Update on my daughter

Varmint5

Hi, everybody. I have been so busy and such a basket case I can't even think but I wanted to give you an update on my daughter. Recap: CEA >2,800 at diagnosis early Oct. 2011 - very, very sick, then up to >6,800 by the time she began treatment several weeks later - all of it in my profile. Liver with "numerous" inoperable mets at diagnosis and a 6 week old baby, her first. Began Folfox till it quit working, had colon resection, off chemo for that - CEA back up to 3,000, then Folfiri with Avastin, which lead to life-threatening rectal bleeds, Theraspheres in May and June 2012, then Folfiri stopped in August - onc felt it quit working, had no backup plan. Changed oncologists in a panic.

We went to CTCA, got her right in and continued Folfiri with Erbitux added. Her overall health started improving in leaps and bounds. CEA eventually dropped to 10.2 in January, then started creeping back up. The creeping seemed to be slowing last several checks (CEA every 2 wks) until she skipped 3 weeks for PET scan - CEA jumped to 47.2 on 4/29/13. Back in January 20134 she had her first PET/CT. (Prior oncologist said PET was not necessary, she was stage IV and PET only done for staging, and never did one.) Areas in liver with uptake of 4 at highest, area at anastamosis site where colon resected 3.5, thought to be inflammation.

Oncologist did not want to change treatment, wanted to continue 6 rounds then repeat PET/CT. So scan repeated May 1. They did not do a CT scan between PET scans because they had already done one in October and it appeared the same as the one done at diagnosis at year earlier - liver tumors still there, still same size, so she wanted the PET because it shows activity. Well... this time the PET shows increased activity - SUV up to 8 in colon at original site (recurrence), and two liver tumors SUV of 7-9, one liver tumor 15. More activity. "Progression" in the liver tumors. Same size, more active, but active areas small.

The recent scan results were a mixed bag. The "good news" in all this is that she is still feeling healthy and energetic, still eating well, active, liver function great, etc. The cancer has never spread beyond the tumors that were there at diagnosis, and there are now many FEWER tumors than then. The "dead" ones appear to have calcified.

So this is the new plan. She started back on Folfox last week. Her oncologist says that she has been off of it long enough that it might work again. We are awaiting insurance approval for Cyberknife for the 3 remaining active liver tumors. As soon as they get that we will go for insertion of the gold fiducial markers for Cyberknife. She is seeing a surgeon about colon resection and POSSIBLE LIVER RESECTION!

This is the exciting news - now we are at a point where liver resection is being discussed as a possibility. We were told this would NEVER happen. Some of you might remember that we were given no hope at all, considering the magnitude of her disease.

I am upset at the bad news but feel so much more confidence about plans being in place to eradicate the cancer, actually knowing for the first time exactly where we stand. I am taking it as a good sign that this cancer has never spread. We are going to remain hopeful. But I have to tell you, I have my moments.

All of you are in my thoughts. I try to check in when I can - I want to know you are all still here and doing ok - but I have needed a break from cancer stuff so that I can deal in my head with this current situation. My daughter is the one who is sick, but she has no fear, just confidence, just as she's had from the start.

It's more than I can take, sometimes. Wish I had her strength.

Sandy

 

jen2012

Hi Sandy...thanks for the
Hi Sandy...thanks for the update. Hows the little one? I think hes about a month younger than our baby and hes a handful but such a fun distraction. I wish the news was all positive but try to take the good and leave the rest. Hard i know!! Hang in there...it seems like she has a great team working to make her well!

renw

Really sickens me to hear of oncologists still telling patients that  a liver resection is not possible. There have been many advances in the past 18 months such as a two stage liver resection with portal vein ligation. This can be done even with extensive mets impacting all lobes. eg: http://www.alpps.net

Fucc

What a road it has been. I am

What a road it has been. I am so happy to hear that there may be a surgical option available down the road.  Sending you my thoughts and positive energy. Keep us posted. 

 

Carm

YoVita

Thanks for the update Sandy

I see a lot of good news in your report.  And the plan sounds very hopeful.  It's wonderful that your daughter has such strength.  She's really fought hard and she's always had your back - that's helped make her stronger - yes?

AnnLouise

I think you are very strong....

Look how you have been there for you daughter and the little one. You must feel better that there is a plan.....remember try to go day by day and step by step so you don't get too overwhelmed. Please know that we care and are there for you to share or vent, and of course for questions. When I get so much information sometimes it takes me awhile to process it and put it in its proper perspective. I wish you and your family the very best and I will be thinking of you...your picture always makes me smile! ~ Ann

Varmint5

jen2012 said:

Hi Sandy...thanks for the
Hi Sandy...thanks for the update. Hows the little one? I think hes about a month younger than our baby and hes a handful but such a fun distraction. I wish the news was all positive but try to take the good and leave the rest. Hard i know!! Hang in there...it seems like she has a great team working to make her well!

Thanks, Jen!

Our little guy will be 21 months old the 19th. He is something else - just love him so much! Like yours, he's a handful, but so much fun and a lovely distraction for all of us. I hope you are right about the great team. This is so hard. Here's a pic of our little one:

Sandy

Varmint5

renw said:

Really sickens me to hear of oncologists still telling patients that  a liver resection is not possible. There have been many advances in the past 18 months such as a two stage liver resection with portal vein ligation. This can be done even with extensive mets impacting all lobes. eg: http://www.alpps.net

Thanks, renw!

I read the article you posted about alpps. A surgeon in our state that I had previously spoken with about my daughter is one of those listed as doing this procedure. I'll probably be contacting him again. Great article. And I agree about the oncologists - wish I had known then what I know now. We had also seen another liver surgeon who is head of the liver transplant program of a large university here in MO - this was before the Theraspheres. He wanted to see shrinkage before talking surgery. He said he has done up to 4-stage liver resections with success. We will see where we stand after the Cyberknife. Thanks for sharing your good information.

Sandy

Varmint5

Fucc said:

What a road it has been. I am

What a road it has been. I am so happy to hear that there may be a surgical option available down the road.  Sending you my thoughts and positive energy. Keep us posted. 

 

Carm

Thanks, Carm!

I appreciate your support. Please keep sending that positive energy! I love your nickname.

Sandy

Varmint5

YoVita said:

Thanks for the update Sandy

I see a lot of good news in your report.  And the plan sounds very hopeful.  It's wonderful that your daughter has such strength.  She's really fought hard and she's always had your back - that's helped make her stronger - yes?

Thank you, Vita!

And yes, you are right, she has amazing strength. And the plan does sound hopeful. Thanks for reminding me of the good news that is also there - I see it but the bad stuff just keeps gnawing at me. It helps so much when you and others point me back to the good stuff. I need that. Thanks so much.

Sandy

Varmint5

AnnLouise said:

I think you are very strong....

Look how you have been there for you daughter and the little one. You must feel better that there is a plan.....remember try to go day by day and step by step so you don't get too overwhelmed. Please know that we care and are there for you to share or vent, and of course for questions. When I get so much information sometimes it takes me awhile to process it and put it in its proper perspective. I wish you and your family the very best and I will be thinking of you...your picture always makes me smile! ~ Ann

Thanks, Ann!

I do feel better, somewhat. I am just hoping now when I take her back for her treatment Monday (it's my turn to take her to Tulsa) that her CEA will go down. I am so scared and just want to get on top of this again and move forward. Thanks so much!

Sandy

Momof2plusteentwins

Sandy
Gosh, so hard to take. I have a 29 year old daughter and I can't imagine going through this. I'm glad it is me. Sounds like a good plan is in place. Surgery in the future sounds positive. I wish the best for you and your family, from Sandy to Sandy and nurse to nurse.
Sandy

AnnLouise

Varmint5 said:

Thanks, Jen!

Our little guy will be 21 months old the 19th. He is something else - just love him so much! Like yours, he's a handful, but so much fun and a lovely distraction for all of us. I hope you are right about the great team. This is so hard. Here's a pic of our little one:

Sandy

Adorable.....thanks for sharing the picture

My little granddaughter is 20 months old....such a cute age !!!

wawaju04976

Worse than having cancer is

Worse than having cancer is having a child have cancer. The good thing is so many people on this forum were originally told "no possibility for surgery, terminal, etc. (all negative stuff), only to kick a** and become medically able to have surgery and the other things they were told they were too sick to ever be able to have. Good news, and such determination...I imagine the little guy give her the strength...

 

Good News!!!

Judy

mom_2_3

Sandy

Sounds like lots of good news.  Getting a liver resection would be a great step forward for your daughter.  Her little one looks precious.  I am sure she has many many fun times with him.  My littlest one (who will be 5!!! in November) makes me laugh constantly. 

I hope there are good results with the next procedure and I keep your family in my thoughts.

Amy

Varmint5

Momof2plusteentwins said:

Sandy
Gosh, so hard to take. I have a 29 year old daughter and I can't imagine going through this. I'm glad it is me. Sounds like a good plan is in place. Surgery in the future sounds positive. I wish the best for you and your family, from Sandy to Sandy and nurse to nurse.
Sandy

Thanks, nurse Sandy!

Thanks for your supportive comments. Yes, it is hard to take, but so is having cancer yourself. If I could take this cancer from her, I would in a heartbeat. I am glad you folks are re-directing me to the reality of a good plan being in place. It helps take the edge off. Good to hear from you and I'm glad you are doing so well.

Sandy (the other nurse Sandy)

Varmint5

wawaju04976 said:

Worse than having cancer is

Worse than having cancer is having a child have cancer. The good thing is so many people on this forum were originally told "no possibility for surgery, terminal, etc. (all negative stuff), only to kick a** and become medically able to have surgery and the other things they were told they were too sick to ever be able to have. Good news, and such determination...I imagine the little guy give her the strength...

 

Good News!!!

Judy

Thank you, Judy!

Yes, you are right. And the fact that so many people who were told "inoperable" eventually became operable does give me hope - there are several of those people here! Thanks for reminding me that there was good news in the mixed bag. I'm glad you and your husband are doing well - looked for your post about your scans but couldn't find it to respond, so I'll tell you here. I was glad to read that!

Sandy

Varmint5

mom_2_3 said:

Sandy

Sounds like lots of good news.  Getting a liver resection would be a great step forward for your daughter.  Her little one looks precious.  I am sure she has many many fun times with him.  My littlest one (who will be 5!!! in November) makes me laugh constantly. 

I hope there are good results with the next procedure and I keep your family in my thoughts.

Amy

Thanks, Amy

I appreciate your supportive comments, too. So good to see you on here - your story was one of many that gave me so much hope (and still does). Almost 5! Wow. What an amazing story you have. I hope that you are doing well.

Sandy

janderson1964

You are such a wonderful

You are such a wonderful loving mother with such a strong. I admire your daughter for having sjch a great mother. I am sure you give her strength.

wawaju04976

Varmint5 said:

Thank you, Judy!

Yes, you are right. And the fact that so many people who were told "inoperable" eventually became operable does give me hope - there are several of those people here! Thanks for reminding me that there was good news in the mixed bag. I'm glad you and your husband are doing well - looked for your post about your scans but couldn't find it to respond, so I'll tell you here. I was glad to read that!

Sandy

My PET showed major shrinkage

My PET showed major shrinkage of liver tumors. It had not gone anywhere else, and nothing in my colon. I had the "enema" Thursday to get the go-ahead to have my colostomy reversed. Things looked great, and I will have surgery June 17th!!! All is good!

Judy

Varmint5

wawaju04976 said:

My PET showed major shrinkage

My PET showed major shrinkage of liver tumors. It had not gone anywhere else, and nothing in my colon. I had the "enema" Thursday to get the go-ahead to have my colostomy reversed. Things looked great, and I will have surgery June 17th!!! All is good!

Judy

Wonderful, Judy!

Hopefully your liver tumors will just keep shrinking - maybe you'll even get to operable! Glad to hear all this good news. Best wishes for a successful surgery!

Sandy