Here we go again!
 

Just less than 3 months ago, I had my regular scans. Everything looked good and mets continued to shrink. This week I had the same scans again. My brain looked good, except for continuing white matter that makes me loopy. And L4 on my spine looked good. That's the good news. (Don't let it overwhelm you.)

My liver is now more involved than EVER. I have mets growing on several vertebrae, several ribs, many, many lymph nodes, including those around heart and stomach, and pelvic region. It's like I just spent the past 2 years sitting on a stationary bike, working hard, but going nowhere.

I'll be changing from Gemzar/Herceptin/Zometa tomorrow to Xeloda/Herceptin/Zometa. And I had a STAT MRI of my back today to look at the tumor on L12. We're afraid it's moved too close to the spinal cord, just like Mary Crawford's. I've yet to have any direct pain on it, or had problems walking. If it looks bad, I assume we'll be doing radiation very soon.

I've been doing weekly Gemzar for months now, but it caused low white blood counts. Thus, it was actually done every other week lately. Apparently not enough to hold the cancer in check. And Herceptin doesn't appear to be doing a lot, if any, to help.

As my onc says, there's something about my cancer than it just comes back with a vengence. There's my latest. I hope others have much better starts to the New Year.

Love and light,

Lisa

Oh Lisa...
 

I just said a prayer for you. Please take care.

Rhonda Hoffman

Lisa,

Are you not trying to participate in a clinical trial involving Lapatinib or Avastin? Lapatinib might work for you if your cancer has more her1 than her2. We really want you to reach NED somehow.

Julie

Lisa,

Damn it.....so sorry to hear this disheartening news. May God Bless you and help you to endure this challenge!!!
Love, Amy

Hi Lisa,
I hate these setbacks. I hope that the next chemo combo will do its job. My thoughts are with you,
Best wishes,
Barbara H.

Sending love and light your way and hoping the new regiman knocks it all off the map.


Best
tami

oh Lisa... I'm so sorry. To say this just sucks is so inadequate. But it does, and i am sorry.

I know you are just sick of the whole thing, but from this side of the screen, I have hope that you will show very quick and good long response to the Xeloda. And perhaps over time, you'll be feeling the same.

sending you love, hope and hugs,
patty

Lisa-- words escape me. I just wanted you to know that I read your post, and I send along all the good vibes that I have at my disposal. Jen

Other new drugs
 

Zut alors! They say that is a nice way to curse in French!!

Foiled again ... and again taking up arms.

I have a friend in Texas who is taking a couple of things for very stubborn mets. She did well on the Xeloda (she is not HER2 pos) then had to stop it. She is taking Curcumin and a new drug called Zarnestra along with a hormone suppressor. So far she is showing improvement again.

She was the first one at MD Anderson to get the Zarnestra. Dr. Valero is her med onc. Something like this may be what you could look into.
Glad the brain is stable or improved.

Stationary bikes are definitely NOT as much fun as the open trail with the breeze across your face!

Lisa,

I can't begin to imagine what you are going through right now. Please know you are an inspiration to me and alot of other members here.

You are in my prayers.

Maryanne

Lisa


I am thinking of you and I was worried when you hadn't posted in a while. Someone mentioned Avastin and I think you should push,push and push some more for Avastin to be added to the new Xeloda blend. It would be used off label but it is on the market and it has shown promise that it works. An inflammatory Her 2+ woman at my cancer center is on it with your new Xeloda blend and it is working for her. An to boot - it was my crazy doctor who seemed so impotent to with me (who I switched from about 5 months ago) that added the Avastin.

Since it is another monoclonal antibody, it shouldn't add much as far as side effects and you will just deal with what Xeloda's effects are.

Please keep in touch and let us all know how you are doing. You are a gift to all of us.

Love, Becky

distressed
 

Dear Lisa,
I'm very distressed to hear this SNAFU as you were the very first person to reach-out to me when Linda got very ill. I will never forget that. You were my endoctrination to this support group!

There is no reason for things to spin out of control this fast! Someone mentioned lapatinib, I agree. As well, I would go to the end of the planet to get some avastin. That and probably cisplatin. These are all cutting-edge combinations that aren't tried and true but there is enough small sampling empiracle and antecdotal evidence to suggest that these would be a very effect combos for you.
I also wonder if you could get your hands on some pertuzumab, which is a glorified lapatinib.

I know you have faith in your onc but I really think that things are getting down to the crunch and maybe you should contact U of W or UCLA or MD Anderson, etc and get some other treatment recommendations. I think that there are possibly more effective treatments than those being offered and as you know, I'm not a doctor but.....I think this is a case where you don't leave a life-altering treatment decision in one man's hands.
Please take care and if there is anything you need.....
Al

New directions
 

Lisa, I hope you can hear all of us because you mean a lot to us. Thank goodness for this place. I throw my vote in with Steph and Al in checking out other major cancer center treatments. Things are moving very fast and places like MD Anderson are leading the way.

AlaskaAngel

Lisa,

I have been thinking about you lately also. I am sorry to hear this news. I know that you are a very tough lady and somehow there will be some good news ahead for you. Someone posted about GW0517 (or close) to that. That may also be worth trying. My thoughts and prayers are with you and your family.
XOXO,
Anne

Lisa, I was thinking of Lapatinib and Avastin also.

Dear Lisa,

I hate to hear this news, but I hope you know I'll be thinking of you A LOT while you come to grips with this set back...I just think with the new year ahead, you'll get ahead of this situation and we're here for you. I too think Avastin is a possibility, and Xeloda can be a very effective drug...I know two at my treatment center on Xeloda/Herceptin who are in remission from lung mets and Inflammatory BC with this combo.
<3 Lolly

I'll be keeping you in my thoughts and prayers as well -- wish we could do more to support you at this difficult time.

Jill

Add me to the prayer list also - so sorry to hear this news. Will be thinking of you constantly.
Keep fighting,
jen

Here we go again!
 

Lisa,

My thoughts and prayers are with you. I truly pray that a new combo of meds will do the trick. Please talk to whoever you can about Lapatinib, GlaxoSmithKline is the sponsor for a clinical trial with Lapatinib.

Warm Hugs,
Nicola

My god you're brave! Sending up prayers for you and your journey.

May you draw on the strength that I can feel through your message.

Gina

Oh bugger....
 

I'll be thinking of you too.
Christine

This SUCKS!
 

Lisa,

I are REALLY sorry to hear about the stinky news on your latest scans. I agree with the others on checking out Avastin, cisplatin. I had such confidence in my previous medical team... but looking back it was mainly in my Physician Asst. I just started a Lapatinib trial (about 1 1/2 week ago). They are hard trials to get into. The only one I fit was the refractory inflammatory one. I didn't start out with inflammatory BC at orginal DX, but it has remained in the skin since recurrence. Anyway, I am going to paste in the latest trial, the biggest "jump" is staying off all Chemo for 4 weeks. That was really scary for me and my mets aren't as advanced as yours. So, maybe this is too much of a leap for you, but as all the others have said, you are REALLY an inspiration to us all and we want to help you in anyway that we can.

God Bless,

Cindi.

P.S. There is the Angel network for flying and I am sure that somehow/somewhere you can get assitance for living expenses in Maryland. When I called Bethesda about another trial, they were VERY sharp. I am talking about the second person (the one that calls you back within 1-2 days).

P.S.S. I'll be Praying for you !!!!!!!!!!!!!!!!

A Phase II Study to Evaluate the Efficacy and Safety Using Combined Monoclonal Antibodies, Trastuzumab and Pertuzumab in Subjects with HER-2 Overexpressed Locally Advanced and Metastatic Breast Cancer

This study is currently recruiting patients.
Verified by National Institutes of Health Clinical Center (CC) November 22, 2005

Sponsored by:National Cancer Institute (NCI)Information provided by:National Institutes of Health Clinical Center (CC)ClinicalTrials.gov Identifier:NCT00263224
http://www.clinicaltrials.gov/html/images/arrow2.gif Purpose

The HER-2 transmembrane ligand-less tyrosine kinase receptor has become a popular molecular target in the treatment of cancer in recent years. It is overexpressed in 25-30% of breast cancers. Recombinant monoclonal antibodies, trastuzumab and pertuzumab, both target the HER-2 receptor but at different epitopes of its extracellular domain. Trastuzumab exerts its anti-tumor activity by several mechanisms; these include receptor down modulation, prevention of cleavage of the receptor's extracellular domain and by recruiting host immune effector cells. Pertuzumab sterically disrupts HER-2 heterodimerization with other HER family members, thus preventing lateral signal transduction via the Ras-Raf-MAPK and the P-13K-Akt pathways. As the majority of breast tumors that initially respond to trastuzumab begin to progress within 9 months, treatment with this monoclonal antibody combination may be beneficial.
The purpose of this study is to determine the efficacy and safety of pertuzumab and trastuzumab in patients with HER-2 overexpressed locally advanced and metastatic breast cancer that have previously been treated with trastuzumab-based therapy. Before commencing treatment, all eligible patients will have a cardiology review and serum samples taken for correlative studies. Additionally, eligible patients with tumor accessible to biopsy will have biopsies performed.
On Day 1, an intravenous dose of trastuzumab will be administered. If patients have not received trastuzumab in over 1 month, they will receive a loading dose of 8mg/kg. If they have received trastuzumab within 1 month, an intravenous maintenance dose of 6mg/kg will be administered. On Day 2, an intravenous loading dose of pertuzumab (840mg) will be administered. On Day 22, an intravenous maintenance dose of both agents will be given (6mg/kg of trastuzumab and 420mg of pertuzumab). Within three days before receiving treatment on Day 22, a repeat cardiology evaluation will be completed on all patients and tumor biopsies performed on those who underwent biopsy before Day 1.
Both agents will be administered every 3 weeks from then on until disease progression occurs or drug toxicity precludes further treatment. Subjects will be evaluated clinically with physical examination and laboratory assessments every three weeks throughout the study. Subjects will be formally evaluated for cardiotoxicity using quantitative echocardiography before every cycle (or every 3 weeks) or at any point if there is clinical indication. Measurable disease will be re-assessed every 6 weeks (or after every 2 cycles). Exploratory correlative studies investigating downstream signaling markers of HER-2 receptor will be completed on both tissue and blood samples.
InterventionPhase Drug: Pertuzumab
Phase II

MedlinePlus consumer health information


Study Type: Interventional
Study Design: Treatment, Safety/Efficacy

Further study details as provided by National Institutes of Health Clinical Center (CC):

Expected Total Enrollment: 40
Study start: December 2, 2005


The HER-2 transmembrane ligand-less tyrosine kinase receptor has become a popular molecular target in the treatment of cancer in recent years. It is overexpressed in 25-30% of breast cancers. Recombinant monoclonal antibodies, trastuzumab and pertuzumab, both target the HER-2 receptor but at different epitopes of its extracellular domain. Trastuzumab exerts its anti-tumor activity by several mechanisms; these include receptor downmodulation, prevention of cleavage of the receptor's extracellular domain and by recruiting host immune effector cells. Pertuzumab sterically disrupts HER-2 heterodimerization with other HER family members, thus preventing lateral signal transduction via the Ras-Raf-MAPK and the P-13K-Akt pathways. As the majority of breast tumors that initially respond to trastuzumab begin to progress within 9 months, treatment with this monoclonal antibody combination may be beneficial.
The purpose of this study is to determine the efficacy and safety of pertuzumab and trastuzumab in patients with HER-2 overexpressed locally advanced and metastatic breast cancer that have previously been treated with trastuzumab-based therapy. Before commencing treatment, all eligible patients will have a cardiology review and serum samples taken for correlative studies. Additionally, eligible patients with tumor accessible to biopsy will have biopsies performed.
On Day 1, an intravenous dose of trastuzumab will be administered. If patients have not received trastuzumab in over 1 month, they will receive a loading dose of 8mg/kg. If they have received trastuzumab within 1 month, an intravenous maintenance dose of 6mg/kg will be administered. On Day 2, an intravenous loading dose of pertuzumab (840mg) will be administered. On Day 22, an intravenous maintenance dose of both agents will be given (6mg/kg of trastuzumab and 420mg of pertuzumab). Within three days before receiving treatment on Day 22, a repeat cardiology evaluation will be completed on all patients and tumor biopsies performed on those who underwent biopsy before Day 1.
Both agents will be administered every 3 weeks from then on until disease progression occurs or drug toxicity precludes further treatment. Subjects will be evaluated clinically with physical examination and laboratory assessments every three weeks throughout the study. Subjects will be formally evaluated for cardiotoxicity using quantitative echocardiography before every cycle (or every 3 weeks) or at any point if there is clinical indication. Measurable disease will be re-assessed every 6 weeks (or after every 2 cycles). Exploratory correlative studies investigating downstream signaling markers of HER-2 receptor will be completed on both tissue and blood samples.
http://www.clinicaltrials.gov/html/images/arrow2.gif Eligibility

Genders Eligible for Study: Both
Criteria
INCLUSION CRITERIA:
1. All patients must have histologically documented HER-2 overexpressed invasive carcinoma consistent with breast cancer confirmed by immunohistochemistry (3+) or gene amplification by fluorescence in-situ hybridization (FISH).
2. Patients with locally advanced breast cancer that is inoperable having experienced disease progression despite receiving neoadjuvant chemotherapy. Patients must also have progressed on or after trastuzumab based therapy. Patients may have received 1-3 prior trastuzumab-based treatments in the treatment of their disease.
3. Patients with metastatic breast cancer that have progressed on or after trastuzumab-based therapy. Patients may have received 1-3 prior trastuzumab-based treatment.
4. Patients must be able to provide informed consent.
5. Patients must be aged greater than or equal to 18 years of age.
6. Patients must have measurable disease with at least one lesion that can be accurately measured in at least one dimension.
7. Patients must have recovered from reversible acute effects of prior chemotherapy regimens or radiotherapy to NCI-CTC grade less than or equal to 1 (excluding alopecia).
8. ECOG performance status of 0 or 1 (See Appendix A).
9. Patients must have a left ventricular ejection fraction above the lower limit of normal without clinical signs or symptoms of heart failure, and without recorded significant cardiac event to date.
10. Women of childbearing potential must agree to use an accepted and effective method of contraception during their participation on the trial.
11. Patients must have adequate bone marrow, hepatic and renal function as defined by the following:
- Absolute neutrophil count greater than or equal to 1500/microliter, - Platelet count greater than or equal to 75,000/ l, and
- Serum creatinine less than or equal to 1.5 x ULN
- Serum bilirubin less than or equal to 1.5x the upper limit of normal (ULN) and alkaline phosphatase, AST, and ALT less than or equal to 2.5x ULN (ALT, AST and alkaline phosphatase less than or equal to 5x ULN for subjects with liver metastases).
EXCLUSION CRITERIA:
1. Patients with locally advanced breast cancer who have not received chemotherapy.
2. Patients must not have received treatment with other experimental anti-cancer agents within 3 weeks of starting the study drug combination.
3. Patients must not have received chemotherapy, radiotherapy (other than a short course of palliative radiotherapy for bone pain) or immunotherapy within 4 weeks of Day 1 treatment (with the exception of nitrosureas or mitomycin for which 6 weeks must have passed).
4. Patients must not have oral hormonal therapy within 2 weeks of Day 1 treatment. Fulvestrant must not have been administered within 4 weeks of Day 1 treatment.
5. Present clinical signs or symptoms of brain and/or leptomeningeal metastases confirmed by CT or MRI brain scan. A patient with brain and/or leptomeningeal metastases may be included only if he/she has stable lesions following standard treatment (surgery or radiation), is asymptomatic on neurological examination, is not receiving corticosteroid therapy to control symptoms.
6. Patients must not have an ejection fraction, determined by quantitative echocardiogram or MRI of heart below the lower limit of normal.
7. Patients with uncontrolled hypertension (sustained systolic blood pressure greater than 180mmHg or diastolic blood pressure greater than 100mmHg), significant valvular disease (aortic or mitral regurgitation of 3 or 4+/ 4+ severity or stenosis of either valve), history of uncontrolled cardiac arrhythmias, prior symptomatic or asymptomatic myocardial infarction or angina pectoris requiring anti-anginal medication, poorly controlled diabetes mellitus (fasting blood sugar greater than 200mg/dL).
8. Prior exposure of greater than 360mg/m(2) doxorubicin or liposomal doxorubicin, greater than 120mg/m(2) mitoxantrone, greater than 600mg/m(2) epirubicin or 90mg/m(2) idarubicin.
9. Patients whom have been prohibited from further trastuzumab use in the past due to hypersensitivity reaction.
10. Patients with acquired immunodeficiency syndrome.
11. Serious intercurrent medical illness or subjects on the equivalence of or greater than 20mg prednisone for non-malignant conditions.
12. Pregnant or lactating women.
13. Patients must not have had an active malignancy other than breast cancer, in-situ carcinoma of the cervix or non-melanomatous skin cancers in the past 5 years.
14. Ongoing liver disease, including viral or other hepatitis, current alcohol abuse or cirrhosis.
15. Inability to comply with study and follow-up procedures.
16. Any patient may be excluded from this study at the discretion of the principal investigator if it is deemed that their participation would represent an unacceptable medical or psychiatric risk.
http://www.clinicaltrials.gov/html/images/arrow2.gif Location and Contact Information

Please refer to this study by ClinicalTrials.gov identifier NCT00263224



Maryland
National Cancer Institute (NCI), 9000 Rockville Pike, Bethesda, Maryland, 20892, United States; Recruiting Patient Recruitment and Public Liaison Office 1-800-411-1222 prpl@mail.cc.nih.gov
TTY 1-866-411-1010

I am so sorry, Lisa. I, too have watched your story and your very great attitude. I, myself have suffered a tremendous set back and sometimes feeling that this cancer wants my brain, BAD. I feel great, but know that I am not. I am currently trying Temodar and Xeloda but will attemt the lapatinib trial if this does not work. Best to you, and God bless.

Mickey

Lisa - Please know you are in my thoughts. You will fight this!

Please know I am thinking of you and also pray that you get through this latest hurdle with giant leaps.

Warmly,
maria

Lisa, You are loved and appreciated by so many on this board, and have been such an inspiration! All I can add is my prayers and warm thoughts to go along with all the others. You have gotten some really good advice by some very knowledgeable people, and I can't help but think , being the fighter that you are, that you will find an answer. I will keep praying for you, too! Love and light and Hugs, Tricia

Thinking of you
 

So sorry to hear this news. You are so strong but I know you must be feeling knocked down by all this. The others have great suggestions for other drugs to try, and I hope one (or all) of them will do wonders for you. You will be in my prayers. Jo

Stationary Bike
 

Lisa,

I was sad to read your post, (and a little mad for you) you seemed to be doing so well. You are such a fighter. I am sure you will find a way to get to NED, maybe not on a stationary bike, but I am sure there is some other vehicle to get you where you want to go and where you belong. I can picture you on your stationary bike and can see it just taking off and flying through the air and landing you just where you need to be.

Sending you best wishes, take care.

Joan

Jeremiah 29:11
 

"For I know the plans I have for you," says the Lord."They are plans for good and not for disaster, to give you a future and a hope."

Your strength has inspired many of us.

Keeping you in my thoughts and prayers,

Sassy
________
Laguna Heights Condominium

Lisa,

You are the personification of love and light.

Love,

Cynthia

Lisa, I, like everyone else before me thinks the world of you. You are a inspirtation to us all for the way you approach and fight this disease. Keep fighting and find the "right" combo that is going to work for you. As Ralph Waldo Emerson said:

Do not go where the path may lead,
go where there is no path and leave a trail.

Your a pioneer and my hero. Stay strong.
Love to you my friend. K

Dear Lisa- Xeloda and herceptin have really helped me. Xeloda may be the very drug that will win this fight. Miracles are happening all the time.I got one and I know that you can too. Keep praying hard. I prayed constantly and am now living for the Lord.I want to do all I can to give Him all the honor and glory. You are a great inspiration to all of us. God is using you in ways that we can't even begin to know right now.I will be praying for you and I will remember you at Mass and Communion tomorrow. God Bless and Keep You Always- Cathy1