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Daughter having surgery Thursday

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Hello again. I just read and read and read on here. You guys are great and so informative and supportive. I'm so sorry about the loss of Lisa42. Even though I didn't "know" her, it was a real gut-punch. I'm so sorry for her, for her family, and for all of you to have lost her from your lives and "family" here. I've read some of her posts and she was a sweetheart and so supportive of everybody she interacted with. I'm just so sorry.

My 32-year-old daughter, first time mommy with brand new baby, diagnosed with stage IV colon cancer mid-Oct. 2011, has been on Folfox since November. She had 28 radiation treatments in Dec-Jan. Last month a treatment got postponed by a week because her counts were too low. Her CEA went up. Then the next check, two weeks later (two weeks ago), it went up again. This is so scary to me. It "spiked" by 500 points when she first started treatment and they said it was a good sign. Then it started dropping by the hundreds. (She has a sky-high CEA, multiple mets to liver). I worry so much that this could mean the treatment has stopped working. But she is doing so well and is back to her old self with a great appetite, energy level, etc. The CT scan she had last month showed remarkable shrinkage of the liver tumors (almost 60%) and some were gone. The colon tumor appeared to be "dead." The nurses at the cancer center told her not to worry about the CEA fluctuations because it can do that - the CT scan and her improved health show that the treatment is working.

So... have any of you experienced this? I am concerned. I'm also worried because she will be off treatment as she recovers from the colon resection on Thursday, maybe for several weeks.

Another question... the Folfox treatment was so hard on her in the beginning and she had extreme nausea and vomiting, and during radiation it was really bad. She finally got an Rx for the Sancuso patch and it seemed to work miracles with the nausea - it's just completely gone. Her hair had thinnned a lot in the beginning and now it's starting to come back in a major way - lots of short new hair around her face and throughout her head. And she just seems so much better now.

But I just worry and worry. Can she really be "better" now? I worry that her hair coming back and the lessening of side effects of the Folfox could mean it isn't working any more. I am afraid to ask her oncologist - as I posted before, he is not big on optimism.

Any ideas??? Thanks so much. I'll be so glad when this surgery is behind us and they can concentrate on her liver.

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

Thanks for the update on your daughter. I remember you mentioned the surgery was forthcoming. I just wasn't sure if it was last week or this week. As you know, I can't give you any firsthand info on the chemo, just know the nausea and vomiting is not uncommon. It sounds good though that the colon tumor is dead and others are gone or shrinking. I know some will chime in with what they know firsthand about the effectiveness of the chemo versus new hair growth, etc.
Also many members have stressed the importance of placing the stoma in a proper position if she has to have an ostomy.
Please be sure to let us know how the surgery went. We will be thinking of you and your daughter and family.

Take Care,

Luv,

Wolfen

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Thank you, Wolfen. I am a nervous wreck. Trying to pack to drive up there to stay for a while, and the weather is so wishy-washy and I just don't know what to take, so it seems I am taking everything I own as usual.

I am hoping to hear from some of the others, too. She already has a loop ostomy and this surgery will determine if it gets turned into a permanent ostomy or temporary while the colon heals. Surgeon said, "It's a game time decision." I think the location is pretty good - she's had real good luck with it and is used to it.

The whole thing is just a terrifying ordeal and breaks my heart.

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hello from one mother to another~
I can't imagine how frightened you are for your daughter. So glad you could find this site as I did...very informative. Sometimes too informative!

I had Stage 3 rectal cancer with no liver involvement so I will not be able to help you much with your questions~ my cea fluctuated only a small amount so nothing to add there as well. I did not lose my hair, nor did it thin and the treatment worked for me so I would not concern yourself about her hair returning being a bad thing.
Your roal as a mother is so important in your daughters recovery...you must remain positive for her and yourself as well! She is lucky to have you close and involved with her family and treatment plan. Prayers to you and your daughter from Minnesota.

~Minnesotagirl

buckeye2
Posts: 428
Joined: Jul 2011

This journey is so difficult as a spouse, I can't even imagine the difficulty of traveling it as a parent. I will pray for good health for your daughter and strength for you. Lisa

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Let me let you know that the "side effects" have nothing to do with the power of Chemo, it means nothing. I barely had side effects, usually a two day getting the jaw, the cold and the walk thing, but still have most of my hair (it thinned but that was it)so do NOT go by side effects, it means nothing as to how well the chemo is working. HURRAY if the effects are lessening!!!!
Same thing on CEA, until last week it looked like I was heading for more CT scans and going back to Xeloda BUT my CEA is back down to 3.2 and so just sticking with the Avastin (biological warfare against tumor).
Also I had a great appetite except for after surgery, again another GREAT thing, as the body remains more healthy to fight the tumor and better against side effects.
Winter Marie

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Your daughter sounds like she is on the right path. The beginning of treatments are always the most aggressive and toughest. I also have cancer of the colon with mets to the liver and the first treatments were hard especially not knowing what to expect. I've been getting treatment since Jun 09 every two weeks except when counts are too low. They tell me that surgery is out of the question because of the number of mets to liver. So I'm happy that your daughter has a better chance to hopefully get rid of her cancer. Only time and her determination to fight will tell but it is good she is young and hopefully otherwise healthy. I'm praying for the best for her and she is very lucky to have you as a parent.
Jeff

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

I feel reassured. I am back down here with her now and it's always easier when I can see her with my own eyes. Tomorrow we do the bowel prep. Next day, surgery. She is so upbeat and positive and I'm so thankful for this. Makes it easier for the rest of us to be the same way (although I am a wreck but I don't tell her that). I see by everybody's postings on these boards and in my daughter that this diagnosis, bad as it is, sure brings out the best in most people - I have never known such a brave group of people as all of you and my daughter.

I feel better knowing that just because she isn't having horrible side effects that the chemo is still working. I'll be glad when she can get back on it after the surgery.

Jeff, have you checked with other doctors to see about other options for your liver? I know there are many options. But I'm just a rookie at all this. I just know what I read here.

Thanks again, all. I feel better and can try to go to sleep now.

Cathleen Mary
Posts: 827
Joined: May 2011

Your daughter has a lot to live for and that will help her to get thru the hard times. Babies make us smile in spite of ourselves! I am sure that it is a great comfort to her that you are there and will be helping to care for her little one. Prayers for healing for your daughter and strength for who love her.
Enjoy tithe baby....that will help everyone.
Cathleen Mary

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

I'm just wanting to tell you how proud I am of both of you. What a wonderful caregiver you are. Going the extra and seeking out others and finding us for advice/been there done that's....and your daughter...oh my goodness. She is doing great and hanging in there through tough treatment AND being a new mom. It's good she is feeling better. I always felt bad the first week then better the second week on Folfox. Just keep hanging in there and ask whatever question you feel. They are well deserved. With the cancer...it is what it is...and we all handle the treatment a little differently.

Bless you for all you do and hugs to your cancer fighting daughter! Just keep on telling her to fight like a girl and get it done :)

plh4gail

Annabelle41415's picture
Annabelle41415
Posts: 6147
Joined: Feb 2009

Been thinking about your daughter today and hoping that all went well. Hope that her recovery goes smoothly. Let us know how things went.

Kim

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Happy to say her colon resection was a complete success - not nearly as involved as they warned us it might be. And there was no sign of cancer anywhere they looked - liver still involved, we know this, but now we can concentrate on that. What an enormous relief I feel right now. Going to sleep tonight, for sure. I know she will - seems to be comfortable and her husband always stays right there in the room with her for every procedure and treatment. Got her little baby fed and rocked to sleep and just feel so thankful. Thanks to all of you for your support. You're the best. Tomorrow I will spend the day with her and give her husband time to regroup and see the baby. She gets to get up and walk tomorrow - she'll love that! God bless all of you.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Whoo Hooo!! Just read about the complete success. How wonderful. Sleep well dear.
Winter Marie

northernlites
Posts: 96
Joined: Jun 2011

I am so happy for you and your family...
God Bless

Tessa

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I've been thinking about your daughter's surgery today and been sending my best vibes her way and hugs yours as you anxiously waited.
Just wanted to let you know, we all have been thinking about her today.
Winter Marie

sasjourney
Posts: 395
Joined: Jul 2010

I am so glad to hear that the surgery went well and she is on the road to recovery. There are many people with liver mets that are now cancer-free. I will pray that her mets shrink and they can remove them. Stay positive and hug that precious baby.

Hugs,
Sara

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

So glad to hear it's over and all went well. Be sure to tell her we are thinking of her and give that baby a sloppy Grandma kiss. Soon it will be time to kick butt on those liver tumors.

Luv,

Wolfen

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