Words of encouragement please.

Carolyns · 07-09-2006, 01:59 PM

I have been reading the board for a while now but this is my first post. My story is that I was first diagnosed with BC in 1988 in my early 30’s on the left side. I had a modified radical and CAF for 6 months. Then in 1999 when my son was 5 months old I was diagnosed again in the right breast with early stage 1 bc – no mass. Treatment was modified radical and no further treatment. 2002 I had a hysterectomy.

March 2006 I found two lumps above the right implant which turned out to be bc again. My number 6 vertebra was compromised so prior to dealing with the bc I had spinal surgery to replace the vertebrae. Scans showed spread to bones and lymph nodes and a small area of the skin. In April I started on a trial with Femara and (Lapatinib 50% chance) in a trial and Zometa.

I just had my 3 month scans and the original spots were smaller or stable and the skin area and two lumps are gone. But now have 6 tiny spots on my liver. My oncologist took me off of the trial and I am now on Gemzar and Herceptin. I am ER+PR+ and Her2+. Scared beyond belief . I just turned 50 a couple of weeks ago and I have a seven-year-old son and a strong will to beat this beast. If I didn’t know from the scans and the lumps that I was sick I would say that I was as fine as fine could be.

Any one had luck on Gemzar and Herceptin.

Thanks, Carolyn

Sherryg683 · 07-09-2006, 02:49 PM

I haven't been on Gemzar, but i hear Xeloda is good for liver mets. I would be pushing to get on this. Plus you should qualify for getting on Tykerb (lapatinib) now for sure. This BC thing seems to be a constant battle and we just have to stay up for the fight. I know it's easier said than done, especially when you have young children. I have an 8 year old daughter that I have to be here for. My Oncologists assures me that there are so many new and better drugs that they will be coming up with in the future, if my Cancer should decided to rear it's ugly head again. I am currently in remission from 2 small lung spots but I am still scared about it coming back. Stay strong and don't be afraid to do some research of your own. I would definately question my Dr. about Xeloda for those liver spots...sherryg683

judiek · 07-09-2006, 02:52 PM

Hi Carolyn,

I'm so sorry to hear your latest news. I have had mets to lungs and liver since Jan of 2004. I had a lot of disease progession in December and Jan and the doctor switched me to gemzar. My scans in March showed that my lung disease was nearly gone and the liver tumors had significant shrinkage. I'm awaiting word on my latest ct from last week. I did break a slight sweat and fever with cycle one but nothing bad. I just completed cycle #6 and have found gemzar to be the easiest chemo I have done. I also started with a reduced dose from the begining since gemzar can be tough on the counts. I have only missed one treatments because of a low ANC. Best of luck to you Carolyn...please let us know how you do

Warmly,

Judiek

chrisy · 07-09-2006, 03:09 PM

Hello Carolyn,
I don't have experience with that particular cocktail, but I found this link regarding a study of this combo. You will probably get responses from someone who has first-hand knowledge. http://patient.cancerconsultants.com....aspx?id=33206
It also strikes me from your post that in addition to having much to LIVE for, you also have much to be hopeful about. It seems that you have not been "heavily treated" - from your post it looks like your only chemo was the CAF in 1988, and now recently the Femara + ?.
Being ER/PR and HER2 postive, there would be many targets and options for treatment of the metastatic disease, and you have reason to hope that this can be managed for a very long time. If I understand your post, it sounds like you had both response and progression while on the Femara and (50% lapatinib) trial, possibly you were in the Femara only arm and just need something to whack down the Her-2 pathway. Given this possibility, your onc is right to get you onto the Herceptin.
I had Taxol/Carboplatin/Herceptin for extensive liver mets, but people have success with different combos. The important thing to remember is that there are lots of options - and it is definitely a plus that you are feeling so good now! You should be much better able to handle whatever chemo you need to throw at this.
You also mentioned you have been visiting this site; if so you are probably aware there are many here who are beating the odds and staying around to see their babies have babies of their own! This can be true for you, too. You've beaten this thing down before - you will again
Hugs and prayers,
Chris

Carolyns · 07-09-2006, 05:59 PM

Dear Chrisy, Judiek, and Sherry,

Thank you so much for your quick response. Sometimes I make myself crazy and my friends can’t fully understand how I feel…and I don’t expect them too. I just listened to the NPR radio show about cancer survivors. It was speaking to the use of positive imagery and meditation. In other words, creating a safe and tranquil place of pleasure in your mind. They said to go there 15 to 20 minutes twice per day.

Anyway, I am trying my best to do my part with yoga, visualization, diet and so on….but getting on the right drugs is key to beating this thing back.

Thanks for your kind words of encouragement, advice and the link. I am really glad that I found this place. You ladies are great. God bless and peace.

Carolyn

Carolyns · 09-15-2006, 02:03 PM

Friends,

I wanted to share some positive news with you. I called my doctor to get my CT and Bone Scan results in advance of my appointment, which is next Tuesday. I am on Gemzar / Herceptin weekly for 2 weeks, Herceptin alone week 3, and Zometa once every 4 weeks.

The “tiny” liver lesions are down to 3 from 6 and the 3 that remain shrunk in half. The bone scan shows what the doctor refers to as the flare effect. So, it seems that the translation is that the report reads as though things have gotten worse but according to the doctor that is due to healing activity.

I meet with her on Tuesday to see how we proceed. I think I will have a little celebration this weekend.

Thanks for you warm wishes and support!

Carolyn

RhondaH · 09-15-2006, 02:47 PM

ENJOY!!!! Take care and God bless.

Rhonda

Bev · 09-15-2006, 06:14 PM

Congratulations Carolyn! BB

Vanessa · 09-15-2006, 07:42 PM

I was just diagnosed in April, so after having surgery I started chemo and Herceptin in June. I will not get the results from my petscan and catscan until next Thursday, so I don't have much feedback as far as my results. I have gotten a great deal of encouragement and hope from this board and I am hanging on to it. I would like to welcome you to this board and wish you more success. Hang in there!

eric · 09-15-2006, 09:41 PM

Carolyn,

Thought it might help you to know that my wife Caryn was diagnosed with mets to lungs and liver in July '04 and was treated successfully with gemzar/herceptin. She has been NED since Jan '05 and doing great! Great combo and I'm glad you seem to be having a positive reaction as well.

All the best,
Eric

Carolyns · 09-18-2006, 06:38 AM

Rhonda, Bev, Vanessa,
Thank you very much for your words of encouragement.

Eric, Thank you very much for sharing your wife's experience with Gemzar with me. My original Oncologist thought that this was not enough juice and wanted the Carbo, Taxol, and Herceptin combo instead. It is so scary when the doctors don't agree on what's right. It really helps to hear from others who have successfully travelled the same path. My best wishes to you and your wife!

Carolyn