Stage IV CT scan results 3.5 yrs out
 

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)

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

Jacqueline

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

good news eh?
 

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

Congratulations!!!!!

kindest regards,
jean

Jackie-

Wonderful news!!!!

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!

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

Stage IV CT scan results 3.5 years out
 

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

Congratulations and a question or two--
 

are you ER-?

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

Congratulations again!

Good on ya!

reply to lani
 

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)

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

all the best
caya (in Canada)

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?)

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.

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

for steph
 

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)

Jackie
 

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

Congrats again!

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.

chrislmelb
 

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