Considering seeking a third opinion
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- This topic has 23 replies, 8 voices, and was last updated 11 years, 12 months ago by lainy.
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November 29, 2012 at 8:41 pm #67015lainySpectator
Darla, you will find a way to get it all done. You can have a consult via email or phone to start with. I just want to mention to make sure those boxing gloves are pink, with rhinestones and lace ties!
November 29, 2012 at 7:42 pm #67014sdcarlson89MemberPam,
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
November 29, 2012 at 7:37 pm #67013sdcarlson89MemberMarion,
My boxing gloves are on, I have God in my corner along with my whole family, and I am ready to fight this fight!!!
Thanks so much for your words of encouragement!!!
Darla
November 29, 2012 at 7:35 pm #67012sdcarlson89MemberCathy,
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
November 29, 2012 at 3:57 am #67011jathy1125SpectatorDarla-I am so sorry about your news from Barnes, as you know Dr. Chapman is my hero, it breaks my heart that he can’t help you. I believe he is as good as it gets, but I also know that our cancer is rare and new options are happenning more often, I think Dr. Kato is another brain to be picked!!!
Lots of prayers and mracles-CathyNovember 29, 2012 at 1:57 am #67010marionsModeratorDarla….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,
MarionNovember 29, 2012 at 1:56 am #67009marionsModeratorDarla….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,
MarionNovember 29, 2012 at 1:56 am #67008pamelaSpectatorSee, you got your spirit back! Good luck with your endeavors with Dr. Kato and Dr. Javle!!
November 29, 2012 at 1:24 am #67007lainySpectatorDarla, if you call MDA it would be best to ask for the office of Dr. Javle.
November 29, 2012 at 1:18 am #67006sdcarlson89MemberDear 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
November 28, 2012 at 11:54 pm #67005lainySpectatorDarla, I am sorry but not that sorry. You see, I believe everything happens for a reason and I see Percy also recommends that you call Dr. Kato. I think he is pretty aggressive, Dr. Kato, not Percy! Yes, it was a down news day, but then look at the upside…maybe it was meant for you to call Dr. Kato. And if he says no surgery…he may have a new/good idea for treatment of another kind. Best of luck on this and be strong!
November 28, 2012 at 11:36 pm #67004pamelaSpectatorHi 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.
November 28, 2012 at 11:34 pm #67003pcl1029MemberHi,
sorry to hear about your situation.
Call Dr. Kato tomorrow at New York Pres. Hospital and get his consult. He is one of a kind surgeon who have the will and skill to try new things and he is a world renowned liver surgeon.
God bless.November 28, 2012 at 11:14 pm #67002sdcarlson89MemberLainy,
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,
DarlaNovember 28, 2012 at 9:00 pm #67001lainySpectatorDarla, we did not do it, you did because you wanted to! We can talk until we are blue in the face but if someone really wants to change their attitude only they can do it. That is why I always feel so many of you are much stronger than you give yourselves credit for. And may I say what a beautiful lady your are, glad you posted your pretty face~!
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