Cancer is back...I just knew it.

[Chelee]

My onc just called me...I knew it wasn't good news. She wanted me to come in but I told her I wanted the NEWS NOW. I have recurrance in the right axilla area which was the breast cancer side. Recurrance in chest wall...not sure how extensive?

Also in the right femur and ilium. I've been concerned about the pain in my right hip...I even told her that leg and ankle has been swelling and causing pain. She wants me to come in today and talk about it. She said I should go to City of Hope or UCLA for a 2nd opinion. Said there are some clinical trials. I told her I would CERTAINLY be getting a 2nd opinion if not a 3rd opinion since the 1st time around with the first onc he told me I was doing TCH and I had NO say in my treatment...his exact words. She acts like its no big deal and said I'll get through this. Easy for her to say.

I can't have rads to chest because of my lung problems...so we can't zap axilla or chest wall. I am so scared right now. With my scoliosis and compromised lungs I'm not sure if I stand a chance. My husband is always home but today he made plans to help a friend move some things. He hears me talking to my onc and I tell him MY bad news & he asked if I had an appt today. I told him yes. Then he says he will leave his cell on and to call him if I need anything. (Gee thanks.) He could of stayed with me and went to my appt...but no...I can see what's more important...its obviously not me.

Chelee

[AlaskaAngel]

Chelee, most of all I am sorry you are so right. You are looking at it very honestly and even though it isn't good news and you don't want to have to do it at all, that is still a big plus for you.

Others know more than I do in many ways scientifically, but my sense of it very, very honestly is that the fear of the unknown makes the unknown a bigger shadow and a lot closer than it actually is likely to be for you.

The biggest challenge I see is, can you make the move to better care providers, or not? Is the gamble of staying with this outfit you are with worth it to you? I hope you can find a reasonable alternative as you work your way through all this.

Much love,

AlaskaAngel

[joyluck]

Chelee,

I am so sorry you have to go through this. You are in my prayer.

joyluck

[Joe]

Chelee,
Dr. Joanne Mortimer at the City of Hope is wel qualified to ofer you a second opinion. I might also highly recommend Dr.John Link from Oange county.

Also, Cybeknife can provide extremely accurate targted radiation.

Regards
Joe

[AlaskaAngel]

Chelee,

John Link was someone who stepped up and wrote several books that talk about breast cancer diagnosis and how to deal with it from the standpoint of how things are, not just how they should be. I've never known anyone who went to him, but I thought his books were more on target in that respect.

A.A.

[Mary Jo]

I'm so sorry Chelee. Sending you love, hugs and prayers.

Mary Jo

[Patb]

Sending my prayers and thoughts that you will
find the Dr. right for you and the treatment.
patb

[Chelee]

Joe, Thank you for the referral. I've been to the City of Hope (COH) before & did see one of there onc...but breast cancer was not their speciality. I've heard of Dr. Link and actually know of someone that was very happy with him.

Last time I called UCLA they said Dr. Slamon was not seeing HMO patients...I am now wondering if that's true? I think I'd like to go that way if possible. Since I'm Her2 I would really like a 2nd opinion with him. (I plan on getting two if not three this time around.) My cancer place played on my fears the first time and I didn't get a 2nd opinion. That will not happen again!

Chelee

[Margerie]

I am in shock Chelee, friggin' crap!!!

Hoping you can find a compassionate and skilled oncologist to help you kick this cancer to the curb.

[Hopeful]

Chelee,

I am so sorry and angry for you. Please know that you are in my thoughts, and I wish you best of luck in finding a caring onc and the tx you deserve.

Hopeful

[Chelee]

AlaskaAngel, You are so right when it comes to the fear of the unknown. I feel sick right now...and it doesn't help that my husband left me here alone to deal with this.

He did say he would take me where ever I needed to go. When treatment starts its like living at the cancer center...so if I change I need to find one that is within reasonable driving distance. I'm just so over whelmed right now and can't even think straight...I don't know what I'm going to do. I'm still so angry at my oncologist. The minute my TM'ers started to go up exactly on 7-22-08...which was 4 months after completing Herceptin...I mentioned several problems I was having just to be blow off. I begged to stay on Herceptin and I almost can't help but wonder had I got to stay on it if it wouldn't of keep the cancer away? (I guess I'll never know.) I see my onc today at 2:30 and then I'll find out how much chest wall & axilla involvement? That's what I'm really worried about...I only have 30% use of right lung and 40% of my left as it is.

I will be demanding a brain MRI to be done asap also! I've had really bad headaches and have been on the clumsy side which is not like me. I am beyond stressed.

Thanks Alaska for your kind comments.

Chelee

[DonnaD]

Dear Chelee,
I am so sorry to hear your news. I am hoping once you see your onc today and talk you will get some direction. This website will help you through, it is already with Joe's suggestions and others.

Maybe your husband also needs some time to settle in with the news. If he was supportive before I am sure he will be there for you again. Give him some time. In the meantime remember we are here. Let us know what you found out today and your future plans.

Many prayers are coming your way.
Love,
Donna

[Chelee]

Donna, My husband helped me alot through my first fight...but he was pretty angry the entire time...made it hard on me. He knows how important it is for me to have a 2nd set of ears today at this appt of all the times. There's alot to take in today and I'm not sure I'll catch it all since I'm so stressed out. I can't believe he decided to move a TV for a friend over going with me. I'm sure if he told his friend my cancer was back this guy would of said you need to be with your wife...this is unbelieveable. They could of moved his tv any time...it wasn't that important...obviously I'm not either. (Sorry...I'm just venting since I have no one else.)

Thanks for the prayers...I need all of them I can get.

Chelee

[michka]

Dear Chelee, I understand how upset you must be. You are right to look for 2 or 3 opinions. I changed oncs twice before finding one I trust and more important, one I could discuss my treatment with. I also understand how bad you feel about your husband's reaction. Maybe it is a way to protect himself but you should tell him how you felt about it. Nicely, but clearly. You have enough to carry. I hope you will quickly find another onc who will give you a good treatment. I am sure there are plenty of options to try the first one being to go back to H;
I send you love and courage.
Michka

[lkc Gumby]

Dear Chelee, I am so sorry to read about this. It just sucks. I too hope that you find the right doc that "listens".
Take Care and God Bless.

[Karen Wheel]

You need to stop questioning yourself. And I agree in the second opinion.!!!!

Also, I think, if I were you I would explore doing some holistic avenues along with the course of "whatever" the doctors ask you to do.... I am doing a combined approach of chemo/herception and then diet and a huge change in how my body can handle and heal itself. The catch is I have changed the pH in my body - and cancer can not survive, (grow or even stay active) in a body with a neutral pH. So.... the approach is change the pH in our bodies and live.... heal ourselves. It really is that easy.

If you want another approach - please email me for more info (I have a TON) at my personal email.
wheelistic@yahoo.com

I am thinking really good thoughts for you and believe that you will get some answers from your doc and also a 2nd opionion --- that will be a good start!

Hope this helps --- Karen

[Julie2]

Cheele,

I am sorry to hear the news. I know its not the news we wanted to hear. I was so panicked and depressed when I heard about my recurrence and I wanted to start chemo immediatly and started Navelbine and Herceptin. BTW I got two years of Herceptin and as soon as I stopped Herceptin I got my recurrence.
My advice to you is to consider just starting the Herceptin without chemo first and see how your tumor is responding to it. This way your body will have more strength to fight the disease. You can always start chemo if just Herceptin doesn't work. I didn't do this because I was so panicked and I wanted to get rid of the tumor fast.
Please concentrate on your health leaving aside all other problems. Hope you will get through this and never need to face it again.

Julie

[Mary Anne in TX]

Chelee, sometimes good people can't deal with cancer. But the gang here can deal with it and give you support and advice. I hate that you were so right about the symptoms. But the good side is that you are strong, smart and determined. Today is a bad day. You have a right to be angry, sad, confused, and scared spitless!
But you are strong, Chelee. And your wisdom will walk you through the things to come. The one thing that I think is very important is to find someone you trust and admire to work with to fight this battle one treatment at a time.
Don't lose hope. I'm praying for you and cheering you on. ma

[lexigirl]

Oh Chelee, no! I do hope that you find a Dr. who makes you feel comfortable with your decisions on which tx to pursue. You will kick this ca's butt again. We are here for you.

Love,
Lexi

[Brenda_D]

Chelee, I am so sorry to hear that.
Remember that you still have Tykerb to use if the re-occurrence is her2+, and lots of other chemos to try.
You might even ask about Adriamycin, since you didn't have it the first go round. It's tough on the heart, but tough on BC too.
Hang in there, girl. We are with you.

also for femur and ilium, demand a bone scan to verify mets.

[ElaineM]

I am so sorry to read your news. By all means a second and possibly a third opinion is a good idea. It looks like Joe had some good suggestions in that area. Bring a tape recorder, a notebook and a pen to all appointments with oncologists. Ask the doctor if you can record the conversation first. Most will agreee. Otherwise take notes and ask the doctor to write difficult words and draw diagrams of the affected areas. Ask the doctor for more than one treatment option. Be sure to get all your concerns and questions addressed. Good luck. Hang in there and keep going no matter what happens.

[Barbara H.]

Hi Chelee,
I am shocked and so sorry. After you begin to navigate this new road, you will start to learn about the new trials and options that are open to you now and in the future. I have been living with stage 4 for 5 years and am still here and working. Right now my heart goes out to you because no one wants to hear this news.
Thinking of you.
Barbara H.

[Yorkiegirl]

Oh No not what I wanted to read from you. Just know prayers are with you. I do hope you can find another Onc WHO WILL LISTEN TO YOU!!!

[Sheila]

Chelee
First of all, I wish I would have been there to go with you today. I can understand your frustration and anxiety after "feeling" there was something wrong for so long, then to get that confirmation. Take a deep breath, then decide on a plan, which i know will be getting another opinion or more. I know that traveling for treatments can be a pain in the butt, but you need to go somewhere where your "team" listens to you and values your opinion. I have been on the mets roller coaster for 6 years now, and although its not easy at times, it is do able. You need to take control, and get your game plan together....you are strong, and know how to fight, and we are all here for you in any way you need us.
This is another stumbling block, that you will climb over and kick to the side...so you can continue your journey. Sending prayers and a big hug, and much strength, although you have already proven how strong you are!

[RhondaH]

I am so sorry and send TONS of hugs and prayers...Please stay positive, look at all the LONG time survivors on the board not to mention all of those that DON'T post on here. Take care.

[Faith in Him]

I'm so sorry this is happening to you. I know everything is a blur right now. I had a chest wall recurrence also. Even though rads are out, you can do hyperthermia with chemo on the chest wall area. I think there are trials now doing this. So they would give you chemo (doxil, I think) and heat up the chest wall area to make the chemo more effective. Just another option.

Hang in there. I now it's not easy. Like Julie said, I too, just wanted the cancer gone so I jumped quickly into treatment. But it is really hard to think under the circumstances. Explore all your options.

I know that life is easier on my husband when he can keep his mind on work and not on my cancer. Maybe your husband was just trying to cope with the news. Still, It's doesn't make it any better for you.

Holding you close in thoughts and prayers,
Tonya

[suzan w]

Oh, Chelee, I am so sorry that you had to write those words to start this thread...I'll say it again...cancer sucks. It does sound like you need a different, more caring and approachable team. I think Jean, on this site, actually got in to see Dr. Slamon at one point, you might try and ask her how she did that. PLEASE do not let this discourage you for too long, you need all your energy to go on the attack once again. Fear is such an overwhelming feeling, turn it around and use it to your advantage !!! Much love, Suzan

[caya]

Chelee,

I am sorry to hear of your recurrence - but I know that you are one tough chick and you will fight it with everything you have, and we will be at your back!

Vent all you want, that's what we are here for.

all the best
caya

[Cannon]

I am so sorry -- but at least you did know it and you pushed! Think of how much you have learned to advocate and take care of yourself.

I'm sorry about your husband, too, but maybe you should just tell him "I need you now." It sounds like he didn't know what you wanted...

I am praying for you and your loved ones.

Rebecca

[Laurel]

I am so very, very sorry for your miserable news. I will be praying, Chelee.

[sassy]

Chelee,

My heart sank when I saw your post. Please know I am keeping you in my thoughts and prayers and am her for you.

Please do seek other providers that will be a part of your team and who you will be comfortable with attending to your needs and concerns.

Your strength will be your asset as you move forward.

[flynny]

just wanted to send out a big hug to you! I'm praying for you.

[Jackie07]

Chelee,

I always loved to see your Golden Hamster on your avatar. And I always enjoyed your postings. You are one tough cookie. And I know you will get through this.

Caregivers are just human like you and me. They have their own problems and priorities. I was told not to drive any more, so I'll have to completely depend on my husband. (Picked up a special transit application - $4.00 round trip from the residence for medically qualified patient - but haven't filled it out yet.)

Give us a report on your appointment. And I hope tomorrow is a brighter day for all of us.

[charlotte]

I am so sorry that you had to hear this diagnosis. Please be assured that prayers are being sent up for you.. You have a lot of people praying for you... and that includes me.
Charlotte

[Patty F]

I just wanted to say that I am so sorry that you received the news that you did. You are in my thoughts and prayers.

[Joan M]

Chelee,

I can just imagine the frustration with your onc, and I don't blame you. After all, you'd been complaining about symtoms for a few months and your markers were out of the normal range.

Do check out your options, because you might be able to have rads to the chest wall. As Joe pointed out, some of the new machines really target a lesion. The beam "bends" to avoid healthy tissue. I had this type of beam to the head after the brain tumor was removed. And Tonya suggested hyperthermia and chemo, which is being brought back to fight cancer that has spread to the chest wall.

I'm sending you good vibes for finding the right solution.

Joan

[Gerri]

Oh Chelee,

This was not the news we wanted to hear. I am sure that at this point you are still numb (sometimes a good thing) but hopefully tomorrow you can get up, regroup and start making some plans. It looks like it is time to get some other opinions - you have some excellent options to look into right in your neighborhood. I had the pleasure of hearing Dr. Link speak at a conference and I must say I was quite impressed. He seemed to know a lot about HER2+ cancer and he shouldn't be too far for you. As you know, COH has some excellent doctors, as does St. Joseph's, just make sure you get a bc specialist this time around.

You can do this Chelee, I know you can. We are all pulling for you. Please keep us updated.

Take good care,

Gerri

[Paty]

Dear Chelee,

I know that there are no words that could give you confort at this time. I just want to mention two things. First, that we will all be praying and that we will all be here for you as we have always been. Second, I had a hypertensive crisis today while still at work and ended up seeing my onc surgeon for a check up, I was so desperate at the moment, during his conversation, he mentionned the case of a girl who developed metastasis to the bones due to bc, this was 20 years ago, she is doing fine and well, so, even when you may feel bad right now, be sure that there is treatment that can help you out there. I also know a lady that has same situation, she is doing great and enjoying life at age 72. We all love you.

Paty

[Chelee]

Thank you all for the support because I really need it right now. I am doing this alone and its so hard. I'm feeling so over whelmed today I can't think straight. I know you guys are the only ones that really get "it"...no one else can.

Joan I am writing down every suggestion people give me. The Gamma knife & hyperthermia both Joe & Tonya brought up. I don't plan on missing anything this time around. The first time they played on my fears and won. I am so thankful for this Her2 board because without it I would be so alone. Right now I don't know what I feel...a combination of so many things. I always knew I could recur...but I honestly believed I was going to make it. Living in denial I guess.

I know I plan on going up to COH to see the onc Joe recommended if she is seeing new patients. She has an impressive backround...she also mentions she loves working with woman. I would like to get a total of 3 opinions if I can get it done quick enough. My onc told me Dr. Slamon is not seeing any patients anymore? I asked if she meant HMO patients? She said he is not seeing HMO or PPO? Hummm? Does anyone here know if that is true? (I really wanted to see him.)

Is there any place on the net that lists which cancer centers have the best outcomes for Her2 bc? I use to have a list of which centers treated what types of cancers and which ones had the better outcomes...I can't seem to find that. Anyone know? I'm on overload big time.

Chelee

[Lien]

Dear Chelee,

This SUX big time! I am so sorry. Try not to visit "what if", as it doesn't help at all.

I bet your husband is just plain scared of losing you. He may need some time to adjust. That's what men do, when they are scared: they withdraw. Or at least, most of them do.

If you need someone with you today, tomorrow, the next day, ask a friend. A stable, sensible, good good friend, if you possibly can. I did. I didn't want the extra stress of dealing with my husband's emotions.

Love

Jacqueline

[Chelee]

I saw my onc today and she was throwing so much at me I couldn't take it all in. (She knew I was upset with her for denying me scans 6 months ago when I was complaining of pain.) Now she is pretending like she cares & wants to get going on everything right now! I'm not impressed. Now I have what seems like a million appts & so many things to do in such a short time. I am so overwhelmed that I feel stuck if that makes sense. :( I've broke down & cried in front of her which I did not want to do...my emotions got the best of me.

She said I could get started this Monday on Herceptin & Zometa for my bones. She also said I could do TCH again...or Herceptin & Navelbine. (sp) She also started naming off Tykerb & other drugs...she didn't think I knew about them all. I've told her I live on the Her2 board...she doesn't listen.

I mentioned one tooth that is bothering me so I'm suppose to see a dentist asap and possible have a tooth extracted. (Which means how could I start Zometa if my tooth gets pulled?) They have an ECHO set up for me this Saturday and I had x-rays today of my hip & femur bone. I also demanded a brain MRI asap...so that's set up for this wk too. First Herceptin infusion will be Monday until I decided what chemo to take with it? (Any help in that area I would appreciate from my Her2 sisters.) I have labs to do and then a port accessment. I have no clue where or how they will place a port this time...it worries me. Herceptin infusion Monday will have to be done one time without a port. I hate the thought of no port...I have no veins left. Oh boy am I stressed out. I don't know how I'm going to get all this stuff done. So many appts in such a short amount of time. I'm mentally and emotionally exhausted already and I haven't even started.

Chelee

[Believe51]

Chelee, I am blown as far away with this news as you. I want you to know that you will be in my non-stop thoughts. I am sending love and hugs to you. Keep the chin as high up as you can and let us carry you the rest of the way. I am deeply saddened and that much more angry at this disease. Fight Chelee, we will walk besides you Lovey!!>>Believe51

[nitewind]

Dear Chelee, you sweet lady, you sound so overwhelmed. I was so sorry to read about your news and that you had to face this visit on your own. I know it doesn't help much but just remember we are all with you in spirit. Wish I was close to you, I would gladly be your partner in this new venture.
I know what you mean about not having a port, my veins are gone too. Don't worry, they'll find a place to put it and won't have to bother those poor veins.
We all love you very much and are with you. Please keep us updated.
Hugs to you
Susan

[Sandra in GA]

Dear Chelee,
Just wanted you to know that you are also in my prayers. The crazy quote below, in my signature, came from a get well card that I received last September when I was early in this battle. For some reason, whenever I was especiually low, this is the one I would dig out and reread. The message for me was, "If you are going through hell, you cannot stop and get stuck. You have to keep going to get out!" So, my prayer for you is that you dig deep, pull up that grit you have, and keep going until you are once again out of this situation.
Lots of Hugs,
Sandra

[MJo]

There's nothing I can add to the great information and encouragement you have gotten here, except that I am pulling for you, too. And I love the Winston Churchill quote. Keep going, Chelee!!

['lizbeth]

Chelee,

This is just terrible news. I know that feeling of being overwhelmed. I was just crying on my husband's shoulder this morning about always being up in the air about my lawsuit, trying to get into a clinical trial, coordinating with work, finding more work, you name it.

When I think about what you are faced with suddenly all my problems seems very small. My biggest difficulty is asking for help when I need it.

We are all here for you. You just keep posting and surely we can help you divide and conquer.

Wishing you the best and a quick victory over your cancer.

Love,

'lizbeth

[tricia keegan]

Chelee,

I only just saw your thread and am so sorry you were right about the recurrance.
You came through this before and will do so again I know once the initial shock wears off and please know we are all here for you.
/(((hugs))))

[janieR]

Chelee,

Initial shock is awful , just so awful but as tricia says we are all in this together and here for each other.

Thinking of you

Love

Janie

[Ruth]

Dear Chelee,
How I hate to read this. You were absolutely right in your worries, they say we do know our own bodies and you had a bad feeling. I am so sorry honey. No excuse for hubby. He should have dropped EVERYTHING and went with you. Maybe shock and didn't know what to do hit him but he better do some serious thinking about his choices. I hope you can get your second opinion and get some options going. Everyone here will help you along the way.
Lots of hugs and love
Ruth

[Sherryg683]

Chelee, Im so sorry this has happened and you have to go back into this hell called treatment. And yes, your husband was a jerk..as most men can be. When I got my diagnosis, the same night, my husband sat by the TV and cheered and whooped on at a football game. He said he was trying to get his mind off it. Your husband is probably very upset and is trying to distant himself until he collects his thoughts.....or he's just being a selfish jerk. Men react to fear so much differently than women. When we seem someone sick or hurting our nature is to nurture. I think men feel if they ignore the problem it will go away. There have been some great men on this board however, so I can't lump them into one group. Please get yourself a good medical team and demand to your husband that he step up to the plate this time...luv..sherry

[Chelee]

My head has been spinning since being told my cancer is back yesterday. Then being rushed off for x-rays...being given appt. dates for ECHO's, infusion dates, dentist visits, labs, port placement, brain MRI and the list goes on as I DON'T have to tell any one of you.

I haven't even had time to really deal with how I feel about any of this. My husband finally said today he will take me any where I have to go...he will use FMLA or whatever it takes. He told me not to worry about it. I was shocked to hear him say that. But I'll see what happens when it all starts up. He was so angry last time I went through this & took it out on me often. It was so hard on me. Like I didn't feel bad enough.

After hearing that and coming here and finding all the replies and support from you all I can't quit crying. But that's what I needed to do. I serisouly DO need you guys right now because I have no one to help me. You would think this would be easier the 2nd time around...but so far that doesn't seem to be the case for me. I've been on the phone all day scheduling all these appts...right now it just seems like too much. One minute I feel like I can do this...then I'm not sure. But I remember the 1st time once I got my first infusion out of the way it got easier it seems. So I'll be ok...but I really will need some help here to get through this. So thanks to all of you for the PM's, prayers, messages of support. I'm over whelmed by it. I'll get my crying out of the way to day and put my boxing gloves back on. There laying around here some where. :)

Chelee

[WolverineFan]

Chelee.

I am so sorry to hear the news. Please know you have tons of people on this board here for you. We are ALL here to cheer you on and help you fight this. You can do this!!!

As for a second and third opinion, I believe it is a must! I requested annually since I was 35 to have a mammogram because of extensive cancer in my family. I was always declined approval from my dx because there was no breast cancer in my family. My dad had prostate cancer, but he was 62 so dx thought it was safe to wait until I was 40 for mam. I was diagnosed earlier this year at the age of 39. Follow your gut. It not only gives you some sense of control in this time, but hopefully you will find a great, compassionate, cutting edge onc in the process.

Hang in there, Sweetie. We're all pulling for you!!

[DianneS]

Chelee,

I know this is overwhelming right now. One step at a time. We are all here for you, sweetie. I'm glad you let your onc know you're ticked off! Maybe keep her on her toes from now on. You WILL get through this. I had all my chemo and herceptins without a port....perhaps they can find a vein without putting in a port? Can you use either arm?

Just a suggestion, but I make up lists for my docs so I don't forget anything. With all the tests you will be having it relieves your mind from having to remember every detail.

Sending the best vibes to you!
Dianne

[Jean]

Sweet Chelee,
I have no words to say about your dr. I am not going there with her. First of all and most important you allow yourself to feel what you feel. Of course it is over the top - and I doubt it gets easier anytime.

I think it is very wise to start the herceptin. Next before you jump into any further treatment I would get a 2nd opinion....while Dr. Slamon may not be taking new patients he certainly would consult. Give his office a call up at UCLA...That alone will give you a strong footing once again as you gear up to fight back.

It goes without saying how sorry I am that this has happened to you...and I am angry!
Love you,
Jean

[Bill]

Chelee, I'm sorry to hear this news. I hope and pray that you may have someone to help you and be there with you, and for you, as you go through this rough time.

[BonnieR]

You mentioned Dr Link. For what it is worth, I have a friend who swears that he saved her daughter's life. She felt like he thinks outside the box...
ETA: Keep the faith

[Shobha]

Chelee,

I am deeply sorry to hear your news. I am praying very hard that God will light your path and bless you with strength to carry on forward as you did in the past and win this battle again!

hugs,
shobha

[sarah]

Chelee this is very sad and I know how depressing this news is. I took the 1st time around very calmly but the recurrence hit me like a ton of bricks and I couldn't stop crying but it did pass.
When you can calmly think about it, you'll remember just how many people on this site there are who have had many recurrences but have survived.
There are so many treatments coming up every year, one of them (at least) will work for you.
I totally understand your despair but eventually you will come to see that you're going to live. Cancer's a chronic disease and has to be treated that way. After you get through this horrible despair and anger, you will have to learn how to live again and realize that you are going to live and have fun again.
Hug your husband and let him hug you.
You are not alone.
BIG HUG, many hugs and love
sarah

[Laurieanne]

Hello Chelee,
Just want you to know I am praying for you at this difficult time. You we're the first to respond to me when I was diagnosed last year. You helped me so much. I wish I could do more.
Love, Laurie

[freyja]

Chelee,
I've been thinking about you constantly and the last couple days and now finally have time to sit and write. We are all shocked and angry and scared right along with you. We are also strong, and determined and optimistic with you, too. You are not alone. You're also not the only one who had issues with her husband during treatment. I know exactly what you're talking about. My husband seemed to turn into a zombie when I was diagnosed. He was completely absent to me, and I had to deal with everything myself, or call my mom in to come stay with me during the hardest parts. He also had anger issues and I was shocked that he could get so angry with me for so many tiny little things that weren't even my fault, while I was going through so much. It doesn't make any sense. At times I thought my marriage was doomed and if I had been in the position to be ABLE to leave I probably would have. Now that I'm not in treatment any more he has come out of his fog and has admitted that he completely couldn't deal with it and was useless through the process, so hopefully he learned something about himself and can react much better in future crisis...we shall see. Men are not actually made of steel, are they?

The really important thing is communication. If he's not doing what you need, tell him. He really can't know what you want him to do unless you communicate clearly, and the other most important thing is that you both agree to try to not take anything personally. Emotions are amplified now, and that makes communication harder because feelings are easily hurt. You're joining forces against a common enemy now, so being angry at each other only weakens our defenses.

Forget one day at a time, just take things one moment at a time. Keep a notebook and calendar with you at all times so you can write down EVERYTHING so you won't forget, and a tote bag or backpack with all your medical records and forms you need, snacks and a book or craft project. That way you don't have to scramble every time you're headed to another appointment, and you'll have something comforting with you when you need it.

If your husband doesn't have the energy to be there for you sometimes, call your family and friends. They don't know what to do either so they need you to tell them.

Take a lot of very deep slow breaths. Slooooow dooooown. It's hard to think clearly if you're thinking about everything at once. Start at the top of your list and tackle one thing at a time.

It all seems simple but those are the things that have helped me the most, and it's easy to forget simple things when faced with so much complicated things.

My love to you Chelee. Your instincts are strong. Trust yourself and you'll do fine. You're doing everything right. Go ahead, cry...I'll do it to. Celeste

[ElaineM]

You seem to be doing a very good job of setting up the things you need and want.
Don't worry about your husband not being as supportive as you would like him to be. We women are strong and are very able to get important things done.
We are very good at finding help and support by ourselves when we need to do that.
I read Dr. Slamon is working with other doctor/scientists developing new drugs (targeted therapies) as part of the Stand Up to Cancer Project.
However, he might be willing to consult about your situation. In addition I wonder if making an appointment to see the breast cancer oncologist at the Johnson Comprehensive Cancer Center where Dr. Slamon works might be useful? You will get to see an oncologist who specializes in breast cancer. Dr. Slamon certainly influenced the way things are done at that facility.
Good luck. You are doing a good job putting one foot in front of the other. Keep going. Hang in there.
Feel free to share whatever you want to share with us.
Most of the members of this group have had alot of ups and downs with breast cancer and can be supportive whenever you want to discuss things with us.

[Linda]

Chelee:
I'm so so sorry to hear about your recurrence.
I wanted to pass on the name of an LA bc expert that I consulted when I was dx. I know she's a heavy hitter, although I don't know if she's still at this practice, since I saw her 4 years ago. But you can google her and see where she is now and if she's someone you might want to consult.
Dr. Silvana Martino
(as of '05) The Angeles Clinic
(310) 582 7900
I wish you the best
Linda

[Becky]

Dear Chelee

I am so sorry about this devastating news. Take a couple of deep breaths. Even though your onc hasn't been the greatest of personalities, she did state one fact - you will make it through this and it will be alright.

Please know I am here for you.

Love and hugs

[charlotte]

I want you to know there is a great deal of folks praying for you (me too)We are here for you.. I don't post a lot, because I hardly ever get any good news to share..We care about you and I hope you can get some rest, before you start fighting this #******
Cancer. let me know if I can help you in any way..You are a strong person... take care, please keep us updated as to your progress.. Charlotte

[vickie h]

Oh Chelee, @#$%^&%$#! I am so sorry to hear this latest news. I just found out as I have been away and dealing with my own stuff, but you are always here in my heart and prayers. Try to breathe deeply and know we all love you. Dr. Slamon is 2 blocks away from my Oncologist, on Santa Monica Blvd. in Santa Monica. Dr. Kimberly Hervitz is seeing his patients and he oversees all of the cases, so please call them and see if you can see Kimberly. You'll be in great hands there...I just know it. In the meantime, my sweet sister, I love you and know you're going to get the right treatment and soon.
Love and Hugs,
Vickie

[loveher]

stay strong Chelee!!! you will get through this storm.
-Sue

[sarah]

how you doing Cheleee???

[juanita]

sending hugs and prayers your way!!!!

[schoolteacher]

Chelee,

You are in my thoughts and prayers.

Amelia

[Chelee]

Sarah you ask how I'm doing? I am just feeling so overwhelmed and have so many things going thur my mind of what I need to do...and how I'm going to get it done. Plus all the questions my onc won't answer. I know I won't feel any better at all till I talk to a "couple" other onc. One is Dr. Mortimer that Joe referred me too...hopefully they will get that set-up this week! They are already past the 72 hrs they had to get it done. I called the case manager at my place & her excuse for why it's not set-up already is because I saw a different onc at City of Hope within the last 18 months so that onc has to release me to see Dr. Mortimer. Well that shold NOT take this long...I'm in a hurry. (What about laws...it said 72 hrs...period!)

All these delays and just more added stress. Then I am a bit nervous about starting Herceptin tomorrow "without" a port...but yet I want to get started now. They keep saying Herceptin one time without a port won't damage my veins like other chemo. (I hope that's true...my veins are shot as is.) I get my port Tues., the day after Herceptin. Seems they did this backwards.

I did go on Saturday & had my ECHO...couldn't get a read on the tech to see if my heart is in good shape? Last time I did Herceptin my EF was always high...70% & I believe 65% was the lowest it went...so I hope its still fine. If I had my game plan I'd feel better I think? Trying to figure out which onc's to get opinions from...& being realisitic about how far I can drive back and forth for chemo is just stressing me out. So many things to think about AND do. I want to get at least a "Consult" with Dr. Slamon if at all possible..that would really give me some peace of mind. I've had such a great response from so many of you on the board and via PM with good idea's and referrals to great oncologist's to see. I'm over whelmed...in a good way. But yet it's hard to pick which ones to go too. I still have to call my HMO directly because the case manager at the hospital told me flat out I could NOT have more then one 2nd opinion. I find that HARD to believe. They just don't want me doing that. I'm just at my wits end about now. This entire last wk has been a nightmare to me. My appetite has been gone & I'm dropped weight & having trouble sleeping since this all started.

Until I get a 2nd opinion I won't know anything and I think thats whats causing me the most anxiety. Navelbine & Herceptin was mentioned...along with Taxotere, Tykerb or Avastin to add to the Herceptin (alone) of course. Or a clinical trial. I first need to know if I really have chest wall recurrance...my PET/CT doesn't sound like it to me...it's my seroma that's been there forever! But right axilla does suggest neoplasms. :( I want to know what they can do about that since I can't have rads? This waiting for 2nd opinions is going to kill me first. I'm just rambling like always...not to stressed out. Sorry!

Chelee

['lizbeth]

Chelee, I know you are understandably upset. But Herceptin is a targeted therapy not a chemotherapy. It won't damage your veins like chemo does.

You'll be okay with one treatment without a port, so don't worry about that one.

I hope that you get good news with your heart's LVEF. You deserve some good news and I'll be praying that you receive it.

We are here for you,

'lizbeth

[harrie]

Chelee, I am so sorry to hear of your news.
Ok second opinions. I was going to get a second opinion from a Dr. David Chan. I believe he is in Redondo Beach. I really liked the book that he wrote. I ended up not seeing him and was referred to Dr. Pegram for the opinion that I wanted regarding the HER2. If it were not for that particular situation, I would have consulted Dr. Chan. I was very grateful to Dr. Chan's office for going out of their way to refer me to Dr. Pegram. They didn't have to do that and they never me me personally.
I go to Breastlink down in Manhattan Beach and there is a Dr. Waisman who is my onco. He is amazing. Not only is he very smart, but extremely compassionate and on the cutting edge. Let me know if you would like more info.
Dr. W is so on top of everything with me, if I have ANY concerns or questions, he is always available via email, any day of the week and he gets back with me with hardly any delay at all, dispite his busy itinerary. Unbelievable.
I have had my share of experiences with bc and Dr. W is my guardian angel.
Email me if you want more info.
Take care.

[WolverineFan]

Chelee,

I can't imagine how frustrating it is having to wait, as that is always the hardest part for me, but you can do this. I agree that you will feel somewhat better once you have a game plan and can start on that. Until then, please know you have a big crowd cheering you on every step of the way, and praying for a complete recovery for you!! Take care and good luck tomorrow.

[sarah]

glad to hear from you Chelee. Good that you're getting Herceptin right away. sounds like the board has given you good references.
If I were you, I'd go with Harriecanarie's advice. you need a very good doctor and a compassionate one.
once you start getting the chemo, you're feel better.
the waiting and deciding is the most worrying period.
hugs and love
sarah

[DianneS]

Chelee,

Just wanted to chime in to say I had all my herceptin tx's with no port. They use a tiny pediatric needle - very painless and does not leave any marks.

Thinking of you & wishing you the best treatment ASAP!
Dianne

[WolverineFan]

Chelee....any updates? You are in my thoughts and prayers.

Hayley

[chrisy]

Chelee,

Sorry to hear your news...I know it's scary as you gather information there's just too many questions swirling around right now. Chelee you are a fighter and although I know it feels like you have to hit it all with guns blazing RIGHT NOW...but you do have time to get the best information, go for that 2nd or 3rd opinion, and come up with your plan.

The big difference now is that you are planning for a marathon, not a sprint. What has not changed is that you need to remember to breathe.

You're not alone.

[agaperus]

Hi Rhonda;
I was reading through and saw in your medical information that your doctor prescribed neurotonin. Are you still on it and is it still helping? My doctor has put my on Lyrica and although it has helped a lot, the weight gain it has caused has my blood sugars climbing. I'd love to know if you are experiencing any side effects from the neurotonin. God bles and thank you.

[Trish]

Oh Chelee I am so sorry you are feeling so bad. I am glad though that so many of us on this web site are right behind you. I am confused though. I thought Joe , the Webmaster was Joe Christine's husband who recently died. Was I wrong?
I am hoping that you will soon get better news.
Trish

[KDR]

Sorry to read your upsetting news, Chelee. Stay strong, there are so many new and good treatments available now. I think UCLA is one of the best places, too. Warm thoughts your way,
your new friend, Karen

[Lien]

Rats, Chelee! That SUCKS! You must be so scared and confused. However, you managed to get a good plan of action going straight away. That's really impressive.
Get those second, third opinions and decide on what feels good to you. Does your present onc work with you on that basis? I hope so! Check out dr. Slamon, as he's given you good advice in the past.

About your husband: I bet he is as scared and confused and upset as you are. He just went into denial, probably. Sometimes it's harder to handle this kind of news for people around you than you would expect. I'm not saying he was right, just that he obviously loves you very, very much, or he wouldn't be this upset.

I hope he realizes that he let you down and apologizes. My husband never went with me for the appointments. I couldn't deal with his fear.
Just once, when I went for a checkup, I was standing by the side of my car and said: I'm so scared! I never say things like that, so he asked: do you want me to come along? I really have an important appointment and three people are waiting for me. I said: cancell the appointment. He did and came along and never said a single word. He needed me to spell it out for him, or he would never have come with me.

Hugs

Jacqueline

[Rich66]

Hmmm..I think folks are reacting to 2009 posts?

[tricia keegan]

Yes, I noticed that too Rich!

[Laurel]

Well, we are a loyal bunch to our friends and can get our collective danders up all over again.

[Karen Wheel]

I noticed this too but I am trying to catch up on reading as I have had little internet connection this last few months and I found myself reading these too.

Chelee - how are you doing now?????

Karen