Topic: Where to go from here?

Hope everyone is having a Happy 4th or for our Canadian friends, hope you had a good one as well.  My mom has been posting for me in recent weeks as I have not been well enough.  She has been a big help through all this, a great caregiver. 

I have been out of the hospital for about a month now.  I was emitted for nausea/vomiting, lost 10 or 15 lbs.  Since then, I have had a g-tube inserted to help deal with nausea/vomiting of which has helped to steadily improve my appetite and nausea.  I am also on TPN, cycling 12 hrs at night. 

I met with Dr. Javle in Houston close to two months ago to discuss other treatment options.  I had been on Gem/Oxaliplatin with good success for 8 months and then suddenly my tumor markers started to increase again.  He suggested Gem and 5fu of which I have had 2 treatments thus far.  My CA 19-9 was drawn last week which increased from 21,000 to 71,000.  I am confused by the sudden increase.  My appetite has been steadily improving and I have been trying to stay active on days when I feel good.  Has anyone ever experienced such?  I know the rapid increase could be indicative of tumor growth.  My cancer is primarily located in the omentum/peritoneum area. 

I know they will want to change up chemos again, but I'm just so discouraged from this recent news. 

I am scheduled for scans next week. 

I am ineligible for any trials Mayo Jacksonville has because of my liver transplant and am not a candidate for radiation or surgery because of the location and sensitivity of the tumor, so that leaves systemic chemo, what a lot of us are going through. 

I get frustrated very easily, I am on the younger end of the spectrum, 25.  Others on this site can relate, especially I think Tiffany and Lauren.  In part I'm reaching out to you because of our youth.  There are days where I think I know how to approach this, positive attitude, try and maintain good outlook.  When I received the news yesterday, it devastated me.  New treatment plan was in place, feel good physically (on non chemo days).  Frustration then leads to worry which just makes me wanna cry and scream sometimes.  My head gets warped into inevitable questions.  Things I don't want to think about.  And patients say live each day as it is, a day, which is very hard to do. 

So that is my update.  Anyone with successful changes in chemo, after one stopped working, please feel free to share your experience with me.  It would mean a lot on this blessed 4th. 

Thank you kindly,

Trevor Bougill

Re: Where to go from here?

Dear Trevor, when I read your post the Mother and Grandma in me just wanted to give you miracle hugs and make everything go away! I can't address changing chemo as my husband never had chemo but I can tell you that you saw one of the best, with Dr. Javle. I know you will be hearing from others on this, I just wanted to say Hi and please try to keep your spirits up as attitude does play an important part. Stress adds nothing good. I know it is hard but I think as you become more involed in our remarkable family you may find a ton of strength and attitude here. In the meantime sending tons of thoughts and prayers for your scans next week.

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: Where to go from here?

Trevor,

Please e-mail me your e-mail address. I will have Lauren write back to you. Do you have Facebook? We will both friend you. I am so sorry you are having such a hard time. Lauren cannot deal with this site. It makes her too upset. She is friends with a lot of people on here that are on Facebook. They really support us a lot. Mostly ladies, but you shouldn't mind that!! They are always there for us, unlike a lot of the regular people we know. Lauren had been doing well up until this last scan and then we got bad news that she had a new 4 cm. tumor in the side they just shot Therasphers into. She just had an MRI last night to see if they can tell if it is indeed a tumor or maybe something else. I can tell you Lauren feels exactly the way you do, so I think it would be good for you both to talk. I know Lauren appreciates me too, the way you appreciate your Mom. But, we do get mad and yell at each other from time to time. We are together so much. I am sure she would love a new friend. She is out right now, but I will tell her about you as soon as I see her. Take care, Trevor and I will pray for you. Try not to get down and discouraged. Ok, be that way for just a little bit and then get back up and start swinging those boxing gloves. You and Lauren have youth on your side. 

Love and hugs,

-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: Where to go from here?

Pam, I LOVE YOU! No one could have said it better.

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: Where to go from here?

Trevor, I like to think I have youth on my side at 48....hehehe.. I had a spike in my CA -19-9 after radiation. My doctor feels that the tumor markers are just one way of looking at the situation, he relies on scans more. Somedays are great and someways all I want to do is cry. I have a love hate relationship with my chemo pump, I love that he keeps the cancer at bay but hate being attached to it, I named it Wilson. I will add you to our daily prayer list, my faith in our Lord has gotten me this far. If I was there I'd give you a big hug, I have a 21 yr. old son and I really feel for you at such a young age. Stay strong, miracles happen!
I'm on Facebook too, Lisa Salem Craine
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

Re: Where to go from here?

Trevor,

Just wanted to chime in and say hello.  I often find I am at a loss for words when reading stories like yours.  I have heard wonderful things about Dr. Javle on this site, so you are in good hands.

I know it's hard to always be positive and upbeat when you are scared and angry.  Don't worry if you aren't always positive, it's just normal and human and you won't harm yourself. Someone gave me the advice that I should give myself an hour a day to feel sorry for myself, sad and angry if I needed to be. 

Hang in there Trevor, we are all pulling for you!!

-Randi-

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: Where to go from here?

Hi, Trevor,
please read my 2 emails in reply.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Where to go from here?

Trevor,

I am 57 and consider myself the youngest person on this site.  :0)
I understand the days when you just want to get mad and yell at something or someone. Let it out the best way you can, 'cause it just has to come out.
Then, take a deep breath and know that many many people here love you and share your pain and anguish.

I don't know Dr. Javle personally, but I have somewhat of a connection. My Onc used to work with him in Houston before moving up here to Salt Lake City. I hear nothing but good about him, but with this disease, no doctor is a total miracle worker.

Keep your chin held high, kiddo. We are pulling for you.  Yes, I had a great 4th of July. My wife and I rode with the Sheriff's posse in a parade yesterday, then enjoyed a picnic and played on the lake with friends. Hope you did something fun.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: Where to go from here?

Byron, I am so happy that you had a great 4th and hope it continues  for much, much more eons ! I totally can understand why you had to be "escorted" by the Sheriff's Posse!

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: Where to go from here?

"HECK" no, Lainy, I was the one doing the escorting. I look pretty darn cute in my class A uni too.  :0)

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: Where to go from here?

Thanks again for everyone's support.  I had scans conducted on Friday, things remain stable which seem to be a recurring pattern.  Yet my tumor markers continue to rise-to 70,000.  The CA-19-9.  I think a change in chemo is needed.  That is what worries me, I am currently on 5fu/Gem.  I dunno how to understand this.  My appetite is increasing again even with g-tube. 

Any of this good news??  Changing chemos again has me scared.  I hope its just minor addition and subtraction...

Keep the Faith.

Trevor

Re: Where to go from here?

Hi Trevor.  I'm 32 and was diagnosed 14 months ago.  I had a resection, chemo and radiation.  It is a very difficult process.  I went to a Cancer Survivors Young Adult support group, but honestly I can't say it helped me very much. I try to keep as busy as I can and count my blessings instead of dwelling on all the negative.  I'm not saying it's easy or that I'm even capable of doing this, but I try.
Let us know if they change your chemo.  I had Gemzar/Cisplatin.   I tolerated it pretty well except it destroyed my counts and I needed neupogen and eventually a blood transfusion.
Lots of prayers!

Susie

Re: Where to go from here?

Hi, Trevor,
good luck and you know where to find me.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Where to go from here?

Trevor, in case you didn't know, STABLE is one of our favorite words! People switch Chemos and most often I have seen good results from that on our CC site. Best of luck! Be 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.