New Member

MTome · 06-20-2009, 02:29 PM

I am new to this site and like to introduce myself. My name is Mena and I was diagnosed with Stage 4 on my 48th birthday (no less) due to liver mets. I had been living a life full of gratitude and appreciation for every day that I thought I was cancer free. The original diagnoses was Jan 13th 2005.
I was living in the US back then in the seacoast area and noticed a small lump in my right breast. My GP told me not to worry....my Gyno told me get a mammogram asap!!!! Thank the Lord I listen to her.
Fast forward to my lumpectomy, I heard the words you have cancer,invasive ductal bc Stage 1 ER + PR + Her-2 over expressed no lymph node involvement , must do chemo AC 4 rounds, 36 rads and follow up with Tamoxifen and switch to Arimidex after a year if I became menopausal.
Herceptin in 05 was not considered for Stage 1 patients....oh snap...how unlucky of me!!
I moved to Canada in the summer of 07 immediately hooked up with an Onc who did not feel it necessary to get work up till the fall of 08 as I had no symptoms and felt great I was working out and eating well so no need to worry - thinking it was just a routine Bone Scan, Ultrasound I was relaxed however once on the ultrasound table the technician's behavior scared the crap out of me so much so my knees started shaking uncontrollably.....the look on her face I will never forget!! Few days later...Happy Birthday you have big ole canser all over your liver lady!!!! 6 buggers the largest being a whopping 11 cm!! What does this mean?? How can this be? It was stage 1 - no spreading - doctor told me I was in the clear no worries.....go a live your life she told me...What the????
I started TCH - taxotere, carboplatin and herceptin the real big guns were brought out - I was able to tolerate 9 rounds but I ended up not being able to breath properly due to a pleural effusion, I could not walk the fatigue was debilitating,bad eye tearing, extreme fluid retention,severe neuropathy and of course no hair. It was not a pretty sight but it knocked the suckers back to such an extent my doctor who does not use any descriptive language used the word "remarkable response". The biggest tumor now is 3.6cm . We stopped the chemo and I am doing Herceptin along with tamoxifen so I can regain my strength back and take a break. My doc feels that herceptin alone is not as successful as in combo with a chemo....I really need to maintain some quality of life though and am hoping he can find a chemo that will allow me to work and function. Thank you everyone for allowing this website to exist and thank you Andi for your incredibly generous and welcoming spirit. Being part of a community is very healing and knowing we are not alone is so comforting. I realize that by sharing our story we are spreading positive energy and healing ourselves in the process. Thank you.
Mena

Midwest Alice · 06-20-2009, 02:54 PM

Welcome Mena..I'm not on all the time and when I get on I mostly read and learn. But when I have a question this is where I come. This is a very loving group. Welcome

Mary Anne in TX · 06-20-2009, 03:33 PM

Mena, you truly are at the right place at the right time! You will get lots of information, support, and prayers! I'm so sorry you must be part of our group, but welcome you with open arms. ma

Lori R · 06-20-2009, 04:35 PM

Welcome Mena,
I am glad you located this site. As you say, it's serves as such a wealth of information and comfort.

I too was diagnosed with Stage IV mets to liver. Taxotere + Herceptin knocked in back but unfortunately recently gained another toe hold.

I recently had cryosurgery and plan to post when we can measure the response. Currently waiting for the liver to calm down a bit as the liver is busy trying to repair itself. I'll have a scan in a couple of months.

I am so hoping that I can report back some good news for all of us liver mets gals. So...keep looking and maybe there will be yet one more tool for us to use against the x*&% disease.

I was recently placed on Abraxane which is supposed to be less toxic than taxotere yet still wears down the White Blood Count and Red Blood Count.

Lori

tricia keegan · 06-20-2009, 06:21 PM

Hi Mena, I'm not stage iv so will it to there's to advise you but wanted to say hi and glad you found us!

caya · 06-20-2009, 08:40 PM

Welcome Mena - I'm sure you will get a lot of information and support from the wonderful people on this site.

I see you're in Montreal - what hospital are you being treated at?

all the best
caya (in Toronto)

jml · 06-21-2009, 05:39 AM

Welcome, Mena~
Though this is a club we are all reluctant to have to join, you will find not only a great deal of information & guidance here, but friendship, compassion & support.
I was Stage IV with liver mets since my primary dx in May 2002, even progressing to "innumerable, immeasureable" after not responding to Navelbine/Herceptin.
Ultimately Taxol/Herceptin got me to NED for a year, but after 1 met resurfaced, we tried TCH. That was effective for a bit but ultimately once we were able to isolate the met to just my L lobe, I had a liver resection & have been NED in my liver ever since.
Since your doc is pleased with the progress you've made thus far, maybe he'll consider dropping the Carbo? That carbo was really tough for me-Ugh!I hated it. I found Taxol/Herceptin really tolerable.
I've also been on Gemzar/Herceptin for 2 recurrences, but that wasn't been able to hold the beast back for very long. Now I'm Tykerb/Xeloda for 2 weeks & so far doing pretty well.
Don't lose hope! The right combo is out there for you, we just have to give your body a chance to rest & recuperate, then get back in there & start swinging with some new ammo!
Keep us posted on how you're doing, ok?

Keep the Faith~
Jessica

Dx - 5/17/2002 @33yo ;Stage IV - IDC + liver met;
Lumpectomy, 12/12+ nodes; er/pr-, Her2+++
Tx1 - Navelbine+Herceptin x 8 wks; No response, progression - single liver met to "innumerable/immeasureable"
Tx2 - ISIS 2504 - clinical trial x 6mos
Taxol + ISIS (continuous IV);partial response.
Tx3 - Taxol+Herceptin x 13 weeks
NED

NED 9/11/03-9/17/04, then single liver met recurrence.
9/04-Recurrence 1- Taxol+Herceptin x 4 weeks prior to RFA, but NED again, cxl RFA.
12/04 -Recurrence 2 - single liver met
1/05 - RFA - partial response
2/05 - Abraxane+Herceptin x 9 weeks;No response due to improper dosing(?)
3/05 - Taxol/Carbo/Herceptin to NED again.
11/05 - Recurrence 3 - same single liver met
12/05 - Right hepatectomy-55% liver removed. Success. NED in liver ever since.
2/06 - Recurrence 4 -single lesion in L breast again
3/06 -excisional biopsy. 1cm IDC, extensive high grade DCIS.
No tx due to liver still healing post hepatectomy, follow with Herceptin & scans to keep an eye on DCIS
12/06- L mastectomy w/ reconstruction 3/07 & 8/07
10/07 - Recurrence 5 - Supraclav nodes
Tx4 -Gemzar+Herceptin, til NED 3/08.
9/08 -Recurrence 6 -Supraclav nodes again.Rads1 - x 7wks
10/08 - Acute Renal Failure - ICU x4 days, hospital 1 week,
stents in ureters/kidneys x 4mos.still no known cause???
10/08 - Recurrence 7 -Sternal nodes; supraclav -NED

Tx5 - repeat Gemzar+Herceptin; NED in 1/09; finish GH cycle to 3/09.
4/09 - PET scans shows recurrence 8 in sternal nodes...progression while on GH cycle.
6/09 - Tykerb/Xeloda...Yay! I have The Rash

Believe51 · 06-21-2009, 10:40 AM

Welcome Mena, I am happy you found us and under such circumstances this is also sad. You will gain so much knowledge, support and courage from our family. You shall be inspired and powerful, all the while being loved and nurtured. Feel free to express whatever is on your mind or questions you may have, we have been and seen much more than any humans should.

My Mother was also diagnosed on her birthday and although she was not stage IV, she had trouble with that. We now view this as her gift, her life started over that day, her fight begun. Please understand that I know no one wants nor deserves this disease, no one. I hope that someday you may feel the same, that this particular day was going to happen but it happened on your birthday. Whatever you may ever think, Sweetness, the day you got diagnosed was the day you began to truly live. And we shall celebrate your wonderful life right along with you. That you most surely will come to find out either way.

Know you will be 'Living With Breast Cancer' AND NOT 'Dying From Breast Cancer'. And Mena, we will be here for you through the entire journey. Hold on and stay strong, we are here with you now.>>Believe51

PS: Just in case you have not read it yet, my husband is the one with the bc (bio below) and not me.

suzan w · 06-21-2009, 03:56 PM

Welcome, Mena! This is an awesome support system that you have found. It is the first place I come with questions and fears. Then I call the doctor!!!

Laurel · 06-21-2009, 04:11 PM

Hi Mena,

So sorry you have received the invitation to our little group. You are clearly a serious fighter! I can only imagine how shocking it was to you to hear the new diagnosis of Stage IV! If only Herceptin had been given to Stage 1 patients when you were lst dx'd. It's like Tykerb for us presently. We would like to protect our brains prophylactically with Tykerb, but it is not approved for the adjuvent setting. Maddening!

This site is wonderful for searching for new treatment opportunities. Hang in there, Mena! Please keep us posted on your progress! Healing prayers!

charlotte · 06-21-2009, 04:16 PM

a Belated Happy Birthday.

ElaineM · 06-21-2009, 08:54 PM

Welcome aboard the Her 2 train. The folks on this train keep rolling along despite ups and downs, so you came to the right place.

MTome · 06-22-2009, 07:30 PM

Thank you to those that have taken the time to respond and encourage me.

Mena

Jean · 06-23-2009, 04:27 AM

Hi Mena,
Welcome to this wonderful community of wise and supportive men and women.

I was sadden to read your posts and feel your pain and shock. I was dx. back in 05 like you and remember well the information and treatment that was offered at that time.

Now that you are on treatment you will kick those nasty cells down and out for the count.

Best wishes and sending you a huge hug.
jean

schoolteacher · 06-23-2009, 07:13 AM

Mena,

Hope you are feeling better today. This board is a valuable resource of information.

I agree with Laurel, you are definitely a Warrior.

Please let us know how things are going.

Amelia