Considering seeking a third opinion

Darla, no need for thanks, we are here so that you can rant all you want! I agree with Pam that you should call Dr. Chapman's office as that is not like him to not answer. Also Dr. Kato at Sloan Kettering is known to take 'difficult' cases. Wishing you the best and stay strong!

Hi Darla,

I agree with the other respondents- you need to strongly advoctate for yourself with this type of cancer. Doctors expect patients to call and you may as well find out the time frame they have in mind to review your case, so that you can pursue other options if it is too lengthy of a wait. I like the idea of contacting the Dr. at Sloan Kettering. With my Dad I contacted a well known Canadian Oncologist, Dr. Robert Buckman (who has unfortunately passed away) and I did so through his contact email on his hospital website. It was enough for him to eventually get in touch with me and discuss my Dad's treatment and do the same with my Dad's Oncologist. So, if you have some names and their contact emails, it wouldn't hurt to get the word out through the web- that way you may've increased your medical support team with the click of just a few buttons.

You're in my thoughts and prayers, God Bless.
Missing U

Pam,
You are such a sweet and thoughtful person.  I appreciate all your advice.  I know that we need to act quickly and that was why I was getting nervous.  I am so happy though, that I will be seeing a Specialist soon in Missouri.  I dion't even know if this is my answer to prayer or not, but at least somehting more is happening!!

How is Lauren doing? I sure hope she is feeling well, and enjoying her life too.  Lately I have been in a depression state and just feel like I drag myself to work, and home and I have no motivation to do anything.  I see my Oncologist on Friday for chemo, I may ask her if she has somthing that will help me with pain and sleeping so I can sleep better at night.  My mind races every night and I go over everything in my mind over and over. 

God Bless you and Lauren,
thank you for everything,
Darla

Lainy,
You are right and I am feeling so much more strength and power right now.  Thank you for the encouragement, it really helps with life looks bleak.  Never thought I would be in this predicament, but I am going to fight with all I've got!!!

Maybe I will even contact Dr. Kato.  The sun is starting to shine and I have you wonderful people here to thank for that!!!

Darla

Lainy,

Well Ijust got the call I was fearing. Barnes Hospital said that I do not qualify for liver transplant.  I am going to try to find another cancer center that will at least consider me.  She siad that because I have a tumor that is technically not in the liver ( the largest tumor on othe main bile duct)  so that is another reason why I don't qualify there. I also am only able to have one tumor and they said I can't have transplantation after chemo.

Wow, I went from a very excited lady to very depressed and scared again so quickly.  I know that God has a plan for me I just wish I knew what it was.

Any advice  now would be greatly appreciated.  This roller coaster ride is frustrating.

Thanks again,
Darla

Hi Darla,

It does look like things are starting to look up for you. I really hope you find someone that will think surgery or transplant is possible. Did you ever see Dr. Sonnenday at U of M? He is a liver surgeon that saw Lauren first. If there is any way he thought surgery was possible, he would go to bat for you. He does lots of surgeries and liver transplants. Dr. Zalupski tends to be a bit more conservative.

Thank you for asking about Lauren. She is only on Xeloda right now since she had her allergic reaction to Oxaliplatin. The Xeloda is really zapping all of her strength. She has been so tired and falls asleep sitting up on the couch every day. She hasn't felt like doing much at all. She has a CT scan next Tues. and we will see Dr. Z on Wed. and decide what to do next. I am praying for a miracle, but kind of scared for what might show up. Stress from scans is the absolute worst.

Do you not take any pain meds at all? Wow, that is great if you don't need them. But if you have any bit of pain that bothers you, you should have something. Lauren uses a long and short acting morphine. Lauren also takes ativan at night and it helps her relax so she can sleep. My doctor also gave me ativan to use if I am really stressed. I have only taken it once, but I slept really well. I am also on an antidepressant which has helped a lot. I think it is great that you are working. You can get on disability with CC if you find it too difficult to work. I sure wish you all the best. Please keep us updated.

Love and hugs, -Pam

I just saw your new post after I posted this, so I am now editing. I am really sorry about the call from Barnes. I understand that you want surgery, but at this time it might not be the best thing. I know it is hard to accept, but you don't want someone operating if it is not in your best interest. Chemo can shrink things down and allow surgery at a later date. Keep your chin up, Darla. I know it is so difficult.

Dear Lainy and Pam,

I so appreciate both of you, you are right about me not knowing what is best and feel God is opening and closing doors right now for a reason.

I am anxious to contact Dr. Kato and my husband wants me to call md  Anderson Also and look at all of our options. I am going to call them both tomorrow.  If the door to these next options opens I will know it was mean to to be. I do trust my oncologist and she is doing the right things at this time.

Once again thank you for your uplifting words, you are both a blessing to me!!
Thanks and God Bless.

Darla

See, you got your spirit back! Good luck with your endeavors with Dr. Kato and Dr. Javle!!

Darla....sorry for not joining in sooner, but I am in New York in conferences with Faster Cures and have little time to get to the board. 
I just want to encourage you to consult with specialists, as they differ in their opinions in regards to treatment.  Keep up your boxing gloves.
Hugs,
Marion

Cathy,

Thankyou so much for your words of encouragement.  I do not have anything against Dr. Chapman or the Barnes Hospital. Unfortunately I just don't meet their criteria for transplant.  I plan to keep searching though, I am certain that there is a specialist that will be able to help me. 

I am just used to seeing my Dr. or oncologist and not having to seek other opinions.  The list of Specialists is vast and very scarey to me because it is reaching out into the "unknown".  I like what Marion said about putting on the boxing gloves, I feel that she is completely right and this is a big fight and I am ready to get in the ring!!!

I will let you know how the conversation goes with Dr. Kato and Dr. Javie also

Thanks again !!!

Darla

Pam,

I do agree with you about surgery right now not being the best option.  I just want to find a Dr. that can say, yes Darla there are other options and I am willing to help direct your care.  I know that Dr. Zalupski is on board with my Oncologist right now, and that is very encouraging. 

I am just hoping that if I find another Dr. who will say lets discuss other options that may be available.  I am also praying for Lauren and for her cancer to continue to shrink so she can be considered for re-section or possibly transplant. She is so young and beautiful!!!

I will keep you posted on what I find out.  I am also concerned about expenses of travelling, I am not sure how we are going to be able to afford it.

Thanks  for everything,

Darla