Update: bad

Rich66 · 10-30-2009, 03:51 PM

Mom had PET/CT yesterday. Previous PET/CT in June suggested things were pretty quiet in liver, to our elation. Focus since had been on one of the stubborn lung nodules followed by CT.

Well..not only has the lung nodule grown, but now the liver has significant uptake in both lobes.

Clearly Herceptin/Navelbine is not working.

Clearly CT isn't telling the story. Just last visit with NP, she said "CT shows no liver activity". I grimaced..but hoped for the best and angled for a PET/CT this time.

Onc is out of the clinic till next Friday.

Maybe should have waited till Monday to look at the report.

jones7676 · 10-30-2009, 04:39 PM

There are many options out there yet.....lets hope he finds the "right" one....please keep us posted.

Chelee · 10-30-2009, 05:19 PM

Rich, Sorry to hear the news...not what anyone wants to hear. I just wanted to mention when I recently had my PET/CT & it found I had recurred in several areas. The one that wasn't clear was the liver on CT? The PET portion said found activity in left lobe of my liver...but it went on to say no CT correlate is identified. Seems the PET picks up the liver better in both our cases. I'm hopeful that your Mother's onc will find something that will work well for her. Hang in there...I know it's not easy by any means.

Chelee

tricia keegan · 10-30-2009, 05:22 PM

Rich, I can't offer advice unfortunatly but plenty of good wishes and prayers. I hope your Mom finds a better combination to help her beat this and thanks for all your informative posts here

Pam P · 10-31-2009, 04:59 AM

Rich - I'm sorry to hear the scan shows more activity. I hope the next treatment strategy will turn all that around. It's hard to get the reports and then have to wait so long to consult with the onc. on the next plan. Pam

Jackie07 · 10-31-2009, 05:12 AM

Rich,

I hope you will get things clarified Monday.

Here's what I know: CT picks up whatever that looks abnormal. PET picks up whatever that is 'growing' (having metabolic activities)

When my last CT scan showed abnormal stuff in my liver, my doctor ordered an ultrasound and confirmed (because the 'stuff' were not shown on ultrasound) it was hepatic hemangioma, not cancer.

Rich66 · 10-31-2009, 12:09 PM

Thanks folks. I wonder if something should have been added to the Xeloda as opposed to stopping it. It seemed to be doing well except for small progression in the stubborn lung nodule. I wonder if Navelbine was even properly tried since wbc counts ended up causing a 1 week dose to be used over 2-3 weeks. The onc agreed twice to neupogen but felt there were begatives associated with repeated use of it and insted lenthened time between doses. So..did Navelbine fail or was it the administration/management? I thought Navelbine was considered more tolerable...no hair loss etc. After seeing how mom has reacted to Taxol and Navelbine, wonder if the traditional chemos are feasible. Wonder if they are the way to go in general. Really want a paradigm shift...now.

margiermc · 10-31-2009, 12:25 PM

I will pray for her - god bless margie

WolverineFan · 10-31-2009, 07:25 PM

Rich,

Keeping you and your mom in my thoughts and prayers.

Hayley

Carolyns · 11-01-2009, 01:06 PM

Hi Rich,

I am sorry that you got this news. I have a few experiences to share. 1). My doctor would not add anything to Xeloda once it began to fail. 2). I found Navelbine very difficult compared with Gemzar and Xeloda... despite what I had read from others. 3). I had a PET show that things were great when in fact I nearly went into liver failure within two weeks.

Has your Mom had Abraxane? Can they repeat the Pet and / or order another CT? I have about 70% faith in any of these tests.

Take care and I wish you and your Mom well!

Carolyn

Rich66 · 11-01-2009, 02:17 PM

Carolyn,
Wow..proof that there seems to be never ending variation in what people experience.

Good point about Abraxane. I believe she got the regular Taxol. Maybe that contributed to the bad reaction. I believe Abraxane is thought to be more effective too.

I don't know if they can redo the PET/CT. The CT has never been very helpful with the liver. Maybe they would redo/do a chest CT since the PET/CT report mentions possible breathing motion artifacts.

Mom is due back for Navelbine (probably cancelusion) Tuesday. I will make sure they do a liver function test. Onc meeting isn't until Friday.

Please expand the context of what happened with your liver.

Lori R · 11-01-2009, 05:41 PM

Rich,
I am so sorry to hear about your mom's progression. She is so fortunate to have such a well educated loving, warrior son by her side.

Scans and waiting for results is such a terribly stressful time. There is no way that I could have not peaked at the results. (too bad we aren't talking about our Christmas gives stored in the back of the closet) I now schedule my Pet/CTs as late as possible before I meet with my dr. Usually 1 - 2 days.

I noticed that Carolyn mentioned Abraxane. For now, I am an Abraxane cheerleader. My first chemo was taxotere which worked well for 1 yr 1/2. I have found the Abraxane much more tolerable in terms of mouth tinglies, neuropathy and I EVEN have a little of my fuzzy hair. The down side is that as with the other taxanes, it messes with the white blood count. I've been able to receive full doses for about 75% of the time.

I think it is worth asking your Onc about.

As you know...there are A LOT more options out there. Just need to find the right one!!

Sending a big hug to mom.....Lori

Carolyns · 11-01-2009, 07:26 PM

Hi Rich,

Yes it is amazing how everyone reacts different to the same treatment in many ways including the side effects.

As far as the Pet / CT of my liver. We had decided to go that route instead of CTs due to the number of tumors and the lack of ability to tell what was "live" or active. Anyway, everything looked good on the PET CT but then within 2 weeks my bili started rising at about a point per day. It turned out that I had a large lymph node closing the liver bial duct. I would have thought that it would have shown up on the Pet / Ct but it didn't. Anyway since then we use the CT and then the Pet is a back-up plan.

I hope that your Mom is feeling okay and that you get the answers you need soon.

Carolyn

schoolteacher · 11-02-2009, 09:26 AM

Rich,

I am sorry to hear about your mom. Hope you get the answers for testing her this week. I will be praying for her.

Amelia

Ruth · 11-02-2009, 02:14 PM

Rich,
I'm sorry to read about your mom's latest scans. I hope that you find out what you need to this week and the right combination is found for her.
Hugs ~ Ruth

Rich66 · 11-02-2009, 10:22 PM

Circulating tumor test (CTC) result is 3. Was 0 about a year ago. Technically in "normal" range (<5) but moving in wrong direction.

Joan M · 11-04-2009, 02:14 PM

Rich,

I'm sending prayers and good vibes to your mom for a treatment that will shrink those mets.

Joan