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July 2, 2014 at 8:53 pm in reply to: My sister starting PDL1 immunotherapy trial at UCSF this week! #83254
I hope this is only a bump on the road and that Nicole will start showing progress with the new treatment.
My thoughts are with you and all your Family.
Jason, i absolutely agree on the cruelty and unfairness of the system. A patient must have go thru all the unsuccessful and debilitating treatments available, BUT STILL BE HEALTHY AND STRONG, to be accepted in any trial.
The other irony about clinical trials, as Don (Adjuster11) discussed on a previous post, is that most of the promising ones have age exclusions. Some over 70 and others over 60 yo.
How is that acceptable when all the studies shows that 2/3 rd of cc patients are over 65 yo. That means that 66% of us or loved ones are not eligible for the good trials.
Is that our fault? the system? or our government?
My thoughts and prayers are with your Mom and You.
If the ICU doctor is saying that she is doing good, take the good news and ignore the oncologist stupid opinion.
Please don’t give up hope.
I am so sorry to hear about your Aunt. There are no words or actions that can make us feel better in this situations.
Your posts always brought memories and tears to my eyes since my Mom passed almost 4 months ago at the same hospital where your Aunt Pam was hospitalized last month.
The pain is overwhelming but they say time will heal our wounds.
May your Aunt and my Mom, Our Angels, give us strength to make them proud.
As much as the Mayo Research Study does not effect me personally, every time I see a post about it my heart starts shaking.
My Mom’s name is Nasra ( not her legal name but the name we all called her by since I opened my eyes to this world), I have never expected to hear this name in the United States.
My Mom was one of the most beautiful, loving, caring person you could ever meet in your life.
All the staff at the hospital used to call her ” Pretty Woman”.
Nasra, Mama, I miss you so much
I am so sorry to hear about about your Aunt, it is heart breaking to be in your situation.I wish there was anything anyone can do to take your pain away.
My Mom was at lee memorial too, it hurts so much everytime i pass by this hospital. I try to avoid it as much as i can.
The book that Marion mentioned is a best seller. It was translated to over 36 languages.
The Author,David Servan Schreiber, had many years of research on cancer diets. You can watch some of his videos on Youtube. Check the one he did at UCSF.
Kris told you what I hesitated to tell you in my previous answer.
If I might add to Kris, following a healthy lifestyle is very important either you decide to do chemo or not.
Eating healthy and exercising are very important to keep your immune system active. Raw vegetables, fresh juices and fruits to replace sugars, stay away from fried foods, reduce red meat( you can substitute with beans and nuts).Try to go 100% organic and grass fed if you can, Food And Thoughts on the corner of US 41 and Golden Gate has only certified organic products and I will trust them in that with my life( I used to supply them with all their organic poultry few years ago)
I am not saying by any means that this replace the conventional treatments but for sure it will help you even to go thru Chemo.
As we all mentioned before, there is not enough data on what is the best way to go forward with this disease.
I am not a patient, so I cannot put myself in your shoes. However my Dear Rob, this is a cancer and not a flu and no doctor knows what might happen.
My family went thru a lot in the last couple of years and I still can’t sleep most nights asking myself : WHAT IF?
Again, This is a very personal. Family support is very important in any decision you are going to make, they too have the same concerns that you have.Please don’t hesitate in discussing your feelings with them over and over again.
Best of luck
You are a good family man and a great advocate for your wife.
I know how hard it is to wake up every morning (that is if we ever get to sleep) and have the strength to put a foot in front of the other without giving up.
I hope Lynn’s new treatment will MELT DOWN all her cancer so you can both go back to your normal life as soon as possible.
Congratulations on your resection and I hope you have a speedy recovery.
As Lainy and Marion mentioned, chemo is a very personal choice in your case.
The truth is that there is not enough studies to prove what is the best way to proceed.
However even after a successful resection, a patient might have some microscopic cancer cells that cannot be seen while having surgery on on any scan.
From what I have seen, most patients tend to go for chemo and radiation to try to eliminate any possibility of reoccurrence.
That decision is also based on age, general health and many other factors.
I live in Cape Coral, 45 minutes away from you.
If you would have any questions or need ANYTHING at all ( I MEAN ANYTHING), please do not hesitate to contact me.
My email is : email@example.com
My wounds are still fresh and it is very hard for me to find the right words to say in this situation. I hope that every prayer that is being said in the world will be granted in a miracle for your brother.
I think i will be faster than Lainy this time in saying YIPPPiii, great news.
By the way, you have been slacking lately on updating your blog… I am a big FAN
My dear kris, I hope is Mark is feeling better by the day.
You are a wonderful woman and have one of the best caregiver attitude I have heard of. I know how hard it is to be able to wake up everyday and be able to take care of a family and at the same time deal with fear of what the day will bring.
I am so scared of the future. I have been scared, like Lou, that a time will come and I wont remember my Mom anymore.
We left this morning my parents house ( I took My Dad with me) trying to do some productive work and keep myself from thinking. I have neglected my business for almost 2 years since my brother in law got sick. That took a big toll on the business and now it is barely hanging there.
Do you believe me if I tell you that I couldn’t keep myself from thinking of my Mom for 5 minutes in a row.
You lost your dad knowing that you were not able to do anything to save his life. I am struggling the other way around, I don’t know if my Mother died because I couldn’t help her or because the doctor did not want to put the effort since she had a terminal cancer.
My Mother had a UTI that turned to sepsis even though I was telling the nurse at the oncology center, where we went to get her blood tests and fluids every other day, that her WBC count is too high . So she would go make a phone call and come back saying that the doctor said it was fine.
Can someone tell me for God’s , HOW a 14 to 17 WBC FOR FEW DAYS AFTER CHEMO is considered to BE FINe by ANY DOCTOR?
I am very UPSET and fell like I BETRAYED MY MOTHER.
Thank you my dears.
Dear Darla, I truly understand your pain.There is a reason for my user name and the title of this post: “SEEK” and “Angels”
Our small family nightmares started at the end of 2012 .My brother in law(our oldest and only sister’s husband) was diagnosed with reoccurrence of his cancer, he passed on April 23rd of 2013.
That was the first time I had to deal with death within the family.
It hit me so bad, I was very close to him, he was a brother, a mentor. He taught me everything I know since I came to the US 14 years ago at the age of 26.
When I read you posts, Marion’s posts or any other lady that lost a husband, it brings all the memories back.
My lovely Julie,
In my first post, I started by calling all of you on this board as HUMANS
Cancer is a beast, it comes from nowhere and like a tornado, it wipes everything’s in its path. It effects all our lives,patient and family members. It strips us from our ego, it takes our dreams away ,We feel naked and vulnerable, weak and helpless. We pray for a miracle, we get closer to each others, we go back to God even if we forgot about Him when our lives seemed perfect.
I feel your worries and your emotions, but please try to always be positive and think of all the positives. I am going to tell you something that might sounds harsh and selfish( can’t hold my tears as I type this) ,and please understand that it kills me everyday to think that way. I used to be envious when i read about someone getting better or a success story in the good news section. I would ask myself why not my mom.
Please be strong and take all the negative thoughts off your mind, not just for Julie, but also for your only Son and grandson.
I used to tell my wife that we can always have a different girlfriend,boyfriend,wife or a husband but you can never replace our moms and dads.
Julie, you are one of the very little blessed ones with this cancer, keep rising and shining, I won’t say fighting or winning because that is not a fight, and I refuse to say that our loved ones who passed from cancer have lost their battles.
Gavin, you are beyond compassionate. You invest a lot of your time researching and and posting studies to help others. All my respect to you and everyone else that is doing the same, it takes a lot from someone who lost a loved one to do what you guys are doing to help others.Most of us cannot deal with it and I can totally understand them.
Just so you know, I have been staying with my dad for almost the last 8 months (since my Mom got sick). It has been so hard on him to be without his wife and best friend of almost 50years.
You remind a lot of myself and of my life back in Lebanon. Ilias, Elias or Elie is one of the most popular name in Lebanon, in reference to Saint Elie.
It was always hard for me to read your posts, I feel very connected to you.
We are close in age, I just turned 41( worst birthday ever), my Mom wasn’t fluent in English but she was very independent and had a job till she retired last June, ironically. Our Mothers were about the same age.A dear friend told me that I should be grateful that my Mom did not pass all the sudden from a car accident and that I should cherish the time that I had to spend with her when she was sick and how much love was put in it. We left our jobs( me and my sister)to be with her 24 hours a day since she was admitted on the 12th of October 2013 due to a severe DVT in her leg . My brother who is the middle child came to visit her on the day she did her first chemo on January 7th 2014, he lives in France. I will never forget that first day of chemo, she was in the hospital, my brother came straight from the airport to the hospital at 9:30 pm. She was so worried about him seeing her , she started asking again and again few days earlier about when and what time he was coming and had an anxiety about it for several days before.
I am trying my best to try to remember the good days but I am not able to escape the bad one, either one hurts a lot.
God bless you, as my Mom use to say.
Matt, I agree with Cathy and Chuck.
The most important factor for cholangiocarcinoma patients to qualify for a liver transplant is: Not having mets to any other organs or lymph nodes.
In my modest opinion, other than major health issues, being NOT very healthy due to liver complications might give the patient a higher MELD score and get him a liver faster.
Going back to the main subject in this post, I agree with Wayne that most doctors do not explain to their patient all his treatment options . In case the doctor’s opinion is that no treatment will help, the patient is in title to understand WHY NOT ??? Just Simple life ethics.
That is assuming that the doctor knows what he is talking about, sadly this is not the case in 90% of the time with this cancer.
There are so many patients and families that are dealing with this cancer and are not fortunate enough to find a good doctor, go to a big cancer center or a major hospital. And no one hears about them. The blessed survivors on this board are the minority. Hoping that one day will bring cure to all