1 (edited by hisprazr Sat, 30 Nov 2013 17:30:26)

Topic: GEM/CIS, now imrt, then what?

Mark (my husband) dx in April intrahepatic cholangiocarcinoma 15.9cmx 13.4 cm.  It is located in the ducts and invaded both lobes of the liver and caudate area.  He was sent to MD Anderson where chemo was decided as first treatment GEM/CIS.  He did 8 treatments with some platelet issues but CT at end of 8 treatments showed mass as large as when begun.  Even surprised doctor who really expected more shrinkage as the first CT after 4 treatments showed about 30% reduction.  Radiation Oncologist chose to have surgeon place alloderm spacer between liver and stomach/soft bowel tissue to protect.  Then one week later instead of proton therapy (as we had been originally told) IMRT was chosen as the better option.  He has been through 15 days of IMRT at 100Gy center of mass and 58.5Gy outer edges.  He has 11 more days to go.  Because his platelets had dropped on three occassions to 75 or less, the doctors all concurred that it was best to hold off chemo while doing the IMRT.  They say it will be 2-3 months before they will be able to see the complete affect of the radiation on the mass.

We believe in miraculous healing but are also not in denial that God doesn't always answer the way we would like.  I am just hoping they are being forthright with us and there truly is a chance that this could kill the cancerous mass.  Anyone dealt with this particular situation out there?

Re: GEM/CIS, now imrt, then what?

I have an appt with Dr Aloia about the spacer and proton therapy next Friday.  My oncologist is Dr. Javle, who does your husband see?

Re: GEM/CIS, now imrt, then what?

I too believe in miraculous healing and have strong faith.  No we don't always understand Gods way but we know that he knows what's best.

Re: GEM/CIS, now imrt, then what?

Is the IMRT another name for y90?

Hope, love, strength...2013 and for the years to come, Porter.

Re: GEM/CIS, now imrt, then what?

IMRT and Y-90 are different radiation treatments.

IMRT is an external beam radiation treatment.

Y-90 is an internal radiation treatment where beads imbued with yttrium-90 are released in the artery feeding the liver.  Since cancer cells are heavy blood "drinkers," the beads lodge in the tumors and the Y-90 radiation kills them.

The different radiation therapies are very confusing and use a LOT of acronyms!

This link is a very good overview of the different radiation options:

http://www.cancer.gov/cancertopics/fact … /radiation

Jason

Re: GEM/CIS, now imrt, then what?

Hey thanks Jason for the clarification.  smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: GEM/CIS, now imrt, then what?

Danna0325,
My husband is seeing Dr Desari as his primary oncologist and Dr. Crane for radiation.  He completed the IMRT on Dec 16th and is still very fatigued and abdomen extremely distended.  They gave fluid pills today and want to give it a week before they see him again. If that didn't change anything they will do another scan to make sure there is no other problem going on besides that beast of a tumor irritated and dieing.

Re: GEM/CIS, now imrt, then what?

my husband is also Dr javles patient and dr cranes as of today. We will see Dr. Aloia for the spacer to be put in. Dr. Crane said this is comparble to surgury, the outcome that is. What do yall think. They said IMRT will be better for his tumor. Gordons tumor was 8.8 and now it is 6.2...from Chemo. The chemo that worked was FOLFORI. But DR. J said he fears there is more cancer elsewhere because of how high his tumor markers are. His liver is a little damaged with a tiny amount of ascities. He was diagnosed Nov 27 2012 and he is still working and doing okay....I to would like to see miraculous heaing but I believe in Gods will and am thankful for all the time we have, Gordon is 45.

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: GEM/CIS, now imrt, then what?

Heather,

Sorry I can't answer your question, but would you mind telling me more about Gordon's experience with FOLFORI?  My mom was on gem/cis chemo for about two months, but after her latest scan, her doctors want her to switch to FOLFORI.  How long was Gordon on it?  Was he also on gem/cis previously? 

Thanks in advance, and happy new year!

Caroline

Re: GEM/CIS, now imrt, then what?

Caroline,

Sorry it has taken me so long to reply, we have been in Houston(MDA)

Folfori hasnt been too bad...he has been on it since september and the tumor is shrinking. It makes him very fatigued, some nausea and it does drop the platlets. sometimes he has needed neutripen shots. Yes Gem/cis was a year ago, it is always the first attack on this cancer.  Also ask about the Tarceva pill to go with it, with some people it does have good results. Gordons ins at the time would not approve it.

Anytime,

Heather

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: GEM/CIS, now imrt, then what?

Thanks, Heather!  This is very helpful.  I hope your visit to Houston has been good.  You and Gordon are in my prayers.

Caroline

Re: GEM/CIS, now imrt, then what?

We go to MDA again tomorrow.  Mark is scheduled for another Catscan to compare to prior ones taken to evaluate what is causing the fluid build up in his abdomen.  They believe it is probably just the radiation but want to check and make sure it isn't some type of clot affecting the portal vein.  We are certainly hoping that it is just the body reacting to the surgery for the spacer and the immediate radiation behind it 10 days later.

Fluid pills don't seem to be doing much to decrease the distention but he is feeling better for the most part.

Re: GEM/CIS, now imrt, then what?

Hoping for the same, dear hisprazr.  Please keep us posted and tons of good wishes are heading your way.
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: GEM/CIS, now imrt, then what?

My mom received IMRT and chemotherapy at the same time.  Chemo: gemzar only.  IMRT 28 sessions. Gemzar for 7 months.  My mom decided to stop gemzar after 7 months because she was feeling so ill.  Initially, she received clear scans(CT and PET scan) after treatments, but then became ill only one month later because of occluded bile ducts. She then required stents.  Her tumor was also in the caudate lobe. No surgery due to involvement of portal vein.
Everyone responds differently. Unfortunately, mom initially received great news after treatment was done, but then only one month later, complications started.

Anna

Re: GEM/CIS, now imrt, then what?

Hi,
AsCites in liver patient, esp. On cirrhosis liver patient, account for the majority of patient who develop ascites. The rest is caused by malignancy .
Portal vein hypertension  is one of the major reason for develop ascites in liver patient.
GI OR internist  specialist can have a better ideas to care about ascites with regard to use diuretics to get rid of the swelling and edema,but also should provide and address  the hydration issue thru monitor of electrolytes ,BUN/CREATININE; plasma and total protein  etc.

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: GEM/CIS, now imrt, then what?

Mark is on lasix and spironolactone for the ascites.  It seems to be working very very slowly.  At least he can eat now and is hydrating.  He will have blood tests this week to check all his numbers regarding the diuretics and any chemical issues.  I am surprised that the swelling has not gone down more but the doctor said they don't want to diurese too quickly.   They changed a pain med today that he had been taking for pain in the left thigh also today and just called for us to come to the hospital to have new labs drawn.  So, we will have a better picture of the current status of things here in a couple hours.