeks. Herceptin tx is a breeze compared to the other stuff - only the pesky MUGA scans get tiresome, but that's only every 3 months.

This medication is a lifesaver! Trust me: the year goes so quickly. I know you're feeling overwhelmed and that's natural. YOU CAN DO IT!

hugs--

janyce

Scrabblelady

I was told by my onc that  port  removal is a lot easier and does not require general anesthesia,   Herceptin does not affect your blood count as it is not a chemo drug.  Due to possible, but uncommon, cardio side effects, you should get an echocadiogram or MUGA scan before you start Herceptin and every 3 months while on the drug.  In a small percentage of patients it can affect the pumping action of your heart.  According to studies, the damage is reversible after Herceptin is stopped.

  As for my port, Although I love the convenience of it, I can't wait to have itremoved.  Just my own hang-up about having a foreign object in my body.  It did take about 6 weeks before I felt completely comfortable with it and could sleep on that side.  When you go for your treatments, you can get a prescription cream to put over the port are which numbs the skin.  I used the cream a few times, but now I just let the nurse use the numbing spray at the treatment center.

  Overall, I have had very manageable side effects from chemo.  The pre-meds worked wonders and I never felt nauseous.  I would be slightly constipated the first 3  days, had the metal-mouth taste for about 50 % of the time, took naps most days, especially after the second, third & fourth treatments.   My best advice is to keep hydrated- drink, drink, drink, especialy the first 3-4 days.  It helps to flush the drugs out.  Also, eat something every 2 hours to keep food in your stomach.

  With 2 weeks to go, I still have horrible taste buds.  Noting tastes the same.  And my nose drips, drips, drips.  But a I said,  it's manageable.  I hope your treatment goes as well, if not better.

.

lago

Count me in as another herceptin every 3 weeks. I just finished my last chemo (6 tx of THC) over 2 weeks ago. I do have a port.

Tammy65  There is a triple positive thread you may want to check out:

TRIPLE POSITIVE GROUP 
http://community.breastcancer.org/forum/80/topic/764183?page=1

Also

Triple Positivers/Chemo regimens and experiences
http://community.breastcancer.org/forum/6/topic/755759?page=1
 

Sassa

The area was just numbed with an injection before the port was removed. All I felt was some pressure as the surgeon had to push down and turn (Child-proof lock? =-D) while removing the port.

Tammy65

Thank you all so much for all of the information. I think a lot of the *scary stuff* is not knowing. I am in the process of setting up appt with my oncologist to get all my information....and I thank you all for the information you have given me, it helps so much to know others are going thru this and it all works out in the end....and it probably isn't as hard or as scary as I think it is going to be...(that is my hope anyways!)

When you get the herceptin every week, do you get the *other* chemo stuff with it every week, or is that just every third week?

My biggest fear is being nauseas and throwing up.! I have been seeing a counselor and talked to her about that, I know it is irrational, but I have always had this fear.  I hate it.  

Thanks again Ladies, it all helps so much !

Tammy  

Tammy65

THank you Lago for the links to the triple positive threads!

Letlet

Tammy I was on EC every other week for 4 doses then went to Taxol every 2 weeks for 4 doses but had Herceptin weekly while I was on Taxol. I just finished my last Taxol last Thursday, my onc wants me to get Herceptin this week then will shift to the every 3 weeks after that. Hope that wasn't confusing.

Tammy65

Thank  you Letlet, no it wasn't confusing, I'm trying to learn how this all works and that helps a lot, thank you.....

I imagine everyone is individual in their treatment, but seems like a lot of people have the same time frame of things...so I'm just trying to figure out some things, waiting for my oncologist office to call me with my first appt....to go over all of that....

thank you, congrats on being finished with the Taxol!  I would imagine you are happy that part is over, at least.....best wishes.....Tammy 

cathybudd7

Hello friends,  I am new to all of this.  Had bi-lateral mastectomy Dec 7th. Now receiving herceptin, taxatere,and carbo platin via a port.  Getting 2nd treatment 1/22/11 I have had a very itchy rash and stomach problems.  One being a lot of gas and diarrhea.You all have given me hope and good ideas.  Like drinking lots and lots of fluids.  Water is hard because of the taste.  I add crystal light to water bottles.  I also have goody bags.  Hard candy to suck on.  All different flavors.Any thoughts on what to do for gas? thank you, Cathy

cbm

Cathy--the gas and diarrhea may be from the Crystal Light--I have that reaction to aspartame in volume.  

Tammy65--Yes, Herceptin does compromise your immune system but not to the extent the harsher chemo does.  You may also get a drippy nose.  Yucky, but very manageable.

Good luck to both of you!

Cathy 

Edited to add, of course the gas and diarrhea can be from the chemo also.  They can give you meds for that, and you should talk to the onc nurse about it. 

pgw

Tammy65

I took Herceptin along with all my chemo...finished chemo oct 12 but still get Herceptin every 3 weeks for a total of 1 year.  My hair started to grow back about 1 month after my chemo was done.  Good luck

lago

Tammy65 I had my herceptin every three weeks with my chemo but this is not the same for everyone. You will have to see what your onc recommends.

BTW not everyone gets the same side effects. I am done with chemo (still doing herceptin). I never had any nausea and although I did get tired at the end of the day I never had the extreme fatigue. Even if you do have nausea they have drugs to manage that. I have a drawful that I never used!

VickiSam

I did have several side efforts with Herceptin, alltho they lessen as my herceptin chemo went on.   My hair did grow back .. and I went in once, every 3 weeks. I almost felt, like a normal person who was able to live life, without being at my Oncologist office every Tuesday at 9:00 a.m.

My port was in for 14 months, and 1 month after herceptin completion, out came my port .. or as I refer to it .. I had my port, deported!

Vicki Sam

NanaA

I had taxol for 12 week with the herceptin along with it every 3 weeks and then continued the herceptin for a year.  I had my port out about a month after finishing the herceptin.  They even used my port for a colonoscopy and a bronchoscopy I had done during the year it was in.  I was very grateful for my port because they always have a hard time getting an IV going in my arm when I had my lumpectomy and my SNB.  The on little stick every time it went for chemo or herceptin was very minor.  The steroids during chemo were much harder to deal with than the herceptin.  I only missed one herceptin when I had a cold and did not want to expose other cancer patients to my germs.  Onc did not think I needed to make it up.  I was 2 years NED in Jan.  Wishing you good results.  Annette

Basia

I just finished with the chemo part of TCH 3 weeks ago and it's amazing how great I feel. I did my first herceptin only this week. I will be getting herceptin every three weeks until October. During chemo, I had no major SE other than diarrea the first round. I had enough energy to chase after my 4 year old twins the whole time. They didnt miss out on anything while I was getting chemo.

I am probably one of the few that despises my port so much that I am having it removed today even though I have 10 more hercerrin infusions to go.

lago

Basia I did great my 1st 3 chemos. 4 was a little tougher but 5 &6 really were the toughest because of the stiffness and messed up/hurting nail beds (I still have both issues 4.5 weeks out.) Energy wise I didn't do so badly at all. This would have been a lot easier if I only had to do 4 tx. I too have 10 more herceptins to go.

I don't know if they will use my port. Only the chemo nurses are allowed to access it so if I don't have the colonoscopy done in the same hospital I'm out of luck. Also they won't use it for injecting dye because it's not a power port. I had to really fight with the CT people to get them to use my foot. I have LE in one arm and the other is at risk (and I'm not totally convinced I don't have some stage 0 LE in that arm either)

cathybudd7

Thank you for the crystal light idea that might b my problem.  I wanted to ask if anyone has a tender area where your port is located?  My chest is still tender from that procedure. But, my most severe problem is the gas and diarrhea.  It starts only after I eat anything.  I am not nauseated and I thank GOD for that! I will tell my onc. this Tues about gas and diarrhea.  He said to take immodium for diarrhea when I called in 2 weeks ago.  That does not work. Cathy 

lago

Cathy My chemo binder says to do this with diarrhea

To limit diarrhea:
• stick to clear liquids
• avoid milk or milk products
• eat small but frequent meals
• eat foods rich in potassium (bananas, apricots, potatoes, sports drinks)
• Eat small amounts of low fiber foods
• avoid caffeine, carbonated drinks, alcohol
• avoid greasy, fried, spicy food

Low Fiber Foods
• Chicken or turkey (skinless)
• cooked refined cereals
• cottage cheese
• eggs
• fish
• noodles
• potatoes (without skin, baked or mashed)
• white bread
• rice
• asparagus
• bananas
• canned fruit like peaches, pears, applesauce
• clear fruit juice
• vegetable juice
• saltines crackers
• plain or vanilla yogurt
• gelatin

Be sure to keep drinking because you can become dehydrated with diarrhea

LindaKR

I had herceptin weekly during Chemo (TCH), now I only receive the Herceptin every third week, for the balance of the year.  Had and echo at the beginning and one after chemo, there was no change.  My hair is growing back.  I get headaches from the herceptin, but they only last a couple of days after treatment.  Nothing like being on chemo. 

Drink pleny of water during chemo - if you are receiving carboplatin it will make most things you eat or drink taste strange.  I found that if I ate a bite of plain organic yogurt before other eating and it seemed to help with the strange tastes.  Also, adding lemon slices to the water made it taste better.

Chemo wasn't nearly as bad as I thought it would be.

 God Bless you,

Linda