Re: My Husband and Cholangiocarcinoma - Part 2

Tom goes in tomorrow for his second round of Chemo 5-FU but I really don't think that they will be doing chemo - after last week all he has done this week is to sleep almost all the time.  I thing the 5-FU really knocked him down.  I'm betting that he will be getting a red blood cell transfusion tomorrow rather than chemo.

Did you check out my tattoo yet?

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Yes, the tattoo is great. You are a brave woman, but then we already know that. Pakcer's look good again! Did I ever tell you that Teddy watches the games with Vince Lombardi? Good luck to Tom tomorrow!

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: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,
What is your tattoo of? I can't get it to load. Good luck tomorrow with the chemo. My daughter, Lauren is also on 5-Fu. She gets it in a pump over 48 hours. She is also on Gem/Cis. She gets really tired for a couple of days and then bounces back. I am concerned about her platelets, though. They seem to drop more and more each time she has labs before her chemo. I asked them if there was anything we could do and everyone says no. Oh well, take care and best wishes.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Cool tattoo! If Tom does get his chemo today then I hope that it goes well, or if he gets a red blood cell transfusion as you think he may then I hope that that goes well also. Are you planning on getting any more tattoos? I got one years ago and it didn't hurt as much as I thought it would.

My best wishes to you and Tom,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

LOL Gavin!  No I'm not "planning" on getting any more tattoo's!  But my youngest daughter thinks I need to get one for my children and says she'll design one and once I see it she thinks I'll want to get it.  But I've got the one I want so am not thinking about getting another.  Who knows eh?

I was surprised that it didn't hurt all that much either.  More like a burning sensation if anything!

I'm sure that whatever Tom has today (chemo or red blood cells) he will do fine!

Hugs,

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Pam:  The tattoo is a pair of Eagle wings, with a green ribbon (liver cancer color) between the wings.  Tom written on the left side of the ribbon and Margie on the other.  Then "On Eagles Wings" written above the wings.

Re: My Husband and Cholangiocarcinoma - Part 2

That is beautiful, Margaret. Good luck.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Ha! As you say, who knows! Especially so seeing as your youngest daughter is on your case now to get another one! Yes a burning sensation seems to sum it up pretty well the feeling of getting a tattoo done. I got one on my arm years ago and I thought that getting the outline done felt the most strange. The filling in of the outline I didn't really feel at all. I think the thought of getting it done is worse than actually getting it!

I look forward to seeing your next tattoo photo on facebook!! And I hope all went well today for Tom.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

Pam

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: My Husband and Cholangiocarcinoma - Part 2

Thinking of you, Margaret & Tom xx

"Time may be a great healer, but it's a lousy beautician."

Re: My Husband and Cholangiocarcinoma - Part 2

Tom's blood work was fine today (I was wrong) and he did not need any red blood cells!  He had his 2nd round of chemo 5-FU today and is really wiped out today. 

1) The anti-nausea drip bag was not working right, so the nurse pulled it out into a syring and 'pushed' it into his port in 30 seconds or less.  Tom immediately felt nausea and thought he was going to throw up.

2) The 5-FU push is supposed to take place 1 hour after the medication bag starts running, but the nurse did not do it until 1 1/2 hours after the bag started, therefore he only had 1/2 hour of the medication (rather than an hour) that is supposed to protect his kidney's after the 5-FU push

For heaven's sake, this is a cancer center where they are supposed to follow protocol to a T and they make mistakes like this? 

They will be getting a call on Monday from me to ensure that it does not happen like that again. 

And I told Tom that he has to learn to SPEAK UP FOR HIMSELF!!! 

He knows the drill and HAS to tell them that they cannot push the anti-nausea medication into his port EVERY AGAIN, and one hour into the kidney medication he has to let them know that it's time for his 5-FU push!  (Wifely talk time again) As he is NOT a little kid and he has to stand up for himself as I can't be by his side for every minute of every day!

Go with God and KEEP KICKIN' THAT cancer!

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret.....There are times mistakes simply can't be made and this is one of those times.  This reminds me of a time when a nurse accessed my husband's port causing him pain.  He, like Tom, did not complain but, he knew that I would do so.  When our loved one's go through so much we simply don

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: My Husband and Cholangiocarcinoma - Part 2

Margaret, I think perhaps Tom likes to see you speak up as you do it so well. It's a shame that it has to be done at all! I'm glad the blood work was fine and now he can chillax for the weekend!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret,
Sorry you had problems today. Marion, thanks for all of your wisdom. We had two things that weren't done right since this whole cancer thing started. When Lauren had her biopsy, everyone kept telling her it would be a piece of cake. Her IV didn't seem to be working really well. (This was before she had her port.) They gave her something in her IV to numb the area. When they went to do the biopsy, she said it was like a needle going through thick, tough, steak and it hurt worse than anything she ever felt. I don't even know if she was numb at all. When she got back to recovery, she was crying so hard because it hurt so bad. The next bad thing that happened was when she went to the lab to have her port accessed for the first time. The tech that stuck the needle in didn't know what she was doing and stuck the needle beside and under her port. Lauren told her it hurt really bad and it hurt to breathe. The tech went and got a nurse and the nurse said if it hurts that bad then it isn't in right. The nurse then put it in correctly. This was in a lab at the cancer center where most patients have ports! Well, you better believe every time Lauren goes to the lab, she requests the nurse that can do it correctly. It's too bad our loved ones have to suffer at the hands of others, but in some ways it makes us more aware of things. Have a nice weekend.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

We are off to the hospital again, we were there Monday cause Tom has something going on in his lungs.  They are going to be culturing a specimen to see if they can tell what it is.  Today is his monthly tube exchange.

Pam - I can't believe that someone who is specifically trained in accessing a port could miss it.  There are three little points that stick up in the center of the port and that is where the needle goes in.  I know that not everyone can access a port UNLESS they are trained on it.  Lauren is correct in insisting that someone who can do it right does it.  Here's to hoping that Lauren does not experience anything like that again!  As for her experience with the biopsy....I am flabbergasted with that one.

I did speak to Tom's pcp on Monday and he said in a chemo situation they should not have done a push with 50CC of the anti-nausea drug.  They only do that in a inpatient or ER situation when it's urgent.  In a chemo situation it's meant to drip in slowly so that the person getting it gets the most benefit from it.  You don't get that with a push.  And he recommended that we question it at the cancer center.

I hope that everyone has a WONDERFUL day.
Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret,
I hope Tom will be alright. As for the anti-nausea drug with chemo, Lauren gets a drug every time that they put right in her port called palonsetron. The nurse fills it into a syringe from a vial and puts it all in at once. Is that what an IV push is? I don't know some of the lingo. Anyway, it is supposed to keep Lauren from getting nauseous for four days. She also takes compazine and ativan as needed. It really works for her. Maybe you could ask about that for Tom. I noticed on the hospital itemized bill it is $1478.00 a shot. It must be crushed diamonds or something.HAHA!! My prayers are with you. You are such an informed and wonderful caregiver. Tom is very lucky to have you. Take care and good luck.

-Love, Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Sorry to hear that you and Tom are back to the hospital again today. I hope the doctors can get to the bottom of Tom's lung issue asap and also that his tube exchange goes well.

My best wishes to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret.....here comes the tidal wave of good wishes ..........
Marion

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: My Husband and Cholangiocarcinoma - Part 2

Thanks everyone.  The tube exchange went wonderful...he has a great doc for that!

Pam:  An IV 'PUSH' is when they use a syring to PUSH any medication (including chem) into the body rather than letting it drip into the body from the bag hanging on an IV pole.  As you watch the Eob's (Explanations of Benefits) come in for Lauren you will be shocked at how much some of the treatments and procedures cost and also at how much the insurance companies discount the claims!  Some are discounted more than 50%, good for the insured...but not for doc/hospital!  And you will learn the lingo - faster than most laypersons, because you have a daughter going through itl  Tom is well pat 1.5 million already and more with his newly discovered tumor.

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret...another successful tube exchange for Tom.  How great is that?
All my best wishes,
Marion

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: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Glad Tom's tube exchange went well.  Hope that he is feeling better today.  Tom and you are true fighters against this terrible disease.  Hugs,  PeggyP

Re: My Husband and Cholangiocarcinoma - Part 2

Happy, Tom's exchange went so well, didn't know he was worth so much money! He is priceless! And so are you!

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: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,
I am glad Tom's tube exchange went well. I am also glad that I have my own private teacher. You!! I appreciate the time you take to explain things to me. I am trying to learn as much as I can. I know I can come to you, Lainy, Marion, and many others if I have any questions and you are right there with an answer. Thank you.

-Love, Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret-Trust me, missing your port happens. I had the same expierence, it was  done by one of my favorite nurses. I had to point out that I didn't think my port was that low, it was so painful I knew something was wrong. Amy was my nurse many times on the transplant floor (I was there 9 times before transplant)and had acessed my port so many times. Poor Amy, she will never live it down, nurses offered to put a bulls eye on area for her!!
That is why this site is so good, there is nothing we can't share or expierence that someone can't relate to!!
Lots of prayers-Cathy

Re: My Husband and Cholangiocarcinoma - Part 2

Cathy:  If anyone misses Tom's port then they would have to be blind!  He is so thin that his port really sticks out and the three points are very prominent!  Think of a 6ft tall man, medium build, but weighing 115 lbs soaking wet.  You can see all his bones, ribs, etc cause he is so thin.  Then there is this large lump in his right chest just below the collar bone.  Can't miss that darn thing.  Now if he were a heavyweight then I could see it.  So far no one has missed his port!  In fact we have to keep a close eye on his port cause he is so thin that they are now worrying about those three points poking through his skin.  If that happens I don't know what they will do except to perhaps install a new one lower on his chest, closer to his 'breast' area, cause there is a little bit of meat there.

You are right, about this site being a place where we can share experiences, rant and rave, ask for suggestions, cry, laugh and love!

Pam - feel free to ask any questions you need answers on, I'm always happy to share experiences, knowledge when ever I can. And if it's something I don't know about, then most certainly there is someone on this site who would be able to answer or give some type of experience!  That is what this site is all about...keeping ourselves educated and informed on this evil cancer!

Go with God and KEEP KICKIN' THAT cancer.  Round 3 of 5-FU for Tom tomorrow.  I hope all goes well this time around.

Hugs,
Margaret