Good results once again

StephN · 10-05-2005, 10:49 PM

I am happy to report that my brain mets seem to be very dead at this point. Got the results of last week's MRI. My med onc on Monday was pleased to tell me that I am doing so well that he is not going to order abdominal CT for a year unless my marker numbers change or I have some kind of pain or other complaint. Been so stable that he feels I could use a break from the radiation and contrast. (Since it actually looks now like I WILL live a little longer!)

But I will continue to have brain MRI each three months to monitor that area. This one still shows an area of what is probably radiation necrosis, not active cancer in the spot where the 3 cm tumor was Gamma Knifed. I had a call this morning from my rad onc's nurse who was calling to congratulate me on the results. We discussed semantics like what is the difference between "enhancing" and "flair signal." The rad experts use different words sometimes to describe what they see and it makes me curious!

Anyway, all is well and that is the main thing!

tammymarie1971 · 10-06-2005, 02:24 AM

Thank you for keeping us posted. With every good report others get, we all feel uplifted by it!!! It's amazing what you've been through.
Tammy
ps your attitude must have alot to do with your good "condition"

RhondaH · 10-06-2005, 03:15 AM

That is GREAT news and may you have MANY, MANY more

Rhonda Hoffman

Becky · 10-06-2005, 07:58 AM

Great news Stephanie. You have been though much and came out on top.

Becky

mickey · 10-06-2005, 08:04 AM

Great news Stephanie!!! I hope to have that someday, too.
Mickey

Lolly · 10-06-2005, 08:22 AM

WHOOHOO! I'm sure you are thrilled, as I am for you!

<3,
Lolly

Kristin · 10-06-2005, 08:25 AM

Congrats on your great news, I'm so happy for you

Sounds like you have a great staff at the rad onc office, what did she say was the difference between the enhancing and flair signal. My mom just had a repeat brain MRI and they mentioned those. What does it mean when it isn't enhanced or low. Does an active tumor take up more contrast???

Gina · 10-06-2005, 09:03 AM

Hi, Steph,

I am so happy HAPPY for you...and curious...if you could attribute one NON-traditional medical intervention to your continuing success that you have instigated yourself, besides your positive outlook, what do you think is the one thing you have been doing recently that has also helped make such a positive difference for you?????

KEEP UP THE GOOD WORK!!! I have a friend just finishing all the brain tumor rads at DUKE (we don't think she is her-2 positive but no one will test her...which I can't believe???!!!) and is about to start the chemo for Glioblastoma Multiforme...any advice I could pass on to her...she has had 2 or 3 craniotomies so far..fyi...and has a 4- month old son...very scary case. THANKS...

ALSO, what tumor markers do they follow in you and in YOUR personal experience, have you found the markers to be on target and an earlier alert than scans..

Take care, Gina

StephN · 10-06-2005, 12:01 PM

Thanks to you all for the good wishes and glad to be able to give some hope to others who are looking for happy survivor stories. I found that knowing that I could get over mets by finding out about other's successes was a big boost to me when I was basically given less than a year to live. And that was before there was any kind of on-line support for Her2 pos patients. I had to sort of make my own way through all that and be bouyed up by my own good reports as time went by. The nurses in my cancer center were SO supportive and I was there every week to receive their encouragement.

Gina asked me:
"if you could attribute one NON-traditional medical intervention to your continuing success that you have instigated yourself, besides your positive outlook, what do you think is the one thing you have been doing recently that has also helped make such a positive difference for you?????"

First of all it has always been my nature to be optimistic - and there are times life has NOT been kind even before cancer. I would pull out the "this too shall pass" face and carry on.
You asked about NON-traditional MEDICAL intervention - I don't think any of the medical intervention I have undergone was non-traditional. When weighing whether to have Gamma Knife or open surgery, I researched and found very good results for patients whose tumors are in the Cerebellum, three or less in number and does not have active disease elsewhere. Like a 91% success rate for Her2 positive. I mentioned this to the rad oncs and they were impressed that I had come up with that and said that this was why they wanted to do the GK with me.

I may not have mentioned this one before, but I also use kelp powder several times a week in my cooking - like sprinkled on an egg fried in olive oil or in soup. This has a lot of good things for us, but I know a couple of brain cancer survivors who use it as well. Done this since my liver mets showed up.

But, I think mainly my disease in my brain was controllable due to its taking hold in an area where I was not even showing symptoms and was easily accessible for the Gamma Knife to give them a good dose. Also the sizes, even the large one, was within the guidelines for the procedure. My med onc thinks these cells have been lying dormant in my brain since the liver mets outbreak a couple of years before the brain tumors activated. He figures that is all I will have, from his experience with cases similar to mine. I pray that he is right!

Sorry to hear about your friend battling a brain primary. They can be very nasty. I lost a young cousin to one a few years back. He lived in Boston and let himself be used for experimental treatment. It helped for a while, but the tumor got the better of him.

"ALSO, what tumor markers do they follow in you and in YOUR personal experience, have you found the markers to be on target and an earlier alert than scans.."

Tumor markers have always been good indicators for me. We started taking them during my adjuvent treatment as my cancer had all the earmarks of being aggressive. I even had breast MRIs and a PET scan prior to beginning my weekly Adriamycen and Taxotere adjuvent treatment in Dec of 2000. My med onc wanted to make sure of my staging. I just took all that in stride and rejoiced at each clear result.
After I finished my first round of chemos, I had regular CA27-29 checks at nine-week intervals and NO scans, except for an annual screening chest x-ray, which was negative. The first nine week check the number was 19 and the next time it was 59, coinciding with a recently-developed pain in my right side. Once I got on the trial drugs that count shot up to over 100 at times.
The CEA was normal during all that, but that is the marker that started creeping up last summer and has been on track for the brain mets. During the brain mets episode the CA27-29 has been stable at between 18-24, as it usualy is. My CEA got as high as 18 with the brain mets (5 or less being normal), and is now at POINT SEVEN.
Guess my body just cooperates that way, and I feel very lucky for that!

anne · 10-06-2005, 04:29 PM

Congradulations Steph. Your story is a inspiration to others. So glad you will get a break from scans
Take care,
Anne

michele u · 10-06-2005, 04:57 PM

Steph,
Wow, what exciting news. I love it when this kind of news comes across! How is the vaccine trial coming along? Have you talked to them lately?

Tami · 10-06-2005, 05:06 PM

This is great news...thanks for sharing!!!

All the best,
Tami

Joy · 10-06-2005, 05:33 PM

Thank you so much for sharing this fabulous news. You continue to be that person we all look for. It is so true that survivor success stories, especially for us "tough nut", stage IV gals contribute to our health and well-being so much! I read once, forget which book about cancer, that there is no cancer from which at least 1 person has not recovered. Totally true or not, I don't care. I have to believe that.

CONGRATUALTIONS STEPHANIE!

10-06-2005, 06:20 PM

Dear Steph
Thanks for posting your good news.All the best.
love
linda

mamacze · 10-06-2005, 09:06 PM

Dear Sweet Steph,

What wonderful news; thank you for taking the time to share your cheer and how nice it is to be on the receiving end of such good news. You often bring optimism and hope to the rest of us...thank you courageous fighter!
Love Kim from CT

lu ann · 10-06-2005, 09:27 PM

I'm so glad to hear you have overcome another obsticle. It makes me believe that I too will overcome. Thankyou and God Bless You, Lu Ann.

al from Canada · 10-06-2005, 09:47 PM

Steph,

Congrats from both Linda and I...... BUT: what can I say but we never expected anything different from you. This victory is a personification of everything you are! I think the diarys of your recovery should be required reading for patients and oncologists alike.... and also the diarys of every survivor, past and present, for bringing their personal struggle with this disease to this remarkable forum. Sharing you personal journey brings hope to all who visit us here.

What more can I say,
Al and Linda

Diane H · 10-07-2005, 05:32 AM

Wonderful news! Congratulations and keep on going strong, Hugs, Diane

Esther · 10-07-2005, 07:38 AM

Go steph! It is so good to hear encouraging reports like this. So glad that you are doing so well.

kristen · 10-07-2005, 02:44 PM

Congrats Steph! I am so very Happy for you. You are just a shining example for all of us with or without mets. Thank you so much for sharing your story. I hope you are going out to celebrate this weekend.