holly22a
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Hi Bruce! All went well. Then I had y90 3 weeks out and am back on chemo already two more weeks out. The proverbial “kitchen sink” approach. I am planning to post all about the experiences – – i am really just coming back from one hell of a month. Thanks for asking! There won’t be any scans for another month since the y90 leaves the liver all inflamed and the mri’s are “scary” according to my interventional rad doc.
I, too, am a patient of Dr. Kato’s. I had a left hepatectomy on January 31st – – seems simple but I was in ICU 3 days and regular 4 more. Dr. Kato threw the surgery in between parts of a chemo-y90-chemo “sandwich” and took the main tumor even though he knew he was leaving lots of small itsy bitsy ones in the right lobe. Just out to reduce tumor burden in general. I had y90 three weeks in and chemo started again two weeks after that. Kind of the “kitchen sink” approach!We always stay at the crowne plaza hotel in engelwood – they have a special rate for New York Presbyterian patients and families and it is a quiet, nice place. – Holly
Yes, Lainy, I forgot to mention that! Even when you empty your bladder completely before they wheel you in, it’s an excruciating wait to pee. You have to hold you leg through which they got into the femural artery perfectly straight for many hours after the procedure – – so you are only allowed a bedpan and with the leg it is nigh impossible. Torture!
dear new friends:
As to y90, I just had it in february. It is not easy. I am 55 and in excellent health otherwise. Ther two procedures, one to map and one to infuse the beads, are two weeks apart. They both go through your femural artery, which can be painful and difficult, and require hours of laying on an xray bed and also breathing when you are told to. The infusion itself can be painful – – got me sharp right between the shoulder baldes, and I have a high pain threshold. The two weeks following the y90 I ran fevers every day and the liver hurt. Good thing I still was on narcotics from the abdominal surgery several weeks earlier. So I must say I cannot see putting my grandmother, who had alzheimers, through this. That is my feeling. I just want you to know of my recent experience and I will be posting it under the propoer discussion board soon. But of course you must decide for your own family.
As to the chemo, gemzar (gemcitibine) has very few side effects and is generally well-tolerated as compared to the platinum drugs. It can be very effective alone. But remember that many of these cc cancers are not responsive to chemo at all and there is no way to know ahead of time. You just have to go through it and wait on the next set of scans. Medical procedures of any kind are not fun. My onc told me that if my cancer was not responsive to chemo I had 6 to 9 months but if it responded, I could have many more months, maybe years. None of us really knows. As Lainy says, no expiration date has shown up on my feet yet!!!
I wish you all the best. Many thoughts go out to you both today
and feel free to come back with questions, that’s why we are here!
HollyI may be old-fashioned but, maybe try the tried-and-true BRAT diet (bananas, rice, applesauce, toast). Especially white rice ….. fixes it every time.
All good thoughts for your trip, Darla! Wanted to let you know that we have stayed at the Crowne Plaza in Englewood, NJ (just across the GW bridge from the hospital,) which has a special rate for NYP hospital patients and families. When I was in the hospital, my husband stayed at Michael, New York, a small guesthouse only three blocks from the hospital and only $80 per night (for nyc that’s cheap!) You can google it on tripadvisor.com which has the best reviews, etc. Dr. kato is wonderful and funny. You are in good hands! ~Holly
Dear Susan,
I am so sorry to hear about you and your husband. Glad you have gotten those 2nd and third opinions, but so sad you are obviously in anguish. It can take a little while for things to sink in. Maybe husband will be ready to reach out soon. You should not be alone in this, should not have to bear this grief so privately. BTW I have ICC and zero symptoms. In fact, that is the most common way of presenting. I only felt vaguely “unwell” maybe a little tired or nauseated and had a coupe of migraines close together. Otherwise I never would have even gone to the doctor. Please let us know how it goes. Even if you have to keep a stiff upper lip at home you can come here to cry and rage and find company. That’s why we are here. HollyThat’s really interesting, Bruce. Who was your wife’s surgeon? I guess the mets to the liver should really push a patient off to stage IV? I don’t know much about staging, but the liver mets is definitely bad news in this business.
As to the cHCC-CC, I do not know. The prognosis statistically is actually worse with this kind of cancer, but I believe that is because it is caught so late most of the time. I have no signs of cancer, no errant liver functions, no pain, no jaundice, nothing. I only caught it even at this late stage because I did not feel “well” and just knew in my gut that something was wrong and was blessed to have a doc who went in for an MRI based on very vague “unwell” symptoms and who listened to me.
As to the chemo it is anybody’s guess. I think these cancers take different paths for every person. There aren’t enough of us to put together a good picture or standard scenario. I think maybe I should be asking YOU all the questions! Thanks for all your good work with statistics, may the data give us answers!
Thank you all for your responses to my case. @ Bruce, actually, you have it backwards in my case. Dr. Kato said no to surgery at first also. Every single surgeon I consulted with said, “do the chemo first and IF there is a robust response, surgery can be a go.” (chemo was 1000 mg/m2 gem and 70 mg/m2 cis, a big dose) So I am very lucky that there was a huge response, not just in tumor blood markers, but in size and PET activity also. Main tumor went from 6.7 cm to less than 2 cm, many little ones just completely disappeared, etc. So Dr. Kato was no different than the others on that score. I chose Dr. Kato from the beginning because I like the way his mind works and I like Columbia/Pres Hospital, and because the oncologist and radiation guy are fantastic people and docs, too. You just have to have a whole team that you “mesh” well with and can communicate well with.
Also, Choti and others said no before the MRI showing “all the little tumors” — they just assumed that with mets, they would be there unseen.
But the truth is (for any of us) if there are ANY mets to the liver, there is microscopic disease you cannot see. If you have one main tumor and two other little ones, you can be assured you have other smaller ones that do not show up on any scans of any type – – yet. Every surgeon told me this also.
And there is no safe section of the liver once you have mets. You can resect out the tumors but what you have left you will have to be vigilant about. Adjuvant therapy, further treatments like rfa or stereotactic radiation, etc. will be needed to “clean up” the remaining liver. That is what I heard from all the surgeons. That is why ICC comes back so relentlessly! Actually, ‘comes back’ is not the right word – – it was there all along and it has just grown to where it can be seen on a scan. But at this time you are working on eradiating tiny tumors, not a big one.
So I am not a doc either, although I know I am not the only one on these boards who has been studying my liver anatomy like a med student, lol! I just wanted to correct any misunderstandings. The one thing I heard over and over was the necessity of a great response to chemo. If a case is initially unresectable and does not respond or grows on chemo, few surgeons, even Dr. Kato, will go in with any high hopes.
So I am off to surgery and will keep you posted as always! Thanks!
Tammy, I am so glad you found us as we will all try to help you in any way we can. I am amazed at your resourcefulness already. A second (and sometimes 3rd and 4th) opinion is good – – pretty soon you are going to find yourself really educated about a cancer you never knew existed! I can now talk liver anatomy like a medical student, funny thing! So on the medical front, the fact that your Dad’s tumor is stable on chemo is good news – – often these darn things keep growing. So since his tumor is chemo-sensitive (and there are other chemo cocktails to try but gem/cis is the frontline one) you have that in your toolbox. Try to think of this cancer as a chronic disease, with various things docs can throw at it. One definite good thing is your Dad’s age and over all good health and physical strength. That’s going to be very helpful and important in his fight. One book I was given (I am 55 with ICC initially not operable but after good response to chemo, going to surgery this week. It won’t get every cancer cell, but it will take out my big tumor and then we will “clean up,” according to my oncologist) is by Jeremy Geffen, called “The Journey Through Cancer,” and I highly, strongly encourage you to grab a copy. Geffen is an oncologist who has spent his life in tradtitional cancer treatment but has also spent a great deal of time studying eastern medicine and all the emotional aspects of cancer. You will have to beware in your family’s journey not to be overwhelmed by the internet and the many false promises of alternative therapies. Geffen’s book gently helps you wade through it all and also helps enormously with turning “fright” into “fight” and marshalling the emotional resilience for the long haul with this cancer. Please know that we are all of us on these discussion boards pulling for your Dad, you, and your lovely closeknit family! One last thing is to be sure to file for social security disability. Don’t wait. Every little bit helps, and with cancer, you can’t be worrying all the time about the farm, too. So keep us posted on everything, ok? We’ll be waiting here for you!
Well, I have not yet had the resection surgery but it is scheduled for next week. I was told no by many because of one 7 cm main tumor and two smaller ones and many little ones throughout the liver, but with a robust response to chemo the surgery is a go and we will clean up afterwards, say my oncologist and surgeon. All said the response to chemo was key, that everything had to shrink or disappear. All said that once there is intrahepatic metastasis, there is disease throughout, even that which cannot be seen on scans.
