Topic: Questions about Y90, theraspheres or whatever you want to call them.

Hi Everyone,

I just would like to know if someone that has had Y90 or whatever you want to call it (I know it has a lot of different names) could tell me all about it. Lauren's oncologist called and talked to her today about it. I guess after her appt. last week he and her surgeon had a lenthy chat. Lauren's liver surgeon wants her to have it done to zap the small tumors in the left side of her liver to be able to get rid of the huge tumor in her right side. He is fairly confident that if the little ones are gone he can get the big one out. He does many, many resections and transplants so we trust him completely. He said her surgery would be huge, but he thinks he can do it. He wouldn't attempt it or even talk about it unless he was confident of a positive outcome. On one side I am so excited for Lauren, but on the other side it scares the beejeebers out of me, because of where the tumor sits, but I know it is her shot at survival. I would appreciate any comments on what it is exactly and what it was like to go through it such as side effects, etc. Thanks in advance.

- 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: Questions about Y90, theraspheres or whatever you want to call them.

Pam, dad is getting his second treatment today. He said yesterday he feels better than he has since he started cisplatin. He was extremely fatigued, especially for the first week. He could stay awake long enough to move to another room. He was thin to start with, and lost at least 18 lbs. I would encourage Lauren to try to put on a little weight before starting. Let me know whatever specific questions you habe and i will check back later.

Re: Questions about Y90, theraspheres or whatever you want to call them.

Hi Erin,

Thanks for answering. Do they do the procedure more than once?  I was under the impression it was only a one shot deal. Is the procedure painful?  As for putting on weight, that is not a problem. Lauren has gained like 40 lbs. since she started chemo. We think it is from the steroids. They cut her steroid in half and she is way better with her mood and appetite. She has always been a bigger girl and would love to lose some weight. She did lose around 40 lbs. before she was diagnosed with CC. Not a great way to lose it though. She is off her Cisplatin and feels so much better. She just gets Gemzar and 5FU. We are so hopeful this procedure will allow her to have a resection. I will pray for your Dad. Thanks again.

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.

Re: Questions about Y90, theraspheres or whatever you want to call them.

Pam-
I hope to have Y90 soon too!
I have a friend (Liza) who has liver cancer. She has had it 2 times. First time everything went good, second time she had lots of problems. She had bleeding that they had a hard time getting control of. Plus the second time didn't really help her. The first time did!

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Questions about Y90, theraspheres or whatever you want to call them.

Dad had a heavy dose on one lobe (the one with the large tumor). Today he had about half that on the other lobe. I just asked him and he said he felt nothing...no pain, no pressure, nothing. He is under conscious sedation and talks during it to the doctor.

His fatigue was the worst side effect. Honestly, we aren't quite sure beyond fatigue what was causing the other side effects (nausea a.d loss of appetite) because hewas dealing with kidney stones, too. The stones are gone so we will see how this time goes. I will update in a week.

Take care and lauren is in our prayers.

Re: Questions about Y90, theraspheres or whatever you want to call them.

Erin- What hospital is Tim having his Y90 at?

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Questions about Y90, theraspheres or whatever you want to call them.

Pam-- Kim also had Y90, you might want to send her a message on facebook.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Questions about Y90, theraspheres or whatever you want to call them.

University of ky. The doctor wss brought here to start the program here. He had worked for a long time with the other type of beads, but prefers these.

Re: Questions about Y90, theraspheres or whatever you want to call them.

Thanks Tiff and Erin. I am concerned about the Y90 because Lauren is feeling so good now, but I'm all for it if it gets her closer to surgery. Tiffany- I hope you get to get it too. I know it works for some people and doesn't for others. I just have to hope it will work for Lauren. Erin- Oh my. Your poor Dad had kidney stones too! That is awful. I've had those and they are sooooo painful. I hope that is why he didn't feel well before and he just sails through this time. 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.

Re: Questions about Y90, theraspheres or whatever you want to call them.

Tiffany,

I know Kim also had it, but considering all she is going through I don't want to bug her. I messaged her the other day to ask her about her newest problem. I just feel so bad for her. She is just so awesome. I really hope she catches a break one of these days. She sure deserves it.

-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: Questions about Y90, theraspheres or whatever you want to call them.

Pam-
You know Kim, she loves to help. I'm sure she wouldn't mind talking to you about it. Dr. Javle said he wants to get the most mileage out of the current chemo I'm on before moving on to something new. I'm ok with that, as long as the chemo is working.
I don't think the Y90 will effect how she will feel. I know my friend that had it, felt down a few days but other than that she was back to her normal self very soon. But she did have problems the second time she had it. She had some bleeding they had a hard time controlling. She had to stay over night in the hospital because of it.
I was going to ask you--I know she has been having problems with her counts, have you asked the doctor about a neulasta shot? I really think these are helping my counts stay good.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

12 (edited by Pamela Wed, 21 Mar 2012 21:24:06)

Re: Questions about Y90, theraspheres or whatever you want to call them.

Hi Tiff,

I haven't asked about neulasta. She is not on the Cisplatin at this time and he thinks that was the chemo that was making her platelets go down. So he doesn't think she will have that problem while not on the Cisplatin. He wanted to give her a break from that chemo because it is really hard on her. He is considering adding Oxaliplatin if her tumors don't remain stable on her current chemo. He said it is the cousin of Cisplatin, but I'm not sure if it is less hard on a person or what. I just have to believe they know what is best. I do ask a lot of questions and I wonder if they find me annoying. Oh well, I just read a lot and always have questions about why they are doing things a certain way. As for Kim, as the time gets closer for the procedure, I'm sure I will talk to Kim about it. I know that she lives to help people. Well take care, Tiff. I swear I have been writing to you on different topics all night!!

Love you, -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.

13 (edited by Jim Wilde Thu, 22 Mar 2012 10:51:17)

Re: Questions about Y90, theraspheres or whatever you want to call them.

Y90 can only be done 2x in a lifetime (I suspect due to toxicity).  It is typically done as a palliative, rather than a cure, to extend life.  There is a mapping procedure done a few weeks to a month prior to determine where the radioactive material will go.  If more than a small % (I think 3%) go to other than the liver, the procedure may not be done.

Primary side effect of Y90 is fatigue, plus other more subtle ones.

I hope this answers some of the questions.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Questions about Y90, theraspheres or whatever you want to call them.

Pam.....Our sweet Suzanne had written about it in detail:

http://www.cholangiocarcinoma.org/punbb … hp?id=3259

Pam, trust the physicians - they are taking an aggressive stance and putting out the fires.

Although, it is considered a palliative treatment - it is a meant to reduce the tumor load - and that is significant. 

Hugs are coming your way,
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