Stage 1 to brain mets in 10 months...

[RhondaH]

what are the chances. I was dx 2/1/05 w/ Stage 1, no nodes, ER-PR-, Grade 3, Her2+ (FISH 3.16). Had partial mastectomy 2/7/05, finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan) on 5/18/05, finished 33 rads 8/1/05 and began what will be 1 yr of Herceptin every 3 weeks on 8/18/05. Ever since starting Herceptin I have had on and off dizziness (I see this is one of the side effects). 11/22, after my 2nd WEEKLY dose of Herceptin (onc switched to weekly thinking this would help as my liver enzymes were rising and this did, all back to normal) I began developing eye drainage (onc thought was eye infection, prescribed eye drops, but the drainage is still there) this past week or 2 my vision has become blurred, I've had teeth pressure, ear pressure, light headed, swollen cheek, neck pain (pcp today said that my glands are a little swollen) and drainage into my throat. This past week, my right arm and hand (this is my affected side) has started to tingle a little more than usual (this may be due to the rope climbing my 4 yo talked me into last weekend) than from the neuropathy I got from the Taxotere. I have a ct scan tomorrow night. I know Herceptin doesn't cross the blood brain barrier and also it SEEMS (though isn't the rule) that brain mets occur (with the exception of Christine going from Stage 1 to 4 brain mets 8 yrs after her original dx) AFTER other mets have occured, but how likely would you think this is brain mets from Stage 1, 10 months from original dx? Thanks for the support.

Rhonda Hoffman

PS, On 11/22/05 I had a CT of the abdomen and Chest xray done due to abdominal pain...both were normal.

[chrislmelb]

Rhonda, all i can say is DON'T PANIC. there are so many reasons that all those things could be happening. it takes a while for everything to settle down after surgery and chemo.
Hang in there and give your son a big hug.
Christine

[karenann]

Rhonda,

It's me, Karen, with the same symptoms as you...I have, as I told you before, terrible problems with the following: blurred vision (from the dilated pupil), pressure, swelling, drainage, eye pain, ear congestion and pain, etc., etc. My oncologist, neurologist, and eye doctor all think (after several different tests, including a brain MRI) that these "episodes" are ocular migraines triggered by the Herceptin..

You mentioned in your post that you were going to get a CT scan. Are you getting a whole body scan, or just the brain? The reason I am asking is because my doctor ordered an MRI with contrast. Apparently this is one of the best ways to get a good look at the brain. My neurologist told me the same thing. You may want to ask your doctor about his/her thoughts regarding, MRI or CT scan.

I am sorry you are so worried. Let me know what you decide.

Karen

Stage 1, grade 3, er/pr+, Her2+++

Rhonda if you have not done so and can face it do have a look at the post on omega three omega six and breast cancer, and the breast cancer diet post.

As I am not one of you in terms of being a sufferer I dither terribly about the wisdom of offering specific advice to individuals, but I would agree with a comment made by Adelle Davies a nutritionalist at a seminar Addelle gave which was effectively if you do nothing else sort out your fat intake and use only refrigerated cold pressed inert atmosphere products as far as possible.

The direction of my views is probably evident form my posts, and I am hugely frustrated that more is not put into research in this area by governments. I think for most that have looked into the subject in any detail it is glaringly obvious that this potentially is health gold territory.

It is the one area where all the trials are in the same direction. For most things green tea soy etc you get trials saying yes no and maybe. It is also one intake everbody has in common. We may not all eat soy or drink green tea but we all have fat intake, and it could well be a magor factor in explaining the cancer rate differentials between different global communities. My personal bet it is it is fundamental.

Since I have read all of this I have substantially altered my diet to exclude omega six and try and better than blaance my threes and sixes (and started including greens, garlic and chillies in my juice)(GONE ARE PREVIOUS FAVOURTIES OF THE SHELF fetta in oil, beans in oil, olives in oil of uncertain age and origin, crisps, sunflower oil, safflower oil, grapeseed oil.....,, chocolate made with hydrogenated fats, margerine, pre - prepared sauces - of the shelf curries - I have become a very boring - dont buy it until you have read the label as to oils hydogenated fats etc- which usually results in my wandering round the supermarket looking for a "treat" and ending back in the fresh produce section). I have noticed the difference at lots of levels, lost weight, dry eyes in the morning almost gone, improved digestion....... I have four small sub skin nodules which I have had for years which the doctor said are common (sports impact points I dont know) which were probabaly on balance growing slowly and now appear to be shinking and softening for what it is worth.

Clearly you must do your own search and come to your own conclusions, but if nothing esle I think it is generally accepted that balancing your threes and sixes actively will if nothing else improve your general health, and at the best in the long term it may make a significant difference.


A merry christmas and a good long term prognosis.

My heart goes out to you as a mother in this predicament.

RB

[RhondaH]

Karen, I'm a worry wort. I see my onc and Herceptin tomorrow so I will ask about the CT vs MRI (my pcp ordered the CT). RB, I write this as my tuna casserole is baking and yes, I RELIGIOUSLY follow the BC Diet and I TOO am boring as I cook EVERYTHING from scratch, no processed foods. There ARE current research studies going on discussing not only the role of diet (more specifically the BC diet) and BC recurrence called the WHEL study (Womens Health...I'd have to look up the rest) which Diana Dyer told me about, it is an 8 yr study, but the results won't be out until 2008 and Fred Hutchinson Cancer Center just got a grant from NCI (I think WHEL is through MD Anderson) about diet and cancer. If you let me know how to contact you, I would be happy to send what info I have as I TOO think much of cancer is diet and exercise related (just read on ASCO website today that Mayos found that green tea also helps an adult form of leukemia). Well, casseroles done. Gotta go.

Rhonda Hoffman

Both are NCI funded

http://www3.mdanderson.org/news/archives/whel.htm
http://www.fhcrc.org/about/ne/news/2...ty_cancer.html

[karenann]

Rhonda,

I don't think you are a worry wort at all!! I was really worried, too when I first got all of these symptoms. As a matter of fact, I still worry and when new symptoms, "pop up", I worry again.

Take care and happy holidays.

Karen

[Maryanne]

Rhonda,

I am sure everything will work out fine!!
I also agree with Karen, when I was complaining of headaches I was given a CLOSED MRI with contrast as my onc felt this was the best way of getting an accurate picture.
Please know you will be in my thoughts and prayers tomorrow.

Maryanne

[Annemarie]

Hi Rhonda,
This unfortunately is the rocky road of living with cancer. Once you are diagnosed you must really f/u and get tested if any symptoms persist. Only the tests can tell you for sure. I have had brain mets and NED every where else for over 5 yrs. I had none of the symptoms you mentioned but everyone is different and anything and everything is possible. I will say a prayer that you remain NED.
Warmests regards,
Annemarie

[Joan]

Hi Rhonda,

I can't believe that you could progress to brain mets although I know how worrying and distressing your symptoms must be. I am praying that your symptoms are just the after effects of chemo, stress etc., that your body has had to endure during the past ten months.

Hoping to see you post good news in the next little while.

Kindest regards and good wishes,

Joan