Topic: First time posting

Hi,

This is my first time posting to this forum and I’m looking for some support, ideas, and help in dealing with my husband’s cholangiocarcinoma. DJ is 65 years old and before this was in general good health.

DJ turned yellow because of the bile duct obstruction just before Christmas. He was operated on at Strong Memorial on Feb. 6th, 2013. Dr. Schoeniger removed half of his liver, his bile ducts, gall bladder, and three nodes. He reconstructed his bile ducts with part of his small intestine and had to reconstruct a blood vessel that was also involved. After the surgery, the doctor said that there were negative margins on everything they removed.

The pathology report showed that two of the lymph nodes were cancerous greatly changing DJ’s prognosis from 50/50 to 90/10.

Three months after surgery, they started chemo. The plan was to do 4 cycles where DJ received one infusion of Gemzar a week for three weeks with one week off. At first, they also wanted him to take Xeloda every day. This regimen immediately proved to be too taxing and they had to stop with the Xeloda after the first week. His white blood cell count dropped to a dangerous level.

The first cycle, DJ was able to tolerate one infusion of Gemzar and Xeloda skipping the last planned infusions. He was off everything for 2 weeks in order to get his blood work to improve. The 2nd cycle without any Xeloda, he was able to tolerate 2 regular dosages of Gemzar. On the third cycle, he was able to tolerate his all three infusions but they reduced the amount of Gemzar he received each time. So, the first infusion in the third cycle, he received less Gemzar than in the other cycles, the 2nd infusion was a little less than the 1st infusion, and the 3rd infusion was a little less than the 2nd. The 4th cycle, he was able to tolerate his first 2 infusions but his white blood cell count was too low for the 3rd infusion. I don’t know what the dosages were.

DJ generally feels pretty good. The 2nd day after chemo is his lowest point and he will be fatigued and feel kind of blah. He hasn’t had any nausea but he had bad heartburn and has been taking Prilosec prophylactically. That has worked well. Mostly, his body feels beat up and sore but he still is very active going biking, swimming, or kayaking several times a week. Sometimes he feels as though he doesn’t have the breath to continue and he has to sit down and recharge. The day or so after chemo, he’s pretty foggy and sometimes acts confused. When he has been off for a couple weeks, his body really gets strong and he can pretty much do whatever he wants.

The week after his last infusion, he had a scan. He had to drink something for an hour before the scan, then do the scan. At that time, June 30th, the scan was clear, no signs of cancer.

He had a week off before starting radiation therapy. He is now at the end of his 4th week out of 5 weeks (25 treatments) of RT. In addition to RT, he takes 1500 mg of Xeloda twice a day M-F. He is taking compazene for nausea and 40mg of omeprazole for heartburn. In general, he feels OK though more fatigued than usual. On two different occasions, he picked up some kind of virus with fever and vomiting but was able to recover pretty quickly.

His appetite has been pretty good. He has been able to maintain his weight with minor fluctuations. Sometimes he doesn’t feel like eating but will try anyway. We have maintained a mostly vegan diet for the last 4 years but lately, DJ will occasionally eat meat.

I am very interested in what others have experienced.

Thank you in advance for your incite.  Jane

Re: First time posting

Dear Jane and DJ, welcome to our extraordinary family but sorry you had to find us. On the other hand Congratulations on the surgery, you are now a CC survivor. We love the word surgery. I know there have been some other surgeries just about like what your Hubby had and hopefully they will come along and help out. My husband had a Whipple which is a different surgery. It sounds like Hubby is doing good. On the eating, I am glad he is eating some meat as it is important for iron. After these surgeries eating habits really change. My only suggestion would be instead of big meals to do more grazing during the day. Teddy loved the Carnation vanilla Breakfast and I would blend in a banana. The shake has all the needed nutrients and can take the place of a full meal. Best of luck and please keep us posted on DK's progress.

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: First time posting

Dear Jane and DJ
As Lainy said welcome to the best little family no one really wants to be a part of. Your husband's story sounds exactly like my husbands although more recently on our end. My husband turned yellow the middle of May and on June 4th he had a 14 hours surgery to do the same thing....removed about 60% of his liver, bile ducts, gall bladder along with seven nodes. Margins were clean and only one of the nodes was positive.
We started Gemzar and Oxaliplatin chemo and have had three rounds so far. We are doing one every other week which seems to be okay. He gets tired at times but weight is stable and he's still eating good. No nausea.
Out biggest problem in the fact that he keeps getting blood infections. He has had three so far with the last one being the first week of September. So far no one has been able to find the source and they are talking about doing an ERCP to look at where his bile ducts meet his intestine.
As far as weight my husband lost 50# after the surgery which he thankfully had to lose. Protein is very important at this point along with just keeping him eating. We did a lot of protein shakes.....frozen fruit, couple of scoops of ice cream, milk, protein powder and yogurt....throw it all in the blender and blend. He drank one big glass every evening and that seemed to help. I am sure that you can substitute around for a vegan diet if needed. Another suggestion might be to see if there is a dietician with the oncologist or see if they can make a referral for him.
The other suggestion I have is to make sure he takes his post chemo meds the way he is supposed to. My husband has a tendency to skip them because he feels good.
I am glad your husband has enough energy to keep going like he does...mine still is having troubles with fatigue from the surgery....I have watched WAY too many old Western reruns right now.
Good luck and keep us posted on your husband's progress.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: First time posting

Hi Jane,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about DJ's diagnosis. But I am glad that you have joined us all here as you're so in the right place for support and help and I know you will get loads of each from everyone here.

Thanks for sharing what DJ has been through, he has been through a lot hasn't he. That's great that he was able to have the surgery as so many after diagnosis are not able to have that. My dads first symptom was also the jaundice and he was not a candidate for surgery. Sounds to me like DJ is doing quite well after his surgery, chemo and radiation. Considering all of the treatments that DJ has been through it is no wonder that his body feels a bit beat up and fatigued with everything that he has gone through. But from what you say it sounds to me like he is still leading an active life and that is great to hear!

The side effects that you mention are very common and there are a ton of posts here on the site about them from the members. Can't help you with personal experiences as my dad never had chemo or that. Very glad to hear that his weight has generally been maintained and eating smaller amounts more often will certainly help with that. There are also many many drinks and supplements out there that can help with this too should he wish to try them. My dad used to drink the ensure drinks and they helped a lot.

Great results from his last scan and when is he due to have his next one? We love hearing clear and no signs of cancer! If we can help in any way then please just ask and we'll do our best. And keep coming back here and let us know how everything goes for you both. We are here for you and we care.

My best wishes to you and DJ,

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: First time posting

Wow, 4 posts in less than 24 hours. This forum is wonderful. Thanks for the encouragement and suggestions. I am definitely going to get some protein powder and add it to DJ's drinks. I've been trying to juice carrots, ginger, bananas or whatever is in the frig. Thanks again.   Jane

Re: First time posting

If you have a GNC close by they have a really good selection of whey protein powders....with lots of different flavors. My husband really didn't like the powders but we got him cookies and cream flavor and then unflavored which went into a lot of other things. But there are lots of flavors so maybe you can try a couple different ones.
Hope that helps.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: First time posting

Hi Jane,

Here's a link that should be of use to you re powders and building up etc.

http://www.macmillan.org.uk/Cancerinfor … otein.aspx

Best wishes,

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.

8 (edited by Mvg Wed, 18 Sep 2013 06:53:20)

Re: First time posting

I'm sorry. I tried to introduce my Dad as a new member here and Posted in the wrong place. As I did not yet read the initial Post, I wish them the best and will read it in detail later. I cannot read it now because I'm with my dad who is on his way to get treatment as we speak.

9 (edited by Lainy Wed, 18 Sep 2013 06:57:22)

Re: First time posting

Dear MVG welcome to the best little club in the world that no one wishes to join. I am sorry to read about your Dad but you did the best thing you could do by getting a second opinion. Wishing your Dad the best today on his treatment and looking forward to hearing more about his Journey.

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.

10 (edited by Mvg Wed, 18 Sep 2013 13:52:09)

Re: First time posting

Thank u Lainy.  I deleted my initial response that appeared here because it introduced my Dad as a new member and is in the wrong place...I apologize to Jane, the original poster. Jane, though I am introducing my Dad as a member today when My stupid self finds the right place to post it, I have been following this site closely since My Dad's ICC diagnosis 9 months ago. And though I too am so sorry you find yourself here, I KNOW you are in the best, only place for knowledge, inspiration, support, hope, etc. I'm happy your husband is doing well and hope and pray he goes on to get stronger and better.

Re: First time posting

Jane,

You might look into a protein powder we were recommended by Duke.  It's on a site called www.unjury.com

I used this when I had my lapband surgery and it's amazing.  It's medical grade, comes in numerous flavors and disolves great!  One scoop had 20 grams of protein and I would mix it with the Carnation instant breakfasts. 

My favorite flavors were Chocolate supreme and vanilla.

They have a wonderful website with lots of information and recipes. 

Give it a look.  My Mom loved the smoothies I made with this and the instant breakfast.

Hugs!
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.