I had my brain MRI and liver ultrasound today. The cancer has spread to my brain -- three small spots, the largest of which is 8.1 mm. The liver ultrasound shows that the four small spots that were seen in January have now become five spots, the largest of which is 3.06 cm.
This sounds pretty bad, but my oncologist says she's not as worried about the brain tumors as she is about the lung and liver spread.
I've read somewhere that humans only use ten percent of their brains anyway. And I probably use even less than that. If I'm lucky, those tumors are in the part of my brain that makes me care about silly things like whether my kids are wearing the right shoes or brushing their teeth in circular, rather than back-and-forth motions.
The good news is, I have yet another excuse for my absent-mindedness and forgetfulness, so if you're still waiting for that thank-you note for last year's Christmas gifts, you might have to give up on that.
On a more serious note, I need some help. I need to decide in the next few days (preferably, by tomorrow) what I'm going to do about further treatment. Here are a few of the options my oncologist has suggested, in no particular order of preference:
1) Gamma Knife to remove the brain tumors.
2) Apply for clinical trials for new drugs in the U.S. (anti-HER2 protocols: HSP90 inhibitors and T-DM-1 antibody/chemotherapy drug).
3) Different chemo drugs in Singapore: Gemcitabine, Capecitabine, Taxotere, Abraxane with or without Herceptin or Tykerb.
4) Different combo of drugs: Tykerb + Herceptin + Gemcitabine or Herceptin + Gemcitabine.
Michelle, Tony, and I will probably be up most of tonight researching all of these options on the Internet and whatever books we have on cancer in my personal library.
If any of you could help research some of this stuff and send it to us, it would help a great deal. Better yet, if any of you reading this are in the oncology field or know someone who is and can get their opinion on these or other options, I would be extremely grateful.
I'm not too upset or shocked or sad. I had a gut feeling the cancer was in my brain. I felt it had spread to my liver and lungs. So I'm okay with this. I'm in information-gathering mode now. Now that I know more about what I'm dealing with, I need to find a way to extend my life (and quality of life) for as long as I can.
I'm worried about my family and friends and how they'll handle this news. My advice is... be sad, angry, whatever you need to do, then get over it and help me do some research.
My thinking is.. I have a problem. Face it, study it, find a solution. Or at least die trying. And enjoy my life while I still can. So we're going out now to have some burgers and beer before we start our cram session on "How to Save Shin's Life".
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You never cease to amaze me! No matter what the news, you always have the best attitude. I love you so much!!!!
Gamma Knife:
http://www.virtualtrials.com/gamma.cfm
http://www.irsa.org/acoustic_neuroma.html
Your grace in the face of all this is simply amazing.
Hi Shin and everyone who may be doing research. I’ll be searching tonight but another thought has come to mind. If anyone finds mention of an article or a study that they can’t get a copy of, post it here. Christine and I are in the Boston area and I’m sure if we pound on the doors of one of the million university libraries in the area, we should be able to get a copy. Even if they only have paper copies, we could make copies and fax them over.
Love - Jamie
Hi Shin,Tony and Shell,
A couple of thoughts immediately when I read this. 1)Time to apply for clinical trials and crosss countries could be stressful. Check in with your oncologist for the timing and how fast she can move that. 2) Is it necessary to do anything with the brain at this stage? You mention quality of life, maybe another hospital visit and treatment may not be a priority given that the lung and liver are more of a concern 2) Ask your oncologist for the regime with the least amount of side effects. At this stage would this be the main objective so you will be able to live your life as quality time with your family?..... as opposed to being too ill to enjoy them?
Love and peace to you,
Annie xx
Dearest, dearest, DEAREST Shin........ I can't even think of anything suitable to write here at the moment.........so much to digest and consider........instead, for now I shall close your blog and head off to research as much as I can to hopefully help provide you with some information you have yet to have found.......My heart is filled with thoughts of you ALL ....a truely exceptional family .......... All our love to you all Leigh and family xx
http://www.cancerhelp.org.uk/help/default.asp?page=10568
Hope this helps....
Love Leigh x
Tykerb (lapatinib) may be effective at shrinking breast cancer tumors in the brain, researchers say. This drug is called a targeted therapy because it can kill cancer cells and leave normal cells alone. Tykerb targets HER2 and EGFR, two proteins that function abnormally in breast cancer cells.
A study was conducted that included 241 breast cancer patients with brain metastasis that continued to progress after radiation treatment and Herceptin therapy.
The study concluded that nearly half of the patients, 46 percent, experienced at least a twenty percent reduction in the size the the brain tumors.
The researchers concluded "Tykerb has promise in the treatment of brain metastasis".
Love Leigh x
Tykerb (lapatinib) may be effective at shrinking breast cancer tumors in the brain, researchers say. This drug is called a targeted therapy because it can kill cancer cells and leave normal cells alone. Tykerb targets HER2 and EGFR, two proteins that function abnormally in breast cancer cells. A study was conducted that included 241 breast cancer patients with brain metastasis that continued to progress after radiation treatment and Herceptin therapy. The study concluded that nearly half of the patients, 46 percent, experienced at least a twenty percent reduction in the size the the brain tumors. The researchers concluded "Tykerb has promise in the treatment of brain metastasis". ...
Love Leigh
http://patient.cancerconsultants.com/DrugDictionary.aspx?DocumentId=695
This is a great source of information on cancer fighting frugs - great overview of Gemcitabine in particular.
Love Leigh
http://www.virtualtrials.com/gamma.cfm
Love Leigh
http://www.taxotere.com/oncology/landing/lung_cancer.aspx
Love Leigh
PS - I so hope something here will be of help?! :-(
There is so much information out there that its hard to decide what is useful and what isn't when it comes to making such a huge decision......... Apologies if anything I have found is a waste of your precious time...
Love always
Leigh x
I am no Dr and I am sure there must be a reason why NEXAVAR doesn't appear on your list of drugs to research but time and time again I see it turning up as a positive treatment possibility. I am therefore cutting and pasting some info for your digestion just incase its a possibility thats been "missed"...........Nexavar, a pharmaceutical drug designed to treat liver cancer, had a late-stage trial recently cut off and disbanded.
But, the reason is not what you think: the trial was ended because the results of patients using the drug were all so positive that a further continuation of the trial was not needed.
The trial (which was classified "Phase III" -- the 'final' stage) was conducted on over 200 patients in China, Korea and Taiwan. All patients took Nexavar and all were suffering from hepatocellular carcinoma -- the most common liver cancer.
Still, it's odd that any trials were ended due to excellent results. Even if that is so, shouldn't all drugs complete a start-to-finish trial period, regardless of success rate?
Love Leigh
I'm sure you have already found a lot of the same information, but i figured it couldn't hurt to send you some web sites.
http://www.cancer.gov/
click on the clinical trials tab and you can search for breast cancer trials in the US.
clinical trials have multiple phases.
pre-clinical/phase 0 determine if drug warrants further study
phase 1 usually healthy volunteers, test safety of the drug
phase 2 give the new drug to healthy volunteers and patients, determine dosing of the drug and how well the drug works at the dose
phase 3 give the new drug to patients, compare new drug to current treatments to show the new drug has added benefits
phase 4 post-market studies - after drug is approved and on the market, companies continue to monitor for safety of the drug
for cancer drugs and other diseases where patients do not have other options, patients can sometimes join a phase 1 trial. however, at this point, safety (and efficacy) of the drug is unknown
http://www.gemzar.com/index.jsp
info for gemcitabine
http://www.fda.gov/CDER/consumerinfo/druginfo/Xeloda.HTM
info for capecitabine
http://www.taxotere.com/consumer/Breast_Cancer.aspx
info for taxotere
http://abraxane.com/
http://www.herceptin.com/herceptin/patient/index.jsp
I think that if you want to participate in trials that doing so in Singapore is better than looking to the US.
You probably have this link already.
http://clinicaltrialssearch.org/singapore_clinical_trials.html
Love
Matthew
http://www.expressnews.ualberta.ca/article.cfm?id=8153
this university started clinical trials on DCA in September 2007 -
Dear Shin, Tony and Shelly
Shelly sent us your blog to keep us updated, we thank you for that.
Not much help with the research stuff, sorry!
We do though send to you all our love, good energy and support. You are an amazing lady and an inspiration to many.
Love Kathy, Brett, Sarah and Daniel
Shit Shin, This is Serious Stuff!! (Sorry have the S word on my mind - Nicholas is learning the letter at school)
I emailed Mick (my husbands) sister today she is a Dr. in Oz and heavily involved with the Breast Cancer Council. Dr Megan Keaney is her name.
Here is some info from her (I'll just cut and paste)
Dear Abbe
I would recommend to her that she go to nbocc.org.au ( which is the
National breast and ovarian cancer centre). This has lots of credible
information about the proposed therapies. All of the information is
'evidence based' meaning that it is the most reliable information
available. NBOCC does this by reviewing the literature about treatments
and using experts to critically analyse it . It is much more
authoritative than information from lay people, drug companies ( vested
interests) and unknown sources that might sound good but you don't have
any idea of their bona fides. This is the problem with a lot of web
based information. NBOCC is funded by the Australian Government and one
of its principal roles is to ensure that clinicians and consumers have
access to the most up to date and reliable information.
Having said this, I suggest that you friend is best advised to rely on
the advice of her drs but doing some research on the internet may give
her the confidence to ask questions and then make her own informed
choices.
If she goes to the website she can follow the links. She will know that
she is looking for information about metastatic breast cancer.
I hope this helps. Please feel free just to forward this email to her
Regards
Megan
Hope you enjoyed your beers last night. Once I've had this baby (hopefully next Monday) maybe I can join you for one.
XX
Hey Shin - I've never seen strength like this. You've already won the battle. I'm honoured to have met you even if it was for just a short stint at CNBC. Here are some names of people you may wanna talk to. I don't know them personally...but I'm hoping they'd be able to help you out.
Brian Leyland Jones
Professor of Oncology
McGill University
1-514-398-4455
Bonnie Glisson
Head of Med. Oncology
University of Texas
1-512-475-7440
Nancy Davidson
Bloomberg School of Public Health
Professor of Oncology
davidna@jhmi.edu
1-410-955-8489
Gerald Hanks
Fox Chase Cancer Centre
Chair of Radiology & Oncology Dept.
1-215-728-2811
Dr. Manuel Hidalgo
Associate Prof: Oncology
Sidney Kimmel Cancer Centre
1-858-450-5990
Joyce O'Shaugnessy
Cancer Researcher
Texas Oncology
1-512-302-1771
Our thoughts are with you.
Rethi.
Dearest, dearest Shin,
I’m utterly devastated to read the latest
I’ve just emailed my friend who had a brain tumour removed at ME in the summer. Not sure about the exact technique but know radiation was involved. She’s now fully recovered and back in SA.
I will also check out the story about the lady in the local hospice I told you about before I went on my trip. Miracles do happen
My love and my prayers
EXxxxxxxx
I"m reading and learning and researching as best I can at 2am! Jetlag helps. Fight on. We're on your side. Keep up the humor :-). Lets not give up the fight. Love you, Skylar's mommy.
Here are some other links that may be of use.
http://www.mayoclinic.org/stereotactic-radiosurgery/gamma-knife.html
http://www.medscape.com/viewarticle/456140
http://www.jonathanborden-md.com/GK%20dosimetry.html
Do you know about this message board? :
http://members3.boardhost.com/recurrence/
xo,
Phil
qodkk
Hi Sweetie
I've tracked down a lady who swears by Essiac tea - the herbal mix which as old as the hills. She lives in Singapore, is now five years past BC (stage 3, grade 3, lobular, ER positive) and sipped it throughout chemo and rads treatment. She has friends who've used it when the chemo failed and are alive and kicking today. If you want to meet her, talk to her, just let me know.
Miss you!
Elainexxxxxx
PORTRAIT............
As you know, I "dabble" a bit with "portrait work". I simply adore your "family portrait photo" with Toby in raptures! Would you mind if when time allows I produced something with it? OR...better still........do you have a photo that you would like me to work from instead?
Loves ya
Me!
PS - My word verification is "RUDITY"?!?!?! Ha ha
What Cancer Cannot Do
Author: Unknown
Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.
please make sure you give tykerb a chance to shrink your tumors in the brain. herceptin can not do that because the molecule is too big and tykerb is a small molecule.
God Bless
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