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Update on my daughter

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

Hello, everybody. I can't believe I actually got onto the site easily today. I am once again going to try to post a topic - so many times I lose them. I am still so upset about losing all my private messages, especially those from the ones we've lost since I've been coming to the site - Jennie, Lori Lepper (lepperl), etc. that I'll never get to communicate with again in this lifetime anyway.

My daughter had her first PET scan this past week. There is no prior PET to compare it with, so this is a baseline, sort of. She has an area of inflammation in the rectum (diversion proctitis) and it had an uptake of 3.5. She also had a flex sigmoidoscopy and this area is vastly improved from the last one a month ago with complete healing of an ulcer that was there before. Some of the lesions in her liver had uptake of 4.5. There was no CT done this time - the previous CT was about 2.5 months ago and the doctor then declared the cancer "stable." The doctor says this means there is still active disease present and has prescribed 3 more months of chemo (Folfiri + Erbitux) and then re-scan with PET and CT. Still calling the disease "stable." Does this make sense with "active disease" and uptake? The surgeon we saw in Nov. told us he believed her liver tumors had all calcified by the appearance on the CT.

Her CEA at diagnosis in Oct. 2011 was around 3,000 and rose to 6,800 within the couple weeks before she started treatment. It was at 17.1 on Nov. 11 when the doctor declared the cancer "stable" and then went to 10.4 three weeks later, then 10.2 three weeks later, then now 13.4 three weeks later. The doctor says she is not concerned about this fluctuation at this time and believes the cancer is still "stable."

Over the 16 months since diagnosis, she has had no new growth, no new tumors, no new lymph node involvement, etc. The liver tumors are still the ones that were there to begin with and that is the only cancer present. They are now going to review her case and decide what liver targeted therapy to use to try to finish it off. She is doing exceptionally well, has her health, energy, weight back. She was so sick in the beginning.

I you who are so good at all these details will help me understand what I've written above. Of course, I am still scared. In the meantime, she has had something exciting come up and will be going to NY next week with her husband to participate as a survivor model in the fashion week Plitzs charity gala for YES! Beat Liver Tumors. 

My best wishes for all of you and I hope some of you will chime in with your thoughts. Thanks!

Sandy

 

 

Chelsea71
Posts: 1170
Joined: Sep 2012

I've been wondering how she's doing. Knew the pet was coming soon. I'm no genius when it comes to understanding reports, but that all sounds quite positive. Could be a lot worse. Does the doctor feel that the spheres was an effective treatment for the liver mets? Did they shrink significantly?

Wonderful that she is enjoying her life and keeping busy. That is what is important. I know this all must be a terrible worry to you. Scan time is so stressful. Hope you're coping well.

Hopefully some others can help you better understand the details. Thanks for the update.

Chelsea

By the way, does she get erbitux instead of avastin due to the blood clots?

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

No, she is getting it because of her K-RAS wild status. She was getting Avastin even though she had blood clots and was on Lovenox. But it created some real issues to her - several episodes of rectal bleeding, two requiring ambulance rides back to the city with one of them with blood transfusing in the ambulance, etc. And there was the possibility of the tunneling ulcer in her rectum being related to Avastin. These things have all resolved now, no further problems. And the ulcer the GI doc thought would possibly "never" heal two months ago has now completely healed. I hope she never again has to take Avastin.

Sandy

Chelsea71
Posts: 1170
Joined: Sep 2012

She really has been through a lot. Seems like she is better off without the Avastin. Steve and I know all about bleeding rectums. Could write a book. No fun! Glad things are better.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

maybe some diet, exercise, meditation and supplements could help be healthier, if she is not doing this already.

a real interesting update , i hope she improves.

hugs,

pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

maybe some diet, exercise, meditation and supplements could help be healthier, if she is not doing this already.

a real interesting update , i hope she improves.

hugs,

pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

Good to hear everything is stable, I know we'd love to hear it's all gone,  but stable is good.    My scans were stable on folfiri for 10 months, I took several months break off chemo.   and after 10 month break scans showed it was active again.   Have a spleen lesion that was calcified, but lo and behold it's growing.   I'm on Avastin, folfiri and lovenox, keeping my fingers and everything else crossed.....   New York sounds exciting!!!

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Hi Sandy

This is always such a tough topic here...alot of folks get caught up in definitions...I've found that really it can all boil down to semantics.

Everybody wants to hear NED but me...don't like NED particularly.  Never even knew him before I came here all of those moons ago...heard every body talking about it...and asked my onc if I could be NED?

He said sure...I thought oh boy, have I got a story to tell...

I recurred again a few months later...3rd time...

The important thing to remember if you like the word NED....is that it only means NO evidence now...no evidence today...it does not mean that cancer is still not present in your body...even though we know that it can float under the radar...and hold its breath under water...until time to resurface.

NED really only means anything if we make it to 5-years with ALL clean scans...for the entire 5-years...no hiccups of any kind.  Which is the biggest reason the goal is so hard to attain for us...and why it makes it extra special (but still no guarantee) if we can climb enough of those rungs on the ladder to achieve that lofty ambition. 

Otherwise, whether we're 'mopping up' (I use that word loosely) or just in a watch and wait phase...all of us cancer patients are really doing just that...Watching and Waiting. 

Time ulimately writes a part of this chapter as we strive towards our goal.

Recurrence plays such a critical role and defines much our journeys...it's always hard to know when it's coming...or how long it stays away when we can break free from it.

She's done really well with everything and has come such a long way..and I hope this trend continues...and good luck in NYC.  That should be nice for the both of you.

-Craig

annalexandria's picture
annalexandria
Posts: 2255
Joined: Oct 2011

The fact that she has gone so long without new growth seems significant...so often you see people with cancer that just rampages through their system right from the start.  I hope that all of this stability means that they can get things out of there, and get her back on the road to better health, and a cancer-free future.  Hugs and strength to her (and you)!  Ann Alexandria

Lovekitties's picture
Lovekitties
Posts: 2943
Joined: Jan 2010

It is wonderful to hear that your daughter is doing so well.

It is great that she gets to participate in the show.  Please post pics or web page where we can she her strut her stuff!

May all the health news continue to be so good.

Hugs,

Marie who loves kitties

lilacbrroller's picture
lilacbrroller
Posts: 285
Joined: Jun 2012

congrats - that is great news!!  Hope she doesnt wear a brown dress in the fashion show (representing colorectal cancer) - ha ha.  Although after what she's been through, a brown gown could be a badge of honor  (this comes from me being jealous of breast cancer pink)

cheers

Karin

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