One year since herceptin ended....

Mary Jo · 10-14-2007, 06:08 AM

It's been 1 year since my herceptin ended. October 11th to be exact and you know, it truly took a GOOD 6 months to feel back to normal. You know, in all honestly, I think it took even longer when I think about it. Little things. Things you really wouldn't notice unless you looked back and know how you feel today.

As far as weight goes - I feel I've leveled off nicely, and that really was the easiest part. Once the herceptin ended my gained weight (I believe water weight - drugs etc) during chemo/herceptin did drop off quite easily (thankfully). The aches in joints also left quite quickly. But other little things - that you really don't pay attention too or even know suddenly start coming back to normal.

I remember feeling tired early in the evening for a long time. I remember thinking this was probably the "new me." But now being a year out since herceptin ended I feel totally back to my normal self as far as energy goes. Also, when I'd wash my hair or blowed my hair dry I NEVER noticed falling hair. Ever. Not in the tub - not on my shirt and before breast cancer there was always plenty of hair in the tub after I washed my hair - plenty of hair on my shirt after styling it. Just lately, like the past 2 months I've noticed that too is back.

So, in reality, I think it takes a long time after treatment to have our bodies get back to "normal." In some ways it's a bit scary too. I told my husband on the year annivesary since herceptin ended that I feel my body is really back to the before breast cancer body and in some ways that's a bit scary. Oh well, not going to fret about what I can't change BUT will thank God for giving me "myself back" and for all I've learned thus far on this journey. It's been a blessing in many, many ways.

Just wanted to share this with you all and curious as to how others feel about it as well.

Mary Jo

Sheila · 10-14-2007, 06:17 AM

Marejo
I wonder what it would be like to be done with treatment...I am jealous, but at least after 4+ years of Herceptin so far, and numerous other chemos, I have an excuse for the weight gain...it is great to know that there is normalcy after treatment, although I don't know that I'll ever reach it. You go girl....! Congrats on being 1 yr post the big H!!!!!

Mary Anne in TX · 10-14-2007, 06:27 AM

Thanks so much Mary Jo! Your sharing about the "new old" you was wonderful. I have been hoping two contradictory things...1. I'd get my energy and "me" back when I was off of herceptin and 2. that I'd never get off herceptin!
I know that my hair is different on herceptin also. I think I wash it because I've always done it everyday. It hardly ever gets dirty...well, how would I know!
Mary Jo, thanks a million for being so honest.
Mary Anne

Debra · 10-14-2007, 09:09 AM

Mary Jo -

Good to hear you are feeling back to normal! You and I have a very similiar diagnosis. My lgst tumor was almost 4 cm as well and sentinal node had microscopic CA cells.
We are about 6 months apart in treatment so I am 6 months post-herceptin right now. My weight hasn't dropped but it has stopped "going up". I still notice puffy ankles though and hoping that goes away soon.

It is just nice to hear someone say, "I am starting to feel normal again". Sometimes I wonder if that will ever be or if I need to adjust to a "new normal"!

KRISS · 10-14-2007, 09:32 AM

Thanks Marejo yet again. I still have 5 more months of the big H but now know there is an end and most will go back to normal. You give so many of us inspiration. I hope at some time I will be able to post the positive things in my life as you and several others do. Have a blessed day!

Mary Jo · 10-14-2007, 09:40 AM

Hi Debra,

Just wanted to comment on your post. I agree that in someways we need to "adjust to our new normal." When you said that sometimes you wonder "if you'll ever be normal again" I can relate to that as well.

As I said in my original post, I truly do feel that PHYSICALLY I am back to my before breast cancer self. I have oodles of energy, I feel strong again, powerwalk/jog 4 - 6 miles every day (everyday cause I love it - strap on my ipod of inspirational music - sing praises and pray and feel TOTALLY REJUVINATED when I'm done - spiritually and physically) feel I look good (if that can be possible

and feel healthy once again. That being said...................there is that "new normal" you spoke of and that "self" I also have. That is the "new normal PSYCHOLOGICAL self" That is a "new normal" that took a while to adjust too. It's a much better "self" now, 2 years out from surgery BUT it's a "self" that takes adjusting too. I am totally new and different when it comes to lots of areas of my life. Almost all of those areas are my life are wayyyyyyyyyyyyy better than they were before breast cancer. My whole mental state is better - I am happier - I believe I am healthier BUT more importantly I have an outlook on life that is healthy - happy - and very confident. Then there is that "scared" self (yup that "self" exists too) - that I deal with everyday. It, too, is getting better and better but I believe some of that is just learning to accept our "new normals" and to believe beyond a shadow of a doubt that a plan is in place for each of us and I am learning to accept that and to trust that what is best for me will take place.

So just wanted to say that I understand your feelings and feel much of it also or have felt that way.

Hugs,

Mary Jo

dhealey · 10-14-2007, 10:24 AM

Marejo, Thanks for sharing your thoughts. It is great to know there is life after treatment and getting back to your some what normal self. Congrats to being NED for so long

Jean · 10-14-2007, 02:59 PM

Mary Jo
Happy 1st Anniversary!
Yes, life certainly changes during and after treatment. Like you it is all
for the good. Those silly unimportant issues are just that - silly and
very unimportant! Life has developed into an entire new meaning,
I smile more at poeple (even if they don't smile back) I am just so
happy and grateful.

I am now 4.5 months out from Herceptin and I have lost the 20 pds.
that I had gained. Feeling less tired and getting my energy back.
Still experiencing every now and then some muscle cramps in toes, calfs and fingers.

Wishing you all the best
Hugs,
jean

Faith in Him · 10-14-2007, 03:28 PM

Congratulations, Mary Jo. So glad things are back to normal for you. Yes, indeed, God has a plan for you and your life. That knowledge has been one of the only things that has kepted me sane through this whole process. Knowing that He loves my family and children more than I do and has a plan for them too, has also helped.

God's blessings upon you.

BonnieR · 10-14-2007, 03:30 PM

Thanks Mary Jo. I need reminding that this too shall pass. I am discouraged with how tired I feel now. I have 2 more TCH and then a few more months, at least, of Herceptin. I am hoping the Herceptin phase is a bit easier than I am feeling right now. Although I know I won't feel "normal" for quite awhile..if ever. As you point out, it will be a "new" normal.

Debra · 10-14-2007, 03:41 PM

Mary Jo -

Wow! I think your in my head!! Your post to my post, is exactly what I am just starting to see or at least, anticipating to see and feel as I approach my two year mark since diagnosis.
You really sound like you have a new "lease" on life. Some good needs to come out of a BC diagnosis and I believe you have found that. You truly are learning to live with the new normal aren't you?!

Thanks for your post!

Mary Jo · 10-14-2007, 03:46 PM

Hi Bonnie,

Oh dear, trust me on this..........you will start feeling so much better when the TCH is finished. You will. Chemo is a tough road to tow, not a doubt, but SOOOOOOOO worth your while. You're doing great and are almost finished - YIPPEE - better days are on the way. They are.......they are.....they really are.

Praying for God's Peace to surround you,

Mary Jo

Vanessa · 10-14-2007, 05:40 PM

Congratulations, so glad to hear you are feeling much better and normal again. You are a true survivor and I wish you the best. Keep on powerwalking!

RhondaH · 10-14-2007, 06:14 PM

congratulations!!!! I TOO have been off of Herceptin for 1 year (as of 8/10/07) and some things are normal, some will never be. My eyes are "foggier" though not as bad as they used to be. My hair is finer and thinner (thinner is ok as I USED to have 3 heads of hair...but it still feels like something is missing). The neuropathy in my feet is still quite bad (some days worse than others). And my toenails are thick and ugly, but considering the alternative...I'm wonderful. Take care and BIG huggs.

Rhonda

Sherryg683 · 10-14-2007, 08:23 PM

Never really thought that it could be the Herceptin that was keeping me from getting off that last 5 pounds (OK, I'd like more but I'd settle with 5). sherryg

Catherine · 10-14-2007, 10:14 PM

Quick comment.

Just returned after a long day and a long weekend. This is just the post I needed to see. Maybe I will get my evenings back one day. My last Herceptin is Dec 7.

As always, thanks for the details and the facts.

Catherine

weezie1053 · 10-17-2007, 08:54 PM

Mary Jo,

I too would like to thank you for your post. My AOL was down, and I have been "powerwalking" through threads. I have two more Herceptin treatments left, and your cheery message was like turning on a light switch to get me out of my recent slump. I have read that Herceptin can cause mild depression, and I am beginning to believe it to be true. It is so hard not to worry about tomorrow, but your inspirational words give me hope for feeling normal in the weeks and months ahead. Although I have always loved my job, I think once you start looking better on the outer self, they assume you are "healed," and we all know we are still suffering from the Chinese disease, "draggin ass." It's hard to keep up our old routines.

Thank you so much for turning on my light switch. I have plans for my last treatment. I am buying a huge sheetcake for the nursing staff to celebrate with. I am also buying my Oncologist a new white coat because I am sick of looking at his yellow sleeves. I teased his secretary that he leaves it on the back of his office door, and she said she thinks he leaves it on his floor. I work retail, and I just can't help notice details on clothing.

Wishing us all sunny days ahead. God bless this website!

Louise