Topic: Mom newly diagnosed

Hello all,
I just found this site this morning. I posted on another thread earlier, but realized I should probably go to the intro thread first. My 56 yo mom was Dx with CC in late Oct.  They found the tumor while doing a CT scan because she was having slight abdominal pain and had lost about 25 lbs. in a couple of months. She has a 10 cm tumor in the middle of her two lobes so we were told surgery is not and probably will not ever be an option.  The first onc we saw told her she had 3-6 mo. and needed to "get her affairs in order."  He said that he could do chemo, but it would be a waste of time because it never works.  We were blindsided by this. My mom has never been sick and has been in perfect health untill this.  We sulked around, cried and were devastated for a couple of days when my sister and I decided we just could not live with that attitude in our Dr. so, we did research and got her into MD Anderson in Houston, Tx.  They seem to be much more positive there. He started her on Xeloda 1500mg twice a day and an IV of Gem something once a week. She does this two weeks on and one week off. She will have her scans rechecked in Houston in Jan. He expects that she will do 6 rounds of this regimine and then do 6 weeks of radiation. I told mom, atleast they gave us a plan that lasts longer than the first Drs life expectancy. Has anyone had any experience with MD Anderson? So far, ours has been good, but of course I want the best for my mom. It sounds like after reading other posts that her chemo is pretty standard for this cancer. We are hopeful, but still very scared and confused. We've been told everything from no hope at all to she could live for years by taking a maintainance dose of chemo after this treatment is over. We don't know what to believe, we're just hoping and praying for the best.  This is all brand new territory for us. We don't know anyone with cancer, let alone this kind! So far, she is feeling OK, but she is totally exhausted most of the time.  Any advise or thoughts would be greatly appreciated!

Re: Mom newly diagnosed

Hi Robyn (my daughter is Robin) and welcome to the best little club in the world that no one wishes to join. You are already doing all the rights things. All you can do is read, read, read and be very strong with lots of hope. You do not have to take "NO" as an answer. We are here for you and your mom and as far as I am concerned Robins/Robyns make the best daughters!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mom newly diagnosed

Lainy, Thanks so much for your reply. I am trying so hard to be strong and positive, but I'm still so scared and sad. I still feel like this is a bad dream and I'll wake up at any minute! My mom is my best friend and I can't imagine life without her. My husband is not close with his family, so he's trying to be supportive, but he doesn't really understand how devastated I am. All I know to do is be as strong as I can for her. I'm so glad I found this site. I don't want her to know how scared I am.

Re: Mom newly diagnosed

Hi Robyn,
I'm 46, and when I was diagnosed in August 2007 I had a 6 cm tumor.  I had radiation in Oct 2007 and have been on Xeloda and Gemzar since Sept 2007.  My tumor shrunk to only 2 cm.  Don't give up hope!  Your mom may respond well to the treatment.  You are doing the right thing to stay informed and involved with your mom's treament.

God bless,
Lisa

Re: Mom newly diagnosed

Robyn this is more than a bad dream, its a nightmare! But honestly you are still going through the bad news and soon that scared feeling will turn to strength and fight. Really it will. Your mom already knows you are scared. Everyone reacts differently. We have found n our family that what works for us is to talk about it. We talk out loud and often. Somehow it seems that once a plan is in place you start to move forward. I don't always know where the strength to be a caretaker comes from and just when it seems I am ready to toss in the towel, something turns around to give me some hope. So hang in and stay strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mom newly diagnosed

Hello Robyn

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mom newly diagnosed

Robyn,

Being scared and sad is normal. Dealing with CC is a nightmare that unfortunately you can not wake up & make go away.  This horrible cancer is just as hard on the caretaker as it is on the person who has it. Take care of your self so you can be strong for your Mom. Just be there for her to support her & talk things out if she wants to. I know this all seems so overwhelming right now, so take a deep breath & then just take things as they come & deal with them one day at a time. (Maybe one moment at a day sometimes!) Also remember that you can come here whenever you want day or night to get help and support or even to just vent when you need to.  I will be thinking of you & hoping for the best for you & your Mom.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Mom newly diagnosed

Thank you ladies for your words of encouragement. Know that my thoughts and prayers are with you all.  I did have a couple of questions and maybe a gripe or two smile. Mom went in the day before Thanksgiving to have her chemo port put in. She was telling them from the moment she woke up that she couldn't get a deep breath, but they sent her home anyway. Thanksgiving morning we had to go to the ER where they found out her lung had collapsed because it was punctured during the surgery. She then had to have a chest tube which she said hurt more than anything she's ever had done and she's a pretty tough lady. Now, a couple of weeks later, it still is uncomfortable on that side. Is that normal? Has anyone ever had this experience? I know in the grand scheme of things this was not a big deal, It was just a swift kick in an already sore butt!

Re: Mom newly diagnosed

Oh my! Not had that happen. Once they did send Teddy home with the IV needle still in his arm. I (yuck) pulled it out. Another time he had to have a stent put in near the kidney and the radiologist missed the mark and he had to have it done all over again. Have you noticed no one is ever responsible for what they do? Sometimes a "sorry" would be good. Don't think anything is NOT important, it all is when stuck with this craziness!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mom newly diagnosed

Robyn......  I'm so sorry that happened to your Mom.  I have had several chest tubes and your Mom is right they hurt like the dickens.  Very uncomfortable.  I certainly hope they don't plan on charging her for for the chest tube procedure as it was their practice that caused it.  Has she had it removed yet?  It's quite painful to be honest but only last a second or two when they do the lay pull.  Oh it just yurks me when something like that happens.  My porth cath has been in for three and half years.  Hasn'y been used for months.  They decided they would go ahead an flush it out next week.  Yes, to tou question it will fell arkward and uncomfortable for a few weeks.  She,ll be glad she had it put in though, as trying to access every treatment is so frustrating.  Wish your Mom clearer sailing weather from here on out.
God Bless,
Jeff

Take it to the Limit,One More Time! (Eagles)

Re: Mom newly diagnosed

She had the tube removed two days after they put it in. As for them charging for the chest tube, I'm sure they are going to try. They told us that there is a 1% chance of this happening, so I'm sure they've covered thier butts. Ofcourse they didn't tell us that untill after her lung collapsed. Yes, I have noticed that nothing is thier fault! The surgeon blamed it on mom being dehydrated and he said its hard to put a chemo port in on "bigger ladies." My mom is 5'10" and weighs 160lbs! What a jerk. Thank ya'll for all the good thoghts. It really does help to gripe to people that understand!

Re: Mom newly diagnosed

Hello Robyn. 

This year, and at 38, I was thrust into the caregiver role with my Mom and cholangiocarcinoma.  Simply put, you need to know that you are not alone.  There are so many things to do in care taking, please remember yourself in the mix of it all.  Sometimes it feels good to do things, and research options, and when it does, well do that. 

When you have downtime (seconds and minutes, mostly), remember to do some small act of self-care to bolster yourself.  Your Mom deserves anything you can come up with, but, she most importantly would want you to take care of yourself first.  It was a difficult lesson for me:  Put your air mask on first, then help your Mom like the fabulous daughter I can already tell you are. 

Please know that we are with you, always.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
To all those that helped me through my difficult times;
Family has a new definition for me.

Re: Mom newly diagnosed

ljg... welcome to our site and thank you for sharing your wisdom and showing your compassion with all.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

14 (edited by Robyn Fri, 09 Jan 2009 12:37:49)

Re: Mom newly diagnosed

ljg, Thank you so much for your words of encouragement. You're right, all we can do is take it one day at a time and enjoy the time we have to the fullest! My prayers go out to you and your family. My mom and I will go back to Houston next week so they can check her scans. She just completed her third round of chemo. She did have to stop taking the Xeloda on her last week because she developed hand/foot syndrome. I would really appreciate it if ya'll would send out a prayer that we get good news next week. I am praying for all of you that have lost loved ones to this disease and for all of you who are still fighting the fight!! May God bless all of you and give you strength. I'm hoping for a marvelous new treatment for CC in 2009!