Let battle commence again … Sensitive reading ….
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Oh, Sandie, I thought I was so strong but this is tearing me up. How I wish there was something I could do for you and your son. What a wonderful man he must be. Sending you my best in Prayers and thoughts and love. I can’t even began to imagine. The World can be a good place but CC is the cruelest Cancer I know.
I asked for strength.
God gave me difficulties to make me strong.
I asked for wisdom.
God gave me problems to solve.
I asked for prosperity.
God gave me brawn and brain to work.
I asked for courage.
God gave me dangers to overcome.
I asked for patience.
God placed me in situations where I was forced to wait.
I asked for love.
God gave me troubled people to help.
I asked for favors.
God gave me opportunities.
I received nothing I wanted.
I received everything I needed. By Aaron HoopesThank you so much for your love, support and advice … I have today told my one and only child at the age of 22. How cruel this world is. He is devastated, he lost his father to cancer. I have found a support group that I hope will be able to guide him through his journey. He is so strong and so loved and so lovable. My prayers and strength are for him. Oh cruel world, at best please give me the strength to see him graduate from university and begin to fulfil his dreams. Each day I am positive and laugh, my exterior is tough but those wretched tigers come at night. x
Hi Sandie,
I just want to send you some strength and support. I am sorry it has recurred but use us here to help you through this next stage.
X
Sandie,
Here is a good blog about guilt and cancer. It articulates so many of the feelings I’ve had through my journey with cancer. Guilt about putting my family through things, guilt about feeling bad and bringing others down, guilty about being the center of attention in such a negative way, and most prevalent for me, guilt for having survived when so many others do not.
http://well.blogs.nytimes.com/2012/06/14/life-interrupted-feeling-guilty-about-cancer/
It’s a short read.
Hugs,
-Randi-Sandie….wanted to mention the webconference by our Dr. Giles titled:
“Feeling Guilty for Having Cancer.”
http://www.cholangiocarcinoma.org/media.htm
It has been viewed many times and touches on the many aspects of the guilt accompanying a cancer diagnoses. If you are up to it please, take a look.
Hugs,
MarionHi, Renee,
Please take a look of the message above ; I just add a 2nd oncology consult suggestion to the message that I have answered you at 12:1700 yesterday about gene sequencing.
God bless.Sandie….already you know that a tidal wave of support and love is heading your way. Stay strong, dear Sandie, recurrences happen frequently. Numerous people have been able to remedy this; absolutely no reason to believe that you won’t be able to do the same.
Hugs and hugs,
MarionSandie, First I am so sorry for your setback in this battle. We live with this over our heads and we live our lives as purely as possible. There is no reason to apologize for your diagnosis, ever. How everyone deals with your condition is very complex, and most all the population has no idea what the inside of your shoes feel like. It’s like a nuclear war is going on but nobody but you is affected. Keeping your cool is tough and only a select few understand your distress. This site has people who are familiar with this and we share your triumphs and setbacks. Don’t ever worry about sharing what makes us all cry as we will cry and hurt with you. Hopefully knowing that makes you feel a little better. Please keep the strength you have shown til now and know I am hurting with you, Pat
I used to apologize to the boyfriend I had when I was diagnosed, too. I used to say I knew he didn’t sign up for this. It’s a tough thing to think about. But those that count will stick around (he didn’t, so he doesn’t count in my world anymore). And they won’t want our apologies.
We are all here for you. Please let us know what your next course of action is.Hi, Renee,
The following is the exact quoted from the consult from MD Anderson:
…To make some suggestions, if not done I would recommend genetic sequencing for additional genes …..
I also got another oncology consult from university of Chicago,,the direct quote
is as follow:
—I would also send the tumor tissue away for full sequencing if it has not already been done, just to see if there are any hints as to how to best treat your tumor….What i think is that they try to leave no stones unturned for future treatments since targeted agents are famous for developing resistance early.
I am EGFR positive, so they recommend Tarceva for me if all the tumor were removed completely by RFA and PEI.
BTW, if TIL from NIH is not for you, you may consider clinical trial of PD-1 and the like (PDL-1).(immunotherapy agents).
God bless.
Sandy, I am not sure what to say except to compare your situation to Teddy’s. He used to apologize to me all the time for what he was putting me through! I would say, me??? You are the one going through everything, NOT me! My little tough love there, real tough, yes? He had 2 rules one was no tears in front of him and the other was always to have humor. He never wanted to waste a second on ‘krap’. I have to share something private and it will now go around the world but if it makes you smile I won’t care who reads it. Typical Teddy and how he would crack me up. Oh, we had our spats just like all other couples. I would go to bed to be alone and he would come prancing, yes prancing in to the bedroom. He went up to our gorgeous wedding picture and look at us and say, “Has anyone seen my wife, I can’t find my beautiful wife!”
OMG I would crack up and laugh forever. Couldn’t stay mad with him around. What I am trying to say is even with what you are going through try to have some humor, it’s good for the body and the soul. I think once you get your referral you will again feel better.My tears fall when I am alone …. not for me, for those who love me, I so don’t want to cause any heartache and pain but no not how to avoid this. I will keep you posted but it may be a while as I await my transferral. Thank you so much my dearest friends xxx
Sandie, best wishes to you. Give it all the fight you have. And keep coming back to this site for as much encouragement as you can handle…there is plenty here to be had by helpful and loving people.
Take Care, Renée
Percy, did I read correctly that you had a “next-generation sequencing genomic profile”, did it make a difference in treatment approach? Has anyone else had it done, and what was the outcome?
My Onc suggested something of the sort, then dropped it. I suppose he realized I would need another biopsy as there was not enough tissue remaining in my original sample of February 2012.
I am on track to begin a third line of treatment (FOLFIRI), but my platelets are too low at this time to start. I read about Melinda’s success with the NIH TIL study and presented it to my Onc, but he dismissed it out of hand without giving a good reason. I have a ‘little’ A-Fib, so that may disqualify me from that trial anyway, according to the woman I spoke to at NIH.
Anyway, the above is why I am curious about the genomic profile and if it will be worth another biopsy. It seems my liver gets a bit annoyed with me when it gets stuck with needles (ie, biopsy, PVE, HACE) and likes to cause significant pain, nausea and vomiting for the following 12+ hours. I would like to avoid another biopsy if possible, but if it offers more or significant information, it would be worth it.
Thank you in advance to all, Renée
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