Stage IV CT scan results 3.5 yrs out

jhandley · 02-25-2009, 02:16 AM

Dear all
This week I had a CT scan (which always make me throw up afterwards) and I was very relieved to find out yesterday that it was clear! I had not had one for 9 months so it was preying on my mind.
I was first dx nearly 8 years ago and then had a recurrence with one liver spot 3.5 years ago. After 9 weeks on herceptin and taxol I went into remission and have been NED ever since.

I hear you ask: what do I do?

high dose fish oil equivalent to 2 g DHA

25 grams flaxseed meal in muffin

Q 10 100-200 mg

herceptin 4-6 weekly.

Hope this gives you all hope.

Jackie (down under)

Lien · 02-25-2009, 05:14 AM

YEAH! Great news! I'm so happy for you.

Jacqueline

schoolteacher · 02-25-2009, 05:29 AM

Jackie,

I am so glad to hear your good news. I started my Herceptin for the second year on February the 14th.

Do you take your Herceptin every 4 to 6 weeks?

Amelia

Jean · 02-25-2009, 07:12 AM

Jackie,
Your's is the news we all want to hear! eh?

Congratulations!!!!!

kindest regards,
jean

lizm100 · 02-25-2009, 08:20 AM

Jackie-

Wonderful news!!!!

Shobha · 02-25-2009, 09:47 AM

I am so very happy to hear your news, Jackie! Thank you for sharing it and lifting my spirits!

I really appreciate you adding the things that you do to remain NED. Except for the herceptin, I should be able to follow the rest of your regimen.

Congratulations! May you be blessed with continued NED status!

Sherryg683 · 02-25-2009, 02:53 PM

Congrats, I was really nervous last month at my 3 year mark being diagnosed stage IV. My scans were also clean and like yours has been clean since about 6 weeks into my chemo. Hoping to get to that 3-1/2 year mark like you in July. Here's to responding to chemo. Little confused as to how you do your herceptin though. I take tumeric, green tea and grape seed religiously too superstituous to change anything..sherryg

ElaineM · 02-25-2009, 03:34 PM

Good job. It sounds like you and your docs are doing all the right things.

Lani · 02-25-2009, 04:16 PM

are you ER-?

what were the her2 and ER status of your original tumor AND your liver met, if it was biopsied.

Congratulations again!

chrisy · 02-25-2009, 04:46 PM

Good on ya!

jhandley · 02-26-2009, 02:02 AM

Hi lani
I am her 2+++, ER/PR-
I have the herceptin 4-6 weeks cos I like to live as normal al ife as possible and 3 weeks is too often for me to deal with. I also dont ever want to have a port acath.
Cheers
Jackie (down under)

caya · 02-26-2009, 09:43 PM

Hip Hip Hooray to you Jackie from a fellow commonwealther!!

all the best
caya (in Canada)

Jackie07 · 02-26-2009, 10:08 PM

Congratulations! That's really encouraging. I am copying down the supplement you've listed. Thanks. (What does 'Herceptin 4-6 weekly' mean? Are you still on it for maintenance?)

StephN · 02-26-2009, 10:16 PM

Dear Jhandley -

So glad you stopped in and posted on your continued success.

I am interested in your stepped back Herceptin schedule. Can you tell more about it or is it really just to lengthen your "apron strings" from the cancer center?

I am on a Herceptin Holiday and had thought of seeing about going back only every 6 weeks instead of every three. This is all speculation as I don't know if that would be considered therapeutic, thus insurance paying for it. But something I would like to at least explore.

jones7676 · 02-26-2009, 10:22 PM

Congratulations - I hope you have 50 more disease free years at least!

jhandley · 02-27-2009, 04:47 AM

I don't really have a different schedule , I just make my appointments around my teaching schedule and not closer than 4 weeks. If I go to 6 weeks they want to reload me so I generally make it 4 -5.5 weeks.

I came pretty close to having a herceptin holiday but was talked out of it by a friend who is a doctor. I just got sick of all the travelling and all the waiting around in hospitals.

So I moved to melbourne which cut down on the travelling but I still have to wait 1.5 hours before I have my 30 minute infusion.

My current (new) employer does not know I have treatment and my onc said not to tell them as I have been in remission for so long.

I read a long time ago that the average half life of herceptin is 28 days anyway which is what they calculate the optimum treatment on perhaps?

I figure if I am taking 25 g of flaxseed a day which knocks out 70% of the her 2+ and the Q10 and DHA are looking after my brain then taking herceptin 4 or 5 weeks rather than 3 won 't hurt (and hasn't).

It is a compromise between trying to live as normal a life as possible and living as long as possible.

What I would like to do is get that her 2+ serum test so i can go off herceptin and go back on it if the numbers go up!!! I am waiting for enough data to get down under so we get the test here.

Cheers
Jackie (down under)

Lani · 02-27-2009, 11:41 AM

was your liver metastasis ever biopsied? if yes, what were the her2 and er status of the met?

Congrats again!

chrislmelb · 02-28-2009, 03:37 AM

Jackie i was so pleased to read your continued good health. It is certainly the story we like to hear.
What is the brand/name of your fish oil? i take salmon oil 1000g from Thompsons but i think it is way lower that 2g of DHA.

jhandley · 03-01-2009, 02:09 AM

Hi chris
I take Blackmore's omega brain which per 1 gram capsule has 500 mg DHA and 100 mg EPA. I try to take 3-4 a day. This is equivalent to 2 grams DHA and .4 gram EPA (for 4 capsules).
The standard fish oil capsules have 120 mg of one and 180 mg of the other fatty acids(cant remember which is which) per 1 gram capsule. So this way i only take 4 rather than 16 capsules.
cheers
jackie