Need some advice, input

[KellyA]

I was diagnosed at 37 in May of this year with 2b, er/pr-, her2+, 3 nodes +. Had a double mastectomy, began chemo in June. Had 4 AC, dose dense and have completed 9 of 12 weekly Taxols. Started getting Herceptin with #6 Taxol and will get it weekly for 1 year.

I have done very well so far- gone to work, kept a positive outlook, eaten well, and kept up with 3 little boys. My husband has been a dream through the whole thing and been very supportive.

About 2 weeks ago, I started getting very depressed about my prognosis. Not sure why, maybe I am doing too much reading. I'm having a hard time finding people with Her2 and no recurrences. I'm also having a hard time finding people who had positive lymph nodes doing well. Everything that I see on Her2 says "poor prognosis" and "high rate of recurrence". I keep having all of those terrible thoughts that I shouldn't have and just can't seem to get them out of my head. Not sure if the chemo is getting to me or what it is.

I am physically exhausted, hurt everywhere and for the first time feel like I don't know how I am going to finish this. My counts have been hovering around .1 for two weeks and we've had to push my steroids way up because I had a little reaction to the Taxol on the last treatment. I could not get up out of bed today because I felt so weak. It hurt to move anything- my leg, a finger, a toe. What is going on? Is this normal? How do you stay positive when you feel so badly? My mind is going to alot of dark places that I'd rather not go.... please help.....

Kelly

[Mary Jo]

Hello Kelly,

First let me offer a huge hug to you. This disease is much more than a physical thing. I, like you, handled my treatment well and even emotionally did quite well. Of course, we all have our days. I find that as time goes on for me (I will be out of chemo 1 year already this Nov. 30 and finished herceptin Oct. 11) it gets harder sometime. Learning to live with the uncertainty of recurrence is very difficult. What keeps me focused and moving forward though is this................

The only difference between us and someone else who hasn't been diagnosed with a life altering disease is that our mortality slapped us in the face. We were forced to look at it whether we wanted to or not. None of us know from one moment to the next what our fate will be. None of us. The best we can do is trust in the Lord - knowing He is the ultimate physician to all of us. He has our lives in his Hands and when our time on this earth is through we will go Home to be with Him. That goes for all of us - not just those of us diagnosed with cancer.

It is a daily prayer for me to put my faith and trust in God and to let the fears go. I've tried to live by God's promise in Romans that reads "for we know that in all things God works for the good for those who love Him and were called according to His purpose." (Romans 8:28) I am trusting that He is working out my life the way it is intended to be. I don't understand why there is so much suffering and we'd go nuts trying to figure it out. So I hang on to God - put one foot in front of the other and move forward each day.

Kelly my prayer for you as I type this is His Peace to shower down upon you. I pray this in Jesus' name.

Love from a Sister in Jesus,

Mary Jo

[rinaina]

It is only natural to be scared and worried and we all have been there. Try not to lose perspective though. Your treatment plan is the best for this and on this forum, the people who are most active are those who have had a recurrence but that is a scewed view. There are so many who have done so well and I am sure some of them will respond to your post. Most who do well aren't very active on the forum because their needs aren't as great but every now and the you will see a post from someone who hasn't been around for a while and they are a survivor of many years. There is something to be said by taking a break from reading too much. it is important to be informed however, if it starts to fill you with too much fear and anxiety, then it is time to stop reading for at least a while because those emotions are not healthy for you. It is important to try very hard to maintain a positive attitude. As for how you are feeling, I am so sorry you are having such a difficult time of it. I did to with chemo but now I am almost 2 full months out of my last chemo and doing much better. I am finishing with radiation next week and taking Herceptin every 3 weeks. Once chemo is over, you will feel much better. Hang in there and get all the rest you need. Don't read too much right now, it is better for you at this time to take it easy and concentrate on getting well.

[tousled1]

Kelly,

I know it's easier said than done but try not to look at statistics. Us women who have HER2 breast cancer are making new statistics each and every day. Most statistics are based on findings before Herceptin. I know when I was on Taxatore I had such pain in my joints that it was an extreme effort to get up out of the bed. With the Herceptin I can tell you how I will feel each day between treatments. I get depressed 2 days and for 1 day all I do is cry -- for no apparent reason. After that day, it's back to normal. I am extremely tired all the time and my blood counts drop so I have to get shots of Procrit just about every week. Everyone's system reacts differently. All I can say is that you have many reasons to retain a positive outlook. I firmly believe that a good mental attitude is half the battle.

[Bev]

The taxol is beating you up. Only 3 more weeks! Herceptin and everything else here out will be easy. Try the search tool for prognosis. About a month ago, either Becky, Lani or Robin posted a study with easy to understand line graphs. In most cases there are more survivors than not. Also look at the profiles in courage. There are so many here that have survived many years. There's no guarantee but you don't have one even if you didn't have cancer. There's no reason why you can't be a survivor.

We all have our ups and downs. Because you are so young you should get scanned as much as your doc will agree to. If you can get into a tykerb study, I think it's worthwhile. Looks like it may get approved next year so even if not in trial I think it's worth persuing. Keep us posted. BB

[Karen t]

Dear Kelly,

Based on nearly five years of experience, it seems to me that staying positive - especially when one doesn't feel well - is just too great an expectation. This is not to say that it's fine to go around feeling depressed or scared all the time but a lot of what you're going through IS depressing and scary.

What I found most helpful was talking (for several months) with the new oncology therapist at my HMO. He was the third person to lead the breast cancer support group in the five years that I was aware of its existence. My point in mentioning about the three different people is that the first two were so-so but it was worth it to keep seeking help until I found this third person who has guided me over some truly rough spots.

I hope you will feel better soon which will also help lift your spirits.

Karen

[chrisy]

Dear Kelly,

I'm sorry to hear you are dealing with this, all of it!

It's completely normal to have feelings of doubt and fear of recurrence. Especially as you get further into your treatmentsthey difinitely takes a toll on your strength, and when you are fatigued it is much harder to stay positive or for that matter, focused on anything at all! Also, upon first being diagnosed, many people go into a state of shock and then LATER experience a post-traumatic stress reaction as all those emotions you pushed to the side come washing back in. So, no wonder you are feeling fragile and worried!

That said, ALL of the statistics for Her2 - recurrence, prognosis, etc, are prior to adjuvant Herceptin. You will be getting adjuvant herceptin which in trials was shown to reduce chance of recurrence by more than 50%. So forget the statistics - they just do not apply.

Take care
Chris

[KellyA]

Thank you so much for your replies. It helps to hear from people who have been through it. My family and friends have been amazing, but just cannot help with some of the feelings that I have been having and I don't want to worry them anymore than they already are.

I keep telling myself that the chemo is half the problem and that the "real me" will return when I get it out of my system. I will have to look up the graphs that you told me about to have with an optomistic view.

Through all of it, even when I get very depressed, I have felt God with me and have never felt alone. A few nights when I did not think I would make it, I asked him to carry me, and he did. I need to remember when I feel overwhelmed to keep him by my side.

Thank you again for your words of encouragement.

Love,
Kelly

[Jannie]

I am 3 years out from diagnosis - stage 3, her2+++, er- and look like I have never been sick a day in my life.
We all have bad days - but then I stop and think there is more right with me than wrong. I also have come to understand that the future hasn't happened, and I use up a lot of energy that I need right now if I worry about it. Live every moment.
People that haven't been where we are don't truly get it - that is why this board is important for us.
Laughter and rest have been my savior in that order.
Jannie

Hi Kelly
I am too new to offer wonderful advice or give sage input. However, I must say this: Bravo! You have three children and you are continuing to work everyday? My goodness, you are a superwoman! Would it be possible to take a little break from work, and concentrate on yourself? Could you get help from anyone, like anyone else in the family? You have done remarkably well, amazing in fact. Congratulations for having held together through all of this. Give yourself credit for all you have done. You are an amazingly strong woman, and I think it is okay not to feel 100% all the time. Exercise helps me, could that help you too?


Kind regards
Nedra

[Vanessa]

You have done more than I could ever do. Maybe you are pushing yourself too hard. You don't have to be Superwomen. Just a suggestion, but I agree, that you should take some time for yourself. Also, there are days when I feel invincible, like I am going to live forever, and then there are those days when I feel depressed and wonder what the future holds. Hang in there! You are in my thoughts and prayers.

[KellyA]

I know that this is going to sound silly, but I don't like to feel like I am "slipping". The thought of not being able to do what I used to do scares me to death. My boss told me early on that she would save my job for me and pay me whether I came in or not (I am a preschool teacher). I think that is very sweet and I am moved by her guesture, but I don't like being treated like I am sick and want to do what I can. Here's where you say.... "you ARE SICK!" -(I get that from my hubby all the time). I feel like if I don't fight, that this thing is going to swallow me up whole. I also hate the "pity" looks and do my best to function normally. I have some issues, don't I ?

I also know that I need to rest and take care of myself and I do get a solid nights sleep and eat very well. We have no family here in town, so it is a little harder to keep up. My friends are truely angels sent from above and I am very grateful. I think that remembering how blessed I really am will help me alot right now. I am ashamed to say that sometimes I lose sight of that.

Thank you for your support. It has been wonderful to share my feelings with people who really understand and care.

Love,
Kelly

[SusanV]

Hi Kelly,


Don't be hard on yourself about feeling down right now. I personaly have discovered that I can feel bad, after chemo etc, and I can have very emotionally trying days, and survive both of them independently. BUT when I have a day where I am feeling bad, pain, nausua etc, and I am feeling weak emotionally at the same time, I crash and burn. You will rise above this funk you are in right now. I also believe in taking a break from the reading now & again, and only you know how much is enough. Many of us, myself included have small children. Mine are 6 & 9... when I am feeling bad, I try to turn it around in my mind and make an effort not to waste whatever time I have 5 minutes, 5 years or 50 years wasting opportinities to be the mommy the7 need. I don't cry in front of my hubby or children ever, in hopes to keep their lives as normal as possible, but when I am alone, somtimes a lot of crying to get it all out makes me feel better.

Sending warm thoughts your way

Susan V

[dawn]

Hi kelly,

I know how you feel. I was dx im March 2006. Positive right across the board. I've completed my chemo. In the middle of my rads now. Started taking Tamoxifen a month ago and due to begin herceptin in November. I just couldn't shake the "how do I know what the future holds" feeling. Then I sat down with my onc. He told me, I cant tell you what the future holds no more today than I could have last year before you were dx but you are in a good position, all tests clear and doing everything preventative that can be done. His exacts words were" Within 5 years hopefully, you wont have anything to worry about". Maybe, Maybe not but I'm going to put my best foot forward and live my life to the fullest, with my two kids. I've come a long way in the last seven months but you have to decided to let this control you or you have to take control over this. I also liked the way Maryjo put things in Gods hands. It takes a lot of pressure off. Good luck with things and try to stay positive and keep your head up.

Dawn

[sassy]

Kelly,

I relate so closely to what you are expressing. To this day, I do not feel that I am or have been "sick", and have always found it surprising when someone refered to me that way. I feel that I have a disease that I am dealing with that has at times slowed me down or caused me to make adjustments in my life that will hopefully allow me to move back to a more normal and disease free life. As the saying goes," I have breast cancer, it does not have me."

I have tried to keep as much "normal" in our lives as possible, for my husband, children, myself, work, and friends; however, I also had to realize that I was not superwoman and it was OK to accept help and to even ask for help from friends and family who were more than willing to help in any way. I felt like I should be able to do it all--I had in the past, why should I let breast cancer change that? Accepting help and support is not an admission of weakness or a submission to breast cancer. Pick and choose what you want most to put your energy into. Then let those who are standing ready to help, but do not know what to do, know what you need from them.

There will be times that you will be low, but know that those times will pass and as you continue thru your treatment you will find your positive attitude pulling you thru. Talk with those who support you; talk with those on this board; talk with your medical team; talk with God. You are not alone.

Best wishes to you and know that you can always come here for support.
________
HOW TO USE VAPOR GENIE

[ElaineRyan]

Kelly,


I hardly ever post but you hit a nerve. You brought me right back to where I was once. (I am 1 year post diagnosis) still on tamoxifen and herceptin. I have 2 small children.

I had so many days when I thought I couldn't do it anymore. Trust me you will get through it and you WILL feel like yourself again.

I also had the superwomen complex and found it difficult to accept help but you must accept it and take care of yourself first and foremost.

I agree that you typically read about reoccurance but I agree with the other posts that I find that the people who post the most are the ones that need the support. I check in now and again but I find that when I read to much I start to freak out.

Their are so many advances in medicine today. Just look at herceptin. For all the complaints you may hear about it, its truly a miracle drug. Just remember their are new advances every day.

So remember its ok to feel bad some days but you will get through it for you and your family. It will truly give you new perspective on life. I don't sweat the small stuff so much these days and I try and enjoy my kids all the time.

Lots of Luck and Love. Elaine

[Barbara2]

Kelly, all that you are feeling is very very normal. We have all been there. Some of us have been more sick than others during treatment, but it will get better. The worst is behind you now, and you are nearing the end of treatment.

When you are finally on only herceptin, you will slowly begin to feel better. Some people feel tired with herceptin, too, but it is not nearly as bad as the chemo. It is easy to feel depressed and down when you are feeling so miserable. But as time goes on and you get stronger and stronger, you will start having days of feelilng almost "normal" again.

My suggestion to you would be to let go of the demands you are putting on yourself and take time for a little R&R. You said you are a preschool teacher. I can relate to that as I taught 1st and 2nd graders for many years. Even when I was in my 30's and healthy, I was often exhausted at the end of the day. By Friday I had melted into a puddle and needed the weekend to bring myself back! I loved teaching and had high expectations for the kids and myself, but when cancer came along, I regrouped knowing that new priorities needed to be put into place.

With the holidays coming up, that might be a good time for you to take a break from teaching. The kids are so wound up in December and with preschoolers a lot of time is probably spent with preparing for Christmas programs, and many many other activities. It is such a busy time. If you could be home from Thanksgiving through the new year, you would have time to enjoy your family, prepare yourself for the holidays, and get some well deserved rest.

This morning on the CBS morning program, their health segment was on what to do after treatment to keep yourself healthy and healing. This lady (name?)had witten a book (Title??). She said it is very important to allow yourself time to rest, sleep 8 hours a night, and watch your diet; eat healthy foods, little sugar.

With the treatment you are getting, you are likely to do very well. Have faith, and allow yourself time to start feeling better. Don't expect to do all that you could do before. Someday you may be back to where you once were , but for now..........let go, and let God be your guide.

[sarah]

Maybe ask your doctors about anti-depressants. Be sure they are ones that you can stop when you feel better.

[newgg]

Kelly,

Also do not post much but want to share with you. So many have given you such great stuff for support......listen and take it all in. You have found a wonderful support here. We have all been there ...done that...and especially in the final few weeks of chemo. Keep reminding yourself that after all that....herceptin alone is almost a piece of cake. Then must say that when fatique hits....depression seems close behind. That is especially true when your "normal" activity level is very high and yours must be.......working with preschoolers all day. As much as you want to push and not let this affect your living.....there are some days that you have to listen to your body. Your body is NOT SICK....your body is FIGHTING ...like a Warrior.....and some days needs all the reserve you have. Even the best marathon runner can NOT do 26 miles every day. I have had several friends that did half days the last few weeks. After this stuff starts getting out of your body you will regain strength. Just as we redo the stats for HER2 you will find your "new normal" and write new stats for a wonderful life. But sometimes you may just need that 10 minute pity time....allow yourself that......just a whine and cheese time to let it all out. Usually time mine for the shower and let it all out and down the drain. Get out and search for a flower to smell or a hubby to love or a little kid to hug (grandkids do it for me) or a fresh air walk to get my self back on track. Lean on the loved ones and friends and this board when you need to. Then get up and go for it.

You are doing GREAT....turn it over to HIS hands. Hang in there.....this HER2 Warrior is 2 1/2 years out, NED and going strong.

Hugs, Bonnie