PET Scan Result

julierene · 03-04-2006, 06:29 PM

So you know the tech can't say anything right? I was getting my 3 month PET scan and I asked the tech if I could see my liver. I have bone and liver mets. He had the full body image up - in black and white (the CT part, the other part hadn't uploaded for another hour). He said he didn't see anything! I was shocked, but tried to maintain my cool for the time being. But then he started really taking an interest in my treatment - which I had hoped was because he was curious about what caused the dramatic results. I am a little gunshy about being excited about it though. I told my husband not to say anything until we get the fine details looked at by the radiologist. I left my number for him to call me, but he didn't. I keep speculating either he was too busy or maybe he wanted my Onc to tell me the amount of things that were left.

Either way, my other PET in December the tech said "don't worry, I have seen women in worse situations do much better after the treatment you're going to get". At the time, she didn't tell me I had liver mets as well as bone mets. What she learned during the scan, was that I had liver spots too. During the short amount of time for data to be gathered, I would assume that both tech's had the opportunity to see or not see what was there.

Can this be? Liver mets are gone? Can the raw data be reliable enough to have hope they are accurate?

Lisa · 03-05-2006, 01:00 AM

Hope, hope and hope some more!

Love and light,

Lisa

madubois63 · 03-05-2006, 07:41 AM

Can this be? Liver mets are gone? Can the raw data be reliable enough to have hope they are accurate?<<

After my reoccurrence (to liver and lungs), I had weekly herceptin and bi-weekly chemo. After three months ALL lesions in the liver were gone. Three more months and EVERTHING was gone....So, YES!!! This can be. I would certainly wait until the reports come back, but even if they are shrinking and some are gone, this is GOOD news.... Keep up the great work!!!!

lexigirl · 03-05-2006, 04:19 PM

Julirene,

I really hope that they are all gone!!

I am saying prayers that they are.

Lexi

Sherryg683 · 03-05-2006, 09:24 PM

Sure praying that they are gone for you, that would be awesome. My liver spots shrunk in half after 6 weeks of treatment and I am hoping that my next scan in 3 weeks will have the same results you've gotten. With God all things are possible..sherryg683

sassy · 03-06-2006, 07:50 AM

Praying the you get good reports!

Sassy
________
WASHINGTON MEDICAL MARIJUANA DISPENSARIES

StephN · 03-06-2006, 10:17 AM

that the tech would be SO bold as to say ANYthing to you about your scan. That is a huge NO NO. They are supposed to be completely poker faced with each patient. After the radiologist reports the findings to the docs, then you are supposed to be notified of the final results this way. Or, your nurse case manager may call if it is good news and you do not need a visit to the onc.

To your question - yes, liver mets can reduce in size and disappear. Happened for me and they have not come back now in close to 3 years. My med onc would pull my scans up on the computer and let me see comparisons while we discussed how treatment was working.

Praying for good news!

julierene · 03-06-2006, 02:12 PM

Well the NEWS is IN!

Liver mets are gone... Bone mets are all but gone. The spot that got the radiation has a little bit of a disseminated look, but he didn't think there was any active material!

Wonder how many treatments we will do just to be safe?

What will the Herceptin treatment be like?

Think I can be a candidate for the Herceptin Vaccine?

So many questions! I didn't expect to be all but NED so soon! After only 8 weekly treatments.

I'm so excited. Guarded... But Excited!

You gals are the 2nd to know, first being my husband! Love, Julie

Sherryg683 · 03-06-2006, 02:55 PM

I am so thrilled for you, it gives me hope. What treatment were you on again? My lung nodes were gone and my liver mets cut in half...I am hoping they will be gone too. I get another scan 3 weeks from now. I am on Taxotere, Xeloda, and Herceptin. It is so good to see the chemo working and so soon. Please keep me posted on what you do now..sherryg683

julierene · 03-06-2006, 03:14 PM

Weekly Herceptin/Taxol/Carboplatin

4gm/kg loading dose of Herceptin
2mg/kg thereafter

3 weeks on, 1 week off - so I go in almost every Thursday

I just responded so well!! My Onc backed off a tiny bit on the Carboplatin and Taxol because after the 5th treatment, my counts dropped so much I couldn't get my chemo on the 6th round. I just got Herceptin. I felt so jipped. I came in on the break week asking for the chemo at that time. Since they had given me the Herceptin alone on the 6th, they didn't want to overload me. I just wonder how much more I will be able to get to maybe keep it away longer. Does it work like that? Like if I take a couple more months (6 treatments), would it give better or same results for recurrence time?

sassy · 03-06-2006, 04:09 PM

Are you asking about taking six more treatments of herceptin or chemo? Not sure which you meant.

Sassy
________
BUTANE REFILL IOLITE

madubois63 · 03-06-2006, 04:17 PM

You really need to speak to your onc about maintenance. Maybe a hormonal will be enough for you?? I Have been doing Herceptin, Caboplaten and Taxatere. I have been NED since last April (geez - almost a year!!), and my onc has me still doing chemo with no plans of letting up. I will continue until this plan doesn't work anymore. Now mind you, I have inflammatory BC and my onc is very aggressive with me. Everything is a guessing game at this point. We are making the new stats for the future...

Maggie · 03-06-2006, 05:46 PM

What wonderful news! I am so very happy for you!

Maggie

Becky · 03-06-2006, 05:49 PM

Congratulations. All your hard work has paid off. Now, I guess, it will only be the Herceptin? And you can take that once every three weeks and its an easy drug to take.

I am so happy for you and happy for some good news too.

Best regards

Becky

Lee · 03-06-2006, 06:01 PM

And have also had a great response. My last CT scan (after 4 rounds) basically showed NED with the exception of a VERY small spot where one of the liver lesions was. My onc thinks it is just debris that hasn't been cleared out yet. I'm stage IV, with a few small mets to liver and 1 to my pelvis.

I'm on weekly Taxol/Carbo/Herceptin, 3 weeks on/1 week off, but even on my off week I still go in for the herceptin. I had a consult at Mayo and this is what was recommended. My onc was going to let me go off the chemo as of my last CT, but the Mayo doc recommended we do 6 rounds if I was tolerating the chemo well, which I am. So I'm going to do the full 6 rounds, finishing up in early April.

I'm so happy for you that your response was so quick, and so complete! That's awesome.

karenann · 03-06-2006, 06:19 PM

God bless you! What wonderful news.

Hugs,
Karen

julierene · 03-06-2006, 09:18 PM

Thanks everyone! I kinda don't know what to think - I am sorta shocked. Up until this point, I never thought I would be NED... Now that I am, I am still a little afraid if someone pinches me I will wake up!

That is interesting that you get Herceptin on your off week. I wonder if my onc would agree to do this for me.

I was hormone negative. But the tumor was grade 3 histologically. So I don't know what will be my options for treatment. So Mayo does 6 more? Would that be 3 chemo and 1 Herceptin totaling 8 weeks?

tammymarie1971 · 03-06-2006, 09:18 PM

Congratulations Julie...We all rejoice with you!!!
Tammy

StephN · 03-07-2006, 11:41 AM

Hey Julierene -
That news makes my day! Knew you could do it!

Just to let you know how things went for me when I was looking like NED. The scan showed some little spots left in my liver (that had been full of BIG spots). He thought that was likely scar left over.
We decided to do 3 more treatments weekly of the Taxol, navelbine, Herceptin. I was getting the Epo and Neupogen to keep my counts up so was doing ok that way. I tolerated the three more treatments and by then my CA27-29 and CEA were all about normal again. Remember that the drugs will keep working in your body to some extent for months, as the half life expires.

I have remained on 3-weekly Herceptin since that time with Zometa for my bones. There are a number of us on this board who have been diagnosed stage IV and are maintaining for years so far on Herceptin alone or with Zometa or a homone blocker if appropriate.

I am also hormone negative so have nothing else but what I have been getting - and it has WORKED! Like you have grade 3 tumor.

You should be able to qualify for one of the versions of HER2 vaccine trials. I am ready to look at a new version that will take those of us with stable or resolved brain mets and long use of Herceptin. Those two things disqualified me from the trials in the past. I am at University of Washington.

You are a "responder" like many of us - so expect to live a long and happy life.

julierene · 03-07-2006, 12:10 PM

It feels SO good to be a "RESPONDER"!!! I was really worried about what the tumor location pain was all about. Now I know it was necrosis pain - for sure!

Add me to the list of Herceptin gals! (I'm also p53 gene mutation positive.)

I just had my CA27-29 tested for the first time about a week ago and it was 15.2. I thought at the time that the number should have been higher with active disease. But hey! Maybe the number was low because there isn't much disease left. Why didn't I think that before? I was just focused on the test being useless. LOL! Go figure! I need to work on my positive thinking huh? :P

I sure would love to be around for a long time! My kids are only 2, 5 and 6. I hope I will be around long enough to see them graduate high school - or longer!

One thing is for sure, you gals are great. I have found so much encouraging news here. When I got back from my initial onc visit, I felt like my world was over. With a little bit of luck, I found this site a few days thereafter and it has been something I check in on a LOT. I'll be a regular... :-) It's a great place to communicate with others who are going through similar situations. I am sorry we are all here, but at least we are here together.

When my mother died 4 months after being told she was Stage 4 and only 33 years old, with bone mets, I was terrified to be Stage 4. Now with Herceptin, I feel like I may be around longer than she was. I'm 31 now, so it's only 2 years away! I think that will be pretty easy now that I'm a "responder"...

Lots of Hope, Julie