Update on Hope

[hope]

Well as many of you know that my right lung tumors are progressing and they have been that way since I failed Abraxane in Dec.2005. They put me on Xeloda but on a real low dose (2,000mg) becasue I was hospitalized last year after taking the full dose. Well I got the results of the last chest CT scan and apparently that is not working also. The good news is that I am eligible for early access program for Lapatinib.

Basically in a nutshell almost my entire right lung is collapsed and they can't even tell what is tumor or consolidation anymore. Previously my biggest right lung tumor masured 8.6 cm. I also have nodules on my pericardium but no heart problems thank god. I have extreme fatigue, some minor chest pains, and shortness of breath but the oxygen helps that. I aso cough a lot more too. They pretty much have to drain plural effusions every two weeks and get around 1L of fluid. Since I am in such a weak condition they don't want to risk putting in a Plurex catheter or get a plurodesis done. Today I even got more bad news they found some cancer cells in my plural fluid and normally the fluid is clear. Luckily my left lung only has really small nodules only measuring <5mm and bones and brain lesion is stable but still have bad radiation necrosis symptoms.

Since right now they really don't have anything else to give me except for Lapatinib, my onc wants to try Aromasin but still wants to give me this with Xeloda. I thought that I wasn't supposed to take along with chemo unless I was ER/PR + but the onc said that since I had <5% ER/PR at diagnosis it was worth a try until I can get Lapatinib. I will still take my weekly Herceptin. I wanted to know what has been your experience with Aromasin? Did your onc give in conjuntion with a chemo and Herceptin? I also have a pallitive care team now working with my onc. at the cancer center I go to. They are trying to minimize my shortness of breath symptoms and anxiety problems. They did mention that I should think about using a morphine like drug in a very small amount to help my shortness of breath. I am very scared to go on this since I associate morphine is something they give you when you are on your deathbed. They assured me that this might help me and not use a large amount so I don't feel lll the time. I don't know what to do on that so I'm asking if anybody has done this for shortness of breath?

I still am fightting for my life eventhough my life is a mess right now. I pray for some guidence right now until I can get on lapatinib. I do have a wonderful support system and some quality of life left but its getting harder every day. Both my friend and daughter live with me and take care of me so that's good. I can still do some things for myself like climb the stairs to my bedroom upstairs, go to the bathroom, and take a shower but I do use a wheelchair for doctor appointments now due to fatigue and shortness of breath. I just have to keep on living life to the fullest. Take Care,Hope

[Sherryg683]

Hope, I am so sorry to hear what you are going through. You are in my prayers. Do they not want to put you on Taxotere or Taxol for any specific reason? I was on Taxotere, Xeloda (which was hell on me) and Herceptin and it cleared up my lung mets. Please don't give up...sherryg683

[hope]

Hi Sherry thanks for the prayers. I have already been on Taxotere and Taxol. Like all other chemos worked at first but after 6 months the lung tumors progressed. My onc did give me an option of repeating chemos too but only the one that didn't cause harsh side effects and if I can remember I think those were harsh on me. They are worried because I am so weak already so I'm not too sure if repeating chemos right now would be good for me. Hope

[Barbara H.]

Hope,
So sorry to hear that the Xeloda has not done its job, but I hope you receive the lapatinip soon. I admire your courage and will to fight. My thoughts are with you. It probably would not hurt to take a very small amount of morphine to take the anxiety away and help the breathing. It might help you sleep better and increase your strength. I would go over this plan very carefully with your health team. Best wishes and keep in touch. We all care for you.
Barbara H.

[Carol.hope]

Hello Hope. It sounds like you are thinking well about what's good for you. Your daughter and friend are privileged to be part of your life and share their support. Hundreds of us on this site are with you, too, in our prayers and good thoughts.

I have not had your situation, but I had morphine for a month or two, after back surgery to fuse 4 vertebrae with bone from other parts. I can imagine your fear about what it means, but my experience with it was fine. I do not take the usual narcotics because they make me sick, and morphine was much better.

I hope the new drug is the one for you. Keep fighting. More new options will be coming. By best to you. - Carol

[pattyz]

No, Hope, I have nothing to offer you in the way of experience and the questions you have...

Perhaps asking these questions at bcmets.org would give you more of a base of experience to tap from?

I am so very sorry, dear. Hope with all my heart you find some relief and comfort soon.

Keeping you in thought and prayer,
hugs,
pattyz

[Lani]

narcotics(morphine-like drugs) can depress respiration. They work directly on the center of the brain that directs how often you breathe from what I have read. That is why an overdose kills one--you forget to breathe. It is a reason they do not like to give it out in the field during wars as there is not always someone there to check vitals all the time.

Are you sure the reason they want to give you a morphine-like drug is for your respiration? Are they trying to give it to you for pain relief?

I would ask them what the exact drug they want to give you is, what the side effects can be, whether it can depress respiration and if there are not alternatives.

You might also ask if you can get Faslodex(fulvestrant) on a compassionate use basis. According to Dr. Slamon it is the antihormonal which is most likely to be effective in her2+ patients as it is hard for the cancer to become resistant to it as it works by a different mechanism--rather than blocking the estrogen receptor so estrogen cannot act on it, or preventing the conversion of other hormones in fat and muscle (and breast cancer cells itself) to estrogen (via one of three pathways, at least)
it makes the estrogen receptors permanently fall off every cell in the body except perhaps the brain (supposedly the molecule is too big to cross the blood-brain barrier) One does make new cells, but the faslodex (given intramuscularly by injection) stays around for a month and is given monthly. Those cells which rarely divide, like nerve cells will remain effected even if you discontinue the treatment ie, once the estrogen receptor is degraded it doesn't come back and the cell won't normally get replaced.

Aromasin is an injectable medication as well, but it is just an aromatase inhibitor like letrozole or arimidex. It is just a steroidal AI whereas the others are nonsteroidal. This has more to do with how long it stays in your system and that it is best given by injection --it works in the same way as the others generally.

Hope some of this info helps!

Lani

[Mary Anne in TX]

Your situation and your courage are amazing! I can imagine that the decisions you are to make are puzzling and scary too! I so admire your willingness to share your thoughts and concerns with us. Your situation is what I think of so often when I allow myself to slip into the future.
May you find incredible peace as you take one new step at a time. And may you be blessed with exactly the information and the people you need. God bless!
ma

[heblaj01]

In addition to the important reports of those members who have had direct experience with successful treatments here are two links on recently published results of lung cancer treatments some of which worked even on advanved cases with a long history of previous chemo regimens:

http://patient.cancerconsultants.com/lung_cancer_information.aspx

http://www.medscape.com/resource/lungcancer

There must be one or more of them which is effective & safe for your case.

[Bev]

Thanks for sharing. I hope things can turn around for you. Best wishes, BB

[Cathya]

Hope;

I have been wondering how you are doing. What about Avastin? I understand that it is working very well. It must be available in the US ... I just saw this article about Roche introducing it in Europe. I will look around for any research I can find for you....bless you Hope.... Cathy

BASEL, Switzerland, July 10, 2006-Roche announced today that it has submitted a Marketing Authorisation application to the European Medicines Agency (EMEA) for the use of its innovative new cancer drug Avastin in previously untreated advanced (metastatic) breast cancer. The filing is based on impressive Phase III trial data which show that the addition of Avastin to standard chemotherapy as a primary treatment for advanced breast cancer doubled the time women lived without their disease advancing, compared to chemotherapy alone. This is remarkable and the first Phase III study ...

[StephN]

Dear Hope -
I am squashed to hear of your lung mets being so stubborn, especially when the others are stable or a little better.
Wish I had some answers for you - all I can offer right now is a few strong prayers that you can get onto something that will make a difference and get after your disease. ALso make you a little more comfortable.

[IRENE FROM TAMPA]

for what you are going through.

I am going through the same thing with drugs failing me. I am on a "wait" situtation at present for my oncs. office to start up on the EAP program. They have already submitted their paperwork and we are all waiting for Glaxo to ok and send them the drug. I have been off of any chemo for 5 weeks now and am getting a bit anxious. I am working hard on keeping at a peaceful place in my mind that everything will work out.

Has your doctor applied or are you trying to get it through another office? Make sure if that's the way you are going to go (to take the Tykerb) that someone is trying to get you on it since the criteria can be kind of strict.

Good luck Hope and if you ever just want to ' just talk' feel free to contact me anytime.

Take care

[Lisa]

Hope dear,

I'm so sorry to hear about your miserable situation. A couple of thoughts:your Xeloda is a low dose. Has your doc talked about increasing it. If not, why not?

Also, at one time I had the same scare about Morphine. But for the past 3 years, I have taken 15mg morning and night. No side effects at all that I can tell. Although I know your liver is not your primary concern, morphine is better for the liver than OTC pain meds.

I, too, am waiting for Tykerb. My doc said yesterday they (SGK) keep sending him papers to sign. Like has he done previous clinical trials, etc. So it looks I've "passed the grade" and soon as they're satisfied with his (wonderful) credentials, we'll be rolling.

Hang in there Hope.No fear.

Love and light,

Lisa

[heblaj01]

Hope,

Your onc might have an opinion on whether or not the three following prognostic markers may be usefull in your case to choose quickly the best treatment instead of proceeding by trial & error.

The first one called ICAM is a predictor of chemo efficacy:
http://www.docguide.com/news/content...25718800471E9B

Researchers Find Biomarker of Response to Chemotherapy in Non-Small-Cell Lung Cancer: Presented at ASCO

.....June 8, 2006 -- Patients with non-small-cell lung cancer (NSCLC) who have lower baseline levels of soluble intercellular adhesion molecule-1 (ICAM) are more likely to respond to chemotherapy and to have longer progression-free survival, according to findings presented here at the American Society of Clinical Oncology 2006 Annual Meeting (ASCO). "Baseline plasma ICAM is strongly prognostic for survival in advanced NSCLC," said principal investigator Afshin Dowlati, MD, consultant hematologist/oncologist, the Ireland Cancer Center, and assistant professor of medicine, Case Western Reserve University School of Medicine, Cleveland, Ohio. "This biomarker is strongly prognostic for response to chemotherapy." ......




The second marker (Exon 19 ) a mutation of the epidermal growth factor receptor (EGFR) appears to predict high response to EFGR inhibitor drugs such as erlotinib(Tarceva) while patients with Exon 21 do not respond as well.

http://www.docguide.com/news/content.nsf/news/852571020057CCF685257187006FA034?OpenDocument&c=&c ount=10&id=48DDE4A73E09A969852568880078C249

Erlotinib Response in Lung Cancer Patients Highly Dependent on EGFR Mutation Status: Presented at ASCO

......June 8, 2006 -- A small study shows that patients who harbor a particular mutation in the epidermal growth factor receptor (EGFR) known as Exon 19 have a significantly greater survival rate compared with patients who have a mutation of Exon 21.
The clinical importance of this study is that, in time, it may be possible to determine which patients would respond best to erlotinib treatment, and which ones might be better suited to another therapy, since erlotinib treatment would probably produce suboptimal results, according to the researchers.
The study was part of the larger Spanish Lung Cancer Group study (SLADB), which selected only those subjects who were chemotherapy naïve and who had EGFR mutations confirmed by genetic profiling. In all, 22 patients showed mutations to Exon 19 and 18 had mutations of Exon 21. Approximately 70% of the patients were never smokers and 90% had stage IV disease.

Patients underwent a total of 238 doses of erlotinib(Tarceva) 150 mg/day as a single agent (median 6.4 per patient), and though the drug was generally well tolerated, 8 required dose reductions and 7 had dose interruptions......

The third marker is activated nuclear factor (NF)-ĸB :
http://www.her2support.org/vbulletin/showthread.php?t=24632



Finding of a new molecular marker of resistance to chemotherapy in breast cancer
The presence of the activated nuclear factor (NF)-ĸB predicts a response to chemotherapy of 20%, and if the factor is deactivated, response increases up to 91%. This new finding not only predicts chemotherapy response in breast cancer before beginning of treatment, but it also permits to act upon (NF)-ĸB, deactivate it and promote chemotherapy response……….


Your onc should also be able to determine if your are a candidate for one of these two recently reported treatments:

http://www.sciencedaily.com/releases...0601091230.htm
Combination Therapy Shows Promising Results In Patients With Advanced Lung Cancer
......An early phase study pairing an experimental targeted therapy with a common anti-inflammatory produced promising results in patients with advanced lung cancer, researchers at UCLA's Jonsson Cancer Center reported.
Pairing the targeted therapy Tarceva with the anti-inflammatory drug Celebrexincreased response rates in lung cancer patients by about three-fold, said Dr. Karen Reckamp, an assistant professor of hematology/oncology and lead author of the study. ........


http://www.docguide.com/news/content...2568880078C249

Non-Surgical Treatment Gives Lung Cancer Patients Three Years or More

FAIRFAX, VA -- July 117, 2006 -- Fifty-seven percent of lung cancer patients who were treated with thermal ablation survived to three years, two years beyond average life expectancy, according to research in the July issue of the Journal of Vascular and Interventional Radiology (JVIR).

The patients had early-stage, I-II, non-small cell lung cancer (NSCLC). During thermal ablation, an interventional radiologist uses imaging to guide a small needle through the skin into the tumor. Energy is then transmitted to the tip of the needle to "cook" and kill the tumor with heat or "freeze" it with cold.

"Only one-third of patients diagnosed with non-small cell lung cancer are eligible for surgery -- the rest face the reality of having less than 12 months to live," states study author Damian Dupuy, MD, of Rhode Island Hospital. "These new outpatient treatments not only are effective, but allow us to treat patients who historically have no other options. Utilizing imaging and targeted thermal ablation, we can heat and destroy lung tumors, and extend a patients life. As a physician, it's so gratifying to be able to provide a treatment that is so beneficial to patients and so easy for them to undergo."........
Good luck!