Need to help my mom! [In desperate need of Tykerb]

[Bobby]

Hello Everyone:

This is a wonderful outlet for so many victims of this terrible disease. I normally would not be posting on such a site; I'm 23 years old and never had so much as a broken bone to worry about, but on New Year's Eve 2004 my mom fell terribly ill. That evening my entire family could tell that something wasn't right.

That was over 2 years ago and I was 20 at the time. While everyone was in my house getting ready to toast 2004 away and welcome in the new year, my mom was sitting quietly on the sofa: nauseated and tired. She threw-up that night. On New Year's day my dad took her to the hospital.

After going through a litany of tests, the doctor discovered several tumors in her brain. Later we found out that there was one large metastatic lesion to her cerebellum that needed to be removed immediately. Always a tough lady -- the night before the surgery she declined to cancel dinner on our family friends -- she hosted without letting so much as broken china or burnt food ruin the evening.

Later I would find out that my 47 year old mother, who had never smoked a single cigarette in her life, had been diagnosed with Stage 3 Non Small-cell Lung Carcinoma. As of this date, these are all the major procedures she has had to endure:

1. Craniotomy
2. Right Middle Lobectomy
3. Chemotherapy (Cisplatimum, alimtaete)
4. Gamma-knife procedures to multiple small metastatic lesions to brain & pelvic bones.
5. Paracenthesis (5 times)
6. Thoracenthesis to right plural space (2 times)

Currently, she is on 150mg of Tarceva. She appears to have only a partial response to the medication. Her health has deteriorated dramatically since she was first diagnosed and I'm beginning to feel real fear for the first time in my life. I see my father, a doctor himself, tormented on a daily basis by his inability to stop the progression of this disease. I feel completely torn apart by the sight of my dad scattering every which way to bring the slightest bit of hope to my mom. I worry about him, just as much as worry about her. And my sister, how can I make her stop crying?

My father, with recommendations from the oncologist, has been putting off Avastin due to high risk of complications. Our next potential treatment drug is Lapatinib (Tykerb). My mom was taken off the trial, literally days before she was supposed to start taking Lapatinib, because she did not fit THEIR criteria.

I have called GSK and talked to them and so has my father. We have been told that the drug should be FDA approved by March, but I'm afraid we don't have that much time. I'm desperate here and am asking all and anyone of you members out there to help. I have heard about Compassionate Use Programs, but don't know through what channels to go through to get this drug.

Does anyone out there have Tykerb or know where I can buy it? Money is not a problem. I just don't know what to do at this point. My father, who has been a Medical Doctor all his life, cannot so much as get a glance at this new drug. Can someone out there help? Please.

Call me at 650.339.3155 or email at doublecrimson@gmail.com me. I live in the Bay Area. Thank you...

[sarah]

Tykerb is made by Glaxo Smith Kline GSK so I would approach them directly. check on-line for their info. I know they have an EAP expanded Access Program for breast cancer but try contacting them.
I live in France so don't have the US details. With all cancer treatments, you have to weigh the good and bad.
best wishes for your mother's improved health.
sorry I can't help more.
sarah

[Sandy H]

The only other suggestion I can give you is you may want to call Joe and Christine founder of this board. They can be very helpful and are advocates for Tykerb working on our behalf. They have helped several of us to get into a trial. Their number is 760-602-9178. They also live in Ca. Let us know how you make out. Sending you a big hug, keep fighting and we are here to help and listen. Sandy

[Bobby]

Thank you for the information Sarah. We have already tried to approach GSK directly...with no avail.


Sandy, thank you SO MUCH for their contact information. I gave the number to my dad and he is calling them right now...as I'm writing this post. Thank you again and best wishes to all of you. God bless...

[Joe]

Bobby,

Is your Mom HER2 positive? Has she tried Herceptin?

Regards
Joe

[heblaj01]

Bobby,

If your onc (or yourself) is judging response to Terceva by tumour size changes it may not be the best way according to this article:

http://www.sciencedaily.com/releases...0618231618.htm
Tumor Response May Not Be Best Measure Of Efficacy In Non-small Cell Lung Cancer Treatment
So, hopefully your mother may well be benefiting from Terceva in spite of appearance to the contrary,

An other point to check with the onc is the feasability of adding Celebrex to improve response to Terceva & give more waiting time to access to Tykerb once approved by FDA :
http://www.sciencedaily.com/releases...0601091230.htm
Combination Therapy Shows Promising Results In Patients With Advanced Lung Cancer

Regarding new markers under investigation:
http://www.docguide.com/news/content...25718800471E9B
Researchers Find Biomarker of Response to Chemotherapy in Non-Small-Cell Lung Cancer: Presented at ASCO


Other potential treatments:

For non operable patients:

http://www.sciencedaily.com/releases...0717103541.htm

Combined Treatment Extends Life Expectancy For Lung Cancer Patients

Clinical trial:

Introgen Reports that INGN 241 in Combination with Avastin(R) Results in Complete Tumor Regression

Jan 24 2007, 12:00 PM EST Business Wire

Introgen Therapeutics, Inc. (NASDAQ:INGN) announced today the publication of data in Molecular Therapy, the journal of the American Society of Gene Therapy, highlighting the results of a preclinical study with INGN 241 in combination with Avastin(R) (Bevacizumab). Synergistic activity resulting in a curative therapeutic effect was seen in the treatment of lung cancer following the combination of the two agents. In contrast, treatment with Avastin alone demonstrated only minor tumor regression and no animals were cured of their cancer. The study was conducted at The University of Texas M.D. Anderson Cancer Center by Introgen's collaborator Dr. Rajagopal Ramesh, associate professor, Department of Thoracic and Cardiovascular Surgery.

"The outcome of this study is encouraging and for the first time we are able to show that lung tumors treated with a combination of INGN 241 plus Avastin produced complete inhibitory activity," said Dr. Ramesh.

The study shows that the combination of INGN 241 and Avastin is very effective and blocks tumor angiogenesis -- the formation of new blood vessels within a tumor -- that is essential to support tumor growth beyond a minimum size. The results indicate that tumors completely regressed within the first four weeks of treatment and that no additional growth was observed after cessation of therapy.

INGN 241 is a tumor suppressor that has been shown to have potent anti-angiogenic activity and works by inhibiting the production of a key blood vessel growth protein termed vascular endothelial growth factor (VEGF). Avastin is a therapeutic antibody designed to inhibit angiogenesis via a different mechanism by binding to and inhibiting the activity of VEGF. Although inhibiting VEGF activity with Avastin reduces tumor angiogenesis and growth, it does not eradicate tumors. The reported study has proven that the combination of INGN 241 and Avastin results in complete tumor inhibition and regression.
Dr. Sunil Chada, PhD., Introgen's associate vice president of Research and Clinical Development, said, "INGN 241 functions to block angiogenesis by inhibiting production of VEGF -- a critical protein in tumor angiogenesis. In contrast, Avastin blocks binding of VEGF to its receptor. Thus combining these two agents with distinct but complementary anti-angiogenic mechanisms provides synergistic anti-tumor effects and completely eradicates tumors resulting in dramatic cures and improvement in survival."

About INGN 241
INGN 241 is being tested in a Phase 2 clinical trial for patients suffering from advanced melanoma and in a Phase 3 clinical trial in combination with radiation therapy in solid tumors. The mda-7 gene is the active component of INGN 241 and was discovered in the laboratory of Dr. Paul B. Fisher, professor of clinical pathology at Columbia University. Introgen holds an exclusive worldwide sublicense to the Columbia University rights for all gene therapy applications from GlaxoSmithKline.


Expert interview:
http://www.medscape.com/viewarticle/539157
Evolving Data on Antiangiogenesis in NSCLC: An Expert Interview With Dr. David H. Johnson

Good luck in your search.

[Shahyan]

Bobby,

I'd like to suggest putting your mother on Boswella Serrata - a compund which has shown to have an unbelievable effect in reducing mets to the brain. Lani had posted an article on this and I immediately contacted the researcher who was testing this compound and obtained more promising data on this compound. My mother who has breast cancer mets to the brain (the whole brain covered in lesions) and running out of options (had WBR and Temodar) this was a desperate attempt. Her last scan showed 50% reduction and although dr will point to her chemo regime of gemzar, carboplatin and herceptin - I really feel it is the Boswella. If Temodar which is smaller in molecule size than Gemzar and it did not pass the bbb then how did Gemzar do this - seriously search this site or even Lani's post for boswella, contact the researcher and get your mom on this...trust me I was in a similar place 4 months ago when they said Tykerb would be available by Jan 2007 ( I did nto know if we had that much time). Im pretty sure Boswella is not only for HER2+ breast cancer...but pls do the research...if this doesnt help reply to this post and Ill try to help by giving more options

Shahyan

[Bobby]

Joe,

Thank you for taking the time to speak to my dad on the phone a few days ago. My mom has non small cell carcinoma of the lung...so she is not HER2 positive. We're are gearing up to give her Avastin tomorrow (Monday)...as we are growing desperate.



Hebla,

Thank you for providing all those links and information on some possible treatment drugs. It appears that my mom only has what they call a 'partial response' to Tarceva. During the first couple weeks of Tarceva, she had a very positive response. But now the response seems diminshed.

Also, we have been giving her Celebrex in conjunction with Tarceva...but only coincidentally. My dad never heard about the study you posted. He also presented it to our Onc and he didn't know. Perhaps--because of that little post--our onc can do a better job at helping other cancer patients.



Shahyan,

Where can the highest purity Boswella Serrata be purchased? What is the recommended dosage? How can we be sure there will be no drug interactions? My mom is the hospital now for partial intestinal obstruction, vomiting, and possible colitis. On Monday we're probably going to start Avastin...if she can digest her food. We're just concerned about putting too much stress on her body...

[Shahyan]

Bobby,

the article is below:


1: J Neurooncol. 2006 Sep 26; [Epub ahead of print] Links
A lipoxygenase inhibitor in breast cancer brain metastases.

Flavin DF.
Foundation for Collaborative Medicine and Research, 24 Midwood Drive, Greenwich, CT, 06831, USA, Dana_FK@hotmail.com.
The complication of multiple brain metastases in breast cancer patients is a life threatening condition with limited success following standard therapies. The arachidonate lipoxygenase pathway appears to play a role in brain tumor growth as well as inhibition of apoptosis in in-vitro studies. The down regulation of these arachidonate lipoxygenase growth stimulating products therefore appeared to be a worthwile consideration for testing in brain metastases not responding to standard therapy. Boswellia serrata, a lipoxygenase inhibitor was applied for this inhibition. Multiple brain metastases were successfully reversed using this method in a breast cancer patient who had not shown improvement after standard therapy. The results suggest a potential new area of therapy for breast cancer patients with brain metastases that may be useful as an adjuvant to our standard therapy.
PMID: 17001517 [PubMed - as supplied by publisher]

Since my sister who is in the US has been speaking to Dr. Flavin I dont particularly know where she bought the Boswella from. However, email Dr. Flavin and she will let you know. From what I remember she is non-profit and believes whole heartedly in Boswella to cure cancer in the brain (breast or otherwise). Almost all patients that she has recommended this treatment have shown full response in 12-16 weeks. I believe my sister bought the tablets of a generic health store. The current dosage my mom is taking is 800 mg/ day.......and no apperent side effects from the drug. We spoke to our onc for any interactions with chemo and our onc who refuses almost anything unconventional was suprisingly OK with my mom taking this. I hope I am not jinxing my mom, but with God's will I believe my mom will be cured of this wretched disease (Only brain, everywhere else NED)
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[sarah]

Has anyone talked to you about Iressa? I seem to remeber reading about this working with lung cancer.
all the best to all of you during this difficult time
sarah

[hmerch]

Hi Bobby,
I am Shahyan's sister.

I got the Boswellia Serrata from Vitamin Shoppe (just because it was located closest to my place). You should be able to get it from any vitamin store.

Our mother takes 800mg 3 times a day as recommended by Dr. Flavin.

Do contact the Dr. Flavin and she will let you know if this helps with primary brain tumours.

Her foundation's website is www.collmed.com and her email address was on the previous post by Shahyan. If you need her phone number, private message me and I will give it to you.


Hope all this helps & God Bless.
Hina

[heblaj01]

Bobby,
Boswellia as mentioned above is not supposed to have any major side effects on its own. Minor gastrointestinal disturbances or rash can happen.

An other point to consider with the onc is the fact that Boswellia Serrata moderately inhibits the CYP3A4 enzyme that is necessary for the metabolism of some chemo drugs:
http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=pubmed P450
Analysis of frankincense from various Boswellia species with inhibitory activity on human drug metabolising cytochrome P450 enzymes using liquid chromatography mass spectrometry after automated on-line extraction.
This means that concurrent use of Boswellia & one of these drugs may impair the efficacy of the chemo &/or increase its side effects.

Some general info on Boswellia Serrata (which is approved in Europe for some non cancer diseases) can be found in these sites:
http://www.mskcc.org/mskcc/html/69149.cfm boswellia
Boswellia

http://www.drugs.com/npp/frankincense__indian.html
Clinical Overview Uses of Frankincense, Indian


http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
Determination of boswellic acids in brain and plasma by high-performance liquid chromatography/tandem mass spectrometry.

P.S.
Regarding Boswellia pills, look for the maximum percentage of the pure ingredient. For instance the "MAXI-BOZ" 500mg pills supplied by the AOR company contain 65% (or 325mg) of the pure Boswellia.

[heblaj01]

Bobby,
For the brain tumors, here are a few more possible options of treatments which are not yet approved & would likely need to be obtained on a compassionate basis or off label .

The story of Dr Samuel Hassenbusch a neurologist stricken with brain tumor & treated by collegue Dr Amy Heimberger at MD Anderson Cancer center (requires presence of epidermal growth factor receptor variant III, or EGFRvIII for the vaccine to work):
http://virtualtrials.com/news3.cfm?item=3767
A Six-Foot Lab Rat:
There's hope ahead in the battle against deadly brain tumors, thanks to new treatments and brave patients.


http://www.medicalnewstoday.com/medi...p?newsid=42270
Novel Vaccine Curbs Brain Tumor Growth, Increases Survival

http://www.oncolink.com/resources/ar...th=01&id=13844
Tyrosine kinase inhibitor shows promise against recurrent glioblastoma
(AZD2171)

http://syndication.cancerconsultants...cumentId=38017
Xeloda®/Temodar® Effective for Breast Cancer Spread to Brain