Topic: New chemo regime and update on my husband

Hi guys,

Well we just got home yesterday, 8/30. We headed to Houston with then idea Gordon would have surgery on 8/20 and when that changed the plan of next steps had to change.

So we had appts with Dr Javle and dr. Vauthey the same week of the 20th. Good news is Dr. Vauthey said he is not giving up we are going to reelavuate after the round of chemo. I may be repeatin somethings, give me a little grace it has been a long two weeks.

So Dr Vauthey got on the phone with Javle in the middle of our appt and decided that gordon needed to get the stents out and get the drain that comes out of the skin, to avoid anymore infections and Javle was very concerned about these infections as well. I think everyone knows how dangerous these infections can be for cc patients.

So we went home over the weekend picked up our kids brought them back for the week of removing the stents and putting the drain in, also a picc line.

We he got the stents out on Monday, couldnt get him in to get the other drain in until Wednesday morning, Gordon started feeling bad on Tuesday ran a 101 fever and they loaded him up with antibiotics and postponed the the surgery for a couple of hours. They caught the infection in time. I dodn't know if he would be in ICU when he got out and the doctor warned us and to prepare for Gordon to be in the hospital for a couple of days. But everything went fine, he didn't have a fever after they finished, we love love love the people at MDA!!! They took good care of both of us!!

I had one meltdown in the cafeteria and one in front of the nurse in the room. I thought I was getting sick but I had been so busy running around getting his scrips and learning how to care for the picc and his drain, I had to take classes and a test!!! did great by the way!! but i was just exhuasted and emotional, its amazing what a hug will do smile

He got discharged Friday and we headed the 3 hour trip home, Gordon was in so much pain because of the rough road but as soon as he got home he has been doing great!! Okay some questions...

Here is the chemo regimin that Gordon will start on Wednesday...

Cetuximab(erbitux);5 fluorouracil and Leuconvorin;Irinotecan(camptosar) he will have a pump at home and I think this is a 2 month regimin.

Also Gordon has referred pain in his shoulder anyone else had that?? and do you guys ever keep something extra strong like Morphine if you are the patient has breakthrough pain??

okay all for now!!

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: New chemo regime and update on my husband

Dear Heather....and what do you do for excitement and to keep busy! Cheeze you are doing a fabulous job sure don't know if I could have done as well. Can't help with the Chemo, was a very quiet day but I know some will be along tomorrow to answer your questions. Teddy was on Morphine as it was the ONLY drug that really worked for him and I believe the ONC would RX it for Gordon. At least you are all home now safe and snugglie. I know you will keep us in your loop on Gordon and hope you can enjoy the rest of this long weekend! Sending you massive hugs!

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: New chemo regime and update on my husband

ha! What did i do for excitement I schooled my 6 year old!! Apparently we didn't get finished so that is what we are doing this long weekend smile

Thanks Lainy, you such a sweetheart!

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: New chemo regime and update on my husband

Heather, I hope this roller coaster came to a stop for a while for you! Wow! What a lot to go through this past week or so. I sure am glad to hear the docs seem to be on top of everything.
I'm sorry I can't help with the chemo cocktail.  Didn't have any of them.
I did keep oxycodone on hand... Still do... To lessen any pain. I was allowed 15 mg every 6 hours or so, but I took it in 5 mg increments and tried to take only 5 mg at a time.
I'm sure if you talk to them, they will prescribe something for pain. Since morphine/dilauded are narcotics, they might not agree to that. But I'm sure you can get something. Most docs want us to be as comfortable as possible.
Good luck and prayers that this chemo works and surgery gets scheduled SOON.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New chemo regime and update on my husband

Heather , you are amazing. I keep dilaudid on hand but haven't needed it since my resection. I did have shoulder pain after surgery. I will keep you, Gordon and your family in my prayers.
Hugs
Lisa

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

6 (edited by randigb Sun, 01 Sep 2013 15:06:35)

Re: New chemo regime and update on my husband

Hi Heather,

What a ride!  I had referral pain in my shoulder after a liver biopsy but I didn't worry about it because previous to it, a doctor told me that sometimes if you something bothering your liver, that is where the pain shows up.  I imagine taking out those stents and putting in the drain bothered the liver a little.  I just took pain killers and I was fine.

Best wishes to you and here's hoping the new regime does it's work!

-Randi-

UPDATE:  Wow, I just reread this and i hope it didn't sound like I was minimizing anyone's pain!  I just meant that it made me feel better knowing that it was pain from my liver (in my shoulder) and that it wasn't something more devious.  The pain sucked for sure and I hope you find something that relieves it.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New chemo regime and update on my husband

Hi heather I too had pain in my shoulders one after my biopsies and two I've figured that at this point it's just part of my cc symptoms.  I have been searching for the right pain meds that work for me and I've tried a bit hydrocodone, tramadol, oxycodone, and OxyContin. What i have found best for me is the oxycodone. They rcommended that for breakthrough pain and follow up with OxyContin but I'm managing well with just the oxycodone. Hope he is relieved from some pain soon.

Hope, love, strength...2013 and for the years to come, Porter.

Re: New chemo regime and update on my husband

I have heard of the shoulder pain.  My husband has had a bit, as well
as one of our "online" CC facebook friends.  It seems to be a more common
complaint with CC.

We (so far) only know Gem/Cis chemos...so no help there!

Best wishes on this ride....it's very tough some days!
Hang in there!
Dorien

Re: New chemo regime and update on my husband

This relieves us in away to know the shoulder pain is related to the liver....Randi I knew what you meant, because I keep thinking...is it somewhere else? So unfortunely this is something I guess our loved ones deal with sad And I feel good to know that others have something on hand just in case.

This chemo cocktail must be pretty new, so guys lets pray it works and if it does remember the cocktail!!

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!