Topic: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi all you experts. I posted a question about Y90 in the general discussion section. I have heard back from one person and am grateful for that. I was wondering if Percy, Marion, Gavin , and Eli would voice your opinions on the matter because you are all very knowledgeable. I was afraid my question might have gotten lost in the shuffle. I have looked at past posts about Y90, but none of them really answered my questions. Lainy, I know Teddy didn't have this procedure and you are more of an expert on CyberKnife, but I thought you might be able to help as well, if not at least calm my nerves on the whole thing. You are so good at that. Thanks to all of you. I don't know what I would do without you!

Love, -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.

2 (edited by eli Wed, 21 Mar 2012 13:29:04)

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi Pamela,

I'm afraid I don't know much about this treatment option. As far as I know, it's only used to treat tumors inside liver (intrahepatic CC). My wife's tumor was in the bile duct outside her liver, so I never took time to study Y90.

The little I know I learned by reading this forum. Theraspheres are small radioactive balls. They deliver radiation dose directly to the tumor. A doctor inserts them in the blood arteries very close to the tumor.

I heard they are quite effective in hepatocellular carcinoma, the "other" major liver cancer. I also heard they are still kind of new and experimental when it comes to CC. To the point that some insurance companies deny coverage. If I recall correctly, Byron had hard time getting them approved.

I'm at work right now so have to be short. I will do more research once I'm home. If I find something of interest, I will be sure to post it here.

Sorry I can't be of more help.

Best wishes,
Eli

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Pam...Percy is out of town for the moment and I am heading to the plane for my trip to Florida.  (Society of Surgical Oncology.)   Please, know that I will respond to your question as soon as possible.
Hugs,
Marion

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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi Pam,

I so wish that I could help you more with this, but like Eli I don't know too much about Y90 either. And I can't help with personal experience either as my dads treatment was PDT. I did a quick look around on google and found info on this with regards to HCC but couldn't see anything for Y90 and CC. I will do some more research on this and if I find anything that I think will be useful for you and Lauren then I will of course post it here. My apologies to you that I can't be of greater help right now.

Hugs to you and Lauren,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi Pam, I am afraid the only thing I can tell you is there is a CC Patient on here who goes by the name of LUD and he is going through Y90 in Paris now. I would pull up his posts and see what he says.
What can one mother day to another when it comes to a child? Take some deep breaths, go for a ride alone and scream in the car or sing as loud as you can, it relieves stress. I can't suggest to love Lauren more as you already love her with your whole life's being. Guess the best thing is to say I am here and feel your pain.
You never know how strong you are until "strong" is the only choice you have!

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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi, Pam
Radioembolization is another name for Y 90,please read under the experience forum under"Radiation treatment and options".
The first four discussions are all about Y 90.
I am sorry I cannot be at your service at this moment due to personal emergency situation..
Please read those entries and you will get a pretty good picture about the Y90.
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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Pamela,
I just started the radioembolization procedure
I had the mapping process done yesterday.  And will move to the actual procedure  in two weeks.

But feel free to ask me any questions?
Percy is also a tremendous resourc and I am sure will be helpful when he is back on-line

Ed

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Pamela,

Here are the four discussions from the Radiation section that Percy mentioned.

Complete Guidelines for Radioembolization
http://www.cholangiocarcinoma.org/punbb … hp?id=7792

Radioembo Info. From Dr. Raid Salem and Sze (Famed Radiologist)
http://www.cholangiocarcinoma.org/punbb … hp?id=7791

Evidence-Based Answers to Frequently Asked Radioembolization Questions
http://www.cholangiocarcinoma.org/punbb … hp?id=7795

Another Article for Radioembolization
http://www.cholangiocarcinoma.org/punbb … hp?id=7794

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Pamela,

A couple of other links that may be of use to you -

http://www.ncbi.nlm.nih.gov/pubmed/18759346

http://www.ncbi.nlm.nih.gov/pubmed/21431970

http://www.canliv.org/downloads/images/ … patic.aspx

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi again Pamela,

Percy posted this link in the Radiation section:

Advances in yttrium-90 radioembolization for liver cancer
http://www.news-medical.net/news/201110 … ancer.aspx

One quote may be of interest to you:

"Radioembolization with resin microspheres is a safe treatment for patients with unresectable, or inoperable, hepatic malignancies," concluded Daniel B. Brown, M.D., FSIR, an interventional radiologist and chief of interventional radiology and interventional oncology at Thomas Jefferson University Hospital in Philadelphia, Pa. "More than 90 percent of the individuals in our study who received infusions showed no, or few, changes in liver function. And, generally speaking, almost all patients receiving Y-90 infusions to treat primary or metastatic liver tumors were asymptomatic after treatment," he added.

This treatment seems to be well tolerated.

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

I can't even begin to tell you how special all of you are. I broke down and cried for a bit because even though you are all so busy, you find time to help me out. Wow! I will check out everything you wrote to me. Thank you so much. Percy, I hope everything is ok. I would never have bothered you, had I known.  Marion, have a safe trip and thank you for your tireless support.  Eli, Gavin, and Ed, thanks so much for your eagerness to help me understand about this procedure. And my dear, sweet, Lainy, you always know just the right thing to say to ease my worry. I love you all. You are the best.

-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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi Pam,

My husband John was being considered for the Y90 theraspheres but once he had the trial run or mapping as Ed said, it showed that there was too much leakage into his stomach cavity.  He had the chemoembolization four weeks ago and we go tomorrow for an MRI and to see the doctor to find out if it worked.  Back to the Y90--everything we read and talked about with the doctors made us think that this would be a great procedure if he could have it done.  They shoot radiation beads directly into the tumors with hopes of eliminating them.  They do the trial run first without the radiation to place markers so they will know exactly where they want the beads to go.  Also, this allows them to see if there is leakage to other organs, because they don't want these beads to go there.   John asked them if the procedure could be repeated and they said that it could.   I think the side effects are supposed to be very minimal, if any.  I know Fatemah's mom had the  Y90 done in February so you might contact her to find out more.  I'm so glad that Lauren is doing so well with her treatments and that there are still more options for her to consider.  She is so lucky to have you fighting this battle with her.  Love,  PeggyP

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Pamela,
Peggy's experience was similar to mine. The overall goal of the  procedure is to get as many radioactive beads as they can to the tumors.  The first thing they do is a trial run or mapping looking to find and block any arteries that may take  the beads to other organs like the stomach.  The can do this using coils.
Secondly the need to check the lung / liver ratio on how they share blood.  If the sharing percentage has too much going to the lung then they can not do the procedure.  So far I am a go for April 3rd

Please ask any questions you want.  I might be a help just because I have a few things in common with Lauren.  I am young ish (not Lauren young).  I have small tumors on one side of the liver and a big one on the left.  I just finished eight months of a clinical trial. And once I finish this procedure i am on the hut for the next one

God bless
Ed

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Thanks for the info Peggy.  Your husband had chemoembolization instead? Is that where they shoot chemo directly into the tumor? I hope his MRI shows that it worked for him. I will talk to Fatemah. Thank you for caring. I promised Lauren when she was diagnosed with CC that I would always be right at her side through this whole ordeal and I meant it. I will never give up hope for her or anyone else suffering with CC. One day we will conquer the beast. Take care.

Love, -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.

15 (edited by Pamela Wed, 21 Mar 2012 21:35:09)

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi Ed,

Wow. You do sound similar to Lauren. Are they trying to kill all the tumors on the right side, the big one or both? With Lauren, they want to get the small ones on the left. I guess they figure they would never be able to kill the big one because it is so big, but like 4cm. smaller than it started out before chemo. What was the clinical trial you just finished? Do the doctors think you could be a candidate for surgery? I am still in shock that Lauren's surgeon is considering surgery, when I think he was pretty hopeless at first. Lauren has always had a 6th sense about things. She thought she had cancer before she was diagnosed or had any scans or anything. She also speaks about her future and is sure she will live for a long time even after being told by her oncologist that she will not live past 5 years. So we will see what happens and never give up hope. I hope you can do the same and I hope you live each day to the fullest like she does. I wish you the best, best, best with your procedure. Lauren has consultations with a radiologist and radiologist/oncologist in early April, so she will probably be right behind you. Thanks for all the info.

-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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Pamela,
I am finishing an 8 month trial of panitumimab / oxaliplatin / gemcitabine
We had good results early
My large tumor went from over 8 cm to 4.0 cm
And we lost 75% of the small ones
But the last few scans have been mostly stable. So we are moving to radioembolization
I still have not been able to get a surgeon to bite on surgery...maybe Lauren's doc could take. Look at my stuff.

For now they seem to be going after all the tumors...but my oncologist did mention the idea of emboli zing one side and operating on the other...

I am having a petscan today I will let u know how it goes

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Dear Ed,

Good luck on your Pet scan.I think you have made great progress with the shrinkage. Lauren's big tumor started out a whopping 17x14 (cantelope) and is now 12.9x11.1. She has 3 tumors on the other side. They used to say 5, so maybe some of them are gone. The largest is .9x1.2.  Lauren's liver surgeon is Dr. Christopher Sonnenday. He at University of Michigan Hospitals. He does resections, transplants, and leaky bile duct repair. I'm sure he does other surgeries as well that have to do with the liver. His office # is (734) 936-5816. We absolutely think he is brilliant. My oldest daughter is an anesthesia resident at the hospital and has been in the OR with him to see first hand the miracles he performs. I think he is her favorite surgeon. Maybe he would take a look at your records. It can't hurt to ask. I don't know his e-mail but I will get it for you if you want. I never try to push people into seeing a certain doctor because I absolutely can't stand it when others do it to me. So take this as useless info or help. It is your call and yours alone. I am hoping for only good things to come your way. Hope to talk to you again.

-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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi Pam,

Just saw this tonight and thought that it would be of interest to you.

http://www.miamiherald.com/2012/03/23/2 … ation.html

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

My husband had radioembolization 3 weeks ago at the Mayo in Jacksonville, Fl.  He will have an MRI in 3 weeks.  I will post his results when we receive them. 

We are told he has stage 4 ICC with portal vein involvement.  He has one small tumor near the border of the left and right lobe.  He had chemoembolization to attack that tumor a month before the radioembolization.  The radioembolization was to attack the large tumor that is about 8cm.  He had chemo therapy, but there was no tumor shrinkage.  The cisplatin has also reduced his kidney funtions.  We were told this is all palitive care.  He was really sick the week after the procedure.  He is doing a lot better now.

I am hoping that everyone that has had this procedure will post results. It would also be interesting to hear if anyone has had this procedure done twice.

20 (edited by Pamela Sun, 25 Mar 2012 12:42:07)

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi Janet,

Thanks for letting me know about your husband. I sure hope the radioembolization works. I am sorry he didn't feel well after. I have read about many people that have had the procedure. It is just like with chemo. Some people get so sick and others like my Lauren have a fairly easy time. Believe me, it is no picnic after, but she is not vomiting. I am hoping she will have an easy time with the Y90. You just never know. Cisplatin is a rough one for sure. Lauren was on Gemzar, Cisplatin, and 5FU for 12 treatments of chemo. Her doctor took her off the Cisplatin at least for now to give her a break. She is still on the other two. The Cisplatin really messed with her platelets and made them go low. But chemo really did help shrink her tumors. She feels so much better being on Gemzar and 5FU without the Cisplatin. But, I am afraid it won't be as effective. I wish you and your husband all the best. Please keep me posted. I am anxious to hear great news about your husband.

-Pam

Gavin,

Thanks so much for the article. It was very informative and positive! Thanks for taking the time to share it with me and others.

-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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Pamela,

I just wanted to let you know i completed the radioembolization yesterday.  All seemed to go to plan.  So now we wait for results.  I am not used to waiting, having been on a cycle of treatment and recovery for then last nine months.  But I will keep you up to date as my follow ups occur as I know Lauren hopes to follow the same path.

Also I have been in contact with Dr Sonnenday.  He has all my scans and information and it seems like I might fit his criteria for surgery.  I am very nervous though as it seems like this is just such new territory.  But nothing ventured, nothing gained I guess.

And thank you to everyone on this board .  I have an unbievable family and support group (especially my caregiver and wife) but everyone here has provided support and information at this the hardest of times.
I will keep you all up to date

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Hi.
I admire your courage as well as the desire and determination to put yourself up on the table for experiments in search of a cure or treatments to prolong the life of the CCA patients and share your result with us. Thanks.
BTW,did you chose the radioembo for the large tumor or for the little ones for the future possibility of surgery? My guess is the later.
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: Percy, Marion, Gavin, Lainy, Eli can you comment?

Percy,
Thanks for all your help.  You are truly an angel in disguise.

I was lucky enough to get my oncologist, radiologist and Dr Sonnenday on the phone on a conference call literally a few minutes before the procedure.  We were able to agree that I could proceed with a radioembolization of both sides and still be eligible for surgery.  So I continue to try and find a path out of this forest...but feel lucky that I was able to get the full embolization ..and will need to decide on surgery in the coming weeks

God bless
Ed

Re: Percy, Marion, Gavin, Lainy, Eli can you comment?

Santdad...I can only echo Percy's comment.  I wish for good things to continue.  Thank you for keeping us abreast.
Hugs,
Marion

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: Percy, Marion, Gavin, Lainy, Eli can you comment?

WOW, Ed, it is very exciting to see you chart new courses, wishing you all the best and yes, you are one courageous Hero!

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.