newbie

[carstell]

I have been to other websites. This is my first time here. I haven't seen a lot of women with Her2/neu+ ILC. Is this uncommon or am I just not seeing others?

[Jean]

carstell,
Welcome to our site and I am sorry that you have a need to find us.
But - you have found a wonderful site with lots of information and support. This site is geared for the men and women who are Her2 positive.

What type of chemo are you starting on the 8th?
You may want to wear very comfy and warm clothing that is layered to the treatment center since most are cool and treatment (especially the first day can be long).
Eat a small meal prior - Do Not go on an empty stomach. Somthing light,
but healthy with protein.
Also, take a snack with you (some centers do offer small snacks) like a yogurt and apple or sandwich.
Drink fluids to flush your system (don't have to drown yourself) but
do have at least 4 glasses.
Take something nice to read (you can also just nap) a good book, or anything that can keep you busy since you will have time to pass.
Buy and use a new tooth brush - since your inmune system will be lowered and you don't want to upset your gums with any lingering germs from your old tooth brush.
Do not use any mouth washs with alcohol
DO not allow anyone to visit you who has a cold etc.
Do not have manicures /or/pedicures while going through chemo (you want to protect yourself from infections)
No dental work unless it is an emergency
Make sure to ask your Dr. if you can take supplements during chemo
Elevate your legs at night to help relieve any leg cramps that may develop
Some of the woman have heart burn from the chemo (I did) Prilosec
which can be purchased over the counter worked great, but you do need
to allow time for it to kick in 24-48 hrs.
Can't think of anything else right now, but if you have any questions
just reach out....
Wishing you the best,
Hugs,
Jean




Wishing you all the best on your first treatment.

[Jean]

carstell,
Welcome to our site and I am sorry that you have a need to find us.
But - you have found a wonderful site with lots of information and support. This site is geared for the men and women who are Her2 positive.

What type of chemo are you starting on the 8th?
You may want to wear very comfy and warm clothing that is layered to the treatment center since most are cool and treatment (especially the first day can be long).
Eat a small meal prior - Do Not go on an empty stomach. Somthing light,
but healthy with protein.
Also, take a snack with you (some centers do offer small snacks) like a yogurt and apple or sandwich.
Drink fluids to flush your system (don't have to drown yourself) but
do have at least 4 glasses.
Take something nice to read (you can also just nap) a good book, or anything that can keep you busy since you will have time to pass.
Buy and use a new tooth brush - since your inmune system will be lowered and you don't want to upset your gums with any lingering germs from your old tooth brush.
Do not use any mouth washs with alcohol
DO not allow anyone to visit you who has a cold etc.
Do not have manicures /or/pedicures while going through chemo (you want to protect yourself from infections)
No dental work unless it is an emergency
Make sure to ask your Dr. if you can take supplements during chemo
Elevate your legs at night to help relieve any leg cramps that may develop
Some of the woman have heart burn from the chemo (I did) Prilosec
which can be purchased over the counter worked great, but you do need
to allow time for it to kick in 24-48 hrs.
Can't think of anything else right now, but if you have any questions
just reach out....
Wishing you the best,
Hugs,
Jean




Wishing you all the best on your first treatment.

[suzan w]

Hi Carstell,
Yes, welcome to the site! This site has been a wealth of info for me, and a good place to come for support. The main message board has many answers to most of your questions...ask away!!! You are right about lobular carcinoma and Her2+, it is not a common combination, but there are several of us here. Let us know how the chemo goes, Jean has given you a great list of helpful hints. I found that the more hydrated I was going in to the treatments, the better, it was hard to hydrate after!!! And the most important bit of advice is to take all the anti-nausea meds BEFORE the side effects hit!!! Very hard to play catch up!!! Best of luck and hope to hear from you again soon!!! Suzan

[Mary Anne in TX]

Best wishes Carstell on your treatment plan! Let us hear from you!

[carstell]

Thanks guys,
For now I am scheduled for 4 A/C every other week. then Taxol weekly for 4 doses.Then Herceptin IV every 3 weeks to finish out the year.Also Tamoxifin for 5 years. Sound about right? I have stocked up on the staples and done as much cleaning as I am going to!We are suposed to get 8-10 inches of snow tonight, so I am going to hibernate with the family.

[Bill]

Hello Carstell! Welcome to the site, but as the saying goes, sorry you have to be here, but you have come to an awesome group of mighty BC warriors. This is a great family to come to for answers, support, information, venting, whining, whatever, etc. It really is one big family. Once you join "the Family", there's no turning back, lol. We will pray for you and worry about you, and think of you often, whether you want us to or not. I can't add much to what Jean and the other sisters have stated, other than it may be helpful to start a journal or notebook and keep it with you at all times to jot down questions, etc. for your docs. They can come at any time and you often forget them at the appointment. Try to have the same person go with you to each treatment and drs. app'ts. if possible, I know that's tough, but it helps clarify? things and overall support, if that makes sense. It's important to have your caregiver(s) eat well and rest and stay strong as well so that they can take care of you. Like a good friend once said to me, "you know, Bill, a bicycle is just a piece of junk if it's only got one good wheel". You keep on rolling, Carstell. Warm thoughts and prayers to you, Bill

[mts]

Carstell,

Welcome and sorry at the same time... like other posts said- you came to the right place.
I just wanted to add to Jean's post about things to watch and be prepared for. Constipation... usually over the counter stuff works well- but be careful what you eat...
Also, hair- it will begin to fall out within 2 weeks of first treatment. So be prepared for that as well. The side effects are tolerable and doable. Otherwise none of us would be here to talk about it.
I worked full time throughout my chemo--- of course I had bad days and what usually worked for me was to take the chemo on Thursdays. By Friday I was beginning to feel it and by Saturday I would stay in bed until Sunday and get going again on Monday. After 5 days I was OK and I would have a week to recuperate... then do it all over again.
The one thing that you will realize is that bc treatment will take an entire year of your life. But well worth the effort. Hang in there...

Maria

[carstell]

I think I am as ready as I am going to get. I have gotten such incredible advise. I also know that the experience is different for everyone. I am thankful for the helpful hints. We have a snow day here in Madison. No school. It's a good distraction.I should be able to pick up my wig tomorrow then Istart my A/C on Friday.The oncologist doesn't want me to work, due to risk of infection. I am a pediatric ICU nurse. He told me to expect to be off work for 5 months. Thank goodness for Netflix!!

[mts]

Sounds like you are prepped for launch !

Best of luck to you ... Keep us posted !

Warmly,

Maria

[Jean]

Carstell,
Thinking of you and wishing you all the best for Friday....
I am certain you will get through the day with flying colors.
Please let us know how you are.

Kind Regards,
Jean

[carstell]

HI all, Got through my first round of A/C pretty well.I go tomorrow for #2. My biggest issue has been my port.The lab person that first accessed it, Infilltrated it. Caused a huge hematoma (blood collection) Haven't been able to access it since except by radiologist under xray. My surgeon wants to give it a break and see if the hematoma resolves. I will get the chemo peripherally tomorrow. Hopefully, By my next round they will be able to use it! Cheryl

[dreen]

Hi guys

I too am newly diagnosed with breast cancer. My left breast began being ultra-sensitive around Christmas - I was going to write it off as hormone changes since I am 49, but decided to get into primary care dr at first opportunity which was January 2. There are no lumps - just tingling & sensativity.

I didn't say anything to my family (except my husband) since my sister-in-law passed of breast cancer a year earlier - my family is all still ultra-sensitive about it.

My dr scheduled me for mammogram (the center couldn't/wouldn't schedule me until January 22) and referred me to a surgeon for an ultrasound. This told me he suspected breast cancer. The following week the surgeon did ultrasound my left breast and decided to do 4 needle biopsies of suspicious shadows. The biopsies came back benign. He wasn't convinced either.

I decided I best tell the family and give them time to adjust to the possibilities. We waited for the mammogram center appointment. The mammogram showed calcifications in the left breast. They scheduled me at a breast center where I spent about 4 hours with a radiologist and her team having multiple mammograms, ultrasounds, and a variety of biopsies of different sorts a few days later. The biopsies came back positive on January 24 - one of these is in the lymph node. After MRI they did more biopsies - this time on right breast. These did come back benign.

We have had such a mad rush of a myraid of appointments - oncologist, plastic surgeon, physical therapist, chemo training class, MRI - MUGA - PET scan - port installation. It was almost a relief to get to my first chemo session so we had a chance to catch our breaths. It is overwhelming. IThe good news is the hormone receptor test is negative and the PET scan showed no other signs of cancer. I am still learning diagnosis, how to read the path reports, how to cope with my own symptoms, etc. At this point, I can't really tell you what phase I am - I suspect IV - or much else. I know I have outstanding physicians and a good attitude. If I had any doubts about being loved, they have been banished.

I had my first chemo on February 11. I am doing 12 weeks - 4 sessions - of chemo for first round. They have me on 5FU and Herceptin. Following this I will have mastectomy (probably in May). I want to have bilateral because I prefer not to have my family deal with this again. I pray the insurance will cover the right mastectomy since it came back benign. Following surgery, I will begin another 12 weeks of chemo and finally radiation. Then, I will begin reconstruction. How cool. Pert,new knockers that won't be sagging toward my belly button at my age!

Amazing. I am still working, but for me the fatigue is worse than other side effects at this point. I have cut myself back to 6 hour days and take the unheard of - NAPS!

The most amazing things happen. You meet great new people you probably wouldn't have crossed paths with before. You also find out exactly how much you are loved by your own family and friends. How cool is that. The "caretaker" is being babied.

One of the coolest things to come out of this is my daughter and I went to have tattoos (before chemo of course). Another bonding session. Every time she has a problem and tells me about it I console her with "This too shall pass" We both had my "motto" tattooed on our feet. Mine is on my right foot placed beneath my toes where I can read it as a visual reminder that this too is temporary.

Keep me in your thoughts. I am willing to offer whatever encouragement I can to whomever needs it!

[Bill]

But as we say here, sorry you had to come here, but you have come to a great source of information and support. It sounds like you have a great outlook and a positive attitude. That will carry you a very long way on this journey. I love your picture! Please know that you will be in our thoughts and prayers. Keep us posted. Love and prayers to you and your family, Bill

[hutchibk]

Hi Carstell and Dreen!! Welcome to one of the most powerful tools you will ever find on your new journey! This is an amazing group of people, and we will share our info and experiences and support you with as much updated info as we can get our hands on... your job is to be as healthy as you possible can while you get through your treatments, ask lots and lots of questions, (of us and of your doctors), and just know that you will eventually get used to something that we call "the new normal" - don't even ask. You will just know it when it happens, LOL...