HER2/NEU Positive - Hormone Negative Receptor

ladyblueey · New User Joined: 31 Oct 2006 Posts: 3

PostPosted: Mon Nov 06, 2006 10:43 am Post subject: Hormone Negative Receptor.....HER2/Neu Positive Reply with quote Edit/Delete this post Delete this post
[color=darkblue][/color]I need some information. I just recently found out my Mother has breast CA. She is hormone negative, but HER2 positive. It's been about 6 weeks since she had a mastectomy and 8/14 lymph nodes were positive. We were told that they had gotten everything. Now the PET/CT scan shows to nodes under her subclavicle area on the right side. They have started her on regiment of Herceptin and Taxatear (not sure of spelling). One treatment a week for 3 weeks, off a week, then one treatment a week for 3 weeks, off a week, and another 3 sessions, offe a week. Then she's to have another PET/CT scan.

I'm interested in knowing the following:
1. Success in HERCEPTIN against the HER2/NEU.
2. Survial rate for HER2/NEU
3. Actual testimonies of people with HER2/NEU
4. Herceptin and hair loss.

I am the primary care giver, and I have read and done research, but I would feel better talking to someon that has already been through this.
I just feel so helpless and I want to give my Mom the best that I can give her or make availabe to her.

Please help me....

mssue · Posted: Wed Nov 15, 2006 8:16 am Post subject: Re: her2nu

Hi Honey,

I am sorry to her of your Mother.Although mine (cancer)was caught earlier,I recieved Adriamycin and Cytoxan.I didn't get the Herceptin. It wasn't until I had finished everything that the FDA,Doctors or who ever realized or passed the use of Herceptin, in patients with earlydiagnoses & her2nu positive. My harmone receptors were negative also.As by reading my log at the bottom you see mine was caught alot earlier than your Mothers but that is not to say that they can't help her because soooo many studies and trials have been done to this date,that there is so much more hope out there.

And yes , I think the main point of the Herceptin is to reduce the chances of reoccurence. They all have thier side effects ,I lost my hair too, even when You prepare yourself for that one it is or can be very emotional,as it begins to happen alot of people go on and shave it off or trim it real short so that it's not as devastating,but have a wig or scarves or hats ready in the event it does happen and the Doctors or Nurses will be able to tell you if this is a side effect of this medicine.Actually You can look it up yourself if you haven't already done so.
I don't know if any of this helps. I noticed the date on your post I don't check in often enough I suppose.I am sorry it has taken this long for someone to get back to you.Usually the Ladies here(including myself) are right there,please forgive us.

Being a care giver can be really tough,but your Mother is very fortunate to have your support and care while she goes through what I'm sure is the biggest challenge of her life.Loving Daughters,may we all be so lucky to have at least one.God Bless You and your Mom!

{{{{BIG HUGS}}}}
_________________
Sue
Age-44
DX-8/29/2003
Stage 1 - ER/PR-,HER2-NU+
Infilterating Ductal Carcinoma
Modified Radical Mastectomy/Left-side
4 Rounds of A/C-completed 1/2004

ladyblueey · New User Joined: 31 Oct 2006 Posts: 3

Thanks so much for your reply. I do appreciate it so very much. I know it's a big concern to her already, about losing her hair. We have gotten 2 wigs and serval hats, so we have the bases covered.

I'm worried, because she seems to get depressed a lot.

When you were going through treatments:
1) How long before you hair fell out? (she's on treatment 3)
2) How long before you white cell count dropped?
3) Did they limit you on where you could go? (They said to be carful of crowded places, because of germs) (She loves to go to BINGO)
4) How long before you drove? (It's been 8 weeks and she won't drive)
5) Did you feel trapped to your home? (she says she does, because of the treatments, that she can't go anywhere, because of germs)
6) How long after treatments before your hair started growning back?

I appreciate you taking the time to talk to me. I pray God's blessings on you for your help.

Barbara

mssue · Posted: Wed Nov 15, 2006 4:30 pm Post subject: Re: her2nu

Hi Barbara,

I am not sure if I can answer all of your questions but I'll try.

1 - You said she is on her 3rd treatment,it really depends on the combination of drugs they are using and everyone is different.My treatments were every three weeks.My hair started coming out around the time for my 2nd treatment.
2 & 3 - There is a thing called a Nadir (sp) period,usually around the second week after the treatment(really depends on the chemo recieved)the white blood counts can drop making you more subseptable to infection.If the counts to get too far out of range they may need to give her something like Neulasta to bring the counts up in order to continue treatments.I had the Neulasta twice it can cause alot of bone pain-but it is doable.
4 - I never stop driving(like I said though mine were every 3 wks)
5 - I never felt trapped - to me it was more like a safe haven- a good place to rest-and believe me -she'll need alot of that. I was told that during my Nadir period too stay away from crowds,but that if I had to go out use a face mask ,you know the paper ones or a scarf to cover the mouth and nose.Tell her to keep her hands wash ,that is how alot of germs are passed,going into market places and such really are full of germs ,it's better to be safe than sorry. If you get sick while going through treatments it can get serious fast because your immune system is down .Be cautious please ,and if food seems to have a metallic taste switch to plastic wear.
6 - My hair was slow to come back,it actually had little spurts of growth here and there through treatments,but it felt different.My scalp stayed tender for quite some time and it was hard to keep my head warm -it was winter time.You loose alot of heat out the top of your head ya know,I started sleeping in hats because I couldn't stand sleeping with the covers over my head LOL!

Try to stay level headed,worrying doesn't really accomplish anything and only makes you feel worse.Start looking at the positive side of things to pull you up out of depression,not that there aren't going to be days that you want to cry,yell, be mad or sad and that's ok,we have to get it out of our systems,it's part of the baggage you get with the disease-so vent get rid of it-But on most days please focus on positives or things that make you happy - get out take a walk - visit a friend - go shopping- sometimes anything to get your mind away from the sickness.We have to nourish our bodies and our minds to get through this and that goes for care givers too!

Sorry it ended up so long -sometimes I do go on....
Take care and God Bless You !
{{{HUGS}}}
_________________
Sue
Age-44
DX-8/29/2003
Stage 1 - ER/PR-,HER2-NU+
Infilterating Ductal Carcinoma
Modified Radical Mastectomy/Left-side
4 Rounds of A/C-completed 1/2004

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