Sad and Scary, ANYONE HELP?

Estepp

I met my oncologist today. She was sharp and very knowledgeable. She wants to movr very fast.

She said, becasue I am having to do chemo first. I will nver know exactly my staging as the tumor will shrink and that cancer in the nodes shrink or leave) she hopes.

She said I a m Er-/Pr-/Her2+++.

3 cm Tumor in breast

1 cm tumor in biopsied node ( possitive)

and three other swollen nodes are probably cancer.

Poorly differenciated.

Nuclear grade 3

She says problaby a high stage 2 or low 3.

She is doing bone scan, CT scan and Brain MRI on Wed. Scanning my whole body really that day.

Friday Port will be put in by surgeon and then Chemo to start Monday.( this scares me)

My chemo will be Adriamycin with Cytoxan every two weeks x 4 cycles

then Taxol with Herceptin weekly I think she told me that would be 4 cycles too and the herceptin would continue for a year.

She asked me not to work if I could do it during Chemo, not to have my grandchildren around without a mask.. etc. If I HAD to work ( I work around a LOT of people daily) I would have to wear a mask.

She does not want me sick and have to stop chemo for any reason.

I am so afraid tonight. 15 months ago this was not here. SHe said I had the fastest growing breast cancers( or one of the fastest..)  and that it why it grew in size like it did since my mamo  on  April 25th.

I will be having my surgery after I recover from Chemo.. bi-lat mast which I wanted anyway, and she totally agreed with me.

Then, she said I will need to talk with a plastic surgeon about this but she thinks I will have no reconstruction until after I am done with rads. This upsets me too. This is not what my surgeon thought. But she said the oncologists ( chemo and rads) would know more on this with my plastic.

Can anyone make me feel better. My 17 yr old said.. this all sound good to me mom and as long as you aren't going to die.. I am fine with this all. My husband is great and I KNOW he is hurting so much as all my family.

Was I giving terrible news.. or is this the norm?

God I wish my whole body did not ache tonight.

My insurance is paying for all the drugs.. EMend and all the others..

Laura <--- 40

lisa39

Hi Laura,

So sorry to hear about your diagnosis.  It is similar to mine.  I had 4x AC and have done 3 out of 4 Taxols... Herceptin started too and will continue till April of 2009.  I will start 4 weeks of radiation later this month, as I did not have a mastectomy.  I can't really help you with the issue of mastectomy and its physical and emotional side effects - but lots of ladies here can.  I can give you an idea what to expect with the chemo.  I felt real tired and out of it for about 4 days after each AC session.  But Emend helped me a lot and so did Olanzapine (another anti-nausea med).  I had a lot of trouble with acid reflux, so I kept my cabinet stocked with Pepcid and I would pop a Gravol for low-level nausea, as needed.  I agree with your onc. - if you can stay off work during treatment - do.  You will find your energy is low and you'll need all of it to keep up with stuff around the house.  I have 2 kids ages 6 and 8 and I caught a lot of cold germs from them - so it's true, you might want to limit contact with the grandkids.  Keep hand sanitizer in your bag and use it when you're out in public after touching doors at the mall/grocery store/doctor's office/etc.  You will lose your hair about 2 weeks after your treatment begins, so have your headgear ready.  I wear a wig and sure don't like it much, but it helps me feel somewhat 'normal' when I'm out in public.  I wear hats or scarves at home though because they're more comfortable.  I'm finding Taxol much easier to take than AC - no nausea and way less fatigue.  I found it easier to cope with by just thinking about each part of my treatment as it was happening.  I only worried about AC while it was happening, then moved on to worrying about Taxol and Herceptin... Now starting to think about radiation.  Later, I will start thinking about how to go back to life post-cancer.  I found it too overwhelming to think about it all at once.  For me, it's been a good coping strategy.  Finding out you have a HER-2 + tumor is scary.  But Herceptin has really revolutionized treatment and lowered recurrence rates for us. I wish you all the best.  You are at the scariest and most uncertain time now, but you will see in a few months that you feel much stronger and more optimistic. 

Lisa 

Fitztwins

Wow, sounds like you have an awesome oncologist. Everything that you have posted is right on track. Her2+++ is fast growing. On the positive side we have 2 new drugs to kick its butt! Herceptin and tykerb. 

All of this is scary, but it gets easier with time. Emend is awesome. Take as directed. I don't agree with the masks on the grand children. just have them wash their hands. My kids were in preschool when I went through chemo. I worked the whole time.

Ask for anxiety meds and maybe some sleep aids if you need them. Take it easy. Sounds like you have a great medical team on your hands.

lexi4

Hey Laura,

I sure know how you feel. I was diagnosed w/er/pr- and her2+ bc. I remember feeling like my heart was going to break. I was so scared.

I had 4 A/C, 4 taxol,and herceptin for a year. The nausea meds were great. Make sure to take them as instructed. I thought I was feeling pretty good after my 2nd A/C tx and didn't take my medicine the second day. What a big mistake! I had an upset tummy for the rest of the day and was pretty much a cry baby. The taxol did give me bone aches. Usually it subsided by the 4th day. Herceptin was a breeze compared. It wasn't fun but doable.

It's a very scary diagnosis for sure. Thankfully there are new txs and more in the works. Accept help from family and friends. Know that they love you and God does too. You can do this. We will be here to support you.

Hugs and Prayers,

Lexi

mke

Yes it is sort of scary, and it is natural to be sad about an event like this, but it sounds like you have a great oncologist.

I had a similar diagnosis in early 2006 and I had a similar treatment regimen except after the AC I had 4 rounds of taxol, then surgery, then herceptin and radiation.  I won't sugar coat it - the chemo was hard on me, harder than on most I gather.  I did get sick, and was hospitalized but I didn't miss a treatment.   After the surgery my surgeon came bounding in saying "Nothing there, nothing but a tumour graveyard!"  So the chemo might have been hard on me, but harder on the cancer.   The tumour had all but disappeared, so I had a lumpectomy.  Herceptin was a breeze.

Take heart, this is do-able and you will get through it.

enjoylife

Laura;

I was like you scared too and I work around college students I myself think it will be fine if you work with a mask if it makes you feel better to get out of the house. I had stage 3 too it was a low 3too and I have the herc2 sorry I havent got all the tech's down but I put signs on my front door and back door asking no one to come in if they have been sick or been around anyone. This is the best time not that there is a good time but instead of winter flue's to go through all this. I had my plastic surgeon put in a tissue expander in Boston and I live in MO and have to fly back there at least 2 more times before my surgery next summer its true you dont want them to do the surgery until 6 months after RAD the skin will go back as much as its going to. I like my expander it made me feel so much better my 17 year old told me in April when I started all this it doesnt matter mom as long as your here and I told him I would not be able to come to his football games this August you cant do it all you have to take care of your self if you dont no one else will I am divorced and I know that.Let your husband help you if you dont feel like going in 3 days a week go in 1 or 2 if you can afford it I have to work because no one is here to pay bills. I have found being single my job is keeping me sane too. There is a good book that helped me and its called Theres no place like hope, you will live through this and come out on the other side and be a even stronger person than you are and you sound very strong. Once they have a set plan you will accept it and feel better.Your a hairdresser I am telling you I have had several wigs on some are hot so get a very good wig its something you dont want to cut cornors on I shaved my head it hurt when it was falling out but now I can wait for it to grow back. This is a good place for you to come to You have alot of people here for you.

You will do well its a incovience but then your back to you ....

wishiwere

First and foremost, start hydrating yourself on Sunday morning, before you chemo and then continue the day of and after chemo.  It surely helps to keep the chemo moving through and not affecting your bladder/kidneys, liver and so on.  It's powerful stuff, but it works and it will for you also!

Another thing....get some biotin toothpaste and mouthwash.  Use the mouthwash often, to rinse and keep the buggers at bay.  I had NO mouth sores, but I know many do on A/C and other chemos and it can cause real problems, plus chemo and rads are hard on the teeth also, so take care of your teeth. IF you floss you can continue gently, if you don't now, don't start, as you know it's cause to open tissues and that can lead to infection then. 

Basically, KEEP well hydrated, eat what ever and when ever you can (a lot of small meals were much easier on A/C then full meals).  and even though you feel great the first night, don't eat your favorite meal, b/c believe me, it won't continue as your favorite meal after chemo   I made that mistake!  Smoothies with real fruit (strawberries, blueberries, raspberries, bananas) all great.  Ice cream, real fruit popsicles, try to eat healthy food, but if all you can tolerate is ice cream, then eat it with peanut butter or bananas, or real fruit in it.  I used peanut abundantly b/c I was losing weight and didn't have much to lose, so I ate often and would lose and gain throughout.  I'm still fighting that, so it might be my 'new normal', who's to know!?

Good Luck!  This is all doable and we'll be here with you throughout the journey!  Fight on lady!

Estepp

OMG, you all have lifted my spirits like you cannot believe. I live in Missouri too, enjoylife!

I am right outside Lee's Summit.

I am going to St. Lukes Breast Cancer Center. I HATE to be there but these ladies are the nicest and the most educated ( MOST IMPORTANT TO ME) I have met on this journey.

After reading all your posts.. I don't feel like I am going to die..

I have bone scans.. heart scans.. full body scans and finally a brain scan all to come this week starting tomorrow... And the port Friday ( this scares me) I wonder how much pain I will be in after that Friday night and the weekend? Any ideas ladies? I know you have all been there.

uhhhhhhhhh... I pick up all my meds today for nausea and anxiety... etc...

They told me that I could eat or drink whatever I wanted and tasted good to me during chemo... I wonder if that means I can still HAVE MY 2 GLASSES OF WINE A NIGHT!!

I think I will ask that.. THAT I will hate loosing... hell.. take away the boobies and the wine... ugggggggggggg

Love to you ladies.. you have really helped me feel hopeful... I hope I will be back here soon talking to others like us.. helping them along like these boards and you all have.

Thank you and God Bless you all too!

Laura

lisa39

You'll be a bit sore after the port is put in, but I found extra-strength Tylenol was enough for the pain, and it won't last too long.  Wishiwere is right -- you really have to hydrate well before and after chemo, it will help the toxins pass through your body faster.

Re: wine -- you might not feel like it for the first few days post-treatment, but afterwards go for it.  My oncologist told me it was fine to have some.  Believe me, it helps some days!  Glad all the input is making you feel better.  You will be fine. 

mimi1030

Hello Laura,

My mom was dx with Her2+++ BC in 2004, she was stage 1, grade 1 (which is rare to be grade 1 and Her2+ but she is) no nodes involved, mastectomy.  She did 4 rounds of A/C, which not to sound too depressing made my mom very sick and landed her in the hospital with very little WBC.  My mom got her first infusion and it bottomed out her WBC so rapidly that she had no defenses and some idiot friend brought her sick children to my mom's house but it was too late, her immune system was so low that preventing her getting sick was near impossible.  My mom had to take daily neuprogen shots to bring up her white count.  Also her anti nauseas meds.  Ginger Ale was her best friend through chemo.  She continued with 3 more rounds and that was it, she couldn't take it anymore.  So, she got through 3 out of 4.  Herceptin was not available to early stagers in 2004 so she was not able to get it.

Unfortunately in Sept 07 my mom was dx with mets.  She was put on chemo weekly Taxol/Herceptin and monthly zometa for her bones.  She has zero side effects from it, she is doing very well with her treatments and it is kicking cancer butt, just a couple of tiny spots on the liver to go and she will be NED once again.

Her2+++ is a scary thing, but on the other hand not really, there are very good targetting drugs for it now.  Thankfully Herceptin was the wonder drug for my mom.  Even when my mom was on the potent A/C treatments, the only time she wore a mask was if she thought she might be at risk for infection.  My mom has a 12 year old at home, who at that time was 8 so my mom had no choice but to be around kids, so I think making kids where masks is a little extreme.  But if you know in advance that someones child is sick I would avoid close contact while you are on A/C or at least for the first week after your infusion, that is when the white count hits it lowest about 6-7 days after infusion. 

Working my mom couldn't work, she was too sick, she never left the house so working was out of the question for her.  It depends on how you personally react to the treatment.  Everyone's body takes thing differently from the next, so you may be able to work while on it.  My mom lost her hair after her first infusion and right before the 2nd one, she refused to lose her hair to cancer so she shaved it off while she was in the hospital recovering.

Let us know how you go on your treatment.

Hugs

Michelle

Estepp

HI, I am posting this to a few  areas... love and peace: Laura

Hi everyone,

I did my first Chemo today. It all started at 10:30am. The first thing we did is meet with my oncologist. She gave us the news that my cancer had NOT spread. I spent all last week in tests.. you all know how that goes.. soooo my nodes has protected me. Since I am doing Chemo first then surgery, I will never really know my stage.. but she guessed , with all my stats in... I would be about Stage IIa or IIb

Anyway

Chemo went ok, when the A of the C went in.. "red devil" I was terrified.. seeing it.. wondering if I was the one it was goin to burn through..ugggggggggggggggg

I was ok.

I had four family members with me ( they gave be the "big"room).. and that help for the first time.

My right lower legs and toes swelled to the size of a small thigh last night by midnight... ( freaked me out as I am a small gal).. Dr. did a sono today on the viens in that whole leg and it looked great.. no blood clots. I will ask here what the heck else it could have been.. I was not taking chemo or xanax ...

I have not gotten sick... eaten before, during and after.. drank much waters... had ice chips and possicles tonight.. and had family over.. wore my mask  .. anywhoooo.. I feel tired now.. but it is 11pm here and I took a sleeping pill...

I don't know what tomorrow will bring.. I get my "shot" at 3pm...

So, I feel hopeful and maybe there is a light at the end of ALL OUR TUNNELS!

Love and Peace,

Laura

lexi4

Laura,

 Very good news on your scans! Yippee!! You are well on your way to kicking some cancer boody!!

Right around the 2nd or 3rdday following the A/C tx I would feel a bit "off". It didn't last too long and just make sure to take your meds as the rx says. Also, I don't know if you have taken anything for constipation. That is a lovely side effect that some of get from the A/C. You may not, but taking some senekot or the like did help.

Hang in there sweetie. You are going to be okay!

Lexi 

Fitztwins

Congrats on your clean scans!! Take it easy. Your chemo regime is hard, but it will get better.

Janis

Estepp

Thank you ladies!

Fitz...did they tell you why yours came back so soon or mets? I am sorry. You just get done with treatment and here we go again. Do we have meds today.. or coming in the future to prevent Mets?

Can you tell I am new to this.. I am ANGRY it can come back that soon! Are you doing ok?

Love and Peace

Laura

oldcat46

Laura...    When you get Adria, do they give you ice chips or crushed ice to chew on?  That will hopefully keep your mouth from developing sores and ulcers.   The pre-meds Kytril and Decadron really helped me not get sick.  I drank a LOT of water, like a big jug, each day and it kept me hydrated and feeling well.  The day after chemo I didn't feel bad at all.  The three days after that I had some queasiness and was tired and achy but not anything I couldn't handle.  I lost my hair at 13 days and it wasn't as bad as I thought it would be.  Wigs are ok, I guess, but I only wore mine to church.  There are too many super hats out there and they're more comfortable. 

So glad your scans are good.  Good luck to you with your chemo and God Bless You !!!   Hope some of this info helps. 

Estepp

Thank you very much!

I seemed to take a turn  on the 5th day after chemo. So the past 3 days have been great!

Yes, Idid get ice chips.. I got the mouth sores right under control.. THANK GOD!

Salt water and more salt water.

Next Monday I will know how to deal better with all this chemo stuff. If all I have to deal with are two days where I am wired and 3 days tired and punny.. I can DO IT!!!!!!!

We all can get through this...

Thank you for your post and I hope you all are doing well!

love and peace

Laura

LuAnnH

Laura, sounds like you are well on your way to beating this cancer's butt!!!  I did A/C almost 10 years ago and it was a lot rougher than it is now.  I found it to be cumlative effects.  I did pretty good up until the 4th tx, thank goodness that was my last one of A/C!  To this day I will not drink kool aid from that, it just reminds me of the red devil    Taxol isn't too bad and herceptin is a breeze.  I look forward to seeing you as a survivor for many many many years to come!