In Need of Some Serious Encouragement!

[VaMoonRise]

Hi Everyone,

I know it has been a while since I lasted posted but I have been going through a lot lately and haven't felt much like my usual up beat positive self. And just when I had started to feel better I got knocked down again yesterday.

As most of you know I am stage 4 with extensive mets to the liver and mets to the spine. I first started out on a clinical trial consisting of Herceptin, Taxol and Tykerb, with Zometa once a month. I was able to stay on this clinical trial for about fifteen months. I started to progress a month ago on this clinical trial so they took me off of Taxol and Tykerb and switched me to Navelbine. I was receiving Herceptin and Navelbine once a week for three weeks with one week off of Navelbine. I just got the results of my CT scan, the first one I have had since being on Navelbine. The results weren't what I had hoped for. The smallest lesions in my liver had continued to stay stable but the largest lesion had grown some more. My oncologist now wants to switch me to what I believe is Gezmar along with the continued use of Herceptin. She said that the side effects are very tolerable and much like they were with the Navelbine. She also said that if the Gezmar and Herceptin don't work that she will then change my treatment plan once again and more than likely take me off of the Herceptin. To top things off I am having surgery tomorrow morning to replace my portacath as it has broken through the skin. It will be out patient surgery as this is typically a minor surgery and will be able to receive treatment of Gezmar and Herceptin the next day on Friday.

Needless to say I am heart broken over my latest CT scan results and I am beginning to become terrified about finding a treatment that will work. I hate the thought of coming off of Herceptin. I already hated having to come off of the Tykerb. I really could use some encouragement right now and I would love to hear from women that have gone through a similiar experience where it took them several treatments to find just the right one that worked and has kept them stable for several years now. I would also like to hear from anyone who has been on or is currently on Gezmar along with Herceptin. Also is their anyone not receiving Herceptin or Tykerb that is doing well?

Thanks Ladies, I really needed to vent and could use some words of encouragement right now.

Love & Hugs,
Nicola

[Carolyns]

Hi Nicola,

I will pray for you. I was on Gemzar and Herceptin after failing Femara. I had liver involvement and the Gemzar with Herceptin did it's magic. It worked for me. I used Zofran preventatively and never had many side effects. I went on to use Faslodex and Herceptin...now switching again to Tykerb and Herceptin. I can go back to the Gemzar if necessary.

Nicola, Gemzar and Herceptin worked well for me and I hope that it works well for you too!

Love, Hope, and Peace,

Carolyns

[lexigirl]

I have read of a lady that had liver mets upon diagnosis. The Gemzar/ Hercetpin kicked her cancer out! She is still NED and on maintenance herceptin. I have lots of hope for you!

Hugs,
Lexi

[dede10]

You know, I don't know what the right combo is for you, for me, or for anyone else. I Do know that we have to keep fighting. We have to keep working on it, and keep trying. I was dx'd 4 yrs ago in March. I am still here. I will, too, be starting chemo, again, in about 2 weeks...and I'm not happy about it. In fact, kinda discouraged, myself. I have 14 grandchildren & one on the way....I have to keep fighting....we just have to keep fighting.

[VaMoonRise]

Hi Ladies,

Thank you so much for sharing your experiences with me and for your words of encouragement. While I am still bummed out about my CT results I will never give up the fight. I will try anything and everything out there and hold on to the hope that one day something will work or that a cure will be found for all of us.

Dum spiro spero (Latin "While I breathe, I hope")

Love,
Nicola

[lisahammo]

Hi Nicola

I have been off the air for quite some time, but just read your message and had to reply. I feel I have a similar diagnosis to you, and my treatment seems to be going the same way. The secondaries in my liver sprang up 6 months after I finished my initial treatment, and I have been living with liver met since July, 2004. I had Navelbine last year for 6 months, however it has done nothing really, and the tumours have grown. I started Gemzar last month & I have to admit it has knocked my blood around a fair bit. I was having it every week though, and ended up having a blood and platelet transfusion. I feel so much better for it now though.

Feeling tired has been the worst side effect. My hair has completely dried out, as if it is going to fall out, but hopefully it won't.

The way I try to look at things is this, it is just something that has to be done, so I right the chemo day off, and get on with living. I refuse to accept the alternative, so just try to get by each day as best I can. Yes things can really get me down, and I think we are all allowed to have our bad days, but generally I am pretty happy and do what I have to do.

Good luck with everything, and let me know how you're going.

[Lala]

Nicola

Hello its been a while since I have posted, I remember you from the chat room here.
I just wanted to say "Hang in there Sister Better Days are Coming!"
One year ago I was facing numerous tumors on my liver and bone mets that flared.
I chose to do Carboplatin Abraxane Herceptin, after 6 long months my liver responded well.
I have since changed treatments a few times, I am on Xeloda Tykerb now.
There are so many lines of chemo out there still and it just takes one of them to work.
I wish you the best this Friday as you get treatment, Stay strong sister.

Hugs to you<O</O

[Vanessa]

Best wishes, I will be sending positive thoughts your way. I did have some extensive liver mets, but they were knocked out by taxotere and herceptin. Good luck. It sounds like Gemzar has worked for some others.